Here are some quick pics. Will add more as I have time.
Colds suck
Harmony has another cold. She appears to feel like total poo, and on top of everything, being sick makes her seizures happen more. So we are having a lot of cuddle time these last few days. She also appears to have gone through a growth spurt. We officially retired 3-6 month jammies (onsies and pants sorta still fit). She's in 6-9 and they JUST fit her. Yikes. We haven't had a dr appt for a while, but a good guess is that she's up to 14.5 lbs. I need to check weight limits, but I think she may be ready to outgrow her swing and the top half of the pack n play.
Harmony works really hard every day to hold her head up. It's hard to say if she will be able to, to know how much her strength can overcome the low tone. Her tummy muscles are getting stronger and she can curl her knees up towards her now, so that's exciting. Now that she is not in pain from reflux a lot, she is fisting less. And she has smiled a few times. There are times now when she is alert and looking right at you, vs just spacing off.
We are still struggling with nursing coverage, and December may be rocky. We started using an additional agency, but so far we don't really dig them all that much. So we'll work to minimize having to use them as much as possible.
I think that gets us up to date. Still very much hoping the meds can get her seizures settled down. And hoping this darn cold will go away.
Checking in
Did you all notice the "what's new" button at the top of the page? I never did before. Fascinating.
Saw Neuro Tuesday again. The new meds (clonazopam, I'm just calling it Pam) don't appear to be doing much so far, but it's still a pretty low dose. So he upped it. In one week we go down on the phenobarb and up again on Pam. She doesn't seem to be having as many individual jerks, but the ones she does have are pretty hard and make her grunt. So I always ask a best guess for future prognosis whenver we meet, just in case anyone has anything new to speculate. He basically said the same, wait and see, but did say the longer she goes with not hitting milestones, the more concerning it is. He places her developmentally at 6 weeks (she's 4.5 months, in case you've lost track).
Now that the Prevacid is really kicking in to gear though, she is FAR more comfortable than she was, so that will help in so many ways. She's not super interactive still, but at least she's not constantly in pain from the reflux. Our next scheduled appt is not until December when we check back in with the GI dr. For now we are to just keep on with her continuous feeds to let everything heal, then we'll check growth and talk about changing foods.
Harmony is getting her first tastes of food though. OT has recommended tastes, but before it was just formula, which is nasty and she doesn't want to taste that (especially since she probably just equates that with barfing). So now that she's 4 months, we can do tastes of food. We started with applesauce over the weekend. Just trying to get used to stuff being in her mouth (the spoon) and not being yucky. Last night we tried to taste sweet potatoes but she was so sleepy she couldn't keep her eyes open in the high chair. Of course then we tried to tuck her in, and she was suddenly wide awake.
Some of Harmony's favorite things to do (near as we can tell): listen to music (or any kind, including being sung to), be read to (chapter books if she's on your shoulder, but bright pictures if she's feeling well enough to face forward - we are reliving the Sweet Pickles books from my childhood), stare at her mirror toy, stare at the picture Mama made and hung by her changing table, punch toys on her jungle gym. Oh, and get her diaper changed, she does NOT like having anything in there.
Some things Harmony doesn't care for: eating on the go (the carseat makes her reflux like crazy), throwing up (which leads to bad swallowing and lots of air and more throwing up), laying down flat with too much food in her tummy, getting her clothes changed.
Hopefully it gets cold soon so we can graduate to her next size bigger (warmer) jammies. The current ones are getting too short. She is really quite long. And if we can get our poop in a group, maybe we'll get christmas cards done. LOL. Maybe I'll post a Christmas card on here and let you all login to see :)
Finally an update
This week has been super busy, but I'll try to summarize to catch you up.
Harmony's seizures over the weekend started getting pretty intense and more frequent. We called her Pedi Sunday and she had us bolus some phenobarb, said if she had any more that were 10-15 min to take her to the ER to get a bigger bolus (it can suppress her breathing too much, not something we can do at home). As it was, that night we had her on oxygen a bit because she was breathing so shallow when she slept. Monday morning, I called the Lincoln Neuro to check in. He said to give the Dilantin more time, stay the course and whatnot. Added in Vit B6 and folate, as that's something that can help the type of seizures she's haveing.
Monday we saw the new GI Dr in Omaha. We really liked her, just did a lot of getting to know you with Harmony. We all agree the Prevacid seems to be helping the acid, so she wants to give her tummy a chance to settle, and had us go back to continuous feeds (3 hrs on, 1 hr off). That is going pretty well. It's inconvenient to have to carry her pump and food bag constantly, but we are getting in the groove of the backpack it came with and that helps.
Tuesday Harmony's seizures were again pretty intense, she had lots and they were long. So Wednesday I called the Lincoln Neuro again. He wants to see us next Tuesday (he's not in the clinic every day...he's like 100 years old, so that's to be expected) and wants an EEG before that.
Wednesday we had the swallow study. It sucked. The speech pathologist opted to start with the bottle 'just to see' and Harmony screamed the rest of the time. I wasn't kidding when I said oral aversion lady! She got about .5 mL in her mouth with a syringe. Said she's losing pressure in the back, her throat doesn't seal off quite right to her nose, so stuff tries to go up, and there's not good pressure for her tongue to propel it down. So the $100,000 question : is she aspirating? Yeah, they don't know, they didn't see where that glob went, and then with all the screaming she quit swallowing. She's an aspiration risk they tell us. Duh.
Thursday we had the EEG. Oh, that's today. Today we had the EEG. I took her by myself for the first time, which was liberating. And exhausting. We wrestled while they stuck the probes on, then she fell asleep just like they wanted. On me, so I had probe paste all over me. And stickers and tape and marker lines. But whatever. My leg fell asleep and I have a crick in my neck, but darn it, we got a great EEG they said :) Then we had to go to the Synegis clinic for her RSV shot (monthly shot so she doesn't get RSV). If you ever wondered where your tax dollars go, Medicaid is paying for this and it's $1200 a shot during the RSV season. Somebody is raking it in, and I doubt it's the hospital.
Lincoln Neuro just called to say the EEG was better than he expected. But, to be fair, he didn't have very high expectations either. Harmony is not seizing all the time, so that's awesome. She didn't have these huge scary spikes in electrical activity, just little bursts here and there. It's not ominous he said. He listed off kinds of seizures she is Not having, and was happy about that. While sleeping, they saw normal sleep patterns in her brain waves. It was slow though, as expected. Normal brain waves are 8-9 cycles per second, she is at 4-6 cycles per second. So not great, but could be worse. As for meds, he doesn't think the Dilantin is doing anything. And the EEG confirmed that her seizures aren't something it will help. So he's calling in a prescription for a kind of drug similar to drug #3 from the NICU, which was a Pam drug (drug that ends in "pam"!). He's going to get her going on Klonopin, then we'll drop the Dilantin. Then he thinks by Tuesday when we see him, we'll know if we are on the right track because Pam drugs ar pretty fast to get rolling in her system. He also said that these seizures are not causing damage. There are not huge electrical spikes when this is happening, and is not hurting her brain. So even if she's having them "a lot" (which is relative) while we wait for meds to kick in, it's ok.
Tomorrow is Harmony's 4 month Pedi appt. So more shots (poor thing). But as of today her weight is 13 lbs 5 oz. As of Monday her length was 24", so I'm sure that's still about right. We are stretching the limits of the 3-6 month clothes for length. Two piece outfits are becoming our friend.
Will try to update more often than once a week, but I will not make any promises :)
Changing meds
(Catherine - Hope you see this one, you may remember or have insight on the 3 drugs?)
In the NICU Harmony was started on Phenobarb, then they added two other meds before her seizures stopped. Then tapered back off the two and left the Phenobarb. I think one of the others was Phentoin (Dilantin)? I don't know the third. We were in such a fog, it's a wonder I remember that much. Well Neuro asked how Harmony has been doing on the lower Phenobarb. We said (except the breakthrough seizures of course) GREAT! She's holding her head up more, has more coordination in her arms, looks at us more, tracks stuff, and a couple of times has been interactive and SMILED over and over when we kissey on her lips, making a big production of smoochy noises and going in really slow. (funny that with such a severe oral aversion, the only smiles we have ever been able to get have been from kissing her lips). I digress, the point is, she's been progressing, which is why it's so heartbreaking to know we have to keep her on meds to keep the seizures under control. Well Neuro is switching us to Phentoin. It appears to be a bit more common to use that as a maintenance anti-seizure med, should dampen development less, etc. So we will be on both until the Phentoin gets built up in her system (a couple weeks), then will start to taper phenobarb again. We are probably in for a couple of sleepy weeks. But, as we get her GI stuff hopefully under control, frankly maybe that's not so bad. We have our GI appt Monday with the new Dr (swallow study Wed and 4 month checkup Friday - in for a busy week). Bad thing is Phentoin can upset her tummy, so we'll see how that goes. Interesting note, an online friend who has a daughter with very similar issues as Harmony, though she's 4 so the mom has lots more experience than me, she said a neonatologist told her the bowels are often the first thing impacted by the hypoxia, and can be the last to heal, even taking a year. SO, though it sucks to think Harmony's guts may be jacked up for a while, somehow it's comforting to know there's a logical explination, that nothing is hideously broken or wrong. By the way, total blood workup yesterday and they can't find a thing wrong. No hidden infections, viral deals, electrolites and whatnot are ok (checked because of the barfing), etc. So she's healthy as a horse in that sense. It's so hard to reconcile how healthy she is and isn't at the same time.
Not the greatest news
We are still dealing with the vomiting and trying to sort out Harmony's near constant pain and discomfort. But on top of that, she has had a few breakthrough seizures. Yesterday morning, though we weren't sure, and then several times today. So we went back up one step on her phenobarb, and her Primary is consulting with the Neuro here in Lincoln to get his thoughts. We have an appt this afternoon with her Primary, and among other things, we will have a phenobarb level done so we can have a baseline number to keep her above. I don't know how nervous we should or shouldn't be that she is having these, will they easily be stopped by going back up on her amounts, so I guess we just wait and see.
Reflux is the devil
I have not had time to get on here and say anything because we've been scrambling this week to figure some things out, get to Dr's appts, etc. I rely heavily on two message boards (one for tube babies one for GERDlings, as they are sometimes called - reflux babies :)) and post there for advice and support. I've been directing my updating efforts there, and am stealing my posts from the Reflux board so you can try to catch up. The hitch is, there may be things here I haven't mentioned or explained, but hopefully you'll still get the gist.
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I'll try to summarize as best I can, but this will probalby be long. History: DD has a laundry list of issues, but our main problem right now appears to be her reflux. She started on Prevacid at 1 week, has always been tube fed, nothing by mouth at all. Her only other med is Phenobarb for seizures at birth. Food history: BM to start, at 6 weeks did 50/50 RTF Alimentum (severe gas, rash, concerns about protein sensitivity and I was quitting pumping anyway). Changed to 100% alimentum after a week because gas was still so bad. Started throwing up, so we switched to Neocate. Gas went away, rash mostly cleared up. Had 1 week honeymoon. She got a cold and appeared to start gagging on snot, throwing up snot, etc. That went on a couple weeks, then the cold cleared up, but her throwing up has just kept going. Sometimes throws up mucus, sometimes yellow (bile I assume) when hungry.
DD is 4 months next week, 12 lbs 8 oz. Currently is on 6mg of Prevacid twice per day (so ttl of 12), compounded solution. Until a couple days ago, we were giving it with food, pharmacy never said 30 min before (and even now they say doesn't matter), but we are now doing that. Just started a new bottle this week (I know there are concerns about it not lasting the whole month). DD arches, turns her head hard to the right, appears to startle sometimes then cries, acts like it hurts when we feed her (aka all the things I see on the videos on this site). She "leaks" when laid down, when crying hard, or right before it's time to eat when her tummy is running in empty. During and after a feed she throws up. (currently we feed her over 1.5 hrs, then off for 1.5, with the hope that there will be less in there to throw up - throwing up does not appear to be related to rate or volume at this point). Often will start with a hard cough, face is red. Then she will work to keep it down, but you can feel her stomach contracting/lurching, and every time within about 5 min she will throw up hard. Depending on how much is still in her stomach it's projectile, out her nose, the whole nine yards. Generally appears to feel like crap and to hurt and I dread feeding her.
Most recently she had some button trauma (got pulled out once even) and she had some blood in her stomach. But yesterday she had blood in her stomach and I have no idea why. I'm nervous she has an ulcer from her button balloon, but no one else seems concerned.
She was scheduled for a fundo, but the surgeon said lets try some other things first and sent us to a pedi GI.
She has not yet had a swallow study to determine if she's aspriating, but her lungs have always sounded clear. She does have constant congestion.
Saw the pedi GI today and in a nutshell, I think he was irritated that I came to the table with questions and info from what I've learned here, marci-kids site, etc. He had no interest in discussing things. He offered to do a PH probe. Didn't buy into the compound concern, 30 min before, etc etc. Offered to presribe prilosec if it would make me feel better to try something else. Said we could try eurethromiacin, but when we are feeding her at such a slow rate, I don't see how that would be much different. Didn't suggest thickening food, said after our swallow study maybe they would recommend. I was even hoping for guidance on how much/how often for feeds, but he only wants to base it on her weight (she's not very active and I"m concerned I"m feeding her too much). Not to mention he laughed at me a few times and was such a jerk that DD's private duty nurse that was with us was even frustrated and thought he had no bedside manner. Basically he summed it up that everything I was describing was as if she was having acid reflux and irritation from it, but that can't be the case because she is on Prevacid. He wasn't willing to enterain the thought that the Prevacid wasn't working, and went on to say it sounds like she is having seizures. None of her nurses believe she is seizing, and her OT says she observes uncontrolled reflux (she was the first to tell us the arching was reflux, as Neuro said it was a low tone thing).
I will next go back to her pedi who does listen and wants to work with me and I'm going to share with her stuff from this site to start a convo.
Questions - Does all this sound like we have uncontrolled acid issues to you all? I read the dosing mentioned in other posts and it seems we are on the low end of dosing if I'm crunching my numbers right. Is her throwing up (stomach lurching projectile vomiting) in line with reflux? I'm frustrated at how the GI tried to dismiss much of this as neuro issues and I'm not buying that. Basically he wanted to just recommend the fundo.
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I have Harmony balanced on my chest so I think I can actually type with two hands for a minute!
Her primary is actually an nurse practitioner, and at our last visit she was the one that was really on board with moving forward with the fundo. I think she is just SOOO afraid of Harmony aspirating. Well we sometimes see one of the Dr's there, and I made an appt with her for tomorrow to talk over everything. But Harmony was having such a terrible day today, I called back and said what do I do for the next 24 hrs, she's just screaming, etc. So they got me in to the other Dr, whom I had never met. I am IN LOVE. He asked me if I have a medical background. Ha! Well sure, 4 months worth, since the day Harmony was born. He knows of Marci-kids, has 2 kids at the office on Zegerid already. He doesn't know all the research details, and said, I quote "educate me!" I told him about the dosing guidelines, I had printed stuff out from the site. He was so on board it's not even funny (and so anti-fundo). He gave me samples of Prevacid solutabs to try for right now, I will still meet with the other Dr tomorrow to talk about a game plan, get a prescription, etc. He agreed that you can't OD on PPI's, that we should take full advantage and use in the way that makes the most sense, and was really interested in what I told him about compounds, 30 min before, etc. He is not surprised about blood in her tummy, and says the barfing I describe is totally in line with her esophagus being horribly irritated. AND he was not terribly impressed with the GI Dr to say the least (GI had called the office already to give them his consult opinion junk). He poo-poo'd thinking her Sandifer's is neuro related, and even acknowledged that her apnea is probably related, from what I've described. He's the first Dr to say he thinks she is protecting her airway in some ways, not this big scary aspiration risk.
So I still have to work out that her primary is not quite on this same track, but I have a good enough relationship with her that I can talk to her about it. Plus, I've not had this specific convo with Marci-kids info with her yet (she's gone this week).
This is such a roller coaster, but I feel like at least we have just the SLIGHTEST bit of control now. Harmony still feels like crap for now, but at least I can say I'm doing everything I can to make her feel better. Feeling empowered is really huge.
Can we get off this roller coaster please?
Harmony is not going to be having surgery Friday. Dr. Cusick (the surgeon) thinks that we should try a couple more avenues first, and we agree. We are to meet with the feeding and growth clinic at Children's as our next step, to see if there is anything more with food or meds that we can try. The more we learn about reflux, the more we are learning that it accounts for a lot going on with Harmony. Her's is on the worse side because of the way she has to eat (she doesn't have the benefit of her saliva starting the process of digestions, for ex).
I was going to type more, but I think I just fell asleep for a second...will update again when we know more.
Less exciting news
Just found out that Harmony will actually be in the hospital 5-7 days after her surgery. They want to make sure to give her tummy time to settle, monitor her, get her feeds started back up, etc. So not ideal, but nothing much we can do. We will be up there Fri-Sun and stay a couple of nights at the Rainbow House, which is right by the hospital. Then back to work Monday and we'll drive up in the evenings like when she was at the NICU.
I guess if we wanted to be silver lining kind of people, we'll be able to get some sleep for a few nights. And frankly it might be better for Harmony to do some extra healing in the hospital with 24/7 nursing care, rather than Mama and Daddy trying to play nurse at home. Well, we do that now, but it would be even more.
Should be interesting to see how overpacked she will be. I tend to do that...
The countdown begins
Harmony got her upper GI yesterday, in prep for her fundoplication surgery next Friday (23rd). They actually put the contrast right in to her button, rather than down her throat, so that was handy. She didn't appreciate being held down for the xray pictures, but did really well. Her reflux even performed for the camera :) Now it's just sit-and-wait till her surgery. It is either 1 or 2 nights in the hospital (Children's in Omaha), we are still waiting to hear the expectation. And just because it's amusing to ME, I'll share: Harmony then had 3 GIGANTIC white poops last night. Ot was really quite impressive.
Last Saturday Harmony got to go on her second ever non-Dr outing to visit Grandpa Carroll at his house. As you can see from the pictures, she approved of the trip and visit.
We are starting to see the effects of the lowered phenobarb! Harmony is able to stay awake more during the day, and she's moving around a lot more. She still can't hold her head up the best straight on (she can to the side, as this is her reflux defense and she's had lots of practice), but it's getting better and better. We made her an 'art project' (no pictures cause it looks like a 3 year old made it) that hangs next to her changing table and she likes to look at it and is starting to try to touch it. She doesn't have the greatest coordination, so it's mostly taking swipes at it at this point. She also likes to lay in her crib and watch her mobile and mirror for chunks of time. Especially when she's pooping :) She lays there and kicks and grunts but looks happy as a clam. Then she will hollar when she's done and we have to change her ASAP because HARMONY DOES NOT APPRECIATE HAVING POOP IN HER PANTIES AT ALL. We haven't observed any seizure-like behavior, so that's exciting. One more week on this dose, then we step it down again.
Last Tuesday, Harmony weight 11 lbs 12 oz. I'm pretty sure she's solidly cleared 12 lbs now (my bathroom scale says 13, but I'm skeptical of it's accuracy). And she was 23" long one week ago. She has her 4 month appt coming up Nov 6th, so we'll have to find out all her percentiles and whatnot then.
The suspense is killing you
We had our second opinion with Neuro yesterday. In a very tiny nutshell, there are two camps: leave Harmony on phenobarb just in case vs wean her off and see how she does. Considering she was weaning off by growing, and hadn't had any signs of seizures, that seems promising. And we got a lot of info from the Dr to help us make an educated guess as to what to do. But basically we were already in the "wean" camp, and the Dr just gave us reasons why it's ok to try, how and what to do (he's in that camp too and he would have weaned her starting at 8 weeks).
The phenobarb could be as bad for her developmentally as seizures, and we don't even know for sure if she would be having seizures anymore. The way that it stops the brain's crazy electrical stuff (which causes seizures) also means it slows that "rewiring" we hope can happen to overcome the O2 deprivation damage. And just remember the last time you were fall-down-drunk - you don't have great control over your body. That's what Harmony is like, and it's really hard for her to develop physically like this. So we will wean slowly and watch closely.
But last bit of excitement, as much as we liked the Dr, he's not too familiar with dancing around a g-button. Not sure if he stepped on her tube or what, but he managed to pop her button out during his exam. Full balloon and all. My training and practice served me well - I'd already replaced it once this week cause the button the surgeon put in Monday was defective. I got the button back in probably within a minute, and all was well again. Harmony's tummy was a bit sore last night, but it was going to happen eventually. And probably will again.
Decided on the fundo
We officially decided yesterday that Harmony will be getting the fundoplication (nissen). It's a laproscopic procedure where they tighten the sphincter at the top of the stomach to keep things in. (namely, her stomach acid) There are pros and cons on both sides, but after going round and round for 3 months about it, we are sure this is the right thing for her for lots of reasons. So the ball is rolling with that, and I will call the surgeon's office in the next day or two to find out when we can do it. It will be done at Children's in Omaha, and would be an overnight stay (nothing longer unless there are complications).
We are also getting a second opinion on from a Neuro in Lincoln. The one who saw her at St E's actually. Just to make sure she really does need to be on the phenobarb for this long. Breakthrough seizures are a big deal though, so if it's a possibility, then it makes sense to keep her on it.
Will update when I know more.
Omaha visit today
Harmony's swallow eval went well, as far as giving us some more concrete ideas of how to do positive oral stim. We were amazed at what Harmony let them do with her mouth! We are supposed to work pretty hard at it for a couple of weeks, and then are to get a swallow study done. The biggest hurdle is actually that Harmony has to sit in a chair of some kind, and she doesn't tolerate that terribly well. We hold her so much, somewhat to make up for so long in the NICU and not being held (guilt) but also to keep her food down, especially lately since she's a barfing machine. Anyway, we have been working, but will work harder, on putting her in her various seats/swings/etc. She does the absolute worst in her car seat, and I'm not really sure why. It's not just being strapped in, as she is strapped in her swing or high chair and tolerates that better, though not the greatest. Anyway, she can't be crying for the swallow study. I'm crossing my fingers.
The second appt of the day was to get her Mickey button changed for the first time and get it checked. Everything still looks great, no complications at all from the button, and the surgeon is very pleased. And wow, it was totally time for a new button - I now realize that one had gotten kind gross! But the fundo conversation came up again, we brought it up. Harmony's reflux is just really bugging her. It seems it's time to increase her Prevacid again to catch up to her weight, but even then. She's barfing left and right, though still has (or has another) cold, and she seems to be gagging on snot. This has been going on for 3 weeks now and it's really wearing me down. I feel like she's a ticking timebomb. She eats, then about 1/2 hr later she wakes up, squirms a bit, then fountains formula all over me, her and anything nearby (don't ask about the state of our furniture). No matter how prepared I think I am, it goes all over. It's really hard to guage how much of this is from the cold. Then she's running on empty and her stomach acid will start to go nuts. But in general, I just feel like I can never lay her down or something will start running out her mouth for some reason. The surgeon suggested trying a GJ (where the tube goes into her intestine, bypassing her stomach - since it wouldn't be much of a jump for us at this point, and is undo-able), but she had an NJ in the hospital and her reflux was worse. I'm not terribly excited about continuous feeding (though that's what we are doing now because of all the barfing). Also, in the NICU they said the fundo wouldn't be laproscopic, but he says it would be at Children's where he is. Anyway, so long story short, we are really thinking more and more that Harmony may end up with a fundo.
Still barfing, and upping the phenobarf
Harmony does seem to be feeling a little bit better, but she's still barfing a bit. So we will keep going with her continous feeds until that settles down more, then try to ease back to bolus. Her poo is also much better, so it does seem like we're moving in the right direction.
We do need to watch to make sure she's not getting an ulcer in her stomach from the balloon on her button rubbing. We have seen little 'flakes' when we burp her (I joked that it looked like chocolate chips, and thought it was just yuckies in tube, didn't realize it came out of her). Hopefully that doesn't become and issue, but it should explain why she shreiked once when we turned the button. Though doesn't explain why that was only once and not all the time. But that could contribute to barfing is the point here.
We also just heard back on her latest phenobarb level. They checked it Thursday when we were up at Children's. Last check was 1 month ago and it was 29 - this was actually higher than when she was discharged 3 weeks before that. They want it to stay in the upper 20's. Well she's grown a bit since then, and her current level is 15, which is not good. So her dose has been slightly increased, and we have to give it to hertwice a day now. She will get less at one time, but more overall. We'll see how that affects her tummy, as it tends to make her urpy, so maybe this will be better in the long run anyway. It's so frustrating to not know if she even really needs it. There's not a way to know for sure, but the EEG would have told us a lot. We will have that done Jan 6th the next time we meet with neuro.
That's the latest, hot off the press.
Barfing update
Kathy thinks Harmony just had a stomach bug this weekend. She says Harmony's tummy is probably the weak link and she'll get barfy when she's not feeling well. One of our nurses had mentioned before too, in the context of her kids being that way. Harmony lost 3 ounces these last few days, so that did concern her, but I just have to wonder after that huge jump last week, maybe she was just bloated or something. We have another appointment with Kathy next week anyway, so we'll monitor it.
We are just doing a continuous feed for right now, meaning Harmony is getting a steady drip of food at a rate of 30 mL per hour. We can pause it, it doesn't have to be non-stop (so like for bathtime we'll stop it). This is how she ate for most of the time she was in the NICU, so it's hard to not feel like we are backtracking. But it is sooooo much more comfy for Harmony right now, that it makes up for it by far.
Rough weekend
Apparently you all (whoever you all is...are) check this site far more than I knew. So rather than really long infrequent updates, I'll try to post quickies more often.
I think I've dropped writing in the third person, and perhaps some of my perkiness has gone away. I try to sound very upbeat and optimistic, but frankly that's hard and unrealistic most of the time.
So how is Harmony doing you ask? Not well. She has normal-baby problems that get multiplied by her special issues. And then she has her special issues. She had a cold, ended up on antibiotics, and was throwing up. The dr thinks the throwing up is from the cold and then the antibiotics are messing with her also. Last week we were concerned that we were feeding her a bit too much (especially after the big weight jump), in spite of what the charts say for how much she should eat for her size. So we dialed it back a bit Friday, and she seemed to do really well. Then Saturday morning she barfed again. And this is not just spitting up, but like stomach-lurching, out the nose and mouth fountain of barf. Sometimes an hour after she's eaten, and not in relation to how much. Then our 6-a-day pooper didn't poop for 24 hours. So we did a little "stimulation" down there, and got her to poop twice. Now it's been 48 hrs, and that's still it. And all weekend, we couldn't keep anything in her. She was even leaking out Pedialite Saturday night that we did as a drip overnight. She shrieked when I touched her button once this weekend, but no other time. She cries when we feed her, but in the past she's done that when she's gotten too hungry, so it's hard to know what to do. So we called the Dr again this morning and I'm taking her in today.
Thursday Dr visits
Just a quick update, as I'm very behind at work from missing a day. It's very difficult having our Dr's all up in Omaha, as it's an entire day trip to just go to 2 appointments. They we are all so exhausted at the end of the day, we just can't do anything else. And it's really hard on Harmony, as she HATES her carseat (she has very very little practice with it since she doesn't get to go out but to the Dr) and this time she SCREAMED the entire drive to and from Omaha.
Met with the ENT. He didn't really have much to say other than he's happy Harmony's reflux appears to be improving a bit. We asked about a swallow study, and he said maybe not yet. But then he asked us if we were working with the Swallow Clinic, and we didn't even know OF that. So he referred us to them, we are playing telephone tag still, but it sounds like step one with them would be a swallow study. They are at Children's in Omaha, but the study is also done at St E's in Lincoln, so we are going to try to push for that. This will help us to know how Harmony's mouth is working, if she's aspirating, etc.
Then we saw the neurologist. In a nutshell, she doesn't think Harmony is hitting her milestones already. She is doing a few things ok, like making eye contact, being alert, moving around some. But she can't hold her head up as much as she should, isn't social smiling much, isn't vocalizing, still has low tone in her trunk and arms, and doesn't startle to loud noises or respond much to noises. She's still very little to know how significant all this is, and there is so much "wait and see". She may eventually be diagnosed with a motor disorder if this continues (like Cerebral Palsy for ex). Though they said Harmony would get a follow up EEG at 3 months, they are now saying no, that's like 6-9 months. Not sure where the disconnect there happened, but that will be early January it sounds like.
So we are still waiting and seeing about everything. It's frustrating to go to appointments and come out of them going "why did we have that appointment anyway? what did they do, what did we learn, etc". The feedback we are getting from OT each week is far more encouringing, and she hangs out with Harmony in our home for 1 hr a week. So we are putting more stock in what she says at this point, frankly because it's more positive. But we feel she's getting a better view of what Harmony is really like on a regular basis.
Working backwards, but we also saw Kathy the day before, to check in about Harmony being sick. She's had a cold for over a week now, been on antibiotics for a week. She had been barfing so much, and Kathy just wanted to take a look. Well we found out that Harmony gained 13 ozin 8 days. Though Kathy's happy with her overall weight, that's a lot all at once. And though Harmony should be getting a certain number of calories per day based on weight, given that she's apparently not as active as other babies, her intake probably needs to be a little lower. This was probably not helping her throwing up either. So we dialed back on her food just a tad, and hopefully that will help. But she has officially outgrown 0-3 month clothes, is solidly in 3-6, and is graduating to the next size diapers today if we can get to the store. We've had some close calls with her current diapers, and they just suddenly are not quite big enough. And now that fall has officially hit, Mama gets to go clothes shopping for some warmer clothes for Harmony. We already cleaned out Walmart of the $3 Halloween onsies - hurray for cheap seasonal clothes :)
Be sure to sponsor Harmony's buddy Carson!
I hate technology
I've been typing a new update for 20 mintues and just clicked something by mistake and it's gone. I know you can feel my pain. I'm trying not to dwell.
So I'll try to recap, but it will not be clever or amusing like my first try :(
Harmony had her latest Pedi appt last week. She is 10 lbs 7 oz and growing right on schedule. Her feeds are increasing, and that is helping her reflux. Her gag reflex is getting stronger though, which is an encouraging sign of progress.
She does have her first cold, which has been rough. And the antibiotics she ended up on make her barfy.
We have Dr's appts Thursday in Omaha to check in with the ENT and Neurologist. Not sure what to expect from those visits, but this is the first the Neurologist will have seen Harmony since she was maybe 3 weeks old. She will be getting a new EEG soon, which will help us know if she's still having seizure-potential brain activity, and will help determine if she has to stay on phenobarb (possibly for the long haul). So we are pretty anxious for that appt.
Last night we had our first respite hours! We took the dogs to the dog run (they really needed it) and went out to eat (thanks Keri and Jeff for the Hu Hot!!). Then we went home and hung around for a bit, and that was it.
Edit: And then I went off and forgot to tell about her big day yesterday. Harmony got to to go to church for the first time! She was dedicated, along with her buddy Shannyn. Mama and Daddy were nervous, since that's Harmony's first outing other than dr's appts. But it went well, and it was great to be able to see everyone. Maybe we can steal pictures from Shannyn's Grandma to post!
Spreading the love Arkie style
Let's hear it for good nurses!
Last Friday Harmony had a great day with Jessica. Mama handed her over in the morning, and there were no tears, no crabbing. And Thursday she did very well with Alandrea also (this is after 2 days of fired-nurse, both were bad). Well today it's Melissa. We had another great hand-off, she clicked with Melissa, and Mama just called for the lunchtime update. Harmony is smiling and hanging out right now. So GO MELISSA! It's SOOOOOOOOOO awesome to know she is at home with someone she gets along with, and who seems to dig her.
Might be on the right track
We have been struggling with Harmony's food for a couple of weeks, and finally think we are on the right track. To review, we started mixing 50/50 formula and mama-milk a couple weeks ago, basically dragging out using the mama-milk for as long as possible then. The formula we started on was this hypoallergenic kind for babies with milk/soy protein intolerance, as it's so broken down, their bodies won't recognize it as a cow's milk product. The reason was, Harmony has always been so gassy and sensitive related to her feeds, Kathy thought this would be the smartest route. So we did 50/50 for almost 2 weeks. Then, last week we switched to formula only, convinced the milk was causing all the gas and horrible pain. But then she started throwing up during feeds. After a good chat with Kathy, a very educational appointment at Milk Works, and some trusty internet research, we decided to go ahead and try the holy grail formula called Neocate. What we found out is that 5-10% of babies on the other formula still recognize it as milk proteins. And it would appear that Mama consumes so little dairy (cause gag, milk is cow-juice), that mama-milk potentially had less lactose in it than the formula. So we shot ourselves in the foot in one sense by switching to formula-only, but it did help us to figure out that lactose is probably the culprit. We started the Neocate Friday, and Harmony seems to be feeling better already. If her guts are irritated from the lactose, it could take a bit for them to settle down. But the probiotics will probably help with that, and we are still giving her those for a while yet. Since we switched, Harmony has not thrown up even once. She has spit up a couple of times, but in expected circumstances (burps, while making poopies, etc).
The other interesting development is that Harmony has started coughing more and differently. When she was a few weeks old, she started coughing when her secretions would get bad enough that she'd quit breathing. She would cough to help clear stuff out, to help her get unstuck. This was probably at 2 weeks or so. Well she will cough now every once in a while still, just when she gets really gurgly. It's been getting more frequent, like if you lay her down and spit runs, she cough once or twice, then work on swallowing, which is quite the production and takes her a bit. Well Harmony has started coughing multiple times, like really working to get the pooled secretions up to be swallowed down, whereas before it was more just knocking them around, sometimes it cleared them. We've been paranoid that she could be aspirating her food from refluxing, as this has always been a concern for her. But she's showing fewer signs that she's refluxing in general (head turning, arching her back, flat out spitting up), that it just doesn't seem to fit. And her swallow is getting stronger, and she somehow managed to avoid aspirating her whole time in the NICU. So it just seems unlikely that she's backtracking. We will mention it to the nurses to watch her this week, as they will have a much better idea. And we have another appt with Kathy next week and can discuss concerns then. But for now, we are taking this as a sign on progress for keeping her airway clear, that perhaps her sensation in her throat is increasing. Who knows, maybe the next step will be swallowing far more frequently to not even need to cough it back up to clear it.
Another sign of progress and increased reflexes (like her swallow reflex) is that she blinked when her eye got poked at. Thus far, she's been rather guinea pig-like in that she doesn't blink if you tickle her eyelashes (or accidentially poke her eye...it happens). We are hopefull that this keeps getting better also.
We have a follow up appointment with the neurologist on the 24th, and are starting to get very anxious for that. Just to have her re-evaluate her, and to talk about getting another EEG. The EEG is what shows if there are still spikes in brain waves, meaning potential seizure-producing activity. The first EEG (at 1 day) was all over the place, confirming she was having seizures. The second (maybe a week later) still showed spikes, but not as erratic. We are really hoping for no spikes, meaning no more chances for seizures, and maybe she can eventually get off the phenobarb. Could just be a pipe dream, and she may be on that for the long haul, but it's still what we are hoping for.
In general, Harmony is getting bigger and stronger every day. She's not far off from outgrowing her 0-3 month jammies length-wise. No idea where she gets this tall and skinny thing from, as it's sure not her Mama. Based on our home scale, it would appear she has broke the 10 lb mark. And she can tolerate position changes and less support (ie no neck roll when laying flat) much better. She is pretty mobile (finding her in odd places in her crib, trying to leap out of your arms when you are holding her, etc) and is generally just really strong. Go Harmony!
Oh, and for anyone who didn't see, the latest pictures show Harmony wearing the infamous Husker onsie. Not only did she wear it Saturday, but she wore it all day long just for all you Husker weirdos. And it's a 6 month onsie, so she will have plenty of room to grow and wear it through the season. Though this is the ONLY piece of Husker-garb this poor little innocent baby will ever wear. It's only because we love her aunt Amy :)
PS: I had to ammend this. I got so caught up in all the formula details and whatnot, I didn't share the most exciting part. The reason we think this formula is working out is because Harmony is OBVIOUSLY feeling better. She doesn't wake up pissed off, she doesn't cry herself to sleep (mostly, she has her moments still). She was in her pack n play Saturday just kicking and wiggling and watching her dangling monkey head mobile, then looking over at Dollie the Dolly, grunting and blowing bubbles. Dare I say ... SHE WAS HAPPY. This formula costs a bit over $8 a day for now, though we may be able to get it via WIC. But even if we can't, we so totally do not care. Because it is so wonderful to be able to see her HAPPY. Don't get me wrong, she's still a baby and cries and fusses and whatnot. But she is so very different already in just a couple of days. So THAT is why we think we are on the right track.
Another one bites the dust
So the nurse yesterday wasn't as stellar as the one Monday. Plus, Harmony had a bad day with lots of gas pains. And I'm sure having strange people caring for her again is sucky, since she has had over 3 weeks of just Mama, Daddy, and Grandma. As for the gas, we are trying 100% formula, as (long story) there's a good chance the Mama milk is what's hurting her tummy. But besides that, the nurse commented both yesterday, then again this morning, that Harmony was "being a poop" yesterday. Well, that struck us wrong, ya know? She's not a poop, she's in pain. And she's 2 months old, she can't even BE a poop yet. Also, the nurse was late both mornings, liked to chat about everything BUT Harmony (her kids, dogs, whatever), and took two personal calls in the 10 minutes this morning before Mama left. Oh, and she wears a bottle of perfume a day. Hi! Baby with respiratory issues! Yeah, totally just picking at her now. So Mama called the supervisor (who was actually the nurse Monday) and gave her the low-down, and "fired" her. Favorite-nurse-Catherine gave us wonderful advice before we left UNMC that if we don't click with a nurse, or there's just weirdness, that we have to address it. The supervisor (Jessica, current favorite PDN nurse) was very cool about it and said it's best to nip it in the bud. So fired-nurse will still be there the rest of the day, which is ok, she just won't be back after this.
So add that to the two NICU nurses we "fired" at UNMC- we are on a roll :)
Our first day of PDN
Private Duty Nursing started today, and in summary, it went really well! Mama and Daddy got in the groove of a morning routine, Daddy went to work and Mama fed Harmony breakfast. Then the nurse got here and took over so Mama could go to work. Then Daddy got home first and fed Harmony supper until Mama got home. Harmony had a really good day, though made the nurse hold her for much of it. The nurse didn't seem to mind much though. Harmony did lay down just fine for Daddy after work, so it seems she's working the system already.
Harmony's reflux seems to be doing better these last few days on her new dose of meds. This seems to be helping her de-sats also. She also has a new mix of phenobarb that is much more concentrated, meaning she has to take in way less volume. It's also missing color, flavor, and some alcohol, so it irritates her tummy less. This means no more regular urping each night. Harmony still has runny poo and gassy guts, but her Dr feels we are on the right track and just need to give it time. We did start probiotics Friday, and are excited to see how much that can help. She also has some kind of rash that's like seborrheic dermatitis (Mama knows all about this), but daily baths seems to be helping. The dr says it's a normal 2 month old baby thing, so we're just waiting it out.
HARMONY GOT MEDICAID!
It's been a long and confusing and messy road, but we found out today that Harmony will get Medicaid. And just "normal" Medicaid, not via the state waiver, so there's no cap on the nursing hours. Meaning we will for sure get our work hours covered, and possibly some respite. We are still waiting for the Medicaid to get activated, then will get more details. This is also exciting because whatever insurance doesn't pay for for Harmony's July-August bills (at the NICU), Medicaid will. It won't cover June, but that's ok. And we'll only get it through December for now, but that's far enough away, who knows what will happen between now and then, or what life will be like. Hopefully Mama will for real be back at work next week. We have occupational therapy coming tomorrow, as well as someone to restock our supplies, then a couple of dr's appts Thursday, and the nurses will come to "train" on Friday in prep for taking care of Harmony.
As for an update on Harmony, she's had a rough time of it lately. The last couple of days she has really struggled to keep her airway open. We just figured out today that it seems her reflux is really acting up, which irritates/swells her throat, making it hard for her to breath. Kathy, the NP, has us upping her Prevacid just a bit, and splitting out to twice a day. We just started that, so we don't know how much it will help yet. She is also still really struggling with gas. Hopefully as she gets used to the formula combo that will improve.
Wow, impressive!
So we met with the new Pedi yesterday. She's actually a nurse practitioner, which is awesome, as our experience with NP's from the NICU is that they are the ones that know everything and run the show anyway (vs the Neonatologists) :) But seriously, we sat and talked with her for an hour and a half, just filling her in on everything. Oh, and her name is Kathy - do we have good luck with Kathy's or what!? We totally felt like we clicked with her, she took our concerns seriously, addressed all of them (big and small), and is just being nicely "take charge" about taking care of Harmony. But here's the kicker and why I'm impressed:
Harmony's phenobarb level hasn't been checked since she was discharged, and she has grown a bit, so we were concerned that she was still in the range. They did a heel stick yesterday to check it, and said we'd probably hear Monday. Kathy the NP just called me...it's like 8:30 am on a Saturday morning. Seriously!? Anyway, her level is actually higher than when she was discharged, our theory being that we are giving it to her in a better way that makes her not barf it up all over the place. But that's a relief to know she's still in the range the neurologist wants.
Along with 87 other things, we talked with Kathy about formula and Harmony's gas. It seems to be getting worse lately, and we started OTC gas drops. She suggested a special type of formula, and gave us a TON of samples to try. Much like the other wonderful Cathy, this Kathy suggested we go 50/50 milk and formula for a while, then eventually go to all formula. But doing that will also make the milk supply that we do have last much longer, rather than just using that up first, then switching. So we started that last night, and between that and the gas drops, it already seems optimistic.
The other huge news is we found out yesterday that Harmony did get approved for Medicaid via a state waiver. Not as good as just straight up Medicaid, as we have a cap as to how much/what type of help we can get for nursing. But that could start as early as Tuesday if all goes well, meaning everyone will be back to work. There are still a few things to iron out with all this, but we are finally moving in the right direction.
Well, we are sitting here waiting for Harmony's first visitors to drop by! (at home, she did have a couple in the hospital) She's napping now in preparation :)
Ups and downs
We are still trying to figure out some kind of schedule, or any kind of normal day. Medicaid is still in limbo, which means we still don't have any nursing care, which means Mama still can't go back to work. Daddy went back to work yesterday. Nights are the hardest, especially since Mama is so tired that she doesn't hear Harmony's alarm anymore if she is sleeping. So for now, when it's Mama's turn to be on call for watching Harmony, she is awake and working (might as well make the most of that time!).
Harmony had a rough couple of days. She had been sick over the weekend with a bit of a fever and some barfing. Then on Tuesday she had her 2 month appt (just a little early) and got shots. One of the vaccines was oral, and Mama and Daddy were not forceful enough in conveying that Harmony is not able to swallow hardly at all. The nurse tried dripping the meds in Harmony's mouth when she was sleeping, which made Harmony (of course) quit breathing. Pretty significantly. We had to suction the meds back out and help Harmony cough to get breathing again. Seemed to have totally wigged the nurse out, and was perhaps a wake-up call to the pediatrician that Harmony for real can't take things orally. Though our initial experience with this Pediatrician was good, this last appt was quite frustrating. We are working on a getting a referral to someone else, a PA in another office, where we'd have a more intimate relationship and she could get to know Harmony much better and have more time to spend with her. So think happy doctor-changing thoughts for us that it will work out and that the PA can take us on.
Yesterday we met with our Early intervention program team to come up with a plan of action and goals and such. There was a speech pathologist and occupational therapist there, and both were very very nice. We already have 2 more appts set with OT to get started working with Harmony. But even just that initial visit was educational. And it's so awesome that they come to our house, so we don't have to haul Harmony all over the place for appointments, since that's quite an ordeal anyway. It's also nice just because Harmony is not busy being pissed or scared or worried about what's going on (since she's just at home having visitors, as far as she knows), so they really get to see her in a natural non-agitated state.
Harmony is still getting used to her "new" tongue we think. She has learned how to spit, like blowing raspberries in the air and spitting out whatever is in her mouth. She can make some monster spit bubbles. Hopefully she still keeps working on the swallowing part of it, rather than just always ejecting stuff from her mouth. She can swallow, and does, just not as much as she needs to. Her gag reflex is just barely there (though it used to be not there at all, and barely there is more than not there), so she doesn't have the normal impulse of "there's junk hanging out back there, I'd better swallow it". She will sometimes cough and then swallow, even big gulpy swallows, so she can totally do it. But we just have to work on her knowing she needs to.
The last update is that we are going to have to switch Harmony to formula. She has had only breastmilk up until now, but several things have come into play that are just making it harder and harder for that to happen. Not the least of which is that it physically takes quite a bit of time to pump enough to maintain and build the milk supply needed. This was all well and good when Harmony was in the hospital, but now that she is home and Mama is having to care for her and also pump, it's just too much. We are happy she was able to get breastmilk for as long as she has (we have about 2 weeks frozen to get through still), and just know that this is what needs to happen moving forward. So the next step will be wading through the murky waters of a million kinds of formula to find what works for Harmony. We have been told not to bother with milk-based ones for her, as she is already having huge gut-pain issues. If anyone is a formula expert, by all means, share your advice!
I think that's everything for now. As always, thank you to everyone for all your love and support and help. We really do have so many people helping us, and in so many different ways. I know everyone keeps asking "what can I do!?" and there's just not a checklist we can hand out. Knowing that you all care, and just the moral support factor is so huge.
Another quick one
Quick highlights:
Harmony had her tongue clipped (finally) Wed at the Dr's. Mama and Daddy had REALLY wanted it done since she was born, but kept getting the brush-off about it. We are excited it's finally done. Harmony is trying to re-learn her tongue now, as she was pretty tongue-tied.
We have confirmed that Harmony likes metal and heavier music. This is what she would have heard before she was born, her first concert was NIN, and she's been to a couple of Dirtfedd shows. Daddy's playlist calms her probably better than the classical CD's we have, probably just because it's what she's used to.
Harmony is gaining weight like a mad-woman. We'll check with the Dr Tue to make sure he doesn't want us to change any feedings, but she was 9lbs 1oz yesterday. She still looks long and skinny, but is starting to get pudgy thighs and fat (vs flat) little baby feet. She is completely out of newborn clothes, and is solidly in 0-3 months.
Mam was finally able to order announcements, and hope to get those in the mail this week. Yeah, a little past the normal time-frame, but we were determined to do it anyway.
Watch for more pics soon, but it's bath-time now!
Might have a minute to type
As expected, life at home is crazy. There's the normal part of settling with a baby in the house, but then of course the added complications of Harmony's "medically fragile" condition. Yes, all new parents are sleep deprived, but this is a bit different. Harmony has been really struggling with her laryngomalacia since we've been home, which translates to: she quits breathing a lot and we have to jostle her, reposition her, or maybe suction her, to help her open her airway so she can breathe again. This is particularly difficult when she is sleeping, since she sleeps so hard, and is a total limp rag at that point. So Daddy and Mama have taken to sleeping in (short) shifts at night to be with Harmony. During the day, we take turns being the one in charge of answering her O2 alarm. At this point, he O2 monitor is basically an apnea monitor, since that's the first sign for Harmony that she is in distress (vs heartrate or respirations, which is what a regular apnea monitor would be checking).
Something that is contributing to her difficulty right now is that she has TERRIBLE thrush in her mouth, and probably has for quite a while. Unfortunately, UNMC didn't catch it, and as new parents (combined with the fact that she's not eating orally), we didn't have a clue. She had her first pediatrician visit Friday, and he's the one who saw it. She also still has a yeast infection on her butt that is taking forever to clear up. This is all most likely from spending her first 3 weeks on antibiotics. Thrush is making Harmony have very thick spit, and that is harder for her to swallow. Not to mention we are told it hurts like a you-know-what. So she's unhappy, and it's probably not helping with her lack of sucking progress. The hitch? The meds are oral, and they are thick. We can't give the meds as prescribed (shooting 1 ml in her mouth) because she would drown. So we apply it with a Qtip and rub it around. This also makes her choke, though not as bad. Generally we have to wait a bit to let the meds sit there, then will have to suction her out or she will just desaturate when she works on swallowing it. So it's been a rough few days, as you can imagine.
We are supposed to get in-home nursing care for her during working hours, then up to 12 respite hours per month to use whenever we want. But the hours don't get assigned until we have someone who says they will pay for it (aka Medicaid, insurance doesn't cover that). I did find out that Harmony's SSI was approved, which means we know for sure she will get Medicaid. But the hitch is that a case worker has to be assigned first. And they are really really behind. Her paperwork hasn't even made it from Omaha to Lincoln yet. Hopefully this all gets done before I has to officially go back to work. My maternity leave is up now, and I will be working from home starting Monday. Daddy is taking vacation time right now, and Grandma is going to try to come and help a couple of days, so we should be able to manage. Her hands on training started last night, as there is a lot to learn. She was at UNMC with Harmony a bit, and also attended the equipment training with Mama and Daddy, but she hasn't had a chance to really put that to use quite yet.
As I said before, Harmony had her first Dr's appt Friday. So that was our first run with taking her and her equipment somewhere. We are getting some interesting use out of her snap-n-go stroller. We brought her home in a car bed (may have mentioned that before), but that was actually worse than sitting in her car seat (supervised still), so this trip was better than the one from Omaha. Start to finish we were out with her about 3 hours, with no major issues. Aside from that, Harmony has not gotten to venture out much. We cannot just randomly take her places at this point, as if she got sick, it could mean a trip back to the hospital fairly easily. She spends much of her time in her room, though when she is awake and alert, we will unhook her from her O2 monitor and carry her around the house. We have adding all kinds of blankets and rolls to her swing and bouncy seat, and she can sit there for a little while. It's good exercise for her to strengthen her muscles.
Well I hear signs that she is working on waking up, so that's all I have time to say. Please keep Harmony (and Mama and Daddy) in your prayers, as this journey is still only just beginning.
Harmony is home!
That's about all I have time to say now, will have more to say as soon as I can!
We are almost home!
We just got the official OK to start "rooming in" tomorrow. This means we will come up after Gabe gets off work, and we will stay in sort of a hotel room for 24-48 hrs (it's across the hall from the NICU, and happens to be where we stayed up here the very first night, so we've come full circle). We will use all our home equiptment, none of the hospital stuff, and will fly solo unless we need help with something. This will give us a chance to try everything out, make sure we know what we are doing, and that there are no hitches. The 24-48 hrs is mostly determined by us, based on how confident we feel about Harmony's equiptment and care. So we will be headed home sometime between Wednesday night and Thursday night. There are still quite a few things that need to be arranged, like getting nursing hours assigned to us...and lots of other things we don't even know about yet. But thankfully, there are people here that tell us what to do every step of the way and arrange for all that for us.
So tonight and tomorrow, Mama will be doing lots of last minute things to get ready for Harmony - like clean the house and go grocery shopping. Thankfully, much of the preparation we did before Harmony was born will still serve us well now - like the deep freeze full of casseroles and the tower of TP stashed in the bedroom :)
We know there are so many of you dying to meet Harmony, and believe me, we are dying to show her off. But it will probably be at least several days of getting settled and into our groove before we will be venturing out much. Mama will probably not be willing to play 'pass the baby' for a long time, as she is feeling very selfish and wants to hold Harmony most of the time. Daddy has to remind Mama that he wants to hold Harmony too :) Be sure to keep watching for updates, I'll keep on posting to let everyone know how we are getting settled!
Funny correction, to me anyway
Someone recently pointed out to me that Harmony did not turn 1 month on Sunday, but rather on Tuesday. During pregnancy, you get so caught up in "weeks" and "how many weeks along" and "how many weeks to go" - nothing is in months, and you are not pregnant for 9 months, but really 10 because it's 40 weeks. So Harmony turned 4 weeks on Sunday, which in my mind was 1 month. But she was born on the 28th of June, so 1 month would really be July 28th, Tuesday. This would all be much easier if we just used a lunar calendar...
Met with the Early Developmental Network folks today. That's the group that organizes help for Harmony (via LPS), so like OT and PT and Speech therapy for when Harmony gets home. They will help tell us, and arrange for, what services she needs (so I don't have to try to figure all that out on my own). We should find out if she qualifies in the next day or two. No reason to think she won't, but they still have to go through the process.
Tonight we are getting pictures taken of the three of us. The March of Dimes coordinator is taking family pictures (nothing fancy) and will burn them on a disc for us to have. I'll be sure to post them as soon as I can, I'm excited to get some pics with us all together! Also, Harmony will be trying on some non-PJ clothes for it. Hopefully she's a happy girl (and awake) so we can get some fun ones :)
Not much to report (that's a good thing)
Harmony's having a good day. She was super smiley at Daddy earlier. He tried really hard to get a picture, but she wasn't cooperating. Right now, they are both napping.
We are starting to get some practice with the G-button. She is not quite up to what will be her normal feeding schedule yet, so the set up is a tad different than what we will have at home. But we know how to hook it up, unhook it, burp her belly (as my mom pointed out, it's vaguely remeniscent of burping a waterbed), and give her her meds. By the time we eventually get her home, we'll be old pros I imagine.
This week we have meetings with the home healthcare agency, as well as the early intervention program people through LPS, to start talking about arrangements for care and such for when Harmony does get to come home. That will definately be an adjustment on our part, having someone in our home all the time, like when we are sleeping. But there are lots of things for us to get used to at this point, so what's one more :)
Harmony is out of surgery and she is doing well
Harmony's surgery was moved from 7:30 to 9:00, then they actually took her back at 10. They were done within the hour, everything went totally fine, and she went to recovery. She spent a bit of time there, as she was very upset (rightfully so). Mama got to hold her in recovery, and that helped a bit. Finally they figured out that getting her back up to her room and settled would be best. Mama thought Harmony was acting like she hurt, and the nurse practitioner agreed, so they gave her some additional pain meds. But mostly, getting settled in Mama's arms, back in her room, was what settled her down. She is now sound asleep, and being monitored closely by her nurse (Karen is back today!) just to make sure she is A-OK after surgery.
Maybe more later, but Mama and Grandma need to get something to eat while Harmony snoozes. I'll post pics of the g-button at some point. It's a bit traumatic to see it on her little belly, but she no longer has her NG tube, so it's a good trade.
Harmony is 1 month old today!
She weighs 7 lbs 11 oz, so she hasn't quite gained a whole pound yet. She only ever lost 2 oz, then the gain has just been slow going with getting her food rolling.
Everything's ready to roll for her surgery tomorrow. They'll stop her feeds tonight by midnight, and take her NG tube out (hurray!). Then they will start her IV and give her fluids overnight.
The only other thing to report is that we got Harmony the CUTEST little jammies. They are for a boy, but they have dinasours on them playing instruments like a little rock band. They say "You rock" and such. But they are also brown, so Daddy calls it her turd suit or turd costume. Mama smacked Daddy in the head for it when he said she looked like a big ol' poop.
Oh, nope, one more thing. Harmony has started smiling! We haven't managed to capture it in a picture yet, but she is SOOOO cute (duh, like that's a shocker) when she smiles!
Well keep her in your prayers, and I'll post tomorrow after her surgery to report in with how well she is doing!
Quick update
Happy 1 month birthday to Harmony on Sunday! I'll post her official 1 month weight tomorrow.
I keep forgetting to share, and this is totally an aside. My midwife made me guess how much Harmony would weigh when she was born, saying if you really press a mom to guess the weight, they end up being pretty accurate. My guess was 7 lbs (I believe at my 38 or 39 week appt, so right before Harmony was born). Well my midwife said by feeling and such, she would guess she was a bit bigger, like 7.5. Well sure enough, Harmony weighed in at 6 lbs 14 oz at birth, so I was pretty darn close!
Harmony's surgery is scheduled for Monday morning at 7:30 - this is to get her G-button. She actually had her PICC line pulled yesterday because it was just causing problems, getting blocked, and getting uncomfortable. So we opted to have it come out, then she'll just get an IV tomorrow in prep for the surgery. But right now, Harmony only has her NG tube in her, then her monitoring probes, but it's been a nice break. After her surgery, she will only have the monitors (and her button, which is not constantly hooked up to something). It will feel very liberating for everyone!
No reflux!
Harmony had her upper GI this morning, and passed with flying colors. They actually said she had NO reflux. So for sure she won't need the extra proceedure, and it's one less thing to stress about as far as keeping her airway clear. We will also ask about if she needs to stay on the Previcid, as it seems like she doesn't need it.
I think forgot in my update yesterday to add two things. If this sounds familiar, oh well. First, they moved her phenobarb from noon to 8pm to try to help her sleep more at night and be awake more during the day. Jennifer-our-favorite-night-nurse said she slept well last night, and had no oxygen desaturations (desats), which is exciting. The other thing that could be helping with her desats is that we have started using saline drops in her nose. One drop in each side to help keep her secretions thinner and more managable (is the hope). Very exciting if something so simple ends up making a huge difference.
We are still working on her sucking exercises, and Harmony gave Mama got a couple of goods sucks on her finger tonight. She gets frustrated with a finger stuffed in her mouth, but it's almost like she's frustrated and concentrating trying to figure out what to do. She is so darned tough and determined!
Monday
Harmony is making progress with her sucking and swallowing, though it is very slow going. The Docs have all concluded that she will need a longer term feeding solution, something she can come home on. So she will be getting a gastrostomy tube (G-tube). First they have to do an upper GI, where the put dye in her stomach and watch to see how bad (or not) her reflux is. If it's severe, she might also have a proceedure called a fundoplication, where they would tighten the sphincter at the top of her stomach. But we are hopeful that she won't need that, as her reflux doesn't appear to be too bad. We will also start working towards bolus (all at once every 3 hours or so) feeds, rather than continuous feeds like she is on now (slowly drips in 24/7). The upper GI is tomorrow, and the soonest she can get the G-tube would be next Monday. We'll have to wait to see if that works out.
We are starting the process for making arrangements for caring for Harmony at home. We are still a few weeks out at best, but we have to start working on stuff now. Harmony will not be able to attend the daycare we had picked out, as they would not be able to manage her G-tube (or any other medical devices she may need). Depending on what type of assistance Harmony qualifies for, it appears the most likely solution is that we would have in home respite care, where someone would come to our house and care for her while we are at work (and possibly other times also). The UNMC staff has been wonderful about introducing us to, and helping us get access to, the resources that we will need to help Harmony.
Though it doesn't change any outcomes at this point, I talked to the Dr again today about when they think this could have happened. Originally they said in utero. Then they tossed around the idea of it having been during labor. All the Docs really think it was in utero at this point. They have reviewed all the information from labor, compared the two MRI's, and asked us numerous questions. All signs point to that Harmony may have been seizing during labor (though there's no way anyone could know that but in retrospect). There is nothing to indicate that her oxygen was compromised at that time, as her heartrate was steady and strong at the time. It was just not dropping and spiking in sync with the contractions like they would normally see (again, most likely because the injury had already happened at that point). Also, when I first got to the hospital, which was very early in my labor, we saw what was most likely a seizure, we just didn't know that's what we were seeing. During a seizure, her right hand jiggled really badly, eventually her left hand joined in also. When they first were putting the monitors on me, Gabe and I both looked down and saw the right side of my belly (where her right arm was) jiggle. It was so odd, and we'd never seen anything like that before, and that stuck in my head. There's no way to know exactly when the inury happened, it could have been that day, or a week before. But there's really nothing anyone could have done to prevent it.
At this point, we are still playing the 'wait and see' game. We will work towards her bolus feeds and proceed with getting the G-tube. She will not be ready to come home until she can handle her secretions better, and some of these changes impact how she is able to handle them. We are starting to use saline drops in her nose to help thin things out, and keep her juiced up. That appears to be helping already, so we are hopeful there. Once she is consistently able to maintain her airway on her own, then we will be able to start talking about bringing her home, but it will still be a few weeks at least.
Who does what in the NICU
Found this on the UNMC site, thought some of you would be interested. These are all the types of people we deal with daily. Some more than others. And some we didn't even know why we were dealing with them at first, not knowing what their piece of the puzzle was yet!
Case Manager:
The case manager is a nurse who has advanced education and follows your baby throughout the NICU stay. This nurse assists you in the transition from hospital to home by coordinating home care needs and follow-up appointments. Clerical Associate:
The clerical associate greets you at the door and answers telephone calls coming into the NICU. They also provide support services such as stocking and filing. Clinical Nurse Specialist(CNS):
A clinical nurse specialist is a nurse who has advanced education and provides leadership for evaluating standards of practice through research. The CNS is also responsible for patient and nurse education. Director:
The director is a nurse responsible for assuring that patients in Women's and Infants services receive appropriate service as outlined in the overall plan of care. These services include the Neonatal Intensive Care Unit., The Birth Place and The Baby Place and 4-West. Lactation Consultant:
The lactation consultant is a nurse with special training to address questions or concerns about breastfeeding. Manager:
A nurse who oversees the operational functions of the NICU and coordinates 24 hour nursing coverage. The manager ensures a smooth transition of care during your baby's hospital stay. Neonatal Nurse Practitioner
The neonatal nurse practitioner is a registered nurse who has advanced education and training in the development, care , and treatment of babies and their families. The nurse practitioner works in collaboration with the neonatologist. They attend high risk deliveries, perform procedures, and particiapte in the ongoing management of neonates. Neonatologist:
A neonatologist is a pediatrician who is board certified and has specailized training in newborn intensive care. Nurse:
The staff nurse is a registered nurse who cares for your baby, develops a nursing care plan and teaches you to care for your baby. Occupational Therapists:
The occupational therapists assess the development of gross and fine motor skills and feeding behaviors. Pastoral Care Services:
Hospital - based religious support staff which provides pastoral care services. Physical Therapists:
The physical therapist assesses early movement patterns, development of postural control, and mobility as related to later gross motor milestones of head control, rolling, and sitting. Resident:
A resident is a doctor receiving additional training to be a pediatrician or other specialty. They work under the supervision and guidance of a neonatologist. Respiratory Therapist:
A respiratory therapist is responsible for the care and management of oxygen, ventilators, and other special monitoring equipment. Social Worker:
A social worker helps you with the non-medical issues such as lodging, insurance, transportation, financial issues, community resources, emotional support, and counseling. Speech Therapists:
A speech therapist is a consultant who assess and works with babies on the development of oral motor skills including the coordination of suck, swallow and breathing during feedings. This coordination process is related to later movements necessary for speech production.
Friday
Harmony has had a really good couple of days, as have Mama and Daddy. Wednesday morning started frustrating because Harmony was snoozing away happily, and the nurse practitioner and student came in to do their quick daily exam on her. It was 9am, so well after 8am cares, when she had been awake. So Mama asked the student if she was just listening, and she said yes. I said because we wanted her to sleep a bit longer, we had an appointment to go to, and wanted to hold her and play when we got back. She appeared to understand. So she listened, the proceeded to unsnap Harmony's jammies, and poke her (they do that to see how fast her skin turns pink again). She then undid her diaper, and by this time, Harmony was starting to wake up and be crabby (wouldn't you?). Mama was SO angry, as she had just discussed with a nurse the day before how frustrating it was for people to come in and wake Harmony up by poking at her, and how Harmony is just pissed off all the time (understandably). Also, because of Harmony's condition, when she gets all worked up, she makes more gunk (like when you cry and you have to blow your nose), so it chokes her and then she cries more because she's having trouble breathing. So Mama rushed over to Harmony and started to help her sit up and cough and such, and Mama also said a few snotty things to the student. Daddy was burning holes in the student and the nurse practitioner with his death-glare, and Harmony's nurse seemed none too happy about the situation as well, as she watched the whole thing unfold too. Then the student decided Harmony's diaper needed changed (which was weird, as it had just been changed at 8, and Mama couldn't smell any poo...), but we were past the point of no return on taking the diaper off, so Mama went ahead and changed it (confirmed, didn't need changed). So Mama put Harmony's clothes back on, got her nose and mouth sucked out, and started trying to calm her down. It took an hour to get her back to sleep. The student slunk away at some point. Harmony's nurse came over to check on Mama, and Mama went off about the whole situation, and how upset Harmony gets, and how it makes her choke, and how horrible it is for her to be so mad and sad all the time. I should also add that this is the current favorite nurse (Cathy), as we've had her several times, she's following Harmony (signed up to request to be her nurse whenever she is working), and is really really good with her (I'll get to that later). So Cathy brings this issue up in Rounds with the Dr's, and they make a note in her chart that they will call the nurse practitioners during cares and tell them when they can do their exam (by the way, this is the only NP that has done it this badly, and she was laughing about the whole deal with the student, and was all "ha, she's waking up now I guess" - so Mama and Daddy really wanted to kick her you-know-what). Also, Cathy made a sign and taped it to Harmony's crib that says "Please see nurse before waking Harmony". Another victory! So is it working you ask? Well the rest of Wednesday was WONDERFUL. We only did cares when Harmony was waking up on her own, or Mama and Daddy woke her up with kisses and snuggles, then after she was up, we did cares while we held her. She gets a little feisty still with the thermometer (which only goes under her arm, could be so much worse), but nothing like she was. We had fun hanging out, reading stories, playing with the mobile, and napping in the chair. The Wednesday night, Jennifer, the favorite night nurse was there, and Harmony had a GREAT night of sleep. Thursday was the first day Mama wasn't up there all day, and the only reason Mama didn't go nuts was because she knew Cathy was there again. After Daddy got off work, Unkie Travis and Mama and Daddy drove up to hang out. Harmony had been bored earlier, and Cathy finally figured out she wanted to read. Herself. "Goodnight Gorilla" was propped up in front of Harmony, and she had fallen asleep reading in bed! Mama and Daddy proceeded to kiss on Harmony for the next half hour, and she'd peek her eyes open to say hi, then drift back to sleep. Finally she did wake up, and we got to snuggle and read and talk and change her panties twice in an hour - she is officially up to full feeds (no more chemical juice in her vein!) and her pooper is sure keeping up! Harmony does NOT like to have poopie panties, and kinda digs not having a diaper on. But that gets dangerous if you let it go on too long. We've had a couple of near misses with both potty and poopie during diaper changes :) Then Daddy got to give Harmony a bath, which is still awkward with her PICC line in, as that arm can't get in the water. But she seems to like the warm water. The baby tub the NICU has is kinda crappy, so Mama is thinking she might have to get one that will work a little better for Harmony. Once she gets her PICC line out (still on track for that coming out after this weekend!), baths won't be as much of an ordeal. And she was so relaxed after, that we snuggled some more, and she fell asleep not too long after.
So....all this to say that Harmony has had a couple of great days. As have Mama and Daddy. And Daddy is off work today, and Cathy is Harmony's nurse today. So we will all be hanging out again all day long, and it should be another good one!
Wednesday
It's been a busy couple of days, plus a lot of info to take in. Harmony actually had her MRI later Monday evening. Her phenobarb levels had dropped too low these last few days, so they were giving her extra doses to get her back up to a safe level. Because her seizures were so hard to get stopped in the first place, they are concerned that if she starts seizing again, they won't be able to stop it. Since the EEG showed seizure potential still, they have to make sure to keep on top of it for now. Anyway, all this to say that she was extra sleepy, so they wanted to take advantage (normally they would have to knock her out, since you have to hold perfectly still for an MRI, but this way they were killing two birds with one stone).
Last night the neurologist called to let us know she looked at the results. She reminded us that the MRI looks at structure, not function, so it still won't tell us what result of the injury is in that sense. But the areas of her brain that showed the injury before are now healed - meaning there is no additional damage (like from when she was extubated and wasn't ready) and no ongoing damage or parts of her brain dying off. So this was good news, and the best we could hope for, as far as what the MRI could tell us. It also probably means that the injury happened not too long before the MRI was taken.
The working theory is that Harmony's brain injury happened during labor and her birth. My contractions were very strong and very close together, which can interfere with the exchange of oxygen in the placenta. It was noted that Harmony's heart rate was not jumping up in between contractions like you would normally see, though I don't believe it was dropping low enough to raise any red flags at the time. They kept me on the monitor throughout labor, but there was (and is) no way to know what was happening. So it's possible that because of how my contractions were, there was an extended period of time where Harmony was simply not getting enough oxygen to her brain. This caused the damage, and the symptoms we saw of that were the meconium staining, blue when she came out, seizures, and her low muscle tone.
The low muscle tone is really the key for her physically at this point, in terms of what she will have to overcome. That is why she had trouble keeping her airway open, why she has trouble swallowing, why she is not sucking, etc. Basically all her muscles, even down to her tongue and throat muscles, are floppy. Muscle tone is not the same as strength, though strengthening her muscles is all we can do to compensate for the low muscle tone. There is no way to know how much she can or cannot improve, if she will ever be able to swallow (or even sit up or stand up or talk, etc). For now, we have some things from physical therapy, occupational therapy, and the speech therapist to work on with her. Other than that, we just have to continue to pray that she can continue to get stronger and overcome the low tone.
As far as her mental abilities, only time will tell. We will have to just see as she grows what she is able to do. The areas of her brain that were affected were higher learning areas, though the brain can rewire itself, there's not a way to know if Harmony's brain will be able to rewire enough to overcome the damage.
So for now, the goal is to get her to full feeds (should be there tomorrow), then maybe by the end of the week she can get her PICC line out. Next would be to pull the NG tube back into her stomach to see if she can handle the food going directly into her stomach. She's got some nasty reflux happening, though it seems to be a bit better. We have to hope she can keep it down. Then we are also working on the exercises (which include her mouth) and will just have to see how much she can improve.
We still have a long road ahead to even get out of the NICU, then an even longer road once we get home.
Monday afternoon
Harmony is right now passing a test with flying colors. She is laying flat on her back, facing forward, snoozing away, and has been for over an hour. They are trying to see if she will be able to be in this position long enough to get her follow up MRI done. The answer appears to be yes! We are hoping for tomorrow, so we will see. But more exciting is the fact that she's doing it. She's protecting her airway, swallowing some, and maintaining her blood oxygen level. Her biggest problem these last few days is her reflux, she'll cough it up and has trouble getting it clear from there. As her muscles hopefully strengthen, her reflux will get better.
Occupational therapy visited her today and looked at her hands. Because she is keeping them fisted, and keeping her thumb tucked in, they put little brace type things on her hands. She is supposed to wear them about 50% of the time, as this will help keep her muscles from shrinking up or getting weak (to the point that she wouldn't be able to un-fist them). Eventually we will have exercises and such for her, but for now they are just concerned with not losing any ground until she is well enough to do more.
The other potential big excitement is that tomorrow the speech pathologist will come to visit. This is exciting because enough nurses have observed her having a bit of a gag reflex now, as well as some lip/tongue sucking, that it really seems to be progressing. The guy that will visit tomorrow is the resident suck/swallow/gag specialist that will hopefully start giving us some ideas for positive oral associations. Right now, if you put anything in or near her mouth, she mostly wigs out because no good ever comes of it for her. She does seem to hate the suction just a little less, as she feels so much better after. But she's not anywhere near being able to breastfeed, or even suck on a paci or bottle, so we want to work towards that next. Every step closer to getting her on 'full feeds' (certain number of ounces per hour) is a step closer to getting her PICC line out, and frankly towards the idea of going home. We still have a long way to go, but she is working hard!
Mama will also be meeting with the social worker tomorrow to start applying for extra benifits and programs that Harmony will need. There are early intervention programs through the school system that she will be able to participate in, and she will also most likely qualify for Medicaid (as the UNMC NICU will most likely max out our insurance fairly quickly, and Medicaid will then kick in).
Saturday pm
Yesterday afternoon was a bit rough for Harmony, as she (we later found out) was having pretty bad reflux issues. We knew it was an issue, which is why they did the NG tube the way they did, but it was making it hard for Harmony to breathe. She had 5 episodes of stopping breathing yesterday from it, which was pretty scary. Part of what contributed was that with getting food into her, her guts are just uncomfy, and she was probably trying to make a poop, and pushing down like that was making her stomach juice back up a bit.
Harmony has been doing much better today though, and only had one nasty spell with the reflux, then a less nasty one tonight before bed. But Mama and Daddy got to hold her quite a bit today, so that was really nice. We had a great nurse who showed us some extra tricks for helping Harmony when she's having trouble breathing too. The nurse also helped us re-tape Harmony's NG tube to her cheek, as it was pulling a bit on her nose. She seems far happier about it now :) They have also continued to up her feeds, and she is up to 6 lbs 15 oz (she was 6 14 at birth, dropped to 6 12 at her lowest, which is really not bad at all!)
In preparation for heading back to Lincoln tomorrow night, Mama and Daddy came in later this morning. Grandma and Grandpa Wagner came to visit, though Harmony slept through it. Then this evening, we made a trip to Toys R Us and bought Harmony a crib mobile. That way when she wakes up during the day when we aren't here, she will have something to look at and listen to. She did look at it a little bit tonight when we were tucking her in, but she much prefers to look at Mama or Daddy. It plays some music, and also has "rainforest sounds" - they are actually really soothing, and Mama and Daddy almost fell asleep testing it out. Daddy also bought Harmony her first Gund teddy. It's a big green frog, because Harmony very often had 'frog legs' in Mama's tummy, which the Physical Therapist confirmed by showing us how her legs and feet curve together to fit (totally normal, that was just the position she preferred). I'll be sure to get pics of both new toys to share!
Friday afternoon
It's been a busy couple of days. Wednesday we had a visit from the neurologist (no update, still waiting to do the MRI) and the Ear Nose and Throat guy. He stuck a scope up her nose and down her throat (it had a red light on the end and was remeniscent of the movie Total Recall). He didn't see anything physical that was preventing her from sucking, swallowing, or gagging. She does have mild laryngomalacia (google it for a definition, but don't read all the worst case scenario stuff, that's not her situation), which is making her noisy when she breathes, but is not causing any problems. Because she's not swallowing, her spit pools and makes her breathing even noisier.
Also on Wednesday, Harmony got her UA out (umblical artery IV), and got a PICC line put in (longer term IV in her arm, the line goes up her arm to right by her heart). This will keep her from being poked all the time, and gives them a stable place to put meds and such. Harmony did NOT like this (she had to be poked 3 times, blew out 2 veins) and cried for the first time out loud. It was pretty hoarse sounding, and squeeky from her irritated and floppy trachea. They also reported that she sucked on the pacifier a couple of times, which is a big deal. Sucking is related to swallowing, and she's not done any sucking to speak of either. At this point, any time you put anything in her mouth, she flips out and tries to spit it out, as no good ever comes of stuff in her mouth (in her opinion). We are trying to work with her and get her used to a finger or the paci a bit, hoping to coax her into not hating it, and eventually sucking.
She also got a NG tube (feeding tube) put in her nose, and started getting breastmilk again right to her stomach. Because of the laryngomalacia, she's more likely to have reflux, so they started her on heartburn meds (can't stop the reflux, but lowers the acidity so it doesn't burn her). Reflux is a big concern, since she's already not swallowing, she runs the risk of asperating what comes up.
Harmony also got to wear her own clothes Wednesday night as soon as her UA came out. Mama didn't have much with her, so it was only a onsie, but it was better than nothing.
On Thursday, Harmony was already having reflux issues, so they decided to put in a new NG tube, and put it in farther so it's just entering her intestines. That will keep the milk in her digestive system (it will still be digested just fine), but will prevent it from coming back up. Getting this tube in was a bit more of a production than the first, trying to get it to go where they wanted. Harmony kept pushing her tongue in the back of her throat, and the tube would come coiling out her mouth, so it took quite a bit of time and effort to get it in there. She was not pleased. They did a couple of xrays to see where it went, then later if it moved through like they wanted - success! The main reason they did this is so they can up her feeds without worrying about her reflux. She's lost a two ounces since she was born, and they want to get her off the IV "food" as much as possible. Mama and Daddy are happy about that, as it seems like the more real food she gets, the stronger she'll be, and the better chance she will have.
The most recent excitement for Harmony was that today her Grandma Marcia came to visit (and bring Harmony some warm jammies with snaps), and she got to take a nice long nap on Grandma's lap. In her new jammies :)
Quick update on Mama and Daddy too. Daddy will be going back to work on Monday, and Mama will be home. We will try coming up in the evenings to see how that works, or Mama may come up during the day some. Then on the weekends, we will come up and stay with friends so we don't have to drive back and forth each day. God has blessed us with so many wonderful and caring people who are helping us right now, allowing us to be here with Harmony as much as possible.
Wednesday am
Finally got the new pics up. I didn't get them up sooner because I got to hold Harmony again this morning first thing. We did "kangaroo care", so I put on a hospital gown, open in the front, then dug her out of all her blankies, and got to for real hold her. Then we wrapped her all up under my gown, and topped her with a blankie. She totally dug it, and of course, so did I. After about an hour, the neurologist stopped back by, so we layed Harmony back in her crib for a once over, then snuggled back down again. She coughed a bit and knocked some stuff loose, so we flipped her on her back and she got suctioned out. Then she stayed on her back on my chest for another good nap. Then Mama and Daddy needed to eat breakfast (it was about 11 by then), so we tucked her back in and she went right back to sleep. While she was sleeping, she coughed a bit and cleared it herself (no suction needed), so that was a big victory. She's still very rattly, but it just seems like things are moving in the right direction.
The other excitement today is that they are going to start her feedings again. This means she has to get a tube in her nose (boo), but they payoff of getting real food rolling again is worth it.
Harmony still hasn't been able to make any noises, her throat and airway are still a bit irritated. But she's only had 1 time today when she was crying anyway, she's just so much more content than she was. I note this because we are listening to the other babies cry, and some of them cry so much that even we can ID which one it is by the voice. There's one down about 4 "rooms" from us that sounds like a kitty cat screaming, and he cries a LOT. But I would love very much to hear Harmony cry still, just since we never have yet.
The MRI is still on hold, though the neurologist says that the longer we wait, the more insightful it could be anyway. She said it's possible with Harmony's trouble swallowing and such that her brain stem was slightly impacted. She said the MRI doesn't show everything, like tiny areas of damage, and we have to look at test results, combined with Harmony herself to understand what's going on. And as far as how severe the damage is or isn't, only time will truly tell. The big hurdle we are facing right now is her clearing her own airway and swallowing and such, so we are very anxious to meet with the ear nose and throat doc (Dr. Lusk, and it sounded like we might see him today, but I'm not 100% sure on that).
So for now, Harmony's throat needs to keep healing from the tube, she needs to keep working on strengthening her cough, and she needs to get food rolling to get her digestive track up to par, as real food will help her get stronger and such.
Tuesday pm
I did forget to say earlier that there was a poopie. It doesn't matter for now, as Harmony's back to not being fed (just relying on the IV), but in spite of how much pooping she did in utero, she had this big giant green/black slimy blow-out yesterday. I think we missed out on the tar stuff, but this had to have been about the last of her meconium. And was probably the cause of her uncomfy guts.
Today when we were doing cares, they are noticing that she's back to having lots of secretions from her nose again. She still sounds terrible when she breathes from the irritation from the tube, but she bubbles out her nose again. Her Dr from last week happened to stop by (that God for small miracles, seriously) and checked her over. He said he's calling in an Ear Nose and Throat specialist to see if they can figure out the secretions deal (that's what's the ultimate cause of all the breathing problems, other things have just been making it worse along the way). Also, the neurologist is still stopping by tomorrow to check in, even without the MRI. And we may hear results from her EEG. So we have a couple of things to look forward to, in terms of maybe some additional insight, new ideas, new information, etc. Not sure how busy of a day it will turn out to be, but I'll post updates just as soon as I can if there's new info. Also, watch for new pictures in the morning. Some with a sticky tape mustache, and now some new ones without!
Tuesday am
Yesterday was a rough day for Harmony. Her nurse was a new one we didn't know, but it was supposed to just be a status quo day, so shouldn't have been an issue. Both the nurse practitioner and Dr were also new to us yesterday, though Karen stopped by again (she was working transport again, rather than NICU). Around noon, we were doing cares, then Mama was going to get to hold Harmony again. We had done it the last two days with no problems, but this nurse was hesitant because of the UA. In the process of getting ready, Harmony's tube became dislodged from her trachea, making it almost impossible for her to breathe. So they removed it, and for now Harmony is breathing, though she is not remotely out of the woods. She is still having trouble protecting her airway (no cough, gag, swallow etc to clear out spit, so it just gets asperated or chokes her). She had trouble getting settled back down and that was just making everything worse. So they swaddled her and she was finally able to sleep, and her breathing was a bit easier (though that term is relative). It was the most peaceful we've seen her since she was born, as she really just fought against that vent tube the whole time it was in. And we can actually see her lips, not smacking and puffy like during her seizures, but just relaxed and comfy. She's even prettier than we thought. I have pictures, but forgot to bring the camera cord today, so I'll have to post tomorrow.
During her nap, Harmony was getting too hot in the isolette, so they decided to move her to a crib. They let me hold her while they were switching stuff out, and she stopped breathing twice while I was holding her. She looks like she's going to cough, but just can't cough out, and her airway would plug. Thankfully Karen had stopped by then (second visit of the day even) and she was available to help, as the assigned nurse for the day apparently thought we were idiots and couldn't tell when she wasn't breathing. Karen had to reassure the nurse that we were right, that she really wasn't. Anyway, Karen helped suction Harmony and jiggle her around to get her clear so she'd breath again. Now they have her laying on her tummy so stuff can drain out. On top of everything, her airway is horribly irritated and swollen from the tube, so it's hard to tell how much of this is inflicted vs not. She's had 2 breathing treatments and a few doses of steroids to try to help with the inflammation. Thankfully, last night our favorite night nurse was here (Jennifer), and that is probably the only reason we were able to leave for the night. Harmony was having trouble getting settled and comfy, and Jennifer kept working with her to get her situated and she fell asleep.
So today, we decided to come in late to skip her morning cares, as when we help it just gets her too active, makes the secretions worse, and she can't get settled. We plan to have a somewhat hands-off day and leave her to rest, as that is what she needs to be able to heal. She did have her EEG this morning, but her MRI has been postponed, as she would have to be laying flat on her back, looking straight ahead, and that's just not a safe position for her. We absolutely understand, but of course are very frustrated, as this just sets everything back in terms of getting any answers about anything. They said they will re-evaluate her Thursday, that maybe if she's doing well they can do it then. So unless there are any other unexpected situations like this, we have 2 days of sitting and waiting and healing for Harmony.
Small victory, I'll take it
So near as we can tell, Harmony is getting gassy after she eats (while stuff is still getting moving down there). So I got her to sleep earlier, then she woke up and was all fussy like last night. So I started rubbing and patting her belly, and it seemed to help, and she finally got to sleep. Not 30 minutes later, the nurse comes in to stick her heel and draw blood from her UA. I was on the phone in the other room, but Daddy was keeping watch and stopped the nurse, telling her the heel stick will have to wait till 12 when we do her cares. We gave in on the UA, as long as she did it without disturbing her (it's just through that IV). Harmony didn't wake up, so it's all good now :) Then the nurse came over to check with us on how we wanted to do noon cares, and she is going to get lunch going first, that way when Harmony starts to get gassy and wakes up, we can do all her stuff while she's awake anyway. And maybe the jostling around will help her toots anyway. We are rooting for a poopie soon, as that will probably make her guts feel better.
Monday morning
Harmony's food seems to be moving in the right direction, just slowly. They aren't feeding her very much at a time, just a bit every 3 hours until things really get rolling. She was very restless yesterday, and last night after her 9pm cares she was still awake at 11. We couldn't get her to go to sleep or to settle down. The night nurse last night I think wanted us just to leave, thinking she'd settle fine if we did. But normally we can just lay our hands on her and she'll chill and fall asleep, so this was weird. Finally around 11:30 she was not thrashing as much, so we went ahead and left, but it was so hard. This morning she was pretty calm, her cares went well, and I had her sleeping within 10 minutes, so she's having a better day so far. It's so hard because they have her on a schedule, and of course her waking and sleeping doesn't always match the schedule. Some of the nurses are pretty good about going with the flow a bit, but others are just all about the schedule. Then of course the nurse practitioners will come in and the pediatrician will come in, etc etc. I've decided for today to be a little militant about when people are touching her, so she can really get some sleep in between things. You want to listen to her or look in her eyes, then you can friggin come back later. Also, this afternoon I will be holding her again (I just told the nurse that, I'm over asking) so she can get a good nap. There is so little I can control about her comfort right now, so I'll do what I can whenever I can.
Finally added people
I'm not quite on top of my game right now, and just figured out how to approve requests to add. So for all of you who tried to add yourself days ago, sorry, that was my fault. Now you should get emails when I make updates.
This has been a fairly quiet day, which has been nice. Holding Harmony this time was even better, as we had slightly less packaging between the two of us. She still has her arterial line in her belly button, so we still have to be very careful, and can't just hold her like normal. But that line is keeping her from getting her heel stuck several times a day, so it's a good trade-off.
She just had her second "meal" of the day, and all is still well with "eating." It's so yummy, she slept right through - that's good, as that means it's not uncomfy or distressing or anything.
Tomorrow should just be more of the same. Not sure if we'll get to hold her again, as that depends on the nurse (if they are comfortable with it), and not sure yet who we will have. Today was Anna, who is one of our favorites, and we've had her 3 times now. Our other favorite is Karen. We had her twice, but she called once since then to check on Harmony, and even stopped in today (she was working in Transport rather than NICU) to see how we were all doing. She has been really wonderful, and she has had a couple of really good conversations with us. I'm in awe of these nurses, the ones like Karen especially, where she is playing baby nurse, family nurse, family counselor, etc. It takes a very special person to be able to do this job as well as she does it.
Happy 1 week birthday Harmony
We got to hold Harmony today (and she took a lovely long nap), and she got to "eat" for the first time. They are starting to feed her the breastmilk I've been pumping and storing, though it's through a tube that goes to her tummy at this point. But she did great for the first time, it all stayed down, so no baby reflux happening. This means she gets more every 3 hours. She has an xray scheduled for tomorrow to check out her guts and how they are handling the food (they might be sluggish because of the meds).
I GET TO HOLD HARMONY TODAY!!!!!!!
Quick update, as I'll get to hold her within the hour. She seems to be able to breathe on her own, the concern is still about protecting her airway. If she can't swallow, spit and such will pool in the back of her throat (without the vent tube in) and block her airway. So for right now, the plan is to leave the tube in until her follow up MRI and EEG Tuesday. Then they will have a better idea of what's going on, to have a better idea about if she can breathe without the tube. We would hope to hear results from those tests by Wed or Thurs at the latest.
She still has her umbilical cord IV, which is why we have not been able to hold her. It has to remain VERY secure, as it's in her artery. So if it were to come out, get knocked around, etc, she could very quickly bleed to death. Holding her with the vent shouldn't be an issue. There won't be a lot of moving around, just kinda holding her still, but I plan to make the most of it. I ran out to the car and got my boppy and I'm ready to roll. I may actually hold her just in my sports bra, as I'm just dying to touch her as much as possible. So I'm not going to promise any pictures yet ;)
Other than that, we are in a holding pattern, which is nice in one way, but of course we are anxious for answers. I will be driving back to Lincoln tonight to do a few things, and Gabe will visit too. Got to go for now.
Friday pm part 3
I guess it's technically Saturday morning, but close enough. Around 1am, they turned off the vent, but left Harmony's tube in, to tenatively see if she can/will breathe on her own. It's a particularly good time to test it also, because she is really really asleep, and that's especially when she seems to shut down. So far she is breathing, though not as much as they would like (she should be at about 30-40 breaths per minute, she's averaging right now maybe 15). Her blood oxygen is staying at 100% based on her foot sensor, and they will check her blood itself again at 2:30 to verify. Assuming that confirms she's still at 100%, they will leave the vent turned off for now, while keeping a close eye on her.
I will say that UNMC is far better equipped to handle what is happening with Harmony (vs St E's). The nurses work roughly 7-7, so she has one nurse all day and one all night. There have been a couple of repeats, but usually it's someone new each 12 hours. Everything is computerized, and they brief each other for about an hour overlapping (so they are really working about 7-8). Then her nurse sits right outside her room facing a monitor, and are right on top of anything that happens. It helps to set our minds at ease when we have to finally go to bed for the night, knowing they are very closely watching Harmony all the time.
Depending on how the rest of the night goes, we'll see what tomorrow will bring. There are still lots of concerns about removing the vent, like her airway closing off, her secretions blocking it, etc, so not sure what or when the next step will be.
Friday pm part 2
The neurologist showed us Harmony's MRI and talked us through what they found. It's not as simple as just saying X part of the brain was damaged, therefore Y will be the outcome. The brain will re-route itself, especially in a baby, and no one can predict what exactly will happen. Also, we still don't know the severity. So they are repeating the MRI on Tuesday, as well as the EEG (since the last was when she was still very heavily drugged up). They can use this to compare to the first.
So right now we are back to waiting. It sounds like within the next 24 hours, we should have at least some answers about Harmony's ability to breath on her own.
Friday pm
Been trying to post an update since this morning, but it's been a whirlwind of a day. We had a visit from family, Grandmas and Grandpa and such. Harmony is now much more awake and active, as she's only on 1 med and they are lowering the levels just a bit. But this also means that she wakes up enough to get really mad about the vent, and even the O2 sensor on her foot. She spends much of her awake time crying (she can't cry out loud because of the vent, but she works it with the tears, mad face, and beet red head), kicking her foot to get the sensor off, and rubbing her hands all around her face and trying to pull away from the vent. Mama and Daddy can usually get her settled after a bit, but she makes quite a production of it.
They adjusted her vent settings today (pressure and rates and such), and she's actually doing much better, and is back to breathing over the vent really well. The vent still breathes with/for her a minimum number of times per minute though. The plan is to actually turn the vent off (but leave the tube in place) as a bit of a test drive to see how she does. It can be set so if she doesn't breathe on her own for a set amount of time, it will kick back on. So it's not as scary as just simply extubating her again. There are still concerns about removing it, even if that goes well, because of all the secretions she is still dealing with.
We also met with the neurologist again, a different one than before since they rotate, and she was really awesome. First, she was so much less clinical in how she evaluated Harmony - talking to her, just being very kind and gentle. But she was also really straightforward about everything, answered all the questions we could think of. Many answers were still "we don't know yet" but we did learn a bit.
I will have to continue this later - things are just non-stop here. Very quickly, thank you again to everyone. I can't even begin to say thanks to my "mystery friend" (I know who you are) who dropped some things by, as well as all my Gallup family for the incredibly generous and thoughtful gift basket. I think I am still in shock, and don't have the words just yet to express my thanks.
For real, more updates later tonight.
Overwhelming love and support
Rather than just a play by play, I figured I'd take a second to post something a little more personal. Thank you to everyone for everything - there are so many people praying for us and for Harmony, we can truly feel God watching over us and helping us through this time. We can't change what has already happened, or the circumstances in which we find ourselved, but we can pray for God to help us to get the the outcome that is best for those given circumstances, and for him to be with us (and with you all) in the process and after.
We really don't know what to expect, and it's a rollercoaster from one hour to the next. Though Harmony is in the big baby box, that's to keep her safe and snug, but not separate her from us completely. We have been able to open up the box for quite a while last night and this morning so we could love on her as much as possible. She did open her eyes just a bit, and I'll post some updated pictures shortly. They stopped the second anti-seizure med this morning, so she could possibly become more reactive in the next day or two from that. We gave her a little baby massage and workout, because she's retaining some fluids from just laying there (she was 7lb 7oz last night, which everyone agrees sounds high). Her guts have gone to sleep (probably from the meds) but if they get going they will try to feed her (through a tube) some of the colostrum I've been collecting.
We are on a bit of a waiting game right now, just waiting to see if she starts breathing herself again, rather than rely on the vent. Waiting to hear from the neurologist on any new insights from the MRI. Waiting on the metabolic tests being sent off. Though no one thinks that's the cause, they are just ruling everything out. We are taking advantage of the time that we are able to spend with her, taking advantage of every little movement and reaction, and loving on her as much as we possibly can.
Thank you all.
Thursday am
Discouraging morning on Thursday. Yesterday, Harmony had been breathing over the vent really well after they re-intubated her. But this morning they had to suction quite a bit of secretions from her again, and she’s not currently breathing on her own at all, but is letting the vent do all the work.
Wednesday pm
Tests after re-intubation show that most likely only very mild additional damage may have been caused. It's pretty hard to say, especially since we don't know what her starting point was yet.
The radiology report came back from the MRI. It showed areas of abnormality, but what that actually means in terms of function of her brain, what those areas control, etc is still unknown. We are waiting for the pediatric neurologist to review the report to have more insight. Basically that means there are areas of her brain that were deprived of oxygen at some point. The catch is, they don't know when it happened (no way to know), so it's hard to interpret the severity. They related it to hitting your thumb with a hammer - right away it doesn't look too bad, but after a while it starts to get big and puffy and red and looks worse. So we don't know if we are looking at the damage right after it's happened (meaning we can't yet see how severe) or if it's been a while and this is the extent of it. It's basically a waiting game in that respect.
Thought the seizures have been the focus, that's one symptom of the damage. The current, more concerning symptom, is the fact that Harmony is having such trouble breathing on her own. She has already been resuscitated three times in the short time she has been here, and there is no explanation for why she is breathing so well on the vent, but then is unable to by herself. Today’s setback was very unexpected for everyone, and today was also by far the hardest to bring her back. They are still weaning her from the anti-seizure meds, which are downers, but it doesn’t make sense to blame those, as they were a constant on and off the vent. Right now they will continue to wean her from the drugs, as long as she remains seizure free. But they will eventually remove the vent again to determine if she is able to breathe on her own.
Sunday - Tuesday (no new info, just updating the title)
Harmony was born Sunday morning at 8:01 am (6-28-09), two days before her official due date. My water broke while I was pushing, and there was lots of meconium in my fluid. This means she was pooping a lot in utero, which would also mean she was getting it into her lungs and sinuses. So as soon as she was born, rather than get to hold her, they whisked her off to the baby warmer to suction her out. Unlike amniotic fluid, if that poop stays in there, it can cause an infection, so they have to make sure it’s 100% cleared out. Right away they noticed her smacking her lips, and commented that she’d be a good nurser. They suctioned for quite a while and kept getting more fluid out, then finally let us hold her for a bit. She did not cry, just whimpered a bit, as she couldn’t take in a good lung-full of air. I tried to get her to nurse, but she wouldn’t latch on, despite all the lip smacking. They took her again to continue suctioning her, then said they wanted to take her to the nursery to keep watching her to make sure all the fluid was out. While in the nursery, she continued smacking her lips almost constantly, and they started to notice other weird behavior they though indicated she was having seizures, so she was sent to the NICU. They did a CT scan right away to check for bleeding in her head, and everything looked fine. They also did a lumbar puncture to check for signs of infection, specifically in her brain (like meningitis). That all came back negative, so they did and EEG (measures her brain waves through little electrodes taped to her head) to confirm she was actually seizing. She was, and almost non-stop. They started her on her first anti-seizure medication, though it takes a while for the levels to buildup in her system, so we wouldn’t know right away if that would stop it. And they had no idea why she was seizing. When she was not quite 24 hours old, they allowed me to hold her for about 20 minutes. She was very sedated, and still having seizures, but it was wonderful. Her breathing was still very rattled through her nose, and they were suctioning often still.
They began consulting a pediatric neurologist, a genetic specialist, etc to start looking for answers, but when she was maybe 28 hours old she quit breathing for a bit and had to be resuscitated. The seizures were causing her to hold her breath, so they decided they would intubate her to protect her airway. They also decided at that point to transfer her to the NICU at UNMC in Omaha, since much of the testing that would need to be done would be done outside St E’s anyway, and UNMC is better equipped to handle the situation. We asked if we could hold her before they transported her (before they intubated her) and they said that would be fine. They handed her to me and she got really floppy and her lips started turning blue. She stopped breathing again, and they grabbed her from me and resuscitated her again. Within 2 hours she was intubated and on her way via ambulance to Omaha. They wanted to Life Flight her, but the helicopter was unavailable. Though the ambulance was a special NICU one and was equipped basically the same as her room at the hospital, so it was safe.
Once she got to Omaha and got settled in, they started her on her second (in addition to the first) anti-seizure medication. She was foaming at the mouth from being intubated, though they have not needed to suction her nose since she has been here. Tuesday she was still seizing, so they added the third (and last available for a newborn) anti-seizure medication. All three are downers, so though she was somewhat breathing above the vent (meaning she was breathing herself more than the machine was for her), they needed to keep her intubated because the meds could potentially suppress her breathing too much.
On Tuesday, several doctors came by to evaluate Harmony, review her notes, ask us questions, etc. Her seizures had stopped at this point, so they repeated the EEG, and ordered an MRI to get a better picture of what’s happening in her brain to cause the seizures. The EEG showed no seizures, but that could just be because of the meds, not that the erratic brain firing had truly stopped. The pediatric neurologist suggested they begin removing the drugs one at a time to see if the seizures come back or not. It could take a few days for the effects to wear off, so the results would not be apparent right away. She remained intubated Tuesday, though they said they may try to remove it in the near future to see if she would breathe on her own. The metabolic specialist stopped by also, indicating they were sending several blood tests and urine tests to varies specialty labs to be reviewed to see if they could determine any cause for the seizures.
Wednesday she still is not showing signs of seizures. The third med was stopped last night, and she was continuing to breathe above the vent, so they decided to try to remove the tube. That didn’t go well, as Harmony would not start breathing on her own, so they re-intubated her. We noticed that she did not gag when the tube was removed, so this renews the earlier concerns that she is not able to swallow and/or does not have a gag reflex. We are waiting to hear if they think that could be caused by the drugs, or if it would be a concern anyway.
They are re-intubating her now as I type, so that is the most up to date info I have.
Major setback, took 45 min to reintubate her. She barely had any O2 for 20 min. Waiting to find out what kind of damage did or didn't happen. Probably won't update till later.