Never in a million years did I ever think Brian and I would be going through such a whirlwind of events. Our love continues to carry us through this emotional journey, bringing our family closer together as we watch Seth fight for his life. Being so far away can be frustrating at times, so we welcome you to join us daily for updates on our little man in hopes that it can help bridge the gap between the miles.
Seth Declàn Grogan was born at 29 weeks gestation by emergency c-section on February 19th, 2011 due to severe preeclampsia and Intrauterine growth restriction (IUGR). He weighed 1.1 kilo and was 39 centimeters long. Since his birth, we've come to know the roller coaster life of the NICU. Join us on our journey through our ups and downs as Seth fights for his life and we all learn just how precious every moment that passes truly is...
I just realized that another week has passed and I have been neglecting the blog. With so much going on here and a sickly little guy on my hands, each day seems to fly by so fast sometimes, I find myself sitting at night wondering where the day went. Seth has been growing like a weed this last couple weeks. He has a doctor's appointment on Thursday so it should be interesting to se what he weighs now. At his last ER visit for his reflux (yep - in the ER once again) we learned he jumped from 5 pounds 10 ounces to 6 pounds 15 ounces in two weeks. Needless to say, he's starting to really look like a baby and fill out nicely. I'll update more when I have two hands. For now, I have a sleeping baby in my arms :o)
This week has been a bit of a rough one for Seth. He's developed really bad reflux and spent the better part of a night in the ER on base because he couldn't hold anything down. Poor little dude's throat hurt so bad that he could only take cold bottles for the next couple of days. He was put on medication for the acid and seemed to take well to it for the first day and then it slowly crept back to haunt him. So now, we're trying the medication plus thickening his bottle with rice cereal. So far so good and he's been more comfortable since.
Seth got circumcised on Thursday afternoon as well. He wasn't too happy about being undressed but once he was placed under the radiant warmer and had his pacifier dipped in the glucose solution, he was in heaven and fell asleep. It wasn't until the doctor (who he tried to poo on, cleaned him up and put a diaper on him that he got upset again. Everything's healed up nicely and the only outcome of it all that I'm not enjoying id his new ability to shoot pee halfway across the room during his diaper change. His poor Cat in the Hat diaper stacker sure got the worst of it!!! lol
Seth's a happy guy who sleeps all day but when he's awake, he's alert, he just hangs out in his boppy and stares at his dad or me. He LOVES to eat and at his last appointment tipped the scale at a whopping 5 pounds, 11 ounces. I'm thinking this week he'll easily be a 6 pound baby. He'll be exclusively cloth diapered this week after I finish up sewing all the liners for the diapers and get a bit more organized in the nursery for it. I don't want Brian to be overwhelmed at first so I want to make it as simple as possible. :)
Today is Mother's Day and I thought it would be appropriate to update Seth's blog on a day that I am truly grateful to be typing with him sleeping in my arms. It's been an amazing journey these last eleven weeks. Seth's due date was yesterday and the day was celebrated with mixed emotions. There is so much guilt that rises within me when I look back and think about what Seth has been through. Wondering if I could have prevented what happened or if I could have fought a little harder to keep him inside longer... would it still have been so tough on him? But there were also the moments throughout the day where I could do nothing more than just stare at him and think "We did it. We made it through little man - there's nothing stopping you now." It's these moments, when he's sleeping in my arms, that I am comforted with the thoughts of being able to watch him grow and accomplish anything he sets his mind to. I don't really know how we got through these roller coaster period in our life, and I know we still have a few speed bumps on the horizon but as someone once said in a movie I watched, "You just do what you have to do and then when you look back at it, you wonder how you did it. I don't know how it'll work. It's not always easy but you find a way."
We're still waiting to find out more about Seth's brain cyst and how it'll affect him. We can only sit and wait while we fight the Spanish medical system and try to get him an appointment for an MRI. We also got bad news when we took him to his last opthalmology appointment. It seems that although his left eye is perfect, his right eye is showing signs of ROP (Retinopathy of Prematurity). When babies are born early, the blood vessels on the retina are not fully developed. After birth, the vessels may begin to grow so quickly that their growth damages the retina. Retinopathy of prematurity (ROP) is the name for the improper growth of the blood vessels on the retina and the damage caused by that growth.
In most preemies who develop ROP, the growth of the retinal blood vessels will slow down on its own, and vision will develop normally. Some premature babies, though, develop severe ROP. At this stage of Seth's ROP, the growth of his retinal vessels is moderately abnormal and the retina is partially detached, effecting the peripheral vision in his right eye. The doctor explained if there were any part of a person's vision that would be the best to not have, the peripheral vision is the best but as a mother I found no comfort in his words. I mean, what if my kid grew up to be a raging redneck hillbilly who wanted nothing more than to drive Nascar. Well, you can't drive Nascar if you can't see the wall.... So knowing he may have difficulty doing certain things tugs at my heartstrings but we'll just have to wait and see what happens. The problem is that if his condition were to get worse, the entire retina could detach. Well, leave it up to the good ol' Spanish hospital who says they want to see him in a month. A month?!? Needless to say, our pediatrician on base is now reaching out to specialists who may med-evac Seth if they feel it's necessary to get immediate medical care for both problems before the Spanish will see him again.
The days are getting hotter here and Seth has been more and more alert as each day passes by. He's a cutie, this one. I think I'll keep him :)
Go to sleepy little baby...
Yesterday was Mother’s Day here in Spain and I was surprised in the morning with the most beautiful flowers and a card from Seth. I thought maybe he would extend his gratitude and sleep as well as he had the night before, and he did for a little while, even sleeping in his crib twice, until about 3:30am when he decided it was time to wake up and raise hell. But although I would have rather been sleeping, it was great to have modern day technology and talk to friends back in the States. While talking to Joni, she told me about something called “The Happiest Baby on the Block”. It’s a Dr who has mastered the art of settling crying babies and getting them to sleep for longer periods of time *think of him as the Cesar Millan of babies*. I was instantly intrigued and purchased the set. Today, I finally received the sleep positioning items in the mail that I had ordered in February (that’s another story entirely). With the swaddling techniques I learned from the You Tube excerpts of Happiest Baby, and the positions I placed in his crib with the wedge, he slept for a little over 3 hours straight. I can’t wait until I get the DVD to see what else he has to say. I can see a small light at the end of the tunnel and just the thought of some good naps for me as well makes me smile.
A Premature Baby's Prayer & The Preemie Experience
A Premature Baby's Prayer
God bless the little child behind this plastic wall
for all he knows is the ringing of the bells and
the blurred images around him. He has been taken
from my womb without warning and I long to hold him
in my arms.
Lord, I ask in your name that my child be healed.
I am willing to accept your decision no matter what
it will be. I am willing to take on the responsibilities
for caring for this child. I am willing to give this
child love and understanding no matter the cost.
Please Lord help me to accept reality and what has
happened without explanation or warning. Help me
face the fact that this is not my fault and that
I was given a special task to complete here on Earth.
God give my child the strength to make it through another
second, minute, hour and day as each moment is
a blessing and a triumph from heaven.
God, may you give the strength and compassion
to the caregivers and nurses that take care of my child
May you keep my child protected and free from all injury
Please take away the guilt and burden from my heart dear
Lord. It is heavy and I feel it is all my fault.
Take it away dear Lord. Sweet Jesus allow me the strength
and understanding I need to communicate with the Doctors
As you see dear Lord, I am at your mercy for the life of
my child. Please leave him here on Earth and know that
I will provide all the love and understanding that
this child needs. I accept the challenge and will be
your humble servant dear Lord.
The Preemie Experience
The preemie experience is the shattering of all your dreams for a normal, healthy delivery; of the ability to
carry home a beautiful squirming bundle after a short stay in the hospital.
It is lying there in your hospital room listening to the happy sounds of whole families joined together by the
birth of a grandchild, cousin, niece, or nephew, and knowing that your child is laying alone and may not
survive long enough for you to see or simply touch.
It is that first glimpse of a skinny, scrawny, not much bigger than a baby doll child and feeling, fear, awe, and
joy for such a fragile soul.
It is sitting by your baby’s “bedside” day after day, week after week, month after month, alternating between
the emotional high of “Look, his eyes are open,” or “He’s crying!” and the lows of “I’m sorry,
Mrs. Grogan. Something has shown up in Seth’s ultrasound,” or even “There is nothing we can do…”
It is hearing the alarms go off for the twentieth time in less than fifteen minutes because your child has once
again stopped breathing.
It is watching children that are close to dying around you, wondering if your child will be next.
It is hearing your child’s cry of distress as the nurses insert yet another IV and do another round of daily blood tests.
It is meeting other parents of children who are doing far better and wondering, “Why me?”And meeting
parents of children who have serious problems or deformities and praising God for His mercy to your
child and feeling guilty because your child is alive and someone else is grieving for theirs
It is days of nightmarish testing and coping with less than positive results to the tests.
It is days of joy at seeing the first eyelash appear, the child gain a whole ounce in one day, and two bright
shiny eyes look at you and into your soul, and knowing that your child now recognizes you as Mommy or
Daddy; or perhaps looks at you and does not see you at all…
It is that final hurdle before coming home!
It is the joy of just being away from all those nurses and tubes and wires and beeps, and walking into the
nursery you hastily prepared because, after all, the child wasn’t due for another three months!
It is the final realization that developmental delays have to be dealt with, that reflux is a normal and
unfortunate occurrence in most preemie, and learning the constant fight to gain weight is in direct
proportion to a preemie’s ability to do so.
The preemie experience is a journey
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,
This child is yours,And you will love this child no matter what.
(by, Sandra D Moore, adapted for our experience)
Sneak Peek of Seth's first photoshoot
I keep forgetting to include the link for the sneak peek picture from Seth's first photo shoot for those of you who haven't seen it. Heather was so incredibly patient with us and after more than 5 hours of stopping and going, countless props being peed on and one cranky little man, she got some incredible shots...
Hanging out with my pal
Today was a nice relaxing day around the house. We didn't have any appointments except for the Language and Speech therapist who came to the house to see Seth around 10:30. She said he looked really good and told me what to look out for while he's eating that may develop into problems down the line. She was impressed by how much he's eating these days and left us with a couple books to study.
After she left, Seth enjoyed some quality kangaroo care while I did picked up the house and we did laundry. He liked how warm the towels were when we were folding them. He was cooing from inside the sling each time a towel pressed against him. When we were done around the house, we settled on the couch for a much needed bottle and watched the Royal wedding of Prince William and Catherine Middleton. Seth fell asleep before he could see how cute the little page boys were and how adorable their outfits were. Either that or he was faking it in hopes I wouldn't dress him in embarrassing outfits anytime soon.
Seth had a nice bath this evening. He was cooing and smiling and alert while I washed him. I asked Brian to get him undressed and swaddled while I got the kitchen sink lined with rolled towels, making a comfy little makeshift tub that fit him perfectly. Once in the water, he relaxed and looked up at me like "thank you" while I washed him bit by bit. Much to my surprise, I went to wash his boy bits, I unwrapped that section of the blanket only to find him wearing a diaper. I couldn't help but laugh and point out to Brian that it usually works a little better if babies are naked for bath time. lol
So now I sit, watching the new Harry Potter with my little pal all bundled up, warm and clean in my arms. He smells of citrus shampoo, body wash, and cradle cap oil. It's so much better than smelling sanitized baby! We love him so much - he's such a little cutie!!
Couldn't stay away...
I've come to accept that I just can't stay seem to away from posting updates and pictures on here. Sometimes a week passes so slowly that it feels like I've been neglecting the site. So I'm going to be blogging when we have any pertinent news or pictures and then doing a weekly summary in case nothing much has been going on. This week has been another busy one for us. Seth had an appointment on Tuesday back in the NICU at the Spanish hospital. They did blood work and an echo on his head before deciding he needed a transfusion for his anemia. We were told at 1 o'clock to come back at 3:00 for the transfusion so we went to get a bite to eat and returned promptly at 3:00 ready to get the show on a roll. Yeah.... we must have forgotten where we were for a minute because it wasn't until nearly 7:00 that the blood even arrived. They placed Seth in an incubator so he wouldn't get cold and strapped him into the dreaded huge diaper so they could secure his hands. They shaved a small patch of hair from his forehead/hairline and inserted an IV. He looked so huge in the incubator compared to the other babies in the room which was the complete opposite from him being one of the smallest in that very room two weeks ago. He laid there in his huge diaper, with two tiny "sticks' poking out of it donning a pair of babylegs (leg warmers) and booties. He's so stinking cute! Two hours later, we were all on our way home.
We saw his pediatrician, Dr Epperly, on Wednesday who weighed him and took his new measurements. Seth is now 4pounds 12.19ounces, has a head circumference of 12.6inches and is 17.42inches long. He checked out Seth on the firetruck bed and said he looked great. Afterward, we headed back to the NICU for a repeat echo where they told us that Seth's brain bleed had resolved itself. Then he told us that he wanted us to come back in two weeks and get an MRI in the meantime because (and he pointed at the screen) he thinks Seth is developing a cyst in the right region of his brain. That news was a surefire way to erase the huge grins we had been donning when learning about the brain bleed being gone. No other explanation was given about the cyst and we drove home in silence....
Week 2 (April 19th, 2011 to April 25th, 2011)
So I’ve made the decision that from here on out I’m going to do weekly updates unless something big is going on like birthday’s, holidays, etc. It’s just so hard to find the time to blog and upload pics every day. I have put together Seth’s NICU book and it’s in the process of being published. I’e only ordered 1 so far to make sure I like the final product and when I get it exactly how I envisioned it, family and friends will be more than welcome to a copy. Each year, a new edition will be released with that years pictures and happenings in hopes to retain the wonderful memories we are making. So I apologize if I’ve worried anyone this last week because of not updating, I assure you that we are all happy and our little man’s health is progressing every day.
The visiting nurse, Stacey, came to visit us twice this week. On Monday, she came and brought us 7 big cans of the Neosure formula that we are currently fortifying Seth’s milk with. She talked to us a little about how to do little things like deal with baby fingernails (since Seth likes to grab his face often) and bathing and feeding. She also brought a neat little backpack filled with bottles, nipples, information and such. Brian just likes the bag itself because he thinks the diaper bag is too girly. (I was given the bag I registered for and it has a blue and brown paisley print.I guess that just means I’ll have to buy another bag that I like that’s more “man-baggish”. lol
Stacy weighed him on Monday and he was 4 pounds, 4 ounces. Much better than the 4 pounds even he had been at the doctor’s office the week before. She came back to visit on Friday, weighed Seth and he was up to 4 pounds, 5.18 ounces **and yes - I’m counting the .18 ounces, we’ll take all the help we can get**. She also brought us an entire bag of probably over 200 pre-sterilized nipples so I don’t have to worry about washing and sterilizing as I go and can just grab a new one as I need it.
Seth was also visited by the development specialist, Christina. We worked with positioning his crib so he would sleep in it. We added a wedge to give his mattress and incline and added a few positioners that make him feel snug as a bug. They worked like a charm and before she had even left, he was napping in his own room. Unfortunately, it’s been extremely cold in our house and here in Spain, the heaters don’t work very well, so we’ve had to resort to co-sleeping to keep him warm enough. It should be heating up though and he’ll be sleeping in his room at night before we know it. Christina was very pleased with Seth’s progress so far and will be visiting him weekly to work with him. Next week, she’s bringing in a language and speech therapist to observe Seth’s suck/swallow.
The pediatrician on base, Mrs. Epperly, saw Seth on Wednesday. She ran a full metabolic screening on Seth and the two nurses who did the heel stick were impressed that Seth barely made a sound during the process. Apparently they didn’t see his war wounds and don’t get the fact that a heel stick is nothing but child’s play to our little fighter.
Seth went to his first Easter egg hunt on base on Thursday where he found a nice quiet corner to himself and found a yellow Easter egg. Then it was time to meet the Easter Bunny so he dressed in his finest Easter outfit (thanks Nana) and we got some good pictures of the two of them together. Speaking of good pictures, Seth had his first professional photo shoot on Monday by Heather http://heatherbeattyphotography.com/ for any of you looking for the best photographer ** she travels**. She was so patient working with us, and even made the house blissfully warm for Seth as he spent a great deal of the day naked. We literally spent the day with her from 10am to just about 5pm stopping to let Seth adjust to each pose. Her work speaks for itself and we can’t wait until we get to see the finished product.
Week 1 (April 12th, 2011 - April 18th, 2011)
Tyson and Lucy were introduced to Seth one at a time. Lucy was infatuated with the new baby we brought home for her. A human baby all for her. She is very gentle and nuzzles her head next to Seth of on his body. He seems to be soothed by her touch and warmth and Lucy couldn't be happier. I think she slept as much as I did, waking for each diaper change and feeding, or simply to come let me know that her baby had made a squeaky noise. Tyson, well... Tyson didn't care much about Seth until he started crying a few hours later. Then, he went insane and all of a sudden we had a meat-head with baby on the brain. He was OBSESSED! We'll just have to keep an eye out on him around Seth since he's such a clumsy oaf.
*Note to self* When your mother tells you that you're life will be turned upside down when you have your first child, you might want to listen to her. Since having Seth, our days turned from quiet, organized routines to a quiet whirlwind of chaotic equations of how to do even the simplest of tasks. Is it ok to leave the baby in his seat or bassinet to run to the bathroom or should I just take him with he? Do I change him and then warm a bottle? or do I warm the bottle and then change him? or I warm the bottle while I change him? what if the bottle's too warm? too cold? and of course figuring out how to do things with one hand like eat, type, etc. I've now come to the revelation that before you can have a child, you should have to go through boot camp and accomplish the following 2 courses **all with one hand tied behind your back and one closed (because it's a bitch when you get sanitizer in your eye)**; 1. an artillery type class where instead of a gun, you have to disassemble a bottle, properly clean & sanitize it, reassemble it, warm it all while balancing a sack of flour and listening to an audio tape of a screaming baby ostrich. 2. rotating and folding a load of laundry, cutting meat and consuming it in 30 seconds, and putting toothpaste on a tooth brush. Speaking of tooth brushes, I went to brush my teeth yesterday and when I got down to the bathroom, instead of the toothbrush being on the charger, I found two McDonalds cheeseburgers in its place. Sadly, instead of wondering about where the tooth brush was, I found myself excited that the cheeseburger fairy had come for a visit!! YIPPEE for me!!! - and no, before you ask - although tempting, I didn't eat them. It wasn't until later in the evening that I realized I was so frazzled about the entire ordeal, I had entirely forgotten to brush my teeth. lol
Today Seth had his first medical appointment at the hospital on base with his pediatrician, Commander Michael Epperly. He was weighed (4 pounds even) and measured (17.7 inches), and had his surgical sites looked at. Dr. Epperly said every thing looked good. Seth looked so tiny and cute on the little pediatrics firetruck bed/table. This visit was mostly a visit for paperwork and getting Seth into the health care system on base. We were able to figure out prescriptions (which has been an issue for us since leaving the hospital) and will hopefully be able to get our hands on everything by the end of the week. He has appointments scheduled weekly now with Mr. Dr. Epperly or Mrs. Dr. Epperly (what are the chances of that, right?). While at the hospital, we wen for a visit up to Labor & Delivery. They gladly took his handprints and footprints for us so we could have them in our baby book. They also took our picture for the "2011 babies born" board. It was our first picture of us three together.
The second night at home went a little bit smoother than the first. Although I'm beginning to understand the meaning of sleep deprivation, we are beginning to get a routine together for feedings, cuddle & play time and time spent settled alone, focusing on mobiles and bumper designs. Tyson is warming up to him a little more and licked Seth's hand this evening in what seemed like a peace offering/handshake type of deal. :)
This morning we met with Auntie Sonia for coffee because if I hadn't gotten out of the house, I may have gone completely insane. So we took a trip down the street and the sunlight did me good because I felt completely refreshed afterward. When we got home, Lucy came over to the car seat to make sure that "her baby" came back in one piece. Once she was thoroughly satisfied that I had taken care of her new prized possession, she ran of to find her soccer ball (just in case Seth wanted to play later). Tyson was next to come over to the car seat and make sure Seth was back ok. He nuzzled his foot and his eyes almost popped out of his head when Seth's *much too big* sock came flying off. It was like the Willie Wonka's dog treat factory opened and gave him an everlasting dog-stopper. He gently licked the sole of Seth's food and my oh my - did Seth let him have it. Tyson just stopped and looked at Seth and grumbled before walking away. I guess Seth hurt the old guy's feeling. lol
Today Brian received an early birthday present from his mom. It's the exact baby carrier that he wanted as well as a little kangaroo pouch that Seth fits in perfectly. Brian tired it on and out a whiney Seth into it. Instantly, Seth was snoozing away. Which of course, led to a father-son nap on the couch with Lucy keeping guard nearby. Lucy must have needed a good sleep from being up all night with her baby again because I was able to walk into the room, take pictures of everyone, and then make my way out without even the slightest bat of an eye. :)
I put Seth in his first cloth diaper today and he thought it was the best thing since being extubated. It must have been like sitting in a cloud. He had such good naps all day, which came back to bite me in the ass at night, but he was so comfortable. I only have a few that fit him properly but I'm going to have some more made for him now that I know how much he seems to enjoy wearing them.
We took our first family walk in the stroller today. It took Brian and I a minute to figure out what position we liked best for Seth to be in and we ended up opting for the bassinet setting facing towards us. We headed across the street to Puerto Sherry where Brian and I ended up having lunch. So I guess you could technically say Seth went to the beach for the first time today :) He enjoyed the stroll and was asleep within seconds of being snuggled into his stroller.
Aunt Sam came back into town today and was able to see Seth for the first time since a few days after he was born and fresh in the NICU. Her relatives are in town right now and her mom cooked a DELICIOUS Italian feast of lasagna, meatballs (ooohhh meatballs, how I love thee...), and a salad that only a mother could make. I thought I was going to explode! Seth slept nearly the entire time we were at Sam's house, making it a much needed grown-up meal where I could take my time and enjoy as opposed to the one-handed hoover meal.
Tyson has certainly taken a liking to Seth these days and has appointed himself as his official guardian. I'm amazed everyday to watch each dog around the baby. They're both so gentle and genuinely worried about him when he cries. Seth now has a favorite spot on the couch that he like to fall asleep and that's next to Tyson. I think the movement of Tyson breathing and his warmth comforts him. So now, when Seth is fussy, Tyson comes sluggishly over to me and looks at me like "if you let me up on the couch, I'll totally take care of that for you :)
Brian put together the swing for Seth today. I love how the seat/papasan chair reclines so he's never scrunched up. But the swing seems to go fast, even on the lowest setting and I don't think Seth diggs it too much. I cut Seth's nails for the first time today while he was sleeping. I was so nervous but realized halfway through it wasn't that big of a deal.
Today Seth got his first bath and let me tell you, he was less than amused with the entire process. I filled his tub with water while Brian undressed him and brought him in to me. Brian set Seth down in the sling/seat portion of the bath (kudos to the inventor of this bath - two thumbs up) and we got to washing. Seth seemed to like some parts of the process like the warm water being poured over his chest but would immediately begin crying again after his slight pause *although it could have been all in my head and just the look of relief as he peed in the water*. I scrubbed his little head and rinsed the soap from his head and body. I then handed him to Brian who was ready and waiting with a towel and apologizes for "what mommy had done to him". It was only then that I realized I had forgotten to bring up a diaper with his new clothes so down three flights of stairs I flew, into Seth Land, where I felt I was retrieving a golden ticket of some sort.
When I arrived back upstairs, Brian set Seth down on the bed only to find when he removed the towel that Seth had left a messy surprise inside. So we cleaned him up and after getting a mini massage with lotion, was dressed and swaddled up, and had a nice meal before nodding off to sleep.
This morning, I went out and bought a kitchen scale so I could keep track of Seth's weight. He was 1900 grams (4 pounds 3 oz), which was a little better than the 4 pounds he was at the doctors on Tuesday). But only having a 3oz weight gain in a week isn't ideal by any means so I began adding calories to Seth's bottles to help
Seth's been hanging out at home today, sleeping while I was able to clean the house and get it back in order. I started fortifying his milk last night and he seems to like it. I've been worried because he has lost weight since discharge so he's being exclusively bottle fed now so I can keep track of how much he's eating and his calorie intake. He doesn't sleep at night and hates his nursery, but hopefully with our development specialist, we can get him positioned so he'll be more comfortable in his crib. His hair seems to be lightening up more these day and now has visible red undertones. His skin is looking more like baby skin with the help of meds (which he absolutely HATES). Tomorrow he has an appointment with the visiting nurse and hopefully he'll have gained a little bit of weight. Oh - the remainder of his umbilical cord fell off today and in true preemie fashion, has a slightly herniated belly button :)
NICU Day 52 / HOME Day 1
Today marks the end of our NICU stay. It seems like this last week has flown by, yet at the same time, this last weekend in itself dragged on like a child waiting to go to Disneyland in the morning. Seth has reached milestones so quickly and has had such a turn-a-round, that his doctor decided that he was able to be released from the hospital. As you know, last night, we spent our first full night caring for Seth in a room on the 7th floor. He was a little more feisty than I had thought but we had a good night together. He even spent a little bit of cuddle time with Dad on the bed.
In the morning, the nurse came in and took Seth back downstairs where they did a blood draw and he had his third eye exam. The eye doctor said everything looked great and we'll have another visit with him in about a month. After Seth had his blood draw, we went upstairs to have his hearing checked, which was an ordeal in itself, but once done, we were told that the results of the test were great :)
After his hearing test, we headed back to room 710 and waited until about 3 o'clock, when Isabel came upstairs to talk to us. She said some of Seth's blood tests came back and although he was a little anemic, she didn't think a transfusion was needed at this time. She set an appointment up for us in 2 weeks to have another blood draw and to possibly receive a transfusion.
Then she gave us the fantastic news. SETH COULD GO HOME!!!! We were so excited :) We headed back down to the NICU so Seth could have an echo done on his head to check his cranial bleed. It still looked like it was resolving itself. When we come back in two weeks, he'll also get another scan. We took pics with nurses and doctors and we were off. It was a little strange to be holding our little guy as we walked out of the hospital doors. Overwhelmed with delight, relief and a twinge of fear, we packed our new family of three into the car for the first time and headed home.
Tyson and Lucy were introduced to Seth one at a time. Lucy was infatuated with the new baby we brought home for her. A human baby all for her. She is very gentle and nuzzles her head next to Seth of on his body. He seems to be soothed by her touch and warmth and Lucy couldn't be happier. I think she slept as much as I did, waking for each diaper change and feeding, or simply to come let me know that her baby had made a squeaky noise. Tyson, well... Tyson didn't care much about Seth until he started crying a few hours later. Then, he went insane and all of a sudden we had a meat-head with baby on the brain. He was OBSESSED! We'll just have to keep an eye out on him around Seth since he's such a clumsy oaf.
I'm writing this message from Seth's BIG BOY room. We're on the 7th floor in the Cadiz hospital (room 710) where Brian, Seth & I will be spending the night before Seth is released from the hospital TOMORROW!! I can't believe this day has finally come where we will finally get to walk out of this hospital as a family of three. This floor of the hospital is a pediatrics ward so although we have a few scared and crying children, we also hear laughter, giggles, cartoons, and grown up voices (who know to whisper when they come into your room) instead of the monitors, alarms, phones, and screaming nurses. The walls are decorated in kid themed pictures and even the colors of the chairs are bright orange and bright green. It's so much better to be up here! The nurse (one of my favorites) who transported Seth upstairs, got teary eyed when she tucked Seth into his new bed and whispered her goodbyes into his ear. Then she gave me a hug and kissed my cheeks before heading back downstairs. A new nurse came in and gave Seth the once over. He is now 4 pounds, 4.78 ounces, is 17.75 inches long, and has a head circumference of 11.8 inches.
We thought we'd be sharing a room with Lorena, who used to be Seth's neighbor in the NICU for the first month after he was born. She had gone home but recently has had problems with her breathing so they're observing her overnight. Anyway, when we reached the 7th floor the nurses told us that they had an extra room so we each got our own. YIPPEE!! We love bright-eyed Lorena but the squealing that comes from the parents' "ES SU MADRE!!" just might put me over the edge. So here we sit and sleep, waiting for tomorrow to come. I feel like screaming Annie's "Tomorrow, Tomorrow, I LOVE YA TOMORROW" up and down the halls, but the only place that would get me is a first class ticket to the looney bin. But then again, who knows... the kiddo's might eat that shit up.
In true fashion, Seth's new bed is decorated with his hospital bands, blood type and the Jesus picture Lorena's parents gave us when he had his first surgery. He's quite comfy cozy and the nurses are all amazed with how small he is. I feel like saying "small? Seth? he's HUGE!!" lol. He'll be getting fortified milk once a day from a bottle and breastfeed as much as he wants other than that. Once he get's his eyes checking and his blood drawn tomorrow he'll be cleared to go home :)
** and for those of you wondering... yes, the hospital is providing me meals during our stay... DELISH!!! (insert melodramatic gag here)**
Today was much like yesterday. Lots of baby cuddles, lots of eating and diaper changes. I hate the jammies the hospital has the babies wear. They have buttons in two different places in the back so you have to lay them on their tummy to undo them and to do a diaper change. Seth HATES it and he lets you know. I'm not sure if he's just not used to it or if it hurts his incision site, but he ha a big boy cry now and he's not afraid to use it!
We're hoping to find out tomorrow when he'll be able to come home. We have now officially installed the car seat and have his coming home outfit and diaper bag ready :)
Today makes 7 weeks and has been a good visit with Seth. They dressed in him little jammies that are just about the perfect size for him (a huge improvement from the one he had on yesterday that he was practically swimming in). He's a sleeper though, and even though he's quite the eater, it seems like sometimes he'd rather be snoozing away than worry about food. I'm sure that will be much easier when we get him home and I can feed him when he's hungry instead of a strict 3 hours in between feedings.
Brian and I have a schedule down for how the day goes... Here's how we handle it these days:
08:00 - Brian goes to work
11:00/11:15 - Brian comes to pick me up and we head to the hospital
12:00 - Arrive at the hospital and get the daily update
12:15 - I feed Seth and then Brian supplements the rest (if any) with a bottle and is on burping duty while I'm in the other room
13:30 - Brian and I go eat lunch and grab a cup of coffee, then back to cuddle with the boy
15:00 - Shift change in the NICU
15:15 - Repeat feeding routine
16:30 - Head down to the cafe next to the hospital and get something to drink while Seth takes his after meal "full belly" nap. Then back up to cuddle with the little man
18:15 - Repeat feeding routine
19:00 - Say our goodbyes to Seth and head home
We can't believe how full the NICU is right now. We have 10 babies with us in minimal care which itself is no bigger than a decent sized bedroom. The intensive care room is so packed that the babies are spilling over into the intermediate care room which is full as well. It's nothing but alarms and monitors and parents and nurses 24/7. We'll be glad when we are finally able to get him home with us :)
Today has been a quiet and stable day for us which we always welcome with open arms. Seth is still able to be off the O2 and they are so confident that he doesn't need it that they have even moved the equipment away from his station.
This morning he had an ultrasound of his abdomen done outside of the NICU, down the hall. He was transported in one of the open beds (you know, those little rolling plastic tubs) and when they brought him back, the doctor decided not to place him back inside the incubator. Instead, he is now in the BIG BOY bed where they will make sure he can maintain his body temperature.
Today, we were pleased to find Seth with his nasal cannula off and doing fantastic without the aid of oxygen. It was the first time we've ever seen him completely tube free. He seemed so much more comfortable and right after I fed him, the nurse came and took out his PICC line. He fell into a deep two and a half hour nap after that. I think that with only the saturation monitor on, he had nothing pulling or pinching him; nothing up his nose or down his throat; and the relaxing room with the shades down that made him so calm. When he woke up, he was hungry. So I fed him again and after about 20 minutes of play time, he drifted off into another nap and Brian and I got to grab something to eat. When we returned, the nurses said that while we were gone, he had awoken at that 2 and a half hour time again hungry and mad that I wasn't there to feed him (apparently the hospital makes them follow strict 3 hour timelines as to when the milk can be released from the dietician room and given to him).
I fed him and all the fussing beforehand must have worn him out and he fell fast asleep again. That was where we left him when we headed home.
The doctor says he's doing great and that she's running some more tests because of his jaundice. She said his labs have been looking great and she has been able to cease the antibiotics :)
Oh where to start for today's news :) Luckily today is all good news and we took a giant leap forward. I'm sure along the way we'll have some steps backwards but for now, we only have fantastic news to share.
When we arrived to visit Seth today, I started to walk into the room and all the nurses smiled to me pointing towards the hallway and shouting (excitedly) that he was in another room. I can only imagine we had ear to ear grins on our faces as we headed into the intermediate care room. My smile disappeared when I realized I couldn't figure out which kid was mine. I kept going from isolette to isolette worried that I wasn't able to recognize what he looked like. Was I going insane? Then I saw a couple open cribs with babies in them. I searched their name plates to see if one was him. The nurse nearby asked who I was looking for. Was SHE going insane? Who did she THINK I was looking for... we'd only seen each other for the last month and a half! "Seth", I told her. She looked at me, smiled, and said he was in the other room. *huge sigh of relief. And here I had thought I was the worst mother ever and couldn't even recognize my own son* Sure enough, we found Seth in the MINIMAL CARE room. The only things attached to his body were a breathing monitor, O2 sensor, his PICC line that is currently running fluids and glucose because of his hypoglycemia, and his nasal cannula.
The doctor came in and she told us that she upped his feedings again to 30cc's because he seems to be hungry all the time and she has taken him completely off the TPN (Total Parenteral Nutrition). She's going to be running another blood test and if it's as good as it has been, then she'll be taking him off the antibiotics and the PICC line will be removed. She's also still working with him so she can take the O2 off. He was doing great today with his saturation levels and only dropping down if we removed the cannula and either 1. was fed, or 2. was fussy.
Speaking of food - Today was the first try to get Seth latched in so he could breast feed. He accomplished this feat on the first try and although we thought we were going to need to supplement quite a bit with the bottle, he only took an extra 5cc's and then took his "full belly" nap. For the next feeding, he latched on the other side with a little help (but that's just because he was being feisty) and wouldn't take anything from the bottle afterward. Tomorrow, we're going to weigh him and then I'll feed him. We'll weigh him again afterwards to see how much he's eating.
The HUGE news though is that the doctor says that she sees no reason (unless something happens over the weekend) that Seth should be able to come home NEXT WEEK!!! We must have been giving her the look of shock and amazement and we asked her again and again "NEXT WEEK?!?". Poor thing probably said the same news, four different ways because we wanted to be sure we heard her right. She explained some of the after care testing that we'd need to return for and said that she'd like to take the O2 off him soon. But with or without oxygen, he should be coming home next week. If this happens, I think I'll have received the BEST birthday present I could ever ask for (unless that dream about winning the lottery, hiring a young Brad Pitt as my cabana boy, and having my 18 year old body back was included).
The rules in this new room are foreign to us. We've been so used to asking for permission to hold Seth and the nurse getting him out, to having free access to him. He needed his diaper changed and she told me I could do it. Funny enough, Brian's the one who had to show me how to do it. lol. The diapers aren't weighed like they are in the other room and you can just throw them in the trash when they're soiled. We can position Seth how ever we want, have the lighting however we want, and I can even sing to him. You know why I can sing to him? Because we're finally in a room where it's almost silent!! With the exception of on baby who cries a little more than the others and the occasional alarm, we catch ourselves starting to talk loud and then realize there aren't chimes, and people, and phones to talk over. It's WONDERFUL!!!
Today was a pleasant day for us in the NICU. It's a busy place at the moment with several little ones needing constant attention. It felt weird being in the corner, holding Seth, knowing we're having a good good day while the baby next to us was a shade of purple no parent ever wants to see (regardless if it's your child or any other). Watching a swarm of nurses and doctors rush over and frantically take control reminded me of the delicacy of each passing minute for every baby in there.
Today, Seth was having a little tummy time when we first walked in. The doctor and one of our favorite nurses told us that he has been really hungry so she upped his feeding's to 20 cc's. It was strange to see so much milk in the bottle when the nurse brought it over. I got my first turn today to feed Seth from the bottle. He's such a happy and content boy after he eats. He still seemed hungry after he ate the 20 cc's so I won't be surprised if he is given more in the next day or two. Brian helped me burp him and then Seth fell asleep in his daddy's arms while I tried to go magically make Seth more "juice" (which is so frustrating these days quantity wise, but that's another story).
The doctor also told us today that she's hoping to stop the antibiotics by Thursday if his blood tests are still like they are right now. If she does that, she''ll be able to remove his IV soon and then once we get him weaned off the oxygen, we'll be able to hold him a little easier without cords and tubes and IV's getting in the way. Then, she gave us the best news yet. If Seth keeps this up, he's the next one on the list to be moved to the Level 2 nursery and one giant leap towards coming him will be made!!!
Brian even helped the nurse with a poopie diaper today. He says it's only because his poo doesn't think yet but once it does, it's all up to me. Yeah - let's see how well that works out for him. lol
Today, Brian got to feed Seth a bottle for the first time. I wasn't there so sorry, no pics but hopefully we'll get to do it again tomorrow. There is one nurse (the one that was in our section today) that lets us do certain things ourselves like help feed him and readjust his stickies, etc. Brian was even able to give Seth his first dose of caffeine to help regulate his breathing. Again, I wasn't there for that either. My world seems to revolve around pumping in the other room when feedings are going on. I'm hoping I can manage my time better and get to give him a bottle myself one of these days.
We got back from lunch today just in time for Seth to show us what a mess he can make of a diaper. Just so you can get a visual - I opened his diaper to check, and Brian was looking over my shoulder trying to analyze the exact color like a scientist. We both got to hold him and he seemed more alert than usual, taking nice long naps in between little energy spurts where he would look up and stare when we talked to him. Maybe it's just the lighting or that he was up close and alert, but his eyes seem to be getting bluer every day.
His infection seems to be getting better and his platelet count is increasing. It's a full house in every level nursery right now. It seems like there's at least one new little one coming in every each day. Although I love being in the corner and having a little bit of privacy, I'm still looking forward to being able to be in the Level 2 nursery where things seem so much more quiet and less chaotic.
Today we zagged instead of zigged and went for our first outing during most of time we set aside each day to be at the hospital. I'd been dreading it for days knowing that D-day was creeping closer when the MotoGP race was to be held here in Jerez. I was so nervous to be so far away (from the hospital it's about a 45 minute drive without traffic) and terrified of being lost in a sea of people and not being able to get out of there easily if something were to happen and we needed to get back to the hospital quickly. It also didn't help that I shot up out of a deep sleep at 4am feeling that something terrible had happened to Seth. Not being able to call and find out from the nurses if my son was ok or not had me feeling a mix of frustration, anger, sadness and vulnerable. I laid there until 6am until I finally fell back asleep and the alarm sounded at 6:15. That's how my day began and between getting stuck in a swarm of Spaniards for hours, sitting behind a cigar smoker who practically lit his next one from the last, and the cold rain that appeared today out of nowhere; I can honestly say that if I hadn't already had Seth and had this kind of day being nearly 9 months pregnant, someone might have had to bail me out of jail for losing my mind on the umbrella people sitting next to me consistently poking me in the head. Don't get me wrong, we had some fun as well, but we kept trying to picture me trying to waddle around and get through the crowd with a huge belly attached.
The race ended around 3:30 in the afternoon and we figured we'd wait for an hour, let the crowd subside and make our way to the hospital around 5pm. Then, spend a couple hours with the little man and call it a day. Well, it took us a little over 2 hours to get to Cadiz. Seth was just finishing up a bottle when we arrived and looked over at me like "I smell 2 stroke... hmmm... where have you two been?"
We talked to him for a little bit and took our daily pictures. I didn't get to talk to a doctor today but his chart looked good and besides the lack of poo, seemed to be the same as yesterday. The room is boiling hot and remains to be filled to capacity. Actually, almost every level room in the NICU is pretty full. The little guy that had been Seth's neighbor is now in the next level down. And that's how it happens folks. One day they come in and then poof - next thing you know you're having to stare at yet another baby expect your own being one step closer to going home. I know our day will come soon enough but I can't help but look into the next room with a twinge of jealousy as I watch parents handle their babies without having to get permission first.
Our little man is 6 weeks old today :)
Guess what everybody? Somebody poo'd yesterday - - - TWICE!!!! I never in a million years thought we'd be so proud of our kid for pooing. They're running more blood work to check everything but he's still as stable as yesterday. That means we can sneak off to see the MotoGP race tomorrow. I'm so nervous to be so far away from him, stuck in a constant sea of people but I'm sure he'll be just fine. He's with the best and most expensive babysitters in Spain, right?
It sure seems like a change of season here in Spain. The sun is shining and the birds are chirping. Hopefully this will mean a change of luck with Seth's help and it'll be a smooth ride from here on out. All the nurses are amazed how big he's getting. Another new guy just checked into the NICU hotel/spa. He's about twice the size of Seth. lol
Today we got the results from Seth's lumbar puncture to look for an infection in his spinal fluid. Drumroll please............ IT'S NEGATIVE.
The one place this lingering infection hasn't gone is to his brain and that was a big relief for us. His latest cranial scan came back the same as last time. I was afraid the bleed would be larger because of the strain on his body from this infection, so we'll take whatever stability level we can get. They're running another blood test now to see if he needs platelets or if his count is up enough to be ok. He's been feeding out of a bottle today and the plan is to continue with it. Seth seems to get lazy and falls asleep before he finishes his amount and they have to give him the remainder in his og-tube. The doctor is planning on increasing his feeds to a whole 7cc's. That's a lot for a guy who was only getting 2cc's before he got sick again. He still needs oxygen support from the nasal cannula, but only a minimal amount, so they've been trying to wean him off of it. So far, he still seems dependent on it but we're hoping to see him soon with yet another tube removed here shortly.
We got a new little guy in the NICU today. A tiny fellow - around the size of Seth when he was born. For now, it seems this place is overrun with boys. I think there's only two girls out of the eleven babies in here.
My husband has quite the milk aversion... even the word 'milk' can make him gag. So when I heard him call out my voice over my headphones and his head popped through the curtain of the NICU pumping room, my heart skipped a beat and I stopped breathing. "She's feeding him WITH A BOTTLE" he yells and runs off. *Only now, looking back, do I realize what this scene must look like from the other side of the curtain. A man, speaking a different language has his head poked through the curtained dividers of the pump room with a camera in his hand* So here I am, boobies out, frantically trying to disconnect from what Brian calls the "booby juice" machine (note the word milk is avoided by my uber-mature husband). I was also simultaneously attempting to wrangle my newly enlarged assets back into my bra, get my shirt back on, hide my iPod and shove all my stuff into one corner of the room so I didn't miss it. I got there just in time to watch Seth drink what was left in his bottle and to get burped. He had the most glorious look of accomplishment as he drifted off back into a sweet slumber.
Although he still has an infection, it looks like current antibiotic treatments are beginning to work. His platelet count was going up today so transfusions of platelets weren't necessary although he did need a transfusion of whole blood (transfusion #20) later in the evening for his anemia. Still nothing had come back positive for the culture of spinal culture so that's good as well. He was weighed again today. He's a whopping 1.9 kilo (that's 1900 in grams and 4.18 in pounds). Brian want's to be make sure that everyone knows that he won the 'guess Seth's weight' game we had going. He guessed 4.25 pounds and I guessed 3.5 *in my defense, this was about 2-2.5 weeks ago - so I think I'm right* but regardless, he's gloating and getting to walk around with his chest puffed out telling anyone who will listen that I was wrong and he was right. Unfortunately for him, unless he says it with a treat in his hand, the dogs just don't really care. lol
We'll be calling in the developmental specialist next week so she can speak to the nurses about positioning again as well as trying to get them to understand we don't want the huge diapers on Seth. Some of the nurses are so set in their ways, they seem to think all the diapers we have for him are too small. Granted, he did get weighed today and the cuddle buns diapers are a little small, but the preemie sized pampers will fit him for quite a while. So we'll be bringing up our concerns with his doctor tomorrow.
Not much to say about today's visit to see Seth. His infection is worse and platelet count is down so he's receiving alternating transfusions of whole blood and platelets. They upped his antibiotics and took another blood sample for yet another culture. If he shows no signs of improvement by tomorrow, they'll do an echocardiogram to check his heart. Still no update from the culture of his spinal fluid.
He was fussy today and, like always, could only be settled down by his daddy. But our good news for today was that they were able to resume his feedings (hopefully this time for good). A whole 4cc's this time :)
His neighbor had an oxygen hood on today and didn't look like she was having fun at all. It looked like a deep sea dive gone terribly wrong. His room in the NICU is crowded and busy these days with people coming and going, alarms ringing, and babies crying. It drives us insane at times but Seth doesn't seem to mind it much.
Today was one of our favorite kinda days *add sarcasm here*... an in-limbo kinda day. We couldn't hold Seth because of a high bleed risk but after his transfusion (number 15) he seemed animated and focused in on us as we spoke to him. He LOVED his new purple binkie. When he'd spit it out he was able to move it back into his mouth with his hand.
He was mad when they splinted and secured his foot to immobilize it for his IV. After that, he looked at the nurses like "I thought you were my friend". His infection has gotten worse again and they've increased his antibiotics again. His platelet count was very low again and that's why the transfusion was necessary. Still waiting on the cultures from the lumbar puncture and also from the blood sample from this morning.
Being a NICU parent is a constant struggle of trying to keep yourself together even when it feels like the world around you is falling apart...
Today was Seth's first lumbar puncture. They're checking for an infection in his spinal fluid and then possibly doing an MRI to find out if his central nervous system was damaged. He's been running a temperature off and on and still has periodic breathing that leaves us holding our breath until the numbers on his monitor return to normal. They also changed his PICC line today in case it has been the source of the ongoing infection.
On the upside of things, Seth's fungal infection seems to be cleared up and they have been able to stop treatment for that. They gave him a bath this morning, so when we walked in, we found his head looking like a furry tennis ball - you know, the kind you find under the couch of an old lady that has fifteen cats who have all taken turns sharpening their nails on the poor thing...
Today is going good but time seems to be slowly creeping by. I almost feel cheated out of an hour because I slept in today and daylight savings time started, making me have to put my clock one hour ahead. We're not allowed to hold him today until his blood transfusion is over (his blood tests showed he was anemic so he needs some red blood cells). It's already 5 o'clock and only halfway through. The feed is slower than usual because the IV he has is just above his forehead so I'm not sure if we'll be able to get him into our arms until tomorrow.
His blood pressure remains stable without medication but has periodic breathing, causing the alarm to go off eery once in a while. I think it's because he gets mad that he can't move his arms so he holds his breath and squirms around. They had to secure his arms because he's not very fond of the iV in his head and tried to pull it out the minute they put it in. He's also fussy because they placed a orogastric tube when they extubated him this morning and replaced his archnemisis with a pleasant nasal cannula. That's right folks, he's no longer intubated :) His abdomen is still a little distended but the x-rays show it's only gas that is able to flow through the entire bowel. So once the pressure is relieved, he can begin feedings again.
Compared to some of the other preemies in the room, Seth actually looks like one of the bigger guys in the group. None are as small as he was at birth, but even comparing them with him now, Seth looks so different to us. It feels a little reassuring when the nurses came to take away some of the equipment from his station because he didn't need it anymore and the other babies did.
Since I'm bored and can't hold him yet, I'll tell you about what surrounds him in his little world. His corner of the NICU now only has:
*1 Giraffe incubator which displays*
- air temperature inside the incubator)
- Seth's temperature
- humidity of the air inside the incubator
*1 monitor displaying:
- heart rate which is shown in beats per minute
- blood pressure
- oxygen saturation level
- respiratory rate shown in breaths per minute
*1 little oxygen machine supplying his nasal cannula
*1 infusion pump slowly feeding his nutrition through his PICC line.
That's it for right now... he has another infusion pump for when he needs one of his antibiotics but it's not in use at the moment.
Seth was a little better today. His color has improved and blood pressure remains stable with good urine output. He hasn't needed any transfusions with this infection as his platelet count was good and the Disseminated Intravascular Coagulation (DIC) - that's when your blood loses the ability to clot - wasn't rearing it's ugly head this time. The tachycardia (heart beating too fast) is under control as well. The doctor is hoping to extubate him tomorrow and resume feedings. He hates the vent tube and pulled it out once today (I imagine him giving the nurse the bird with the other hand while he did it).
When we were leaving, I said goodbye to Seth and told him I would see him tomorrow. His eyes opened as if to see "ok mom - see ya later, I'll be right here". Our favorite nurse saw him looking up at me and slide his bed out so I could give him a kiss goodbye. It's the first gesture of pure, sincere kindness I've been shown by a nurse in the NICU :)
I knew the minute we walked into the NICU this morning that it was going to be a rough day. I think my exact words were "I don't want to go in there" and Brian asked me why. We continued walking towards Seth's isolette and I pointed to the dreaded machine next to his bed. Again, Brian says "what?". 'The vent', I snap... I must have said it a little loud because heads turned in our direction, then the eyes turned to looks of pity and then they turn away before making eye contact with us.
I lifted up the cover on his isolette to see our little guy laying there, the all too familiar perma-smirk from the vent tube coming out one side of his mouth. He looked pale and didn't respond to our voices when we talked to him. One of the doctors, Victoria, came over and told us that he had another infection. This time, it was a different microbe causing it. The tachycardia was back in full swing as well. They upped his dosage of antibiotics and started him on the dopamine again and said the three words I've come to hate "wait and see".
Simone, came and did an echo on Seth's head to check the status of his cranial bleed. He said that it looks similar to last week and that was good because last week it looked like the bleed was beginning to resolve it self.
It was blistering hot in the room today and it was louder than I've ever heard it in there before. Seth has quite a lot of new neighbors moving in. It'll be interesting to see how many leave before him. He's already the one that's been in the room the longest out of the 10 beds that are currently occupied. Everyone else has that was there when he was born has moved on to the next stage nursery, with the exception of one who had gone home for about a month and just came back (who is now his next door neighbor again). Almost every baby is tiny-ish so the ringing of alarms and chimes, babies screaming, phones ringing and the nurses shouting to each other, was a little too much too handle today.
We're crossing our fingers and praying for a better day tomorrow...
If Seth’s gained any weight these days, it’s all in the cheeks!!! Today he was only on his nasal cannula and when time came for feedings, the nurse swiftly fed the ng-tube into his belly, gave him his allotted amount, and then quickly removed the tube. All without Seth so much as batting an eye. Of course the first thing I did was grab the camera and started snapping away. I think everyone in there thinks I’m the crazy camera lady but like I told Brian, I’d rather have a million pictures that I don’t use than want to reflect on a certain day and not have the memory so readily available. Seth’s still being fed 2cc’s every 3 hours and his belly is still soft so we continue to sit and wait for poo.
When we walked in to see Seth this morning he was wide awake and kept staring at both of us with his big open eyes. It actually looked as if he could begin to focus in on each of us and spent a few minutes looking straight at Brian, and then he would turn and stare at me :) Of course the first thing I did was grab the camera. He probably thinks this is part of my face by now since each time he's opened his eyes, I'm usually standing right there, ready to take his picture.
Today we had no new updates, just a short meeting with the doctor for her to tell us that he's in the same condition as yesterday. We are able to hold him again and that's always a sign of a positive day. One of the nurses picked him up a little rougher than he's used to today when Brian was getting ready to hold him. Seth DID NOT like that at all and let the nurse know that he was having no part of being treated that way!! He's now fast asleep in the arms of his daddy who will surely keep him safe from the hands of the Nazi-Nurses :)
OK - so there's no nice way to say this, so I'm just going to go for it. I feel so guilty when I look over in the bed next to Seth and become so thankful for the little miracle we have. He's tiny, but he's perfect. Although we've had to face life-threatening situations and we understand we will most likely have bad days ahead of us, our little man is such a blessing.
Today, Seth had a little bit of a fever but we were both able to hold him and man does he like to take a good snooze. Brian was holding him and needed to readjust Seth's positioning. So he brought Seth away from his chest (like we normally do so the wires and tubing that are stuck to our skin don't tug when we scoot him up) and low and behold, I never knew how much one motion could piss someone off so bad. As I've mentioned before, Seth seems to enjoy his napping as much as our English bull terrier, Tyson, who can literally sleep 20+ hours a day. Much to our surprise, Seth wails out a big boy cry *I'm talking baby duck style crying here*. We both freeze and stare at him like 'was that him?' and he graciously repeated the performance repeatedly until Brian had him snuggled back against his chest. Then he puffed out that perfect little lower lip and fell asleep.
He's such a little ham...
Seth has the cutest dimple in the world on his right cheek!!!
Today has been a better day for us here in sunny Spain. The sun is shining and people are in good moods - you’d never even know it was a Monday. Actually, these days, I’m lucky if I even know what day of the week it is. I think I only knew what day it was today is because Brian went to work after having a couple days off. All the days seem to get muddled together when you’re on the same schedule everyday. We arrived at the hospital to find Seth looking like our perfect baby boy again, not like some kind of bloated infant who looked nothing like our son. Isabel said that she was able to stop the transfusions and he’s now back to having only a cannula again. She also says if he’s doing this well tomorrow, we can restart his feeding schedule.
Still stable and it infection seems to be getting better. Seth’s being weaned off his blood pressure meds and diuretics. His color seems to be getting better and the swelling in his belly is beginning to subside. The doctor today told me that his blood tests are coming back much better and he’s suspending transfusions as of now. Not being able to hold him sure makes time stand still here in the NICU.
Not much to report today... Seth is stable now but still requires transfusions (they are alternating whole blood and plasma). Stable is good - we’ll take that and run with it :)
Today feels like I’m a rock climber and my clip just broke. You know... that feeling of falling, hoping your safety clip is strong enough to catch you and hold you until you can save yourself from certain demise. We arrived to the NICU this morning around noon, as always. Brian headed straight to the bathroom so I entered to see Seth by myself. I should have known that something was wrong when the nurse asked me if I’d spoken with the doctor yet and then asked if I had come alone. I told her that Brian had come with me about the same time I looked across the room to see 3 nurses near his isolette, a ventilator placed near him, as well as a second cardiac monitor sitting on his shelf of already cramped machinery. I held my breathe as I walked in slow motion to his side. His was already intubated, his abdomen distended, and had a weird color to his skin that reminded me partially of bologna and vienna sausages. One of the doctors hurried over to me and told me in broken english that he was calling Isabel in so she could explain to us what was happening.
When Isabel arrived, she looked drawn and you could tell that days like these were some of the hardest parts of being a doctor in such a sensitive unit. She told us that he had a really bad blood infection - sepsis she called it. It wouldn’t be until later when I googled it and found out just how serious the infection was. She said not to be scared but they were going to be administering an aggressive treatment plan with him. He would be receiving a number of antibiotics, blood transfusions, and he would remain on full respiratory support. He was on blood pressure meds and diuretics as well. The next 24 hours will be a crucial time period for our little man.
Isabel had more good news for us this morning... Seth’s cranial bleeding is starting to resolve itself!!! We were worried after the last results that came back saying it was getting larger. I feel like doing a jig and I suppose it would be appropriate with it being St. Patrick’s Day and all :)
Seth has a belly button. They have removed his umbilical IV and have placed a new line in his leg. We were kind of bummed that he were still dependent of the little bit of oxygen in his isolette and knew he couldn’t be held without the extra support. We spoke with Isabel today about the tests results that came back. She said the scan of his abdomen hasn’t come back yet but the scan of his chest shows everything is perfect. His eye exam also came back looking really good and he’ll have another eye test at his 6 week mark to make sure everything is still going ok.
Today, Seth only has his ng-tube in and no cannula. He still needed a little bit of O2 pushed into his isolette but very little. We aren’t able to hold him today because his saturation levels seem to drop the minute he’s without the little bit of oxygen support he’s getting. He had his first eye exam today so tomorrow will be a big day to find out what his latest tests show.
When we went to see Seth today, he looked like a wrinkled old pouty man, with a nasal cannula and everything. Isabel was concerned because she ran some blood tests and found that his infection is getting worse. They’re having a hard time pinpointing what’s causing it so she’s having scans of his abdomen, chest and head done today. She also ordered another transfusion (plasma) and I now call the transfusions “wonder blood” because it seems to do incredible things and works immediately to make Seth feel better.
Time sure seems to fly on the days we get to hold Seth. Midway through the day, we usually need a break from the NICU and leave for an hour or so to eat, get some fresh air, or just to get a cup of coffee. It’s SOOO hard to have to put him back in the isolette, even for such a short amount of time.
Today was another good day. We got to the NICU around 12:30 and Seth was immediately placed in my arms. He was a little fussy and had a temperature. The doctor’s did some blood work and it showed that his infection was worse so they placed him on more antibiotics. I was able to feel his temperature break while I was holding him and he was able to fall asleep in my arms. At 2:30, the doctors needed to run some more tests so Brian and I went to eat and when we came back were able to hold him again. He got his antibiotics and a transfusion (plasma) while Brian held him. We both took turns holding him for about another two and a half hours each before we had to leave for the day.
Seth got a new neighbor today. He’s just a bit bigger than Seth when he was born. It’s weird to look over at him and see what a difference there is between them.
Today was a fantastic day here in Seth Land. We came in today and the doctor (Gloria Vega) said that Seth had been doing very well. He now had a cpap in place with just a small amount of oxygen and asked if we’d like to hold him. I think both of us lit up and said yes before she could get the words out!! They got him ready and I finally got to hold my baby boy for the first time. I was overcome with joy, and although it may not have been the same smell a regular new baby (his was more like the smell of a sanitized baby), all I could do was close my eyes, kiss his head and take as much as my Seth in as I could. After the quickest 45 minutes of my life, it was time to put him back so they could do some tests. The minute he was placed back in his isolette, his heart rate shot through the roof but Dr Vega assured us it was normal.
When we got back from lunch, his vitals were normal again, and Dr Vega came back over and asked if we’d like to hold him again. Brian was excited because he knew it was his turn to hold him. It felt like my heart was going to explode watching my two men together. Brian was so happy to finally hold him and Seth fell fast asleep in his daddy’s arms. Brian says he just wants to button him up inside his shirt and take him home :)
We heard Seth cry for the first time today!! Brian and I entered the NICU this morning and to our delight, found Seth extubated. He looks so stinkin cute! Isabel is very pleased with his progress. Today we sat down and talked about the concerns Brian and I have regarding Seth and how we’re worried that he is overstimulated. Although hard to bring up the subject because we love his medical care, we were happy to be discussing things such as developmental subjects rather than life threatening or life saving Issues. Isabel explained that the hospital has gone through a lot of changes over the last 5 years and that our thoughts and concerns are always welcome. We asked her if they would use them if we provided smaller diapers. She said that we are more than welcome to do so and that unfortunately, the hospital is only funded for and provided certain size diapers that don’t include really small ones. We also mentioned how we would like his isolette to remain covered and how we would like Seth to be positioned correctly. Christina (the EDIS worker) came at 3pm and showed the nurses how to position him correctly. All of them seems so interested in learning these new techniques and are open to doing things new ways. Every once in a while, we’ll get one of the older nurses who have their own way of doing things and with the language barrier, sometimes it’s hard to explain how we would like Seth to be handled. But when we left today, Seth was cuddled and extremely snuggled in his little nest.
Isabel says if he’s still doing this well tomorrow, we can begin Kangaroo Care!!
Last night they stopped suctioning from Seth’s ng-tube to see how his body would process everything on it’s own. They just have the tube uncapped and in a clear bag so they can keep an eye on anything that drains out. So far, its completely clean and he’s doing great. He’s beginning to look a little pale so they’re running blood tests to try and figure out why. He also had his catheter removed this morning and looks much more comfortable. The surgeon stopped by this morning and said Seth’s incision looks great and that he’s healing nicely. The next step will be feeding but Isabel is going to wait for a little bit just to make sure he can handle it. Seth’s swelling has gone down so much he can now open both eyes :)
No news is good news so we’ll take it!!! Seth remains stable and has still been able to pass things through his bowels :)
Brian had his first head-butt with a nurse this afternoon. He was looking at Seth’s chart that has his vitals on it to see how his night went and she told him that he wasn’t allowed to touch it or look at it. I thought he was going to blow. Isabel was called down, heard what happened and ended up telling the nurse that he could look at anything the pertained to Seth that he wanted. It wasn’t the answer that the nurse wanted to hear and she went home... we call her Nazi-Nurse. She’s the one who will stand there as alarms are sounding, and look for someone to be doing something wrong so she can yell at them for anything she can, almost as if the babies are her second priority.
Today we spoke with Isabel and she seemed relieved that Seth is doing so good. She is very pleased with the evolution of his bowel and says it is healing very well. She told us that she had taken some swabs during the surgery and that it came back positive for a fungal infection. She says since he’s healing so well she is now wondering if some of the swabs were contaminated and will be talking with the microbiologist to make sure. To be on the safe side she’s starting him on the antibiotics just in case. Seth is now completely off his blood pressure meds and diuretics and still pee’s like a champ.
Isabel brought up another concern she has today about his cerebral bleed. The last scan she took shows that the bleed is bigger but it’s still not effecting the brain tissue or causing swelling of any kind. They’re going to keep an eye on it over the next six weeks to make sure it doesn’t become problem. Seth will have a scan done every week to compare it with others. Even if it got worse and Seth had to be treated for hydrocephalus, Isabel says his prognosis would be very good at recovering with no long term damage.
His dependency of the ventilator varies from day to day. There’s not a significant difference to say if he’s doing worse or better but he’s stable and we love the word stable. Isabel was concerned that Seth was so uncomfortable yesterday, She also said there is an upside to it all and it’s the fact that Seth is now able to express that he is in pain. With everything he’s been going through - his surgeries, IV’s being changed, being poked and prodded, the tubes and countless alarms and lights; she’s not surprised that he’s not a happy camper. But now that he’s able to express he’s upset, they can better manage the pain and try the best they can to keep him comfortable.
Today was the first day I got to See Seth clearly. I’ve had such poor vision since my blood pressure was so high that they gave me a new prescription for glasses. I couldn’t believe how incredibly cute he is. He’s so tiny and perfect down to his tiny fingernails and long, skinny toes.
Seth’s belly looks a little swollen today but his doctor says he’s still stable. He seems to be in pain today and keeps making a boo-face and looks as if he could cry then he would. They ordered some x-rays and found that he has some gas in his bowels but the good news is that all the gas is contained within the bowel and not in the abdominal cavity. So although he’s in pain, it seems all it is a bit of gas so they’re going to keep an eye on it. The doctor is also happy that the gas travels from the beginning of the bowel all the way to the end which shows there’s not a twist or kink in there from surgery. They repositioned his vent and within an hour, his stomach seemed to go down noticeably. He may not be the happiest little guy in the world but he’s doing much better than he was this morning.
Today was crazy trying to get through the traffic to get to the hospital. For some reason, they chose what seems to be the busiest street in Cadiz to have a parade and festival for Carnival. At least we were able to find a parking spot easily as most Spanish don’t want to pay for a parking spot. It seems like they’ll drive around for hours to find a free one instead of paying to stay in a parking garage. When we were able to make it up to see Seth, we were pleased to find him still doing so well. Brian read his chart and his vitals were fantastic. He talked with the doctor and they’re so pleased with his progress that they’re planning on weaning him off of his blood pressure meds and diuretics over the next few days. He’s also beginning to pass things through his digestive tract. Whoo-hoo... we’ve got poo!! :)
Seth is 2 WEEKS old today!
It felt so good to walk into the NICU and see Seth doing so good. His urine output decreased last night but was up again this morning so we’re hoping his body keeps it up from here on out so he can heal faster. His color keeps getting better, he’s not as swollen, and his vital signs are beginning to stabilize. Carnival is happening all around the hospital this week and even though Brian and I are doing all we can to try and avoid any part of it - especially the crazy traffic, his nurses are joining in on the fun. Some were playing around today and wore masks for a while and looked like they were having a good time. So when he’s either obsessed with masks later on in life or is deathly afraid of them, I know where it came from. lol
Seth seems to be getting better by the hour and even though he is so swollen from the edema, he looks much better than he did yesterday. It’s so hard for us because even though he’s doing good today, we’re always holding our breath each time the phone rings.
Seth was even moving around a little bit today!!
It wasn’t until today when we talked to Isabel that I understood the severity of Seth’s condition. If his kidney’s were to fail, there would be nothing they could do to help him. He’s far too little for dialysis and we could easily lose him. Luckily for us, Seth started peeing again this morning. That means his kidneys are beginning to function and we are so relieved! He’s so big and bloated right now. I would never recognize him if I had to pick him out of a group of babies. My mom came today and although we know her planned vacation of visiting cool places in Spain is no longer the deal she was getting, she was happy to see that we were all well. She says Seth is really cute. It’s weird for us to hear that considering he looks nothing like he normally does. So it’ll be interesting to have her see how much his appearance changes in the next two weeks.
Not a very good day today, we’re still sitting and waiting to know how Seth’s body is going to handle the surgery. His heart rate and blood pressure keep fluctuating and the doctors are still trying to control it the best they can. He also has practically no urine output and his kidneys are shutting down. I was discharged from the hospital today and it feels so weird to be so far away from him. I’m going to be asking everyone to pray for pee. If we can get some urine output we stand a chance at Seth getting better.
I’m so lost today in a world of teenie-tiny. I feel like I’m caught up in a whirlwind and can’t quite grasp reality. I do’t know if it’s because of my blood pressure but I’m so glad to have Brian’s full support through all of this and I think both of us are wearing thin t this point. We went down at noon to talk to Isabel about how your night went. She pulled us into the conference room immediately when we got there and we knew that all our hopes that things were ok had come crashing down. It took all I could not to breakdown as she told us that his abdomen was still really distended and the new blood work showed that he was starting to get an infection. She had already called the surgeons to come and see you and that they were on their way. The surgeons arrived around 2:30 and examined him, pulled us back into the conference room, and told us that he needed surgery immediately. All I remember of the conversation is how many times they said the surgery was “high risk” and “how small he is”. They explained they would cut an incision across your belly and try to find where the perforation was, if there was any damaged bowel, and take care of the problem once they found it.
They moved Seth from his incubator to an open bed where he was more easily accessible to them. That’s when Isabel came up to us and asked us if we’d like to say goodbye. I could hardly breathe as we nodded and took our first steps toward you. It was the first time I’d ever seen him outside of the incubator. He looked so much smaller and more fragile than I had ever remembered. He was so sick that when we touched him, he didn’t respond. After a few minutes, Isabel told us it was time to go and we had to leave the room. Isabel and the surgeons decided to do the surgery in the NICU instead of an operating room because they can monitor Seth better with the equipment they had available and have better control of the room temperature. The staff placed barriers around him and told the other parents they would need to leave the NICU while the surgery was in process. They taped sheets to the windows so they would be completely private and the surgeons began the laparoscopy. About two and a half hours later, Isabel came out and told us that the surgeons were going to be stitching Seth up and that he was stable. She said his blood pressure had dropped significantly during the surgery but they were able to bring it back up and maintain it. The surgeons removed a 5cm section of damaged bowel including a meconium plug that had perforated the bowel and had spilled out into the abdominal cavity. The rest of the bowel seemed healthy so they were able to sew the healthy sides together.
We were able to go in and see Seth for the remainder of the night and going in and seeing him the way he was, was heartbreaking. Both eye were swollen and bruised and the incision goes almost all the way across his belly. I didn’t feel well and had to head back up to my room several times but Brian stayed by his side.
The surgeons sat Brian down and told him again how the surgery went and told him that if Seth is healed enough in the next few weeks, that they’d like to try feeding him. As the night went on, Seth began to look better and around midnight, there was another emergency in the NICU with a different baby so Brian was asked if he could come back tomorrow around 9am.
Well, Seth took us out of the month with a huge scare. When we went down to see Seth this morning, he had a cpap in to assist him with his breathing. His belly was distended and you could tell by the doctor’s face that something was very wrong. She sat us down and told us that she had already called the surgeon to come in and look at Seth because she had run some blood work and x-rays and didn’t like what she had seen. She informed us that his body was so stressed he would need to be intubated again. So he’s now back to having his little tape mustache and perma-grin from having the tube on the side of his mouth. When the surgeon came, he said that he needed to put the drain back in. The hardest part through all of this has been the language barrier. This particular doctor spoke French, wish didn’t help us at all and made it even harder because it’s not like we had a French translator on our hands at a moments notice. So I think at first we were left with some questions and concerns and were left to just wait and figure a few things out on our own. Tomorrow will be a big day to see how he did through the night.
Seth looks incredible today :)
His color is good, and he finished his first round of phototherapy today which means we get to see his face without the space-man helmet on. He he also been doing so well that the doctor was able to extubate him and I felt like time stopped when we were able to see his face not only without his helmet , but without the vent tube down his throat. I made sure to take a ton of pictures to show everyone. Brian makes fun of me for it but I’d rather have a million pictures of Seth than not have them and wish I had taken them. My goal is to take pictures every day so we can compare them as we progress in our journey.
Everyone keeps saying how much hair he has. I can’t imagine how long and thick it would have been if I had carried him to full term. One of the most fun things to do while we sit and watch him is to figure out who’s features he has. We think he has Brian’s chin , mouth and eyes, and my nose and hair. One of the pictures makes Seth look exactly like his Papa. No denying he has a ton of Grogan in the little guy. :)
Seth is 1 week old today!!! We were able to talk with the doctor on duty today (I’m sure we’ll learn all their names before we get Seth out of the NICU) and with the help of a translator on the phone, we were able to discuss how Seth is doing. He explained that during the night, Seth had pulled out his drainage tube but it was doing so well, they haven’t felt the need to put it back in. There doesn’t seem to be any distention and the site is draining access fluid nicely and the color and consistency of the drainage is good. Today, Seth hasn’t needed any support from the ventilator so if it stays that way, they’ll remove the ventilator tomorrow. His O2 saturation levels have remained at 98-100 percent without assistance!
It’s incredible how much we miss him the minute we walk out of the room. I don’t know what I’m going to do when I’m discharged from the hospital and have to go home without him :(
Wet met with Isabel at noon and she didn’t have anything bad to say. She had met with the surgeon before we had gotten there and she told us they had run a few tests and scans on Seth. She told us his cerebral bleeding continues to be present but doesn’t seem to be getting worse. At this point, Isabel believes it is so low grade that it should correct itself with no intervention needed. The scans also show that Seth’s ductus arteriosus is now closed and surgery will no longer be needed for that. The surgeon will decide in the next couple days if he wants to remove the abdominal drain or keep it in place. They think since it’s doing so well, the perforation will heal itself and he’ll be ok.
We also met with Christina, Seth’s Educational and Developmental Intervention Services (EDIS) specialist. She gave us information to read about preemies and taught us the proper way to touch Seth. Come to find out, we had been doing it wrong up until now. Sometimes it seems like we have so much to learn and even the simplest of things can be done wrong. The last thing we want is for him to be overstimulated because of something we can control. It will be really nice being able to work with Christina each week when she comes to visit.
Today was the first day that I went with Brian to the NICU at noon to meet with the doctor. This morning it was Isabel and she explained to Brian and I about Necrotizing Enterocolitis and what the outcomes could be if things got bad. She said at this point the drainage looks good and that he should heal nicely with just the drainage tube but he may have to have surgery in the future to examine his bowels. Some surgeons are more comfortable with preforming a laparoscopy and others prefer to put a drainage tube and wait 24 to 48 hours. We were relieved to know that it wasn't serious enough to need immediate action. She said that she was more confident in Seth's recovery since there didn't seem to be an infection. Since this was the first time I was beginning to explore the NICU, Isabel walked me through what each monitor, tube and IV was, and answered any questions that I had. It's a little more comforting to know what everything is and having the ability of watching Seth's monitors to see how he's doing during the day.
Seth's color is a little better today, his skin is beginning to have a normal skin tone instead of the reddish color he was born with. They have him under the lights for phototherapy so he now has what looks like a space helmet on. Today I was touching his hand with my pinkie and he reached up and clamped his perfect little hand around my finger. I was amazed by how strong his grip already is.
Today has been an extreme roller coaster ride for us. Brian got a call this morning and Seth's doctor told him to come down to the NICU as soon as possible. When he got down there, the doctor showed him that Seth has a distended abdomen and explained that the surgeon was on his way to insert a drain to try and relieve some of the pressure. Brian came back to my room and told me what was going on and said that the surgery would take an hour or so. You're told that having a child in the NICU is a constant battle of good and bad days, but I guess when it actually happens, you're never as prepared for bad news as you think you're going to be.
Time seemed to stand still while we waited for the surgery to be over. 45 minutes later, Isabel, who I was meeting for the first time, came up to my room to let us know how the surgery went. She said everything went perfectly and that Seth was stable. When the surgeon placed the drain, it was mostly gas and a tiny bit of fluid that came out. Isabel said the fluid that came out was a good color and consistency. If it had been grainy and dark, they would have had to do a more extensive surgery because it it would have meant that excrement had leaked outside of the bowel into the abdominal cavity.
My doctor came in and talked to me and said that it would be ok if I went down to see Seth for the first time. I was so relieved that they said it was ok - especially since he had the drain placed that day. So Brian loaded me up into a wheelchair and I got to see Seth for the first time :)
Lost in such a tiny world....
How am I ever going to learn all this stuff? I don’t know how to begin taking care of something so small. I look at pictures of Seth with medical equipment around him and I don’t know what anything is. I can’t even go down to the NICU and see my own son, nonetheless ask anyone what the different machines and tubes do. He’s stuck in his little world full of devices, tubes, and caregivers. I rely on complete strangers to fulfill the needs he has because I can’t care for him myself. I sit here every night and listen to babies crying in the rooms around me and I don’t even know if my baby is able to physically cry or not. Everything is spinning around me so fast and I can’t control anything going on. So I cry. It’s the only thing I have left in me to do.
My day is filled with muddled images of people coming and going and the sound of alarms ringing from the four IV feeders surrounding me. My husband who hasn't left my side, sleeps in yesterday's clothes on two chairs pressed together. I watch him through blurred and aching eyes, ashamed I couldn't provide better for our son. A number of people have been able to go with Brian to set eyes on our tiny miracle child behind a plastic wall but I've been banned from leaving my bed to be at his side. My heart aches with an uncontrollable guilt, sorrow, and emptiness that I couldn't begin to describe. So I lay here staring at the ceiling, wondering what to make of all this.
After almost a year of charting and medications, my husband, Brian, and I were elated to find out that we were expecting a child. Although I have congenital adrenal hyperplasia and needed medication and the requirement of finding out the gender of the baby at ten weeks, my pregnancy was completely normal and I had no complications whatsoever (not even morning sickness) until Valentines day 2011. I had a headache, was seeing spots, having Braxton Hicks contractions and couldn't stop shaking on when Brian arrived home from work that day. Just to be on the cautious side, we headed into L&D where they hooked me up to the monitors and found my BP to be around 168/90. I had also gained eight pounds in four days. They gave me medication to stop the contractions and lower my blood pressure. The doctor was cautious as well and decided to administer a round of steroids for the baby's lungs should I need to deliver early. I was admitted to the hospital, kept two nights and then sent home on February 16th on meds. I was back in the hospital on the 17th, where they found (even on meds) my BP to be uncontrolled and in the 200/98 range. I also had a significant amount of protein in my urine and had gained another twelve pounds. This is when they diagnosed me with preeclampsia. The doctor admitted me and immediately transferred me out to a Spanish hospital that had a level three neonatal intensive care unit. After another battery of tests (one showing the baby had stopped growing at 27 weeks), BP in the 230/115's, loss of eye sight, hallucinations, and another 20 pound weight gain, Seth Declan Grogan was delivered at 29 weeks via emergency c-section weighing 2 pounds, 4 ounces. I was on complete bed rest after delivering for four days receiving intensive treatment trying to control my blood pressure. It was only then, that I was able to be wheeled down to the NICU to see Seth for the first time. Upon seeing him, I knew our life had completely changed and that our story was going to be one filled with a mixture of intense emotion, family devotion, and a love for our son that would carry us through the roughest of days. I was discharged 2 weeks after delivery, never realizing the heartache it would cause walking out of the hospital doors with empty arms...