This site is dedicated to our precious angel in Heaven, Gabriel Omar DeJesus. Gabriel was born January 23, 2008 at 12:39am prematurely at 30 weeks. Gabriel was and still is the light of our life. On June 19, 2008 at 11:05pm, Gabriel entered the gates of Heaven and now is our angel in Heaven. Our "little monkey" you will forever hold a special place in our hearts and we will never forget you.
1/25/2009 2:20:27 AM - 002016332828
Hey I know yesterday was Gabriels 1st birthday. I spent all day thinking about him. I know he partyed like a rockstar in heaven. I am finally seeing my nephew Jowell every other week and everytime I see him it reminds me of Gabriel. I wish I could have been there more. I regret it everyday. I miss you all so much. Gabriel thank you for not leaving me. I love you baby nephew...
I love you all
Lumari
1/24/2009 4:02:40 AM - 001038900695
Hey Xandra & Jose,
Today is January 23rd, Gabriel's 1st birthday. My heart and faith says he is in heaven and I whole heartedly believe that 100%. Today, he is celebrating the momentous occasion with heavenly cake and icecream (although, they might hold off on the icecream as it is freeeeeeeeezing). We love you guys so much and stand with you always. We are God-family :-) God bless. Love always, Walter, Joelle, & Angelina.
1/12/2009 3:15:18 AM - 002043360910
Hi guys,
Just wanted to say thank you for volunteering with us this morning. I know Gabriel and Camden were watching over all of us. Thank you for your support and friendship. I pray/talk to the boys all the time that they give us courage and strength. Hope you know we care about you guys!
12/16/2008 5:42:50 PM - 002040459365
Hey mama thank you so much for inviting me to the candlelight. It was very emotional but I am glad I was apart of it. I miss him dearly. He will always be my nephew.
12/15/2008 4:36:14 PM - 002047569026
Xandra and Jose,
I am glad you were able to come last night and be a part of the service. You did a great job. You are great parents and will always be to little Gab. He is soo special. I am glad to see also that you are honoring Gabriel by donating toys. You will always be Gabriel's loving parents and one day, you will meet up with that little guy in heaven. Hope you have a peaceful holiday season.
PS. Gabriel is such a cutie and I added a few comments to some of his pictures.
With love,
Wendy Bieberle
12/10/2008 5:42:13 AM - 002043360910
So great to talk to you tonight even though it was brief. I will call you tomorrow. It is so great to see that you are collecting toys for APH. I know it is hard, but you will help make some very deserving children smile on Christmas morning. Can't wait to see you guys this weekend. Thank you Jose for babysitting Stephen. Wink! Wink! He had a great time with you on Saturday!
12/8/2008 8:07:50 PM - 002040633019
Dearest Xandra-
Whew! I read all your posts, and I got very emotional. I can't even imagine what you are going through. I am glad to see that you are at least sharing your thoughts and emotions. That is so healthy for you both! Keep doing that, and Gabriel's memory will stay alive. Take it from me, you will NEVER forget those precious moments you had with him. I still remember some of the silliest moments with my babies.
Our kind and gracious Heavenly Father.. please lay your hands on Xandra and Jose today. Bring warm thoughts of their sweet baby Gabriel. Give them comfort Lord, and acknowlegement that he is with them every single day God. Continue to allow them to live by Your will, and receive Your blessing each day Father. Lord, let them see how this experience will bring them closer to You God, and that Gabriel is waiting for them...in heaven with You. I pray Lord for peace this holiday season God. I pray that you give these two the strength to carry on each day to see the next as a the opportunity to serve You, and serve others. In Jesus' name I pray.. Amen.
Love you guys!
12/2/2008 2:10:54 AM - 002043360910
You are always in our thoughts. We are so lucky to have met you guys. Our boys are in heaven playing and having fun together. Hope you can take some comfort in knowing that you are not alone, we are here for you. See you at tomorrow night's candle lighting. Love you guys! -Jannae and Stephen
11/30/2008 10:54:09 AM - 001038900695
Hey girl! I spoke to your mom via email on Friday. She told me you did your first thanksgiving dinner. I told her I was sooooo proud of you. :-) I'm also proud of you for going out and facing the masses on Black Friday, although I didn't think it was that bad this year. I went with my mom. In regards to you seeing all the pregnant women and babies, etc., that's just your subconcience honing in on what you long for most. Of course its hard & painful, but you're going through it my love. :-) And I love you all the more for your strength. My God be with you and Jose, especially during this Christmas season. May he send you both many new wonderful blessings and know that we are always here for you. God bless. MUAH!
11/23/2008 12:30:02 PM - 001038900695
Love you guys. You know I'm here. Emailed you a novel. :-) Standing with you always, The Just Family MUAH!
11/18/2008 3:07:08 PM - 002040882329
Hi Xandra and Jose,
It's wonderful to hear that you guys are moving forward. As a parent one never wishes to loose his or her child before their own lives, but you both have strived to keep his memory alive. You both have done a remarkable job and he is blessed to have had parents like you. He is so beautiful, as I looked through the albums and I know he is still with you through his spirit and soul. Keep strong and take care of one another. One day you will all be together once again. Until then, keep his spirit alive, as you both have chosen to do and stay close to your family and friends to get you through this. You can never replace a child, but you can definately still have a family, as you both are still young and full of life. Don't ever forget that GOD does not give you anything he won't get you through. May the LORD bless you both and bring you all you desire and deserve, as the love in your hearts has touched many people.
Always,
Michele LaPorte
11/17/2008 3:08:57 PM - 002040459365
I love this website. It keeps my nephew alive in my heart daily! You guys did an excellent job! I am always here for you guys. I love you and miss you!
11/16/2008 4:49:14 AM - 001081830838
Xandra & Jose,
This is a wonderful idea!! I have you guys in my prayers every night. Remember that God only does things to make us stronger and to help us become better people. Take this in stride and keep your heads up and your spirits happy that Baby Gabriel is watching you from up above. He wants mommy and daddy to be happy!! Remember I am here whenever you might need me!!
God Bless you guys and baby Gabriel!!!
Keila
11/16/2008 4:10:45 AM - 002040633019
What a wonderful idea! I pray every single day that you two can move to the next phase of your lives, and use this experience to become stronger together! I am excited to share this journey with you both! Take care!
Love,
Heather
1/10/09
Sorry it has been a long time since I have written. A lot has happened this year and it's only 10 days in...thank goodnrss all good so far. Our little angel is watching over us, thank you baby angel. Today Jose and I went to wide world of sports to volunteer for the disney marathon with the leukemia and lymphoma society to help our dear friends in honor of their son who passed from Leukemia. Tomorrow is the marathon and our shift starts at 3:30am. Regardless of the time we need to be there, I am actually really excited about doing it.
Today one year ago I was getting my last ultrasound with Gabriel still in my belly. He was actually being really stubborn at that time. All the previous ultrasounds he would be very active and wave hello to let us all know he wasin there, and this time he had such an attitude and did not want us to bother him, it was kind of cute. All was good at that time, he was already head down and I still remember those emotions of wow, he is head down and his time is coming soon, I just never really knew how soon he wanted to come out. Today seems like the start of a new journey of all our firsts. As much as I don't want to be emotional this year, I can't help but know from now until June for the rest of our lives we will always remember these times withhim, and June to December, we will alays remember the times we did not have him. I have realized that this is becoming a lifelong journey and unfortunately it will never end...
1/1/09
Wow, 2009 already...Happy New Year baby angel of mine. Last night was so much harder than I ever would have thought it to be. Usually New Year's Eve at midnight I have always been so happy about the new year and all the new comings and always almost happy with the year that just past. 2008 seemed to be entirely different, as much as I couldn't wait for 2008 to be over, it pained me to see 2008 gone forever. As one of my friend's put it the best thing that ever happened to my life was my son being born, yet my worst nightmare occured when my son passed away, all in the same year. 2009 is almost bittersweet. There is nothing I can say or do to bring back my baby boy. I hope 2009 brings us a much better year. What I would give to be able to hold Baby Gabriel one more time, to see him walk or talk for the first time...and I never will all I can do is sit here and think of our memories with him. I Love You my Baby Boy...
12/27/08
Merry Belated Christmas everyone. I hope everyone had a beautiful and blessed Christmas together. We had our Christmas on Christmas Eve. We had a good time with my parents, except it just did not feel like Christmas (of course excluding the 90 degree weather). I got my parents and Jose a coffee mug that was personalized for them and had a photo collage of all the pictures of them holding Gabriel. I don't think anyone will be drinking out of their cup. =) Jose also made a gift for me, he went to build a bear and made a monkey and in the monkey is a recording of a baby laughing(the same ring tone I have on my phone that always made me laugh in the hospital. The monkey's name on the birth certificate is "Lil Monkey" Thanks babe, I love it!!!Yesterday we went to some stores and at night went to Gabriel's Godparents house for a gift exchange. We got a gift from them that was a photo frame with his Baptism certificate and a picture of Gabriel, a monkey phto and another picture of all of us at their daughter's baptism. The gift is beautiful and I can't wait until we have a home that I can start putting up all of Gabriel's things. We had a lot of fun, as the night started to come to an end of course Guitar hero came out. We played for a little bit before leaving.
Please also keep our very dear and close friends in your hearts during this Holiday. This couple has been through so much this year, losing their 5 month old son to Leukemia and now his father at the age of 59. God Bless you...
12/22/08
Today was a bittersweet feeling for us. Today, we took all the toys to Arnold Palmer for the Santa Pak Project. We have been so blessed, thank you all for your donations. We had so many toys the 4 of us could not fit in my parents Jeep and we needed to take 2 cars. Once we arrived at the hospital, I think we filled 5 little wagons. Thank you all so much from the bottom of our hearts. I know Gabriel is proud of all that we are able to do for kids in his memory. After taking the toys to the child life room and seeing all the toys I was so happy to know the children that will be there on Christmas morning will be so happy. After dropping off the toys we were able to go up to PICU. Being back on that floor was very bittersweet, Gabriel helped me get through that moment knowing what we are doing is for the kids. I can't wait to start "Gabriel's Closet". I told the staff about it and they were so excited about it. One of the nurses even told me that his name comes up often and she was just talking about him the other day. I am so happy to know that Gabriel was able to have such a big impact of so many people's lives. He taught so many people so much without ever saying anything at all, and for that I am blessed that I had a son who impacted so many people, including myself. Thank you Gabriel, and I love you always and forever!!!
12/21/08
Today I spent the entire day dedicated to the Christmas gifts for APH PICU. My mom and myself made our gift bags for the Hospital with a teddy bear for all the children on the PICU floor. We decorated a gift bag and made a gift tag with a monkey (since Gabriel was our Little Monkey), he will not be forgotten. Hopefully this can be the beginning for "Gabriel's Closet". I would like to keep a year round donation for the hospital possibly do a clothing drive mid year and the toy drive at the end of the year. I had fun today making those bags. I will be separating all the toys we have been given as donations and will be taking to the hospital tomorrow with my family. Thank you all so much for your kind and generous donations, we have truely been blessed but most of all those children will be blessed Christmas morning when they wake up. Thank you all so much.
I will continue to separate the gfts for the children from the parents and by age group. We appreciate everything. I will try to take photos of all the toys we have been given so far before our trip to the hospital. I will try to post the photos on the site as well.
12/20/08
Today I wrapped some gifts for some friends and family, and a few weeks ago Jose and myself bought some wrapping paper. The roll that I bought was Santa with a little child and I loved it, didn't realize until this morning that little child is an angel with angel wings holding Santa by his shoulders. There was also little monkey's on the paper, thank you Gabriel for letting me know you were around today.
I also went out with one of my close friends Jannae, she and her husband also lost an infant at 5 months old. We had a good time, and exchanged gifts. Thanks Jannae for inviting me out.
Later on we went to Jose's brother's girlfriend's house (Monica) and had dinner with both of them and his sister, her hubby and their almost 1 1/2 year old son. We exchanged gifts after dinner. Xavier loved his little xylophone we got him and his little mini me basketball hoop Luis and MOnica got him. He is too adorable. Of course after we played Guitar Hero, would you expect anything else. Overall, we had a good time today, with family and friends. Thank you all.
12/19/08
Thank goodness it is Friday, this week has been exhausting. I have been working on my educational credits to maintain my x-ray license to make sure I have it done before the end of the month, as well as all the Holiday shopping we needed to get done, and collecting the toys for the Hospital. We have been so very blessed with the toys for the kids in the Hospital we thank everyone for their donations from the bottom of our hearts.
My educational credits for my X-Ray license has been exhausting in itself. Going through the book I felt like it was a run through of when Gabriel was alive and in the Hospital all over again. All the GI stuff, IV's, electrolyte imbalances, etc. It was almost hard to read those portions of the book, remembering those times going through that with Gabriel. I hope Gabriel is able to help give me the strength to be able to handle going back to school.
12/17/08
I didn't think today would have been quite as emotional for me as it turned out to be. As many of you know today is my birthday and I have been very bah humbug about it, since it would have been my first Birthday as a mommy...I was very blessed with my co workers today cheering me up and decorating my work space and trying to make it fun for me. It was very appreciative. Today I received a gift, I am not sure from who, but the gift was labeled from my secret admirer in Heaven, and it was a beautiful letter from "my little monkey" The gift caught me so off guard I broke down right there. That gift could not have been anymore perfect, other than of course Gabriel being here.
On top of my Birthday I am also doing my educational credits to maintain my x ray license, going through the test and the book, there are so many reminders of Gabriel and what he went through this year. It is emotional reading the book and remembering what happened to him. But at the same time as bad as that is, remembering what happened to Gabriel this year is also helping me understand the book and the process of things so much easier. I can only say Thank you to the APH PICU staff for taking the time to help explain things as well as you all did while we were there. I can only hope to be a small percentage as good of a nurse in the medical field as all of you have been to us. Thank you from the bottom of our hearts.
We are still collecting toys for the APH Santa Pak Project, and so far have been blessed with some items. We thank you all from the bottom of our hearts in helping these children and families during this stressful holiday season. I will be making the trip to the Hospital to take the toys on Tuesday December 23rd, if anyone else would still like to donate.
12/14/08
Yesterday was such a busy day...I went to my hair salon to get my hair cut and then we went to our friends house for a toy drive BBQ. They are also doing a toy drive for Arnold Palmer for the Hem/Onc floor in honor of their son also. They have become very good friends of ours and I know they will be lifelong friends of ours. We played Guitar Hero at their house (of course, would you expect anything different from Jose). After the BBQ, we went to my company's Christmas Party and had a lot of fun. There were a few times that I wished Gabriel was there with us and other's that my mind was occupied in a good way.
Today was definitely an emotional day for us. We went to the candle light so that our children's light can alway shine... Thank you all so much for attending whether in person or in spirit. All your thoughts and prayers are greatly appreciated. I know Gabriel is smiling in Heaven knowing his parents have been so truely blessed with family and friends helping us through this hard time. The candle light ceremony tonight was absolutely beautiful, I wish no one had to be there, unfortunately we are apart of a club that no one wants to be in.
After the Ceremony, we went out to dinner with my parents to celebrate my Birthday since Jose has class on my Birthday, we had a good time. I kept thinking about how this Birthday would have been my first as a mom, and how Gabriel should have been with us at the restaurant and I know he is here with us. It's just not the way it should have been. Usually I look forward to my Birthday, this year not so much...
12/9/08
Thank you so much Heather for that wonderful prayer in the comments, we really do appreciate your kind words. As some of you may already know we started collecting toys for the Santa Pak Project for Arnold Palmer, thank you so much for your donations that we have already received. From the bottom of all our our hearts we thank you.
I did some last minute Christmas Gift shopping today, usually I get excited about the shopping and getting close to Christmas, I have always loved this time of year, yet at the same time I really do hate this time of year. Last year this time there were a lot of things that both Jose and I said would be our last before being parents, and now this year I kno deep down in our hearts we still are parents. Gabriel would have been 11 omnths old this month, and it would have been nice to see him smile and probably get excited over something as small as tissue paper. But hopefully one day down the road God will bless us with a child that we get to keep here on earth with us.
As of right now I just feel so blessed that Gabriel is helping us through this Holiday season and pushing me to help the other children's families in need. Thank you all, and we love you!!!
12/6/08
Today Jose, my mom and myself went to Gabriel's Godparents Baptism for their Daughter Angelina Alexys. The ceremony was absolutely beautiful. There were some moments that I wished Gabriel was really there with us, and I know he at least was in spirit. His Godparents mentioned his name in the ceremony as a prayer and of course I lost it, but at the same time the feeling at first was sadness. But then I was happy because he was and forever will be remembered and not forgotten. I know his Godparents loved him very much as well as many people. It makes me happy that our little angel is still remembered and not forgotten 5 months after his passing.
After the ceremony Jose went to a friend's house with his brother and they played Guitar Hero...of course would you expect anything different from Jose =). I went out to the stores with my mom and we bought 17 teddy bears for the 17 rooms in PICU, we are going to decorate the gift bags and take some little games, word searches, books to the nurses and have them give to the families from "our little monkey, Gabriel".
Then my parents went to their Christmas Party and Jose went to a group meeting from school for a Science Project. I stayed home, watched TV but couldn't stop thinking of our precious baby boy Gabriel, I miss you my little monkey!!!
12/5/08
Well today is Friday, and the week is passing so quickly soon the month will be gone. I tell myself to think of everything one day at a time, but I can't help but think about January and just how hard that month will be and the months after. Today we went to a friend's Holiday Party, they had a chinese gift exchange so we wrapped our gifts before we left and I had a gut feeling there would be a baby there. When we got there it was fine and not too long after a couple walked in with a 3 month old wearing a bib that said "My First Christmas" I couldn't believe that I could not keep myself together and excused myself. The party was hard on both Jose and myself, because there was a baby boy there and at one point in the gift exchange the dad was holding the baby and the way he was looking at his baby, I knew exactly what Jose was thinking. I didn't think the party would have been as hard as it was on us. But we made it through and I excused myself when I needed to.
Baby Boy Gabriel, I miss you dearly...now more than ever. Your memories feel like they are fading away, the touch of your skin, hearing you cry, watching you blow your huge bubbles in PICU. We love you always and forever Baby Angel Gabriel!!!
12/3/08
Yesterday was one of the Candle lights by The Compassionate Friends-Orlando Chapter. Jose went with me, it was an emotional night for everyone that attended. There was a candle for all children that passed that had their name on it. As they named the children one by one, the parents and the families got to go to the front and light their child's candle. It was followed by a photo slideshow, that was very emotional for me. I saw my baby boy's beautiful face on the screen and I lost it knowing there is nothing left but a memory of him. One of my biggest fears is forgetting those memories one day, I think that is mostly why I wanted to start this site. To keep him alive to not only us but everyone else that loved our son.
The candle light was finished off with Amazing Grace being played on the bagpipe. A few months back we met a family at the meeting that lost their 5 month old son, I love and hate the fact that we knew them because of the situations, but I am glad that we are helping each other get through these hard times. Unfortunately everyone there last night was apart of a club that no one wants to be apart of.
Today is just another day...
12/1/08
Wow, I can't believe it is December 1st. Usually this time of year I am always excited because my Birthday is coming up and Christmas. I have always love the Christmas Holiday, this year not so much. Today was my first day back to work after the Thanksgiving Holiday, and I have to admit I come across things all the time at my job since I work in the medical field that remind me of Gabriel. Today for whatever reason seemed different. I answered a phone call today and it was a woman notifying her doctor that her father was re-admitted to the hospital for pneumonia, his pacemaker was failing and his organs were slowing failing. All I could think of was when we were in those shoes. Gabriel being admitted with Pneumonia to start and at the end his organs failing one by one. I almost got emotional with her on the phone because I remember being in those shoes, only difference was her father got to live his life, and Gabriel's life was 5 long painful months. Tomorrow is a candle lighting with the Compassionate Friends so I anticipate it being an emotional night, I anticipate it being emotional from here on out. After the new year, we come across his 1 year Birthday and all the anniversaries after that. Hopefully Gabriel can help walk us through all these 1st's.
11/29/08
Just when you thought I couldn't do anymore shopping this weekend, HA...I went again with my parents this time. We went out to Waterford, and it was nice, just like old times. My poor father went with us and we walked all around Waterford, of course can't leave without him going to his toy store "Best Buy". We walked and shopped and talked, I always loved going out with my parents like that, and it's been a long time since we did that. A part of me wished we could have been buying baby stuff for Gabriel this year since it would have been his 1st Christmas. I saw a lot of ad's that had Train stuff that I could see my dad giving Gabriel. It was all cute, and all I can do now is look at it and smile and remember Gabriel finally going home on February 17th, 2008 for the first time in his Choo Choo train outfit. As well as me dressing him up in his Choo Choo train outfit the day before his biggest surgery ever so he could spend the day with his Papa in his train outfit. I will never forget those days...
11/28/08
Black Friday, Jose and I always go out on Black Friday shopping for the Holiday. This year we got up at 5am and was at our first store at 6am. At the first store I saw a baby about as old as Gabriel would have been and he just looked so happy, and of course I missed him. We talked last year about how we would have Gabriel stay with his Grandparents while we could do Christmas shopping this year, and how this year turned out so different for us. I saw sooooo many pregnant women and so many people shopping for their children that as much as I wanted to be out shopping, I almost didn't want to see any of it. Jose and I went to our last store at The Florida Mall, and it was a holiday store and we bought an ornament for my parents to hang on the tree and we got it Personalized. That was emotional for me and I broke down in the store, that's when we said let's go home. Overall, it was a fun day shopping (I love to go shopping) but so very sad at the same time.
11/27/08
Happy Thanksgiving to everyone, today seemed like just another day. The only difference was I cooked my first Thanksgiving meal ever. All day cooking everything, it was fun and kept my mind off of a lot of the whole "Holiday". But when we sat down to eat dinner together it seemed bitter sweet because I know this should have been our first Thanksgiving as parents, and I still can't help but wonder what our life would have been like today. So today is just another day...
11/23/08
So today, our little man would have been 10 months old. My mind still wonders what milestones he would have had by now. Would we have been home from the hospital? Would he be making baby noises? Would he be crawling? I am so glad to have the support from all my family and friends. The last few days I have been emailing back and forth with Gabriel's Godmother (Joelle), thank goodness for her she is a lifesaver...I mean that Joelle. The waves of emotions that come in, you have truely helped me. One thing I always remembered Gabriel doing in PICU was blowing bubbles around his vent tube. I always told the nurses and everyone the bigger the bubble the more he loves you. I can only imagine the bubbles he is making now. I Love You too my Lil Man!!!
Today, Jose and myself did some Holiday Shopping. We sat down with my parents to decide what we will make for Thanksgiving Dinner. As much as I love Thanksgiving because for me it was always the start of the Holiday season. This year, seems like it's just another day. I know I should have a lot to be Thankful for, yet I don't see what I should be Thankful for because I am too angry that who I wanted most isn't here with me right now. I LOVE everyday and every moment I had with Gabriel, yet it's just not enough. Why was he taken, a sweet innocent little baby??? I shouldn't have to be wondering what milestones he would have by now, or what he would look like now.
11/22/08
I haven't been doing a good job this week keeping the site up to date. I have been sick since Tuesday/Wednesday with Strep Throat and a very high fever. Starting to feel better but still not there yet. Tuesday night we were given tickets to go see the Orlando Magic play the Toronto Raptors (my first Magic game ever). We had fun, the Magic won it was a good game. I am already anticipating the Holidays, knowing next week is Thanksgiving, I know I have a lot to be Thankful for, but at the same time I have nothing to be Thankful for. My family always puts the Christmas Tree up the weekend of Thanksgiving and we want to but it is going to be bitter sweet putting up the decorations and stockings knowing there is one missing. This year for us is at the bottom of our list as the worst year ever and I am not sure how to celebrate this year because I can't. This time last year Jose and me had so many plans for these "1st" Holiday's and that is the hardest. I still don't understand why this all happened, why us??? What I would give to hold Gabriel and look into his big beautiful eyes again. He was and still is so very special, and that void is still in my heart that can never be replaced again. Hopefully I can begin to feel better this weekend and maybe go out with some of our friends next week.
Finally made a site for Gabriel
Hi everyone, for a long time I have been wanting to create a site to keep Gabriel's memory alive. I know he is still very alive in all of our hearts, but I wanted to do more, and this is the start of it all. As some of you may know, we talked with the doctor's at the hospital and got both autopsy reports back (Gabriel of course stumped the Pathologist here and was sent for a second opinion in Texas to a Pathologist that specializes in the lungs) the second report came back with no findings. We still have no answers, but that was the way Gabriel always was and I guess you could say a part of what made him unique in his own way. I am going to do my best to keep this site up to date everyday. Jose and myself are still trying to go on with our lives with our angel in Heaven. It is hard going to the stores and seeing all the Holiday things up and not having what we planned as our first holiday with our first child. Gabriel wants our lives to go on and we are, we are just keeping his memory alive and we always will.
Funeral Information
FYI, to anyone that will be attending Gabriel's services in the next few days. We decided to wear white to celebrate Gabriel's life instead of black and mourning his death. If everyone can wear white it would be greatly appreciated. We will be in both black and white. We want to keep Gabriel's legancy and his personality alive. He was such a happy baby and I know he is very happy now and in no more pain. He is watching over our family and he will protect us forever untill we meet him again in heaven. The
funeral home also set up a page for Gabriel for anyone to leave any messages for our family even if they cannot attend. There is also a picture slideshow of Gabriel. We only placed pictures of Gabriel when he was healthy. We only want those memories for everyone to remember him. The website is
www.mem.com and go to search and put his name in Gabriel DeJesus. Thank you all for your love, and support during these last few months. It is greatly appreciated and it has helped us through our emotional rollercoaster. Thank you all again.
The DeJesus Family (Jose, Xandra and Forever Baby Gabriel)
----- Forwarded Message ----
Sent: Saturday, June 21, 2008 4:28:55 PM
Subject: Funeral Arrangements for Infant Gabriel Omar De Jesus
Good afternoon.
Gabriel's parents Xandra & Jose met with the funeral director this morning and finalized the details. I am forwarding the following information per their request:
Viewing Information
Date: Monday, June 23, 2008
Time: 6:00-8:00pm
Location: Carey Hand: Cox-Parker Funeral Home
Address: 1350 W. Fairbanks Ave., Winter Park, FL 32789
Funeral Home Phone: (407) 647-1942
Funeral Mass Information
Date: Tuesday, June 24, 2008
Time: 10:00am
Location: Good Shepherd Catholic Church
Address: 5900 Oleander Dr., Orlando, FL 32807
Church Office Phone: (407) 277-3939
In lieu of flowers, donations for the De Jesus Family may be directed to their home address.
FYI: There was a benevolent account opened in Gabriel's name a month or so ago with Washington Mutual. However, due to his passing, the account had to be closed.
God bless.
~Joelle
Gabriel Update
Previous email update on Gabriel:
Hello everyone,
I wish I could be sending out a good update about our little miracle baby G.O.D. The past few weeks have been great for him, He was started on a formula feed that was 100% fat free so it would not affect his chest drainage. He had a great night Wednesday night, and a great start to yesterday and unfortunately he took a bad turn in the afternoon. He was dropping his o2 sat and his heart rate would go down in the 30's and he was not able to bring it back up without medication...needless to say yesterday was a very busy day trying to get Gabriel stable. The doctor approached us and said she has done all she could for him and it was the beginning of the end right now. I almost wanted to be in denial, because he has made so many turns, he has proved the doctors wrong so many times. She asked if we wanted to hold him and we said yes, it was the first time we held baby Gabriel since the day of his last surgery April 29, 2008. We were very thankful and happy we were able to hold him, his vitals were very unsteady and we had to put him back on his crib because he could not maintain his body temp. To make a very long sad story short, Gabriel ended up entering the gates of Heaven, last night at 11:05pm Gabriel Omar DeJesus left us. But we know he is in a much better and safer place and he is not suffering or in pain anymore. He is now our angel that is watching over us, I know that deep down inside. Any future kids we have if we decide will always have a big brother Gabriel. He was such a fighter, and taught us so much everyday he was here. He taught me to live everyday to the fullest without any doubts or regrets, because the next day you may not have that chance again. Gabriel brought us all closer together and he will always be there for us. He is our angel in heaven. I will send out an update as far as any services. We will be trying to get all that together today. Thank you for all your support in all these months for Jose and myself. It really is appreciated all the help and support we received. Gabriel appreciated also all the help and support his parents and family received. I know he has made such an impact on everyone even if you have not seen him. We all hoped and prayed that he would be able to come home again, and he did, he went to his home where he is safe and sound. Thank you all again so much for your help big or small, it was appreciated from the bottom of our hearts. We love you all...
Love The DeJesus Family (Jose, Xandra & Baby Gabriel 1/23/08 - 6/19/08)
Gabriel Update
Previous email update on Gabriel
Hello everyone,
Again, I am sorry for not sending out emails sooner. This past week has been a really rough one for all of us. The doctor's tried to switch him back from the Oscillator (the beast of a ventilator) to the conventional ventilator. Gabriel did not seem like the switch and it has gone down from there. His body I guess was so stressed out, his white count went through the roof. But all his cultures came back negative with no growth.
This past Monday night, from 8pm to about 8am he had no urine, not even a single drop. Tuesday Jose and I kind of knew the reality of what was coming. Based on his labs at the bedside and his vitals changing so quickly, the doctor pulled me aside to talk to me, and the conversation was not good at all. Based on how that morning was going, he said it would not be too much longer before Gabriel's heart and lungs would fail. He talked to the kidney doctor and they said a renal ultrasound would not help any and he was too fragile for dialysis. He honestly did not think Gabriel would have survived out of the morning. He has been on mechanical ventilation today is 12 weeks and sooner or later he would start rejecting it. The good news of Tuesday was he survived and is still here today (thank you for all that knew and prayed for him and us). They rest of the week, was an hour to hour basis and day to day basis. His urine output still is not great, but we have some. It is just not enough to help take out all of his swelling. Once his swelling is down, hopefully they will be able to ventilate him better.
The doctor last weekend talked to Jose and I about possibly transferring somewhere else, as Gabriel has already stumped 40 doctors here in the hospital. The doctor said he cannot transport him on this ventilator, but once on the conventional ventilator they would discuss the possibility of that. The doctor said he would probably go to either Shands Hospital in Gainsville or Miami Children's. The transfer really scares me, because I know financially we will have a problem. But I know it is to help baby Gabriel get better.
Sorry for the short email, but it just has been a rough week on all of us, and not exactly the happiest. But again from the bottom of our hearts we thank all of you for your support and prayers for all of us. We appreciate all you have done for us. We are very lucky and special.
Gabriel Update
Previous email update on Gabriel:
Hello all again,
I am sending out a post surgery update. As you all know how the surgery went on Tuesday, Wednesday ended up becoming a very eventful day. I promise I keep on having these pep talks with my little man to make everyday a boring day, boring is great, uneventful is great...but he is doing his job as a son and not listening to his mom...lol it's my own little joke to keep me smiling through all this...
So on to yesterday, he started to swell as he is suppose to after surgery as he gets fluid overloaded, with the swelling, they had a problem ventilating him while he was on the ventilator. Hos CO2 (what you exhale) was showing on the monitor 115 (that number should be 35-45) they tried to manually ventilate him with the O2 bag and still the number was not coming down, they tried some blood work to check his blood gases and according to that test he was in his 50's so we thought it was the monitor reading incorrectly, after changing all the tubing and everything out the number did not change, so they tested his labs on another machine and it read 135...needless to say the number was very out of range. Due to that Gabriel Had his ventilator changed out yesterday to a more powerful one. They call it the ostillator (this machine is usually used on patients that are in a coma) The pressure on his other ventilator was already maxed out and this new one is able to give him more pressure to hopefully bring down his blood gases. His oxygen concentration is 60% (21% is room air) This new machine gives him fast, smaller puffs of air, This machine is breathing 600 breaths per minute, yes I did write 600 breaths per minute. Because the number of breaths is so high, he would not be able to figure out how to breath over it, so he is on a medication to paralyze him while he is on this new ventilator machine. Needless to say this room was a very busy room yesterday afternoon all the way through out the night.
Whe I woke up this morning, I saw the pressure setting on his ventilator had been raised and that was because his CO2 started to raise again in the night. So they are trying to bring that down. His blood pressure was very low yesterday and they added on Dopamine (a medication to bring your blood pressure back up) Through out the day yesterday, he was not peeing at all (worried about kidney failure) Last night they gave him 4 doses of Lasix (a diuretic) and he finally went pee!!!! YAY It is one of the highlights of the day. From 6am this morning to about 9am this morning he put out 60cc (2oz) YAY!!!! That is great!!! His heart rate now is still very high it is 200 as I am writing this. It is most likely since he is swelling he might be dry on the inside (ironic right) because all the fluid isn't in his vessels, its in his tissues.
His chest tube output has decreased dramatically, his is putting out now about 60cc in 24 hours versus 300-400cc in 24 hours.We are sooooo happy about that. I will do my best to keep everyone up to speed on little baby Gabriel. It is just another speed bump in the road, he has already gone through so much, I know deep in my heart he will come thorugh this. He is a very special little guy. Again from the bottom of mine & Jose's hearts we really appreciate all the prayers and support. We love all of you!!!
Gabriel Update
Previous email update on Gabriel:
Hello everyone,
I know a lot of you wanted to know the outcome from yesterday...and I apologize for not giving an update last night. Yesterday ended up being a little harder than we thought.
But first off I wanted to say I got to see my brother (he is in the Navy ad has been out at sea for the last 2 months) He lives in CT. They pulled into Fort Lauderdale Monday night and he was granted leave and he rented a car and surprised me yesterday at the hospital with my parents...Yeah!!!!
OK, so on to Baby Gabriel...so yesterday was his surgery as many of you all know, we were expecting the surgeon to go in and place clamps on his Thoracic Duct (Thoracic Duct Ligation) to hopefully stop the leaking, however the leak as I said before is very microscopic and would be hard to find. While the surgeon would already have the right side open he was going to try and re-inflate his right lung. The surgery was scheduled at 2pm, and at 12:50 they were ready. We followed baby Gabriel to the pre op area and were able to give him our kisses from everyone and ourselves of course...
I would have never expected to encounter what we did yesterday and either was the surgeon. We ended up getting an update around the first half hour mark that the surgeon made an incision and he started bleeding uncontrollable and they were having a hard time to stop it, a few minutes later we got another update that the more he tried to cut, the more he would bleed out. (He is still on Lovenox-the blood thinner) Lovenox was held that morning only, so of course I freaked out thinking about the Lovenox. We were not expecting to have the surgeon come out and pull us into a consultation room just Jose and I. He explained the bleeding was under control however, the more he tried to see the lung he was having a problem and found out his entire right upper lobe of his lung was completely calcified and would be the cause now of all the bleeding. He told us he needed to now remove the calcified upper lobe and the surgery is very risky in the sense of it can go really well, or really bad and we end up worse case scenario with Gabriel no longer with us. For me it hit me right then and there and for Jose it took awhile to sink in, so needless to say the rest of the time in the surgery waiting area, we felt like we were on pins and needles. Finally once the surgeon came out and told us the surgery was successful(in the sense of he made it through it) we were all sooooo excited, he was able to place the clamps in the thoracic duct, however it will take a few days to know whether or not it worked and was successful.
Within the hour of coming back to ICU, he was already awake and actively moving around, I think this was the best he has ever looked coming back from the OR. However, last nigh seemed to be a different story. Last night his heart rate seems to stay high from 170s-210s, yet again he looks comfortable, this morning when I woke up his blood pressure was very very low, the lowest I saw was 28/20 (I had flash backs from the night he coded) They will be monitoring him all day today. They wanted to give him Morphine, however that would drop his blood pressure so they are trying to keep him comfortable yet keeping his vitals good.
Thank you all again, I know how much prayer he had going out yesterday, and all the visitors Gabriel got yesterday. I know he has made a special place in everyone's hearts and this child is teaching us all a little bit about life everyday, I know I do not take anything...ANYTHING for granted anymore. Each day we have with Gabriel is a blessing and the power of prayer is sooooo strong. I know without all of the prayer yesterday for him he would not have made it, those surgeons had angels in that OR helping guide them through the procedure and we are so very grateful that we still have Baby Gabriel here today!!! Thank you all and I love you all!!!
Gabriel Update
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Previous email from Gabriel's Godparents:
Good morning :-)
Just wanted to let you know that baby Gabriel will after all be undergoing surgery today (Tuesday 4-29-08) around 2pm, maybe even a little earlier. Please think (and most importantly) pray for him, the doctors performing the surgery, and his family as all anxiously await the next step. The family has been told that this is a last resort surgery and a 50% success rate. He has been in PICU for 9-10 weeks now. But our God is a powerful God and nothing is impossible in His hands. Prayer and postive thoughts are very powerful. It's the only thing we can do to support one another and the De Jesus family. God bless you all and thank you for your support for Xandra, Jose, and especially little Gabriel. Xandra has expressed many times her gratefulness for the love and support they have received during this time.
~Joelle & Walter
(proud godparents) :-) |
Gabriel Update
Previous email update:
Hey everyone,
So here is the latest update, the surgeon has decided to go through with the "last resort surgery", Gabriel is scheduled tomorrow at 2pm. The nurses all say he will probably go earlier so we will see. Please keep us in your prayers tomorrow afternoon. I have attached some pictures that were taken in the last few days. One picture is my parents and Gabriel (my dad's first time holding him in 2 months), another is baby Gabriel and us...he is in his new bouncy seat for the first time (thank you Mimi & Ricky), and Gabriel in clothes for the first time in 2 months (he's in Premie clothes that are still too big) Thank You all for your support and prayers for him.
Gabriel Update
Previous email update on Gabriel:
Hello everyone,
Sorry it really has been awhile since I sent an update. Things got just a little hectic, and frustrating. Unfortunately we would end up taking our frustrations out on each other (arguing) which is never any good...Anyways, so here is the most up to date on Baby Gabriel
A few weeks ago the ICU doctor wanted to do this last resort surgery for Gabriel, because they have no more treatment for him, as they have done everything they can do for him. The surgeon was consulted and he was scheduled for this surgery however the ICU doctor and surgeon unfortunately were on 2 different pages leaving me in the middle to choose. Icu wanted a different surgery from the surgeon, Icu wanted the right side done (draining more fluid) the surgeon wanted the left side done, Icu wanted to pursue the surgery, surgeon wanted to wait. In the meantime the surgeon sat me down (3 hours before surgery) to explain the risks, pros/cons and he would come back in an hour so I can tell him my decision as to go through with the surgery or not.
Now to go over everything the surgeon said, the procedure he wants to do is a 50/50% risk it will get fixed, he said flat out from the get go that he wants to wait to see if Gabriel will heal himself as he has seen it be done in weeks/months (months scare me). He said he may not be able to fix the hole as it is microscopic and there is risk he wont find it to fix it. On the other hand he may find it by luck and fix it, except the pressure may find another place to go to drain in his body (not so good). I wish I could say this decision is so easy to make, but is so hard to decide when everyone says this is their last resort. Needless to say the Icu doctor walked in that day, sat down next to me and told me the surgeon was not going to do the surgery regardless of what we decided. I am not going to force a surgeon to do surgery on my child if he doesn't want to be in the OR already...that was hard.
On to last week...the attending from Icu last week tried to pursue the surgery again, he spoke with the surgeon of course, we were not involved. The outcome was if Gabriel continued draining as much as he was or worse, he would consider surgery this week. If he decreased, they would hold off. We understood tha and was content with that, b/c now we felt like we were going somewhere, and something would be happening. Throughout last week Gabriel's weight was on a rollercoaster ride, sometimes he would gain, and some days he would lose. On April 13th Gabriel's left side healed himself. He stopped on that side...yay!!!! I just wish his right side now would stop.
On to this week...Monday (of course now I am back at work) the surgeon re-evaluated Gabriel and said he would wait again. Last weekend he drainied some of the most, one day 480cc, another 360cc...His average was the same. Of course, I hit my frustration breaking point and went to the hospital to see what was going on. Only to find out the Icu doctor I thought was on our side, she had a conversation with the surgeon that afternoon, and I found out the next day she agreed with him to wait. On Tuesday I asked the day shift nurse if we could have a meeting with the attending Icu doctor and the surgeon (obviously not the same day) sometime so we could kind of all be on the same page, and appearantly she didn't like that answer and called me directly at work and told me she cannot pry the surgeon out of the OR for a meeting (which hit me the wrong way b/c as a parent I have a right to talk to my child's doctor and that the surgeon is). She said if we had any questions we could ask her the next day as she was on call at that time...we were not happy about that at all, and for the first time in the 9 weeks that we have been here I finally felt like we are getting the run around. In the meantime Gabriel is still losing weight. On Monday he was 4.75lbs, Wednesday he was 4.6lbs Friday he was 4.5lbs Yesterday he was 4.4lbs.
I spoke with one of the other surgeons I don't remember his exact words But I think he said Dr. Morgan (Gabriel's surgeon) would do the surgery this coming week. I know he was going to re access him this week (it is week 6 with the chest tubes and the draining) So I don't want to get my hopes up for the surgery, but at the same time not sure if I should get my hopes up if he goes through with the surgery. Now I am not sure what it is I want.
This weekend was a little out of the ordinary as Gabriel doesn't like to follow the medical books, as we all know. His heart rate stayed in the 190's to 200's almost all weekend. Unfortunately during the process of figuring out what was going on, his sedation was increased, he got multiple doses of morphine, versed and ativan all which put him to sleep but did not touch his heart rate or breaths per minute. Everything that would have caused the highs has already been ruled out, so last night they put the suction back on his chest tube and immediately his breaths per minute lowered (yay!!!). Did a stat chest xray and the the pneumothorax(the air in his lung) was the same, so they did a CT of his chest with and without contrast after placing him on suction, and the CT looked slightly better as far as the Pneumothorax goes. His right upper lobe of his lung unfortunately is still collapsed. Gradually, his heart rate lowered and is now from the 160s-180s.
Based on his labs this morning, the doctor is going to consult the Endocrinologist as his cortisol levels are low. So we will see what happens. In the meantime, the nurses are having fun with Gabriel, he has his boxing gloves on and he gets his daily mohawk, which suits him very well, lol. Sorry for the long novel. I promise I try to get better at doing it more often. Thank you again for all your care, concern and prayers. We are very special to have sooooo much supprt from all of you and I can't wait to be able to tell Gabriel when he gets older just how special he is and how loved by soooo many people he is. We Love you all!!!
Gabriel Update
Previous email update on Gabriel:
Good Morning everyone,
Sorry again for the delay in the email, as some of you may know during all of this craziness we moved this weekend. Since last week, the surgeons decided not to do the "last resort surgery" it was a crazy day. I don't even know where to begin to explain that day. I guess in short the surgery has a 50/50 success rate and they did not feel comfortable doing it, the surgeons stopped the suction on his chest tubes to see if it might slow down, so now we are waiting it out to see if he slows down his output from his chest tubes.
On Saturday, they did a venous test to see if he was clotting from the legs up since we know he is clotted off on his neck. The test came out good and from there he went straight to the OR to have the Broviac catheter placed (it is a long term central line). One of the nurses told us a kid had one placed at 6 months and just came back to have it removed, he is now 9 years old...wow, I hope he doesn't have it in that long!!! Everything went fine on Saturday.
He now has the Broviac placed and the central line is removed, he needed another transfusion over the weekend as he lost some blood from the Broviac placement, but so far so good. Yesterday's x-ray showed that he was retaining fluid on the right side so they added the suction back on his tube. This morning the surgeon removed the suction, his output in 24 hours was 350cc form his right side and 0 from his left. The surgeon thinks his left side might be healing so if they had to do surgery at least it would only be on one side. He has had 0 output from his left side since the 13th, so today the doctor wants to remove the left chest tube, in the hopes it will stay out. The doctor would like to try to feed him, but I am not sure if he will or not.
He was weighed last week and weighed 5lbs 3oz. On Sunday he weighed 4lbs 4oz. I am concerned about his weight loss, so today they will be re-weighing him.
So far, I think that is all of the news. I wish we had better progress, we are still paranoid about the right side, but I hope he is able to heal on his own without the surgery, so we will see.
Thank you all again for the thoughts and prayers...I know I say thank you all the time, but I know our prayer chain for him is working, he has and is already going through so much, he is a fighter and I know it is from all the prayer. Thank you again from the bottom of our hearts!!!
Gabriel Update
Previous email updates on Gabriel:
Hello everyone,
I wish I had better news but have been a little overwhelmed the last few days. So, since my last update a lot has gone on and I just don't know where to start...
Jose was able to glance at one of his chest x-rays and said it looks better as far as the collapse. Sounded like great news and it is as far as that is concerned. Sunday the doctor ordered a doppler test (a test to see the clots if any in his circulation) and the plan was to place the stent on Monday. On Sunday they were not able to do the test as they did not have the right size probes for how small he is. They did the doppler yesterday morning, and took him to the cardiac cath lab in the afternoon. I guess you could say that I mentally prepared myself that the stent would be placed and all would be fine, not expecting to hear the cardiologist tell me he was unsuccessful in placing the stent. He has 1 clot, it just has grown since it has been sitting for so long, due to his blood cultures coming back positive. His left/right Jugular Veins and the left/right Innominate Veins are 1 big clot. The cardiologist injected dye yesterday to see that his body has found other routes to supply blood flow by means of other blood vessels. Which is great thank goodness. I guess when he did his own ultrasound yesterday in the lab, previous tests might have shown the jugular veins, but in actuality was the clot itself.
So now what is the next step??? Well, now the doctor is consulting the general surgeons about going in to do something about how much he is leaking from his chest tubes. He has been putting out 500cc of fluid total in 24 hours from his chest tube. Yesterday he put out 700cc in 24 hours. 30cc = 1oz. If the general surgeons do not feel comfortable in doing this procedure (again because he is so small) they will get the cardiovascular surgeon to do it. The procedure is called Pleurodesis. I have been trying all morning to do some of my research on this procedure.
As far as the clot, it sounds like they want to keep it in place since he is finding other means of circulation. They have been giving him more blood and proteins such as Immunoglobulins and albumin to make up the fluid and proteins he is losing. He still is not able to eat formula. He still has the TPN (the nutrition fluid by IV).
Almost sounds like the doctors are not sure where else to go or what else is happening. The doctor today wants to try to test the fluid coming out to check his Triglycerides to see what his count is. I guess we will see.
I still have not seen the surgeons to know if they will be doing the procedure or when it might be. When I do find out, I will do my best to notify everyone. Thank you again for all your love, support and prayers.
Gabriel Update
Previous email update on Gabriel:
Hello everyone,
Sorry it has been awhile since I sent an update. I believe my last one was last week about placing the central line. The cardiologist was successful in getting the line in his groin area, yeah it's not in his liver!!! Since then, the line is great no clots, no leaks. During the course of all the moving in taking him to the cardiac cath lab to have the line placed, his left chest tube came out of place, and they removed it on Saturday. Of course, Saturday night he started to swell yet again and on Monday he had the left chest tube placed again. Since Monday he has lost a lot of fluid, yay!!!
We had a multidisciplinary meeting yesterday with the doctor to discuss all that has happened and the route they are trying to go. The clot is still there and has not gotten any bigger, he is still on Lovenox (the blood thinner). However, his blood cultures have been negative since March 26th...Yay!!! Now we are trying to see how long the cardiologist wants negative cultures before he places the stent for the clot.
His right upper lobe of his lung still looks pretty bad, and a few people told us they didn't think he would get function back on that lung, however, the doctors are still trying to get function. If they cannot, they all say that he will be fine with one lung, he breathes over the ventilator great and they think he will do fine.
Today he had another Bronchoscopy (they go with a scope and look down in his lung and try to get the collapse back up). This is his 3rd one. The surgeon told us he was able to get in, last time he couldn't. He was able to get out 20cc (30cc = 1oz) of white sticky mucous...hopefully this will help his lung come back.
We also discussed in the meeting about his Thoracic Duct that is still leaking fluid, although he is not getting any feedings. They are trying to wait it out to see if it heals itself, if it does not then the surgeons will take him again to the OR and surgically fix it. The doctors are really trying to avoid that, so we will see.
The update is not exactly great news, but at least some positives and seems like we might be moving in the right direction. We really hope so. He is now 10 weeks old (his due date was 3/31/08) and we have now been here going on 7 weeks in ICU. Again, we really appreciate all the prayer that is going out for our little guy. He is a strong little boy and a fighter and I thank GOD everyday for him. This situation we are in has made both Jose and I stronger as individuals, as a couple and as parents. It is so funny how we learn something from Gabriel everyday and all that he is teaching us, yet he is just a baby that can't talk to us. Thank you all again for your thoughts, your prayers, and your concerns!!!
I have attached a photo taken of Gabriel on 3/30/08 (we are not allowed to take photo's but the nurse allowed us...yay!!!)
Gabriel Update
Previous email update on Gabriel:
Hello all again, yet another update...
The echo and x-ray of course show the same, the clot has not gotten any smaller yet has not gotten any bigger, the x-ray shows the lung has not changed at all and has not gotten any better. Yesterday the central line was leaking (this is the 3rd one that is leaking) the doctor tried to re wire the line to fix the leak, and was unsuccessful.
The plan today is to have one of the Cardiologist try to place another central line in his groin area, if he is unsuccessful then he will place the line in his liver...I am kind of paranoid about that one. He has gone over the risks with these procedures with me, and one of the risks is bleeding...well he has been on a blood thinner for the clot for over a week now and his last dose was last night. The doctor informed me that he is aware of the Lovenox(the blood thinner).
He said while he has him under the anesthesia, he will try to look at the clot, if it is something he can take care of he will, he talked to me about doing a balloon angioplsty if he is able to, if not then they will do a stent at a later time after the infection has gone away.
His urine output doesn't look that great, but then again I do not know where he should be since he is still draining from the chest tubes. They have given him 2 doses so far of albumin today.
So far I think that is the news for today. Still not really moving forward anymore, just starting to feel like we are at a stand still.
Gabriel Update
Previous email update on Gabriel:
Hello everyone,
Here is an update so far on Gabriel. Yesterday morning he was doing great...at least what I thought was great. He was breathing well in the morning with the ventilator, and he took a minor turn in the afternoon. They did some lab tests on him and found out his Hemaglobin was 6.8 (needs to be above 12), his sodium levels have been low and they are trying to compensate in his nutrient fluids and extra doses to bring it all up. He got a blood transfusion yesterday afternoon. His Hemaglobin last night was 13 and this morning was 11.7 they still are not sure why his Hemaglobin keeps on dropping. His central line is still leaking and they are having a hard time with that. Today, the doctor will be re wiring his central line to see if she can fix the leak, at least this time as this is not the first leak in his central line. He is still getting his Lovenox injections(blood thinner) twice a day, and they check his coagulation studies 4 hours after every injection.
He had an Echo done yesterday and a chest x-ray this morning. I still do not have those results yet and not sure of the plan for today as I have not seen the doctor yet this morning. But I will keep you all posted.
So far today he looks nice and pink...yay!!! He has been sleeping this morning even a bigger yay!!!
Gabriel update
Previous email update on Gabriel:
Happy Day after Easter!!!!
Some of you have asked us what is the update, and I promise I have been trying to sit down and get something out...I promise I will try to get better at this.
Not sure if everyone is up to speed or not. Here is some general stuff that has been lingering. Gabriel has a blood clot that the doctors found at the beginning of last week in his chest. Probably the reason why his right lung still has not been getting better. They found the clot by default when trying to fix one of his IV lines. He also had his Thoracic Duct traumatized and sweeled immediately over night, the doctor placed a chest tube on each side of his chest. She cultured the fluid coming out and thought at first he had an infection and after looking at the fluid again she said it looked like Chyle, which I believe she said he was leaking Triglycerides. Meaning the higher they increased his feedings the more he was leaking because with the Duct leak he was unable to process the fats in foods. Therefore it leaked causing him to swell immediatley. On top of that, they did some blood cultures to find out he has an infection in his blood stream, thought it was from the IV lines in him as the longer they stay in the higher risk of infection you can get.
Today, he still has the blood clot. The doctor that started this morning explained to me that his Thoracic Duct was traumatized from the pressure of the blood clot in his chest and that is what caused all the swelling. He is still draining a lot. The night nurse told me during her shift he drained 300+ mL total from both chest tubes. Kind of scary that he is still draining so much from such a little guy.
His blood cultures are still coming out positive, they have tested all the IV lines that have been on him and a regular peripheral line, which have come out negative, meaning the infection is coming from him not the IV lines. The culture results have come back with a final report. The name of the infection in his blood is Enterococcus Faecalis. I have been trying to research all morning about this. He is on a third antibiotic to hopefully kill the infection. The only bad part is the infection can't get better without the clot getting better, yet they cannot remove the clot until the infection is gone. I am really hoping the 3 antibiotics can work together to get rid of this thing before it gets too out of hand. One of the problems with the 3rd antibiotic they placed is it is not compatible with his HyperAl (which is his only source of food nutrition going in him) he gets the 3rd antibiotic 3 times a day for an hour and during that time they need to stop his nutrient feedings.
Hopefully sometime this week the doctor wants to see if they will be able to to remove the ventilator. I would love that, but at the same time I want it to happen when he is ready. Jose & I got our easter present from the hospital this weekend though. We got to hold Gabriel for the 1st time in 4 weeks...We were sooo happy, granted we were sitting and Gabriel was on a pillow, but we didn't care. It definitely made our Easter weekend!!!
Little by little he is getting better, just seems like we take 2 steps forward, 1 step back. But at least we get to move forward. We are very thankful for all the prayers and all the thoughts. I know without all those thoughts and prayers we would not be where we are today. Thank you soooooo much again.
Love,
Xandra, Jose, Gabriel
Gabriel Update
Previous emails on Gabriel's Update:
Good morning everyone :-)
Happy day after Easter :-)
I know many of you have been concerned and are praying for our godson Gabriel Omar De Jesus. His mother Xandra sent out an update and I wanted to share the following with you. God bless and please keep those prayers coming. :-)
~Joelle & Walter
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From: Alexandra De Jesus
Sent: 3/22/08
Hey everyone,
So this week was another trying week. Monday he seemed to be doing great and the doctor's plans of him getting better seemed to change when Gabriel had a master plan of his own. Monday he had a lot removed and by Tuesday it all came back and even more. Earlier this week, unfortunately they had problems ventilating him and it turned out they think he has a leak on his Thoracic Duct and unfortunately not absorbing the fat in his food. They have suspended his food intake and is on an IV drip that has nutrients for him. Because of this leak, he swelled very much and now has a chest tube on both his right and left sides. He is draining about 150cc (30cc is 1 ounce) in about 24 hours and needs a new draining container. He is still draining a lot of fluid for how small he is. The tubes were placed Wednesday and today is still draining a lot.
They ran some tests to see if he has a blood clotting disorder, they think that may have caused all of this...unfortunately yet fortunately his tests came back negative. They are still working on figuring out the cause of all of this.
The good part to my week is I finally got to hold my baby for the first time in 4 weeks, the hospital allowed me to take pictures, and I have posted them. These were taken yesterday so they are about as recent as I can get to showing all of you what he looks like now.
Thank you again for all the prayers and thoughts that is all I am asking for right now...we are very blessed for all the thoughts and prayers you all have given us. I hope you all have a great Easter weekend.
Gabriel Update
Previous emails I sent with Gabriel's update:
Hi everyone,
Sorry it has taken me so long to notify everyone. As some of you may have heard I delivered Baby Gabriel Omar DeJesus 10 weeks early on January 23, 2008. He was born at 3lbs. 5oz. he stayed in the NICU at Winnie Palmer almost 4 weeks and was released this past Sunday. Yay, my baby is home. I have attached some photos of him from last week in the NICU. I have not downloaded my digital camera yet...been a little busy...lol. I thank you all for your prayers for Gabriel, he is doing absolutely great. As of yesterday he went to the pediatrician and now weighs in at 4lbs. 3oz. I will keep updating as I can. Thank you again!!!
This site is dedicated to our precious angel in Heaven, Gabriel Omar DeJesus. Gabriel was born January 23, 2008 at 12:39am prematurely at 30 weeks. Gabriel was and still is the light of our life. On June 19, 2008 at 11:05pm, Gabriel entered the gates of Heaven and now is our angel in Heaven. Our "little monkey" you will forever hold a special place in our hearts and we will never forget you.