Monday, January 28, 2013

Gavin Dean's birth story part II

This is where Gavin's story takes a turn.

A few hours after delivery, we decided to let the nurse take Gavin to the nursery for a bath and his hearing test while we were being transferred to the postpartum wing. We were getting settled and a NICU doctor came in to our room. She started talking about Gavin having trouble breathing and needing a chest x-ray. I was thinking to myself, this lady has to have the wrong room or something, she couldn't be talking about Gavin. But she was. My sweet baby boy was having trouble breathing and thankfully, the nurse in the nursery caught it and called the NICU to come take a look at him.

The doctor explained to us that it might be pneumonia. They took him for an x-ray and when the doctor returned the news was much worse than we expected. They had discovered that Gavin had a Congenital Diaphragmatic Hernia. It was explained to us that he had a hole in his diaphragm and his intestines had gone through that hole into his chest cavity, pushing his heart and lungs to the right side of his chest. The doctor then told us that Gavin was being transferred to Children's Hospital right away and that he would need surgery. 

I was able to get my midwife to discharge me from the hospital so that we could be with Gavin at Children's.  Many of the details are blurry to me, I was running on adrenaline and had been up for over 40 hours.  I honestly don't remember a lot from the first couple of days that Gavin was there.  .  We spoke to a lot of doctors and everything was explained to us.  His condition is very serious and there are many babies who don't survive this birth defect. 

Gavin's amazing team at Children's

Gavin's main doctor at Children's told us that he needed to be stable on the ventilator for 24-48 hours before they would consider doing surgery.  Of course, our tough little guy was stable pretty quickly and was even trying to breath over the ventilator.  They decided he was strong enough for surgery on the 25th.  The surgery took about 4 hours and he was very sedated afterwards.  The surgeons said he did very well during surgery and they were able to put his intestines back in place and repair his diaphragm laparoscopically.  They also told us that his left lung was a good size which was a relief to hear!

Gavin and Daddy after surgery

Gavin had his ventilator removed on the 27th and has been doing great without it.  He can cry now, although he doesn't very often.  He still has some oxygen support that they are weaning slowly.  Today he got to have pedialite through a feeding tube and hopefully tomorrow he will get to start breastmilk from the tube, then a bottle, and then we can hopefully try nursing.  It is going to be a process for him to learn to eat since he hasn't had to swallow or suck for food since his first nursing right after he was born. 

the first time I had seen his eyes since he was born

Today I got to hold him for the first time since he was born, I can't tell you the happiness and peace I felt having him in my arms.  We are hoping that his chest tube is able to be removed tomorrow as well as his arterial line.  After that, he only has a line into his belly button that will probably be the last thing to go.  We were told that he would be staying at Children's for 3-4 weeks.


Things have been hectic and days are running together, but we are beyond grateful that Gavin made it through a very scary diagnosis and surgery.  He has shown us how strong he is and we are so proud of him.  I am also proud of Emily and how well she has adjusted to not having her mom and dad with her all the time.  Steve and I are making every effort to have dinner and put her to bed together every night and I think this has helped a lot.  Steve's parents have been watching her during the day and she is loving every minute of the extra attention.




27 comments:

  1. Oh my goodness! He is so perfect! I'll be praying that things continue to go well for sweet Gavin! XO

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  2. SO SO thankful that Gavin's surgery and everything went so well and that his hospital stay will be weeks instead of months. I'm really hoping that he catches onto nursing quickly for you and that you guys get lots of bonding time in the upcoming days. I can't imagine how difficult everything was for you, but I'm so thankful you had amazing family to support and help you during all of this. You and Steve are amazing parents making Emily's evening routine a priority to do together, WOW. I'm sure you both have felt so torn on what to do, but you guys are incredible! Can't wait to watch Gavin and Emily grow up! I seriously am going to BAWL like a baby when I see those first pictures of Emily with Gavin! :-)

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  3. What a strong boy you have! We have been praying and it is so great to hear he is doing well. He looks great and is adorable! What a scary road for you but PTL for amazing doctors and nurses!!

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  4. Can't even imagine how scared you must have been. Big hugs, although maybe that sounds too cliche after all you have been through. Keep us posted- will be praying that he continues to heal and grow healthy!

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  5. Oh my goodness. I am in tears. Brought me right back to when Sam was in the NICU and all the wires and not being able to hold her right away. Thank God, Gavin made it through surgery so well! How scary! Your Mom must be his guardian angel, for sure xo

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  6. Congratulations, he is adorable!! Continued thoughts and prayers for your family.

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  7. Oh wow, what a scary situation to be thrown into, he's a strong boy, that's for sure. And thank goodness for the nurse who noticed that something wasn't right.

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  8. I can't even begin to imagine how scared you have been - and even if I tried, I am sure I would not come close.
    He is beautiful. The pictures of you with him had me in tears. Glad to hear that Emily is doing well with the upheaval in her life right now - you guys are awesome for making sure to be there for her evening routine. Also glad to hear that his NICU stay will only be 3-4 weeks, though I am sure that feels like a life time. Continued prayers coming your way.

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  9. Just...tears. I was in absolute tears last night reading this on my phone. I am SO thankful that he pulled through the surgery like a champ (and WOW - huge thank you to that nurse who realized something was wrong in the first place!!!). Just...wow.

    Lots of prayers for a speedy recovery for Gavin.

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  10. He is such a fighter!! I'm so glad to hear recovery is going well. You've been in my thoughts since the minute I heard the news and I swear I'm telling everyone I know about your tough little guy, so the positive vibes are coming from all over.

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  11. Hello! I am happy to hear that everything is going well for your little man! I heard about you from Heather at The Road Less Traveled. My name is Courtney and I blog at Finally Forever. My son also had surgery shortly after birth. We live in Minnesota and he was airlifted to Children's in Minneapolis when he was 2 days old after they discovered a Congenital Heart Defect. He had open heart surgery at 3 days old. He had another surgery at 6 months. He is now healthy as a horse.
    I know how scary surgery is, especially when it is on your teeny baby, but kids are so resilient! I can't believe how fast they bounce back! And being at a Children's hospital is the place to be! They are amazing there.
    We are sending our thoughts and prayers for a smooth and easy recovery! Hang in there! :-)

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  12. Hi friend! So glad to hear from you and that he's doing well. I can't imagine how scary that would have been for your and was thinking about you all week! I'm so glad they caught all that early and were able to get him to surgery and everything all fixed! Keep us all updated on the situation and I can't wait to see more pictures. From the above, he looks SO adorable!!! Great job momma on another cutie!!

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  13. Tears reading this. I can't imagine the fear you felt in those moments. I am so very very happy little G-man is doing so well now! He is seriously superbaby.

    And, excuse me...he is totally smiling in that one picture!

    I am so proud of you woman! What a tough spot you are in and you are handling it so well. Positive vibes coming from all of my peeps in AR! Love you!

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  14. I am so happy Gavin is doing so well with everything. He is such a strong little guy just like his big sister & parents. I am so happy that you should all be together at home in a couple more weeks. That is wonderful! Keep pumpking like a champ! Pumping is so so hard but I know how important it was for you to breastfeed him this time around. I am sure the hospital has a great team of LC's to help you when the time comes. And, I love that smiling picture! Such a handsome little guy! I am sure you are really looking forward to the time when Emily can meet her baby brother. How sweet is that going to be!

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  15. Wow, what a strong family you all are. I am SOOO glad is he dong well. It sounds like a serious condition, but also like he has exceeded all expectations. All ready an overachiever.

    My heart goes out to you all. My little brother recently had heart failure and had to go to the ICU at a children's hospital and it was terrifing, awful, and sooo sad. And that was my brother who was 17. So I just cannot imagine what you all have been through.

    I am so happy that you were able to hold Gavin and that he is improving sooo well.

    Side note: I LOVE his name. I love the name Gavin, but Gavin Graff, sounds like a rock star name!!!

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  16. It is so good to hear from you and to hear that even though you and Gavin have been through a lot, everything is going well. I know this is can't be what you hoped for for the weeks after Gavin's birth, but it sounds like you're doing an amazing job and that both Emily and Gavin are and will be thriving. Gavin sounds like such a strong little fighter. I can't help but think that amazing things are in store for him! I'm beyond impressed that you're able to be with Emily every evening, and I'm glad that Steve's parents have been able to help out. I'll be keeping you in my thoughts. Much love to you.

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  17. Like most everyone else, I was in tears when I first heard of all of this and tears again last night reading this story from you. I can't even imagine how you felt in that first moment, hearing that something wasn't right, especially after everything seeming so perfect to start off. I am so grateful you got to have those first moments close together, and then that the nurse noticed something wasn't right so soon after. He sounds like such an amazingly strong little fighter already! I am so thankful that he is doing so well already and will continue to fight through the next few weeks until he is ready to join his family at home. Emily is going to make one amazing big sister to this little guy and I can't wait to see the first photos of them together. Have been thinking of you and sending thoughts and prayers your way daily. Big hugs to you and your beautiful family.

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  18. So relieved to hear that things are going well, and that you got to hold your precious little fighter! I'm sending lots of love your way.

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  19. So glad he made it through and is recovering well!

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  20. Oh, Bridget - little Gavin is so perfect! What a precious little man... congratulations! I am so sorry to hear everything you guys have been through with his condition - how incredibly scary for you guys and Gavin. My heart completely goes out to you - I can't imagine the crazy journey you've been on to restore him to health. Be sure to take care of yourself as you and his team of doctors continue to nurse Gavin back to health! **Hugs** :)

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  21. what a precious little boy :) I am so happy to hear the amazing care he is getting at one of the best hospitals there is. i will continue to keep you all in my prayers and I just know each day will bring more joy and move you one step closer to bringing him home. xoxox

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  22. What a rollercoaster it has been for your whole family. I am glad that things have gone as well as they have and that Gavin has been so strong through it all. You've been amazingly strong as well. I can't wait to meet this little man!

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  23. He is absolutely beautiful! I truly can't imagine what you guys are going through, but I'm so thankful to read that he made it through surgery well. I will be thinking of you and your family!

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  24. He is beautiful! I cannot imagine what you are going through, but know that I will be praying for you, your family, and Gavin.

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  25. I am so sorry it took me this long to comment. I can't imagine what you guys hav been through. I am so glad to hear that the surgery went well.

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  26. OMG - I am just now getting caught up. Congrats on your beautiful baby boy. I love the name :)

    I am so happy to hear he is doing well and now home!

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  27. Hi Bridget, just came across your blog through another blog. Your story sounds all too familiar to me. I gave birth to my daughter in Nov 2011 and thought the birth was the hardest part. We were in for a surprise. She too was diagnosed with severe breathing difficulties and PPHN, had to be placed on a heart lung bypass machine called ECMO which saved her life, and stayed in the NICU for 35 days. Thats when I first heard of CDH. Although my daughter did not have CDH, i heard that a lot of kids who need ECMO have CDH. Thank God Gavin did so well and is doing great now. I still shudder and cry to think of those days. I hope you are feeling better...the first birthday will be hard, then it gets better. Also, did the docs say why they did not diagnose CDH at the anatomy scan?

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