We received the results from Pearson's upper GI test and I'm afraid it wasn't good. He does have a significant amount of reflux and will possibly need the surgery to fix it. Right now they have increased his dose of reflux medicine and changed his feeding schedule. Instead of offering him 40ml during the day by bottle and putting what he doesn't eat into the feeding tube, they are still giving him the same amount in the bottle, but not putting the remainder in his tube in hopes that this will allow him to get hungry so he will want his bottle more. They want to see what he is capable of before making their final decision on whether he needs the Nissen and G-Tube. The Nissen will fix his reflux and the G-Tube will be to feed him through with a tube. The good thing about going ahead with the surgery and getting these procedures done is that we know his reflux would be fixed and his chances of aspirating into his lungs will dramatically decrease and with the G Tube we wouldn't have to worry about stressing to get him to eat a certain amount by mouth. The nurses have told us that once he gets home in a calm, quiet, and comfortable environment he will learn to eat much better than he will sitting in the NICU, so we aren't going to overly stress about that. Not to mention, it's just not good for his underdeveloped respiratory system to be over worked just to drink a bottle. It literally wares him out to drink a bottle most of the time, and he still isn't getting what he needs to be getting in order to gain or even maintain his weight, which is why he still gets fed through the tube in his nose. If they decide to do the surgery it would most likely be sometime next week, but that's not set in stone so anything can change. Once they do the surgery we would only have a week or two left before we could LEAVE!!! We know God has a plan for our sweet little monkey, and we pray that his will shall be done no matter what it may be. When I heard the results today it absolutely broke my heart all over again to think that Pearson might have to go through yet another surgery, even though it is super minor compared to what he's been through, it never gets easy to watch your sweet, innocent, and helpless baby have to go through one thing after the next and I'm almost to my breaking point with watching him go through so much pain and discomfort. At the end of the day I have to remind myself that I just need to be thankful that I'm able to go through this with him, because that means that he has made it through everything else, and not all CDH parents can say that. Pearson is truly our HERO! Please continue to pray for us and our family. We can always use your prayers.
Brandi, I know you all were hoping for different results! However, just remember that we are all praying for Pearson diligently. Connor still says a prayer for him every single night and asks pretty often "Is Pearson home yet?" -- We love you all and can't wait to see this cutie pie in person!
ReplyDeleteBrandi, Sarah had the G-tube for the first three months of her life. She still has the smiley face scar to prove it. It is a constant reminder after 22 years what miracles God can do when we act on our Faith and Believe. Sarah also had the same prognosis as Pearson with the chance of severe reflex and aspiration. I understand... Keep the Faith, take care of the possible and trust God with the impossible. Love ya'll and can't wait to meet my little great nephew. Donna Padgett
ReplyDeleteSo sorry that Pearson may need more surgery, but it does sound like it will solve a lot of problems. God will get you through this. Uncle Dave and I can't wait to meet him when you get home. Pearson just keeps getting cuter and cuter in each picture!
ReplyDeleteLove and Prayers,
Aunt Judy
First off, he is SO STINKIN CUTE.
ReplyDeleteSecondly, Im sorry you have to be on the CDH roller coaster, but am glad he is here that u can do so. I CRIED my eyes out in front of Dr Kays this morning as we are dealing with CDH issues. Still. I will tell u that the fact that Pearson IS EATING at all is a HUGE sign that things will get better in the eating department, faster.=0) If they get that foundation earlier in life it makes a huge difference. (Camden never did due to being on ecmo so long then on life support too long.)If you have any nissen/gtube ?s feel free to ask. Camden has been all gtube fed since birth and is just now starting to eat by mouth, yet still 100% on gtube. ((hugs)) Love checking in on Pearson and prayers for his precious future.
Brandi-
ReplyDeleteHugs! We were at the exact same place with Dakota at the exact same time. Her GI study showed significant reflux as well, and when the pediatrician came on rounds that morning he said that it was not up to him, but that he believed Dr. Kays would say the Nissen/G-Tube was needed. I was so disappointed. I went home that night and read blog after blog of babies with nissens and g-tubes and how they learned to eat and made myself okay with it. I got to the hospital the next morning resolved to be positive about it, but when I met with Dr. Kays he told us that although it would extend our stay, we could give her more time to learn to eat on her own and try treating the reflux with medicine, and see if it worked. It would be another agonizing and frustrating 3 weeks of highs and lows, sometimes feeling like a g-tube was needed and kicking myself for not accepting that sooner, and sometimes feeling so close to being there. Finally, we did a 48 hour room in trial with no ng tube and Dakota did not eat the recommended amount, but she ate enough to gain weight (barely) so we got to go home. Even at home, it was a struggle, and there were nights when I cried and cried wishing I had a tube to fall back on, but we made it through and Dakota remained healthy and always gained weight. Every CDH baby is different, and I am not telling you this to say that Pearson doesn't need a g-tube, but just that I've been there and walked that tight rope. Many prayers that whichever way it goes, it goes smooth. And many prayers for good eating. Also, if you have not already tried it, two things really helped us: the NUK nipple and throwing out the first part of the breast milk to leave the concentrated fatty breast milk (fortified with formula and corn oil) to help Dakota gain weight.
Hugs,
Jennifer
First I want to wish you a VERY HAPPY FIRST MOTHER"S DAY. Hope you enjoy spending it with Pearson with not too much stress. Now let me say I am sorry that the news this week was not better and I do know how you feel when you hear the words surgery again, no matter how minor. As a parent we never want our children to suffer, but each time I have heard these words I have tried to thank God that he gave the doctors knowledge to be able to fix any problems we had, even if it meant surgery, I also thank God that he has given Teddy & I and now you and Matt doctors who have a TRUE calling for their patients and the wisdom and inner feelings of what is best for each individual patient, not doctors who just do the procedure because it is available. WE HAVE ALL BEEN SO BLESSED. I am so thankful that you are still putting your trust and faith in God and know that God is using you and Matt and your faith in God to speak to your family and friends who need to know and learn and trust in GOD. AS ALWAYS Uncle Teddy, Aunt Lunda & BB send our love and prayers which are with you each and every day. Counting the days until you are home and getting settled into your normal routine. Let me just say here too from experience HOME will do wonders for Pearson and both of you, just keep hanging in there.
ReplyDeleteHAPPY MOTHERS DAY !!!!!
Lunda
Just checking in on my man and wanted to wish you a very blessed and beautiful Mother's Day! You're such a wonderful mommy already and Pearson is a lucky fella to have such a great role model and support system. And Matt's no slouch, either haha! I pray every day for Pearson's health and good progress. And if he ends up needing the g-tube, then that's just a small speed bump in his journey home... Hope you have a lovely day!!!
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