First, I must start this post by sadly telling you that Baby Kaden passed away last night. He put up a good, hard fight for 18 days, unfortunately, CDH got the best of him. We wish to extend our condolences to the entire Kuehl Family.
Our thoughts are prayers will be with them in this time of need, as we do hope yours will, too.
Having said that, we can not stress enough how precious each moment we have with Jaime is. CDH is a very serious, horrible condition and no one knows exactly why it happens. One day, we hope that there is enough awareness out there for more extensive research to occur to find out better ways to treat (or stop) CDH all together.
As for Jaime, today started off a bit rough. The drs. had weaned him down on his vent settings 4 different times yesterday, so we think that Jaime spent most of the day catching up from all of that. He did receive his first (of many to come) blood transfusion. In rounds this morning they decided to discontinue his foley and his "belly line" was discontinued, too. The drs. even mentioned the words "repair surgery" to us today. I was absolutely horrified! I know that it must happen, but I'm scared to death of tiny little Jaime having surgery-if all goes well, there is a good possibility that it will be next week. YIKES!!!!!
This afternoon Jaime spent some time lying on his tummy and for the most part, really liked it. By this evening he was back to his calm, cool, collective self. Nurse Kim is on again with Jaime tonight-night shift, so we bathed him again. Here are photos from Jaime's 2nd bath night. We might have been playing "dolly dress-up" with him.
He didn't seem to mind, though! He was comfy and cozy (toasty Trosty) when we left him tonight!
The nurses have been so good about letting us do some of his care...changing him, cleaning his mouth, bathing him, dressing him-we are so grateful to them. All of those things really makes us feel like his mommy and daddy!
As for me, my lower right side is still really sore. Tom and I made a trip to Target to buy Jaime a few things, but I couldn't walk the store. Tom "wheeled" me around in a wheel chair that Target provided. We had fun shopping, but it still seems like a lot of effort on my part to do so! I have an appointment tomorrow at 10:30 A.M. with my OB to have my staples out. Hopefully, I'll have some in-sight as to why my side is hurting the way it does.
Anyway, here are some new photos to enjoy!
Please keep all of the CDH families in your thoughts and prayers as this is a very tough roller coaster ride for all of us!
Thank you,
Love,
Sheryl
Jaime is just too cute. :-) I love all the pictures of him. I hope you guys are doing well. Hopefully they will let you know why your tummy is hurting so bad. :-( I know you must be nervous about surgery, but like you know.. he can't keep his intestines in his chest. Our doctor kept telling us that. We continue to think of you guys. Jaime has a special place in my heart!
ReplyDeleteAsh
Sheryl-After my c-section I had horrible pain in my lower right side as well. The only explanation they gave me was that the doctor had retracted my muscles too hard during the surgery and it would take time to heal. It did with time and taking it as easy as possible.
ReplyDeleteThinking of you all.
Love,
Shelley
Sheryl,
ReplyDeleteJaime is absolutely gorgeous. Well done! :) I pray for him daily and every night. I know he will make it through and he's proven to be quite the tough guy! Keep the faith and stay positive. It's paying off :) I hope you heal soon as well. Post more pictures too!
Hugs, Susie
I am the mother of a baby with right sided cdh. She was born on Christmas day, 12-25-08, unexpectedly, at 32 weeks and 5 days (like your little guy, she decided to come early). She had to be put on ECMO on her 2nd day, but came off of it after less than two days and from there got steadily better and better. (Our best guess is that she got an infection which made her come early and get sicker on her second day; but once she got on antibiotics, started to get better fast). She recovered very quickly from her surgery (which was done about 2 weeks after she was born) and then just slowly weaned off the various forms of oxygen and very slowly learned to eat. We left the hospital after exactly 2 months on 2-25-09 and she has been doing great at home (although feeding is always a challenge ... we were lucky enough to be able to come home without a feeding tube, but that means the pressure is on to make sure she gets enough calories by mouth). I wanted to write to you because when I found out my daughter had right-sided CDH, I really couldn't find very many blogs on it or information that applied to it. Some information even said right-sided was worse, which the research doesn't really seem to support. Our surgeon, Dr. Kays, the CDH surgeon at Shands Hospital in Gainesville, Florida, told us that one thing he notices with Right CDH patients is that they may come in sicker but they seem to steadily improve, whereas Left CDH patients seem to be more on a roller coaster. Just an observation... obviously each baby has their own course. Anyways, I just found so many similarities in our stories and I want you to know I am praying for Jaime and know he will do great through the surgery and recovery. If you wish, you can e-mail me at jennifertrafton@hotmail.com.
ReplyDeleteWishing you all the best!
Jennifer Tenney
Marco Island, Florida
Mother to Dakota 12-25-08
I'm just so excited about Jaime's progress. And repair surgery next week? That's such great news. I'm so happy to hear that. I will absolutely pray to God that you find comfort with the thought of his surgery. Keeping you all in our thoughts and prayers always!
ReplyDeleteStephanie
He is adorable. And every moment is a miracle. I am very impressed by Jaime.
ReplyDeleteAs for your c-section - I did get infected - and was told never to allow them to use staples again. (That was with Noah.) Cecilia - I had stitches and healed very quickly. I so recall the pain with the infection and not being able to walk. Keep the area clean and rest as much as you can.
Keeping you all in my thoughts and prayers and sending that little wonder Lung Function chants,
Elizabeth