Jill is scheduled to have surgery at the end of January. And due to how difficult the feeding thing has gone this last week, we are trying to have the surgery moved up sooner. Honestly, another surgery is the last thing that I want, but at this point it seems like it is the best option to help her. I kept hoping that she would simply outgrow her acid reflux problems, but it doesn’t appear that is going to happen. Her motor skills are about 2-3 months behind because she doesn’t like to lie on the floor and move and play for very long because of the discomfort from acid reflux.
This past week she ate 555 ml less than the week before. Basically, for her that is like going for an entire day without eating. She is simply not getting enough calories. We add extra formula and oatmeal to her bottles and sprinkle formula and canola oil into her baby food to try to get her a few more calories, but it is still not enough. After talking with the surgeon, he convinced us that this surgery is necessary primarily because of the nutrition issue. He was telling us that there are numerous studies that show that babies with different health problems all perform a full letter grade behind in school if they don’t have adequate nutrition. Without proper nutrition as a baby, kids will never develop to their full potential.
So the surgeon will do a fundoplication procedure, which is basically wrapping the top of the stomach around the esophagus to prevent Jill from having her acid reflux problems. At the same time he may also repair a hiatal hernia (stomach protruding through her diaphragm) if she does indeed have one. And he will also put a gastric feeding tube in through her stomach. The feeding tube would be used to supplement feedings for at least a month. She may end up having the feeding tube for much longer, but hopefully she’ll begin eating more on her own. Note: the surgeon was also telling us that if she does indeed have a hiatal hernia and we put off surgery now, then the surgery will be more complicated the older she gets. And if we decide to just do the feeding tube then the fundoplication procedure would be more complicated later. Also, since she has a strong oral aversion to drinking her bottle, the longer we delay surgical intervention the harder it will be for her to enjoy eating. She will continue to associate pain with eating even after the pain is gone.
When I was telling the surgeon about my anxieties about her undergoing major surgery again, he told me it was like someone who had survived World War III being scared to do a drug raid in L.A. I really like the surgeon, but I’m not so sure about his use of analogies. The drug raid in L.A. still sounds scary. While the seriousness of this operation is a lot less then her first surgery, in some ways it is almost harder for me. We have had nine months to fall completely in love with her smiles, laughter, and fun baby squeals. As a parent you always question…are there any other alternatives?
Since Jill is old enough to now have a lot of stranger/separation anxiety, I’m not willing to leave her at the hospital alone. I’m planning on packing my bag and staying at the hospital for a full week (the expected hospital stay is 5-8 days). Bryan will take some time off work, but I need to make arrangements with friends and relatives in the area to help watch Katelyn for that week that Jill is in the hospital. And since we don’t want Jill getting sick while recovering from surgery, we will have to be extra careful that Katelyn isn’t around any sick people during that week.
If you are praying for our family, please pray that…
1) The surgery will be successful and that there will be no complications.
2) More engineering work will come into Bryan’s company so he won’t have to worry about the possibility of being laid off in the upcoming weeks/months (i.e. we will still have health insurance to help cover the cost of Jill’s surgery and hospital stay).
3) Katelyn will be cared for while I’m in the hospital with Jill.
4) Our family will stay healthy and Jill will fully recover from this new surgery.
3 comments:
Hello Appleby Family!
I just wanted to say, I know what you are going through and you are not alone. My daughter also has CDH. She was diagnosed at 20 weeks. We live in Iowa and went to Children's Hospital of Philadelphia for her birth in 2006. We wanted to do all that we could do to give her a shot. Doctors here thought she would pass away shortly after birth. Well she didn't. CHOP fixed her and we took her home after 47 days. She became a normal little girl. She was always thin, due to not wanting to eat well but she thrived! Then a month after she turned 2 she reherniated. I always had this fear. Knowing her life was hanging in the balance we had no choice but have her life-flighted to University of Iowa Hospital (another nightmare since they weren't very optimistic the first time about her CDH.) She went through a repair and ended up with an infection that nearly took her life. After 5 surgeries and leaving her stomach open to "heal" we brought her home on TPN. She is awaiting her finally closure surgery. I am a wreck thinking of all that might go wrong again.
I know your anxiety. I'm so very sorry that your beautiful daughter Jill has to endure all of this. It is so unfair to these darling children. I can't tell you it will turn out okay but I can tell you that children are so able to bounce back and it seems to help Mommies and Daddies feel a little bit better Oh and that they don't remember much at this age. (I know not much better huh?) It is so hard. Ava will probably need a Gtube as well. Stinks it just stinks. For us it seems so easy but for all that they have been through it seems the best route.
Know that I care and am praying for your family. If you need to talk I'm here. Jill is a miracle! You and your husband are her "Angels!"
~Terri L. Helmick
http://avaslifewithcdh.blogspot.com
mycdhlife@gmail.com
Hi There,
Saying prayers for all of you! I know the G-tube decision is a hard one... my son was over 2 before I finally gave in. He had his Nissen done earlier than that (reherniated). The G-tube was a huge help, the NG was just torture and I wish I had allowed the G-tube sooner. But I was determined that he would eat and wouldn't need it! :) A lot of these kids do better eating after the Nissen and G-tube. We actually only had the G-tube a short while and then upgraded to the Mic-Key button.... which was great and easy to take care of.
I know any surgery is scary, especially after all we go through with these cherubs, so I'm keeping you all in my thoughts and prayers and please know that anytime you have questions or need to talk, you literally have a huge pool of support and parents who are in your shoes who are here to support you! :)
Dawn
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
we're praying for you guys. it's got to be a hard decision, but i'm sure you guys are doing the right thing & that she'll feel so much better & eat better after it's all done. love you guys, shannon
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