Boe & I have prayed every night for it seems like forever, but more like since December-January. That we can understand what Porter needs. That we can find SOMETHING, ANYTHING, that will encourage him to want to eat, to find the desire. Basically anything to make his life easier.
Out of some miracle, around February I think, he finally decided it was okay to eat baby food. Before then he was on a mostly straight formula diet. He was eating 4, 4 oz jars of baby food every day & doing amazing. About that time we felt we might've made our break thru! He was seeing Melinda, our Occupational Theropist & we felt great about his progress. It was about this time we decided it would be so wonderful for Porter to have a sibling close in age. We felt like him being a twin, was meant to be with a sibling & how sad for him to miss out on that! For a lot of reasons more, & after praying about it, we felt strongly it was time to have another baby! Amazing right.... Well....
Pretty soon after I became pregnant Porter slipped back into his eating habits. Fighting, puking, the whole bit. The prayers began again! Something has to be able to help him! Every day I'd try to think of something I could do different. A food I could try. There has to be something he would LIKE to eat.... I never found it. I then turned to anyone I could find that I thought might have any experience with a difficult eater: Pediatrition, Theropists, friends, family, blogging community. Nothing helped. In my despiration I decided to find a GI Dr. Surely they would have had plenty of kids come to their office to figure out why they won't eat. I got on the phone with Primary Children's Hospital & took the very first available appointment, which was a 6 week wait & for the newest Dr in the hospital. We kept praying & looking for answers, but didn't find much. Our GI appointment finally came this past Monday.... Here is how our week has been since then....
Monday: we eagerly awoke & were off to our appointment. Boe was able to come with me & we were prepared with our list of questions & a regular menu of food & calories that on a good day Porter can eat. We explained his eating habits & his new behavior puking to get his way (whenever he doesn't like what Boe or I is doing, for example, trying to put him to bed or down for a nap, or not looking at him, he will caugh & then wa-la.... PUKE!) Dr. Patel told us before any of the tests were done that he already felt that Porter would benefit from a G-tube (a feeding tube that goes straight into his stomach. There permantly, until he doesn't need it any more. Maybe a month, maybe a few years). He felt that if nothing else we could use the tube to give him the calories he is missing. On a good day he gets close to 1000 calories, & hopefully doesn't puke. Dr Patel said he needs more like 1200-1500 calories a day to grow & thrive. He is basically barely getting by at this point. He explained that the biggest worry when kids aren't getting enough nutrition isn't that they are too skinny, it is that their brain doesn't grow as it should which could later hurt his learning abilities & such. Your brain only has one chance to grow. You can't decide to grow a brain later, it is what it is later in life. Just hearing that Boe & I decided the tube was a good alternative for Porter! We don't want anything to later hold him back just because it was hard for him to eat. On our way out we had his blood drawn for a whole bunch of labs to make sure he wasn't mal nutritioned or had any issues that would cause the eating issues, such as siliac disease or a thyroid issue.
Tuesday: we were back at Primary's for an Upper GI Scan. This was to check the anatomy of the stomach & intestines to see if he could have a G-tube placed, as well as to check if his stomach was able to drain & empty into the intestines properly. The test was extremely traumatic for Porter! I felt horrible! And because I'm pregnant I couldn't sit with him because of the radiation. Luckily, my mom went with me & tried to sing to him & help calm him down. The test is done with a video x-ray. They filled his stomach with barium to be able to see it on the x-ray. Results: Anatomy is great. Didn't show reflux on scan, but I felt very strongly that he does have reflux, it just wasn't showing.
Wednesday: We were back at Primary's for a Swallow Study with a speech pathologist. Another video x-ray with barium. She fed Porter different textures & watched him swallow it on x-ray to see what happened. Boe was able to be there for this one & that helped Porter a lot. Results: swallow is fine. Significant reflux when the food hit the stomach, at the time of the test probably caused by stress. However the important information about that was after he refluxed he was silently aspirating.
We were honestly a little surprised to find that he has been aspirating! This started a huge down hill of emotion for me. Overwhelming guilt for force feeding him for so long (because he wasn't eating because it is painful to eat for him), sadness that my poor little boy who has had to deal with so much already has been suffering even more, basically a feeling of depression swept over me that I just couldn't shake! For the past year I've gotten up every day & worked my tail off trying to take care of this little guy & all this time it wasn't doing him any good. Any mother will understand the complete overwhelming feeling of failure.
Thursday: I eagerly awaited the Dr to call me back for his interpretation of the test results. I waited all day & nothing. Not good for the worrying mother in me. The options spilled back & forth in my head. Mostly over the question of if having an additional procedure done along with the tube was necessary. A procedure called the nissen. This is basically to make so the stomach acid & everything else can't come back UP his esophagus. Food & liquids can still go down, just not up. A surgery only done when completely necessary. It can have weird life time effects, but if it is necessary it can DRASTICALLY help improve reflux & it's symptoms!
Friday: The heavens heard my pleas because Dr Patel called me first thing this morning! He said because of the aspiration when he vomited, he didn't feel comfortable putting in the tube without the nissen because even though he doesn't have to swallow his food, there is no saying that it won't still come right back up, which is very dangerous to fill his stomach & then have him aspirate it! He recommended us to Dr. Barnheart in the surgical department for a consult to do both procedures. I immediately hung up the phone & got a hold of his office. They are squeezing us in Tuesday morning for a surgery consult & most likely VERY soon we will be having surgery! It is a 3 day hospital stay which I am very nervous about but we feel strongly that this is what Porter needs! This is where all the fighting & pushing has lead us & he NEEDS this!
These are a few of the benefits we are looking forward to:
- Porter will hopefully develop a new relationship with food. learn to enjoy it & have fun with it.
- no more fighting him. He will be less stressed & be able to be a normal kid that plays & thinks about other things all day besides eating.
- Hopefully the attention/behavioral gagging will go away when he gets used to the fact that he CAN'T puke anymore. (may be a difficult transition!)
- We can focus on giving him positive & loving attention!
- He won't be in pain! Anyone who suffers from chronic heart burn or frequently swallows food or liquid down the wrong pipe may understand how painful that can become!
I've gone through an emotional roller coaster this week! Excitement, fear, depression, sadness, & enthusiasm. I've questioned my mothering abilities & why God doesn't answers prayers in the time we feel is necessary. I realize my spiritual strength is weak right now, but I am trying to focus on our incredible blessings & how amazing life has been because of Porter!
We are so blessed! Updates will follow.... Thanks for your continued support & watchful eyes as our family has yet to end our "NICU roller coaster" as we were warned about! And yes.... it has been worth it!
4 comments:
My cousins twins have the tubes to feed them and it has made a world of difference for them. Praying he gets everything he needs so he can be healthy and happy. :)
Oh, I hope this helps. Don't forget He's carrying you during these hard times. I'll keep you guys in our prayers.
Many prayers that today's consult went well. One way to look at it - based on how your week has been and how these things have developed. Had you gotten this answer before - it wouldn't have been from Dr Patel (you said he was new to the hospital). Maybe the delay in the answer to your prayer - was to ensure this particular doctor would be there to find the right solution. Also - hindsight is 20/20. It's so hard to want an answer and pray for an answer - but know it is never really in your hands. That's part of the battle we fight - the ability to surrender our worries/fears/nerves/etc to God and follow his path for us - no matter where it leads. Let me know if you need anything - I'm in West Jordan....at least until October.
I am so sorry that you have had to deal with all that! I totally understand the guilty/depression feeling. It is so hard to be a mom. You are doing the best you know how too and that is the best you can do. I hope that the surgery goes well. Let me know if you need anything.
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