GI Appointment

I made the trip back to the medical center on Tuesday to see our GI for our regular ,every 6 weeks follow up appointment. It was good timing because we had just gotten the results to his full tissue biopsy, and I was eager to talk to a doctor about it and what needs to happen next. So, as I said in my last post, B's full tissue biopsy was not conclusive of Hirschsprung's Disease. He does have ganglion nerves and HD is an complete absense of the ganglion nerve cells or whatever they are exactly. However, and this is a big however, our doctor explained to me that the ganglion nerves in his colon are abnormal. They are not what they should be, therefore, I guess they could be not operating in their full capacity, if at all?? So, our GI, is passing us over to the GI at TCH who is a motility expert. Motility is the way the food moves through the GI system. With this abnormality, it seems as though he must have a motility problem. We can expect that he will do some motility testing, and we will go from there. Our appointment with him is towards the end of April, so until then, we will wait. We have a lot of unanswered questions right now. But I wanted to try to give you an update despite my lack of information and knowledge. Hopefully, after I get a little rest, I can post a good 6 month birthday post with some pics. So check back in later!

Results

So, according to Ryan on The Office, blogging is out. But I continue on...mainly as a way to remember these days. I think a blog can create a wonderful virtual baby book in a way. And being a mom to young children is a precious season that flies by so quickly. I easily get lost in the busy-ness of it all, the diapers, the sippy cups, the silly questions, and so many firsts... So this is my way of remembering my days as a mom to little ones, even if very few people ever glance at it.

So, late in the day yesterday, the nurse at the surgeon's office called. She told us that the pathology was not conclusive of Hirschsprung's Disease. I honestly did not know what to feel in that moment. I felt relief that he would not be undergoing such an operation, but at the same time exhausted to be back at square one. I think in a way Hirschsprungs felt like it could be the beginning of the end. I don't think any parent wants their child to be diagnosed with HD, but something continues to bother him and his system and an answer to "why" would be a sort of relief...a relief from wondering and from testing. Our sweet little one would have had to undergo surgery, which is always scary, but we hoped he would take off from there and begin to catch up and feel good. I think we could see an end in sight as surgery could possibly "fix" our little man. However, mostly we are thankful that he is not requiring surgery because there were complications that could happen and recovery can go several ways. I think our best case scenerio would be that he would just grow out of some kind of horrible reflux, and begin to "thrive." So now, here we are wondering what will come next.

Being Still

No, I haven't completely forgotten to update the blog. We still haven't gotten the results yet. I talked to a nurse yesterday and she said we would probably be getting the results on Monday. So we are still waiting...

"Be still, and know that I am God." Psalms 46:10

I think in this time of waiting, we have been given the opportunity to just be still. We are not running around wondering what we need to do next, or how to make the next step happen. We are not planning care for Brant or figuring out the best way to handle another hospital stay. We aren't juggling Kyle's work schedule with appointments and testing. We are just being still, and knowing that God is God, and we are not. We know that both our boys were fearfully and wonderfully made. His works are wonderful. (Psalms 139) We know that God has a plan for us, plans to prosper us, and not to harm us. Plans to give us a hope and a future. (Jeremiah 29) We know that the same God that created the heavens and the earth, made our little guys. We know that our heavenly Father loves us an immeasurable amount, and we know we love Him.

I am ready to know if Beckett has Hirschsprung's Disease, and if his little colon can be "fixed," or if we need to continue investigating why his tummy hurts and why he is slow to gain weight. But I think in this time of waiting, we can be thankful for this time to be still and focus on what we know about God- all powerful, all knowing God.

Thanks for checking on us. I hope to have an update for you soon, but for now we are just being still.

Full Tissue Biopsy

B's full tissue biopsy went very smoothly on Monday. He handled the anesthesia just fine, and recovered well. We are so thankful that it all went so well! We only had to stay one night in the hospital for observation, and we got to come home yesterday around lunch. We should get the results from the biopsy sometime today. So we are just waiting and praying...

As a side note, I have another prayer request for Beckett. His formula intake has decreased substantially since the procedure. Please pray that it picks back up quickly and no weight is lost. Thanks!

I will get back to you soon with the results and the plan for what is next...Thanks for your prayers!

After the 8th floor visit...

We had our meeting with the pediatric surgeon yesterday and now have a very short term plan...like as in we know what will be happening on Monday. Not too much after that. It is definitely a day by day process.

Monday morning, B will have a full tissue biopsy. This is a biopsy that requires him to be under anesthesia, and he will be admitted for observation for the night. The biopsy is being done to be 110% sure that he has Hirshsprung's Disease before they do the operation. The doctor said that with an operation like this, you just have to be completely certain. The surgeon felt confident that B has short segment if he has it at all. It is possible to have a sort of "false positive" on the suction biopsy (the type of biopsy he had last Monday). So this biopsy will confirm the diagnosis, and help the doctors know what area is affected.

Our surgeon was very knowledgable on Hirshsprungs. He took his time thoroughly explaining the disease, how it affects the body, and how surgery is the only treatment. He was patient with us and gave us opportunities to ask questions. However, as always, I didn't think of the good questions until after we left our appointment...that tends to happen to me. We feed confident in the doctor's knowledge and experience. Despite that confidence, we remember that doctors are still human. So we pray for our doctors, pray that they will be cautious, wise and thorough.

B has been pretty happy lately. He is fascinated by his feet! He loves to play with them, watch them, and of course, chew on them. He has a big smile most of the day. He continues to roll around to his sides, but rarely does he want to roll all the way over to his tummy. And when he does roll on to his tummy, he quickly becomes frustrated and either flips back over, or screams for me to help him. He like standing in his excer-saucer and watching his big brother. He is growing and developing in so many wonderful ways, and we are so thankful for that.

Thank you for your prayers for our sweet little man. Please continue to pray for him, our family, and the doctors. Please pray that the doctors are thorough, and we are able to get a certain diagnosis (one way or the other), and that the doctors have confidence in whatever care needs to follow. Please pray for the procedure on Monday...that B would do well, and his body would recover well, and that we would feel peace. Thanks for checking in and thank you for your prayers.

I will get around to posting pictures soon...promise.

Hirschsprung's

As I said in my last post, All Too Familiar, we know more about TCH than I ever expected to know. And it looks like we are going to be getting to know it better. We will now be learning about the 8th floor of the Clinical Care Center when we meet with a pediatric surgeon. Let me back up...

Little one has been severely constipated. And I am not talking about the typical baby constipation, I am talking laxatives-and-suppositories-don't-work constipated accompanied by much discomfort and crying (the crying is by both of us). So as I mentioned earlier, the doctor recommended a test for Hirschsprung's Disease. Hirschsprung's is when the nerves in the colon do not develop to tell food to go through basically from what I can understand. If I was fancy and computer savvy, I could post a link to what it is...but I don't know how to do that yet. So feel free to google it. :) The GI explained it in a much more in depth way, but that is the general info. On Monday, little man had a manometry done where they test to see how the colon responds. B was squirmy and not real cooperative (who would be?), so the doctor decided to go ahead and biopsy the colon.

Wednesday evening, his GI doctor called and said that the biopsy results were abnormal and pointed towards this Hirschsprung's. She said we need an appointment with a pediatric surgeon as a next step to confirm the diagnosis and the area affected. She said that there may be more steps after that, but it looks as though eventually he may need surgery to remove the affected part of the colon. Hirschsprung's can affect either part or all of the colon, and our doctor believes it is only partial in his case. There is still a lot of unknown, so there is still a lot of waiting and wondering. Our appointment with the pedi surgeon is next Thursday morning. It looks as though we may be learning about a piece to the puzzle of Beckett's health. We are thankful for knowledge, but fearful of the unknown.

Thanks for your prayers for our sweet baby and our family. Please continue to pray for Beckett's health and the doctors' wisdom. Please pray also for precious big brother. One of the biggest challenges right now is balancing Beckett's care with Brant's needs as an active 3 year old. I pray that we are able to balance the two boys and meet their very different needs. I pray that Brant does not feel lost in it all and that he continues to be resilient. I have been so proud of how he has handled on the change around him. He is such a special little boy. I pray that I can find the energy to be the mom that he still needs me to be.

Thanks for checking in on us and we really appreciate your prayers during this time of waiting for what's next.

All too Familiar

As I pulled out of Texas Children's on Monday (more on this tomorrow), I had this strong feeling of this all becoming too familiar. I clearly remember our first appointment, thinking that this was a one time thing. We had no idea where we were going, where to park, or how to find the office. We would be told that he had GERD, maybe have his formula changed, and be on our way. How wrong I was! Now I know it all to well, as I am sure many parents feel. I don't need my GPS to get there anymore. I don't need the police on the corner to tell me where to go and park. I know the process for valet parking. I actually recognize the men who park my car and help me with my stroller. I have become an expert at parking an SUV in a parking garage not made for anything much larger than a Mini Cooper (cause who can valet all the time? :) ) I know where the vampire's nest is (read lab where his blood is drawn), where the McDonalds is and of course where to find Chick-fil-a. I know when my caller ID says, "Unknown" that it is the B's doctor. I know things about that hospital that I honestly never imagined I would know. And yet, I still don't know as much as many parents there. You look around the hospital, and there are so many children all there for various reasons, and you wonder where the parents get there strength. I honestly don't know how anyone can endure watching there child go through test after test, or treatment after treatment, or transfusion after transfusion, without a relationship with God. Many people have asked me how I still have any energy left, how I function with now months of no sleep and many stressors? And really, the only thing I know is that it is a God thing. God has given me peace that passes all understanding while we wait for a diagnosis. He has given me strength. Now don't get me wrong, there are moments where I do feel overwhelmed, but I know that He has loves me as far as the east is from the west and takes care of me and my family. And I thank Him for that...all of it, really.

So many other things have become all too familiar over the last five months...waking up at night to feed a baby, waking up at night too hold a baby and never return to sleep, pharmacies, spit up, doctor's offices, the smell of formula, the even better smell of spit up formula, recording medicines, recording feedings, size 1 diapers...

Please pray that we are able to keep on going in a medical world that is becoming all too familiar.

"His eye is on the sparrow... and I know He watches me." Matthew 10:29-31