Wednesday, September 9, 2009

Hannah's Update

I know that I am way behind on blogs and I will continue to update them and let you know when I do, but I also thought that in the meantime, I'll move forward with what's going on now.

Hannah went to Iowa City yesterday for her appointment with a doctor who "specializes" in failure to thrive. Mind you, until last week, I had no idea she had actually been diagnosed as FTT. It was a term that had been used, but I was never actually verbally told that she was definitely FTT. I was a little taken aback, but it also was not a surprise by any means. So we met with a resident first, Dr. A, whom I really liked. She was with us for a while trying to rule out all the common little things that cause weight gain issues. We pretty much did rule them out. Then in came Dr. V (whom I also really liked) and she talked about other things, also, and we went through them and she ruled out a lot of things just by looking at Hannah and her past labs and chart.

First, it is not syndromic. If she had a syndrome - any syndrome - there would be some physical evidence of that and there simply is not. By physical, I mean outward appearance. She is very proportionate (which is why I wasn't concerned, but is the exact reason they are so concerned), petite-looking, normal in appearance. So it isn't syndromic.

It's not hormonal. All of her hormone levels came back well within normal ranges when Dr. B did them a while ago - when she first started showing signs of not growing/slowed growth. Turns out that was an excellent decision also because if we did those same exact tests now it would look like she does have hormonal issues because her body is so lacking. So she is not repeating tests and is going by what was tested four months ago because horomonal things don't change.

It's not social. I "appeared to be intelligent" and "willing to move forward" which are both apparently good signs that this is not our fault. She said a lot of feeding issues are social, but does not feel that Hannah's are a result of that.

She also assured us that Hannah's relatively good growth in the first four months of her life were prenatally driven. In essence, I had really good prenatal nutrition and Hannah benefited from that for the first four months.

There are other things that we are currently trying to rule out as causes. One being that she has been so ingrained from the pain of reflux, that now she is "afraid" to eat. So she is back on the Prevacid so that we can try to rule that out as a possibility. And she has gotten wise to it. She hates it and repeatedly spit it out last night, then left it in her mouth for a while before spitting it out again after I gave her a bit of food. This morning, to avoid this battle, I crushed it up and mixed it with a spoonful of oatmeal - she was none the wiser!

We are to boost her calories even more for the next four weeks in hopes that she gains 1.5-2 pounds. I couldn't imagine trying to do more but we are and she is doing OK with it. She really doesn't eat as much as I thought she was or she's getting fuller quicker because of the calorie and fat laden foods. She is now also getting a glass of milk at the end of her meals which is 8 oz whole milk plus 1/3 c powdered milk. We are also not feeding her during the night if she gets up. Surprisingly, last night she did very well with not nursing. I thought I would get more of a fight out of her. Dr. V believes that she may be "topping off" all the time instead of being really hungry and really full, so now she is on six scheduled meals per day with nothing at all after her last meal.

If she doesn't gain 1.5-2 pounds in the next month, then we go to "phase two," which is already written down as her actual course of treatment because unless there is a HUGE miracle (which we know there can be) she will not gain weight. She will have an NG tube placed in the beginning of October. I say "if," but Dr. V kept saying "when." As in, "when she's admitted, we'll do a,b, and c." Everything was "when." And I know that is more than likely the outcome we will have, but I am praying and believing for a miracle yet. If/When the NG tube is placed, she will be hospitalized (at University of Iowa) until I can learn how to take care of it and then she will go home. We were not given any estimation of how long she would have it....just that it would be in place until she got back up to 30-50th percentile range because that is where they believe (based on early growth curve) she should be.

At first, I had a very hard time accepting it...I mean, seriously, hearing your child is that ill and needs that much of an intervention is very difficult. And I was honest with Dr. V and said that the emotional side of it is VERY hard to digest, but intellectually, I know Hannah needs this and we are willing to do whatever it takes to get her to gain weight.

Right now, Hannah has "Grade 2" malnutrition; which is "moderate" malnutrition. When I saw her length slowing down and her head circumference slowing down in the percentiles, my un-medically-educated self thought that was a good thing and meant that she was supposed to be small. And noone told me differently (not that I pointed that out, because I never did - this all went on in my head). I was informed yesterday that when you stop growing in length that is the first warning sign. And I knew that from Austin - but I didn't know it was the same for babies. I don't know why I wasn't able to generalize in this situation, but I wasn't. The second, and more serious, warning size is a lag in head circumference. It means that her body has totally stopped and said "wait just one minute - when are we going to get some food going on in here??" (or something like that....I may be paraphrasing a bit!) It also can lead to learning disabilities later in life if it isn't turned around NOW. So now is the time to be aggressive.

While she is hospitalized (if), she will be tested for Cystic Fibrosis. Again, I was not a very well informed patient's mama and I hate appearing ignorant (which is why I am always researching stuff). When Noah was little he had a lot of respiratory issues from being a multiple. One pediatrician said maybe he had CF, and another one later on said no because he was tested. Soooo, I assumed that could not be the case with Hannah and did not investigate further. Turns out they only test for the major genetic forms of CF and not the minor ones. So it warrants being tested with this many issues.

Steve and I have, once again, begun our research into causes of this and another thing that sticks out as a possibility (especially the more we research it) is Celiac Disease. One of the first signs of Celiacs is FTT and cranky/clingy-ness, of which she has both. Now I know just because she has some symptoms doesn't mean she has it, but we are going to mention this to Dr. V to get her opinion the next time she sees her. We are also going to continue looking at other things (one thing Steve mentioned - which to me seems out there, but whatever - is a parasite...INteresting...)

So we now have a plan and will have an even better idea if she will need the NG tube when she goes to get weighed in a couple of weeks. We still need to figure out the root cause of it, in my opinion, but for now this has to be good enough. We'll keep leaning on God through all of this praying and believing for a miracle and doing everything we humanly can for her, but ultimately, this is all up to Him and what His will is for Hannah.

4 comments:

Anonymous said...

Praying for you and that Miss Hannah is able to start gaining weight. (((HUGS)))

Love,
Gina

Anonymous said...

We are praying that Hannah will do just fine. Shes just like all her brothers a real trooper. Love,hugs & kisses Grandma Pam & Grandpa Rick

Ash said...

Hey Trista! We all missed you this morning at MOPS and we prayed for you! I will be praying that all of the stuff yall are dealing with will work out for God's glory and that you will be able to bless other mommies going through what you have experienced! You are a super mom and I feel so honered to know you and get to catch up on your lives on here!

odysseyofalifetime said...

Oh, Trista, we will continue to pray for you and for Hannah. We had the same issues with DJ for the first year and half of his life. I repeatedly asked my pediatrician about Celiac and he blew me off. When we finally took him in for allergy testing at almost two, one of the first things they tested for was Celiac. His was already so far off the charts that they told us to never give him gluten again.

It is a challenge to live with, but it is a much more livable challenge than many of the others that you face. Whatever the outcome, I am praying that you feel the strength that God is giving you to help you know what you need to do. You are such an amazing mom and advocate for your children.