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.

Bunk Beds!!!

We finally did it. The triplets and Aidan are now sharing one room - with bunk beds - while Austin gets his own room! It's been an interesting couple of weeks while they are adjusting to the new freedoms this involves. I'm not sure I'm ever going to sleep again, but at least they are {mostly} happy about it.

Aidan's bunk - top left (sports)

Noah - under Aidan (animals)

Ethan - top right (pirates)

Nathanial - under Ethan (musical ocean)

Ethan and Nathanial's bunk

Aidan and Noah's

Nathanial's bed

Ethan

Noah

Aidan

Aidan LOVES being on the top and being the "big boy" in the room!!

Therapy and Decisions

{I know I am way behind on blogs and will update all of that soon, I promise!}

The triplets had therapy this morning. They are still getting development and speech therapy monthly. They are to get each one for ninety minutes per month, but we have found for scheduling purposes it works much better to do all three together and do both therapists on the same day.

I knew that some of the things Julie, our developmental therapist and lead person, was going to be bringing up but today it was very in depth and detailed, so I am just a little overwhelmed with it all.

Ethan is doing fabulous, when he's alone and comfortable. He chatters and even is starting to use some 2-3 word sentences (this week's big one for all three: where aidi??) and he speaks the most clearly. He's very up to trying to say anything you want him to and usually does a great job.

Noah still jabbers on and on the most, but speaks the least understandably. He talks non-stop, but he drops the ends off words, mumbles, stutters, and has a bit of a lisp. But he does love to tell a story. He also loves to sing! He is also putting some 2-3 word sentences together. Noah does the best on names and loves saying everyone's names and uses them the most often.

Nathanial is the slowest to do it, but is still doing incredibly well. He tells me whole sentences, but you can only understand, at best, half of what is said. He also repeats any word you tell him and does a great job with that. He also has a lisp.

All three are definitely, speech-wise, getting there. They are way behind their same-age peers, but I am very happy with the progress we are seeing.

We are having some major issues still with biting, and now pinching. And the pinching is not nice...it's vicious and they leave horrible marks when they do it. Ethan and Nathanial (especially Thano) tend to do the most pinching, but Noah does his fair share also. Noah tends to hit more often when he's upset.

Lately, we've been noticing a lot of autistic-tendencies in Nathanial. I don't even really know if they are autistic tendencies, but there is something very different about Nathanial than the other two. I am convinced at this point he is either autistic or has ADD. As he gets older, it is becoming more and more obvious whereas the other two seem to be mellowing a bit with age. I brought my concerns up to Dr. B at their well baby visit this week (I'll update about that in a different post later), but he seemed to think that we could hold off for a bit and just watch him. His logic is that he is already in therapy, uses a pretty strict schedule, and not a lot would be gained by trying to get him diagnosed with something right now. At first, I was OK with that, but the more Steve and I discussed it the more we thought as long as we have people in place and resources at our disposal, why not use it? So I brought up everything he's been doing to Julie and she agrees it warrants a closer look. She also observed several of the behaviors I was describing in the short amount of time she was here. She wants to bring in the school psychologist who has observed them before again, this time at home during a therapy session, to specifically focus on Nathanial. I am relieved to know we are taking this step now because if he is autistic, then we can start more intense therapy with him immediately. She will observe him at the next visit and then recommend to us if she thinks we should take it a step further or wait.

The other thing that was brought up, which I knew was coming, was preschool. They are "almost three" and will age out of this level of therapy at three. She says at this point, she can guarantee that they are not ready to be done and will all be on an IEP. Which means we need to be making some big decisions in the next little while about what our next step should be. Julie wants them in preschool as soon as they turn three for several reasons. I do not. I did not, ideally, want them to start preschool until they were 4 1/2, but I did know that would probably not really happen. I also wanted them to go to preschool where everyone else has gone. That is now looking more and more like it will not happen at all. We can, of course, object and say no to her recommendations, but honestly, they would be better off in the preschool she is suggesting. She wants them in 4 half days per week and then move to 4-5 whole days per week at 4 1/2. The preschool she wants them in has a special education classroom with a special education teacher. The more that I am praying on this, it seems this is where they really need to be and where they could most flourish. My one problem with it has been that it is not in the same district or town that we are in. And that would mean they would go to kindergarten not knowing a single classmate. Then I realized that Aidan only knows a few of his classmates this year because most of his class went to morning preschool and he went to afternoon. I do feel better once I thought it all through from that angle.

Steve and I will have big decisions to make in the next few months for all of the boys...will you pray with us that we follow God's direction and His will makes it clear which way to go?

Wordless Wednesday

Wordless Wednesday - Best of Buds (even - especially? - in sleep)