Thursday, September 24, 2009

NG Tube for Hannah

Well, Hannah didn't grow as much as we wanted her to. I took her in on Monday and she was supposed to gain a pound by that point and another one two weeks later. Before the appointment, I was looking at her and thinking her new "diet" seemed to really be working...she looked bigger to me and more filled out. I was sure she had already gained the two pounds. Then I also ran through in my head 'what happens if she's close?' No need to worry - she wasn't. She gained eight ounces, which for her is fantastic, but it is nowhere near where she needs to be to be gaining weight. She can't even maintain at that amount of gain. Upon looking through her appointments in my own notes, I was able to look at exactly what she weighed when and looking at the actual number, instead of just paying attention to the percentiles (because I already know how bad that is), was rather alarming. Way back in March, when she would have been six months old, she weighed 12 pounds exactly and that was alarming way back then. That was when they started talking to us about getting a second opinion about her weight - they started worrying around four months old. Anyway, so she was 12 pounds in March and as of Monday, she was only 14 lbs, 13 oz. That is a gain of less than three pounds. In six months...on a baby! I got it when they went through everything with me in Iowa City and I totally understood why she needed the feeding tube. But since Monday there has been a part of me that has questioned whether she really needed the tube or if maybe we were rushing things too fast. I knew it was going to happen, but I still felt like maybe I was rushing it too prematurely. Now I feel like I haven't done enough sooner and she is greatly paying the price. Now I have the reassurance that we are doing the right thing, which I needed for total peace in this situation. Numbers do not lie.

After Hannah was weighed on Monday, I "discussed" it with the nurse, who royally honked me off insisting that Hannah was "just little," (um, no - it's really a lot more than that) and she "was proportionate," (which is the EXACT problem - she quit growing!!!) and every other manner of denial. Now I am OK with this coming from people who do not understand the entire situation and I am even somewhat OK with me having been in denial for so long because I am not a medical professional who has the entire chart with letters from specialists in it. Why am I explaining this to her??? I am having a hard enough time and I felt like just breaking down right there, but I couldn't, and there I was trying to defend the medical need for an NG Tube being put in my daughter. Like I want this! Like I asked for any of this!

Finally, Dr. B came in (who is awesome, I might add) and we talked about everything and since I did know what was expected, I knew what he was going to tell me. He then made the call to Dr. V (specialist) who then called me back the next morning with her admission plan.

Hannah will be admitted to Iowa City on October 7 at 8 am. She will be on the pediatric pulmonary/cardiac floor (not real sure as to why that is). She will get the NG tube and lots and lots of testing. Testing for CF, Celiacs, and anything else that might be helpful. Then I will need to learn how to reinsert the tube. I have no idea what this process entails, but I am positive it will not be pleasant...but I will do it because I just want my baby girl to gain weight and start to grow. At this time, she will be discharged on October 9.

We have already (per Dr. V's instruction) set up a home health nurse to come in when we get home and developed a preliminary plan of treatment with them. They will come often at first, then depending on possible diagnoses, they will develop a new treatment plan. If it's as simple as this is caused by reflux, then it will be often at first until we are very comfortable and then slow down as we get more confident. She will always have a nurse available on call 24 hours a day throughout this process.

We have no idea how long the tube will stay in and any other plans at this time. Please just keep us in prayers. I am terrified of inserting the NG tube and a little nervous about how the boys (triplets) will handle things. Steve will be staying home with the boys while Hannah and I go down, so prayers for that would also be appreciated. And we'll keep updated on here as often as we are able.

Saturday, September 19, 2009

Happy 14th Birthday Austin!!!

Dear Austin,

I would LOVE to write something about how much you've grown and matured this year or how very proud I am of you...because I am. But I don't want to embarrass you too much. I know that life is rough for you sometimes, but you always persevere. You are becoming an amazing young man and I am so excited that I'm your mom and I get to witness that first hand - every single day. To watch your excitement about getting your permit soon; how much you love science and gathering facts about stuff; how much you love to read; the way you care for, help out, and play with your all makes me very proud of you. I am so very blessed to be able to call you my son and I thank God every day for giving me the opportunity to watch you grow and change. And maybe I am embarrassing you now, so I will quit, but I did want to say how very much I love you and how very proud I am of you.

Happy FOURTEENTH Birthday, Austin!!!!!

We all love you very much and you are such a joy to all of us!!

Wednesday, September 16, 2009

Happy First Birthday Hannah!!!!

Happy First Birthday, Hannah! We love you sooo much and you are such a blessing to us! What an amazing year this has been. You are so very special to each of us and we cannot imagine our lives without you in it!! Aidan meets Hannah for the first time - 9/16/09
Austin gets his turn to hold Hannah

Two very happy big brothers with thier baby sister

The "little boys" adore Hannah and are in love right from the start

Hannah Grace is ready to go home

Aidan and Noah are thrilled to greet their baby sister at home

Our SIX!!

Hannah Grace
One Month Old

Hannah Grace - Dedication at Two Months Old

Hannah Grace - 2 months

Hannah Grace - 3 months and quite the smiler!

Hannah - 4 months
Very curious about everything!

Hannah Grace - 5 months
Loves her baby
Hannah Grace - 6 months

Hannah Grace
7 months

Hannah Grace
8 months

Hannah Grace
9 months
Silly Girl
Hannah Grace
10 months
Growing up so fast!
Hannah Grace
11 months
You ADORE your Grandpa Kenny!!
(he's about the only person that actually gets to hold you!)
Hannah Grace
One Year Old!!!!

I am in awe that you are already a year old and in awe of the gifts that God bestows upon us in packages dressed up as "children." We are so very, very blessed and so very, very thankful to God for giving us you!! We love you, Hannah G!!!!

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.