Praise the Lord!!!

{l-r Hannah at the beginning of the journey in September and Hannah now}

Hannah went back to Iowa City today for another follow up with Dr. A and Dr. V. It was awesome!!! She is just doing amazing.

When she started this journey in September, she was 26.4" long (had not grown in length since June); her head circumference was 16.9" (had not increased since at least April); and her weight was 14 lbs, 2.5 oz (very slow gain, if at all) and her BMI was 14.3. She was well below any percentiles on the chart and, if you are familiar with BMI, that is well below a "healthy" number (normal is at least 18.5 and anything below 19 is underweight). She grew and grew and grew and NOW her numbers are so much better - it is sooo exciting! Her height today was 29.2" (that is almost THREE WHOLE INCHES in four months of the feeding tube!!!!!!!!!) and she is at the 8th percentile for her length compared to SAME AGE toddlers!! Her weight today was 19 lbs, 9.6 oz (that is FIVE and a half POUNDS!!!) and she is almost 3rd percentile....definitely within spitting distance! Her head circumference was 18" - almost TWO INCHES and puts her at the 30th percentile for her AGE!!!!!!!! That was a HUGE jump, especially since her head had not grown - at all - since at least April!! Soooo exciting!! Her BMI today is 16.15, which is still technically 'underweight' but definitely not as alarming. The most exciting part for me is seeing how she is doing on the overall chart...where she lands for her height and weight, irregardless of age (in other words, with peers who are the same length/weight combo as her, but not necessarily the same age) and that was slightly OVER the 25th percentile!!! And she did ALL THIS in only FOUR MONTHS on the feeding tube....God is soooo good. With phenomenal numbers like this, it is impossible to ignore the miracle of the Great Physician's Hands and to Him goes ALL the glory!!!

When we first put the tube in, both Steve and I were under the impression (prior to hospitalization) that it was a very short-term solution and would be completed within 6-8 weeks. We were told something quite differently when we actually were in the hospital and spoke with the doctor and dietitian. They both told us at that point that 6 months was way too optimistic or even realistic of a goal, but we could shoot for it as long as we were not disappointed if it didn't come out then. They both felt that, realistically speaking, she would need the tube for at least twelve months and probably more. We went with that because they are the experts and the ones who deal with these babes all day, every day. So that has been our goal this entire time - get it out in twelve months, but if she wasn't ready for it to come out then, then we would be OK with that. When we got home and I researched it, we found out it was a very real possibility that she would never outgrow the need for supplemental feeding and may eventually need a g-tube (one that goes directly into the tummy). It is super common for babes with reflux and other issues that cause growth problems. I was not willing to accept that for Hannah, but it has always been in the back of my mind. Now, though, we were told that if we wanted to do a trial run without the tube, with the knowledge that if she didn't do well it would go back in, we could try it. Dr. V feels that Hannah has probably recovered all lost weight, length, circumference, but there is a small possibility that Hannah has more growth in her. Because of that and because Hannah is just now starting to really do well feeding orally and on her own, we decided to hold off. So the new plan is to see if we can recover any more growth between now and April 2nd and at that time, wean off the feeding tube completely. That is just astounding to me....that in less than six months, she may be done with it! Again, all glory to God who has healed her!!!

Hannah has done so well through all of this that Dr. V actually uses Hannah in her lectures! She said a lot of the medical community still believes that lack of normal physiological growth (aka failure to thrive) is always due to neglect on the parent's part. She said that she uses Hannah constantly now to prove that when parents are willing to do whatever is necessary medically, are intelligent and on board with doctors, instead of bucking them the entire way, that great things can happen. That is still not to say that all children with LNPG are all products of parents that aren't on board, either. She just said it is much easier to prove that this can happen to normal children in a healthy family and parenting situation and when everyone works together for the good of the child, amazing growth can happen. She said often parents are so angry when it is suggested and refuse to do it, so then DHS ends up getting involved and then parents won't do what is necessary for the child, either, so then they don't end up growing either. She said that she can tell with 100% accuracy that Hannah's issues are completely related to reflux and not at all related to "social issues." It was very vindicating to hear that from a doctor and she kept telling me what a great job I was doing and that I deserved congratulations, also, but I am only doing whatever is in my power to do for Hannah as her mother and praying over the rest of it so that God can restore her health in ways that only He can. It breaks my heart that there are parents so angry at "the system" that they fail to see what is necessary for their child. This was not an easy decision for us to make. This was not easy for me (or Steve) to hear that it was needed. It definitely seemed radical at the time. However, God gave me a great peace about it all when it became obvious that it was needed and He has since showed me over and over that we made the right decision for Hannah. And that's all I wanted...was a little reassurance that we didn't go outside His will through all this and we were doing what was medically needed through the doctors.

I am so excited to see the amazing strides Hannah has made. It just leaves me in awe of what is possible!!

Hannah's Gaining!!

Hannah had her follow up today in Iowa City with Dr. V and Dr. A. It went AWESOME!!! I have been feeling very defeated and frustrated because it appeared her weight gain was very slow. She has been gaining three ounces a week every week since she was discharged and then she gained eight last week. She gained four ounces this week, according to their scale (it's difficult to say if this is accurate because it is best that she is weighed on the same scale every time at the same time of day in the same place, etc., etc.). So I told the nurse my frustrations. I felt that it should be more, as she is still eating table food, drinking calorie enhanced milk, nursing, and being tube fed. Dr. V came in and was thrilled with her gain. She charted it out for me (below) and said it was an awesome gain overall! Yay!! Five grams per day is maintenance and ten grams per day is weight gain. She was hoping/expecting Hannah G to gain ten grams per day....Hannah is really gaining eighteen grams per day on average!!! WooHoo!!! It made me feel so much better to see it all plotted out. Plus, not only is she gaining, but I'll explain the charts below which were all very encouraging.

Because she has gained weight, we are also going to increase her Pediasure feedings overnight. Now she will be getting 12 ounces over a ten hour period, which will continue to push her weight up, which in turn pushes her length up. Ultimately, she needs her length to be between 30-50th percentile and then her weight to match that somewhere on the chart. Baby steps - and we are getting there quicker than I prayed for!!

Miss Hannah G today - at almost fourteen months {in a few days!}.

The chart above is what Hannah had been doing. As you can see, she dropped drastically, then leveled out. And you are seeing correctly, at 12 months, she was below the number "12." Then, today, at almost 14 months, there was a huge uptake again!!

Above is Hannah's head circumference...from hospitalization on October 9 to today, November 13 (see the increase???).

This is Hannah's length - again, hospitalization to today...another increase!

One of the more exciting ones....Hannah's weight. See how much closer she's getting to the bottom of the chart?!?!?!!! We're almost at 3rd percentile!!! The first "X" is her birth weight percentile for comparison...that's the percentile mark we're shooting for to get her off the tube.

The best one by far....her weight to length comparison. She is now on the chart!! Which means that, proportionately, she is doing super!!! Finally they are matching up somewhere on a chart!!!!

Hannah's Update - We're Home!

Hannah is home! I thought I would recap our events of the last few days.

On Wednesday morning, Hannah and I got up bright and early and headed for Iowa City. Daddy followed a few hours later after he got Austin and Aidan off to school and the triplets to a wonderful friend of ours who volunteered to take them (on top of her own TWO two year olds!!).
We arrived and they were waiting for us. She got into her room and we met with her doctor shortly after admission. Hannah was not happy for the first little while as we waited for all the admission stuff to get done because she was feeling very cooped up. I didn't want her crawling around on the floor, so she was trapped between being held and staying in the crib - which did not make her happy. After everything was done, about two hours later, we got a tour of the unit and then Hannah was able to go to the playroom. She stayed in there a bit (she loved having free reign over the toys and not having to fight anyone off!) and then we took a few toys back to her room to play with. Then she was happier!

Wednesday was a very l-o-n-g day of a whole lot of nothing. Hannah's social worker (who was the person who was setting up home health care and equipment) came in for a few minutes to tell us she did not have time to meet with us that day, but would come on Thursday to chat. I was a little frustrated because I wanted to be sure that she would get it all set up. The dietitian came in and spoke with us for a long time in the afternoon. She was awesome and very helpful. She did finally give us an estimate of how long the feeding tube will have to be in place - at a minimum of 3-6 months and quite possibly longer. At least I have that in my head now and I know what is going on. Then we discussed how we wanted to do the feedings. We could either do three bolus feedings per night, which would involve getting up three times during the night or we could do a continuous feed all night long, which would involve continuous monitoring while in the hospital. After discussing it with the dietitian, we felt that the continuous feed would work better for our family as Hannah is finally sleeping through the night. That meant a room transfer for Hannah to a room equipped with monitoring. So after the dietitian left, our nurse came in and we moved to a different pod in the unit. Hannah enjoyed the ride in her crib through the halls!

Wednesday evening, we finally had some "action." They had decided to wait on all testing until Thursday (but did not tell us that) and decided not to place the NG tube until Wednesday night right before her feeding was to start (and, again, did not tell us that either!). I was terrified and they told me that I didn't have to stay in the room while they did it,but I knew that I was going to be learning how to do it the next day, so I insisted on staying in. Hannah did not have a nap all day Wednesday, got up terribly early for her, and then finally fell asleep about 8:45. They were supposed to place the tube at 7, but that did not happen. Instead, they woke her up at 9:15 to do it. I was frustrated at that point, but there was very little I could do. It took her a couple of hours to settle down after that, but then she was happy again and she finally went down for the night at 11:45.

Every hour and a half after that, a nurse came in to check her blood pressure. Also happening about every 15 minutes, the alarms on her would start going off because the rhythm of her breathing or pulse would change. Between the shrieking alarms and blood pressure checks, Hannah and I did not get hardly any sleep on Wednesday night.

Hannah was a happy camper in the morning, though! Dr. V said that she would rewrite orders so that her blood pressure would NOT be taken except once in the morning, so that she could get more sleep. Then, around 11:30 am, Hannah's resident came in and told us he had good news for us...Hannah had tolerated her feed well and we were being discharged! What?!?!! I had not been taught anything, we had not seen the social worker, no testing was done, and I had only seen the NG tube placed once, for the very first time, in a high stress situation. I was very angry and spoke with our nurse and it turned out that the resident went over Dr. V's head and was discharging without her approval. Hannah had a full day of tests scheduled, plus teaching for me was scheduled and we were to meet with the social worker. We were not going anywhere.

She had her blood drawn for a myriad of tests right before lunch time. They blew the vein the first time and got it on the second time, so she had minimal screaming.

Daddy arrived and helped her enjoy her lunch and then Grandpa Kenny and Aunt Sue arrived for a visit. Unfortunately, that was cut short due to more testing, but she did love seeing them while she was able to!


We finally went to do the sweat test for Cystic Fibrosis about 1:30 Thursday afternoon. Hannah had not slept in many, many hours and was very cranky and irritable. She did not want to be messed with, all she really wanted to do was to go to sleep and cuddle; so you can imagine how the testing went. It was not pleasant at all. It didn't work the first time on the legs, but it did on her arm. Because it didn't work, it took longer than expected and we ended up not being done for a few hours. But we did get fantastic news - she does NOT have Cystic Fibrosis!!!!!

I was taught how to place the tube on Thursday evening. The nurse talked me through it early on and that part wasn't too bad. Then we decided to do it about an hour after she ate, so her food had time to settle and she didn't vomit the tube back up (which can apparently happen or so we've been told). I was terrified, so sent out an SOS for my prayer warriors to pray and I prayed hard for a bit. Then it was time and it went so smoothly I was absolutely amazed. I could feel the presence of God and I know I wasn't the one to place that tube, but God used my hands to do it. I also felt totally at peace and it went amazingly well! I got it on the second try and altogether with both tries, it still only took about 3-4 minutes.

On Wednesday night, my cousins Madeline and Gina came to visit us and break up our evening a bit...that was awesome. On Thursday night, Gina was kind enough to bring me dinner. It was fabulous to not have to eat hospital food or even leave Hannah's room for the few minutes to go get it! (I had been making mad dashes for all of my meals because I really didn't want to leave my baby!)

Hannah was so over-tired by Thursday evening (even though she did end up getting about a 30 minute nap) that she was just hyper by the time I tried to get her down. She fell asleep about 8:30 or so, but then we had to hook up all her monitors and the feeding tube, which woke her back up around 9:15. She was then UP. She did not settle back down until 12:30 am, when she finally just collapsed in exhaustion. However, she did sleep all night long and did not wake up again until the resident loudly entered the room and woke her at 8 am.

Friday morning, we were VERY ready to get out of the hospital and go home. Hannah and I both missed our boys dearly and just wanted to get back into a "normal" routine. We had some bumps in the road trying to get out the door (the social worker never did come to talk to me the entire time I was there and never even connected with our home health people until the very last minute), but we finally left about 11:30 am.
{Hannah is so happy to go home, she's even telling her baby about it!}
We arrived home in time to see the tail end of the homecoming parade and I was able to pick up Austin and Aidan. They were both thrilled to see Hannah and I! Nathanial and Ethan were also thrilled when they got up from their naps, but I got a {very} chilly reception from Noah. I asked him for a kiss and a hug and he ignored me for a long time. Then finally he said "NO!" when I asked and I knew at least he was speaking to me again! He finally did forgive me for being gone and we are now back to normal!

Hannah has pulled her tube three times - twice on purpose and once by accident. The first time I waited for the home health nurse to come to re-place it since she was on her way anyway. That way, Steve could see what I needed him to do and I didn't have to walk him through it all, either. It went very well and I placed it quickly then also. Since then, Steve and I have become quite the little team and we're near-experts in placing it. Not that I ever wanted to be, but I am so thankful for God steadying my nerves and helping me to do something that could have been a very difficult thing to do! Hannah has been sleeping a bit better since returning home. The first night was a bit rougher and last night she was closer to her more routine bedtime. Things are settling and going well!

Hannah has already gained another pound and a half - just since the tube was placed!! They told us that kind of gain will probably not continue, but it is awesome to see an immediate pick-up in weight! She is very happy and looks better than she has in a while. She will go in for weekly weight checks at her doctor here and then go in monthly to Dr. V in Iowa City.

Thank you for all of the prayers...it helped immensely and we really appreciated it!!!

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.

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.