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.