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 and Austin and H1N1

Sometimes it seems life gets going and I forget to update...or I can't find two minutes in which to do an update. Last week was a crazy busy week.

Hannah has had her NG tube for over a week now and she is starting to adjust to it. She pulls it regularly at night, but she leaves it be during the day. She no longer has to use her arm restraints during the day and that is a huge relief. We got a lot of looks over that one, but it was the only way to keep the tube in! She started getting smart at night and she will wait until I am out of the room for a while and then remove her arm restraints. She does still wear them at night because otherwise she will pull the tube out. Most of the time she leaves the tube be, even without restraints on, during the night, but if she wakes up in the morning and is left alone, she will pull it. And she's getting very quiet in the morning, so you are never quite sure when she's awake and when she's asleep. My solution to that has been to get her up and out of her room as soon as I wake up. A few nights ago, she got very smart and we still can't figure out how she did it. She pulled her tube out - with both arm restraints on. I have no idea how she managed, but she did. The next night, she pulled it out, with restraints on, at the beginning of her feed. I went in like I usually do and checked her three times. I just checked to be sure it was still attached to her cheek, because she was kind of laying on it. She pulled it and I had no idea. I even went in and checked it again, plus then checked it when I disconnected everything and flushed her line. Steve woke up and went in to get her and her hair was matted to her head and her jammies and sheets were full of Pediasure. I now turn her over when I go in to check on her to be sure it is still in place.

Other than the fights over leaving her tube in place at night, she's doing pretty well. The triplets have not once attempted to pull it out. I am so pleased with that! Noah was checking her out the very first day and I told him "No, that makes owies for Hannah" and he has since left her completely alone. He even told Nathanial "no...owies!" one day just for looking at Hannah! It is so nice to not have that worry!

Austin was home all last week with influenza A. He said he was sick on Monday, but he's been having a lot of anxiety again lately so I assumed it was that sort of sick. I left him be, but he didn't really perk right back up around 9 like he usually does. Monday night, he started sounding awful and went to bed by 6:30! Tuesday he woke up and was just miserable and I knew he couldn't go to school again. So I took him in to the doctor, figuring it was just a cold but I knew we needed an excuse slip if he was going to miss two days. And it wasn't...he tested positive for Influenza A. We've been told that they do not run the H1N1 test because it is so very expensive but that it is too early for the seasonal flu, so we can be relatively positive he had H1N1. He was immediately put on Tamaflu, as was the rest of the family so that we could avoid anyone else getting it.

On Wednesday, I took him back in because he was having a lot of trouble breathing and said it felt like someone was sitting on his chest. The doctor he saw then said to just increase his inhaler use and add Mucinex. I was a little frustrated because he didn't believe me at first when I told him he had tested positive for the flu; then he suddenly thought maybe he should be tested for the flu; then after about 10 minutes he finally understood and looked in his chart. He didn't understand my concerns about his breathing, either, but Austin has asthma, a heart condition, and a neaurological disorder...all of which put him at a much greater risk for complications from the flu. Very frustrating. He did seem a bit perkier for about an hour that afternoon. Thursday he had a few hours of perky-ness and he was back to fighting with me by Friday afternoon. He probably could have gone back on Friday, but I wasn't sure and just figured better to be safe than sorry. Today is his first full day back and he had a ton of homework over the weekend to catch up on. Thankfully, he's a strong student and in some very un-challenging classes so he won't take much to keep up.

Noah, Aidan, Hannah, and I all got colds out of the deal, but none of us came near what Austin had and I think Tamaflu helped keep it not so bad for us! Prayerfully, we will now have healthy winter season!

Prayers for Hannah

Hannah goes in tomorrow for her NG (feeding) tube to be placed and for testing. She will be in Iowa City. We would appreciate the following prayers:

• I quickly learn how to reinsert the tube
• the testing will reveal something as a reason for being so small
• Peace for me while learning everything
• safe travels for both Steve and I
• the triplets do well while staying with a very dear friend
• Austin and Aidan do well while staying with another very dear friend
• the home health nurse will be paid for by our insurance
• Pediasure will be paid for by our insurance
• Everyone adjusts quickly to Hannah's NG tube (and leaves it be!!!!)
• Hannah grows quickly and can have it removed quickly

I am trusting God to get us through this - and I know He will. It's been a very difficult and stressful few weeks leading up to this. Our entire family greatly appreciates all prayers said on our behalf. Thank you so much for praying for us.

I will be unable to update the blog while we are there, but I will be updating my facebook and tweets (tweets are under the pictures in the right sidebar under "glimpses into life" or you can follow at twitter.com/calondercrew).

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight.

~Proverbs 3:5-6

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.