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.