Friday, January 22, 2010
Praise the Lord!!!
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!!