New responsibilities

Avery has mentioned all week that she needs to post but she hasn't had time to eat or sleep, let alone post. We love having Bela home, but this time it has brought on an unknown world of worry and responsibilities. We have to administer Bela's anti-biotic three times a day and it usually takes 40-50 minutes depending on who is the administer:) We were told by one of our home health nurses the other day, "the doctors must have a lot of confidence in you guys, because in 17 years of nursing, I have never seen a family entrusted to administer the anti-biotics at home." We didn't completely understand the severity of our responsibilites until the nurse put it into perspective. Usually babies stay in the hospital the entire time they are on their antibiotics and for us that would have meant another six weeks. I would go to medical school tomorrow, if it meant we could have our Bela home with us. So that you understand a glimpse of the routine, at night, we usually start at 8:30 or whenever we can get Benson down. We start with the multi-vitamin, lasix, something else, and aspirin in the NG tube. Avery will laugh when she reads this in the morning, because I just do what I am told and really don't know the names of the stuff. After the meds, we get all of the fortified milk prepared for the entire night and set up the milk pump. I am sure there is a great name for the milk pump, what it is I am not aware. Then the feeds begin for the entire night. This can take anywhere from 15 to 30 minutes, again depending on who is doing it. We then will always prepare the anti-biotic after we get all the meds and feeds going, because setting up the anti-biotic pumps at 1:30 am is not fun. I am getting anxiety just thinking about the fact that tonight is my night to get up and do the meds which means I will be up from 1:30 to 2:30 administering and then again at 4:00 to add more milk to her pump. I sweat the entire time I administer the meds!

There is probably much more that goes on during the day that I don't know about and I will let Avery fill in the blanks at another time. Avery will attest that Bela absolutely loves her daddy. She will fuss with almost anyone but when daddy is holding her. When I am home I can hold her for hours at a time and I pretty much tear up every time I sit and stare in her eyes. She is so amazing and we are so lucky to have her.

She is still not gaining weight and that really worries us. The longest she can wait for the next surgery is four months from now and at the pace she is on, she will not be as big and strong as the doctors would like. I know Avery worries about Bela performing to the doctor's expectations and so far she is under performing. I don't let that bother me because Bela does fit within any medical senario or growth chart. I know that if the plan is for Bela to make it through the second surgery, it doesn't matter if she doesn't gain another ounce, because she will make it.

Sometimes it seems that life is pretty normal but it is because we have an incredible support system and there is no question we have been carried through this. The other day, we accidentally pull out the NG tube that runs through her nose to her stomach. We were stressed about how we would get it back in, and thought that we should call someone we know who is a nurse. The night passed so fast and before we knew it, it was time to start her feeds. It was too late to call someone so Avery said that I had to do it. We were shown one time how to insert it through her nose and then check for the placement in her stomach in the hospital but never expected to have to do it on our own. I was so nervous I thought I was going to throw up but knew that we had to get it in to start her feeds. I said a silent prayer and asked that I would be calm and it would go down the right tube and make it to her stomach. It was incredible how at that moment I was overcome with total silence and my hand stopped shaking so I could put it right in. When I thought about it later that night, I recalled feeling the prayers of everyone that prays for Bela and our family at that exact moment. Our burdens have been made light through all of this. Thank you for your constant prayers in our behalf. I spoke with someone the other day that I have done business with and he mentioned that he thought Bela was in the clear and wondered what the future looked like for her. I reaffirmed to him that Bela is definately not in the clear and that we have a major surgery to undergo in a few months. I only say this because Bela needs every prayer and even if you don't pray for yourself, we ask that you pray for Bela. I am amazed at how many hearts she has softened and how many pray in her behalf.

We thank you all with all our hearts.