Day of Life #36

It has been a long and confusing morning.

Madeline went for her ultrasound this morning. Initially the nurse told us that the technician said her kidneys looked a little hard and that she had Pyloric Stenosis but that we would have to get an official report from the dr. A well, that she was diagnosed with pyloric stenosis at 1 wk old when she had her upper GI but they wanted to make sure because it is typically not diagnosed in babies until they are 3-4 wks old. Pyloric Stenosis is the narrowing of the upper stomach making it difficult for food to pass to the small intestine. However, when the dr. read the results this afternoon he told us that things looked fine- that her kidney's were the same size, and that there was no blood clots, her echogenicity looks fine (see link for explanation i don't know how to explain what that is). When we asked about the hardness of the kidneys that the technician mentioned the Dr. told us that things have not changed since 7/29 when she had her last ultrasound. So we took that to mean that they knew they were a little hard but that nothing has changed since then and it is ok? He said that things looked positive.

When the nurse read us the results of the ultrasound regarding the pyloric stenosis she said that now it reads that she does not have pyloric stenosis but there is delayed emptying of food into the small intestine- which would explain her throwing up/higher residuals. She said that this was ok though.

At our family meeting we talked about what will need to happen for her to go home. The Nephrologist explained that while she has made some progress in healing her kidneys, she has not progressed how he was hoping. He told us that typically within 8 weeks of kidney problems starting for babies like her they know for sure if the kidneys will fully recover or not. In her case she is 4 weeks in and while her urine output is good and in general she is balancing her electrolytes, the kidney is not processing waste like it should be (i think that is what he said)- and that the creatinine/BUN has not gone down as he had hoped it would. Progress has been minimal in this area. Also, as time goes by, her chances of her kidneys fully recovering becomes smaller and smaller. If they don't recover it could mean dialysis/and or transplant. He did say that she could go home while she is recovering- he said that there have been babies that have gone home even though their createnine is not at optimal level (which is .2 for babies) - sometimes babies have gone home when their createnine was at 2..currently Madeline's is 3.71. He said that sometimes the babies are ok and recover and other times they could stay at 2 (or so) and then after 4 or 5 mos the createnine goes back up again and that they go back on dialysis, and are re admitted to the hospital. If this happens with madeline, she would be readmitted and they would teach us how to do dialysis and she would have to go home on dialysis. Typically the babies are on dialysis for 10-12 hrs a day if they do have to go back on. Once she goes home with the dialysis there may also be a home nurse in the evenings to help.

HOWEVER- this is not the only thing keeping her from going home, besides getting her createnine to a manageable level, her blood pressure must also be maintained solely by oral medication. Currently she is being weaned off her iv BP medication. They are trying to maintain her BP by two different blood pressure medications taken orally so we will see how that goes.

ALSO -she has to be able to grow. We have not been able to accurately monitor her growth because she had so much fluid on her from the infiltrated line. Today is the first day she is pretty much at her birth weight. From here on out she should be gaining weight (caloric weight-like from eating not from any excess fluid) at a certain rate (no we don't remember exactly how much) each day.

AS WELL- she has to be taking her full feeds (around 75 or 80 cc's) by bottle or breast. It is hard to tell how she is doing because sometimes she sleeps through her feeding and they give it to her down the NG tube through her nose but for the most part we believe she is improving. She has been taking 50 cc's here and there- sometimes 20 or 25 or 30 cc's- I feel most positive about this area of functioning.

So to summarize: Madeline has to be able to maintain her blood pressure by oral medication, grow (in terms of caloric weight), take all her feeds (75-80 cc's every 3 hrs), and her createnine has to go down to a significant amount. The Doctors feel we are still going to be here another 3-4 weeks from today. At this point all the hypothetical's we mentioned about her kidney recovery are still hypothetical. It has been very overwhelming today and not exactly the news we were hoping to hear.

Still trusting in God know that he will take care/provide/give us guidance.

Update on Adalee- Did i mention she is taking 25cc's every feed? yay! Mom and Dad ask for prayers for her gut to still heal itself. They are taking her off regalin which i guess was a medicine that helped her gut motility.So that is good! She needs to gain weight to go home! Right now she is 1400 grams and she should be about 1800 to go home but they may let her go home at 1700 grams. She is still on nasal canulator but may be able to go home with it- but let's pray that does not happen - let's pray she can get off of it. She will also probably be going home with an NG tube. Praise God for progress and pray for even more progress and get home !

Thanks all!