Day of Lif e #31 -Happy Birthday Maddie!

Madeline is 1 mos. old today- Happy Birthday! Pray to God that she will be spending her next month's birthday at home with mom and dad!

Took this pic this morning- she was a little drowsy ...

Lots of info today...Madeline's Creatinine went down to 4.12 A little down from yesterday. So that's good. The BUN is the same as yesterday (25) The Doctor told us today he wants to consult with nephrology regarding her plan over the next week. Although they decreased her blood pressure medication yesterday they had to go back up again in the evening. However, there is discussion about whether to keep her on this med or to move her to a different med. Apparently most babies stay on it about 11 days, she is past that so we need to figure out if she can go on something else. This medication may not be effective/necessary anymore. Also it goes to her through the broviac tube and obviously it would be ideal for her to be on a medication she could take orally, that way it wouldn't be an issue when she goes home. She will need to be on a medication for blood pressure most likely when she comes home but it needs to be something that does not go through a line. After talking to the nurse I understand that where she is at right now it would be sort of like giving her tylenol instead of tylenol with codine. We will see what Nephrology says.

We also want to get her off her cathater in the next few days- another thing the Doctor wants to see what Neprology says.


The Dr. says she is somewhat on a standstill with her kidney progress as BUN remains the same and Creatinine went up ,then down tiny bit. then up a tiny bit, now down a tiny bit again today. So again, this is why he wants to consult nephrology to see what he is thinking about for plans for the next few days/week (s). Hoping that nephrology will be a bit more optimistic than the rest of the team sounds today.

The Dr. talked about feeding options as well. Sometimes babies who aren't taking food from a bottle/breast will be put on a G tube if that is the only thing they need to go home. A g tube goes into their belly. However the dr. does not see this as ideal because there's always a small possibility she could have to go on dialysis and if she does that it wouldn't be compatible for her to have G tube and dialysis. So if she does not progress like she needs to on taking her feeds, it's a possibility that she could go home with the ng tube she has now and we continue feeding her that way. It would mean they would have to teach us how to put an ng tube in and how to give her the feeds through the ng tube. They don't like doing that though because there's a chance she could aspirate (where food 'goes down the wrong tube'). So let's pray Madeline progresses on her feeds and we don't need to do that!!

All of this though is still weeks away- they told me that they want to talk about options for her but remind us that she is not going home tomorrow or next week or anything but that they want us to know her options. A lot of it is overwhelming for us to think about right now and giving me a headache. I am hoping that thinking about those feeding options won't have to be a decision we have to make. Hoping she makes more progress and fast!

She did take 20 cc's from the bottle today -yay- They said that she usually has good mornings though so we shouldn't exactly think that that means she's making leaps and bounds.. But i am happy and think it is a good sign. That has been another issue- trying to figure out when to feed her bottle, bottle vs breast etc. Because if she is sleeping /resting we don't want to wake her to feed her even if it is her time to be fed because she might not respond well because she will be tired/cranky. If it is time for her feed and sleeping they will just give it to her through the NG. But when she is up we can give her bottle/breast. I can't decide, because at least with a bottle we can measure how much progress she is making whereas with a breast we can't, also she seems to be making more progress that way than a breast. But I still want to breast feed her it is important to me and if we focus solely on bottle then maybe she will never take a breast? It is very confusing and basically they have told us that it is our choice of what to do.

Pray for guidance in all of these areas and for more healing for Maddie. There's a lot to process today.


Adalee- Latched right on to mom last night at breast feeding! She fed for about two minutes- which is pretty good for her! Good Job Adalee-I think there were some other things mom and dad mentioned prayers for but now I forget because I was so excited about the breast feeding! Overall she still needs lots of prayers so pray she can keep going up on feedings and that her gut would heal and that she could get home and spend some time with mom and dad!

Everett- Have not seen his parents but his mom was so sweet and knit Madeline a headband and left it for us in her room- how sweet. It is a little big but when it fits we will take pic to show for sure! Please keep praying for healing for Everett and that the Dr. would know how to help him!!


Thanks all and God Bless!