Day of Life #100- 100 days of (Baby) Sommer

Good Evening!

Quick update- Madeline had a last minute appt with the nephrologist because of some concerns we had about her eating/weight gain/med taking. We have been having problems with getting her to take her meds lately - we mix them with her milk because she does not like the taste but sometimes she won't take her bottle or she falls asleep and wont wake up for her meds and therefore does not get them.

Also - the nephrologist's office would like to see her drinking around 28 oz a day- We didn't think Madeline was that far off but when we actually documented her intake-she was only taking around 16oz.

When the nurse came the other day she weighed Madeline and she was still 11lbs 6 oz- which it seems like she has been for several weeks now.

So with all these concerns an appt was made with nephrology-

Honestly there was a great deal of stress around this appointment as there was worry if she is growing enough-has it slowed?Does this mean she is on dialysis soon? etc-Also feeling like maybe we had not done a good enough job making sure she had gotten her full feedings..etc.. Needless to say I was so flabbergasted I forgot my wallet at home and the paperwork I needed to bring to the office!

Anyways-

At the office they weighed her again (11lbs 9.5 oz yay!) and took her measurements (23in long), and took her blood pressure. We discussed her latest issues and the doctor and nurse practitioner explained that they feel she is still doing ok weight wise. She is gaining 11grams a day and the goal is for her to gain 25 grams a day. So not where she should be - but not losing either. We discussed ways for her to increase her intake (including waking her up at night- not the most fun thing in the world but we will do what we have to).

We also attempted to give her meds without mixing them in milk while at the office. She was not having it no matter how many tricks we tried. The doctor and nurse practitioner are both advocating for a GTUBE for Madeline. This has been discussed before (prior to leaving the nicu) but at the time was not needed. The reason to do the GTUBE would be to make SURE she gets her meds (by inserting them in the GTUBE) it would also keep the yucky taste of her meds separate from the good tasting milk . The reason that is a good thing is because many kids began developing an oral aversion (even to good tasting things) because they are afraid of tasting unsavory bits (like the medicine). We do not want her to refuse to eat regular food as she gets older. That is not the main reason for this but it is one positive to doing the GTUBE. Also- if we cannot get her to take the milk she needs -we can put the remainder in the GTUBE. They tell us that it has helped many kids gain weight/grow. Also, it is likely she will need a GTUBE regardless following her kidney transplant because she will be given an adult kidney which requires more fluid intake than any normal baby would even want. This is a surgery and the Dr that did the surgery for placing her broviac line would be placing the GTUBE as well.

Obviously we want to discuss and think about this some more but we do believe there is merit to what they are saying- Feeding has truly become a daily battle that we are struggling to win- It would be a relief to know she is getting the meds/nutrition she needs. The downside is that it would be another 'thing'she has going on and we would prefer her to not have to use it at all and just be 'normal' - but I think we are realizing more that Madeline is not going to be a 'normal' kid and that we have to start getting used to doing some 'abnormal' things with her.

The good news is that the doctor and nurse practitioner told us that we are not doing anything wrong and that they feel confident we are doing the best we can- which was reassuring. They said that Madeline is actual Atypical compared to most babies who have been through what she has. They told us that for as much kidney damage that she has- her labs are maintaining well as is her blood pressure for now- and that development wise she is doing great! That is a relief because we were beginning to think based on the descriptions from the PT and OT that maybe she was a bit behind. The nephrology staff insist that even though YES she is behind- she is doing way better than what they expected her to be like at this point. YAY MADDIE! Looks like she is really living up to her name 'Miracle Maddie' - We know that it is only through prayers and God's will that she has come so far.

So at the end of the day -things are not PERFECT- but are they ever really for anyone/any situation? We have to count our blessings and do the best we can for our baby as she continues to work through these things.

Thanks for Everything!