Day of life #147 - Almost 5 mos old!

Well Madeline had a big day today- 3 Dr appointments! I suppose that is why she fells asleep at 6 pm and is still not awake!

Well the first visit was with the Cardiologist- they did an echogram and an ekg- they said her heart looks pretty normal - she has the flap from birth still but that is something that 25% of all people have and that they will keep an eye on it- They said sometimes when there is high blood pressure there can be hardening of the blood vessels in the heart but that does not seem to be the case but they would like to keep an eye on it just in case. They also mentioned high blood pressure could affect your eyesight? Go figure - hopefully that won't be the case with Madeline. Anyways they want to check up with her in 6 mos.


Second stop was Neurology- they thought she was doing very well for everything she has been through! They said she is pretty much developmentally on par with other babies her age. They did notice with her reflex there was some rigidity (there's a fancier word for it but I can't remember what that is right now). They said that it could mean that there is some development delay with her brain but it could also be normal so who knows. Again they will keep an eye on it and see her in 4 mos.

Last stop nephrology -Last week her hemoglobin was very low and they were concerned about it- they told us if it weren't for her Ipogen shots she would probably need a blood transfusion. This week they tested her blood and  the hemoglobin was better- however her weight is an issue of concern this week- They said not only has she not gained but she has been losing. They said there are still things we can try - so for now we are going to increase her feeds to 120cc(ml)/every 4 hrs- and keep 28ml/per hr overnight. She has an appt with another dr. at the same office on thursday so they will weigh her again and see how she is doing. It is kind of depressing for us because it seems like there is always something else to be worried about- but the office said that she is actually doing amazing for the trauma she experienced.  They said that they actually had not expected her to do this well at this point - the nurse practitioner said that they expected her to be on dialysis by now but she is not. She said the fact that she is holding her head up and bringing her hands midline is awesome- and that she does not have a feeding aversion is great- she has been on the wrong side of the odds for everything but has done surprisingly well- I guess we take for granted the miracle she truly is -every negative thing feels like a huge blow to us but actually she has overcome so much so maybe we shouldn't get as upset about this stuff. It is just hard sometimes when we want so badly for things to be 'normal.' We did ask if when she becomes 20 lbs (which is when she is eligible for a transplant) if she is still functioning at her current levels would she need a kidney or would they opt to do a kidney transplant as soon as they were able and they said yes they would. I guess we just want more of an idea of time frame- but ultimately it is in God's time frame..


So the jist of it all is that given her experience she is doing exceptionally well but she does face daily challenges - and it is challenging for us but we have to be thankful for what we are given.We have to try not to be too bogged down by the little daily things and look at the big picture. We are lucky to be so blessed.

Thanks for listening and have a great night all!