9 Mos and 1 day old- Back to the Basics

Good Morning Everyone
Will  try to remember where we left off on Monday until now...

After someone from the PICU came up thursday they STILL couldn't a line in.So a discussion was had about putting a line in her head so that they could give her sedation through the iv in her head -so that they could give her a femmeral line (which is semi permanent but would hold her over until we could get the broviac). However. in the end they decided to just readmit her to the PICU for a little bit until they could get things in order.

So by 8pm they decided to give her a medicine that is given through the nose..a lot like valium that makes her tired and loopy which would help her to lay still which helps them put the femmeral line in (this goes in her groin)- This way she could have blood draws done without poking her and giving her much needed iv fluids.

They also did a number of things to bring her potassium down which had been really high and runs the risk of causing heart arrythmias. Luckily it did not mess with her heart and they were able to get it back down.

Late tuesday afternoon she left the PICU and came back to the nephrology floor. And since then things are getting back to normal. She has been scheduled for surgery on Friday for the Broviac line  which is a central line that she can keep even after the hospital for blood draws and iv fluids if needed.

Other than that we are back at baseline in terms of why we even came to the hospital (3 weeks ago now) in the first place. She started her g tube feeds at 20ml/hr every hr on tuesday afternoon and should be moving up to 30 today. We want to make sure she can tolerate the feeds as well as gain weight. Because she was not getting her full feeds they decided to give her some tpn fluid (nutrition) to supplement the calories she is not getting from her gtube feeds. So she has been gaining well. 3 weeks ago she weighed slightly over 14lb and now she weighs around 16lbs.

However her diarrhea continues -the volume is less but she is having diarrhea diapers anywhere from 4-9 times a day. This morning she also started puking again (just an ounce) but we are not sure if this is because she is on partial feeds and that perhaps if she was on full feeds she would have more puking and more diarrhea. Only time will tell.

It looks like Madeline will be spending her first Easter in the hospital which is disappointing but we have to focus on the reason for it and that it is necessary to make sure she is better

I wanted to also let everyone know that Baby Adalee is back in the hospital (she was readmitted last night)- We do not know the details only that she was readmitted. Please please keep her and her family in your thoughts and prayers .Adalee is truly a miracle and we know that God has a special plan for her and her family. Pray for healing for whatever is ailing her as well as comfort and strength for her parents. Adalee has been in and out of the hospital more times than Madeline and we can imagine how wearing it must be for the whole family. We will keep you updated as we know more.

Again thanks to everyone who has been supportive in this time of great stress. All the food! Visits! and comforting words and help in keeping up with everything. I know people have been over our house and cleaned it for us, watched the plants, picked up mail. mowed our lawn etc. These things give us so much peace of mind!! THANK YOU!!!! God has blessed us with wonderful wonderful supports. We wish there was more we can do than to say thank you but we mean it from the bottom of our hearts!

Praise God for his constant watch and healing .