Happy Wednesday

Yesterday was a very rough day for me and Rick.  Maci had to get a NG tube (tube from her nose into her stomach) for her feedings.  She began to consistently not finish her bottles or it would take much longer than 20 minutes.  Once she had 3 unfinished bottles in a row, she got the NG tube.  When a baby eats, after 20 minutes of eating, they begin burning calories they need to retain.  ESPECIALLY in Maci's situation, she needs to conserve as many calories as she can since it is very important for her to grow and gain weight.
Moo was also spitting/throwing up after she ate but was not acting as if she was experiencing any tummy discomfort.    The doctor and nurse practitioner said it was likely just stomach upset and that some of the meds Maci takes can bother your stomach and she was just probably experiencing a typical upset stomach from the meds.  After 3 clothing changes, we let her wear a white hospital tshirt....but I gave her a headband so she could feel pretty.   

Today was a better day.  I guess I was just due for a break down last night and boy did I have one.  Maci had a nurse last night that was taking care of her for the first time and bless her heart she may have thought I was coo-coo but sure didn't let on if that's what she thought.  She was very kind and understanding.

Maci did take one entire bottle by mouth today....all 45 mL's down the hatch in 24 minutes.  GO MY BABY!  She still eats and wants to eat so there is no problem there.  It's just that she gets tired or is too sleepy.  :(  Trying to make her eat is not a good idea either because infants can create an aversion to eating entirely.  Even though she isn't taking every bottle completely by mouth, she will some of it and that is a good thing.  The kidney docs say that often babies with kidney disease will not eat at all.  Dr. Eison said today that he was pretty pleased with her progress and how she's doing....so if he's happy, Mommy's happy!
They also went up on the volume of fluid going into her abdomen to clean the blood.  She is at 50 mLs (up from 45) and tolerating it well.  She must be up to 100 mLs for the home machine so we are halfway to home.  I just pray she continues to do well and we are taking her home before we know it. 

I really couldn't ask for a better group of people to have played a role in taking care of Maci or is continuing to care for her now.  The people at Methodist Germantown were fabulous and there are several people I miss a lot.  Those here at LeBonheur really make you feel like your baby is their top priority.  I have encountered many physicians over my years that may have lacked a bedside manner or did not have a spectacular personality.  Maci's two nephrologist and a couple of the neonatologists here really do seem like they go above and beyond their average "doctorly" duties.  I am VERY thankful for that. 

I still continue to be thankful, every single day, for those who have and continue to express concerns and include Maci and my family in their prayers.  I remained overwhelmed and often cry over the love that has been shown for my daughter, who amazes me every day.  I look at that little girl and to know that she is MINE and Rick's and dependent on US; it is an overpowering feeling at times.  God chose us to take care of this baby girl with renal failure/kidney disease.  God is confident enough in us and with his grace, I will stay confident in myself and Rick and our capabilities to provide for our child in every way possible. 

Here are a few faces we see on a regular basis.  They help take care of Maci.

 Dr. Delos Santos - Nephrologist (Kidney Doc)

 Dr. Eison - Nephrologist

 Dr. Afshan - She works with Dr. Delos Santos.  She is doing her fellowship in Pediatric Nephrology

 Dr. Joi Goodwin-Samson - Neonatologist

  Dr. ElAbiad - Neonatologist