Monday, August 22, 2016

Mallory May's Story Part 2

So it has been really hard to type up the rest of Mallory's Story.  I am not sure anyone is reading this but I have to make log of her story so I can 1. remember it and 2. so that Tala and the rest of the kids will remember her.

After getting to see Mallory I was amazed at how small she was and how sick she looked.  I cried a lot and I mean a lot.  Good thing Lance was able to stray the first few weeks with me so that I could get accustom to the NICU and heal a little. 

Since Mallory was so sick I wasn't able to hold her. Lance and I would stay in her room and talk to her and tell her about her brother and sisters she had waiting for her at home. Lance would sing to her in Spanish. We were able to help change her diaper and oral care.  Oral care consisted of taking a sponge on a stick ( it looked like and sucker) and dipping it in water and swishing it around in her mouth.  It wasn't very easy due to the face Mallory was intubated ( had a breathing tube down her throat). Diaper changing consisted of lifting her little body up and removing the dirty diaper and quickly putting a clean on under her. Her little tummy was so large with excess fluid and her skin was so sensitive that we couldn't close the diaper. 

When Mallory was 6days old we finally got a diagnosis.  She had "Neonatal  Hemochromatosis" (try saying that 3 times fast).  What does that mean?  Well in the womb her liver developed but never functioned properly at all.  She was retaining fluid due to her liver not working.  She was immediately put on medication to help her liver function.  The scariest part was that they had to preform a full blood exchange.  Yes you read that right.  They Dr. and a bunch of nurses had to take some of her blood out through one IV and put the new blood in through another IV.  Her Vitals had to be checked every few minutes.  Everything had to be sterile so I sat/ reclined in a chair in her room behind a curtain wearing a gown and mask. I tried to sleep but wasn't as successful as I had hoped.  The Dr. would ask every once in a while how I was doing.  I was so nerve racking to sit back and let them work on my sweet baby and not be able to do anything for her but pray and pray.

After being in the NICU a month I started to really get to know the Dr.'s and Nurses really well. I was determined to make my stay there as positive as I could.  Having a baby in the NICU isn't easy and can be really depressing.  So I had to find the silver lining in every day.  Not as easy as it sounds but I fell I was successful. 

Week after week and day after day Mallory was improving.   Don't get me wrong we had our set backs but all in all she was improving. A few of her set backs were: getting blood clot in her left leg that surfaced and we were worried that she would loose her leg, for a long time she was struggling with breathing and we kept having to turn up her oxygen then she would do really good and we would turn it down and then up again.  Finally she want onto a new machine and she didn't like it so we had to go back the stronger machine.

Just before Christmas I was talking to one of the Dr.'s and said something along the lines of When do I get to hold her?  The Dr. was floored that we hadn't tried yet.  She put her foot down and said tomorrow night you will hold no matter what anyone else says.  I had been turned down many times due to the nurses be really nervous with all the Machines and IV's she was on.  The next night I brought my Pajamas and after we did all her cares (diaper change, oral care, weighing and so much more) they arranged her room with a really comfy chair, pillows, blankets and lots of tape.  They called in Repertory nurses, Dr.'s and nurses to help.  It was a very emotional experience but the best feeling in the world.  Mallory was so tinny and I was so scared I would drop her.  Oh and for the tape they taped all her tubes to me so they wouldn't get pulled out.  A few days after holding her one of the Repertory nurses informed me that  normally when a baby in on the respirator they only reason the allow parents to hold is because the baby is dying. I was grateful she told me because there were many times  we had a heart to heart with the Dr.'s that she may not make it though the night and what our end of life plan was for Mallory.  All I could say is I just want to hold her, just let me hold her.  After holding Mallory for the first time she was able to get off the respirator and  onto a better breathing machine.  Then after Christmas the Dr.'s were able to take the breathing tube out of her mouth and put the breathing tube in her nose.  What a blessing.

In January Mallory was strong enough to go down stairs to have surgery to close her PDA.  When we are in the womb to oxygenate our lungs there is a little valve in our hearts that does that.  Once we are born the valve closes on its own.  In most preemies it doesn't close on its own so a surgeon goes in under their left armpit and  staples it shut.  Mallory had to be intubated again and I was so scared that she would struggle getting extubated.  This was not the case, within a few days she was on the nose cannula and was able to get her Oxygen turned down at a faster rate.  (this was one of the reasons Mallory needed the surgery). We were told Mallory was doing so well that I would be able to take her home at the beginning of February.  The best news ever. 


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