Primary Children’s Hospital

Where do we start?  It has been a while since our last post.  It’s such an up and down ride, that it’s tough to know just what to post and when to do it.  You can tell by the title that some things have changed this week.

The week started with some good improvements.  Julia was able to oxygenate her blood better on her own, and increase her feeding amounts. They had to put in a jugular pic line that sounds pretty scary, but went in well and she was doing fine with it.  Erin was even able to hold her again for the second time.  An hour of pure bliss for her.  Julia’s lungs were still not looking very good, but she seemed stable and in a good place. 

Around Thursday morning things started to get out of balance. Her saturation levels (blood oxygen) started to swing around a bit.  They were trying to get her back in to a stable place, but different levels kept changing.  Nothing new here, but it was a step back from where she was just a day before.  On Friday we went up to see her after a ward dinner.  The doctor’s told us that her little heart was thickening and bigger due to all the hard work it was doing to pump her blood and deal with the pressures of the ventilator.  We left that night not feeling so good about her condition.  Erin headed up to the hospital Saturday morning and found that things were a bit worse.  Little Julia’s liver was about 2 to 3 times larger than it should be.  Basically her liver is struggling to do it’s job.  She also had not been urinating very much or had a bowel movement.  Again, more negative signs to cause concern.  I headed to the hospital to give Julia a blessing and be with them both.  Later Saturday night we got a call from the NICU again.  This time they informed us that her abdomen was expanded and they were concerned that she had a profusion in her intestines.( basically a hole, and possible intestine tissue damage)  They also felt that she needed some more help which could better be administered at Primary Children’s hospital.  Plus Primary Children’s surgeons would be in a better position to perform a surgery on her intestines if needed. 

So the decision was made to Life Flight Julia to Salt Lake City last night.  Erin and I headed down and were there when she arrived.  There was not much they could do last night, so we stayed at the hospital overnight to be there for her.  This morning the doctors and surgeons had discussed her situation and decided that for now, there was no need to do any surgery on her tummy, and that the inflammation may just be due to an infection rather than a hole in her intestine.  Finally some sort of good news, as her body probably couldn’t handle the surgery right now.   They are watching her closely to see what to do next.  They basically told us to go home and rest. (easier said than done )

She is basically a very sick premature baby.  She’s always been on the “critical” side, but now is even more critical.  I’m sure there is some fancy term for it. 

This is Erin speaking now.  Wow, this has been so hard!!!!  I suppose it is easier to type than talk right now.  Tears are at a constant “drippage”. In all seriousness things could really go either way right now.  And that’s what makes it so hard.  Becoming a mother has been one of the greatest gifts of my life.   I feel so privileged that my Heavenly Father has blessed  me with 5 beautiful amazing daughter’s.  Unfortunately Julia has been dealt a hard hand of cards to play.  She has been such an amazing little fighter so far!   My greatest comfort is my knowledge of my Heavenly Father’s plan.  Julia will always be ours.  Whether we get to raise her here in this life or the next.  She has so many family and friends to love her here on earth as well as in heaven.  Selfishly,  I would  prefer to raise her here.  I know Heavenly Father is capable of all things, as well as miracles.  Just her very life is a miracle.  I am so grateful for the privileged 4 and a half weeks that I have had her for already.  And if she chooses to stay longer I will be so much more joyful.  Medically she has many challenges, and many good things ( like her no bleeds in her brain, good skin, and just being so cute ).    I just don’t want her to have to suffer a life full of pain.  But we know miracles can happen.   We love you all so much, and are thankful for all of your prayers, love and support.  Thank you for everything.  We have faith in our Heavenly Father’s plan and give him our support in all the outcomes of this life.  I just hope I will be able to be worthy of the great blessings he’s given me.