Rough Day

To say that today has been a rough day would be a bit of an understatement.

Jolene's first 48 hours or so were pretty darn good.  She was holding her own and her x-rays and sonograms all looked good.  No surprises.  Nothing more than what we were expecting.  Yesterday during the day the doctors were even contemplating a change from the oscillating ventilator to a regular ventilator (which is good!).  She looked pink and healthy and even tried to open her eyes when I was talking to her (they had her slightly sedated so she wouldn't pull all of her tubes out, which she tried to do almost as soon as they put them in).

Last night, however, Jolene showed us just how strong and feisty she is.  She was not happy about having all of those tubes hooked up to her.  She got too hot in the warmer.  She had a dirty diaper.  Etc, etc, etc.  I don't blame the poor thing...I would have been trying to scream too.  She tried to cry but can't due to the ventilator.  She was trying to move and was flailing her arms the best she could.  And she was trying to breath on her own, against her ventilator.  So, more meds were given to calm her down and make her comfortable.  Jason and I then went to get some rest shortly after midnight.

We went back up this morning after shift change to see our little girl, and the prognosis was not good.  The doctors and nurses were now prepping to put Jolene on ECMO - a huge step in the wrong direction as far as what we were hoping for.  The survival rate for babies who are sick enough to need ECMO is about 50%.  (And thank you Mr. Resident Doctor for giving us the straight facts, but you really need to work on your bedside manner!)...Anyway, her body was getting oxygen around where it needed to be, but not getting rid of the CO2 well enough.  They were now giving her steroids, morphine, stuff to increase her blood pressure, and a paralytic to keep her immobile.  She was just working too hard and it was going against her.  We were almost in shock...she was doing so good yesterday!  But the doctors reminded us that with her condition things can change in an instant.  There will be several ups and several downs.  They reminded us that she went the first two days without ECMO, which is impressive, and that she has several other good things going for her.

So, midday today Jolene had a surgery to be switched to VV ECMO, which is essentially a machine that is bypassing her lungs.  She now doesn't have to work so hard, and her heart and gas levels have stabilized.  The surgeons said she did very well during surgery and all of her vitals remained great on her own during the procedure (hooray!!).  But you should see this machine!!  It takes the blood out of her little bitty body through a cannula in her neck and then through a gigantic machine, where it is oxygenated, and then put back in so her heart can pump it to where it needs to go.  She has her regular bedside nurse and another specialist whose job is only to watch the ECMO machine.  Jolene now takes up half of her pod with all of her stuff (the NICU babies here are in "pods" of 4-8 babies per room).  It is so very intimidating, but fascinating at the same time.  It is such a marvel and a blessing that modern medicine has the capability to do something like this.

Since Jolene is now about as stable as she is going to get (since the machine is acting as her lungs), she has surgery scheduled for tomorrow morning to repair her hernia.  They will bring the operating room to her and put all of her organs back where they belong, then repair her diaphragm with Gortex.  Crazy!!!  After that we just wait for Jolene to heal.  We wait and see if her lungs will grow and expand and start to be able to do the job on their own.

These are scary, scary times and my eyes are blurry from crying today.  It was bad and good and crazy and mind boggling and just plain exhausting.  Please continue to pray for Jolene.  Pray that she can remain stable, that her surgery goes well, and that after her surgery she can then begin healing and growing and fighting like we have seen her want to do.  She is stubborn and strong and beautiful, this little girl.