Friday, October 29, 2010

Primary Children's Medical Center

Lily made it safely to PCMC NICU yesterday.
Sorry for the lack of updates! I was just too tired to blog last night.
Right after my last post we got a call from the doctor telling us Lily had developed some complications. She had spiked a little fever which led them to do a work up, leading to the discovery of aspiration pneumonia. It appeared that she had been refluxing or "swallowing" some of her food into her lungs and her right lung wasn't looking good. She was moved back to the "little room" of the NICU--the most acute and sick babies--and they had to restart her IV and take her off feedings.
We sent the kids with grandma and went up there, where she looked surprisingly well and wasn't laboring to breath which was encouraging. The last picture above is from that night.
The only good thing about the pneumonia is it seemed to speed up the transfer to PCMC. She was picked up yesterday and I got to ride along with her (in the front) so we had our first ambulance ride together.
Once at PCMC things got started right away. She had a very long and detailed echocardiogram and afterwards Dr. Day came up to talk to me. He was encouraged by the results and felt like her pulmonary hypertension is not as bad as we originally thought and he pulled her off the medication they had started for it. (In case you are wondering, it's Viagra, but they call it "Revatio" when used for this purpose.) He felt like if the PDA closes on it's own we should be good to go, and if not, we can discussing closing it for her.
After our talk he walked me to down to Imaging and stayed to watch her Upper GI study. She wouldn't take a bottle at all so they were unable to see if she is aspirating directly into her lung, but they did shoot some dye into her tummy which came right back up. She hasn't ever really spit up which means whenever that happens it just goes into her lungs. Great. Surgery is coming up to consult on her today about a Nissen and G-Tube placement, which Charlotte had as well but at age 2.
In the end it was an encouraging day. We have gone from saying "no intubation" to discussing surgery and obviously intubation for those purposes. We will reevaluate at each step and make sure we are still doing what is best for Lily. Thus far the doctors think she could go home on oxygen and with a g-tube and live a happy life, and we would get the chance to get to know her. If that changes we will make other decisions, with her help of course.
This morning her oxygen need has gone down a little and she is resting after her wild day yesterday. I am spending time at home to let my other girls rest and enjoy some quiet time at home with mom. This afternoon they get to Trick or Treat at Dad's work and Aunt Alex's work, so that will be fun. We will get up to visit Lily after that and see what the doctors are saying today.
Thank you for all your thoughts and prayers. We feel so supported through this rough time and know we aren't alone!


Shannon said...

I am so glad that the transfer went well yesterday! You have been on our minds every second of the day. We love you!

Lacey said...

Lookin good baby girl! So happy about the PH! She's done so great so far that I bet she will extubate fine with a g-tube, nissen!

TMI Tara said...

I'm encouraged to hear that Lily is at PCMC getting the best possible care and that her trip was made safely. I'm SO glad her oxygen is down and that even though it's a bummer that she's aspirating, at least you know what steps to take to fix it. I continue to pray that you can manage all of your motherly duties and that sweet Lily can be HOME with her family soon!

Ann said...

God bless you & your beautiful family - keeping you guys in my prayers - it sounds like you have an exceptional team surrounding you. G tubes & nissens can be great blessings - I am routing for little Lilly! She is precious :) Ann

ANewKindOfPerfect said...

It sounds like you have a great plan in place! I hope they can get her surgeries scheduled and done soon that she can be on the road to recovery and HOME! :)

The Snell Family said...

It is so nice to hear the docs talking and planning. Glad she is at PCMC and with Dr Null in the NICU, he is one wonderful doc. Glad Dr. Day has been there for youb too. Praying for you all. This is one compatible life!!!!

Anonymous said...

Thinking of you all this weekend, and glad you safely made the shift to PCMC.

Love to all,

Carolyn H.

Katie said...

She is so adorable! I love the profile pictures too. Those always seem to be my favorites!