Friday, February 17, 2012

The Roller Coaster Rolls On...

Let's start with the good news from today! Last night Elise's favorite nurse, Karrie, saw Elise open her eyes for the first time!! Of course she rushed to get the camera ready, but the little stinker would not open them again :) We came into the NICU today to a scrapbook page Karrie had made during the night. She left an opening for a picture in the future when she does pop those eyes open once again. How sweet. Thank you Miss Karrie!

Now for the roller coaster...yesterday, we celebrated Elise's graduation from the oscillator to the conventional ventilator. Unfortunately, around 2am last night, Elise was really struggling to get her CO2 out, so she went back to the oscillator. Not a huge step backwards-- we know she will graduate when she is ready, but it was still a bummer to see her go backwards. Once again, she is on the lowest settings for the oscillator and doing well today. The "non-medical" way I think of it is like this: a woman loses weight. Once she loses a little weight, she is no longer a size 10 (oscillator) but the size 8s are just too tight (conventional vent). So she needs a size ladies, how hard is it to find those odd sizes?! In due time...

Also during the afternoon, we got Elise's latest heart ultrasound results back. Over the past 2 days, the doctors have given her 3 doses of the medicine that would hopefully close her PDA. Unfortunately, her results today came back with the PDA still being moderate in size. Essentially, the medicine didn't do anything for the PDA. Dr. Whitman spoke to the other neonatologists and everyone agreed to try another 3 doses of the medicine before ruling out the medicine all together.

IF these next 3 doses do nothing to the PDA (and Elise is still showing no signs that it is bothering her), we will watch and wait. For how long? Who knows. However, the problem with not resolving the PDA is nutrition (everything in medicine seems to be a domino effect). Right now, Elise is getting TPN as her nutrition. The goal is to use TPN as a temporary fix until she is strong enough to start taking my milk. Without the PDA being small or closed, we cannot give her any milk. The longer she is on TPN, the harder it is on her liver. Therefore, we really need to move forward with this PDA and get it to the point where she can start taking my milk. Please pray that the next 3 doses of medicine do the trick. We really don't want to face surgery at this point in her life.

With these couple of setbacks today, G and I decided we needed to leave the NICU and do something fun to cheer up our spirits. It has been a gorgeous day here in Indianapolis! Karrie told us last night that we can buy fleece for her linens so we don't have to use hospital linens (Elise thinks they are boring...). This is just another way we can make her NICU stay a "home away from home." So we looked up a Jo-Ann Fabrics and had fun picking out cute girl fabrics...interesting how Daddy is now getting into the fun of picking out girlie stuff...before, his eyes would glaze over and he would let me take care of things. Daughters change their daddy's pretty quickly! After shopping, we of course had to treat ourselves to milkshakes- ha! What's the saying...'stressed' is 'desserts' backwards??

Later tonight Uncle M got to see Elise. We are lucky that he is working a boat show in downtown Indianapolis this weekend. He got a little time away tonight to come say hello to his precious niece.

After we visited with M for a few minutes, we made our first trip home to Seymour. I only had 2 or 3 "cry waves" on the way home. That amazing hubby of mine was right there to talk me through it. The most heart wrenching moment was walking out of the NICU. However, knowing that Karrie, Elise's favorite nurse, is taking care of her tonight makes me so very less anxious.

My bed was calling my name after 2 weeks of being in a hospital bed--having surgery--then to a hotel bed for a week. I am anxious to find a routine that works for our family. G is going to head back to work for the time being. I've been reading tips and suggestions from other NICU moms about what is healthy vs. unhealthy while on this long medical road. I've already come up with a few ideas that will help ease my nerves such as keeping overnight bags packed and ready to go in the car at all times, calling and checking in with the nurses when I feel the need (I have the number as a favorite on my cell phone already!), and doing little projects at home that make me think of our little lady (we haven't touched her nursery yet- so I have plenty to do there!) I am not a "sitter" so these next few days will be important that I find a good routine for all of us (and get caught up on sleep, laundry, grocery, etc).

We once again THANK YOU for all your prayers, messages, texts, cards, gifts, and phone calls we have received and continue to receive. When we have little dips like today it's so nice to read the messages that are posted here and on Facebook and know that there are many, many prayers being sent up around the world for our little fighter. It makes us feel as though we can march forward with another day.

G & J & E
P.S...Elise says TGIF to all of Mommy's teaching buddies-- Mommy remembers all to well what Friday nights felt like after a long week of teaching. Hang in there ladies! If I remember correctly, it's a 3 day weekend for you--- yeee-hah!! Enjoy!

1 comment:

  1. Hi guys! Your nurses sounds so attentive. Elise is going to have an awesome scrapbook one day with all of these cool pages that they are making for her! We will keep praying for the PDA to close. I am sure that it is helpful to make connections with other parents in the NICU while you are on similar journeys. We will keep praying on!!