Monday, April 30, 2012

Elise Will Call the Shots

We couldn't wait to get to the NICU today to see our sweet muffin. Grant, many times, has to spend a few days away, due to his work schedule, before he gets a chance to spend a day with Elise. I can usually only spend one day at home before I'm chomping at the bit to get back to Elise's bedside. We really get excited when G's work schedule allows him two days off together, like today and tomorrow.

When we arrived today, unexpected to us, Elise was not acting like herself. She was pale, fighting to breathe, and dropping her oxygen from the 90s (where she needs to be) down to the 40s (not good). The nurse informed us she was watching Elise extra closely today because of her off behavior and that Dr. Pyle had been notified during his examination.

Daddy Grant held Elise first. Grant kept studying Elise face and body cues as he rocked her. His face became more serious the longer he rocked. He finally said, "She does NOT look good and I'm really worried about infection." This of course made me very nervous. Not the infection road again?! Elise had just taken the slight step backwards to Vapotherm Friday night, so why is she looking weaker?? The jump from nasal cannula to Vapotherm was suppose to support her....not weaken her.

Grant took off his gown and gloves and asked to speak to Dr. Pyle immediately. I don't know what came over me, (ok, yes I was mother worry overload) but I held Elise close to my chest and began to sob.   It was the ugly/worrisome cry. I just couldn't help it. As I told the nurse, Elise was "too still" as she laid in my arms and her breathing was very rapid. I'm no medical professional, but something was wrong.

Dr. Pyle came to the bedside right away. He ordered a CBC (a basic infection blood draw) and sat down to talk to us. Dr. Pyle didn't believe Elise was getting sicker, but he did think she was exhausted from her trial run on nasal cannula and taking so many bottles. As the doctors and nurses always say, "The babies will tell us what to do and when to do it." Isn't that the truth! When Elise was placed back on Vapotherm Friday evening, she went on 1.5 liters...the bare minimum. Due to her behavior today, she was placed back on 3 liters. No more bottles while she is exhausted....feedings will go on the pump. Dr. Pyle wants her to be as comfortable as possible and gain more weight. Again, it's all about maturity and weight gain. Bottles and breastfeeding are only successful after the maturity and weight gain kick in.

Although I knew all these rapid changes were what Elise needed today, they all felt like huge steps backwards. When she initially started on Vapotherm three weeks ago, she was on 3 liters. They weaned her down by half liters (over 2-3 weeks) until she was at 1.5, and then she tried nasal cannula for 24 hours. When they put her back on 3 liters today, I felt like the last 3 weeks of progress were stripped right out from under us. I guess you could compare the ups and downs of a NICU stay to the game of Candy Land. After pulling cards that read, "take 2 steps forward," a card that reads, "take 4 steps backwards," can easily sink your spirits.

As Dr. Pyle and Grant discussed Elise further, I continued to hold her and cry big Momma tears. I kept telling myself to 'get it together,' but the minute I would look down at her being "too calm" in my arms I would start to cry all over again. Before Dr. Pyle left the bedside, he stepped in front of my rocker, bent down, and got eye level with me. His words will never leave my mind for as long as I live. He said, "Momma. Momma. Listen to me. I think of your daughter as one of my own. She is going to be ok. I know this is frustrating for you and you are simply heart broken that we've had to take a few steps back. She will get back to where she was and you WILL be taking her home someday. I promise you this. Hang with me. I've got your daughter. I've got her." 

After hearing what Dr. Pyle had to say, I was reminded what wonderful care ALL of us are receiving at St. Vincent's...not just Elise. Dr. Pyle has a wife and four daughters of his own. This tells me he has probably spent many nights trying to 'get through' to females. He sure got 'through to me' today.

After an exhausting day, I took G out for an early birthday dinner. We promised ourselves that we would put on happy faces and indeed celebrate. We did just that! After dinner, we went back to the NICU for our 'night cap' with Miss E. She was already acting MUCH more like herself. The CBC came back NEGATIVE so infection looks like a very small chance. There is one more lab that will come back tomorrow morning that might show something. However, since she is already acting more like herself, we are all led to believe that this past week's activities (bottles, nasal cannula) were too much for her at this point and she simply tuckered out. Today was her day to say, "stop, I need to catch up."

Tonight, we gave her a spit bath (not wanting to use up too much of her energy), dressed her in clean clothes, and snuggled her in Mommy's arms until she was fast asleep.

All 4 lbs. 5 ozs. clean! 

Look who went from her bassinet to a big girl crib! 

Since Grant is hard to buy for when it comes to birthday gifts, I decided Elise needed a gift that would make Daddy smile really big.

Personalized Baby Scrubs! 
Even though we've got more progress to make on our NICU journey (and even though it's progress we've already made once), we can't wait to spend another day with our muffin tomorrow.

On Elise's time...not ours,
G & J & E

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