4/30 Afternoon Update

Everlee has been consuming 15 ml of breast milk every 3 hours today. We are so glad she's getting even more of the proper nutrition her body needs. Its vital for her healing process and it's encouraging to know she's getting a piece of her mama as often as she can. They also turned her oxygen down to 22% which is very very close to room air. Her mean blood pressures have been averaging mid to high 40's all afternoon.

The big news of the day is that the Doctor has removed all of the PPH restrictions from Everlee because of her stability without the Nitric.

You know that moment in your life when your heart beats extra, and that lump in your throat feels like a bowling ball and you realize it's the happiest you've ever been?

I was lucky enough to capture that exact moment. Here it is!

Daddy definitely did his part too! He was able to contribute in the assisting of prepping Everlee for her first trip out of her NICU bed.  It is a rather scary feeling maneuvering around  all of her wires, cords, and IV's, and he handled it like a pro.  The look on his face matches the same admiration that his daughter feels for her father, and for Momma to be able to see her husband beaming with pride, is indescribable, not to mention beyond therapeutic!! I can't wait for him to be able to experience the feeling of his little girl snuggled into his chest for the very first time.

4/30 Morning Update

Everlee has remained stable throughout the night with her oxygen turned down to 30%. She continues to have mean blood pressures in the low 40's and is adjusting to little to no sedation throughout the day. Her feedings have been going very well every 3 hours and they will continue increase her intake if she allows them to.

She was swaddled for the first time this morning, and much to our surprise, our little wiggle worm actually seemed to be enjoying it.

Mommy gives lots of positive touch throughout our visits, and Everlee usually responds with a smile. We continue to pray for good days and recovery.

4/29 Afternoon Update

Everlee had birthday cake at noon and 3 pm!
They plan on feeding her every 3 hours as long as she keeps tolerating it.

(Birthday Cake = 5 ml of Colostrum)

This was a huge milestone for us. We've been talking about this day since she was first admitted to the NICU. It makes us feel so much better knowing that she's getting the proper nutrition from her Mama. Which, by the way, is something that I haven't mentioned yet, that REALLY needs to be mentioned.

My wife has been an absolute mothering MACHINE when it comes to producing breast milk. It's not a surprise to me at all, because I've seen her elite motherly instincts on display since the day she became pregnant. Everlee will definitely have enough food when she comes home, and I couldn't be more proud of the beautiful women in my life right now that I get to see every single day.

A very special thanks to Andrea Carter for sending us a prayer for our special Warrior Princess:
"May Everlee grow strong and healthy with each breath, each moment, healing grows, illness recedes, grows weaker and fades away. Breath brings in healing energy, feeding the blood, healthy blood flows cleansing itself, renewing and giving strength. Lord, protect her while healing is underway, bring a healthy balance."

Reason number 10,001 on why we feel so blessed to have the friends and family that we do.

4/29 Morning Update

We were ecstatic to walk into Everlee's room this morning and see that the Nitric Oxide machine was GONE! She did so well yesterday with the lowered settings, they removed it at some point in the middle of the night and her body adjusted very well according to her blood gas readings. Luckily, the good news did not stop there. Her Dopamine drip was removed as well! They had to turn her oxygen up to 34% to compensate for the changes in Nitric, which the Nurse said is very normal.

The screen below is from the respirator that she's hooked up to, and the bottom line graph shows the breaths that the machine is taking for her (in blue) and the breaths she's taking on her own (brown). I have never seen her take 2 in a row before, and before we left this morning she was taking 3 in a row.

They are going to let her be for awhile and make sure she continues to stabilize, before they start lowering her oxygen. Her blood pressure readings have been in the low 40's after all these changes, and the Doctor said he's happy with that, but would like to see her readings slowly start to rise.

Mommy and Daddy got to touch her tummy and head while the nurse drew blood. While Mommy was doing positive touch, the nurse commented that Everlee was much calmer than normal, even when they put a needle in her heal. So, we know our presence is greatly contributing to the healing process for all 3 of us. With the fantastic staff at Mercy, the prayers and support that encompasses us, we feel truly blessed to have such an awesome support system.

Here's a picture of her room that looks sooooooo much better with the Nitric machine gone and not taking up space.

Snuggled up and resting.

4/28 Afternoon Update

Everlee had a tremendous day! At noon the Doctor made a plan to turn her Dopamine down to 5 mg and turn the Nitric down to 10%. She responded very well to both of those changes throughout her 8 hour nap she took on her tummy. Her mean blood pressure held steady in the mid 40's with about 1/3 of her readings going into the 50's!

When we returned for our 4 pm visit, the Doctor looked at her blood gasses and said they looked great. So he made the decision to turn her Dopamine down to 3 mg and her Nitric down to 5% to see how she would respond. For the hour we spent with her she did well, but we won't know the full story until 10 pm tonight when we call for a status update.

She is making us so proud with her strength to recover, and her drive to get healthy. We love her so much, and can't wait to hold her for the first time.

Mommy got to help with taking her temperature and changing a poopy diaper. (I helped as well, by holding the wet wipes and handing them over as needed). *pats self on back*

4/28 Morning Update

We just got back from seeing Everlee this morning and all of her stats were stable throughout the night. The nurses continue to remove fluids from her lungs which is basically a clear mucous at this point.

They were able to slightly decrease her oxygen to 26%. They removed the headband from here eyes, because they believe she is ready to take on additional stimulation. Mommy was able to give her some positive touch reinforcement for 30 minutes during our visit, which was a nice step in everyone's recovery.

Being able to touch her and feel her breathe was amazing. She is such a tough little girl and we couldn't be more proud of how hard she continues to fight.

Introduction

Hello Friends and Family,

Welcome to the new Kneifl family blog! A personal place we carved out from the digital world for photos and stories of our little Warrior Princess. Everlee Rose has had a rough start to her life, but she continues to fight her way closer to a full recovery and finally coming home to Mom and Dad.

There are a few important numbers that we look at to judge how well Everlee is doing.

1) Nitric Oxide: This is a gas that goes into her breathing tube and helps relax the lungs and attach the oxygen to the red blood cells. This is the main ingredient to help her recover from PPH (Persistant Pulmonary Hypertension) that was brought on by meconium aspirtaion. The max % they use on infants is 20% and that's what she started at when she was born. The Dr's strategy is to slowly decrease that number and allow Everlee's body to take over. As of yesterday evening they had dropped to 16, and will continue to drop in increments of 4, until she gets to 0.

2) Oxygen: This is an obvious necessity for recovery. When she entered the NICU, the machine was supplying a 50% mix of oxygen to her body, and taking 35 breaths per minute for her. As of yesterday, the machine had been turned down to 28% and Everlee was taking every other breath by herself. The air we breath at home or outside is 21%, so as we get closer to that number, there's a good chance they'll be able to remove that machine.

3) Mean Blood Pressure: This is a number that they like to have at or above her Gestational age in weeks, which is 41. A perfect number would be her Gestational Age in weeks + 15. When she got to the NICU, her blood pressure was 28 and starting to get closer to the danger zone. They currently use 8 mg of dopamine to regulate her blood pressure (which is still considered a small dose), and she showed some stability yesterday with an mean blood pressure average of 46.

They take samples of her blood twice a day to make sure she has the correct levels of oxygen absorption and the Doctor said those have been coming back outstanding lately. They plan to lower her machines very slowly and her body will let us know when that time should be. She's running the show now, and we are on her time.

We pray for her every day, and we know our friends and family are doing the same. We cannot express how much appreciation we have for our support system. You have helped us through this process tremendously

A special thanks to Hollie, Jason, Chloe and Copper Smith for supplying Everlee with a crib medallion. This hangs next to her as she recovers as a reminder of the strength and faith that encompasses her at all times.