Monday, May 9, 2011

How we're doing.

I've been meaning to update for almost a week now, but every time I get on the laptop to write a blog post, I only get about 5 sentences in before quitting. Everybody who has been through the NICU experience says it is a roller coaster of emotions, and they are so right. It sucks.

It has been a rough week to say the least. Harper came into the world breathing on her own, but we quickly learned that she had two obstacles to overcome: 1) she wasn't absorbing enough oxygen, and 2) she had fluid in her lungs. I felt really good that she was stable and doing well and in the Level 2 (Level 2 is the less-critical stage of NICU). But as the hours passed, she was requiring more and more oxygen and struggling more to breathe. Then on Wednesday night, Rick and I walked down to visit her and the doctor met us at the door. She told us she was actually on her way to come and find us, and as I heard those words my heart sank. She told us that Harper was having some setbacks. That they had needed to go up on her oxygen. That they were moving her to the more critical Level 3 side, and that they were going to intubate her and put her on the ventilator so they could give her surfactant. She said we couldn't see her for a while because they needed time to "work on her", and that she would come to our room to give us an update soon. I tried to keep it together and put on a strong face, but failed and instead began crying hysterically. I can hardly watch Harrison get his shots, and here is my daughter struggling to breathe. Not only am I helpless to take away her pain, but I was being told that I couldn't even be with her to hold her tiny little hand.

Praise God, the surfactant helped her so much. She only spent one night on the ventilator and now she's getting her oxygen through a nasal cannula. She's now on 1 liter of oxygen and breathing at 21%, which is room level. The chest x-rays show improvement, but her respirations are still really high (she's breathing too fast) so we are waiting on those to come down before weaning her off the oxygen completely. Her body temperature is still being regulated through a closed incubator, and once she can maintain a temp of 98.5+ on her own she will be able to come off the sensors and finally wear clothes. Her bilirubin is elevated but just under the point of being labeled jaundice, and hopefully it's peaked and will start improving. We were able to feed her for the first time on Saturday. She didn't tolerate the bottle well at first and got her next few feeds through a feeding tube, but she's slowly learning how to suck and swallow. There was mention of the dreaded word reflux, but I'm not convinced it will stay an issue. They weighed her today and she is 4lbs, 11oz., which means she's only down 4oz from birth.

Everybody asks when she will be able to come home. I wonder this same question just about every minute of every day, but there is no way to know how long she'll need to stay in the NICU. There are 3 basic milestones she'll need to reach before being discharged: 1) breathe completely on her own, 2) eat full feeds on her own without gagging, falling asleep, spitting up, etc. and gain weight appropriately, and 3) maintain a normal body temperature on her own.

My recovery has been much harder than I ever expected. I'm in a lot of pain and still have trouble getting in and out of bed, the car, and sometimes even walking. I'm exhausted because I'm pumping every 2 hours, and I'm sure a lot of it is the emotional toll this has been as well. I try to focus on all the positives. I'm so grateful that she's stable. I'm so happy to be here with Harrison, even though I can't pick him up or even bend down much to interact with him.  I know it could have been a lot, lot worse and I tell myself this all day long. But at the end of the day, Harper's crib is still empty. We have an empty car seat. And I feel like I have a broken heart. My baby is alone in the hospital, with tubes up her nose and mouth, countless wires and sensors and monitors, and an IV sticking out of her forehead. We have to ask permission to hold her. To change her diaper. To feed her. Leaving her after our visits is so incredibly painful. Rick and I broke down in tears last night because you're not supposed to have to "visit" your daughter until she moves away to college. Each time we walk down the NICU hallway and pass by the nursery of the healthy babies, it's a reminder that our little girl isn't one of them. This has truly been the worst experience I've ever been through. Bittersweet is the epitome of my life right now. I find myself so happy to be home and with my family, and then I immediately feel guilty because life just isn't right without Harper here. I really am trying to focus on the positives, and I just need my brain and heart to get on the same page. I feel like we are barely surviving, but we are surviving.

We covet your continued prayers for our family. For Harper to improve with no more setbacks, and for a short-as-possible NICU stay. For Harrison to adjust well to all of the changes going on. For my recovery. And for our aching hearts that long to have our daughter healthy and home where she belongs.


Tienna said...

I love you all and I'm still praying.

Tracye said...

I can't even begin to imagine.

There's really nothing I can say, except that she's in the best possible place, and has the best possible care, and she'll be healthy and happy and home soon.

There is ABSOLUTELY NOTHING for you to feel guilty about. There is nothing you could have done to prevent it, and nothing you can do to change it now.

This is just a temporary
situation; the beginning of her testimony, and a part of yours.

Praying for all of you.

johnny said...

Praying for you and your family my friend! Hang in there...Harper is receiving the best possible care right now. Although it hurts being apart, this time will hopefully be shortlived. She's in the best of hands, both physically and spiritually! God is in Control~

Anonymous said...

I am SO sorry to hear that you and your family are in pain, Kelsey, both emotionally and physically. I've been through the whole NICU experience and you are in capable hands. Rely on them and your Father's hands and take one day--scratch that--one moment at a time. Praying for you all.

Anonymous said...

I can't believe that we are on day 7 of this.However, I saw the little angel this morning and she is doing a little better every day. Let just pray that her recovery continues and she can come home soon. We love you Harper. DaDa

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