Time's a Flyin! Part 2

The first couple of days in the hospital were wonderful!  We had a beautiful baby girl, who was healthy and perfect!  She spent a little less than an hour in the NICU after her birth because she appeared to be a little "sluggish."  Because of her prematurity, the doctors wanted to monitor her for a little while to make sure she was okay.  In less than an hour, the wonderful nurses brought Harper back into the room with us and said she was great!  What a blessing!  We spent Friday and Saturday basically staring at our little angel and praising God for how blessed we are!  

September 1, 2012
1 day old

On Sunday, I was discharged from the hospital with the understanding that I could stay in the room as a  hospitality until Harper was discharged.  The doctors wanted to keep her for a couple of extra days until she got the hang of eating.  This is something that is very common in babies born just a few weeks early; they haven't fully developed the sucking reflex needed for eating. 

 That afternoon as we were feeding Harper, everything seemed to "click"!  Harper started eating and did a great job!  She got the hang of eating and WANTED to keep eating!  This was a HUGE deal, and our wonderful nurse and lactation consultant were super excited!  All of the sudden, I noticed what looked like a shadow spreading over Harper's face.  I looked at the window.  There was no change in how the sun was coming through the window.  I looked back at Harper, and the "shadow" had spread, and she had become very still. In her excitement to start eating, Harper had stopped breathing.  The nurse quickly got her moving and breathing again and decided to put her on a monitor to make sure her vitals were okay.  We thought maybe this "dusky spell" was due to her just getting too much milk too quickly resulting in her choking a bit.  So, we spent the rest of the afternoon wrestling with wires and a machine that beeped every time Harper moved the wrong way!  To say it was a bit stressful is an understatement!  That evening, we decided to ask the night staff to watch her during the night because of the beeping.  The sent her to NICU with the understanding that it would just be for the night and that they would run some tests to see what had caused the episode.  

Barry and I decided we would try to get some rest.  All I remember happening next is waking up as the nurse was telling us they had admitted Harper to the NICU.  The dusky spell had really concerned them, and they wanted to keep her there.  I don't remember much of the rest of that conversation.  The next morning, Barry filled me in on the details:  Harper was admitted to the NICU, tests were being run to to rule out causes for the dusky spell, they inserted a feeding tube in Harper's nose, and they inserted an IV port as a precautionary measure in case the she had an infection of some sort.  Barry went to see her that morning while I was getting cleaned up and and tried to prepare me for what I would see when we walked into see her for the first time.  Because she was so tiny, they had to put the IV port into a vein in her head.  That combined with the feeding tube was a bit more than I could handle at first...especially less an 72 hour after giving birth!  (I thought about inserting a picture of her at this point, but it still bothers me to look at the pictures with all the tubes!) I was on a hormone high, and the tears started flowing!  We stayed for her feeding, and then the nurse let us do "Kangaroo Care" with her before we put her back down to rest.  We went back that afternoon for her next feeding, and she had pulled the feeding tube out by herself!  She was eating so well at this point that the nurse decided it would be okay to leave it out.  The IV port also came out once the test results came back ruling out infection.  They decided the dusky spell must have been the result of her immaturity in the eating department.  

Over the course of the next few days, Harper had a few more dusky spells.  I affectionately began calling them "Blueberry Spells" because she looked like the little girl from Willie Wonka...blueberry from her head spreading down.  Our LC loved that name for it! After a few bouts under the lights to pull out the jaundice, Harper seemed to be on the up and up! 

Harper liked the "tanning bed" a little too much!  As soon as they put the
 mask on her she sprawled out and went right to sleep!

We spent a week in the NICU.  There were many ups and downs.  There were times that it seemed like for every one step forward, we were pushed two steps back.  Harper had to show two things before being discharged:  1.  She had to go 5 days without another episode, and 2. She had to stop losing weight and start gaining some back.  At her smallest, she got down to 5 lbs, 2 oz.  She was nothing but skin and bones and cheeks!  

This picture was taken on Sunday, September 9.
Harper had just been brought to our room to stay for the night!
This was the first time she had been out of NICU since the week before!

We were finally discharged on Monday, September 10.  We had an appointment with our pediatrician the next morning, and we were told we should receive the results of the second set of blood work screening they did.  The first set came back elevated, so they redrew and sent it off again.  We were told they were testing for things like Cystic Fibrosis.  We tried not to let this bother us too much, because, after all...there is no CF in my family at all.  We settled in at home with my amazing Mom there to help us for a few days.  

We went to our appointment the next morning, and we made plans to go back on a weekly basis until Harper regained her birth weight.  We also were told we would be called as soon as the screening results came back.  We received the call Friday, September 14, that Harper's 2nd screening was elevated even higher.  They were sending us to Vanderbilt for a sweat test...

When we went for the sweat test, we spent a horrible day in a little box of a room.  Harper went through the sweat test screaming, and we waited.  We waited for the results.  After what seemed like an eternity, the doctor came in to the room and told us the results were inconclusive.  Harper was too small to get enough sweat to test for CF.  The doctor gave us a lot of information about Cystic and started Harper on enzymes with instructions to come back for a weight check up in one week.  Before we left, they drew some blood so they could do genetic testing on Harper.  We were told that the longer we don't hear back about these results, probably the better.  The doc said that if Harper has one of the common strands of CF, it would show up immediately.

So we went home, and we waited.

I wish I could include a scripture at this point that helped me get through this week.  This week of waiting.  This week of "What if?"  This week of "Why?"  

The truth is, though, I was kind of numb.  I didn't want to think about the possibilities.  I didn't want to people to tell me stories of others they knew who went through these same types of tests and came out just fine.  I didn't want to see people.  I didn't want to do anything but cuddle with my 3 week old and my husband.  I didn't want to talk about any of it.  My personality is to be very optimistic in most cases.  There was a part of me that was very optimistic that Harper didn't have CF and that this was all going to blow over as a big scare.  I kept reasoning that her newborn screening came back elevated both times because she was born prematurely and was under different stresses in the NICU.  There are a number of different reasons that could have caused a false elevation in the screening.  Right?  Then reason would set in, and I realized there was a very real possibility Harper could have Cystic Fibrosis.  I so badly wanted to go back the next week and have them tell us the blood work had not come back yet.  I convinced myself that my gut feeling was that Harper didn't have the defective genes.  I was a bit of a mess that week with lots of ups and downs. 

Looking back now, there were a few things that really made an impression on me.  As I've said in a previous post, my brother reminded me of others praying for us when we didn't think we had the strength or the words to pray.  That meant and still means so much to me!  Another huge impact on my life at the time was our pediatrician.  We went back to his office for a weight check on Tuesday before going back to Vanderbilt on Wednesday.  After he finished his once over of Harper, he got to talking to us about the next day's visit to Vandy.  As he got ready to leave, he stopped at the door, looked us in the eye and said, "I'm praying for you!"  What an incredible thing to know that your daughter's doctor is a strong, Godly man who knows the importance of prayer!  I think about that often, even now, because I know he meant it!  Finally, I relied on the faith that the Holy Spirit would intercede for me in my prayers.  There have been countless times when I have broken down in tears, crying so hard I couldn't catch my breath while trying to pray.  The words just wouldn't come.  I was so exhausted - physically, mentally, and spiritually.  I'm thankful now that the uncertainty only lasted a little over a week.  

^{Romans 8: 26-27}

²⁶ In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; ²⁷ and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the^[j]saints according to the will of God.

**Disclaimer:  I promise my next post will be much more upbeat and positive.  I wanted to be very honest about some of the feelings I had during this time.  Thanks for taking time to read!