Wednesday, October 26, 2011

Quick Update on Life

I am so sorry I've been so absent from blogging!  We have moved into a new apartment, made a trip to the ER and had multiple doctor appointments. I am about finished with the beginning of Harper Kate's little life.  My plan now is to blog about each month of her life to catch you all up!  I know the few readers I have are ready for me to get back to this!

  Well, like I said, we've moved.  We were living in Peachtree City, but now we've moved to Newnan, GA.  It's about 15 minutes south of PTC.  We got a new apartment that is newer, nicer & cheaper. :)  So, I'm pretty excited about that.  We're all unpacked, but still have to hang the pictures on the wall & get some valences for a couple windows made.  I found some fabric @ Hobby Lobby that I need to go buy so we can get those finished.  Packing the old apartment and moving into the new one with a child is way different than before!  Luckily, we had 2 GENEROUS friends who helped us move up 2 flights of stairs to our new apartment.  I think we might owe them our lives after the hard work they did moving us in!
  I mentioned a trip to the ER.   Saturday and Sunday after we moved, we noticed Harper Kate wasn't feeling well.  Not only was she not feeling well, she slept basically all day and was extremely out of it.  Since extreme fatigue can be a sign of head swelling, we decided to go ahead and take her to the ER.  After bloodwork, a head ultrasound and a x-ray of her tummy, we discovered that she was full of air in her stomach.  It is still a mystery as to how she got all of that air, but needless to say we are all back to normal!  Thank goodness.
  We've been busy with check up appointments and doctor appointments.  The neurosurgeon checked her head ultrasound that we took at the ER and confirmed that there is still no swelling of Harper Kate's brain.  That is huge!  Over 75% of kids that have Dandy-Walker malformation end up having hydrocephalus that require shunts to be put in the brain to drain the excess fluid off.  With all of our other challenges, it would be a huge miracle if we don't have to get this done, but so far we don't!  YEA!  That is a huge praise for us.  We also visited the surgeon as a follow up.  Her surgical site is healing well & at the appointment (which Jarod didn't attend) the surgeon showed me how to replace the tube if needed.  I have a pretty strong stomach, but this really freaked me out.  A hole in her stomach that I'm supposed to put this "button" back in.  Luckily, I thought, the tube really doesn't come out much and I really shouldn't have to replace it much at all!  It hasn't been that way...That story is coming later, but needless to say I've now had to replace it TWICE!  Stay tuned for that drama.   We also visited the GI doctor.  All is going well with her feedings, but we aren't going to up the amount or calories right now.  She is gaining weight fine and seems to be doing well, so we are leaving everything alone for a few months.
  The last appointment we had was a trip to Emory Genetics.  I will blog about this appointment later after I've finished processing.  Basically, Harper Kate is still a mystery to doctors, but she is known completely to our Heavenly Father.  The doctors best guess is that what she has is probably autosomal recessive which means we will have a 25% chance that this same thing could happen in future pregnancies.  They are not certain about this, but like I said it's their best guess.  Jarod & I are not sure where that leaves us and we really haven't finished thinking through and processing.  We know God is in control and will guide us in our decision later.  Right now, I have a precious angel that needs my full attention as her mom.  We would ask for your prayers for guidance and wisdom as we process this news and, in time, decide what this means for the future. 
  That's a quick summary of what we've been up to.  I'll blog later this week about the day coming home from the NICU, one of the best days ever!  Then, I'll begin blogging about each month so that you all can get caught up.  Thanks for being patient.  My life got away pretty quickly.  My sisters quickly pointed out it had been a month since I've blogged.  Good grief...I'll be better! 
Love, Courtney
This is Harper Kate and her cousin Whit....yes, he's an Auburn fan, but we love him anyway!  Harper Kate decided to show him who is #1.  :)  Roll Tide Whit-man!!!

Monday, October 3, 2011

Our Days in the NICU

And we're back to the story....
  The day we were supposed to leave from the hospital was a little uncertain through the day.  The doctors weren't sure how long it would be until we could take Harper Kate home, but they thought it might just be a couple of days.  The hospital has this procedure that if your child is in the NICU, and there are empty rooms on the recovery floor, you can stay at the hospital with no care or anything, but just use the room to stay in until your child comes home.  Since we thought she would be coming home in a couple of days, we signed up to stay another night.  That afternoon, we learned that Harper Kate was having an EEG.  One of the nurses had seen her eye twitching a little bit and thought it might be a seizure.  So, when we went down to visit her that day her little head was covered in squares of tape with cords coming out everywhere.  Then her head was wrapped like a turban so she didn't pull them off.   I must admit no mother EVER wants to see her little 5 day old baby looking like this.  It was so hard especially since we couldn't hold her.  We met with the neurologist in the NICU before we went back up to our room, and at that time he said he didn't really see any seizure activity on the test.  As soon as we got back up to the room, the phone rang.  It was the neurologist saying that he re- looked at the test, and there was seizure activity.  I burst into tears, and my stomach dropped.  I had always known seizures were a possibility, but I was praying it wouldn't be a reality and now discovering that it was, completely devastated me.   All of this meant that HK would have to stay in the NICU for a while so that the doctors could administer the seizure medicines, get the doses correct, watch for side effects etc.  So, not only were we hearing for the first time that our baby girl would have seizures, we were forced to leave her at the hospital, alone, for the first time in her short little life.
  All I remember is crying leaving the hospital.  Once again, my experience wasn't the same.  I had to get wheeled out in a wheel chair WITHOUT my baby.  I carried out all of our flowers, gifts etc without HK.  There were no pictures, no smiles, no happiness.  Just packed up the car and headed home.  It was so surreal.  Had I just had a baby?  Really?  At first we didn't know how we would sleep.  We called Jarod's parents and asked them to head over and meet us at home, but then the more we thought about it we decided we would just go home and try to sleep.  We would call them in the morning and let them know what we needed.  On our way home, "Hold My Heart," by 10th Avenue North came on the radio.  We sobbed as we listened to the truths of this song and begged God to hold our hearts as we left our baby at the hospital.
  I remember getting home for the first time and my entire "in-law" family had finished Harper Kate's nursery while I was in the hospital.  Eric & Kristen (Jarod's brother & his wife) had left us notes around the apartment and written HK a special note in her crib.  I left that note there until I brought her home!  Seeing those notes around the apartment and seeing HK's nursery all ready for her was such a comfort to me.  I knew I would eventually be bringing her home and that made everything better.  My other sister-in-law Abby had left this flower in a vase in HK's nursery.  It was the PERFECT final touch in her room.  All of these things might seem small, but coming home to all of these special touches were a huge blessing.
  The next 4 weeks seem like a blur.  I couldn't drive for another week.  Jarod had to go back to work.  My mom came and stayed with us for the first 3 nights.  She cooked our dinner, drove me to the hospital and sat with me in the NICU.  We would go to lunch, then head up to the hospital and stay until Jarod came after work.  He would take his turn holding her and talking to her, then we would leave and head back home.  This was our routine for the first week.  After I could drive, I would wake up each morning, get ready & head up to the hospital.  And then the same routine again.  We had sweet family come and visit us various days while we were up there.  Jarod's grandparents came over and visited her in the hospital, Jarod's mom would come visit and my mom also.  I got to be great friends with the nurses, would take them cookies & goodies each day when I would go up there. :)  I would meet with the physical therapist and learn how to work with HK, meet with the lactation consulting people trying to see if HK could learn to eat.  We realized later that she was failing her swallow studies and couldn't really bottle or breast feed.  The doctors would come to the bedside and I'd learn her update for the day.
  Harper Kate was poked, prodded, examined and looked at by I feel like every doctor in that NICU.  The cardiologist, the opthomologist, the geneticist, the GI doctor, the neurologist, the neurosurgeon, some doctor who looked at her kidneys etc.  My child is not fearful of shots, blood drawn etc.  Strange?  Yes, but not when it's happened to you since day 1. :)  It's a good thing for me when we go get blood drawn & have our immunizations.  HK just whimpers a little bit like it's uncomfortable.  You know what all of those doctors found?  That EVERYTHING from below Harper Kate's brain was completely normal.  Now, I know that her brain is VERY important, but for her to have no heart problems, kidney or lung problems etc. was huge!  The geneticist examined her looking for any signs that she could have a genetic disorder.  At first, I really didn't like this geneticist, however, as time went on, I appreciated the fact that she was trying to help Jarod & me.  She didn't want us to have to go through this again, and anything she could do she was trying to do.  All in all, Harper Kate is still a mystery.  We don't know if what she could have is genetic, but guess what?  GOD KNOWS!   God is in total control over Harper Kate's health, development and her beginning.  God is in control on what will happen over any future children.  We go to Emory Genetics Department in October for some additional genetic counseling, but I'm really not worried.  I know that whatever they advise for us is just a recommendation and information that we can pray through.
  Our days in the NICU were days of ups and downs.  Some days Harper Kate would have great days, be on lower oxygen and on her way off, then the next day, she was back up and struggling.  Once again, God was reminding me that He is the only one I can depend on.  Doctors are knowledgeable and believe me I am so grateful for everything the doctors and nurses did for Harper Kate, but I could not depend on information they were giving me.  God was working on her in His timing and she would come home with us when He allowed.  I hope I was a light to those other parents, doctors and nurses in the NICU.  I took that month as an opportunity to minister to others.  I prayed that the people around me would notice something different and they would wonder how we were handling what God had blessed us with.  I didn't get a chance to share my faith, but found ways to mention God's strength when talking to the nurses. 
  Some fun memories from the NICU before quitting:  on Valentines Day, HK made us a valentine with her footprints stamped on a pink heart.  After her EEG's, our favorite nurses, washed her hair and put a hat on her with a bow made in the front.  I think the nurses loved playing dress up with the biggest baby in the NICU :).   I had so much laundry to do while she was there!  I think the nurses loved all of her little clothes.  The parents of preemies group brought HK a preemie size outfit with flowers on it & it quickly became one of our favorites for HK to wear.  Another group also knitted a hat and blanket for HK and left it at her bedside.  See, there were some good things that came out of being there! :)
  All in all, our days in the NICU were exhausting, trying, but mixed in with good times and lifelong lessons on our dependence on God.  Sorry for the long post.  I hope I didn't bore you too much.  I didn't want to forget any of the memories!
  The song today is different.  It is the song that played on our way home after leaving HK at the hospital.  We clung to it the whole way home!  Have a wonderful day!
Much love,