Wednesday, March 28, 2012

Lucy's 1st month - October 17th to November 17th

       After Lucy was born, we felt like we were pro's at this newborn thing (since Ella had survived).  Seriously, we were overwhelmed with the sense that God's got this.  Nothing bad was gonna happen because He had brought us through so much already.

At Brookwood Hospital - 2 days old
With Paw-Paw
With Nonnie
With Big Sister!

      While we were at the hospital, Lucy wasn't holding her temperature well.  We didn't worry.  She was having reflux episodes of amniotic fluid, just like Ella had, that scared us to death.  We just called the nursery and had them watch her so we could get some sleep.  We didn't worry.  She was getting a little jaundiced as we were discharged, but we didn't worry, we had been through jaundice before.    There was no trial that could test our faith.  He had prepared us.  Two Pediatricians came by to check her out.  Both of them commented that they could feel collarbones, and that she looked totally normal.  We know....but thank you.  We rejoiced!  I look back on those prior months of worry during my pregnancy almost fondly now.  We had no idea what was ahead, but we trusted in the ONE preparing the way.  If I had known what lay ahead in that 1st month maybe I would have behaved differently.  Thank you Lord, for all of the ways you reveal yourself and your perfect timing!  You only give us what we need and You protect us from what we don't.

First day home - with MeeMaw
This is the work of "Big Sister" - We are going to have to keep a close eye her :)

     On Lucy's 4th day, we took her to the Dr. for her 1st checkup.  She had lost down to 5lbs 11oz. Her bilirubin level when we left the hospital was 10.5.  It was up to 14.5 on this day.  Our Pediatrician suggested that we supplement with formula for the next 24 hours to flush out the bilirubin.  She also noted that she couldn't see anything abnormal just by examination and that Lucy looked perfectly healthy.  The next day we returned for a Bili recheck.  It was 14.7, basically the same, so they didn't feel like it would go much higher.  They didn't put her in photo therapy and they didn't offer to recheck her levels in a couple of days.  At the time, I was only concerned about her skeleton.  I trusted the Dr.  A decision I regret.  We called the after-hours nurse when she was 10 days old, because she didn't seem to be getting any better.  She was sleeping all the time and her skin was still very yellow.  They told us that it could take up to a month for breast-fed babies to get rid of jaundice and to just wait and bring her in for her 2 week check-up.

At Lucy's 4 day check-up
Lucy's 4 day check-up
You can see how yellow she was - Oct. 22, 2011

 It didn't register with us then that when Lucy was awake she cried most of the time, because she wasn't awake very much.  (Even as I write this the Lord is revealing Himself to me!! Thank you Lord for Jaundice!! I know that sounds crazy but it will make sense in a minute.)  This started a chain of events that may have ultimately saved Lucy's life.

What a good big sister!! Drying Lucy during her 1st bath!
Ella Grace is so excited to be a Big Sister!

  With everything going on we had forgotten to get Ella Grace a Halloween costume, so Jason searched everywhere 4 days before Halloween and finally decided on a Strawberry Shortcake costume.  Thankfully, she loved it!  That day, Lucy rolled over, from belly to back. (10 days old, the same age Ella Grace rolled over.  She didn't do it again for quite awhile though.)

Halloween Party at Daycare - Oct. 28th
Daddy and Lucy

    Week 2 - OK....she was having reflux...not after she ate, right before she ate.  Sounds mixed up right?  She was getting dehydrated, for several reasons:
1.) because she was sleeping so much from the jaundice,
2.) my milk supply was suffering because of infrequent feedings, and
3.) her stomach acid was building up when it was empty.
(We didn't know any of this at the time.)

     When you think of newborn reflux you think of projectile vomiting right? That's how it happened with Ella Grace.  With Lucy, it was only stomach acid so it was clear and thick and didn't come out of her mouth.  The 1st time it happened was when we were getting ready for bed on Thursday, October 27th.   Her eyes welled up with tears, she would shake and arch her back.  She couldn't get a breath.  She was choking.  You would have thought by looking at her that she was having a seizure.  The Lord made sure we were right there when it happened.  I screamed at her to breathe, flipped her over and suctioned her out!  It was terrifying.  Then afterwards, she was lifeless and completely "zoned out" for a while.  I would either hold her while she slept or prop her up in the boppy pillow in the bed between Jason and I.

     She was fine the next day so I thought that the episode had been a one time occurance.  Around 5pm that afternoon however, she had another episode.  Jason arrived home from work.  Lucy started continually having episodes.  So often that she could hardly catch her breath in between. She would arch her back and turn dark purple and you could tell she couldn't breathe, then once I got her suctioned, her eyes would roll back in her head and she would be "vacant".  I would snap my fingers or clap in front of her face and she wouldn't even flinch.  Jason took Ella Grace over to our neighbor's house and she offered to keep Ella for the night.  While he was gone, I called the after-hours answering service for our pediatricians office.  Whenever you do that, you leave a message and a nurse calls you back.  It was taking an eternity!  Finally, a nurse called.  She thought that it was possible that Lucy was having seizures.  She told me to hang up and call 911 and let the paramedics check her out.  The next few hours went by like a whirlwind.

     The ambulance arrived quickly.  Jason was frantically packing bags for us, for Lucy, and for Ella.  The Paramedics came in and started checking Lucy.  They decided that we need to go to the hospital.  We tried to put Lucy in her car seat but she couldn't tolerate the position without having an "episode".  We would have to be transported by ambulance  So, they put me on a stretcher and I held Lucy.

     When we arrived at Children's hospital, we were quickly escorted to a room.  They kept trying to reproduce the choking episode so they could see it first hand.  But by then I had fed her.  They did an EKG, drew blood, and put in an IV.  They had to stick her multiple times and finally left two lines in her, in case one failed.  They ordered a chest x-ray to check for pneumonia. 

EKG in the ER - Oct. 28, 2011 
Multiple IV's Oct. 29, 2011 

    The ER Dr. came by to speak with us about the x-rays and lab results.  She said that Lucy didn't have pneumonia but her ribs "looked funny."  Also, according to her labs, she was dehydrated and her bilirubin was now 18.2.  She was diagnosed with Breast-milk jaundice, this type of jaundice shows up during the second week of life, and peaks around the tenth day or later. It affects a very small percentage of infants (between 2% and 3%) It is caused by factors in the breast milk that block certain proteins in the liver that break down bilirubin.  She was also diagnosed with dehydration, and reflux with possible Sandifer's Syndrome.  They admitted us to rehydrate her basically.

Symptoms of Sandifer's Syndrome

While the symptoms of Sandifer's can be scary for parents to watch, the condition is generally not serious, and will often disappear once the reflux is effectively treated. Symptoms are sometimes mistaken for infantile seizures. Symptoms often occur immediately following a feeding. They include:
  • Arching of the back
  • Sudden rotation of the head and neck to one side, sometimes with the legs rotated to the opposite side
  • Gurgling noises
  • Possible abnormal eye movements
  • Possible vomiting
Episodes generally last 1-3 minutes, and can occur up to 10 times a day. The baby will typically become quiet during an episode, although sometimes fussiness will occur. Fussiness or crying generally occurs after the episode.

I've watched ALL of the videos on YouTube of Sandifer's and NOTHING posted there comes close to what we went through!
    We were moved to the special care unit, which is a large room with lots of patients in it, seperated by privacy curtains.  They close visiting hours at shift change and KICK YOU OUT for several hours.  It was horrible. They gave her fluids and supplemented my breast milk with thickened formula.  They had me pump my breast milk so they would know how much she was getting.  I would run downstairs to the lactation room, pump, run back upstairs, feed her, sit with her for a few minutes, then start the process all over.  There is no where for parents to sleep or bathe for that matter.  Lucy ate every 3 hours. I wasn't eating or drinking or sleeping enough. So it should come as no surprise when I tell you, my milk dried up.  I was so angry!  It seemed like we were there forever, but it was only 2 days.  I cant imagine being a parent of a child that is on that unit for any length of time!  Finally, we were moved to our own room.

FINALLY! In our own room! Oct. 31, 2011
Feeling much better!! Oct. 31, 2011
     On Monday, Halloween, a team of Dr.'s came to our room and wanted to get a skeletal survey done of Lucy.  That's when they x-ray every bone in your body. This request was based on the evidence of a skeletal dysplasia during my pregnancy and the "funny looking ribs" when we were admitted. Usually, it consists of around 20 x-rays, if they don't screw up and have to repeat some.  She had already had 4 x-rays when we were admitted so I negotiated the radiologist down to around 13. The films were reviewed by our "team" and they came to talk to us.  She had the flaring of her long bones that we knew about, but she also had widened and "cupped" ribs, that we didn't know about. It appeared as though each bone in her body had an unusual shape. The Dr.'s didn't know the significance of this but didn't feel that it was a metabolic problem.  They suggested that we follow up with genetics for diagnosis of a skeletal dysplasia and since Lucy was adequately rehydrated and her bilirubin had come down to 10.5, they discharged us.  She weighed 6lb 1oz. 


   We saw our pediatrician the next day and she put her on Zantac for her reflux.
Back at home..."Hi Nonnie!" Nov. 1, 2011
Slye girls reading a book Nov.1, 2011
   The 2nd Day home from the hospital, Jason called and said that he had a splitting headache.  He was having visual hallucinations and in general felt horrible.  I told him to make an appointment to see a Dr. before he came home.  He called a few hours later and told me that the Dr. thought that he had contracted spinal meningitis while at the hospital and he needed to go to the emergency room and get checked out.  REALLY?  So he went to the ER at UAB and after several hours, and some more unpleasant symptoms, they released him with a diagnosis of stomach virus!  By the time he got home, I was already starting to feel terrible.  I knew what was coming.  Jason's dad came and got Ella.  Poor Lucy cried the whole next day....all day..until she would tire herself out....she couldn't even tolerate a bath.  Its really hard to tell when a newborn with reflux gets a stomach virus but her discomfort was clear.  Even if I had wanted to try to get my milk supply back up, the stomach virus totally wiped it out from dehydration.  I took it as confirmation from the Lord, that Lucy would do better on formula.  As hard as it was, I would have tried for months to get my milk back, I felt the Lord telling me to rest and trust Him.

Nov. 2 - Lucy's 1st sickness, a stomach virus, 16days old
Nov. 6 2011, feeling much better!
Nov. 11, 2011 - showing mommy how she could be a good big sister.
Nov. 11, 2011 - Propped up sleeping on the boppy pillow during mom's garage sale.
Nov. 12, 2011 - Visiting Poppy, Cici, and cousins, Emma and Cooper.
Nov. 13, 2011

OK, that situation was really bad, but if it hadn't been we wouldn't have been admitted to the hospital and never would have had any x-rays taken. (More to come in month 2!)

Nov. 15, 2011

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Nov. 17th 2011 - 1 month old

Friday, March 23, 2012

Lucy's Story - Pregnancy and Birth

  I have been keeping a caring bridge site for a while now and updating it with medically relevant information that we find out about Lucy.  There is a text and picture limit on caringbridge that keeps me from sharing all that I would like to at times.  So, I have decided to move back to the blog that I had been updating since Ella was born. I have been neglecting it since we found out about Lucy.  I want to share so much more!  Plus, its a record for my children.  I have found that the only way I can remember when Ella started crawling, eating solid food, etc. is to look back at this blog.  One day maybe I can print it out and make a book for them.  If you would like to follow this blog the same way you follow caringbridge, you can type in your email address on the left hand side of the page where it says "follow by email".
   Anyway....I'm going to move the caring bridge posts and try to bring in a few updates on Ella Grace as well.  I want to start with Lucy's story.  Not only the story of her medical concerns but also the story of our family and how God is using Lucy to change our hearts and lives in greater ways than we could ever dream.  No one would ever ask for these challenges.  Only the Lord knows what you NEED.

    Jason and I face many challenges when it comes to having children.  Our first few pregnancies were all miscarried in the first trimester.  We tried for 3 years. As devastating as that time for us was, it never occurred to me that I wouldn't someday have children.  Looking back I see now that we needed that time together as a newly married couple to build the foundation of our marriage. God always has a plan.
May 21, 2005
     I started seeing Dr. Honea at the ART Fertility clinic at Brookwood Hospital in April of 2007.  She discovered that I had a non-typical form of antiphospholipid antibody syndrome. I form clots at the placenta, which is why I could never get past the first trimester.  The placenta could never take over supplying nutrients to the baby because of the clots.  By July of 2007 I was pregnant again.  This time Dr. Honea had me take progesterone, give myself heparin shots, and take baby aspirin.  The first trimester came and went.  I had a subchorionic hemorrhage around the sac the baby was in, but it resolved itself and caused no concern.  The second and third trimesters were uneventful, and finally on April 9th 2008, we had a perfectly healthy and beautiful baby girl and named her Ella Grace.  Our first little miracle.
April 9, 2008
April 9, 2008
April 9, 2008
     When Ella turned 2 we started wanting to have another child.  I wanted to be pregnant through the winter and since we knew the "recipe" for success, we returned to Dr. Honea for our 2nd child (7th pregnancy).  We got pregnant right when we wanted to, in July 2010, once again I had a subchorionic hemorrhage around the gestational sac, but it did not cause any concern.  But this time I also had placenta previa.  We opted for a first trimester screening.  We were so confident.  For us, it was just another ultrasound we were getting to see the baby.  During that screening, which they do at 12 weeks, the Dr. observed a heart defect.  SHE (another girl) had "significant regurgitation observed in the tricuspid valve."  The Dr. felt that it was possibly a sign that the baby would miscarry.  When I went for a 14 week check up on September 13, 2010, they could not find a heart beat.  We had lost her earlier that day.  She was measuring to the day, the size that she should have been.  Our first 2nd trimester loss. Though we had many good intentioned people say to us "it just wasn't meant to be," we realized that her brief life served a great purpose.  She drew us to the Lord.  Seeking, pleading, relying totally on Him. On the day that our baby's heart stopped beating, I was so full of faith that I believed that it had not.  Even after accepting the reality of the truth, the peace of the Lord overwhelmed me and Jason and we were able to see the bigger picture.  During that time, unlike any other, we were able to connect and share our faith and it came so easily.  The day after we lost her I wrote, "I praise the Lord, that He loved us enough to challenge us in this way.  Not only to draw us immeasurably closer to Him, but to aide us in what we had been praying for; being able to share our faith.  It had been uncomfortable for Jason and I both.  Her life was not wasted, she changed us forever."  She also challenged us to imagine what life would be like with a child that had a physical challenge.  Looking back, wow, she prepared us for Lucy.

    We were required to wait a few months before trying again.  Dr. Honea suggested I be tested for IGG deficiency (Immune deficiency), there is some research that shows a relationship between immune deficiency and antibody production and miscarriage.  The treatment is IVIG infusions.  The test came back and showed that I was deficient.  So, thank goodness, insurance would cover treatment costs (around 5000 an infusion).  I began monthly infusions immediately (October 2010).   On my grandmother's birthday (Emma Lou) (I think of this as heavenly foreshadowing), the day after my 32nd birthday, I had a positive pregnancy test. I started immediately on my regiment of shots and pills, but also added monthly IVIG infusions. 

   This pregnancy proved to be extremely challenging.  Immediately, at 6 wks, Dr. Honea was already seeing a subchorionic hemorrhage. At 12 weeks, partial placenta previa.  I was put to bed for a week.  At 13 weeks, we had our first trimester screening.  All good news! No heart or other structural defect, chances for Downs was 1 in 9300, Trisomy 18 was 1 in 10,000.  At 14 weeks, I switched from Heparin to Lovenox (2 shots a day to 1).  Whew! That's Better! Everything was good.  The baby was measuring right on target.  At 16 weeks, the hemorrhage was gone and Ella named the baby "Jesus Broccoli".  I think she wanted a brother.  Unfortunately for her, it turned out to be another GIRL.  We were so excited when we found out that we were having another girl!   We chose the name Emma Lucy after my grandmother, Emma Lou Cabaniss. My "Lulu" was amazing! LuLu had been fighting ovarian cancer for 5 years. She was so strong and such a fighter and an inspiration to so many.  
February 27, 2011
April 24, 2011 (Easter)
    At 19 weeks, she was measuring right on target for her due date.  At 23 weeks I started bleeding.  I went to the Dr. to get checked out.  Lucy was fine.  But when the technician started measuring her long bones she noticed that her femur had only grown 2 days in 2 weeks time. At 24 weeks, her long bones had fallen another week behind.  My OBGYN said that she thought Lucy might have a form of dwarfism. We were quickly referred to a Specialist at UAB to follow Lucy's progress. Her long bones continued to fall further and further behind in growth at each ultrasound. At 27 weeks, her bones began to flare (metaphyseal flaring). At 34 weeks, our specialist told us that her chest was small and she might have some breathing problems.  
    At 37 weeks, her legs were behind nearly 2 months, her arms - 6 weeks, and her collarbones - 3 months behind.   We were nearing delivery, our specialist presented us with several possible scenarios. 1st, he reassured us that her condition should not be fatal....thank you Lord. However, she appeared to have a small thoracic capacity, micronagathia (small jaw) which could cause some breathing or feeding problems, possible cleft palate, collarbones that were not fully formed, and metaphyseal flaring in her long bones which may cause weakness and stunted growth. He estimated at her birth, she could be between 16 and 17 inches long.   
July 27, 2011
July 27, 2011
July 26, 2011
    OK, now we are getting close to her birth story and let me just say, that each Dr. visit we had, and there were MANY, left us devastated in different ways at every visit. There was always a new theory, a new diagnosis, or a new discovery that left us spinning.  We mourned, we prayed, we begged God to intervene.  I am a researcher and planner.  That is my nature.  It's the way God created me, it is one of my gifts, but it also interferes with my faith.  At first, I set out to "figure" out what was going on.  I researched day and night, any time there was any new information, I studied it.  That should come to no surprise to anyone who knows me.  The day after any Dr. visit, I was calling for Dr.'s notes, I wanted ultrasound reports, lab reports, I believed that if I could put all of the pieces together, I could prepare for the future and for being Lucy's advocate so she would receive the best care available.    I believed that was why God gave me those gifts.  We sought counsel with our pastor.  I think we did most of the talking and he mostly listened, which is what we needed.  We expect our pastors to work miracles when we go to them, don't we?  But the LORD, did do something amazing in that one little counseling session...Our pastor took one look at my "to do lists" and said "Mary, Mary, why you buggin'?"  Referencing an 80's song, its one of the reasons we love him :)  But the lesson was that I was being like Martha in Luke 10, so concerned with preparations that I was not seeking the Lord (like Mary).

 38Now as they were traveling along, He entered a village; and a woman named Martha welcomed Him into her home. 39She had a sister called Mary, who was seated at the Lord’s feet, listening to His word. 40But Martha was distracted with all her preparations; and she came up to Him and said, “Lord, do You not care that my sister has left me to do all the serving alone? Then tell her to help me.” 41But the Lord answered and said to her, “Martha, Martha, you are worried and bothered about so many things; 42but only one thing is necessary, for Mary has chosen the good part, which shall not be taken away from her.”

   From that day on I prayed to be less like Martha and more like Mary.  The Lord didn't change me overnight but over the course of my pregnancy, I slowly learned that the Lord was in control, He would not abandon us, He was with us, He would help us, all we had to do was trust Him.  By the time our final specialist appt. came around, I didn't even want to go.  I was at total peace.  I didn't request reports and I didn't immediately leave and frantically begin researching the latest list of syndromes that Lucy could possibly have.  We were just ready to meet her.  Jason didn't have as far to go in trusting as I did, but when the time came, we were ready for her and we knew that:

 1.) The Lord had a plan for her
 2.) The Lord would not abandon us
 3.) He was in charge.

   We began to see the Lord's hand in mighty ways leading up to the week of Lucy's birth. "LuLu" had wanted to see Lucy born so badly but God had another plan. The week prior, my grandmother began saying things in her last moments that made us certain that she was talking to the Lord as she drifted from us.  It was a rare gift in a difficult time. LuLu lost her battle with cancer and left us for Heaven on October 14th. We were able to celebrate her life and have her funeral by the 16th! It was full of joy instead of mourning and full of little quirks and ironic twists that made us think that grandmother would have really enjoyed it. We enjoyed thinking that maybe she was getting to see Lucy first, after all.  

   On October the 17th, Emma Lucy Slye, was born.  We arrived at Brookwood medical center at 6:30am to prepare to be induced.  I was only dilated 2cm, which is what I had been for 2 weeks so the nurse thought that we would have a long day ahead of us.  She estimated that Lucy MIGHT arrive around 5pm.  We told her about all of the complications that we were prepared for and we talked about all of the people that were praying for us.  The entire time I was in labor, Jason and I were continuously getting text and emails from friends and church members that were praying for Lucy.  Around 11:30, the nurse sent mom and Jason to Lunch.  At 11:50, the nurse checked me and said that I was 10cm!!  She said we needed to slow the prayer team down! (Yeah, right!) I needed to call Jason to get back fast.  I kept trying and trying but he had no service.  I was in a panic.  Finally, I got him at 12:30 and told him to hurry!  The nurse paged Dr. Barron and told her to hurry too!  Jason ran in the room at 12:38 and she was born after 1 push at 12:50!  Perfect in every way!! We were so anxious to have her weighed and measured!  We watched as they checked her out.  Her apgar scores were and 8 and 9! Finally they weighed her, 6lbs 4oz!  The guy that was cleaning her up had a speech impediment and stuttered, Jason couldn’t stand waiting…he was bouncing up and down nervously...he asked how long she was and he said……."sh…sh…sh..sheees……nineteen inches"!  WHAT!! WOW!! Those few seconds it took him to get it out seemed like an eternity.  (This is a great part of the should hear Jason tell it!)  She was breathing fine on her own!  Her palate was not cleft, only a high arch!  The neonatologist was on standby to be in the delivery room but we never needed him. 
   The Lord had given us so many miracles, from grandmother, to the labor, to a perfect little girl.  We had been worried about her since I was 19 weeks pregnant, now here she was and the Lord had given us such peace the whole day.  She looked so much like her sister!  We were transported to a room and all of our family joined us.  A nurse came in to give Lucy a bath and take her vitals.  Cici (Jason's Step-mother) brought Ella Grace to the hospital just in time to see her get a bath!  She instantly loved her so much.  She got to give her the monkey she got her as a gift.  She was worried about mommy too, whether my tummy was hurt, and If I got a Band-Aid :)  Lucy had the cutest little baby mullet J    Jason was on cloud 9! He was so pumped up that night, he was calling everyone he could think of that he knew had been praying for Lucy and was telling them what God had done!  He was so excited he wanted everyone to come have church in the hospital right then!  The stress  of the previous months made the thrill of Lucy's dramatic arrival so much more exciting!  We were able to see God's great love for us, for Lucy, how he touched other's and drew them closer to Him!  Only a few hours old, and already, she has such a mighty testimony for the Glory of the Lord.  If nothing else happens in her life, she has already done such great things!   Little princess - Big Impact!
October 17, 2011
October 17, 2011
October 17, 2011