~Our Story~

We found out about Mikayla's hlhs one day before our fifth anniversary and two days before we were leaving on a vacation with our daughter Kelsey to  Florida.  What was once a happy, healthy pregnancy turned into fear and uncertainty. For the remaining four months I couldn't think about anything else.  I distanced myself from friends for a while.  I was tired of telling our story over and over and depression was starting in on me.  How could I be happy about this life I was carrying?  I didn't know what her outcome was to be.  Well, that was all soon to change, I bought books, read up on hlhs on the Internet and became relieved as I read other parent's stories.  There was hope.  As months went by and our due date was rounding the corner I couldn't wait to deliver her, but part of me wanted to keep her inside me forever, for I knew nothing would happen to her while she was inside of me, she grew as normal as could be.  The day has finally arrived.  I was going to deliver her by c-section at Brigham & Women's in Boston. I don't think I slept much the night before.  We had to leave by 4:30 am in enough time to arrive two hours before scheduled surgery.  So I wrote my six year old a letter, letting her know she will always be my first baby and how much I love her, and kissed her good-bye while she slept. After arriving and being prepped for surgery, My husband and I were now in the operating room along with several doctors and a NICU team.  Talk about hectic. I just couldn't wait until it was over.  Well, here she is.......

September 4th, 2003    9:51 a.m. 6 lb. 13 oz.
They whisked her away to the corner of the room to examine her.  I just want to see her, is she OK, is she blue is all I kept asking my husband.  Finally they came over to us, handed her over to my husband and said "quickly, we don't have much time, kiss her good-bye."  My heart froze.  She was so beautiful, we couldn't stop our tears and off she went.  Surgery for me was finally over about 45 minutes later and I was headed for recovery.  My husband went down to meet our families and give them updates. I became severely sick from all the medications.  They told me as soon as I felt better that I could go to over to Children's Hospital via connected bridge to see my precious angel.  I knew that wasn't going to be anytime soon due to how sick I had become.  Before I knew it the NICU team was standing beside my bedside with our baby.  They were headed to Children's with her and wanted to give us sometime together. She was covered with IV lines and oxygen tubes, but I saw past all that and didn't want to let her go. They started her on prostaglandin's in order to keep her hole in her heart open.  That was extremely important.  Well, three days have past. I spent most of my time over at her bedside instead of recovering at mine.  Which was not too smart, but I couldn't be without her.  Finally......

Sept 8th

Kevin and I were visiting with Mikayla.  Everything seemed so perfect.  She was not ready to have her operation yet.  Doctors were amazed at how well she was holding her own.  It was rare to be doing so well.  I knew I had an amazing, strong, not going to give in baby.  When all of a sudden the nurse asked me to push a red button.  I couldn't figure out why, till I read the button. Respiratory teams and cardiologists came rushing to her side.  I looked down and she had stopped breathing.  I ran out of the room so fast, this could not be happening. All families were rushed out of the ICU, Kevin and I stood there, waiting, waiting, and waiting.  Please don't tell us she's gone. Dr. Laussen finally came out with a smile on his face.  She is fine.  He told us "her heart has finally grown tired, it is telling us it needs help now."  They had to intubate her, put in an arterial line and foley catheter.  When we were finally allowed in, which felt like an eternity, she was a completely different baby.  Now hooked up to all kinds of machines. How is she to survive all this suffering?  I felt this to be so unfair to her.  Kevin and I were getting frustrated.  Will someone set her up for surgery and get this over with. Time was not on her side anymore.

Sept 9th

We met with surgeon Pedro del Nido.  He explained how the surgery was going to happen.  It all seemed way to complicated for me to understand.  At that point it didn't matter to me.  He knew what he was doing was all I needed to understand.  They took her away from us yet again, we said our good bye.  This time was different.  We didn't know if that was going to be our last time with her. Will she be coming back?  I felt helpless.  Surgery started around 1:00 pm. We kept getting updates every hour from Nurse Doris.  What a saint she is.  She has so much love in her heart.  Our first update was that they had Mikayla sedated. Next was the first incision was made, onto opening her chest.  Then we heard her body temp had been lowered, her head packed on ice and now her life was depending on the heart and lung machine.  Time that day went by way to slow.  Our last update came with uncertainty. There was a lot of bleeding that they could not control.  All we could do at this point was pray.  Mikayla has very special angels among her, I prayed to family members and a very special friend.  Please watch over her and help her through this.  Finally about 45 minutes later in came Dr. del Nido. Surgery was over and was a SUCCESS!!!  Thank you Mikayla's angels.

Sept. 10th

She was sedated all day.  Doing great and stable.  Keep fighting my baby.

Sept 11th

ICU nurses told us not to expect much today.  She will be sleeping.  Well, to our amazement and everyone else's, she kept opening her eyes and fighting the  ventilator.  She was trying to breath on her own.  What a miracle.  She was moving through this way to fast.  Everyone was surprised, but they had to give her more meds to keep her down.  They did not want her overloading herself. Look at me, I am going to pull through this, don't you worry.  The nurse has informed us that a blood clot has formed on top of her heart. Not to be alarmed just yet.

Sept 12th

Doing so well, they are going to close her chest today.  They attempted, cleaned out the blood clot and closed.  SUCCESS!!!  We are now one step closer to complete recovery. In a few more days she will be sent to 6East to step down recovery.  Last step before coming home.  Can't wait!!
 
When Mikayla was finally sent to step down, we breathed a little relief.  For the next two weeks her biggest challenge was to figure out how to eat.  All this time she had been on a feeding tube that went through her nose. She didn't know how to take a bottle.  I figured this would be rather quick, but I was wrong.  I couldn't believe that medically she was perfect, the only reason we had to stay now was to eat.  So it began, everyday there was a little marked improvement, not much.  When could we go home?  I bugged the nurses everyday.  Finally on Sept. 27th we were told we could take her home the next day. YEAH!  Kevin and I stayed in the hotel next door to the hospital. The next morning we rushed to get her.  When I walked in the nurse told me she is not going home today.  WHAT...are you kidding.  A cardiologist came to us to explain during the night Mikayla had experienced some PVC's in her heart. What does that mean?  I just wanted her home, it has been way to long.  So off we went without her again.  That was extremely depressing.

 Sept 29th

We got a phone call early in the morning.  They shouldn't have kept her.  Everyone with a heart defect experiences PVC's.  It's fine to come and get her now.  I couldn't wait to get back to Boston.  This part of the journey is finally over.  We said our good byes to all the nursing staff, and friends we made along the way.  See you again.  Packed her up and off we went.  It was hard for me to fight back the tears of joy as we walked out of that hospital.  We can now start our family of four.  Back to some sort of normalcy we go.

Since we have been home there has been many of doctors visits.  Feeding her is still a chore, but not to bad.  It is now December 16th and she is finally drinking 4 oz. at a time.  Weighs in at 9lbs. 9oz..  Weight gain is an issue for all cardiac babies and children.  We have also run into a lot of reflux  problems.  She is on two medications for that called Reglan and Zantac.  She also takes her Lasix twice a day.  She has had two episodes of crying, turning completely blue and passing out.  SCARY!  Even more scarier, the other day I was giving her meds when she choked, stopped breathing and lay lifeless.  Thank God my mother was there.  She called 911 and I turned her over and slapped her on her back.  Everything turned out just fine.  She certainly is keeping us on our toes.  We head back to Boston on the 18th to see if she is ready for her stage 2.  I will continue to update as time goes on and surely with the next surgery.  For now from our family to yours, hope everyone has a very Merry Christmas, happy holiday and healthy New Year.

 
Love Kevin, Jennifer, Kelsey and Mikayla.