I remember the day I found out I was pregnant - January 3, 2003.  After five positive home tests, I called and got an appointment to have them confirmed.  I was shocked when the nurse said that the test was positive! I was due mid-late August. My heart fluttered and I wanted to cry!  I was going to have a baby.  I wanted to scream and tell everyone, but I was scared to jinx things.  I kept things quiet for a while, and by April, it was no longer a secret.  I had my routine OB appointments.  My first ultrasound was in mid March, and the tech said she couldn't see all that she needed to, including the baby's heart.  That scared me because my family was devastated just 10 years before when my niece died at birth of an undiagnosed heart defect.  I had to wait another 4 weeks for my next ultrasound.  Those four weeks were so hard on me, but when that day arrived, we were able to see 4 little chambers.  Relief, right?   My OB sat down with me afterwards and said that the ultrasounds showed a healthy baby, but there was still a 3-5% chance of a heart defect involving the valves or walls, as well as a possibility of cleft lip, etc.  That was the usual talk-up, and after a quick exam, I was on my way out the door to prepare for the birth of my baby. 

I found out I was having a girl on August 5!!!!  My official due date was September 3.  It ended up being a very humid summer here in Vermont, and those last weeks were very uncomfortable.  I had an OB appointment on September 3, with no sign of labor.  That was ok, I knew it would come soon enough.  The next day, I didn't feel right, so I went to the office to get checked out.  My OB wasn't in, but the one that examined me said he felt I should have a caesarean that evening.  He called my OB to ask her opinion, and she agreed.  I was told to be at the hospital by 5:30 that evening - my girl was going to be delivered around 8:30!!!!

Cheyenne Cassandra was born at 9:18 that evening!  She was 8lbs 1oz, and had a head full of black hair.  I didn't get to see her until they moved me from recovery an hour later.  She was in my room with my family.  I held her and we took some pictures before everyone left for the evening.  I noticed her lips, hands and feet looked blue.  I asked the nurse, and was assured that it was "normal."  I nursed my new little angel for a while, but something wasn't right.  She was very fussy, and cold and blue.  The nurse took her from me only to bring her back because they couldn't calm her down.  I could see in their faces that something wasn't right, but nobody bothered to call the doctor to check her out.  It wasn't until the next morning that an experienced nurse checked her o2 sats and found them to be dangerously low.  There was also a murmur that wasn't present at birth.  I knew from experience that wasn't good.  Cheyenne was transported to FAHC, a bigger hospital about 40 miles from the one she was born in. I couldn't go with her, so my father did.  The pediatric cardiologist there did an echo and called me in my hospital room.  Cheyenne had some rare defect that would require three surgeries at Children's Hospital in Boston, and she would need to be transported there as soon as possible.  I was discharged long enough to go and hold her for a while and say goodbye.  I had to go back to my hospital bed once she was on the plane. Up to that point, that was the hardest thing I had ever done. 

Cheyenne's 1st stage Norwood

 

Cheyenne was transferred from FAHC to Children's in Boston on September 6.   I wasn't released until the next day, and I arrived in Boston on September 8, one hour before her surgery.  I was able to hold her and talk with the surgeon (like I heard a word he said).  I was assured that they would take care of her and do their best.  I let my angel go with them to the OR, and just 2 1/2 hours later, Dr. Mora, the surgeon, was out to talk to me.  He explained that they placed the Blalock-Taussig shunt, and that she was doing great.  I was so relieved.  She was back in the CICU, and I could go see her.  She was hooked up to so many machines, but appeared to be doing well.  While I was in the room, her heart suddenly stopped and I was whisked away in my wheelchair to a waiting room.  My parents had gone to the hotel next door to reserve a room for the night, so I was by myself until they came back.  They were shocked - everything was fine when they left.  It seemed like forever with no news, so I went to the desk and demanded to know what was going on.  Finally, a Cardiologist came out and told me that Cheyenne's heart was very weak and that they had to give her CPR to revive her.  She needed to be connected to the ECMO machine, and there was a chance she would never come off it alive.  My world crashed and I was a complete mess. That was the absolute worst night of my life.

The next day was bad.  She was bleeding internally, and they needed to go into her chest to clean it out.  She had received many transfusions in the night, and things weren't looking so good.  As long as she was on ECMO, she was alive and there was hope.

September 10 was a turning point.  Cheyenne's condition seemed to be improving little by little, and they were able to begin weaning her from ECMO.  Sister Carlotta blessed her that morning, and offered me words of encouragement.  That was the beginning of Cheyenne's slow recovery.

 

September 12 - Cheyenne was successfully taken off of the ECMO machine, and her heart was beating on it's own!   I was in awe of how far she had come in just a few days.  Her chest was still open, covered with a big patch, and she was still on the ventilator and a ton of meds, but she was improving.

September 15 - Cheyenne's chest was closed, and some of the meds were gone!  She was opening her eyes!   What a great feeling.

September 19- Cheyenne was extubated and breathing on her own again.   I was able to hold her and love her up.  Most of the IV's and other lines were gone.  She would soon be ready to learn how to eat.

September 26 - Giving her first smiles and flashing those pretty blue eyes, Cheyenne was moved to step-down.  I feel so good knowing my baby is going home with me in just a couple more weeks.

October 2 -  We were transferred to FAHC in Vermont to learn how to eat

October 17, 2003   My  miracle comes home!!!!!!!!!!!

Cheyenne's Stage 2 - Bi-directional Glenn

 

March 22, 2004

We headed to Boston with my sweet baby to have her second stage surgery.  So much had happened during her months at home.  She was coming along and growing like any other baby.  She was eating baby food, rolling over and starting to say ma-ma.  I knew I was going to have a hard time handing her over.

March 23, 2004

Cheyenne had to be at the hospital at 8:30 AM for pre-op testing.  She had an EKG, ECHO, MRI and blood work.  She was sedated for a good part of the day, and woke up quite hungry.  I spoke to Dr. Mora and he explained the procedure they were going to do.  They also needed to operate on her left pulmonary veins, which we found during her February cath in VT, were narrowing.  He said that things looked good for surgery, and she should have a better time and quicker recovery this time.  I brought her back to the hotel that night, with many mixed feelings about what I was putting her through.  I was so scared.  At least I had the next day to spend with her before her surgery on the 25th.

Cheyenne's Baptism

March 25, 2004

We arrived at 6 East, the cardiac floor of Children's, at 6:30 AM.  Cheyenne was baptized by Sister Carlotta shortly after we arrived, and she was taken away for her surgery just before 8 AM.  Dr. Mayer performed the surgery along with Dr. Mora.  I think it was about 1:30PM when Dr. Mora came into the surgical waiting room with a big smile- things went great!  She came through beautifully, and was up in CICU for us to go and see.  I had to let them get her settled, and finally was able to see her.  She looked so sweet, through tubes and IV lines.  My sweet baby was ok.

Post Glenn

March 26, 2004

Cheyenne had a great night, and to my amazement, she had her chest tubes out that morning! She was also extubated by noon, as the plan had been.  She was, however, waking up with headaches, so they gave her morphine to help take the edge off the pain.  She looked great, but was still pretty groggy.  Most of the IV's and lines were gone by the end of the day.  She was also put on oxygen because her sats were running in the 60's.  I spoke with a fellow before I left for the night, and he said they were planning on moving her to step down the next day, depending on her sats.  I just felt better knowing the worst was over.

Sleeping Beauty

March 27, 2004

A chest x-ray showed that her left lung was wet, and they started IV Lasix to get rid of some of her fluid and hopefully solve her sat problem.  She was moved to the floor at 4PM!!!!!   We got a nice nurse who explained to me that some of the Glenn kids have an oxygen requirement for a couple of days, and not to worry.  I was able to spend the night next to my baby and take care of her again!

On the floor

I Wanna go home!

March 28, 2004

Her sats were ok on room air, so she didn't need oxygen anymore.  Just a matter of eating and improving a little more before we would be able to go home. 

March 29

Our friends, the Campbells, came to see us.  Grace has HLHS, and she and Cheyenne were born the same day.  We were neighbours in CICU during our first stay at Children's and we have kept in touch since.  It was nice to see them again and have some visitors!

Lets get outta here!

March 31

Cheyenne was discharged at 10 AM, and we arrived at home around 4:30 in the afternoon.  So happy this chapter is done!