Esther's First Year

Thanks for visiting Esther's Story!  I hope you will find inspiration, encouragement and enjoyment as you read about her amazing life.  For those who are here for the first time and don't have time to dig through all the old posts, I'll give you a brief fly over of her first  year here.

We were surprised to find out that we were expecting again, our 11th baby at the old age of 45 years old!  The timing of this pregnancy was not exactly what we would have chosen, as we were building a new home!  But we knew that this precious baby was God's will for us and was in His perfect timing.  I knew in my heart that this child was meant for our family and that God had purposes that we knew not.  We chose the name Esther after we knew she was a little girl, remembering that Esther's life was one of purpose - that her life was "for such a time as this", and that our little girl was sent to us for some great purpose.  We had NO idea!

Esther was born just after midnight on September 20, 2008, with my husband, Daryl, my daughter, Jessica, a midwife, her assistant, and a female EMT in our bedroom, with 4 EMTs waiting in the hallway and a paramedic on his way to our home.  We had called 911 after I had started to hemorrhage during labor.   Esther was born easily, but she was quite blue.  She was laid on my chest and we were doing the usual cooing and talking to her, but I noticed that she was not pinking up or breathing/crying normally, so we started rubbing her vigorously hoping to get her to breath better.  Soon she was feeling very cool and turning a dusky shade of gray, and I knew she was in trouble, so I told our midwife to take her and check her out.  She was not OK.  The midwife called in the paramedic and over the next 15 minutes or so they tried everything to get her to breath well on her own, but nothing worked for long.  So quickly my precious baby was wrapped in a warming blanket and taken out of my bedroom on the shoulder of the paramedic.  I asked our midwife on her way out the door to go in the ambulance if she thought Esther had Down Syndrome (Trisomy 21) and she said that she thought that she did.  Like an episode of Twilight Zone, a new reality was beginning for our family.

The next 30 minutes were an eternity as I waited to hear from anyone that she had survived the trip to the hospital.  Finally, that phone call came.  Daryl told me that she had been swarmed by nurses and doctors when they got her, and that she was under an oxygen tent and was stabilized.  He also confirmed that the doctors thought that she had Down Syndrome, but that they would do a test to confirm it.

The next 3 weeks were a time of learning a whole new world of relying on God's for His grace to survive from one minute to the next, mentally adjusting mentally to the idea of raising a child with Trisomy 21 (T21), learning about the syndrome, monitoring oxygen levels, heart defect terminology, echo cardiograms,  tube feedings, daily feeding goals, sleeping anywhere, pumping breast milk for Esther and loving her desperately.  The diagnosis of full  T21 was confirmed as well as the presence of both a VSD and an ASD.  

By the end of three weeks she wasn't doing better, she was getting worse, so the decision was made to send her to Seattle Children's Hospital.  After we were settled into the NICU (Neonatal Intensive Care Unit) they set to work to find out what Esther needed in order to go home. They were hoping that she would be able to wait to have her heart repaired until she was at least 6 months old.

She had a trial run out on the floor after the first week, but she lost ground and was back in NICU after a couple of days.  They tweaked her medications, and added some new ones and sent her to the cardiac floor for the next trial.  We spent one week there and she was finally ready to go home, but only after I had learned to do all her care on my own - tube feedings and 7 different medications given on different schedule around the clock.  It was challenging, but I was willing to do anything at that point to get her home to our family!

Adjusting to being home was tough.  I rarely left my bedroom as caring for Esther was all consuming.  We were also making weekly trips to her local doctor as well as bi-monthly trips back to Children's to make sure her heart was doing well and that she was gaining weight.  And she was!  When she was born she weighed 7 pounds 10 oz, and when she arrived at Children's she weighed 8 pounds even, and when she left Children's she weighed 8 pounds 7 oz.  It took her 5 weeks to gain barely over 1 pound.  After 4 1/2 weeks at home she was nearing the 12 pound mark (they like to see babies weigh at least 12 pounds before they do open heart surgery).  

At her cardiology appointment at the end of November, her cardiologist told us that she thought that Esther would need to have her heart repaired by March.  This was very hard news to hear, especially as our oldest son was scheduled to deploy to Iraq sometime in March.  But even that was over estimating things for Esther, as we soon found out.

Over the last week of November, Esther contracted signs of a cold, and this cold was a huge challenge to her poor little body and she went from healthy looking to bloated quite quickly as you can see.

After spending one night at our local hospital, she was taken by ambulance to Children's.  She had contracted some kind of virus and it was making it impossible for her to maintain her health unless she was on Lasix (a strong diarhetic that helped keep her from building up fluid around her heart and in her lungs) via IV.  The next two weeks were a whirlwind of discharges and re-admits - each home trial only lasting overnight.  By the middle of December and her second re-admit at Children's, we knew she was there to stay until her heart was repaired.  But it took a while.  The virus was not easy to beat, and we nearly lost her once when her IV went bad overnight - Lasix + diarhea + blown IV = severe dehydration.  After a few days in the NICU again, she was again on the floor trying to kick that virus.  Several times they scheduled her surgery, only to postpone it as she was still sick.  On Christmas Eve she woke up with blood and pus coming out of her ear...an ear infection!  Finally they put her on antibiotics and she began to recover.   

The next week was a busy one - preparing for Christmas with our family at The Ronald McDonald House and enjoying the new things Esther was learning now that she was feeling better, like smiling:

Just after surgery, Monday afternoon

Esther's heart repair went exceptionally well.  She was in CICU (Cardiac Intensive Care Unit) for a few days, then back to the cardiac floor for a few more days.  Her surgery was Monday morning and we were headed home with her the following Friday:

Friday Morning, fresh from a bath and ready to go home!

Once she was home, she was a new baby.  Within 3 weeks she no longer needed her feeding tubes, and it wasn't long until she was down to just thyroid medications.  It took her a few months before she started really gaining weight, but once she did, she thrived.

She started with physical therapy just 4 weeks after surgery, and then we moved her to occupational therapy once there was an opening.  She had to learn so much, but she really tried hard.  She was motivated and loved all the attention, well most of it anyway!

As summer came and went, she was learning to roll over and sit up in a chair with support.  As her first birthday approached she was definitely on the super chubby side and full of character.

So that's Esther's First year.  It was a long year, we learned so much and God showed Himself to us like never before.  Would we have chosen to raise a child with T21?  No.  Would I do it differently if I could?  Definitely not.  She is a blessing to our family and raising her and learning to help her learn new skills has been a wonderful experience.  She is a happy little girl who rarely complains and love to give hugs and kisses, and who wouldn't want that around?

To read the rest of her story, start here!