Memories in Stanford's NICU

In this blog post, I wanted to capture some of the memories we had with Ellie in the NICU. We tried our best to spend as much time as possible with Ellie while we were there. While she had 24/7 care, I'm glad we were able to give her as much of a "home experience" as possible! We held her, sang to her, rocked her, changed her diapers, gave her a bath, played with her (we had finger puppets that my dad had purchased from a cute store in Visalia), etc... And of course, I nursed her throughout her entire stay! Morning and Night!

The above picture was actually our first family portrait!

Daddy's Little Girl! Notice the privacy screens behind him - those screens were not only good for nursing privacy, but they helped me stay sane amidst the craziness of the NICU. I got to zone into Ellie's world behind those screens...

This picture was actually taken at Kaweah Delta's NICU. I was allowed to nurse Ellie before she was taken by leer jet to Stanford. The blanket covering her was given to me there by the nurses who told me to do all that I could to make it smell like me. It traveled with her on the plane ride and was there with her when we got to Stanford later that evening.

Thank goodness we got this picture on the Iphone. So many of our family shots from the week were lost to us when my camera got stolen, but I'm glad this one was not! Mimi Cindi holds her granddaughter!

These next two pictures are of PopPop Ron holding his granddaughter. This first one is from Kaweah Delta, and the one below is from Stanford.

Ellie looks so content here - she was just given this little duck blanket - compliments of the Lucile Packard Children's Hospital. All NICU patients received one, and it helped to brighten up her pictures - that and the big pink bow!

I just couldn't resist taking this picture!

Burping time!

This one is actually quite funny to us. Ellie had just gotten her chest tube out, and before it was taken out, she was given some morphine to take the edge off the pain. We call this one: Drugged up Ellie!

Jeremiah and I both took turns taking pictures with our beautiful and alert daughter!

This is me by her bedside - my regular place for 10 days!

These two pictures are from the first time we gave Ellie a bottle with my pumped milk. I'm so glad she took to the bottle during this time of recovery when I could not nurse her!

Here Ellie is sleeping exactly like her Daddy sleeps!

This was taken after our first time playing with her finger puppets. Jeremiah had a lot of fun introducing them to Ellie - and he wore her out!

I loved the peacefulness of this picture...

Ellie - The Miracle Story

This blog's purpose is to share the miraculous story of Ellie and all she went through. It begins with Dr. Sine, our pediatrician that was recommended to us by my midwife who I've been a patient with for the past 3 1/2 years. We had visited Dr. Sine's office about one month prior to Ellie's birth for a consultation visit and were so happy to know that he would come to the hospital to personally examine Ellie after she was born. Other pediatricians I had contacted would not do that. We had shared that day about Jeremiah's vasovagal syncope issue and about the scariness of what happened to his heart during the times that the nerve is triggered. Jeremiah had asked the doctor if he thought it could be genetic. The doctor wasn't sure but seemed interested enough to find out. Well, after Ellie was delivered, we actually had to put up a little "fight" at the hospital to get them to contact Dr. Sine so that he could come in. We were unable to do this ourselves because Ellie was born on a Sunday and the doctor's office was closed. The argument from the hospital was that the hospital's pediatrician had already examined Ellie... interesting how she didn't find anything wrong with her heartbeat when she checked it. The night nurse was kind enough to make the phone call to Dr. Sine, and he came the following morning at 6AM - and he heard her irregular heartbeat immediately. He said that the reason he wanted to check things out further was because he had remembered the conversation we'd had with him about Jeremiah and his own heart issues an entire month before! Well, Dr. Sine happens to work with and be good friends with Dr. Anna Coll, the first female cardiovascular graduate of Stanford University - how she wound up working in Central Valley is a crazy story! Dr. Coll's friend from Stanford, Dr. Miyake, happens to be 1 of 120 cardiovascular rhythmic specialists in the nation - and she is 1 of 2 of these specialists at Stanford. Dr. Miyake was forwarded Ellie's test results (results from an EKG and a 12 hour harness test - a bunch of wires that were hooked up to Ellie on her 2nd night at the hospital). It was Dr. Miyake who made the call to fly Ellie to Stanford. So many miraculous connections!

The ride to Stanford was pretty horrible for Jeremiah and I - it was a long drive, and we didn't arrive there until 1:30AM - but Ellie was already situated in their NICU Cardio department, and I was able to nurse her as soon as I arrived - absolutely amazing! She was monitored that entire evening and the next day by the specialist doctors, and by the end of Wednesday, we knew that she needed a pacemaker. Her heart chambers were not working efficiently, and sometimes her heartbeat got way too low. This condition is called heartblock - something that only 1 / 20,000 newborns are born with. We learned that the condition would never improve; it could only stay the same or get worse. We weren't willing to take that risk with our baby girl. So surgery for the pacemaker was scheduled for that Saturday morning, January 28th, 6 days after Ellie was born. Thankfully, my mom and dad traveled from Visalia to Stanford, and Jeremiah's mom and Steve made the long 8 hour trek from Long Beach. They were with us through the weekend and offered invaluable support. I was able to stay by Ellie's bedside whenever I wanted to - which was always - and I was able to nurse her up until the morning of her surgery. I was only able to resume nursing her after her chest tube came out - so I had to wait until Thursday for this to happen! That was a horrible wait for me - I felt so useless as I watched our little girl lay in her bed with a million IV wires connected to her. One amazing nurse named Georgia, however, surprised me on Monday night and placed Ellie into my arms to nurse - she wasn't supposed to do this, and because of all the wiring, the whole procedure of getting her into my arms, nursing her, and putting her back into the bed safely took over an hour. I learned later that this was quite a risky ordeal because Ellie's chest tube was still in place - but the nurse had been working in the NICU for years and years, and she was confident in what she did. It was one of those amazing gifts that God gave to me there in the NICU - surrounded by fluorescent lights, lots of nurses, lots of alarms going off, lots of newborns in sad conditions... not easy to be a part of that atmosphere day in and day out. I slept in the hospital every night and Jeremiah joined me fully for the second week. We were thankfully given a private room to sleep in after my camera had been stolen by a girl that we had been sharing our original room with.

The following pictures are of Ellie after she went through her pacemaker surgery. Thankfully, Ellie was considered a NICU wellbaby - because other than needing the pacemaker, she was and is in perfect condition. I was told that because she nursed from moment one of her birth, and because she was a full term baby, she was able to recover so quickly from the surgery. Well, it might have been a quick recovery for sure, but surviving over 10 days in the NICU at Stanford was not easy. We met families that would be there for months, so we realize the blessing given to us when we were discharged right before Ellie's 2 week birthday, but we'll never forget the emotional roller-coaster ride that was our lives during this time.

Perhaps through the following pictures, it can be understood why Ellie was so good at her first doctor appointment yesterday. While putting stuff on her bellybutton to prevent infection, Dr. Sine (her lifesaver) commented that she was handling the procedure better than most babies (because she didn't cry at all). I said "Doc, this is NOTHING compared to what she went through." Just take a look.

This is the chest x-ray taken after Ellie's surgery - you can see the pacemaker on the bottom right, and all the wires hooked to her heart. But look at how perfectly her ribs and bones are formed!

This is a pacemaker - and this is what was placed inside Ellie.

The following pictures are of Ellie after her surgery.

The breathing tube

Thank goodness for the pink bow that my mom bought for her. It definitely cheered things up for us, and we kept it on her every single day.

Her breathing tube was taken out!

Our Ellie is a true miracle - her little body underwent so much during her first 2 weeks on earth - and as Ellie grows up, we will always let her know about the amazing blessings that God gave to us all in helping to save her life. She needs to be examined at Stanford every 6 months for the rest of her life, so Ellie will always be made aware of her miraculous story - and of all the amazing people involved - people who helped her get treated properly, and who helped her heal and recover perfectly so that she could be taken home by her adoring parents whose lives have been forever changed in such a beautiful way!