May 25, 2006 was met with joy, excitement and overwhelming love. The birth of a child puts life into perspective and requires a little prayer and thanks to our Heavenly Father. We left the hospital with our little girl energized and excited for what was to come. 24 hours after her birth we were scheduled for her first doctors appointment. "Easy peasy" I thought to myself, "we'll be in and out and home before dinner". The Bilirubin test came back a little high, no surprise to us, we were both jaundice. We were actually expecting this. What we were not expecting was a full two weeks of daily doctors appointments, 24 hour biliblankets and daily heel pricks (sometimes for vials of blood). It was getting a little time consuming. Yes, I was indeed thinking of all of the time we were spending in pediatrics. I had little concern because don't 50% of babies have jaundice? I had no idea.
Two weeks into her ordeal while on a biliblanket 24/7 her levels came down (sigh) we both thought we were in the clear. We were told that bili levels follow a trend, when they begin to fall they do not rise again. We were introduced to a very amazing man when her levels did indeed rise again. We believe that Dr. Alter is more than likely one of the BEST neonatologlist ever, and arguably one of the best doctors Kaiser employs. It was explained to us that she was days away from Phenobarbital to speed up the production of her liver. But once she starts the drug she will NEVER be able to stop it because it can cause a seizure and other possible side effects.
Thankfully we met Dr. Alter at the perfect time. I was at my breaking point and the round the clock care was a little overwhelming. There was always someone here to hold Camryn and insure her bililights were on. I was strict at best, I even woke my mom one night when she had Camryn and in a sassy attitude exclaimed, "your sleeping!".
Then came the day that Scott and I will never forget. Another routine doctors appointment unfortunately not so routine. Dr. Alter was away on vacation and had insured we would be seen by someone very familiar with our case. Little did we know there was a team of doctors familiar with our case. This appointment included three vials of blood via heel prick (liver function, standard bilirubin and another billirubin) , waiting in a small little room and finally meeting face to face with an excited intern doctor. This is the doctor that spilled the beans, so to speak. He explained that there was a panel of doctors familiar with Camryn.
I envision 10 white coats gathered around a long table each with our daughters file in front of them. My mom insures me I wasn't too far off. See when Scott had to finally return back to work my mom had the task of being my second set of ears. Dr. Alter is a fast talker by nature and it is hard to see clearly when you have to be so strong. This part gets a little fuzzy. I know we were expecting positive news because Scott had a lacrosse play off game and we really wanted to go. We were hoping Camryn could be off of her lights for the time it would take to drive to Newport Beach, watch the game, have a bite to eat and drive home. She was at least three weeks by now almost a month we thought, "is this a taste of what was to come."
Her levels were steady at 15 and we were told the theory is she might have what is called Crigler-Najjar a rare genetic disorder. We were actually told to google it. Google it? are you serious. We left with no idea of what to expect.
Little did we know soon we would breakdown and try with all of our might to overcome a sea of tears. We held our little bundled baby a lot! We promised ourselves we would will her to health.
That is just what we did. we battled Cam's jaundice for over three months with no real sign of what was to come. Her levels dropped to a 7, amazing.
Dr. Alter never worried us he reassured us, comforted us and knew when to hold things back. Information overload is NOT his style. He assured us you could live with a 7 Bili level and we would know more as her first year went on. Scott and I cried a lot, prayed even and became closer because of Camryn's ordeal. We loved with all we had and we still do. Love is what works for us, for our family and we really can't say it enough. We are looking forward to Baby A's arrival and as I reflect on my little ones ordeal bare with me. There is more and I am bound to share it. Maybe I just need a good cry, don't we all.
Sweaty and tired after a LAX game all he wanted to do was hold his baby:
I love this man!
We now see how 'yellow' she was, at the time I thought she was tan like daddy: