Friday, May 23, 2014

Mother's Day

Warning: This is long, but mainly for my records

To say that my Mother's day celebration was a little sucky is being kind.  This year, I did what probably every parent has nightmares about.  I spent it in Children's hospital with my two month old baby girl, and husband of course.
HIDA scan, she was laying on a warm pad and slept the whole time!

Let me start from the beginning.  Thursday May 8, I had taken Tessa to the Dr. for her routine two month well visit.  After looking her over her pediatrician thought she looked a little bit jaundice.  He wanted to run a simple blood test to check her biliruibin which I of course was ok with.  He said since he didn't rush the pickup or anything that he would get the results on Saturday and call me.  Now, my pedi often says he will call and never does.

I was sitting at my house planning a baby shower, when a message popped up on my phone.  No missed call, just the message.  I didn't think anything of it since I didn't know the number.  Once things slowed to a stopping point in party planning, I decided to listen to the message.  It was my dr.  it went something like this.  " Hi Lindsay, this is Dr. Daniel, I need to talk to you about Tessa, please call me back, this is my personal cell phone."  MY heart dropped.  As I was listening to it, another message came in. It was him again.  I immediately called him back.  He explained to me that her bilirubin was slightly elevated and that he had spoken to the GI at Children's and they wanted to admit her to run more tests. Insert tears from me. He said that they had beds available and they would be calling me soon to tell me when to come in.  He said if they hadn't called by 4 PM to call him back.  This was at like 11:30.  I immediately went into panic mode.  All of my local babysitters for the boys were tied up, Adam was golfing, and I was freaking out.
Her first bottle in about 14 hours

So of course we wait until 4 PM, when no one calls, I called him back and he said to give them two more hours.  We wait.  No call, at 6 pm, Dr. Daniel calls and asks if we had heard anything.  Nothing.  So he calls the hospital, by 7 we were called and told to head that way.  MY sister had called out of work to come and watch the boys.  We got to the hospital a little before 8 PM.

We got into our room quickly, and had the regular admitting stuff going on.  By about 8:45, Tessa was tired and cranky so we started feeding her.  Well of course about the time she finishes her bottle, someone comes and says she isn't supposed to eat because they are going to be doing a sonogram and she has to be without food for 4 hours.  WELL GREAT!  Would have been nice of someone to tell us that.  It ended up not mattering, because they were not able to get us into the sonogram until 4 AM anyway, so 8 hours after her bottle.  She was exhausted and slept through the whole thing.  One tricky part about the hospital is that she had to sleep in the bed IF we were asleep.  She didn't sleep in a crib yet, so that wasn't happening, so Adam and I took turns holding her throughout the night.

Sunday morning, Mother's Day, came and the dr. did their rounds saying that everything came back normal on the ultrasound, but they wanted her to be tested for something called Biliary Atresia.  But that test couldn't happen until Thursday, because she had to be on phenobarbital for 5 days before it.  They were not going to discharge us until Monday though, because as an inpatient it's easier to get on the schedule.  So we knew at about 9 AM that we would be staying another day for  no reason other than to get on the schedule for this scan.  Now, the Dr told us to not look up Biliary Atresia on Google until we knew that was it.  YEAH RIGHT.  Lets just say, I spent mothers day thinking my baby was going to need a liver transplant, and spend her life in and out of the hospital.  Shouldn't have looked.

The meds they gave her made her sooooo sleepy
They got us on the schedule for her scan on Wednesday.  It came back normal.  Thank God.  But that still left us wondering what was going on with her.  Jaundice in a two month old is not normal.

Wednesday I went to the GI clinic for her follow up.  They told me she looked great, not as yellow, and seemed over all in great health.  The dr went out of the room to review some of the blood tests they had run and she came back in.  She said " Well, we finally got all the work back and we have a diagnosis."  She has Alpha -1 Antitrypsin Deficiency.  Though not life threatening, it could mean a tough life as she gets older.  She will likely get emphysema, and we are all hoping she is in the 80 % of kids who do not develop childhood liver disease because of this.  It is a Genetic disease, many people don't know about it.  Apparently though, adam and I must BOTH be carriers in order for her to have it.

tiny IV in her foot:(
The Dr. is optimistic that she will do great and not have to worry about anything for 40-50 years, as her bilirubin is going down all by itself with no medication.  They did put her on this new prescription formula, that costs an arm and a leg but if it will help her out then well great!  Even better is that our insurance is paying for it!;)

So we knew that when we had a third baby we were tempting fate.  Dylan and Graham were such easy babies, we thought for sure that she would be a crier, or never sleep or something.  Well, she sleeps great ( in her crib now, we took the opportunity of her being drugged up and sleeping great at the hospital to transition her to the crib, where she is now, for the most part, sleeping through the night) and hardly ever cries, but well, she probably made me gain a few grey hairs in the last two, very long weeks!

1 comment:

Meredith said...

So sorry to hear what a rough few weeks you guys have had. We're thinking of you guys and praying for sweet baby Tessa.