Odessa and her Health

It’s time to update the blog.

I have to say that updating her birth story is going to be way easier then updating her current health status.  But it must be done as this is the story of our family and all parts must be included.  Well the parts that I feel will influence others. 

So after we brought Miss Odessa Dei home we were able to enjoy her for 3 days.  We were able to bring her to Tait’s office so that they could see her and they passed her around to everyone.  We were able to enjoy her 2 hour need to be awake feedings.  In which she would only eat 1 oz before falling fast sleep but in 2 hours she was going to be awake and waiting to eat again.  She went a couple of feedings where she would sleep for 4 hours and then want to eat when she woke up.  She was the sleepiest baby I had EVER seen.  She just wanted to sleep all the time and I had NEVER had a baby that didn’t eat 4 oz by the end of the first week we brought them home.  Well little did we know that these were all signs of trouble brewing. 

Tait, Nikolai and I were all on our way home on Thursday from Tait’s office Christmas party when we were talking about how orange Odessa was and the fact she skipped 2 meals.  We talked about how we would wait until Friday because that’s when she was scheduled to see her doctor the very next day.  But as we talked I think Tait could sense the concern in my voice and suggested we call the doctor and see if they wanted to see her today or schedule a blood draw today.  So we did.  And sure enough they wanted to us to go in and get a blood draw.  So we did.  Took the baby in and then we left.  They said if the numbers were high they would call us or whatever.  So we went on with the evening as if everything was fine.  Well at 9 pm (my phone had died) my phone was finally charged and we had a missed called from the doctor.  So Tait answered the phone as he noticed we had missed call and it was the nurse stating she was expecting us to come to the hospital 3 hours ago but they couldn’t get a hold of us.  Well we loaded up the kiddos to take them to Helen’s and packed a few things to take to the hospital because both Tait and I were ready to spending the night. 

So she was she was put in the sun lamps.  She did great all night.  We didn’t sleep really well b/c Odessa kept trying to take off her blindfold.  But after 12 hours her numbers were improving.  Well Dr. Lorenz came in and checked her out and said that she has a significant heart murmur.  So he said he was going to order an Echo for her heart.  So we knew we were going to be home sometime later so it was okay.  Well the Echo started and stopped twice b/c there was only one tech there and he kept getting pulled in different directions.  Well they finished the Echo which the Echo was about 4 hour total long.  So after they got that all done we waited for the doctor to come and tell us what the results were.  So we waited and waited.  Well it was about 6 pm and the doctor came in and said that he wanted to talk to both Tait and I but Tait had stepped out getting some supplies b/c we figured we would be in the hospital another night.  Well the nurse wouldn’t tell me ANYTHING.  So I called Tait and told him that he needed to come back right now b/c the doctor wouldn’t tell me anything but wanted to talk to us both at the same time.  So we knew it was going to be horrible news.  Well Tait and I had both called Helen to let her know. 

The doctor came in and said that she has a heart defected called Truncis Arterious.  This basically means she has one artery in her heart instead of 2.  It’s a VERY uncommon issue and that they needed to take her right away down to Riley Children’s Hospital.  Talk about a moment frozen in time.  So they said that it would be a couple of hours but Riley was on the way to come and get her.  So we waited.  Finally they got there.  We all took turns holding the baby and telling her that everything was going to be okay and that we would be in Indy shortly.  So they came and got her.  Tait and I made a quick trip to our house to get clothes and anything we might need.  And we were off to Indy.

By the time we got to Indy it was 11:40 pm and we were so beat because of all the stress of the day.  Tait and I tried to answer questions as best we could but we were so tired it was hard to kind of even concentrate on what they were saying.  They started an Echo again and so Tait and I tried to wait for them to tell us what was going on.  But sleep quickly overtook us and we slept until the next morning.  The next morning we found out what we were dealing with.  We found out what the matter with her heart was and what they needed to do.  This was Friday but with everything going on and there were no surgeons assigned to anything yet and so they said that we would keep her stable and find out what was going to happen, but Monday would be the day we would find things out.  So Tait and I were just waiting and watched our baby go from eating bottles and awake to having her bottle feedings taken away.  She was still pretty sleepy but they were too concerned about it yet. 

So the weekend went by and little changes here and there but overall she was stable and doing well.  Well on Monday they announced her surgery wouldn’t be until December 29^th which was an entire week away.  Tait and I were so disappointed because we were told that she has to have her surgery to survive but they were willing to wait until the 29^th to fix it b/c of the Christmas holiday and staffing issues. 

So we were at the mercy of the doctor’s.  So Christmas Eve rolled around and we had decided that we needed to go home for a couple of hours to see the other kiddos at home.  We knew Odessa was going to be fine and we hated leaving her but we knew that the other three really needed us b/c we had heard that they weren’t doing very well with what was going on.  So before we left they moved our baby from ICU to “step down care” b/c of staffing issues and nurses and since she was doing so well that moving her wasn’t going to be an issue.  So we moved all of our stuff over to the new room and we pressed forward with our plans.  We went home and spend Christmas with the other kids.

Santa came and went at our house.  The kids did get several things for Christmas.  During the course of the night we had gotten two separate called about Odessa.  The first call was regarding Odessa needing some more blood b/c her blood oxygen levels were going down and they wanted to help her heart out.  So they did that.  Well after we got another call telling us that Odessa was moved back to ICU b/c her stats weren’t improving and they needed to watch her better.  So she was moved and they moved all of our stuff before. 

Then on our way home back from Christmas they called one more time and said that they had to sedate Odessa.  They said that the reason why is because her heart has been working way too hard for her body to take and so by sedating her and intubation her it would allow them to control her air intake and be able to medically help her heart.  So we got back and walked in our little baby asleep and on a ventilator.  It was so hard to see and watch her.  She is so little had has had some many pokes and prods and it was downright scary to see her in this condition.  So we talked to the doctor about her and all of the changes they have had to do and the fact it looks like she is slowly dying right in front of us because they haven’t done the surgery.  We were told that that isn’t what’s happening.  Yes she needs the surgery but she’s not dying.  They need her to stay very calm and keep as little activity as possible to help her heart.  When she is moving around and awake it makes her heart really work but her heart isn’t able to get the oxygen rich blood to her organs b/c it’s just not working the way it should.  So the last couple of days we have had ups and downs but she is doing well.  Her stats today are really good.  She has been removed some medication and her stats are still good.  They had had to do an Arterior Line for blood draws they had to move the Central line b/c it was leaking.  And they added another IV because they said that they will need it when she has surgery on Monday.  Everything is just leading up to MONDAY.  It’s like the date that just won’t come!  We just don’t want anything else to happen before Monday so that she won’t have any delays. 

We have spoken to the surgeon about the surgery and it looks like what we will be dealing with.  It’s SCARY to listen to all the good and the bad for Monday.  It’s scary to think that they won’t be sealing her chest back up (her skin will be closed but her bones will not be sealed) until after New Year’s which is HORRIBLE b/c of the freaking holidays I hate holidays.  It is official I mean everything at the hospital is depended on scheduling it is so frustrating.  I just want the baby to be on the mend so we can go home and heal and put this behind us but it’s like we are facing this big schedule that has to give everyone time off b/c of the holiday… well what the hell I would like to be home and I can’t be b/c my baby is IN THE HOSPTIAL!  It’s just frustrating.

We found out also that this won’t be Odessa’s only surgery.  She will actually have up to 4 open heart surgeries throughout her life.  She will need additional surgeries to help her with the new artery (conduit) that she will have installed.  After the surgery she has on Monday they will do another one sometime between the ages of 2-8, then again between the ages of 12-18, then again sometime in her late 20s it will depend on how fast she is growing.  The cardiologist will be her best friend growing up.  She might not be able to have children in her life it will depend on how her body and her cardiologist.  So we’ll see what happens.  We are just wishing that the surgeries are over and that she is on the mend but time just doesn’t work the same way here.  It’s so frustrating and scary. 

Tait and I talked today about missing the other kiddos but we know that this is just going to be a blink in the eye of time.  So we just need to do what’s best for all of the kiddos and not make any big decisions until we can get Odessa healthy and home. 

Tait and I have been staying at the Riley’s Ronald McDonald House.  We stayed there last night and were really wonderful sleeping in a bed.  So hopefully we can continue to get good sleep and remain as a support for Odessa and get the baby home. 

So I won’t update again until after the surgery.