Happy New Year!

We arrived home last night in time for the celebrations.  So glad to be back with family.  Grateful for the Ronald McDonald House and for Heather for great company and baby-caring skills.

I'm sitting here at 12:15 a.m. listening to fireworks and silently laughing.  The fog outside is think and visibility is really low, the fireworks have been going or at least an hour and you can't see a thing, lol.

Ups and downs

Adelina seems to be feeling better, now we are just working on getting her on the right dose of blood pressure medicine, her diastolic is still higher than mine.  Her oxygen needs are still fluctuating a little too much and we are changing her feeds (more volume, less formula).  We hope to be home by Sunday but have learned not to expect too much.  Our Addy is really such a trooper.  She has thrown up a lot and put up with many blanket changes and baths.  She loves having her hair washed and still loves textures, she burrows her head into soft fabrics.  They brought in a swing and mobile and even tried out a few hand held toys.  We put a pacifier in her hand and she actually put it in her mouth the first time, the second time she got her fist but didn't seem at all disappointed :)  Adelina loves to smile and we love to get her to smile.

Because of Adelina's size she is outgrowing her shunt, which is normal, and is needing more intervention.  Her surgeon,Dr Eckhauser, is thinking that the next surgery will be scheduled around her three month mark instead of later.  We had hoped to make it as long as possible but it looks like sooner rather than later would be better.  She will be three months old on the 18th of January.

Yesterday they decided that because she throws up a lot it must be that she has a milk protein allergy.  I feel for anyone that can not have dairy products.  I went for one day without dairy, it's in everything (spaghetti sauce? yep!).  This morning we decided that that was not the problem, thank goodness.  Addy took thickened milk from a bottle yesterday and didn't seem stressed for the first time since her surgery.  When she is able to take more than 10 milliliters by mouth she can go back for a swallow study.

Back at the house on the hill

Yesterday Adelina was off oxygen, I checked her saturations and she looked good, two hours later we were on 2 liters of oxygen and twenty minutes after that on our way to the hospital.  Even on the way her needs were fluctuating and once we were at the hospital they had to keep adjusting how much she needed.  They don't know why she needs so much more help and she looks like she feels pretty crummy.  We now know that her blood pressure is high so she started meds tonight which means we will be here a couple more days while they sort it out.  Poor baby :(

Oxygen Saturation

Christmas day we kept noticing that Adelina was looking blue.  We'd check her oxygen saturation levels and they'd be within her normal range.  Finally, around eight at night I caught her dipping into the high 60's and knew that she had been dipping all day.   I turned up her oxygen to 1/16, then 1/8, 1/4 and finally 1/2 a liter (we even went up to 3/4 for awhile).  The nurse practitioner on-call said that if she stayed at 1/2 a liter we would need to bring her into Primary's.  We waited and decided to keep a close eye on her all night and bring her in in the morning if she was still at a 1/2.  Because Addy has no oxygen reserves it can take a lot more oxygen to catch up so during the night she gradually went back to 1/16 and 1/8 depending on the time.  So here is the BEST part :)  This morning she kept sneezing and wouldn't take her pacifier.  All of the sudden she sneezed out a large hard lump of mucous.  It had been blocking her airway.  Guess who's oxygen free???  :)

Merry Christmas!

We were given a photo session with fotofly for Christmas, this is one of my favorites :)

It's happened...

Wednesday I started to notice that Adelina's oxygen saturation was sitting between 75% and 77%.  She should be between 75% and 85%.  Then, she started to sit right at 75%.  By the evening she was going between 74% and 75%.  I was trained at the hospital on how to use the oxygen but had never actually turned it on.  I had also never hooked the tube to the tank and I couldn't hear it when it was on.  Thank goodness for the nurse practitioner.  I still went to bed frazzled.  We were able to get everything running and with the lowest setting we are now sitting between 77% and 78%.  The sad part is that we only expect to go up from here and because the tank is not light our mobility has gone down.  I hope that we will get more used to it so that Addy isn't always stuck in the same room.  Who am I kidding, I don't want to always be stuck in the same room and I don't want to limit holding her because of her tubes.  I put her to bed and she was working so hard to get the oxygen off then with one quick swipe she'd pulled her feeding tube out.  I have a feeling she is going to have a LOT of tape on her little face.

We went up to PCH and were told that she is growing and the shunt is narrowing so the oxygen doesn't surprise them at all.  I was hoping that they would say we had overreacted and she didn't need it but obviously that didn't happen.  We are hoping to make it to four months before she needs more intervention but right now she is only nine weeks old.

Early Intervention

Primary Children's sets you up with Early Intervention right away so when these two sweet ladies came to visit I wasn't sure what to expect.  The first visit was to decide if we qualified...we probably could have verified that over the phone :)  Today they came again to establish a plan of action.  We are going to work on getting food by mouth and another swallow study.  Her occupational therapist has 30 years of experience so I'm counting on it to help us learn to eat.  We take so many things for granted.  I feel like the longer she goes without eating the harder it will be to teach her.  Babies with HLHS spend very little time on their bellies so we are going to work on strengthening neck muscles without putting pressure on her heart.  If she's asleep and I recline too far she'll fuss and wake up until I sit up again.  Adelina has pretty good head control for her age and considering all the tubes that have been stuck to her head and neck.  We are so grateful that she is doing so well.