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.

busy, busy

Wednesday morning Adelina and I were up going through her morning routine of being changed and weighed when my poor husband started throwing up.  Illness is a real danger to Addy so we had already decided that I would go stay with my brother and his wife if anyone got sick.  So, I quickly packed up and left.   Wednesday night Adelina had a hard time settling down but I was finally able to l lay her down around midnight.  I dutifully got up through the night and added milk to her feeding bag.  When I woke in the morning she was all wet and I was feeling really bad that she had thrown up and I hadn't noticed.  I went to change her clothes and only then realized that we had once again fed the bed.  Sometime during the night Adelina had pulled her feeding tube out and in the dark I hadn't noticed.  She still gained 10 grams and luckily I was able to return home yesterday.  These pictures were taken one right after the other :)

Thursday morning our two-year-old went in for ear tubes, she had to be there at 5:45 am.  My sweet mom woke up bright and early and now our Lily can hear again... yay!  We notice that she still doesn't listen to where a person is, she just announces where she thinks they might be and runs there. Also, she woke up from her nap and after I asked if she wanted some popcorn, she repeated the word "popcorn" over and over again practicing the pronunciation.  Grandma asked her to say "pop" to get her to say it correctly and she just kept saying, "I don't want popcorn."

After returning home we had visitors from a birth to three development place.  It's hard to know if we should really add one more thing to our plates.  One of the ladies that came works on development while the other is a nurse and would like to work more on feeding.  There is a cost involved and so far Adelina is right on track other than eating by mouth.  She smiled at us much of the time they were here :)

Daddy/Daughter time

We gained!

Adelina weighs 4.74 kgs or about 10 lbs 7 ounces.  The nurse practitioner calls every Tuesday from the cardiac clinic but we have been hearing from one every couple of days due to a lack of weight gain.  Well, today she gained 120 grams (we need between 25-35 a day).  Now they are saying she may not need as many calories.  I asked what would happen if she continued to gain so well, assuming NEC or something terrible, the nurse replied "she'll be really fat." :)

It's beginning to look a lot like Christmas!

We've been enjoying all her smiles but finally took a picture.  So grateful for this little princess!

loss

Since before Adelina's heart cath we have been struggling with Adelina gaining less weight than we would like.  She has been retching and throwing up a lot of milk so we are trying different things.  First, we switched formula but it almost immediately got worse.  We went to straight breastmilk and it seemed to get better but she still needs more calories.  Now we have doubled the amount of zantac that she's getting and she is doing so much better, we are back to her original formula.  Can't wait to weigh her this morning, praying that she has put on some much needed weight.

Baby smiles

Daddy showed up last night!  We are so excited and so is baby Adelina, she gifted him with a huge smile when she saw him.  She loves to watch our faces and the kids have been going to great lengths to get her reaction.  So far we've been enjoying her grin too much to stop and take a picture but we will catch it soon :)

We are home, yay!!!

When we arrived at the CICU this morning Adelina had had a wonderful night, no more mysterious fever and no more need for oxygen.  Early yesterday evening she had been able to go off oxygen for an hour but then needed it again but by 3a.m. she was finally able to wean off of it.  I came in to a crib with a mobile and little toy attached as well as a stack of books they'd been reading and a couple of toys.  She had been engaging the nurses, smiling and cooing.  Adelina for the last two days has not been making eye contact but today wanted to interact.  We are so grateful that she is feeling better and know that it's due to all the prayers on her behalf, thank you.

Still in CICU

Our Adelina is having a rough patch.  She woke at 6 am with a fever of 103.  It took several hours but they were able to get it down, when I left the hospital they were giving her tylenol to bring it down from 100.  All the blood tests and cultures have turned up nothing.  She has been on room air at home but is now needing oxygen.  The combination of the fever and oxygen are keeping her in intensive care.  She just looks so miserable.  They've discussed possibly going home tomorrow but in the same breath sending us to the "floor." Praying that she improves with rest.

Ready for rest

Adelina's heart cath went really well!  We are so grateful for all the prayers offered on her behalf.  The narrowing ended up being a pretty big deal.  One side of the narrowing was around 80% pressure and the other 50% they should be the same or else her heart is working too hard.  Also, her gut wasn't getting sufficient blood flow.  I expected to get a call between 11 and 11:30 but they called at 9:45 to say they were done, what a relief :)  We also learned that she has another unique part to her heart that doesn't cause any issues but does matter for her next surgery.  She has two superior vena cavas, it's really rare.

Adelina did not like coming out of the sedation.  We spent all day trying to make her comfortable.  Her cries were heart wrenching, she was running a fever and her pupils were dilated.  Finally, at four o'clock they gave her Adavan and she's been sleeping peacefully ever since.

6 weeks post op

Thank you fellow heart mom for reminding me about our exciting day.  Adelina is 6 weeks post Norwood.  We celebrated yesterday for about 2 seconds before she went in for her heart cath but will continue to celebrate.  Adelina can now be lifted under her arms and lay on her stomach for tummy time.  We can also now recline in a chair while holding her (this has been the toughest to avoid).  So excited that we are six weeks out!

Night so far...

Bath.  Clean Clothes.  Hold medicine.  Change feeds.  It seems pretty simple, and it is but it's 4:35 am and I have had only a few hours of sleep.  Around 8:30 we bathed Adelina, she hated it and screamed until she threw up, all over herself :(  We ended up just using a washcloth to clean her up.  I then washed her hair, she LOVED it.  At ten, I filled Adelina's feeding bag with her regular high calorie milk.  At midnight it had to be changed again to milk only without added formula.  At 2:30 it had to be changed again to pedialyte and seven minutes ago all feeds were stopped.  Every time a bag is changed I add an additional 12 ml to account for the tube but they never seem to run out when they should.  Last night I added more just so she wouldn't run out early but, she still ran out five minutes early with just plain milk and thirteen minutes early with the pedialyte.  Oh well, I did my best.

Tubes

My wonderful mother took Lily in to the specialist and sure enough she needs tubes.  One eardrum isn't vibrating due to fluid build up.  I had started to question whether she would need them since she really has a large vocabulary for such a little girl.  "Gethsemane" came out of her mouth the other day.  It's her favorite song by Claire Ryann :)  She's such a fun, spunky toddler and insists that Adelina's name be pronounced "Adelina" not "Addy."  She also insists that she belongs to her and keeps calling me by my first name instead of "mom."  We are so blessed to have her.

So sweet!

Our first outpatient Echo

I ignorantly thought nothing would be needed until we got closer to Addy's second surgery.  Imagine my surprise when we were told that early next week we will need to go to for her first heart catheter.  Near her aortic arch, that has been rebuilt, is a portion that is narrowing.  For a single ventricle baby that is bad news, her heart is already working too hard so they can't let it have any resistance.  A catheter will be fed into her heart and a balloon will be inflated to enlarge the opening.  I'm grateful that something can be done about this but sad that we will be back in the hospital after just three weeks.  It's a same day surgery but she will be kept over night in the Cardiac Intensive Care Unit just to be safe.

We also met with speech therapy to assess feeding.  Let's just say the feeding tube is going to be around for awhile, I don't know why I was so surprised.  I know that our little one is critically ill but for a short time I think I had convinced myself otherwise.  No worries, a little sleep and things will be back in perspective.

There were three of us having babies with HLHS at Primary Children's the same week.  Precious Hope returned to heaven on the 31st of October.  Cute little red headed Colten ended up having a different diagnosis but is returning to heaven tonight.  My heart is breaking for these amazing families.

She wore herself out trying to get her arms free.