Yesterday, before surgery

 Playing with Daddy and Mommy

Sleeping in Mommy's arms

A new day

We didn't get much sleep last night but Adelina had a pretty uneventful night.

Three times during the night they tried to let her breathe on her own but she failed all three times.  A few hours ago she passed.  They will do a few more breathing trials and if she passes they will extubate.  We have seen her determination and even her big blue eyes but her pain has been well managed and they have kept her sleeping.  She did need a little pacemaker help last night (she has temporary wires in her heart).  This help has continued today but the need is created by having a swollen heart and they don't anticipate it being long term.

Just met with the cardiologist.  Because she is so young, and sick, and had a rough surgery they are going to keep her intubated until tomorrow.  They know that she has a terrible headache and would like to keep her comfortable without too many drugs, keeping her intubated allows that.

The night marches on

Adelina's oxygen saturations are slowly climbing, we are now sitting around 76%.  For heart healthy kiddos under 90 would buy them a ticket to the nearest E.R. but for us anything above 75% and we rejoice.

The Glenn

We are out of surgery after seven and a half hours.  We were told to expect around five.  The surgeon came out and looked like he'd been through the ringer.  He said it was the hardest Glenn he's ever done and as I've mentioned before he doesn't sugar coat things.  Her pulmonary artery needed to have two superior vena cavas (SVC) attached to it.  The artery was really sick and the middle part was mostly sick scar tissue.  He had to cut most of it away and patch the rest.  Her one SVC is actually attached to a patch and the other is really close to her lungs but was the only place to put it.  The doctor running the heart/lung bypass machine is an older gentleman and he said it was the hardest bypass he has ever done.  Everyone is allergic to the heart/lung bypass machine so being on it much longer has caused her to be very, very swollen.  Her oxygen is sitting in the high 60's to low 70's.  They want it in the high 70's but do to the change in her heart they can't add more pressure because it won't improve anything.  We sincerely appreciate your prayers as our little heart warrior continues her fight.

Tomorrow is the day.

We now know that we are the second case tomorrow for surgery.  We expect to go around noon.  Adelina has had a pretty uneventful few days other than needing increased oxygen.  She is not in pain and really very happy.  She does throw up a lot but always has. We have finally figured out a way to keep her feeding tube in as she continually pulls it out.  She is so sweaty that the tape on her face just comes off.  She loves to sit up and will stop crying when someone sits her up.  Everyday the nurse works to get her out of her crib often either by holding her, putting her in the swing or tumble form, etc.

P.S. who ever named a baby seat a "tumble form?" :)

Uhhh

Our baby is on droplet precautions.  This means that everyone who comes in must put on a gown, gloves and mask (that works here).  I have started asking that this is followed.  This morning the conversation went something like this.  Me,  "Please put on a mask." Nurse, "Oh, I'm not worried about getting sick."  O.K. folks, I'm not worried about you getting sick either.  You have a perfectly functioning heart and your body can handle it.  I am worried about all the kids here with RSV and I don't want my critically ill baby to get it!  Which is what I said, her response, "Oh, I'm not sick."  I want to shout TOO BAD, PUT ON A MASK!  Okay, rant over.

Our little miracle

After a rollercoaster yesterday of trying to wean her down on oxygen the doctors decided that her oxygen needs are heart based, not illness (she is asymptomatic).  Therefore we will NOT be going to "the floor" until after her Glenn procedure.

To give you an idea of how hard our little  heart warrior is working she is sweating through this pillow multiple times a day.

1 in 100 born has a congenital heart defect

Of those, 1 in 4 has a critical congenital heart defect like Adelina's.

Staying put

We tried to break out of the ICU  (just to go to the floor until her Glenn) for a few days but our Addy had other plans so here we stay.

A little grumpy today but kind of loved the swing.

The time has come.

Adelina's case was presented at Wednesday morning's "care conference."  It was decided that she can not wait and needs her next open heart surgery, the Glenn.  We expect this to happen either Monday or Tuesday.  We are glad to have a date but sad that it has to happen so soon.  She is Not stable but should be after the Glenn.  What caused this?  She has a common cold, the corona virus.  Any resistance in her lungs is too much.  We count on passive blood flow in her heart for her to survive.  One of the hard things about this is that she has to have it while she is sick making recovery much more difficult.

I've learned to just pack a bag.

Tuesday I took our Adelina to a routine cardiology appointment one week early.  I didn't feel like she was very stable so requested an earlier appointment.  During our appointment her oxygen needs increased rapidly until she had gone from a 1/2 a liter to 3 liters.  At 3 liters they told me before that they'd take her by ambulance to the hospital.  She went back down to two while I was pumping so they decided to have me take her over.  They thought I was across the street but I was 45 minutes away.  Miracle number one is that her appointment was a week early, number two is that it happened at the office, miracle number three is that 15 minutes after arriving at the ICU she went from 3 liters to 8 on high flow!  It's been quite the ride.

We made a break for it

Everything isn't perfect but we are out of the hospital.  We are still chasing oxygen but on the low side, anywhere from room air to a half a liter.  Adelina really is a dream baby.  Her schedule isn't thrown off from all these crazy days and nights.  She lights up when the nurses walk in the room and they are so sweet with her.  She HATES having her temperature taken and puts up with the blood pressure cuff.  She loves the different mobiles and being able to sit up.  If I could do crunches like she does this extra baby weight would be long gone :)

We are getting back into the swing of things but will see a doctor every week until her surgery, some twice a week.  We have RSV shots, cardiologist appointments, clinic appointments, at least one echo and likely another heart cath.  We expect her next open heart surgery the third or fourth week of February.  I want the best for her but I am NOT ready to send her back in for surgery so we will enjoy the time we have now, we sure love our Addy.

On a side not Adelina had para influenza 2 when she was admitted.  We are so grateful that it has been mild.  She is having a hard time kicking it but it could have been so much worse.

Discharged... almost

Saturday I could hear the doctor and nurse practitioner discussing sending us home.  They both agreed.  We have had high blood pressure and are on three meds to bring it down.  Both agreed that under a 100 was good enough to go home but... she was sitting around 103.  So, I politely disagreed and asked that we not go home until it was managed.  Yesterday it was around the high 80's.  I was happy with that so we packed up, checked out of the Ronald McDonald House and came to get her (Heather and I).  While we were gone she went from 1/12 a liter of oxygen to 2 liters.  We were discharged and admitted without even leaving the room.

I'm sitting here this morning trying to decide if it's okay for us to go home.  They don't know why she needed so much oxygen so they lowered her blood pressure medicine assuming that she is getting too much now.  It takes 24-36 hours for the medicine to kick in but she has only missed one dose at 10 pm last night.  It's only been 12 hours, they also increased the dose of a different drug and this morning she is sitting at 101.  The nurse practitioner came in and said she's leaning towards sending her home today but my gut feeling says it's just too soon.  How I wish that I just knew :)

Clinic visit gone wild

We started our morning bright and early to get to a 9:30 am appointment.  For the last few days I have noticed that Adelina was kind of sweaty/clammy.  Future reference that is a sign of HEART FAILURE.  Wish I would of known that a week ago :)  Our appointment was uneventful other than she would not allow us to get her blood pressure in her arm.  At the last minute the pediatric cardiologist decided to do an echo just for peace of mind.  The echo was not fantastic so a debate ensued onto whether or not to do a sedated echo followed by a cath.  She went from 1/2 liter of oxygen to 3 liters of oxygen. Not Good!  Off she went to the cath lab. Three hours later we got our little sweetheart back with a brand new stent.

The anticipation

We go into the doctor on Thursday.  Adelina is still sick but seems to be doing pretty well considering.  I've been worrying with the mountains of snow and freezing rain that we would have to drive to the hospital and thankfully that has not been the case.  As I'm typing it's raining on top of the mountains of snow.  Adelina is sleeping in her bouncer.  I think she was awake for about one hour yesterday, today she has been much more alert.  On Thursday we expect to find out when her heart cath and sedated echo are.  She needs to be 6 kgs before her next surgery, she is 5.64 kgs this morning.  That is right about 12 lbs 7 ounces.  In about a week she will likely hit that weight goal.  Daddy has to head back to Texas on Sunday but may have to turn right around and come back, hopefully we will know on Thursday.  Last time something was up we went in and were scheduled right away for a heart cath, hoping she's healthy enough to do the same this time.

Illness has struck

I woke up last night to a sick baby.  She has a terrible cough and congestion.  We have been so careful.  For any small baby this would be hard but knowing how hard it is for HLHS kiddos to fight illness, my heart is breaking.  She has been sleeping most of the day, praying that she will get enough rest and be able to kick this without having to go back to the hospital.

Happy Baby!