Look who turned 1

Adelina
Stands solo
Takes a couple of steps
Climbs everything
Jabbers
Eats!!!
wears 12-18 month clothes
Loves being outside (doesn't trust the grass)
a Pacifier baby through and through (she often carries a spare, just in case)

It's been 1 whole week

It's been 1 weeks since we took out Adelina's feeding tube (she sneezed and it came out, so we got rid of it).  We have been weaning with a program this time (growing independent eaters, we love them).   We cut all her night feeds and then decreased all of her daytime feeds.  We had a couple of cranky days and around day 8 she started to take more than a half an ounce, after she ate we'd give her what she hadn't taken through her tube.  She plateaued at an ounce and a half so we decreased her daytime tube feeds again.  She quickly picked up from here and we skipped the last step.  We had some cranky nights where we knew she was hungry but she would not take a bottle.  Now we are reteaching ourselves how to feed a baby instead of how to feed a pump.  The pump is on a regimented schedule.  Turns out our baby does not want to be fed by the clock or while sleeping (although I do dream feed her last med of the day).

Things I LOVE about being tube free! 

Baths are a snap. 
   All we have to do is undress her and plop her in the tub, she loves baths and we don't constantly lose the tube after them. 

Any outfit is fairly easy to get on and off.
   It's like a whole new wardrobe has become available, shopping anyone? 

We are mobile.
   Our mobile baby is so much more mobile and never has her tape ripped off her face.  We are walking along furniture now and standing solo (a few times so far).

We babble.
   We are babbling so much that we no longer need speech therapy.  We want three words by the age of one and she already has them, dada, mama, baba, and weeee (lol).  She also has words for her siblings.

We can leave the house.
    Leaving the house is not an hour long process and I don't have to run back and get whatever we left (in all fairness I rarely left unprepared). 

Food glorious food
    Adelina can eat at the table with us (she used to play on the floor while we ate or be in bed).  She can tell us when she's hungry, what she likes or dislikes. 

No more throw up
   We haven't lost all contents of our stomach since we started weaning.  We no longer force feed when she's not feeling well and we no longer overfeed.  She was getting 31 ounces of milk a day, she is nowhere near that amount, she prefers solids and liquids combined.

Up, up and away

For us, this is normal.  I did not call my husband to come home from his business trip.  I sorely missed being close to family but greatly appreciated friends who stepped in to help.   I did not feel like this was critical but since I determined long ago to enjoy every day I'm sure it seemed odd that I was taking pictures and laughing with my baby as the day progressed.

Three weeks in a row at Texas Children's Hospital

I'll start with our most recent and work back.  This week she was looking  little dusky and throwing up (not all too uncommon for us).  Doctors decided to life flight her to TCH just in case her stent in her heart was failing.  It turned out she was anemic and was given a blood transfusion.  It feels like we gave her a boost of energy, we can barely keep up.

On the 11th we went in for a heart cath.  It was determined that her stent was full of scar tissue (I have a similar issue and unfortunately passed it on).  So, instead of replacing it in a couple of years, it lasted 6 months.

The 3rd we went for feeding and learned that we are NOT ok with this method.  The therapist wanted to create aversion and then "work through it."  We aren't going back but have once again started a wean through "growing independent eaters."  We are on day 3 and she has greatly picked up her solid feeds but hasn't changed much on liquids.

10 months old!!!

Adelina Ballerina

Loves to be held

Jumps up and down in her crib

Says, "Hi, Dad" and motions with her hands

Says, "RANT!!!" For brother Grant (loves her sisters!)

LOVES pretzels

Has been known to point where she wants to go

Thinks windows are the best!

Just started walking along furniture although rarely pulls herself to standing

Still a fantastic sleeper

Bum scooter extraordinaire 

Top two teeth are coming in

Day 6 of tube weaning

I'm writing this at 9:30 in the morning and baby girl is happily playing instead of sleeping.  We started a hunger led tube wean and initially cut feeds by 30% and honestly she just acted more comfortable.  I would feed at noon and just before she would get hungry and take an ounce or two.  The most she has taken is just under 3 ounces.  We cut her night feed from 10 hours to 7 and skip her 9 am bolus.  She gets four bolus feeds during the day and then continuous at night.  She's not even grumpy.  Last night she pulled her tube and I heard her tummy growl at 8 pm for the first time, I tried a bottle but she was too tired to be interested (within minutes her feeding tube was in and she was being fed).

We were adding a thickener to her milk (thick foods are easier to swallow).  It was a gel and I have some serious concerns about it's safety.  We are now using rice cereal and she seems pretty happy with it.  When she wants it she can down an ounce in about 2 minutes without any signs of aspiration.

Today starts a cut of 50%.  We tried offering food this morning and she took a few cc's but nothing substantial.  We are still recovering from a poor speech therapy session.  For parent's of tube fed babies DO NOT EVER let a speech therapist touch you babies mouth until they have explained what they are doing and you have set parameters (no experience with heart kids).  10 minutes was all it took and Adelina will not let us put food in her mouth or near her mouth, luckily she will put it there herself.  Adelina LOVES pretzels in any form and pears seem to be a hit or miss favorite. 

Update:  Adelina did not pick up eating so we stopped and went back to regular feeds.

Texas Children's Hospital

We went up to meet our cardiologist on Wednesday, as of Monday we are at the top ranked hospital and met with the doctor who is the head of the single ventricle program.  We really liked her and heard what we expected.  We will go back shortly for another intervention.  Her aorta is narrowing and this needs to be addressed.  We are in a time crunch as the fall is nearing and if we do not wean her from the Ng then she needs a G tube surgery a couple weeks after but prior to September first. We meet with a GI doctor at the end of the month.  Praying that we can get her eating on her own by the end of the month.

We've returned home

What an adventure our lives have turned into.  We boarded an airplane with four kids under the age of 6 and they were so good.  Our two year old had her moments but overall we were really happy with how they did. 

Traveling with oxygen is quite a bit of work but Adelina did well.  We arrived home on Wednesday (our AC went out on the way home :( ) and by Thursday morning Addy's sats were 69.  I put her on oxygen and should have taken her to the ER but assumed it was normal for heart babies with a cold.  Fast forward to 3 a.m. and she's running a fever.  I called her pediatrician and he sent us to the ER.  I went to the local ER and was promptly told that they couldn't really help her (good to know).  I then went to the children's hospital where they did blood work, poked and prodded, started an IV which promptly failed, etc.  We were sent home the next morning with, "she has the enterovirus."  So, she has a cold, we've been here before so I though o.k. we can handle this.  I should note I had had no sleep that night so hind sight is 20/20 but sleep deprivation is a bear. 

Sunday morning our baby girl threw up her meds but it was about 30 minutes after giving them, if it's within 5 you can re-dose but I wasn't sure about 30 so I called the on-call cardiologist.  He was wonderful but VERY concerned that no echo had been done in the ER.  Now that I think back I knew better.  He kindly insisted that we take her to Texas Children's in Houston.

This is a whole new ball game for us.  Our wonderful friends came and traded vans with us and took our other three kids.  We packed way too slowly but eventually made it out the door.  From now on we have a "to-go" bag so we can pack off a list and have back ups in a bag just in case.  Thankfully it was Sunday so traffic was light.  Heart kids get an "Ace of Hearts" card that pushes them to the front of the line in the ER, we didn't have one but everyone knew exactly what to do, it was so nice. 

It was a long night but within a short time we knew that her heart was not doing ok.  The first thing they did was an echo and blood pressure in all four limbs.  I'm still kicking myself that I missed that they didn't do these things in our first ER visit.  Her blood pressure in her right arm is really high, this means that a part of her heart is narrowing and needs intervention.  We stayed until Thursday morning while they weaned her off oxygen and got her back to full feeds (I had been continuously feeding her to compensate for constantly throwing up).  My sweet husband went back and then returned to Houston to pick us up.  We go back at the end of the month to meet her knew cardiologist and schedule her heart cath.  It has also been determined that she can't wait for a G-tube but she has to wait until she hasn't been sick for six weeks to have the heart cath and then a couple weeks later she can get the G-tube.

Aside from the craziness of returning home we have LOVED seeing all our friends and we are adjusting to doing things on our own.  I keep saying it's like we moved in without moving out.  A year is a long time for a child.  They have rediscovered their toys, keep trying to get old clothes to fit, loved playing in the water in the morning and evening.  Dad and Mom have loved having them in their own rooms.  We found a scorpion this morning and later I went into one of the kids rooms to find it had been hastily picked up, lol.  Motivation to keep clean?  I think so, lol!

7 months old!

Our precious baby is 7 MONTHS old.  She makes our whole world better.  We spent the day at primaries where we ran into some of our heart friends.  Stephanie is one amazing mom, you would never know that this is her first!  We had an x-ray and it looked great, yay!  Feeding clinic was pretty upset with us and is pushing for a G-tube.  Our sweet girl has been throwing up A LOT and feeding the bed more often.  Remember how she has advanced fine motor skills?  Well, she thinks opening the feeding tube is all kinds of fun and does it on a regular basis.  Feeding the bed happens too often.  We lost a half a pound in two weeks :( 

On the bright side we have learned to beckon/wave, the kids keep telling people that she's "fanning herself."  She still sleeps through the night, yay!  We had to move her mattress down since she has such super abs that she can almost sit straight up from laying without using her hands, lol.  She rolls from her back to her tummy often now and has two pearly whites.  She now gives open mouthed "kisses."  Our Adelina LOVES daddy and has separation anxiety if either one of us leaves the room.  I think she may have seen "Moana" one too many times as she likes to rest forehead to forehead with those she loves.

Miracle moments

Our baby girl pulled her feeding tube this morning so we gave bottle feeding a go all day.  The feeding clinic asked us to go three days where we let her be hungry during the day and feed her through the night through the tube.  First hurdle was cake, she didn't have a problem taking her meds by mouth.  Then came the milk, the first bottle didn't go so hot, the second she took more, by the third she was breaking previous records and just before bed she sucked down almost an ounce in 3-4 minutes.  Total we did 80 ml and need to get to 420 ml.  We have two more days and are so hopeful that she can take in all by mouth.

***update: Day two she took an ounce in 3-4 minutes and then decided not to eat the rest of the day so we went back to full feeds in the tube and will try again another time.

Oxygen woes

I have spent HOURS upon HOURS on the phone trying to get us a pediatric oxygen concentrator that runs continuously at 1/2 a liter with an extra battery pack.  Yes, it's a mouthful but it should NOT be this impossible.  We have not been able to come to a solution.  The only option that we have been given is renting one for around $400, this is problematic since we will need it over and over again.  The other option is buying...

MIlestones

Our first tooth broke through on Wednesday and yesterday Adelina decided to roll over all on her own from back to front.  She has been able to roll over before but would only do it when pushed.  She went through all the effort to get a pez dispenser :)

Prancing along

A cold swept through our family a couple of weeks ago but our poor Adelina is having the roughest time with it.  We have been warned what a big deal it is for our little fighter to get sick and they are right.  I took her in to Primaries for an appointment a couple of days ago and luckily this cold is all in her head so her oxygen levels are holding steady.

We had more good news while there.  Adelina (once she is over her cold) no longer needs oxygen at night unless she is sick.  It's a good thing too since she's been getting tangled up in it.  Right now we are on four meds multiple times a day.  Next week we get to stop one of the them and we are going to outgrow the dose of the other two and then stop them at our next appointment.  That will leave us on just half a tablet of Aspirin every day (she will always be on Aspirin).

Speech therapy has been given the go ahead to be a little more aggressive in teaching our baby girl to eat.  We are working to get her stomach to expand so that she can take a full feed in 30 minutes.  We have a long way to go but a solid plan.  We will try this method for 2-3 months.  If it does not work we will get a G-tube but we hope she will be able to take everything by mouth and not need the G-tube.

Great News

We are cleared to travel home!  We just have to go to one more visit in May to be sure but we are okay to travel home after almost a year.  Brent will fly out in May and we will fly back with him when the kids are out of school.  We are so excited!

Adelina had an appointment with speech and nutrition on Thursday and after that we saw her cardiologist.  Speech is on board with teaching her hunger before we go straight to the Gtube and has started us on the road to bolus feeds.  In other words we are slowly increasing how much she gets in three hour blocks until she is being fed for one hour, off for two, on for one, etc.  During the night she will still be continuously fed.  So far we have given her bananas, applesauce, a smoothie (which she liked).  She likes to suck on apples.

Dr. Pinto came in and turned off her oxygen!!!  She did just fine and now I have the song from Pinocchio stuck in my head, "I've got no strings to hold me down..."  We can go outside without several minutes of planning.   I can follow the kids out to the garage.  We are no longer a tripping hazard.  So many wonderful freedoms.  We are still on at night but have really enjoyed the freedom of our last couple of days.  

Tough choices

Huge improvement today and another testament to the power of prayer.  Adelina took, from a bottle, 10 cc's of milk.  That is about 2 teaspoons.  Prior to this amazingness we have only managed 2 cc's.  We need to decide if we can get her off the tube quickly or if it would be in her best interest to get a G-tube which is placed directly into her stomach with a "button" above her belly button for feeds.  She has three speech therapists that work on feeds and they are all very different.  One thinks that she will learn to eat around age 4-5, she is in no hurry to get her eating by mouth, pretty discouraging.  One feels that we need to get her hungry and she'll eat (this is what happened today).  The third had a tube fed child until the age of eight and recommends not waiting for a G-tube.

Therapy

Our speech therapist, one of three, came by today.  We discussed just going straight to solids.  For Adelina they are easier to eat and she wants to try what we are having.  She tasted yogurt and a smoothie today, if I'd had ten seconds I would have given her more smoothie, she LOVED it!  Unless she is formula fed we were told that most babies don't care for baby food and just to start with the things we eat and puree them.  So, welcome to the table little princess :)

Physical therapy came by yesterday and once again this little gal was ready.  She is able to sit for about 30 seconds, more if she is interested in what is in front of her.  She likes to jump up and down and is getting pretty skilled at push ups.  Her PT had her kneel up to a board but she didn't want to kneel, she decided to crawl over the board.  It was a little rocky on the other side since she didn't use her hands but just her legs.  We are now working on crawling.  It takes two people to more her arms and legs but considering that she has only been allowed to use her arm and chest muscles for a couple of weeks this is huge progress.  I thought for sure she would sleep the rest of the day, instead she threw up and took a cat nap.

We finally bit the bullet and

got daddy a smart phone.  He has patiently waited FOREVER but until now we just couldn't justify it.  The kids have been excited all day that we can finally send him pictures.  Luckily, my phone shares to his ipad so he sees pictures and videos that we have taken throughout the day.  Adelina still doesn't love facetime but we make sure that she sees daddy often.

Just enjoying the journey

We have been enjoying spending time in the sunshine and have had very little time inside.  Adelina is now our fourth to take up jogging with mommy.  Luckily I am so slow that grandma can walk along side.  She enjoys playing on the floor, watching from the highchair, jumping in her jumper but most often just being held.  We take turns trying to get our Addy to laugh, so much joy in such a little body.

bananas

We have been trying to get Adelina to take food by mouth.  She thinks we are playing a game.  She takes milk from a bottle like a rabbit and until yesterday would just taste bananas.  Thanks to her aunt Heather she took about a tablespoon of bananas last night and was happy the whole time.

5 months old!

Our precious 5 month old is now 15 lbs 10 ounces.  She loves to laugh and babble.  She rolls from front to back, sits with minimal support, passes her pacifier from hand to hand and puts it in her mouth and is a wonderful sleeper.  She likes drops of milk and tastes of bananas.  We are blessed to have her in our family.

Laughter

Two days ago I heard the sweetest sound and looked over to see my little man putting on a show to get Adelina to laugh.  She laughed once and then laughed over and over again, a full on belly laugh.  We were laughing just as hard as she was.  All the kids then started to chase their tails to get the same response.  We are so grateful to have this little one in our home.

Doing great

We are doing great and just enjoying loving up our Adelina.  She has just started to take a few drops of milk and a tiny bit of bananas on a spoon.  The first time she tried milk the speech therapist and I had woken her up so she was pretty unhappy, she tasted the milk and was all smiles.  I can not express how much joy it gave us to have her take the smallest amount of food by mouth.  One drop at a time we will figure this out :)

So Blessed!

We have had an uneventful month.  No quick trips to Primary Children's.  Adelina is so happy 99% of the time.  Her big brother and sisters adore her and can often be found hugging, singing, telling stories, and laughing with her.

We haven't been able to really bathe her due to her sternal precautions.  I've just used a sink before but it's too tricky to hold her up without hurting her.  Yesterday after her four month immunizations we ran to walmart and I finally got a baby bathtub.  We bathed her this morning and she HATED it.  Poor sweet girl.  She has been asleep ever since, I guess all that upset was too much.

She weighs 15 lbs, and is 24 inches long.  She has outgrown most of her 6 month clothes but the 9 month are a little long on her.  Bows leave bruises on her head but we are taking advantage of her silky hair to spike it up a little.

Looking good

Our appointment was full of good news!  Adelina's heart is doing as well as they wanted.  Her oxygen saturations are in the high 80's, which is amazing :)  Her EKG looked good and she no longer has wet lungs.  She is also not aspirating liquids into her lungs.

None of her meds have changed and she will remain on oxygen for some time which kind of surprised me but her cardiologist explained that the main concern after this surgery is fluid build up in and around the lungs, so the oxygen is more like a medicine than a life line.

We saw the feeding clinic and were cleared to give her bottles once a day and turn off her feeds for two hours a day.  We tried the bottle the first day and she took nothing :(   I was a little disappointed but hey, we have her and I can live with a tube.

I asked about going back to Texas and was told that we can talk about it in May.  It wasn't a no so I'm hopeful :)

Next appointment coming up

We are meeting with our cardiologist in the morning.  It's been nice to have a little break from the hospital :)

Cuddle time

I just can't get enough of this little one.  If I could hold her all day every day, I would!

We believe in sleep

We were awake for one hour before we decided a nap was in order.  I walked away for just a minute and came back to this peaceful little one.

4 months old

We are so excited for Adelina to hit four months old!  She is such a light to our lives with such a ready smile.  She is determined to roll over even though she is not allowed to just yet :)  She has found her voice and it's so sweet.  She loves to sit up and see the world.

No news is good news, right?

I feel terrible that I have not posted since the 5th.

First, Brent picked up the stomach flu on the 6th so I ran him to my parent's home... with the computer.  Yes, that does explain a lot :)

Adelina had some issues with her incision needing to drain so she needed a little more help with pain.  I would call in the morning to see how her night was and they would reply that it was "rough."  Eventually we decided that we were not on top of her pain so they added morphine and were able to get her back on track with just one dose.  Good thing too because her IV failed shortly thereafter.

We then kept her on round the clock doses of Tylenol and Oxycodone.  The combination worked but if they waited even 15 minutes to give her the oxy she would struggle for a couple of hours.  They kept her on both and we were discharged on Thursday the 9th.  We were sent home with instructions to wean her off the oxy in the next couple of days.  Now that I've had this experience I wish they would have done that at the hospital.  We have now had four nights of very little sleep.  The first night I had meds to give her every hour- two hours and she was upset in between, the second night was the same.  I did not wean her completely until last night and even then we had a rough night.

Luckily, she seems like her happy self again this morning.  I'm hoping she will take a great nap this afternoon so I can join her :)

I keep hearing comments about why I can't take care of other things.  We still have babysitters come in the morning when Brent is not here and my mother takes care of the kids in the afternoon.  It is all I can manage to pump (at 8, 11, 2, 5, 8 and before bed), keep up on meds (at 8, 2 and 8 not including pain meds), mix bottles (usually around 4), change out feeds (8, 12, 4, 8, and before bed), clean up throw up (we went through 8 outfits and blankets on Friday), change clothes, change diapers etc.  This part I have down pretty well the real trick is basics like making and eating food? Showering? Laundry? Washing bottles and pump parts? etc.  I am sure we will get there but right now it's taking a community to function and I am so grateful for that community :)

Daddy love

Brent guarded Adelina all day so that her pain was well managed and she was allowed to sleep for six hours straight.  Thank goodness for her Daddy!

Tomorrow will be a better day

The day has continued much as it started or maybe it's the migraine I finally kicked at 5 am... that's working it's way back.

We went to have her NJ tube placed under x-ray and they wanted to tie it in through one nostril and out the other so she will associate tugging on it with pain.  No Thank You.  I think we have enough pain in our little lives.

We tossed 24 hours worth of milk because she can't tolerate the formula they mixed it with and now she's not tolerating the other option well.  We only have two options.

We do not have our pain well managed today and Mommy is NOT okay with it.  We just got an order to add Morphine to the mix.  I'm hopeful that she will finally get a real stretch of sleep.

I finally held her but it caused her discomfort so I think we will wait a couple more days.  As much as I want to hold her I want it to be in her best interest, not

mine.

She should be sound asleep after getting some oxy an hour ago but instead she's checking out her swing.  The child life specialists here are amazing, Jen is our favorite and keeps us well supplied with swings, bouncers, mobiles etc.  She has started to enjoy board books, I love being able to distract her for a little while.

Two IVs have blown today.  Her foot is huge.  So grateful her nurse caught it when she did.

The IV team is on their way... enough said :(

Rough night

We called our nurse this morning to see how Adelina was doing and learned she'd had a rough night.  The top of her wound is not healing like it should (it's seeping) and she just looked and acted miserable.  Her labs looked good and her oxygen saturation's look great, she's only on a 1/2 a liter of low flow and can cry without dropping into the 50's.

Dr Griffiths came in and poked around her wound and decided if it doesn't look better tomorrow they'll intervene a little more.  She is back on antibiotics, just in case.  Our little advanced three month old pulled her NJ feeding tube during the night.  Food has not agreed with her since they took her off fat so I can't say that I blame her.  The plan is to put back the NJ and start feeding her again but they only have two fat free formula options and she isn't tolerating either one.  She has severe reflux and arches her back over and over again.  They spin down her milk to cut out the fat but then a full feed is only 10 calories instead of 20 which is just not enough.  She is our second baby that can not tolerate formula.

Look how far we've come!

The tower behind Daddy has no medicine flowing from it!  We are down to just her feeding pump.  She in on 1 liter of oxygen, down from 12 liters of high flow on Monday.  She no longer needs nitric oxide and although she is getting medicines in her feeding tube she is no longer on anything continuously.  We are waiting to see if she keeps her chest tubes today...  We hope to hold her soon and the chest tubes make that tricky.

Busy day

We have had a pretty busy day.  Addy no longer has one chest tube, an IJ line in her neck, anarterial line in her wrist.  We did gain to regular IV's but they were able to get both in on the first try.  She is no longer on presidex (sp?) or phentanol (sp?) and is weaning off melrenone (sp?).  I know these don't mean too much to you so I'll explain that the first two are sedation drugs and the last is a heart function drug.  She is no longer on nitric oxide and is down to four liters of high flow oxygen.

Unfortunately she has Chylothorax :(  This means that her lymph nodes are over drawn and leaking fat into her chest cavity.  She is now getting fatless feeds.  They spin down her milk and add calories without adding fat, we expect this to continue for the next four to six weeks.  We are still hoping a little that she'll prove us wrong but she's in charge.  Her last two chest tubes usually come out first but due to the Chylothorax they will need to stay in until this excess stuff is drained.

She is still on oxycodone for the crazy headache that they know she has but she is doing so well considering the battle she is fighting.

Hope

Our heart friend Melissa came today, we loved seeing her and will always love and miss her sweet Hope.

Progress

We are hoping today that Adelina will be able to lose her chest tubes and pacing wires.  The anesthesiologist came by and told us that they COULD NOT place an IV even when she was sedated.  That is now the third doctor to tell us how hard the Glenn was for them.  She has little bruises all over from trying.  They left in the one that was placed a week ago Tuesday but, yesterday, it fell out (it's miraculous that it lasted as long as it did), we lifted her foot and found we were successfully taking care of her bedding,  They want to take out the arterial line in her neck but need to place an IV before that is an option.  The anesthesiologist couldn't place an IV so I'm sure the IV team will struggle.  IV placement is the hardest thing for me when we are admitted, I dread it (even going in for surgery at least I knew she would be sedated before they would try).  The silver lining is that we will likely get to hold her today :)

Baby steps in the right direction

Adelina was extubated this morning!!!  Brent and I were finally able to be useful.  She wasn't too upset but clearly still drugged.  They gave her a little tylenol and with some parental comfort she is now sleeping peacefully and enjoying her high flow nasal canula at 12 liters of oxygen with nitric oxyide.  Her swelling has gone down considerably although she still has a ways to go.
 
Adelina opened her eyes and focused on Brent, she sure loves her daddy.  She is still getting sporadic help from her temporary pacemaker wires but we are expecting that she will start losing extra tubes today.  She's down to six meds but three are sedation, one is antibiotics and one they will wean off.  She had poor heart function after surgery so they gave her melrenone (sp?) which they expect to wean off after another heart echo is done.  She has not needed any blood pressure medicine but was on three before surgery, yay!

We are really looking forward to being able to hold her.  Maybe tomorrow :)

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!