To go to the floor or not...

Our doctors have gone back and forth ALL day about sending our Addy to the floor, basically a step down from ICU.  Finally, they said they are looking for reasons to keep her here.  First she had a murmur that they were worried about, it turned out that her heart has actually improved function.  Next her NJ tube became an NG tube, it was supposed to be deeper but curled up in her stomach, turns out she's fine having it in her stomach.  Next they are concerned that she hasn't lost enough fluid, then they are worried that she has lost too much so they give some back.  Now her heart rate is a little high and they'd like to monitor it here, just in case.  My open interpretation is that they are all grieving the loss of a precious little one and they are trying to protect her.

HLHS

Another HLHS baby earned her wings today and our hearts are breaking for them.  She was four days older than our Addy and we have been following her progress from the start.  We have had the privilege of getting to know her parents and having their support as our baby has gone through the same things.  Our hearts are heavy for them and the tears keep flowing.

Just want our family together

Last night we started to hit our breaking point.  Four walls were closing in on us.  We went on a much needed date.  It was great to get out of the hospital but we realized we just want to have all our kids together.  Afton, one of our twins has the stomach flu.  It's no fun but it also makes visiting almost impossible.  Our sweet doctor and nurses sent us home today to spend some time with our children.  We were SO careful but can't wait to see them again, I have never felt so torn.

Addy is doing much better and will probably move out of ICU tomorrow.  I'm grateful that I can see the light at the end of the tunnel.  She requires almost no oxygen so I am praying that we can go home without it.  She's sleeping comfortably for the first time in a couple of days and it's a relief to watch her breathing normally.

Echo

Our little Addy is getting an Echo now and her heart looks great.  We are so grateful that her heart is doing well.  She does have a collapsed lung but she doesn't look like she's struggling so they decided that most likely she has acid reflux and is aspirating.  Her tube is being moved back to the NJ but this seems to be the name of the game with kids that have HLHS.  In fact our doctor just told us that we've moved to the next stage, feeding issues.

Apparently she has been doing so well that everyone had assumed she'd go to the floor today so they were discouraged that she'll be here one more day.  Their discouragement didn't pass to us, we are just happy that she is stable and progressing.

Our bright news of the day is that they want us holding her as much as possible and moving her around, this will help her clear our her lungs.  They know that these babies need to be held more so they are really supportive, yay!

Wet lungs

We had a rough night for us but overall not awful.  Addy is not getting enough fluid off so overnight her lungs got wet.  We noticed her breathing last night before leaving for the night but we assumed it was pain, so she was given pain medicine, it turned out she needed a higher dose of diuretics.  We have been holding her today and trying to get her comfortable enough to get some sleep.  Luckily she has slept well.

We missed morning rounds by about five minutes but it didn't matter, all the doctors were upset that her swelling was missed so we have seen a LOT of them this morning.  The surgeon is on call this weekend and has already been by a few times to check on her.  He is frustrated that she will not be able to leave ICU until Monday, he had anticipated tomorrow, either one are a big deal to us.

Daddy Loves

There is nothing like the bond between Daddy and Daughter.  He finally got to hold her after her surgery.

So fantastic!

It took us a little bit to get comfy and we had to fix a few kinks but then I got to hold her for two hours!!

 Sleeping in Mommy's arms.

We are down to steri-strips and say goodbye to the chest tube, it's coming out as I type, yay!

We've been extubated...

and lost another central line.  The central line was in her neck so we're really happy to have it gone.  So she is changing feeding from an NJ to an NG tube, in other words the feeding tube doesn't need to be as far, it only needs to go to her stomach.  She is up to 6cc's of milk an hour which is 60% of the way to where they want her to be.  She still needs some air but not a ton.  Her little voice is hoarse but doesn't sound as bad as I was prepared for.  She still has a central chest tube to lose but the nurse just offered to help us hold her, yay!!!

Many have mentioned how well she has done.  We have been told she is the smoothest Norwood recovery they have ever seen.  I know that this is from all the prayers that have been offered on her behalf, we can feel the peace from those prayers and have been stunned by how well she has done.

She was extubated early this morning, they just decided there was no reason to keep it in.  We showed up and were pleasantly surprised that a large tube was missing.

Also, Brent and I were CPR and Heimlich trained yesterday and sent with a kit to train anyone who is interested.  It's really cool as it comes with a baby that is easy to learn with.

*We just heard Addy coo.  So cute!  I can't wait to cuddle this sweet baby of mine.

Tubes out

 We lost a bunch of tubes today and... we get a blanket back.  Her feet are a little cold but they still have IVs so she isn't ready for socks.  She was trying to play with her ventilator tube so a sock on her hand was in order.  She has been so much more content with her hands by her face.  We were never able to get a profile ultrasound picture because she likes her hands over her face, it looks like she feels the same now.

Morning Rounds 10/27

So many changes this morning I can barely keep track.  First they are taking out her "pigtails" or the two chest tubes on her sides, she will still have one in the middle.  She no longer needs the four electrical leads in her heart so those are coming out too.  The port in her belly button is coming out slowly for the next hour, it's in a main artery so slow is better.  She has a few lines that nothing is going into so I doubt they'll be around long, yay!  She is still on Epinephrine for her blood pressure because she's on Lasik and it drops blood pressure so once one goes down the other will too.  They will do some tests tonight to see if she can breathe on her own, which they know she is doing now.  Tomorrow if everything goes well tonight, she will be extubated, in other words she will be breathing on her own.  We may get to hold her in the next couple of days :)  Her feeds are now going up every six hours by 1 cc which still really means she is getting almost nothing but is one more step towards real feedings.

A great night

Every time we leave our sweet Addy it's painful.  Last night was no different but once again she sailed right through.  She didn't need any additional pain medicine and was stable all night.  They started her ventilator at 34 breaths per minute right after the Norwood.  Last night she went down to 20.  That means that the machine pushes her to breathe in and out but many of them are her own.  They are still keeping her pretty sedated but that's to be expected.  Her feedings are going up every eight hours but she's only getting 2 cc's an hour so it's considered trophic(sp?) feeds, in other words they aren't for nutrition as much as for working her digestive system.

She's out of surgery

We thought she'd have surgery between two and three, it turned out to be just before five.  Waiting is torture(waiting for the surgery and the waiting for them to be done), I think we must be functioning on adrenaline because we are both crashing and it's only eight.  She was a champ and everything went well.  They have a couple of minor concerns so they are checking her with an EKG.  The heart gets used to more room so when they close their chest they struggle a little with pressures and they need to make sure that they are still getting good blood flow.  She is nice and pink and has lost most of her swelling.

Morning rounds

I love how they do rounds here.  The whole team comes in every morning and gives their report.  I understand a little of it but usually have to ask questions either while they are here or of the nurse when they leave.  So we know for sure she'll have her chest closed today between two and three.  I also love that when we meet doctors in the hall they give us updates.  We met the ICU doctor late last night and then this morning we ran into the surgeon in the hall and he not only knew her numbers but his schedule.  I was surprised and grateful that he stopped to give us the updates.

No news is good news

We were able to get some much needed sleep as our Addy girl had an uneventful night.  We just keep repeating "no news is good news."  It doesn't take the concern away but it does help us keep things in perspective.

She seems to enjoy having us talk to her, she tracks daddy so when her eyes are open he sticks around.  She's not usually awake for very long so we cherish the times that she is.

Looks like we're closing

The surgeon came by and said it looks like he'll close tomorrow afternoon as long as she's lost some fluid first.  She's losing fluid!  Her little sausage feet and hands have gone way down, they were shiny and so puffy.  They never had to give her fluids so the nurses were telling us that her swelling was not as bad as expected.  It's always nice to hear good news.

1 week old

I can't believe she's only 1 week old. Her nurses are doing a great job of keeping her happy and clean, after the EEG and ultrasound her hair was a sticky mess so she got a little head massage.  She loved having her hair washed and a little bow was added for good measure.

More good news

While I'm on the subject of good news, our social worker did all the leg work with our insurance and a hospital grade pump is being delivered to our room in Cardiac Intensive Care.  I'm impressed!

Our child life specialist is sending home gifts for our children.  The first gift was blankets for each of them, I love that they are being included even though they are sick and we can't get away to be with them.  Grant said his reminded him of Harry Potter's invisibility cloak.

Results are back

The ultrasound is CLEAR!!! So this means no brain bleed.  We still have no idea why she's doing this rhythmic blinking but we decided that we will stay with the positive unless proven otherwise.

Dressing change

Addy has a wet/dry dressing covering her open chest so they changed it and said it looks like she may be ready to be closed, yay!!!  The surgeon will come by later and make a decision but it's great that the swelling is down.

On to the ultrasound

So the neurologist looked at her EEG and said she is NOT having seizures.  The next step is to check on the ultrasound for a possible brain bleed.  She is now resting comfortably but had me in tears as she tried to wake up and was in pain.  They have her more sedated and will be taking two vents out of her chest shortly.

The dressing on her head just holds the EEG wires on, it looks much worse than it is.  They joke that they've taken some of her "real estate" so now we can only really touch her legs and feet.  As I'm writing this they've actually taken the head covering off :)

So many seizures

As I mentioned she did some rhythmic blinking this morning.  They placed her feeding tube and woke her up, she has had one seizure after the other.  I need a good cry.  She was crying(you can't hear her because she's on the ventilator), tears flowing down her cheeks and writhing all over.  They gave her more sedation but every time we comfort her she has another seizure.

They use a chest x-ray to make sure the feeding tube is in the right place, she now gets 1 cc of milk an hour.

Looking back, our little family met Addy when she was a day old.

This was the best one I saw, the kids wouldn't stop rubbing their hands together after using the hand sanitizer, lol.

A smooth night

Brent and I spent the night at the hospital in the Ronald McDonald Family room.  I came down and checked on her through the night and every time she was stable and sleeping.  We have a few goals today.  You can see in the pictures that she is really swollen, it is worse this morning but hard to tell and yes I have more pictures :)  They are giving her Lasik(sp?) to get rid of the fluid because that same swelling is inside her body too.  She gets to start mommy's milk today which is really a surprise to me but they said they've learned that if they don't feed them their gut starts to die because their body sends the blood elsewhere.  She was given 34 breaths a minute and is now down to 25 on her ventilator.  She really is too drugged to breathe on her own just yet.  I came in this morning at 7:30 and when I started talking she opened her eyes, she just figured out eye contact yesterday before her surgery.  So she starts blinking and then it seemed odd, not like the sleepy it's too bright eye opening but a rhythmic blinking.  I was a little distraught so I put my hand on her head and she stopped.  They are doing an ultrasound and EEG this morning to rule out brain bleeds or seizures.  When the nurse came in she said the same thing had happened to her earlier.  Hoping it's nothing.

Recovering...

The Doctor came back and talked to us then about an hour later we followed her to the CICU.  She is so swollen and they expect it get worse.  You can see that her little legs are shiny from so much fluid.  Addy seems comfortable and is heavily sedated, she's in great hands but it is so hard to leave her.  The nurses are wonderful, the surgeon has checked on her twice since 2 p.m. and the intensive care cardiac pediatrician has been back multiple times.  I really just want a video monitor or instant transport, the Ronald McDonald Room is the next best thing so that's where we'll spend the night.



I just had something kind of funny happen.  I went to a pump room multiple times and it was occupied so I asked at the desk where else I could go.  They directed me to a set of elevators and just told me to get off on the 4th floor and go around the corner.  I hop on the elevators and... I'm stuck, it requires an employee badge to operate it.  I can't open the doors, I can't go up, and I can't get off!  After pushing all the buttons I was finally able to go down and floor and get off.  Now I know better than to ask at that desk for directions, lol.

She's headed to the Cardiac Intensive Care Unit

We met with the doctor again and other than a LOT of bleeding and having a sick Patent Ductus Arteriosis (sp?) nothing was out of the ordinary, he had to discard the sick part and couldn't get all of it but didn't anticipate that it will be a big issue.  A shunt that they put in is made of gortex so any pin holes in it are tricky for her blood to clot up after being on such a high amount of blood thinner.  Her heart was swollen at the beginning of surgery so they anticipate that she will need a few days of having her chest open.  This is not unexpected but sad either way.

Surgery

We have had a couple more updates, first that they had started, then that they were finishing up and now that she is finished and the doctor is just working on a little bleeding but will be out in forty-five minutes to an hour to talk to us.  Her surgery has gone a little more quickly than we anticipated, we expected to have her out around three and it looks like it will be closer to two.  Can't wait to see our baby even though we've been told to expect her to look horrible.   She has several more lines, be intubated, tubes coming out of her chest, an open chest and severe swelling... at least these are the things we are prepared for.

The pumping dilemna

So as a mommy I am very tired, I pump every two hours so that Addy can have breastmilk.  What you don't realize is that every time I go to pump I have to be away from my baby.  I can't hold her and pump and often have to go to another room to pump.  What I have guilt over is that if anything happens I spent my time with a pump instead of my little princess.  I have cried many tears over this but am hopeful that she will be the little miracle getting all this milk, which she LOVES.

The morning of...

We were able to hold Addy and comfort her before surgery.  She LOVES her milk and was not happy about being denied food.  They resorted to giving her "sweeties" or sugar water on her pacifier but after awhile even that ticked her off.  She fell asleep over mommy's shoulder and was content until transfer.

We met with Dr. Eckhauser

Meeting with the surgeon left me almost hopeless.  No advances have been made in 15 years and he estimates the success to be closer to 75%.  We are in better spirits this morning but are under no false assumptions that this will be a smooth ride.

Dr Eckhauser has four MAJOR things to do to her heart just to keep her alive.  Her aorta is tiny so he's sewing that and her pulmonary valve together, they must be exactly the same height.  He is cutting a large hole between the upper two chambers(creating a permanent hole between atria), if he cuts too large her electrical impulses will no longer work and she will need a pacemaker.  He also needs to disconnect and change pulmonary artery and create a shunt going from the right side of her heart to the new piece he's created that will feed oxygenated blood to the rest of her body.

She has been back for almost two hours but surgery still hasn't started.  They need to place four IVs and another arterial line before they can start the heart/lung bypass machine(which is sewn to her).  Her blood has to be thinned down to water or when it hits the plastic of the machine it will clot.  Then they have to cool her body to around 72 degrees to prevent damage to her body.  For five minutes they stop her heart so that he can see what he's doing.  When they are done with all the changes and have warmed her back up she will have a severe allergic reaction to having her blood pass through plastic.  It will take several days for her to lose the added water that this brings.  He said tiny pin holes will take them some time to get the bleeding to stop since they gave so many blood thinners.

We hope to have her back mid afternoon and that complications are few.  We know she's a fighter and fervently pray for the surgeon and anesthesiologist.

4 days old

Adelina is four days old.  She loves to be warm, is a champ at draining her milk and is really a great sport considering that they are not allowing her to drink her fill. She is still stable so it looks like surgery will continue for Monday morning.  She looks so healthy other than working a little hard breathing so it's hard for me to come to terms with just how sick she is.  We couldn't love her more!  Addy loves the sound of her Daddy's voice and his warmth and goes right to sleep when Mommy holds her, we hope for many more snuggles to come.

Hypoplastic Left Heart Syndrome(HLHS) - what Addy's heart looks like

This is essentially what Addy's heart looks like with a few different details.  Her mitral valve is open a little bit and her Aorta (the arch at the top), is a little bit bigger.  Most HLHS classic cases have such a small aorta that no blood passes, she can pass a little blood but it's going the wrong way.

Going in for a PICC line

I always mistakenly thought that a PICC line was just like any other IV.  Now I know it goes almost all the way to our little one's heart.  She needs to be fed but her oxygenated blood is going mostly to her lungs and very little to her gut so she can't handle enough food.  They give lipids or fats and TPN (total nutrition) in her PICC line..  Hers can't be placed where they normally go which I believe is in her arm so they are put it in her leg.  Normally they sedate babies since they won't hold still but our Addy is a sugar lover so the "sweeties" was all she needed, yay!  Definately a Hedquist daughter, lol.

She's on a little heated air mattress and she LOVES being warm so is very content.

Echocardiogram

We went to quickly visit our new baby and found her getting her first echo, we stayed until past midnight.

Our Heart Warrior is Here

Adelina Faith Hedquist joined our family today at 6:37 p.m.  She weighs 7 lbs 2 ounces and is 19 and 3/4 inches long.  She came out using her lungs well so mommy was allowed to hold her, yay!  We couldn't love our precious girl more and are so excited to have her.