3 months old

Addy is now three months old. I can't believe it. The last three months have flown by in the blink of an eye. I'll be going back to work in a few weeks and I hate it because I don't want to miss a minute of these precious moments while she is an infant. Everyday we live with the worry that things are going to fall apart with her. Every sniffle, poop, and spit up is analyzed for signs that something is possibly not as it should be. The days to her Glenn are rapidly approaching and I'm torn. On one hand I want it to be here so we can get it over with. On the other hand I never want the day to come where I have to hand her back over to the surgical team that will try to save her life. I thought sending her to surgery the first time was hard, but I think this time will be even worse.

Meanwhile while Mommy continues to be a nervous wreck, Addy is happy as a clam. She is the sweetest and most lovable baby. All of our friends in the PICU were amazed at how big she had gotten while we were there for her cath. She is almost 12 pounds now, who said these babies were small?! Although we have to wake her up every three hours to eat, all in all we are quite lucky because baby girl likes a solid 12 hours of sleep. After her 9pm feed she happily snoozes until 9am in between feeds. She loves her mobile in her crib and just loves to laugh at the monkeys going round-and-round. Her smile can light up a room. She has found her hands but we have had to put an end to her chewing on them because she gags herself and then makes herself throw up. She loves to "talk" and seems to come up with new cooing noises almost everyday. In the true nature of both of her parents, the girl loves music. Her favorite bear puts her to sleep with music in a heartbeat, and she loves the lullabies on mommy's iphone.

Despite my best efforts, Addy has managed to get the cold that everyone else in the house currently has. So far she is fairing well though so our cardiologist is just on standby in case she starts getting into trouble. The bulb suction ruins her day but is working well enough for now to keep her trucking along. We have been spending a lot of cuddle time in the rocking chair the last day. Between the cath and now the cold, it has been a long week for our little fighter.

Pre-Glenn Cath

We went in for our pre-Glenn cath yesterday. They found one collateral that they coiled to prevent complications after her Glenn but it wasn't giving her in problems now. She did fantastic through the study but afterwards starting having desaturations into the 50-60s. She got really fluid overloaded in the cath lab but besides looking like marshmellow baby she still looked great but just wasn't holding her sats up. We were on and off of Oxygen overnight but have managed to stay off of it most of the night. Our chest xray looks good though so after consulting with the ICU team we have decided to go home. I will say that one of the perks of both of us being the kind of nurses we are is that people generally give us the benefit of the doubt that we can handle any problems we have with her. With that being said, I mean most people except some doctors who feel like because I don't have male parts I can't possibly know what I am talking about. Let us not even mention the fact that mommy actually has more pediatric AND cardiac experience than daddy- I'm just a nervous mother...huh. I guess he never heard of a mother's instinct...not to mention 6 years of ICU experience! So...we just got our discharge orders and are ready to go home. Daddy is changing her clothes for the second time today (first time she threw up and this time she peed all over them) and we are packing up our entire cart full of stuff that we had to bring for our 24 hour stay.
In the meantime, Hunter came home with a cold a few days ago. Yesterday Maci & I started getting sick, and today Daddy is not feeling so hot! Yay for us. Thank goodness Addy has had her Synagis shot already, and will get her next one tomorrow. Hunter is the only one in the house who has not had his flu shot but it's coming. I guess we are all quarantined to our room for the next few days in hopes that Addy doesn't get sick also. Even a cold could be bad news bears for Addy and put her back in the hospital. We are going to stop on our way home from the hospital to get one of those nifty battery powered nasal aspirators and some simply saline just in case. None of those flimsy blue bulb syringes for us, we need the true ICU style stuff to keep her at home at all costs!
So I guess even though there were a few ups and downs overnight, we have gotten off fairly easy this time as well. Our Glenn is tentatively planned for December 21st so we will keep everyone updated.

Weekly Checkup

We had our weekly doctors appt today. Addy is up to a whopping 10lb 12 oz, a 10oz weight gain in just one week! Who would think that an extra 10ml at each feed could make such a difference? We are getting ready for our cath next Tuesday at which point we will go stay with our friends in the PICU for the night. Getting a little nervous as the day approaches but ready to get it over with so we can move onto the next part of this phase. No other problems this week, Dr Kavanaugh says that she just loves my personality that is becoming more apparant each week as I win everyone over with my smiles & giggles.

Present Day

We are currently waiting on Addy to have her pre-Glenn cath on November 16th. They will look at her pressures and decide if she needs her next surgery sooner (not so good) or if she can wait until the middle of December when she is 4 months old. If she flies through the Glenn surgery like her Norwood, maybe we will actually be able to stop holding our breathe waiting for something to go wrong for awhile. Every day when I look at her I wonder if she is going to be here for one more day, week, month, or year. The fear that our baby girl is not going to make it through all of this is sometimes crippling. Her dad and I depend a lot on each other in these times and I thank god that our marriage has remained strong so far. Her brother, Hunter, and sister, Maci, have probably adjusted better than anyone. The simplicity of chlidren is amazing sometimes in their total faith that everything will be ok. It's kind of funny sometimes when other children ask what Addy's feeding tube is and her 4 year old sister replies "that's her tube she eats through" as though it is the most natural thing in the world and why didn't they know that. To them- daily medications, weekly doctors visits, and feeding tubes are perfectly normal and are no reason why they shouldn't love on their baby sister same as any other child. God love them...

How we arrived where we are

I have started this blog to provide an easier way to friends and family to follow our family and the journey we make through Addy's heart disease. A little history.... My husband Heath and I are both pediatric intensive care nurses with specialty experience in congenital heart disease. In April, we were 24 weeks pregnant and expecting a baby girl when we got the biggest bombshell of our lives. Our baby girl was going to have a complex heart defect, more specifically several of them. If ever I could have had the experience of my heart stopping it was when that doctor uttered those words. I felt like I couldn't even breathe. Our obstetrician told us that statisically we had a better chance of winning the lottery than her having this heart defect. The chances that her daddy and I would do what we do is even less than that.This was not at all what we had anticipated but we were getting ready to start a very long journey with our baby girl.

Since many of our friends are in the medical field I will give you the technical names for all that she has. Addy is essentially a single ventricle variation of hypoplastic right heart syndrome because that's the closest thing the doctors could figure out to call her. She actually only has a bulboventricle for an RV and a large left ventricle. We are hoping the fact that she has a large LV to pump will be her saving grace. She also has transposition of the great vessels, coarctation of the aorta, tricuspid atresia, and a vsd/asd. Yup...that's all, nothing major. Addy would need 3 surgeries before the age of 2 to give her any chance of survival. 

We anxiously awaited her arrival and on August 19, 2010 at 9:41 am Addyson Grayce Frazier joined us via C-section. She was more beautiful than I ever imagined. To our relief, she came out screaming bloody murder. As PICU nurses, Heath and I both knew what the possibilities we were about to face were. On August 25, at 6 days old, Addy had her first open heart surgery commonly known as the Norwood procedure. There is a 20% mortality associated with the procedure, and another 20% chance she won't make it to her second surgery at 4 months old. Talk about statistics that make you lose sleep at night...

To everyones surprise, Addy flew through the first surgery like no one imagined, us included. By day 4 post-op she came off the ventilator and at 11 days postop we went home! Oddly enough, Heath and I kept waiting for the other shoe to drop. Norwood babies just didn't do this well, and we couldn't forget that even when dealing with our baby girl. The first 2 weeks after going home we were back at the hospital 3 times for problems of medications and reflux. After that we finally got everything straightened out and have been doing well since.

We see our cardiologist once a week on Mondays. Dr Kavanaugh is our cardiologist and our guardian angel. She is the best doctor we could ask for and we credit her with a large part of why Addy continues to thrive. At this point in the process, we are all on the same page that at any point if Addy does not look perfect, she is readmitted to the hospital. So far Addy has followed this plan but it can change any day. Addy is currently the model child for the Norwood. Some days she has a slight dusky undertone, but for the most part she is a very pink baby! She is meeting all of her milestones so far and loves to smile and interact with anyone that will talk to her! As with most of these babies, she still has a feeding tube. She takes somewhere between 50-100% of her feeds by mouth but doesn't always get it all in. It is crucial for her to grow to be strong enough for her next surgery so she is on a strict every 3 hour feeding schedule. There is not much sleep around our house these days; Oh how I long to be able to feed on demand! So far, this is working well though and at our last checkup and was a whopping 10 lb 2 oz! She has her daddies' bright blue eyes and I think she is going to have my dark brown hair. I might be a little partial, but I think she is a beautiful baby.

This is only just a little bit of our history but we hope that everyone will continue to follow our family as we make this journey