We got to go home today! Our stay for the Glenn surgery was shorter than we expected, at only 5 days. Our cardiologist had warned that we would be in for about 7 to 10 days but she blew that out of the water! She did great throughout her surgery and did not have a single complication. She did not require any oxygen and we were quickly able to restart our home feeding schedule.
The thing we had the most trouble with this time was pain. I think it was much harder now than when Addy was a newborn and didn't know the difference between pain and pain free. We experience issues getting the floor nurses to give her adequate pain medicine. After 3 days of her being on the same dose with no problems for some reason they are still afraid they are going to over medicate her and she is going to stop breathing. We experienced several bad pain episodes when they witheld her meds in which she then would start to scream uncontrollably and cry until meds could start working. She would turn a darker color of blue than I have ever seen out of our girl and that bothers me if it is not necessary.We have tried to space her Oxycodone to every 6 hours today but she is overly tired at this point and that seems to exacerbate it. She has slept since we got home at 2 o'clock today but I am hoping that after a solid 18 hours of sleep she will be almost back to herself tomorrow.
It seems that this stage has gone by in the blink of an eye. I am ready to get our girl all healed up so we can get back to our everyday routine and start being able to treat her like a "real" baby.
On another note, Heath and I have decided to start a foundation after our experience with Addy. The money and donations that are given will be used to support families that are going through the experience of having a child with congenital heart disease. For now, we will be local and mostly helping families in the Nashville area but we will help anyone that needs it if possible. We will accept donations of money, toys, blankets, and anything else that would be helpful to families during this time. Our help will be based on referrals from hospital personnel and by word of mouth and tailored exactly for what is most beneficial for each family. We feel like by our place in the hospital Our plan is to actually provide the support services ourself and not directly through the hospital. Although there is help available through the hospital for some families, as a working and middle class family, we found little support for what was still a very hard time emotionally and financially. Any donations will gladly be accepted as soon as we get our legal stuff taken care of.
Our Congenital Heart Warrior!
Rockin her Red!
Sunday, December 26, 2010
Friday, December 24, 2010
3 days post op
We are now 72 hours post op Glenn. Addy is doing really well and ahead of schedule for going home. She still has her chest tube but the output is minimal so it will most likely be pulled out tomorrow. After that, we will have to stay 24 hours more and we will be discharged as long as she has no complications! As with the Norwood, she has sailed through this surgery with flying colors! Her perfusion is great and her breathing is comfortable.
Our biggest challenges right now are pain management. It is definately harder now than when she was a newborn and did not know life without pain. Also, all of the people in the hospital that come in and touch her I think scare her so it is much more difficult to be able to leave her. As a newborn she slept all the time so she scarcely knew we were there but now I cannot bear to leave her even to run necessary errands if she is awake. Her being the very active child that she is probably makes her pain a little worse since she doesn't just lay still anymore. We are giving her round the clock Tylenol and Oxycodone to help with the pain and for the most part it is well controlled except for a few breakthrough episodes.
Our biggest challenges right now are pain management. It is definately harder now than when she was a newborn and did not know life without pain. Also, all of the people in the hospital that come in and touch her I think scare her so it is much more difficult to be able to leave her. As a newborn she slept all the time so she scarcely knew we were there but now I cannot bear to leave her even to run necessary errands if she is awake. Her being the very active child that she is probably makes her pain a little worse since she doesn't just lay still anymore. We are giving her round the clock Tylenol and Oxycodone to help with the pain and for the most part it is well controlled except for a few breakthrough episodes.
Wednesday, December 22, 2010
Post op Day 1 of Glenn
Well, Addy had her Glenn procedure yesterday. It went even faster by expected with only a 44 minute bypass time and no cross clamp (for all our nurse friends!). Dr Bischell was done by 10:30 in the morning and she was moved back to our home in the PCICU. There were absolutely no complications with the surgery. He said that she had no scarring and her bleeding was absolutely minimal. Although we originally hoped that she would extubate yesterday she hasn't quite made it off the ventilator yet. She has a left sided effusion (which isn't uncommon) today and got quite fluid overloaded throughout the night until they restarted her diuretics. Her vent rate and support is weaned to minimal settings except she is requiring 60% oxygen, probably because of the fluid. If we can get her diuresed today we are still optimistic that she will come of the ventilator this afternoon. She is on a precedex infusion for sedation to keep her comfortable and she gets Morphine for her pain when she needs it. Our Addy has always been a very "pink" heart baby but over the last few weeks the signs that she was ready for this surgery. She didn't want to eat as much and it was apparent that she was working hard to breathe. Her hands and feet were more dusky and sweaty than they used to be. Now it is amazing how pink she is again. Her hands and feet are warm and dry, no longer purple looking!
It is hard to believe that yesterday we actually had the Glenn. It seems like we just took her home last week but it really has been 4 months. All of her "aunts & uncles" in the ICU can't believe how big she has gotten since we were here last. Our cardiologist really put it into perspective yesterday when she told us that we left that second 20% mortality statistic at the door yesterday. We have now overcome the 40% mortality associated with this disease before her Glenn. Although we are not out of the woods yet things are expected to be much better after this surgery. Hopefully after we get her home she will be allowed to go to feeding on demand and we will be done with having a feeding tube in her nose all the time! We have seen our cardiologist at least once a week since we went home after the Norwood but our cardiologist told us yesterday that after her initial post operative visit we will only have to see her every 3 months! I couldn't believe it but it really put it into perspective that they are that much LESS worried about her after this procedure. We have had so much support through this journey from family and friends that we appreciate so much. Everyone has sent out prayers for her and our family that have really helped. Our friends in the unit have been wondeful and it has made dealing with the difficult part of being the patient instead of the nurse a lot easier. It is incredibly difficult to go from the nurse side of the bed to the patient/parent side. We are used to being the one working on the patients, not the ones that are sent out to the waiting room when something happens. Thankfully, we have come to an agreement this time that we will not be kicked out of the room for intubations and extubations, but I will still leave for sterile procedures if needed. There are times where our knowledge as nurses has been a mixed blessing but overall I really believe that God led Heath and I to be cardiac nurses for a reason, which we now know. Our Addy needed us to be able to fight for her so that she can grow up and be a poster child for how wonderful a child with half a heart can live! We thank everyone for your support and prayers and love you all!
It is hard to believe that yesterday we actually had the Glenn. It seems like we just took her home last week but it really has been 4 months. All of her "aunts & uncles" in the ICU can't believe how big she has gotten since we were here last. Our cardiologist really put it into perspective yesterday when she told us that we left that second 20% mortality statistic at the door yesterday. We have now overcome the 40% mortality associated with this disease before her Glenn. Although we are not out of the woods yet things are expected to be much better after this surgery. Hopefully after we get her home she will be allowed to go to feeding on demand and we will be done with having a feeding tube in her nose all the time! We have seen our cardiologist at least once a week since we went home after the Norwood but our cardiologist told us yesterday that after her initial post operative visit we will only have to see her every 3 months! I couldn't believe it but it really put it into perspective that they are that much LESS worried about her after this procedure. We have had so much support through this journey from family and friends that we appreciate so much. Everyone has sent out prayers for her and our family that have really helped. Our friends in the unit have been wondeful and it has made dealing with the difficult part of being the patient instead of the nurse a lot easier. It is incredibly difficult to go from the nurse side of the bed to the patient/parent side. We are used to being the one working on the patients, not the ones that are sent out to the waiting room when something happens. Thankfully, we have come to an agreement this time that we will not be kicked out of the room for intubations and extubations, but I will still leave for sterile procedures if needed. There are times where our knowledge as nurses has been a mixed blessing but overall I really believe that God led Heath and I to be cardiac nurses for a reason, which we now know. Our Addy needed us to be able to fight for her so that she can grow up and be a poster child for how wonderful a child with half a heart can live! We thank everyone for your support and prayers and love you all!
Thursday, December 16, 2010
5 days before the Glenn surgery
We were admitted to 6c tonight because Ms Addy has not been behaving herself lately. Over the last month she has progressively had to work a little harder to do her normal activities. She doesn't seem to want to eat as much as she used to but we mostly have attributed that to the fact that we are pumping so much into her every 3 hours around the clock. Overall though, her growth has been great and weighed in at a whopping 13 lbs 2 ounces this week. The subtle changes we have noticed are not unexpected as she grows closer to needing her Glenn surgery.
Monday when we saw Dr Kavanaugh she couldn't feel her pulses quite as well and she was working a little harder to breath so that bought us an extra echo, which looked great. Over the last two days though she has just not quite been herself. She is napping much more and does not want to eat anything by mouth at all. Her oxygen saturations are dipping less than 75% which we don't like too much. She is more dusky and her hands and feet are cool and clammy pretty often. From Monday to today we only gained 1 oz so that would not have made her gain enough even by next week. So of course, as Dr Kavanaugh says, "If she does not look perfect, she comes to stay with us"....so here we are.
Of course since we have been here Addy has done nothing but charm everyone with her adorable smile and good nature. We are here for the night so far but if tomorrow nothing has changed and we have no answers we may be here until her surgery. We really didn't want to stay all weekend but we will do whatever has to be done. At this point Heath and I are both ready to get this surgery over with so we can quit living on pins and needles associated with being between the Norwood and Glenn. Addy is telling us that she is as ready as we are. Although on one hand we hate that we will be in the hospital on Christmas, if all goes well it will be like a Christmas present to us to have her doing better! Hunter and Maci will be gone until Christmas morning and then we will do a "Santa" at home with them and at the hospital with her. We have so many good friends and family that care about her that we are very fortunate. Addy is very loved and I know in my heart that God has special plans for her and our family. I will keep everyone updated as we find out new information.
Monday when we saw Dr Kavanaugh she couldn't feel her pulses quite as well and she was working a little harder to breath so that bought us an extra echo, which looked great. Over the last two days though she has just not quite been herself. She is napping much more and does not want to eat anything by mouth at all. Her oxygen saturations are dipping less than 75% which we don't like too much. She is more dusky and her hands and feet are cool and clammy pretty often. From Monday to today we only gained 1 oz so that would not have made her gain enough even by next week. So of course, as Dr Kavanaugh says, "If she does not look perfect, she comes to stay with us"....so here we are.
Of course since we have been here Addy has done nothing but charm everyone with her adorable smile and good nature. We are here for the night so far but if tomorrow nothing has changed and we have no answers we may be here until her surgery. We really didn't want to stay all weekend but we will do whatever has to be done. At this point Heath and I are both ready to get this surgery over with so we can quit living on pins and needles associated with being between the Norwood and Glenn. Addy is telling us that she is as ready as we are. Although on one hand we hate that we will be in the hospital on Christmas, if all goes well it will be like a Christmas present to us to have her doing better! Hunter and Maci will be gone until Christmas morning and then we will do a "Santa" at home with them and at the hospital with her. We have so many good friends and family that care about her that we are very fortunate. Addy is very loved and I know in my heart that God has special plans for her and our family. I will keep everyone updated as we find out new information.
Wednesday, December 1, 2010
Fun Days
Our Glenn has been scheduled for December 21st, with pre-op on the 20th. Hunter and Maci will be gone until Christmas Day. We are ready to get this phase over with so we can get back to normal.
I restarted work this week with mixed emotions. On one hand I am so glad to get out of the house and once again have adult interaction. On the other hand Addy is to the stage where everyday she does something new! This week she has gone from just kicking and playing around in her pack andp lay to fully sitting up on her own in our laps and trying to roll over! She will no longer tolerate laying down or being held for more than a few minutes. We went today and bought her Christmas present but had to give it to her early since we won't get to use it while she is in the hospital. We got her a jumparoo bouncer and she absolutely loves it! She bounced and squealed in delight for a solid 45 minutes before getting tired of it! She is developing such a personality! Today was also our first time to try rice cereal. Dr Kavanaugh really doesn't want her to eat much food before her surgery but our girl needs to eat! She lapped it right off the spoon like she had been doing it for weeks. We are also pretty sure that Addy is teething since she constantly stuffs her entire hand into her mouth and is drooling worse than our bulldogs.
Although I hate to miss a single minute of these moments, Mommy must go back to work. We are trying to seal a contract on a bigger house for us at the moment. We are quite excited and it would be great to have a home where we are not tripping over one another. We won't move until the spring to give Addy time to recover but none the less it is still very exciting! Well, that is most of the new news for now, I will keep everyone updated!
I restarted work this week with mixed emotions. On one hand I am so glad to get out of the house and once again have adult interaction. On the other hand Addy is to the stage where everyday she does something new! This week she has gone from just kicking and playing around in her pack andp lay to fully sitting up on her own in our laps and trying to roll over! She will no longer tolerate laying down or being held for more than a few minutes. We went today and bought her Christmas present but had to give it to her early since we won't get to use it while she is in the hospital. We got her a jumparoo bouncer and she absolutely loves it! She bounced and squealed in delight for a solid 45 minutes before getting tired of it! She is developing such a personality! Today was also our first time to try rice cereal. Dr Kavanaugh really doesn't want her to eat much food before her surgery but our girl needs to eat! She lapped it right off the spoon like she had been doing it for weeks. We are also pretty sure that Addy is teething since she constantly stuffs her entire hand into her mouth and is drooling worse than our bulldogs.
Although I hate to miss a single minute of these moments, Mommy must go back to work. We are trying to seal a contract on a bigger house for us at the moment. We are quite excited and it would be great to have a home where we are not tripping over one another. We won't move until the spring to give Addy time to recover but none the less it is still very exciting! Well, that is most of the new news for now, I will keep everyone updated!
Friday, November 19, 2010
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.
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.
Wednesday, November 17, 2010
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.
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.
Monday, November 8, 2010
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.
Saturday, November 6, 2010
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
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
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