Thursday, December 31, 2009
Surgery Date Set
Got the call from CHOP- we are scheduled for March 5th. We need to be there early on March 4th for a pre-visit where they run a number of tests to make sure he is 100% healthy for surgery and then they tell us the time for the surgery the following day. I am slightly freaking out already, it is going to be here so quick. But that also means he is going to be healthy that soon too. What a way to ring in the New Year- not what we imagined when we first became pregnant! We are staying in, making a nice dinner and I am putting Jersey Shore on, despite Alex's protests. Liam likes it :o)
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Christmas Weight Gain
A quick update- had Liam's pediatrician appointment yesterday and it couldn't have gone better. He gained 11 ounces in a week- dear Lord- and is now 7 lbs, 9 oz. That also moves him up on the growth chart to the 25% line. It will mean he will probably be about 10 and a half pounds at the time of his surgery. His oxygen levels were great, 88-92. The doctor was so impressed with him yesterday she gave us 2 weeks off! The next appointment we have is his 2 month check up/vaccines and then as long as he has steady weight gain of 4 oz a week over the next two, we probably don't need to come in very much at all! Liam hits the 6 week mark tomorrow which means I can begin taking him out, occasionally, not a lot. We still need to keep him home for the most part until surgery but the first 6 weeks were the most dangerous of getting infections and he is doing well, with the occasional congested nose. Head's up, Fair Oaks Santa, we will be the first people in line tomorrow!
We talked about his post op care and that too is a lot better than what we had thought. Once we are discharged from CHOP, we will need to do a follow up with our cardiologist about a week later. Our cardiologist will monitor Liam, particularly based on the medications he will be on. Once that piece of it is over, perhaps a few weeks of care, we won't need to see the cardiologist except every 4-6 months. The pediatrician will make sure his wound heals well and then it will only be his normal well visits. So by April, we can be a normal infant schedule and as soon as his wound his healed, he will be like every other almost 6 month old. So excited! It will be a Merry Christmas and New Year indeed...
Saturday, December 19, 2009
Thursday, December 17, 2009
If it can be done, it can be done here.
We will upload pictures later but wanted to give everyone an update from our recent trip to Philadelphia.
Our trip was a success- first, little man travels like a champ and was an angel the entire time. We got to the Ronald McDonald House about 7pm on Tuesday night. Its an amazing place. The original home is from the 1800's and belonged to the owner of the Philadelphia Inquirer. We pulled up and were blown away by the holiday spirit- the Christmas lights sparkled across the entire property, Ronald's statue was waving at us and it just looked like a happy place. We were checked in and given a tour. They have so many play rooms, one is a dress up area with puppets. We let Liam play and will upload that picture. The teen arcade was near our room (Ms. PacMan-woot!), there is also a gym, media areas, library, business center, etc. They have a kitchen where volunteers come nightly and make a home cooked meal for the families staying. We got there as they were cleaning up but were able to have a plate of warm food before settling in for the night. Very much appreciated. It was tough looking at the other children there. Liam was by far the youngest there. Alex put it best when we saw a little boy at dinner, he obviously was doing rounds of chemo, had no hair, etc- kids should never have to go through this pain. He was sitting at a table with his Mom eating a Lunchable, like any other 5 year old little boy. I'm thankful Liam won't remember this part of his life, other than knowing what the scar on his chest is from.
We got up very early on Wednesday and headed to CHOP, which is about a mile from the RMH. My mom came down and brought my grandmother- Liam got to meet his great grandma. It was so nice to see her hold him and have a chance to meet her first great grandchild. We all had breakfast before heading upstairs to the clinic. The clinic consisted of a consultation with a cardiologist, an ultrasound of his heart and sitting down with the surgeon. The entire team was very professional, with the cardiologist walking us through care leading up to surgery and afterwards. She suggested the 4-5 month time frame but made it clear that he could start having "spells" at 4 months. We both want to avoid him having any spells at all to save him from having any pain, set back, etc. Spells are when infants turn purplish blue and sometimes pass out. Its not something we felt we could also deal with very well. Because of this information, we decided to schedule the surgery right before the 4 month mark allowing him to grow as much as possible.
The echocardiagram was interesting. Apparently most infants sleep through it and just lay there. Well...Liam was wide awake, going number 2, kicking, pulling off the EKG wires..enough so, that the technician got "sweets" to help calm him down. My mom was offended since the package said it was to soothe distressed infants. He wasn't distressed, he just wanted to play! The results of the sonogram were good though- nothing has changed and it was a textbook case of tetralogy, although it sounds like his pulmonary valve is very tiny and will need a patch during surgery, rather than just widening it.
From here, Katie who has been coordinating our care and has been amazing to work with, took us on a tour of the CICU and surgical center. The blog title is the first thing I noticed when walking into the surgery waiting area. Can that be a better quote to read? She walked us down the hallway where we will hold Liam and walk him to the surgical table and hand him over. I would be lying if I didn't say I was tearing up and trying to hold it together. I felt very lightheaded just imagining that morning. We were able to see the recovery area and where he as an infant would be. I am able to sleep and stay with him the entire time during his stay which made me feel some relief. They have a few parent rooms like the RMH for parents to eat, get online, even a pumping room for Mom's. We then saw the step down unit, where he would go after the chest tubes are removed and he is downgraded from ICU. Hopefully that will happen within 2 days. Overall, he will most likely be there for a full week. The only high risk he has going into surgery is the Down syndrome.
We then met Dr. Spray. I have spent a lot of time reading and researching, had a long list of questions to ask and had told myself I would make very clear my concerns for Liam. Whatever happened to that steel resolve, I don't know because as soon as we sat down with him, I forgot it all. During the earlier sonogram, the technician told us that Dr. Spray was one of the 3 top world surgeons. I think that may have scared me a little and put me more in awe with him, and the fact that we were going to talk to him. In fact, it was delayed because he was in surgery and his assistant told us, he would not be up until the baby was comfortable and he had spent time with the family. That alone impressed me. I want nothing more to hear how Liam's surgery went and what Dr. Spray would see- so that he refuses to leave until the family is calm and informed, what a great bedside manner.
Dr. Spray does 50-60 surgeries like Liam's a year and he came in with a good air of confidence about Liam, his future and what he needed to do to repair him. The only question I asked was the one I think most parent's probably have- what is the mortality rate? He said in general, it is 1% but that is when infections occur, when something odd happens and it is extremely rare. He said there was also a small chance of a future surgery if he was unable to do a total repair, which he did not think would be an issue and this is the only time I made myself hopefully clear. I replied that if he needed to go back in, I can handle that but at the end of the day, I want my son alive. I know the man knows this but this is my baby, not just a patient and the good thing, I think he got that. He was compassionate, more so than I expected. He put us all at ease because we barely said anything. Probably the most important thing we heard was we were lucky- Liam was born with the right parts in the right place, they just need a tune up. Many kids aren't this lucky with congenital heart defects. This was a straightforward repair. It is still open heart surgery but hopefully they can do the open heart piece in only 30 minutes- and that's the key to recovery. The quicker they repair, the less time on any machines.
After we met with him, Katie did tell us that Dr. Spray hadn't lost a patient in 2 years for this surgery, which was a great relief to hear. Another question we were worried about was that many kids have to relearn all that they knew after the surgery. Our biggest concern was eating since that is the core of his strength, both for him to maintain and gain weight but also for his Down syndrome therapy. She reassured us that isn't so and they have not found that in their surgeries.
We spent about 6 hours there and we probably won't be back until Liam goes in for surgery. There is a chance he will go earlier if his oxygen levels begin to dip but we are hoping March is the time. After we finished the clinic, the five of us went across the street for lunch and met Brian, Mary and their daughter Abby. Brian and Alex have been friends since childhood and Mary has known Alex since high school I believe. Abby really is one of the cutest little girls- we haven't seen her since her baptism, Alex is her godfather and she has grown so much. She is a little person now, not a baby. Brian works with a lot of DS children and even TOF children for therapy, which is a great resource for us to utilize. It was nice to catch up and talk, although it was way too short.
We all parted ways around 3 and headed home. It took us about 5 hours to get home, we just hit horrendous traffic in MD because a car blocked 95. Yay. But we are home and we feel that this is the right place for Liam to get his surgery done. The team and the facility are amazing. I've never been to a children's hospital and just the decorations and colors, it blew me away. It wasn't a cold place at all and that made me feel good for Liam. He deserves the best and we want this to be the only open heart surgery he needs to go through. I think we can do that at CHOP and get us back to a normal lifestyle. No more checking his breathing constantly and his color, several appointments a week, not being able to let him cry, etc.
After his recovery, the restrictions are going to lift and we are going to finally be able to take him out to the store and to the park. That seems silly but I am a proud mom and I can't wait to show him off and just do the everyday errands with him. Its going to be awesome- the little things are exactly what matters. Its been so hard not showing him the world but I can't wait to throw a huge party for him when this is all done. So pony rides and moon bounces, here we come!
Our trip was a success- first, little man travels like a champ and was an angel the entire time. We got to the Ronald McDonald House about 7pm on Tuesday night. Its an amazing place. The original home is from the 1800's and belonged to the owner of the Philadelphia Inquirer. We pulled up and were blown away by the holiday spirit- the Christmas lights sparkled across the entire property, Ronald's statue was waving at us and it just looked like a happy place. We were checked in and given a tour. They have so many play rooms, one is a dress up area with puppets. We let Liam play and will upload that picture. The teen arcade was near our room (Ms. PacMan-woot!), there is also a gym, media areas, library, business center, etc. They have a kitchen where volunteers come nightly and make a home cooked meal for the families staying. We got there as they were cleaning up but were able to have a plate of warm food before settling in for the night. Very much appreciated. It was tough looking at the other children there. Liam was by far the youngest there. Alex put it best when we saw a little boy at dinner, he obviously was doing rounds of chemo, had no hair, etc- kids should never have to go through this pain. He was sitting at a table with his Mom eating a Lunchable, like any other 5 year old little boy. I'm thankful Liam won't remember this part of his life, other than knowing what the scar on his chest is from.
We got up very early on Wednesday and headed to CHOP, which is about a mile from the RMH. My mom came down and brought my grandmother- Liam got to meet his great grandma. It was so nice to see her hold him and have a chance to meet her first great grandchild. We all had breakfast before heading upstairs to the clinic. The clinic consisted of a consultation with a cardiologist, an ultrasound of his heart and sitting down with the surgeon. The entire team was very professional, with the cardiologist walking us through care leading up to surgery and afterwards. She suggested the 4-5 month time frame but made it clear that he could start having "spells" at 4 months. We both want to avoid him having any spells at all to save him from having any pain, set back, etc. Spells are when infants turn purplish blue and sometimes pass out. Its not something we felt we could also deal with very well. Because of this information, we decided to schedule the surgery right before the 4 month mark allowing him to grow as much as possible.
The echocardiagram was interesting. Apparently most infants sleep through it and just lay there. Well...Liam was wide awake, going number 2, kicking, pulling off the EKG wires..enough so, that the technician got "sweets" to help calm him down. My mom was offended since the package said it was to soothe distressed infants. He wasn't distressed, he just wanted to play! The results of the sonogram were good though- nothing has changed and it was a textbook case of tetralogy, although it sounds like his pulmonary valve is very tiny and will need a patch during surgery, rather than just widening it.
From here, Katie who has been coordinating our care and has been amazing to work with, took us on a tour of the CICU and surgical center. The blog title is the first thing I noticed when walking into the surgery waiting area. Can that be a better quote to read? She walked us down the hallway where we will hold Liam and walk him to the surgical table and hand him over. I would be lying if I didn't say I was tearing up and trying to hold it together. I felt very lightheaded just imagining that morning. We were able to see the recovery area and where he as an infant would be. I am able to sleep and stay with him the entire time during his stay which made me feel some relief. They have a few parent rooms like the RMH for parents to eat, get online, even a pumping room for Mom's. We then saw the step down unit, where he would go after the chest tubes are removed and he is downgraded from ICU. Hopefully that will happen within 2 days. Overall, he will most likely be there for a full week. The only high risk he has going into surgery is the Down syndrome.
We then met Dr. Spray. I have spent a lot of time reading and researching, had a long list of questions to ask and had told myself I would make very clear my concerns for Liam. Whatever happened to that steel resolve, I don't know because as soon as we sat down with him, I forgot it all. During the earlier sonogram, the technician told us that Dr. Spray was one of the 3 top world surgeons. I think that may have scared me a little and put me more in awe with him, and the fact that we were going to talk to him. In fact, it was delayed because he was in surgery and his assistant told us, he would not be up until the baby was comfortable and he had spent time with the family. That alone impressed me. I want nothing more to hear how Liam's surgery went and what Dr. Spray would see- so that he refuses to leave until the family is calm and informed, what a great bedside manner.
Dr. Spray does 50-60 surgeries like Liam's a year and he came in with a good air of confidence about Liam, his future and what he needed to do to repair him. The only question I asked was the one I think most parent's probably have- what is the mortality rate? He said in general, it is 1% but that is when infections occur, when something odd happens and it is extremely rare. He said there was also a small chance of a future surgery if he was unable to do a total repair, which he did not think would be an issue and this is the only time I made myself hopefully clear. I replied that if he needed to go back in, I can handle that but at the end of the day, I want my son alive. I know the man knows this but this is my baby, not just a patient and the good thing, I think he got that. He was compassionate, more so than I expected. He put us all at ease because we barely said anything. Probably the most important thing we heard was we were lucky- Liam was born with the right parts in the right place, they just need a tune up. Many kids aren't this lucky with congenital heart defects. This was a straightforward repair. It is still open heart surgery but hopefully they can do the open heart piece in only 30 minutes- and that's the key to recovery. The quicker they repair, the less time on any machines.
After we met with him, Katie did tell us that Dr. Spray hadn't lost a patient in 2 years for this surgery, which was a great relief to hear. Another question we were worried about was that many kids have to relearn all that they knew after the surgery. Our biggest concern was eating since that is the core of his strength, both for him to maintain and gain weight but also for his Down syndrome therapy. She reassured us that isn't so and they have not found that in their surgeries.
We spent about 6 hours there and we probably won't be back until Liam goes in for surgery. There is a chance he will go earlier if his oxygen levels begin to dip but we are hoping March is the time. After we finished the clinic, the five of us went across the street for lunch and met Brian, Mary and their daughter Abby. Brian and Alex have been friends since childhood and Mary has known Alex since high school I believe. Abby really is one of the cutest little girls- we haven't seen her since her baptism, Alex is her godfather and she has grown so much. She is a little person now, not a baby. Brian works with a lot of DS children and even TOF children for therapy, which is a great resource for us to utilize. It was nice to catch up and talk, although it was way too short.
We all parted ways around 3 and headed home. It took us about 5 hours to get home, we just hit horrendous traffic in MD because a car blocked 95. Yay. But we are home and we feel that this is the right place for Liam to get his surgery done. The team and the facility are amazing. I've never been to a children's hospital and just the decorations and colors, it blew me away. It wasn't a cold place at all and that made me feel good for Liam. He deserves the best and we want this to be the only open heart surgery he needs to go through. I think we can do that at CHOP and get us back to a normal lifestyle. No more checking his breathing constantly and his color, several appointments a week, not being able to let him cry, etc.
After his recovery, the restrictions are going to lift and we are going to finally be able to take him out to the store and to the park. That seems silly but I am a proud mom and I can't wait to show him off and just do the everyday errands with him. Its going to be awesome- the little things are exactly what matters. Its been so hard not showing him the world but I can't wait to throw a huge party for him when this is all done. So pony rides and moon bounces, here we come!
Monday, December 14, 2009
Road Trip
Picture is from today..I finally found a winter hat that will stay on. Liam has been taking his impersonation of Maggie from the Simpsons very seriously with the pacifier and if we lose this one, I'm in deep trouble.
It is sad but I am counting our trip to Children's Hospital of Philadelphia as a road trip because its very likely going to be the only one we go on for awhile. I even bought junk food for Alex and I for that whole 2.5 hour drive!
I am starting to pack and put things together for our visit, Alex and I are basically bringing an outfit and overnight stuff. Liam however needs a lot more so I am pulling it all together and checking my list. Also trying to find an outfit for myself to wear because not a lot fits that doesn't scream pregnant lady. I have been living in sweats and two pairs of stretchy pants and I was hoping to wear something with a waistband but I think that will still be a while, especially since I am on a no exercise restriction. Boo. Guess I'm going to be very un-Heidi Klum like and will be wearing prego clothes.
We made a request at Ronald McDonald House in Philly, but we won't find out until the day of arrival if they have room. We will be most likely staying there during Liam's CHOP surgery and recovery period. They have a great rule of once you check in, they don't kick you out unless your child is discharged and sent home. So next time you visit the golden arches and order yourself a number 10, my pregnancy favorite, add some change to the Ronald McDonald jars. We just found our new charity of choice.
My mom is going to meet us at the hospital and my grandma too- she hasn't met Liam yet and it is her first great grandchild. She can't come to the clinic with us but she said her usual line of I'm fine..hah. Hoping we will also get a chance to visit with Brian, one of Alex's good friends who also does physical therapy on babies very much like Liam. It would be great to get his opinion and just to see him, Mary and Liam's girlfriend, Abby.
In addition to preparing for the visit and clinic on Wednesday, Liam had another weigh in today and is up to 6lbs, 14 oz. His estimated birth weight was 6lbs, 13 oz so a month later, he is there. Sigh. Great news that his oxygen levels were higher than his normal at 91..it was great to hear. Doctor thinks he is doing wonderful and we will weigh in again next week.
We will check in after Philly and hopefully have more news on surgery dates and expectations. Say some prayers for the little man.
Tuesday, December 8, 2009
Pediatrician Update
We had another successful visit today with Dr. Chung, who we really have taken to. Liam is up to 6 lbs, 8 oz. When he was born, he was 5 lbs, 6 oz but had dropped to 5 lbs, 2 oz over his first few days. When we left the NICU on November 20th, he was back up to his birth weight. He was originally charted at 12% growth percentile on a Down syndrome chart and is now up to the 20% percentile. He won't be "allowed" to gain too much between now and the surgery or move to another percentile because retaining too much fluid is harmful with open heart surgery. But if we stay on track for surgery in March, he should be just about 10 lbs. Keeping our fingers crossed!
The other key weekly check we do with Dr. Chung was to have his oxygen saturation levels checked and they are consistently in the mid 80s. Most babies are at 97-100 but because of his particular heart condition, he should be 80 or higher. If this number begins to get lower than this, it will be go time for the surgery. It measures the amount of oxygenated blood being pushed out to his body- all adults are typically 94 and up according to the cardiologist.
We have learned some tricks to monitor him at home without an actual electronic monitor- if he begins getting purple in the face (when not pooping because when he goes, he is a little old man who grunts and scrunches, funniest thing ever, all he needs is the paper to read). The blue/purple color means his levels have dropped. We are supposed to take his legs, bend them and push them towards his middle which helps bring the levels up. Also, raising him up so he is sitting or on our shoulder as if he is burping is supposed to bring those levels back up. However, most "tet" babies do not have blue spells until they are about 8 months old. We haven't seen one yet and hope that continues!
In the not so great news but minimally concerned compared to the rest of his health, little man looks to have a bellybutton hernia and apparently, his left testicle has not descended yet. Some babies take about a year to drop. These might need surgical repair as well and we are making appointments to meet with those specialists. Poor thing, he just isn't getting an easy start but with a repaired heart, he will do great.
Since being released from the NICU on November 20th, we have now had 8 appointments with various doctors. Liam's fantasy team as I refer to it includes pediatrician, cardiologist, geneticist, soon to be surgical team, urologist and another surgeon re: hernia. He also will be meeting with early intervention specialists which includes a speech therapist, occupational therapist and physical therapist. He has been a gem at the doctor's so far and only seems to mind having his blood taken or temperature taken from you know where..as as his official general manager, I see a pennant in the near future much like the Yankees.
Saturday, December 5, 2009
Links
Here are some of the best links we have found in our research if you want to learn more:
http://en.wikipedia.org/wiki/Tetralogy_of_Fallot
Liam has the first three issues listed here.
http://www.chop.edu/service/cardiac-center/our-services/fetal-heart-program.html
CHOP is #2 in the country, we will be visiting them in 2 weeks.
http://health.usnews.com/health/best-hospitals/childrens-hospitals/heart-and-heart-surgery-hospital-rankings/
http://www.dsanv.org/
http://www.chop.edu/healthinfo/tetralogy-of-fallot.html
http://www.littlehearts.org/
http://www.sciencedaily.com/releases/2007/12/071217092926.htm
And this last one is special to us- another little boy just had the same surgery Liam needs this week. His parents have done an amazing job blogging and inspired ours. Since Liam is a bubble boy until after surgery and can't meet our family and friends, we thought this was a good way to introduce him to the world. Please read about Noah- his surgery is with the same surgeon we are considering at CHOP.
http://noah-and-his-heart.blogspot.com/
http://en.wikipedia.org/wiki/Tetralogy_of_Fallot
Liam has the first three issues listed here.
http://www.chop.edu/service/cardiac-center/our-services/fetal-heart-program.html
CHOP is #2 in the country, we will be visiting them in 2 weeks.
http://health.usnews.com/health/best-hospitals/childrens-hospitals/heart-and-heart-surgery-hospital-rankings/
http://www.dsanv.org/
http://www.chop.edu/healthinfo/tetralogy-of-fallot.html
http://www.littlehearts.org/
http://www.sciencedaily.com/releases/2007/12/071217092926.htm
And this last one is special to us- another little boy just had the same surgery Liam needs this week. His parents have done an amazing job blogging and inspired ours. Since Liam is a bubble boy until after surgery and can't meet our family and friends, we thought this was a good way to introduce him to the world. Please read about Noah- his surgery is with the same surgeon we are considering at CHOP.
http://noah-and-his-heart.blogspot.com/
NICU Stay
The picture is Alex changing his first dirty diaper.
Liam stayed a total of 11 days in the NICU and was discharged on November 20th, just in time for Thanksgiving. He was a little impatient, like Mommy and wanted to leave earlier.
The biggest obstacle was teaching him how to eat. He had a feeding tube but after the first few days, no longer needed to use it. So he decided to rip it out himself. Twice. The nurses kept telling us he was one of the feistier guys they had.
Then after he began eating, they began to slow down the fluids for his IV and completely turn the fluids off. Well, he decided to rip that out of himself as well. Sigh.
The circumcision was probably the worst thing we experienced at the hospital. Oops, they forgot to give him topical anesthetic or sweets, sugar water helps numb their pain level. My little man is a strong kid, he just wanted to get the hell out of dodge after that one.
Alex and I decided he should save his time off for the surgery and go back to work immediately. He would drop me off every morning around 8am at the hospital and he would come to NICU immediately after work, about 6pm. We then left every night around 11pm. It was a lot of long days but we both learned a ton from the NICU staff and the nurses there are angels. I cannot say enough about how wonderful they treated Liam and Mommy, especially because I probably asked a ton of questions and took over like a Mama Bear. It gave me time to call around the country and learn more about his surgery, more than I would have at home as I have learned since.
NICU is one of the tougher obstacles I've endured and any parent who has seen their child hooked up to machines, in incubators, uncomfortable and inconsolable, I have the most respect in the world for you. Liam was not in terrible shape and we learned we could be in a worse place. Again, unbelievably thankful for the little man and the Big one watching over us.
Diagnosis
Statistics was one of my favorite classes- I loved being able to rely on the numbers when looking at elections or opinion polls. So let's take a look at the statistics.
At 13 weeks, I did a test called nuchal transluceny. It tests for two things- chromosomal issues with the baby such as DiGeorge or Down syndrome. It also tests for any major heart conditions. We left with a 1 in 50,000 chance for Down as we were told and no heart issues detected. It is 99.5% accurate. The test was done at a specialist in the INOVA system here in Virginia. (Alex first quipped..well someone's gotta be that .5%. Oh indeed.)
From the first trimester forward, I had an ultrasound done almost every 2 weeks and then every week starting in the third trimester. I think all together, at least 20 scans. I additionally did scans at two different high risk specialists at two different hospitals, several times. Why all the scans? Because of my diabetes, the biggest concern was to make sure the baby did not get too big. Towards the end of the pregnancy, 34 weeks, Liam's cord pressure began acting up which got me sent to the specialist several times as well. From 16 weeks forward, his diagnosis would have been visible on every ultrasound. Additionally, those cord pressure issues were directly related to his diagnosis and was missed by 2 different hospitals.
So, the actual roller coaster. When the NICU doctor walked in a mere 8 hours after we had delivered Liam, we were told that his oxygen levels were back to a good place and he no longer needed to be on it. My immediate reaction was to ask if we could bring him back to our room. He shook his head no.
Then, with a half smile on this face, he said " I also wanted to let you know that your son has a strong heart murmur and it's possible it may need surgery to fix it, depending on what a cardiologist can find. Oh, and we are pretty confident he has Down syndrome."
I was holding Liam and all I could do was stare at him. He was small, 2 lbs smaller than what was seen on the last ultrasound 24 hours before we delivered, but he seemed healthy and in fact, was moving a bit and looking around already. I began to cry and couldn't stop. I was scared of both diagnosis' to be honest and it's not meant to be offensive to anyone with or raising a child with Down syndrome. I know the dedication and the lifetime commitment it takes- my uncle has Down syndrome and my grandmother and aunts have all treated him like a king and put him first. It was never easy and I just didn't think it was a strength we had at that point.
Alex and I went back to my room when Liam was going back in the incubator to sleep. We were emotional but we also tried to make a deal with God- can we just have 1 and not both? Both together seemed so damn overwhelming. It then took 12 hours for a cardiologist to visit Liam and run his tests, do an echo on him, etc. It was one of the longest days of our lives. In the meantime, I had asked Alex to call my Mom because I didn't know what else to do. I also knew I couldn't tell her myself without breaking down. She immediately left her office 4 hours away and drove to the hospital. I spent most of that time that day blaming myself, and the next week or so after wards doing the same. I am now tearing up writing this because in hindsight, I was in a dark place inside my head and heart, but I know so much more now.
The cardiologist confirmed that Liam had two heart defects, comprising of up to 6 repairs. He would need serious open heart surgery, perhaps immediately depending if he remained stable. If he was stable, it could be 6 months at the maximum. The doctors took blood and the Down results wouldn't be back for several days, perhaps up to a week.
Thankfully, since the original diagnosis, the three top pediatric heart surgeons in the country and another cardiologist confirmed it is only one major heart defect, bringing the repair total down to 3 issues. While this still means open heart surgery, it was a less difficult and tricky one as we have been reassured. More on the surgery in future posts.
Liam does have Down syndrome but to be honest, our main concern and focus is the heart surgery. There is so much advancement in raising and helping children thrive with Down syndrome it has been pushed to the back of our minds in some sense. We have already talked and met with a geneticist, who confirmed it was not because either one of us were carriers and that makes it easier for us to think of providing Liam with siblings down the road. Our main focus for the next year will be getting him through surgery and recovery.
More statistics to share that we have learned over the last 3 weeks.
We had a average risk of my maternal age of 1 out of 700 for Down syndrome.
1 out of 100 babies are born with a heart defect.
Liam officially has tetralogy of fallot, and it occurs between the 5-8th week of pregnancy when the heart develops. Like Down syndrome, it is sporadic and no links to us or genes.
Tetralogy makes up 9% of all defects, and occurs in about 2 out of every 10,000 births. It is much more common with children who have Down syndrome.
We consider ourselves lucky and thankful for this beautiful little boy. The odds have been against him since conception and he has thrived. In addition to family and their immediate support, research into surgeons, and their congratulations, because you know what, having a child is a celebration no matter the challenge God may present to you, our friends were amazing. Alex's office sent us a beautiful bouquet and teddy bear, we have friends who we called and let us cry to and talked us through those first few days of the unknown. Thank you- you know who you are. We love you all.
At 13 weeks, I did a test called nuchal transluceny. It tests for two things- chromosomal issues with the baby such as DiGeorge or Down syndrome. It also tests for any major heart conditions. We left with a 1 in 50,000 chance for Down as we were told and no heart issues detected. It is 99.5% accurate. The test was done at a specialist in the INOVA system here in Virginia. (Alex first quipped..well someone's gotta be that .5%. Oh indeed.)
From the first trimester forward, I had an ultrasound done almost every 2 weeks and then every week starting in the third trimester. I think all together, at least 20 scans. I additionally did scans at two different high risk specialists at two different hospitals, several times. Why all the scans? Because of my diabetes, the biggest concern was to make sure the baby did not get too big. Towards the end of the pregnancy, 34 weeks, Liam's cord pressure began acting up which got me sent to the specialist several times as well. From 16 weeks forward, his diagnosis would have been visible on every ultrasound. Additionally, those cord pressure issues were directly related to his diagnosis and was missed by 2 different hospitals.
So, the actual roller coaster. When the NICU doctor walked in a mere 8 hours after we had delivered Liam, we were told that his oxygen levels were back to a good place and he no longer needed to be on it. My immediate reaction was to ask if we could bring him back to our room. He shook his head no.
Then, with a half smile on this face, he said " I also wanted to let you know that your son has a strong heart murmur and it's possible it may need surgery to fix it, depending on what a cardiologist can find. Oh, and we are pretty confident he has Down syndrome."
I was holding Liam and all I could do was stare at him. He was small, 2 lbs smaller than what was seen on the last ultrasound 24 hours before we delivered, but he seemed healthy and in fact, was moving a bit and looking around already. I began to cry and couldn't stop. I was scared of both diagnosis' to be honest and it's not meant to be offensive to anyone with or raising a child with Down syndrome. I know the dedication and the lifetime commitment it takes- my uncle has Down syndrome and my grandmother and aunts have all treated him like a king and put him first. It was never easy and I just didn't think it was a strength we had at that point.
Alex and I went back to my room when Liam was going back in the incubator to sleep. We were emotional but we also tried to make a deal with God- can we just have 1 and not both? Both together seemed so damn overwhelming. It then took 12 hours for a cardiologist to visit Liam and run his tests, do an echo on him, etc. It was one of the longest days of our lives. In the meantime, I had asked Alex to call my Mom because I didn't know what else to do. I also knew I couldn't tell her myself without breaking down. She immediately left her office 4 hours away and drove to the hospital. I spent most of that time that day blaming myself, and the next week or so after wards doing the same. I am now tearing up writing this because in hindsight, I was in a dark place inside my head and heart, but I know so much more now.
The cardiologist confirmed that Liam had two heart defects, comprising of up to 6 repairs. He would need serious open heart surgery, perhaps immediately depending if he remained stable. If he was stable, it could be 6 months at the maximum. The doctors took blood and the Down results wouldn't be back for several days, perhaps up to a week.
Thankfully, since the original diagnosis, the three top pediatric heart surgeons in the country and another cardiologist confirmed it is only one major heart defect, bringing the repair total down to 3 issues. While this still means open heart surgery, it was a less difficult and tricky one as we have been reassured. More on the surgery in future posts.
Liam does have Down syndrome but to be honest, our main concern and focus is the heart surgery. There is so much advancement in raising and helping children thrive with Down syndrome it has been pushed to the back of our minds in some sense. We have already talked and met with a geneticist, who confirmed it was not because either one of us were carriers and that makes it easier for us to think of providing Liam with siblings down the road. Our main focus for the next year will be getting him through surgery and recovery.
More statistics to share that we have learned over the last 3 weeks.
We had a average risk of my maternal age of 1 out of 700 for Down syndrome.
1 out of 100 babies are born with a heart defect.
Liam officially has tetralogy of fallot, and it occurs between the 5-8th week of pregnancy when the heart develops. Like Down syndrome, it is sporadic and no links to us or genes.
Tetralogy makes up 9% of all defects, and occurs in about 2 out of every 10,000 births. It is much more common with children who have Down syndrome.
We consider ourselves lucky and thankful for this beautiful little boy. The odds have been against him since conception and he has thrived. In addition to family and their immediate support, research into surgeons, and their congratulations, because you know what, having a child is a celebration no matter the challenge God may present to you, our friends were amazing. Alex's office sent us a beautiful bouquet and teddy bear, we have friends who we called and let us cry to and talked us through those first few days of the unknown. Thank you- you know who you are. We love you all.
Wednesday, December 2, 2009
Long night ahead.
Growing up, I was never a fan of roller coasters or the unknown. Immediately after the birth of little man, we got on one of the craziest emotional roller coasters I couldn't have imagined or wished on our worst enemy. After I was done being sewn up, I was taken to a recovery area and was surprised to find myself...alone. Alex and Liam both weren't in the room and I was told that's where they would be. My nurse put some hot air blanket on me because my temperature had dropped too low and went off to look for them. It was about 1am. At 1:30 am, she came back and I was in a panic. She said Alex was with Liam over in NICU. Alex walked in shortly after and reassured me all was ok, they just needed to get his oxygen levels up. They were thought to be low because of the c-section.
We waited. And waited. Finally at 3am, after being talked to by the nurse and one of the surgeons about senseless stuff for over 30 minutes, I threw a mini fit and said take me to him. So 3 hours and 10 minutes after he was born, I was rolled in the bed over to NICU. He was hooked up to a number of monitors and had oxygen. It was both scary but exciting to see him finally. The NICU staff told us he was doing well and should be in my recovery room that morning. They placed him in my arms and I finally noticed how tiny he was. I wasn't sure how to hold him and that scared me.
We rolled away shortly after this and about 5 feet from his room, I got sick- I mean green bile and what seemed like buckets of it everywhere. I don't know if it was my nerves but I felt such relief knowing he was okay, I guess I lost it. We finally were admitted to our room and went to bed about 4am. I was wide awake again at 6am and called the NICU. I was told we had to wait until after the shift change at 7:30am to come back. At this point, I was beyond anxious so I called my Mommy. Alex had called everyone the night before but we didn't get to our room til dawn so this was the first chance I had to check in. It was great just talking about the delivery and my son, using the word son. It calmed me down a ton.
Finally, the nurse came to take us to NICU and she had me walk to the wheelchair. I felt okay and only had a little pain. When we got to his room, the oxygen was off which I took for a good sign and was hoping I could just take him with me. One of the nurses gave him to me to hold and said the doctor would be in shortly. This is where that aforementioned roller coaster ride would really begin to spin out of control, 8 hours after he was born.
With 10 minutes to spare.
William Michael Kuhns joined this world at 11:50 p.m. on 11/11/2009. And its a good thing too because those born on 11/12 just paled in comparison to Veterans Day, Gen Patton, etc. (Tonya Harding and Jeffrey Dahmer, keep your birthday).
I was admitted to the hospital on 11/1o after a high blood pressure reading at my 37 week appointment. My reaction was it should be high after being made over 2 hours to wait for the doctor to see me. Oh well, apparently no one else believed that I was just annoyed. I was given some medicine and told I would be staying overnight. Alex came after work and snuck me a piece of carrot cake from the cafeteria since I couldn't get anyone to feed me and it had been 12 hours. We watched tv, talked and said good night. He went home to let the dogs out and get a good nights sleep. Good thing..
The next day, I was still being monitored and after a bite to eat at 2pm, was told to only drink water. At 6pm, as Alex and I sat there probably on Facebook a nurse came in and confiscated my water. She said we were going to be delivering that night at 9:30. We called our families and then went into panic. Alex rushed home to get a few things- I wanted qtips, 3, specifically so I could shower and clean my ears. My love of my life came home with the package from the wholesale club. 800. They really weren't that dirty :o)
The dogs were kenneled, bags were packed and camera was charged by 8:30pm. We were wearing our scrubs and taking stupid pictures of ourselves. 9pm came and went. 9:30pm came and went. Finally at 10pm, my favorite nurse Sandi came and told us they were running a little behind. We were brought down about 10:30pm and I walked into the surgery room. I was doing fine until they had to put a new IV in me because my other one was inserted incorrectly. Note to Mom, see I told you it really hurt!
The spinal tap was actually easy but by the time I got it, I was freezing and had the shakes. The doctor said this is just how some people react to the anesthesia and I felt like I was having seizures the entire time. This was the most unpleasant part of the surgery. The doctor began to narrate how they were slicing me open and I told them to stop immediately. Alex was brought in at some point and he held my hand. He remembered my one request and began talking to me so I couldn't hear the surgery. Alex recounted all of our funny and greatest dates, wedding, honeymoon and was amazing. And then I remember someone asking Alex if he wanted to watch, he said hell yes or something to that effect and jumped up. And then the elephant sat on me. It literally felt like I was being suffocated to death and they warned me it would. Alex watched our son being delivered and hearing his amazement gave my hope it was almost over.
William Michael came into this world screaming and squealing, something that surprised us both and made me cry immediately. They told us he probably wouldn't because c-section kids don't exercise their lungs like natural births. He was brought to the bassinet which was over my left shoulder and I was watching Alex as he saw him for the first time. I heard little bits of the conversation. One nurse said red hair and I laughed. Alex took some pictures and came over to me to show them. They weighed him and he came in well under the 7lb baby we expected- just 5 lbs, 6 oz. He was 19 inches and 3/8s long, much longer than anticipated as well. After Liam was wrapped, they brought him over to me and I kissed him, told him I loved him and I would see him soon. Alex went with Liam and the pediatrician for all the official stuff as I was sewed up. I don't remember much other than one nurse holding my shoulders because I was shaking. I was offered some other drug to take the edge off but declined- I just wanted to go see my baby and remember every detail.
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