August 5, 2003, my beautiful baby boy was born after an uneventful pregnancy and delivery. When he was born, however, he didn't cry. I asked over and over, "what is wrong with my baby?" The answer repeatedly was, "nothing, he is perfect" and "we just need to get him started". They slapped his feet, they jiggled him around, they sat him up, laid him down, finally, he let out a weak cry. Then it was heartier. Hooray, he WAS perfect. They bundled him up and gave him to me.
The nurses and midwife then left the room in order for us to bond with him.
Our family came in.
When my mom saw him, the first words out of her mouth were, "he's black! Look at how dark he is" I looked at her with a weird look on my face. She went on, "look at his hands, they are so dark" I told her it was fine, all babies were born with blue hands and feet. I was seeing him through mother's eyes. I saw nothing but perfection.
While we were introducing the brothers to Zachary, unbeknownst to us, my step-dad was in the hallway demanding the nurses take him and run tests. They refused. They said he was fine. My step-dad persisted and finally the nurses took him to give him a bath.
Time went by, and they didn't bring him back to us.
After what felt like an eternity, the doctor came in to inform us that they had noticed he was blue while bathing him, did a pulse ox test, and found his SATS to be low. He was placed under an oxygen hood.
No one knew what was wrong with him. We were told things like, "he was 3 weeks early, his lungs are immature" "he's a big boy, and big boys tend to have wetter lungs" "his lungs are wet, they'll dry out". They ran test after test. All were negative. They started him on antibiotics in case a pneumonia was missed.
Finally, an echocardiogram was performed, and our world turned upside down.
The important thing is, because of the pulse ox, they knew something was wrong, and he was put on oxygen right away.
Zachary was diagnosed with a congenital heart defect called Total Anomalous Pulmonary Venous Return and an Atrial Septal Defect. A complex, life threatening heart defect. The morning after he was diagnosed, he had open heart surgery.
Then thing was, there was nothing to indicate he had a CHD. No heart murmur, nothing. Just a low pulse ox. While we waited for the cardiologist to read the echo, we asked the pediatrician if she thought it was his heart. She said no, not at all because he didn't act like a baby with a CHD.
Fast forward six years. I was pregnant with my sixth child. I had several fetal echoes and was told that her pulmonary veins could be seen and looked great. I was told over and over that her heart looked great and there was nothing to indicate anything would be wrong.
When she was born she looked so great. She was breathing so well. I remember telling her, "you're such a good baby, not even grunting, you'll avoid a NICU stay!" Later in my room, Matt was holding her, I told him to cover her up, she looked cold. I look back and realize how silly that was.
Again, they took her for a bath, and didn't bring her back. After about an hour, Matt went to the nursery to find out what was going on. The nurse said she thought that Natalie looked dusky so did a pulse ox test. She had called in the pediatrician because her SATS were low. When the pediatrician got there, we told him about Zachary. He did a blood gas test, which came out bad. An echo was then ordered and it was discovered she had the same defect as her brother.
The interesting thing is how well she did. The reason babies stay in the hospital for so long after heart surgery is often because of feeding issues. Because of this they wanted to hold out as long as they could to give Natalie the chance to really learn how to eat in hopes that she wouldn't forget when she was able to eat again. She was hooked up to monitors and Matt and I commented on the fact that watching the monitors was like watching someone die.
She looked sooo good. And yet we watched and one day her respiration rate went up. The next her O2 SATS went down more. And still she looked good. She didn't look like a thing was wrong with her. Finally at six days old, because the monitors said so, the doctors said she needed her surgery that day. Still, nothing looked wrong.
TAPVR is so often missed at birth. The babies look fine. Unfortunately, many TAPVR babies pass away without being diagnosed.
I will never forget the nurse who decided to test Natalie. In my opinion, she is a huge reason my daughter is here today.
So, what is pulse oximetry testing and what's the big deal?
We've all seen a pulse ox test. It is the little red light they put on your finger when checking your vitals. They are measuring the amount of oxygen in your blood.
To do this test in a newborn, costs less than the cost of a bandaid. Hospitals crank the prices up and insurance doesn't have to pay for it.
New Jersey has now made pulse ox testing mandatory on newborns 24 hours old. This means insurance will have to cover this non invasive test. It doesn't mean that a parent can't deny it, though I'm not sure why they would.
In recent studies they have learned that about a third of one percent of babies tested at 24 hours old had false positive results.
A pulse ox test won't catch every CHD, but it will catch many.
I have been reading study after study to put in here, but I'll let you google it. Just google Pulse Ox screening newborn and you will find that 1 in 15,000 babies will be born with a critical CHD and half of those will die before a diagnosis is made.
People think that a CHD can be caught by listening to the heart. This is so wrong. My kids didn't present with a heart murmur. Many don't.
We screen our babies for things like hearing loss and PKU without giving it a second thought. It's just routine. The false positives from those tests are so much higher. Hearing tests cost much more than a pulse ox and while hearing loss is devastating, it isn't life threatening.
It is so important that we make this test mandatory. Insurance companies need to pay for this, and hospitals need to not jack up the price.
Babies die from detected CHDs, but how tragic that any baby should die from an undetected CHD, especially when a simple test could pick up a problem. No parent should have to experience this.
So, what can you do?
Write a letter to your state representative. Tell them how important this is.
Sign the petition that I've linked to on the side bar.
And most importantly, if you are pregnant, or ever get pregnant, please demand a pulse ox test on your baby at 24 hours of age.
Yes, this is long. But it's personal to me. Not a single day goes by that I don't thank God that my babies are still here. I know how easily it could be different. TAPVR is one of the top 5 defects that isn't detected at birth. I am just so, so thankful that people had the sense to perform a pulse ox on them.
Showing posts with label TAPVR. Show all posts
Showing posts with label TAPVR. Show all posts
Sunday, June 12, 2011
Monday, April 11, 2011
Well shoot, I don't think I'm too helpful!
I was just looking at my referrals and the phrases searched most to get to my blog.
The top three searches are, TAPVR, TAPVR girl, and TAPVR mom. Strangely, the next is TAPVR Natalie Grace. I have no idea if there is another Natalie Grace out there with TAPVR, or if someone we know uses that phrase every time they come here.
It's odd though, because I searched those phrases, and went through several pages of TAPVR, and TAPVR girl and didn't come across my blog. TAPVR mom brought me up on the second page, I think.
But here's the thing...I don't think I'm that helpful to someone searching for TAPVR. When you are searching TAPVR, you are wanting information. Where's mine? UGH! Maybe I need to link to some of my pages for that desperate TAPVR searcher. But what? Have I ever said something that made you say, "ahh, yes, now I get it" or, "thank goodness I read that, now I have hope!"
I don't think so. I think it's because, I don't know..I was going to say I don't talk about it that much, but maybe I do.
If you were desperate to find TAPVR info, what would you be looking for at my blog? Has anything I've written ever stood out to you?
The whole purpose of me blogging about CHD is to help others have hope, but I really don't think I've ever done that.
Enlighten me! Tell me what to post!
Wow...spellcheck hates TAPVR and CHD...funny..so do I!!!
The top three searches are, TAPVR, TAPVR girl, and TAPVR mom. Strangely, the next is TAPVR Natalie Grace. I have no idea if there is another Natalie Grace out there with TAPVR, or if someone we know uses that phrase every time they come here.
It's odd though, because I searched those phrases, and went through several pages of TAPVR, and TAPVR girl and didn't come across my blog. TAPVR mom brought me up on the second page, I think.
But here's the thing...I don't think I'm that helpful to someone searching for TAPVR. When you are searching TAPVR, you are wanting information. Where's mine? UGH! Maybe I need to link to some of my pages for that desperate TAPVR searcher. But what? Have I ever said something that made you say, "ahh, yes, now I get it" or, "thank goodness I read that, now I have hope!"
I don't think so. I think it's because, I don't know..I was going to say I don't talk about it that much, but maybe I do.
If you were desperate to find TAPVR info, what would you be looking for at my blog? Has anything I've written ever stood out to you?
The whole purpose of me blogging about CHD is to help others have hope, but I really don't think I've ever done that.
Enlighten me! Tell me what to post!
Wow...spellcheck hates TAPVR and CHD...funny..so do I!!!
Tuesday, April 5, 2011
A Rare Breed
I'm writing this for no particular reason. Nothing has happened, all is well. It's just something that I often have thought, and figure I'll write out so others can understand.
There are 35 (I think) known CHDs...ranging from simple to complex.
TAPVR is considered a complex CHD. However, if everything goes well, once repaired, TAPVR shouldn't cause any problems later in life. Now, TAPVR does present in several different ways, and can be very, very complex..then it does cause issues later in life.
However, for what I'm talking about is my kids.
Technically, they should be fine from here on out. Yes, Zachy has a pacemaker, but he should be fine.
Most TAPVR kids have the same prognosis.
And yet, I don't know a single TAPVR mom who doesn't worry every time their child goes to the doctor. Or wonder if their lips look blue, or if it's just the lighting. I don't know any TAPVR moms who don't wonder, with every cold, what horrible thing could happen.
Again, technically, we shouldn't have to worry about any of this. But, we are moms, and dads, and we have watched our children fight for their lives, and we will never forget that. And it scars us, as much as it does them...if not more. Always, it is in the back of our mind, no matter how logical that may seem. It's just par for the course, being a TAPVR parent.
However, I feel like it sets us apart in the CHD world. We don't have to deal with multiple open heart surgeries (again if all goes well..TAPVR kids sometimes DO need multiple open heart surgeries), and we don't have to wonder every day, if today will be the last day we have with our child.
I feel like it kind of makes it hard to fit in, in this CHD world.
I have been in actual support groups, where the moms of the HLHSers (a VERY serious defect, where the child is essentially born with half a heart) in a sense feel better than us...like they have it so much harder, so they deserve to be part of the group more. They deserve to have the heart walk teams, because they deal with so much more.
And they do deal with more! And I am SO thankful that we got TAPVR instead of HLHS.
However, it doesn't make our TAPVR road any less real. It doesn't mean we don't deal with feelings that are so real.
We hurt at seeing our babies hurt just as much as they do.
I see it all over the CHD community. I don't understand it.
I love my new support group here, I haven't felt this with them.
The thing is, we are all fighting for the same thing. We are all on the journey together. It shouldn't matter who has it worse off, because really, if you look hard enough you can always find someone worse off than you!
I think doctors often don't realize it either. We are often discharged from the hospital and just sort of left. No one ever reaches out to be sure the parents are ok. No one suggests support groups. No one tells us that it's ok that the feelings never go away.
Anyway, I'm rambling, and I really have no idea why I'm even sharing this. Us TAPVR parents know who we are, we have our own support groups for other TAPVR parents who understand where we are, we are ok.
It's just been on my mind lately.
There are 35 (I think) known CHDs...ranging from simple to complex.
TAPVR is considered a complex CHD. However, if everything goes well, once repaired, TAPVR shouldn't cause any problems later in life. Now, TAPVR does present in several different ways, and can be very, very complex..then it does cause issues later in life.
However, for what I'm talking about is my kids.
Technically, they should be fine from here on out. Yes, Zachy has a pacemaker, but he should be fine.
Most TAPVR kids have the same prognosis.
And yet, I don't know a single TAPVR mom who doesn't worry every time their child goes to the doctor. Or wonder if their lips look blue, or if it's just the lighting. I don't know any TAPVR moms who don't wonder, with every cold, what horrible thing could happen.
Again, technically, we shouldn't have to worry about any of this. But, we are moms, and dads, and we have watched our children fight for their lives, and we will never forget that. And it scars us, as much as it does them...if not more. Always, it is in the back of our mind, no matter how logical that may seem. It's just par for the course, being a TAPVR parent.
However, I feel like it sets us apart in the CHD world. We don't have to deal with multiple open heart surgeries (again if all goes well..TAPVR kids sometimes DO need multiple open heart surgeries), and we don't have to wonder every day, if today will be the last day we have with our child.
I feel like it kind of makes it hard to fit in, in this CHD world.
I have been in actual support groups, where the moms of the HLHSers (a VERY serious defect, where the child is essentially born with half a heart) in a sense feel better than us...like they have it so much harder, so they deserve to be part of the group more. They deserve to have the heart walk teams, because they deal with so much more.
And they do deal with more! And I am SO thankful that we got TAPVR instead of HLHS.
However, it doesn't make our TAPVR road any less real. It doesn't mean we don't deal with feelings that are so real.
We hurt at seeing our babies hurt just as much as they do.
I see it all over the CHD community. I don't understand it.
I love my new support group here, I haven't felt this with them.
The thing is, we are all fighting for the same thing. We are all on the journey together. It shouldn't matter who has it worse off, because really, if you look hard enough you can always find someone worse off than you!
I think doctors often don't realize it either. We are often discharged from the hospital and just sort of left. No one ever reaches out to be sure the parents are ok. No one suggests support groups. No one tells us that it's ok that the feelings never go away.
Anyway, I'm rambling, and I really have no idea why I'm even sharing this. Us TAPVR parents know who we are, we have our own support groups for other TAPVR parents who understand where we are, we are ok.
It's just been on my mind lately.
Tuesday, March 1, 2011
Our Decision
I've been asked about our decision to have another baby after having a heart baby.
I figured I'd write about it here.
I am aware that our decision is not the popular one, but that's ok.
To understand our decision, you sort of have to know some details.
After we had Zachy, we had no idea what we were going to do. We had always wanted lots of kids and hadn't made a decision about whether or not we would have more. We kind of assumed we would but had never said yes or no, for sure.
After awhile, I had my usual baby fever. I couldn't imagine not having another baby. Matt was pretty scared about ever having a heart baby again, but I was pretty confident that we wouldn't have to worry about that. After all, the chances of having another heart baby only raises to 3% after having one heart baby.
We finally had decided to just let go and let God.
Shortly after that, we were surprised to find out we were pregnant with Emily.
I won't lie, that pregnancy with her was super stressful.
Because of Zachy, I was given monthly level II ultrasounds and a few fetal echoes. I chose my doctor based on where she delivered. Everything I did was centered around having another heart baby.
Thankfully, it was all for nothing. Emily was born perfectly healthy. We were so thrilled and were reassured that the TAPVR that affected Zachy truly was just a fluke occurrence.
After that we were open to however many kids God wished to bless us with.
When Emily was 2, we learned we were pregnant again. I now had the doctor and my pregnancy went along like Emily's. Including the level II ultra sounds and fetal echoes.
We were in such shock when we learned she also had TAPVR. My pregnancy was pretty stress free because we didn't know, and we assumed it wouldn't happen again. I'm grateful for that.
We have now been told our chances of another CHD baby are pretty high. What to do.
We have talked and talked and prayed and prayed about this. The only decision that brings us peace is to continue to allow God to bless us with however many children he chooses.
I know so many people think we are crazy. And that's OK. When you are in constant turmoil over what to do, and when you both agree that the only decision that brings peace is to go on, you have to go with it.
Are we nervous that we will, at some point, have another heart baby? Absolutely. It terrifies me. However, missing out on a blessing terrifies me more.
We have been blessed in the fact that our children are OK and alive. We know how easily this could not be the case. And how it could turn out bad for future children. We have faith, however, that whatever happens, God is in control. He chooses when we live and die. His plans are certainly not always ours, but we have to have faith that they are best. Someday, all our questions will be answered.
Again, I realize that our choice is not the popular one. In fact, there are very few people I can think of who would choose to have more after what we've been through. It's OK though, because we are confident in our choice.
We won't ever consciously try for another baby, but we won't do anything, other than nursing, to prevent a pregnancy.
I hope this answers some questions people may have. I know that I always wanted to hear other's opinions when we were in the midst of choosing what to do. :)
I figured I'd write about it here.
I am aware that our decision is not the popular one, but that's ok.
To understand our decision, you sort of have to know some details.
After we had Zachy, we had no idea what we were going to do. We had always wanted lots of kids and hadn't made a decision about whether or not we would have more. We kind of assumed we would but had never said yes or no, for sure.
After awhile, I had my usual baby fever. I couldn't imagine not having another baby. Matt was pretty scared about ever having a heart baby again, but I was pretty confident that we wouldn't have to worry about that. After all, the chances of having another heart baby only raises to 3% after having one heart baby.
We finally had decided to just let go and let God.
Shortly after that, we were surprised to find out we were pregnant with Emily.
I won't lie, that pregnancy with her was super stressful.
Because of Zachy, I was given monthly level II ultrasounds and a few fetal echoes. I chose my doctor based on where she delivered. Everything I did was centered around having another heart baby.
Thankfully, it was all for nothing. Emily was born perfectly healthy. We were so thrilled and were reassured that the TAPVR that affected Zachy truly was just a fluke occurrence.
After that we were open to however many kids God wished to bless us with.
When Emily was 2, we learned we were pregnant again. I now had the doctor and my pregnancy went along like Emily's. Including the level II ultra sounds and fetal echoes.
We were in such shock when we learned she also had TAPVR. My pregnancy was pretty stress free because we didn't know, and we assumed it wouldn't happen again. I'm grateful for that.
We have now been told our chances of another CHD baby are pretty high. What to do.
We have talked and talked and prayed and prayed about this. The only decision that brings us peace is to continue to allow God to bless us with however many children he chooses.
I know so many people think we are crazy. And that's OK. When you are in constant turmoil over what to do, and when you both agree that the only decision that brings peace is to go on, you have to go with it.
Are we nervous that we will, at some point, have another heart baby? Absolutely. It terrifies me. However, missing out on a blessing terrifies me more.
We have been blessed in the fact that our children are OK and alive. We know how easily this could not be the case. And how it could turn out bad for future children. We have faith, however, that whatever happens, God is in control. He chooses when we live and die. His plans are certainly not always ours, but we have to have faith that they are best. Someday, all our questions will be answered.
Again, I realize that our choice is not the popular one. In fact, there are very few people I can think of who would choose to have more after what we've been through. It's OK though, because we are confident in our choice.
We won't ever consciously try for another baby, but we won't do anything, other than nursing, to prevent a pregnancy.
I hope this answers some questions people may have. I know that I always wanted to hear other's opinions when we were in the midst of choosing what to do. :)
Sunday, August 8, 2010
Seven Years Ago
~This ended up being far lengthier than I intended. I understand if you don't read it all. I needed to write this out, for me.
Today is the seventh anniversary of Zachy's heart being fixed.
It was on this day, seven years ago, that we were thrust into the world of open heart surgery.
I remember most of that day, as if it were yesterday. A few things are hazy, but for the most part, it's etched in my mind.
I've never written about this, and decided it was time. Some images may be disturbing to some people, but he's my baby, and he is beautiful.
August 5, 2003, I was induced. Our fourth baby was coming. Our fourth boy. What a joyous occasion! Labor was fast and very painful. I had decided to go with no epidural, and he was sunny side up. When it came time to push, it hurt so bad, I couldn't stop pushing. He was born in four short minutes, and his face would later show the evidence of this. I was told that he didn't actually come face up, but that he came face first, so his nose came out first..no molding of his head, no wonder it hurt so bad.
When he was born, they plopped him on my belly. He was lifeless. I couldn't look at him. All I could do was ask, over and over, "what's wrong with my baby?" The midwife insisted that he was fine, perfect even. After what felt like an eternity (in reality, it was one minute) he let out a cry. A puny, little cry. They whisked him off to be cleaned up and weighed.
We were then allowed to hold him, and the kids and grandparents came in to meet the newest edition to the family.
What I saw, and what others saw, were drastically different. I saw a perfect beautiful baby. The first words out of my mom's mouth were, "he's black". I was so irritated by that comment. Little did I know that my step dad had turned around and left the room. Unbeknownst to me, an argument between him and the nurses was taking place in the hallway outside. He was insisting that they call the doctor, now. They were telling him they knew how to do their jobs and that he was fine, no need for the pediatrician to come. They told him she would be there when she did her rounds. He wouldn't stand for it. After much insistence, they finally called the pediatrician.
When she got there, they took him away, assuring us that they would bring him right back, after they examined him and bathed him.
The next thing we knew, the doctor was talking to us, telling us that his oxygen levels were low and he was on oxygen. They told us he was probably just born too fast and his lungs were still wet. They'd wean him off the oxygen over time.
This was not to be, and before we knew it, we were being blown a terrible blow.
Our baby had a heart defect, and would be transferring to a different hospital.
I was in such shock and so naive, that I asked them how we would get him to the hospital an hour away in our car, with oxygen. They informed me that the helicopter was on it's way. That's when it hit me that this was serious. Much more serious than I wanted to admit.
This all took place August 7. By the time we got to the other hospital, they had him settled in his room in the PICU, and we were greeted by many doctors. They took us in a room to explain to us that Zachary's pulmonary veins hadn't connected right, and that the only option was open heart surgery. They told us that TAPVR occurs in 1 in 15,000 babies. They also told us that he had a 95% chance of survival.
Most people would be thrilled with those odds, but we had just hit something that had a .0015% chance of happening..so 5% seemed huge.
That night, they wanted to put a line in his belly button. They told us it would take about a half an hour. Three hours went by, and when we saw him again, he was intubated. We weren't expecting to see him on a vent. That was hard. Really, really hard.
August 8 came. Surgery day. I will never forget riding in the elevator with him, and kissing him goodbye in the hallway. What a horrible thing. I was trying not to break down and cry, but all I could think about was that this could be the last time I saw my baby alive.
The surgery was to take six hours.
I remember the waiting room so clearly. I remember it being filled with people. My mom and step dad were there, and Matt's parents. Some people from some one's church came to sit. I have no idea who they were, and kept thinking I didn't have it in me to be sociable with people I didn't know. I purposely kept my distance from them. They could pray with my in laws, but I needed them to leave me alone.
Being in the waiting room, was somewhat like being in a fish tank...everything around me was hazy. All the sounds were muffled. And yet, it was all so clear.
At some point, my step dad asked me what I was scared about. I said I was afraid of him dying. He informed me that if he did, we would get through, and to not be scared. I didn't believe him and thought it was a horrible thing to say. I know now, he was just trying to help.
There was a time that I went to the PICU to pump. I rode in the elevator, carrying my "personal belongings" bag that held my pump pieces. There was a lady on the elevator who looked at me excitedly and said, "are you here for the reason I think you're here???" I don't know how I didn't cry. I just quietly told her no. When I got to the PICU the cardiologist expressed his concern about me. He told me I had to sleep, I had to take care of me, or I would end up being readmitted to the hospital. I hadn't left Zachy's side. People wanted me to leave the hospital, but home was 2 hours away. They talked about the Ronald McDonald House. I insisted I had to stay at the hospital to be able to pump. My mind was so set on him not getting formula, only breast milk, when the time came. It was the only thing I felt like I could control. The hospital ended up giving us a cot, and I slept on the cot in the family waiting room in the PICU, and Matt slept on the couch. Some nights, he went home, but I never left. As a side note, I wasn't able to do this with Natalie, and going home without a baby every night was so incredibly difficult.
When I returned from pumping, an elderly lady met me in the hall. She asked me if I had a baby having heart surgery. I told her yes, and she proceeded to tell me that her husband was supposed to have had the first surgery of the morning, but he was pushed back for a very sick little baby. She told us she was thinking of us, and wished us the best.
Somehow, everyone in the waiting room must have known we had a baby in surgery. They all stared, often.
After only four and a half hours, the cardiologist came into the waiting room. A hush fell on the room. You could almost see everyone leaning towards us as the cardiologist spoke to us.
Zachy was out of surgery. And he was doing great.
We were finally reunited with our baby. Mother's eyes are amazing, because when we saw him, I never focused on all the tubes coming out of him. I saw past it all, to my precious baby. People always commented on how many IVs and wires and tubes he had, but I just didn't see it.
The one thing I have no recollection of from that day, is where my other kids were. I'm thinking maybe with Matt's grandparents. I have pictures of my mom holding Collin over Zachy, saying goodbye. At some point, they were there. Did they stay the whole time? I really don't think so. But in all honesty, I don't know. Neither does Matt.
The following days would be a blur. I never left, for fear that something would go wrong, and I wouldn't be there. Matt had to go to work, we were so poor at the time, there was no paid time off. I would miss him fiercely on those days.
One week later, we got to bring our baby home. He had no complications while in the hospital.
He not only survived, but thrived.
By the time he was four, he had developed sick sinus syndrome, and would need a pacemaker. His future holds surgeries for the rest of his life. But that's a different story, for another time.
We know what we have. We know what a gift we were given, and how precious life is. There is not a single day that the thought doesn't go through my head of what could have so easily been. I thank God every day for blessing us with this amazing boy, and all our kids for that matter. We truly are blessed.
Please excuse the quality of the phots, they are either scans of pictures, or pictures of pictures. No digital camera back then!
Being weighed, after birth. Notice, no crying. He really never cried very much.
This was right after he was born..well after they got him to cry.
His poor face was so swollen from being delivered so quickly. He couldn't even open his eyes, and his face was completely purple from the bruising.
Getting ready to go for a ride in the helicopter.
This is what we were greeted with after they told us they wanted to put a line in his belly button. He ended up intubated.
The morning of surgery. In all of these pictures, we are smiling. I think we were at a place of trying so hard not to break down, so we laughed instead.
Right after surgery. I was certain he would end up bald, because for days all I could touch was his head. I would just sit and rub his head, I will never forget the feel of that baby fuzz.
Another pic from right after surgery.
On his birthday...surviving..and THRIVING!! Love you, Zachy!
Today is the seventh anniversary of Zachy's heart being fixed.
It was on this day, seven years ago, that we were thrust into the world of open heart surgery.
I remember most of that day, as if it were yesterday. A few things are hazy, but for the most part, it's etched in my mind.
I've never written about this, and decided it was time. Some images may be disturbing to some people, but he's my baby, and he is beautiful.
August 5, 2003, I was induced. Our fourth baby was coming. Our fourth boy. What a joyous occasion! Labor was fast and very painful. I had decided to go with no epidural, and he was sunny side up. When it came time to push, it hurt so bad, I couldn't stop pushing. He was born in four short minutes, and his face would later show the evidence of this. I was told that he didn't actually come face up, but that he came face first, so his nose came out first..no molding of his head, no wonder it hurt so bad.
When he was born, they plopped him on my belly. He was lifeless. I couldn't look at him. All I could do was ask, over and over, "what's wrong with my baby?" The midwife insisted that he was fine, perfect even. After what felt like an eternity (in reality, it was one minute) he let out a cry. A puny, little cry. They whisked him off to be cleaned up and weighed.
We were then allowed to hold him, and the kids and grandparents came in to meet the newest edition to the family.
What I saw, and what others saw, were drastically different. I saw a perfect beautiful baby. The first words out of my mom's mouth were, "he's black". I was so irritated by that comment. Little did I know that my step dad had turned around and left the room. Unbeknownst to me, an argument between him and the nurses was taking place in the hallway outside. He was insisting that they call the doctor, now. They were telling him they knew how to do their jobs and that he was fine, no need for the pediatrician to come. They told him she would be there when she did her rounds. He wouldn't stand for it. After much insistence, they finally called the pediatrician.
When she got there, they took him away, assuring us that they would bring him right back, after they examined him and bathed him.
The next thing we knew, the doctor was talking to us, telling us that his oxygen levels were low and he was on oxygen. They told us he was probably just born too fast and his lungs were still wet. They'd wean him off the oxygen over time.
This was not to be, and before we knew it, we were being blown a terrible blow.
Our baby had a heart defect, and would be transferring to a different hospital.
I was in such shock and so naive, that I asked them how we would get him to the hospital an hour away in our car, with oxygen. They informed me that the helicopter was on it's way. That's when it hit me that this was serious. Much more serious than I wanted to admit.
This all took place August 7. By the time we got to the other hospital, they had him settled in his room in the PICU, and we were greeted by many doctors. They took us in a room to explain to us that Zachary's pulmonary veins hadn't connected right, and that the only option was open heart surgery. They told us that TAPVR occurs in 1 in 15,000 babies. They also told us that he had a 95% chance of survival.
Most people would be thrilled with those odds, but we had just hit something that had a .0015% chance of happening..so 5% seemed huge.
That night, they wanted to put a line in his belly button. They told us it would take about a half an hour. Three hours went by, and when we saw him again, he was intubated. We weren't expecting to see him on a vent. That was hard. Really, really hard.
August 8 came. Surgery day. I will never forget riding in the elevator with him, and kissing him goodbye in the hallway. What a horrible thing. I was trying not to break down and cry, but all I could think about was that this could be the last time I saw my baby alive.
The surgery was to take six hours.
I remember the waiting room so clearly. I remember it being filled with people. My mom and step dad were there, and Matt's parents. Some people from some one's church came to sit. I have no idea who they were, and kept thinking I didn't have it in me to be sociable with people I didn't know. I purposely kept my distance from them. They could pray with my in laws, but I needed them to leave me alone.
Being in the waiting room, was somewhat like being in a fish tank...everything around me was hazy. All the sounds were muffled. And yet, it was all so clear.
At some point, my step dad asked me what I was scared about. I said I was afraid of him dying. He informed me that if he did, we would get through, and to not be scared. I didn't believe him and thought it was a horrible thing to say. I know now, he was just trying to help.
There was a time that I went to the PICU to pump. I rode in the elevator, carrying my "personal belongings" bag that held my pump pieces. There was a lady on the elevator who looked at me excitedly and said, "are you here for the reason I think you're here???" I don't know how I didn't cry. I just quietly told her no. When I got to the PICU the cardiologist expressed his concern about me. He told me I had to sleep, I had to take care of me, or I would end up being readmitted to the hospital. I hadn't left Zachy's side. People wanted me to leave the hospital, but home was 2 hours away. They talked about the Ronald McDonald House. I insisted I had to stay at the hospital to be able to pump. My mind was so set on him not getting formula, only breast milk, when the time came. It was the only thing I felt like I could control. The hospital ended up giving us a cot, and I slept on the cot in the family waiting room in the PICU, and Matt slept on the couch. Some nights, he went home, but I never left. As a side note, I wasn't able to do this with Natalie, and going home without a baby every night was so incredibly difficult.
When I returned from pumping, an elderly lady met me in the hall. She asked me if I had a baby having heart surgery. I told her yes, and she proceeded to tell me that her husband was supposed to have had the first surgery of the morning, but he was pushed back for a very sick little baby. She told us she was thinking of us, and wished us the best.
Somehow, everyone in the waiting room must have known we had a baby in surgery. They all stared, often.
After only four and a half hours, the cardiologist came into the waiting room. A hush fell on the room. You could almost see everyone leaning towards us as the cardiologist spoke to us.
Zachy was out of surgery. And he was doing great.
We were finally reunited with our baby. Mother's eyes are amazing, because when we saw him, I never focused on all the tubes coming out of him. I saw past it all, to my precious baby. People always commented on how many IVs and wires and tubes he had, but I just didn't see it.
The one thing I have no recollection of from that day, is where my other kids were. I'm thinking maybe with Matt's grandparents. I have pictures of my mom holding Collin over Zachy, saying goodbye. At some point, they were there. Did they stay the whole time? I really don't think so. But in all honesty, I don't know. Neither does Matt.
The following days would be a blur. I never left, for fear that something would go wrong, and I wouldn't be there. Matt had to go to work, we were so poor at the time, there was no paid time off. I would miss him fiercely on those days.
One week later, we got to bring our baby home. He had no complications while in the hospital.
He not only survived, but thrived.
By the time he was four, he had developed sick sinus syndrome, and would need a pacemaker. His future holds surgeries for the rest of his life. But that's a different story, for another time.
We know what we have. We know what a gift we were given, and how precious life is. There is not a single day that the thought doesn't go through my head of what could have so easily been. I thank God every day for blessing us with this amazing boy, and all our kids for that matter. We truly are blessed.
Please excuse the quality of the phots, they are either scans of pictures, or pictures of pictures. No digital camera back then!
Being weighed, after birth. Notice, no crying. He really never cried very much.
This was right after he was born..well after they got him to cry.
His poor face was so swollen from being delivered so quickly. He couldn't even open his eyes, and his face was completely purple from the bruising.
Getting ready to go for a ride in the helicopter.
This is what we were greeted with after they told us they wanted to put a line in his belly button. He ended up intubated.
The morning of surgery. In all of these pictures, we are smiling. I think we were at a place of trying so hard not to break down, so we laughed instead.
Right after surgery. I was certain he would end up bald, because for days all I could touch was his head. I would just sit and rub his head, I will never forget the feel of that baby fuzz.
Another pic from right after surgery.
On his birthday...surviving..and THRIVING!! Love you, Zachy!
Wednesday, July 28, 2010
Diagnoses
The other day, I once again, felt that kick in the gut.
In the military, there is a program called the exceptional family member program, or the EFMP. The purpose of the program is to make sure that the base you are stationed at has sufficient medical facilities, or educational programs, for every member of your family.
So, for example, Zachy and Natalie are enrolled in the program. When we go to move, a red flag will go up in Matt's file saying we have special needs. The base we go to will have to be able to accommodate their needs, or we can't go to that base.
Since we are getting ready to move (PCS, permanently change stations), we have to update all their EFMP paperwork.
The paperwork requires letters from their doctor, stating what exactly, they need. Since we are PCSing, the doctor also gave us a copy of their records.
Since I always feel the need to read every report I'm ever given, I decided to read this one too.
I read through Zachy's. His diagnoses were, TAPVR, Sick Sinus Syndrome, and pacemaker present. Yep, all pretty straight forward.
I then went to Natalie's. Her diagnoses read TAPVR, and Pulmonary Vein Stenosis.
It also goes on to state that there is a chance, although slight, that she will need another surgery to correct the stenosis.
So here's where I felt the kick in the gut....we have always said, in passing, that one of her veins might be slightly narrow, but I never thought it was something that would be a diagnosis. I never really thought she would need another surgery. And, she probably won't. But the fact that it was written in her records, it just makes it that much more real.
I'm sure her nurse from the NICU, Jeremy, would be telling me she is doing everything that is expected. He was always good at telling me that. Still, even if it is to be expected, I just never expected to see it in print.
Stenosis is not something we ever dealt with with Zachy. And we know it is the main complication of TAPVR after repair. It's just not supposed to happen to us. She is supposed to have one diagnosis..not two diagnoses.
I know everything will be just fine, it was just another one of those times that took my breath right out of me.
In the military, there is a program called the exceptional family member program, or the EFMP. The purpose of the program is to make sure that the base you are stationed at has sufficient medical facilities, or educational programs, for every member of your family.
So, for example, Zachy and Natalie are enrolled in the program. When we go to move, a red flag will go up in Matt's file saying we have special needs. The base we go to will have to be able to accommodate their needs, or we can't go to that base.
Since we are getting ready to move (PCS, permanently change stations), we have to update all their EFMP paperwork.
The paperwork requires letters from their doctor, stating what exactly, they need. Since we are PCSing, the doctor also gave us a copy of their records.
Since I always feel the need to read every report I'm ever given, I decided to read this one too.
I read through Zachy's. His diagnoses were, TAPVR, Sick Sinus Syndrome, and pacemaker present. Yep, all pretty straight forward.
I then went to Natalie's. Her diagnoses read TAPVR, and Pulmonary Vein Stenosis.
It also goes on to state that there is a chance, although slight, that she will need another surgery to correct the stenosis.
So here's where I felt the kick in the gut....we have always said, in passing, that one of her veins might be slightly narrow, but I never thought it was something that would be a diagnosis. I never really thought she would need another surgery. And, she probably won't. But the fact that it was written in her records, it just makes it that much more real.
I'm sure her nurse from the NICU, Jeremy, would be telling me she is doing everything that is expected. He was always good at telling me that. Still, even if it is to be expected, I just never expected to see it in print.
Stenosis is not something we ever dealt with with Zachy. And we know it is the main complication of TAPVR after repair. It's just not supposed to happen to us. She is supposed to have one diagnosis..not two diagnoses.
I know everything will be just fine, it was just another one of those times that took my breath right out of me.
Friday, July 16, 2010
I really need to stop ranting!
I know I've been a bit ranty lately, but please, allow me to rant one more time.
If you are a member of facebook, you have undoubtedly heard of the Chase Community Giving. If not, here's a rundown. Every person on FB has 20 votes they can use to vote for their favorite charities. Now, you can't use all 20 one one charity, you have to spread them out.
The top two hundred charities split a huge amount of money. I can't remember exactly how much it is, but it is enough per charity to make a difference.
So, the voting ended, and you could check out the winners.
What I saw really made me so mad.
Charity after charity related to animals. ANIMALS!!
Now, don't get me wrong, I like animals as much as the next person, but COME ON!!
You know what I didn't see?
I didn't see Saving Little Hearts, or any other CHD charity. I'm sure if any others signed up, but I know that SLH came in like 234 or something.
People...CHDs are REAL. They aren't something that is minor. They are major.
There were pediatric charities that won, which is wonderful. But CHDs will kill more children in one year than all childhood cancers combined.
Does anyone know that? Nope.
Why?
The awareness isn't out there. I cannot understand that. I'm sure it's hard for me because CHD is everywhere I look. I have many CHD friends, and it almost seems like the norm.
But here's a problem. Everyone knows about childhood cancer, it's visible. Everyone has seen the heart wrenching pictures of the child with no hair. Everyone has seen the St. Jude commercials. It's out there.
No one knows about CHD because, unless you see the children with their shirts off, you don't see it. There are no heart wrenching stories on TV. We have celebrities that do nothing, Shaun White, Brett Michaels, a Backstreet Boy, and I'm sure the list goes on. Why aren't they saying anything? They have the perfect platform to spread awareness. It makes me so upset to think about it. Because I'm just a person, I don't have the platform, but they are out there.
Then there was Boston Med. Those of us in the heart community were so excited. Finally, reality was going to be shown. And then. It wasn't. It was totally sugar coated. The baby was born with HLHS, which is serious. Many babies die from HLHS. But in the show, they just showed the baby going home like all would be fine.
And that's how many people think of CHD. That it gets fixed and everything is fine.
Only it's not.
These kids have to live with this for the rest of their lives. It is never fixed.
Yes, they can lead normal lives, sometime, but it will never be normal like a heart healthy child.
And the parents are never fine either. There is always worry in the back of our minds. When anything goes somewhat askew, we wonder. We wonder 'what if something is happening?' It never, EVER goes away.
And yet, we vote for animals. Animals.
And so, to show you the heart wrenching, I'm sharing what CHD is. The heart wrenching part of it.
It is this.
Natalie
Zachary
And it is funerals for babies or children who passed away far too young.
It isn't pretty. But it is very real.
There is hope, though. Back when Zachy was born, we were hard pressed to find anything regarding TAPVR on the Internet. Not so much, anymore. And through networking sites like Facebook, we are able to connect with so many more people, and spread the word.
CHD is real.
If you are a member of facebook, you have undoubtedly heard of the Chase Community Giving. If not, here's a rundown. Every person on FB has 20 votes they can use to vote for their favorite charities. Now, you can't use all 20 one one charity, you have to spread them out.
The top two hundred charities split a huge amount of money. I can't remember exactly how much it is, but it is enough per charity to make a difference.
So, the voting ended, and you could check out the winners.
What I saw really made me so mad.
Charity after charity related to animals. ANIMALS!!
Now, don't get me wrong, I like animals as much as the next person, but COME ON!!
You know what I didn't see?
I didn't see Saving Little Hearts, or any other CHD charity. I'm sure if any others signed up, but I know that SLH came in like 234 or something.
People...CHDs are REAL. They aren't something that is minor. They are major.
There were pediatric charities that won, which is wonderful. But CHDs will kill more children in one year than all childhood cancers combined.
Does anyone know that? Nope.
Why?
The awareness isn't out there. I cannot understand that. I'm sure it's hard for me because CHD is everywhere I look. I have many CHD friends, and it almost seems like the norm.
But here's a problem. Everyone knows about childhood cancer, it's visible. Everyone has seen the heart wrenching pictures of the child with no hair. Everyone has seen the St. Jude commercials. It's out there.
No one knows about CHD because, unless you see the children with their shirts off, you don't see it. There are no heart wrenching stories on TV. We have celebrities that do nothing, Shaun White, Brett Michaels, a Backstreet Boy, and I'm sure the list goes on. Why aren't they saying anything? They have the perfect platform to spread awareness. It makes me so upset to think about it. Because I'm just a person, I don't have the platform, but they are out there.
Then there was Boston Med. Those of us in the heart community were so excited. Finally, reality was going to be shown. And then. It wasn't. It was totally sugar coated. The baby was born with HLHS, which is serious. Many babies die from HLHS. But in the show, they just showed the baby going home like all would be fine.
And that's how many people think of CHD. That it gets fixed and everything is fine.
Only it's not.
These kids have to live with this for the rest of their lives. It is never fixed.
Yes, they can lead normal lives, sometime, but it will never be normal like a heart healthy child.
And the parents are never fine either. There is always worry in the back of our minds. When anything goes somewhat askew, we wonder. We wonder 'what if something is happening?' It never, EVER goes away.
And yet, we vote for animals. Animals.
And so, to show you the heart wrenching, I'm sharing what CHD is. The heart wrenching part of it.
It is this.
Natalie
Zachary
And it is funerals for babies or children who passed away far too young.
It isn't pretty. But it is very real.
There is hope, though. Back when Zachy was born, we were hard pressed to find anything regarding TAPVR on the Internet. Not so much, anymore. And through networking sites like Facebook, we are able to connect with so many more people, and spread the word.
CHD is real.
Tuesday, May 11, 2010
Day of Rejoicing
Today, Zachy and Natalie both had appointments with the cardiologist. It was quite funny when they brought us back to the exam room. I only had Matthew, Zachy, and Natalie with me. We went to a tiny exam room. A nurse took us. Zachy got on the bed and she started working with his pacemaker. At the same time, another nurse was doing an EKG on Natalie. Then, two residents came in...one to ask me questions about Zachy, one about Natalie. We were all crammed into this little room, and it just made me chuckle.
So Zachy is doing great. His pacemaker battery still says it will last 5-7 years. Great news. The only downer was that the doctor said if Zachy grows like Matthew, then we'll be needing to replace the lead wires sooner than they thought. That's kind of a bummer. It was so hard to get those leads in, I hate to think of how it will go next time. But, that's several years from now...no sense thinking about it now. He goes back in six months, for his last visit before we move.
Good news for Natalie too. Her heart looks great. She does have a bit of narrowing at the repair site, but nothing to worry about. The doc thinks that it would be good in a couple years to do an MRI to see the structure of her heart better. However, he won't be her doctor in a couple of years, so we'll see what the new doc says. The most exciting thing is she has graduated to 6 month visits. She will go one more time with Zachy. So hard to believe, but oh so wonderful!
So Zachy is doing great. His pacemaker battery still says it will last 5-7 years. Great news. The only downer was that the doctor said if Zachy grows like Matthew, then we'll be needing to replace the lead wires sooner than they thought. That's kind of a bummer. It was so hard to get those leads in, I hate to think of how it will go next time. But, that's several years from now...no sense thinking about it now. He goes back in six months, for his last visit before we move.
Good news for Natalie too. Her heart looks great. She does have a bit of narrowing at the repair site, but nothing to worry about. The doc thinks that it would be good in a couple years to do an MRI to see the structure of her heart better. However, he won't be her doctor in a couple of years, so we'll see what the new doc says. The most exciting thing is she has graduated to 6 month visits. She will go one more time with Zachy. So hard to believe, but oh so wonderful!
Tuesday, March 30, 2010
Just One More Reason I Hate You, CHD...
Last night, Zachy asked me if I thought we were going to have another good Christmas this year.
I told him that sure we would
He then asked if we were going to have another baby this Christmas.
I told him that no, we wouldn't be.
He was so sad and asked me why. Then Dillon chimed in, "yes, why not?"
I had to explain to them that not all babies with CHDs live, and I could not handle losing one of them. It would just be too much.
Dillon said, "yes, but isn't it really rare to have three babies with heart defects?"
Then I had to explain that it is indeed, very, very rare...but it is also incredibly rare to have two with the same defect. A rare defect, at that.
Zachy then told me he guessed it wouldn't be a good Christmas this year,after all, not without a new baby.
Yes, CHD, we would have loved to have more kids, but you have ruined those plans for us. I hate you intensely because of that. I grieve the children we won't have, because of you. I hate you.
I told him that sure we would
He then asked if we were going to have another baby this Christmas.
I told him that no, we wouldn't be.
He was so sad and asked me why. Then Dillon chimed in, "yes, why not?"
I had to explain to them that not all babies with CHDs live, and I could not handle losing one of them. It would just be too much.
Dillon said, "yes, but isn't it really rare to have three babies with heart defects?"
Then I had to explain that it is indeed, very, very rare...but it is also incredibly rare to have two with the same defect. A rare defect, at that.
Zachy then told me he guessed it wouldn't be a good Christmas this year,after all, not without a new baby.
Yes, CHD, we would have loved to have more kids, but you have ruined those plans for us. I hate you intensely because of that. I grieve the children we won't have, because of you. I hate you.
Thursday, March 25, 2010
Not there yet
Tuesday night, our family attended a Mended Little Hearts meeting. I've been somewhat involved in this group since moving here. It's been really hit or miss with the group because I often feel further out than most of the other families. I wanted to be involved to support people, just never got the opportunity.
Fast forward to this year. I'm right back where I started. So, we decided to get more involved in the group. I really want to be on the support side of things, and I really thought I was ready.
However, on Tuesday, the leader was talking about all the different aspects of the group. Be it support or being supported. She said we are all in different places on this journey. I was fighting tears the whole time, for some reason.
I guess I'm not as ready as I wanted to be.
It's strange, really. I feel like I'm in two different places on this journey. I no longer question why Zachy was born with TAPVR, but I do with Natalie. I no longer cry over Zachy, but I do over Natalie. I guess there are things that apply to both of them, like why did this happen twice? I should say why did it happen at all, but it's always, why twice.
I truck along, usually happy, but sometimes, out of the blue, this overwhelming sadness comes.
I just really don't know where I am. And I'm not sure I need to know. I guess I just need to be. Where ever, and however that is.
Fast forward to this year. I'm right back where I started. So, we decided to get more involved in the group. I really want to be on the support side of things, and I really thought I was ready.
However, on Tuesday, the leader was talking about all the different aspects of the group. Be it support or being supported. She said we are all in different places on this journey. I was fighting tears the whole time, for some reason.
I guess I'm not as ready as I wanted to be.
It's strange, really. I feel like I'm in two different places on this journey. I no longer question why Zachy was born with TAPVR, but I do with Natalie. I no longer cry over Zachy, but I do over Natalie. I guess there are things that apply to both of them, like why did this happen twice? I should say why did it happen at all, but it's always, why twice.
I truck along, usually happy, but sometimes, out of the blue, this overwhelming sadness comes.
I just really don't know where I am. And I'm not sure I need to know. I guess I just need to be. Where ever, and however that is.
Friday, March 19, 2010
Unbreakable Bond
I have been meaning to write about this..and every day it gets better.
The bond between Zachy and Natalie is unbelievable.
Zachy tells her every day that he is so glad she didn't die, and that God let her stay with us. He truly means it.
He kisses her all the time and is always whispering in her ears.
Today, he asked me if we were going to have anymore babies.
I explained to him that I didn't know, because I couldn't have handled if either of them had actually died, and we weren't sure we wanted to risk that again.
He said, "that's why I want to protect babies. I want to be a doctor"
"oh really? A doctor that takes care of babies? Or a doctor that takes care of babies hearts?"
"A doctor that takes care of their hearts. I don't ever want a baby to die because of their heart"
This is the first time he has expressed an interest in being a doctor.
We have often asked him if he wanted to grow up and be like Dr. Bush, and the answer was always no.
Apparently, seeing what it does to someone, other than yourself, totally changes things.
He never used to really talk about his heart, but now he does.
He tells me, "me and Natalie have the specialist hearts in the family".
He loves her so deeply, and it touches me so much. They will be bound for life.
He is young, and time will tell if he becomes a pediatric cardiologist, but I can't imagine anyone more empathetic than him.
The bond between Zachy and Natalie is unbelievable.
Zachy tells her every day that he is so glad she didn't die, and that God let her stay with us. He truly means it.
He kisses her all the time and is always whispering in her ears.
Today, he asked me if we were going to have anymore babies.
I explained to him that I didn't know, because I couldn't have handled if either of them had actually died, and we weren't sure we wanted to risk that again.
He said, "that's why I want to protect babies. I want to be a doctor"
"oh really? A doctor that takes care of babies? Or a doctor that takes care of babies hearts?"
"A doctor that takes care of their hearts. I don't ever want a baby to die because of their heart"
This is the first time he has expressed an interest in being a doctor.
We have often asked him if he wanted to grow up and be like Dr. Bush, and the answer was always no.
Apparently, seeing what it does to someone, other than yourself, totally changes things.
He never used to really talk about his heart, but now he does.
He tells me, "me and Natalie have the specialist hearts in the family".
He loves her so deeply, and it touches me so much. They will be bound for life.
He is young, and time will tell if he becomes a pediatric cardiologist, but I can't imagine anyone more empathetic than him.
Monday, March 15, 2010
Dear TAPVR
Dear TAPVR and your faithful sidekick ASD,
I'm writing to you because they say that sometimes it is easier to talk about your feelings in writing. I'm willing to give it a shot, because I have a bone to pick with you.
You see, TAPVR, I don't particularly care for uninvited guests. And you have chosen to come to our home not once, but twice. You crept up silently, before you so rudely barged in.
Most guests come to be the life of the party. You, on the other hand, came to suck the life out of my children. I guess no one informed you that you were coming to the wrong house, because you see, my children are much stronger than you.
I guess I'm not labeling you correctly. Guests,eventually leave. But you will never leave, will you? No, you will always be around, until the day I die. When my baby has a hard time breathing, you will be the first thought that comes to the doctor's minds. They will do x-rays to be sure blood isn't backing up into her precious little lungs, because of you. When my little boy tires, it is you who will pop up into everyone's minds again.
It is also you who my kids will continue beating, every day of their lives. Again, I'm sorry no one informed you of their ability to do that.
I don't like you. In fact, I hate you. And I don't hate easily. In fact, I can't think of anyone else I hate. To hate is to murder. How I wish I could literally murder you. I would do it in a heartbeat...no pun intended.
I guess though, that I do owe you some thanks. How can that be?
Because of you, I have fallen to my knees more than I would have had you not shown your face. I'm so ashamed to admit that.
You have taught me not to take anything for granted. So many women get pregnant and just assume their baby will be healthy. Not me, no, you took that naivety from me.
You taught me just how precious life is, and that in a beat of a heart it can be gone.
Lastly, you have shown me how strong my children are. Oh how I admire them. I wish I was that strong. I know though, that all of our strength comes from our heavenly Father.
For these things, I thank you.
I hate you and wish I didn't know you, but I do appreciate all you have taught me.
Your host..forever,
The mom of 2 of the most precious babies, who just so happen to know you far too well.
I'm writing to you because they say that sometimes it is easier to talk about your feelings in writing. I'm willing to give it a shot, because I have a bone to pick with you.
You see, TAPVR, I don't particularly care for uninvited guests. And you have chosen to come to our home not once, but twice. You crept up silently, before you so rudely barged in.
Most guests come to be the life of the party. You, on the other hand, came to suck the life out of my children. I guess no one informed you that you were coming to the wrong house, because you see, my children are much stronger than you.
I guess I'm not labeling you correctly. Guests,eventually leave. But you will never leave, will you? No, you will always be around, until the day I die. When my baby has a hard time breathing, you will be the first thought that comes to the doctor's minds. They will do x-rays to be sure blood isn't backing up into her precious little lungs, because of you. When my little boy tires, it is you who will pop up into everyone's minds again.
It is also you who my kids will continue beating, every day of their lives. Again, I'm sorry no one informed you of their ability to do that.
I don't like you. In fact, I hate you. And I don't hate easily. In fact, I can't think of anyone else I hate. To hate is to murder. How I wish I could literally murder you. I would do it in a heartbeat...no pun intended.
I guess though, that I do owe you some thanks. How can that be?
Because of you, I have fallen to my knees more than I would have had you not shown your face. I'm so ashamed to admit that.
You have taught me not to take anything for granted. So many women get pregnant and just assume their baby will be healthy. Not me, no, you took that naivety from me.
You taught me just how precious life is, and that in a beat of a heart it can be gone.
Lastly, you have shown me how strong my children are. Oh how I admire them. I wish I was that strong. I know though, that all of our strength comes from our heavenly Father.
For these things, I thank you.
I hate you and wish I didn't know you, but I do appreciate all you have taught me.
Your host..forever,
The mom of 2 of the most precious babies, who just so happen to know you far too well.
Thursday, March 4, 2010
The Wait
Part 1
.Part 2
The next morning, I was dying to get to my baby. Of course, I had to wait for my doctor to discharge me. Unfortunately, I didn't see her until about one in the afternoon. She had no idea that Natalie had been transferred, and immediately discharged me when she heard.
Matt took me to the other hospital, where I was finally reunited with our sweet girl.
We didn't get to stay too long with her because the cardiologist was there and took us into a room to show us the angiogram they had done that morning. He also told us she would be having her surgery on Friday or Monday. It was Wednesday. Later that day, we were told it would for sure be Monday. The reason for the wait was to get her eating well. Apparently, feeding issues are the main reason a baby stays in the NICU after surgery.
The end of the week was pretty uneventful. Natalie looked so good that it was very, very hard for me to tell my head she did indeed need surgery.
It was quite the emotional roller coaster, that week. For one thing, I had all the post partum hormones on board, and they were swinging.
The other thing was, when you are waiting for open heart surgery, you flip between being so thankful you get to wait, and wanting it done RIGHT NOW. You know, just in case they wait too long.
I wanted to be with her every moment, in the back of my head was the thought that this could be the only week we had with her. I don't know that you can understand that. I think any heart mom can, but unless you've been there, I'm not sure you get it, completely.
Unfortunately, there was no way for us to stay at the hospital. So we were commuting back and forth. This meant we were normally at the hospital from about 11 till 6. That wasn't nearly enough time for me. While we were there, I was nursing her, and pumping. She was feeding very well.
On Saturday, things started to change.
While we were there, her O2 sats were dropping. The alarms would sound at 75 and it was going off almost constantly. Finally, they just muted it.
By Sunday they had set the alarm at 65. Her sats were still low, and her respirations were up. So in addition to the alarms for her sats going off, the alarms for her respirations was going off as well.
Being her parents, this was so stressful for us. In our minds at any moment she could crash. Although, I don't think that's how it works, but again, as her parent, that's how your mind goes.
Sunday, Matt's parents also flew in to be with us. We are so very grateful for all the support from our family, and were very, very glad they came to be with us.
Monday morning was surgery. For some reason, she was the second case, so we had to wait on the surgeon.
In the NICU, we noticed her nails and lips were blue. The nurse said it was definitely time to do the surgery.
I felt like it was almost like watching someone die. Each day, something new happened. It was really rough.
We ended going to the holding room around noon. The poor baby was so hungry and crying like crazy by then.
I was trying to hold it together. All I could think about was what if she didn't make it through surgery. And the fact that after this, everything may change. I couldn't even hold her because she was attached to several lines. I just wanted to scoop her up and snuggle with her and nurse her. All I could do was rub her head and talk to her while she cried. At one point, it was too much for me and I just had to sit down. I felt like I was betraying her, sitting there and not being with her. I just felt so helpless. I shed so many tears, and said so many prayers.
Finally, they took her back. Again with the mixed feelings. Relief that if all went well, she would be fixed. Sadness to know that if all went well, she would be hurting. And fear of it not going well. I wanted to take her and just run and never deal with any of it. I wanted it all gone.
We headed to the waiting room to wait for what would feel like an eternity.
Finally, the cardiologist came to talk to us and tell us everything went well.
The tears just poured out. I was so very, very relieved.
We would head to the PICU for a bit of recovery before being sent back to the NICU.
In a way, the ride was just beginning. We didn't know what we were in for, and it would probably be what brought me to needing to write all of this out. It was very, very difficult, but that's a different story, for a different entry.
.Part 2
The next morning, I was dying to get to my baby. Of course, I had to wait for my doctor to discharge me. Unfortunately, I didn't see her until about one in the afternoon. She had no idea that Natalie had been transferred, and immediately discharged me when she heard.
Matt took me to the other hospital, where I was finally reunited with our sweet girl.
We didn't get to stay too long with her because the cardiologist was there and took us into a room to show us the angiogram they had done that morning. He also told us she would be having her surgery on Friday or Monday. It was Wednesday. Later that day, we were told it would for sure be Monday. The reason for the wait was to get her eating well. Apparently, feeding issues are the main reason a baby stays in the NICU after surgery.
The end of the week was pretty uneventful. Natalie looked so good that it was very, very hard for me to tell my head she did indeed need surgery.
It was quite the emotional roller coaster, that week. For one thing, I had all the post partum hormones on board, and they were swinging.
The other thing was, when you are waiting for open heart surgery, you flip between being so thankful you get to wait, and wanting it done RIGHT NOW. You know, just in case they wait too long.
I wanted to be with her every moment, in the back of my head was the thought that this could be the only week we had with her. I don't know that you can understand that. I think any heart mom can, but unless you've been there, I'm not sure you get it, completely.
Unfortunately, there was no way for us to stay at the hospital. So we were commuting back and forth. This meant we were normally at the hospital from about 11 till 6. That wasn't nearly enough time for me. While we were there, I was nursing her, and pumping. She was feeding very well.
On Saturday, things started to change.
While we were there, her O2 sats were dropping. The alarms would sound at 75 and it was going off almost constantly. Finally, they just muted it.
By Sunday they had set the alarm at 65. Her sats were still low, and her respirations were up. So in addition to the alarms for her sats going off, the alarms for her respirations was going off as well.
Being her parents, this was so stressful for us. In our minds at any moment she could crash. Although, I don't think that's how it works, but again, as her parent, that's how your mind goes.
Sunday, Matt's parents also flew in to be with us. We are so very grateful for all the support from our family, and were very, very glad they came to be with us.
Monday morning was surgery. For some reason, she was the second case, so we had to wait on the surgeon.
In the NICU, we noticed her nails and lips were blue. The nurse said it was definitely time to do the surgery.
I felt like it was almost like watching someone die. Each day, something new happened. It was really rough.
We ended going to the holding room around noon. The poor baby was so hungry and crying like crazy by then.
I was trying to hold it together. All I could think about was what if she didn't make it through surgery. And the fact that after this, everything may change. I couldn't even hold her because she was attached to several lines. I just wanted to scoop her up and snuggle with her and nurse her. All I could do was rub her head and talk to her while she cried. At one point, it was too much for me and I just had to sit down. I felt like I was betraying her, sitting there and not being with her. I just felt so helpless. I shed so many tears, and said so many prayers.
Finally, they took her back. Again with the mixed feelings. Relief that if all went well, she would be fixed. Sadness to know that if all went well, she would be hurting. And fear of it not going well. I wanted to take her and just run and never deal with any of it. I wanted it all gone.
We headed to the waiting room to wait for what would feel like an eternity.
Finally, the cardiologist came to talk to us and tell us everything went well.
The tears just poured out. I was so very, very relieved.
We would head to the PICU for a bit of recovery before being sent back to the NICU.
In a way, the ride was just beginning. We didn't know what we were in for, and it would probably be what brought me to needing to write all of this out. It was very, very difficult, but that's a different story, for a different entry.
Wednesday, March 3, 2010
Caridologist appt.
I'm taking a little break from my story to let you know about Natalie's appointment yesterday.
She weighs 11 pounds 2 ounces now. I knew once the lasix was stopped she'd start putting on the weight, and she has. Almost 2 pounds in a month! WAY TO GO NATALIE!!
She has an upper left pulmonary vein that is narrow..however, it has always been narrow. If you look at the picture, you can see that it actually attaches to the lower left pulmonary vein. It's something that we have to keep an eye on. If it gets too narrow, it may need surgery. The doctor said that since it is only one vein, if she doesn't have any issues then it may not need anything. We'll pray for that!
Also, she has a bit of narrowing at the repair site. This is the one that will be more important. As she grows, the scar may or may not grow well with her. If it doesn't, then they will have to redo things and fix that. If it stays the same narrowness (is that a word?!?!) that it is now, it should be fine. Again, we're praying for that!
In a few months, Dr Bush thinks he will probably do an MRI to see things more clearly, but maybe not.
It feels like everything is wait and see! God really must think I need to work on my patience. Who am I kidding? He's right!!
Also, Dr Bush still thinks her rhythms are good. If she needs paced he thinks it won't be for "decades and decades". I'll take that!! None of this four year old business.
So for now, we wait. Which is good. I'd rather have that then some issue that needs to be taken care of right now.
Here are some pictures from before her heart was fixed.
The first is her pulmonary veins that are clearly, not attached to the back of her heart. The vein that they are attached to, isn't even supposed to be there.
The second is just showing how much bigger the right half of her heart was. It is all back to it's normal size now, thank goodness!
She weighs 11 pounds 2 ounces now. I knew once the lasix was stopped she'd start putting on the weight, and she has. Almost 2 pounds in a month! WAY TO GO NATALIE!!
She has an upper left pulmonary vein that is narrow..however, it has always been narrow. If you look at the picture, you can see that it actually attaches to the lower left pulmonary vein. It's something that we have to keep an eye on. If it gets too narrow, it may need surgery. The doctor said that since it is only one vein, if she doesn't have any issues then it may not need anything. We'll pray for that!
Also, she has a bit of narrowing at the repair site. This is the one that will be more important. As she grows, the scar may or may not grow well with her. If it doesn't, then they will have to redo things and fix that. If it stays the same narrowness (is that a word?!?!) that it is now, it should be fine. Again, we're praying for that!
In a few months, Dr Bush thinks he will probably do an MRI to see things more clearly, but maybe not.
It feels like everything is wait and see! God really must think I need to work on my patience. Who am I kidding? He's right!!
Also, Dr Bush still thinks her rhythms are good. If she needs paced he thinks it won't be for "decades and decades". I'll take that!! None of this four year old business.
So for now, we wait. Which is good. I'd rather have that then some issue that needs to be taken care of right now.
Here are some pictures from before her heart was fixed.
The first is her pulmonary veins that are clearly, not attached to the back of her heart. The vein that they are attached to, isn't even supposed to be there.
The second is just showing how much bigger the right half of her heart was. It is all back to it's normal size now, thank goodness!
Sunday, January 17, 2010
Update on Natalie
What a long week this has been. Natalie had her surgery on Monday. Surgery went well. The day after surgery Natalie did GREAT. They extubated her and we got to hold her all day. She even nursed quite a bit on Tuesday. By Tuesday evening they moved her from PICU to NICU. This was a great step. And they had said she was doing so well that she would probably be home by the weekend.
However, Wednesday's chest x-ray showed fluid around her right lung. The dr tried to drain it just with a needle, but only got 10 ccs. They knew there was more so opted to do a chest tube. As of today that tube has drained over 200 ccs of fluid. A lot of fluid for a little baby.
The day after the tube was placed the nurse let us hold her and nurse. Since then, no nurse has let us hold her. :-(
Yesterday, they told us that she now had fluid around her left lung and had to do another chest tube on that side.
Today, we found out she has chylothorax...basically the fluid she is having is lymph. So, they put her on a special formula that has a very low fat content, to try and seal that up.
At this point, we've been told she will be in the NICU indefinitely. Most likely at least 2 more weeks.
My mom and Dave are still here, and Matt's parents have been here the last week. They leave tomorrow. I have no idea what we would do without them...it is really hard trying to figure out how to divide our time between the hospital and the kids. Thankfully, Matt has taken the month of January off. It's just been really hard.
Prayers would be appreciated. She's a little fighter and I know we'll get through this, it's just a matter of time.
I cannot wait to get her home with us, and to be able to snuggle with her whenever I want.
However, Wednesday's chest x-ray showed fluid around her right lung. The dr tried to drain it just with a needle, but only got 10 ccs. They knew there was more so opted to do a chest tube. As of today that tube has drained over 200 ccs of fluid. A lot of fluid for a little baby.
The day after the tube was placed the nurse let us hold her and nurse. Since then, no nurse has let us hold her. :-(
Yesterday, they told us that she now had fluid around her left lung and had to do another chest tube on that side.
Today, we found out she has chylothorax...basically the fluid she is having is lymph. So, they put her on a special formula that has a very low fat content, to try and seal that up.
At this point, we've been told she will be in the NICU indefinitely. Most likely at least 2 more weeks.
My mom and Dave are still here, and Matt's parents have been here the last week. They leave tomorrow. I have no idea what we would do without them...it is really hard trying to figure out how to divide our time between the hospital and the kids. Thankfully, Matt has taken the month of January off. It's just been really hard.
Prayers would be appreciated. She's a little fighter and I know we'll get through this, it's just a matter of time.
I cannot wait to get her home with us, and to be able to snuggle with her whenever I want.
Saturday, January 9, 2010
Short update
I just wanted to let everyone know that Natalie Grace was born on January 5. She weighed 8lbs 13oz and was 19 inches long.
She is about the cutest thing I've ever seen!
I was induced at about 7 AM and she was born at 1:32 PM. Once things started going, it was a pretty intense labor. She was born sunny side up like Zachary which made things incredibly painful. But, we survived.
After having her with us for a couple hours the nurse took her to be "transitioned". This is a time they give them a bath and just generally look the baby over.
During this time, the nurse noticed she was "slightly dusky" and she did a pulse ox test. Pulse ox tests are not routine, for reasons I cannot fathom. Her O2 sats were in the low 90s so the nurse called in the ped.
When Matt went to check on Natalie he was told we were waiting on the pediatrician. At that point, Matt mentioned Zachary and his heart defect, TAPVR.
The nurse spread the word and shortly the neonatologist was called in. He explained to us all the tests that needed to be run before calling the cardiologist. They then transferred her to the NICU, and we were told we would have some news in about an hour.
About an hour later, we went down to the NICU, where we were told that all the tests indicated it was probably her heart, and they were waiting on the cardiolgist to get there to do an echo.
When that was done we were taken to a conference room (never a good sign) where we were told that Natalie has the same defect as Zachary. She has unobstructed, supracardiac TAPVR. What a blow! This defect is so very rare to begin with, and it is even more rare for it to repeat in siblings.
She was then transferred to a different hospital. I had to stay the night at the other hospital, which was very hard for me. Matt went over with Natalie.
The good news is, she is in much better shape than Zachary was. She isn't even on any oxygen. She will have her repair on Monday. It is so very hard to look at her and know that this HAS to happen for her to survive, she just seems so healthy.
So for now, we sit at the hospital holding her, and loving on her. Come Monday, all that will change and we won't be able to hold her for awhile. Breaks my heart!
Please remember Natalie in your prayers this upcoming week, she could really use them!
She is about the cutest thing I've ever seen!
I was induced at about 7 AM and she was born at 1:32 PM. Once things started going, it was a pretty intense labor. She was born sunny side up like Zachary which made things incredibly painful. But, we survived.
After having her with us for a couple hours the nurse took her to be "transitioned". This is a time they give them a bath and just generally look the baby over.
During this time, the nurse noticed she was "slightly dusky" and she did a pulse ox test. Pulse ox tests are not routine, for reasons I cannot fathom. Her O2 sats were in the low 90s so the nurse called in the ped.
When Matt went to check on Natalie he was told we were waiting on the pediatrician. At that point, Matt mentioned Zachary and his heart defect, TAPVR.
The nurse spread the word and shortly the neonatologist was called in. He explained to us all the tests that needed to be run before calling the cardiologist. They then transferred her to the NICU, and we were told we would have some news in about an hour.
About an hour later, we went down to the NICU, where we were told that all the tests indicated it was probably her heart, and they were waiting on the cardiolgist to get there to do an echo.
When that was done we were taken to a conference room (never a good sign) where we were told that Natalie has the same defect as Zachary. She has unobstructed, supracardiac TAPVR. What a blow! This defect is so very rare to begin with, and it is even more rare for it to repeat in siblings.
She was then transferred to a different hospital. I had to stay the night at the other hospital, which was very hard for me. Matt went over with Natalie.
The good news is, she is in much better shape than Zachary was. She isn't even on any oxygen. She will have her repair on Monday. It is so very hard to look at her and know that this HAS to happen for her to survive, she just seems so healthy.
So for now, we sit at the hospital holding her, and loving on her. Come Monday, all that will change and we won't be able to hold her for awhile. Breaks my heart!
Please remember Natalie in your prayers this upcoming week, she could really use them!
Sunday, November 2, 2008
Heart Video
OK, as if I'm not emotional enough these days...a mom on my heart list sent this video. Her son is Brayden.
This is so cool that I'm even removing my Christmas music for awhile so everyone can see just how awesome this is.
Of course, I cry through it like a big ol' baby!
*edited to add...if you can't tell, all of these are heart defects.
This is so cool that I'm even removing my Christmas music for awhile so everyone can see just how awesome this is.
Of course, I cry through it like a big ol' baby!
*edited to add...if you can't tell, all of these are heart defects.
Wednesday, October 22, 2008
Drowning
What a far cry from the last post, where I said I was full. I still am. I just feel like now I'm drowning under all the fullness.
Things are going well. I just have a lot to do, and it's ok. It's all good. But there is something that is weighing so very heavy on me. I had been telling Matt I feel like the weight of the world is on my shoulders, and I didn't know why. Just now, it hit me.
It's amazing how something can stress you out so much that you push it far down and pretend to not be worried about it. But it is still there, festering, weighing down like a ton of bricks.
What is worrying me, you may be asking.
Zachy.
All his telephone reports from his pacemaker have been great. But, in the last few weeks, he has gotten so very tired. He can no longer make it through a day without crashing. It's de ja vu, and quite frankly, it scares the life out of me.
His pulse is hanging in right at 80, so the pacemaker is working. Why could this be happening?
I'm scared. So very scared. Since being paced, they haven't measured his heart. They said it would take a while for it to go back to his normal size, but at the same time, they have never promised us that it would return back to normal. What if it hasn't? What if he is still in the early stages of heart failure? Why am I even going there? Everything will be great. He sees his doc the first week of November. But in the meantime, I'm scared. I'm so very, very scared. Something seems off. I'm praying for something like a growth spurt, but I don't know. Would that knock a 5 year old kid out, every. single. day.? He had been doing so well...what's happening??
Things are going well. I just have a lot to do, and it's ok. It's all good. But there is something that is weighing so very heavy on me. I had been telling Matt I feel like the weight of the world is on my shoulders, and I didn't know why. Just now, it hit me.
It's amazing how something can stress you out so much that you push it far down and pretend to not be worried about it. But it is still there, festering, weighing down like a ton of bricks.
What is worrying me, you may be asking.
Zachy.
All his telephone reports from his pacemaker have been great. But, in the last few weeks, he has gotten so very tired. He can no longer make it through a day without crashing. It's de ja vu, and quite frankly, it scares the life out of me.
His pulse is hanging in right at 80, so the pacemaker is working. Why could this be happening?
I'm scared. So very scared. Since being paced, they haven't measured his heart. They said it would take a while for it to go back to his normal size, but at the same time, they have never promised us that it would return back to normal. What if it hasn't? What if he is still in the early stages of heart failure? Why am I even going there? Everything will be great. He sees his doc the first week of November. But in the meantime, I'm scared. I'm so very, very scared. Something seems off. I'm praying for something like a growth spurt, but I don't know. Would that knock a 5 year old kid out, every. single. day.? He had been doing so well...what's happening??
Tuesday, August 26, 2008
Come back please, and comment!
Will the reader who searched for "post TAPVR repair & pacemakers." to get to my site please come back and post a comment? I can only assume that you too, are dealing with a TAPVR kiddo being paced. I would love to chat with you! Please come back! :-)
Thursday, February 14, 2008
Just the facts please
Today is Congenital Heart Defect awareness day. Here are some facts you need to know.
~~1 in 85 babies in the US will be born with a CHD. This does NOT include the babies who are lost during pregnancy.
~~CHDs are the most common type of birth defect, and the #1 cause of DEATH from a birth defect
~~CHDS are 2 times as likely and kill 2 times as many children as cancer EVERY YEAR
~~ There are 35 known types of CHDs
~~Most Drs believe that CHD is a genetic defect, but new research shows that mothers who take antidepressants and painkillers while pregnant raise the risk of CHD by 3 times.
~~Many children born with a CHD will not live to see their first birthday
~~CHDs are not always found at birth. Some are found years later. And sometimes after death, when it is too late.
~~CHD can NOT be cured. The heart will NEVER be normal. It must be treated for life.
~~Only one penny of every dollar donated to the American Heart Association goes towards pediatric cardiology research.
So many people do not know about CHDs...it doesn't make the news like cancer does. Why is this? The word needs to get out so that research can be done. Zachy's surgery has only been performed for about 40 years. So much can happen in the future, but research needs to be done!!
Hug your children today, and thank God for their hearts...even if they are special hearts.
~~1 in 85 babies in the US will be born with a CHD. This does NOT include the babies who are lost during pregnancy.
~~CHDs are the most common type of birth defect, and the #1 cause of DEATH from a birth defect
~~CHDS are 2 times as likely and kill 2 times as many children as cancer EVERY YEAR
~~ There are 35 known types of CHDs
~~Most Drs believe that CHD is a genetic defect, but new research shows that mothers who take antidepressants and painkillers while pregnant raise the risk of CHD by 3 times.
~~Many children born with a CHD will not live to see their first birthday
~~CHDs are not always found at birth. Some are found years later. And sometimes after death, when it is too late.
~~CHD can NOT be cured. The heart will NEVER be normal. It must be treated for life.
~~Only one penny of every dollar donated to the American Heart Association goes towards pediatric cardiology research.
So many people do not know about CHDs...it doesn't make the news like cancer does. Why is this? The word needs to get out so that research can be done. Zachy's surgery has only been performed for about 40 years. So much can happen in the future, but research needs to be done!!
Hug your children today, and thank God for their hearts...even if they are special hearts.
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