I know I've disappeared.
It's just that I try really hard for my blog to be uplifting and encouraging to others. I'm going through a really difficult patch right now, and honestly, have a hard time coming up with positives to write about.
That sounds so bad. I am so blessed, beyond measure. How dare I say I have hard time coming up with positive posts? *sigh*
This too shall pass.
In the mean time, Miss Nannie had her second birthday yesterday! It was such an emotional day for me. I don't remember her first birthday being so emotional for me, and I can only chalk it up to being pregnant.
In pregnant news, all is trucking along without any issue. I'm almost 31 weeks, and it seems the next 9 weeks will last an eternity.
I am such an emotional mess lately, that I'm really looking forward to not crying at everything. Other than that, I feel pretty good. Starting to have sleepless nights due to be uncomfortable, but during the day, I'm good.
Matt started school again this week. He is getting his doctorate degree. Thankfully, because he's already a practicing audiologist, he can do the program online.
The rest of the kids are all doing well, just growing like weeds and keeping a smile on mama's face. :-)
Showing posts with label Natalie Grace. Show all posts
Showing posts with label Natalie Grace. Show all posts
Friday, January 6, 2012
Wednesday, June 22, 2011
Nannie and Matthew update
I was sitting down to write this post about Nannie, and realized I haven't updated on Matthew. Let me do that first.
Matthew saw the doctor last week. His pressure is creeping back up. It is 24 right now, up from 12. That is to be expected. They dropped him down to one drop, but I don't quite understand why. She expects his pressure to keep creeping up, so if you expect it to keep going up, why stop a med?? Beats me, but I'm not the doctor. Anyway, he goes back in three months. Once it hits the 30s again, she wants to redo the surgery.
I know this sounds so bad, but it is so frustrating, I just wish they would leave him alone. We are just buying time till he loses his eye. I guess any time we can buy is worth it. It's just hard watching your kids go through this garbage!
OK so Nannie. Ever since she had RSV/pneumonia/bronchiolitis in March she has had a chronic cough and runny nose. They tried antibiotics on her, with no luck. She's been to the ER where they said she had asthma and needed to see pulmonary. I know ER docs are worthless and can't be trusted to diagnose anything, so we were just waiting to see pulmonary.
That appointment was today.
The doctor said on her x-ray in May, her lungs were very over inflated. What the heck does that mean? I have no idea, probably should have asked! Anyway, he said that RSV destroys the airway. I assume the cilia, but again, I didn't ask. He said that since her RSV was so severe it could take up to two years for her to fully recover from it! Holy cow, that's a long time! He commented on how atypical her RSV was, since it hit her so hard and she was already so old. He obviously doesn't know that my family is pretty atypical! HA!! He then went on to say he had never heard of siblings with TAPVR and went on and on about how unusual that is. Really? Never heard that before! Hehe!
So, all of that to say, we are starting her on inhaled meds (pulmocort) two times a day and singulair once a day. We go back after we get home from vacation in September to see how things are. At this point, there isn't a stop time for anything. I guess we play it by ear.
So that's that. Nothing too exciting, just too long for a status update!!
Matthew saw the doctor last week. His pressure is creeping back up. It is 24 right now, up from 12. That is to be expected. They dropped him down to one drop, but I don't quite understand why. She expects his pressure to keep creeping up, so if you expect it to keep going up, why stop a med?? Beats me, but I'm not the doctor. Anyway, he goes back in three months. Once it hits the 30s again, she wants to redo the surgery.
I know this sounds so bad, but it is so frustrating, I just wish they would leave him alone. We are just buying time till he loses his eye. I guess any time we can buy is worth it. It's just hard watching your kids go through this garbage!
OK so Nannie. Ever since she had RSV/pneumonia/bronchiolitis in March she has had a chronic cough and runny nose. They tried antibiotics on her, with no luck. She's been to the ER where they said she had asthma and needed to see pulmonary. I know ER docs are worthless and can't be trusted to diagnose anything, so we were just waiting to see pulmonary.
That appointment was today.
The doctor said on her x-ray in May, her lungs were very over inflated. What the heck does that mean? I have no idea, probably should have asked! Anyway, he said that RSV destroys the airway. I assume the cilia, but again, I didn't ask. He said that since her RSV was so severe it could take up to two years for her to fully recover from it! Holy cow, that's a long time! He commented on how atypical her RSV was, since it hit her so hard and she was already so old. He obviously doesn't know that my family is pretty atypical! HA!! He then went on to say he had never heard of siblings with TAPVR and went on and on about how unusual that is. Really? Never heard that before! Hehe!
So, all of that to say, we are starting her on inhaled meds (pulmocort) two times a day and singulair once a day. We go back after we get home from vacation in September to see how things are. At this point, there isn't a stop time for anything. I guess we play it by ear.
So that's that. Nothing too exciting, just too long for a status update!!
Tuesday, March 15, 2011
Update
Yesterday, Natalie got to come home from the hospital.
What I learned through this illness is how quickly kids go downhill, and also how quickly they get better.
One day she was on oxygen, the next, going home.
I am so, so grateful to have my little girl. Things were so scary. I'm glad to be done with that, and never ever want to experience something like that again.
I am certain that RSV is the devil. Seriously. To see all the itty bitty babies on vents because of this awful illness was just heartbreaking.
But...we are home now. Ready to put it all behind us and move on.
I am so thankful to all the people who brought meals to my family, who offered to watch the kids, and most importantly, I am thankful to everyone who prayed without ceasing. God is good...all the time.
It's time to get back to living. we lost a week there, and it is hard to get back into the swing of things. Today is just a kick back and relax kind of day, even though there is much to be done. The work will always be there.
What I learned through this illness is how quickly kids go downhill, and also how quickly they get better.
One day she was on oxygen, the next, going home.
I am so, so grateful to have my little girl. Things were so scary. I'm glad to be done with that, and never ever want to experience something like that again.
I am certain that RSV is the devil. Seriously. To see all the itty bitty babies on vents because of this awful illness was just heartbreaking.
But...we are home now. Ready to put it all behind us and move on.
I am so thankful to all the people who brought meals to my family, who offered to watch the kids, and most importantly, I am thankful to everyone who prayed without ceasing. God is good...all the time.
It's time to get back to living. we lost a week there, and it is hard to get back into the swing of things. Today is just a kick back and relax kind of day, even though there is much to be done. The work will always be there.
Saturday, March 12, 2011
Stop the Ride, I Want to Get Off!
I sit here updating my little blog from a room in the PICU. We have been living here since last Saturday. One week in this little room. It's been quite the ride, and if you don't mind, I'd like to get off now.
Last Wednesday, Natalie had a bit of a cold. A little cough here and there, but nothing remarkable. I think on Thursday, I commented on Facebook that her breathing was off, but nothing too exciting, just fast breathing.
By Friday, I was calling the doctor, certain I would take her in and have them tell me it was a virus that had to run it's course. These things always happen on the weekend, so if something bad was going to happen, I needed to get into the doctor on Friday.
We went and the doctor was concerned about her mild retractions. She swabbed her for flu and RSV. The rapid test on both of those came back negative, but she had to send them off to grow more. She wasn't comfortable sending her home though, because of the retractions, and oh yes, the fever she now had. She wanted Nannie to go to the children's hospital for observation.
When we got there we were to check in through the emergency department. They didn't have a room for her, so we sat downstairs for two hours, waiting. During this time, Nan was up and down, acting pretty normal. The thought did go through my head that this was all ridiculous and total overkill.
We finally got into a room to wait through the night. Tylenol was given. Her retractions got worse and her O2 sats started to drop. I don't remember when, but at some point in the night, they started her on O2. They tried doing a breathing treatment, but that didn't help at all. In the middle of the night the resident called for another treatment, which also didn't help. We took her downstairs for a chest x-ray which revealed what they had suspected, bronchiolitis.
Through the night things worsened. At some point Saturday, they wanted another x-ray, only this time she wasn't well enough to go downstairs, they had to come to her. She went downhill that quick.
We were on an observation floor and the nurse was trying to get us into a room elsewhere because she needed more care. The residents were all dumb and no one wanted to take her. Our nurse felt she needed the PICU but they refused to take her. She was going downhill so rapidly that the nurse informed me of the response team they had there. She wanted me to know that she was right on the cusp of crashing, not a code blue, but she was certain she would be calling them to intubate her. She said you can only breathe so fast for so long before your body quits. Finally, they moved us to another room, on a regular pediatric floor.
Things continued to deteriorate. I was the only one who could see the monitors unless a nurse was physically in the room with us. We stayed on that floor for a matter of hours before they deemed her bad enough to go to the PICU. So, since Saturday, we've been here.
At first they didn't know what was wrong, but the slow test for RSV came back positive. It is a virus that just has to run it's course. By Sunday morning, her chest x-ray showed pneumonia as well.
They told me the peak of the illness was about 3-4 days. However, day after day, we saw no improvement.
She has been on high flow O2 since last Saturday night. Throughout the week they've tried to wean her, to no avail, and have in fact had to go up on the flow several times. Currently, she's on 3 liters at 50% flow.
She has developed horrible diarrhea. She did have an ND tube in, but it kept coming out so because of the dehydration from the diarrhea, she is back on IV fluids.
Yesterday, they tried to sedate her for an echo. They wanted to look at her heart just to see if anything was going on there to explain why this is taking so long. Let me tell you, she doesn't sedate well. They gave her full doses of three meds and she fought all of them. Finally, they gave up. She was soooo crabby yesterday, it was awful. It was like she would go to sleep, but her little body couldn't relax. Finally, they decided to sedate her using something that the doctor had to be present to administer. Even with that, when they pulled a sticker off her she woke up.
She has had a horrible week. Everything they do to her is so awful. They deep suction her by sending a tube up her nose down her throat and just sucking it all out. She has been on compression vest therapy where they just shake the daylights out of her to loosen the junk in her lungs. It's just been awful. She is so afraid when someone new enters the room, and it just breaks my heart.
As of yesterday, we seem to be making progress in the right direction. She went from 60% flow to 50% flow and it's just kind of a waiting game now.
When they rounded they said, "she's making progress, just slower than we'd expect, but at least she isn't backsliding".
At this point, I have no idea how much longer we'll be in the hospital. She has to be off the high flow to get out of the PICU. From there she'll spend some time on the regular pediatric floor, before being discharged.
Through all of this, I am so thankful that Matt is able to take time off to be home with the kids so I can stay with Nannie. I haven't left since Friday, but that's OK. I can't bear the thought of locking her up in the crib just so I can leave. I mean it's not like the nurses can stay with her and hold her. If she were sedated, that would be one thing, but since she's awake, nope...can't do it.
Anyway, that's where we are. Playing the waiting game. It's been a stressful ride, and I'd like to get off now!
Friday night, still in observation...I thought she looked so sick here..little did I know what was in store!
Getting sicker, I'm not sure what night this was..but she was one sick little girl.
Shaking her. This picture breaks my heart because her eyes are pleading with us to help her. I've seen that look too many times this week.
Cute dinosaur masks to nothing for 14 month olds!
This was last night....she hadn't slept all day, nor most of the night before. She's making up for it now though.
OH!!! And I forgot to mention...on Sunday, Emily and Zachy got fevers and started breathing poorly. Nan's nurse said Matt needed to take them to the ER. Thankfully, they were sent home on tylenol and fluids and are doing much better!
Last Wednesday, Natalie had a bit of a cold. A little cough here and there, but nothing remarkable. I think on Thursday, I commented on Facebook that her breathing was off, but nothing too exciting, just fast breathing.
By Friday, I was calling the doctor, certain I would take her in and have them tell me it was a virus that had to run it's course. These things always happen on the weekend, so if something bad was going to happen, I needed to get into the doctor on Friday.
We went and the doctor was concerned about her mild retractions. She swabbed her for flu and RSV. The rapid test on both of those came back negative, but she had to send them off to grow more. She wasn't comfortable sending her home though, because of the retractions, and oh yes, the fever she now had. She wanted Nannie to go to the children's hospital for observation.
When we got there we were to check in through the emergency department. They didn't have a room for her, so we sat downstairs for two hours, waiting. During this time, Nan was up and down, acting pretty normal. The thought did go through my head that this was all ridiculous and total overkill.
We finally got into a room to wait through the night. Tylenol was given. Her retractions got worse and her O2 sats started to drop. I don't remember when, but at some point in the night, they started her on O2. They tried doing a breathing treatment, but that didn't help at all. In the middle of the night the resident called for another treatment, which also didn't help. We took her downstairs for a chest x-ray which revealed what they had suspected, bronchiolitis.
Through the night things worsened. At some point Saturday, they wanted another x-ray, only this time she wasn't well enough to go downstairs, they had to come to her. She went downhill that quick.
We were on an observation floor and the nurse was trying to get us into a room elsewhere because she needed more care. The residents were all dumb and no one wanted to take her. Our nurse felt she needed the PICU but they refused to take her. She was going downhill so rapidly that the nurse informed me of the response team they had there. She wanted me to know that she was right on the cusp of crashing, not a code blue, but she was certain she would be calling them to intubate her. She said you can only breathe so fast for so long before your body quits. Finally, they moved us to another room, on a regular pediatric floor.
Things continued to deteriorate. I was the only one who could see the monitors unless a nurse was physically in the room with us. We stayed on that floor for a matter of hours before they deemed her bad enough to go to the PICU. So, since Saturday, we've been here.
At first they didn't know what was wrong, but the slow test for RSV came back positive. It is a virus that just has to run it's course. By Sunday morning, her chest x-ray showed pneumonia as well.
They told me the peak of the illness was about 3-4 days. However, day after day, we saw no improvement.
She has been on high flow O2 since last Saturday night. Throughout the week they've tried to wean her, to no avail, and have in fact had to go up on the flow several times. Currently, she's on 3 liters at 50% flow.
She has developed horrible diarrhea. She did have an ND tube in, but it kept coming out so because of the dehydration from the diarrhea, she is back on IV fluids.
Yesterday, they tried to sedate her for an echo. They wanted to look at her heart just to see if anything was going on there to explain why this is taking so long. Let me tell you, she doesn't sedate well. They gave her full doses of three meds and she fought all of them. Finally, they gave up. She was soooo crabby yesterday, it was awful. It was like she would go to sleep, but her little body couldn't relax. Finally, they decided to sedate her using something that the doctor had to be present to administer. Even with that, when they pulled a sticker off her she woke up.
She has had a horrible week. Everything they do to her is so awful. They deep suction her by sending a tube up her nose down her throat and just sucking it all out. She has been on compression vest therapy where they just shake the daylights out of her to loosen the junk in her lungs. It's just been awful. She is so afraid when someone new enters the room, and it just breaks my heart.
As of yesterday, we seem to be making progress in the right direction. She went from 60% flow to 50% flow and it's just kind of a waiting game now.
When they rounded they said, "she's making progress, just slower than we'd expect, but at least she isn't backsliding".
At this point, I have no idea how much longer we'll be in the hospital. She has to be off the high flow to get out of the PICU. From there she'll spend some time on the regular pediatric floor, before being discharged.
Through all of this, I am so thankful that Matt is able to take time off to be home with the kids so I can stay with Nannie. I haven't left since Friday, but that's OK. I can't bear the thought of locking her up in the crib just so I can leave. I mean it's not like the nurses can stay with her and hold her. If she were sedated, that would be one thing, but since she's awake, nope...can't do it.
Anyway, that's where we are. Playing the waiting game. It's been a stressful ride, and I'd like to get off now!
Friday night, still in observation...I thought she looked so sick here..little did I know what was in store!
Getting sicker, I'm not sure what night this was..but she was one sick little girl.
Shaking her. This picture breaks my heart because her eyes are pleading with us to help her. I've seen that look too many times this week.
Cute dinosaur masks to nothing for 14 month olds!
This was last night....she hadn't slept all day, nor most of the night before. She's making up for it now though.
OH!!! And I forgot to mention...on Sunday, Emily and Zachy got fevers and started breathing poorly. Nan's nurse said Matt needed to take them to the ER. Thankfully, they were sent home on tylenol and fluids and are doing much better!
Thursday, December 23, 2010
Once again, I marvel
Once again I'm marveling at God's wisdom.
Last year, at this time, I was heavily pregnant.
Christmas Eve would make me 37 weeks.
Due to a blood clotting issue, my doctor induced me at 37 weeks with Emily. We assumed the same would hold true this time.
I have always wanted a Christmas baby. I cannot imagine a better Christmas gift than a new baby.
I was so excited. This might finally be the Christmas babe I'd dreamt of.
And why not? If the doc induced me right at 37 weeks before, surely she would this time.
I knew no doctor would want to work during the holidays if they had a choice, but I still held out hope.
Except, part of me was nervous about having a Christmas baby. I told Matt that part of me really wanted a Christmas baby, but part of me was terrified. What if something was wrong with this baby? What if this baby passed away? I didn't want Christmas to forever be marred with that memory. Or the memories of open heart surgery.
I knew. Deep inside, I knew.
I look back and I marvel at God's wisdom. I can celebrate Christmas with nothing but the memory of being pregnant. Joyful memories of life within me.
You see, memories of NICU stays and open heart surgery days...they stay with you. Even if your baby goes on to be healthy, those days, they haunt you. January 11 will come, and I will remember the events of that day. I will vividly remember the feelings, seeing her for the first time, the swollen baby, the vent, the incision...all of it will come rushing back.
For Christmas though, only sweet memories linger. I am so grateful.
Thank you God, for always doing what is best for us, even when we dig our heels in and think we know better than You!!
Last year, at this time, I was heavily pregnant.
Christmas Eve would make me 37 weeks.
Due to a blood clotting issue, my doctor induced me at 37 weeks with Emily. We assumed the same would hold true this time.
I have always wanted a Christmas baby. I cannot imagine a better Christmas gift than a new baby.
I was so excited. This might finally be the Christmas babe I'd dreamt of.
And why not? If the doc induced me right at 37 weeks before, surely she would this time.
I knew no doctor would want to work during the holidays if they had a choice, but I still held out hope.
Except, part of me was nervous about having a Christmas baby. I told Matt that part of me really wanted a Christmas baby, but part of me was terrified. What if something was wrong with this baby? What if this baby passed away? I didn't want Christmas to forever be marred with that memory. Or the memories of open heart surgery.
I knew. Deep inside, I knew.
I look back and I marvel at God's wisdom. I can celebrate Christmas with nothing but the memory of being pregnant. Joyful memories of life within me.
You see, memories of NICU stays and open heart surgery days...they stay with you. Even if your baby goes on to be healthy, those days, they haunt you. January 11 will come, and I will remember the events of that day. I will vividly remember the feelings, seeing her for the first time, the swollen baby, the vent, the incision...all of it will come rushing back.
For Christmas though, only sweet memories linger. I am so grateful.
Thank you God, for always doing what is best for us, even when we dig our heels in and think we know better than You!!
Thursday, September 9, 2010
Random Pictures
We have a fairly new camera. A DSLR. I've been reading a book to try to learn how to use it better. I was just going to upload these pictures to facebook, but it was being dumb, so I'm just going to put them here.
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.
Sunday, July 18, 2010
Things I Just Don't Understand
There are things in this life that I just don't understand. Ranging from simple things to more complex things.
And sometimes, I think I may be a little crazy. But that's OK, we're all a little crazy. Right? Somebody please tell me I'm right!
For instance...
Why does Rockin Green Laundry soap work so well? I can fill my washer up with the soap and water and it's crystal clear. I add my clothes, and I can no longer see through the water. How are our clothes so dirty? I've washed clean diapers in it, same thing. How long does it take for all the built up laundry soap to be removed? Will our clothes always cause the water to be filthy? I just don't understand.
And on the topic of laundry...I don't understand how Collin can insist on wearing the same clothes day in and day out, and yet when I wash his clothes, he has a bigger pile of clothes to be put away than anyone.
How come when Matt leaves, and tells the kids they can't come with him, it suddenly becomes my fault? Today, Matt has been cleaning out the van. He took out all the seats so he could vacuum it. When he left to vacuum it, of course no one could go with him. Emily cried her eyes out. And it was me she was mad at. As if I was the one who took all the seats out and wouldn't let her go. I just don't understand.
I just don't understand how it can be, that doctors can go through years of medical school, learn a fraction of the workings of the human body, and still not believe in God. How can you learn all the intricate details of cells and think it all happened by chance? I do understand that they see people die, and it could cause them to wonder how a loving God could allow an innocent person to die. I get that. I don't get how they can't recognize all the miracles that happen around them, daily. 
And finally, how can I be going about my day, cleaning out a cupboard, and have my world flipped upside down again? Every once in awhile, this happens. Today, I was cleaning a cupboard. It happens to be the cupboard that holds some meds. I came across a bunch of tiny medicine droppers. Droppers that were given to us when we took Natalie home from the hospital. Droppers for Lasix. And my heart dropped. All the feelings came rushing back, and for a moment, it was as if someone had sucked the breath out of me.How can this still happen??? Why does this still affect me this way? Why is it so much harder this time than when it was Zachy? Or is it? Maybe it was like this with him, and I just got over it. I know I'll get over it this time too. I know I am so blessed. My baby is here. Alive. THRIVING. And yet, these things still hit me like a kick in the gut. Why?
I just don't understand.
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!
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!
Friday, February 19, 2010
The Discovery
Part 1
The morning of January 5, 2010 couldn't get here soon enough. I was suddenly tired of being pregnant, but probably more excited to finally meet our little girl. Interestingly, Zachary's birthday is August 5. We would soon come to realize all the similarities that were about to be. They would share more than just a number.
We arrived at the hospital at 5 AM. I was so afraid to get my IV. Strangely, I fear the IV more than anything else in childbirth. They took me to my room and made Matt stay in the waiting room until I was settled. I had to get my IV without Matt there to hold my hand. Thankfully, it was the best placement I'd ever had and it really was pretty simple.
The induction was started, and everything progressed as expected. I told the nurse when we started that my baby was posterior. She said we would see. I could tell though, by the movements I'd been feeling that she was facing the wrong way.
I managed to get through my sixth induced labor without an epidural for only the second time. The first being with Zachy.
As she was coming out, the doctor said, "oh, there's her face!" and the nurse asked how I knew she was face up. She was pretty surprised that I was able to tell her that. Zachy was my other sunny side up baby.
I have no idea how it came to be that with these two I didn't do an epidural. I'm sure their births were more painful than the other four together. And yet, I was determined, both times.
Natalie Grace was born at 1:32 PM weighing 8 lbs 13 oz and was 19 inches long.
When she came out, there was no putting her on my belly. They whisked her away to the warmer. She wasn't crying. I've had another baby not put on my belly because he wasn't crying. Guess who? Yep, Zachy. I'm not sure how, but they gave her apgars of 8 and 9. They got her crying and finally brought her to me. At which time I tried to nurse her. But she wouldn't latch very well. The nurse told me to go skin to skin with her to help. It did help, a little. If you're thinking that I probably had this problem with Zachy..you would be right!
Since I had had no epidural, I was able to move from the labor and delivery room to the post partum room pretty quickly. The rooms are on separate floors, and in the elevator I told Natalie that she was such a good girl. She was breathing so well and I told her she would be our baby to avoid a NICU stay. Several of the kids have grunted when they breathed and had to be checked over in the NICU, but she wasn't grunting. I was so happy!
We went to our room and Matt started calling people. He was holding her, and she wasn't wrapped in her blanket. I noticed she was a bit blue, and told Matt she must be cold and to cover her up. Right about that time, the nurse came in to take her to the nursery to transition her.
At the hospital I gave birth at, they take the baby to the nursery to give them their first bath and just check the babies over. She said it would take about an hour.
An hour came and went. Matt was still calling people. I was having quite a bit of bleeding, and asked him to please go check on her. He said we could wait for awhile, that they would bring her back, or tell us if something was wrong. More time passed and I couldn't take it anymore, I told him he had to go check on her. This time he went.
When he came back, he informed me that the nurse noticed that Natalie was a bit dusky and did a pulse ox and her O2 Sats were low. I would later come to learn that they were in the low 70s mid 60s. She had put blow by oxygen in her crib and had called the pediatrician. He then asked if I thought we should tell her about Zachary's heart. I said of course we needed to do that.
The next time he returned he said the plan had changed. The neonatalogist was now coming instead of the pediatrician.
The neonatalogist came and talked to us and said he had to take her to the NICU and run several tests to see if we were dealing with her heart or something else. He talked to us for quite awhile about different things that could be wrong, but it is all a blur to me.
We went with him to the nursery to see her before they took her to the NICU. Also, our kids had just arrived at the hospital with their grandparents. They saw Natalie through the window before they took her away. During that visit, the doctor told us we should have some answers in about an hour.
The kids went home, and we waited. An hour passed and we headed downstairs.
I will never forget walking into the NICU that night. The doctor was a retired military doctor and this was his first night at this hospital. As we walked in, I overheard him talking with the nurses about where they transfer babies to. I felt my face go white and turned to Matt and said, "they're transporting her". Matt said we didn't know that for sure.
The doctor then came and said the tests indicated that it was her heart, and the cardiologist had been called in. My heart sank. I think at that point, though I didn't want to admit it, I knew exactly what was coming.
Right away, the cardiologist was there to do an echo. He introduced himself and then asked us to leave and wait out in the hallway while they did the echo.
We made our way to the hallway to wait. What a long day of waiting it had been.
We tried to make small talk, but we both knew what was happening.
At one point I said the echo was taking too long, and that something was wrong with her heart, but surely it couldn't be TAPVR. I hoped and prayed it was something simple.
After what felt like an eternity, a nurse came out to the hallway and announced that the doctor wanted to speak to us in the conference room. Just so you know, if a doctor wants to talk to you in a conference room, it's usually not good.
I'll never forget the doctor coming and the words that followed.
He said, "I understand you have a son with TAPVR"
"yes," we answered.
"Do you know what type he has"
"yes, supracardiac".
*sigh* "That's exactly what we found with your daughter."
I knew it was coming..I did..but I still felt like all the wind had been knocked out of me, and that this was a horrible dream.
How could this be happening again?? As the doctor continued to talk I just kept wondering why and how. I have no idea what else he said. I was dying inside. I wanted to rewind the day. I wanted her back inside me, where she was safe. I wanted a do-over. I wanted anything but to be sitting there listening to this. I was holding tight to Matt's hand, probably tighter than while I was in labor. And as strong as I tried to be, the tears were just flowing..silently. He kept talking..I remember thinking, "please, just let me go be with my baby". I do know he was talking about how unusual this is, that he's never seen TAPVR repeat in siblings, that this just doesn't happen.
But it does happen.
And it did happen.
And a piece of me died.
I was changed when we went through this with Zachy, I didn't realize I'd be changed even more, but I was. I haven't decided if it is a change for the better or worse.
Finally, we got to go be with our sweet, sweet girl. The transport team was already there, but bless them, they just hung out for awhile and let me hold my baby. For that,I was very grateful.
Sending her to a hospital away from me was so hard.
It came time for her to go. I didn't want to let go. Somehow, I managed.
Before they took her, I had Matt take some pictures of her. I knew there would be very, very few pictures of her without a scar on her chest. For the rest of her life.
We headed back upstairs to my room so Matt could get his stuff and follow Natalie.
My nurse asked me how it went. We had to tell her it wasn't good. She said, "lucky for you, you have a nurse who believes in the prayer. And you have a nurse who serves a God that answers prayers." I will never, ever forget that. I can't remember her name, but I will never forget those words.
I truly believe that had the first nurse not decided to do a pulse ox test on Natalie, she would not have been diagnosed when she was. She seemed so healthy.
Matt left, and I was alone. What a horrible feeling, to be in a post partum room, and have no baby with you. It was just me and facebook.
I didn't sleep that night. I don't think Matt did much either. He says he did, but I know him, and I don't think he did. We knew what was coming, and it wasn't pretty. Our baby girl was fighting for her life. We know people who have lost their babies to TAPVR. We knew..all to well..what might be.
And there wasn't a thing we could do about it.
Except pray. I am eternally grateful that we serve such a loving God. A God who cares what happened to our baby. And a God who held me up, when all I wanted to do was fall into a pit of despair.
Yes, through it all, we knew...God is good.
The Birth Story
The morning of January 5, 2010 couldn't get here soon enough. I was suddenly tired of being pregnant, but probably more excited to finally meet our little girl. Interestingly, Zachary's birthday is August 5. We would soon come to realize all the similarities that were about to be. They would share more than just a number.
We arrived at the hospital at 5 AM. I was so afraid to get my IV. Strangely, I fear the IV more than anything else in childbirth. They took me to my room and made Matt stay in the waiting room until I was settled. I had to get my IV without Matt there to hold my hand. Thankfully, it was the best placement I'd ever had and it really was pretty simple.
The induction was started, and everything progressed as expected. I told the nurse when we started that my baby was posterior. She said we would see. I could tell though, by the movements I'd been feeling that she was facing the wrong way.
I managed to get through my sixth induced labor without an epidural for only the second time. The first being with Zachy.
As she was coming out, the doctor said, "oh, there's her face!" and the nurse asked how I knew she was face up. She was pretty surprised that I was able to tell her that. Zachy was my other sunny side up baby.
I have no idea how it came to be that with these two I didn't do an epidural. I'm sure their births were more painful than the other four together. And yet, I was determined, both times.
Natalie Grace was born at 1:32 PM weighing 8 lbs 13 oz and was 19 inches long.
When she came out, there was no putting her on my belly. They whisked her away to the warmer. She wasn't crying. I've had another baby not put on my belly because he wasn't crying. Guess who? Yep, Zachy. I'm not sure how, but they gave her apgars of 8 and 9. They got her crying and finally brought her to me. At which time I tried to nurse her. But she wouldn't latch very well. The nurse told me to go skin to skin with her to help. It did help, a little. If you're thinking that I probably had this problem with Zachy..you would be right!
Since I had had no epidural, I was able to move from the labor and delivery room to the post partum room pretty quickly. The rooms are on separate floors, and in the elevator I told Natalie that she was such a good girl. She was breathing so well and I told her she would be our baby to avoid a NICU stay. Several of the kids have grunted when they breathed and had to be checked over in the NICU, but she wasn't grunting. I was so happy!
We went to our room and Matt started calling people. He was holding her, and she wasn't wrapped in her blanket. I noticed she was a bit blue, and told Matt she must be cold and to cover her up. Right about that time, the nurse came in to take her to the nursery to transition her.
At the hospital I gave birth at, they take the baby to the nursery to give them their first bath and just check the babies over. She said it would take about an hour.
An hour came and went. Matt was still calling people. I was having quite a bit of bleeding, and asked him to please go check on her. He said we could wait for awhile, that they would bring her back, or tell us if something was wrong. More time passed and I couldn't take it anymore, I told him he had to go check on her. This time he went.
When he came back, he informed me that the nurse noticed that Natalie was a bit dusky and did a pulse ox and her O2 Sats were low. I would later come to learn that they were in the low 70s mid 60s. She had put blow by oxygen in her crib and had called the pediatrician. He then asked if I thought we should tell her about Zachary's heart. I said of course we needed to do that.
The next time he returned he said the plan had changed. The neonatalogist was now coming instead of the pediatrician.
The neonatalogist came and talked to us and said he had to take her to the NICU and run several tests to see if we were dealing with her heart or something else. He talked to us for quite awhile about different things that could be wrong, but it is all a blur to me.
We went with him to the nursery to see her before they took her to the NICU. Also, our kids had just arrived at the hospital with their grandparents. They saw Natalie through the window before they took her away. During that visit, the doctor told us we should have some answers in about an hour.
The kids went home, and we waited. An hour passed and we headed downstairs.
I will never forget walking into the NICU that night. The doctor was a retired military doctor and this was his first night at this hospital. As we walked in, I overheard him talking with the nurses about where they transfer babies to. I felt my face go white and turned to Matt and said, "they're transporting her". Matt said we didn't know that for sure.
The doctor then came and said the tests indicated that it was her heart, and the cardiologist had been called in. My heart sank. I think at that point, though I didn't want to admit it, I knew exactly what was coming.
Right away, the cardiologist was there to do an echo. He introduced himself and then asked us to leave and wait out in the hallway while they did the echo.
We made our way to the hallway to wait. What a long day of waiting it had been.
We tried to make small talk, but we both knew what was happening.
At one point I said the echo was taking too long, and that something was wrong with her heart, but surely it couldn't be TAPVR. I hoped and prayed it was something simple.
After what felt like an eternity, a nurse came out to the hallway and announced that the doctor wanted to speak to us in the conference room. Just so you know, if a doctor wants to talk to you in a conference room, it's usually not good.
I'll never forget the doctor coming and the words that followed.
He said, "I understand you have a son with TAPVR"
"yes," we answered.
"Do you know what type he has"
"yes, supracardiac".
*sigh* "That's exactly what we found with your daughter."
I knew it was coming..I did..but I still felt like all the wind had been knocked out of me, and that this was a horrible dream.
How could this be happening again?? As the doctor continued to talk I just kept wondering why and how. I have no idea what else he said. I was dying inside. I wanted to rewind the day. I wanted her back inside me, where she was safe. I wanted a do-over. I wanted anything but to be sitting there listening to this. I was holding tight to Matt's hand, probably tighter than while I was in labor. And as strong as I tried to be, the tears were just flowing..silently. He kept talking..I remember thinking, "please, just let me go be with my baby". I do know he was talking about how unusual this is, that he's never seen TAPVR repeat in siblings, that this just doesn't happen.
But it does happen.
And it did happen.
And a piece of me died.
I was changed when we went through this with Zachy, I didn't realize I'd be changed even more, but I was. I haven't decided if it is a change for the better or worse.
Finally, we got to go be with our sweet, sweet girl. The transport team was already there, but bless them, they just hung out for awhile and let me hold my baby. For that,I was very grateful.
Sending her to a hospital away from me was so hard.
It came time for her to go. I didn't want to let go. Somehow, I managed.
Before they took her, I had Matt take some pictures of her. I knew there would be very, very few pictures of her without a scar on her chest. For the rest of her life.
We headed back upstairs to my room so Matt could get his stuff and follow Natalie.
My nurse asked me how it went. We had to tell her it wasn't good. She said, "lucky for you, you have a nurse who believes in the prayer. And you have a nurse who serves a God that answers prayers." I will never, ever forget that. I can't remember her name, but I will never forget those words.
I truly believe that had the first nurse not decided to do a pulse ox test on Natalie, she would not have been diagnosed when she was. She seemed so healthy.
Matt left, and I was alone. What a horrible feeling, to be in a post partum room, and have no baby with you. It was just me and facebook.
I didn't sleep that night. I don't think Matt did much either. He says he did, but I know him, and I don't think he did. We knew what was coming, and it wasn't pretty. Our baby girl was fighting for her life. We know people who have lost their babies to TAPVR. We knew..all to well..what might be.
And there wasn't a thing we could do about it.
Except pray. I am eternally grateful that we serve such a loving God. A God who cares what happened to our baby. And a God who held me up, when all I wanted to do was fall into a pit of despair.
Yes, through it all, we knew...God is good.
The Birth Story
Tuesday, February 16, 2010
The Journey Begins
On May 7, 2009, my husband, Matt, and I learned that we were pregnant for the seventh time. Much to our surprise. It was definitely a pleasant surprise, but a surprise, nonetheless.
You see, for only the second time in our married life, we were actually trying to prevent a pregnancy. Not that we didn't want another baby, but we were planning a family vacation to Walt Disney World, for two weeks in May.
Back in July of 2000, we went to the World and I was six weeks pregnant. Upon returning home, I miscarried. It was devastating to lose one of our precious babies. I did not want to go back, pregnant. I didn't want to worry the whole time, and I certainly didn't want a repeat of the last time.
But, there's always a but, one night, we threw caution to the wind. And as they say, it only takes one time.
We were leaving on our trip May 9, and my period was due to start on the 10Th. I didn't expect to be pregnant, but thought I would test..just in case. Lo and behold, two gorgeous pink lines. Six really, because I had done what any good woman does, and bought a three pack of tests. I'm not one to let a test go to waste, so I used all of them. And they all told me the same, wonderful news.
The next morning, I woke up to use the restroom and was greeted by brown spotting. I was so scared we would lose the baby, but had no other choice than to just go about getting ready for our trip. Thankfully, I knew that brown meant old blood and I just might be OK.
We left on our trip, excited but scared.
On the way over (we drove) there were all kinds of pro life signs talking about when a baby's heart beats. Matt and I had fun counting how many days pregnant I was, and determined our baby's heart was indeed, already beating.
Although we were nervous about telling the kids, we knew we had to tell the eldest two, at least. We normally wait for awhile, just in case we lose another baby, but with me not being able to ride the rides, we knew they'd wonder what was up. We ended up telling all four of the boys in the pool once we got to our condo. They were all so thrilled.
We spent two weeks at Disney World. The first was excruciatingly hot, the second, it poured. Not only did it pour, but morning sickness hit with a vengeance that second week. I felt pretty miserable, but took it as a great sign that this baby was going to stick around. There had also not been anymore spotting since the first incident.
We came home and got back to life. Which for me, meant setting up appointments with my OB and the Perinatalogist.
I am considered high risk because my fourth son, Zachary, was born with a complex heart condition. It is called TAPVR, and it happens when the pulmonary veins do not connect to the heart correctly. He had open heart surgery at less than 72 hours to correct it. I also have a minor blood clotting issue, and I take baby aspirin throughout my pregnancy.
I see the peri for monthly ultra sounds to check the blood flow to be sure there are no clots. Also, to check the heart.
I was in the peri's office by seven weeks. That was when we first met baby Tarzan. We called her that because Zachary always asked if we could call our next baby, Tarzan.
It wasn't long though, until we discovered that Tarzan, was a girl. Our second daughter. How God had richly blessed us!
Around 28 weeks, I had my fetal echo cardiogram. The doctor looked long and hard, and said she saw at least two pulmonary veins, and they appeared to be draining into the left atrium, like they were supposed to. What a relief.
When I was pregnant with my number five, Emily, I was very stressed out. I was so afraid she would also have TAPVR. But she didn't, her heart is perfect.
This time around, I prayed endlessly for strength. Not once did I pray for our baby's health. I just prayed for strength to get us through whatever may come. I felt, somehow, that something was wrong. At a brunch I attended with my women's ministries group, I confided in my pastor's wife that I knew something was wrong with my baby. I told her whatever it was, it would be OK, because I knew we could get through it, but I just had a feeling something was wrong.
Appointment after appointment, the peri declared our baby healthy. And we were at such peace.
In fact, this pregnancy was a piece of cake. I felt great, until the very end, and even Matt commented on how great I seemed to be feeling. Most of the time, it felt totally surreal that I was even pregnant.
That all changed right around 36 weeks. Suddenly, I just became really uncomfortable, and ready to meet our baby. We couldn't wait.
Oh how I had wanted a Christmas baby. It wasn't meant to be, however, and my doctor scheduled me to be induced on January 5. I was due January 14, but because of the blood clotting issue, the doctor likes to induce me early. And, as bad as it sounds, I'm totally OK with that.
My mom and step dad came down at Christmas time to be here when our newest baby was born. Little did we know, just how fortunate we were that they were here.
You see, for only the second time in our married life, we were actually trying to prevent a pregnancy. Not that we didn't want another baby, but we were planning a family vacation to Walt Disney World, for two weeks in May.
Back in July of 2000, we went to the World and I was six weeks pregnant. Upon returning home, I miscarried. It was devastating to lose one of our precious babies. I did not want to go back, pregnant. I didn't want to worry the whole time, and I certainly didn't want a repeat of the last time.
But, there's always a but, one night, we threw caution to the wind. And as they say, it only takes one time.
We were leaving on our trip May 9, and my period was due to start on the 10Th. I didn't expect to be pregnant, but thought I would test..just in case. Lo and behold, two gorgeous pink lines. Six really, because I had done what any good woman does, and bought a three pack of tests. I'm not one to let a test go to waste, so I used all of them. And they all told me the same, wonderful news.
The next morning, I woke up to use the restroom and was greeted by brown spotting. I was so scared we would lose the baby, but had no other choice than to just go about getting ready for our trip. Thankfully, I knew that brown meant old blood and I just might be OK.
We left on our trip, excited but scared.
On the way over (we drove) there were all kinds of pro life signs talking about when a baby's heart beats. Matt and I had fun counting how many days pregnant I was, and determined our baby's heart was indeed, already beating.
Although we were nervous about telling the kids, we knew we had to tell the eldest two, at least. We normally wait for awhile, just in case we lose another baby, but with me not being able to ride the rides, we knew they'd wonder what was up. We ended up telling all four of the boys in the pool once we got to our condo. They were all so thrilled.
We spent two weeks at Disney World. The first was excruciatingly hot, the second, it poured. Not only did it pour, but morning sickness hit with a vengeance that second week. I felt pretty miserable, but took it as a great sign that this baby was going to stick around. There had also not been anymore spotting since the first incident.
We came home and got back to life. Which for me, meant setting up appointments with my OB and the Perinatalogist.
I am considered high risk because my fourth son, Zachary, was born with a complex heart condition. It is called TAPVR, and it happens when the pulmonary veins do not connect to the heart correctly. He had open heart surgery at less than 72 hours to correct it. I also have a minor blood clotting issue, and I take baby aspirin throughout my pregnancy.
I see the peri for monthly ultra sounds to check the blood flow to be sure there are no clots. Also, to check the heart.
I was in the peri's office by seven weeks. That was when we first met baby Tarzan. We called her that because Zachary always asked if we could call our next baby, Tarzan.
It wasn't long though, until we discovered that Tarzan, was a girl. Our second daughter. How God had richly blessed us!
Around 28 weeks, I had my fetal echo cardiogram. The doctor looked long and hard, and said she saw at least two pulmonary veins, and they appeared to be draining into the left atrium, like they were supposed to. What a relief.
When I was pregnant with my number five, Emily, I was very stressed out. I was so afraid she would also have TAPVR. But she didn't, her heart is perfect.
This time around, I prayed endlessly for strength. Not once did I pray for our baby's health. I just prayed for strength to get us through whatever may come. I felt, somehow, that something was wrong. At a brunch I attended with my women's ministries group, I confided in my pastor's wife that I knew something was wrong with my baby. I told her whatever it was, it would be OK, because I knew we could get through it, but I just had a feeling something was wrong.
Appointment after appointment, the peri declared our baby healthy. And we were at such peace.
In fact, this pregnancy was a piece of cake. I felt great, until the very end, and even Matt commented on how great I seemed to be feeling. Most of the time, it felt totally surreal that I was even pregnant.
That all changed right around 36 weeks. Suddenly, I just became really uncomfortable, and ready to meet our baby. We couldn't wait.
Oh how I had wanted a Christmas baby. It wasn't meant to be, however, and my doctor scheduled me to be induced on January 5. I was due January 14, but because of the blood clotting issue, the doctor likes to induce me early. And, as bad as it sounds, I'm totally OK with that.
My mom and step dad came down at Christmas time to be here when our newest baby was born. Little did we know, just how fortunate we were that they were here.
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