Two weeks after our initial high-risk appointment where the CDH was discovered, it was time for another one.
It's amazing how you can become an expert on something you've never heard of in just two weeks, but I really feel like a CDH expert now after reading so much on the internet and so many other blogs. I now am equipped with enough knowledge to know what kinds of questions to ask the doctor and I was very glad to finally have an appointment where I could get some answers!
Even still I was slightly terrified. Someone once said, don't ask questions unless you can handle the answers...and quite frankly, I wasn't sure I could handle the answers! I am surprisingly at peace regarding Makenna's condition, as I said in the last post, I know she will be okay. But one unpleasant answer could cause my little bubble of peace to pop and all hope to be gone.
Also, in general we haven't had any appointments that went well. Between the bleed, the cord concern, and then the CDH find, it seems as though every appointment is just set up to deliver bad news. We are doing a pretty good job staying positive through it all, but more bad news really was the last thing we wanted to hear!
Another cause for concern is the fact they wanted me to do an amnio. Around 40% of the time CDH isn't isolated...and the child will have another defect such as trisomy 13 or 18, so amnio is important to rule that out. In general this isn't that risky, there is a 1 in 1000 chance that you could have preterm labor or another complication; however, when your baby has a 1 in 3000 defect, 1 in 1000 suddenly seems a lot less impossible. At this point I was 31 weeks and rationally speaking babies survive at 31 weeks all the time...BUT, my baby can't be born here. If I go into preterm labor I will need to be airlifted to Gainesville immediately so that she can be born in a hospital that is equipped to meet her needs. This definitely added to the stress level I was feeling before this appointment.
After an hour drive to the doctors office, Rex and I arrived at the hospital for our appointment. They did another level 2 ultrasound and this time there was a T.V. screen on the wall in front of me, so I could see what was going on. The lady still wouldn't talk us through anything though...so I was left to make my own assumptions about the gray blobs I was seeing on the screen. Thankfully this one didn't take as long and within about half an hour the Dr. came in to talk to us.
TIME FOR ANSWERS!
We learned that Makenna's CDH was on the right side (only happens about 12-15% of the time) and that some of her bowel and maybe a part of her stomach is through the hole. Her heart has been shifted slightly to the left and has a little fluid around it, but in general it appears in decent shape so far. The doctor seemed more positive in his demeanor this time than he did when he was telling us about it the first time, but isn't a CDH expert and won't be doing the surgery, so we have to wait until we meet with the pediatric surgeon to get a better idea of her prognoses.
Once we were done talking, it was time for the amnio. He disinfected my stomach and then tapped his finger on my stomach so I would know where to expect the needle to be inserted. He then inserted the needle, but it was so skinny I couldn't feel it a bit. It took about 30-40 seconds for him to fill two syringes with amniotic fluid and then he was done! I survived!
Next I had a Rhogam shot because my blood is O-, some blood drawn, and then I had to do a non-stress test for half an hour to be certain Makenna was handling everything well. She was so active during the non-stress test...my stomach was rolling and moving like crazy. It was really fun to watch. Her heart rate was consistently about 140, which is great, and the machine didn't register any contractions....so we both passed! :-)
After being poked and prodded repeatedly for 90 minutes, I decided we should go to Olive Garden, so we did! We had a lovely meal together and I think Makenna appreciated the meal as well. It was nice to be able to breathe a slight sigh of relief that her liver was currently down and the amnio was over. Now to wait for amnio results and for our meeting with Dr. Kays in Gainesville next week!
Tuesday, August 27, 2013
Friday, August 16, 2013
Is this real life?
The first day or two after we learned about her CDH felt as though we were in mourning. It feels weird to say we were mourning the baby that is so actively moving inside of me, but that is the best way I can describe it.
Once you become pregnant (maybe even before) you have this movie in your mind about how everything will play out. Baby comes, baby cries, and everyone cheers. You hold your baby, take pictures with your baby and nurse your baby. The next day you bring your baby home and spend time rocking and bonding with your baby.
Our story will be much different. We most likely won't hear her cry at birth (due to limited lungs) and immediately after she is delivered she will be put on a ventilator and taken to the NICU. I might get to glance at her, but the first cuddle won't come for weeks. In fact, it could be days before we even get to touch her. She will most likely be the sickest baby in the entire NICU for several weeks and we will have to watch her sleep alone with tubes coming out every which way from her body. Worst of all we will have to leave the hospital without her each night and go back to a hotel for weeks or months. She won't get to wear the clothes we purchased for her or sleep in her beautiful crib, at least not right away. We won't get to take adorable "newborn" pictures and I won't be able to nurse her. Everyday for weeks or months she will be fighting for her life and we will be on a rollercoaster of ups and downs watching her every step of the way....5 hours from our home and the majority of our family. Thinking about all of this it isn't surprising that we went through a mourning phase. We were mourning the loss of the reality we have watched all of our friends experience. It definitely took us a couple of days to wrap our heads around our new reality and realize...this is real life.
That being said...
It is important that we stay positive. Just as I said in the beginning with the bleed, I know my baby will survive. She is a strong fighter and has the love, support, and prayers of so many people on her side. Our reality may be different than we envisioned for all of those months, but the reality is, she will be coming home, eventually. She will wear her cute clothes eventually and she will sleep in her crib eventually. It might not be days after birth, but that is okay. All Rex and I really care about is getting her home eventually.
We quickly realized that being stressed out or crying isn't going to change anything. We can't worry our problems away and we can't sit here feeling sorry for ourselves and our situation when there are people out there who would ultimately give anything to have a little girl just like ours. We could sit here and ask ourselves "why us" or say "it isn't fair" but we believe that everything happens for a reason. There is a reason we were given this strong little girl and I wouldn't change anything about her. She is ours and no matter what she will be perfect. This experience will help shape and define who she becomes. It will make her a better person. She will appreciate life and all it has to offer. She will work hard to make the most out of her life because she will realize how precious her life is. It will bond our family because when she gets older she will read this and learn how much we love her and how hard we all fought for her. She is going to be an AMAZING child with a very bright future and I am already proud to call myself her mom.
Once you become pregnant (maybe even before) you have this movie in your mind about how everything will play out. Baby comes, baby cries, and everyone cheers. You hold your baby, take pictures with your baby and nurse your baby. The next day you bring your baby home and spend time rocking and bonding with your baby.
Our story will be much different. We most likely won't hear her cry at birth (due to limited lungs) and immediately after she is delivered she will be put on a ventilator and taken to the NICU. I might get to glance at her, but the first cuddle won't come for weeks. In fact, it could be days before we even get to touch her. She will most likely be the sickest baby in the entire NICU for several weeks and we will have to watch her sleep alone with tubes coming out every which way from her body. Worst of all we will have to leave the hospital without her each night and go back to a hotel for weeks or months. She won't get to wear the clothes we purchased for her or sleep in her beautiful crib, at least not right away. We won't get to take adorable "newborn" pictures and I won't be able to nurse her. Everyday for weeks or months she will be fighting for her life and we will be on a rollercoaster of ups and downs watching her every step of the way....5 hours from our home and the majority of our family. Thinking about all of this it isn't surprising that we went through a mourning phase. We were mourning the loss of the reality we have watched all of our friends experience. It definitely took us a couple of days to wrap our heads around our new reality and realize...this is real life.
That being said...
It is important that we stay positive. Just as I said in the beginning with the bleed, I know my baby will survive. She is a strong fighter and has the love, support, and prayers of so many people on her side. Our reality may be different than we envisioned for all of those months, but the reality is, she will be coming home, eventually. She will wear her cute clothes eventually and she will sleep in her crib eventually. It might not be days after birth, but that is okay. All Rex and I really care about is getting her home eventually.
We quickly realized that being stressed out or crying isn't going to change anything. We can't worry our problems away and we can't sit here feeling sorry for ourselves and our situation when there are people out there who would ultimately give anything to have a little girl just like ours. We could sit here and ask ourselves "why us" or say "it isn't fair" but we believe that everything happens for a reason. There is a reason we were given this strong little girl and I wouldn't change anything about her. She is ours and no matter what she will be perfect. This experience will help shape and define who she becomes. It will make her a better person. She will appreciate life and all it has to offer. She will work hard to make the most out of her life because she will realize how precious her life is. It will bond our family because when she gets older she will read this and learn how much we love her and how hard we all fought for her. She is going to be an AMAZING child with a very bright future and I am already proud to call myself her mom.
Thursday, August 15, 2013
What is CDH?
Once we got home we spent hours upon hours researching congenital diaphragmatic hernias on-line.
It was all so scary, but this is what I learned:
Learning all of this brought up so many questions about Makenna that we can't find on-line....What side is the hernia on? What organs are through her hole? How big is her hole? Where is her liver? What is her chance of survival? How long will she be in the NICU? Is her case serious enough to need ECMO? Does she have a genetic disorder? What is her lung-to-head ratio? What hospital should we go to?
The scary thing about CDH is that even with ultrasounds and other tests, it is hard to answer all of these questions. Every case is totally different. No two are alike. You can have a baby with a 20% chance survive, while a baby with an 85% chance does not...it all depends on millions of different variables that can't be predicted.
We also discovered that CDH is kind of like a puzzle. We will add new pieces as time goes on, but we won't see the full picture until the journey is pretty much over. It isn't until the surgery that they will know exactly how much of a diaphragm she has, but even then it will be several weeks after surgery before we know how she will handle the surgery, and several weeks after that before we know what kind of long-term complications she might have.
It is a waiting game...a very scary waiting game...that will be taken one day at a time for many, many months. That being said, with the help of technology we are hoping to find out as much as we can about Makenna's condition before she gets here.
**On an ironic side note**
Another thing I learned in my research is that CDH has it's own awareness day and ribbon. The ribbon is ironically the exact same shade of turquoise we chose to paint her bedroom...many weeks before we had even heard of CDH. I definitely can't wait to bring her home to her own very special turquoise room!
It was all so scary, but this is what I learned:
- In baby's the diaphragms job is to keep the organs in the lower part of the belly. With CDH there is a hole in the diaphragm that allows the other organs to migrate into the chest cavity. When this happens there isn't enough room for the lungs to develop correctly and the heart can be pushed to the side or impacted as a result.
- It is a very serious defect that happens in about 1 out of every 3000-5000 pregnancies (about as often as cystic fibrosis or spina bifida).
- In general the chance of survival is 50/50, but with the right hospital and right doctor the chance of survival is usually greater.
- It is most common on the left side (85%)
- 40% the time it is associated with other genetic/chromosomal defects/disorders.
- The baby will need surgery once they are stable to fix the hole and relocate the organs.
- The baby will not be able to breath on their own due to the underdeveloped lungs, they will need a ventilator.
- Some baby's (about 50%) need the ECMO machine, which basically makes it so the heart and lungs don't need to do anything---it pulls the blood from the baby's body, oxygenates it, and puts it back ---this is very risky.
- If the liver has not gone through the hole the chance of survival is greater
- The lung-to-head ratio can be used to determine survival if done early enough
- The baby may develop lung-disease, GURDS, or need oxygen and/or a feed tube for months or years after surgery
- Recovery can take between 6 and 24 weeks
Learning all of this brought up so many questions about Makenna that we can't find on-line....What side is the hernia on? What organs are through her hole? How big is her hole? Where is her liver? What is her chance of survival? How long will she be in the NICU? Is her case serious enough to need ECMO? Does she have a genetic disorder? What is her lung-to-head ratio? What hospital should we go to?
The scary thing about CDH is that even with ultrasounds and other tests, it is hard to answer all of these questions. Every case is totally different. No two are alike. You can have a baby with a 20% chance survive, while a baby with an 85% chance does not...it all depends on millions of different variables that can't be predicted.
We also discovered that CDH is kind of like a puzzle. We will add new pieces as time goes on, but we won't see the full picture until the journey is pretty much over. It isn't until the surgery that they will know exactly how much of a diaphragm she has, but even then it will be several weeks after surgery before we know how she will handle the surgery, and several weeks after that before we know what kind of long-term complications she might have.
It is a waiting game...a very scary waiting game...that will be taken one day at a time for many, many months. That being said, with the help of technology we are hoping to find out as much as we can about Makenna's condition before she gets here.
**On an ironic side note**
Another thing I learned in my research is that CDH has it's own awareness day and ribbon. The ribbon is ironically the exact same shade of turquoise we chose to paint her bedroom...many weeks before we had even heard of CDH. I definitely can't wait to bring her home to her own very special turquoise room!
Tuesday, August 13, 2013
A problem with your baby...
On August 13th it was finally time to see the high-risk doctor. We were certain they were going to tell us her cord was fine and send us on our way.
It was a very different kind of appointment. At our doctors office the ultrasound tech is very sweet. She lets us see the screen and takes time to talk us through what she is looking at, she even points things out as she sees them. At this office the tech said from the beginning that her job is to take pictures and that the Dr. will discuss the pictures with us after she is done.
From where I was laying I could not see the screen, all I knew is that it was taking a really long time. 80 minutes (yes 80) went by. I asked if the cord was okay and see said she hadn't gotten to the cord yet. I became nervous and I kept looking at my husband trying to see if he knew what was going on--I could tell he didn't. We came for the cord and after 80 minutes she hasn't even done that yet? It was scary and confusing. Finally they used the transvaginal ultrasound to check the cord, which took about 3 minutes.
When it was over we waited nervously for the doctor to come into the room and tell us what was going on. He sat down, looked over the pictures, and my heart sank. I knew by the look on his face and the way he was rubbing his chin that something was really wrong.
Finally after a few minutes he said "I do see a problem with your baby..." he paused for what felt like hours. My mind immediately went to the worst. He said she had something called Congenital Diaphragmatic Hernia. I had no idea what that meant, but I could tell it wasn't good. He explained briefly what CDH was and that we would need to deliver at a hospital with a level 3 NICU and an ECMO. We wanted to ask questions, but we didn't know enough about CDH to know what to ask. He explained that there was nothing we did to cause it and there is nothing we could have done differently to prevent it...and then he left.
In my mind I was thinking, how did this go undetected until 28 weeks. How had our doctor and ultrasound tech missed this? We had asked about the heart, the brain, even her lip, femur, and feet...but never in a million years did we ever think to ask "How's her diaphragm!"
We left the hospital feeling completely blindsided...but I still thanked God for answering my prayer. After all, I asked him to allow the doctor to see what he needed to see...and he did. I also thanked Makenna for being so smart. If she hadn't of hidden her cord we wouldn't have needed a high-risk ultrasound and the CDH would have gone undiscovered until after she was born.
I still had one big question though....what the heck is CDH?!
It was a very different kind of appointment. At our doctors office the ultrasound tech is very sweet. She lets us see the screen and takes time to talk us through what she is looking at, she even points things out as she sees them. At this office the tech said from the beginning that her job is to take pictures and that the Dr. will discuss the pictures with us after she is done.
From where I was laying I could not see the screen, all I knew is that it was taking a really long time. 80 minutes (yes 80) went by. I asked if the cord was okay and see said she hadn't gotten to the cord yet. I became nervous and I kept looking at my husband trying to see if he knew what was going on--I could tell he didn't. We came for the cord and after 80 minutes she hasn't even done that yet? It was scary and confusing. Finally they used the transvaginal ultrasound to check the cord, which took about 3 minutes.
When it was over we waited nervously for the doctor to come into the room and tell us what was going on. He sat down, looked over the pictures, and my heart sank. I knew by the look on his face and the way he was rubbing his chin that something was really wrong.
Finally after a few minutes he said "I do see a problem with your baby..." he paused for what felt like hours. My mind immediately went to the worst. He said she had something called Congenital Diaphragmatic Hernia. I had no idea what that meant, but I could tell it wasn't good. He explained briefly what CDH was and that we would need to deliver at a hospital with a level 3 NICU and an ECMO. We wanted to ask questions, but we didn't know enough about CDH to know what to ask. He explained that there was nothing we did to cause it and there is nothing we could have done differently to prevent it...and then he left.
In my mind I was thinking, how did this go undetected until 28 weeks. How had our doctor and ultrasound tech missed this? We had asked about the heart, the brain, even her lip, femur, and feet...but never in a million years did we ever think to ask "How's her diaphragm!"
We left the hospital feeling completely blindsided...but I still thanked God for answering my prayer. After all, I asked him to allow the doctor to see what he needed to see...and he did. I also thanked Makenna for being so smart. If she hadn't of hidden her cord we wouldn't have needed a high-risk ultrasound and the CDH would have gone undiscovered until after she was born.
I still had one big question though....what the heck is CDH?!
Tuesday, August 6, 2013
Our smart girl!
On August 6th we went for our routine doctors appointment at 28 weeks. I was particularly excited for this appointment because we would finally get to have another ultrasound! We had so many ultrasounds in the beginning because of the bleed, but once it cleared up we went back to a "normal" schedule...so it had been months since the last one! I really wanted to see her pretty face again!
The ultrasound went well. We asked about her heart and her brain. We asked about all the markers we read on-line for different syndromes (the feet, femur, nose, etc.) and they said everything looked normal. However, Makenna was laying in the transverse position instead of head down. This wasn't a surprise because just looking at my stomach you could literally see a big round bulge on my lower left side (her bottom) and a big round bulge on my right side (her head). She had been camped out in this position for weeks and let me tell you -- it is VERY uncomfortable! Although, aside from being uncomfortable it also made it impossible for the ultrasound tech to see where her cord was inserted. Apparently the placenta is implanted low (normally it is higher and in the middle) and Makenna was hiding it with her body. So even though she was pretty sure everything was fine, she wanted me to see a high-risk doctor anyway just to be sure we wouldn't have vasa previa or cord prolapse during delivery.
We were very thankful to have a doctor that was so thorough, but we became very nervous that something else might be wrong. The cord is a very important part of her body right now. Having it rupture or deliver first could be deadly. Especially at our small town hospital that doesn't have a NICU!
So even though we were pretty confident that everything would be okay, we still couldn't help but worry as we began our week long wait to see the high-risk doctor.
In the meantime I prayed that the doctor would be able to see what he needed to see and that everything would turn out okay in the end.
 |
| 28 weeks! |
The ultrasound went well. We asked about her heart and her brain. We asked about all the markers we read on-line for different syndromes (the feet, femur, nose, etc.) and they said everything looked normal. However, Makenna was laying in the transverse position instead of head down. This wasn't a surprise because just looking at my stomach you could literally see a big round bulge on my lower left side (her bottom) and a big round bulge on my right side (her head). She had been camped out in this position for weeks and let me tell you -- it is VERY uncomfortable! Although, aside from being uncomfortable it also made it impossible for the ultrasound tech to see where her cord was inserted. Apparently the placenta is implanted low (normally it is higher and in the middle) and Makenna was hiding it with her body. So even though she was pretty sure everything was fine, she wanted me to see a high-risk doctor anyway just to be sure we wouldn't have vasa previa or cord prolapse during delivery.
We were very thankful to have a doctor that was so thorough, but we became very nervous that something else might be wrong. The cord is a very important part of her body right now. Having it rupture or deliver first could be deadly. Especially at our small town hospital that doesn't have a NICU!
So even though we were pretty confident that everything would be okay, we still couldn't help but worry as we began our week long wait to see the high-risk doctor.
In the meantime I prayed that the doctor would be able to see what he needed to see and that everything would turn out okay in the end.
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