Goals. Everyone at one point in life will set a goal for themselves or for others. This is how people succeed in what they want would like to accomplish. It is one step at a time taking each day at a time whether it would be losing weight, starting a routine or to better themselves. This has now become my life, setting a goal each day.
Over the last month, we have been moving forward towards my goal of making it first to 32 weeks without any complications. During this time, we celebrated all three of our birthdays, John and I being together for 10 years and Thanksgiving with our families all while Rebecca continued to thrive inside. Little did we know that would change within a day.
On Friday November 27, the day after Thanksgiving we went to my regularly scheduled growth ultrasound. We had our fingers crossed the whole time hoping that her growth continued and we would be released as normal until the next time. Once the sonographer was completed with her scan, she went to talk with the doctor as usual. This time, it took a while for her to come back and when she did, she was not alone. The doctor explained the situation to us with Rebecca's growth issue that even though she is growing she is not growing significantly. She is now less than the 10th percentile. We knew that she would have growth restriction in the first place due to her congenital heart defect since most babies with a heart issue are born smaller but for her case, the size is a big deal. Her size effects the outcome of her surgery and the shunt they would be able to use. Getting her to grow more/go full time is now the main focus of the pregnancy. Due to this, the doctor decided the best course of action would be bed rest for me. There is no proven study to say that bed rest will help increase her size but it is the only way they can think of to help me expand less energy and give her more calories to take in.
I went to work that Monday to get everything situated before I started bed rest and to discuss going on short term disability. I am a very fortunate person that my work has been so understanding and has supported me the whole time. Not many people have that support system at work and I count my blessings for the people I work with. It was very hard for me to stop working even though I knew there was some possibility that this would happen. It is also very hard for me to sit around at home and not lift a finger. Having a 2 year old at home makes the situation more difficult because she does not understand that Mommy can't get up and play with her. We tried to make it work the best we could for her and she was able to get lots of Mommy cuddles on the couch. As the week progressed, I continued my weekly appointments with the non-stress test and biophysical profiles with no issues. We wanted to do something as a family together for Christmas that Annabelle would enjoy so we decided to go to the Lebanon Horse Parade the first weekend in December. We were lucky that John's sister and her family went with us because they helped with Annabelle while I got to sit the whole time. She was so excited for the parade and loved the horses. She would tell them Merry Christmas and wave, let us know when the horses decided to poop and when it was stinky. It was the cutest thing to see. The smile on her face just lights up my world.
Monday December 7th I reached my initial goal of 32 weeks without any complications. I had my regular 2 week OB check up that day along with a growth ultrasound. During the visit the doctor informed me that she had not shown any significant growth and is still measuring less than the 10th percentile. She was measuring around 2 lbs 7 oz which is about 1 kilogram. She stated that I should bring my hospital bag with me next time I come back for growth ultrasound because if she does not show any improvement then I would go into then hospital and be monitored daily.
Two days later, on Wednesday December 9th the unimaginable happens. After being sent home two days earlier, I ended back up at Good Samaritan Hospital but not for a doctor's visit or ultrasound. Around 10 am that day I started experiencing bleeding which is not a good sign. I called the doctor immediately to inform them of the situation and I was told to head start to the OB triage floor. Once I got to the hospital, I was examined, had blood drawn, vital checks, checks on the baby to see what was going on. After all the initial exams, I called John to let him know of the situation along with my family. While I was on the monitor, they noticed I was having pre-term contractions. To help reduce contractions, I was put on magnesium sulfate and given a steroid shot to help mature Rebecca's lungs. I was very scared because I was so not ready for her to come out. Thankfully the magnesium sulfate worked and my contractions started slowing down and my bleeding stopped.
Over the next couple days, I was monitored around the clock and was stepped down from the labor and delivery floor to the high risk OB floor. I was so thankful to change rooms. It meant that Rebecca would be staying in longer, the bad news, since I bled it means a mandatory 7 days in the hospital from the first day of no bleeding. Still to this day, there is no definitive answer as to why I started to bleed but they think I had a slight placenta abruption that healed itself which would lead to my pre-term contractions. It will remain a mystery but what I do know is the earliest I could potentially be released is on December 17th as long as no new bleeding occurs or so I thought.
Over the weekend, my health started to decline. The doctor ordered pre-eclampsia labs. Turns out I have a mild case of pre-eclampsia on top of everything else. Now this makes life more difficult. I will continue on my current path of monitoring but now I will have to have blood drawn 2x a week to make sure my condition does not worsen. This could also mean that my hospital stay could be extended since my health is now in question along with Rebecca's. The doctor's say I am in such a gray area that they can not give me a firm answer as to what they want to do. There are so many factors to consider that the best course is not clearly defined. It is a pins and needles kind of game we are playing. Rebecca needs to stay in as long as possible to have the best outcome with surgery but how my body will handle her staying in has become the challenge.
An even bigger challenge now has come into play. We met with the cardiothoracic surgeon at Cincinnati Children's this past week along with having another fetal echo. We finally have an answer to the weight requirement for Rebecca. They would like her to be at least 3 kilograms (approximately 6.9 lbs) for the best possible outcome and least amount of complications. The reason for this is that the smallest shunt they have is 3 mm and the size of the shunt correlates to the weight. If the shunt is too large, then there would be too much blood flow going into the heart which could cause he to go into cardiac failure and not take the shunt. We really need her to have a major growth spurt in other words. They of course said they would do everything possible no matter her weight. This does give us some relief but not enough due to complications that can arise.
After our meeting with the surgeon, we went to our scheduled fetal echo. What was to come from the result is something we were not prepared to here. This echo lasted much longer than the others and was more detailed. When the doctor came in to discuss the results we were in shock as to what she said and was not prepared. The scan is showing another abnormality with Rebecca's heart. The problem with this abnormality is that they can not know for sure since the scan can only provide so much information. She informed us that Rebecca's right side artery may not be functioning at optimal level or at all. The only way to tell for sure is to have her go through a cath lab. If it turns out that her arteries are normal on her right side we will proceed with the initial plan of the three surgeries. If it turns out there is issues with the arteries, then we have a huge problem and the arteries will not be fixable and it means we can proceed only with the first surgery. This will give her approximately 4-6 months to live on the first surgery as long as she does not have any complications. In the meantime, she would have to be placed on the heart transplant list and we would be waiting for for a teeny tiny heart to become available. To add to the matter, there is also a weight requirement for a transplant that we are waiting to here about so she could potentially not qualify right off the bat due to her size. It was the most gut wrenching news I have ever heard in my life. To know you are carrying a life and not be able to do anything to help her is indescribable. Needless to say my goals for this pregnancy has changed dramatically.
Before my goal was to make it to 32 weeks with being pregnant. I have now made it to 33 weeks. My goal now is to take each day and stay pregnant. I can only take it one day at a time. Each day that I wake up pregnant and each day I go to bed pregnant I meet my goal. People keep asking me how I am handling everything and if I am doing ok. Honestly to tell the truth, no I am not doing ok. What normal person would be. I am just choosing not to dwell on it. I am focusing on Rebecca and my health as that is all I can do at the current moment. I am focusing on the little things. I am not looking towards her birth and trying to make those decisions now and worrying myself with them. Who knows if this is a healthy way to deal with feelings but for now it is getting me through my day and it is working.
Rebecca is thriving and continues to impress me everyday. She is such a fighter and is a wonder to us all as to how she is handling all this. She is my superhero and my inspiration.
Monday, December 14, 2015
Wednesday, November 11, 2015
The Weeks looking back
These past weeks have been really rough. We have been on a whirlwind of doctor's appointments and opinions on the best route for us. Ever since we have found out about our daughter's heart condition, I feel like we have been living on a cloud. Our feet, since that day have not touched the ground and we can't get ahead or catch a break.
In the following weeks, the Perinatologist recommended that we do genetic testing to rule out any other issues that we could potentially run into. We could either do an amniocentesis or do a blood draw. Due to the high risk of an amnio, we decided a blood test would be the best and if something more needed to be done, then we would reconsider the amnio.
At the beginning of October, I went for the blood genetic testing, We patiently waited on our results. We did not expect anything out of the normal to show up, but with the way our days have been going of course the test found something. The blood test came back showing signs of Trisomy 16. If you are not familiar with genetics, I will be giving a brief explanation of what this is.
Humans a total of 46 chromosomes. Each person is given 23 chromosomes from Mom and 23 chromosomes from Dad which gives you 23 pairs of chromosomes. When one of those pairs has an extra strand, then that is what is known as trisomy (three copies of chromosomes instead of two). Each chromosome has a reference number 1 - 23 which will give rise to different birth defects. There are three major chromosomes that are widely checked, 13 (Patau's syndrome), 18 (Edward's syndrome) and 21 (down syndrome). Most people are familiar with Trisomy 21 due to it being known as down's syndrome. Trisomy 16 is not very well known or have had a lot of studies. Not many people have been diagnosed with this genetic condition. The reason, full trisomy 16 is not compatible with life. From what was explained to me, most miscarriages are due to trisomy 16 and the baby will not live past the first trimester. The doctor ruled this likelihood out since we were well into our second trimester and she is doing very well except for the CHD. The Perinatologist provided us with two instances why this was flagged on our blood draw. The first is that the baby could have trisomy 16 mosaicism, This would mean the baby has an extra chromosome copy somewhere in the body but does not effect all of the cells. The second option is that it is just confined to the placenta which would effect her growth rate. Her recommendation, amniocentesis.
John and I discussed this in length. Would performing an amniocentesis help us in any way, what risks are we at now with knowing all of her conditions, is it something that we have to know are just some of the questions we were faced with. We decided to see a genetic counselor to help us make this decision. Unfortunately, this did not go as planned. The counselor could not provide us with any more information than what we have already gathered. It is such a rare genetic marker to find late pregnancy, they were shocked to see we were flagged. They also recommended we do an amnio to provide answers. We decided to go ahead and have the amnio because I needed to know what we were going to deal with and if this would complicate her delivery anymore that what it is. On October 23, one month exactly after finding out about her CHD, we had the amnio.
We were informed that the amnio FISH results would be provided within 24-48 hours to come back, the final results would take anywhere between 7 - 14 days to receive back.. We received a phone call the next day with the FISH results, the initial results were positive. No genetic flags showed up, meaning she did not have full trisomy 16, 18, 21 or 13. We were ecstatic to hear this but we already knew she did not have full trisomy 16 but we counted our blessings because that meant she did not have any of the others as well.
We patiently waited for the final results. I was on edge the whole time while waiting. I had more patience though than others who were constantly asking me for the final results. I do understand that people are praying for us and want to be kept in the loop with everything but to add more pressure and anxiety to this situation is not helpful and not what I needed on top of everything else. I was accused of being inconsiderate for not giving out results right away and making people wait. If that is how people want to perceive me than I will let them. This is something for my husband and I to have time to adjust to either the good or bad news. We needed time to ourselves first before sharing. People were checking in almost everyday since we had the procedure done and it just added so much more stress to an already stressful situation. People did not understand that it could take up to 14 days to here back plus to add in time for us to adjust to what news there was. Finally the wait was over.
I received the best birthday present last week. On Wednesday, November 4th, the final results were in and we have a genetically normal baby girl! We were elated to get the news. I was tearing up when the doctor told me over the phone just because of everything that was bottled up emotionally on the inside and getting news that was good for once. I went ahead and shared this information with our immediate family so that they would know. I could not contain my happiness. That quickly faded as I was informed also that I had failed my 1 hour glucose test and I would need to have the 3 hour testing. What more could be thrown at me.
All the while I am continuing getting my weekly ultrasounds of fluid/doppler scans weekly and growth/fluid/doppler scans bi-weekly. Each week I go in and each week I am cleared to go home and she is clear to stay in utero. I am very blessed each week this happens because it helps her grow more on the inside and keeps her protected. This past Friday, the ultrasound tech surprised me and did a quick 3D ultrasound to get a profile view of our little Rebecca. She already reminds me of her older sister, Annabelle. This was very thoughtful and I am very appreciative of the tech for doing this.
Rebecca continues to thrive for the time being on the inside. We have not had any scares from the ultrasound and will continue to go weekly to watch her and any signs of distress. I also met with my new doctor this week and she suggested that I have a bag packed and a plan in case I need to be monitored more closely whether that means in hospital or living closer to Good Samaritan hospital in Cincy. As I am supposed to be enjoying my last few months of pregnancy, I am planning for a hospital stay/early delivery as a precaution. If that is what is needed to help Rebecca, then that is what I will do. My only hope is that Annabelle will understand later in life and that I will not blame myself for missing out on her every day adventures. I feel like I am already missing so much just because of all the appointments/monitoring that have been going on to my blood pressure and swelling and trying to keep that under control.
This month and a half has literally been a roller coaster and I have some good days and I have some really bad days but that is to be expected. I am allowed to have those bad days and I am allowed to be sad. It is not an easy process and there is no instruction manual in life for what we are going though nor will there be one once Rebecca makes her debut. We can only hope and pray that each decision we make is the right one not only for her but for us as a family.
In the following weeks, the Perinatologist recommended that we do genetic testing to rule out any other issues that we could potentially run into. We could either do an amniocentesis or do a blood draw. Due to the high risk of an amnio, we decided a blood test would be the best and if something more needed to be done, then we would reconsider the amnio.
At the beginning of October, I went for the blood genetic testing, We patiently waited on our results. We did not expect anything out of the normal to show up, but with the way our days have been going of course the test found something. The blood test came back showing signs of Trisomy 16. If you are not familiar with genetics, I will be giving a brief explanation of what this is.
Humans a total of 46 chromosomes. Each person is given 23 chromosomes from Mom and 23 chromosomes from Dad which gives you 23 pairs of chromosomes. When one of those pairs has an extra strand, then that is what is known as trisomy (three copies of chromosomes instead of two). Each chromosome has a reference number 1 - 23 which will give rise to different birth defects. There are three major chromosomes that are widely checked, 13 (Patau's syndrome), 18 (Edward's syndrome) and 21 (down syndrome). Most people are familiar with Trisomy 21 due to it being known as down's syndrome. Trisomy 16 is not very well known or have had a lot of studies. Not many people have been diagnosed with this genetic condition. The reason, full trisomy 16 is not compatible with life. From what was explained to me, most miscarriages are due to trisomy 16 and the baby will not live past the first trimester. The doctor ruled this likelihood out since we were well into our second trimester and she is doing very well except for the CHD. The Perinatologist provided us with two instances why this was flagged on our blood draw. The first is that the baby could have trisomy 16 mosaicism, This would mean the baby has an extra chromosome copy somewhere in the body but does not effect all of the cells. The second option is that it is just confined to the placenta which would effect her growth rate. Her recommendation, amniocentesis.
John and I discussed this in length. Would performing an amniocentesis help us in any way, what risks are we at now with knowing all of her conditions, is it something that we have to know are just some of the questions we were faced with. We decided to see a genetic counselor to help us make this decision. Unfortunately, this did not go as planned. The counselor could not provide us with any more information than what we have already gathered. It is such a rare genetic marker to find late pregnancy, they were shocked to see we were flagged. They also recommended we do an amnio to provide answers. We decided to go ahead and have the amnio because I needed to know what we were going to deal with and if this would complicate her delivery anymore that what it is. On October 23, one month exactly after finding out about her CHD, we had the amnio.
We were informed that the amnio FISH results would be provided within 24-48 hours to come back, the final results would take anywhere between 7 - 14 days to receive back.. We received a phone call the next day with the FISH results, the initial results were positive. No genetic flags showed up, meaning she did not have full trisomy 16, 18, 21 or 13. We were ecstatic to hear this but we already knew she did not have full trisomy 16 but we counted our blessings because that meant she did not have any of the others as well.
We patiently waited for the final results. I was on edge the whole time while waiting. I had more patience though than others who were constantly asking me for the final results. I do understand that people are praying for us and want to be kept in the loop with everything but to add more pressure and anxiety to this situation is not helpful and not what I needed on top of everything else. I was accused of being inconsiderate for not giving out results right away and making people wait. If that is how people want to perceive me than I will let them. This is something for my husband and I to have time to adjust to either the good or bad news. We needed time to ourselves first before sharing. People were checking in almost everyday since we had the procedure done and it just added so much more stress to an already stressful situation. People did not understand that it could take up to 14 days to here back plus to add in time for us to adjust to what news there was. Finally the wait was over.
I received the best birthday present last week. On Wednesday, November 4th, the final results were in and we have a genetically normal baby girl! We were elated to get the news. I was tearing up when the doctor told me over the phone just because of everything that was bottled up emotionally on the inside and getting news that was good for once. I went ahead and shared this information with our immediate family so that they would know. I could not contain my happiness. That quickly faded as I was informed also that I had failed my 1 hour glucose test and I would need to have the 3 hour testing. What more could be thrown at me.
All the while I am continuing getting my weekly ultrasounds of fluid/doppler scans weekly and growth/fluid/doppler scans bi-weekly. Each week I go in and each week I am cleared to go home and she is clear to stay in utero. I am very blessed each week this happens because it helps her grow more on the inside and keeps her protected. This past Friday, the ultrasound tech surprised me and did a quick 3D ultrasound to get a profile view of our little Rebecca. She already reminds me of her older sister, Annabelle. This was very thoughtful and I am very appreciative of the tech for doing this.
Rebecca continues to thrive for the time being on the inside. We have not had any scares from the ultrasound and will continue to go weekly to watch her and any signs of distress. I also met with my new doctor this week and she suggested that I have a bag packed and a plan in case I need to be monitored more closely whether that means in hospital or living closer to Good Samaritan hospital in Cincy. As I am supposed to be enjoying my last few months of pregnancy, I am planning for a hospital stay/early delivery as a precaution. If that is what is needed to help Rebecca, then that is what I will do. My only hope is that Annabelle will understand later in life and that I will not blame myself for missing out on her every day adventures. I feel like I am already missing so much just because of all the appointments/monitoring that have been going on to my blood pressure and swelling and trying to keep that under control.
This month and a half has literally been a roller coaster and I have some good days and I have some really bad days but that is to be expected. I am allowed to have those bad days and I am allowed to be sad. It is not an easy process and there is no instruction manual in life for what we are going though nor will there be one once Rebecca makes her debut. We can only hope and pray that each decision we make is the right one not only for her but for us as a family.
Friday, October 23, 2015
The Day that Changed Everyting
September 23, the day our world turned upside down. This day I will never forget. The day the outcome of our pregnancy journey changed.
Wednesday, September 23, we woke at our normal time and proceeded to go about our routine in the morning with getting ourselves and Annabelle ready. We had our perinatal ultrasound appointment at 8:30 am. This was not an exciting time but rather I was anxious. We dropped off Annabelle at daycare and proceeded to the hospital for our appointment.
This was not my first time at the Perinatologist. I had weekly ultrasound appointments there with Annabelle later in pregnancy for her growth restriction and not being able to feel her kick. Even though I have been here before, I was still extremely on edge and my blood pressure reflected that. The nurses asked if my blood pressure was always that high and I responded with no I am just nervous. They took the rest of my vitals and I went back out to the waiting room to be called back.
We were called back by the sonographer, Nervously I walked back to the room. I couldn't even tell you what her name was because the day was such a blur. She proceeded to get all the vital information the doctor would need and we saw on the screen the baby was still measuring 2 weeks behind. She finished up with her scans and left to show the doctor the results.
21 week ultrasound picture
We waited patiently for the doctor to come in. I couldn't contain my nerves. I sat there nervously watching the door waiting for her to walk through. My eyes were focused on that door and wanting to see her reaction as she came through. All the sudden the door opens and she walks in. Her face. I could tell by her face. This was something serious. She proceeded to tell us about the babies weight and that she was concerned with how small she was. Then, the news came. She found an issue with the babies heart. She told us it was either pulmonary atresia or pulmonary stenosis but she was leaning towards pulmonary atresia. To confirm her suspicions, she sent us to Cincinnati Children's cardiology for a more in-depth scan.
At Children's, my mom and dad met us there for support. We were both scared and did not know what to expect. The sonographer called us back to get started. It was an in-depth look at the heat called a fetal echocardiogram. When she finished up, the doctor reviewed the sans and came in with a bunch of information. I am glad my parents were there for the support when she told us the news.
Our baby had not only pulmonary atresia, but also a smaller right ventricle and tricuspid valve. This is known as hypo-plastic right heart syndrome (pictured below). This means the baby will be born with half a functioning heart, only the left side. A single ventricle heart instead of a double. My heart sank as I heard this news. I didn't know how to handle the news, neither did John.
The doctor further explained to us that our baby girl would have to undergo 3 open heart surgeries and the first one within the first week of her life. We were devastated to say the least. How can we do this, how could this have happened, why did this happen, what did I do wrong were all the questions I kept asking myself during this time. It is even more strange when there is no family history with a heart condition in either side of the families.
We both missed work on Thursday from the emotional roller coaster and news we just received. We tried to go in on Friday but both of us ended up going home early. We spent the weekend trying to wrap our mind around this news and sharing it with our families. Everyone was in shock when we told them. It is a very hard concept to wrap your mind around. I am still not completely there to say the least. It is something I struggle with everyday. Each day I take with a stride and get very emotional when discussing our situation with others. We don't know what kind of outcome she will have or how healthy she will be due to this congenital heart defect and IUGR. The cardiologist recommended a follow up fetal echocardiogram in 4 weeks to check on the progress.
Meanwhile, my OB and Perinatalogist recommended the best course of action was for me to transfer my care to a Maternal-Fetal medicine doctor (extremely high risk doctor) in Cincinnati so the baby will be easily transported to Cincinnati Children's immediately after delivery. I will not get to hold my baby girl when she is born nor get to see her until after my c-section is over. This is a hard pill to swallow. I will not be in the same hospital as my child and will be away from her not by her side for at least 2 days.
I will now receive weekly ultrasounds to keep an eye on our daughter to make sure she is still growing and the flow of blood in the umbilical cord is moving forward. If something looks off, then our situation will be re-evaluated. All this news in one day was just overwhelming and this was 1 month ago to the day we learned of our daughter's defect. Our lives have now changed. We will be having a daughter with a disability.
Wednesday, September 23, we woke at our normal time and proceeded to go about our routine in the morning with getting ourselves and Annabelle ready. We had our perinatal ultrasound appointment at 8:30 am. This was not an exciting time but rather I was anxious. We dropped off Annabelle at daycare and proceeded to the hospital for our appointment.
This was not my first time at the Perinatologist. I had weekly ultrasound appointments there with Annabelle later in pregnancy for her growth restriction and not being able to feel her kick. Even though I have been here before, I was still extremely on edge and my blood pressure reflected that. The nurses asked if my blood pressure was always that high and I responded with no I am just nervous. They took the rest of my vitals and I went back out to the waiting room to be called back.
We were called back by the sonographer, Nervously I walked back to the room. I couldn't even tell you what her name was because the day was such a blur. She proceeded to get all the vital information the doctor would need and we saw on the screen the baby was still measuring 2 weeks behind. She finished up with her scans and left to show the doctor the results.
We waited patiently for the doctor to come in. I couldn't contain my nerves. I sat there nervously watching the door waiting for her to walk through. My eyes were focused on that door and wanting to see her reaction as she came through. All the sudden the door opens and she walks in. Her face. I could tell by her face. This was something serious. She proceeded to tell us about the babies weight and that she was concerned with how small she was. Then, the news came. She found an issue with the babies heart. She told us it was either pulmonary atresia or pulmonary stenosis but she was leaning towards pulmonary atresia. To confirm her suspicions, she sent us to Cincinnati Children's cardiology for a more in-depth scan.
At Children's, my mom and dad met us there for support. We were both scared and did not know what to expect. The sonographer called us back to get started. It was an in-depth look at the heat called a fetal echocardiogram. When she finished up, the doctor reviewed the sans and came in with a bunch of information. I am glad my parents were there for the support when she told us the news.
Our baby had not only pulmonary atresia, but also a smaller right ventricle and tricuspid valve. This is known as hypo-plastic right heart syndrome (pictured below). This means the baby will be born with half a functioning heart, only the left side. A single ventricle heart instead of a double. My heart sank as I heard this news. I didn't know how to handle the news, neither did John.
The doctor further explained to us that our baby girl would have to undergo 3 open heart surgeries and the first one within the first week of her life. We were devastated to say the least. How can we do this, how could this have happened, why did this happen, what did I do wrong were all the questions I kept asking myself during this time. It is even more strange when there is no family history with a heart condition in either side of the families.
We both missed work on Thursday from the emotional roller coaster and news we just received. We tried to go in on Friday but both of us ended up going home early. We spent the weekend trying to wrap our mind around this news and sharing it with our families. Everyone was in shock when we told them. It is a very hard concept to wrap your mind around. I am still not completely there to say the least. It is something I struggle with everyday. Each day I take with a stride and get very emotional when discussing our situation with others. We don't know what kind of outcome she will have or how healthy she will be due to this congenital heart defect and IUGR. The cardiologist recommended a follow up fetal echocardiogram in 4 weeks to check on the progress.
Meanwhile, my OB and Perinatalogist recommended the best course of action was for me to transfer my care to a Maternal-Fetal medicine doctor (extremely high risk doctor) in Cincinnati so the baby will be easily transported to Cincinnati Children's immediately after delivery. I will not get to hold my baby girl when she is born nor get to see her until after my c-section is over. This is a hard pill to swallow. I will not be in the same hospital as my child and will be away from her not by her side for at least 2 days.
I will now receive weekly ultrasounds to keep an eye on our daughter to make sure she is still growing and the flow of blood in the umbilical cord is moving forward. If something looks off, then our situation will be re-evaluated. All this news in one day was just overwhelming and this was 1 month ago to the day we learned of our daughter's defect. Our lives have now changed. We will be having a daughter with a disability.
Monday, October 19, 2015
The Big Day
Monday September 14, the day we got to catch a glimpse of our little one and found out if we were having a boy or girl. We woke up so excited for this day and could not contain our joy. We dropped Annabelle off at daycare and went to Bob Evan's for breakfast. At breakfast we discussed if and how we wanted to find out. To that point we had not made a decision. While eating, we decided that we did want to know the gender this time unlike Annabelle where we waited until she was born to be surprised. Now how to find out and were we going to share what we learned with anyone. John and I thought about this and decided to find out at the ultrasound and we would tell our families later on at a gender reveal party.
We finished eating breakfast and headed to the doctor's office. We waited patiently to be called back to see our little one. The time came and we eagerly went back to the ultrasound room. The technician asked if we were finding out the gender today and we said yes. She started off very quickly and we saw all of the heartbeat, feet, hands, arms, legs, spine, organs, brain, and got a good profile picture. Below is a picture of our little one.
The technician continued on with the ultrasound going through getting all the measurements/scans she needed for the doctor. In the process she got a quick glimpse as to what we were having before the baby moved and found out it's a girl!! We were so happy to hear we were having another girl because it did not matter to us what we were having as long as she was healthy. She quickly told us this without getting a It's a girl picture. I was bummed when we didn't receive one but she was moving too quickly for her to get a snapshot. As she was getting all the measurements the technician asked about my due date and when I had my first ultrasound. I told her that we actually had two ultrasounds, one at 7 weeks and another at 8 weeks. She said those would be the most accurate to give an appropriate due date and continued on. I noticed with all the measurements that the baby was measuring 2 weeks behind which is not good. The technician finished up and escorted us back out to the waiting room. John left to go into work since we already saw the baby and he had a meeting to get to. I thought it was going to be a quick in and out with the doctor.
I was called back to meet with the doctor and my unsettling fears became true. She came in with a look on her face and had me wishing John was still here. She gave me the news that the baby was 2 weeks behind which is something that I noticed myself. Annabelle was also measuring small but she was not that far behind so I knew this was serious. She then walked over to me and placed her hand on my shoulder to prepare me for the news. The doctor then told me that she did not had the best look at the baby's heart. She said that there was some features of the heart that she could not tell if they were there or not and she did not know if this was causing the growth restriction in the baby or if it was unrelated. She didn't know if the size of the baby was causing us not to see what she needed to see. The doctor recommended me to see a Perinatologist (high risk OB) for another ultrasound within the next couple of weeks.
I left that appointment in total disarray. I was angry, sad and confused. The first thing I did was call John and told him the news. I don't know what was going through his head when he received the news but I couldn't stop crying. He kept telling me that all was going to be ok and we have to stay positive. My mom and sister Bobbie kept telling me to stay positive and that everything is going to be ok and the baby will be fine. I knew after what I went through in the first trimester that something was not right and my gut feeling was correct.
We finished eating breakfast and headed to the doctor's office. We waited patiently to be called back to see our little one. The time came and we eagerly went back to the ultrasound room. The technician asked if we were finding out the gender today and we said yes. She started off very quickly and we saw all of the heartbeat, feet, hands, arms, legs, spine, organs, brain, and got a good profile picture. Below is a picture of our little one.
Definitely a difference between bellies. Very small this time around.
The technician continued on with the ultrasound going through getting all the measurements/scans she needed for the doctor. In the process she got a quick glimpse as to what we were having before the baby moved and found out it's a girl!! We were so happy to hear we were having another girl because it did not matter to us what we were having as long as she was healthy. She quickly told us this without getting a It's a girl picture. I was bummed when we didn't receive one but she was moving too quickly for her to get a snapshot. As she was getting all the measurements the technician asked about my due date and when I had my first ultrasound. I told her that we actually had two ultrasounds, one at 7 weeks and another at 8 weeks. She said those would be the most accurate to give an appropriate due date and continued on. I noticed with all the measurements that the baby was measuring 2 weeks behind which is not good. The technician finished up and escorted us back out to the waiting room. John left to go into work since we already saw the baby and he had a meeting to get to. I thought it was going to be a quick in and out with the doctor.
I was called back to meet with the doctor and my unsettling fears became true. She came in with a look on her face and had me wishing John was still here. She gave me the news that the baby was 2 weeks behind which is something that I noticed myself. Annabelle was also measuring small but she was not that far behind so I knew this was serious. She then walked over to me and placed her hand on my shoulder to prepare me for the news. The doctor then told me that she did not had the best look at the baby's heart. She said that there was some features of the heart that she could not tell if they were there or not and she did not know if this was causing the growth restriction in the baby or if it was unrelated. She didn't know if the size of the baby was causing us not to see what she needed to see. The doctor recommended me to see a Perinatologist (high risk OB) for another ultrasound within the next couple of weeks.
I left that appointment in total disarray. I was angry, sad and confused. The first thing I did was call John and told him the news. I don't know what was going through his head when he received the news but I couldn't stop crying. He kept telling me that all was going to be ok and we have to stay positive. My mom and sister Bobbie kept telling me to stay positive and that everything is going to be ok and the baby will be fine. I knew after what I went through in the first trimester that something was not right and my gut feeling was correct.
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