So on June 6, we headed to UW for our first appt. We were nervous and didn't really know what to expect, but we were hopeful that we would get our questions answered. We started out with an appt. with a Genetic Counselor, which is normal when a baby has a birth defect. She told us what we already knew, that Gastroschisis is not a genetic disorder, and it is a rare occurrence which isn't known to have a cause. She also went over our family tree and medical history.
Next up was the in depth ultrasound. Our doctor had told us that UW has the best ultrasound technology, which made us feel more confident that we were getting the best care possible. Our ultrasound lasted about an hour, and our ultrasound tech was absolutely great. She didn't skirt around the reason we were getting an ultrasound, she was very upfront about what she was doing and looking for, which I really appreciated. She told us that we were only the 3rd people to have this particular ultrasound done, which focused on taking lots of measurements of the baby's tummy and bowels. She also was able to see and hear the blood flow throughout the baby's body including through the bowels, which is important because if there isn't proper blood flow, the bowels to die.
After the ultrasound, we met with the Perintologist, who went over what Gastroschisis is and what to expect for delivery and after birth...So I have to deliver at UW, and I will need to be induced at 35-37 weeks due to an increased risk of stillbirth in baby's with Gastroschisis. It isn't necessary for me to have a C-section. The doctor explained that there is no increased risk to the baby or I with a vaginal delivery. I was happy to hear this because I didn't want to deal with the recovery time that a C-section would require. After delivery, the baby will be put in to a silo, which is a sterile sack that will cover the lower portion of her body and will keep the bowels clean and sterile. The baby will then be transported to Children's Hospital, which is a couple miles down the road, to be evaluated. They won't know until she gets here if she will require surgery right away or not. But we can expect her to be in the NICU at Children's for 6-12 weeks. Baby's with Gastro are normally on the small side, and then add in inducing 4 weeks early...we are expecting her to be pretty small.
We aren't sure yet of what the housing situation will be after I get discharged from UW. I know there is housing available, but I don't know if or how we qualify for it. That is something we will learn when we meet with Children's. It's going to be a long road, but in the end we hope to be taking home a perfectly healthy baby girl.
Our next appt. will be a Children's Hospital on July 5. We will have another ultrasound, meet with a pediatric surgeon and meet with the program director of the Prenatal Diagnosis and Treatment Program at Children's.
Wednesday, June 15, 2011
Monday, June 13, 2011
Ultrasound: 5/31/11...It's a girl!
Finally it was the day for our ultrasound. Hailey had preschool that day so it worked out nicely. We were both really nervous, but also trying to stay positive about the whole situation. I tried to imagine how things our lives would change if we did have a child with a debilitating disability, then I felt guilty for feeling this way. I just went through so many strange and uncomfortable thoughts that I think only happen in situations like this.
Our ultrasound tech told us that she was going to do a thorough check of the baby from head to toe and capture images for the doctor to look over. She told us that the doctor would go over them with us. I know that the ultrasound tech's aren't allowed to tell you if something is wrong, but I was hoping she would tell us that everything looked great during our hour long session. She didn't. I tried analyzing everything she was doing and her facial expressions, but she didn't really give out any cues. I found myself throughout the ultrasound wiping away tears because I think I just knew something wasn't right. She seemed to be focusing a lot around the heart and capturing a bunch of picture of that area, but she wasn't saying a whole lot. That was a huge red flag for me.
However on a positive note before I continue, it was during this ultrasound that we found out that we were having another girl! I was so excited because I really wanted two little girls who could grow up with an amazing friendship.
After the ultrasound, we waited in the exam from for about 30 minutes while the doctor looked over the ultrasound images. Another red flag. When he finally came in, he told us to follow him in to another room. Red flag. He took us in to a room with a computer screen filled with our ultrasound pictures and movies. He started by explaining a little about what AFP levels are and what they are an indication of. I wasn't really listening and was already starting to cry. He said that our daughter didn't have Spina Bifida. Thank God. But she does have a birth defect called Gastroschisis. More tears. He went on to explain that Gastroschisis is when the bowels are on the outside of the body. Sobs. He told us that it isn't known what causes this defect, so it was nothing we did wrong, and it occurs in women under the age of 30. I'm 29. He told us that the baby would need to be delivered at UW, and she would have to stay there for awhile after birth, and that she may require surgery. Hearing all this was just too much. Even though he also explained that this defect is not normally life threatening, I couldn't get my head around any of it. He asked if we had questions, and I couldn't think straight, neither could Jeff. What is there to say? We felt like we had been hit by a truck. He drew us a picture so we could understand a little better, but I wasn't grasping it. I was hearing birth defect, surgery, UW, organs outside of body...
Our doctor brought in a nurse to explain what would happen next. She would refer us to UW and they would call in the next few days to set up an appointment. Okay, now what? More waiting. On the way home from the appt. I called my parents who were vacationing in Italy. It was probably midnight their time, and thankfully my dad answered the phone. I'm not even sure if he knew what I was saying because I was crying so much, he woke up my mom and put her on the phone. Somehow she was able to make out what I was saying and reassured me that everything would be okay. When we got home, I crawled in to our bed and just cried. I felt so helpless knowing that something was wrong with our baby and there was absolutely nothing we could do about it, but wait. It was an awful moment.
I had to return to work the next day, and I knew that I wasn't ready but I didn't want to use a sick day because I felt like I needed to save them all up for when the baby comes. I should have called in sick because I must have cried a handful times, in private. It was awful.
When I got home, I did some research on Gastroschisis and I started to feel a tiny bit better. It really helped talking to Jeff, our families and close friends. It's always nice to hear reassuring words from the people you love.
UW called us 2 days later and set up an appt. for June 7. They told us we would meet with a Genetic counselor, have an in-depth ultrasound and then meet with a Perinatologist, which we learned is a doctor that cares for the mother and baby in a high risk pregnancy.
More waiting, but things were getting easier with each day. It was easier to talk about what we were going through without crying and I was able to see the big picture in that finding out our daughter has Gastroschisis was better then finding out she has Spina Bifida.
Our ultrasound tech told us that she was going to do a thorough check of the baby from head to toe and capture images for the doctor to look over. She told us that the doctor would go over them with us. I know that the ultrasound tech's aren't allowed to tell you if something is wrong, but I was hoping she would tell us that everything looked great during our hour long session. She didn't. I tried analyzing everything she was doing and her facial expressions, but she didn't really give out any cues. I found myself throughout the ultrasound wiping away tears because I think I just knew something wasn't right. She seemed to be focusing a lot around the heart and capturing a bunch of picture of that area, but she wasn't saying a whole lot. That was a huge red flag for me.
However on a positive note before I continue, it was during this ultrasound that we found out that we were having another girl! I was so excited because I really wanted two little girls who could grow up with an amazing friendship.
After the ultrasound, we waited in the exam from for about 30 minutes while the doctor looked over the ultrasound images. Another red flag. When he finally came in, he told us to follow him in to another room. Red flag. He took us in to a room with a computer screen filled with our ultrasound pictures and movies. He started by explaining a little about what AFP levels are and what they are an indication of. I wasn't really listening and was already starting to cry. He said that our daughter didn't have Spina Bifida. Thank God. But she does have a birth defect called Gastroschisis. More tears. He went on to explain that Gastroschisis is when the bowels are on the outside of the body. Sobs. He told us that it isn't known what causes this defect, so it was nothing we did wrong, and it occurs in women under the age of 30. I'm 29. He told us that the baby would need to be delivered at UW, and she would have to stay there for awhile after birth, and that she may require surgery. Hearing all this was just too much. Even though he also explained that this defect is not normally life threatening, I couldn't get my head around any of it. He asked if we had questions, and I couldn't think straight, neither could Jeff. What is there to say? We felt like we had been hit by a truck. He drew us a picture so we could understand a little better, but I wasn't grasping it. I was hearing birth defect, surgery, UW, organs outside of body...
Our doctor brought in a nurse to explain what would happen next. She would refer us to UW and they would call in the next few days to set up an appointment. Okay, now what? More waiting. On the way home from the appt. I called my parents who were vacationing in Italy. It was probably midnight their time, and thankfully my dad answered the phone. I'm not even sure if he knew what I was saying because I was crying so much, he woke up my mom and put her on the phone. Somehow she was able to make out what I was saying and reassured me that everything would be okay. When we got home, I crawled in to our bed and just cried. I felt so helpless knowing that something was wrong with our baby and there was absolutely nothing we could do about it, but wait. It was an awful moment.
I had to return to work the next day, and I knew that I wasn't ready but I didn't want to use a sick day because I felt like I needed to save them all up for when the baby comes. I should have called in sick because I must have cried a handful times, in private. It was awful.
When I got home, I did some research on Gastroschisis and I started to feel a tiny bit better. It really helped talking to Jeff, our families and close friends. It's always nice to hear reassuring words from the people you love.
UW called us 2 days later and set up an appt. for June 7. They told us we would meet with a Genetic counselor, have an in-depth ultrasound and then meet with a Perinatologist, which we learned is a doctor that cares for the mother and baby in a high risk pregnancy.
More waiting, but things were getting easier with each day. It was easier to talk about what we were going through without crying and I was able to see the big picture in that finding out our daughter has Gastroschisis was better then finding out she has Spina Bifida.
Where to start...
I keep going back and forth in my head about whether I wanted to blog about this or not, but I decided that I did because it's part of our pregnancy journey that I want to be able to look back on just as we do with our blog posts about waiting for Hailey to arrive. So here goes...
I had a routine 16 week appt. back in May, which happened to be a day before we went on a 2 week vacation. The doctor couldn't see me because he was delivering a baby, so I left to get a routine blood test. The next day, while enjoying a sunny day on the beach at Deception Pass, I got a phone call from my doctor regarding the results of my blood test. I was immediately concerned because the doctor himself was calling and not the nurse who normally calls. He said that my AFP levels were unusually high, which was concerning because it could indicate there is a neural tube disorder, such as Spina Bifida. My heart sank. He said the only way to find out more was to do an ultrasound. So I tried to schedule an ultrasound as soon as I could, but with our upcoming trip to Winthrop we couldn't make something work before we left, so we had to wait our entire vacation (15 freaking days) until we could get in. I even tried to get one for that day knowing that we would have to pack up everything, but there wasn't an opening.
After hanging up with the doctor, I told Jeff what was going on, and immediately called my mom to figure out exactly what this all meant. Of course I'm crying and assuming the worst because it's just what I do. She didn't know too much about AFP levels but she said she would Google it and see what she could find. At the same time, Jeff called his sister, who works in the medical field, to see what she knew. Thankfully, Hailey was running around playing the entire time, not knowing that anything was going on. So my mom calls back and says that from what she found on the internet, 90% of women whose AFP levels are found to be high, end up having healthy babies. This made me breath a little easier, but Jeff and I were still shaken up, and we couldn't help but worry...I told myself that I wouldn't Google it while we were camping which I did, until I realized that there is WAY too much negative information out there, so I stopped.
We continued on with our camping trip, which was so much fun. We had perfect weather, and enjoyed having the campground all to ourselves. After we got home from camping, my best friend Jen and her son Cal came all the way from Oregon to visit for the weekend! It had been a year since we had seen them, so it was just so great to sit down and have girl talk with my bestie, especially about this baby stuff. After Jen and Cal left, we packed up again and headed over to Winthrop via Highway 2 to meet our friends KC, Jenny and their son Tristen. We had a great week long stay at the cabins at the Sun Mountain Lodge. The kids had a blast playing and the adults had fun catching up. All the while though, I couldn't stop thinking about the ultrasound and I was just anxious to get home so we could find out some more information.
I had a routine 16 week appt. back in May, which happened to be a day before we went on a 2 week vacation. The doctor couldn't see me because he was delivering a baby, so I left to get a routine blood test. The next day, while enjoying a sunny day on the beach at Deception Pass, I got a phone call from my doctor regarding the results of my blood test. I was immediately concerned because the doctor himself was calling and not the nurse who normally calls. He said that my AFP levels were unusually high, which was concerning because it could indicate there is a neural tube disorder, such as Spina Bifida. My heart sank. He said the only way to find out more was to do an ultrasound. So I tried to schedule an ultrasound as soon as I could, but with our upcoming trip to Winthrop we couldn't make something work before we left, so we had to wait our entire vacation (15 freaking days) until we could get in. I even tried to get one for that day knowing that we would have to pack up everything, but there wasn't an opening.
After hanging up with the doctor, I told Jeff what was going on, and immediately called my mom to figure out exactly what this all meant. Of course I'm crying and assuming the worst because it's just what I do. She didn't know too much about AFP levels but she said she would Google it and see what she could find. At the same time, Jeff called his sister, who works in the medical field, to see what she knew. Thankfully, Hailey was running around playing the entire time, not knowing that anything was going on. So my mom calls back and says that from what she found on the internet, 90% of women whose AFP levels are found to be high, end up having healthy babies. This made me breath a little easier, but Jeff and I were still shaken up, and we couldn't help but worry...I told myself that I wouldn't Google it while we were camping which I did, until I realized that there is WAY too much negative information out there, so I stopped.
We continued on with our camping trip, which was so much fun. We had perfect weather, and enjoyed having the campground all to ourselves. After we got home from camping, my best friend Jen and her son Cal came all the way from Oregon to visit for the weekend! It had been a year since we had seen them, so it was just so great to sit down and have girl talk with my bestie, especially about this baby stuff. After Jen and Cal left, we packed up again and headed over to Winthrop via Highway 2 to meet our friends KC, Jenny and their son Tristen. We had a great week long stay at the cabins at the Sun Mountain Lodge. The kids had a blast playing and the adults had fun catching up. All the while though, I couldn't stop thinking about the ultrasound and I was just anxious to get home so we could find out some more information.
Saturday, May 14, 2011
15 weeks
Time is just flying by! We can't wait to find out what we are having...we should find out in the middle of June. So far I'm feeling good, just very tired at the end of the day. We are slowly trying to clear out our den, which will soon be baby Mac #2's room.
Hailey is really excited about being a big sister and asks almost daily if it's a boy or a girl. She changes her mind frequently about which she thinks it is. She did come up with names for the baby. If it's a girl, her name should be '"finger" and if it's a boy, his name should be "girl". Pretty creative if you ask me!! She says she is going to teach the baby to eat food and to walk :-)
Hailey is really excited about being a big sister and asks almost daily if it's a boy or a girl. She changes her mind frequently about which she thinks it is. She did come up with names for the baby. If it's a girl, her name should be '"finger" and if it's a boy, his name should be "girl". Pretty creative if you ask me!! She says she is going to teach the baby to eat food and to walk :-)
Mother's Day
On Mother's Day, I woke up to beautiful flowers and yummy donuts. Jeff was going to make a big breakfast, but we decided to head down to Seattle first thing to see my Grandma. Hailey made me an apron that she covered in her hand prints in all sorts of colors. It is really cute. After a quick visit from my Father in Law, who brought me a beautiful hanging basket, we went to great mimi's house. Hailey had a blast seeing great mimi and her cat. Grandma was excited to learn that we were having another baby (her memory isn't so great), so every couple minutes she acted like it was the first time she was hearing of baby #2. It was funny, but sad at the same time.
After our visit, we went to the zoo, where Jeff found the best parking spot possible!! (His badge #) Surprisingly it wasn't very busy, and it was actually warm enough to just wear a t shirt! Hailey had a lot of fun feeding the Willawong birds, and just running around.
After the zoo, we stopped by to see my parents house for a visit. It was a long day, and Hailey and I were so thankful that Jeff drove so we could both sleep. :-)
After our visit, we went to the zoo, where Jeff found the best parking spot possible!! (His badge #) Surprisingly it wasn't very busy, and it was actually warm enough to just wear a t shirt! Hailey had a lot of fun feeding the Willawong birds, and just running around.
After the zoo, we stopped by to see my parents house for a visit. It was a long day, and Hailey and I were so thankful that Jeff drove so we could both sleep. :-)
Park
Hailey loves going to this playground at Sunnyland Elementary...it's where Jeff went to school, so she likes to say "I want to go to the park where daddy went to when he was a tiny boy." It's pretty darn cute...and they have a ginormous slide that Hailey loves.
Easter
Jeff and I were both off on Easter, which was a treat! When Hailey woke up, we went in to her room, and the first thing she said was "Easter Bunny?" It was really cute :-) She was very excited to find an Easter basket full of treats, and then she got to find all the eggs hidden around the house. That evening we went to Mt Vernon to have Easter dinner with my family. It was a great day...and we still have tons of candy left over.
The day before Easter, I took Hailey to an Easter egg hunt at a retirement center here in Bellingham...it wasn't much of a "hunt" because all the eggs and treats were out in the open, but I think the kids like seeing all the goodies laying out in the open anyway. Hailey got a basket full of treats, including a big chocolate bunny which still hasn't been eaten :)
The day before Easter, I took Hailey to an Easter egg hunt at a retirement center here in Bellingham...it wasn't much of a "hunt" because all the eggs and treats were out in the open, but I think the kids like seeing all the goodies laying out in the open anyway. Hailey got a basket full of treats, including a big chocolate bunny which still hasn't been eaten :)
Thursday, April 28, 2011
"H"
Hailey learned how to draw an "H" last month!! She (and us too) are so excited about it! Now whenever she colors, she draws "H" over and over again. She even drew one in the side of our dirty van with her finger!
Hailey can count to 12, and she knows higher numbers, but can't quite get them in order. She knows her full name, as well as ours. She knows her birthday and that she is going to be 3 in July. She also knows what road we live on and what road her Nana lives on. We are so amazed by her little mind and what she retains. She recently started using the word "stupid" randomly. Not sure where she picked it up, but we are definitely trying to break that.
Hailey can count to 12, and she knows higher numbers, but can't quite get them in order. She knows her full name, as well as ours. She knows her birthday and that she is going to be 3 in July. She also knows what road we live on and what road her Nana lives on. We are so amazed by her little mind and what she retains. She recently started using the word "stupid" randomly. Not sure where she picked it up, but we are definitely trying to break that.
Randoms
There is just too much to catch up, so here are just a few pictures we have taken over the last month.
Baby Mac #2
I am SO behind on posting this, but we are pregnant! Here is a picture on the day we found out, 02/24/11. We are so excited, and can't wait to add to our happy family. Our due date is Nov. 1, 2011.
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