Just a quick update for everyone:
First of all, we want to thank everyone that has been supporting us, praying and fasting for us, and sending us love. We definitely have felt all of that power and really appreciate it! We will be leaving tomorrow (Sunday) for Philadelphia and we are extremely anxious to get out there and get things moving along. Although we have only known about our baby's condition and the potential of surgery for a total of almost 3 weeks, we feel like we have been waiting around forever to get the ball rolling on everything. This has been a great lesson in patience for the both of us. We still feel extremely confident that everything is going to go great, and this is still the right decision for our sweet baby. The thing that I have been struggling with the most is leaving my sweet Noah behind. Although I am confident that I will recovery quickly from the surgery, there is the potential that I will have to stay out there until I deliver, while my little family stays here. The thought of being away from Dante, and especially little Noah, whom I spend all day everyday with, is absolutely killing me. I go into his room every night and pick him and just cry. I am not worried about who is watching him and that we won't be taken care of, I am just going to miss him so incredibly much. He is not only my little pal all day, but he has been my little ray of sunshine throughout this whole experience. No matter what has just happened, or what new information we have just found out, he never ceases to make me smile and remember all of my blessings, and how grateful I am to be a mother, not only to him, but to our new baby boy as well. He will be staying with my sister-in-law and brother for the week that Dante and I are both gone, and then we have a little schedule set up for him to be taken care of during that day while Dante is at work (THANK YOU to all those watching him. He loves each of you and is extremely comfortable with you. I know that he will be in good hands while I am gone... which definitely takes a load of worry and stress off of my shoulders.).
We will fly in to Philadelphia tomorrow afternoon and then come Monday morning we will have to be at the hospital at 7:30. We are expected to be there until about 4 or 5 that evening doing tests and meeting with the large team of doctors involved with the surgery. Needless to say, it is going to be an extremely long day for all of us. However, after Monday we should have a better idea of when surgery is going to be. As of right now I am not on the surgical board. Once I pass all of the evaluations on Monday, we are hoping we can then schedule a surgery date. Since Dante has to leave that Saturday to come back to work and to be with Noah, we are really praying that we can do the surgery before he leaves. My doctor has talked with the surgeons out there and they know how anxious and willing we are to have the surgery done. He also has told me that from what he has seen of the baby, and from all of my blood work, there shouldn't be any reason that I don't pass any of the evaluation of Monday. We are really praying that this is all true and there isn't going to be anything that pops up that might delay or deny us the chance of this amazing surgery. If all goes well we will meet with one of the head doctors on Tuesday and then go from there.
As I mentioned before, we still feel very calm and comforted in our choice to do the surgery.We are asking that people pray and fast that the surgeons will be guided to make the surgery go as well as it can go, that I have a speedy recovery so that I can come home and finish the remainder of my pregnancy here with my family and friends, and that our sweet baby boy is able to stay inside of me as long as possible. They won't let me go over 36 weeks, but my doctor told me he doesn't really expect me to carry him past 32 weeks. I am 110% determined to make it to 36 weeks. July 12th marks 36 weeks for me, and I know through the faith of those praying for us, and by me being completely committed to bed rest until that point, that I can make it.
There is still a lot of unknowns in all of this, but Dante and I know without a doubt that our little boy will be healthy, strong, and will be able to do anything in this life that he wants to do. Please keep us in your thoughts and prayers, and please still be positive about the situation. We cannot wait to meet our little man. We already love him so much. I feel him moving around all of the time, and what a blessing of reassurance that is. We once again are so grateful for all of your support and love, and for everyone that has helped us so far. We still ask that you contact me if you have questions or concerns and don't speculate or assume anything based upon what you might have seen on the internet or with a different person. You won't be bothering us and I would love to fill you in on any other questions you have. I will update everyone after we passed the evaluation and have a surgery date. We love all of you, and we especially our loving Heavenly Father who has helped us each step of the way throughout this process.
Saturday, March 30, 2013
Friday, March 22, 2013
As many of you know, Dante, Noah, and I are very excited to announce that we are having another sweet baby enter our lives this year. I am 20 weeks today, and we could not be more thrilled that we are having another boy!
This pregnancy, however, has definitely been different from the one I had with Noah. We both knew that we were ready to start trying again for another baby and felt like it was the right time in our lives to add on to our family. My cycle had been really irregular after I stopped nursing Noah, so we didn’t even find out we were pregnant until I was about 10.5 weeks along. We had a routine ultrasound and listened to the heart and everything seemed to be perfect. I told Dante that night, for some reason I felt like something was weird about this pregnancy, but figured it had to just be the nerves of being a mom to two kids now. As the weeks passed I started to feel him move around and kick, and we became more anxious to find out what we were having.
On March 11th, we went to visit our doctor and were very excited to see what the gender of our new little bundle of joy would be. We were hoping for a boy, so we were beyond excited when our wish had come true! That excitement quickly disappeared though as the ultrasound tech said that she was seeing some concerning things and needed to go get a doctor for a second opinion. She was only gone for about five minutes, but that felt like the longest five minutes of my life. When the doctor came back in and took a look, to our dismay, he too agreed that there were definitely some concerning images on the ultrasound. He diagnosed our baby with hydrocephalus (water on the brain in the ventricles, which causes the brain to swell), his Cerebellum (the base of the brain) was either really underdeveloped or non-existent, and that he had a Myelomeningocele (an opening in the spinal column, more commonly known as Spina Bifida). We were in complete shock. I remember just bursting into tears, and feeling like the nauseous and like the whole room was spinning. Dante and I were both not really sure how to handle the situation. My doctor set us up with an appointment to meet with a fetal maternal medicine doctor up in Salt Lake City the next day to use a better ultrasound that would be able to give us more exact answers.
Waiting for our 10 am appointment the next day was the most impatient we had even been, neither of us slept at all that night. The ultrasound took about an hour for them to get all of the shots and pictures they needed. I was praying that the doctors the previous day had just misread our ultrasound and that our baby was actually going to be fine, but that was not the case. The confirmed that he did in fact have hydrocephalus, a club left foot, and a myelomeningocele. However, they did find that he did in fact have a cerebellum, but it was just compressed into his skull. We learned that with Spina Bifida, the opening in the spinal column allows cerebral spinal fluid (CSF) to escape out of his back and with time and gravity that begins to pull the spinal column down. The spinal column is attached to the base of the brain, so in a chain reaction the brain is also pulled down, which is why the cerebellum was compressed into the base of the skull and that is why my they couldn’t see his cerebellum the previous day. This causes a block which leads to the CSF build up in the brain ventricles causing the hydrocephalus. The club foot resulted because of the spinal column not forming correctly so the knee, hip, and ankle didn’t form correctly as well. After hearing all of this information we were devastated. What kind of life did this mean for our baby? Is he going to function on his own? Why did this happen? What can we do to help him? Is there anything we can do? Will he walk on his own? Will he make to full term? What will his life expectancy be? I remember the doctor answering a lot of our questions, but I don’t really remember what was said. I felt like the whole appointment had been a blur. She did say, however, that we may be candidates for Fetal surgery to repair the Myelomeningocele (the opening in the spinal column). They did an Amniocentesis (extracted amniotic fluid from me) and sent it to the lab to be tested for any chromosomal or genetic errors, which takes about 10-14 days, and after that we could meet with Dr. Ball, who used to regularly do these surgeries before he moved out to Utah. If the Amnio came back clean, then we would be considered to do the surgery.
After our appointment we were now suppose to wait for almost 2 weeks to hear anything else. I remember thinking that this was going to be the longest 2 weeks of my life. We felt helpless not knowing what else to do for our sweet baby boy or how to help him. When we got home we decided that we needed to go to the temple and really pray about everything that was going on. What we felt and heard after going to the temple was amazing. We both left feeling calm and comforted. We did not know the details of what would happen, but we knew in the end that everything would work out how it was suppose to and that we would be ok. We also felt very strongly that we needed to have the surgery done. Later that week we found out the Dr. Ball would be able to meet with us the following Monday, instead of in 2 weeks like he had thought, and talking with him really helped to calm our nerves. He explained every detail of the surgery and what it would entail now, after I would be after I had the surgery, and how it would affect my later pregnancies. When he saw how willing we were to do the surgery he was extremely helpful at helping us get on board with some of the hospitals that offer the surgery. It is not offered anywhere in Utah, so I will be going to Philadelphia for the surgery. Two days after our appointment with Dr. Ball we got great news, not only had our amnio results come back sooner than we thought, but they came back clean. We have been so relieved that our precious little boy does not have to deal with any genetic or chromosomal issues on top of everything else he is going to have to endure with the Spina Bifida.
This past week in a half has seemed to be the longest week and a half of my life. I feel like it was months ago that we first learned about our sweet boy. As of yesterday, we have committed to going to the Children’s Hospital of Philadelphia (CHOP) to do the surgery, and are scheduled to be there the 1st and 2nd of April for 2 days of evaluations, which include a fetal echocardiogram, fetal MRI, blood work, meeting the entire 8 doctor team involved with the surgery, talking to social workers and counselors, and then seeing if we are still interested in proceeding. If we pass the evaluation, then we will be able to schedule the surgery for the next day or two. We are really praying that the evaluations of everything come back clean and that we can perform the surgery, otherwise we will be sent home and will just have to wait until he is born to do the surgery on him outside of the womb.
What the surgery entails is cutting into my uterus to get to the myelomeningocele on our baby and then a neurosurgeon will close the neural tube defect and surrounding layers in the spinal column. The baby is not removed from me during the surgery and they try to expose him to the outside world as little as possible. By closing the myelomeningocele up, it will allow the CSF to start draining on its own, helping the hydrocephalus decrease in his brain, allowing the brain to move back into place so that the cerebellum is no longer compressed into the skull. It is a pretty invasive surgery however, and some of the risks include miscarriage, pre-term birth (most women end up delivering 10 weeks after they surgery is done), damage to my uterus, and breaking my water and setting my into labor right then. We are really nervous about any of these things happening, but we still feel very strongly that the need for this surgery outweighs the risks. The surgery can only be done between weeks 19-26, and the sooner we can get in there and repair his back, the better the results will be.
The benenfits of doing the surgery:
- The probability that he will NOT need a shunt (a tube that helps drain CSF after he is born) is increased to 70%
- His ability to walk without braces or calipers is greatly increased
- The chances of him having a completely normal IQ and motor skill set are also greatly increased.
They have found that most kids who do the surgery may have to wear leg braces or have to do some occupational therapy, but most go on to lead a very normal and happy life. We are extremely hopefully that the surgery is going to help our baby significantly and once again, feel like it is the right decision. After I have the surgery I will have to stay in the hospital for 4 days and then in the area for 2-3 weeks for monitoring. If the surgery goes as planned and nothing goes wrong, we are hoping that the doctors will allow me to come home and be monitored for the rest of my pregnancy here with Dr. Ball. I will be on extreme bed rest and will not be teaching any more classes at the gym, or really doing any of my normal activities. My mom is amazing, and it taking as much time off as we need to come stay with me in Philadelphia so Dante can come back after the surgery and work and be with Noah, and then she will also be coming home with me to Utah to help keep things going at my house and to help with Noah as well.
I will not be able to carry my baby for over 36 weeks because at that point my uterus will get to big and may tear at the incision site of the surgery, but they don’t have high hopes of me even making it that far in my pregnancy. My goal when I come home is to make it as far along in my pregnancy as I can so that our baby can grow and mature as long as possible. July 12th will mark 36 weeks for me, and I am determined to do absolutely nothing except for lay in bed so that I can make it that far.
This past week and half have been a whirl wind of emotion and information overload, but Dante and I have both felt that peace within our hearts the entire time. We are extremely grateful to everyone who has already helped out by watching Noah for us, praying for us, and supporting us. We have been trying to carry on with life as normally as possible, and although this has been a lot to take in, we are still beyond excited that we are having another baby. We are going to love him just as much as we love our sweet Noah and are anxious for the surgery to be over and so we can have a little more peace of mind. We are grateful for the power of prayer, priesthood blessings, and the temple. We have felt comfort and peace through each one of those this past week and we know that everything will be ok.
Please still be excited for us and the fact that we are having another baby. We already do enough worrying on our own, and don’t need everyone else worrying and being sad for us as well. If you see us, please be positive about the situation and know that we love and appreciate all of your support, prayers in our behalf, and love. This is not a sad situation, I will admit that it is not our ideal pregnancy, but we are very happy that our little family is growing and we will have another child in our home to love and nurture. If you have any other questions about anything going on we would really appreciate it if you didn’t research things on the internet or speculate or make assumptions with other people on what you think might happen. This is how wrong information gets passed around and rumors get started. We have already had to deal with this, and right now ridiculous rumors are the last thing we need on our plate. If you have questions we ask that you contact me so that I can give you exact information that is specific to our son and what is going on with him. You can contact me through e-mail, text, or message me on facebook and I would love to fill you in on more information about our baby. I plan to keep updating my blog as we do surgery and everything to follow afterwards. Once again, please do NOT speculate or make assumptions about what is going on with our family and our baby, just ask me and I will let you know. We really would appreciate any prayers and positive thoughts in our behalf. We feel very confident in the surgeons at CHOP and their ability to help our baby. We know that he will be ok and that he is a strong boy and will be able to do anything in this life that he wants to do. We love all of you and thank you for your support and love.