Our omphalocele story
Prenatal doctor appointments
This is written in cronological order. Therefore the most recent updates are at the bottom.
July 14, 2009
Our meeting with the pediatric surgeon. . .
We went today to meet with the pediatric surgeon. We really liked him. He was optimistic! We left feeling much better than when met with my high-risk OB (who acted like this was the largest omphalocele ever known to man). Our pediatric surgeon did not think so! He said he "thinks" (we won't know for sure until birth) that this is an average size omphalocele. To us, that is good news!!! About 24-48 hours after birth, the team of doctors will make a decision of when and how to do surgery. His goal is to have the liver and intestines back in the body within the first 7 days. The biggest complication that gets in the way with omphalocele babies is the heart. So far our little man has a strong beating heart that looks okay. In about 3 weeks I will go back to my OB where they will take a real good look at the heart (I'm wondering if they will do a 3D ultrasound). The surgeon did say we could anticipate at least 2 months in NICU. We were hoping our boy could be home for Christmas, but probably not. I guess that is the least of our concerns right now.
Thank you to all of you! The support via emails and phone have been amazing. Some of you have even forwarded our messages to others for prayer request. We appreciate that.
Thank you for the prayers that have been said for our baby boy. Of course we are still scared (I think that is only natural), but we have felt comfort, strength, and hope through God. Psalms 119: 76 says "May your (God's) unfailing love be my comfort." And it has been. He is faithful and good! We can't believe how many churches have our baby on their prayer list. This little guy doesn't stand a chance but to be a miracle with so many of you praying. Please continue the prayers and especially for his little heart.
Thanks again to all of you. God bless!
August 4, 2009
Another OB appointment. . .
Today we had our OB appointment. I think my OB was a little shocked at how well things are going. I smiled thinking to myself, "Power of prayer baby." :) Anyways, we spent a good 20 minutes watching our baby boy on ultrasound. I loved watching him try and scratch his head with one hand while blocking the doctor's view a little with the other hand. The spine was nice and straight (at our last appointment my OB mentioned scoliosis). This time he was pleased with how the spine looked.
With "O" babies, the heart is a big concern. He was able to get a good look at the heart and couldn't seem to find any defects! AWESOME! He did say he thinks the heart vessels are a little small/narrow. There was also fluid in the abdominal area. This is called ascites. My OB didn't like it at all and said it could be caused by HEART FAILURE. YIKES! However, after my appointment we had a tour of NICU at All Children's hospital. What wonderful people!!! I asked the two nurses that we spoke with about ascites, and they both agreed that it is common with omphalocele babies. After all, our baby does have a hole in his addomen- fluid will probably enter that hole and as long as it stays out of the chest cavity (which so far it is), all should be okay. They didn't seem concerned at all.
The nurse stated that at birth they would try to keep our little guy in my room just long enough for me to hold him before they take him to NICU. She said Daddy could walk right over with them to NICU and stay with our baby boy. Sadly, she said most moms are unable to visit their babies in NICU at all the first day due to recovery from the cesarean. Seeing the look on my face, she quickly added that as soon as I felt up to it (even if that was at 2 o'clock in the morning), they would wheel me over to see him again.
My OB is sending us to a pediatric cardiologist this coming Monday. He said that the cardiologist would be able to see things better just to verify that all is okay with the heart. When I called to schedule that appointment, I asked the nurse about the ascites (fluid). She stated that she does not think the ascites is from heart failure. She seemed confident that my OB would have been able to see heart failure. WONDERFUL! Yet another person that didn't seem concerned about the ascites.
I know many of you must be thinking, "Why doesn't she switch to a different OB. He is so negative." We did discuss that option. However, our research on our doctor indicates that we are in the right place. In fact, at least one of the doctors in this practice have been on TLC ("Baby Story", etc) for their work with high risk pregnancies. When we are there, we just know that what he says is usually preparing us for the worst. There is something about him that we really like and trust. I think they also have to protect themselves from legal issues- so they tell you the worst. Also, my OB is VERY thorough which is greatly appreciated! We are glad he is sending us to a cardiologist just to verify all is okay even though he didn't see anything wrong with the heart. A second opinion is always good.
We will let you know what we find out on Monday at the cardiologist. For now, we ask that you continue your prayers. THE LORD IS FAITHFUL. Psalm 77:14 says, "You are the God who performs miracles." We just know our baby boy will be a story of God's miracles throughout this entire journey.
Thanks for all your love, support and prayers. God bless.
August 10, 2009
Cardiologist appointment. . .
PRAISE THE LORD!!! Things are still looking up for our baby!!! Psalms 86:12 says "I will praise thee, O Lord my God, with all my heart: and I will glorify thy name for evermore."
We had our cardiologist appointment today and ALL LOOKS WELL!!!! At this point there are NO signs of blood flow obstruction, heart defect OR heart failure. PRAISE GOD! He said the heart is not exactly where it should be and that it is rotated a little. However, he said this is normal with omphalocele babies and they won't need to do anything about it. WONDERFUL!
He didn't really like the ascites (fluid) either. He said because of that, he can't 100% rule out heart problems just yet. Therefore, he will monitor the baby ONCE A WEEK for the next 4 weeks just to make sure. If all continues to go well for the next 4 weeks, he will just want to see me monthly. They use a cardiac scoring process to indicate a level of "normalcy" - with normal being 10/10. They take points off for varies cardiac "issues." Our baby boy received a cardiac score of 9/10. He lost only one point - and that was because of the ascites (fluid).
There was another doctor there visiting from Norway that gave his advice as well, and he said he would not consider ascites "normal" with omphaloceles but that it is NOT uncommon either. They just need to make sure that nothing serious is causing it. If it is "just" ascites, I get the impression it should be okay as long as it doesn't cause an infection. The doctor also said he liked the way the ascites fluid was flowing - although we are not exactly sure what that means or why it matters????? They also said the ascites could get better on its own. They mentioned that hydrops can cause ascites (it would not be good at all if our little man has hydrops), but at this point, they do NOT see evidence of hydrops. We pray that continues.
At our last OB appointment, they also saw the stomach is outside of the body as well now. They say organs can move in and out of the omphalocele sac during pregnancy. This could possibly delay surgery or require them to do surgery in stages. Frustrating, but not the end of the world. Overall, the news today was great! We'll take it.
We go back to the cardiologist next Monday so we will keep you all updated.
Love to all! And God bless.
August 17, 2009
Our 2nd Cardiologist appointment. . .
1 Thessalonians 5:18 says, "give thanks in all circumstances, for this is God's will for you in Christ Jesus."
And we are certainly thanking him YET AGAIN!
We are so very thankful for the good news we received AGAIN today. The work of the Lord is so evident. We had our Cardiologist appointment today, and he was pleased with what he saw. The heart is still looking good! Praise God. We were unaware, but I guess at our last visit "something" was reversed(I feel foolish to say that I'm not sure what was reversed as nobody told us- ha :), but whatever it was is no longer reversed, and the doctor was glad. So I guess we will be too. :)
Unfortunately the fluid is still there. However, he said he really thinks it is just being caused by the omphalocele NOT the heart!!! He said this is the best case scenario. More praises to God!!! God knows more than these doctors, and who knows - God just might have a purpose for that fluid, and I trust Him with that. So I continue to pray that He is in charge of it.
He wants to see me again next week, but he said as long as things look good at that visit too, he won't need to see me for a few weeks! WOW! We went from him wanting 4 more weekly visits in a row to only 2!
My mom made a prayer box for me. I continue to write all my prayers on notecards and place them in this special box. As each prayer is answered, I take the card out and place it in a ziplock bag. One day when our precious boy is old enough to understand, I plan to share these prayer notecards with him - all the prayers that were answered just for him. I can't think of a better way to share the power of prayer.
As you can imagine, we are elated with the news today. Our next visit is Thursday, August 27. We'll keep you posted.
August 27, 2009
A quote to share, "We don't always need to know where we are going as long as we know whom we are following. God is in control. Even when we wind up in strange places or unusual circumstances, the Father is not caught by surprise."--- Mike Clay
Our Cardiologist appointment...
The heart is still looking good! No changes.Yeah!!!! The ascites (fluid) has not gotten any better but it also hasn't gotten any worse. We're thrilled. The cardiologist is a little concerned about the size of our baby's chest. He said the heart is normal size (which is good), but that his chest is a little small which COULD be putting MILD pressure on the lungs. We are focusing on the words "could be" and "mild" -- positive thoughts.:)
If I understood him correctly, this could cause the lungs to not fully develop. However, the nurse mentioned several medications that can be given to our little guy after birth that have been helpful in developing the lungs(plus they can also give me steroids closer to the time of delivery to help the lungs develop).
He wants to see me back in about 2 weeks (September 14th) to do a lung/oxygen check on our baby. I will wear an oxygen mask for about 7 minutes then they will do another ultrasound to check to see that our baby's vessels and lungs are doing what they are suppose to do with that oxygen. The nurse assured me that they do this for any patient in our situation.
Once again our little guy was putting on a show for the ultrasound technician. He moves around SO much which never makes it easy for them to get the pictures they need (it took them about an hour again this time). Jim and I have decided that this is a good thing. He is already a little fireball. We need this little guy to be a fighter. . . so that is fine with us.:)
This Tuesday (September 1) we have an OB appointment. I'll try to send out an update then too.
September 1, 2009
Yesterday we had our OB appointment. We are thrilled to say that there is nothing new to report. We certainly like that. :) After all that we have been through, we welcome boring routine appointments and ultrasounds (no more drama please). :) This update will be short and sweet. Yeah.
Love to all of you and praises to our Lord for keeping our baby boy safe.
OB and Cardio Appointment
September 14, 2009
A quote to share. . ."Difficulties to a Christian are only miracles that have not yet happened."
This is definitely a difficult time for us that in the end will be our miracle - our testimony.
Today we had two appointments. First was our OB which went well. Nothing new!
Next, we went to the cardiologist where we had some scares that ended okay! (wanted to let you know that first) The ascites (fluid in abdominal area) is also now around the lungs. The cardiologist said that by medical definition, this would now be considered hydrops. Which scared me at first b/c the research I've done on this indicates that it can be very bad. However, this Cardiologist is known around the world for his work and has written over 150 medical journals - about 10 of these medical journals he wrote were about hydrops so he knows his stuff. He didn't seem worried about it. He said he still thinks it is just being caused by the omphalocele and that is best case scenario.
He was very concerned about the size of the lungs. He said they are very small and continued to say he wasn't even sure if they would function at birth and that a respirator wouldn't even be able to help him. (remember, I said it ends okay). Of course he is telling us this while they were doing the oxygen test so I had on an oxygen mask. Needless to say, the tears came out rolling thinking that our precious baby boy would basically suffocate. Once the oxygen test was complete, they saw that although his lungs are very small they WERE FUNCTIONING! In fact, he got a very good reading. Our cardiologist said that he now feels much more confident that they could help our precious baby boy breath at birth by respirator if his lungs couldn't do it on their own at first. WOW! What a scare!
Our OB wants to see us weekly now, but our cardiologist doesn't need to see us for a month. As long as our OB appointments continue to go well, I probably won't send out an update so don't panic if you don't hear from us for awhile - that will be a good thing! :)
We want to thank you all again for your support. You all have been incredible! Please keep the prayers going! We just hate to think about what our little guy will have to go through after birth, but God will bless him with strength (and mommy and daddy too). I just know God has His hands in all of this. He has a special plan for this boy.
Our final dedication page to Alex Emerson (if this link doesn't work, click on Alex_Emerson at the very top of this page)
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