Hey all,
My next doctors appointment is a week from today, Monday May 2nd at 11:45 am. I have decided to stay with my OB/GYN Dr. Smith since she knows Joe and I so well and has offered to come and deliver at Barnes for me. This will just be a check up on Frankie and a run down on how all things are looking. I will keep you all posted! Lots of love!
Baby Frankie was diagnosed with a giant Omphalocele on April 12th, 2011. Here you can follow his journey with us and get updates on his health.
Monday, April 25, 2011
Saturday, April 23, 2011
As for the Omphalocele...
Joe and I will meet with the surgeon and the neonatologist again once we are further along in the pregnancy just to discuss more on the surgeries to be done once Frankie has arrived. Frankie will need roughly 3 surgeries to get everything all back to normal. I will continue to see Dr. Smith (she's absolutely amazing!) probably every two weeks so that she can monitor the O (Omphalocele). Dr. Smith will come down to Barnes to deliver Frankie via c-section so that I can remain with her. Once Frankie has arrived, he will be going to Children's Hospital right next door to Barnes. Once at Children's, he will remain there for 1-3 months in the NICU. They will monitor Frankie, possibly feeding him intravenous until he is able to consume breast milk. Once the organs are inside the body, what takes the most time is waiting for the bowels to start working correctly. This could take up to 3 weeks. So, we will become very close with the staff of Children's Hospital and we are looking forward to it because it is one of the best hospitals in the world! Everyone there is so smart and kind! As for now, I am not going to go to the doctor next week because we have had a lot to deal with these past 2 weeks and I just want a break from being poked and prodded at! If you have any questions for either of us, email me and we'll get back to you asap! Love to you all and thanks to all of you for all your prayers thus far!!!!!
Frankie's cute little face! We just love him to pieces already! Strong boy!
Fetal heart echo and meeting with surgeon.
April 20th 2011: 17 weeks pregnant- Joe and I arrive at Children's Hospital at 9am to meet with a pediatric surgeon and a neonatologist to discuss putting Frankie's organs back into his belly once born. There is nothing they can do in utero, unfortunately. Thankfully, there are several different things that they can do once he is born. If there is a hole in the sac that covers his organs when he is born they have to do surgery immediately. If there isn't a hole in the sac then they can wait it out. It's not as big of an emergency then. The biggest concern isn't getting the organs back into the belly, it is closing up the hole and putting the abdominal wall back together. This can also be done with help from either all natural materials or man-made materials.
At 2pm the fetal heart echo begins. This takes a total of about 2.5 hours. Baby Frankie moves a ton and getting him to sit still long enough for them to look at everything they needed just took time and patience. Thankfully the tech was amazing! And she was OCD and always made sure to get the correct pictures and sounds of the veins and heart pumping. Once the tech got all the necessary things she needed, she left and had a talk with the pediatric cardiologist. This was the last big hurdle that Joe, Frankie and I had to overcome. Once we knew the results of this test, we knew if Frankie would make it or not. We were shaking when the doctor walked into the room. Baby Frankie's heart looks NORMAL! Holy cow, thank the good Lord above! Prayers do work! Joe and I were in shock. We just didn't think the chances of making it through all these tests was very high so we prepared ourselves for the worst. For once, we didn't have to deal with the worst. What's next? The doctors will do another fetal heart echo on baby Frankie in 3-4 weeks just to make sure that everything still looks the same since I am still fairly early in the pregnancy and his heart is very small. Once I'm around 20 weeks they will double check to make sure that everything is still okay. The cardiologist said she was very confident that there was nothing wrong with his heart. As for now, we are praying all stays the same and that this pregnancy continues to be as healthy as possible!
At 2pm the fetal heart echo begins. This takes a total of about 2.5 hours. Baby Frankie moves a ton and getting him to sit still long enough for them to look at everything they needed just took time and patience. Thankfully the tech was amazing! And she was OCD and always made sure to get the correct pictures and sounds of the veins and heart pumping. Once the tech got all the necessary things she needed, she left and had a talk with the pediatric cardiologist. This was the last big hurdle that Joe, Frankie and I had to overcome. Once we knew the results of this test, we knew if Frankie would make it or not. We were shaking when the doctor walked into the room. Baby Frankie's heart looks NORMAL! Holy cow, thank the good Lord above! Prayers do work! Joe and I were in shock. We just didn't think the chances of making it through all these tests was very high so we prepared ourselves for the worst. For once, we didn't have to deal with the worst. What's next? The doctors will do another fetal heart echo on baby Frankie in 3-4 weeks just to make sure that everything still looks the same since I am still fairly early in the pregnancy and his heart is very small. Once I'm around 20 weeks they will double check to make sure that everything is still okay. The cardiologist said she was very confident that there was nothing wrong with his heart. As for now, we are praying all stays the same and that this pregnancy continues to be as healthy as possible!
Amnio Results
April 14th 2011: 16 weeks pregnant- The results are in.... Frankie has normal genetics! Thank the good, good Lord!!!!! Of course, that wasn't all the testing we needed to make sure he is okay. Next step, fetal heart echo. This is done because major heart defects is very common for a baby with Omphalocele. If the heart defect is large/major, Frankie would again either be still born or he would only live for 1-2 weeks after birth. If the heart defect was small/minor, the chances of him surviving were much higher, but still not 100%.
The amnio.
April 13th 2011: 16 weeks pregnant- Dr. Smith recommended that we go to the Advance Medicine Center at Barnes Jewish Hospital as they would better handle the Omphalocele. We get a call from Dr. Smith's office at 9:00 am and they asked if we could arrive at Barnes at 9:45 am. We hop out of bed and drive down to Barnes so that we can get the amnio done asap. Before the doctors did the amnio, the ultrasound tech came in and took a million pictures of Frankie. They wanted to make sure that all his bones measured correctly, that he had all his fingers and toes, that his face, brain, eyes, kidneys, and everything in-between looked normal. Thankfully, it all looked normal. Then came the amnio. Not so much fun. The doctors looked with the ultrasound to find the best place possible to insert the needle for the amnio. Once they found an opening, in he went with the largest needle I have ever seen. Baby Frankie moves.... A LOT. So they were very cautious not to poke the little guy with the needle (thankfully) but it turn, that causes more pain on my part (totally worth it). I closed my eyes, gripped my fists and held on until all was said and done. Next step, wait for results to come in in the next 24 hours..... Talk about a long 24 hours.
Gastroschisis or Omphalocele?
April 12, 2011: 16 weeks pregnant- Joe and I arrive to the doctors appointment on edge. We were so afraid of being told the worst possible news. After the ultrasound was complete, Frankie was diagnosed with Omphalocele. Our hearts were broken, shattered into a million little pieces. The doctor then went on to tell us what was next. She explained that I needed an amniocentesis as soon as possible. This would let us know if Frankie had Trisomy 13 or 18 which were the two most common syndromes seen with an Omphalocele (along with many other things they checked for, too). If Frankie is to have either of these it would be 100% life threatening. If I went full term he would most likely be still born or he would only live a month after birth at the most and he would be suffering the time that he was here. We were an absolute mess at the thought of loosing another child.
If you look at the blob above Frankie's abdomen, that is the Omphalocele.
If you look at the blob above Frankie's abdomen, that is the Omphalocele.
The most frightening call I have ever received.
April 11th 2011: 16 weeks pregnant- 5:30 pm- As Joe and I were driving to get dinner after taking a look at some nursery furniture at a few different stores, I receive a call from Dr. Smith. I was confused when I saw that she was calling. I thought maybe I had missed an appointment (we were going bi-weekly). Dr. Smith went on to tell me that the ultrasound tech from Expectations Ultrasound suspected that there was something wrong with Frankie's belly. She assumed the woman was correct since she had been doing it for many years, but obviously wanted to take a look for herself to check on the little guy. She told me the two most common problems were Gastroschisis and Omphalocele. Gastroschisis is a birth defect in which an infant's intestines stick out of the body through a defect on one side of the umbilical cord. An omphalocele is a birth defect in which the infant's intestine or other abdominal organs stick out of the belly button (navel). In babies with an omphalocele, the intestines are covered only by a thin layer of tissue and can be easily seen. An omphalocele is a type of hernia. She then told me she must see me tomorrow at 3:30 for an ultrasound to verify which of the two it was. After doing research that night we prayed and hoped it wasn't Omphalocele because it is usually accompanied by fatal syndromes or disorders. It isn't always, but it more likely. Waiting until 3:30 on Tuesday would take an eternity.
IT'S A BOY!
April 9th 2011: 16 weeks pregnant- At 11 am we had an appointment with Expectations Ultrasound to have an early ultrasound to find out the gender of the baby. My motherly intuitions were correct and it is a boy! Frankie Michael DiFranco due September 24th, 2011. This is when the ultrasound tech suspected there was something wrong with his belly but did not say anything to us about it because she is not a physician and can not say anything.
First Trimester- No work!
March 21st 2011: 13 weeks pregnant- First trimester is over! Back to work! No lifting over 15 lbs. Going to be hard when you're a 2 year old teacher, but it's doable!
February 7th 2011: 7 weeks pregnant- Went to my OB/GYN, Dr. Smith. She performed an ultrasound and confirmed the SCH. She then went on to tell me that there is only one thing that can cure the SCH, rest. Considering what I do for a living, getting rest or taking it easy at work is impossible. She then put me on light bed rest for the first trimester of pregnancy.
First photo of Frankie! Our little DiFranco nugget!
February 5th 2011: 7 weeks pregnant- Yet another trip to the ER. Bleeding increased and the doctor on call thought I was miscarrying and would meet me at the hospital to do a D&C if necessary. Ultrasound was done again and the clot had gotten larger.
February 3rd 2011: 6 weeks pregnant- Joe and I take a trip to the Missouri Baptist Hospital ER. Slight bleeding and we were very concerned. We immediately went to the ER because this is the beginning of our third pregnancy with no children. First pregnancy ended in a molar pregnancy at 10.5 weeks and the second ended in a miscarriage at 9.5 weeks. Ultrasound was done and baby was diagnosed with a subchorionic hematoma. SCH or Subchorionic Hematoma is a gathering of blood between the membranes of the placenta and the uterus. A more technical name is the chorion. Some doctors will also just refer to it as a blood clot.
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