Weekly update

Sorry if I mis-wrote on the last post about my appointments. I think I wrote that I had one yesterday but I meant to say today. Today I had a BPP (biophysicial profile) via ultrasound, echo, and meeting with one of the pedatric surgeons at Childrens.

First was the BPP. This is where via ultrasound they measure each babies amniotic fluid in the sacs, watch them practice breathing, check their heart rate, etc. The best score is a 8. They both received a 8 out of 8. So the day started off well. Their heart rates were down from Monday which was great.

Next was the echo at Childrens. We never really get much information from the echo because the technician gives it to the fetal cardiologist to read and then he reports to the pedatric surgeon. The technician did measure them for weight. Each weighed 3 pounds. The doctos said about 30-40% of Blakely's weight is the teratoma. So she actually probably weighs 2 something. But Palmer is beefing up.

Last we met with one of the pediatric surgeon's. We normally meet with Dr. Lim, but this time with Dr. Crumblehorn (spelling?). He was very nice. Talked a little over our heads but got his point across well. He first started by saying that he had great news. I really could have cared less what he said after that-ha! All I heard was good news. But I continued to listen anyway.

Blakely's CCO (combined cardiac output) was in the 750's on Monday. Today it was 604! OMG! She is still not showing any signs of heart failure and seems to still be thriving. My fluid was high today, 14. This is concerning but not too concerning right now. Unless the fluid continues to increase or if it starts to effect Blakely in any way or starts to effect me then we have a problem. He said that at times they do remove some of the fluid via needle, but really would only want to do that if necessary because it would most likely send me into pre term labor and with me already having contractions might get something going. So as of now we are just going to let it ride.

The surgeons met this morning and have changed their approach to Blakely's surgery. They feel that a total removal of the teratoma might be too risky for such a small premature baby. Now if she makes it further gestationally then that plan again would change. But since they feel like the girls will be here within the next two weeks at most a new surgical plan has been devised.

Once Blakely is born, they will immediately wrap a turniquote of some type around her aorta below her pelvis. This will but off blood supply to the major vessels of the teratoma. They will then dissolve some of the major vessels and then release the turniquote. At that time it should start to die. They will then take her to surgery and take off the portion of the teratoma that is outside along with her tailbone. Once she is stable and healthier, which they said would be a couple of months later, they will go back in and remove the interior portion of the teratoma. Then she should be completely done with Mr. Tera Toma! or Terry as we like to call him.

They said that this is the safest and best option for her since she will be so premature. I agree!

They also keep reminding us of the small but possible chance of the hemmorraging of the SCT upon delivery. If it hemmorages she will bleed out within 2 minutes. We are all obviously praying praying praying that the surgeons can carefully remove her from the womb without this happening.

So today was a great day! I am on strict orders to rest. On Monday I will have another BPP, Echo, and my second fetal MRI. Then as always assessment with the doctor afterwards. We are all going to hope that this meeting is the same or better and that this pattern continues for 2 more weeks. Which at that time I will be 31 weeks and we are so, so, close to our 32 week marker when our odds increase dramatically of success.

Just another emotional roller coaster but I enjoy the highs and not the lows. I am anxious to meet my angels but happy they are keeping up the good work inside. I think they are doing better because of the Graeter's ice cream here in Ohio. It's amazing and obviously they like it. Guess I will just have to take one for the team and eat it everyday!

Thank you all for praying for my specific prayer because it worked. Continue praying the prayer and maybe throw in a little prayer for my anxiety level to stay low. The closer I get the more anxious I become. Also, my daddy will be traveling home tomorrow, Kala on Sunday, and Jeff & AK to Mason on Sunday. Lots of my loved ones making destination changes.

Information

Good morning from OHIO!

I have settled at the Bradley home. They are the most generous and kindest family and I am so thankful to be here with them.

Yesterday after Jeff left and I drove to Mason which is about 20 minutes outside of Cincinnati. Ashley, the Bradley's daughter went with me to the DMV here so I could become the proud owner of a temporary handicap driving pass.

I laid down for a bit while waiting for my sister who flew into Louisville yesterday morning. Then she rented a car and drove onto Mason to stay here with me for the rest of the week. Hooray! I got a great surprise though...my daddy came with her. I was so happy.

We ate dinner with the Bradley's and got to know each other. So that is about how the day went. It was a good day!

Tomorrow we have another echo at 10:30 and then a meeting with a pediatric surgeon that is also in practice with Dr. Lim at 2:00. Daddy & Kala and both going with me. We hope to get great news and continue to make appointments at least for a couple more weeks. So keep praying that tomorrow's appointment reveals a miracle.

Also, many of you have requested a address for me here. We haven't had time to get a post office box in Cincy yet, but I have a address for the Bradley's. I don't want to post the address since the blog is public, so if you need/want it just shoot me a email at kandjmoran@gmail.com.

29 weeks-update from Ohio

I am 29 weeks today! We have hit a great milestone.

I had a appointment with the maternal fetal medicine practice for ultrasound and then a echocardiogram here in Cincy today. We also met with Dr. Lim who is the pediatric surgeon.
We also took tours of the NICU & the RICNIC. Both facilities were great and will take good care of the girls.

Our meeting today with Dr. Lim was sobering and emotional. Blakely's cardiac output has increased to the 750's. Just as a reference the dangerous and "high" levels are 800 and obviously higher. She seems to be handling the increase well and is showing no signs of heart failure. Palmer is continuing to do very well too. My amniotic fluid was around 10 which is not the best but far from the worst.

Pretty much we were told today that they are hoping, hoping, hoping that the girls make it to 34 weeks gestation. Dr. Lim said the likelyhood of that is very small and a more likely date for delivery is within days to a week or so from now. This was a big shock to us! Obviously the older the girls are the more likely they will not only have little problems but have a much higher rate for survival. There are many many factors that go into how well they will do at any age. The concern for delivery within the next week or so is that Blake will not be stable enough to have surgery due to her prematurity and that she will have heart failure. As for Palmer she will have issues to due prematurity as well. So it would be a hard road for both and their survival rates drop.

The plan they have given us today is for me to see the OB team here weekly for now and have a fetal echo. weekly as well. There is no way to decide right now when the girls will arrive. Our hope as well as the doctors is that as each appointment passes we make another appointment, so on and so forth, until we reach 32,33,34 weeks. Everyday that passes our odds of a good outcome increase.

Although we knew all of this information it had been a long time since we had heard it and now the time is here. It is very scary and un-nerving not knowing when the time bomb is going to explode, to say.

We put ourselves on the waiting list today for the Ronald McDonald House. They did not give us a time frame of how long we would be on the list. Jeff and his mother leave tomorrow morning to head back to Birmingham. He is going to finish up work and return this weekend for good. I will be staying with the Bradley family here in Ohio. My sister is flying up tomorrow to be with me and I am so thankful. My family & friends will come after we know more at the end of the week.

Things are moving quickly now, but then on the other hand, time is passing too slow. I want to close my eyes and wake up and it be 34 weeks. Obviously not possible. I am doing better with my contractions now that they increased my Breathine dosage to 5 mg every 4 hours. I have developed a lovely set of swollen ankles (which I am not happy about-ha) and am still gaining a "appropriate" amount of weight which I will not reveal. Sorry folks. I intend on spending as much time resting as possible and well to be honest praying.

There are so many of you who read this blog and pray for me, my family, and these girls every single day. Today I have a specific prayer request:

I am asking that tumor stop growing or slow way down, which would allow for Blakely's cardiac output to remain in the safe zone. I am asking you to pray that these babies will continue to defy the odds and show their strength by holding on to 34 weeks. That the surgery for me goes perfect and Blakely's surgery goes perfect and that in November Jeff and I bring home two healthy baby girls.

I know that is a lot. I am hopeful, confident, and trusting in the Lord and need each and everyone of you to do the same. There is power in prayer, so get to praying people!!!!

Here we are

Jeff & I officially left Birmingham today, well we both left, but he will be going back for a short time. I flew out of Birmingham into Louisville and he picked me up there which worked out amazing! It's about 60 some odd miles from Louisville to Cincinnati. So I hardly had to ride in the car at all and that was a good thing. I was dying by the time we made it to the hotel. The flight was good, except I spilled my whole coke zero on my white maternity jeans and it was all because my belly bumped the tray. Really??? By the way, airplane bathrooms, not friends of extremely pregnant ladies. It was like a shoebox! Ha!

We arrived at the hotel which is down the street from University hospital where my first appointment is tomorrow. We have a day of appointments along with NICU, RICNIC, etc. tours and our final meeting with the doctor at 5:00. At that point we will know a much better idea of what is going to happen over the course of the next couple weeks (cross our fingers).

I will update everyone tomorrow night. Thanks again for praying for safe travels today-we made it!

27 week 4-D

Eventful as always

Friday evening I started feeling sort of funny. A little dizzy, weak feeling, sort of crazy (more crazy than usual-ha). I felt better Saturday then it started again. So my mother advised me, because I didn't have sense enough, to call my OB here in Birmingham. The nurse said that I needed to go to Labor & Delivery to get checked out. Once I got there they hooked me up to the monitors the nurse realized I was having contractions. Who knew?!? The nurse gave me a shot of breathine which stops contractions. I ended up having about 2 shots then they finally released me around midnight. I am on the breathine every 4-6 hours until we go back to Cincinnati. It makes you really jittery and your heartrace, but stops the contractions. The doctor said contractions are normal for women carrying twins. As long as I don't dilate things are still good.



Today I went to the see her for a follow up. The girls both looked wonderful. My fluid was down which is great! Everything looked wonderful. I wasn't dilated so that is really good. She insisted I take it extremely easy until we go back to Cincinnati in two weeks. The girls cooperated today too and we got some great pictures of them! I will post them soon.



Skip forward to today, which is Thursday. Saw Dr. Gonzalez, the MFM. Everything still looked really good with the girls. Oddly enough Blakely should be the only one with a higher combined cardiac output, but seems that Palmer wants to join in on the fun too. Dr. G said that output is around 600 something and the scary category would be 800 something. We are creeping up on scary but not at a rapid pace. He seems to agree with the doctors in Cincy that 30-32 weeks is much more likely than 32-34 weeks for delivery. I am 27 weeks this week. I will be starting a steroid treatment next week to boost the girls lungs. Once we get to Cincinnati I might receive another treatment, not sure though.

As Dr. G says, all the dominoes are lining up in place and if we can make it to a safe due date then we can hit the first one and they will all fall in to place. Keep your fingers crossed!

I go back to Dr. G & Dr. C next week, then off to Ohio on the 25th. I am beginning to become nervous and anxious. Obviously which are expected. I don't like these two emotions, not one bit! I prefer to be calm cool and collected. I have a deep sense that everything is going to turn out just perfect. I just don't like not knowing the unexpected.

Update after Cincinnati-July

Yesterday evening we arrived back from our 2nd follow-up trip to Cincinnati. We were going back to have a follow-up ultrasound, echocardiogram, and meeting with Dr. Lim. Things seem to be going well with the girls. The teratoma now measures about 10 cm, which is still only about 20-30% of her body size. So this was good news. Her cardiac output has increased but not so much that she is in danger. Blakely is handling it very well. They looked at her brain, kidneys, intestines, bladder, all major organs and everything is great! Palmer is doing wonderful too. Both babies are growing very well. One technician measured their estimated weight, Blakely (2 pounds 6 ounces) and Palmer (2 pounds 1 ounce). Another technician measured them at 1 pound 15 ounces and 1 pound 13 ounces. We were told there is a 4 ounce margin of error. So a good estimate is that they probably both weigh around 2 pounds, give or take. I was really happy about that.

Dr. Lim does have one small concern. The amniotic fluid normally measures between 5-8. Mine is around 10. He said I am at this point in no danger and neither are the babies. If the fluid increases to 12-13 or higher, this is cause for concern. Now that we are back in Birmingham I will be monitored 2-3 times a week with ultrasounds, fetal heart tones on the girls, fluid measurements and fetal stress test. This is called biophysical profiles. The doctor has a scale and a rating for each test. They add it all up and that is her biophysicial profile number. I had to have this done when I was pregnant with Ashlyn Kay. It determines if they are thriving in utero.

If my fluid goes up we will have to go back to Cincinnati at that time. If all stays the same we will not go back until July 26th. This will be for again a followup ultrasound, echocardiogram, and meeting with Dr. Lim. At that time we will also tour the OB floor, RCNIC (regional center for newborn intensive care) and the NICU at University.

I will most likely not come home once we go back. If I do it will only be for a week or so then back up to Cincinnati for good. Dr. Lim is excepting but not hoping to deliver the girls by c-section between 30-32 weeks. That is the 1st-3rd week of August. He is crossing his fingers (as well as us) to be able to wait and deliver between 32-34 which was the original plan. That is the middle to end of August. Either way I will go up the 1st of August to stay, possibly be put on hospital bedrest at University, and then deliver when necessary. Once we go back in 3 weeks Dr. Lim and Dr. VanHook (the OB) will be able to give us a much more concrete date of delivery.

We were also thrown a slight curveball yesterday. Jeff & I were originally expecting to only be in Cincinnati until first to middle of October. We were told that both babies had to stay in their NICU's until my original due date which is October 11th. Blake will then stay 4 weeks (at minimum) after that for post-op surgical reasons. So the earliest we will be bringing both babies home is the 2nd week of November. Bummer big time! Anybody got any snow gear? Haha!

We are planning on trying to get into the Ronald McDonald House which is located right next door to the hospital. It is really nice from what we understand.

So, all in all the visit yesterday was a positive visit. I am very happy that the teratoma seems to be leveling off rather than speeding up its growth. Everyone who is praying must be praying hard because something is working! Keep it up!

I will update everyone next week if there are any changes.

I can not express enough how appreciative Jeff & I are that each of you who read this blog pray for our family and our girls. It means so much.