Baby Kohr Chronicles

We had our 26 week appointment yesterday, which included another ultrasound. The baby looks great! Growth is right on track, he weighs about 2.4 pounds now. One of the advantages of being with the high risk practice is that they have lots of fancy equipment :-) After the sonographer took all of her measurements, she switched over to 3D mode and got lots of great pictures of the baby in 3D.


Here he is!




We go back in 3 weeks for a regular pre-natal visit. And 3 weeks after that we will go back for another ultrasound. So far, the pregnancy is going very well and everyone is healthy. But, there is a chance we may end up having to have a c-section due to the current location of the placenta. At this point, if that is the worst we have to worry about (a c-section), we will take it! Anything to get this baby here safely and soundly :-) But we won't know for sure until after the next ultrasound. If we do need a c-section, they would schedule it between 37 & 39 weeks to avoid having Kara go into labor. So we may be meeting this little guy a couple weeks earlier than expected.

In other news, work in the baby's room is coming along nicely. Grandpa Jack came up a few weeks ago and installed electrical for ceiling fans in each of the bedrooms. He and Matt put fans in the 2 other bedrooms, and the wiring is all ready for the baby's room once we get it all painted and put together. The walls are now also primed and ready for their first coat of paint. And eventually, we will get wainscoting and crown molding up on all of the walls.

Between the great pictures, the baby getting really active, and all of the progress in the baby's room, this is all starting to feel so real!!

Thanks to all for continuing to keep us in your thoughts and prayers. We can't wait for you all to meet the baby once he makes is grand entrance!

We had our 21 week anatomy scan on Friday. We are officially considered normal!! Yay! The sonographer spent about 20-30 minutes taking measurements and explaining what they look for. As she took each measurement, she told us again and again that things looked good and were measuring completely normal. When she was done, the doctor came in and repeated everything. He pronounced this baby "perfect."

Even though we had had several good appointments, the doctors were waiting for this specific scan before they were willing to say that we are out of the woods. Because everything looked so good, they now consider this pregnancy normal.

We will continue to be monitored a little more closely than an average patient, but at this time, they have no concerns about the rest of the pregnancy. There are obviously things that they still look out for and things that can develop along the way. But, in regards to our history and our first two pregnancies/stillbirths, they have no concerns.

Kara goes back in 2 weeks for a routine prenatal visit- BP, heartbeat check, etc. And then we will do another level II ultrasound 3 weeks after that to confirm that things still look good.

I think we can officially begin enjoying this pregnancy :-) And start coming to terms with the fact that we will likely be bringing a baby boy home with us this summer!

We can't thank you enough for all of the prayers and positive thoughts that everyone has been sending our way. We are so grateful! We are so lucky to have so many people everywhere rooting for us and sending us their support. Thank you!!

We had our 16 week appointment on Friday, and everything looked great! We started with an ultrasound. It quickly confirmed that no cystic hygroma has developed since our last ultrasound. The sonographer said the baby's measurements are all normal and everything looks good. The baby was very active during the ultrasound- waving, bouncing around. We got some great pictures! We asked the sonographer to let us know if she could tell the gender. A second later she pointed to what were very clearly little boy parts :-)

After the ultrasound, we met with the doctor briefly. He said that everything looks exactly as it should at this point. We are measuring about a week ahead, but he said that is fine as we like big, healthy babies.

We go back in March for the anatomy scan which is a level II ultrasound and another meeting with one of the doctors. Assuming things look good, we think they will officially consider us a normal for the remainder of this pregnancy. Everyone at the doctor's office is very supportive. Again they offered to have us come back before the next appt if we get anxious or nervous. We will try to hold out until the next appt and not go in early and be too high maintenance :-) Kara has been feeling the baby move periodically for the last couple of weeks, so that definitely provides lots of reassurance.

Thank you all for all of the prayers and positive thoughts! We are so grateful for all of the support! We hope to continue to have good news to share over the next 23 weeks :-)

We are very happy to report that our appointment could not have gone any better today. The big thing we were looking for was a "normal" nuchal translucency via ultrasound. (Nuchal translucency is the size of the skin at the back of the baby's neck. A higher than normal measurement can indicate a number of things. In our case, it would be an indication of a cystic hygroma and an undeniable sign that this baby is sick with what afflicted Gracie and Matthew.) Anything under 3-3.5 mm is considered normal. This baby's result was a very pleasant 1.5 mm! For comparison, when we did this ultrasound with Gracie over a year ago at this time in our pregnancy, the measurement was 7.5-9 mm!

Also, we saw the baby move during the ultrasound, which was very exciting and a relief. With Lethal Multiple Pterygium Syndrome (LMPS), doctors theorize that the baby doesn't move at all during development, and that is how the joint contractures form. so, any movement this early in pregnancy is a good sign.

We aren't 100% out of the woods just yet, but we are pretty darn close. We go back in 4 weeks for another ultrasound to confirm that a cystic hygroma hasn't developed. Though the genetic counselor estimates our risk of that happening is around 5%. And that 5% covers the risk of a hygroma for any reason, not specifically related to LMPS. If everything looks good in 4 weeks, we are pretty close to being considered normal. And then we go back 4 weeks later for our level II ultrasound/anatomy scan. If all goes well at that appointment, we will be in the clear!

We can't thank you all enough for the prayers, positive thoughts and support you have offered over these last 12 weeks. We are so very grateful to all of you. And we truly believe you have made a difference! Thank you so much!!!

Sorry for not posting sooner...our last appointment was on Monday, and it didn't exactly go as we had planned. We had an ultrasound and then a consultation with one of the High Risk docs. Unfortunately, at the ultrasound we discovered that we lost one of the twins. Twin A looked great- good heartbeat, good growth. But Twin B did not have a heartbeat. They did two separate ultrasounds using different equipment to make sure.

Needless to say, we are pretty disappointed. But, the doctor has assured us that the loss of one twin should not have any affect on the surviving twin. Apparently, up to 20-30% of twin pregnancies lose one of the twins in the first trimester. Because it is still early, the tissue of that twin will most likely be reabsorbed into Kara's body.

So....that is the latest. We go back on Jan. 7 for a bunch of appointments: ultrasound to check for nuchal thickening (i.e., determine if the baby is sick), nurse's appointment to check BP, etc., prenatal visit with one of the doctors, etc. So that should be a busy day.

We are trying to stay positive and trying to focus on ending up with one healthy baby at the end of this. Thank goodness the holidays are upon us! We are pretty anxious to get through this next appointment, so the holidays will provide a welcome distraction!

We look forward to seeing everyone in the next few weeks!

I don't think we ever circled back and tied up the loose ends after we had Gracie. As you may or may not recall, when we actually had Gracie, we didn't have a very good idea of what had caused all of the issues. All of the genetic testing throughout the pregnancy had come back inconclusive.

Well, after she was born, we had an autopsy performed. Most of the findings were things we already knew about (i.e., organs small for dates due to the stress of the hydrops on her developing body, etc.). Luckily, our genetic counselor asked the pathologist if she could see Gracie after the autopsy was complete. When she was able to examine her, she realized that there were some very specific physical features that point toward a rare, specific genetic condition.

So, our working diagnosis is that both Matthew and Gracie were afflicted with Lethal Multiple Pterygium Syndrome. It is a fatal condition that only affects babies in utero, and the babies typically do not make it past the end of the second trimester. (There is a non-lethal version that can be very debilitating, but molecularly it is different so it is extremely unlikely we have to worry about having children with the non-lethal type.) The main components are a cystic hygroma, hydrops and webbed/fused joints. Because it is a genetic condition and neither Matt nor I are dominant carriers (you would see these attributes in one of us if it was a dominant condition), we are both recessive carriers. As such, there is a 25% chance that any child we conceive will be affected. The good news is that it is only a 25% chance. The bad news is that the stats reset for each pregnancy/baby. So each twin we are carrying right now has a 25% chance of being sick.

There is a way test for the gene. But there are only two labs in the world that do the testing, and both are in Germany. Unfortunately, they can only test with 20-30% accuracy, so the results are not very reliable. Until we confirm using genetic testing, there is always a chance something else is potentially the cause. However, statistically, the other possibilities are so unlikely that our genetic counselor and we agree that Lethal Multiple Pterygium Syndrome is the most likely explanation.

Because we have had two consecutive pregnancies affected by this syndrome, the doctors are pretty confident that if they see a cystic hygroma at the end of the first trimester it means the baby is sick and won't survive.

Until we get through that ultrasound, we are trying to take it a day at a time and trying to take some comfort in the fact that the odds are in our favor. We have been the statistical exceptions to many rules over the past few years, so hopefully that means this time the number will work for us.

Stay tuned! We will keep you posted as we learn new information and after each appointment. In the meantime, just wanted to try to bring everyone up to speed on what we learned since Gracie was born.

Well, looks like we are firing up the blog again :-) We have some exciting news that we have been eager to share for a few weeks: we are pregnant with twins! It is early yet as we are only about seven and a half weeks along, but we are staying positive and trying to enjoy being pregnant again.

Kara had her second ultrasound on Thursday. Both babies have good, strong heartbeats, and their growth is right on track. She also met with our infertility doctor, who has officially released her from their practice and into the hands of the High Risk doctors that we used last time. We have an appointment next week with the High Risk folks for another ultrasound and for a consultation about prenatal care, twin pregnancies, our complicated history, etc.

We won't find out for a few more weeks if either/both of the babies is/are sick. But we will go into all that in the next post:-) For now, we just wanted to officially share our good news! As always, any prayers and positive energy you can send our way are greatly appreciated!

Love, Kara & Matt