Viability

I consider this week a major milestone for little Samuel. It is week 24 and is the first week in the pregnancy for “viability” as my OB points out, meaning it is the earliest recorded week a baby can be born and actually live outside the womb! Of course, this possibility more than likely applies to normal, healthy babies. It is still reassuring to know this fact just in case I was to go into preterm labor at any point.

I also believe because of this “viability” factor, it is probably the same reason why most states will not allow abortions after week 24. I didn’t know this time table until recently (week 18 when Samuel was diagnosed). The doctors have made Dan and I very much aware, and several times. Initially, we felt they were pushing us in that direction, but the moment we took the firm stance and said there is no possibility, they all eased up. My OB has even asked me if I chose a name. When I told her it was Samuel she said it she loved it and it was absolutely perfect. She has referred to him on several occasions as my “dear sweet boy”. I sense she does have compassion in her heart for our situation and I do feel much more comfortable now talking to her.

Dan and I decided our next steps are to determine the hospital we will deliver. We have a set of questions and scenarios we want to run by our OB then make the decision. We also want to speak to a neonatologist about some of Samuel’s complications, namely the major one so far found- his meningomyelocele or neural tube defect located around his sacrum / lower portion of his spinal cord.

On a separate and happy note, Dan was finally able to feel Samuel kick for the first time! It took place sometime last week. He was so happy to finally have the opportunity to feel our baby’s movements. The frequency of little Samuel’s movements have been still erratic and a lot of them are still very soft. But I have no doubt that as he grows bigger, his dad will have many more opportunities!

Struggling with Upcoming Decisions

Today I have been given even more information to consider, some from my OB and some from a Christian lady (friend of a friend) who had a baby with Trisomy 13 almost 10 years ago who lives right here in San Diego.

At my OB visit today, no problems were found with the baby or my own health. However, certain recommendations my OB gave me only several weeks ago have been now overridden because of reasons given to her by the UCSD Genetic Specialist (the one with the poor bedside manner I mentioned in my past post). Originally, my OB recommended me to deliver at a specialized hospital with a level 3 neonatal intensive care unit (NICU). Today, she says I should deliver at Scripps which only has a level 2 neonatal unit which isn’t really prepared to care for a baby with Samuel’s condition. She also acknowledged the UCSD doctor’s recommendation to not wear a fetal heart monitor or do more follow up exams on Samuel’s heart. But I did sense that if I wanted to push things to go back to the original plan, we could. I left the visit today feeling somewhat angry and more confused than ever.

Tonight my husband and I decided to make a phone call to a woman we learned had a baby girl with Trisomy 13 almost 10 years ago and talk to her about her general experience with doctors and labor & delivery decisions their family made. We got the referral from Dan’s sister Shiela and had a good feeling she would give us some well needed perspective from a Christian standpoint on some of these big upcoming decisions we are about to face. In summary, she left everything in God’s hands and had a remarkable testimony of faith. Her and her husband chose not to take any heroic, aggressive means (surgery-wise) and let God’s will be done however it was to play out. It was also their hope their daughter would be born alive and they were fortunate to have this happen! Their little girl survived longer than any other Trisomy 13 case in that hospital and went home with the family 1 week later. She lived for 7.5 weeks (much longer than the median age) and finally went home to Jesus. Her story left me feeling hopeful again. I was able to remember again that I am not in control (this has been a huge struggle for me) and that alone is giving me back the peace I need to allow the remaining of my pregnancy to take place as it should and not be so worked up over every little minor detail of Samuel’s condition. In some ways (I told my husband this tonight) I feel like I am my own worst enemy. I have a constant battle in my head wanting to know every single little detail, researching the severity, wanting to know all my options, wanting to do the right thing…. yet there is no peace about any of this! I seem to be making myself stir crazy when all I probably need is a lot of prayer and ability to focus that everything will be just as it should in God’s timing.

22-Week Ultrasound Follow-up

Today we had another ultrasound with the UCSD Genetic Specialist so we could check the status of Samuel's internal organs. It took about 45 minutes and this visit was definitely not as uncomfortable as the last one. Both Dan and I were much more at ease now that we have digested the information of his condition over the past 4 weeks, but there is still not a day that goes by that we don’t hope and pray for some tiny, perfect miracle to transpire that can fix our little boy. Today’s findings in the ultrasound were similar to what was found 4 weeks ago. His heart is still strong but there may be an AV canal defect or a hole in his heart (still not conclusive), his kidneys and bladder are still enlarged and his neural tube defect is still pretty extreme but not life threatening. Samuel seems to have stabilized for the most part but his growth seems to be slowing. 4 weeks ago he was about 2 weeks smaller than his real gestational age. Today, he is almost 3 weeks smaller then his real gestational age. They determine this by taking measurements of the cranium, humerus and femur. From my research, this is pretty common for Trisomy 13 babies.

The biggest thing that came out of today’s session was our follow-up discussion with the doctor. Of course, she was very frank about his grim chance for survival. But the shocker for me occurred after I asked when we'd have another follow-up visit to verify his true heart condition or severity of his other organs. Her response, “No more follow-ups are recommended at this point because we essentially know the outcome of his life and what would truly be the point?” Not the best bed-side manner I felt. She said if having follow-up visits and further in-depth ultrasound scans would put our minds at ease then we could continue, but it would not based on the doctor's recommendation. I was shocked because I thought doctors would be all over this type of thing, wanting to watch him closely week by week since he is so high risk to pass at any time, but it’s quite the contrary! This hit me pretty hard. She did recommend follow-up visits to monitor my health (there is a risk I may develop preclampsia) and to check Samuel’s heart beat every two weeks. And now its seems the rest of my pregnancy becomes a waiting game and it is not sitting right with me.

Next week I will have another check-up with my regular OB and I have decided to talk to her about my options. I think I will ask for more ultrasounds of my sweet Samuel since there are so few chances I have to see him. I have always looked forward to these types of check-ups in the past and just because we now know he has a chromosomal defect does not change my longing to see him and know his current condition.

Another major discussion topic that came out of today's session was the doctors recommendation to not monitor the baby if/when I go into labor. Basically, if there are any complications during labor and the baby goes into fetal distress, we would let nature take its course and not put me through an emergency C-section. I hadn't even consider this. It really was too much for us to think about at that moment and we are not anywhere close to making this decision yet. I thought monitoring the baby for any labor was such a typical thing but I learned today it is definitely a mother's and father's choice.