Blessed with New Support

Some great things happened to us this week and we couldn’t be more thankful. God has been good to us with giving us just what we need at the right time and not a minute too soon!

I met with our new OB/Perinatologist at Sharp Mary Birch earlier this week, the doctor who will deliver our beautiful Samuel. She is considered a high risk doctor and has dealt with many other cases like ours. The entire 2 hour office visit was so efficient, yet comfortable. First, I had another ultrasound done to establish a baseline for Samuel’s conditions at this doctor’s office. This sonographer was just as amazing as the one at Scripps and talked me through all the screen captures… although I am now starting to feel like an expert ‘ultrasound viewer’ in my own right due to all the ultrasounds we have had done in the past 11 weeks. She handed me pictures of Samuel at the end and I hadn’t even asked for them! I quickly was moved into another room where a nurse practitioner examined me. My new OB came in immediately after. Her tone was so warm and comforting. I felt like she was a mother figure in some weird way. She explained how our follow-up visits will go for the remainder of my pregnancy and discussed the possibility for induction when I am full term to guarantee she would be the delivering OB.

Yesterday we met with a San Diego Children’s Hospice Team consisting of a Social Worker, a Spiritual Counselor and a Nurse. These three women have been specifically assigned to our family to provide aid during the remaining term of the pregnancy, the birth itself and post-term (for as long as we have with little Samuel). We have the option to use them as much or as little as we need them for things like: creating a birth plan and ensuring it is upheld, facilitating communications with the hospital, obtaining any resources we need, and providing quality and comfort care to our son either at an in-patient care facility (like a nice hotel with 24/7 medical care) -or- directly at our home if Samuel is more stabilized. During the 1 hour visit, each one spoke with great compassion addressing their role in the process. We also found out they are all believers in the faith! We prayed together at the end of the visit and will be seeing them again in a few weeks.

Here are some of the latest ultrasound pictures captured of our sweet Samuel:





Umbilical cord in front of Samuel's face









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Hand in front of Samuel's face

Heart Defect Confirmed

We are now 27 weeks along in the pregnancy. We met with the sonographer and a pediatric cardiologist this week. They looked at Samuel’s heart in great depth and listened to the heart’s sound waves. They ruled out ASD or VSD pretty quickly which is one of the more common heart defects in Trisomy13/18. ASD or VSD was suggested by our last perinatologist but it was never concluded. Something different was discovered and is considered only a minor heart defect. The right side of the heart is more ‘generous’ than the left side. On this larger right side, there is a tricuspid valve prolapse -or- in laymen’s terms, there is a regurgitation of blood from the lower chamber back into the upper chamber. The blood is supposed to be pushed down and stay down, but this is not happening. There is no way of knowing at this point if this heart defect could be of any real danger to him. Additional examination will be needed after he is born.

We have our first appointment at Sharp Mary Birch next week. I am looking forward to meeting our new OB who will deliver little Samuel.

Also, we have a new picture to share! Our other son turned 2 years old this week and during the photography shoot we asked to have some pregnancy photos done. Here is our favorite!

Plans Are Beginning to Take Shape

I am happy to report that this week’s doctor’s visits were both very positive!

We went to our 26-week ultrasound on Tuesday. The sonographer talked us through the entire scan, unlike my last two ultrasound visits at UCSD.

My two largest concerns I addressed with her were: 1) low amniotic fluid 2) growth of the cyst found on the umbilical cord. She educated me that the amniotic fluid was perfectly normal and the cyst growth is still inconclusive while we still do not know if there is any real danger to Samuel yet. Even though the cyst is quite large (8cm x 5cm in one angle), there are more things to consider such as number of cysts within the cyst and exact angle the baseline cyst measurements were taken at UCSD. Two new things that were discovered 1) a possible absence of a stomach 2) a possible a greater complication to the heart than what was reported at UCSD.
She is recommending a follow-up visit at the UCSD Hilcrest facility where we will now finally perform a fetal cardio echo exam to check Samuel’s heart. She works at this facility too and will do the evaluation for us next week!

The sonographer took great interest and compassion to our situation. We asked for one picture of Samuel and she printed ten! We discussed with her the possible ‘scenarios’ that could take place at Samuel’s birth and our feelings about when we would want to take corrective action to fix our precious Samuel and when we would not. We also told her we would like to deliver at a hospital that is capable to medically care for our son if we chose to take this route at the time of his birth. We do NOT want to be in a position to have to transport our son to another hospital while I am still recovering myself.

The following day we had a general check-up with my OB. I prepared myself to go over these ‘scenarios’ and build my case for the hospital I would like to deliver. Recap- at my last OB visit, she stated that she wanted me to deliver at Scripps which doesn’t have the neonatal staff or surgeons to care for a baby like little Samuel. When she finally came into the room to perform our standard biweekly check-up, she immediately gave me a big hug and told me I was so brave. To my surprise, she started the discussion stating “I am going to recommend you deliver at a different hospital because of the nature of your son’s complications”. What?? I didn’t have to say anything or plea my case to her. Before I knew it she was writing the name of a perinatologist/OB referral over at Mary Birch Sharp hospital and handed me the order for the cardio echo exam to take place next week. This cardio exam couldn’t be done without her blessing. Had the sonographer talked to my OB about our feelings on both of these things? I may never know…

We are so happy that things are starting to come together for us regarding at least a few of these really big and difficult decisions. Thank you to all who are following our blog and praying for us! Your prayers are already paying off greatly and we are feeling much stronger now with what lies ahead of us.