You Heard and Answered our Cry

Oscar's favorite picture pose!

"Out of my distress I called on the Lord; the Lord answered me and set me free" ~Psalm 118:5~

The Lord heard our cries and answered our prayers. Thank you to each of you that have prayed for our Oscar's life so far.

Yesterday, Monday, October 9, Brian and I began our morning at Toledo Hospital MFM. Oscar's follow up ultrasound began around 9am. Through this ultrasound we found out nothing has really changed for our son which is a praise.  He continues to show the Dandy Walker Malformation, Bilateral Cleft Lip & Palate, Heart Defect, Ascites, Club Feet, and his left leg his shorter and bent funny. When reading that list of anomalies you may think my goodness that is a lot, but guess what yesterday there were no new malformations or defects. That is a huge praise! Along with that Oscar's heart was beating 153 bpm and he is weighing in around 2lbs, 11 oz and he is continuing to only be about 1.5 weeks behind what he should be. This is another huge praise because Oscar is continuing to grow and get stronger. Being the planner I am I figured we would be 2 weeks behind if his body was going to regress the way it had been. Nope he is growing just as he should be.



From that ultrasound the MFM office was trying something new with the pediatric cardiologist and the pediatric cardiologist sent their echo tech down to do the fetal echo. It was interesting laying there and seeing two very experienced techs (20+ years) working so diligently together for my son. Apparently the MFM ultrasound machine would be comparative to driving a car with all the bells and whistles when the cardiology ultrasound machine would be similar to driving a base car model. It would be like typing an important email with several of the most common alphabet keys switched on the keyboard. I appreciate moments like that on our journey. 

Oscar has never allowed a profile picture
until yesterday. This is a profile
of his nose and mouth.

In the world of doctors, nurses, specialist, machines, white towels/sheets, plastic gloves, and hand washing/sanitizer I see these individuals looking out for my son as people. We connect with them, we get to know them, we talk about their children/families, we laugh, and I cry and as professionals they don't, but I see them wipe a tear from the corner of their eyes. 


After being scanned for an hour or so by the echo teach with the assistance of the MFM tech our pediatric cardiologist came and scanned a little more. Just for your reference whenever a doctor comes into scan. First rule don't ask questions to the doctor or the tech. The reason the doctor is there is they are searching and trying to find answers to something that could be there or could not. When you are the one laying on the table you are hoping they are finding or not finding whatever they know is best. Around 1pm we consulted with our pediatric cardiologist. She told Brian, my mom, and I they found Oscar's PDA (Patent Ductus Arteriosus). This duct gives Oscar a chance at life! Without it there was no medical intervention in regards to his heart we could do outside of the womb. "Oscar's duct is there, but it is tortuous" Dr. Whitfield said. I looked at Dr. Whitfield and was like what does that mean? Apparently tortuous means full of twist and turns. A twisty and turny duct we will take over no duct any day. Along with that Oscar's heart is continuing to have fluid around it. Not a ton more fluid than last time, but still more. Oscar's heart function is remaining the same as well! It is by no means robust (as Dr. Whitfield says) or where it should be, but it is not worse. Dr. Whitfield also changed his diagnosis for his heart defect. Oscar either has Double Outlet Right Ventricle (DORV) or Tetralogy of Fallot (TOF).


Praises from October 9:

• Oscar has a duct in his heart which was not present before or they could not find when they did the fetal echo on September 6.
• Oscar is continuing to grow and get bigger and stronger.
• Brian and I were very much on the same page yesterday at the hospital in regards to communication. We are getting better at this :-).

Prayer Request:

• Oscar has Hydrops Fetalis which is a major concern. He has always had Ascites (fluid in the tummy) and Pericardial Effusion (fluid surrounding the heart). Hydrops is an indication that his body is not functioning the way it should. His kidneys and liver are also enlarged. Our prayer is that this Hyrdrops would stay contained to the tummy and heart and not greatly increase over the next 2 months.
• In the next month, we will be meeting with surgeon Dr. Galantowicz at Nationwide Children's Hospital in Columbus, OH and surgeon Dr. Romano at C.S. Mott Children's Hospital in Ann Arbor, MI. We will do consults with each of these surgeons to see their plan for Oscar's heart surgery after birth. Please begin praying for these consults/appointments. Allow Brian and I (me especially) to be open minded and truly listen to what these surgeons say and what will be best for our son. I am a person that forgives, but I don't easily forget and even though Oscar is not here yet. I am very defensive about Trisomy babies and I get mad when I feel they are being discriminated against. Help me to be a witness for the Lord during these meetings with surgeons and to be an advocate and voice for babies like Oscar. 
• Finally for Brian, Theodore, and I. This journey is hard on a marriage and as a parent to a toddler. Being pregnant I am more irritable than I should be. I can be snappy and rude to both Brian and Theodore. Help me to have patience with Theodore especially when I am tired and am ready for alone time. These days as a family of 3 are numbered and soon Theodore will be a big brother and not the baby anymore. Allow me to love and embrace the times when I don't want to read another story, be jumped over one more time, sing another song, or be clung too when I am leaving him at the sitter for work. I ask the Lord to provide a sweet reminder to me during these times because they are coming to a close and to cling to those precious moments because soon Brian and I's love will be split between two little humans that need and deserve the very best of us each and ever day.

Finally our day ended yesterday with a Palliative Care Meeting that started around 2pm. We met the NICU Social Worker, Director of Labor and Delivery, and Patient Care Supervisor at Toledo Hospital along with having the Fetal Concerns Nurse Cindy there and Katie the Genetic Counselor. Going into this meeting Brian and I kind of knew what to expect, but also kind of not. My take away from that meeting is it wasn't really for Oscar, but more for us (Brian, me, and Theodore). Due to Oscar having a life limiting conditioning their goal as the Palliative Care Team is to help us anyway they can. This looks like knowing Oscar's birth plan and being sure all parties (NICU, L&D) are aware of it and follow it, helping with setting up tours/answering questions about the Labor & Delivery along with the NICU, providing additional support to Brian, I, or Theodore, and finally they will help us transition Oscar home someday.


Yesterday was tiring and I am getting ready to begin a new day. Let me be a light for you today Lord and enjoy every uncomfortable feeling I have in my tummy from Oscar, hug Theodore a little too tightly today when I drop him off at the sitter, and make Brian feel so loved and appreciated today.

Thank you for being on this journey with us.