Thank fo your prayers! EmyG has been on dialysis since last night. So far no leaks or complications. Her potassium went down, and she is tolerating the passes of fluid in and out of her belly.
They continue to have issues with her blood pressure. Docs are stumped.
Please continue to pray for dialysis to be complication free and effective. Also, please pray her blood pressure can be controlled and better stabilized.
Emy has been doing well. Her potassium is slowly creeping up so the need to start dialysis tonight. Normally they have to wait 2 weeks to start dialysis after putting in a catheter. We knew this wouldn’t be an option due to the renal agenesis.
Please pray there are no complications with dialysis and that it all goes smoothly.
EmyG was born this afternoon. She is 1.11 kg. The docs expected to have to intubate her immediately after birth. However, she began breathing on her own. She has remained able to breathe on her own, with only a cpap machine to aid with oxygen.
Rebekah is doing well. The procedure went well and without complications.
Baby’s heartbeat dropped a few more times. Docs want to do a c-section to prevent any complications with blood pH and other concerns.
Please pray Rebekah is safe and healthy throughout, with no complications or concerns.
Please pray Emy has lungs good enough to survive. That she has no complications from the c-section. That she has no damage from the heart rate drops. That she survives and can start dialysis successfully.
Rebekah is doing well. She is hooked up to a fetal heart monitor, and a contraction monitor. She has been having small contractions every couple of hours, but she does not feel them. What is concerning is that every time she has contractions, Emanuela’s heart rate drops. The docs say this is indicative that Emy will not tolerate a vaginal deliver.
We are blessed to be able to hear her heartbeat constantly. It is, however, nerve wracking when we can hear Emy’s heartbeat slow down.
We will be meeting with the rest of the care team at some point today.
Please pray for stable heartbeat throughout the next few days. Pray Emy can stay in the womb at least until Thanksgiving or later. That Rebekah is safe and has no complications with her care.
Rebekah’s membranes ruptured at 3:45 am on November 24th at 32 weeks and 3 days. This event is not unexpected, but it is something we were hoping to avoid. Emanuela will no longer be able to receive amnioinfusions at this point. We pray her lungs are developed enough to survive after birth. She is also measuring at about 1.1kg. The smallest baby that has successfully made it was 1.2kg at birth. The plan at the moment is to have EmyG remain in the womb as long as possible so she can grow. If she is too small, it will complicate the dialysis procedure.
We departed Omaha around 2pm and arrived at the University of Minnesota Medical Center this evening. Rebekah is checked in and will remain in the hospital until baby comes. Once Rebekah is moved to the Antepartum unit, I will not be allowed to be with her due to COVID restrictions (the pain and loneliness that this brings us is solely on the shoulders of those who did not take this seriously… but that’s a discussion for another time).
Please pray EmyG has well developed lungs, and they remain healthy even without infusions. Please pray for continued and increased growth for Emy. Please pray for Rebekah’s safety and well-being as she is forced to be alone for the coming weeks.
God has blessed us. Regardless of the outcome, God is good and He provides. We are blessed to be where we are, able to stay with family. We are blessed to have a fantastic physician who has agreed to take on EmyG’s case. He sees the value in her life. We are blessed to have met with a team of physicians (on more than one occasion) who are well versed in this particular path of treatment she would need. God continues to provide through work.
As Rebekah updated in the last couple of blogs, we have a name, and we had a major door opened.
EmyG is quite small, but she is growing. She is still too small, so if she is born anytime soon, she will not survive. She needs to grow at a good pace in order to be big enough for any of the post-birth interventions to be likely to work. Please pray that EmyG grows more and more each week, much more than she has been.
Rebekah is doing well. She needs to remain on modified bed rest so as not to go into early labor. Please pray that Rebekah and EmyG occupy the same physical space for many weeks to come!
What is next are the fine details. We are still battling with insurance. We are working with a number of people to address this issue. At this point, we are almost definitely having EmyG out of network. So not only are the amnioinfusions likely not covered (at the moment), but the cost of labor and delivery will be out of pocket (at the moment). If plans shift, we will need to figure out logistics to get to a new location.
I absolutely hate seeing Rebekah cry. It stirs something within me that I have never felt before. It’s this aching, uneasy feeling when I see tears streak her face. As her husband, it is my honor to love and cherish her, to protect and nourish her. So when I returned from a walk and saw her sitting quietly in the living room, tears running down her face, I forced the sick feeling down and asked her what was wrong.
“She has DiGeorge…” Rebekah said quietly.
DiGeorge syndrome is the result of a microdeletion within the human genome of chromosome 22. It has a number of effects, albeit variable phenotypically, on an individual. They can have: underdeveloped thymus (impacting their immune system), heart defects, clubbed feet, developmental delays, and in rare cases, BRA.
The tears on her face were for a loss of hope. We were praying baby would be genetically normal so she could continue on in the Mayo trial and we could give her a shot at life. But any genetic abnormalities rules us out of the trial.
The next day we went to UWHealth for a follow up ultrasound. Luckily baby still has some fluid to keep her comfortable… For now. The attending told us no one would take us for amnioinfusions due to this genetic abnormality. Whatever hope we had vanished. The UWHealth staff were unaware of anyone else doing amnioinfusions outside of a trial other than a doctor in Georgia; she would be unlikely to take us.
Hope vanished. The thought that baby had an option out there, but it was denied to her, and she would die as a result, was indescribably painful. We had to find something, someone, who would give her a shot. DiGeorge individuals live fairly normal lives, and we needed to fight for that.
We prayed. We had lost all hope, and I think we both felt guilty about that. We need to have ‘faith the size of a mustard seed’, but we lack even that. I had a realization in that moment, however. I had no hope in the situation, but I have constant hope and trust in God.
Baby Menon 