First and foremost, we hope you have had a blessed and holy time of Easter – in celebrating Our Lord’s Passion and Resurrection all for US!
As for Cristina and I, we were able to enter in to the Great Mystery of our Faith in a special way this year. On Good Friday, we decided to sit and pray/meditate as we watched The Passion on our laptop and during the 2 hours of the film, Cristina went through some of the worst post-surgery pains that she has experienced since the actual operation…..so she was really able to enter-in.
Unfortunately, one of the realities for Cristina since the surgery is that all of Maria Isabella’s movements cause her an intense stinging/stabbing pain near her incision. (and the ab muscles that were cut through in order to access the uterus) So, while we LOVE to feel little Bella move….and trust me, the other night Cristina said she felt her jumping (you could even see her stomach moving a little from where I was on the bed!)……it’s also a painful experience. It’s not as funny as it sounds, but we both sometimes pray – nervously – to God that she continue moving, because each day that she moves is a GOOD sign, but we know that it means pain for Cristina. It’s tough as a husband because I’m unable to really do anything to alleviate her pains…..and the more that I talk, the more that Bella moves!
On Saturday – the Vigil of His Resurrection – I spent the morning learning how to make Puerto Rican roast pork or “Pernil” (pronounced like Pair-Kneel for all of our non-spanish-speaking family) and Puerto Rican mashed & seasoned Plaintains or “Mofongo” (pronounced like Mo-Phone-Go) with a Puerto Rican family staying at the Ronald McDonald House. It came out pretty good and looks like this:
Not as good as my Father-in-Law’s, but still good.
For our “Easter-Vigil”, we had a visit from Msgr Michael Mannion (our new friend) who brought us – and 2 other Catholic families – Communion and prayer because none of us are able to leave the Ronald McDonald House to visit any of the nearby Churches. One of the families comes all-the-way from Chicago and are going through some of the initial phases of evaluation for treatment for their newly adopted son, Henry, who comes from the Ukraine.
Henry was born with an extremely rare disorder called Larsen’s Syndrome. His parents, Paul and Carla, have 6 biological children and have answered God’s call for them to adopt another – a special needs boy who was abandoned by his mother in the Ukraine. They were told about his disorder and special needs when they first enquired about adoption and specifically Henry, but when they had his first medical exams here in the US, they found that his physical condition was MUCH MUCH different than they had ever imagined or had been told. Please pray for Henry and for Carla as they pursue some of the options for his treatment at CHOP, they are an incredible family and it is obvious that if Love is the cure for any disease/disorder/wound, Henry is in very good hands! Check out their blog at : Bringing Henry Home.
That same night of the Easter Vigil, some of the other guys here who are staying at the Ronald McDonald House with their wives and I decided to grill-out on the back porch, as a sort of Easter celebration and a way to get out of the daily routine of things, especially being stuck in the house. It turned out to be a pretty nice night of grilling, sharing stories and enjoying the company of other families who are all going through difficult times themselves. In some profound way, we can see how God has brought us all together at this very time, from all around the world, to share in these scary but hopeful moments of our lives.
Well….back to our countdown. After counting down the 6-7 days between each wednesday, we arrived at our 4th appointment since being discharged from the hospital. It’s kind of weird but since finding out everything in the ultrasound about Bella’s back, back on Feb 13th, every ultrasound seems to cause us a certain amount of nerve/anxiety. I also feel like a pro when it comes to what the technicians and doctors look for once they get Maria Isabella in their sights on the ultrasound screen…..”Doctor, how are the fluid levels in her brain? How are the membranes on the Uterus looking today?….”. My wife usually has to pinch me to shut-up before I practically run through the actual check-up without giving them time to get all of their data!
Praise God, today everything (fluid levels, toes/feet/leg movement) seems to be going exactly the same…which is a VERY good thing! Maria Isabella seems to be jumping around late at night while we watch a movie or play games on the bed, but by the time she’s looked at in the Ultrasound, she’s back to a breach position. She’s definitely as stubborn as her mother…..and the Doctor tried to get a good picture of her today but right when she had moved enough for the good quick shot of her face you see in the picture above, she started moving again and facing downwards in the breach position. The doctor was laughing and getting a little frustrated, “Oh, well if that’s how it’s gonna be Maria, then forget it!” she told her.
After finishing up, we were able to head down to the NICU to visit our friend’s daughter…..the woman that we mentioned in a previous post that had global Membrane Separation (one of the risks associated with the surgery) and had to have a C-Section only 2 weeks after her Fetal Surgery. Her daughter, now 28-29 weeks old, (or 1 month out of the womb) is also doing really well! She’s tiny….a little over 12 inches long…..but her development is going really well! Please continue to keep them in your prayers…it’s a long road ahead and she has had to sacrifice being away from family while she lives here at the Ronald McDonald House and in the NICU at CHOP. The NICU at CHOP is world-renowned and is one of the most beautiful yet warm/comfortable ICU units that I’ve ever seen, even in pictures. Here’s a little breakdown of how it’s set up:
That’s all of the news we have for this week. We thank everyone who sent cards and messages to Cristina on her birthday Friday…and thank you to all of those who have been praying and supporting us…..you continue to be so generous and have taken a HUGE load of worry off of our shoulders as we slowly and nervously count down each week as it passes!
Please continue praying….I will try to update this twice a week….and I’d love to share more of the stories of the families and children who are staying here at the Ronald McDonald House….their stories and their joy is amazing….we are truly in the midst of living Miracles!
Thank you and may Our Risen Lord Bless you!
Andrew (and Cristina and Maria Isabella)