I wasn't sure which forum to put this in. I just wanted to share it.
Received in late May..
As you may know, Bella was born at 35 weeks on Tuesday evening coming in at a featherweight of less than 4 pounds. She has been in the NICU hooked up to numerous tubes and under the lights to lower her billiruben count and is doing very well. Karen is recovering well from the delivery.
On Saturday the doctors came in and told us that the chromosome studies came back and showed she had an extra 18th chromosome in all of her cells. Many babies with Trisomy 18 these days never make it out of the womb. Those that survive birth usually live less than a month; five to ten percent live to see their first birthday.
We know this much. Bella is truly beautiful. She is fighting and exceeding all expectations. She loves the special treat of being allowed out of the isolette to be held by her mommy once a day for a few minutes. When we changed her bedding tonight they took off her eye protection for the billirubin lights. Elizabeth held her for those few moments. She opened her little blue eyes and looked deeply into her sister’s eyes. I spoke to her she turned her eyes to me. I know as a premie her eye sight is not good, but I saw in those eyes a reassuring peace and with every second steadfast love.
I told her Godfather, Mark Rodgers, (she was baptized by our wonderful parish priest Fr. Drummond) today that our son Gabriel’s brief life taught us to focus our lives toward the eternal. Among Bella’s blessings is an opportunity to receive the grace to live in the moment.
Karen and I ask for your prayers for our little girl.
God Bless
Rick and Karen
In mid June
First, thank you all for your prayers. They truly have sustained us and I know they have meant the world to Bella’s beating the odds to date.
Second, I promise this will be the last for a while I just wanted to give you a quick update, a picture and pass on a couple of the many blessing we received.
Update
Bella is home! She came home after 10 days in the NICU. She is a joy to be with and is alert and as responsive as any little newborn. We now have the comfort of knowing that whatever may come, she will be with the ones who love her the most.
Bella is doing remarkably well under the care of her supermom with the able assistance of the rest of us mortals. With taking temperature, diaper changing and feeding every three hours we are feeling almost like ordinary parents with a premie at home. Needless to say sleep is in short supply around here. But we are grateful given the fact that only about 5 percent of all trisomy 18 babies see their two week birthday which we celebrated on Tuesday.
We have met with more doctors, gotten second and third opinions and the answers are the same; “she will tell us when it is her time and there is nothing you can do but love and care for her.†So the family is spending as much time as we can with her. It’s at once heartwarming and heartbreaking. With every passing day she is leaving a larger and deeper, much deeper imprint into the hearts of me and our children. As you can imagine the imprint was already there in Karen who had loved and bonded with her from the moment she knew her in the womb. We thank God for everyday with her. With everyday we get to know her likes and dislikes, hold and comfort her, calm her when she cries and just look at her endlessly. Every day our love and our bond grows with her, making it harder to come to gripes with having to let her go even though we are comfort ed by the certainty of her destination.
I was moved to write again because I wanted to share you two of the many gifts of comfort and support we have received. One is from a young boy, Brendan, from our church who also has an extra chromosome, trisomy 21 or Downs Syndrome, who is going through his second bout with leukemia. He was about to start his chemotherapy treatment which makes him very sick, when he found out about our Bella from our priest who was there to comfort him. On the spot he offered up the pain he was going to suffer for her healing. Please pray for Brendan, too.
And today I received the email below from a man I admire as much as anyone, Archbishop Charles Chaput of Denver. I have attached the email and his homily because it was a precious gift to us. We wanted to share this gift with you to thank you for all you are doing for Bella and our family.
God bless you and thank you for your prayers,
Rick, Karen, Lizzie, John, Daniel, Sarah Maria, Peter, Patrick and Bella
and received yesterday
Bella has been heavily sedated in a hospital pediatric intensive care=2 0unit on a ventilator for two weeks. She was at DC Children’s for the first week. After a rough week of less than stellar care, we had her transferred to Children’s Hospital of Philadelphia last weekend. Let’s just say that it is not home state pride by saying that CHOP is the best children’s hospital in the country. It is a warm and welcoming place where Bella is getting exceptional care.
She is fighting a virus that hit most of our family two weeks ago, me included. It was a heavy chest cold that stayed with us for the past two weeks. Unlike us, little Bella simply couldn’t move the congestion out of her throat and lungs and just ran out of gas fighting it to the point where she stopped breathing.
Over the past two days as the infection has subsided she has shown solid, steady improvement and we are hopeful that she will be taken off the ventilator in the next couple of days. We were worried that as they reduced the sedation she would have a difficult time because of the discomfort of the tubes and IVs going into her. But Karen, who has been at her bedside non-stop, told me that she was all smiles and sweetness all day long.
Thank you all for your prayers during this time. I want to particularly thank a gain Bella’s special prayer warrior Brendan Kelly. I have written about Brendan in previous emails. Brendan, who is a trisomy 21 child (Down’s Syndrome), is going through another bout with cancer and is on heavy chemotherapy. Recently, I visited Brendan to thank him for his prayers for Bella. I gave him a miraculous medal that Mother Theresa gave me shortly before she died. I told him that it was a special medal because it had been touched by someone who most surely is a saint.
A few weeks later Brendan’s father Frank told me that one day Brendan was about to do something that Frank warned would be dangerous. Brendan pulled the medal out of his pocket held it up to his dad and said, “don’t worry I have this!â€
Unfortunately, Brendan has been struggling mightily with frequent emergency visits to the hospital. His parents tell us he often offers up his suffering calling out loudly in pain over and over "For Isabella! I love Isabella! Jesus help Isabella!"
As I am coming to discover, there is so much we can learn from these little angels God sends to us in the form of bodies and minds that we call disabled. That it is us that don’t live simply, believe unfailingly and love unconditionally who are disabled .
Thank you for your prayers for Bella and Brendan. Two innocent children suffering somehow doesn’t seem fair, but leading souls to heaven is tough work.
