Friday, January 30, 2009

Where we've been this week

Going into surgery (Jan 26)...

Just after surgery (Jan 26)...

Extabated, removal of breathing tube (Jan 27)...

Holding my girl for the first time (Jan 28)...

Step down unit (Jan 28)...

Going home today (Jan 30)...

Thursday, January 29, 2009

One more night

Although we received the official blessing of the staff to head on home, we are staying one more night. Bradley wasn't completely comfortable with a 4 day stay following open heart surgery so we are going to settle for a 5 day stay.

Marissa is doing well. She has her color back and is chatting up a storm. She's connected to a wireless EKG monitor so we are able to walk up and down the halls with her, which she seems to enjoy. Her incision is healing beautifully, despite some pain and discomfort she is doing remarkably well.

She had a quite a bit of an upset when her tylenol dose was delayed due to a bit of ignorance. There were lots of tears and she managed to throw up, literally, all over me. We cleaned her up with a warm sponge bath, changed her bandages, and held her close.

Going home already?!?!

Marissa's team of care takers just made their rounds and we have a thumbs up to go home TODAY. We are both nervous and feel that it might be too soon, but each of the doctors on staff (and there were several) felt very confident that she was ready to be in our care 100%. We have some errands and training to do before they will discharge her, but we'll be out of here sometime today if all goes well.

I just hope the roads are more forgiving than they were yesterday...Cleveland weather...shrug...

Oh holy night

Bradley and I both stayed the night here and the space available was very tight. I didn't get to even lay down until close to 2 am and Marissa was poked at all throughout the night. Despite attempting to start an IV, a blood draw, and X-rays (all in the middle of the night) Marissa handled each visit very well. She cried each time, but was able to fall back asleep. All in all, it was a restless evening.

She had a rough start this morning too. After overeating, she threw up and had to have her sheets and bandages changed. There's a nurse doing her clinicals here that Marissa has been mesmerized by, Licia or "L". Although she didn't smile at her, Marissa just kept looking at L with happy eyes. It's nice to see her looking happy.

Wednesday, January 28, 2009


I finally got to hold my sweet baby.


We were transferred to the step down unit today!!! :-) This means a few things, the main point being that we are one step closer to taking Marissa home. Marissa has no more lines, except for oxygen and they continue to monitor the oxygen being circulated in her blood and her heart rate. She is doing absolutely fantastic. I nursed her 3 times today and she fed very well. That is a critical point of her recovery and ability to go home.

Dr. Mumtaz, her surgeon, said that as long as she continues to feed well and if we are comfortable she is likely to go home on Thursday or Friday. Can you heart surgery and she is home within days?

We are so thankful that the Lord is answering our prayers and taking such good care of Marissa. God is working on my heart through all of this and I don't think I've ever been more thankful for his blessings than I am in this moment.

Tuesday, January 27, 2009


One critical step down...they have removed Marissa's breathing tube so now we get to see her cute little face. We were told that babies with downs sometimes have issues following extabation, so far Marissa is holding her own quite well. Her stats look great and they lowered her pain medication levels. We were told to limit her stimulation so I'm sitting at the head of the bed just looking down on her. She's absolutely gorgeous. I'd give anything to trade places with her right now.

We wait.

We pray.

Mobile Me

You can see pictures of my wonderful family at

Update on Marissa

I apologize for not writing to each of you individually, there is just so much to do and say... I truly appreciate all of your thoughts and prayers. The amount of support we have received has been endless and we are eternally grateful for all of your love and kindness. Thank you, thank you from the bottom of our hearts.

Now for the update...

Marissa's surgery went very well. Although we arrived at 6:15 am, they didn't get started until 7:42. They were finished at about 2:45 and we were able to see her at 3:15. Throughout her surgery she did a fantastic job and tolerated everything according to their standards. They were able to suture 2 holes closed and the VSD (the main reason they chose to do surgery) was patched. A small hole remains, but it is nothing to be concerned over and will likely heal itself.

She is now on the PICU and they are taking excellent care of her. I was told she had a rough night, but the nurses were able to adjust meds and fluids to make her more comfortable. She has several lines, which is rather intimidating, but they are hopeful that at some point today they can extabate her. From that point, the other lines will slowly be removed. As her nurse told us, Marissa will let them/us know when she is ready for all of this to occur.

Despite everything, Bradley and I are holding up well and doing what we can to keep the stress levels low and manageable. The surgery is behind us and we can breath easy. The next 24 hours are critical, but she has so much prayer support and the doctors and nurses are simply remarkable, we are anticipating things to go smoothly.

Thank you, again, for your praises and prayers. Marissa is doing wonderfully because of the love of all her family and friends.

Monday, January 26, 2009


We are spending the majority of the time in the Ronald McDonald waiting room. Periodically, we are venturing out for a walk through the hospital.

We continue to wait and pray that this is over quickly and as painlessly as possible for out precious little girl.

Saturday, January 24, 2009


For those that are unaware, Marissa will be having her heart surgery on Monday Jan 26th around 8 am at the Cleveland Clinic. The surgery can take anywhere from 4-6 hours. Marissa will be out for the entire procedure and we will be in a waiting room where they will give us updates about every hour or so.

We know this is the very best for her, but it is still quite traumatic. Thank you, in advance, to all of you for your praises and prayers for our little girl.