Tuesday, April 29, 2008

Lions and Tigers and Bears, Oh My!


Mary had her first visit to the zoo today. It was chilly, but we bundled her up - those are socks on her hands!
While we were in the Tropic World exhibit, I saw one very lonely and sad looking monkey (I think it was a monkey. I know some animals, like gorillas, are not really monkeys, but, you know what I mean). I even commented about it to Scott. It was strange to see only one monkey in that entire section. As we were heading into the next habitat, I saw a sign that said a baby monkey had died there recently. The zoo was not sure why, but the baby had just become too weak to hold onto it's mother. The baby was born last November and apparently a doctor from Loyola's NICU had been treating it. I'm assuming the sad monkey we saw was the baby's mom. I know this sounds silly, but I truly felt heartbroken - here was a baby almost exactly the same age as Mary, being treated by the same doctors who cared for her. But this baby was dead. I know it was just an animal. But that mama nursed her baby, and carried her baby, and slept with her baby - just like me. Oh, how grateful I am to still be able to do all those things with my own sweet babe.

Sunday, April 27, 2008

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

~Emily Dickinson

I dreamed about this poem last night. I have always loved it. It was my inspiration this past winter. I tried to remember it whenever I was feeling particularly anxious. However, it was more an exercise in "acting as if". I didn't actually feel very hopeful. I was so afraid Mary was going to die during, or right after, her surgery. When I woke this morning, with the remnants of Miss Dickenson's sweet verse on my mind, I finally truly felt hopeful. Mary's feeling pretty good, too.

Saturday, April 19, 2008

Home Sweet Home

There is nothing like staying at home for real comfort. ~Jane Austen

How happy and relieved we are to finally be home! Mary was delighted to see her brothers and I was just so glad to see my own bed. I took a shower, gave Mary a bath (being careful to not immerse her incision, of course) and we snuggled together for a four hour nap. We woke to dinner, enjoyed a quick game of sweet revenge and then caught up on some family reading before heading off to bed.

We have an appointment with Dr. V for an echo and some blood work on Monday - he is keeping a close eye on the fluid still surrounding Mary's heart.

There is so much I want to share about our time at Loyola, and some lessons learned through this ordeal, but that will have to wait for a later time. For now, though, here is a picture of Mary, gnawing a cinnamon raisin bagel. Charlie and Sam were both much older than 5-1/2 months before anything other than breastmilk passed their lips - and it was something more 'perfect', like avocado or sweet potato. Also, when Scott suggested giving Mary teething biscuits during the drive home from the hospital yesterday, I rolled my eyes with a great big, of course not! She's too young! But as we all know, mama gets to make (and change on a whim) all the rules.


And really, after what Mary's been through, she can have pretty much anything she wants!

Thursday, April 17, 2008

Blip

A tiny one. We thought we were going home this morning. I packed up in record time and while waiting for Scott to come with our chariot, Mary's cardiologist came in. He told us her echo showed she had some fluid around her heart. He said it wasn't too serious at this point, but he really wanted to watch her, and repeat the echo on Friday. Hopefully, there will be less fluid then, and we can head home.

I'm a little tired of being here. When I was getting ready to go last week, I complained to Scott that I was dreading the stay in the PICU again. He suggested I think of it like a little hotel. LOL! Not. However, I am so, so grateful that I am able to be here with Mary around the clock. Even 20 years ago, most hospitals didn't allow parents to stay overnight. I would be feeling much more crazy if I had to leave her each night. I also feel blessed that we have the kind of support in place to help with Charlie and Sam. I would like to be home by Sunday, especially - Charlie is turning 9!

Tuesday, April 15, 2008

Rise and Shine

Here is Mary this morning at 6:30 am. That's the baby I love to see! She slept really well last night. I was a little worried how the whole sleeping in a crib would go - we don't own one - Mary is used to sleeping in the big bed with the rest of her family. But she is actually doing okay. She is still on oxygen - her respirations go up when she's asleep. There is nothing unusual about still needing the oxygen, but the sooner she gets off it, the sooner she can go home. She'll have an echo tomorrow, and hopefully we'll be home in the next day or two. Although, it's not too bad being here, with smiles like the above!

Saturday, April 12, 2008

Road to Recovery

This morning they extubated Mary. The surgeon was so sweet, rocking the bed to comfort Mary when she first came off the ventilator. One of the other doctors even commented on what a good job she was doing calming Mary.

This experience has really restored my faith in the medical community. Every single person who has cared for Mary has been so incredibly loving. They always, without fail, comment on what a cute baby she is, before treating her. Each of them seem to truly love babies and children! When Mary was going back for surgery, I actually placed her in the anesthesiologist's arms. It was much more comforting than seeing her roll away crying on a stretcher. The surgical nurse describes the anesthesiologist as a great big teddy bear. And she really is!


Charlie and Sam were able to visit this morning right after she was extubated. Mary was still out of it, but it was nice to have our family together again.


Also, Mary had her first post-surgery meal tonight at about 5:30. She nursed like a champ, even though she is still pretty sleepy.


Here's a picture of her right where she belongs - back in her mama's arms.

Friday, April 11, 2008

Joyful Update

Mary is done with surgery! We are right now waiting for her to make her way up to the PICU. The surgical nurse came out and told us that she came off the bypass machine perfectly. Her heart started right back up, as if it had never missed a beat :) Also, they were able to save her pulmonary valve! Praise God! He has blessed us, again and again. She may still need a replacement in the future, but for now, this is the best news possible. Soon she should be in her room, and we can kiss her chubby cheeks. Hopefully she will come off the ventilator soon, and then recovery happens quickly after that. Thank you for your many prayers and messages of support!

Blessed are the clean of heart, for they shall see God

Scott, my sister, and I went to the chapel just now to pray for Mary. I was looking around and my eyes landed on the stained glass with the 6th Beatitude on it. I immediately felt a peace wash over me. I know that Mary is seeing God right now! I can see this time in the operating room as a gift to her. God is making himself real to her in a way that many of us may never know. This is much harder than I expected, and also not nearly as terrible as I feared.

Good Morning

video

Here we are on our way to the hospital. Mary does such a good job of keeping our spirits up!

She was very happy when we woke her up at 5am this morning. She was all smiles at the hospital until just before they took her back. At that point she was just really tired and hungry.

Emily planned this for me to keep me busy during my hospital stay.

Thursday, April 10, 2008

'Twas the Night Before Surgery

Here we are. I know it's going to get a little bit worse before it gets better. Yet, God is good. All the time.

More tomorrow...

Saturday, April 5, 2008

Pre-Op


Oh, this baby is so innocent. She trusts us to meet her every need. She expects that we will always make the best decisions for her. We're trying, Mary girl, we really are.

Tuesday, April 1, 2008