Monday, November 29, 2010

Update on Laura

Laura weighed in at 12 pounds today!!! Great progress, but not great enough to keep the NG tube out. Next time Laura fails to drain a bottle I have to put it back in. :( Oh well. We tried anyway.

It looks like Laura may be teething tooth #5 and #6. She's also having some trouble with constipation and a few other annoyances, but nothing to worry about.

It's so nice not to watch Laura sweat during a feeding and also nice to see her tolerate a 45 minute therapy session! She's always conked out before then. It's sad to think that Laura is now weaned, but it was necessary for both her and for me.

Thanks for your continued prayers for Laura!

Saturday, November 27, 2010

Our Thanksgiving

Thanksgiving season has kept our hearts filled with gratitude for God's gracious sustaining of Laura through her surgery and back home. We couldn't help but smile each time we saw Laura on Thanksgiving -- she was so happy and cute.

Thanksgiving prep started Tuesday with Christina over for some baking. On the spur of the moment, we decided to make pumpkin ice-cream for snack. It was so good!!!!

Friends invited us over for Thanksgiving dinner. It was so nice not to have to worry about hosting in the midst of everything else.

I did make this tray of appetizers. It's modeled after something I saw in Southern Living. The rosemary roasted pecans were the highlight of the tray.

Happy Laura:
Doesn't this turkey look picture perfect?!

The meal was delicious and included roasted sweet potatoes with cranberries and apples; sauerkraut, watercress and green bean salad (!!), and homemade cranberry sauce.

Enjoying all the work.

Laura getting her Thanksgiving dinner bottle.

Dessert: pumpkin pie, apple pie, cranberry blueberry pie, pecan tarts and chocolate tarts.

The kids ended the evening in a dark room in front of the fire telling scary stories. :)

I've spent the weekend enjoying the fall decorations, realizing that Christmas is just around the corner. The kids and I made a calendar for December with the important things on it. Hopefully we'll be able to keep things fairly simple.

Tuesday, November 23, 2010

Rachel Turns 10

I was so glad that we were home in time to properly celebrate Rachel's 10th birthday!!! I grew up in a family where birthdays were "BIG". Not big in money sense, but big in the thoughtfulness, creativity of decorations, and effectiveness of making you feel special.

I went to Hobby Lobby on Saturday and came up with this little table theme, which I think Rachel enjoyed. (The above picture is not great, unfortunately.)

I also found a new skirt and hairband to make a nice little new outfit. It's always fun to have a new outfit for a special day. :)

Everything was pink and sparkly. Very girly.

James was with me when we picked out the decorations and I told him he could buy Rach a Christmas ornament for a birthday present. This is what he picked out:

Rachel wanted lemon cake so we added lemon zest to our regular 4-egg cake and then mixed lemon curd with whipped cream for the icing. Very good!

It's hard to believe that my active parenting years with Rachel are more than half over.

Before we know it Rachel will be a young lady.

The kids had lots of fun with the party (there were jellybeans sprinkled all over the table). Michael and I just tried to stay awake.

Yes, the cake was good.

Thanksgiving prep is under way! Pie crusts are in the fridge and waiting to be baked tomorrow!

Monday, November 22, 2010

Working Towards Normal

It is SO GOOD to be home!!! We've spent the weekend getting settled back in, catching up with the kids, and enjoying Laura's beaming smile.

She was so happy to see the kids again.

We are trying to head back to life that is somewhat normal. We still have a lot of doctor's appointments ahead of us, and another surgery for cysts in January. Beyond that there are still questions for the future, but we are thankful that the biggest known issue has been dealt with (the VSD).
We were especially happy to be home in time to prepare for and celebrate Rachel's 10th birthday, which was Sunday. It was a quiet afternoon, but a special one.

Laura just loves her Daddy, by the way:

Lemon Cake as requested by the birthday girl (more pictures to come).

Many bedtime moments are spent in this way: Laura visiting Rachel in her bedroom. It is precious to watch their relationship at the very beginning and dream about what it can become in the future.
And now for thoughts of Thanksgiving....I am so thankful I don't have to worry about much more than pies this year. Friends will be hosting us. Fall seems to have past in a blur and now it is almost Christmas.

Friday, November 19, 2010

We're Going HOME!

The nurses are working on our discharge papers and we are headed home!!!! Yay!! We are so thankful and rejoicing in the continued healing for Laura this week. She is as smiley and happy as ever and doing fairly well with her bottle feeds. We might be able to get rid of the NG tube! Our stay has been minimal compared to so many here, and yet we are ready for it to be over and for life to get back to a semblance of normal.

Thank you all for your many prayers and encouragements in the last two weeks. It is impossible to really be able to express fully to each of you our gratefulness for your many ways of help: meals, letters, gifts, prayers, babysitting, emails, etc.

Thursday, November 18, 2010

Clothed and in Her Right Mind


Yesterday afternoon we got to leave ICU and go upstairs to the Heart Center!!!! Laura is getting back to her old personality with lots of smiles. She had to have a PIC line inserted into her arm yesterday to replace the central line in her neck. That was very traumatizing for her (she was awake) but hopefully she'll get over that soon.

Up here at the Heart Center things are much more relaxed. We have a nice room with our own bathroom, plenty of room for sitting and cabinets for keeping our things. We are not getting any "time" out of anyone as to when we can think about heading home. Hopefully it won't be too long.

Laura is taking a bottle now!!! She has previously refused them. She's working on endurance to take her entire feeds, but we are glad she is doing so well. Thanks for your continued prayers for us.

Monday, November 15, 2010

The Kids Visit

The kids came to visit this evening and look what they were rewarded with:

Smiles!!! It sure is good to see Laura cracking a few of her smiles. We have missed them so much over the past 8 days. Maybe tomorrow she'll smile for us........

Knitting With Gloves and Other Random Thoughts

What a relief to have 2 days and 2 nights of progress under our belt! I am feeling so much more relaxed. We are hoping we are well on the way to recovery and might even be able to leave ICU as early as tomorrow!!!

Don't worry, Laura doesn't have to wear a hat in the hospital. I just decided to try it on her while she was awake. She hasn't smiled yet, which is sad since she is such a happy baby who normally can't stop smiling. At least she is not moaning anymore and only complaining part of the time she is awake. She's starting to play with toys and interact some.

Over the weekend we were put in "isolation" which meant we had to put on gowns, masks, and gloves when sitting in Laura's room. Not the easiest, but we are glad that is over. I did manage to knit with gloves on. I'm getting so much knitting done here. It is good stress relief. I've made that hat Laura has on, fingerless gloves, baby socks, squares for a baby blanket, and am also working on a shawl as well as a headband for Laura.

I was able to go home for church with the children yesterday as well as Sunday lunch and a few hours in the afternoon. One of us goes home each day to see the children for a few hours. It is nice to get out and good to be reunited with the others. Michael hopes to bring them all in this evening to see Laura. Maybe that will make her smile!!!

Emily took me out this afternoon and we visited the Mass. Avenue Knit Shop, the Best Chocolate Shop in Town, and the Earth House. We each bought one truffle to try: Caramel Apple and Pumpkin. Yum. Yum. Yum. And a good cup of coffee at the Earth House made for a nice afternoon visit.

We have become friends with a lovely family from German-speaking northern Indiana They have 5 children as well, about the very same ages as ours. Their daughter had a very complicated heart surgery and is doing well. It has been very fun to get to know them. We plan to stay in touch.

It is also heart-wrenching to learn the stories of others here. The second day of our stay a family lost their baby after a 9 week battle. Last night I met a mother from our floor in the Ronald McDonald House kitchen whose 10 week old baby is on life support. My heart just breaks for them. I wish there was something to do to encourage them. It's scary to have your child sick and watch them fight for life. It is something no parent ever wants to face.

We are so thankful for such a wonderful hospital and have been so impressed with all the staff here -- doctors, nurses, surgeons. Everyone is so kind, caring, and skilled.

Thank you all for your kind thoughts and prayers for us. We are grateful that Laura is doing well and that we can anticipate going home perhaps by the end of the week!!

Saturday, November 13, 2010

Into the Weekend

Well, there is not much new to report. It sounds like we are waiting for Laura's body to adjust to the anti-siezure medicines and then maybe she will be awake more, start to feel better, and maybe breathe better. There are still some ups and downs, and of course it is very scary for parents.

Michael and I have been taking turns going home each day for a few hours with the children. They are having a lot of fun with Grandma and a few others who take turns watching them.

Thank you all for your continued prayers for us at this very difficult time. I'll let you know if there is any change.

Thursday, November 11, 2010

Thursday




We were able to hold Laura through much of the afternoon, today! That was a huge treat for us. And for Laura too. After three days of Laura lying in bed, it was so nice to finally be able to take her (and all her tangle of cords!) in arms and sit and rock her.

All in all, this was a good day, albeit with a few minor hurdles.

Laura slept most of the day and maintained good numbers most of the way around. She has had a fair bit of congestion, though, so they've added some water vapor into her oxygen. The good news is that this vaporizor is helping keep her breathing clear. The bad news is, this is another "ICU only" procedure. So, we have to remain in ICU for as long as she is on the vaporizor, and then for a full 24 hours after she gets off it. In other words, we won't be leaving ICU tomorrow as we were hoping, after all. But maybe soon.

The other little hiccup today: Laura's right lung has partially collapsed. As I type, she is getting a special PT therapy designed to help recover full inflation and breathing in that lung. She'll get this therapy every few hours, until things resolve. The doctors and nurses are quite optimistic that this is not a huge problem, but it's just one more thing we have to get resolved.

It seems that Laura's heart has been doing great since the surgery, but it is the respiratory team that we keep drawing upon.

So, we continue to have a complicated recovery. But things are moving in the right direction, over all.

Thanks for your continued prayers.

Wednesday, November 10, 2010

Good News Tonight

Although it was a stressful day, we are happy that Laura is resting well and her heart signals, etc. are all very good. Her CT scan and EEG came back fine and tonight we were able to meet with the neurosurgeon to discuss her MRI from 2 weeks ago. Dr. Smith was able to relieve a lot of worries we had about the initial report we had been given. Laura will need another surgery to remove some cysts behind her nose, but Dr. Smith is confident that will take care of this problem with no lasting effects. This is such good news. We'll probably have this surgery in December, but it will be a shorter recovery time.

Thank you all for your prayers for us. It's a very trying time physically and emotionally and we are grateful for the myriad of prayers offered on our behalf.

A Hiccup in the Plan

We had a good night’s sleep, and Laura seems to have done well through the night. In fact, yesterday was such a good day, we and the medical team were all expecting to see some more strides forward today. But we had a setback this morning.


At 8:30, little Laura stopped breathing and went stiff. She appears to have had some kind of seizure. The doctors jumped in and got things stabilized quickly, and re-inserted a breathing tube. In other words, Laura is back on a ventilator again. And while she is not fully sedated, she is back on a bunch of meds to help her settle while the air clears. The EEG team was just in to get some brainwave data, and they are scheduling a CT scan this morning. We’re still not sure what caused the seizure, or what impact it may or may not have had. So, we’ve got some new questions to get answered.


We are so thankful for the genuine care of the doctors and nurses here in Riley ICU. They have been very sensitive, very quick to explain things to us, and very competent. But we’d invite your prayers for them as they endeavor to find out what triggered this morning’s event.


We will keep you posted. Thanks.

Tuesday, November 9, 2010

She's Doing Well!!


Laura is doing SO well!!! We are so thankful and relieved. The doctors and nurses are happy and so we just keep waiting for more healing.

Laura got off the ventilator about 3:30 this afternoon and has just finished drinking some pedialite from a bottle (YAY for getting her to actually take a bottle). The picture above shows her before the ventilator was taken out. She's off of full sedation and awake on and off.

The nurses put her hair up in a little pony tail. :) It's so cute and funny too.

Michael and I got out for a walk today -- it's beautiful weather here in Indianapolis this week (60'sF). We've been able to get some good sleep at night thanks to parent rooms downstairs.

Tomorrow they'll start weaning Laura off some of the medications and in the next few days we might be able to move upstairs to the Heart Center.

In between taking care of Laura, I've been working on some knitting, which has been fun. I've been able to read just a tiny bit from a few books as well. We're stocked with yummy snacks (thanks to friends) and Michael ran home to check on the kids who are having a blast with Grandma and the aunts.

Thank you for your continued prayers for us! We are so grateful Laura is doing well.

Monday, November 8, 2010

The first 6 hours

We are grateful that things are going all right. Laura has a fever, but that is common after surgery. Her color looks good, and there are no scares yet. The next 24 hours are the most crucial as her heart tries to recover from being stopped while the repair was done. It is hard to see her upset when her eyes flutter open for bits of time. I think it is more stressful than we realize watching a recovering baby.

We are hoping to get some rest tonight and praying Laura will stay stable. If she does okay perhaps tomorrow we can get the ventilator out.

Thanks for praying!

She's Out!

Surgery is over and went well!!! The hole is repaired and the surgeon was happy with how things went. We are just waiting to see her. Please keep praying for a good recovery.

Surgery Day


Today is the day. We'll check in at 6 a.m. at the hospital and hopefully by 1 p.m. or so we might be able to see Laura again. The actual surgery will probably only be around 2 hours long.

So many thoughts have been running through my head. I am thankful for a peaceful Sunday in which my heart was at rest. God is good to grant that.

While we would never choose hardships like this, we know that God uses these kinds of situations to work out His purposes for our lives. We are trusting in His perfect will for Laura's life and for our own.

Thank you all so much for your prayers, love, and encouragement. Everyone has been so kind and helpful and I feel as though it is impossible to express our thanks fully. I'll try to get back on here to post surgery results as soon as possible.


Wednesday, November 3, 2010

Miscellaneous Life

My mom took matters into her own hands and changed my mantle for me. I had no time or inspiration to change it, and decided it could just stay summer until Christmas. But, mom took a few moments to whip it into shape and here it is:

Michael got hit by a deer this morning as he was driving to a meeting. We are thankful that the car has no lasting damage. Things could have been a lot worse. Of course I'm just thinking about the deer meat we could have had.....

Laura just loves her Daddy. It's so cute.

More and more I'm realizing how much I love having three boys. I know girls were always a dream of mine, but boys are awfully special too, and it's fun that they are close together in age.

Soccer is over -- I didn't take many pictures but did get a few of Rachel since it was her first season.

I don't think I mentioned the wonderful visit we had from old and dear friends recently. The B's live in Vermont and stopped by Indiana on a trip. They've visited us in every state that we've moved to since my family left Vermont in 1982. And, their daughter Amanda even visited us in Scotland!! Their visit was a special treat and encouragement.

I got my bathroom cleaned and closet organized today along with putting away all the laundry. I told Rachel I'd pay her to run all the laundry through yesterday while I was gone. She did it! Seven or eight loads through (not folded, but that wasn't required) and only one set of white underwear gone pink (and the owner won't notice). Hmmmm.....I could change the chores around....or, maybe I should just leave this one for special occasions.

Monday, November 1, 2010

Laura at Six Months

I got a few six month pictures of Laura this weekend. I couldn't time it with her NG out, so we'll just have to consider that part of her history.

She's made progress in many ways since last month, so we are thankful for that.

Of course she's as happy as ever.

Don't you want to have three big brothers to take care of you!?

Daddy and his girls.

Not only are brothers great, but sisters too -- especially when they take you off to their room where they make a bed on the floor, "put you to bed", and make you stay there for an hour.

She totally knew it was all a game!


I'm still waiting for Laura's congestion to improve. :( I hate listening to that.

This is my last week home before surgery so I've tried to keep it free of extra busy-ness. Nonetheless, four of the days will involve doctor appointments (not all for Laura)! I'm planning to get out shopping for food, meet my mom for lunch, and have Christina come over and get my knitting projects organized. I'm also trying to do one special thing with each child. Today James and I baked something very, very cute. Can't wait to show you sometime.....