The big sis

Gracie: Can I just hold Maisy standing up?
Maggie: No, I'm sorry.
Gracie: Please!!! I promise I'll be really careful.
Maggie: I remember asking my mom if I could just stand up and hold babies too but she always made me sit down so I could be safe.
Gracie: Okay. [pauses for a moment] But is it alright if I hold her standing up?

Oh, there's no place like home for the holidays...

Maisy is home!! They released her yesterday and we are so thrilled. We have an appointment in Denver in 2 weeks to either evaluate or schedule surgery. It sure is nice to have her home and we are happy in a million ways!

Oh, there's no place like
home for the holidays
'Cause no matter how far away you roam
When you pine for the sunshine
Of a friendly face
For the holidays, you can't beat
Home, sweet home

Oh there's no place like home
For the holidays, 'cause no matter
How far away you roam
If you want to be happy in a million ways
For the holidays, you can't beat
Home, sweet home

Blessings

I wanted to update this morning because I know that some of you are checking up on us to see about Maisy's surgery. The past few days have been CRAZY.

On Monday, Maisy was transferred to PSL's Rocky Mountain Hospital for Children. They took her into the new hospital and the cardiologist and pediatric intensivist looked at her. They said that she looked great and sucked down 65 cc's from her bottle. They also said that she didn't look like a baby in heart failure. The next day they did an echo-cardiogram (ultrasound of the heart).

The cardiologist sat down and talked to me about some reasons that he was considering not going through with the surgery. He still has hope that the VSD (the hole in her heart) will close on its own (although it has the characteristics of a moderate rather than a small VSD). This was about 11am and the cardiologist said he would consult with his colleagues and get back to me around 2pm.

I stayed at the hospital until 4pm and still no word, so I asked the nurse to let me know if they decided anything. Long story short, we didn't get word until after noon yesterday that they are not doing surgery today. Basically, they feel that surgery will probably still be necessary, but Maisy is doing well enough that they want to hold off and let her get bigger. Maisy's heart anatomy and size would make the surgery a little more difficult to do right now. The cardiologist (the partner of the one I mentioned before) said that he hopes Maisy will prove them wrong about surgery and just take off growing and get well on her own. They haven't determined a new surgery date, and I think it will all depend on how Maisy is doing.

In the meantime, they are hoping to send Maisy home in "a couple of days". They think that she can just grow at home until it is time for surgery. Right now they are trying to figure out exactly what she needs to eat in order to grow better and are trying to get her to take more orally, but even if they need to send her home with a feeding tube, they will. We will still be visiting the hospital but Maisy is on the pediatrics floor where they allow children to visit. She also has her own room with a tv and its own bathroom. I'm taking the kids today to have some bonding time with their sister.

We feel really blessed to be under the care of such great doctors and are excited to get Maisy home. Today she is 5 weeks old. Gracie said this morning,"I wish with all my heart to have Maisy home". Hopefully the plan won't change this time. I used to think I liked drama, but I am really starting to miss being boring.

Maisy's transfer

Maisy was transferred to Denver this afternoon. I have to admit, I was teary as I sent her off to begin this whole process in Denver. I wish that our lives were such that we could just drop everything and be there to ride in the ambulance with her, and to stay at her bedside 24-7. At the same time, however, I'm grateful for 2 older kids and for school because I think it has been the reminder we need to keep some perspective. I'm glad I don't have 24 quiet hours a day to think about heart surgery. I don't think I could face it.The transport team was really nice. This was their bright green ambulance with the festive holiday wreath.Here is the bed Maisy was transferred in. They hook her up to monitors, just like they do in her Nicu bed.

Maisy is up to 5lbs. 13oz. Can you see her little cheeks starting to fill out?

All I want for Christmas...

Surgery

We talked to the doctors earlier this week and surgery is scheduled for 7:30 AM on Thursday morning, December 16th. Maisy will be transferred back down to Denver on Monday morning. It will be her 2nd ambulance ride.

In Denver we'll be at Presbyterian St. Luke's hospital and they'll do some in depth exams and tests before the surgery. Maisy is graduating from the NICU to the PICU (Pediatric intensive care unit). They decided to put her there because that is where she will be post-op. Our little girl is beefing up for her surgery. She is now up to 5lbs 12.8 oz. I was thinking of supporting Maisy in a different way. I'm going to gain a pound in support of Maisy. 'Tis the season! Anyone want to join me?

My mom is coming out on Wednesday to help again with the kids. We are so blessed. When I talked to the person scheduling the surgery, she said that most babies go home within 5-7 after the surgery. I'm trying not to get my hopes up too much, but am giddy about the idea of having Maisy home for Christmas. Tomorrow will be her one month birthday. We miss her.

I usually get to go to the hospital in the morning for about 2-3 hours (while friends watch the kids) and then again in the evening for about 1-2 hours (after the kids are in bed or a little before). I usually call first thing when I get up in the morning to see how she did through the night and to get a weight update. Maisy is eating her bottles well during the day and is still getting fed through her feeding tube all night long.

Justin is keeping his head above water. He was told by a lot of people that this would be his hardest semester. He began the semester working really hard, and has consistently been working hard. Next week is his finals week. He's got finals on Monday, Tuesday, Wednesday and one for Thursday that he is trying to reschedule. It will be a tricky week for sure, but we are so proud of Justin and his hard work.

Fun with Kim

We just had Justin's sister, Kim in town for the weekend. It was so much fun and we loved playing and visiting. We spent time at the hospital, at the mall, the nursery with the reindeer, and went out for burgers and ice cream. THANKS, KIM! WE LOVE YOU.

Maisy's latest

**This picture was taken two days ago. Some amazing person brought these beautiful hats to all the baby girls in the NICU.
On Thanksgiving day we went to visit Maisy with the kids before we ate our dinner. While we were there, her oxygen levels kept dipping down. Maisy hasn't been on oxygen since she was born, so they looked into it a little more. She sounded congested and they did some x-rays. They tested her for RSV and gave her a diuretic in case it was heart related. The RSV stuff came back negative, and Maisy started improving with the diuretic. She took several full feedings through that day and the next, which she hadn't done in several days.

The next day they did an echo-cardiogram (ultrasound exam of the heart) and found that her Ventricular Septral Defect (VSD) was letting a lot of blood cross-over from the left ventricle to the right. This was the thing the cardiologists had wanted to just check up on in a month. Basically, Maisy is going into congestive heart failure because her lungs are having to pump almost twice the amount of blood through them that they should. We knew this was a possiblity, but they didn't think it would happen so early.

It was a little bit of a process figuring out what that would mean for Maisy, but they've determined that they will have to do open heart surgery and fix her VSD before she is really going to thrive. The term open heart surgery and the whole idea of it makes me cringe, but the cardiologist told us that this particular surgery has a 99% success rate. They told us on Thursday that they want Maisy to get up to 3 Kilograms (6lbs. 10oz.) before they operate. Right now she is on continuous feeds to gain weight and is up to 5lbs.6oz. They anticipate that it will take 2-4 weeks to get her up to the weight she needs to be.

The doctor said she isn't ruling out the possibility of letting her come home to grow if she is doing really well, but they still need to see more consistency with her weight gain and her heart rate (which has been extra high). Maisy is on a diuretic 3 times a day as well, to help keep water off of her lungs.

How are we doing? We're holding on. I didn't mention this, but Maisy was transferred almost 2 weeks ago up to Fort Collins. It has made all the difference in being able to visit her. Our family, friends and ward members have been incredible. I've never had a need to have so much service extended to me. My wonderful mother filled our freezer (and fridge, and pantry), friends have been watching our children each morning so that I can visit our baby in the hospital, and Justin has been so selfless and supportive in watching the kids on top of all of his school work and tests so that I can visit Maisy in the evenings. The kids definitely have their "struggling with transition" moments, but have also been so good considering all that has happened in the last month.

In spite of this being one of the most challenging things I have ever faced, I have never been so enveloped in warmth and love and have been the recipient of so much christ-like service that I feel overwhelmed to tears just thinking about it. That includes the fasting, prayers, phone calls, blog comments, and emails from those who are far away. Thank you to everyone for your prayers and concern. We will post more about surgery when we hear dates or get more information.**My milk supply in the freezer. I've been pumping for the last 3 weeks. My freezer is packed, my fridge is packed, the freezer and fridge at the hospital are packed with my milk. Next step... breast milk donor.

As good as it gets

My mom is so great! With all of the blogging and updates about Maisy, I never blogged about how wonderful it was to have my mom here. She is truly wonder woman. She cleaned, she sewed, she cooked and baked, she shopped, she entertained, she comforted and she encouraged. We would have been lost without her (and still are a little bit). I felt like crying (and did) when I knew that she wouldn't even get to enjoy seeing Maisy at home. What a wonderful mother and nanny she is. I hope to be just like her. We miss you, mom!
Gunner fell asleep sitting up while my mom read him a story. Gracie is faking it.My mom took the kids to the children's museum in Denver. They had a ball.

Pictures

The kids wrestling in the hospital waiting room on Sunday.
Pretending to sleep on the waiting room couch. How big does Gunner look?

All pooped out. The tube in her nose is her feeding tube.

This is Maisy when I went this morning. She was so alert and we had fun hanging out. She'll be 3 weeks tomorrow. I will write an update soon... I promise.