Miriam is now three weeks post-surgery, and doing great. She still has scabs from the major incisions, but the new skin that is forming is pink and healthy. Her energy level is nearly back to where it was before surgery. She has made lots of trips out of the house, including even some very active visits to the playground! One of her favorite outings was to the Mardi Gras party hosted by Regina Mater, a Catholic home school cooperative very dear to the hearts of Miriam’s grandmother and Godmother (and a source of powerful prayers during her surgery!). We wanted to share a few photos from the party with you to show how well Miriam was feeling just two weeks after surgery.

She is getting stronger every day! Thank you for your continued prayers!

Miriam went to visit Dr. Williams today to check on her recovery. They took another X-ray, which showed that all of the fluid that had collected in her chest cavity is gone. Dr. Williams also estimated that the angle in her back caused by her scoliosis has dropped from above 45 degrees pre-surgery to about 7 degrees now. All of her bandages are off, except for a small band-aid covering the scab left from her chest tube. She can resume taking showers and playing as much as she has the energy to do.

She has been weaning off pain medication, but still needs some here and there to cope with her soreness. She is still cautious about climbing in and out of chairs and bending down, but overall is moving much more freely than a week ago. Her devices make some visible lumps in her back, and there is one prominent lump on her front where the rib that moved the most in the adjustment has pushed forward. Dr. Williams is sure these cosmetic issues will diminish as her body grows. She is still tiny (only 36 inches)!

We will return for another follow-up in six weeks, and he anticipates her first expansion will take place in August. Overall he is very happy with the success of the surgery and with how well she has recovered. We are very grateful for these things, too!

Miriam continues to get cards and packages almost every day. Thank you so much to all of you who have sent her something! She and her sisters know they are loved by friends all over the country and the world (and so do we)!

Miriam should be headed home this afternoon! She had a rough night with Daddy (Mommy went home to sleep for a few hours), but we think they have her pain meds worked out now so hopefully we can avoid another night like that. She is sleeping deeply now, and once she wakes up we have asked physical therapy to come and get her up and moving. With the chest tube in, moving was uncomfortable, so we’re hoping now that it’s out and she is rested that she will be ready to play! Once we see she is able to get around on her own we will be discharged and get out of here!

She’s awake! While we wait we open one more package and do some coloring. Thanks, Great-Grandpa Dave and Great-Grandma Sally!

Mr. Doug from physical therapy arrived and helped Miriam take her first walk around the hospital. She made it down the PICU hallway and all the way out to the courtyard by herself (with the help of her magic wand)!

Cecilia and Grandpa came to help Miriam get moving. Cecilia was so happy to be with Miriam (and see all the fun presents she got)!

As soon as we were dismissed, Miriam got into her new princess fairy regalia thanks to Grandma’s cousin Patti and Mommy’s friends Becca and Jason.

We stopped in the chapel for some grateful prayers of thanks, and then headed to the playroom, where the girls took care of dolls and did some imaginary shopping (and parents forgot to take pictures).

And now we’re home! Miriam has done well so far. She has climbed on and off her bed and the couch, and done some reading and coloring. She is in noticeable pain if her medication starts to wear off, but is quickly back to herself when she gets another dose. Hopefully she will wean off over the next week.

Thank you all again for walking this journey with us. We are so grateful for all of your prayers, as we know they have protected and strengthened her and us through the trials of this week. Please continue to pray for her recovery, and we will continue to update you. She is adjusting to a body with new proportions and healing some major incisions, so your support is still a gift. She will be having her first expansion of the VEPTR devices sometime this summer, but that should take only one or two days it the hospital (and will have a much easier recovery).

Can’t believe it is already Friday!

Miriam had a very restful night last night. And so did mommy and daddy. Daddy slept at home for ~6 hours while mommy slept with Miso and had the most sleep yet. (She slept a little at home the previous night and got to spend time with Hildi and Cecilia).

She had an early morning X-ray before both doctors visited. They and the radiologists were very happy with the progress on the chest tube. It is now off suction and if that goes well the plan is to remove it after lunch! Then she will move out of the ICU to a new room, and Dr Williams thinks she can go home as soon as tomorrow! We thought we still had a few days left.

We spent the morning with Pappateaux before he had to go to the airport to fly back to New York. They drew some pictures together.

She continued to perk up all day, and napped often. First she asked for Daddy to nap with her:

And later she wanted her Mommy:

We got to video chat with Aunt Bekah and Kate! Kate showed us her Sleeping Beauty ballet, which was remarkable for not featuring any sleeping for all the beauty.

In the late afternoon they began to get ready to remove her chest tube. Another X-ray showed further progress in the draining, and the cavity sealed nicely. So the surgeon removed the tube and her “pain ball” (a small local anesthesia which had been washing over her incision area). Then came time to remove the central line in her neck. Even though this should have been the easy part, it ended up a little more tricky…

Miriam did not like the nurse pulling on the stitches and the mounting holding the tube in place. Plus she really needed to poop, had just had the tubes removed, and was getting pretty tired in general. So she cried quite a bit. With all the distress, the site where the chest tube had been began to fill up the bandage. There were some tense moments while we finished removing the stitches in her neck and tending to the wound (which was not expected to bleed).

We got the bandage changed, the surgeon and trauma PA came back to take a look, change the bandage again and get a chest x-ray to double check the inside. It looks like the chest tube had been blocking a bit more of fluids and blood from the procedure that had not yet drained (part of why they flushed the anti-clotting fluids in yesterday), and her motion/crying/coughing loosened it enough to drain. The chest x-ray showed that there was indeed less fluid and, more importantly, no air in the cavity. There was also no indication that there was any bleeding or injury internally (confirming the assumption based on the color of the fluids).

So we had a few traumatic hours there, but she is doing really well now. We’re remaining in the ICU for tonight as a precaution for monitoring, but after a few hours of checking, everyone is still thinking she could go home tomorrow. We’re definitely not anxious to leave. We would rather Miriam have a better memory of the hospital as her last experience, and we want to make sure she has sufficient movement, strength, mobility, and independence before we leave.

But speaking of… after all of that (and after dinner), Miriam said she needed to go potty and walked to the potty (with Daddy just holding her hands) and .. um … was … let’s just say very successful. Very. But that is very good news. She has felt much better since and is playing and talking now, even though she knows she needs to go to sleep.

I have a feeling she’s going to be very playful tomorrow. We’ll visit the healing courtyard (below) and the playroom, and maybe Cecilia and Hildi will join us. Mommy is going home to sleep and Daddy and Miso are ready to rest too.

Miriam slept well last night after watching all of Cinderella. This morning she had more respiratory therapies and another PT session sitting in a wheelchair. It was very exhausting for her, but she was excited for the change. While we were sitting up we added some of the new cards which arrived at the house in the last few days. We actually opened them yesterday (I think… Daddy’s brain has checked out).

And then she helped stick them in the scrapbook. This is good exercise for her arms and torso, and made her very happy even when she asked daddy to finish the rest.

All this activity made her pretty tired, so Miso and mommy are taking a nap now. (Enjoy the picture while you can, mommy might make me take it down when she awakes.)

On the medical side, we’ve hit a hiccup with the chest tube. There appears to be fluid in her chest that is not draining. They have been trying a few different things to get it to drain, but if these do not work, she will have to go back to the OR later today to reposition or replace the chest tube. This would mean starting over the recovery process a little bit, though it would definitely be a little easier since the main wound continues to heal. We do not expect her to move from ICU today, as originally planned, but that might be for the best so that her back has more time and attention to heal.

We will keep you posted, and please keep the prayers coming.

UPDATE: After reviewing the X-rays (with a few additional eyes) Miriam’s general surgeon is satisfied that there is not significant fluid build up in her chest. Her lung has still not fully expanded (which is expected), but he sees no need for additional surgery! They will do an anti-clotting treatment on the drain to make sure anything else hat wants to get out can. She just needs to keep up the respiratory therapies. And the more she can sit up the better.

We added a few particularly appropriate topics to the “teaching needs” section of the board to help with the draining…

Grandpa got Miriam a puppy slide whistle, and Daddy brought bubbles and a kazoo. She likes those better than the breathing mask.

And Miss Emily (her Child Life Specialist form surgery and one of her bestest friends) came by to visit!

At 6:00 she finally had her anti-clotting treatment for her chest tube. They were backed up in surgery today. But she tolerated it very well, and even the initial X-ray at 8:00 showed improvement. It takes at least overnight for full effect, but that is very encouraging.

Pappateaux and Abeea came by after e treatment with tons of packages and more cards.

Pappateaux has to leave Friday afternoon. Today he took Cecilia to the Half Price Books and IKEA and Mighty Fine. She is having so much fun.

Miso ordered dinner and had her second full meal. She even fed much of it to herself.

She has a normal appetite and has no dietary restrictions, so she can eat whatever she wants. And that meant a chocolate chip cookie after dinner.

Miriam had a very good night. Lots of activity, but she was very restful in between. Mommy and Daddy each got to lie down with her and hold her for a little while. Overall it was much better than expected.

Her surgeon came by in the morning and was pleased with her progress. He said she’s actually about a day ahead. She will get more frequent respiration therapy to encourage her right lung to continue to expand. And she will get to sit up today, which I think will make her happy. It will help her lungs as well.

The next big milestone will be to remove the chest tube, which will decrease the irrational to her lung and diaphragm. That is also part of why her breathing is still shallow and fast. Removing it will also give her greater mobility. That process will start today and hopefully it will come out tomorrow.

Now she is having her teeth brushed, which she likes. And the she will get to have some juice. That got a big nod and smile when it was suggested.

It was a big and busy morning for Miso. More respiratory therapies and she got to get out of bed for the first time and sit in a chair. She smiled really big when the physical therapists asked her if she wanted to get up. It was very exhausting for her, but still very exciting. She sat on her own without support and even stood up for a minute.

Then she played with her leappad for a long time. She’s weak and tired, but very much herself.

Finally got that Popsicle!

At 7:00 Miriam woke up as perky and talkative as she has been yet. She talked about all kinds of things and seemed surprised (and relieved) that her surgery was already done! She asked to see her book with all the cards, and we read that for a while.

Later, she had a visit from some Dominican sisters who beautifully sang a Gregorian Ave Maria for her. Miriam was very shy while they were here.

She did very well one her next few breathing treatments, and we are still waiting on word from the doctors about progressing her chest tube.

When she got sleepy and began fussing again, I brought her the new quilt Abeea made and put it on her legs. She reached down and pulled it all the way up to her chin.

Guess she just needed an Abeea hug to go to sleep.

Miriam had a very good first night. She was monitored for some secretions in her lungs and a minor fever, but these are expected things and there is no cause for concern. She also had some percussive breathing treatments to help break up the stuff in her hulgs, and by 4:00 am her lungs looked/sounded clear.

Her surgeon came by at about 8:30 to check her out, and he said all of her labs and numbers look really good. She continues to be a big strong girl.

The best news is that over night all indications pointed to being able to remove the breathing tube today. Dr Williams agreed, and they started that process right away.

As of 10:00, she is breathing almost entirely on her own (she still has the tube in, and it is assisting with just enough pressure to cancel out the added difficulty in creates.) She is in a test phase with her sedation medications cut in half and breathing on her own to make sure she can handle that. If all goes well, they will remove the tube today and take her off sedation. So you can expect some more photos and videos when that happens. (We are limiting the photos while she has the breathing tube in so that hopefully when she looks at these posts in the future, that part of the memory will not be reinforced.)

Oh, and we changed her “Teaching Needs” on the board in her room. This was yesterday:

And now this is for today:

Silly parents.

Noon update. Grandma and Grandpa are here! Abeea and Pappateaux stopped by early and then traded with them to play with Cecilia and Hildi. So both grandparents have seen her awake now.

They are about to cut the sedative entirely so that they can remove the tube as soon as she is stable and awake on her own. She really does not like the tube, so this will be a little rough. But the dietitians stopped by and she is go for a popsicle as soon as the tube is out!

No more breathing tube!

The first thing she said she said was “cut cake game” and “rainbow cake,” references to the iPad game she was playing in the pre-op room. She fell asleep before daddy got it downloaded.

She got to play it next time she woke up. After a little while she started to get restless. Turns out she wanted to be done, but needed to wash the dishes (the last step in the game) before it was taken away.

She’s going to have a rough time for the next day or two as her body continues to take over. She’s sleeping much of the time, but when she’s awake she is very wiggly and tries to get up on her hands and knees. She broke one of the catheters rolling over. She says she is “uncomfortable” but not in pain. And she just said, “I want to take my tubes out.” We anticipate this to be the status quo for the next day or two. So it may be a long night sitting up with her.

No popsicle yet, unfortunately. She attacked her Tylenol and asked for a “sip,” and she will start to get fluids orally once she is a little more consistently awake.

Checked in at 5:30 am on 28 January. We’ll be updating this post throughout the day with progress…

Miriam was a wonderful girl this morning. Mommy and Daddy even forgot the doll she picked out to bring and she didn’t let it upset her at all. Actually, she got pretty hyper when she saw the waiting room. She told us what everything was (giving us the tour now). And she started looking for Miss Emily, the Child Life Specialist who has been working with her. She is one of Miriam’s most favorite people now.

Abeea and Pappateaux arrived in time to accompany Miriam back to her pre-op room. That made her very happy:

But it was still before 6, so she was still sleepy:

At 6:45, everything is ready. Miriam is surprisingly excited and very happy. She’s wearing an inflatable gown to keep her warm, which has calmed her down. Plus she’s had some relaxing medicine, so she’s ready to go.

She was very peaceful as the surgeon came for the last checks.

And she was very loopy from the medicine when she rolled over to the stop sign and kissed us all goodbye.

She was in surgery by 7:10. They anticipate about 6 hours for the procedure, so we should get to see her again around 1:00 pm. Depending on how it goes she may be awake then, or they may keep her sedated if she needs to keep the breathing tube in.

We received an update at 9:00 that all of the prep went well and they were underway.

Nanna Kathy (Miso’s Godmother) came by to visit in the morning.

There were a few more intermediate updates and everything has been going well, no changes, nothing unexpected.

Around noon, Grandma and Grandpa Fairweather arrived, having helped Cecilia and Hildi wake up, have breakfast. One of their favorite babysitters came to stay with them so Grandma and Grandpa could be with Miso as she comes out of the procedure. So all of the grandparents are together now.

At 12:20 we were paged back to consult with the surgeon…

1:30 and she’s done! The doctor said it went really well, she was “perfectly stable” throughout. We knew she was a good, strong girl. They were able to do more adjustment than expected, which is really good news for the long term and short term. It does mean her recovery might be a little longer and rougher, but she’s doing really well. But that also means her spine is nearly straight! Here’s the ago to of the after X-ray with the devices in place.

As part of the procedure, the doctors separated a mass of bone where three ribs were fused together, resulting in two full ribs and a third floating. They also were able to separate some of her vertebrae, which really helped with her scoliosis. It also allowed her rib cage to expand both vertically (as expected) and laterally, further increasing her potential lung volume.

We’ve moved into the PICU and she’s still getting settled in with all her tubes and medicines. She was awake when we first came in; she looked uncomfortable, but not in great pain. She responded to our voices and seemed like she really wanted to tell us something. She will have the breathing tube for at least the next day and will stay in PICU for at least two days.

The myriad tubes will start to come out tomorrow, and hopefully the breathing tube will go at that time if her lungs and chest muscles can take over. Daddy wants to hear her perfect little voice again soon.

Jason’s Aunt Mary surprised us by coming to the hospital to help as well. We are so blessed to have such a loving and supportive family.

Daddy got to sit with her for a long time in the afternoon and listen to some relaxing music (Arvo Pärt, William Byrd, etc). Rachel came by for a visit, and a package from Kate and Jack arrived with ballons.

As the nurses were making some adjustments to her bed and some of the equipment at about 9pm, Miso woke up a little more than she had been. Mommy and Daddy talked to her and sang with her and she responded. The nurse asked Miriam if she would like her Clara doll (that Pappateaux brought her) and she nodded her sweet little Miso nod. It was the first interaction that really looked like herself. And she acknowledged that her grandparents had visited earlier, and indicated she wanted to see the balloons from Kate and Jack.

She also wiggled the little Infant of Prague statue in her hand. We asked if she wanted to hold it and she said no. We asked if she wanted to give him a kiss (as she often does) and she nodded. So I held it to her face and she made a little pucker, even with the tube in.

As she woke a little more, she began to be irritated by the breathing tub and some of the things attached to her hand, so it was time to give a little dose of medicine. Now she is sleeping soundly and peacefully. And so will Mommy and Daddy in just a few minutes.

Thank you everyone for prayers and messages and love and support and gifts and visits.

We’ll see you tomorrow!

Miriam’s Godmother Kathy Kanewske took her (photo) to the Texas Rally for Life today. Why? Because before Miriam was born, at her 20-week scan, the doctors at the imaging center strongly advised us to terminate. (Read the full story at Be Not Afraid). The current treatments have nothing to do with the prenatal diagnosis; her thoracic issues were not seen on the sonograms, and the issues they identified have turned out to have had no impact on her growth and development.

Ramsay family members are holding the image in this photo.

We took some reference pictures this morning to compare before and after the procedure. Here is Miriam’s back currently. You can see how her spine and ribs impact her posture a little bit, especially when she turns to the right.

Her spine is curved to the left, so you can see a bit of a hollow where it should be between the shoulder blades. When she stands straight, her left shoulder is higher, but she seems to compensate for it at times.

Most of the time there is nothing noticeably wrong with her posture (with clothes on). But you can see what’s going on inside on the outside, and it would only get worse without intervention. The first time I noticed the hump forming on the left side was another indication that her condition was getting worse and that surgery would probably be needed in her future.