Bittersweet

Apparently when you are only five weeks old, you need your caffeine too! Mighty Mouse is doing good. They checked her caffeine levels yesterday and they were low, so they started giving her caffeine. The caffeine apparently helps her keep her breathing and heart rate staying on course - not sure how to explain it, but it helps. So today has been a good day for her.   I wonder if she will grow up liking C*ca Cola, tea or St*rbucks.

Our littlest one is doing great!  They extubated her yesterday afternoon and then placed her back on CPAP and they said last night she was doing wonderfully.   Her color looked great and she is having fewer episodes of highs and lows and staying in the middle where she should be.   Her feeds are back up to 6 cc an hour.   Daddy went to see her yesterday and he agreed that she is looking better and is starting to look more like a real little baby girl.   It wasn’t so scary for him to see her.   Mouse is getting quite the fan club at the Baby Factory (as Daddy calls it).   I guess because she is so cute and sweet the nurses adore her (from what they say most preemies aren’t too cute, but because Mouse has so much hair and isn’t a complainer, they love her).   Those nurses are incredible people, I couldn’t do their job.  I’m glad they are giving such incredible care and love to our little one - and to us parents too. 

Here’s a picture before they extubated her yesterday.

Here’s our dear Miss Bug in her party dress on Sunday…

Yes, that is Grandma K in the background.  She is going home today and I think Bug and Grandma are really going to miss each other.  They have spent a lot of time together since November.  Hopefully Mommy won’t fall apart again, so the next visit with Grandma will be for fun only.   Grandma K has been a huge help - she keeps us in line and in clean clothes!  I think if I fall apart again, it might require a psychiatric admission!

It’s amazing that a tiny being’s physical existence can be measured in a tablespoon of ashes.

It also breaks my heart that it can be measured by a mere tablespoon of ashes.

Mouse is doing great today - she gained an ounce, the haziness in her lungs is starting to clear, and they are working on weaning her off the vent and hopefully get her onto the CPAP again by Monday.   Today for her chest PT, they lifted the lid of her incubator up to have better access.  I had a whole 15 minutes of unobstructed, all to myself view and access to my littlest one.  I chatted her up the whole time.  I touched her some, but she already had quite of bit of physical contact with the PT, so she wasn’t too happy to have her hair stroked.   She allowed some, but she would frown when she was done.   She opened her eyes a lot.  I wasn’t thinking and didn’t get a picture of them open all the way, but did get them slightly open when was she tuckered out at the end of my visit. 

Imagine being a month old and having a wild hair day - it’s true.  Mighty Mouse’s hair was actually kinda wild looking.  Maybe not so much in the picture, but it was definitely midlly wild.

The resident, who looked only slightly older than Bug, said that Mouse had “turned a corner” and was doing great.   Her lungs still look a bit hazy and have sections that don’t expand very well, but with what looks like a nice massage, suction, and positioning, they think all will be well soon.  They also gave her another blood transfusion.   I was able to touch my little girl today, stroking her little forehead a bit and they let me wrap the blanket around her after  the physical therapy!   After wrestling with Bug just to get jammies on and playing with her, I was scared to even wrap the blanket around Mouse.   It felt good for my Mommy heart to do it though.   I dreamed the other night about giving Mouse a bath and washing her hair - someday  it will happen.

 
For those who didn’t know Bug is wearing a helmet, she is.  She has to wear it 6 to 7 months, 23 hours a day, to help correct the flatness of the back of her head.   We took the “Back to Sleep” campaign for SIDS too serious and always had her on her back, so now the helmet will help round it back out.  It’s mostly for costmetic reasons, but we are seeing other benefits too.  Like when she tries to stand up, slips and bonks her head - no problem and no tears cause she has her helmet on.  The helmet doesn’t seem to bother Bug at all, it’s light weight and cute too!

Mighty Mouse turned one month old yesterday!  She’s still recovering from surgery and has that haziness in her lung, but seems to be doing okay.   I went up to see her about an hour after I got out of the hospital.   First thing the nurse said was that I looked “lit”, um…I was lit!  I was functioning only by the help of pain medications.  I was determined to see my littlest one.   She has grown!  Maybe not in weight, but looks bigger to me.   Her little chipmunk cheeks are fuller because of the fluid from the surgery and her little tummy is distended from being constipated.  Her lung still has a little bit of haziness to it on x-ray.    It was just so good to see her!   The pain meds make me very chatty, so I was full of questions for the nurse and talked my little girl’s ear off.  

My other little girl was excited mom was home too.  When I picked her up from daycare, she had a huge grin and crawled over to me at turbo speed!   She looks so different with her six teeth!   She also has been talking up a storm at home tonight - I thought I was chatty!

My other two furry children are excited about everyone being at home too.   Cooper has had the zoomies and is stealing everything in sight and Missy has been wiggling and woohoooing all over the place.   It’s good to be home and it’s good to be so loved!

You people are amazing - Thank you again for all the thoughts and prayers. We really couldn’t make it through all of this without the support of our friends and family (and of course God - nothing like a major whatever you want to call this experience to realize who you need to lean on).

I just got my okay to go home any time I’m ready - whohoo! Just got to remember to not over do it - HA!!!!

Mighty Mouse had her surgery today at about 11:45 a.m. and came through it with flying colors!!!   The nurse said they can no longer hear a murmur and the benefits of surgery should take effect immediately.  This means her poor little heart won’t have to work so hard, her lungs will be given a chance to work they way they were meant to, and her feeds and growth should get better too.     We got some good news on a few other fronts that will make life a bit easier for us, so today is turning out to be a good day.

Nana will be in the hospital for another day or so - she has pneumonia, bronchitis, and some other kind of infection, so she isn’t feeling too great.   Grandma K better stay healthy!  Somebody has to take care of us all!

It wasn’t a good evening last night. Mighty Mouse had another major apneic episode where they had to physically stimulate and bag her to get her to breathe again. I called after I got back from surgery and they said this happened about 4:30, just after I called, then left for surgery. I also found out they plan to do the surgery on her PDA this morning about 8 a.m. The cardiothoracic doctor will call about 6 a.m. to explain everything in detail and to get consent. Even though they do this procedure frequently, it still scares me. Please pray for her this morning.

We are so thankful for all our friends and family who have been praying for us and helping us through these past few very difficult months.  We couldn’t have done it without you. 

I called to check on Mighty Mouse one more time before I left for surgery.   They did an echo on her yesterday and found out that her PDA is wide open now.  This means that her poor little heart is working overtime trying to get blood where it needs to go.  What happens is with the PDA open, a lot of blood goes to her lungs instead of to the rest of her body, so her heart is becoming enlarged from all the work.   The cardiothoracic guys are planning on doing surgery on her to close her PDA either tomorrow or the next day.  I knew this was coming, but it’s still scary.   They will do a small incision between her ribs and go in and suture or clip the PDA closed.   While it is a “standard” procedure, it still has its risks.   It’s really hard for me to be here and not there.   I know she’s so little that she doesn’t really miss me, but I know and I want to be with my little girl before and after.   I’m glad she is going to have this done and maybe now she will be able to have an easier time at life.