Scrub a dub

Tonight turned out to be something special in the NICU, as I was able to help with Max's bath for the first time. I just haven't been able to time it to be there on a night when he was getting his bath. It's usually every 3 nights, but sometimes their body temp, procedures, etc... will change that schedule. Plus I'm usually home getting Ella and Alex to bed. But today, Alex was still running a fever, so I stayed home until Troy could get here after work.

When I showed up, Max was snoozing. I was able to hold him for about an hour and a half and he really snuggled right up to me. Then the nurse mentioned that he was scheduled for a bath, so I jumped at the chance to stay and help. He gets a sponge bath, since he's still on the CPAP, has a healing incision, ostomy bag, etc...

At first, I wasn't really sure how to do it, he was freezing and I was worried about keeping him warm, but once I grabbed that warm, sudsy washcloth, he seemed okay with mommy rubbing him down. I washed his head and face last, so he could be off the CPAP for a bit. He was all snuggled up in a couple of bath towels and his head was all bubbled with shampoo and he just stared at me and held my hands. It was priceless.

Stylin' Baby Max

Ella has her first client.

Today, the nurse called to tell me that Max was having trouble keeping his body temperature high enough. There was talk of moving him back to the isolette, but she wanted to try putting him in some warmer clothes first.

So Ella and I set out on a mission. Find something for Max to wear.

We had several bags of hand-me-downs, plus a couple of gifts people have given us, etc... I pulled out the smallest things I could find, all of them preemie sized. Ella picked the things she liked the best and one in specific for Max to wear today.

VOILA! Here's what we wound up with. Styling by Ella. Max was not please with the "getting dressed" process, but once he got into the clothes and got warmed up, he decided Ella and Mommy might know what we're doing. Isn't he just so grown up and handsome!?

Taste Test...

Max was beautiful and bright-eyed and spent almost a half hour off his CPAP today. He was breathing and gurgling and watching his mommy and I was in heaven!!! He had nurses and doctors and me all just in awe. Look how adorable he is! I know I'm his mom, so I'm required to think that, but just look at him!?!?!

























We've also started something new, along with the feeding tube breast milk, he gets "taste therapy." I put a small sponge on his tongue at feeding times, so he can get a few drops of the milk. He grimaced at first, but then he sucks that sponge dry! The boy knows when he's getting the good stuff.

His surgeon was by this afternoon and while they will continue to move very slowly with his continuous feeds through the tube, he was mentioning that we will try to start small oral feeds sometime in the future.







Meanwhile... it's rough at home, Alex is running a fever, it was 105 tonight and it was tough to find a sitter to come to the house for him so I could get up there. It's amazing some days how we're able to make it work. But so far, we're doing it.

SURPRISE!!!

Max is off the ventilator and on a CPAP mask!!!


The doctor made a decision this morning and said SURPRISE when I hit the door. So far he's doing really well. The best part for me is hearing his voice again. It's been WEEKS since we heard him cry. Music to my ears! His feedings via tube continue and he did lose a little weight yesterday, finally.

Not only has Max moved to the CPAP today, he graduated to a new big boy bed (open crib) and he is wearing clothing for the first time. (just a long sleeve t-shirt because of his IV port, ostomy bag, etc... but it's something) He just spent 2 hours snuggling Mommy and seemed under-whelmed by all the hoopla.

Oh! He also graduated to the next size of binkie... first it was white with a ventilator clip, then purple and now orange. We'll have a rainbow of sizes to keep for his time capsule.

Hands on

She waited 58 long days, actually longer if you count the days since Christmas morning, when Ella found out she was going to be a big sister, again.

She was thrilled, she'd been asking for another baby for months and couldn't wait to hold her baby brother or sister.

She had a great test run when Sophia's new brother, Jack, was born. Miss Kimmie was brave enough to let Ella hold him several times now and she's been just wonderful at it! She is gentle and slow in her movements. She holds him and kisses his head.

You could see it from her first days with baby dolls, how she cradles them in her arms and rocks them and sings to them and still doesn't go to bed at night without making sure he babies are all covered up and dressed in their jammies and tucked in. She really is quite the little mother.

So I guess one of the hardest things for Ella, aside from the fact that she's seeing much less of Mommy these days while I'm at the hospital, and that she's being passed around from friend to friend is that she hasn't been able to hold and hug and love and kiss or even touch her new baby brother.

That all changed today.

Max has moved to an open crib. The top is up on his isolette and he's swaddled in a blanket. He's accessible, and not separated from us by the plexiglass. Ella has been asking recently to hold him and kiss him and so when I had a mommy meltdown meeting earlier this week with the NICU Director of nursing, I asked.

She said Ella can hold his hand and touch him and help me when I hold him. And someday soon, maybe after he's off the ventilator, she can sit in the chair (with our supervision of course) and hold him. This is huge for her! Much like her mommy, Ella wants to do as much as they'll let her do. Daddy may not want to hold Max while he's on the vent, but Ella is raring to go!

So today, when we stopped by for a visit, Daddy lifter her up and she went in for her first touch. It was sweet and precious and a moment that I know I'll never forget. She was timid at first... not sure exactly how he'd feel, how he'd react... but then once she laid her fingers ever so gently on his head, she knew this is what she'd been waiting for. She stoked his head, told him "your big sister is here baby Max and I love you so, so, so, so much." I was trying to get a picture through my tears. Thank goodness our nurse, Jenn, had tissues close by!

She let Alex have a quick turn too, but he was more interested in hanging over the bed for a closer look at all the "stuff" hooked up to Max. He wasn't quite ready to touch, but he did want to be lifted up several times to see his baby brother. Ella couldn't get enough, she wanted to stay with me to hold him, but we'll save that for another day.

This was just the first, of many times we hope for Ella to make her own physical connection with her new baby brother. It's something I've dreamed of seeing and have been so afraid that we wouldn't because Max wouldn't survive. That fear is there, always looming because no one can give us that reassurance. Not just a fear for us, but for the kids. They may be little, but they already have such love for Max. He's part of our family, and their lives... even if he's not home.. YET.

"Day out with Thomas"

It was actually, just what we ALL needed. I bought tickets to the "Day out with Thomas" months ago, as a gift for Alex's birthday. THANK GOD! Because, his birthday, being on May 5th, just a couple of weeks after Max was born, was a bust. We took him with us to buy a couple of gifts and our wonderful Laura, threw him a party at her house that day.




It's one of the few times we haven't been up to see Max right away in the morning, and we missed rounds with the doctor, but it was good to have this time with the kids. Max was doing well, the doctor know how to reach us, and he even called my cell phone while we were at the train depot, with an update.



Now, for the fun... I know Alex peed his pants when he saw that train. Just look at his excitement. There is such joy in his eyes... he was squealing as soon as he saw the train, and when Thomas tooted his horn and started moving... well, just look at his face. This was well worth the price of admission. I caught myself tearing up a couple of times, just because he was so thrilled and we were able to be there with him and share those special moments.



It did rain, and sprinkle, and rain some more, and then POUR! Luckily, the strongest storm came through while we were in the tent waiting to board the train. It wasn't too hot, it actually cooled into the 70's and who cared that we were all wet and chilled, it was great family fun!




HAPPY 3rd BIRTHDAY ALEX!!!! Better late than never...

Let the feeding begin!

Max and I had a morning snuggle, so he could start his feedings at noon. He's getting less than a teaspoon per 4 hours via a feeding tube, but it's a start. He also had his first serious poop in his ostomy bag. Gross, I know, but it's exciting around here to see the plumbing finally working!




Here is a picture of his ostomy bag... minus the poop...





They've opened up the top of his isolette for a test run before the open crib. Next blood gas at 4p.m...

He had a blood transfusion yesterday, which has really pinked him up. They are working to wean the ventilator, but he is still having secretions out of his lungs and mouth, so some hold-up there. They are checking for an infection, as well as a possible yeast infection which could be to blame. So far, nothing has come back positive. He's on 3 antibiotics post-surgery, so that should cover him pretty well.

Thanks to Jamie who hosted Ella for a sleepover last night. Ella just blends right in with her 4 girls and it was a nice break for Alex, who had Mommy and Daddy all to himself. We took him to eat Mexican for dinner. Mommy and Daddy REALLY needed those margaritas!!!!