Then and Now

From a year ago....

23 Weeks and counting – November 5, 2008

Where did the time go? Last night Henry asked me how far along I am. I answered 23 weeks. "wow," I said, "that means there's only 17 weeks to go." Then it hit me, they are talking about taking the baby 2 weeks early, that means 15 weeks to go. Ok, that's gonna go by quickly and then life will be turned upside down. Anticipating baby boy will live, I'm thinking of all the things that will have to happen once this baby is born. Pumping, visits to the hospital, logistics for the girls, living away from my baby and always feeling like the girls aren't getting what they need. It's going to be a long, hard road. I'm not ready, but it's certainly better than the alternative.

Update: 

Pumping - still pumping! every three and half hours or so. I can't believe it's been eight and half months. People are starting to comment about what a great thing I'm doing and I'm starting to relate to all those people you see on t.v. who are called heroes. Honestly, it's just something on my To Do list. I do it, don't think much about it. There are a lot of moms out there who would and do the same thing every day. No kudos necessary. 

Visits to the hospital - Driving to the hospital almost every day is taking its toll. I am a stay at home mom who now commutes to her job. The silver lining is I am now more educated on the 1,990 pages of the proposed house bill on health care and the war in Afghanistan. 

Logistics with the girls - With the start of school, logistics are a bit better. They have a designated place to be Monday, Wednesday and Friday. And now, with their being allowed back in the hospital, it will be easier. 

Living away from my baby - This has to be the toughest part of this whole thing. I miss Ryan. I miss holding him. I miss taking care of him. I've had to release control of his nurturing right now and it is difficult. 

Meeting the needs of everyone - This is impossible. We are coping and that's all I can ask for right now. 

Seven Quick Takes

For this week's seven quick takes, I give you Confessions of a Stay at Home Mom. These will solidify in your minds that I put my pants on one leg at a time just like you! Enjoy. 

1

These are my exercise clothes. They have been sitting right here in the hall since Sunday night. I am going on two weeks of not working out... my body is tight and sore... my punishment for not working it out. I hope to resume my activities next week. And to save myself time, I think I'll leave those clothes right there all the way through the weekend. 

2

My dresser does not fit in my room and even if it did, I'm not sure this would change... these are my pants. I take them off at night and hang them on the towel bar. The t-shirt and sweat pants on the right are my pjs. Pants go on the towel bar, pjs go on the body and vice-versa in the morning. I have no excuse, just pure laziness. 

3

This is my tennis shoe. It is sitting on my front porch. I managed to step in animal feces Wednesday somewhere between my yard and my neighbor's yard. Neither of us have outdoor pets so I'm not sure who the culprit is. What I do know is that the last thing I have time for is ridding the tread on my tennis shoe of poopy. I am unsure how long this shoe will sit here, but I'm guessing it will be into next week if not longer before I move it to the garage and then maybe address the issue. I'm hoping nothing takes up residence in it before then. Hmmm, I might turn it sideways in case it rains. 

4

Ryan's room is our new storage room. It's a mess. I would take a picture of it but unfortunately it does not have a working lamp. The one I used from the time Natalie was a baby shorted out and I have yet to buy another one. Since Ryan doesn't live here, I can live in denial that I need to spend the money on a new one. As of now, we only use the room during the day to iron our clothes. On dark mornings or overcast days it's questionable that our clothes are ironed well.  I think we should count this one as two since storage and lamp are two different issues. 

6

This is a stack of books I would like to read. This does not include my official reading list. These are books I've found at yard sales and book sales that called my name. I have a similar stack on my nightstand. 

7

These are my flower pots. They have weeds growing in them. They've had weeds growing in them for, um, about twelve months. Okay, that's not true. The plastic one is the gerber daisy pot my mom gave me when Ryan came home in April. It bloomed for awhile, but then died from neglect. But the rest of them haven't had flowers in them since last summer. I guess I can recycle that plastic pot... can I count that as an 8th confession?

If you're brave enough, confess one (or more) thing on your 'to do' list. 

THE Visit

When Natalie saw Ryan today she said, "He's bigger than he was before." 

Our visit was a little weird as we were in and out a few times due to some things happening in the bay where Ryan is rooming right now. And then he desatted into the 40s with a high reading of lactate in his blood gases so after a little bit of intervention we spent some time watching him (as in, the nurses and me... the girls continued to play obliviously). 

Overall though, it was a great visit. The nurse said Ryan had a fussy morning and he was throwing a tantrum when we arrived. Within 10 minutes, he was resting peacefully. After a quick hello and the obligatory picture, the girls set up shop as if they'd never left. 

Today is the Day!

Ryan is still holding his own off the CPAP machine. He continues to have high flow oxygen support on a setting of 12 liters/hour at 80%.  His x-ray looks good - even better than before with his right lung showing good air flow. His O2 saturations are sitting in the mid 70s and PO2s in the 30s. Perfect!  They hope to wean his high flow to 10 liters/hour at 60%.  

I'm excited because today is the day the girls are allowed to return to Ryan's bedside. They are so excited. When I told Natalie she said, "Did you tell Ainsley the news? Did you tell her yet?"  Nope, I said. "We have to tell her now!" she said and ran from the room to find Ainsley. 

Here are a few pictures and videos for your viewing enjoyment...

Ryan devented (is that a word?) and looking pretty.

Dressed in his big boy clothes. 

Falling asleep with mommy. 

Sorry you have to listen to two minutes of me talking, but if you're patient, you will see Ryan smile twice! 

Ryan sitting up:

Ryan

Ryan was extubated late yesterday (Tuesday) afternoon to see if he can breathe on his own after last week's heart catheterization.  As of 8:45 this morning, he is still ET tube free and his gases are holding steady. He remains on high flow oxygen (at a setting of 15 liters per hour, down from the 20 liters per hour they started him on). For those unfamiliar with supplemental oxygen, 20 and 15 liters are high settings.  For a comparison, when Ryan came home for two weeks in July he was on 1.5 liters of oxygen per hour.  The team will continue to assess his numbers and try to wean his oxygen  s l o w l y  to give him the best possible environment to succeed. 

If Ryan is unable to tolerate the weaning, we will continue talking about some sort of intervention, i.e. plication of his diaphragm or a tracheostomy. 

I will try and update as the day progresses as to how the little guy is doing. 

Natalie

When I was pregnant with Ainsley I read a book about sibling rivalry. I don't remember that much from the book, but I do remember two things. The first was that much sibling rilvary can be avoided by encouraging kids to work as a team to get things done instead of saying, "Let's see who can be the first to..." or "Let's see who is the fastest."  Makes sense, right?

The second was that sometimes you just need to help a child verbalize her feelings and assure her that you still love her.  I did this successfully with Natalie when Ainsley and I came home from the hospital and Natalie seemed jealous of all the mommy time the new baby was getting. 

This past Saturday, I used this method again and was shocked by the quick result. 

I woke up early in the morning (7 a.m. is early for me) and started getting ready to go down to see Ryan. Natalie came into the bathroom and asked me why I was in the shower. A great question since it was still dark outside. :)  When I told her I was going down to see Ryan she immediately started fussing and saying that she didn't want me to go. I first tried the tactic of explaining to her how logical it was for me to visit Ryan in the morning so I could be back for the afternoon/evening festivities. "But you'll miss the treating." she whined. "I'm not going to miss the Trick-or-Treating, sweetie. I'm just going for a few hours. I'll be back before you know it." I tried to sound chipper, but she wasn't biting. 

A little while later I was putting the finishing touches on my makeup. Ainsley was puttering around me in the bathroom and Natalie must've noticed how happy we were. "No one will play horses with me." she cried. She was practical writhing around on the floor with jealousy. After a few minutes of this Ainsley offered to play with her. "You're too late." she snapped and then continued complaining that no one would play with her.  Annoyed with her behavior I snapped at her - "Don't refuse to play with your sister and then complain no one will play with you."

I finally looked at her and said, "Natalie, why don't you just say what you're really upset about..." I hate to admit I didn't say it very nicely or very chipper. I said it pretty harshly because I was sick of all the whining. 

She looked at me quizzically. 

"What are you really upset about?" I asked again.

"Horses?" she tried meekly. 

"No. You're upset that mommy is going to see Ryan and isn't staying here with you this morning. You feel like you didn't get to see me yesterday because you were in school and now you won't see me again this morning. You're upset because you can't come with me and you haven't seen Ryan for a long time. You're upset because he isn't home yet and has to stay in the hospital. And guess what?  I am too. I hate that I can't be with my kids all at one time. I hate that Ryan can't live at home with us. But I want to go to see Ryan and I want to go this morning so I can come home and be with you the rest of the day because I miss you too."

I pulled her onto my lap and hugged her tight while I was saying all this. I kissed her hair and her cheek and probably said 'I love you' several times. 

And wouldn't you know it. After that she jumped off my lap, stopped whining and went to play with Ainsley. I don't remember her whining the entire rest of the time I was getting ready and when I left she sweetly said, "Bye, mommy" and went back to playing. 

It was so weird. Just like when she was a toddler and I told her how much I still loved her even though we had a new baby in the house, she said nothing. She never affirmed vocally what I was saying was how she felt. She never made a peep. She just listened to what I had to say and then radically changed her behavior. It makes me such a strong believer in looking beyond the behavior to the feelings (whether with children or adults).  

Have any of you ever experienced something like this?

Halloween - A Review

I don't even know where to begin. So I'll start at the very beginning... a very good place to start. When you read you begin with ABC, when you sing you begin with do-re-me. 

Oh, excuse me, I got distracted. I am not Julie Andrews and I am certainly not nanny to six children. I am, however, a mother to three lovely children. One of whom spent Halloween in the hospital away from his family. I'm starting to dread holidays. And let's be honest, on a scale of 1 to 10 of important holidays, Halloween is about as important as Grandchildren's day (sorry to all the grandchildren I just offended). 

That did not stop me from crying to and from the hospital at the thought that we were going to be making family memories without a vital piece of our family. Ryan didn't seem to mind... here he is in his holiday duds. As the nurse and I struggled to get his onesie over and under all the lines and tubes coming from Ryan's little body I explained, "Ry-Ry, this is a t-shirt. Most people wear something like this every day to keep themselves warm. It's made out of cotton."  

Ryan hasn't worn clothes for 6 of his 8 months and I sometimes worry he will think it's normal to run around with only a diaper on. But, I'm getting ahead of myself. First, we need to work on breathing, then we'll work on modesty.  

I returned home at lunch time and set about icing Henry's birthday cake. Henry shares his birthday with Halloween (bwaa-ha-ha-ha-ha). I asked him if he wanted to celebrate it another day so he didn't have to compete with Trick-or-Treating but he prefers to do it the same day. I don't blame him. Here are the girls icing his cake. They did a pretty good job of it. 

With the finished product. They both have icing on their face. 

We sang Happy Birthday and then the girls helped Henry blow out the candles. 

We ended the evening by going Trick-or-Treating. The girls chose to be medical professionals (surprise!).  Natalie was a nurse and Ainsley was a doctor. 

Natalie walking in the costume parade.... you may remember she won a prize last year for Most Original costume. She really wanted to win another prize this year (she didn't). She talked about it while getting dressed and while getting out of the car.  They didn't give out a Most Original prize this year, but they did give out a "Cutest" trophy. I stood there wondering how that made all the other kids feel to single out one child (who happened to be a baby under a year old who didn't care at all that she was the cutest) as the cutest. Doesn't that indicate the others aren't as cute? 

Here are the girls getting candy... (sorry they're blurry, I think our flash didn't go off)

When we got home, Natalie divided up her candy and gave out what she wasn't interested in to the kids who came to our door. She and Ainsley were so excited when we got visitors. Natalie was so gracious - she even said, "You can take more than one if you want to."  Sunday after lunch the girls were looking over their candy deciding which pieces to eat for dessert. I noticed Ainsley didn't have much candy and asked where it all went. "Oh sorry, Ains. I gave out a lot of your candy last night. Is that okay?" Natalie said.  "That's okay, Nat." Ainsley responded. I had to laugh out loud that Natalie gave more of Ainsley's candy away than her own, but frankly, I'm not surprised.  And, I'm also not surprised Ainsley wasn't that upset. She is an extremely content child and once again this year got through about half the houses before wanting to be carried and commenting that she had enough candy.