Heart Party

Today we went to a party. Childrens Hospital Oakland had a cardiac reunion party for kids that have had a cardiac related stay here. It was incredible. There were over a hundred families of all ages enjoying a bbq, clowns, live music, and bouncehouse just out in the courtyard where Shimmy and I normally take our walk. We were invited to come down and check it out a couple of days ago and Simon woke up from his second nap just in time for the festivities. It was incredible to see all these kid running around and know that each one of them went through either heart surgery, or aggressive medication treatments like Shimmy. We met families that spent 2 weeks in the PICU and families that spent 6 months here. It was amazing. I don't even think I can say more about it other than I feel even less alone and even more hopeful. The light shining from all those kids was just brilliant. It was even more exciting to think about coming to next year's reunion only we'll come from home instead of "upstairs". Yeah.

When we got back upstairs it was nap time again from all the excitement (and more puking). When we awoke it was photo shoot time with Simon's personal bard, Cody. Simon is clearly smitten.

Tomorrow is another day and we're upping the Little Man's calories once again. I'm hoping that he'll tolerate it and settle some with the up-chucks. Two of the recognized side effects from his new drug Coreg are nausea and lethargy. Lethargy would actually be a good thing for him right now. Nausea not so much. Everything else is relatively stable. The little man is off to Nod Land right now and Jaime and I are heading home. We're hoping for good night sleeps all around.

Here's a pic from Simon and Jaime's early morning nap. Too Cute.

Ashford and Simpson

Solid as a Rock....
Shimmy's been having some solid days here in the Annex and while there's been a little more spitting up today (just a smidge more noticeable) he's in great spirits, standing like tree, playing with his toes and napping regularly. We're really getting the hang of this schedule and while I still have one toe in the pool of uncertainty and fear, I'm mostly swimming in the lake of 'loving my days' with the little man.
We continue to make friends around the hospital on our daily strolls with Osiel in the cafeteria now giving Shimmy a daily wave from behind the fryalator, Tony and Nick at the Ambassadors desk and of course Esther from Security. It's nice to have a regular route. Today several nurses were in the cafeteria after a training and when we were doing our lap Simon just kept getting stopped for smiles and cooes. He really is a love magnet. Here he is working his charm on some of the nurses.
I'm still working through some of the loss around breastfeeding and lactation but our days are filled with arms reaching out for each other, neck nuzzles, and delicious smiles when waking from naps. It's also amazing to see him respond so distinctly to Jaime when she gets here from work. We are a family. Our baby boy lives at the hospital right now but that doesn't make us any less of a family. In fact I think somehow we're all feeling the bond stronger and more distinctly now because of it or in spite of it, or something...silver lining, lemonade out of lemons, blah blah blah. Here's Simon waking up from a nap. We didn't get a BNP number this week and I'm almost glad for that. It's just a number. I would like to know if we're on an upward or downward trend but I can wait another week. I'm trying to believe the doctors when they say it's really more about his symptoms than any test results. His symptoms are almost non-existent. He'll be breathing harder after some exertion (like trying to roll over and getting frustrated) and sometimes just breathing a little harder when he's excited. Also, he'll sometimes heave a little when there's too much stimulation or when he first sees me in the morning (I'm not taking it personally). The sweating has decreased quite a bit. It's all still a bit tenuous though. I'm just working on breathing.

Napping with Simon in my arms is such a delightful thing. I imagine that my heart spends sometime talking to his heart about staying calm and beating steady and slow. I imagine my breath calling to his. Reminding his lungs to go deep but remain relaxed. I love feeling and smelling the air that goes in and out of his nose, so close to my cheek. And, I love that one hand that reaches out for my forearm or the top of my shirt to touch skin while he's just going down or having a restless moment in light sleep.
Just dreamy.
Yay for Fridays and two whole days with Jaime here.
More images from the last few days.

Simon enjoying a bath for the first time.

Shimmy making use of the flat screen TV (it's not on- He likes to look at the Good Lookin' baby in the reflection)Getting ready to head out for a meet & greet (un-official title= Mayor of the PICU)

Love and thanks to you all.

Laura

Stable like a table

Shimmy's having a lovely day. He's played, he read new books, went out for a nice walk in the sunshine, is currently taking a nice 1.5 hour long nap, and had 2, yes 2 of the stinkiest poops I have ever smelled. There are many reasons to love breastmilk but one of them for sure is for the poop. Simon's poops always smelled kinda sweet or really like nothing at all. These formula poops are wicked. The weight gain is great though. Shimmy's averaging about 40 grams a day which is 1.33 ounces. Yay!!! I appreciate all the support around the ending of my milk and each day means that Simon and I find new ways of bonding. Still feeling sad that it's something I don't ever get to have back and that the reasoning for the end is not any kind of natural occurrence but it feels fine and important to just be with the sadness and at the same time enjoy our new activities together. Simon's just inches away from rolling over and in the last day has found his feet. A new love affair has begun. One foot is usually even more exciting than the other because of the red pulse-ox light. Who knew that finding one's own feet could be so fun.
We're also allowed two walks a day now and have figured out how to manage Simon in the sling even with all his wires and lines. He's loving getting out more and has taken to watching the cars go by through the small clearing of trees at the end of the parking lot that we walk around. It's fun to watch his head snap back and forth (gently) as one car passes and then another comes. Think- watching a tennis match.
Jaime's working late tonight so it's just me and Mamaw D. I miss Jaime but I am so grateful. Not just for her but for all of you riding this ride with our family. It's incredible not to feel alone. Simon feels it. He really does. You all are such an integral part of him having these great days. Thank you.
It's later in the evening now and I would have to say that Shimmy pretty much had a perfect day. Great long nap in the afternoon, very little spitting up, another sweet walk in the early evening, and a gentle journey to sleepland right around 7:30pm.
Aside from the elbow to the head that he got from his Mommy while working on rolling over today (he actually did it with just a little anchoring help from Mamaw D!!!), today was a perfect day. Sweetness, pure and simple.

Song for Simon

(Written last night at about 8 pm)
Okay, so Laura, my mom and I just bawled our eyes out, in a really good way. Carol started her shift by telling Laura that Cody, the Critical Care Support Technician who works evening shifts, had a gift for Simon. Cody came by after I got here to see what time we were going home tonight because he wanted to come by to give us his present. I couldn't wait and kept pestering him to tell us what it was.

He told us that last night he was having trouble sleeping and was thinking about us and was messing around on his guitar and a song just came to him. He then proceeded to play us this most beautiful song on his guitar (that he brought to work just so he could play it for us). He said he's going to record it in a studio (evidently he's a songwriter/performer!).

It was about the happiness in Simon's eyes and how he's not alone and that we're all holding hands and doing this together. There's even a line in there about his Mom and Mom. He's going to type up the words for us and we'll post them as soon as we have them. In the meantime, here's the video we caught of him performing. It's dark and hard to hear, but you can definitely feel the sweetness.
http://www.youtube.com/v/O6KAJQl-c0o
I was just saying to my Mom tonight that Simon manifests so much goodness in the world. It's incredible what keeps pouring out.

Looking preppy with his Auntie Sonya

Zuzu and Simon say 'Haayyyyy"

Shimmy rocking out with his Auntie Dre

Devilish boy (click to see larger photo for full effect)

Yet another good day

Jaime: Another good day today. I'm trying not to feel like other shoe is going to drop. I've learned to not get too attached to the good days meaning anything long term. I'll enjoy them while they're here. I did freak out a little when he started breathing hard for a little bit tonight. I had a good cry- the lip out, huffing, pouty, sad kind of cry, not a big sobbing wailing one. I feel sad tonight. I really, really want Simon to get better. I really, really want Simon not to die. No one knows how this will go and it's really, really hard.



We had a meeting with our team today that was really good. Basically just a check in with our Cardiologist, the Clinical Nurse Specialist and the Social Worker. We aren't going to change anything major- down a smidge on Milrinone, up a smidge on Enalopril, stay the same with Coreg for a week or so and then eventually work towards a Milrinone wean with a goal of maybe starting that in 2 weeks or so. We talked a bit about worst case scenarios and clarified the parameters we set up (no extraordinary measures if he goes into sudden cardiac arrest, probably no intubation but depends on the cause of the respiratory distress) and then Laura asked Dr. Hunkypants what the best case scenario is for us at this point. She asked, "Is total recovery within the realm of possibilities?" He said, "yes". We were both a little shocked, I think. It's still within the realm of possibilities. Not as likely as it was 6-7 weeks ago, but still possible.



I just don't know how to sit with all the uncertainty sometimes. I want to enjoy the good days and not be so terrified of the hard days. It's just awful when the hard days have the same symptoms that he had when he was sick enough intubated.

Laura: It's funny but I'm taking the other tac and am feeling really hopeful about Simon having a full recovery. We'll know better in two weeks about whether or not we can start the Milrinone wean and then if that's sucessful heading home. On lots of meds but heading home. I just loved hearing that at one end of the spectrum is a full recovery. I know what's at the other end and it's real and it's there but just knowing that it's still a full spectrum is comforting. Yeah he was breathing hard tonight but he also went to sleep and got his heart rate down the 113. Thasss right. 113. Gotta love it.
Tomorrow is another day. We'll see what it brings. Shimmy and I did get a two walk a day pass. We went out for just one today but it was like old times with Shimmy in the sling, checking out people and trees. Granted I was pushing an IV pole, still it felt great to be walking around like that again.

Grieving...for the boob

My milk is just about done. It's been a rough day feeling such excitement that Shimmy has been tolerating the higher calorie formula (we're now at 50/50 with breast milk ) and so getting the nutrition that he desperately needs to grow and heal and also realizing that my milk is quickly drying up. It feels like this devastating loss to me that I know I can get over but it also just brings it way home that I have a Son who is so sick he can't nurse and it's been going on long enough that my milk is drying up even with the pumping, drinking (water) and supplementation that I've been doing/taking for the last 7 weeks. And straight breastmilk is not enough for him as he needs so much more to heal his very sick heart.
I can't help but remember that these days, as normal as they've begun to feel, are not anywhere near normal. As much as Simon seemed so normal and healthy and loving life today, he is battling for it with every heart beat. The end of my body making milk for my son feels huge. I know there are so many other things I can do for him but this was one of the first and kept us connected as he went from being in my body to getting his sustenance directly from my body. Even for the last few weeks as his nursing stopped I was still feeling that connection as he at least got my milk through his NG tube. I cannot stop the tears each time I think of this loss. It's nothing compared to how much I would rather have his heart heal and his beautiful growing body get the energy it needs. And, it still feels like a huge loss.
And, Simon had a great day today.

Another good day

Good day for us, hard day for a few of our new friends here. I just ran into the Mom (Coco) with the baby with no butthole. I saw her crossing the street outside our window, with her baby in a sling a few days ago and thought, "Oh, how great that they're out of the hospital and back for a check up". Turns out that she had been coming from the Family House across the street to the ER because her son had stopped breathing. He also may need a heart transplant due to a huge hole and maybe kidneys. Oy. She was in great spirits though, and very sweet- she introduced me to her new friend there and talked about Laura and I putting food out for everyone in the lounge.

Another new friend whom we met last week had some drama. Last week we were in the cafeteria in the evening and sitting next to a couple that was obviously Muslim and their toddler. We started flirting with their little boy, playing games with a Coke can, etc. Then we began a fascinating conversation with his parents. We talked about Simon and they said their 5 month old son was here due to trouble with his esophagus and possibly a few other minor seeming issues. We then started talking and I started to get a bit nervous. We were obviously a queer couple and they were obviously very observant Muslims (the wife didn't speak any English) and I was afraid that the husband would start to condem us, etc. Instead we had a most amazing conversation, talking about philosophy and religion, and the beauty of the universe/God. We've seen them a few more times and I gave Dad some food one night.

Last night a Code Blue (cardiac arrest) was paged for the 4th floor and I overheard the nurses talking later about how it was a 5 month old. We both were a bit nervous that we'd know who it was but couldn't remember any other 5 month olds that had been in the ICU. Unfortunately, this morning when I came in early, I saw Dad at the front desk on the phone and immediately knew it was his baby.

It makes me want to not talk to anyone here sometimes. I've said to Laura a few times, "it could be worse for us. Okay, not worse, but different worse". I tell you those stories only so you can send them prayers and good thoughts too when you're thinking of us. Coco's new friend has been here for at least 7 weeks with her son and when I mentioned that we were on visitor 103, she said, "wow, we just live in Santa Rosa (an hour away) and we haven't had a single visitor". I didn't even know what to say...we have such incredible bounty and I am so grateful. I'm trying to share the love.

We're going to start Coreg tonight! Very excited and a little nervous.