Adventures with Ellie: celebrations… pity… and shame

Ahhh… I feel like we fell off the face of the blogosphere these past five weeks. I’m sorry if you’ve been awaiting an update – we were enjoying the downtime as a family and working on making summer memories. You can always assume that no news is good news in our world. Constant updates are usually a sign of a very stressed out momma (blogging is the cheapest therapy around, y’all). That being said, we’re excited to post and bring everyone back into our quirky little world… maybe it’s because my mother-in-law just picked up the boys and the little bug is sleeping, so I feel like I have some time and space to think. Whatever the case… here’s what’s up.

Part 1: Celebrations

Ellie is doing so well at home. She’s learned to roll over front to back (finally) and she’s back to occasionally rolling back to front. She’s really close to mastering the art of sitting. Until it’s something that does NOT come natural, it’s easy to forget how much has to coordinate to stay in a sitting position. It’s quite tricky. She’s now stable enough to sit in the Bumbo seat for longer periods of time, and we’ve even moved into the ExerSaucer a bit. Her Tumble Forms therapy chair is no longer a challenge at all… so it’s where we sit her for meal times. This little turkey is gobbling up two ounces of purees at each meal before we start her tube feed. This is double what she was taking just two weeks ago. OT does wonders for this kiddo. I remember (not too long ago) when we could barely get her to take 5 mL at a time (1/6 of an ounce). So she’s making great strides there. She’s still very much tube-dependent for her nourishment, but showing signs that she will be able to eat via mouth down the road. Who would have thought that would be a triumph? She’s now eaten all the different kinds of baby food purees we have, so that means that I’m free to start making my own. We were entirely too broke to buy any commercial baby food for the boys, so they just got the food I made… so I’m excited to get back into making food. OT and PT both agreed with Rae (our daytime nurse) that Ellie is a very fast learner… and extremely social. Wonder where she gets that one?

Our very happy girl in her ExerSaucer

Nom nom sweet potatoes... those cheeks are filling out more!

Her first sink bath after surgery... she was excited to splash

She’s only spent a few days on the vent at home. She’s still on the vent through the night, but she’s off all day every day… unless she’s unusually congested or has trouble keeping her O2 sats up. It’s nice to have the flexibility to put her on the vent if she seems labored in her breathing… to take the stress and work out of it for her and give her a chance to rest and recover from whatever bothers her. We still have dreams of one day having her trach removed, but after a very scary trach change a few weeks back, I have a feeling that it’ll be around for a while longer. Who knows how long a “while” is? We have a sleep study in mid-August that will give us a better idea of where she stands from a sleep apnea stand point. That’s not even inpatient… just a quick, overnight outpatient visit. Yahoo!

We had a cardiology appointment at the beginning of the month and Dr. Luby was so excited to see us. She kissed Ellie on the forehead and said that her echo was normal. NORMAL! That’s never a word we’ve heard from the cardiologist about our daughter. What a celebration this was. She had an EKG that confirmed that Ellie’s completely out of heart block, as well. Praise God! At the time, Ellie was just on aspirin and her storming med, propranolol. We had concerns about her heart rate dipping into bradycardia while she was sleeping, so we asked if we could wean down on propranolol and eventually get rid of it and see how she did. I told Dr. Luby that I’d actually missed a dose of it the previous weekend… and another single dose the weekend before (Ellie gets 3 doses a day). I was so embarrassed saying this because dosing meds for this girl was always so regimented before… there was a science and structure to it all. Once she was so healthy, it was easier to slip up. I slipped up… twice. Dr. Luby said, “Well, if she was okay when you missed a dose, just stop giving it”. So we did. She hasn’t had another dose of propranolol since her appointment on 7/1. And know what? She hasn’t stormed. A few days later, she was done with aspirin. That means that our sweet girl is completely med-free… for the first time since she was three weeks old. That’s a HUGE milestone… for her… for me… for her nurses… for her quality of life. And no storming? What an amazing relief. I think I downplayed just how scary storming was… until I went back and watched a video of what she used to look like when she was storming was I overcome with how much she was going through that we just compartmentalized as a “normal day” for Ellie. We’re happy to close that chapter of her book. While the origin of her storms was never known, it was clearly related to her severe cardiac condition… which is normal now.

I thanked Dr. Luby again. I hugged her and said that I don’t even have words for how grateful we were. I can’t imagine the course we’d be on if she hadn’t pushed so hard to get us to Boston. She sent all of Ellie’s medical files, yes, but she also sent a letter from herself to the head of cardiology in Boston/Harvard Medical. Then once he had the files in hand, she called him… every day. She called from different numbers so that maybe he wouldn’t know it was her calling… just to check up on the status of the decision for our daughter. She said he’d answer and say, “Hi, Luby”. She’d say, “How did you know it was me?” “You called from a 937 area code… you’re the only person who calls from a 937 area code.” Gotta love that kind of persistence… gotta love someone who advocates for your child just as you would advocate for your child. At the end of the appointment, we hugged again and she said, “I’ll see you in three months.” What?? Three months? We were used to seeing her every week… week and a half if Ellie was doing “okay”. There were times when Dr. Luby called my cell phone every single day between appointments, too… because she knew how severe our situation was, even if she didn’t let on how concerned it made her. So it was already weird to not see her for six weeks… three months? That’s amazing. But we’ll miss her.

Taking off her socks before her appointment

Not too thrilled to have another EKG

So we’re spending our days doing therapy with Ellie hoping that maybe she’ll be able to sit on her own by her birthday in September. Hoping that she’ll learn to clap soon… or start banging toys together. This is exciting, but brings me to my next segment…

Part Two: Pity

There was something so exciting about milestones with the boys. So much pride I had when we went to their appointments and I could bust through that Ages & Stages questionnaire like my kid was crazy advanced or something. Now, those questionnaires cut deep. And we have to go through them pretty regularly. We spend so much time marveling at Ellie’s milestones because she doesn’t burn through them one after another. When she found her hands, she stared at them for weeks… never doing anything more than wriggling her fingers and watching in amazement. While it’s so awesome to move through these slowly and appreciate how much babies have to learn to do things we take for granted, it’s painful to sit through these questionnaires answering question after question with “no”. Does she pick up toys and bang them together? No. Does she sit unassisted? No. Does she reach for you to pick her up? Never. And the one that really cuts deep right now, Does she say mama or dada or baba in relation to said things? I usually manage to squeak out a, “She’s silent… so, no”… trying to play it off with a nervous chuckle afterwards. I know the person posing the questions is just going through one of the to-dos on the massive assessment list they need to go through, but I always sit there holding this child that’s so amazing and strong and determined… but I feel deflated as she’s graded according to these abilities that she’s far from attaining. I wish there was another way of quantifying her abilities. I don’t dare look at those questionnaires anymore. I used to do this with the boys so that I could see if they were “on par” for a typical two month old… three year old… etc. I know that if I would look at the checkboxes now, they’d probably say that Ellie is on par with a 3 or 4 month old. And that sucks. She is a really fast learner, though, she really is. She’s full of determination and has the sweetest disposition. And her smile, oh her smile… it encompasses her whole face and makes all worries and stress melt away.

I see posts by friends who have babies that are the same age as Ellie… pulling themselves up on furniture… venturing into first steps… wow! I’m so very happy for them… I remember the pride and excitement in those moments with the boys. But this is where the pity sets in… for myself… for Ellie. I hate that feeling… but it’s real… and I promised to share what is real here. We visited dear friends of ours who have a new baby. That little monkey was 7 weeks old and was smaller than Ellie, of course, but not dramatically so. He was sweet and soft and strong… strong… and felt so sturdy! And he cried… and I had to fight back tears as I listened to him cry. Oh, that sweet sound of a baby crying. There’s something about it that’s so fragile and needy that makes a momma yearn for that baby. I hadn’t heard a baby cry in a long time. It was a wonderful, painful sound to me. I’m realizing that there’s this whole other world, a private world, to raising a child with special needs. It’s not that I’m jealous of the abilities of other kids… not at all. It’s definitely not that I’m disappointed in Ellie’s abilities at all… it’s just the reminder of where she “should” be sometimes sends me into this pity party. I try not to stay there long… it’s not a good place to be.

We try to shake it off and get back to being thankful and amazed by the marvel of a daughter that we have. She is a warrior and we’re so very proud of her.

Part Three: Shame

Another great feeling, right? This one is about me… so I’ll keep it short. With all that Ellie’s gone through lately and come through with flying colors, I started to realize how much I’ve taken my wholeness for granted. I have a healthy, whole heart… I have a very able body… I have lungs that need no help functioning… I have muscles that have been very strong and athletic in the past. What did I do with these gifts? Well, I sat on them… literally. Earlier this week, I decided to go on a run to relieve some of the stress I was feeling. Want to know how much more of my body moves when I run than it used to? No… you don’t want to know. It’s not cool. The last time I was an avid runner was 2007… as I started running, I realized that was 8 years ago. Seriously? The last time that I was consistently physically active was while I was pregnant with Lance and I was swimming and playing competitive tennis several nights a week. So, I’m ashamed of what I’ve done with this healthy body I’ve been given. And I’m going to do my very best to take better care of it… because health isn’t something that’s any fun to mess with… and an extra 40ish pounds moves entirely too much when I run. Yeah – I said it… 40ish… ugh. So here I am, toasting with a glass of ice water to a healthier lifestyle ahead. I know it’ll be a long journey… but I ask for your support as I try to prevent myself from squandering this gift. I don’t have the time nor the energy to obsess about this and focus on only this… but things have to change. Here goes nothing!

Last, but absolutely not least on my list of updates, I’d like to ask y’all for prayers for friends of ours. The world of complicated kiddos is a tough world to live in. We’ve bonded with these families and love them dearly, and these families could use your prayers. Either their kiddo is in the midst of unknown territory for them, or their kiddo is in the midst of a long-fought battle… desperately holding on to the glimmer of light at the end of the tunnel… maybe their kiddo is undergoing a very complicated surgery this week… or their kiddo was just pummeled with more impossible news to swallow. I’m not going into detail at all… these are not my stories to write… but I wanted to throw out some names of kids that desperately need your prayers. Pray for healing and comfort, pray for understanding and peace for the families, pray for answers as the unknown is overwhelming and difficult… pray for strength as these kiddos continue to battle the odds every day. Prayers for: Savannah, Sofia, Abby, Khloe, Dominic, Tillery, Jax, Charlotte and Austin. If I’m missing any (and I know I am), I’m sorry. Just say some prayers, folks. And pray, please, for my little nephew who hasn’t yet made his appearance today (his due date). We’re anxiously awaiting his arrival – pray for a smooth delivery and quick recovery for momma and baby. We’re excited to welcome another family member very soon!

Today we celebrate all the victories we’re seeing every day… swallowing back the feelings of doubt and pity and shame… and pushing forward because surely, tomorrow is a better day, and praying for all of those who are not having the best go-round right now. Below are a few photos to capture what’s been going on with us these past few weeks.