Zachery

Zachery is 3 years old and to us, cute as can be (most of the time).

My friend, Tanya Dunn, took some great photos of Zach when he stayed there overnight. As always, Tanya did a stellar job.

So many posts are all about Avery and so this will be all about Zach.

He is a great big brother and gives great hugs. He loves trains, watching Chip n' Dale,
playing at the park, playing with water in the kitchen sink. Full of life and very observant. We love Zachery.

Spring is Here!

Since we've been home, I haven't kept up with posting. It's so nice to have our family at home! I'm past the yucky-leaky-6-week-post-baby-ness and only dealing with little sleep is manageable. :)

What people really want to know is how Avery is. She caught Zachery's cold and has had some coughing fits and consequently spit up all her food. Last night at 2 am she coughed for so long it all came out. She finally smiled yesterday. It had been a few days since she did. Cuitadihna (careful/poor little one). I think she's past the worst of it.
All in all she seems to be doing pretty good. She's been gaining weight since coming home, despite her urping some meals. Sorry for the details.

Zachery is happy. Happy we're all home and has been really sweet with Avery. Although I caught him sharing his saltine cracker with Avery yesterday, and I had to swipe out the bits from her mouth.
Zachery is in love with a classic Disney Chip and Dale movie. He is so enthralled by it and is all smiles when it's on. He's seen it a few times ;) since we've been home. A friend has graciously taken him to the park to play and he loved that as well. Grandma Marks is in town and helping us out, too. Allowing me to take Zach out for walks, or carries, to the park.

On another note, long ago, in a galaxy far, far away, we put in an offer on a home here in Toledo. This week we heard that the bank accepted our offer!! That's all we know so far. Nothing speedy here. We're hoping for mid June to actually get into the home, if all goes well and passes inspection. We want to put in a/c to beat the hot, humid summers, and get a fridge for it - in that order. :) Then we'll be set. This will be our first home, a starter home. I guess that means there will be a finisher home as well.

2 Months :)

Avery is 2 months old today! Being home is wonderful and stressful. Less stressful than last time, but I feel like one day at a time, even one minute to the next, things will be fine.

I have learned and, am learning important things. To make moments count. When I'm with Zachery, give him my undivided attention so he'll see he matters. To prioritize and let go of things that don't really matter in the long run. How to boil and sterilize Avery's stuff and make it last. :) How to be more efficient, especially with drawing meds into syringes, the first night took an hour.

I've also realized that I need to get out of the house sometimes. That helps me. :)

I need a shout out to thank Tanya and Jason Dunn, Rob and Kim Thomas, you know all that you've done and it's all been far and beyond and (as Alisha would put it) certainly has put you "one foot into heaven". My parents and Eric's parents have been hugely supportive and I can't express here all that they have done and do! Liz and Tim, Bob and Susie, Alisha, Emily, Andrea, Aryn, have helped us out in different ways- all great ;), just to name a few. And (good grammer) to all of you out there reading this for all the kind thoughts, blog comments, and prayers on our behalf! I was amazed at the kindness and generosity of so many. I've felt that when, at times I thought I shouldn't feel okay, but I did. This is a long way of saying thank you, it means so much.

The positive thing for today was having both our parents, Eric's grandma and Aunt Susie and Uncle Bob here with us to share a special blessing for Avery.

We all have a road ahead of us. It may have curves and bumps, smooth and rough surfaces (we know about rough roads, huh Toledoans), but the person we were in the beginning, won't be the person we will be in the end. Make the journey, the best journey.

Home, James!

Tuesday afternoon, Avery and I left the hospital! We did forget a medication and had to turn around a go back to get it, but then we came home! Yay. This time I felt peaceful and calm about coming home, that she would be okay. Avery is looking and acting like a almost 2 month old. She is sleeping through most of the night and I'm just tubing her milk down to her stomach so I don't wake her. Unfortunately I still have to get up, but that's okay. Today, she finished (so far) two bottles, entirely! I didn't have to tube the rest! Que bela.

My parents went to visit my brother and his family in PA and took Zachery with them. I'm trying to use this valuable time to get my ducks in a row here at home. I do miss him though. I think I've only had 2 occasions where I've been home and Zach has not.

Avery now just needs to gain weight, she weighs 7 lbs. and have some doctor visits. Late August is the projected time for her next surgery. We'll cross that bridge when it comes.

Slow and Steady

This weekend, Eric was able to come up for little while on Friday (too short), but thankfully he is busy at work and that's good. My mom and Zachery were going to come up on Saturday and I was going to spend time with Zach while my mom was with Avery, at least that was the plan. Saturday morning I woke up feeling sick to my stomach and achy all over. There's been a flu bug going around the Ron Mac and I guess I caught it! Avery was going to be moved to Moderate Care and I wanted someone to be with her (Mod. Care is the hole where they don't really watch the patients well). Thankfully my mom asked, and Tanya (photographer) agreed to watch Zach so my mom could stay with Avery while I rested. Thank you, thank you Tanya and Mom.

Avery currently is still at the Ped. ICU and waiting for an opening in Moderate Care to go. She still needs a bit of oxygen to keep her blood oxygen level up where it should be. She had a little mohawk in her hair the other day, it's Avery asserting her wild side. :)
She continues to cough big and get that fluid out of her airway, and that's good.
I'm assuming all is going well and she's progessing to going home, provided that her oxygen levels stay up where they need to be. I don't know when she's going home, and I've learned not to say or promise anything til we're actually out.

Thanks for the continued prayers, comments, cards, help with Zachery, and everything else. !

No Trach

Avery had her bronchoscopy this morning. The good news is, is they didn't trach her! The meds she was getting for swelling didn't seem to work, but they did go in and stretch, or "dialate" her airway. I saw the picture and it looks so good, red, but good. Avery's throat is sore, and her blood oxygen level is low, but they're watching it and anticipate it to get better as the day wears on.

I held her after she got back to PCTU and she kept coughing and I heard her cry, a real cry! I don't hear the stridor squeeks anymore! We think her vocal cord is healing as well. After she is stable, we should be coming home soon. Yay!

I mentioned to someone how I felt like I was living in a bubble here. Not quite real, yet too real. Going home, for real this time, will be great. Avery needs to get bigger and so we can do this again this summer.

Positive thoughts, no trach.

Consents

Avery is doing alright today. She had a swallow study done and swallowed like a champ, too bad it was just barium. Avery's been on tube feeding only and misses the bottle.
Tomorrow she is going to have another look at her airway. She'll be sedated, but not as much as yesterday so that her vocal cord will be less sedated (I think). Again, I made myself clear on how we felt about a trach and that since she'd had a stridor before, and it'd gone away, then returned, that it wasn't a permanent thing. However, I didn't cross out "tracheostomy" on the consent this time.
When you sign a consent, they list all the risks and suddenly it sounds like certain death. I know it's not, but sheesh.
Avery chews on her pacifier and I got a shot of her holding it in her mouth, so cute.
Tonight I am going to hold Avery and watch "Lost". :)
Hug your child and tell them how much you love them.

Through a Clear Airway, You can Breathe Forever

Today was a good day. Avery slept through the entire night, and even had a dry diaper in the morning! Potty trained, we're good.
They put her out and looked down her throat and found that her airway below her vocal cords is very restricted. That's been causing all her breathing problems. I'm glad it went well and they were able to find out what was wrong. Now, to treat it, she is getting steroids (reduce swelling) and Prevacid (an antacid). On Friday they'll do another bronchoscopy and if her airway is looking better, she'll be able to go home with these added meds and continue with tube feeds. On the other hand, if there's been no improvement, (and I quote the ENT doc) "we'll talk trach again".

These docs, (there was an ENT resident with him as well) had brought a consent form for the procedures today and had written in "tracheotomy" (or however you spell it) and I said I wasn't comfortable signing that. So I crossed that out and said we'd have to have another conversation before that would happen. Avery's surgeon, Dr. Hirsch even said, "I'm not interested in a trach". Now, I know people have them and need them and it's okay, but if Avery can avoid it and be fine, then I'll certainly assert my opinion! I'm the mom, and for now, the boss of Avery. j/k I had a childhood incident where I told a friend's mom, "You're not the boss of me" and ended up being grounded and having to apologize, with a flower, to her.

I gave Avery a bath tonight and got the goo out of her hair from the iv in her head. I love to do what I can, I don't mind changing her little diapers.

Avery had grandparents day today. Grandma Christensen was up here and spent time holding her. Then Grandma and Grandpa Marks came up tonight and both sat and held Avery too. Lil' Avery is growing, a bit, and more alert each day. We love her!

Please, if and when you pray, please pray for Avery's airway, that the drugs will reduce the swelling. Thank you.

Have a great day!

Craziness Becomes Us

I feel like we've been running a marathon (not that I've actually done that :) ). I just wanted to update on what's happened to Avery.
Last Thursday she was discharged home. That was great and great to be home. Honestly, taking care of Avery at home was more challenging than I thought. On Friday and more so on Saturday, she was laboring more with her breathing, stridor got louder, she looked dusky, lethargic, feedings went down and sweaty. Then on Sunday, the home nurse called to check on us and we decided to take her to the ER at St. V's in Toledo. We saw several doctors and residents that we know who were kind enough to stop by and check in on us. Thanks.
She stayed in the PICU til this afternoon and was transferred back up to U of M in Ann Arbor. Ay, we just left. The only cool thing about this was my first ride in a helicopter, as I held Avery.
Avery is back on the General Care area and roommates with my friend, Maria (from the Dominican Rep.).
The Ron Mac was full and Maria kindly offered the other bed in her room for me to crash on, but miraculously when Eric brought some things up for me tonight, the manager had an open room for me. :)
Avery's trouble is her vocal cord and the respiratory and reflux issues with that. Half is still paralyzed and that allows stuff to pass when it shouldn't. Yesterday, last night and most of today, Avery was sooo fussy. She would just cry and cry. She finally settled down at 10 pm tonight. I'm still not sure what was the problem (too much stimulation, iv that was coming out, irritated trachea/esophagus, sensed my stress). The iv that was in her hand from Toledo did come out and they ended up putting in a iv on her head. That just looks worse than it feels I'm sure, it's just hard to see. With the protective thing covering the iv, she looks like a half-princess-Leia.
That's the scoop here. We're tired but hopeful that things can be resolved with Avery's breathing.

And Not Quite Yet

So today, I got up early and ran around like crazy getting my room and bathroom at the Ron Mac H all cleaned, linens washed and food cleared out (and I was running literaly at one point). I did it, paid my bill, loaded the car and went to the hospital to get our Avery. Yay.

I was ready, and Avery was looking good too. I was ten minutes from walking out the door when...her exit blood test came back with a high potassium level. Basically they're trying to figure out why it's high and tweek the blood pressure medicine. This means possibly we leave tomorrow or Friday. :)

I did get my room back at the RMH and that's good. I'm grateful they found out here, before we left. :) Let's hope for the best! I was soooo close.