Happy Easter!

Isn't this reminiscent of the monkeys...Speak no evil, hear no evil, see no evil...?

What a busy weekend doing "normal family" stuff! We are wiped out! It certainly is a lot of work taking Kiera places that other babies go and still managing to fit in all her medications and pump feedings, not to mention her ALL IMPORTANT 12-3PM NAP! She can't go without it, and has not proven to be able to sleep in the stroller, car seat, or on Grandma's floor.

We spent Saturday afternoon at Grandma and Grandpa's for an early Easter celebration and egg hunt because other family members had other obligations on Easter Sunday and wouldn't be able to come. It was fun, although Kiera never got down for her nap, and crashed the minute her head hit the pack 'n play when we got home around 5:30. Next time, we will have to add the pack n play to our plethora of medical supplies (if there's room in the car).

Daddy and I took her to the Aquarium on Sunday. I think her favorite was the sea turtle in the big tank with the sharks. After seeing the fish, we spent a little bit of time in the Biopark on the grass. It was a perfectly lovely afternoon.

Today was a lazy day at home to recooperate which will be followed by a morning at the hospital for doctor's visits tomorrow.

Enjoy the pictures!

Love,

Therese

A few more cute pics of Kiera at home...

I forgot to tell you...Kiera has decided she likes standing. She pulls up while holding my hands. Of course, she is a bit wobbly, but this is a long way from the old days where she would lift her legs and hang if I tried to stand her. She's certainly making big strides since she's been home.

Therese

First Trip to the Rio Grande Zoo!

This picture makes me think we need a name for the ventilator. It seems to be the 6th member of our family and at the center of every portrait. What about "Vicki?" "Vanessa?" :)

We had such fun on our family trip to the zoo! Of course, Kiera was, in the paraphrased words of Dr. Glasser, "wildly dissappointed to discover that giraffes are not neon pink, blue, and orange, with fringe on their ankles" like her stuffed giraffe toy. It was difficult to find a window where Kiera would be awake, off feeds, and not need too many meds. Our 9am goal turned into 10:30 in the morning and pushed into her nap time a bit, so she wasn't as cheery as her afternoon mood can be, but I think she had fun. She actually liked watching her brothers and one of our NICU friends' baby instead, and she continuously searched for Mommy and Daddy.

The trip was a great success, and now we have our family pass renewed so we can go any time we want all year long, and we get in free to the Zoo and the BioPark and Aquarium.

Have a Happy Easter!

Love,

Therese

Kiera Playing Ball with Mitch

Kiera loves the physical humor of other people, namely her family members, getting "bonked" on the head with a ball or ballon. She was laughing so much at Mitch. She loves watching her brothers tool around the house and enjoys the family interaction. She's able to hold a sitting position indefinitely now, although she still needs one of us to place her in that position to begin with.

Kiera's respiratory situation seems better than last month. I don't want to exaggerate. She still has "veklhempt" moments and needs bagging every now and then, but she is doing well overall, I think. We're still on 4 hour Nebulizers We have done her last two trach changes in the doctor's office and have been signed off to do them at home again. She is on 3 liters of O2 - approximately what she initially came home on. She is still on steroid therapy since Feb 26th and will be weaned off by March 31st, so she is VERY puffy from water retention which is a side effect of the steroids. It should come down has she comes off the drug, so don't get used to her crazy chubby cheeks. No... we are not overfeeding her.

I will be adding a post from our Zoo trip today shortly after this one. I downloaded my camera data all at once, so there is lots to report.

Have a Happy Easter!

Love,

Therese

Just a little visit to the hospital... Happy Birthday, Mommy!

So Kiera was readmitted on the 3rd, my birthday. She was having trouble keeping her Sats up even on 12liters of O2 so we loaded her up with the nurse and drove her down to Pres. She lucked out and got her princess suite with a view again, which was nice for familiarity for her. She came home again yesterday after having a little surgery on Tuesday to dilate her trach stoma site, scope her, and change he trach tube back to a water cuffed bivona. We had been having trouble getting he trach in during her trach changes because of granuloma tissue around the stoma. I was a little nervous about going back to the bivona since it was the type she had before we ended up on the road to Houston. However, she seems to be doing much better since the surgery and change. I think she may have been overcompensating for a ledge of scar tissue that was intruding on the other trach. She is now back down to 3 liters on her O2 and quite playful. She's doing much better at maintaining a sitting position once placed that way, even without the boppy pillow for support. She'll do her next trach change in the hospital to be safe. Right now she's still recovering with a lot f blood tinged secretions, but, in general, seems really good and happy to be home. The plus side...two nights of uninterrupted sleep for mommy after a month of getting up every 2 to 3 1/2 hours. And...we went to a movie! :)

Love,
Therese

Kiera's Baptism/Welcome Home Celebration...

Sorry about the sideways pic. I'll try to rotate it later.

Everything went so well yesterday. The weather was perfect, sunny, window opening weather (even while today it snowed and was windy). I've been waiting for this day for so long. The only hitch was having her wonderful godmother get sick so she couldn't come, but she was there in our hearts the whole time.

It felt like finalization to the 18 month delay in getting Kiera home. It felt so good to actually celebrate her birth and homecoming and actually have her well and interactive. She got to play with her cousins who have previously only seen her when she was sick or asleep. There has at least been an underlying feeling of unrest ever since her birth for the last 18 months, especially every time I had to attend a family function without Kiera. I felt like I was in limbo waiting for closure. She was always missing. Anyway, it is much more peaceful now, even with all the meds and alarms and bagging emergencies and a straight month of getting up every 3 1/2 hours to run nebulizers. I still don't have to plan every day around a hospital visit.

She outgrew her baptismal gown in October, so we made due with what she had. I felt good about getting her to the church on time. We had to bath her and do trach care the night before, and run 8 am nebs, 9 am nebs, and deliver all her meds before leaving. Getting ourselves ready and all her equipment loaded and unloaded to be at the church by 11am was tricky, but we managed quite well. During Kiera's ceremony Monsignor Olona held out his hand to bless Kiera, and Kiera mirrored his movement and reached back toward his hand. It was so cute. She was so tuned in to everything going on. She looked at Monsignor every time her said her name. It was kind of neat since most infants are oblivious to the proceedings of a baptism since they're so little, but I guess a plus to having been forced to wait so long is that Kiera is old enough to participate.

Enjoy the pictures. Thank you to everyone who could come. I know so many more would have liked to have come if we hadn't been keeping it small to reduce germ exposure. Believe me, I was thinking of everyone who helped get her here and what it took to do so during the whole ceremony.

Love,

Therese