Thankful

For the past 15 months Zack and I have put our social lives on the back burner.  Before Ava and Reese were born we loved to have friends over to hang out, cookout on our deck, and spend lots of time with friends in general.  We have been and continue to be committed to doing what is best for Ava and Reese but it has been nice with this wonderful weather to start being a little more social.  We are so blessed with such understanding, loyal friends through all of this and we thank each and every one of them (or you) for walking along side us even though we haven't gotten to spend as much time together as Zack and I would have liked.  However, with the girls getting stronger and flu/rsv season coming to an end, we will be able to SLOWLY ease into being a little more social.  We love our friends and Ava and Reese will soon find out what great friends they have too! 

Below is a picture of our awesome friends and next door neighbors the Southards.  If you follow their blog at all, which is listed on the right side of this blog, you probably have already seen this.  Anyway, it was a great evening with food all over the place and lots of smiles.  It was a great way to socialize, being outdoors and having Ava and Reese tucked in the back!

These pictures are from yesterday afternoon.  Our friends who live right by us, the Southards and the Ahrings, hung out on blankets in the grass with us.  Ava and Reese had to stay on their own blanket and play with their own toys but they were okay with that. (Reese really was happy despite the face in this picture!)

Here are some other pictures of our crazy little girls.  Yes, Reese is very intrigued with Ava's mouth these days.  And the Cuffy (my dad's nickname) t-shirts are extra special to us.  In February the Galesburg High School (my hometown) track team changed the name of the first indoor track meet to the "Cuffy Invitational."  This was a meet that my dad always announced at with his loud booming voice.  The dedication of this meet in my dad's name means the world and now the whole family has shirts to remember this wonderful honor.

Just a quick on the girls' progress...Reese is really close to walking.  She stands on her own and takes a step or two before the panic sets in and she drops to all fours.  Ava is off the ventilator during waking hours and during her nap.  She is doing great and will be going back to the doctor the last week in April.  She will have her normal vent clinic appointment and then a couple days later (April 27th), she will have a bronchoscopy.  They told us to plan for this to be an overnight stay.  She will be under anesthetic for the procedure to look at her airway and then they monitor her for quite a while afterwards.  This is definitely on our prayer list for a safe procedure and that her airway will be in a healthy and strong condition.  This will tell us if there is any reconstructive surgery needed in the future.  On a lighter note, she is getting faster at crawling and going up the stairs, as well as standing on her own for a couple seconds when we let go of her.  Such big girls and more to be thankful for!

Girls in Action

I had to share these videoclips.  The days seem to be getting more and more fun.  The girls are learning to do more every day and are becoming so much fun to interact with! Enjoy!

Warm Weather = Fun!

The title of this blog entry says it all!  The weather over the last week or so has been terrific.  It has been wonderful being outdoors with the girls and as you can see...the warmer, humid weather also brings curls to the McNeil girls!

Reese's curls.

Ava's curls around the ears and even a little up top!

The girls also got to swing at the park for the first time.  We got plenty of pictures and video.  Reese wasn't too sure at first but warmed up pretty quickly.  Ava thought it was pretty cool from the start.

On a side note, Ava is still taking the trophy for best eater and Reese's hair is officially long enough for a ponytail!

Look what a big girl I am!

Love those black beans!  Especially when I get to do it myself!

We went to the doctor yesterday with Ava and we are switching over from formula to PediaSure.  Let's just say that today was the first day and it was far from successful.  We have learned that we are going to have to make this a slow transition.  The other exciting news is that she can be off the pulse ox machine when we are with her and she is awake.  That means for the first time ever we get to pick Ava up and play with her without any wires, cords, or tubes.  It's pretty amazing.  She is also able to take her naps now without the ventilator.  The first day of that will be tomorrow.  We feel she will do great but definitely a big step.  We are going to try to schedule a bronchoscopy at the end of April so that the Neonatologist and ENT surgeon can see Ava's complete airway and determine if any surgeries need to be done in the future. 

For now we are enjoying life and taking in this great weather!

Action!

Every day gets a little more action-filled at the McNeil house.  Ava is now officially crawling.  She started late last week and is getting better and better at it every day.  And Reese...well, she has officially learned how to shake her head no.  Luckily at this point she doesn't really have meaning associated with it but thinks it's really fun to do! 

The other event around our house is nap time.  We are attempting to have Ava take her nap upstairs in the nursery with Reese instead of in her crib on the main floor.  We figured that eventually they will sleeping in the same room and it's probably a good idea to get them acquainted with this situation.  This is only day two of the trials and the normal 2-3 hour nap has turned into 45 minutes.  Let's just say we are still working on this!

 Here are a couple videos and pictures of them in action!

Keeping Up

I knew it had been a long time since I made a post on the blog but I didn't realize the last post was January 20th!  Sorry for the delay!

Well, these days mommy and daddy are working on keeping up!  The girls are just getting busier and busier so mommy and daddy are having to pick up the pace.  Reese is still crawling all over and pulling up on everything.  In fact, she wants to see what is going on EVERYWHERE and wants to get her hands on EVERYTHING.  The pictures below pretty much sum it up.  She is a handful in the highchair where she likes to spit things out to be funny.  Not everyone finds it funny though.  She has gotten her orthodics for her feet and doesn't mind them too much.  We eased into them, just wearing them for a couple hours a day at first but now she wears them all day except when she's sleeping.  And don't worry...they are pink so they match a lot of her outfits! 

Ava has been doing new things too.  She still isn't too interested in crawling but she pulls herself up on things quite a bit.  She has been a rockstar in the highchair taking table food.  She started out slower than her sister when we began feeding the girls baby food and table food but now Ava does better than Reese lots of the time.  Some of the girls' favorites are avocado, greek yogurt, applesauce, ritz crackers, toast, sweet potatoes, and potato soup.  Ava has also been spending most of her waking hours off the ventilator.  In addition to that, she has been spending 5-15 minutes on a new valve on her trach called a passy-muir valve.  This allows air to come in through the trach tube but closes when she exhales, causing the air she breathes out to pass through her vocal cords.  That means she is able to make more sounds.  She was already making some sounds since she has an air leak around her trach tube but now she is getting used to the feeling of having to exhale through her mouth or nose.  We will be increasing the time she spends with this valve little by little as she tolerates it.  Our last vent clinic was on Feb. 13th and things went well.  They once again lowered her ventilator settings and the ENT surgeon came to do the upper airway scope that was supposed to be done the last time we were there.  The ENT doctor was pleased with what she could see of her airway and said her vocal cords look good but she also said that she can't get a good look at everything until we do a full bronchoscopy.  That will more than likely be scheduled for late spring. Oh and by the way, the results from Ava's steroid/hormone levels came back normal and showed that her glands are now producing appropriately after all the time they were suppressed when she was on steroids.  That was great news!

As for Zack and I...we are enjoying our time with the girls more than words can express.  We often see each other as we are "passing the keys" but it is all worth it.  We love the week nights and weekends we have together as a family of 4! 

A Long Day at Children's Mercy

Wow!  I realized that I hadn't made a post in a while but decided since it took me this long I might as well wait until today was over so I could update about Ava's two appointments at Children's Mercy.  Ava first had a 10:30am appointment at the Endocrine Clinic to check if her adrenal glands are producing the natural steroids they are supposed to even though they didn't need to for so long while she was on prednisolone.  After multiple tries of placing an IV and plenty of tears, the test was complete after having to take blood samples after 30 minutes and then again after 60 minutes of giving her a substance to stimulate her glands.  We are still awaiting these results.  They thought they would be able to call us this afternoon with these results but I guess we'll have to wait until next week.  From there we went to the Cardiology Clinic for a 1:00pm appointment to check the status of her small VSD (small opening between the two upper ventricles in the heart).  After an EKG, an echo cardiogram, and an hour wait after that, we heard that she still has an extremely small opening but nothing they are worried about.  The cardiologist said that these almost always close over time and would like to see Ava again in 2 or 3 years.  The good news is that the cardiologist also said this would not prevent Ava from becoming an Olympic champion...I guess we better get to work!  We finally got out of there at 3:00pm and guess who napped the whole way home..not mommy or daddy!

In general, things have been great at home.  Reese is pulling up on everything, crawling everywhere and wants someone right next to her at all times.  Ava is doing awesome with time off the ventilator.  We started with a few minutes off the vent about a month ago and now she spends 2 hours off the vent at a time.  Yes, that's 2 HOURS a couple times a day.  She is doing better with spoon feeding considering about a month ago she didn't allow us to put the spoon in her mouth very often but now is eating 2 to 4 oz. of yogurt, applesauce, avocado, etc. for breakfast, lunch and dinner.  She is still not crawling but is holding herself up on things while standing, gets on all fours, and rolls around a lot.  We hope that with all the time off the ventilator she will become even more mobile without having to battle all the tubing.  It's all pretty exciting. 

I've included a couple videos to show you what's been going on in our house lately!  As you can tell from the second video clip, Ava and Reese are still working on the sharing concept!

Golf for Babies KC

Some of you who follow us on this blog may already know about the exciting event Zack and I are getting involved in.  Since the March of Dimes of Kansas City doesn't already have a golf event to raise money for premature babies, we thought we would put forth our efforts in getting this started.  Zack is doing a lot of the leg work to get the ball rolling like finalizing the date, course, sponsors, and other vital components.  The other HUGE piece we are working on is simply getting awareness of the event spread out to as many people as possible.  In attempt to do this, Zack has created a Facebook page... (http://www.facebook.com/pages/Golf-for-Babies-KC/295213427180858)  Our goal is to get 500 "likes" by the end of January but we are optimistic we can get there even sooner.  We ask you to take a minute to like Golf for Babies KC so we can increase our fan base and get the word out about this great cause.  The work that March of Dimes does in the reseach and education of premature babies is very close to our hearts since Ava and Reese were born 14 weeks early.  To think about how far science and medicine has come in regards to prematurity and the fact that March of Dimes has an active role in that is amazing.  We hope to see you on Facebook!


Reese and Ava in the beginning (1 lb. 13 oz. and 1 lb. 14 oz.)...

Reese and Ava Today (One year old and closing in on 20 lbs.)!!!!