Busy Busy

The McNeil clan has been very busy lately.  Both Zack and I went back to work last week and it has been interesting juggling our time at work and at home.  Luckily we are both blessed with jobs with some flexibility.  Zack's position as a business instructor at Longview and my position as a field instructor at UMKC make it possible to work from home some and we have also asked one of our fabulous NICU nurses from Overland Park Regional Medical Center to help us out with the girls on her days off.  God definitely had a plan for us this fall.  It has been pretty amazing how things have fallen into place so that we can both work and not feel as if we have to sacrifice our family time. 

Ava went back to Children's Mercy yesterday for a vent clinic appointment and a PT appointment.  She had some wheezing yesterday so the neonatologist decided not to make any changes to her vent settings yesterday but we are suppose to call her in a couple days when the wheezing subsides and then she will tell us what changes to make.  For now we are giving her additional breathing treatments as she needs them.  The wheezing isn't a major concern but just something we don't want to take any chances with.  The cause could be allergies, weather, etc. and we realize she may occasionally have this.  Her weight was 15 lbs. 1 oz. and we are trying to transition some of her feeds to Enfacare for more needed nutrients rather than always fortifying with Beneprotein. 

Reese is still rocking on all fours but not crawling yet.  The more I think about it the more I wonder if I'm ready for her to crawl.  It's a whole new ball game when they start crawling.  We definitely have some baby-proofing to do around our house!  She is still receiving physical therapy through Infant/Toddler Services of Johnson County, as is Ava.  It's great to have them come to our home instead of loading up for an appointment. 

Upcoming appointments include another vent clinic appt. and OT on Sept. 13 for Ava.  Reese heads back to the doctor for her 9 month check-up on Sept. 30.  Until then...we'll continue to stay busy!

Still enjoying her thumb!

Ava is doing great with this new excersice that our physical therapist showed us!

Reading books on a sunny afternoon!

How can you resist that smile?  Daddy is awesome at getting the girls to smile!

Reese doesn't see her physical therapy stretches as work as long as daddy is entertaining her!

Rockstar...

Our little Ava is a Rockstar.  Yep, that's exactly what one of the neonatologists called her today at her vent clinic appointment.  Once again she was weaned on her vent settings and has done well on them since being home this afternoon and evening.  For those of you following the numbers...her rate went from 30 to 28, her pressure control moved from 34 to 32, and her pressure support went from 31 to 29.  We are so thankful for every little move down.  Her weight was 14 lbs. 5 oz. which was a great weight gain from last time.  She also went to an OT and a PT appointment today.  We were given some things to work on with Ava at home to improve her oral and motor skills.  After a long day with three appointments at Children's Mercy Hospital, she was pretty pooped.  We've got a two-week break until our next vent clinic and PT appointments...Thank goodness!

Pooped...see what I mean!

Reese got to spend the day with Nana and Pappy.  She is getting extremely close to crawling.  She gets up on all fours and rocks back and forth but hasn't gotten the hang of moving her hands and knees yet.  Other than that, she has been enjoying the days with sissy...watching nursery rhymes, reading books, having tummy time, and of course eating and napping! 

Miss Ava has officially found her thumb!

Reading books and occasionally chewing them too!

Such a big girl on all fours!

Good Doctor Reports for Reese

Well since the last time I made a post Reese has been to the pediatrician and the orthopeidic specialist.  Both visits went very well.  Reese weighed 13 pounds 2.5 ounces and is now getting cereal twice a day.  She officially has thunder thighs and we are all proud of them!  The news from the orthopeidic was good too.  At this point they hope that her legs (knees and feet) will naturally correct themselves and move more inward as she starts crawling and walking.  We will go back 3-4 months after she starts walking so until then we will keep doing the leg exercises we have been doing. 

Ava is doing more turning to her side and doing really well on her belly.  She is pushing up more and more but still needs a little assistance getting all the way over to her tummy.  Darn tubes and wires!  She heads back to Children's Mercy on Monday for a marathon of appointments including the vent clinic, OT, and PT.  We will definitely fill you all in on how those go. 

In the meantime, enjoy the pictures of our precious girls. 

Our first experience watching a DVD of nursery rhymes.

Needless to say...the girls were enthralled. 

Ava taking a break from tummy time.

Ava REALLY taking a break from tummy time.

No matter where we lay Reese in her pack n play...she always finds a corner to bury her head.

Reese loving her play mat.

Fun times with Grammy.  Thank you to our special twin neighbor boys for handing down their toys!   

Trying to keep our hands to ourselves...

Over the last few days the girls have gotten a little more touchy with each other.  Or should I say curious?  Reese thought Ava's feet were pretty fun to play with but we aren't so sure Ava liked it based on the way she was pulling on Reese's shirt!  It appears that Reese didn't want her sister to have to sit in her chair alone either. 

Ava and Reese also got to enjoy some time with their Auntie Amber, Uncle Chad, and Cousin Brandon over the weekend.  It had been a long time since they had seen the girls and actually the first time Brandon had seen the girls in person since he was too young to go into the NICU.  How fun!

And finally, the girls got their first chance at brushing their teeth...or gums rather!  Ava seemed to like it but Reese wasn't too sure. 

Keeping Cool Indoors

Is this heat ever going to break?  Tomorrow and Saturday are going to be "cool" in the low 90s before returning to the near 100-degree weather.  The McNeil girls are ready for some walks again.  We normally were taking our walks early in the morning because it was so hot still in the evenings but this week I worked in the mornings (9:00-noon) at a summer camp so we haven't been able to get our walks in before that.  With the temps still in the 90s at 8pm, our walks have been nonexistent this week.  We are all excited to get out and get some fresh morning air real soon!

Ava's appointment yesterday went really well.  The neonatologist lowered her vent settings a little again and she has continued to do well with them today.  Her pressure control was moved from 35 to 34 and her pressure support went from 33 to 31.  We're excited for any little moves we can make.  They also increased her volume of her feeds to 130-135 ml seven times a day.  She gained weight but they'd like to see a little more.  She tipped the scales at 13 pounds!  We will return to Children's Mercy on August 15th for PT, OT, and vent clinic appointments.  Yep, an all day event! 

Reese is doing well also.  She tried out the excersaucer for the first time yesterday and had a lot of fun.  Ava is still just a little too short for her feet to touch the bottom though.  Reese goes to the pediatrician on Wednesday and then the orthopedic specialist for her feet (out-turned) the following week.  She is rolling over all the time and is doing really well with her cereal before her bedtime feeding.  We also got the doctor's orders to discontinue the apnea monitor when she is sleeping at night.  No leads or wires at any time for Reese!  That's a pretty big deal for us. 

We feel so blessed to have two beautiful girls home with us.  God has brought them so far and we are forever thankful for that.  As parents it's hard to place your children in someone else's hands but the sooner we give God the control, the better off everyone becomes. 

Update from the McNeil Household...

Sorry it's been so long since I've updated.  No good excuse, just haven't made the time to do it.  We've had a good week.  We had a couple birthdays over the last week though.  The girls turned 7 months old on Wednesday (July 20th) but no big parties.  Grammy also had a big birthday...60 years old!  Ava and Reese wanted to send the picture below to her since they weren't going to be with her on her big day.  Grammy loved it! 

                                      

We have also had a great time with Nana and Pappy this week.  Here is a picture of Ava and Pappy and next time we'll have to include a picture of Nana!

Specifics about the girls...

Ava - She's been doing really well.  She continues to feed orally pretty well but sometimes requires us to use her G-tube to complete her full feed.  We called the doctor on Wednesday like they asked us to but they made no changes on vent settings or anything else.  We go back to the vent clinic at Children's Mercy this coming Wednesday and we are interested to see if any changes are made.  Other than that, she's been having more awake times during the day and is pretty playful.  She is definitely a laid back baby.  

Reese - She is our punctual baby.  Every three hours she makes sure that we know it's time to feed again.  We are pretty scheduled around here, just like we got used to in the NICU.  That's okay though because it helps mommy and daddy get into a routine as well.  The neonatologists at Overland Park Regional are still having her wear her apnea monitor at night but we haven't had any alarms in a really long time.  They got a download of her monitor a couple weeks ago but we still haven't heard anything.  She is a smiley baby who is talking a lot more and getting very intentional about grabbing and batting her toys. 

That's it for now but we'll keep you posted on any other exciting things that happen around here!

P.S.  Do you think it's too early for Reese to start her own laundry?

The Ride Continues

We always said that life in the NICU was a roller coaster ride of events and emotions.  However, I'm realizing that the ride isn't over.  In fact, many parents who are reading this right now are probably thinking it's never over.  It's just part of life when you have kids. 

Things have been going really well here at home.  Zack and I are really getting the routine down and we are settling in.  Ava and Reese are making small strides every day whether it is Reese rolling over more (Yes, she is going from front to back and back to front A LOT) or Ava rolling to her side.  Ava had an eye appointment as well as a vent clinic appointment on Wednesday and everything went great.  The eye doctor is very pleased with Ava's eye development and at the vent clinic they reduced her pressure control from 37 to 35 and her pressure support from 33 to 32.  She had been off oxygen since last Friday and had no issues so oxygen is just as needed.  They also increased the volume of her feeds from 110 ml to 120 ml. 

With all that said, the roller coaster has to go down at times as well.  Yesterday I was home with the girls and a nurse and Ava had an extremely scary event.  We still are not sure what caused the episode but basically the ventilator was alarming that Ava was not getting the pressures that she needed.  We are not sure if this was due to a mucus plug in her trach, her trach tube being twisted in her airway, or another unknown cause.  To make a long story short, Ava dropped her oxygen saturation to at least the 50s (monitor wasn't getting a good read for a while), she turned blue, we removed her from the ventilator and bagged her with oxygen, changed her trach, and got her stabalized and onto the transport ventilator.  We checked the tubing on her home vent but could not find any issues so once we called the emergency vent line and the medical equipment company, we placed Ava back on that vent and it has been working fine.  Ava was extremely exhaused after the event and slept pretty well.  The neonatologist moved her pressure support back to 33 and advised us to use oxygen as Ava needed.  It was a frightening experience but we feel blessed that Ava is weathering it fine.  We would appreciate prayers that Ava fully bounces back and peace that if anything ever happens like this again, we can respond effectively. 

On a more adorable note...there are some pictures of our sassy little gals for everyone to enjoy!