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!

First Clinic Appointment for Ava

Ava had her first home vent clinic appointment yesterday and all was well.  They were very happy with her stability in the transition home and the last week.  The only changes they made were in her oxygen settings and her use of the apnea monitor.  The oxygen has been moved from .5 liters to .25 liters as of this afternoon and she has been doing great on it.  Ava also gets to be without her apnea monitor during the day but keeps it on through the night.  We will go back to Children's Mercy Hospital next Wednesday again for an eye appointment and another home vent appointment.  Mommy and daddy can't be more thankful to only be making the trip to CMH once a week for appointments rather than every day to visit their bundle of joy! 

Ava and Reese in their big-girl bumbo seats.

Hanging out together in Ava's crib!

Reese thinks if she eats enough of this rice cereal she'll get to have cheeks just like her sissy.

No Grass Growin' Under These Feet!

We've had a busy couple days.  The girls have been very active with things like stroller rides, tummy time, and SWIMMING!!!  Mommy and daddy are excited to spend the 4th of July with our little girls at home.  We'll have more to catch everyone up on later this week.  On Tuesday the Physical Therapist comes to work with Reese and hopefully evaluate Ava.  Then on Wednesday Ava has her first clinic appointment at Children's Mercy Hospital.  It will be good to hear what the doctor says about her time at home and if she makes any changes.  We'll keep you posted!