Weekly Weight Check

I'm awake!!

Yesterday we went to the pediatrician for Ava's weekly weight check. She had gained one ounce. I was very disappointed to see such little gain, but the doctor was not concerned. She showed me a chart that compared Ava to other kids with DS. She falls right around the 50th percentile on this chart. So she is not gaining weight like a typically developing newborn should, but she is doing just fine compared to other children who are extra special like her. We will keep going back weekly to check her weight. 

Dr. G gave me the go-ahead to let her sleep a little longer at night. Woohoo! All you moms know how great that is! I have been waking her up to eat every three hours around the clock. It has been hard to wake her up during the night to eat when I just want to let her sleep. I'm hoping this will make her want to eat more during the day and will also help her get her days and nights straight. 

Fatigue and sleepiness are still our hurdles with feeding. She just gets so tired and can't stay awake long enough to take in more than 1 1/2 to 2 ounces. A 2 ounce feeding is a very successful feeding for her. We will just keep working on it! 

No more milk, mommy. (with lips clamped down)

We finally have an ophthalmology appointment scheduled for Saturday, February 2nd. We are still waiting on an audiology appointment. 

Big brother Jack continues to be helpful some of the time. When she cries, he says, "I check Aba." And he likes to rock her in her carseat and in the recliner.

Sweetly rocking sister

Taken a fraction of a second before he jerked her head support forward. Good thing babies are flexible!

Jack looking at himself on the iPhone

Hopefully I'll have a Christmas post soon. Have to get some medical bills straightened out first and try to get some housework done...boo.

Krystal 

Cardiology Clinic

This morning we went to the cardiology clinic here in Dothan. The UAB pediatric cardiologists come down here about once a month to see patients. Ava had an EKG and an ultrasound of her heart. We discussed the Tetralogy of Fallot that we already knew she had and talked about some possible scenarios for when she starts to show more symptoms. The doctor mentioned the possibility of a smaller surgery before the big surgery to place a stent in an artery. That was a little discouraging since we were hoping for just one surgery. But the plan is still to take it one appointment at a time. 

We will continue to see our pediatrician here (Dr. G) and will alternate each month going to either the Dothan clinic or UAB. The doctors have access to better technology and equipment up there, so that's why we can't have all our cardiology appointments down here. Dr. G and UAB will continue to monitor her weight gain, oxygen saturation levels, and any outward symptoms of heart trouble (i.e. labored breathing, sweating, blue spells). I do not look forward to the days when she starts struggling. But that will mean we are closer to her surgery, which will end up being a good thing. 

We are still waiting to hear back about ophthalmology and audiology appointments. 

I do not have any new pictures to post. So sorry! I know that is the best part. A blog post that is all words is so boring! Maybe next time...

Krystal

Second Pediatrician Appointment

Ava went back to the pediatrician today. She has only gained one ounce in the last week. :-( Dr. G wasn't alarmed but does want to see her back in another week to see if she has gained or lost. We are still waiting on dates for her ophthalmology and audiology appointments. Now for some pictures!

Raise your hand if you're cute...raise two hands if you're extra cute

 

"I hold Aba"

 

"No mommy" (he wanted me to move my hand)

 



This past Sunday, Ava had her newborn pictures taken by Sabrina Stephens (sstephensphotography.com). It was so nice to catch up with Sabrina and to hear stories about her wonderful kids. There are a few pictures on Facebook if you want to check her out. Sabrina did a great job! She also did Jack's newborn and 1-year-old pictures. Here are a few...

Pictures by S. Stephens Photography





 

 

 

 

 

Tomorrow we will see the pediatric cardiologist. We will pray for no problems at the appointment and for her to gain weight in the next week. Too bad she can't eat all the Christmas food the rest of us will be stuffing ourselves with!

 

Krystal

First Pediatrician Appointment

Ava had her first appointment with the pediatrician here in Dothan. Interesting how doctors want us to protect our newborns (especially ones with heart conditions) from germs during flu season, but they also expect us to sit in their waiting room full of kids with the flu. Anyways, Ava had a good checkup. She was one ounce shy of her birth weight. The pediatrician was pleased with her weight gain, which was a huge relief to us! I struggle to get her to eat and have been doubting whether she's getting enough. In the next few weeks, we have appointments with the pediatrician, cardiologist, and ophthalmologist. We are waiting for an appointment with the audiologist to be scheduled. I'm also looking into Early Intervention services. Our future will be full of appointments, therapies, meetings, etc., but they will all be steps towards helping our baby girl be the best that she can be. 

Working hard to eat

 

Resting during a feed

Jack has been a great big brother so far! He keeps saying "Aba born" and runs around the house trying to find her when we move her around. When he wakes up in the morning, he wants to see Ava. He also asks to "feed Aba" and says "I hold Aba". I wish I had more pictures of them together, but he tends to dodge pictures when he sees the cell phone come out. 

Jack has definitely enjoyed his vacation from daycare. Not only did he have a whole week to play at Bill and Pat Glaze's house, but he has also enjoyed doing fun things with his daddy. They've ridden the 4-wheeler, gone to the park, played football, gone to Walmart, eaten breakfast at Hardee's, and much more. He was not happy about going to daycare yesterday and today. 

Riding the 4-wheeler at the Kirklands'

Playing at Bill and Pat's

Park with Bill and Pat

So Jack has had some adjusting to do, but he's also had a lot of special treatment too! A huge thank you to Bill and Pat Glaze for loving and caring for our Jack Jack for a whole week. We will be forever grateful! I'd also like to take a second to thank all of our friends and family who have brought or are bringing food. It has been so wonderful not to have to wonder "what's for supper?" 

Until next time, I'll leave you with one of my favorite pictures of Ava Caroline.

A good shot of our girl

Adjusting

Having our family all together at home has been interesting, but good. Jack has had a lot of adjusting to do. He really loves his baby sister and tries to help her as much as possible...sometimes too much. But I am very relieved that he sees her as something positive. Benji has been on Jack duty while I take care of Ava. It is very, very strange to have thrown my routine with Jack out the window, but change is good. The flu is going around Jack's daycare right now, so we're trying to keep him away from that until that dies down. 

Meeting his sister for the first time

Swinging Ava "gently"

             

Our days pretty much revolve around feeding, which is not much different from a typical newborn. The difference is that she's a little behind in her skills and she needs a little extra help, like holding her chin up while she eats. She has good feeds and bad feeds, but overall she is increasing her amount. She is also crying when she gets hungry some of the time. In the NICU, she had to be woken up every three hours to eat. 

Didn't need chin support in this pic

Silly faces at 3:30 a.m.

Believe it or not, she's completely asleep

Poor attempt at a picture together 

I know my posts are getting few and far between, but I'm trying. Thank you all so much for caring enough to read the blog and see how Ava is doing. We are so blessed by her already and wouldn't change anything about her. 

'Till next time,

Krystal

Last Days in NICU

We got  home last night about 6:00 and were blessed by the Glazes bringing our sweet boy, Jack, home shortly after. There were also balloons and a "Welcome Home Ava" sign in the yard! I have my suspicions as to who was responsible for that little treat. Now I need to backtrack because I'm very behind on blogging.

Leaving the hospital

We are so thankful to be home! Though I can't complain about our stay at UAB. It was actually quite pleasant and it was easy to get into the flow of how things run and when to be where and where to eat, etc. Much of the comfort we felt would have started to wear off after this first week, though. So please stop and say a prayer for the families who are there long-term and who have much stress wondering how their babies will do each day. It was tough to walk by the other rooms and see the teeny tiny babies in the isolettes. Ava was HUGE compared to the other babies.  

Some shots of Ava's RNICU room

Ava had her newborn hearing screening the day before yesterday. I'm glad I was there with her for that because it took a long time. The equipment wasn't picking up well and electrodes were being moved around on her a lot. She passed in her right ear but failed in her left ear. We will see an audiologist in Dothan for a complete evaluation. It is possible that she failed as a result of debris in her ear or some other external factor, but it is also possible that she has hearing loss in that ear (hearing and vision impairments are common in kids with DS). Either way, we are so very thankful that she has good hearing in at least one ear. Praise the Lord for every positive piece of news!

Auditory Brainstem Response testing

Waiting & hoping for that left ear to respond

Daddy checking on things (Starbucks in hand, thanks to Hannah & Kirk)

Ava was visited by Miss Teen International, Caroline Crowley, after her hearing test! What a treat it was to visit with her and her crazy mama, Denise...aka Mrs. Whitfield (my boss and dear friend to Benji's mom and me). Caroline was in town fundraising for Children's Hospital and the United Cerebral Palsy Association.

After flip-flopping several times, the doctors concluded that Ava will see the UAB Cardiologists in Dothan when they come through once a month. Yet another answered prayer! We were not looking forward to putting Ava (or ourselves) through those long trips back and forth to Birmingham. The cardiologists in B'ham didn't have any openings until the end of December, and the ones in Dothan could see her sooner. Again, yet another detail that has worked out in our favor through this whole process. Friends and family, your prayers do not return void!!

Stretching

I had to catch up on some old information and will have to save the rest of the coming home stuff for another post. Yesterday and today have been a little hectic with a newborn and a 2 year old.

Krystal 

More Good News

Ava had a good night last night and continues to take in the target amount of 25 cc's at most feedings. She usually starts off with a bang, but then hits a wall and wants to go to sleep. So there is much prodding and coaxing needed to get a little more in before she's in dreamland. 

I forgot to say in last night's post that she moved to a regular open crib yesterday. That was a very exciting change! They also took her off of fluid nutrition, so she is getting all of her calories and hydration from the formula. She is also wearing her own clothes, which is fun. 

In a regular open crib

The neonatologist came by this morning and said that she is doing very well from a cardiac standpoint. The large hole in her heart causes too much blood to be pumped to her lungs, but the pulmonary stenosis reduced blood flow to her lungs. So guess what? Her two main defects are balancing each other out right now and allowing her to be stable! Thank you, God, for this balancing act you so purposefully designed! The neonatologist said we will need to come back up here in a week to see the cardiologist and ophthalmologist. The treatment for her eye in the mean time is just to keep in moist and put medication on it at night. It doesn't seem to be bothering her right now. We will also go to our usual appointments with the pediatrician in Dothan. Hopefully, our cardiology appointments after this first one will be in Dothan. Some of these pediatric cardiologists go to Dothan periodically for a clinic. 

We talked with a nurse practitioner who has been following Ava and were given a lot of good information about follow up appointments and about warning signs to watch for. At some point, she will not be doing this well, but we will be thankful for the stability in the mean time. 

Something else I need to mention is that Ava is just a little bit favored around here. If I had a dollar for every nurse or other medical professional who has taken the time to gush over her. She draws a lot of attention with her chipmunk cheeks and button nose! I also found out that some of the NICU nurses were holding her at night because she doesn't need to stay in an isolette like the other babies.

Who wouldn't want to hold me?

My favorite NICU nurse made this big bow hat for her

One Tough Little Girl

The Lord continues to answer all of your prayers!! Thank you to all of our prayer warriors who have lifted us up so faithfully for months now. 

Today has been a great day for little miss Ava Caroline! Our main goal for today was feeding. We have been feeding her every 3 hours and she has taken various amounts throughout the day, ranging from about 1/5 of an ounce to 1 1/2 ounces. What a champ! 

Exhausted, but content after a feed

Is that a smile I see?

Ava was eating better for the NICU nurses, so her wonderful daytime nurse and I worked together to match up how we are doing things. Ava is very sensitive to the way she is positioned. She also needs help staying awake and holding her chin up. Her heart is working so hard to overcome it's defects and supply her body that it doesn't leave much energy for eating. That, along with the low tone from the Down Syndrome, cause her to be very tired and to burn a lot of calories. So she has two big strikes against her, but she is learning.

We still haven't heard any plans regarding her eyelid. There was mention of seeing someone on an outpatient basis for it. 

Sweet little toes

We are hoping to go home on Saturday...Praise the Lord!! There was a concern today with her heart rate dropping during feedings that could delay that date, but we are hopeful that it was just a glitch with the equipment not picking up her rate. They will continue to monitor this tonight and tomorrow.  

So our current prayers are for Ava and I to continue to improve our feeding methods and to be home to our other precious baby on Saturday. I'll leave you with a few more pics and will update again tomorrow!

Krystal

Thank you, Father, for seeing fit to bless us with this child!

My heart could just burst when I walk into her room