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Speech News!!!!

I can hardly believe it. I just heard Avery utter the sounds of ma....ma...ma and La...La. These are the sound we have been working on since birth under the advisement of Speech Technicians from the hospital where Avery was born. Cleft children can often have a hard time making these sounds due to oral coordination, hearing problems, etc. We had tubes put in early to prevent hearing issues and have been doing what we call "speech lessons" with Avery several times a day- usual when we change diapers. I will also ask the kids to do speech with her too. She always has watched intently and made some motions to get her tongue in the correct place, but never a real sound coming out. Wow, I am shocked - Avery is actually making sounds that any kid her age would make. The next sounds we were instructed to work on are Dah Bah. Here are a few more pictures!

Two weeks post op-pictures!

Avery you're looking great! Here you are sitting like a big girl. Rolling over from back to tummy is what you are working on these days. You get mad when you cannot do it so you arch your back and lift your butt off the ground.

No More NO NO's!!!!

We met with Avery's Surgeon today and he gave the go ahead for taking off the No No's and to resume all regular activities like eating her baby food and playing on her tummy. Avery was just giddy when we took off the No No'and let her have free reign... well almost. Dr. L warned me that her scar will look worse before it gets better. I guess it will get red and we'll see more scar tissue peak about 6 weeks and then it will get much better after that. He also says I can begin massage on the scar with a vitamin E cream or pediatric Mederma. I'll have to research out there to see what all the other mom's have used. Her cleft side also is still a bit swollen or firm. This too will take about 7 weeks or so to go down. It's from all the muscle tissue that was corrected etc. Dr. L also said he thinks we right side of the lip will be fine once she uses her lips as she begins to make movements. Smiling, cooing, talking etc. Any movement to the lip will help straighten out that right side that gets tucked under at times.

I am not letting her dig in her mouth or rub her face on the bed etc. I did let her go to sleep in her belly which she loves. She slept her 3 hour nap and was a new baby when she woke. Back sleeping just doesn't do her justice- she wakes to easily that way. HOPEFULLY we can get back to normal around here. Avery cried and cried when I left this evening. I ducked out with the girls for some needed girl time and Avery wailed for Jeff almost the whole time. The minute I came home she gave me the " I'm mad at you cry" and then was fine!!! UGH! Seriously, this is crazy. All my babies have been very attached to me and anyone who knows me knows I don't mind, but Avery this is a little crazy!

Nighttime is still a mess for Avery. She wants to be up late even when I can see she is dead tired! She gets all reved up when I try to put her down. She looks to see if Gracie Kate will make her giggle- she is a night giggler- belly laughter. She loves to watch the kids do anything silly and then just laughs her head off. As soon as I sit down to rock her legs get kicking and she does some good back bending! Grammy can appreciate that! I am sure it's all due to everything she's been through the past two weeks. I think we'll need to work on a good bedtime routine.. yeah right it's summer :O)
Well, she's down for the night and hopefully won't get up in the night!

Things are looking up!:O)

No more crying baby...
No more strep.. :O)
Avery is doing well. Soon we'll be able to regain our normal routine and attend activities.

Avery- Ava Baby- back to her old tricks

Just a quick update and new pictures. Avery seems to be healing well. We had stitches out yesterday all is well. We go back on Monday for the post op talk. Avery screamed her head off for 3 straight hours last night. Finally fell asleep in mom's arms after standing and rocking her singing Moon Moon Moon- over and over and over! I think it was 1 am when we all got to sleep. Normally mom and dad could handle this just fine, except we both have a bad case of STREP- otherwise known as the virus from hell. We think we picked it up in the dirty hospital room Avery was assigned. It was a nice large room, but boy was is nasty. I took pictures of all the gross areas as more of a joke telling Jeff if we get sick we'll have proof.. HA!!!!

Well, I am not responding well to my meds a.k.a. Deathly Ill ..... in part b/c I went in on Sat. to a local minute clinic and they told me I didn't have strep and to go home and gargle. I begged and pleaded with them to give me meds b/c I was so ill and I had a baby at home who NEEDED me and I was her food source and who cannot possible be exposed to strep for days, but they wouldn't exercise any of their God given common sense and rambled off all the junk about keeping me safe from unnecessarily exposing me to needless antibiotics. Needless to say I rushed in early Monday morning b/c I became so ill. I did indeed have strep. Haven't had it in 15 years. All the big kids are farmed out to Great Aunt Mary and Gagas in hopes that they stay healthy. Now we just need to figure out why Avery will be cooing one minute and the next is screaming. We've been giving her a break from her No No's so maybe she's mad when we put them back on?? She also seems to have an itchy face...loves when
I rub all over her forehead... Allergic to some of the meds or stuff they taped to her face? This is just like last time... Great for 4 -5 days or so and then unruly for another week. God help us figure this out. Today Avery is not screaming, but is fussy. Now we need to watch her for signs of strep. We are taking her in to her pediatrician today!

Avery is looking good, I think she will have a much better scar this time. She didn't like those dissolving stitches from the adhesion last time- made her scar more raised. This time no dissolving were used on the outside. Our only real concern at this time is that the right side of her lip seems to disappear sometimes- like is gets folded under!

3 days post surgery

Avery is doing well just 3 days post -op- we just feel so happy for her. The No No's are okay this time- now we know how to use them properly. Avery is really swollen still on the right side (her left) her cheek is puffy. It's firm to the touch and a bit yellow. The only major issue we are dealing with is constipation/ gas, lack of appetite, and not being able to put her down! Pain seems to be managed pretty well, but we are switching to just the regular Tylenol so we'll see how she does. Sleeping with her is fine, but we wake all the time b/c she still moves quite a bit and tries to itch. I want to capture a video of this b/c it is so funny to see her try to hard to get her arms to her face and one of us try to old her off. She's so strong. It seems to happen more at night. When this happens I usually clean her incision again.

For cleaning we need to use a cotton ball to get all the goop off the corners of her lips, we use sterile water solution and swabs first, then we use a hydrogen peroxide solution they gave us and dab it on the incision area and nose, then we put antibiotic ointment all over. We do this for a week and then we just do antibiotic ointment after that.
Stitches come out on Tuesday and we'll find out more about massage and scar creams then.
We'll post a better picture if we get one!

Video of Avery just before we left the hospital.

Avery had a good night last night. She slept a lot, never got up to eat, but again was up off and on for brief moments. Almost startled at times, but would go right back down. She has strider (croup like sound). She must have a swollen airway from the breathing tube. Her surgeon was not concerned. It seems to come on after she sleeps and gets better when she is awake.

More pix

Resting on Dad here... she is so full of fluid- she looks huge. Here is her cleft side.... looking good - swelling is starting to go down.
Leaving the hospital!

another successful surgery -Whew...

Eating her first bottle after surgery. She is really swollen here and really flushed. Dazed and confuesd here... still trying to make sense of it all.

Avery came through surgery great!!!!! Thanks for all the prayers, I just know it was our source of calm before the storm. Avery made it to the hospital with no tears and only started getting really hungry at 7:00- after 5 hours of no food. We walked the halls in the pre-op area to pass those few agonizing moments before we needed to hand her over. We had great staff and the anesthesiologist let me go in again. I kept saying, "Go night night mommy's monkey... & mama loves", something she hears every night. When we got into the operating room I was able to calm her by showing her all of the "pretty lights" etc. They had me sit and with Avery lying on my lap, put the mask on her, and she went to sleep. I helped them lay her on the table and got to give her one last kiss. I know lots of people say it's too hard to watch your kids go to sleep, but for me it's easier knowing that I am the last voice she hears as she is drifting off makes me relieved.

The procedure took over two hours. The recovery was difficult for the first two hours after she woke. They had me in with her as soon as she woke up and we spent another 30 minutes in recovery trying to calm Avery. She wouldn't eat right away. Once we got to her room she ate for us and did really well. We kept on top of the pain meds and she was doing well by about 5 pm- even cracked a few smiles for us! Aunt Jodi came up to help and me with Avery while Jeff had a mandatory Chief's meeting. Avery really never slept more than two hours the entire day yesterday and only 3 hours last night with intermittent sudden wake-ups. Not sure if it was pain, gas ....? She had the Jimmy legs going on and was actually quite wild and goofy on and off with crying. Her Surgeon says it's all the drugs from anesthesia.
We are home as of 10:00 today. Our Biggest challenge will be holding Avery 24-7- we'll need to sleep with her too, b/c she is already trying to grab her face, rubbing it against my chest or arms. Now that she is 6 months and so active she is so much more dangerous to herself. We cannot let her get to her face for about 3 weeks or so. We go in on Monday to get the stitches removed. It's such a miracle to me that these little babies can come through surgery so well. Avery has been so brave and just amazing for all that she has gone through.

Thanks again for all your thoughts, prayers, rosarys said, novenas, & Mass intentions. We are truly truly blessed to have so many wonderful people in our lives. We credit our faith in God, our families and our friends for getting us through the tough times these past 6 months.

Avery Stats

6 Months Old!!! Avery weighs 15 lbs, is 25 inches long, and is in the 25-50th percentile for both height and weight!
She loves her exersaucer, her crib, sleeping on her belly, her Binki, loves to hear the kids say Obeoneconobie, is a regular nighttime belly laughter, gets silly when she is tired, anything that crinkles, loves her "music class" with Laurie Burkner. Her sissies and brother, the outdoors, Loves to smile!
Avery is starting to sit, will not roll over from back to belly anymore, just yells for one of us to get her. She is very strong and loves to stand. She gets all giddy when we run her bath water Her rings are her favorite toy these days and hates to get back into the car seat. She'll do it once politely, but if we take her in and out she lets us know she is not happy!!!!!

Visiting Grammy and Grandpa in Denver

We took our first flight to Denver to visit Grammy and Grandpa! We had a wonderful time. We went to Castle Rock and went climbing on BIG rocks at Pikes Peak, we drove the Littleton where we visited the Memorial for a fallen Navy SEAL, went to the Denver Zoo, drove around downtown Denver, rested, and played SPOONS every night!!!!! Mommy still beats Daddy... every time- HA!

Pictures to come soon!

Got Milk ????? & other feeding habbits!

We sure got milk around here... just not enough of the type this little girl likes. This freezer stash is half gone. I had was producing and saving so much milk in the beginning that my mom and dad had to bring over one of their freezers. I filled two whole shelves with bricks of milk. We've gone through have the stash. This last half is not what Avery prefers. We are not sure why she doesn't like it. We think it's the consistency that bothers her.. it actually seems to make her gag. We keep thinking is it the plastic bag we freeze it in, or b/c it seems thicker?? It's a mystery... we do know that Avery will eat up any and all freshly pumped milk.... Lil' piggy!

As for other feeding habits, solids is not going too well. She likes the idea of eating food and in the beginning scarfs anything I put near her mouth.. until.... it comes out her nose which is usually 5 minutes into feeding. We use a syringe to get in some watered down cereal- if I get the syringe just right it will bypass her opening and won't come out her nose She loves custard and banana's. These slippery thicker foods are going down the best these days. Her Doctor says she doesn't need solids for nutrition at all and not to worry. It's just for texture practice right now.

Avery loves to chomp on her bottle and actually feeds her self so to speak. Her haberman special feeder has a chamber in the nipple. It allows us to control the speed in which the milk flows into her mouth. It has 3 speeds, low, med, high. Avery has figured out that instead of mom squeezing it into her mouth that she's rather do it! She now grabs the nipple and squeezes and releases, squeezes and releases over and over. She can really suck down a bottle if I let her do the whole thing. Sometimes she'll squirt too hard and it will all come flushing out her nose. This is never a problem with fresh milk... doesn't even phase her, but if it's formula or frozen it will irritate her nasal cavity and she will get all mucousy.

Avery and Mum

Avery Cakeys... I love this photo of us for several reasons... You and I were sitting alone and having a really fun time cooing and chatting here. This is the night you first gave out your belly giggles- it was to strangers no less, but still so adorable to my ears. 2nd is because nobody would even know you were dealing with clefting issues by looking at you. You have your beloved binki in and so glad we let you keep it. We will do the same after your next repair. 3rd because mommy actually looks good here. The only favorable post baby bodily feature is highlighted here..., I fill out all my shirts well these days and I still get to supply you with my milk. Milk production is still a struggle at times, but I see the advantages for you. As long as I constantly fill my belly with fluid, eat well, take my fenugreek, and pump at least 6 times a day the milk flows. You now take some formula, one bottle every other day. It's my go to solution when I am not making milk and you won't take the freezer stuff. If we strategically give you the freezer stash... aka "The Bricks" when you are super hungry or sleepy, you'll take it. Early morning feeding is best to give it to you then. Having these options has taken the stressfulness out of my pumping! The kids always are concerned about my milk production.. Mom, how was your pump this morning? Did you get enough milk? They all know how important it is to me and when I feel like I cannot continue they root for me. Hayden especially - he asks. Are you done nursing mom? ( he means pumping) Do you need to pump now mom? (Gentle reminder)

One week until surgery. We met with your ENT, Dr. T- Still love this guy..... he said all looks well in the ear department. Yeah , next check is in December. Dr. L gave the go ahead for Wed cosmetic repair. He is pleased and said you'll have lots more work done on Wed and will look even better. We discussed your palate surgery and it will be after Christmas!

Doing well Avery Elizabeth.. keep up the good work! Love Mama