Congratulations Madeline!

We cannot let something as special as Maddie's First Communion go unannounced. Congratulations Madeline. May you always remain as Holy as you are today!

Avery likes to lay on the carpet and spin in a circle. Her head stays planted and she moves her body and does 360. She gets mad by the end... Like -"Hey... don't you see I need help here. I am trying to go somewhere and it just keep spinning" 3 weeks post- op. Avery is doing well and her adhesion seems to be mostly healed. She will cry if she smacks it a good one. I emailed her surgeon about the stitches wriggling out instead of dissolving and that they looked like whiskers. he said " the whisker look is normal" and not to do any thing to the scar like massage it. We'll do that to the next cosmetic scar. I am a bit concerned b/c her adhesion is a bit raised. I am not sure if that is normal or not. She screamed so much that 2nd week my worry was that she was pulling on the sutures. My guess is that the adhesion is not the cosmetic or "real" surgery so hopefully it will not be raised after the 2nd surgery. She does looks great and continues to do well. It's amazing to us that her face has gone through so much more than any other baby her age. If we look at her beginning pictures and one we have now.. its pretty amazing. We just hope and pray she gets the best possible outcome for both her lip and her palate. We hope and pray that this disfiguring mark on her face will not hinder her in life one bit. We hope that when she is 13 and looking in a mirror she is satisfied with herself and can embrace the fact that she was born with a cleft lip. It breaks my heart to think she'd think anything else.

Shhhh Baby's Sleeping

Avery's alternative sleep spot when necessary. I have been working hard to keep up the milk supply. The biggest obstacle in pumping enough is remembering to do it amongst the 1000 other things I should be doing and the 2nd thing is actually taking the time to do it. I always make sure I have the phone next to me so that doesn't interrupt, the TV remote handy but Avery is also very interrupting in this process. I'd lay her down for a nap and then do a few things that I need to do while she was asleep, then I'd begin pumping only to be interrupted by baby awaking from a nap. When Avery wakes up and is hungry.. she is a bear ready to eat. So now I usually pump with her near me and when she is sleepy, she just goes to sleep on her boppy. She'd probably only do this for mommy though. She smiles at me over and over as she drifts off. Here she is in the family room fast asleep. Kids can run around her, the TV can be on and away she sleeps. Not the best sleep habits for a baby, but summer is approaching and we'll be busy so this will be good practice for Avery!!!

Two Weeks Post- op!

Avery is doing so well. It's like we have a new baby in the house. For the first time in months she is happy to sit and relax by herself and loves to lay on the floor. Reflux just may be the culprit of all the insane screaming around here. We've only had normal fusses around here lately. In fact, I didn't even know what Avery's normal fussing sounded like until this week. It's so cute, it's a whiny - husky cry back and forth to let me know things are not exactly how she'd like them. I love it!
Avery still prefers only mom to feed her. She will let Jeff do it, but it's a struggle. For Example, this evening when she wouldn't take the bottle from Jeff and she was fussing, I went over to them and just rubbed Avery's' head and took the bottle from Jeff and began to feed her as he was still holding her. She took it immediately. Little Stinker!
I left her the other night for a school meeting and she was fussy for Jeff, but I was happy to not find Jeff pacing the floor with a whaling "little red tomato" in his arms. This is the nick name we gave her b/c she would scream so hard that she was red.. like a ripe o'l tomato.
I guess I am still leery that we could actually be in the clear and that we have this figured out. I also feel sooooooooo incredibly bad that we didn't figure this out sooner.
Avery is officially out of the No' No's, even at night. She just got her binki back tonight too. She's in heaven. I am not letting her go to sleep with it though- she's been doing just fine without it at night and I don't want the middle of the night binki game to start.

Well Avery, you sure have made us feel like new parents this time around. We never really felt like " new parents" the first time around with Maddie so the jokes on us! :O) We love you to pieces and are so excited that you joined our family. It's awesome to have a baby in the home. We hope and pray we've figured out what was hurting you so that you can just enjoy life as any other baby should.

Love you Avery Cakes!



Looks like a chunky monkey!!!! Seriously, we thinks she looks a bit like curious george.... in a cute way of course. Keep up the good eating Avery, I think you might be on track to move into the 50% at your next well check.

We have our happy baby back!

Well, only time will tell if Avery's problem is due to reflux. As of last night Avery has been so much better- or should I say a completely different baby. She went to bed about 9 pm and woke at 3 and then at 6:30 and went back to sleep until 9am.
If she fusses it's entirely "normal" baby fussiness. I can honestly say she's not been fuss at all this evening. Jeff had Avery for 4 hours today as I went a few blocks away to my brothers house for a wedding shower. She was fine for him, took the bottle and took two naps. Wow, what a difference. I am hoping she never gets hysterical like that again. Perhaps it was all do to post surgery issues... I am sure this is all so confusing for her. Where is my bed, what are these things on my arms that make me sweat, why am I laying this way, where's the binki people?? When I got home today, she was smiling, laying on the floor cooing and having fun.

We have her out of the No, No's now and she is not really getting at her face too much. She only messes with her incision if she is waking from a nap. I can tell she'd love to suck that thumb when she is tired. Well, all is well in a house with a happy baby. Good Night!

JMJ Pray for Us

If you've called the house chances are all you hear are screams and cries from this cute adorable little baby. Again, don't let this little smirk fool you. Today was better thanks to an overdose of gas drops and lots of bouncing, burping, and a few calls to the doctor. Avery has been terribly fussy and it seems to be from pain and not just the unusual discomforts of the No, No's and incision itching.
Yesterday was a duzy! After being fussy all day she cried.. well screamed.. off and on from 7pm to 12am. No joking- no exaggeration. Once we got her to sleep she slept all night in a elevated bassinet right next to mommy. She was so elevated she slid to the bottom of the bed. The doctor said if she is sleeping all night there is a good chance there is nothing seriously wrong with her. I am not so sure this is very comforting, but we are going with it for now. We know gas is her enemy- like it has been in the past and we are saying she has reflux. She's had two doses of the medication and if she's better by Monday we can officially say she has reflux. If not, the doctor wants to see her. She does have all the symptoms of reflux.. everyone of them.
The only thing we can think of that has changed since surgery is that she no longer gets to sleep on her belly like she's been doing since birth- (she loves pressure on her belly) and no longer can soothe herself by sucking on a binki or her hands. She misses her big crib too. We think all this time spent sleeping on her back since surgery might have made her reflux problem worse.
My poor baby just looks at me and screams like "please mommy do something" or "Don't you see I am in pain here"- Heart breaking!!! She does let up when I hold her, but if I give her to Jeff she loses it. The kind of scream that makes her choke. She only wants mommy when she is in this mode- I don't blame her.
The kids have been great.. feeling so bad for their baby sister and wanting to help. I am only getting to pump 2 times a day which is not enough.
My only saving grace is when she is upright in this baby carrier next to me. Avery loves the CD soundtrack from Curious George and also the song Burning Ring of Fire from my Walk the Line CD. She doesn't even mind if mommy sings out loud. She also likes vacuums, bathtubs, and laying naked in her crib. These things will at times soothe her. Well, It's almost 8 pm and I hear her starting up again. I pray that we figure this out.. for Avery.. for all of us!

A newborn's conversation with God

A friend sent this to me today- I love it and boy did I need to read this today!


A baby asked God, 'They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?'
God said, 'Your angel will be waiting for you and will take care of you.'

The child further inquired, 'But tell me, here in heaven I don't have to do anything but sing and smile to be happy.'God said, 'Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy.'

Again the child asked, 'And how am I going to be able to understand when people talk to me if I don't know the langu age?' God said, 'Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.''

And what am I going to do when I want to talk to you?' God said, 'Your angel will place your hands together and will teach you how to pray.

''Who will protect me?' God said, 'Your angel will defend you even if it means risking its life.

''But I will always be sad because I will not see you anymore.' God said, 'Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you.'
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, 'God, if I am to leave now, please tell me my angel's name.'God said, 'You will simply call her, 'Mom.'

Baby Jail

Here is Avery all swaddled up. We call it baby jail since we are trying to keep her hands and arms all locked up. The No No's come off on Monday and she can have her bink back at 2 weeks post op.... so next Thursday. We'll be counting the minutes. A clean bill of health was given to Avery's tubes. It's too early to do another hearing test. Avery never passed her hearing screening in her right ear, but it's most likely due to the fluid.

Her Plastics Doc said all looked very good and he feels she'll have a great result from the next surgery in late June or early July- Oh that seems too soon to go through all this again... yikes! We asked this fine doctor about whether or not cleft children are naturally fussy. They don't like change and we keep changing everything on them is what he said. They just get used to the appliance, then we take it away, bink, same thing, etc. They spit up and out their nose- it feels yucky. etc, etc. At this point there should be no pain from the surgery except the itching of healing. Avery is totally swatting at her face a lot with the No No's. She smacked herself a good one in the car today. She likes it when I itch all over her eyes, the bridge of her nose, and as close as I can get to the incision.

We put a call in to Avery's pediatrician about all the fussy fussy times here in this house and she thinks it's work a try with the reflux medication. Hmmmmmm, well, I am not a fan b/c it seems to be way over prescribed, but at this point I think we might need to try it- lets face it I am desperate!!!:O) If anything to rule it out would be nice. I have always felt that when a baby's needs are being met and they are still fussy.. there IS something else wrong ( with the exception of normal fussing that all babies have at times) Well, I hope that with the binki back we can gain some a little more sanity back and I am dying to see my happy baby again. We only get a few smiles here and there and usually it's when we let her lay naked and play.

Looking Good

Avery above in the arms of Grammy! We loved every minute Grammy was here. It was so nice to have an extra hand to help with baby or the big kids. Thanks so much Grammy for all your help this pas week. Another BIG thanks to Nana who has been at our home several times a week since I went on bed rest with Avery in November. Where would we be with out you two.. probably the loony bin! Don't let this disguise fool you!!!! This looks like a perfectly happy drooling little bundle of Joy... right...? Well, Little Miss Avery is back to her old tricks of colicky s c r e a m i n g.. off and on for hours...! We thought by the Grace of God and the good old ear tube surgery that our crying days were over.... We thought we paid our dues, Did we speak too soon..???

Is Avery just used to being so fussy and doesn't know what else to do when she needs something...? Well, I was just telling a friend the other day that all that fussiness must have been fluid on her ears b/c she has been wonderfully happy after surgery. Well, unless they got plugged by blood ( a real possibility) the fluid is not the problem. Day 5 and off most of the pain meds except a little IBPF once a day or so... the fussiness started when mom left baby with dad and went to dance with Maddie. Needless to say I called to check on baby and all I could hear was Avery's Screams... I couldn't even make out what Jeff was saying. I pulled Maddie from dance and we raced home. Avery quieted down pretty quickly in the arms of mom... pretty much what has happened all along. Is she just a mama's baby.. so much that she screams for me??? Hard to believe? Are cleft affected children just naturally fussy??? Not entirely from what I've heard. Or is there something wrong that is causing pain in this child and she just plain feels better in the arms of her mommy??

We see both our plastic surgeon and ENT doctor tomorrow. We'll post more later!

Avery with her Godmother Angie. 5th day post recovery and doing well. Her swelling is down and eating continues to be going well. Her nights and days are turned around a bit so little sleep in the House is had by mommy. Avery still looks so different to us. We've heard from our other friends that you almost mourn the unrepaired look b/c that face is the face you first fell in love with. I didn't think we'd feel that way b/c we had taped her, but she does look like a different baby to us. I guess I can compare it to a child who looses their two front teeth. That too can change their overall look as well.

The No No's are driving us crazy. Thanks Lissa and Heather for all your advice. We are now taping them in to her Pj's so they'll stay in place better. I sleep much better not worrying if they'll fling off in the night and I won't notice until it's too late.

I had them off almost all day today to give Avery's pitty's a break. - she is chafing a bit, but will be putting them back on for bedtime. We cannot wait until she will be able to touch her face again and hopefully be able to use her binki again too.

Avery, you do not like your No'No's-. We still need to watch you constantly b/c you are Houdini! You get out of them all the time! It works best if we swaddle you up with a blanket after we get your them on. We are thinking of taping them to your jammies. You're feeling better all the time. This picture is the day we brought you home.
Both Maddie and Gracie Kate cried for you when you were in the hospital. They wanted their baby sister home. They missed you so much! Your swelling is beginning to diminish. You slept great last night. We tried to move to an over the counter medication today, but you were in pain. We'll do T3 for nighttime.

Avery Is Home!

All day yesterday was a challenge to keep Avery comfortable and happy. She wasn't eating all that much at a feeding. She really wanted to suck the bottle in the middle and we cannot let her do this until stitches are healed. I think once we get to do that she will eat just fine. We basically need to force feed her by squeezing the milk into her mouth. Once she tasted her milk she calmed down and ate the best she could.We did lots of walking the halls and bouncing. Avery likes this anyways. Every time I tried to get her attention and talk to her she really cried. It was like she was mad at me. Jeff coaxed a little smile out of her though. She was super gassy from surgery and am sure she has a sore throat from the intubation, her voice was very hoarse. Her whole body is retaining fluid so she looks extra chunky! She looks so much like her mommy's baby pictures now and a lot less like daddy's. It is truly amazing how much she has changed. We are excited to see what the "real"surgery will do for her in July.Last night was great. She slept with me in a bed and slept for 3- 4 hour stretches.Here is a picture without her bandage on. We came home at 8:30 this morning.Glad to be home!
Avery you did awesome!!!! Good Job Sweet Baby!

Doing much better as of last night! Adjusting and I think the pain management was kicking in. We had some really great nurses. We held Avery 24-7!

Not a happy camper , Dad trying to comfort Avery. Wearing the No No's which come off all the time!!! We really need to watch her. Poor Baby.

Just after surgery- very swollen.

Just before I walked Avery into surgery.

One Down Two to Go!!!

Avery's doing well!!!!

Avery did wonderfully in both surgeries. The tubes were a success. Dr. T put the longer lasting tubes in so they will hopefully last until 18 months. She had fluid on both ears so her hearing will improve greatly. So glad we had them put in.

The lip adhesion went really well too. Dr. L said he was very pleased and was excited for us to see her. Even though we taped her these past few months she looks pretty different to us. She looks great! Her nose is much more shapely than we expected and her lips are stitched next to each other.

Getting her to the hospital at 6am without eating went unbelievably well. She woke at 2 for her nightly feeding and then I woke her at 4 am and gave her two ounces of pedialite. Nothing after 4:30. She slept the whole time! We only needed to wake her 15 minutes before heading up to the surgical floor. The staff was awesome.

I was so nervous for Avery. I got light headed every time I I thought of what she would go through today. It honestly did not feel like she was going to have surgery today. I think I was in denial. Kept telling Jeff I was going to faint. When it came down to surgery time I did fine. I actually bargained for the right to go into the operating room and was able to lay her down and talk to her while they were putting her under. It was hard, but I'd much rather be there than to hand her over. One hour and 15 minutes later she was done.

The first thing the recovery nurse said to us when she came to get us was.. "She's not happy" We knew what that meant..........We could hear down the hall. She stopped the minute mom picked her up.... She would fall asleep on and off for the first two hours. She is eating now an ounce at a time, but we need to squeeze it into her mouth and let her swallow, not suck. We need to avoid the incision site. In a few days she will be able to eat more normally. I don't see her having a problem- she seems to know what to do even without the appliance. Her pain seems to be in check, but I know she looks at me and is thinking... mom please do something. She whimpers every time I try to talk to her. :O(

She is tolerating the No No's pretty well. She really wants to put that left thumb in her mouth. They keep falling off. She weighed 11 lbs.... WOW- she was 10lbs. 2oz on Tuesday. Little Piggy! :O)

Well, that's it for now! Thanks for all your prayers, I know it calmed me to know there were so many people praying for her.
We'll update tomorrow morning. We have pictures but no way to get them downloaded until tomorrow night.

Prayers, Prayers and more Prayers! Please pray for a successful and safe surgery and for Avery's recovery!

Avery's Surgery is tomorrow, Thursday April 10th at 7:30 am. She will have tubes first by her ENT surgeon- Dr. T and then her plastic surgeon, Dr. L, will begin the lip adhesion. The adhesion is the first of 3 surgeries and it is more of a temporary fix. Avery will not have any work done to her nose this time and her lip will not be cosmetically repaired.

The goal of the adhesion is to "repair" the gap and then let her grow for 3 more months. This allows her lip tissue time to get used to being stretched and should then offer less tension in her cosmetic repair in July. Her nose will have more time to grow before being altered, and her surgeon feels he will have a better idea of what her nose is supposed to look like.

Avery will need to get used to lots of new things after this surgery. She will need to sleep differently, eat differently (without the appliance) and she will not have the binki for 10 days and it's possible she will not like the binki after this surgery at all b/c she will not have the appliance anymore. Her arms will be braced straight in no no's, these are baby arm splints. This is so she will not mess with her stitches. This Little Baby loves her hands and her binki in her mouth 24-7... What will we do??

We will update the Blog on Friday for sure- earlier if possible.

Grammy is in town to help out at home. Thanks so much Grammy!!!

We love you Avery Elizabeth!!!!!!

Gracie Kate turns 5 on Friday! Since her b-day falls on the the day after surgery we had the party early! We tried to get the sun to come back by having a Hawaiian beach bash. All her friends helped her celebrate. Even Avery did the Hula Hula!



Thanks Jennifer, Nana, and Grammy for helping!!

Mommy's little Butterball! Avery is as round as she is tall- we did our best to fatten her up before surgery!!! We like our babies good and plump!

3 months old!!!

Avery- Today you were 10lbs 2 oz- Hurray you made it! You jumped from the 10% percentile to the 25 for weight. We had our pre-op physical and you are the picture of health ... ready or not surgery is in 3 days!!! You did scream a bit when the dr. looked in your ear.. the one with all that fluid. Could this be the reason you get so fussy? Maybe it's the reason you do not like to lay down on the floor to play? We hope and pray that tubes will be successful and if it is causing you pain it will go away!

Avery looking like her Daddy here! She is so strong too! Loves to stand up... I think I should dig out the exersaucer.Her tape is coming off in this picture due to all the spit up that drizzles out her nose. She's been doing this weird thing where she sneezes and her eyes water after she's had a good burp or after I change her appliance. I think she is getting stuff caught up in her nasal cavity and its' making her sneeze and fee irritated.She's been happier today!!!! Lots of smiles. We are trying to keep our mind off surgery which is next Thursday at 7:30 am. I find myself running over all the logistics in my head of how we will plan her feedings so that she can have her last meal 4 hours before the surgery and how we will get a screaming, hungry baby to Children's with out going crazy. I have so much to think about that I am not thinking of any of it. I am putting it off until the night before. For now I am just spoiling this baby!!!!!!

Avery gorging herself on her 4th bottle of the night.

You can see how big her belly is.. "Little tick" Jeff calls her. Avery has had a fussy couple of days due to getting a new appliance. Every time we need to make a new one or an aggressive change is made to it she is fussy. I am sure it feels odd and weird to her. She has developed a few sores from it in the past as well, but they go away pretty quickly. It's like getting a blister from new shoes. Poor Baby!

We went in for our last appointment on Tuesday and I told her surgeon that she has been plucking out the appliance in the early morning. We'll go in to get her at about 6:30 and her appliance is gone and her tape is off...little stinker. I've snuck in to watch her and she'll play with her mouth until she gets a finger above it.. in her nostril and she pull down on it. One morning I awoke to her choking and sure enough her appliance was out! The surgeon felt it was unsafe so even though we only have less than one week to go before her surgery we had to make a new one.. bummer.

We'll be so happy we won't need to deal with the appliance after this surgery, but at the same time Avery likes it for sucking. She eats almost like any other baby with it in and loves... and I mean LOVES her binki. When it's out she is really sloshy.... gets more air bubbles and leakage out her nose.. After this first surgery she will not need the appliance anymore. We can however have one made if she presents with feeding problems etc. I guess we'll have to wait and see.

Avery is extremely attached to mommy on these nights.. We've learned I just cannot go anywhere when she needs comfort. She only wants comfort from me. .. I don't mind :O)

As I was rocking Avery last night Hayden bent down and whispered to Avery... you are the sweetest baby ever..... I love you schmugg schmugg!

Avery's wide smile!!!!!!!! Her tape came off which it often does and right after this photo was taken she urped up big time. With Cleft kids it all came out their nose and mouth at the same time. I got a picture of that too, but we'll save that for another scrapbook!

The kids all made place mats and decorations for the Avery's Baptism. As we were discussing this sacrament and what it means for Avery the kids were coloring away. They were all excited to display their work around the house. Maddie's is #1, Hayden's # 2, take a good look at # Gracie Kate's picture..... wonder what she was thinking? Cute!

We made a special cake for Avery's Baptism. It's a special event when mom makes the cake for a birthday or celebration. We are making it a family tradition to make our cakes instead of buying them. The kids all helped decorate.

Avery was Baptized this past weekend!!! We had a private ceremony with friends and family. My baby brother Mark and best friend Ang are Avery's Godparents.

I am trying to display Avery's beautiful gown and she won't take her eyes off Mama!