March 31, 2008

Starting to play a little bit.


Now that Bauer is starting to get a little more energy he's wanting to play and move a little bit. It's actually surprising this early after surgery, but he's just doing really well.

It's amazing how quickly these little guys start bouncing back. Sometimes we look at him and are so proud. He doesn't even realize all he's been through.

So to pass the time there is a whole room full of toys for the kids. Even with all the toys though I think Bauer preferred to play with the fun orange light taped to his toe and the wires hanging from random parts of his body. The light supposedly kept record of his oxygen levels, but as many times as he pulled it off I'm surprised they ever got a solid reading.

The rest of the day we spent time letting Bauer play and taking strolls down the hallway.
We were all really tired, but excited to know that we were going home soon.
By the end of the day Bauer wasn't eating too much. We figured it was just part of the normal process so we waited it out. And any eating he was doing was now by syringe. He didn't want to touch the sippy cup for now.



March 30, 2008

Continuing day 2 -- hangin' in there.


Well things are still going well. He's taking down 2-3 oz at a time during meals. It's still kind of hard for him to control the breathing and swallowing together with the packing in his mouth so we're doing a little bit of sippy cup and a little bit of syringe. He gets TONS of air down every time. Lots of tootin' going on. But that's a good thing. He did have some new lephrechaun green poo, but the nurses said it's from his morphine and anesthetics. Pretty gross!
Adam and I are pretty exhausted and are thinking about just borrowing some of Bauer's codeine tonight! Totally kidding!!! If Bauer doesn't have that then NOBODY sleeps.

Kathy, Adam's mom, gave us a few breaks today and let us go get some lunch and just sit for a little while. She's really helped us out a bunch.
Dr. Mulliken came in this afternoon and said he looks good and made another compliment about how great his lip & nose look.
We took Bauer for a little stroll today after they removed the IV line. Of course, he loved it. Guys we can't explain how the Lord is working up here and prayers are being heard and answered. All things considered this really could not be going any better. Now, it's not a picnic by any means but knowing how December went and comparing the two it's a totally different recovery. Definitley not the norm. We know the feeding, sleeping, and healing will be day by day, but already having gone through that before we somewhat know what to expect and how to approach it. We know it's the Lord bringing glory to His name. Just praying when the packing comes out tomorrow morning Bauer goes back to eating regularly and feeling even more like himself.

Through the night and next day.

All we can say is GOD IS GOOD. I wish we could put into words how well he is doing. We haven't gotten much sleep, but he is not near as fussy as we anticipated and he has already eaten 3 times. He's only taken in about 1-2 oz. each time, but it's going down. That's all that matters. HE EVEN TOOK THE SIPPY CUP ON THE FIRST AND THIRD FEEDING!! The second one his meds were wearing off and I think he was a little tender so we fed with the syringe.

Seriously, we can't believe how amazing this little boy is. God has made him so strong. He was very squirmy until and 3 o'clock and then he finally rested for about 3 hours. Hallelujah. Oh, and I ended up getting in the bed with him. It kept him calm so I climbed up in there and figured I'd get out if they brought the S.W.A.T team in. Needless to say that didn't happen. The next shift of nurses was totally fine with it. Thank goodness.

He's already tried to escape from the bed and is constantly finding a fistful of wires to grab onto. He wants to move so bad. They are suppose to take out his IV line around 10:00 a.m. and then we can take a stroll down the hallways. AND WE STILL HAVE THE ROOM TO OURSELVES!! You have no idea how uncommon that is up here. Just a God thing!!

Day 1

We are now in our room and were so excited to see that at least for now we are by ourselves. Almost unheard of up here. We'll take it as long as we can get it. I told some friends that I just want to hang a "NO VACANCY- COME BACK IN 3 DAYS" sign on the door and see what happens. It would be funny if nothing else.
Bauer is hooked up to all kinds of wires including an IV in his ankle. He's very groggy and not himself. Totally out of it. He won't eat much these first couple days because of the soreness and the pine tar taste in his mouth. He should start coughing all that stuff up soon and clear the gunk in his throat. We've heard some babies have tons that they just throw up and others just cough up little bits. So far it hasn't been anything too crazy. It is very dark so you may want to wear dark clothing when you go.
He really isn't crying too much, but he's not sleeping much either. Mainly due to trouble breathing with the packing in his mouth. I wonder how strange it must feel going from a huge whole in your mouth to a pile of crud 2 centimeters from your tongue. I'd be a little irritated too!

The hospital has now started a new policy where parents cannot sleep in the bed with the babies. I'm not excited about it AT ALL so we'll see how things go. I tried holding him in the recliner but it's almost impossilbe with the 15 million wires hooked to him. So I've tried just to hold him the best I can up next to his bed and he falls asleep within minutes. The only problem is I can't feel my back after about 10 minutes. He is such a CHUNK!!

Time to Wake Up

Dr. Mulliken came out and said the surgery went great.
* He was able to close the entire palate.
* There may be one small pin-sized whole left, but either way it wouldn't make a difference on eating, speech, etc. If anything maybe a little bit of milk would shoot out his nose every now and then. But again, it could be completely closed. We'll see.
* He placed a packing tightly inside the palate area which will stay in for 2 days. It is soaked in some kind of antibacterial solution that has the consistency of pine tar. Tastes gross and is dark red. Pretty messy.
* He has a nice full-sized uvula - sounds funny, but it's great news - Here's why: Uvula
* * He injected steroids into Bauer's lip to help with the scarring and encouraged us to keep massaging it daily

They called us back to see our little man about 6:00 p.m. He looked so sweet. His face was pretty swollen, but not near as bad as last time. It takes a good while for them to fully awake so the nurses just have us sit by him and wait. It's hard to watch him start waking because you can tell his throat is hurting, he's obviously in pain, and is somewhat confused. The nurses said that his breathing sounded great. It didn't seem like he had as much goo in his throat as other babies. We've always laughed about how big Bauer's head it, but the nurse said it probably has played in his favor because a larger head means larger throat passage which may have helped in less gunk build-up. It's so neat to think God knew this ahead of time and purposely made Bauer with a 95th percentile head for a reason. We realize it isn't soley for the puropse of this surgery, but it's not an accident either.
"For you created my inmost being; you knit me together in my mother's womb" Psalm 139:13
"..even the very hairs of your head are all numbered" Matthew 10:30
He is in control of every thing from beginning to end.

Waiting......

While Bauer is in surgery we wait in a large room down the hall. A family liaison is on duty all day to inform the patient's family of the current status in the surgical room. They come in about every 1 1/2 hours. The first visit was around 3:15 p.m and they told us the first incision was made at 2:35 p.m which meant it took an entire hour of preparation with anesthetics and what not. So now we were looking at them finishing up around 5:30 p.m. Much much shorter than the 9 hour lip surgery.


So far we had heard that the palate recovery was much worse than the lip so we just anticipated a long restless week ahead. Having already gone through one surgery I think we were a little more mentally and emotionally prepared. We knew it was simply going to stink and we'd just have to suck it up and deal with it. We also knew that within a couple weeks Bauer would be half way to recovery. I think that helped us cope. God got us through the first part and he wasn't going to leave us now.

March 29, 2008

Clown Gown Time!

Bauer got to wear the clown gown again! It's so cute that they have baby hospital robes. Makes us laugh every time. He did great while waiting. We always hope the surgeon is on-time. No matter what happens Bauer can't eat again until after the procedure is finished. So holding him off after his 3 hour mark can get a little tricky. We try keeping him occupied with toys and people, but that can only lasts so long. The anesthetiologist came through with a few other nurses and discussed with us a new technique being used to make recovery a little less painful. It's called a nerve block. He explained that the procedure involves numbing a certain nerve in the palate area. It should help with the pain especially within the first 24 hours. The advantages far outweighed the disadvantages and we agreed to it.

Our appt. was 1:00 p.m and the doctor came in at 1:15 p.m. Whew!!



Now we just had to trust that the Lord was going to take care of our little man and everything from the surgeon to the tools he used was going to be perfectly prepared and precisely used.
We can't explain the strength we felt from everyone's prayers and encouragement back home. We have such wonderful friends and family!!
So we let the nurse take Bauer and told her to take good care of him.
You just feel so many different emotions simultaneously. Fear because of the unknown, Sadness because your baby is going to be hurting, Excited because Bauer will finally be done with this stuff for a while, and even a Peace knowing that this day is actually here and it's almost over.

It's amazing just standing there thinking about everything God has brought us to and through these past 8 months. He has continually proven Himself to be the God he says he is.
"Jesus is the same yesterday, today, and forever" Hebrews 13:8 Such a comfort.

THE BIG DAY!

Our surgery isn't until 1:00 today, but we have to be there 1 1/2 hours beforehand.

Make sure before your surgery day that you go over the food regulations. Depending on your child's age and time of surgery there are certain time constraints with solids and even clear liquids.

Everything has been going well. We were cleared for surgery, the thrush was under control, and the yeast infection on his butt was almost gone....................................UNTIL THIS MORNING!!!!!

We went to change his diaper and the yeast infection was back! aaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhh!! You've got to be kidding me! I hit complete panic mode. Then right before I had a heart attack I realized there was absolutely nothing we could do but pray it wouldn't be a problem.

So around 11:00 we headed over to the hospital and within about 15 minutes they brought Bauer back to take his vitals. We showed them the massive butt funk and they said it would be fine. Thank God!! Some nurse actually gave us this random antibacterial cream, Bicatracin, to temporarily use and it looked amazingly better even after one application. We'll probably just stick to that for now.

They gave him this little wand to keep his attention while they gathered all the info. We almost had to sneak it in the bag because he loved it so much. Now all we had to do was wait to be called back to the pre-surgical area.




March 25, 2008

Pre-Op Appt.

IT'S A GO!!!! YEAH! YEAH! YEAH!!
Oh gosh were we nervous. The nurse came in, took his vitals, and asked all kinds of questions about his recent health and medications. We told her about the sinusitis and thrush and all of the meds he was taking. His vitals were great and his lungs were clear, but she was a little concerned with the thrush issue. On to the next office. Before leaving Bauer made sure he left the room in ship shape!!
On to the anesthesiologist it wasn't her call to make concerning thrush. She was mainly in charge of clearing him from any issues that would complicate the anesthesia. He did great with anesthetics last time so there wasn't any concern.

Next we saw Dr. Mulliken's nurse. I was just waiting for her to say, "Nope, I'm sorry Thrush is like the plague. We won't be able to have the operation."

Even though there was still a little bit on the side of his cheek it wasn't on his tongue or palate so she wasn't worried about it at all.

We finally got the all clear!! We wanted to just make a full sprint to the nearest exit before Bauer coughed, sneezed, farted too loud or made any other noise that would be of any concern.

We have to call today around 3:00 p.m. to find out what time the surgery will be.
For now we are just hanging out in the hotel room.

Boston Bound - Take 3

Here we go again. Our flight left Orlando at 7:30 a.m. Bauer did great, but I could tell this time the pressure on the way down was bothering him. We tried to just get him to take what we could out of the sippy cup. Seemed to help.
I accidently left his clothes attached to his backpack carrier which had now been put under the plane so we were hoping that his little tummy wouldn't prove itself explosive once again. Thank goodness he was fine.
Once we landed we all bundled up for the 40 degree weather and headed for the hotel room.

Adam and I both agreed how much pressure we felt come off our shoulders just finally getting to Boston.

We had our ENT/audiology appt. today at 2:30 p.m. They were going to decide if tubes would need to be placed in Bauer's ear during his palate surgery.
The doctor said Bauer did have a little bit of fluid on each ear, but it wasn't bad. We are hoping that some of the fluid is from the cold he just got over 3-4 weeks ago.
After his hearing test the audiologist also said there is a little bit of hearing loss, but nothing permanent.
So based on their information and suggestions/personal opinions from family, friends, and the doctors/nurses we have decided not to have the tubes inserted at this time.


Bauer hasn't ever had an ear infection and I got the feeling that the doctors were a little surprised that the test results weren't worse. In fact, the ENT actually said that if we didn't have surgery in 2 days she would just tell us to come back in a couple of months and we would re-test and decide if Bauer's fluid continued to increase and hearing decrease and then decide on the tubes.
In short, all went well and we've passed the first bump in the road.

Tomorrow we will have our pre-op evaluation and they will let us know whether Bauer is clear for surgery. After the thrush and sinusitis we are a little nervous, but just hoping and praying that they will give us the "thumbs up".

Bubble Man!

I think one of the hardest parts about Bauer's surgeries is keeping him from getting sick beforehand. As much as you try to keep them in a bubble it seems like something always try to break through. Within the last month Bauer has had a mild case of sinusitis and within the last week had Thrush. He had a weird rash on his butt and we treated it, but it wasn't going away and then one of the nurses in Boston said it may be a yeast infection and if so to check his mouth for thrush. Sure enough I open his mouth and there are white spots on his cheeks. It's a wonder I haven't had a complete heart attack this week. I'm sure those closest to me would agree I've been a little tense lately :) "Cast your cares upon Him" (1 Peter 5:7) has come to a whole new level lately. At one point I remember saying, "Well, Lord, there's nothing we can do about it except treat what he has and hope it goes away."
Thank God we have one of the best pediatricians you could ever ask for. She is always willing to have us come up and check Bauer out at any time. We really appreciate everything she does for us. We call the minute ANYTHING seems off when we are this close to leaving.
So treating Bauer for the Thrush and yeast infection on his bottom this past week has been quite the fun. We started off having to drive to Hardee County to get the right medicines. Honestly, I would have driven to Atlanta if needed. We were down to the wire and did not want to give the hospital any reason to tell us "no" to surgery.
If your child does get sick close to the date don't give up. Get on it immediately and get them into the doctor's office. Don't wait for it to "go away". We've even had Bauer on antibiotics this past week as a preventative measure.
So now we have to get to Boston in a couple of days and get them to say he's okay for surgery.
aaaaahhhhhhhhhh!
Blood Pressure - 180/120
Heart Rate - 120 beats per minute
Nervometer - skyhigh

"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?" Matthew 6:26-27

Wow, have we had to remind ourselves of this on a daily basis.

SOUP UP THE ARTS!!

Our local high school art club annual community project is called Soup Up The Arts. The students create and sell hundreds of soup bowls for a charity of their choice while also displaying other works of art designed throughout the year. It's a really fun night and we were honored to be chosen as one of the proceed recipients.
The customers pay $10 and they receive a home-made bowl, soup, bread, and drink donations from businesses and individuals within the community. The students and teachers worked for months getting this prepared. We are so thankful for their time and love. We can't tell you how much we appreciate it!! Thank you.
Bauer had so much fun watching everyone. Again, we can't wait until he can understand the amount of support and care people gave towards helping him. Absolutely amazing.

SIPPY CUP!!

Oh dear Lord. We knew Bauer would have to be off the bottle and on the sippy cup by the time surgery came around. Thank you to all the moms who have "been there, done that" and helped in getting us off on the right foot.



We found the Nuby Soft Wide Spout Insulated Cup worked best for us, but your child may like something else. There are many cups to choose from. Since Bauer can't actually suck yet, we chose the soft nipple because when he bites down the formula is released into his mouth. We did have to cut the valves to help the formula flow better. If we didn't cut them enough the formula would barely drip and Bauer would get frustrated. We cut some too much and Bauer gagged. After working with it we finally found a cut that worked. We liked it because the nipple is wider and when Bauer tilts it back the liquid doesn't go all over the place. This picture shows that it also fits the sippy with a handle, but we noticed that the rings are different and it spills a little bit if you interchange the rings. We decided to stick with the insulated cups to prevent mixing them up.


We started off just letting Bauer taking some apple juice out one of the sippies. He loved the juice and got used to the new nipple. Being something foreign he wouldn't ever take a whole lot from it. But one day we were just letting Bauer play with the sippy and my brother went over to hold it for him and he finished the entire thing. aaaaaaaaaaaaaaaaaaaahhhhhhhhhhhh!!! Now we knew he could do it. The only negative thing about the juice was he expected that to be in his cup and when we started sneaking in milk he knew something wasn't right. We are not sure, but the formula appeared to curdle when mixed with the apple juice. We could not find anything online about it, but we stopped mixing them just in case.


I've heard people say that God shows you things about yourself through each child. Well, this child has shown me that I don't have quite as much patience as I would like. I wanted Bauer to get this whole sippy thing so bad. There were times he would just hate the thing and wouldn't want anything to do with it. I wanted to chunk it through the window because I felt so stupid for not being able to help him get it. I realized quickly that the bottle was just a comfort for him and babies are not very crazy about changing anything. So we slowly kept working on it and tried to stay calm with the whole thing. Over about a 3 week period he gradually kept cutting out bottle after bottle. His 5:00 a.m was always the one he refused most, but then one morning he just took it with no problem. I COULD HAVE THROWN HIM IN THE AIR AND DONE A BACK FLIP! Seeing as how this would have scared the crap out of him and put me in the hospital, I stayed calm and he finished the cup. It was February 26th, my birthday, when he finally went an entire 24 hours without a bottle. Happy Birthday to me!! There was no way in heaven we were ever going to put a bottle near his mouth again because we knew he was completely capable.


One of the best places we found answers was at http://www.cleft.org/ . Go to the discussion list and check out some of the topics. If you don't find an answer type in your question and normally someone will answer with their suggestions. It helped us so much.


The most important things to remember are:


*stay calm - don't throw cups across the room - :)


*try different sippies - it's expensive, but you'll be amazed at the difference.


*ask other moms about their experience


*start early - give yourself and your child time to get use to it. they don't like change any more than we do.


*pray for patience and don't panic. They are completely capable of doing it.



Oatmeal only please.

I have no idea why we haven't tried this before now, but one day I realized we have never given Bauer oatmeal by itself. We've tried rice, fruits, veggies, and oatmeal mixes which he loved, but couldn't ever keep out of his nose. It usually lasted about 5 bites and things started exploding from his nostrils.














But for some reason the straight oatmeal bites stayed down and he loved it. He loved all the other stuff, but obviously couldn't ever finish the whole bowl. We were so excited. We could still work on the spoon technique and he was more satisfied after meals. Yeah!!
So if you child is still not able to keep solids down keep trying new combinations. Hopefully, something will work. If not, I've heard from plenty of people that it's okay. They will eat just fine after the palate is fixed. Bauer usually likes the oatmeal not too thick, but not too soupy. Sounds like a very general measurement, but that's the best way to put it.

Sometimes you just have to laugh!!

Well, as always, with Adam and I it’s an adventure. We learned a very valuable lesson on this last flight………………………………………………………..BOOK YOUR FLIGHTS EARLY!!!!! I think our seat numbers were 105 A & B. Ha!! As we kept walking back towards the plane I began to wonder how far back the seat numbers really went. We passed the front and middle sections and then came up on our seats. THE VERY LAST TWO!! Yep, the seats where you can’t hear anything because the engines are 3 feet behind you. That was us. Oh and there wasn’t any window. So now we can’t hear or see anything. But wait….what’s that smell????? Oh , it’s the bathroom right behind me. Yeah, that door my elbow keeps brushing up against. Oh man , we had to laugh. The only seat that could have possibly been worse was actually sitting on the toilet!!! It was pretty funny.
And once again Bauer made good use of all clothing that was packed. He peed through two shirts and two pairs of pants. All we had left was one pair of pants. No shirt. Nice. I can see the movie title now……..The Clampetts go to Boston. I could almost sense the thoughts of people in the terminal….
” That poor child. His parents should be arrested. Who brings a baby on a plane without any clothes on?” If they only knew. We were just glad it was on our way to Florida and not Boston. At least it wasn’t cold outside. You just had to laugh.

March 24, 2008

POST-OP APPT. IN BOSTON

































We are headed up to Boston for our post-op lip appt. It’s a quick trip this time. We’re going up and then coming back the very next day. It will be crazy but I’m glad we only have to stay in the hotel for a night. The flight went well and now that Bauer is in the backpack we can manage things a little easier. He loves being in that thing. Ours is an Evenflo and it works great.



Dr. Mulliken said his lip looked great. It was a bit swollen, but he said it was normal and is the worst it would ever look. So things can only get better. He mentioned possibly injecting the lip with steroids if it’s still a bit puffy when we come up for the next surgery.
He also checked out his palate and said it was a rather wide opening. I’m not sure if that’s good or bad, but I’m just going to trust that when that time comes he will be able to do what he needs to in order to fix it. Also, after speaking with his nurse, Dottie, we were so relieved to know that after his palate surgery there won’t be any more big appts. scheduled at least until he is 3 or 4 years old and possibly even 7 or 8. It all depends on how Bauer’s speech progresses and how his mouth develops concerning the jaw and gum line. So all in all it was a very good appt. Now our eyes are set on the end of March.

My new roommate!

For the next couple of weeks I am watching a friend of mine's little girl. Her name is Ellie. Bauer loves it when she comes over. I can't say that she is quite as excited probably due to the fact she has realized Bauer is either going to steal her toys, try to wrestle her, or ram into her with his car. I'd be scared too. Ha!! They really do have fun together and enjoy loading up and going on adventures.

Having fun!!

At about week 5 we could feel the pressure decreasing daily. He could start chewing on soft toys again, we didn't have to watch him like a hawk, all of his sutures were almost dissolved, cleanings were becoming less and less hectic, and most of all his arm braces would soon be dissappearing!!

Now Bauer had to get back to his regular social life with family and friends. Here are a few pics.

A FEW SCARES

The whole 6 weeks post-surgery Adam and I inspected his suture line constantly.
* What's that black dot? suture?
* Why is the lip so puffy?
* Is that a pimple coming up? (not a good thing)
* Do I need to clean it?
* Why is it so red?
* I think it's splitting!!! (ridiculous thought, but I thought it quite a few times)
* THAT'S IT!! CALL DR. MULLIKEN!!

Dr. Mulliken was always more than happy to look over our panic-filled photos and give us his opinion. Either he would say we should clean it, just keep watching, try to pull a stitch out if you can, or it looks just fine. Here are few photos we sent in case you have days when yours may look like this. If you get worried about it never hesitate to call someone. Sometimes issues come up and it needs to be addressed quickly, i.e. infection, pimples, or certain pesky sutures.

HAPPY NEW YEARS!!

Around week 3 We talked to Dr. Mulliken and he gave us the okay to take off the Logan's Bow. He said sometime if it's left on too long that the glue used to keep it in place can irritate the skin. One side was about to fall off anyway, but we put Bauer in the tub and just kept soaking the tape and pulling it off. He wasn't really excited about it, but we eventually got the beast off!!!

It really was a new face. Kind of felt weird, but it looked so wonderful. Perfect. It was a cool way to bring in the New Year.


MIRACLE! MIRACLE! MIRACLE!!

Every time Adam and I have to change Bauer's steri-strip it's so neat to see how amazing his lip looks. I just wanted to share this picture. It's truly amazing the gifts God gives people to be able to reconstruct something like this.
By the way, after about 4 weeks we took the strip off completely because it kept getting so much gunk underneath it. It was doing more harm than good between the milk, snot, and other random goo.
We were very very careful not to let him touch it with his hands or anything else. Thank God for those arm braces.

Sittin' On Up!

Yeah!! We've been helping Bauer sit up recently, but out of nowhere one day I let go and he just stayed there. He's like a little weeble wobble. So stinkin' cute. He just sits there like, "yep, that's right I'm handsome............................AND I SIT UP!!! We know what's next.......STANDING! YIKES!


March 20, 2008

Binki Blues....

Since using a pacifier would aggravate Bauer's lip the surgeon asked us not to use it. We figured out a way to use one without having anything touch his mouth, but it was getting difficult. Bauer wasn't really obsessed with the the pacifier, but he loves to have it when he sleeps.
After talking to a good friend of ours (thanks Rebecca!) and reading the research she found we decided that going "cold-turkey" was the best way. The first night Bauer cried for about an hour. Being 2:30 a.m. it felt like 5 hours, but he eventually gave up and went to sleep. We would go in every 5-10 minutes to comfort him and it seemed to help a little bit.
The second night lasted about 30 minutes and by the 3rd night he was back to sleep within about 10 minutes. We worked nap times the same way and he didn't fight it too much at all.
HALLELUJAH!! No more binkis.

MERRY CHRISTMAS!!





We've been given so many wonderful gifts this Christmas. The obvious is a completely successful surgery on our son. But also the most incredible family and friends we could ever hope for, finding the best surgeon possible for Bauer's condition, safe flights, financial blessings, great weather, relationships with new friends from all over the country, everyone remaining healthy - no colds, flus, etc., and most of all knowing that today is the day Christ Jesus was born and without this day none of the above would have been possible.
Jesus said, "I came that they may have life, and have it abundantly." John 10:10





Finally Home!!

I was so excited to feel the landing gear touch the ground I could have cried. We loaded up, found our luggage and headed home. Unfortunately it took us 2 hours to get from Tampa to Brandon. Bauer was uncomfortable, hungry, and ready to be home. He just wouldn't stop crying. So we stopped to feed and comfort him for a little while, but it wasn't quite cutting it. After we had covered all possible basis we just headed home. He finally fell asleep.

When we got to the house we took a look at Bauer's lip and knew it needed to be cleaned. BUT HE WAS SLEEPING!!! Well, he must have been in a coma because we got him out of the car, laid him on the bed, took off the steri-strip, cleaned the lip, re-applied another strip, and he never even budged!! Poor guy was exhausted.


When we took off the old strip we realized it was the first time we had seen his lip without any sutures. We both just stood there staring. Unbelievable perfection. It's truly a miracle that within 9 hours Bauer went from having an obvious abnormality to having 2 perfect lips ready to be kissed by mommy and daddy. Although I have to say we will miss kissing those big slobbery lips and that smile that was a mile wide.

We're just so glad to be HOME!!

March 18, 2008

Just a little time-out.

Isaiah 40:28 "Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary and his understanding no one can fathom."

It is such a relief to know that even when we think we can't go any further or that nobody else quite understands how we feel God does. He knows our hurts, desires, needs, weaknesses, etc. and never gets tired of meeting us where we are to help us get through it. He understands the why, what, how, and when of all situations and can get us through anything. He created and takes joy in guiding and protecting us. We've truly had to lean on His strength through this whole thing, but especially these last 9 days. I have to admit that there were times that Adam and I thought, "Are we really going to make it?" But we have and will continue to. Some days you take 1 hour at a time. Each day sheds a little more light at the end of the tunnel than the day before.

We're so thankful for that light.

March 16, 2008

Little Houdini

While we were going crazy running back forth in the airports sometimes we would look down and Bauer would have escaped from his arm restraints pulling and tugging his Logan's Bow!!


Yet another reason to
1. Put the arm bands under long sleeves
2. Use the larger diaper pins to hold them in place.

The last thing you want is to have him scratching, pulling, or even touching his lip. Also, if his hands are free then he can grab things to put in his mouth or on his face. NOT GOOD. We were very thankful and started to understand one of the major purposes for the Logan's Bow -

Protection!

Bauer - "Destroyer of Pants"

In moving up our flights we would now have a connecting flight in Cincinnati. We were rushing rushing rushing to get bags checked, boarding passes printed, babies fed, and hoping are stomachs didn't implode from hunger. :). Once we finally got everything to our gate we had a few extra minutes to get something to eat. PRAISE JESUS!!

BUT WAIT..............What's that stuff on Bauer's pants??????? OH NO!! I ran to the bathroom as fast as I could. We'll keep this short and sweet...............Bauer came out with a whole new outfit and the old one was thrown in the garbage (trust me. it wasn't wasteful. it was for the good of all people in the airport). If I had that yellow tape used at crime scenes I would've completely dressed the bathroom door with it. Unfortunately some poor soul was soon to step into the disaster zone. I think Homeland Security entered the bathroom when I left!!! :)

Okay, so now we were changed, fed, and ready for lift off. Whew!!
We were so excited to be on our way home. All was going well and then it happened.....................
BAUER EXPLODED AGAIN AT 36,000 FEET!!!!

Adam and I just said, "You've got to be kidding me!



We weren't changing him in the bathroom because it would have been like changing him in a broom closet! So we took a blanket and went to the front of the plane where you exit and changed him. As we are bending down trying to keep from crying laughing I know people on the plane wanted to kill us. The smell alone probably made a few people pass out.

My back was to the exit and all I could keep thinking was, "please God, don't let my butt hit the bar that opens this door." I really didn't want to be sucked out of the plane at that moment.

Again, we know God was letting this happen to give us a laugh and relief. We needed it. And, of course, Bauer was loving every minute.

March 14, 2008

Bauer loves to fly!

We are so blessed that Bauer has always done well on the plane. He's never had any issues with his ears. We try to make sure he's eating every time we take off and land. Nine times out of 10 he falls asleep when he's done.
Of course, he loves to "people-watch" and wants to make sure everyone is where they need to be. He's such a ham!!
By this time he was also off the codeine and only on regular tylenol. You can see he just keeps looking better and better. The restraints are really bothering him too much either. We're anxious to see how sleeping goes when we get home.

Evenflo

Before having a baby I had never even heard of the brand Evenflo. You always here the names Graco, Safety 1st, Eddie Bauer, Jeep, or maybe Cosco.

Adam's sister gave us her stroller to use until we needed a new one. We figured it might last a month or so since it had already gone through the strain of one baby. Wow were we wrong.

This stroller made it through 4 trips on an airplane, hotels, escalators, dirt roads, being thrown in and out of the back of a truck, pounds and pounds of luggage, and one heavy baby. Not once did it ever give in. We did finally look down one day and noticed the wheels starting to bulge outward because of what we had put it through, but if we could have taken it in for a tune-up it probably would have lasted another 5 months or so.

We highly recommend Evenflo products. They are very well made, practical, and well priced.

This stroller always gave us a good laugh because it was like it was on steroids. It could carry anything. But we sadly had to chunk it after this trip. It would have been borderline abuse on the stroller to keep using it.
This picture just doesn't do it justice.

March 13, 2008

Totally a God Thing!

We got finished a little earlier than we thought we would with the suture removal. We've called the airlines in the past when this has happened and it was going to cost extra to have our flights moved up, but we figured, "What the heck. We'll try again and see what happens. The Lord may open up something."
I couldn't believe it!! I remember the Delta clerk saying, "Yes, we can move your flights up and it won't cost anything extra." Thinking it was too good to be true I was pretty sure he was going to continue with, "But the only seats we have available are with the livestock." Honestly, I think we still would have gone.

So he says "We have a departing flight at 1:30 p.m." IT WAS 11:30!!!! Aaaaahhhhhh!!! Adam and I hurried back to the room and packed up our stuff in about 15 minutes flat. We crammed stuff in our bags like crazy people. Absolutely NO organization whatsoever. Every time I thought we were done I'd look down and there would be 1 shoe, a bottle, or just random clothes that we missed and we'd have to find some creative way to shift and shove!! It's amazing how many things you can get to fit into 1 bag. Especially if you sit on it to zip it closed!!! By the way, Bauer napped the entire time. We were making so much noise I know the Lord had angels covering his ears. So we threw all the bags together and waited downstairs for the taxi.

March 12, 2008

SUTURES OUT!

Well, here we go again. We had to make sure we fed Bauer no less than 3 hours before the suture removal b/c even though it was only about a 20 minute procedure they still had to sedate him. You should receive information like this and more in a packet from your hospital about 2 weeks before going in.
Bauer can only have clear liquids 3 hours before surgery. i.e. breast milk, apple juice, infant pedia-lite. Also, all of this information changes depending on the age of your child at the time of your appointment. Make sure you double check the list ahead of time b/c it could delay the surgery.

These are pics of right before and after suture removal. His lip looked amazing. We couldn't believe how perfectly it came together. There are still certain sutures on his lip and inside his nose that have to dissolve over the next couple weeks so we still have to make sure everything stays clean, but the best part is WE CAN GO HOME NOW!!

By the way, Bauer took to the bottle right after he woke up. We were so VERY VERY THANKFUL.

SLEEPING and BUTTON UPS.

We were actually surprised to see how well Bauer slept while wearing his Arm Braces and Logans Bow. At first we weren't sleeping very well b/c we were constantly up re-strapping his braces making sure he wasn't touching his lip. Usually they would just fall down his arm and eventually fall off at night. But we finally figured out that if we put them under the sleeves it was a lot less likely to happen. We couldn't have done this without the BUTTON-UP tops. I really couldn't figure out the huge advantage in having the button-ups until this point. You can't put his arm under a regular sleeve with the braces on. Babies are flexible, but not Gumbi.


With his arm under the sleeve the braces rarely fell down and he was a lot less likely to scratch himself with the velcro. Trust me, after everything he and you will go through you don't want any chance of ANYTHING messing up his lip.
We felt a lot more comfortable letting him sleep by himself with the sleeves protecting him.


DEFINITELY BUY THE BUTTON-UPS!!

Making the Time Go By

We could have probably gone home Saturday or Sunday, but the operating room wasn't available so we are having to figure out ways to help the time pass by until Monday.

For anyone headed down this road we strongly encourage to have at least 1 friend or family their to help. It's wonderful to have people there to talk and laugh with. Makes the time go by so much faster. And the extra set of arms don't hurt either!! :)

We visited a few different areas around Boston that we could go in and walk around for a while.

It was crazy with all of the extra clothing we had to keep putting on and taking off. Ourselves and Bauer!! I'm not sure that Bauer had a "good hair day" the entire time. Lots of "hat hair".


At one point Bauer decided to create a super duty diaper (that's as graphic as I'm getting)
It seems we somehow took the extra set of clothes out of the diaper bag before we left the hotel and forgot to put them back in. So basically, Bauer was naked except for his diaper, jacket, socks, and reindeer shoes and it was about 30 degrees outside. We had to laugh. At least we had the jacket and a blanket!!
As for the clothes he ruined.........they will forever stay in Boston!!

DINNER WITH FRIENDS

Saturday Karin and John, Ivy's parents, invited us to eat lunch at their home right outside Boston. It was fun getting to see outside the city life.
Karin had homemade soup ready and it was wonderful. It was nice to get a meal that didn't come from a box or bag. :) Thanks so much guys! We loved it.
The lake you see in the background was frozen over and the porch had about 4-5 ft. of snow packed down. So beautiful.
Ivy was so sweet and let Bauer use her Exersaucer. You can tell that the arm restraints haven't put a huge damper on Bauer's ability to get around and have fun. It's amazing how he has just adapated to those things.

March 6, 2008

RACE CAR!!

I couldn't resist showing this picture. We figured at some point our arms would break off if we had to hold Bauer for the next 4 days straight so we bought a little race car for him to play in at the hotel. He loved it!! Best purchase ever!!

A 2ND LOOK!

Well, we couldn't take it any more. One of the areas just wasn't getting cleaned enough and there was also a bloody spot. So we called and loaded up the whole room and headed back for a quick clean-up.
He said it wasn't as bad as we thought. I felt a huge load come off our shoulders when the doctor said we were doing a good job cleaning. I thought, "Okay, we can do this."
You can tell that Bauer's swelling had really started going down.
We were really excited to hear we could go out around town too. Yeah! Yeah! Yeah! So we left and went to the Target near-by. I think Bauer was as excited to get out as we were.

SMILES!

Today was the first time we could actually see Bauer trying to smile again. My heart melted!! We were still getting used to the new face, but that tiny bit of smile reminded us that the same sweet little guy was still there.

He was still a little bit swollen, but each day it faded more and more.

We just hung out in the room for the next couple of days. Bauer was very busy reading the paper, taking naps, and getting all kinds of goodies from friends back home. We are so blessed to have such wonderful people in our lives. Balloons, cards, flowers, desserts, home-made cookies, and get-well letters from Bauer's friends were all sent throughout the next couple of days. We also received so many loving phone calls. One of our newest friends that we've met through this whole thing even gave us a call to see how things were going. God is good!!



By the end of this first day I had already called Dr. Mulliken and his nurse a few times just to make sure we were cleaning and applying exactly how they described. The last thing we wanted to do was let anything happen to where Bauer had to go back in to the hospital.
Again, they were both more than happy to answer our questions and even said if we ever get really worried just bring him on back for a quick look. They are wonderful.



NOTICE!

The archives start with the most recent events. You must read from bottom to top.