April 22, 2008

So Proud!!

On the way home from the airport Adam and I just took a huge sigh of relief. We almost couldn't believe it was finally done. I remember in August crying and thinking how far away surgery was and feeling like it was never going to be over. The last 8 months of our lives have definitely been incredibly crazy, but we've finally arrived at the "end of the tunnel". At least for a good while. We look back and can't believe how the Lord abundantly provided with finances, relationships, doctors, hospitals, transportation, hotels, support from family and friends, and such a beautiful, strong little boy.

We are so proud of Bauer. He has taken everything that has been thrown at him and done so well. I've said many times how amazing it is the strength the Lord gives little ones. I know he will never remember everything that has gone on, but we will. We'll never forget how humbled we've been by his courage and determination and the flood of grace and comfort God has placed over our family.



The Lord has blessed our lives so much in one of the most difficult times we'll ever go through. I remember when Bauer was born feeling like all the joy had been sucked out of us. "How were we going to get through it? What was God doing? Why?

Amazingly, we've grown closer as a family and have come to see Christ and His promises take hold of our hearts and lives. If I've taken anything from this time it's learning to honestly and completely trust what God says. He DOES have a plan for our lives. He IS in control. He ISN'T going to leave us. If He can guide us step by step through this, He can handle my day to day stuff just as well.
He doesn't only want to be there for me in times of need, but with every breath I take. He created us and will always take care of us. He calls us his children for a reason. As a FATHER and SAVIOR He's there in the good, the bad, the ugly, the fun, the miserable, and any other day and night that comes 'round. The Lord said, "I'm the same yesterday, today, and forever." Hebrews 13:8

We are no more special than anyone else. Our situation isn't any more important than what you may be going through. We just want you to be encouraged and know that whatever the Lord allows in your life He will also supply all you need to get through it. It's not always the smoothest or easiest road. Definitley not one I would choose or even agree with sometimes, but know that He will walk beside you the whole way even when you feel alone.
Praise the Lord for His perfect unconditional love. We wouldn't have gotten through this without Him.

So Proud!

We had our post-op appt. today. Dr. Mulliken said everything look good. He saw a small amount of food that was stuck to the palate and reminded us to flush the mouth with water after every meal for the first 4 weeks. Sounds easy, but Bauer hates it!! We'll do the best we can.

We were so excited to find out we won't have to come back until NOVEMBER!!! YEAH!!

I asked about the other possible surgeries and orthodontics procedures. Dr. Mulliken kind of smiled and said, "You don't need to worry about any of that right now. That's years down the road." Part of me was comforted by that. The other part was stunned that I wouldn't have to plan plan plan for a while. We've just been in such issue-fix-recovery mode that it's hard to relax for too long. But we really are excited to know that we don't have to plan for anything big for at least 3 or 4 years. BIG RELEIF!!

These are some pics of our last night, post-op check-up, and GOING HOME!!


BEFORE AND AFTER

Bauer was having a small scream fest today so we decided to make the most of it and get a good picture of his palate. It is amazing the difference. I still can't understand how in the world this is done. This surgeon (Dr. Mulliken) has been given a miraculous gift from God. It's neat the individual gifts and abilities the Lord gives us.

April 17, 2008

Trying to get home early!

Okay so we found out our post-op check up appt. was moved up a day and we didn't want to stay in the hotel any more nights than necessary. So I called the airlines and some woman said it would be about $400 for all of us to get an earlier flight. Well that made our decision real easy. Another night it would be.... Then my grandma suggested to call again and see if someone else will give us any other options. I called back and told this girl Linda about our situation and that we would love to try and get Bauer home sooner than later. With really no questions she said, we'll let me see if I can work some magic. Next thing I know she says, "Okay, flights are changed for all 4 and I hope your son does well. Have a wonderful day." I couldn't believe it. NO COST FOR ANYTHING!!!! God just continues to supply all we need and more. Awesome!

Out on the Town!!

We had a good time today. The weather was great and we found a huge mall to stroll around for a couple of hours. They have a massive Children's Museum up here in Boston too, but I think we'll take Bauer when he's a little older during an annual visit or something.
He did so good. Took the sippy all day long, napped in the stroller, and had a great time people-watching. We're very excited we get to go home soon.

Will they ever eat?

After last night Bauer is now eating on a more regular schedule. Don't be discouraged if your child is reluctant to take in their normal about of food. It would probably amaze us to know how tender their little mouths are. I remember with the lip surgery it took about the same amount of time for him to start eating. Like I said before, you don't want them to dehydrate, but they will eat when they can. YOU WILL FIND A WAY TO FEED THEM!! Some babies only want the spoon. Some the spoon and sippy. Some the syringe and spoon. Who knows. I even had a friend of mine say they used a paper cup pinched together pouring it into his mouth. Some parents like the Ross Nipple too.

I will say that we were very glad we had Bauer completely on the sippy cup before going into surgery. So he was familiar with it and that was his new official way of eating. If you have time I would highly recommend getting them off the bottle before going. It will be one of the most frustrating things you ever do. I lost count on how many times a day I had to pray for patience, but it's totally worth it.

Some families don't have time between the lip surgery and palate. Another friend of mine had her daughter's lip done in late January and the palate in March. So she only had about 2 weeks to work with after the lip healed. That's just not possible. But I think she finally took to the Ross Nipple and did pretty good. Bauer was never crazy about the Ross. It lets liquid out way too fast for him. But some babies love it.



We had to remember advice some people gave us: JUST TAKE IT DAY BY DAY.

April 16, 2008

Sweet Lord Help!!!

Last night was one of the worst nights Bauer has had in a long while. He decided to get up at 11:00, and stay up crying until about 2:00 a.m.!!!! It turns out his appetite had kicked in and ate at 11:00, 12:00 and 2:00. I'm shocked his stomach didn't explode, but by 2:00 a.m. I would have given him a Twinkie if it meant he would sleep. I'm sure you've all been there too. After that he slept until about 6:30 and then was up for the morning time.


He slept on the floor by our bed so we were always careful to not make ANY noise. When we would finally get him settled down for 5 minutes I didn't breathe enough to make the sheets move. And every time he would start to make a little noise I would freeze and slam my hand down on Adam so he wouldn't move either. My poor husband. He really must love me. :) But I had to. Once Bauer saw the we were in the room he wouldn't give up until we picked him up and cuddled. At one point I thought, "That's it! I'm sleeping in the blow-up bed with him." So I laid there with my legs hanging off and my arms all crushed up underneath me. Someone would definitely be getting me up with a crow bar the next day.
But I ended up having to get back in bed because Bauer thought it was play time!!!
He was having a blast. Smiling, laughing, rolling all over the place, grabbing my eyes, lips, hair, blankets, etc. He clearly had forgotten that complete darkness meant "time to sleep"!!!! Thank God that the Lord never sleeps! Because neither were we and He would hear our prayers. :)


Sometimes I would get him to sleep and as soon as I put him down he would wake up crying. I decided I would just hold him all night if I had to. If only I were an elephant and could just sleep standing up while holding him!! :) He was still kind of frazzeled from the surgery and probably in a little bit of pain even with the medication and just wanted Adam or I to be there.

So we switched spots with my grandma in the living room and she took the bed. I slept in the chair as long as I could with him on my chest. As uncomfortable as it was I loved every minute of him wanting to lay there. He's never been a big cuddle bug so it was a really sweet time in some insane way. But after I lost feeling in my legs from having them propped up so long I slowly put him down on the fold-out and tried to get a little shut-eye. I think I was able to at least shut one eye and then everybody was up again! The Bible says "With the Lord a day is like a thousand years, and a thousand years are like a day." 2 Peter 3:8. I was definitely feeling the "day is like a thousand years" part. Ha! Ha!
Once Bauer was up for the day my grandma watched him for a few hours so Adam and I could go back to bed. Wow. I'm exhausted just recapping the whole ordeal. But again. When looking back. You have to laugh.

VERSE FOR THE DAY:

"He gives strength to the weary." Isaiah 40:29

SLOBBER!

BUY PLENTY OF BIBS AND
BURB CLOTHS!!!!

After the surgery the babies have lots and lots of drainage. At times it would almost be easier to just have a bucket hung around his neck! :)

Nope, that's not a string hanging out of his mouth!!!

Even with slobber he's soooooo handsome!!!

Sleepy Sleepy!

We bought Bauer a little blow-up bed for this trip. It's made to where the baby can't roll out. We tried it out once at home and Bauer was not impressed. But unless we wanted Adam rolling over him at night and nobody getting any sleep this was our only option. We put him down about 9:30 p.m. and , praise the Lord, he didn't wake up until 6:00 a.m. !!!! It may not be sealy posturpedic, but it will work!! I'm sure the codeine had a little something to do with that too. :) Whatever the reason........................WE GOT SOME SLEEP!! Here is the website for the bed: OneStepAhead.


The home-care sheet we received at the hospital said we could let him have stage 1 foods by today. So we pulled out some bananas and added some formula to make it really thin. He ate the entire box!!! YEAH!!! I think the 'ol appetite is slowly kicking back into gear. We have to be really careful putting the spoon into his mouth especially since we don't have a high-chair. I can just see Bauer moving his body real fast and me sticking the spoon right up into his palate. If that happened I'd just go ahead and check us both back into the hospital. :) One bed for Bauer, one bed for mommy.


Make sure you rinse out the mouth after eating. You are suppose to squirt water into the baby's mouth with a special curved syringe after every meal for the first 4 weeks. It keeps the food from getting stuck together on his stitches or any holes that might be there. Last thing you want is infection. I've almost decided to put that word on the same level as curse words. ha!

The syringe is kind of tricky. It's very pointy so we cut off a little bit of the end. He absolutely hates it when we do this, but it has to be done. Just be SUPER CAREFUL!!! In fact, if he's real squirmy we will just give him some water from his sippy or a spoon.



He's also playing on the floor more and more, but we've noticed he still gets tired pretty easy. I have to keep reminding myself that his little body is still in the early stages of recovery. Even as great as he is doing he still needs time to work up to his normal energy level.


April 9, 2008

We've Busted Out!!

The hotel room felt like a Sandals Resort and Spa compared to the hospital. Adam and I could finally lay down and not be in the fetal womb position!!
My grandma got up here today so between both grandmas being here Adam and I got a little bit of shut-eye this afternoon. So nice. We're so thankful they are both here. It's been a huge help.

He's still not feeding quite as much as we would like. It seems like he just wants to sleep all day. I would too if I just went through what he did. We do have to keep an eye on him getting enough fluids throughout the day because the babies can easily dehydrate after surgery. We're doing what we can.
Tonight he had some daddy cuddle time and got his first bath in 3 days. You can tell it kind of revived him. Nothing like a fresh bath!!

Packing out.

YEAH!! Today is a big day. We get to have the packing taken out and soon after we will be discharged. It seems a little early for that, but he's really doing well and we're ready to get out of here. This morning the nurses came in around 7:30 a.m. It took about 20 seconds. Bauer voiced his opinion about the whole thing very quick, but we rocked him back to sleep within about 10 minutes. He did great and was looking even better by the time we left.
We're hoping now the feeding will start going a little smoother.

From last night until about 5:00 a.m. he hadn't taken a lot of fluids, but between 7:30 and 9:30 he took in about 7 oz. He would only take the spoon, but I'm sure by tomorrow we'll be on the sippy a little more. Just know that when you get to this point you WILL be able to get them to eat somehow. Cup, syringe, Ross Nipple, Sippy Cup, and I've even had a friend tell me she used a folded paper cup. You just use whatever works!! And worst-case scenario they have to hook them back up to give fluid through an IV. But they will get the calories they need.

He's breathing better out of his nose now too.

And we finally got a roommate late last night. But they left by about 7:00 a.m. We were so happy to have the single room as long as we did.

Got Some Strollin' to Do!

Bauer started getting cabin fever after a few days. IT WAS TIME TO ROLL!!
We loaded him up in the stroller and took a million laps around the hospital. Adam walked the halls so many times at about 2:00 a.m. that he had figured out about how many feet there were per lap and then calculated the total amount of miles he had traveled. When he told me that I wasn't sure if I should be impressed or worried. :) We were both sleep deprived, but goodness gracious. This might be getting a little out of control! :)
All I know is he got super huge brownie points because he let me sleep for about an hour while he walked Bauer. Such a sweetie.



I have to take a minute and really brag on Adam. Hopefully, he won't read this anytime soon because he'll make me erase it! :) He is the best hubby I could ever imagine having. He has been such a huge support and strength through everything. I've never ever had to wonder if he was going to be there to help no matter what the reason. From changing diapers and feeding to giving up sleep so I could have a little shut-eye. He always tries to put his family before himself. God has truly given me an amazing man and I am so so thankful.

Now that Bauer wasn't connected to every wire on the 8th floor we were able to get him out and play with toys in the game room too. We set him in the bouncer thinking that he could just sit and relax a little bit. But as the bouncer came about 3 inches from the ground I figured it might be a hazard!! What a chunky monkey. They really should put a warning on those things. "LEAD BABIES BEWARE".

NOTICE!

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