Sunday, November 30, 2008

Home sweet home

Finally......we are officially all home! It has been a surreal morning with all 3 kids here. I know this sounds crazy, but the past 24 hrs. have truly felt as though we adopted Caleb. He is learning us again, and we are learning him. He has also been a very busy little boy exploring his new surroundings. I know it will take some time for everyone to adjust to our "new life, " but I am excited. The Lord has been so faithful to us this year, and I know He has wonderful things in store for us in the coming one.

In a week's time we have..........."moved twice".......traveled over 1300 miles.....and "added" baby #3. We are all exhausted and a little overwhelmed. (but in a good way) Our house is full of suitcases, bags, coolers, and boxes. However, my feelings today are different than from this time last week. I am excited and ready to tackle them all. I am not stressing over getting everything done....I know it won't for quite a while. But, little by little we will get settled again.

Caleb is still struggling with his "sickness." He has been on an antibiotic for several days now, but yesterday began coughing some and his little "voice" is all but gone. We decided to keep him home this morning. Plus, the other two were exhausted as well. I'm sure some much needed rest will be good for us all.


Saying that it was hard leaving Idalou yesterday is the understatement of the year! My parents have all but raised Caleb from day one. It's always difficult saying our goodbyes, but THIS TIME was very different. I can't even begin to go into the emotions that we all felt. Something that I cannot write about. Please just keep my parents and Todd's mom in your prayers. There is a void in their hearts that will take awhile to fill.

This entire ordeal (w/ Caleb) has so many dynamics that have truly been as difficult as some of the things we have gone through with Caed. A mommy that was still hurting from surgery had to give up her newborn to be with her son as he was fighting for his life. There was enormous peace in her heart knowing he was in the best of hands, however the pain of not being able to see him was almost too much at times. Would he even remember her? Then.....on the other side, there was a Nana & Grandaddy that put their own lives on hold, moved a crib into their bedroom and began having to parent a newborn baby. Midnight feedings, dr. appointments, teething, crawling.....all that comes during the first 10 months (alot!!) Then....the day arrived when that baby had to go back home with his Mommy and Daddy and brother and sister. The pain!!! This time the Nana & Grandaddy were having to "give up" their baby. The Mommy felt as though she was ripping their heart wide open. How she LONGED for this moment to finally get her baby back, but the guilt that went along with it. She had been away for so long. Did she even deserve to get him back? As the baby and his family drove away, the tears fell for miles. Why God? Why does the pain continue?

I know all will be ok. I know my parents will go on. Life will begin again for us all. I am eternally grateful for them (as well as my grandmother, Aunt Megan, Katie, Great Granny, MeMe, and Leann) for watching him. For loving him. For meeting every need. For filling the "void" of not having his Mommy or Daddy there for him. We will NEVER be able to express how much we love each of you and thank you from the bottom of our hearts for what you have done for us during the most difficult time of our life (thus far).



enjoying some of his new toys



only the 2nd time he has been in his highchair



exploring his brother's room



exploring some more..........



playing together!!

Thursday, November 27, 2008

Taste and see.....

Thanksgiving.......

We have been told over and over again....."Boy, do you and your family have lots to be thankful for this year!" And they are right! Yes, we have endless blessings that God has poured out to us. But....this year is not special. God did not give us an "extra helping" this time. He is the same yesterday, today, and forever. He is the same GOOD, FAITHFUL, LOVING, MERCIFUL, SOVEREIGN, and HOLY God today as He was March 1st. When things are good, we usually have lots to be thankful for.....thus loving this holiday. However, when times are tough, we generally get a selfish attitude and shake our fist at God. "How could You possibly be allowing this in my life?" I continually am learning from Todd, but one truth in particular is this: We are not to be thankful to God simply for what all He has done for us.....but rather, solely for WHO HE IS!!!!

Sure, it IS easy to thank Him when times are good. Right now in our life...things are wonderful! Caed is healing, we are home, and now can enjoy being together as a family. I have SO MUCH to be thankful for! I couldn't even begin to scratch the surface if I started making a list right now. But, I have been thinking a lot the last few weeks, we probably would not be hearing the all-familiar comment, "Y'all sure have a lot to be thankful for this year!" if we were still in Nebraska....or if Caed was lying up in a hospital bed.....or our family was continuing to be separated. It is true. That's just the way our human mind works. Good times call for great thanksgiving. But, how about thanking Him for the "not-so-good" times? (boy is this a hard thing to do!!) If we could only have the eternal heavenly viewpoint that God does? If we could only see how our "tough times" are actually those moments He is refining us....making us more like His Son. If we could only see the big picture, and see how this "trial" is but one piece of a beautiful puzzle. I do not have this down!! Trust me.....when things are bad, I quickly find myself with my head stuck in the sand. Worrying and depressed. I believe this is one of those disciplines that we should strive towards here on earth (truly giving thanks in ALL circumstances), but realizing we will never fully attain it because of our sinful nature. It will be a constant battle.

I have no idea the things that you have faced this past year. This could have been one of those "blessing filled" ones! Praise God! However, if it's like ours.....it might have been filled with lots of pain. Whether you are on the "other side" of your trial or smack dab in the middle of it, I pray that today (Thanksgiving), we would THANK HIM for our trials. Recognizing HE is in control.....He loves us (his children) and truly is working ALL things out for GOOD!!!! If we would only believe......................................

Taste and see that the LORD is GOOD!!!!!!!!!!!!!!!!!!!!!!! (Psalm 34:8)

Wednesday, November 26, 2008

Reunited and it feels so good

The road from Celina to Idalou (6 hrs.) was the longest I think we have ever been on! It was excruciating. We were getting so close to seeing Caleb, and yet the hours just seemed to go so slow. Finally.....we arrived! My parents and Caleb were in Lubbock, so we drove there to meet them. Caleb initially started crying because I think he was so overwhelmed. He had all these new people up in his face screaming for him.....ha! When we put him in our car, I felt like I had just kidnapped some little baby or that we had just adopted him or something. Hard to explain.

We had got tickets for the West Texas Polar Express tonight in Lubbock. The kids have been counting the days and were so excited for it to finally be here. So, literally, we meet my parents on the side of the road.....say a quick hello.....grab Caleb.....and off to board the train. I'm sure other people who were sitting beside us wondered why we kept "doting" on Caleb so much! ha! If they only knew!!!

The train ride was wonderful. Reagan and Caed had so much fun. If you have read the book or seen the movie.....then you have an idea what took place. The kids were encouraged to come in their pj's. The conductor came around and punched their tickets, they served cookies and hot chocolate, we sang Christmas carols, traveled to the "North Pole" and then Santa boarded the train and gave all the children a beautiful gold bell. It was really neat. A wonderful memory and especially for our family at this time.

This morning before we left Celina (as we were packing) Caed began crying that his head was hurting. This was the 3rd time in the last month that he has had a bad headache. I gave him Tylenol, told him to lay down on the couch, and even got a cool cloth and rubbed his forehead (seemed to work the other 2 times this happened in NE). The crying went on for about an hour and then all of a sudden he throws up! (A LOT!!!) I truly do not think there will ever be a time that he throws up that we don't get scared to death. Caed hasn't thrown up since we went to NE. It was just such a shock. I immediately thought it might be some "bug." Just from being around everyone at church Sunday, I thought he might have gotten something there. However, we are now leaning to it simply being headache related. After he threw up, he was totally fine. We're wondering if it wasn't a migraine possibly. I will discuss it with NE the next time they call. Caed has never struggled with headaches, but now this is the 3rd bad one this month. We have no idea. Anyway, we're just glad he got ok, and we were able to go ahead with the trip. I was sure questioning God. "How can this be happening NOW....we're supposed to go see Caleb today!!!" Thank you Lord that it all worked out ok, and we DID indeed get to see our Caleb boy!
He sure had changed!!



First family picture in a longgggg time!














Tuesday, November 25, 2008

Slowly making progress

As I go to bed tonight, I feel peace. Something I did not have last night. My mind was racing and I just had too many things on my "to do" list. Today actually was a productive day for me, even though I was only able to cross out maybe 2 things off the list. ha!

Thank you SO VERY MUCH Sarah for coming over and taking the kids with you for several hours. They had lots of fun, and I was able to run my errands much easier. When I came home, Todd had Caleb's bed all put together! My heart just melted. I keep staring at it in disbelief that he is really going to be in it soon.

We have missed that little boy more than anyone can ever imagine!!!!!!!!!!!!!!!!!!!! Thank you God that You have brought our family this far. Thank you for the sweet reunion that we hope to have tomorrow. Great is Your Faithfulness!!!!



Caed has had at least 2 baths a day since we got
to the hotel Fri. night! When he asks, I let him get in.
I figure he has LOTS of them to make up!!!!



Tonight he added a little twist to it......wanted to
wear his bathing suit!!



Getting to spend the day with his good
buddy Reid.



Finally............my baby has a BED!!!!



*we took Caed to his pediatrician yesterday for his weekly blood draw/weight check and flu shot. It was a little more difficult this time because of the "new doctor." However, I know in no time he will get to know her and the staff just like he has all the others. The "trust factor" with him does not come easy. The nurse called me today and said his labs looked great and they were faxing them off to Nebraska. He possibly also gained a little. I don't like comparing when it's different scales, so we will check it out next week. (hopefully ALL the turkey and mashed potatoes from Thursday will pay off!......we wish! If you could only see how little he actually eats at each meal. However, even in that I am counting my blessings. Many short gut children do not eat anything by mouth.)

Monday, November 24, 2008

Newborn memories

We have had a good 48+ hrs. home. Yes! I am completely overwhelmed even though I said I was going to TRY not to be. I truly have no idea where to even begin. Literally every inch of our house needs to be cleaned out. The pantry is full of food that I'm certain most of which is out of date. The kids' closets (and mine) need to be gone through. Old clothes need to be packed away before the current can be hung. Just organizing and finding a place for all of Caed's medical supplies. Not to mention the biggie.......Caleb!

It was such a warm feeling walking into our home Sat. night. Wonderful memories have been made the year and 1/2 we were ALL here. However, there is a sadness that I cannot begin to explain. This house looks as though a newborn baby lives in it.




To see his bassinet still sitting beside our bed, the newborn clothes and "supplies, " paperwork that we brought home from the hospital, a stack of those teeny tiny Newborn diapers!








Where is that baby? My heart feels as though I had a baby on Feb 8th, spent 3 wonderful weeks with him, and then................he died.




The Caleb that I know today is not that same little baby I knew so long ago. The Caleb I know today IS my baby! I feel that! However, he is not the one I remember having in this house. So much is different. So much has changed.



(Feb. 29th......24 hrs. before Caed was rushed to ER)


One of the big jobs that needs to be done is getting things ready for Caleb to come home. We have still yet to put up his crib. I haven't packed away his newborn clothes yet to make room for the new. Again, it's a hard thing to describe, but there is a deep sadness in touching any of it. I guess it is similar to after a loved one has passed away, and it takes awhile before your heart is ready to go through their belongings. That's how I feel. Like I want to hang on to that little newborn baby that was taken away from me almost 9 months ago. Hang on to those memories. Hang on to the emotions that having a new baby brought.

We will get through this too. The Lord has been faithful in every detail, and I know He will continue.




We need to get ready....................we are finally bringing HOME our new baby!!!!!!!!!!

Sunday, November 23, 2008

We're home!

WE ARE HOME!!!!!!

The kids were so excited as we pulled into the driveway. They played and played......and played some more. I don't think they need a single Christmas gift this year. All of their "old toys" have suddenly become new again.

There is so much to do, but I am desperately trying to not get overwhelmed. Just trying to prioritize and only do the things that are necessary.

We will head out to Lubbock to get Caleb in a few days. We are all SO ready!!!!!

I will post more later. Just wanted to let you know we made it safe and sound.

*drove through Norman, OK yesterday. Our car kept trying to head to the stadium, but we had to stay the course! OH.......what a heart breaker game. Never the less......we still love our Red Raiders!

Saturday, November 22, 2008

Sleepless in Kansas

It's 7 am, everyone is still asleep. I am not. My mind is racing. Today is such a big day for us. I am excited and nervous all at the same time. This will begin yet another phase in this long journey of 2008. What will it be like? Will I be able to handle all of it? Will Caed continue healing, or will there be a setback? So many questions.....so few answers. However, like I have said so many times before, it isn't our job to always "know the outcome." Our human nature wants it so desperately. We fear the unknown. And, yet God promises us over and over that He has plans for us.....He will never leave or forsake us.....He will never put on us more than we can handle.....He LOVES us!!! (how do people make it through tough times without Him???)

I have butterflies in my stomach (either that, or my blood sugar is screaming for food!) ha! Never the less, I am ready to start this day. I am ready for the 5-6 hr. drive. I am ready to walk into my home and just "take it all in." This will only be the 3rd time I've been home this year. (only 6-7 days total!) I can't begin to describe to you what that feels like. A place that should be so familiar, and yet it's not. I just want to coop myself up inside, and soak it up!!

Another reason for the uneasiness is that Caleb will not be with us when we come home today. On a day that should be so climatic, something is missing. Yes, it will be so good to be home. But, the true celebration is still days away. Caed has a dr. appt. on Mon., and since we would be heading back to Lubbock for Thanksgiving, we decided to just wait. And boy, is it hard!! (Caleb is sick right now, so we knew the best thing for him would be to just stay there and get well.)

If you are a mom, you probably remember the "nesting" phase you went through those final weeks before you brought your baby home. Well, I'm going through those emotions, and yet physically can do nothing. Instead of bringing 1 baby home.....I am bringing 3! Poor little Caleb doesn't even have a bed set up yet. The last time we were all there as a family, he had just been born, so all we had up was a little bassinet. He still has newborn clothes in his dresser drawers! Of course, as a mother, you want everything in its proper place when your children come home.

A year has almost come and gone. My closet is full of maternity clothes. Reagan and Caed's closets are also full of clothes they have most certainly grown out of. There's just so much to do (in my mind). And yet, even through this.....the Lord is teaching me. One of the biggest things I learned from living at the Lied for 3 months is we, as Americans, have way too much stuff (and space!) Sure, I definitely missed the conveniences of home, but LOVED the simplicity. We had the basics....and it was enough. I guess my viewpoint has also changed. Yes, as a sinner I will continue to struggle with the flesh....but yet I believe because of what we have gone through this past year, we've learned what's truly important in life. It's not order and structure......it's not "stuff".....it's not our calendars and the business of life. It is first and foremost our relationship with Jesus Christ! Then, comes our relationships with others. Everything else can take a backseat. So, with our current situation, I know all will be ok. We as a "new family of 5" desperately need the simplicity of just being together. Everything else will eventually take care of itself. I don't want satan coming in and unsettling my heart (& stealing my JOY!) with "things" that just don't matter..........................

Praise God from whom ALL blessings flow..................!!

Friday, November 21, 2008

1/2 way home


Our room all empty


Caed saying good-bye to one of his
nurses



Loading up



Caed's 1st bath in 3 months!
(and honestly, his 1st "real" bath
since this all began. He is finally able to sit in
water more than a few inches deep. He can
also finally enjoy it and play. Doesn't have to
hold up any tubes.)


My little Bath Boy is back!!!!!!!!

Thursday, November 20, 2008

Omaha Blessings

I cannot believe we have been here 11 weeks! When I flew out here the beginning of Sept., I thought it was for only 3-4 at the most. Some days were very difficult, but the Lord was Faithful (as always). We got into our routine, found the stores we needed, passed the time by going to the zoo, park, and other fun places, and just tried to live one day at a time. Looking at the 'big picture' was something I tried so desperately not to do. But, taking it day by day......and week by week (along with God's grace) got us through.

Omaha, Nebraska will forever hold a very special place in my heart. I know I have only been here 3 months, but it seems like much longer. I have spent many days just driving.......either because I was totally lost, or because I just wanted to see the country. It's beautiful here. God used the scenery many times to speak to me or just calm my anxious heart. As I think back over our time here, many blessings come to mind. Just like in all things, we have seen God's Hand in this from day one. I will never forget the night before we flew out. I was sitting in the office in our home in Celina, getting ready for the trip when my phone rang and some "stranger" was on the other end. ha! That was YOU Carol!! You were so nice, so giving, and appeared as though you genuinely cared (for this family you did not know). God began preparing for us before we ever left Texas.



Carol and Cordell have been a tremendous blessing to us. What special, special people they are! Truly they have the gift of hospitality. To take in "strangers" like they did is something that has spoken volumes to me. They will forever be our "Nebraska parents." God knew what we needed and He searched Omaha over.......there were only 2 people that fit the description. Thank you both for everything!!! I have had many people ask me how we knew them. Actually......we didn't! They did not know us. Their daughter attends FBC Lubbock (whom I have still never met), and is good friends with one of MY best friends. Again....God knew, and used just the right connections to get us together. We could not have made it here this long by ourselves without them. We will be forever grateful!!

We are also thankful for the connection to another sweet family, the Opperman's. Julie and I have already discussed how this is not good-bye. We will continue to stay in touch. Again, I think of this family, each one of them.....and KNOW without a doubt God hand-picked them as well to cross our path. We love you 4 very much! What amazing things I have learned from just being around you.

Having Reagan join us mid-stream was also a huge blessing! Not to mention getting to see my parents and CALEB!! There's no way I could have gone almost 3 months straight without seeing him! I am so thankful that we had the time we did. It was short but sweet. Reagan's presence has made a big difference. It has been really good for Caed and her both. Being homeschooled has allowed them to be "best buds." They are each other's primary playmate. After all this happened with Caed in March, their little worlds were turned upside down! They were immediately separated, and "normal play" between them did not resume until later this summer. (almost 5 months!) There have been many fights here.......but also lots of days filled with giggles and laughter. They have had to use their imaginations quite a bit (being so limited here with toys and space), but I pray many memories have been made.

I am also thankful for Life Spring church. To be able to be in worship every Sunday (in a town you do not live in) was such a blessing. One that I did not even think of before we came. In my mind, we were coming solely for Caed's medical needs. Did not expect to find a church that ministered to me the way this one did. God once again knew exactly what I needed and provided it 100%!! I am grateful for having a "church-away-from-home."

Above all else.......the biggest "Omaha Blessing" I can think of, is this hospital and the Intestinal Rehabilitation Program. They have had an important part in Caed's healing. They did not have "magic tricks" up their sleeve, nor did they alone bring Caed to where he is today. But.....they have added their piece to the healing puzzle. God's hand ALONE controls the different pieces. It is He who sees the big picture and is able to put each piece together at the proper time. I am thankful for these doctors, nurses, and all IRP staff that God provided. One of my big concerns has always been changing doctors and "starting over." Even though there were difficult days in the beginning, God was Faithful, and I am so grateful for the smooth transition.

Omaha has almost taken on a personality of its own. I feel like I am having to say "good-bye." I will miss this town. I have so many precious (and painful) memories here. However, just like the people here, I know this is not good-bye, but simply "Until next time......................."

Wednesday, November 19, 2008

Fall Fun













Tues. 11/18 - update



A few members of our IRP team:
Dr. Grant (transplant surgeon)....Brandi (IRP coordinator).....and Brandy (dietitian)
Dr. Mercer (head of IRP / surgeon) and 2 others stepped out right before the picture - maybe next time.

We have really grown to love these people. They have become our friends. They sure love Caed too (which always helps....ha!)

Caed's appointment went well. He gained a little more this week (4-5 ounces), and all lab work continues to look great! They want us to keep everything "as is" for a few weeks, then we will slowly begin increasing his tube feeds. He is at 100 cc. now. If we can get him up to 120, Caed will be allowed to have 4 "backpack free" hours each day!! The plan will be to slowly increase over time so he can be "FREE" all day....only hooked up when he sleeps. Then, eventually, Lord willing, we will cut those hours too. He continues to be on antibiotic therapy (for the next 6 weeks). Hopefully we can get rid of this c-diff once and for all! Caed has been having on average 4-5 stools a day. Yesterday, it was back up to 8. His diet was not different, so not sure why the change. Maybe somedays are just going to be like that. ???? Once we get home, Caed will have to go in for weekly blood draws and weight checks. We will also have to get started with a Pedi Endocrinologist.

They want to see Caed again in January. I'm sure by then......Caed will finally get to see the snow he's been begging for!!!




Just one of the many HSM3 dance shows we have daily!!

Tuesday, November 18, 2008

Happy Birthday!!



Happy Birthday Daddy! We love you SO MUCH!
See you in a few days............................

Sunday, November 16, 2008

Good 'ole Texas




Haven't seen this flag for awhile, and boy did it make me happy when I saw it. Not to mention getting to eat at my favorite place!!!! My heart is definitely longing to get back to the Lone Star State. Just a few more days..........................

Thank you Opperman's for a wonderful lunch! Call me strange, but it really did me good to eat here. ha! (and I'm not just referring to the rolls!) I love you guys and enjoy getting to know you more each time we're together.

Thank you sweet Carol for watching the kids for me this evening. They had a ball!! They truly love you both!! Thank YOU for simply loving them!

**please pray for Cordell - he is down in his back.

**also pray for our good friends, Micheal and Allison. They have had a really tough time the last 3 months. They have lost 3 immediate family members (unexpectedly). They are drawing strength from God, but I know in times like this you just wonder "how much more, Lord?"

Saturday, November 15, 2008

There's something about "home"

This morning our good friend Julie called and invited the kids and I to join their family at the movies. It was cold (actually snowed a few hours), so it was a perfect day to do something indoors. Afterwards we went over to Jeff & Julie's home to let the kids play. Reagan and Caed sure enjoyed it and when I told them it was time to leave, Caed responded......"Mommy I wish you had a meeting to go to so we could just stay." ha!

There's something special about a home. Something I never fully realized until we moved here to Nebraska. It's not the new furniture, upgraded appliances, the colorful paint on the walls, or the latest decor. A true "home" has nothing to do with any of that. Those are simply things people do to their houses. Things that don't last....................

Julie kept apologizing for any messes that we saw. The piles of laundry, kids' toys, or even the few dishes in the sink weren't "messes" in my eyes. They symbolized life. A family living together under the same roof. Something I SO long for!

The past 2 months, I have caught myself looking at homes a lot. Whether they were the big, beautiful (million $) ones or a small simple house with chipped paint and a leaky roof. I have tried to picture what kind of family lives inside and the dynamics that make up their home. I remember one morning in particular, we had just taken my mom and Caleb to the airport. It was probably 6:30 am. I was stopped at a red light and I found myself so caught up in the homes that sat there along the road. Lights began coming on and you could literally see the "life" emerging inside, waking up ready to tackle a new day. It sadden me. There's just something about "home." I have tried to bring those comforts to our little room here at the Lied. But, it's just not the same. I know it doesn't matter the square footage or how comfy the couch is. You can create a "home" anywhere, right?

Then I remembered the old saying......."Home is where your heart is."

My heart is currently divided in 3 places. (Omaha, Celina, and Idalou)

I am so grateful for the wonderful answers to prayer for Caed. The light at the end of this tunnel is getting bigger by the day, and soon the 5 of us will all be home.................

Thursday, November 13, 2008

7 more days and counting....



Today was the first "real" blood draw without the line. Caed did GREAT!! He cried for maybe a second. The nurse was fast.....and his little vein cooperated perfectly. Brandi called later this afternoon and said his labs came back wonderful. Thank you God! His next blood draw will be on Mon. Not sure if that time will go quite as smooth. Now he'll know what to expect.




I have been busy trying to box up (mail) as much as possible back to Celina. There is NO way everything will fit in our car!! So far, I have 4 boxes......and there is much more. We have certainly accumulated lots from living here 2 1/2 months. Plus, we've added an extra child!

We are counting the days!! I am aching SO MUCH for Caleb. You would think since we only have a few more days here it would be easier. Actually I think it's making it harder! I miss him so very much............................. I know Todd is probably struggling worse. It's been a long time since he's gotten to see him!!! We sure need our family to be reunited SOON!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, November 11, 2008

Not the other one too!!

Not sure how much more this Mommy (turned nurse) can handle in just one day!

A few minutes ago, I turned around and Caed was whimpering holding his G-tube in this hand! My heart about stopped! I knew this was a common occurrence for kids with G-tubes, but something we hadn't experienced yet ourselves. The last couple of months I have either read or talked with other moms who would mention this very thing. I was always appalled, and would question them extensively on "how you put it back in."

Now, here's the kicker: Just today......during our clinic appt. (for some reason), I asked them again to please explain to me in detail how you fix it when it comes out. I still can't believe it!! If this would have happened two days ago, I would have been at a total loss.

Poor Caed was crying (mainly out of fear), and I was secretly a basket case inside. I was a good actress and tried to just calm him down and "act" like it was no big deal. "Mommy will fix it...I promise, it's ok." While all the while my hands shaking and mind racing.

It was easy. I knew this day would come sooner or later, but I sure wasn't expecting it to be TODAY! For a few minutes, Caed was completely TUBE FREE!!!!!!!!!!!!!!!!!!!!!

Thank you God for providing for me once again tonight. You knew.....and made sure I was prepared.



It's OUT!




Praise God! No more flushes, no more alcohol swabs, no more caps, no more blue gloves to cut (only our family understands this one), no more dreaded dressing changes or line infections...................NO MORE CENTRAL LINE!!!



Now to HIM who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to HIM be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen! (Ephesians 3:20-21)





our LAST saline flush this morning!!!!



The procedure was very quick. Caed was scared........yes, he did cry, and yes.....his eyes were as big as saucers when he saw me holding his line up, but he did wonderful!!! Mommy did wonderful! ha! I was praying right before they came in, and I kept reciting the verse "Peace be still..........." Not only did I feel HIM in the room, I know HE was! Thank you , thank you, thank you to all who prayed for us today! How blessed we are!!! Today is such a HUGE milestone and you all were right................."He's carried us this far, He's not going anywhere now." I look forward to the future when we can celebrate again with our one remaining tube!

Thank you Jesus!!!!!


Our conversation just last night:

Caed (as he's sitting on the potty): I wish I was never sick!

Mommy: Oh, but Caed you are doing so good. You are SO much better now!

Caed: yeah, but I still have these..........................(pointing to his tubes)


After clinic this afternoon I reminded Caed that HE IS getting better because he doesn't have to have the 'white tube' anymore. He just looked up at me and smiled. (something I will never forget)


One of our main prayer request would be that his labs continue to look good and for his weight to continue increasing (he gained a little this week.....few ounces).

They have decided to keep him on Vanco for a month or more. Slowly decreasing the dosage each week. They said there is a strand of c-diff going around that is pretty difficult to get rid of.

They want blood drawn Thurs. and Mon. (PLEASE pray for this too!!!.....ouch!) And we will go back to clinic next Tues. for one last visit. We will have blood drawn again that next Thurs., and then will be FREE TO GO!! Praise God!

This morning one of our friends called and came and got Reagan. I was very glad as I worried about her being in the room when the line got pulled. Her daughter is also 8 and Reagan has loved spending time with her. They went and had a much needed "Girls Day Out." I will try to post pictures later tonight. Now, we are on our way out to Carol and Cordell's for supper.

Thank you again for everything! Thank you for your support and especially prayers!

GOD IS GOOD!!!!!!!!!!!!!!!!

Girls Day Out

Reagan sure deserved a day like this. For so long she has had to play 2nd fiddle to both her brothers. What a fun day she was able to have with her new friend Katherine. Thank you SO much Julie for everything!!!!!!! You have truly been a God-send. I love you!










Monday, November 10, 2008

Mon. 11/10 - update

...keep calm and don't be afraid.....(Isaiah 7:4)

My nerves are basically shot. I feel like Caed is going in for major surgery tomorrow. I'm just so nervous about pulling the line. Two reasons: first and foremost the trauma that Caed will experience and yet he knows nothing. I have been told there is no anesthesia....no numbing medicine...just YANK! (they said they won't tell him what they are doing.....kinda like you do when you pull your child's tooth). However, just the fact that Caed will have to lie up on that table and then me take his shirt off.......just that alone will get his blood pressure up. "Pulling this tube" is something Caed has cried and cried about over the past 8 months! "Mommy, please don't let them pull it!" He is going to be SO scared tomorrow!!! The second reason I am dreading it is plain and simple FEAR! What if we're taking it out too soon? I know these drs. would not do something as major as pulling a child's line if they didn't think it was time. I know they don't just do it for the 'fun of it!' I need to trust them.



I talked many weeks ago about the game plan for Short Gut kids here undergoing rehab. 1) get them off TPN............check! 2) get them off hydration (line out)........possible check tomorrow! 3) then gradually wean them off feedings from G-tube. This is SUCH an answer to prayer. We are getting closer and closer! He's doing amazing!! His stools have drastically decreased the last several days......3-4 total!! Even though he currently is positive for c-diff again, he has made such huge progress overall. Tomorrow (pulling line) should be a wonderful - praise filled day! (I'll be praising when it's over!!) Our appointment isn't until 1:00, so please be praying that hour!!!!

I guess we will also find out how much longer they want us here. We're thinking maybe just a week. ???? I am SO ready! I am missing Todd and Caleb like crazy! Today was a hard day. I think we were all getting cabin fever and quite honestly just getting on each other's nerves. There's no where to 'get away' here. You are stuck with each other all in the same room. I
also am just getting so tired of feeling like I'm camping out all the time. ha! Fixing my kids' lunch on the bathroom vanity is not fun!! ha! (in case you're wondering why.......the "kitchen" plugs are not working for some reason)



Just really missing those simple things we take for granted......a comfortable bed, a BATHTUB, a kitchen and full size frig, being able to get in your car without having to walk a mile, letting the kids run or jump (can't do that here because we have neighbors underneath us!), talking to Todd face to face, and rocking my sweet Caleb to sleep. This all is getting really old, so I'm praying our days here are coming to an end. Although in the same breath, leaving here means leaving our wonderful new friends the Bullis' & Opperman's. BUT....knowing we will be coming back to Omaha regularly eases my heart. They have become our forever friends!!!!

**this is a little off the subject, but needed some advice out there. I was looking through all my pictures / camera cards. Caed was sitting up on the bed with me. When I went to put the current card back in my camera, it wouldn't work. All of a sudden Caed says, "I didn't lick it!!" ugghhhh! I wanted to laugh, but I was too sick at the time thinking all my pictures are forever GONE!!! (no wonder the child has c-diff!!!!) ha! Anyway, has this ever happened to any other moms out there? Are my pictures GONE????................................................................ (and no I didn't upload any of them to my computer!)

Saturday, November 8, 2008

Sat. 11/8 - update

We've been here almost 9 weeks now! I can't believe it. Again, this is going to be something that is hard for most to understand, but Omaha has kinda become "home" to me now. I don't really feel like a "tourist or visitor" anymore. I truly have had many homes this past year. At one point, the 3rd floor of Covenant Children's became home. Then, this summer it was Idalou. Now, Omaha and the Lied have taken over. One of our IRP nurses made the comment last week when Dr. Mercer said we were getting close to going home, ....."wherever that is!" In some ways I agree. We have truly lived through a whirlwind the last 9 months, and my life back on Doloris Ct. in Celina seems like an eternity ago. I do however LONG to get back and start our new life as a family of 5. In my mind I am already preparing for the move back. Oh! So much to do....and at a very stressful time (December). Not only is there Christmas, but also my birthday and Todd and I's anniversary. Truly.....it will be like MOVING!! We don't just have a couple of suitcases to load up and bring home. We will have been gone almost an entire YEAR! I'm trying not to stress about all that involves (not including all Caed's medical stuff that will need to get set up in Dallas), but instead just try to enjoy our family being back together. This is SO hard for me! My 'Type A' personality is screaming inside. I do not like change, and yet I have to laugh at this past year and the continual 'changes' that I have had to adapt to. Do you think God is trying to stretch me in this area? ha! I'm trying to not worry about Christmas. In fact, this will probably be the most meaningful year for us. Not that decorating trees, the house, all the lights, shopping, baking, exchanging gifts, and mailing out Christmas cards is a bad thing, ......but it sure causes the holidays to be hectic, huh? That's not what it's supposed to be about. We all know that. And yet, every year we seem to get caught up in it. I'm praying that the Lord will use this year and our situation to teach me SIMPLICITY. To not worry about all the other and just focus on Him....the abundant blessings He has given our family this year, and simply rest in a family reunited. I want to just soak it all in. Like I said before, this sounds so simple, but it really will be a struggle for me to not get overwhelmed. I guess that's why I'm trying to prepare my heart and mind NOW.

We had another tough morning again today. Caed woke up crying that his tummy was hurting. After about 45 minutes, I decided to unhook him from his feedings and also skip the Imodium dose. I could tell he was having pain spasms. He would be ok one minute and then crying the next. Finally, around 2:00, he went to the restroom. Without going into a lot of detail, let's just say he was better after that. Todd and I are wondering if his intestines will possibly hurt the thicker (and more normal) his stools get. ???? He only had 3 stools all day, however he ate very little.

I got a message from one of the IRP nurses saying one part of his stool sample came back positive. I guess I will find out Mon. what it is and what they want to do. Not sure if it's just the c-diff again or something different.

This was supposed to be a big week for Caed (being totally off the IV fluids), and yet the last 2 days have not gone very well. I don't think it has anything to do with the fluids, but just not sure what's going on, and why he has started hurting again after all these months.

Still no snow here, but the forecasters are saying there is another possibility Mon. and Tues. The kids are praying. Caed wore his "snow boots" all afternoon! ha!

WAY TO GO TECH!!!!!

Friday, November 7, 2008

Fri. 11/7 - update




This was where the kids sat the entire day! Just waiting for the snow....................... Reagan even posted signs up on the window calling for SNOW!!! ha! They were so excited last night as they went to bed thinking they would wake up to a "winter wonderland." They have been so sad today, and almost upset with ME (thinking I have had something to do with it). ha!

This morning Caed woke up with a pretty bad headache. He sniffed and snorted all night, so I just assumed he was getting the sinus junk Todd had last weekend. He cried a lot in pain, and our days of me rubbing a cool cloth on his forehead resurfaced again. It was hard to relive, but I was trying to stay positive and be thankful that it was only a headache. I gave him some Tylenol and he finally fell back off to sleep. He slept til noon, and has been fine (normal) ever since. I don't think it had anything to do with CO2 level or anything, but your mind sure goes to all that! I guess only time will tell. Please pray it was nothing. My throat has been hurting today some which is always an indication of a cold coming on, so again......we'll see.

Tomorrow we plan on just hanging out here again. It was a nice day today for me. We had school in our pajamas, and I finally got dressed around 4:30!!! Hopefully we can just have another relaxing day (waiting and praying for that snow.....I'm sure) We will also be cheering on our Red Raiders!!!!!! GO TECH!!!!

Praise - Caed had only 4 total stools yesterday. Haven't seen that number since........????? Also, he slept ALL night last night!! Again, he hasn't done that in a very long time. Today he has had only 5 stools. He IS improving!!!!!! Thank you God!

Thursday, November 6, 2008

I WILL rejoice!

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything; by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4: 4-7)





Will there always be fear? Will I ever get to the point that I don't worry when Caed has a tummy ache, a fever, seems overly tired, etc... I'm not sure. When you go through a great trauma, I think it always follows you (somehow). Today was a big day for us...Caed's first lab draw since being off the IV fluids, and also quite possibly his LAST dressing change! I've had feelings that I don't think I can explain, nor which most would even understand. These are things we have been doing EVERY week for the last 8+ months, as awful as they are, as traumatic as the dressing changes have been for him, it's a strange feeling thinking these aspects of Caed's illness are over. Please hear me.....I'm not saying I don't want them to end. YES! Of course I do. But, again, it's something that I cannot explain. It's moving into a new phase....uncharted waters. Much quieter waters, but nevertheless unknown. As much as I want that central line OUT, it also has provided great security for us. It helps drawing blood every week to be a painless experience. Something quite honestly I am dreading SO MUCH!! Today was supposed to be a day of great rejoicing. Prayers have been answered! And yet, time and again, I felt satan creeping in trying to steal my joy and consume my heart with fear. What if his labs come back abnormal? What if we take out the line too soon? What if we're getting our hopes up for a recovery that may not happen? Will there ever be a time I don't worry?



The thief comes only to steal, kill, and destroy.............. (John 10:10)



The Lord has reminded me of this truth many times today. It is a choice I have to make. I fully recognized satan's attack against me today, so now I need to choose JOY!!! Isn't that just like 'the deceiver'? Days that should be filled with rejoicing and praise, he sneaks in and plants seeds of fear and doubt. God has answered so many prayers for Caed and this week we are seeing them play out. Our nurse called this afternoon and said HIS LABS LOOKED PERFECT! He has only had 3 stools so far today!!!! He possibly had his LAST dressing change EVER!! We will be heading HOME (and our family be reunited) very soon!!

PRAISE GOD!!! YOU HAVE BEEN SO FAITHFUL TO US! YOU HAVE BESTOWED TREMENDOUS GRACE AND MERCY ON OUR FAMILY! YOU, AND YOU ALONE ARE WORTHY! YOU ARE JEHOVAH-RAFAH.....THE GREAT HEALER! YOU CONTINUE TO CARRY US THROUGH THIS TERRIBLE STORM! THROUGH YOU.....WE WILL OVERCOME!


I will choose to REJOICE!!!!!!!!!!




Last pain-free blood draw????????




LAST dressing change?????????

Thurs. 11/6 - update




Winter has arrived here in Nebraska! It's cold..........supposed to get a little bit of snow tonight and tomorrow. Not sure if it's enough to stick or whether it'll just be flurries. This will be our first experience with snow here in the Midwest. The high is only supposed to get up to 35 tomorrow. I'm sure we'll just stay put (and warm) here at the hospital.




Reagan has been busy filling our walls/doors with artwork.



**Congrats Miss Bridgette!!! We love you so much!