Saturday, July 22, 2006

3 days of struggles & we're back in the ICU

I actually can't believe it, but I'm writting this post from the family room at Children's Hospital. You know what that means, right? Yes, you guessed it, we're back in the ICU. Little Bug has been in significant distress since the wee hours of the morning on Thursday. He had gotten his shots on Wednesday and so we thought that the fever and fussiness were related to that. When he continued to scream and cry and his fever continued to rise, I took him back to the doctor. Of course for the hour we were in the docs office, Connor was sheer perfection, not a peep to mention. Then we went home on Friday morning and he continued to escalate with distress. I kept trying not to overeact and bring him straight to the hospital, but my gutt feeling was that something was really wrong. Sure enough this morning I watched his distress turn into panic and he started experiencing some of the same things he would do months ago when everyone at the hospital labled it "episodes". So, back to Children's we came. First to the ER where they expidited us right through and then an admission to the ICU. He is stuggling terribly and I am worried. Daddy is gone overseas, as of yesterday and I am really feeling his absence. My mom stayed the night with me at our house last night and came to the ER with me today. She just left for home this evening and Little Bug and I are in for another night back in the ICU. I'm sure there will be lots of tests to do, but for the moment, they are still just trying to quiet him down so he will sleep. He has gone almost 3 days without sleeping, except for 10-15 minute catnaps.

Please pray for Connor. Please pray, like never before, for these docs that they would have wisdom to pinpoint the problem. I will stay updated as best I can, but for now...PRAY PRAY PRAY!!!!!!

Lovebug Hugs,

Wednesday, July 19, 2006

Little Bug Finally Caught On Camera Smiling...

I finally caught a smile on camera. Little Bug just lights up the room when he flashes his grin. He doesn't do it often enough though. We are getting many more out of him than before, but we can't wait for giggles and belly laughs!!! For right now though, this is the greatest thing on earth to show off his grin to the world!!!! Oh how he melts our hearts. I feel all squishing inside just looking at this picture. And if you get the urge to kiss your computer screen go ahead, just remember to take your lipstick off our your husband will get cranky because he has to clean the screen.......Ok, that's one from personal experience!!! Hee Hee

It’s been far too long since I sat down and put my fingers to the keyboard to do an update on life at home with Little Bug. Today I seem especially reminiscent because it was a month ago today that we got our official walking orders from Children’s Hospital after our 111 day stay. In just one short month we have had many “firsts”. We went on our 1st official stroller ride the very same day we came home from the hospital. We strolled around our neighborhood and went to the park and I think both Randy and I were gleaming the whole way. We were as happy as we could be showing off our Little Bug around the neighborhood. I remember that night saying to Randy, “Honey, I think I’m as happy today as the day we became husband and wife!!” He definitely had to agree!!!! Connor has also taken his first trips to the grocery store and even Home Depot!!! We figure he better start getting used to Dad’s favorite store sooner or later!!

I have to tell you the funniest story. One day I had to go to the grocery store, and I was in the produce department and I heard a soft voice say, “Little Bug! Excuse me. Are you Little Bug’s mom?” I turned around in utter disbelief and I said, “Well, yes. Yes I am.” The woman proceeded to tell me that she had been following Connor’s blog for at least a couple of months and she recognized me from the pictures. She began to explain the line of people that she knew that also knew us, but that we didn’t know her personally. As we visited she shared how Connor’s story was inspiring her in her faith and her belief in God. After a hug in the produce isle I proceed to go home. As I drove away from Safeway that afternoon I had to say thank you Lord for Connor’s story touching the world. To have a complete stranger approach me in the produce isle of the grocery store was incredibly touching.

We have made many trips back to Children’s Hospital for appointments and ER visits. Last week when we went for our GI follow up appointment they decided that Connor needed a biopsy to check for milk protein allergies. We went back on Friday to have that done and when we approached the day surgery desk, Paula greeted us and said, “Well hello Little Bug.” I laughed and thought to myself, “Kid you’re getting famous!!” I inquired with Paula and asked how she knew we called Connor, Little Bug. Well, one of our favorite operating room nurses, Heidi, had seen Connor’s name on the docket for day surgery and told Paula all about him. They proceeded to pawn their way through a box of Beanie Babies that they give all the kids that come for day surgery. Heidi told Paula, “We just have to find “bugs” to give to Connor. Sure enough, after my visit with Paula she handed me a little ladybug and the cutest dragonfly. Way to go gals!!! Just the mention of Little Bug around that hospital and somebody remembers him and his story. Sure enough, Heidi was able to be the comforting hands that held Little Bug during his procedure. We got the results back today and sure enough, he has what they call “Allergic Proctitis and Allergic Colitis”. The recommendation is that Connor goes off mama’s milk for the time being and goes on a formula that is specific for this type of allergy. We can’t afford for him to continue with this blood in his stool problem because he could become iron deficient. The plan is to put him on formula up until surgery and then maybe we can try him back on mama’s milk toward the end of the year. It goes without saying that this has been very difficult for me to take, but the Lord has given me perfect peace about it after having many differing opinions get involved. I know that my pumping was not in vein and I am pleased with the amount of mama’s milk he has gotten to this point. Hopefully, he will get back to the mammoth supply stocked up in the freezer. Only time will tell.

Connor has been receiving physical and oral therapy here at home for the past 2 weeks. He is doing fairly well with his new exercises and we work hard with him to build his little muscles in his neck. We have a lot of catching up to do, but we are confident that Little Bug will rise to the challenge and get up to speed in no time. He is struggling a bit with his oral therapy and not liking his binki trainer much these days. He does however, like the fact that we have started giving him baby pears on the end of our finger a few times a day to get him engaged in new tastes. He seems to like this really well. We have been trying to spend as much time outside on the deck as we can. Little Bug loves the fresh air and it is so good for him to be outside to look at new things. He loves to look at trees. He sleeps great after a long evening walk as well!!! We meet regularly with our pediatrician and our cardiologist. They think he’s doing well with his weight gain, 11 pounds 10 ounces as of today. As Randy mentioned in his previous blog, the cardiologist is a bit concerned about Connor’s Pulmonary Hypertension and so he is starting him on new round of antibiotics until his surgery in September. Other than that, life is pretty normal for us at home. I am really enjoying being a housewife and mom. We are finally organized and we have our routine down pat!!! Thank the Lord for organizational bins and checklists!!!!! Anyone with a child with medical necessities will know what I mean!! Morning and evening meds go much easier with a set in stone routine!!! Boy was mom ever right when she said, “Children crave routines.” Connor certainly fits that bill. Even though he sleeps beautifully at night, he awakes in the morning by 6:30 cooing in his cradle. He’s back to sleep by 7:30 for a cat nap. Meds by 8:30 and another morning nap by 9:30-11:00. Then he catnaps throughout the day a little, has a really fussy time during dinner (of course) then meds at 8:30 again a small nap until 9:00pm. Up and alert and playing until 10:30, then out like a light for the rest of the night. He’s just like clockwork and we love him so much!!!! There you go, a day in the life of Little Bug!!!

We were sad to get word on Friday that our precious little baby Sarah, who was Connor’s roommate for some time at Children’s, passed away. She had a two and half month fight with a major heart defect and the Lord saw fit, once again, to call her home to heaven. How we don’t understand the ways of God. Our hearts go out to Adam and Jessica and Sarah’s grandma Carol. We love you baby Sarah. Now that you are in Heaven, please have Stone, Michael and Jonah watch over you on the playground near the Pearly Gates!! Rest in the arms of Jesus and be healed sweet little one!!!

For those of you that have followed the blog for sometime, you may remember seeing comments written from my dear friend Ruthie! Please say a prayer for her and her family as her Dad, Ed went to be with the Lord on Sunday. As his wife Nancy said, “He is finally healed and walking without his braces and crutches.” Our love and prayers go out to the Livingston’s in Wyoming!!

Randy and I were commenting just the other night that this year has brought with it many levels of grief for us. We have battled through disappointment, depression, unanswered prayers, death, severe illness and separation. What a trying 7 months it has been. We are realizing a whole new perspective on God’s Grace. We have yet to understand the why’s, but we are beginning to understand that what God wants from us is that our hearts and minds be totally surrendered to him and to his ways. “No ear has heard, No eye has seen what is in store for them that love God.” We don’t know why God has allowed our eyes to see such grief or why are hearts have cried for several days straight, but we do know that God is building us up to be more compassionate people. People more concerned with the hearts and souls of others rather than the tasks we get ourselves involved in. People who realize that loving without limits and loving in spite of a situation are more blessed than anyone else. People who are generous with kindness and who take great delight in the smile and the laughter of a child. We are becoming better people because of our son, Connor. Little Bug will one day here the story of his rough beginning to life. He will also here that his Daddy and Mama wouldn’t change a single day of the journey because it has made us who we are today…..People of destiny and people who are richer in faith from this very experience. Thank you Little Bug for this most gracious and important lesson in life.

Lovebug Hugs,

Funniest thing happened on the way to the ER on Saturday!!!

Most moms will read this blog with absolute hilarity and say, “Finally, someone else has walked in my shoes just once!” Well, pull out the Depends if you are bladder challenged in any way, because this one’s funny.

Saturday morning we woke up to bright blue sky here in Auburn and I said to myself, “It’s a great day to take Connor to the berry farm and pick out some berries and make our yearly supply of freezer jam.” So we got up and got ready for the day, ate breakfast with daddy and we were all about the business of making jam. I was checking my supply of sugar and containers and making my list of needs when I heard the ever dreadful “Beep Beep of Little Bug’s feeding pump. I just hate to hear those alarms because I am always wondering if this will be the alarm we can’t fix at home. Well, sure enough when I went over to read the machine it said, “No flow in.” So, I proceeded to try all of my “tricks” at unclogging the dreadful J-tube because I know if I can’t fix it, it means pack up and head to Children’s Hospital ER. For the next 2 hours Randy and I feverishly try to get that pesky tube unclogged. It’s as hard as a rock and we can’t get it to budge. So, with a grumpy attitude and a huff in my voice, I regretfully packed the diaper bag and secured Connor into his car seat and headed toward Children’s Hospital. Most of you that know me well, know that I can get pretty task oriented sometimes so once we were strapped into the car, I was thinking, “Get to the ER and get this day moving forward.” Little Bug decided not to be such a good car seat rider and he was screaming his lungs out. I thought his eyeballs were going to bulge right out of his face. And then I heard it…..It was an explosion of volcanic magnitude and then the crying ceased. Connor had pooped so bad I could already smell it up front. So, we weren’t more than a mile down the freeway and I stopped on the side of Hwy 167 to change the poopy!!! Not only had he pooped, he had totally wiped out the outfit he was in. Thank goodness I pack another outfit or we would have arrived at the ER only wearing a diaper. So after 10 minutes we were back on the road with the same task oriented thought, “Get to the ER and get this day moving forward.” After about 5 miles I looked on my dash to see a blinking red light that looked like Aladdin’s Lamp dripping oil. I thought to myself, this can’t be good. So I called Randy who happened to be on the base doing simulator training. He said, “Well Honey, you should check the manual and see how far you can travel and then you’ll have to stop and change the oil.” GREAT, I thought!!! So I pulled over on the side of the freeway again. As I am thumbing through the manual the car shakes every time a car zooms by at full speed and I’m just sure that this can’t be safe. Once I finally found the corresponding picture in the manual to what I was looking at on the dash, this is what I read, “If the oil light comes on and is flashing, pull over to the side of the road and turn off the vehicle immediately and seek emergency help.” GREAT, my emergency help is 40 miles away and unable to come rescue me. So, I did what any girl would do, drive to the nearest Wal*Mart. I bought oil and proceeded to the parking lot to change it. By the way, I’m sweating bullets because I was so hot. Ok, oil is changed and we are back on the road. Whew, what a fiasco. Connor and I were traveling at an inchworms speed because of something going on on I5 and I looked at the clock and it was time for a specific med that Connor needed, so just passed Boeing Field we found ourselves on the side of the freeway again giving meds to the tune of zooming cars and semi’s passing us by.

Once we arrived at Children’s Hospital everything was just fine and we were on our way once again. Then it was off to the berry fields. Oh yes, we did not thwart our plans. We were making jam one way or the other. Connor screamed the whole time we were in line to pay for our berries and then once we got in the car he seemed to get his personality back and he talked and cooed the whole way home.

We survived the day and the jam got finished, but boy did it come with a lot of drama. Hope that helped pick you up from whatever doldrums you’ve been in today. I’m so glad I can laugh at our hilarious escapades!!!

Lovebug Hugs,

Monday, July 17, 2006

Back at home and very slow to Blog!!!

Hello all you bloggers....Dad here..and yes we have definitly slowed down on the blogging as you can see! In the past Lori has done most of the posts but Mama's pretty busy this time of year...making 104 tubs of freezer jam...dinners...appointments....taking care of me and littlebug...and the list goes on...she's a busy lady.

So when I checked out the blog this morning and saw the last post on 6 Jul....I figured I better give a little update so here goes an update blog from good ole Pop (remember I'm not the writer in the family so bear with me OK).

Connor is doing quite well for where he's at in life...still needing his heart repaired but overall he is gaining weight and looking very good. He even has baby fat around his knees know...the kind you just have to squeeze and pinch...he actually loves it! Last check he was on his way to 12 lbs!!!!!!!!! And Lori and I can both tell he';s getting fatter because he's getting to be tough to cart around in his car seat..its heavy...but good for the bicep workout!

September is still looking good for the heart repair. Lori and I saw the doc the other day and he seems to be onboard with the first part of September....that's good news.

Connor's PA band is not working the best yet because he needs to grow in to it and doesn't appearing to be doing that fast enough. So Dr Steffinelli put him on another med to regulate the pressure in the lungs.

And one last thing is or should I say "end" thing is Littlebugs little "bum"......I know I know....who would have ever thought of it....Randy talking about my little babies butt.....but here goes....he's got a rash that has been pretty bad so we took him in and the doc's say he may have a "milk protein allergy"....the worse part is he may not able to use Mama's milk any more.......that has been especially difficult for Lori so if anything pray for Lori to be at peace with this new twist in Connor's life. Lori is a fantastic Mommy and only wants the best for her baby so she worked very hard to see that she pumped religiously eveyday to make sure Connor had plenty of breast milk.....and now this upset!!!!!!! Please pray that he doesn't have this allergy and can stay on the good stuff...Mommy's milk!!!!

I hope this little update helps. We'll try to be better, but we are also having fun with our littlebug at home too......walks and stroller rides and rocking on the back porch. As for me....Daddy...I can truely say its so nice to have my family home!

Love Randy, Lori and ....lovebug hugs from Littlebug!!!!!