Friday, June 02, 2006

Drum roll please......

My goodness how the time flies around here!!! I’m sorry I didn’t get to the computer to do an update yesterday after the swallow study. Drum roll please…………..Little Bug passed the swallow study with flying colors!!!!! I was so proud of him, I actually cried!!! I know, most of you are saying, “Big surprise!” that I shed a few tears, but I did!!! When we left our room yesterday afternoon and walked the long hallways to the fluoroscopy study rooms, I had the biggest knot in my stomach. I had been priming Connor all morning with prayers for his swallow strength, and whispering in his ears how he needed to show all these docs that he hadn’t forgotten how to swallow. Well, he must have listened, because he did very well. When we walked in the study room I had the same feeling that I had when I was 18 and I walked in the auditorium to take my SAT’s!!!! C’mon, you remember that sinking feeling don’t you? You know the sensation in your heart that tells you if you don’t do well on this test you’re not going to have all the opportunities you want in life. Well, this swallow study carried the same sort of significance for Connor. Now that he has passed the test, the docs have ok’d him to take 5 cc’s (about 1 teaspoon) of mama’s milk by mouth each day. I know it doesn’t seem like a lot, but for Little Bug, this is HUGE!!! As long as he keeps tolerating the sucking swallowing combination, he will be able to SLOWLY go up in volume. The occupational therapist, Gayle (whom we love with all our hearts) made Connor a binki trainer. Basically, it is a binki with a very small tube inserted into the end of the nipple and the other end is connected to a syringe. While he is sucking on the binki, we give pressure to the syringe and he receives a little bit of milk. He fights it a little bit at first, but then he gets into it after a minute or so. We hope that he will keep tolerating both volume and taste in his mouth because we were starting to get worried that he might be developing what they call oral aversion. The biggest thing in our corner is that Little Bug is totally attached to his binki. The OT/PT has told us that that was very good and vigilant on our parts to keep him interested in sucking. We consider this to be a very big victory for Connor. As with everything around here, it is going to be a slow road, but at least we are on the road. Our prayer will be that the reflux doesn’t get worse and that he can swallow without gagging and throwing up.

Yesterday Connor also got caught up on his immunizations that he has been missing since we’ve been at the hospital so long. Over two days, he received five immunization shots. Poor little guy was kind of fussy, but he’s doing just fine now. On Thursday they decided to pull his central IV line out as well. Now he only has his GJ Tube and the EKG leads and oxygen probe that hook him up to the monitor. We’re loosing more and more each day, and it’s starting to feel more normal, well as normal as normal can be in a hospital.

We continue to await word on what the plan is for surgery and going home. There seems to be a split camp about the surgery. The pulmonologist seems to think that since his lungs are starting to heal that we should reevaluate him in September, before cold & flu & RSV season start. He believes that if he’s doing better then, that we should lay low during the winter months next year and do his heart repair next summer. Uuuuggghhhh!! You can imagine my horror when I heard that. I had Randy speak with our cardiologist in Tacoma and he seems to agree with our line of thinking that Connor won’t truly heal until he has his heart repaired. He’d like us to push for heart repair before the end of summer so that he can go into the winter months strong and healed and growing. This is what Randy & I believe we should be shooting for. Please pray that our request will be honored and that Connor can have his heart surgery sooner rather than later.

We have been doing fairly well here on the surgical floor. It’s always a bit different because the total responsibility of care is on us, so getting out for a bit is extremely difficult. Randy stayed the first two nights here in his room while I slept out in the trailer to get some extra sleep, and now I am here with Connor 24/7. Randy had to go home and go the base for his responsibilities there and he will be spending the weekend up in Ferndale to attend a special family friend’s funeral service. We always miss daddy when he’s not with us. My mom came yesterday for a couple of hours as a surprise and she got to see the swallow study. She also came today for the afternoon. I so appreciated today’s visit as I was soooo tired. Last night the nurse came in at 3:30 am and told me that they were moving us out of our room. I will be honest, I about lost it!! I put my foot down and said I wasn’t moving unless they filled out our discharge papers and we were going home. Apparently, the nurses on this floor didn’t know how many times we had been moved and so they did decide to move someone else instead. I was pleased, but that decision took awhile and I didn’t get back to bed until after 5:00am and then Connor woke up for the day at 5:45am. Oh the life of motherhood. Anyway, while mom was here today, I got an hour and a half nap and it was very invigorating. Thanks mom, for giving me a short break and for bringing clean laundry!!! Oh yeah, and Connor loves his new little Hermie & Wormie friends!!!!

I just realized I’ve gotten quite long winded, so I will close. I know that it is good for all of you to get caught up with our progress and more than anything it’s good for me to write. I’m sitting here in Little Bug’s room and we just finished bath time and snuggle time before I began writing. He has been sleeping as snug as a little bug can be the whole time. Every now and then I hear a little sucking sound when he smacks his binki, or a sneeze or a coo. Oh how precious are the sounds of an infant. Man, I love this Bug!!!!

Lovebug Hugs,

PS ~ Enjoy the pics below. I haven’t posted pics in a while, so I’m playing catch up over the past week or so!!!


Anonymous said...

Praise the Lord!!! What great news Lori. We knew Connor could do it. We will pray for more victories to come and that your requests regarding Connor's heart surgery will be heard and considered. We love the pictures they are soooo cute. I think my favorite is the one with Randy doing exercises with sleeping Connor:). Connor does have the best parents any little guy could ever have. You truly are amazing parents and are such Godly examples to those around you! We love you!
Sue & family

Michelle said...

Great news about the swallow study! What a relief that is done and over with AND that he passed with flying colors! WTG Connor! Sounds like things are really looking up. Enjoyed looking through all the latest pictures too. He's adorable!

Heather Bennett said...

Praise the Lord! What blessings we see every day! I am so glad that Connor is getting better and better each day. However, I was afraid that a regular room would mean a tired mama. It is true, that is the life of a mother. Very little sleep at times. Even though Brennan is 4 now, the other night he wasn't feeling well and had me up all night long. Hang in there. More hours of sleep are coming.
I also want to say "Great Job Mom!" on getting that poopy samply. :) Throughout my few years as a mother, there are certain things that just make me say, "You know you're a mommy when..." Some of the fun things to fill in have been, when you find an extra pair of training underwear in your purse, when you wipe a runny nose with your own shirt, etc. You get the picture. Well I also have to say "You know you're a mommy when you're not afraid to dig through the poopy for a sample." I know... been there done that! It's the joys of motherhood.

I love you my friend and am glad you are finding so many joys in motherhood yourself. It's the hardest but BEST job we could ever be blessed with.

GOOD JOB CONNOR!!!! I am so proud of you. You just keep wowing those doctors with your strength. You know it's a special strength! It comes from God Almighty! I love you little bug!
Love, Auntie Heather #2

the haners said...

Rejoicing with you on the great news regarding the swallowing results and are continuing to pray that Little Bug will continue progressing. We also pray for direction and wisdom in the heart surgery, so he can get well and go home!!

Blessings in you all,

Anonymous said...

Soooooooooooo glad to hear how well Connor did. Praise God. I have been checking your blog for updates. It is amazing that we can be in the same hospital and never see each other anymore.
Keeping you in our prayers,
Corey, Shawna, Rosalie, Kaylin, and Alanah
PS We have nurse Amy today and she is graduating us to a crib!!!!

Anonymous said...

Just received the neat surprise in the mail today! You are so special for finding time to do that with all that you have going on. It's awesome to see Conner taking these small steps towards better health. Go, Connor, GO!
Love you, Lori.
Owe you a Coke,

Gary, Lynette, Zachary, Lucas and Savannah said...

We are all so happy for the great news. Thanks for posting all the pictures. Connor sure is filling out and his cheeks are getting so round. We will visit soon!

savannah maulin said...

i am very very glad connors doing good. i will come and see him soon!

Auntie Heather Milliren said...

Way to go Connor! Keep on sucking down the good stuff so that you can grow to be the big, strong man of God you are meant to be. I am rejoicing with you as you learn how to "drink" the good stuff.

I love you!

Auntie Heather

P.S. Okay, now that you are doing better you need to help Mommy and Daddy get back home. So, keep up the good work. I want you to have your heart surgery sooner than later.

And, don't forget our special song. . . "I'm picking up my baby bumblebee. Won't my mommy be so proud of me? I'm picking up my baby bumblebee. Ouch! It stung me. . ."

Goodnight Little Bug! Kisses to your Mommy and Daddy, too.

Anonymous said...

I am sooo pleased to hear that little Connor is making some progress of healing. I know that there is still a lot of healing that needs to take place and a lot of it is waiting on the heart surgery, (which we will be praying that he can have this soon) but let's not forget that God can blow us all away with "His" healing and "His" timing and in "His" steps. He has before and still can blow the socks off of all of us, as to how soon Connor can be healed. I know you must get soooo wearry of hearring some of these words and it is stuff you already know but I just wanted to encourage you once again and remind you that when you are weary and feeling impatient (which you have every right to feel) know that we "the army" are ALL around you guys holding your arms and hearts up in prayer! You 2 or actually you 3 are all doing such an awesome job of showing what a christian family and marriage is all about.
Love and prayers

Anonymous said...

Congrats to Connor. He Graduated to a new level. We are very proud of the strength you are gaining little one. I know Mom and Dad are tickled pink to think they are one smidge closer to bringing you home to your one little room.

Sorry I haven't been e-mailing much. I just finished doing the flowers for a wedding and now I began the flowers for Staci's wedding tonight. But you are all still in my prayers.

The pictures are beautiful. What a gorgeous boy you are Connor.

I know you're already sleeping. So wake rested and have a glorious Sunday.


Brenda said...

Yeah Little Bug! We're so proud of you - showing the hospital staff what you're made of! :-)

Auntie & Sister Teresa said...

We are so happy that Connor is doing so well. What a wonderful thing to come home from being away for 5 day's & see the adorable pictures you posted. He is getting so big! I need to come down soon so I can hold little bugaboo! He is too cute (nevermind that I'm a little biased because I'm his auntie!)

Hope you are taking good care of yourself too Lori. Take advantage of any opportunity to refuel (sleep! whenever Daddy is around (even though we think we can do it better...SHHHH oops I let the cat out of the bag. They really are very capable!) Hey brother you really make me proud at how well you've adjusted to being a daddy. We love you all & hope, wish & pray for many more brighter & better day's ahead for your beautiful little family. God bless you all.

Lovebug hugs to all three, Teresa & family.

the kid's want me to say "Hi" to you.