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,
Lori

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!!!

WOW!!!! More Pics....

Little Bug right after bath time tonight. He was so warm and snuggly. I think I buried my nose in his neck for about 5 minutes and just took in his wonderful baby smell!!!



I think the Lord had this room hand picked for us....there is a dragonfly bug right in the middle of the floor. Isn't that great!!!


Mama and Occupational Therapist, Gayle after the swallow study!!


Grandma and Little Bug snuggling just before getting his immunizations on Thursday!!


Mama and ICU Nurse Amy having a good victory cry after Little Bug passed his swallow study!! Way to go Connor....


Connor looking at mama in wonder.....or is he looking at his bug balloons????? One can never tell what captivates this child...One thing I know for sure is that he has captivated me!! I love you Little Bug!!


Lori and Julie (from the swallowing study department) and Connor (who isn't very happy at the moment).


Lori, Gayle and Connor right before the big swallowing test....C'mon Little Bug, let's show them what you're made of!!!!


Little Bug napping with his Blue Huggie Bear!!!!


Little Bug all dressed up for his big test. He even wore a Winnie the Pooh hat....We needed a big fat honey bear to be our inspiration for the swallow study.


Little Bug's all strapped in and ready to swallow!!


Cousin Derek and Little Bug....Thanks for always wanting to come and visit me Derek. I love it when you come and hold me. By the way, thanks for that cool little tiny bear, sometimes I use it to help me keep my binki in place....It comes in really handy!!!

Pics, Pics and more Pics

Can you tell that Little Bug is enjoying his exercise time with daddy??? I don't know, I think daddy might be a little easy on him, he slept right through it!!!


Thanks for the visit Norris and Phyllis. The lunch was yummy!!!


Little Bug getting snuggled close to daddy's heart and mama just can't keep her hands off that irresistible little face....Uuummmm...I could just eat him up!!!


Ok, I know this is gross, but what a mother won't do....Yes, you guessed it, I'm taking a poop sample to send off to the lab.....Yucky!!!


Moving day with another one of our very favorite nurses, Melanie!!! We graduated from the ICU a second time and this time we plan on staying out of there until heart surgery time. Connor was a bit sleepy from the move and not in the mood for pics, but we took them anyway!


This is the Stars group from Westgate Chaple when they brought their wonderful blessing basket to me. Aren't they cute???


Connor cute as a bug and snug as a bug with his new "Knee High to a Grasshopper" blanket from John, Susan and Baby Brent. Thanks guys, Connor loves the soft and silkie blankie!!


Last weeks visit with Pastor and Mrs. Bruener!!! Oh what a blessing the two of you are. Thanks for being an encourgament to us!!


Group photo with the Stars Group. Look at that basket....Filled to the brim with goodies!! Thanks girls!!


Connor holding on tightly to Daddy's finger. Don't you just love photo's like this!!!!

Excited and worried....please pray!!!

Hello all you bloggers and prayer warriors.....we are excited and a little worried or should I say "anxious"..... Connor goes in for his swallow study at noon today...so please pray that he will remember how to swallow. I know it sounds crazy but he's been feeding by the NG...NJ...tubes for so long, we are worried that he may not remember how to feed by mouth...so please pray!!!!!

Oh..... and Mommy wants me to let you all know that she is worried that her milk supply may be starting to decrease...AUGH...just about the time Connor may get back to normal feeding!!!! So more prays for lots of vitamin D fortified whole fresh "mommy milk" ......yes last time I checked God has a pretty good sense of humor!!!!! If I could be a bug on the wall to hear those prayers?! :-) Ha

Lovebug hugs.....Dad, Mom and Littlebug

Very special prayer need.....

Would you take a moment out of your day to bring a very special prayer need before the Lord? One of the pastors that married Randy and I, Pastor Doug Trentham is in the ICU in Tacoma with a very serious case of Menengitis. He needs a dramatic touch of healing in his body and we as the body of Christ need to uphold him in his time of need. He is extremely special to us as he and his family have been in Lori's life since she was 7 years old.

Lord we lift Pastor Doug to you right now. We ask you for a divine intervention in this situation and a peaceful touch from you. We never understand how sickness and disease can so quickly come in and disrupt and rearrange our lives, but you, Oh Lord, are the great physician. Please do a work in Pastor Doug's body. He needs a miracle from you and we trust you in this time for him and his family. We ask you to move quickly on his behalf!!! Amen.

Thanks for your continued prayers!!!
Lovebug Hugs,
Lori

Finally, Back Online.....

Sorry for the many days of not posting. The hopital computer system has been down since last Friday and we were not able to connect to the internet. We are back online now and we have much to report. I will actually take more time to do a more detailed blog later this evening, but for now, just the facts.

Little Bug had a great weekend, so great that he bought himself a ticket right out of the ICU on Memorial Day. We were moved to the floor and so now we have a private room on the 4th floor surgical unit and we are enjoying some quiet time as a family. We are still awaiting the plan as far as duration here in the hospital and what is next for Connor. Another piece of big news is that Little Bug made it to 9lbs 11.1 ounces!!!!!! YIPPEE, he's finally growing and back on fortified breast milk for the time being.

Connor's had more visitors over the long weekend as well. Cousin Derek stopped by with his mom, Auntie Maureen before they left for their annual Lake Parrygian camping trip. Thanks for the bear Derek and the Mariner's socks were great.....Connor can't wait to grow into them. Uncle Bryan, Auntie Heather and cousins, Olivia, Brayden and Bergen stopped by on Saturday and we had a lot of fun eating pizza and brownies...Thanks guys the visit was great!! On Sunday Grandpa and Grandma M. stopped in and brought homemade Rhubarb Rumble ( a Milliren Memorial Day Treat...Yummy!!! Thanks Mom!!) and when they saw Connor they could tell that he was getting bigger. Mom said, "Wow, look at his hands, they've doubled in size!!" I think that's a bit extreme, but who knows, maybe they have???? Yesterday we enjoyed a surprise visit from family friends Norris and Phyllis Norwood. They got to hold Little Bug and experience him on a very good day.....actually it was moving day for us so it was a great day!!! Thanks for the great lunch away from the hospital, we appreciate you Norris and Phyllis.

Please pray for Dad R. he went to the ER in Bellingham on Sunday evening as he wasn't feeling well. He will be released today (Tuesday) and we understand he is doing much better. I will write more later on, but I had to get to the computer and give all our wonderful and faithful bloggers an update!!!!

All our lovebug hugs,
Randy, Lori and Little Bug