Tuesday, July 31

More Montana pictures

Liam enjoys a late afternoon by the Lake with Uncle Marty.

Brothers Nate and Tommy enjoy some time together

Tommy and Liam enjoy being rocked to sleep by uncles Bruce and Marty

Colins cousins did an incredible job of genealogy research!


We have spent the last four days in Montana! Daddy's cousins organized a family reunion and we really wanted to attend...so... off we went! Michael and Robert lent us their motorhome and waverunner (lot's of fun). We travelled many (many) hours to Lake Bitterroot (near Kalispel MT).
Tommy and Liam travelled really well. We took lots of breaks to get babies out and walk around. Hannah, Nate and Daddy enjoyed lots of leg stretches too!
Daddy enjoys a fast toy on Lake Bitterroot.

Hannah and her friend came along too!

Sunday, July 22

Potluck with super sitters

Tommy and Liam enjoyed going to the ARC potluck and meeting the super sitters.... including Hannah and Nate! Even our friend Mighty Max was there (looking sooo cute). Hannah and Nate learned lots from the babysitters training, maybe they can even teach mommy/daddy a new idea.

Friday, July 20

More please!

We are trying a few pureed foods. It might look like I have more on my bib that I ate, but mommy would like to mention I swallowed four times :) Yippee!

Getting ready for the fair

Hannah and Nate worked with their goats thru an obstacle course in our backyard of tires, swimming pool and other things.
Hannah and Nate enjoyed getting their show animals ready for the Lynden fair. Look them up when you get there! Their 4H club is Pygmy Paradise (really fun club if you wanna join).

Nate has the opportunity to show an Alpaca this year. Thanks to our wonderful neighbors!

Tuesday, July 17

Swallow study

Tommy had his 'swallow study' at Children's Hosp today. He successfully can drink from a bottle called a Pidgeon, eat pureed foods and rice cereal! Yippee! He unfortunately aspirated on the Haberman bottle during the study (the same bottle he aspirated at home during a feeding therapy session). At least we know that the Haberman is out and the Pidgeon is in! Mommy can breathe a big sigh of relief knowing Tommy can safely swallow. We are looking into the G tube now as the feeding specialist at Children's feels that Tommy's anatomy will benefit more from the NG tube coming out so he can make a better transition to the bottle.

Our day at Children's was suppose to be a 9am swallow study, 11am echocardiogram and a 1pm cariology follow up. So Mom and Tommy left bellingham at 6am for the first appt (Daddy stayed behind with Liam,Hannah, Nate for a 4H function). Only to find that the appts were all askew and we waited until 11:30 for the echo only to find that they decided at the last minute (while we were waiting in the echo room) that they probably really didn't need to do one. Then the swallow study was snuck in around noon (three hours later than scheduled). And the cardiology appt finally happened at 2pm. Good thing Mommy and Tommy LOVE to spend time together. We had tickle fests! And we found the child's life helpers with the "bazzilion bubble maker".... there were hundreds of bubbles floating thru the air for Tommy to try to catch.

On the way back to Bellingham, Mommy decided to follow up with an insurance appeal because she was baffled by news from the outpatient pharmacy. Basically, Tommy has wicked reflux an receives Prevacid compounded to put in his NG tube. United Healthcare has denied 28 weeks of prevacid (at $39.98/week). We filed an appeal and after weeks of haggling back and forth it has been approved. Only to discover the insurance company has placed it at a level 3 pharmacy charge which means a $40 copay. Do the math and we didn't receive a benefit on an appeal we won. Baffiling. Frustrating.

Saturday, July 14

Out for a walk

Tommy and Liam really enjoyed a walk after dinner (and so did mommy & daddy).

Wednesday, July 11


Tommy has been trying really hard to take 1/2 ounce of formula by mouth. Today we had an appt at Connections and then one at home with WCEL around feeding issues and our transition from the NG tube to bottles. The appt at Connections went really well and Tommy as usual took a few sips off the bottle. The appt at home with the therapist went well, lots of helpful hints and Tommy finished the remainder of what he didn't eat by mouth thru the NG tube. The therapist and mommy were talking while Tommy laid on the floor to play when he turned beet colored red. And wasn't breathing.

Mommy picked Tommy up and patted his back until he projectile vomitted the feed back up. Painted the wall, painted mommy and a nearby Liam with milk. Most importantly he was crying which meant he was breathing. Whew!

Apparently, he aspirated the bottle fed portion of his feeding. His body could clear his airway by holding his breath and then vomitting. We saw an after hours pediatrician last night and talked to Children's Hosp (just to rule out post op issues) and along with the therapist, all agreed a Swallow Test is in order. So we have an appt at Children's to evaluate his ability to swallow. Until then, we are sticking to NG feeds. We are thankful he aspirated while all of us were present.... and thankful that we have an NG to be able to feed Tommy. We will continue with 'dry' oral explorations and hard munchables. Tommy has big smiles tonight and is glad we finally figured out he is having issues with the transition to bottles.

Friday, July 6


Hello everyone! Mommy and daddy wanted to finish some projects around the house. So brother Liam and I played with our new blocks.
Did I mention that I rolled over from my back to my stomach by myself?
If only brother Liam could show me how to roll from my stomach to my back. Mom... you are suppose to be helping daddy with projects!

Thursday, July 5

A rambling catching up...

What a busy week! I'll catch you up on our week. Last weekend, big kids (Hannah and Nate) left for vacation in Conconully for the week. First day they were having fun in the sun there, Nate called to say he slipped while biking and got seven stiches (Dad stiched his knee back together on the campground picnic table!). Nate sounded in good spirits, so this momma wasn't overly worried. Monday, Tommy had caught our family cold and just wasn't seeming like himself. So momma and Tommy went to the ER Monday night around 10pm. We called ahead to the ER to explain we were post open heart surgery (St Joe's accomodated us very well). On the way to the hospital, a deer hit our van. Mommy doesn't like driving at night, and we live across from a wildlife preserve which doesn't help her night driving fears (I really don't like animals springing out from the ditches in the dark). Apparently the deer ran off and mommy continued to the hospital (daddy stayed home with Liam). Tommy had a chest xray and a breathing treatment and felt better so we left the hospital around 1am Tuesday morning. We got up at 6am to leave for an already scheduled appt at Children's for post open heart surgery followup. I have now determined that my body and my brain need greater than four hours of sleep. Tuesday at Children's was an event. Tommy still wasn't up to his usual self so the dr drew blood (which takes a good hour and in this case three pokes). We waited until 4:30 (our appt started at 10am to hear that Tommy probably had a common cold). By this time, mommy and daddy are tired and dragging around the hospital. A huge highlight was being able to meet up with the Ebert family (geez, we love them). Wednesday the Fourth saw daddy grillin up some steaks and momma sleeping in a tad. Today is Thursday. What a week! We continue to feed Tommy a bottle every three hours and finish off the unfed milk thru his pump. Today he ate a little bite of pureed apple/blueberry. Next week we meet with two different feeding specialists so that might be helpful. I'll post pictures soon!

Tommy Adventures