Pictures from Aunt Kim

Aunt Kim is posting some images from our recent trip to Colorado. Jesse is so darling! He is just a happy, full of life baby. He smiles easily and his face just lights up ... as you can see! Aunt Kim's son, Daniel, is 3 weeks older than Jesse. They had fun playing together.

May 22nd Update

Thursday Jesse went in for a cardiology check-up with Dr. Villavicencio at Children’s Hospital. It had been 2 months since his last appointment so we were hoping to see improvement in his pulmonary hypertension, but the echo actually showed it had gotten worse. The first step is to increase his medication (Sildenafil) because he was still getting the dose for being 12 pounds. (He is now 16 pounds 3 ounces and 27 ¼ inches long!!!). Then we will go through a lot of other doctor visits and tests to try to determine what is causing the pulmonary hypertension. A primary cause was the heart defect, but since that has been repaired it should be getting better. So now they will try to determine if there are other causes (such as apnea, large tonsils, obstructed airway, lung disease…) Jesse is scheduled to see a pediatric ENT (Ear, Nose, Throat) doctor on June 11th. He will have an overnight sleep study, but they are booked until August. They would also like a swallow study, upper GI, chest CT scan, and cardiac catheterization. The cardiac catheterization and CT scan require a general anesthesia so we will try to schedule those together. Sometime Jesse will be seeing Dr. Ivy, the pulmonary hypertension specialist, and maybe a pulmonologist (lung specialist.) All of these are not definite at this point. We are increasing his medication and will probably redo the echo the week of June 10th when we are in Denver. It is possible that this is a false alarm, and all due to a cold he has had, so maybe all will be better then. But Dr. Villavicencio really felt that this far out from surgery we should have been seeing improvement.

Jesse appears to be doing great, gaining weight well, and also gaining strength. He has more head control and raises his head better when on his stomach. He is almost always very happy and content. On the outside he appears so healthy, it is hard to believe something so serious can be going on inside his body. Please pray for wisdom for the doctors and for us in making decisions about his care.

Love,
Kristan


The LORD is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. (Psalm 28:7)

A Couple Pictures of Jesse

Jesse is continuing to grow well and is over 15 pounds now. He has been somewhat sick for about a week now - vomiting ocassionally, runny nose and coughing (usually when eating, or when he wakes up.) But he has not had any fever. He seemed to be a little better today, but I guess if he is still coughing on Monday I will take him into the doctor. The rest of us have all gone through various symptoms. Sam has had it the longest, and it looks like Chad just started today with an upset stomach, chills and headache. Please pray that we can all get over these colds.

Love,

Kristan

Jesse and Penny

Here are a couple pictures of Jesse with Grandma & Grandpa's new dog Penny. They seem to really like each other!

Gaining Weight

As of Thursday, April 17th Jesse is officially 14 pounds 8 ounces - so he is back to gaining weight. That is great news and he is even starting to outgrow some 3-6 month clothes. He has tried quite a few foods now: rice cereal, oatmeal, carrots, grean beans (which he threw up), potatoes, yogurt and bananas. And I am adding a new one every few days. I will be out of breast milk by tomorrow, so he is on the 22/calorie formula.

His new "trick" is playing with his feet. After a little encouragement with foot rattles, he has figured out how to grab his feet and now does it without the foot rattles. He rolls around a lot and is getting stronger in his upper body. He sits up pretty well in my lap, but has quite a way to go before he will be able to sit up on his own. He holds his head pretty well when on his stomach, but doesn't push up on this arms yet.

His oxygen level may be improving, slowly. It seems to go down to around 82-85 at night, but sometimes stays above 86 (that is where the alarm is triggered).

He continues to be a very happy, content baby with the cutest smile.

Love,
Kristan

God's Continued Provision

We continue to be encouraged and amazed by God's provision for Jesse's needs. We had a significant bill from Jesse's Flight for Life to Children's Hospital when he was born, because our insurance only paid a portion of it. We had applied for an assistance program through the Flight for Life's "charity department." Yesterday morning Chad had asked me if we had heard anything about that bill and I said "no." Then Collin came in with the mail. I saw the bill, and thought it was probably just the monthly bill, but when I opened it, it showed a $7,533.10 "adjustment". Chad called to confirm that this was what the charity deparment had credited to our account! Today I was able to write out a check for our co-pay on the Flight for Life so that it is now paid off. We are so thankful for the many ways God has worked to help with the Jesse's financial needs!

Love,
Kristan

Beans

Last night Jesse had his 2nd vegetable - green beans. He actually seemed to like them. But a couple hours later he seemed a little unhappy and then threw up - a total of 5 times. I don't know if it was due to the beans, or if he had some type of stomach virus. He seems fine today. I guess I won't feed beans again for a while. Otherwise he seems to be doing quite well. I'll try to remember to weigh him again soon and see if he has gained any weight.

Love,
Kristan