Some Cute Pictures

I realized that I shouldn't use this blog just for medical updates since some of you reading don't get to see Jesse and see how much he is changing. He is starting to sit up on his own for a few seconds - enough for me to snap a picture before he falls over. He pushes up on his hands, and likes the position of the 3rd picture - I'm not sure what to call it - with his arms and legs up in the air. He rolls all over and "crawls" on his belly to get where he wants go. He has started using the high chair to eat in rather than the swing, and loves to eat. He eats little puff cereal and had some toddler cookies whiche he loved (he likes sweet things!!!)

Kristan

Sleep Study - Preliminary Results

I got a preliminary report from Jesse's cardiologist regarding the sleep study. It was abnormal and showed episodes of obstructive and central apnea. (In central apnea the brain's respiratory control centers are imbalanced during sleep.) We have an appointment on August 12th to go over the sleep study results with a doctor. Then Jesse with have the heart cath on the 13th, and a bronchoscopy to look at his airway. Please pray for those tests to go well.

Kristan

The "No" Sleep Study

Well, we are done with the sleep study. They should call it a "no" sleep study. Jesse actually did quite well, but kept grabbing at his face all night trying to take things off - mostly the nasal cannula. He also took 2 bottles during the night - he normally sleeps all night. Then at 6:00am the study was over and they wake us up. I think I managed to get a few hours of sleep. Jesse woke up with a smile on his face. He is such a happy baby. We will have to wait a week or two for the results. I really don't know what to expect. All I know is that they start the study on room air, and only turn on oxygen if they go below 80 for 2 minutes. And the nurse had to turn on the oxygen I think within the first hour. She started it at 1/8 liter, but later I saw it was at 1/4 liter (his usual amount).

Now I am with Jesse waiting to see an eye doctor - mostly about the nystagmus. I think his plugged tear ducts have finally resolved, just within the last couple weeks.

The next big test is the heart cath - now scheduled for August 13th. It is not supposed to be overnight, but please pray that that goes smoothly as the anesthesia and ventilator scare me.

Kristan

update - continued

The doctors were not able to fix the pH machine, so we were discharged late Monday night and got to Grandpa and Grandma's home around 10:30pm. I hopefully will hear in the next few days whether we have to redo the test for the full 24 hours, or if the 7 hours will give them enough readings. The first hour after inserting the pH probe Jesse was VERY unhappy, but he did finally get used to it and then we had a fun day at the hospital. We got to visit with lots of nurses who were so excited to see how he had grown. On Monday Jesse weighed 17 lbs 13 oz, and was 28 inches long. We took a couple trips to the playroom where Jesse had so much fun with all the toys! He was rolling all around playing with toys while I kept trying to keep him from getting all tangled up in the wires.

I also had the opportunity to have a nice lunch with Mary, AnnaSophia's mother, and then even took Jesse back to see AnnaSophia and Steve. AnnaSophia looked good, but she was very fussy - either in pain, or just unhappy about her whole situation. But it was so wonderful to be able to see her and think of all that God has done for her, and for all of us. There are so many similarities to things that have happened to her and Jesse. I am so thankful that God brought our 2 families together.

Jesse goes back in to the hospital tomorrow for a 2 hour swallow study in the afternoon, and then will be spending the night for a sleep study. Please pray that the sleep study goes well and he is able to sleep. It seems like it will be difficult being hooked up to all sorts of probes.

Sam and I had a good day with Grandma Wanda, while Collin has been at "Chess Camp" (in Denver, all day Monday-Wednesday and he is loving it!) Chad and Matt are back taking care of the farm. I am looking forward to getting back Thursday after all these appointments.

Kristan

A Good Echo

Jesse and I are here at Children's for all of his tests/appointments. We started off with an echo of his hear which showed the pulmonary pressure to be around 30 - a great improvement from the June reading of around 70! It looks like the increase in medication is helping. Dr. Ivy met with me to discuss things. He would like to do a heart cath in August that will give an actual measurement of the pressure (the echo is only an estimate). The cath also measures his response to oxygen and medications to best determine his treatment. Fortunately the pressure was lower this time, otherwise Dr. Ivy said he would have had to start him on other medications today.

After those appointments we had the pH probe inserted. It is a thin tube that goes through a nostril down the esophagus to right above the somach. It is attached to a small monitor where I can see the pH reading. This is used to diagnosis reflux. I have to push some buttons to tell it when Jesse starts and stops eating, and when he is either lying down or in an upright position. This helps the doctos tell if certain positions, activities, foods, etc. cause reflux. Jesse is having the test done because sometimes kids aspirate the fluid into their lungs, and that could be contributing to the pulmonary hypertension. Around an hour ago the machine started to malfunction - it's giving really strange reading - very low and even negative numbers. Now after some time trying to fix it they have given up and I think we are going home. I'll write more later.

Kristan

Praise God for AnnaSophia's New Heart

Early this morning God provided a miracle - a new heart for our little friend AnnaSophia. She has come off the bypass machine and the heart is beating! Praise the Lord! Please pray for AnnaSophia, and also for the donor family as they grieve the loss of their child.

Kristan