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

Waiting for More Tests

Jesse continues to do very well - getting stronger every day. He is getting closer to being able to sit up, and standing with assistance. He got his first tooth last week. He babbles quite a bit - ba, ba, ba and da, da, da.

It looks like the increase in medication might be helping. The last couple days his oxygen only falls to 83-85 (instead of 80) when he isn't on oxygen. We have more appointments scheduled in July. On July 14th he goes in for an echo of his heart at 9:00am and then will see Dr. Ivy, the pulmonary hypertension specialist at 10:00am. He will then advise us as to how soon we need to do the heart cath. Then at 11:30 we go for the pH Probe which is a 23 hour study with a very thin tube through his nose down into the esophagus to measure pH, to check for reflux. Then on July 16th he will have swallow study, about a 2 hour test and then spend the night again for a sleep study. The waiting is so hard. I am hoping we find some information that will help us to treat Jesse.

Please pray for little AnnaSophia and her family - you can check her blog for the latest update www.ourannasophia.blogspot.com . She is in Denver staying at the Ronald McDonald house awaiting a heart transplant.

Kristan

Some Encouraging News

I spoke with Jesse's cardiologist on the phone yesterday and she gave me a little more encouraging news. She didn't really think that the pulmonary hypertension had gotten worse, it just hadn't gotten any better. It may just be taking longer to resolve than expected.

Latest Doctor Appointments

Today we had a full day at Children's Hospital starting at 9:00am and ending at 4:30pm. We started the day with an upper GI to check for aspiration. The test was normal - showing no reflux or aspiration. After lunch we saw our cardiologist and had another echo done. The echo showed that despite the increase in medication, that the pulmonary hypertension has actually gotten worse in the last few weeks (systolic reading of over 70 now). Then we saw an ENT doctor who did a scope. Jesse's tonsils are small, but adenoids obstruct about 50% of his airway. The doctor did not think surgery was necessary solely based on that, but wants to wait for the sleep study which is scheduled for July 16th (unless there is a cancellation and we can get in earlier). He is also scheduled for a swallow study at that time. All of these tests are to try to determine if there is a cause for the pulmonary hypertension, which would then be called secondary pulmonary hypertension. Once they have gone through all of the testing, if they can't determine a cause it is then called primary pulmonary hypertension. It would be much better if a cause (that is fixable) can be found. From the healthatoz website:
Prognosis
Pulmonary hypertension is chronic and incurable with an unpredictable survival rate.
Length of survival has been improving, with some patients able to live 15-20 years
or longer with the disorder.

This evening Jesse's cardiologist called. She had talked to Dr. Ivy (the pulmonary hypertension specialist). We are again increasing Jesse's medication (Sildenafil). Orders are in for the cardiac catheterization, so that will probably happen before the sleep study. She is trying to get Jesse in to see a pulmonologist this week, or sometime soon - I told her I didn't want to wait until the July16th trip to Denver.

I've been thinking about all that has happened since Jesse's birth. I was comfortable in "Holland" and glad to finally get out of "Siberia" and now trying to think where I can liken our current situation to and can find no analogy. I know it isn't somewhere I want to go. But I am trying not to fear for Jesse's future and to trust God, wherever He takes us.

Where He Leads I'll Follow
William A. Ogden, 1885
http://www.cyberhymnal.org/htm/w/h/l/whlifoll.htm

Sweet are the promises, kind is the word,
Dearer far than any message man ever heard;
Pure was the mind of Christ, sinless I see;
He the great example is, and pattern for me.

Refrain
Where He leads I’ll follow,
Follow all the way.
Where He leads I’ll follow,
Follow Jesus ev’ry day.

Sweet is the tender love Jesus hath shown,
Sweeter far than any love that mortals have known;
Kind to the erring one, faithful is He;
He the great example is, and pattern for me.

Refrain

List to His loving words, “Come unto Me”;
Weary, heavy laden, there is sweet rest for thee;
Trust in His promises, faithful and sure;
Lean upon the Savior, and thy soul is secure.

Refrain

I'll keep you updated as to our further appointments. We thank everyone for your continued prayers!

Kristan

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