The Happy Vomitter

One doctor said that some kids with reflux who vomit but gain weight are commonly called "happy vomitters". It seems that Caleb may fall into this category. We are happy that he is gaining weight, but are hoping and praying that his vomitting will stop. Caleb is learning how to pull out his feeding tube so we are feeding him more by mouth. Last night was the first night he hasn't had a tube in a long time. That's good in a way, but it also means that he didn't eat as much.

Hurricane Wilma knocked out our power, so that has increased the stress level a bit.

We could really use your prayers, especially for Janet during this difficult season.

Psalm 91:14-16 (New King James Version)

¹⁴ “Because he has set his love upon Me, therefore I will deliver him;
I will set him on high, because he has known My name.
¹⁵ He shall call upon Me, and I will answer him;
I will be with him in trouble;
I will deliver him and honor him.
¹⁶ With long life I will satisfy him,
And show him My salvation.”

Caleb's Cast

The results of the ultrasound and Monday revealed that one of Caleb's hips, the one that had been said to have "laxity", has not developed completely. If nothing is done, he wouldn't be able to walk. So we have to add an orthopedic doctor on our lists of regularly seen specialists. Supposedly, Caleb will have to have some type of temporary cast or sling in order to help his hip develop. We are still waiting for more info about this. We're not really sure if this has to do with his hypotonia or is a seperate deal.

Do please pray for his physical development that his muscles would develop great and that he would learn how to use them. Thank you so much!

Doctors and et cetera

Here's Caleb's Itinarary for the week:
Monday - GI Doctor to discuss feeding and vomitting issues, Ophthamologist to look at eye infection
Tuesday - none
Wednesday - Sonogram to check progress of hip laxity; physical therapy, occupational therapy, speech therapy
Thursday - weekly Cardiologist visit
Friday - none (yet!)

Yesterday, Tuesday, he did two feedings in a row completely by mouth, we did not need to use the tube. This was extremely encouraging. He did have a few episodes of vomitting, though. He's getting chunkier. That's good.

The Pump That Let's Us Sleep

During the night now, Caleb is fed via a pump that is connected to his feeding tube. This has a couple advantages. All we have to do in the middle of the night is add formula into the pump and then reset it. This saves us time. We also have a portable backpack so we take his pump with us if we need to.

This week Caleb will see the opthomologist on Monday for his clogged tear ducts. On Wednesday, he goes for physical, occupational, and speech therapies; he will also get an ultrasound of his hip to see if his laxity has improved. We also are hoping to get him to see a gastro-intestinal doctor to see about doing something for his occassional vomitting and diarrea.

One concern we have is Caleb's hypotonia, his floppiness. He obviously is growing and becoming stronger and moving his head and arms more. But we are not sure what long-term effects, if any, he will have because of this. Hopefully, there won't be any. We are trying to work hard doing physical therapy with him. We also will be seeing a neurologist soon to follow this up.

Overall, we are feeling that we are making progress. We are on a good road and are trusting the Lord. We are getting into a pattern that is a bit more manageable.

Thank you all for your prayers. Please know that we read and appreciate all the posts.

Hanging Out With Daddy

Grow Baby, Grow

Caleb is in about the 50th percentile for weight for a baby boy his age. His exact weight depends on what scale you use. Yesterday at the cardiologist he weighed 10 lbs, 15 oz. Today at the pediatrician he weighed 10 lbs, 11 oz. All baby scales are not created equal. Hopefully, he will keep gaining weight.

Feeding him is somewhat of an ordeal. We have to check the placement of the feeding tube. This is done by connecting a syringe to the tube, placing a stethoscope near his belly button, quickly inserting the air into the tube while listening for a swishing sound. If we hear the sound we know the tube's in the right place. Next, after preparing his bottle, usually 3 ounces, we feed him via mouth for 15-20 minutes. He usually takes about an ounce, sometimes more. Whatever is left we feed him via the tube. This is called "gavage" feeding. The disappointing part of all of this is when he throws up during this process, which usually happens 1-2 times a day.

He's had diarrea for the last couple days and a really bad diaper rash. We also found out today that he has a little infection in his mouth. So we're stepping up the sterilization of all the bottles, etc.

We have another appointment of Thursday with the cardiologist, Dr. Mas. She says that his heart is still failing but that it is a bit better. I tell Janet not to tell people that his heart is failing because it sounds so fatal, which I guess it is if it fails long enough. Basically, his heart "failing" means that if something doesn't change they will have to intervene. This time frame is probably within the next couple weeks. When we were in the hospital, all of the doctors decided that they didn't want to do anything until he weighs six kilos (13.22 lbs).

We continue to pray the Lord's healing hand will be upon him. Thank you for all the posts. They are an encouragement to us.

Today after the doctors visit we had lunch as a family at the Miami Cuban restaurant La Carretta. I ordered a chicken salad stuffed avacado and a cheeseburger. My wife ordered ropa viaja, which is shredded beef in a sauce with rice.

Caleb can't really go out in crowded places like church or birthday parties, but we can take him out to places that aren't crowded.

Update

Caleb is doing ok. Tonight he threw up a couple times and we were nervous for awhile.

Yesterday the baby of a friend of ours died. Janet spent much time with the mother when we were at the hospital after Caleb's surgery. The news was quite a shock to us, a real downer. He died at home, they did CPR, called 911, etc. The mom called Janet shortly after her little boy died. This baby boy had a very similar condition to Caleb. Our hearts go out to our friends; we have been praying for them.

Tommorrow we hope to see the cardiologist. Caleb will be weighed, receive an echo cardiogram and an EKG.

Blessed be the name of the Lord.

Home Again, Home Again

We are going home today. It will be good to have the whole family together. Anytime one of us is out with Genesis, she always asks about KB and the hospital.

The decision has been made to go home with a NG tube. This is a tube that goes up Caleb's nose and down into his stomach. Janet has learned how to insert the tube. Caleb will eat primarily by mouth and then whatever he doesn't take by mouth will be inserted into the tube. He hasn't vomited in many days now and seems to be gaining weight consistently.

We have also been keeping an eye on his hypotonia. Hypotonia is low muscle tone and "floppiness" that we have posted about before. We are really trying to work with him doing different exercises we have learned through the physical and occupational therapists.

As we have been adjusting to this new lifestyle so many people have supported us through prayer. Where would we be without you? Where would we be without the gracious hand of our Lord, Jesus Christ, to carry us and cover us?

We have, at times, found ourselves doubting, questioning, even getting a bit upset. Frankly, it's surprising and revealing. You don't think your capable of certain feelings and then you find yourself struggling with them. I read a devotional this morning that said that trials don't make you upset or bitter; they only reveal the anger or bitterness that's already in your heart. So this trial has helped us to see how needy we are. It has helped us learn about God's grace unto us and his faithful love for us. For that, we are thankful.

We thought this was going to be a short visit...

We are still here but hoping to be discharged within the next few days unless we decide that the G-tube is the way to go. The MRI results are back and we are waiting for the neurologist to tell us his interpretation. We are also meeting with the pediatric surgeon that will perform the G-tube operation if we decide to go that route. Hopefully these GI tests will help us decide what is best for Caleb. He looks a bit chunkier these days since they stopped giving one of his diuretic by IV and stopped the other one all together. I was so happy to read so many posts from the Hypoplastic Right Heart Web Site. Thanks for your encouraging words and prayers. For those of you reading the posts and wondering what HRHS, that is the short way of describing Caleb's heart condition and the condition of a number of other little miracles we have met during the recent months via an online support group for families of babies who have problems with their right ventricle and valve. We plan to post MRI results soon. Thank you all for your love!

PH Test Results

Over the last several days Caleb has had two tubes in his nose - one for feeding ad one for a PH test. This is a test that measures what's going on in his esophogas and stomach. This test came back with very positive results. The doctor said he doesn't have reflux disease. All the measurements were normal. Caleb will undergo a non-invasive test next week to check for bile reflux. The put a couple drops of a solution in his milk and take some pictures of his bowels after the feed; this will tell them if he has this other type of relux. If this test comes back normal it means that we will probably not have to get a G-tube.

Caleb is still vomitting pretty consistently; thus he's not gaining weight. Let's pray that this changes!