Answers

I just want answers. We have had so many doctor's appointments and procedures, and there is still no diagnosis. They still don't know why Simon is losing weight. They have a lot of idea's. There are many things it could be.

I keep going back in and keep being referred to another doctor. This one doesn't know what to do, so we get passed on to the next one. Results of this test are inconclusive, so lets try another one. All I want is to know what is wrong so it can be fixed.

Simon is now almost 6 months old, and has not even gained 2 pounds from birth. Average growth for a baby is to approx double in weight by 5-6 months. That would mean that Simon should be approx 16-20 lbs. He currently weighs 11 lbs 11oz.

I pray daily that we will get answers. I know it's all in God's time, and not mine as I would love to think. I am learning patience like you wouldn't believe. I keep telling God that this doesn't fit into "my" plan. He knows.

I have learned to give my children to God. I have to do this daily, because every day I try to take them back again. They are God's children. He has granted me the gift of raising them. I am blessed with being their mother and being able to teach them to honor God in all they do. When I give them to God, I rely on Him. He guides me. I know there is nothing I can do, and that hurts, but God has control.

This passage has been a comfort to me in this stressful time.

Philippians 4:6-9

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things. The things which you learned and received and heard and saw in me, these do, and the God of peace will be with you.

Update on Simon

I meant to post an update on Simon last week, but that didn't happen. On Tuesday we went in for the VCUG. They decided to take a quick picture to make sure there wasn't any more contrast in his system like there was the last time they tried to do this procedure. Guess what. There was still contrast. After two weeks. I was a little surprised. They sent us home without doing the procedure again. We rescheduled and are waiting.

On a positive note, Simon is sleeping better. He is also eating better, without spitting up much at all. He is happy. He is smiling and laughing. He would smile before, but not very often. Now he is smiling lots and even chuckles. It is adorable. We have the other VCUG scheduled for Wednesday, and I will let everyone know how that goes, and if we have to reschedule again or not. Please pray that all is okay.

It has been a waiting game from the beginning. There isn't much that I can do, and that is the worst feeling any mother can have. Watching your child that is sick or hurt or anything, and not being able to help. I have been feeling pretty inadequate. I am not able to tell what's wrong when he cries. The other boys were easy. I knew what they wanted and when. Now, I have this beautiful little one, and I have no idea what I'm doing. Baby #4 and I thought I would be a pro. Quite often I am debating with myself about my ability to care for him. The first three did fine, but Simon is different. Why am I not able to keep him healthy? Why am I not able to keep him happy? Why? Why? Why? I have no answers. I feel like I am not a good enough mom. I feel like I have failed.

I find my rest in God. I read my Bible, and don't find answers to my questions, but I do find peace. I find comfort. I feel like God is giving me a great big hug and telling me it's okay. It's hard to explain. Have you ever felt it? Has God ever made you feel better about the mess you're in without changing it at all?

Simon

It didn’t happen all of a sudden, but over a long period of time so it wasn’t that noticeable. The journey we have taken over the last couple of days has been hard, crazy, and a little scary. The only explanation we have for things turning out the way they did, is the grace and mercy of our Lord, Jesus.

It all started back in November. We brought Simon into the doctor because he was sick. It turned out he had bronchiolitis. At this point, he weighed 13lbs 6oz. He was put on medication, and we thought everything was fine. We proceeded with our plans to go to Tampa for Thanksgiving. When we got back, he was fine for a few days, then started screaming all the time. He wouldn’t sleep. He was up all night for a couple weeks. We tried everything. Driving him in the car didn’t work, he hated the swing, nothing was working. Finally we took him into the ER.

When he was at the ER, they weighed him and he was 12lbs 9oz. I was told that the difference in weight was just because the scales were different. I told them that he has been spitting up a lot ever since he was born, and there might be a problem relating to that. They did so many tests on him. They did x-rays, ultrasounds, blood and urine tests. They found nothing wrong.

We went home and went through more sleepless nights because nothing had changed. We brought him in to see the pediatrician and he sent Simon to the ER. There we were again with more tests. More blood and urine, another ultrasound, and still there was nothing wrong. The ER doctor came in and told me not to get so worked up when a baby cries. I am surprised I was able to hold my tongue. I don’t think she realized that I had three other kids at home, and this is not normal, even for this one. They sent us home with a prescription for Zantac for reflux cuz he spits up, and a diagnosis of colic.  ?!?!?!  Can anyone say bandaid.

Simon was doing fine after a few days. We kind of got into a routine of putting him to bed at 1am and getting up at 4am and traded nights when we would sleep. After a while things started to settle down a little bit. He started sleeping more, but was still spitting up a lot.

I noticed towards the end of January that Simon’s diapers were really loose on him. He shouldn’t be going down a size in diapers. On Tuesday January 31st I brought him in to the pediatrician again and he weighed 11lbs 6oz. He had lost a total of 2lbs. The doctor finally said that that isn’t just a difference in scales, and he needs to be admitted to the hospital to find out what is wrong. They labeled him “Failure to Thrive”.

We drove to the hospital and went through the admitting process, got a room, and saw a doctor. Finally things were being done. The doctors had different tests already scheduled to find out the problems. I talked to probably 3-4 different docs. They took blood and urine again. He weighed in at 11lbs 5oz. Everyone was so nice and answered my questions and informed me of everything. They noticed his arching back right away and scheduled some tests involving the GI docs.

They wanted to know exactly how much he was eating, and because I am breastfeeding, there isn’t really a way to tell. I ended up having to pump and then feed him a bottle. Very Frustrating. I ended up pumping every two hours, day and night, the entire time we were in the hospital. I didn’t get much sleep.

Because of his spitting up so much, they started him on Prevacid. We spent the rest of the day waiting and praying. There wasn’t really much to do there. I was able to get free hospital food, but that isn’t really good news.

On Wednesday February 1^st, they weighed him again. He was the same, 11lbs 5oz. They told me that was good because he wasn’t losing weight. I knew it meant another night in the hospital though. The doctor came in and updated me on the results of all his blood and urine tests. He had a Urinary Tract Infection (UTI). They put him on antibiotics for that. They did an ultrasound later and found he had a dilated kidney. He also had an Upper GI Series. They had him drink some barium stuff and then watched on a video x-ray type of thing as he spit it up. They called it “Severe Reflux”. The docs wanted to see him gain some more weight and were thinking that the breast milk might not make it happen fast enough, so they want me to supplement with a formula called Neocate. It’s a high calorie formula, that is also insanely expensive. More waiting and praying.

On Thursday February 2^nd, they weighed him again. He gained a little, 11lbs 13oz. They came and did a sweat test on him. It didn’t work. He didn’t sweat. Because his left kidney is dilated, he might have vesicoureteral reflux. They had to get another urine sample to make sure the infection is gone so they can do a voiding cystourethrogram (VCUG).

I know, that’s a lot of big words. Basically, his urine might be flowing back to his kidney, instead of out the way it’s supposed to go. The procedure checks the direction of the flow.

I was spending a lot of the time there alone. Scott was either working or with the boys. They stopped by daily, but only for a few minutes. I did talk to a lot of people on the phone and through texts and had one visitor.

On Friday February 3^rd, they weighed him again. He lost a little, 11lbs 11oz. He was still up from when he was admitted though. They weren’t able to do the VCUG because there was still barium in his system from the Upper GI. We scheduled the VCUG for Tuesday February 14^th. They let us go home.

We got home and we all feel better. Simon is even smiling. He followed up with the pediatrician on Monday February 6^th, and weighed 11lbs 11oz. He is acting better, and hopefully he will keep getting better.

The only thing I keep thinking is that we never would have found out about the UTI or dilated kidney if we hadn’t gone to the hospital. Simon never had a fever. It could have been really bad. We thank God for the mysterious ways he works. We know He is in control. I will post again after the 14^th with more results.