Trey 3 month update

At Trey's two month appointment our pediatrician, Dr. Mark Adams noticed that Trey was wheezing at rest. He told me to watch him for a couple days and see if it continued. It did so I called his nurse and she said they wanted him to start taking zantac. They also request a consult with the pulmunologist in town, Dr. Yalamanchali (previously known as Dr. Chowdry). We agreed and went to see him on September 27th. Up until that appointment is was the hardest part of my day trying to give Trey the zantac. He threw his head back and fourth and gagged and coughed every time he took it. I thought it was because he didn't like the taste of it. We found out he didn't like it because it was probably uncomfortable to take (it has some alcohol in it which burns slightly). After a long discussion with the doctor he recommended Trey get an Upper GI study as well as a Rehab Swallow Study.  They were able to get us in that day within the hour. We went to the hospital I used to work at, Lutheran, to the radiology department where they had him drink Barium and watched him swallow on x-ray. He did so well during the tests. He didn't cry once.

I have to share that at this point I have never been in an upper GI test nor have a seen a swallow study done on a patient. I worked at that hospital for 6 years and had plenty of my patients go for these tests but it was completely different being there with the patient as my son. I held it together as best I could during the tests. The first one was completed and they saw some penetration of the barium into Trey's airway. We went next door to the swallow study where the speech therapist fed him more barium from a bottle and watched him aspirate 50% of what was in his mouth into his lungs with out coughing. He was silently aspirating. My heart sank the second they stopped the test and added thickener to his bottle. I knew at that point there was a problem. Fortunately, he was tested with the nectar thick liquids and he was able to safely drink this without aspirating. The speech therapist (ST) told me I had to stop breast feeding immediately and give him formula with rice in it. To be completely honest, I was shocked! I held it together to ask a few questions like: is there a way to thicken breast milk, what if I continued nursing him, what about commercial thickeners? They were pretty confident that formula was the best choice! I completely disagreed, but kept quiet and left the radiology department with a lot of questions and was very discouraged. I stopped back at the doctors office and he came out to talk to me. I told him what the ST had told me. He said I could thicken breast milk with rice for now and to see him back in 6 weeks.

I left there and went to the parking garage. I hate to admit it but fear and worry took over. After I gathered myself, I drove to Walgreens and bought my thickener and rice and headed for home. There was no explanation for the way I was feeling. I was completely out of control. God has a way of showing us that every once in a while. It was as clear to me then as it is now. I did not like what was happening. I was angry and sad. I was not ready to give up nursing. I did not want to give Trey bottles. I did not want to pump. I had too, so I did. It took a lot of encouragement from Brad for me to get to a place of acceptance. I know that something positive will come from this challenge in our lives right now. God has blessed us in so many ways. The thickener is working. He is getting oatmeal 1 TBSP per 2 oz of breast-milk. We are using the Dr. Brown #3 nipple and sometimes a #1 with a small slit in it. As long as the milk is warm and thick, Trey is able to drink without coughing, gagging or aspirating. His wheezing stopped within 7 days of thickening his bottles. He was also started on Prevacid for acid reflux.

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Here are some pictures of the girls with Trey! He is a really happy baby although he isn't smiling in any of these pictures:) He currently weighs 17 lbs 11 oz and wears 9 month clothes. The doctors say he is developmentally right on track. We are going for an MRI with sedation at the end of this week to see if there is a cause for his difficulty swallowing (dysphagia).  I will continue to remain optimistic that he will surprise us all and learn to swallow before the 4-6 months that the doctors and speech therapists have predicted. Afterall, we serve a mighty God who is able to do far above what we can ask or imagine. (Eph. 3:20) Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. NLT