When Trey was only a day old, he stopped breathing in the hospital and had to be suctioned out. He produced a lot of extra phlegm. When we took him home, I became an expert in suctioning and CPR. He continued to have times were he would look like he was choking and would stop breathing. We were so worried that Trey didn't even sleep in his bassinet, instead, he slept in his car seat in between Jason and I.
One night when Trey was 2 weeks old, I woke up with a start. There hadn't been much sleeping in our house.....there really hadn't been any sleeping for me for the two weeks that he had been alive. I was too scared that if I went to sleep that I wouldn't be able to hear him having one of his choking spells. This night I had finally succumbed to sleep, so when I woke up it was almost as though someone had called my name and I almost jumped out of bed. I looked down at my sweet baby and he was sound asleep, looking peaceful and angelic, like only new babies can. After what was just a moment of this serene scene, Treys' eyes and mouth popped open in a silent attempt to gasp for air.I was paralyzed for a moment and was struck by how silent he was. I knew at that moment that the Spirit was watching over us and had woken me up so that I might be able to help this precious baby live. Picking him up I yelled for Jason to wake up and get me one of the many blue suction bulbs that we had stashed around the house. I turned Trey over and gave him some blows to the back and to my horror he was still not breathing and his skin was purple. It was terrifying to watch this small new baby fight for air. Jason was in shock and asked if he should call 911, giving him an affirmative nod, he ran off to do that.
It was a moment like in a dream where you are trying to run but your feet feel like they are being sucked into mud. I remember it feeling like each moment was stretched to feel like eternity. I put my finger in his tiny mouth to make sure there was no obstruction and flipped him over again to give blows to his back with the palm of my hand. Finally after searching the whole house to find one of our 10 suction bulbs, Jason finally found one and brought it to me. I was aggressive and put the bulb all the way down Treys' throat and suctioned up an amazing amount of phlegm. Finally a blessed scream came out of my baby's mouth. Just second later, 1st responders came to the door of our house. We rushed Trey to the hospital, but everything would be o.k.
We started visiting many doctors to find out why he had this choking problem and felt like we hit brick walls each time. At the same time, I was worried about the rash on his skin. I was told that it was the newborn rash/baby acne. I had already had 3 other kids and had never seen baby acne like this before. We were told that if he persisted with the choking that we could take him to Primary Childrens' Hospital for testing.
That is exactly what we did, and spent a week there. Trey had every test under the sun done on him and at the end of the week we were no closer to an answer. I can't tell you who many times I was asked if he was my first baby. Usually when you are asked that you are gushing with the pride of motherhood, but I just wanted to scream..."No, he isn't my first, I have three other kids and I am not just imagining this!"
I began to notice that along with the rash, that Trey seemed swollen all the time. Thankfully, the Lord was mindful of us and sent us an angel in disguise. While I was shopping, more for the sake of getting out of the house than for any need, a saw an old neighbor of mine. She asked about my baby and came to look at him. Most people say "Oh, what a beautiful baby," but Trey was covered with a horrible rash and was swollen. He was still beautiful to me, but I was worried about what my neighbor would say. She looked at him and said, "Wow, that is the worst allergy rash that I have seen." It was like the Heavens had opened and the Lord was speaking directly to me. I knew that I had found a key to our puzzle.
Trial and error experiments followed. We are still trying to get a handle on his alleries today and he is 3 1/2 now. But I had found a blog about MSPI (milk soy protein intolerance) and we tried that and symptoms did get marginally better.
Things from this point leveled out to our own version of normal. We still had a lot of throw ups and incessant diarrhea, no more choking and I was grateful for that. When Trey hit 2 and I wasn't worried about him choking on his own phlegm anymore, I started to be aware of the fact that he didn't speak, he didn't even babble. He had been an almost silent child, save when he was crying. I consulted physicians about this, but we were still worried that his body weight was significantly low and he had been termed 'failure to thrive'. So speech went on the back burner and we continued to battle allergies and eczema. I read to him just like with my other children but he didn't really respond. I noticed obsessive behavior like opening and closing doors over and over. My family dubbed him 'the doorman', when we all got together. He didn't play with the kids, but if there was a door that he could open and close, then he was happy. Having my degree in education, I think that I knew at this point that he was at least slightly on the autism scale, but I was still more worried about him being able to eat and keep it down.
As every mother with a 2 year old knows, they begin to get their own ideas about things. Trey was no different, however, he just couldn't express to me what he wanted. Because of this, his tantrums were really something to behold. He would lose all touch with reality, and I would think, "This is definitely not normal". When he was in control he would make eye contact and connect with me, but I would question myself every time he had one of his tantrums.
I decided that no matter what, I would figure out what he wanted and do whatever it took to communicate with my silent boy.
(No I didn't lock him up, he did that himself...not that it hadn't crossed my mind:)
All I can say is "Thank Heaven for Rachel!" Signing time has been amazing for Trey. I made it a rule that everyone in my family had to learn to do at least simple signs. My other children rose to the task and Trey changed and wasn't the tantrum throwing, door obsessed boy that I
knew anymore. He would seek out his siblings and try to sign to them what he wanted, and when we encouraged this behavior and celebrated his little victories, he beamed with pride. That is one thing that has been a tremendous blessing, the ability that we have gained to appreciate the little victories in life and to celebrate them to the fullest. As an example, when Trey had just turned 3 and we had been taking everything (except hot dogs) out of his diet, he had his first solid bowel movement since being born. (I know that's gross, but it was a huge milestone for my family) We went out to eat as a family and had a party for the rest of the day!
So here we are, ready to tackle the next challenge in Trey's life, that of speech. I don't know all of what needs to happen, but I am going to tackle each trial as best I can with the help of God and my family. I am sure that the Lord will continue to place people in my life that will aid in my efforts. Trey is perfect in my eyes, but I certainly don't want to close those eyes to his challenges. I want to help him through them.
So now I am on to tackle the problem of how to help him develop his language. Just for the record, I am not trying to do this on my own, however, after all that we have been through I believe that mother's are given the gift of the Spirit to help them be the best expert and advocate that their children have. We still go to the SLP and early childhood educators to help all of the time, but I know that their is something else that the Lord would have me do to help Trey. I just need to search and pray for what that is. Trey is so smart and talented, you have never seen a kids so technologically savvy at such a young age. He has an engineers mind, which is almost impossible for me to understand since my husband and I think so different from that.
I imagine that there is a lock inside of Trey's brain that is preventing him from displaying all of the knowledge and gifts that I KNOW that God has blessed him with, and my job is to figure out how to unlock it.
I will post things that I try, my attempts, successes and failures in the hopes that it will help myself and others.