The First 2 Weeks

We arrived home from the hospital on a Wednesday and were scheduled to meet with the Pediatrician the following Friday.

In the meantime, all of us were "coping" with the news and doing research on our own about Down Syndrome. My parents also did some research and felt inspired to contact a friend and Neonatal Pediatrician, Elder Devn Cornish, that they knew to seek advice. This conversation was one of the best things that happened for our family. Elder Cornish told my parents that their 6th child has DS. All he could say was what a great blessing their son has been in their lives. He said DS children are not hard to manage and are happy. He said they are remarkably spiritual people and this will be a spiritual blessing beyond our imagination. He also told us that grief is a normal process and once the shedding of tears and grief has passed we will see this as a wonderful blessing and experience great joy! I found great comfort in his words and a relief to know that "grieving" was normal and knew everything was going to be ok.

On Friday, we arrived at the Pediatrician's office and he had printed out numerous sheets of info about Down Syndrome and passed them over to us. He suggested we watch a video online and to stay away from websites other than the main website for DS. We, of course, had a million questions and Devon did most of the talking because my voice was still too shaky and I couldn't seem to have any conversation without crying.

Devon specifically asked the Pediatrician, point blank, "How much experience do you have working with Down Syndrome?"

He responded, "We're all trained to know what to look for and what to do..."

Next question, "We've heard they can have heart problems...should we have his heart checked?"

He responded, "Well, there is no heart murmur, but we will schedule an Echo within the next week."

Then, Devon asked, "I've read that they can tend to have intestinal problems...should we have his intestines checked?"

He said, "Is he pooping?" "Yeah, a little," we said.

"Well, then you don't need to worry about that."

And the questions continued...

I was concerned about the fact that he wasn't eating very well and was very lethargic. He had also started throwing up after eating. It was bright yellow in color and seemed like much more than what he was eating. At the time, I was lucky if he would drink half an ounce to an ounce of breastmilk. The Doctor attributed it to Reflux. He told me that Reflux is a very common problem with babies who have DS. He wrote out a prescription for Reflux and then weighed him. He had lost 2 more ounces since leaving the hospital. The Doctor wasn't concerned and attributed it to being newborn, small, and possibly that he was Down Syndrome. We left and that was that.

Over the weekend the vomiting continued and became worse! It turned into projectile vomiting. He was unable to hold anything down, his face was looking thin and his coloring was bad! I thought he might have jaundice so I called the doctor, took him into the office to have him tested for jaundice, and they weighed him again.

He had lost another 4 ounces since Friday. Still the doctor wasn't concerned. The test results came back negative for jaundice. The Doctor called and told me to make sure Jack was eating 1.5 ounces every 2 hours and to keep him held in a upright position for at least 20 minutes after every feed. He also wanted me to bring Jack back to the office on Friday for another weight check. So, I took Jack home, set my alarm on my phone for every 2 hours, and wouldn't allow myself to put Jack down.

The week continued. Luckily, both my mom and mother-in-law were there to help with the kids and give me moral support.

During that week, Jack had an appointment in the Radiology Department for the Echo on his heart. As we we sat in the waiting room, I watched other women who were pregnant waiting for their Ultrasound and I began to cry. I'm still not sure why? Part of me was sad because I looked at each of these women, with their beautiful baby tummy, and remembered that a week earlier that was me. However, I had no idea Jack would be born with DS and wondered if any of these women would share the same fate. I was still dealing with my emotions and trying to wrap my head around all of the shocking news! Shortly, Jack's name was called and we were led back to a dark room by a tall, un-friendly, man who would soon be doing Jack's Echo. I undressed Jack and laid his tiny, frail body on top of the cold table and the Echo began. Jack was very calm and relaxed, but awake! The Ultrasound Tech looked at me and asked in a monotone voice, "Did they tell you to sleep deprive him before this?" I said, "No, why would I need to sleep deprive him?" I was thinking...{{Hello? He's only 7 days old? How am I supposed to sleep deprive him? Dummy?!}} The Tech answered, "SO HE WOULD SLLEEEEP!" My mom and I exchanged glances and rolled our eyes...oh, brother!

Each day, we would attempt to feed Jack. He was so lethargic that it was nearly impossible to get him to suck on the bottle. I had completely stopped trying to breastfeed him and was pumping and feeding him a bottle so that I could keep track of how much he was eating. It would take him nearly an hour to finish an ounce. As soon as he was finished drinking, we would immediately put him in an upright position and hold him there hoping he would keep his feed down. However, every meal was projected back up and was becoming worse and darker in color. It was no longer yellow, it didn't look like milk, it was green...dark green! Again, the Doctor wasn't concerned. He wanted me to wait until Friday to bring Jack in to be weighed and continued to attribute the vomit to reflux. In the meantime, I was exhausted spending all day pumping, feeding Jack, holding Jack, changing Jack's constant spit-up-on wet clothes, and hoping/praying for a miracle that he would hold his food down and start to plump up and wake up!

Jack was gray, thin, and, at times, seemed nearly comatose! There were times he would briefly open his eyes as if to look at us in pain. When holding him, he would squirm and sometimes cry out as if his tummy was hurting. I remember telling my mom that I felt something was wrong with his intestines, but what did I know?...the Doctor kept reassuring me that everything was fine...so why was there any need to worry?

Finally, Friday morning came. My mom and I arrived at the office hopeful that Jack had gained some weight. We undressed him, laid him on the scale, and it read 4lbs 13oz. The nurse said, "that can't be right...take him off the scale, I will re-set it, and we will weigh him again." So, I took him off the scale, we re-weighed him and it still read 4lbs 13oz. Again, the nurse was unsure about the weight, didn't think it was right, and told me to follow him to the other room to weigh him on a different scale. We weighed him and he was still 4lbs 13oz.

I was in SHOCK! The nurse told me the Doctor was out of the office and he would have him call me later. I was trying to hold back my tears, put Jack in his car seat, and, as we were leaving the office, my mom told the front desk girl to make sure the Doctor called me later that day because I was frantic!!

As we left the office, I had no words...I was frustrated, concerned, and MAD! In the car, I told my mom that I wished the Doctor would just send us to the Emergency Room.

Later that day, the Doctor called and told me he wanted me to start fortifying my breastmilk with formula. He wasn't concerned. The 16 ounces of weight Jack had lost didn't worry him and he put me at ease, which he was very good at! He told me we were going to fortify his feeds and had no doubt that Jack would start gaining weight. He wanted me to call him on Sunday and he would meet me at his office to weigh Jack.

For the next two days, we fortified all of his feeds. On average, babies are expected to gain at least an ounce a day...so, that is what we were hoping for. However, Jack continued to vomit and vomit and vomit. Saturday night, Devon and I asked both of our families to fast for Jack. He had also received a blessing late Friday afternoon and we were fasting, praying, and hoping for a miracle. I knew something was wrong...very wrong, but didn't know what and knew deep down in my heart that Jack would not live if he continued to lose such large amounts of weight. Sunday morning arrived and my mom encouraged me to call Jack's Pediatrician to beg him to meet me as soon as possible.

I called the Doctor and he would not be available to meet with me until 6:30 or 7:00 that night. I hung up the phone in tears. My baby was in pain, unable to eat or keep any food down, and looked awful! I didn't know what else to do...Devon was still in Chicago and even though my mom and mother-in-law were there, I felt extremely alone and terrified!

Soon after, Devon's mom took charge and told me she had had enough and was calling the Pediatrician! She immediately called him and told him Jack looked severely dehydrated and that he was dying! The Pediatrician asked to speak with me and said, "do you think he is dehydrated? Is he having any wet diapers?" I told him I really wasn't sure. I had been so focused on all of the vomiting and attempts to feed him and keep his food down that I hadn't noticed how many diapers I had been changing. Helen, Devon's mom, took the phone back and told him Jack needed to go to the Emergency Room. He told us that if that is what we thought then he would go ahead and phone the E.R. and tell them we were on our way...