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...

Welcome Baby Jack

Now that Jack is 3 months old, I thought I should officially welcome him into our family and introduce him to the rest of our friends and loved ones via the blog!

There are many reasons for not blogging or sharing my feelings about this entire experience, but I now feel that I am in a place where I am ready to openly share my thoughts about our sweet little boy.

First, I would like to preface this post by saying that much of what I am going to share is personal to our family, emotional, spiritual, and and will continue to be an on-going journey. Much of what has happened over the last 3 months was unexpected and something that I would like to write down for posterity sake as well as for others who may or are experiencing something similar.

This definitely has been a joyous time in our lives, but there have also been moments of great sadness, fear, and uncertainty.

With much love and joy in our hearts we are so proud and happy to announce the newest addition to our family and we are so glad that he is here!!

Jack Robert was born October 3, 2010 at 9:30pm. He was 5lbs, 13oz and 18inches long.

Earlier that day, I woke up and was experiencing a few contractions with light spotting. I called the Doctor and he assured me there was nothing to worry about unless my contractions increased. I wasn't due for another 2 weeks and Devon was in Chicago training for a new job. I did not want to be in Labor and wanted the baby to wait until the scheduled induction day on October 8th. However, the contractions continued all. day. long.

My sister and her family had spent the weekend with me and were planning to go home later that day. I kept reassuring her that I was not in Labor and that they should go home. Finally, they packed up their car and left to go home. Soon after, my contractions got worse!! I texted her and told her I was going to the hospital and she told me they would turn around so that she could go to the hospital with me.

She and I hopped in the car at 7:30pm and arrived at the hospital shortly after. I sobbed all the way the way there....I did not want to be in Labor and did not want to deliver this baby without my hubby. I was really hoping the nurse would tell me it was just false labor and send me home. However, once there, the nurse checked me and announced that I was dilated 5cm. The tears wouldn't stop flowing from my eyes! I thought, "how can this be? How can I be in Labor and have my husband 2,000 miles away!!" I was scared, mad, and excited all at the same time. I called Devon and told him we were having a baby tonight and kept him on speaker phone.

A quick epidural, a couple painful pushes, and our cute little purple bundle had arrived. I took one look at him and thought something was "off". He was so purple...dark purple! And, there were no cries! The nurses quickly rushed him over to the warming table to do vitals and were speaking in hushed tones without relaying any information back to me. I thought, "phew, the worst is over...he's here...I did it...yay!" But, there was a dark cloud of unexplained gloominess in the air. I brushed those feelings and thoughts aside and thought it must be because Devon isn't here.

The nurses were still speaking in hushed tones and I heard my OB ask, "Is there a heart murmur?" Immediately, they responded "no" and he nodded his head "ok." I thought, "heart murmur? oh, good, no heart murmur."

The nurses pumped a large amount of amniotic fluid from his stomach and were having a hard time getting his temperature up so they gave him to me and laid him on me skin to skin hoping that would raise his temperature.

I finally got to hold our sweet little boy! He had tons of blond hair and cute chubby cheeks. He was tiny! Tinier than all my other babies. As I held him, he nestled right into my chest and my heart melted! All of these months waiting for him and wondering what he would look like and he was finally here and he was perfect and beautiful!!

After cuddling with him for a couple of hours, the pediatrician arrived to do his evaluation. He walked in the room announcing..."So, we hear he looks like Blake..." I had never met this Doctor before. I had chosen him based on local referrals and other than that had no idea what to expect of him. It was about Midnight and he looked at me confused and unsure of what to say and blurted out..."I don't know if you overheard the nurses talking or me talking to the nurses, but we think there is a slight chance the baby has Down Syndrome...oh, I shouldn't have said anything...I wish I could take that back...he probably doesn't...oh, I shouldn't have said anything...just put that out of your mind tonight and try to get some sleep because he probably doesn't...Besides, if you think he looks like your other kids...he's probably fine...they don't usually look like family members, but he probably doesn't and I wish I hadn't said anything..."

I was still in this euphoric-I've-just-had-a-baby-state-of-mind and couldn't get any words to come out of my mouth?!?! I was frozen and didn't know what to say! I just wanted that dumb Doctor who had just broken my husband-less world to leave! I just looked at my sister with tears in my eyes and she said, "it's ok, it doesn't matter, it's ok, you're going to be ok!!" I believed her and nodded my head and just looked at my precious bundle feeling confused and unsure of what this all meant.

I immediately called Devon. It was 1am in Chicago and as far as he was concerned everything was fine. The baby was here, he was healthy, I was fine, and he could relax knowing we were all fine! I told him they thought the baby might have Down Syndrome and that was it...I couldn't speak much more than that...it was hard enough saying those two words. He had a million questions, but I didn't have any answers and we hung up the phone.

Soon after, our brother-in-law, Curtis, and Devon's dad arrived to give both me and Jack a blessing. I don't remember much of what was said, but the feeling of that room was crowded. I do believe in guardian angels and I know they were watching over us that night. I still felt uneasy, but, at the same time, felt peace.

I was finally escorted to my recovery room. Robyn and I "tried" to sleep, but how could we sleep? I think we both closed our eyes, but our brains were on overdrive! We awoke before 6am and were sobbing. She was crying and I was crying and we couldn't stop...we needed answers, we needed sleep, I needed my husband, and we all needed to know Baby Jack was going to be ok.

The hours and days that followed all seem like a big blur! We still hadn't received an official diagnosis, but as far as we were concerned it didn't matter and we felt he was sent he was sent to the right family. Taylor, Luke, and Blake adored their new baby brother and couldn't seem to stop smothering him with kisses and loves.

Devon finally arrived from Chicago and my sister went home. As far as she was concerned, the worst was over...

Jack and I stayed over at the hospital one additional night because his glucose levels were low and his temperature continued to stay low. His poor little hands and feet were still dark purple and the nurses attributed that to his size and poor temperature. The FISH test for the Down Syndrome still hadn't come back and I had received many texts, emails, phone calls and visits from friends, family, and nurses assuring me that "everything was going to be ok". I even had one nurse go out of her way to explain to me about "A Trip to Holland." It's about planning a trip to Holland, but instead of landing in Holland you've landed in Italy...bla bla bla...

I just wasn't ready to hear any of that or go there...besides, nothing was "official." We were sent home. Everything was fine, other than a huge blood clot on the back of my knee that killed and that Jack still wasn't eating very well. He was very lethargic, hard to get to eat, but, again, I attributed that to him just being a "tired newborn" and thought all would be better once we got home.

The next day, the Pediatrician called with the FISH test results. He said, the test came back positive for Trisomy 21 (Down Syndrome). I couldn't breathe, I couldn't talk, all I could do was hold my sweet, precious baby and cry. He was so beautiful and perfect and yet now I had been told something with my beautiful, perfect little boy was different and life-changing. I wasn't sure how I felt about this news. I was confused, angry, and sad, yet happy and joyful to have this new baby in our home and as a part of our family.

It's hard to explain the feelings I experienced during this time. The best way to explain it is that when I was pregnant, I had a "dream", or so to say, about Jack and what he would be like and learning about the Trisomy 21 wasn't a part of that "dream." All of us went through a period of grief...grief for that baby we thought we thought we were having and grief for Jack and the challenges his life would bring for him in the future. But, every time we hold Jack and look at him we are overwhelmed with a great sense of peace and love for this little guy! Although, he won't be "perfect" in the eyes of the world, he is perfect to us and our hearts grow bigger every time we hold him and love on him and that is all that matters!!

The days and weeks that followed is when all the trauma began...
(to be continued...)

Blogging Again?

It is the end of summer. School has started, Devon FINALLY was hired for a job, and I am 6 weeks away from being induced to have this baby.

Summer went by so fast, I didn't even blink! Our summer, this year, was filled with lots of trips to Salt Lake. Devon interviewed for jobs, like crazy, all summer and was officially offered a job 2 weeks ago. We are so excited to transition from student life to normal life once again. He will start his job Sep. 15th in Chicago for 8 weeks of training and then will resume permanently in Salt Lake once his training is finished.

We have decided I will stay here, with the kids, while he finishes his training and move to Salt Lake once he is done. That way the I have his parents to help me with the kids and with the baby. Hopefully, I don't go into labor before my induction day!

Taylor and Luke are ecstatic to be back in school. It's hard to believe they are both gone all day now. Luke started 1st grade and Taylor is in 3rd. Luke is totally exhausted when he gets home, but loves art and PE and all that good stuff. He just wishes he didn't have to ride the bus home and that I would pick him up every day. Taylor is a happy 3rd grader and knows a lot of kids in her class this year, which helps! She happily watches over Luke at school. She is a little mother hen when it comes to taking care of her brothers and does this regardless of us asking her to.

Here I am, 8 months pregnant, packing up as much as I can before this baby arrives and still teaching Zumba 7 times a week. Zumba is my sanity and I love it! It is the most fun class to teach and the best way (in my opinion) to workout.

We were able to spend the weekend with my family 2 weeks ago. It's amazing how fast our family is growing and it is becoming more rare to have us all in one place at the same time. I love my family and love it when we can be together!

My blogging may be far and a few, but just know that I think of all my little blogging friends and family all of the time and love you all!

Our Newest Addition...

As a young girl, growing up, I always imagined myself being the mother of little girls. Little girls who loved to dance and sing just like me. I never imagined what life would be like having light sabers, legos, and hot wheels around the house. Both have been a joy and I feel been extremely blessed to have a daughter and two sons. After having two boys, I was ready to have another girl....however, Heavenly Father has a different plan for me.

We found out today we are having a BOY! Now I really need to study up on sports and all of the rules that go along with them. One girl and three boys...wow! He's gonna be a heart throb!

Taylor's Baptism

It's hard to believe this little girl is 8! Taylor had been anxiously awaiting her baptism and the arrival of family who would be coming to celebrate with her. It was such a joyous day! She absolutely sparkled. It has been amazing watching her grow, watching her testimony develop, and her love for the Gospel gradually become stronger. We just absolutely love and adore this girl and we are so proud of her and the choices she has made this far in her life.
Pre-baptism pictures...
Luke and Blake couldn't resist checking out the font and ended up getting their pants wet while attempting to swim in the water.
It was so nice having Nanu and Grandpa here...it made the day extra special!
Taylor with both of her Grandpa's
Taylor with both of her Grandma's
All of the men...
All of our family...
The "after" party...Parker and Blake are ready to dive in and open the presents themselves!
A special cake for a special girl!
Oh yeah, Luke lost his first tooth...UNBELIEVABLE...how cute is he?!

Graduation

On, Thursday, Devon's last day of finals, I had spent the entire day rushing around cleaning the house, making beds, folding laundry, etc, etc in preparation for my parents and sister who would be arriving later that night.

The previous week I had spent laid up with the stomach flu and had been in the hospital being pumped with fluids. Needless to say, the house really needed a good cleaning!

When Devon arrived home Thursday afternoon, I was really crabby! I'd been cleaning all day and couldn't get the kids to cooperate and help me out which leaded to more frustration and crabbiness. He had been looking forward to a slightly more upbeat "welcome home, Honey, and congratulations on finishing school."

Needless to say, since I had shown rarely any elated emotion on Thursday, I felt like a complete basket case on Friday! We arrived at the Centrum to await the graduates and I couldn't hold my tears back.

All of a sudden, I couldn't believe we had made it to this point! Two years ago, we were in the process of selling our home in San Diego unsure of what the future would hold and now we were there.

I became even more emotional as I thought about how hard Devon has worked to finish school in a short amount of time. I thought about how much I have worked and worked and worked to earn money to provide for our family so he could focus on school and now he was done! A huge weight had been lifted!
We had such a great time celebrating with both of our families. My sister, Robyn, and my mom and dad came to celebrate with us as well as Devons parents (obviously, since we live with them...ha ha).
This has been an amazing journey! The support from our families has been unbelievable! Devons parents have helped us with our business, taking care of the kids, helping with school projects...it has been a group effort and we could not have done it without them! Thank you to all the family who came and has also encouraged us along the way...we love you all!

He Did It...It's Over!

This weekend was the beginning of a new chapter in our lives. Devon completed a two-year goal of finishing 3 years of college in 2 years...we are so proud of him! We feel so blessed and extremely relieved to have this chapter in our lives close. It was a crazy weekend filled with lots of fun, laughter, and tears....more pictures to follow soon!