2nd Times a Charm!

Blake, Luke, and Jack at PCMC

The days and weeks passed very slowly! Luckily, my brilliant husband convinced my father-in-law to buy me a Blu-Ray DVD player so I could access our Netflix account while at the hospital. Within 6 weeks time, I watched all 5 seasons of "Say Yes to the Dress," 2 Seasons of "Prison Break," "Laguna Beach," and the first season of "The Hills."

Every nurse on the floor knew my name and was accustomed to seeing me in my sweats, pony tail, and no-make up in the morning. The sleeping arrangements were not the best, but at least I was allowed to sleep in Jack's room. I slept on a large chair that pulled out into a bed. The bed was horrible, but I slept better in that large chair bed than I did in my own. Every time I slept at home, I tossed and turned all night as I worried about Jack and wondered if he was ok. It was just better for my own mental health if I stayed and slept at the hospital.

The nurses were so sweet and adored Jack! They kept me company, made me laugh from time to time, hugged me when I needed to cry, and became my best friends! In the hospital, vitals are checked every 4 hours. At midnight, the nurse would come in to do Jack's vitals and she would stay and visit with me and then, again, at 4am. The nights were long and sleepless, but at least the company was good.

Every morning, at 4am, the nurse would come in to do vitals and also draw blood for Jack's labs. The one good thing about Jack's PICC line was that they no longer had to poke him to draw blood. Rather, they drew blood from the PICC line. Occasionally, the PICC line was "fussy" and wouldn't draw and they would have to call the I.V team to come and draw labs. When this happened, Jack would have to endure another poke and it was painful and sad for me to watch. I remember, on one particular morning, the PICC line was being "fussy" and the nurse was frustrated with it and didn't want to call I.V team. As I sat in the rocking chair, next to Jack's crib, watching and listening as they attempted to draw blood...I began to pray. I was having a miserable week and I was feeling alone, doubtful of any progress, and a little bit angry with God wondering why He hadn't healed Jack yet and frustrated that it was taking so long! I sat there, needed God to hear my prayer, know that He was listening, and needed to feel His love. As I began to pray, in my head, I asked that the PICC line would work and pleaded that Jack would not need to endure another poke. Instantly, before I even opened my eyes, I heard the nurse excitedly shout..."oh, oh, here it comes it's working!" At that moment, I felt a million pricklies tingle all over my body and knew my prayer had been answered! It was just what I needed...a simple reminder to know that He was there, He heard my prayer, and He was listening! The funny thing was, the nurses, at the time, were holding Jack almost upside-down and thought it was the position they were holding him in that allowed the blood to draw. The nurse even commented that they needed to make sure and chart how they had positioned him so the next nurse would know what to do. I just smiled and knew that wasn't the reason!

A few days later, Jack began running a very high fever. Evidently, children under 3 months of age are automatically admitted into the ER if they have a fever and Jack was running a fever of 101. I could tell that the nurse was nervous, but she was doing her best to assure me that there wasn't anything to worry about. As the day continued, the fever became worse. Again, Jack's oxygen levels decreased, his heart rate dropped, and the worry continued. By mid afternoon, multiple labs had been drawn and tests had been run to determine what was causing the fever. By the end of the day, Jack was really struggling to breathe and looked horrible. The doctor decided it would be best if we removed the PICC line. Sometimes these lines can cause a blood infection and they were concerned about that and removed the PICC. Sure enough, the PICC was the cause of the infection, they started him on antibiotics, and his fever dropped, and his breathing and heart rate went back to normal.

He was still unable to be fed by mouth and the doctor was concerned about his nutrition and was contemplating putting in a Broviac rather than a PICC. They both do the same thing, however, a Broviac is inserted directly into the chest and requires surgery to place. I was anti-broviac, but knew I didn't have a choice. Luckily, the team decided it would be best to re-insert another PICC line. I wasn't happy about that either and was worried about the pain of re-inserting that, but knew it was our only option to ensure that Jack was receiving nutrition.

I was still alone, no husband, no children, occasional visitors. I couldn't bear to watch them insert the PICC and sat outside the room, listened to Jack scream and cry and as I sat there and cried the nurse put her arm around my shoulder and fed me chocolate.

It was now 3 weeks post surgery (a total of 4 1/2 weeks in the hospital) and the doctor arrived to tell me that they were pulling Jack's Anderson Tube and we were going to attempt feeding him. He went on to tell me that sometimes these duodenal atresia's don't do what we want them to, and, although, his body hadn't given us any sign to pull the tube...we were pulling it anyway and hoping his body would handle the fluid on its own.

We began to feed Jack. I was ecstatic! I had been pumping for weeks and was thrilled to finally see all that milk being used. We started out very slow...only 1 teaspoon every 2 hours. He seemed to like it and did well throughout most of the day. Later on that evening, Jack started to vomit. At first, the nurse and doctor weren't concerned. This was expected and normal...especially when the stomach has been emptied and has had nothing in it for weeks. However, by the end of the next day, the vomiting had worsened. So much so that the nurse wouldn't allow me to feed him anymore until the doctor arrived. I remember telling the nurse that this reminded me of how it had been at home and I was concerned.

The following morning, the surgical nurse practitioner arrived to tell me that they were re-inserting the Anderson, stopping the feeds, and that the surgeon was ordering an upper GI in a couple of days. I remember looking at the nurse trying to keep a brave face, and, in my head, trying to tell myself not to cry, but the longer she stood there and spoke to me the tears began to swell up in my eyes and I couldn't hold it in any longer. I politely asked her to leave and told her "I was having a moment." She understood, closed the door and left.

I was devastated! All of these weeks and nothing seemed to be going right. I had to remind myself that it was a miracle that Jack was still alive and also reminded myself of all the little tiny miracles along the way that I needed to be grateful for. But, somehow, reminding myself of those little tiny miracles didn't seem to make things better and I was mad as hell!

I couldn't stop crying! I cried all. day. long! Every time the nurse entered the room she asked me if I was ok and I just nodded my head "no" and continued to cry. The funny thing about PCMC is that when a parent is not "ok" word spreads and before you know it everyone is knocking at your door to check on you and talk with you. The Social Worker paid me a visit--didn't help, the Child Life Specialists paid me a visit--I told them I didn't want to talk to them, so they left and then I felt bad for being so rude! The surgical nurse practitioner arrived, sat down, looked me in the eye and told me how brave she thought I was and how glad she was that I was Jack's mom. She hugged me and cried with me as I told her about all my worries and fears. Then, she told me what I needed to hear--Jack was going to live and he was going to be ok. Later that afternoon, the surgeon arrived, sat down, looked at me and said: "I've been waiting for this to happen." I said, "waiting for me to cry?" And, he said "Yes." I told him I cry all the time, usually, I just wait to cry after everyone leaves the room. He told me to let him do the worrying and that Jack was going to be fine. I cried and cried and cried all day...even into the next day. My eyes were so puffy I could hardly see and I requested that the nurse put a "do not disturb" sign outside my door. I wasn't in the mood for unexpected guests.

The next day, we took Jack down to the Radiology Department, once again, to have another Upper GI. The Radiologist couldn't see an opening and sent us back up to our room. Seconds later, the Surgeon arrived to tell me that he couldn't explain what had happened, but that there was another blockage and Jack needed surgery. In all 25 years of his career, he had never re-operated on a patient and was shocked and puzzled as to what had happened. The nurses quickly prepared Jack for surgery. I made a quick phone call to Devon, my parents, and my sister. I needed someone to sit with me. We rolled Jack down to the 2nd floor, I said my goodbyes, again, and walked to the waiting room by myself, sat down and waited for the surgery to be over. My sister made arrangements for her kids so she could be with me and we sat there and waited together.

Three and a half hours later, the surgery was over...phew! Our miracle Surgeon arrived to go over the procedure with me and told me that he wanted me to know that he prayed before operating on Jack and knew everything went well this time. He went on to explain that, somehow, the main artery that lays somewhere near the intestines had put pressure onto the area where he had previously operated and sealed it back up. Also, there was a second blockage that had gone unseen and needed to be opened. He assured me that Jack was "really open" and things should start flowing through normally and quicker this time.

I was so tired and so happy the surgery was over. This time around was much better! Jack did much better with the anesthetia, pain, breathing, and narcotics. Overall, it was a much better experience and now all we needed was for him to recover, start eating, and go home...

The First Surgery

The first 10 days consisted of a lot of emotional ups and downs. As if I hadn't already been on an emotional roller coaster, but this was different. Not only was I dealing with the news of having a child born with Down Syndrome and feeling unsure about what all that meant for his future, I was worried, concerned, and angry with the pediatrician for being such a dumb ass and not erring on the side of caution.

Even though I was angry, I also felt peace. It was so weird, but comforting at the same time.

I remember one day walking back into Jack's room to find a strange woman sitting and chatting with my mom. She politely introduced herself as "the social worker." Immediately, I thought: "oh, great...she's here to judge me as a mom and to see if I am equipped to be his mother." I soon found that she was only there to listen. She was there to make sure I was "dealing" with everything "ok" and to make sure I was "emotionally sound."

Something about this woman really irritated me! As I sat in the rocking chair, next to Jack's crib, she sat across from me and began asking me questions like, "How are you dealing with everything?" I thought, what kind of question is that? How do you think I'm dealing with everything? She went on to ask, "What is the diagnosis so far?", "Would you like to meet other families with a child with DS?"I told her I wasn't ready to meet any families yet, but thanked her, wanted her to hurry and get on her way. Then she asked, "Can I print up any material or bring any books for you to read?" I told her that was fine, but knew I wasn't ready to read anything yet. I was still absorbing all of this "newness" in my head. He had already stolen my heart, but my head was still having a hard time coping and dealing with the news.

The questions just went on and on. I was polite. I even cried a little for her so I didn't seem unattached from the situation. I really felt like I had to put on a "good" show for her. It was awful! Her visiting hadn't helped one bit! My mom returned, hopeful, that I had received a "good" counseling session and I looked at her, rolled my eyes, and told her I thought that woman was annoying and thought she would never leave!!

Not all of our visits were bad. I found so much comfort in having visitors. It was unbelievable how many visitors I had! One day, Jacks nurse commented on all of the visitors....she said, "wow, there sure is a lot of love in this room...you can feel it!" She was right. The love from our visitors combined with the love that little Jack radiated made that room very special and you couldn't help but want to feel and be a part of it. I had visits from my sister (almost on a daily basis), parents, in-laws, grandparents, my aunts, and uncles, several cousins, old friends from San Diego, childhood friends from Utah, and the list goes on.

I learned so much from each of these visitors. I learned about Geneology from my Uncle Bill, I learned what kind of books and food my grandparents enjoyed, I enjoyed visiting and catching up with old friends...it was amazing! Each would come, want to hear our story, hold Jack, and cry with me. There is something to be told about someone who is willing to carry your burden with you and cry with you. I found so much comfort and joy in each and every one of those visits.

The first 10 days passed quickly. The day of surgery had finally arrived! The nurse prepped Jack for surgery and she and I rolled his bed down to the 2nd floor for his surgery. The anesthesiologist discussed with me, one more time, the process and then they asked me to say goodbye and rolled him away for surgery. My entire walk to the waiting room was tearful. I couldn't imagine such a tiny baby having such a big surgery. But, I was extremely confident in our surgeon and knew he was in good hands.

As I sat in the waiting room, I watched other parents waiting and wondered what their child was having surgery for. I was tired, but I couldn't sleep. I was hungry, but I couldn't eat. All I could do was sit there and wait. The first hour passed and the O.R. called me to give me the first update...everything was good. The second hour passed and I received another call to let me know Jack was doing good. Then, another hour and a half passed and I received the final call to inform me that surgery was complete and they were moving Jack to recovery.

Soon after that call, the surgeon came into the waiting room to visit with me and let me know how Jack's surgery went. He drew a picture of Jack's stomach, duodenum, intestines, etc. He explained that Jack also had a malrotation that needed to be fixed. Meaning, his bowels were twisted and need un-twisting. Fixing the malrotation put Jack's appendix on the opposite side of his body, so in order to avoid any future confusion he removed his appendix. He also re-connected his intestines to the lower part of the stomach and made the opening larger so "things could start moving through." All in all, the Duodenal Atresia, Malrotation, and Appendectomy had all been fixed. He was very optimistic and assured me that we were now on to the road to recovery.

I was called back to the recovery room to see Jack. He was pale and totally out of it. The nurse told me he had slightly "woken" up so they would be sending us back to our room. We gently rolled Jacks bed back up to the fourth floor and waited, and waited, and waited for him to wake up. All day, he was completely out of it! He didn't move, he didn't open his eyes, and he was so pale. The anesthesiologist had prescribed some morphine to help with the pain and around 4pm the nurse debated whether or not to administer it, but decided to start his morphine drip.

All day long, the nurses kept saying..."oh, he's just really comfy!" About 3 hours after the morphine drip, Jack's heart rate started to, occasionally, drop and his rate of breathing would take large plunges as well. One nurse commented on the fact that some kids end up going to the PICU shortly after surgery and was hopeful that Jack wouldn't be one of them.

It had been another long day. Another day of forgetting to pump and I was extremely engorged, again, and the nurse encouraged me to go pump. So I did. As I returned, there was panicked nurses and chaos exiting Jack's room. I rushed in to find several nurses from our floor circled around Jack's crib. They began to inform me that Jack had stopped breathing, turned blue, and seconds before pressing the "CODE" button, they revived him. Another miracle, yet again, proving Jack's strength and will to live.

He'd had a poor reaction to the morphine and they injected a special medicine that reversed the effects of it and he immediately began to wake up and cry. It was a miracle!

Post surgery, the Doctors continued to decompress his stomach of the bile and expected it would eventually decrease and become clear. It was still icky yellowish-green and they assured me it would do what they had promised. The days and weeks passed and nothing was happening. The doctors assured me it would and that I needed to be patient and wait. The waiting was the hard part! All I wanted was to take my baby home, be reunited with my husband and kids, and be a family again...

It's Not Pyloric Stenosis!

Jack and I arrived at Primary Children's Hospital October 18, 2010 via Ambulance. By this time, Jack weighed 4lbs 90z (remember, he was 5lbs 13 oz when he was born). As we entered the E.R, the nurse began taking Jack's vitals and checking and double checking everything that was done at the hospital in Cedar City. The first thing she noticed was Jack's color. She took one look at Jack, gently rubbed the top of his head to feel his fontanel (which was sunken) and said, "this baby is SEVERELY dehydrated!" As she continued her evaluation, she came upon Jack's IV and was dumbfounded as to why they had placed it in his arm. She explained that that is a horrible place for an IV in a baby and removed it and placed a new one in his foot.

As the nurse left the room to get more supplies, the E.R. Doctor walked in and explained to me that they were in the process of receiving all of Jack's records from Cedar City. As she was explaining this, she checked the computer to see if they had arrived and gasped! She immediately began thinking aloud saying..."why did they do this?....why did they do that?...well, we're going to have to reverse the antibiotic they gave him...why did they give him that particular antibiotic...you never give that to a baby!" She went on to continue that Jack did not have a bladder infection, but that he was severely dehydrated and explained that the Surgical Nurse Practitioner would be arriving shortly to explain Jack's situation. She ordered more tests and looked me in the eye and assured me that they were going to do everything in their power to save little Jack!

Being in the E.R. at Primary's was so comforting. Everyone was so competent! No one was making fun of the situation or behaving rudely or incompetently...it was amazing! It was such a relief to be there and I knew we were in good hands.

The nurse came back into the room and told me we needed to insert an Anderson Ng Tube down Jack's nose to begin decompressing his stomach. An Anderson Ng Tube is a tube that is inserted through the nose down to the stomach and is designed to continuously empty the contents of the stomach. Soon after, the Surgical Nurse Practitioner arrived to speak with me. She politely introduced herself, sat down, and explained that Jack did not have Pyloric Stenosis. Rather, a very common normality in Down Syndrome children called Duodenal Atresia. Duodenal Atresia is an intestinal blockage that needs to be repaired through surgery. She was very nice and went on to explain that this is a very common surgery and that there was no need to worry because Jack was in good hands.

At this point, Jack had an NG Tube in his nose as well as oxygen and an IV in his foot to repair his electrolyte levels and get him hydrated. It was horrible to see Jack with all of these tubes, but somehow I knew we were finally where Jack needed to be and I found much comfort in that.

They walked us up to the 4th floor of the hospital...room 4320. Little did I know that room would become our home for the next 44 days.

I hadn't showered in almost 48 hours and I was extremely engorged from not nursing or pumping and exhausted from all of the stress and fatigue. The nurse showed me the shower room, gave me some towels, and showed me where I could go to pump and where to put the breast milk when finished. It had been a long day and I was tired!!

The next morning, the Residents, Nurse Practitioners, and Medical Students arrived to do their evaluation. This became a usual morning ritual. I would be awoken every morning by this team and they were always eager to answer any questions I would have. That morning, they explained that the Surgeon would be in later that afternoon to speak with me about Jack and explain his surgery.

I awaited the Surgeons arrival all day. He finally walked into our room that afternoon, introduced himself and said: "First, I want you to tell me what you've been told and then I will explain to you what is going on..."

I explained everything about the vomiting, the weight loss, the so-called reflux, the visit to the E.R. in Cedar City, and the Pyloric Stenosis diagnosis.

After all of my explaining, he looked me in the eye and said..."It's not Pyloric Stenosis...it's Duodenal Atresia. I spoke with your Pediatrician yesterday and he explained to me that he was sending a Down Syndrome baby with Pyloric Stenosis that needed to be operated on. I said to your Pediatrician that that is IMPOSSIBLE!! There are three major things you look for in Down Syndrome children and THIS IS TEXTBOOK! He doesn't have Pyloric Stenosis, he has Duodenal Atresia."

He went on to explain to me that Jack's small intestines were not even connected to the lower part of his stomach (the duodenum) and Jack had gone without nutrition for 2 weeks. He had been starving for 2 weeks! This is why Jack was vomiting...nothing could move through andthat is why they placed the Ng tube down his nose. They needed to keep it there to continuously pump the bile from his stomach until after his surgery. He continued to explain that Jack's Electrolyte levels were the 2nd worst they had ever seen come through the E.R. He told me that when the "dust settles" I needed to phone my Pediatrician and schedule a meeting with him to make sure he knew what he had done. And then he said, "of course, there are people who would be willing to take your money and would do that for you!"

I stood there, next to Jack's crib, looked at the Surgeon, looked at Jack with all of his tubes and couldn't believe what he was telling me. I knew something was severely wrong! All of those days I spent trying to get Jack to eat, trying to keep him from vomiting, calling the Pediatrician worried and sick about all of his weight loss and inability to keep any food down and the Pediatrician kept reassuring me that it was nothing...just reflux! I was so angry!!! How could a Pediatrician, E.R. Doctor, E.R. nurse not recognize that Jack was dehydrated...severely dehydrated?! Shame on my Doctor!!! I hadn't gone to school all of those years and wasn't professionally trained to know these symptoms. How was it he could look me in the eye and tell me that "he was trained to know what to look for and know what to do with Down Syndrome children." How could he even call himself a Doctor? I was outraged!!!

Then, the surgeon told me that usually babies born with Down Syndrome are immediately sent to the NICU. Even if the diagnosis isn't positive, they are sent to the NICU where they begin testing for thyroid, heart problems, intestinal problems, etc. He said these babies are usually operated on within the first 2-3 days of life because of the fatal consequences if not treated!

What were the nurses and Doctors thinking in Cedar City? They were clueless! The amniotic fluid that had been pumped from Jack's stomach, when he was born, was the first sign of the Duodenal Atresia! I couldn't believe they sent me home!

Because Jack was so severely dehydrated, the Surgeon would not operate on Jack until he was hydrated and "well." Getting him well would require a Central Line (PICC Line) to be placed through his arm. Through this line he would be fed TPN (total parent nutrition) and Lipids. On top of this, he would continue to be given his electrolytes to bring up his sodium and potassium levels. Once Jack was "well" he would operate.

I asked him what kind of plans I should make for my other children in Cedar City, which was 4 hours south of Primary Childrens Hospital. I explained that my husband was in Chicago for 6 more weeks and my other three children were in Cedar City. I wanted to know how long I should expect to be there and he explained that Jack would probably be there for a minimum of 6 weeks.

He asked if I had any other questions, I didn't. I needed to call Devon and explain Jack's situation and I needed another good cry!

He left. I looked at my mom. Looked at Jack. Began to cry and under my breath said, "Dumb Ass Doctor."

10 days later, Jack was escorted down to the 2nd floor for what would be the first of two surgeries...

E.R. at Valley View Medical Center

The first picture was taken the night Jack and I arrived at the E.R. in Cedar City, the second picture was taken the day after he was born. You can see the significant difference in his appearance and color!

We arrived at the E.R. at Valley View Medical Center October 17th. Once admitted, the nurse came in to do his evaluation and told us that before working in the E.R. he had been working at the NICU in St. George. Obviously, with NICU experience, we expected extra special care and knowledge on Jack's behalf. The nurse took one look at Jack and told us that his "appearance" did not show any signs of dehydration, but that he would follow protocol and check his urine, blood, etc. They drew some urine and told us that his urine was cloudy, showing that he "possibly" was dehydrated and that he "probably" had a bladder infection.

I wondered how a newborn could get a bladder infection...hmmm???

The E.R. Doctor came into our room to do his evaluation. As he entered the room, I had just finished feeding Jack a bottle and about two minutes later Jack started to profusely vomit! As he was vomiting, the Doctor said:

"Oh, way to go Dude, Awesome, way to go, nice job!"

He said those words in a way that made me cringe. I looked at him with angry eyes and thought to myself..."this isn't cool...this has been going on for weeks..."

There was so much vomit on the floor that he had to grab a large towel to soak it up. On his way out the door, he told us there was nothing to be concerned about. Babies "spit up" all the time and "worst case scenario" we would have to feed him a teaspoon, every 20 minutes, at a time until he could eventually handle more. Then, he left.

While he was gone, the nurse returned to place an IV in Jack's arm because he "didn't look dehydrated," but "his urine was showing he was dehydrated" so they were going to give him some fluids "only as a precaution." The nurse began to insert the IV in the front of Jack's elbow. I thought that was a horrible place to insert an IV in a baby since babies are constantly pulling their fists into their face. But, again, what did I know??

The Doctor returned and said, "Well, the good news is...Jack isn't having a stroke because there's some things that we're REALLY bad at here...like strokes...so the good news is it isn't a stroke! He does, however, look like he has a bladder infection and we're REALLY good at treating bladder infections!!"

I asked what the symptoms were for a bladder infection. He explained that bladder infections can make you feel nauseous and vomit. He told me once we got the bladder infection under control that Jack would feel better and stop vomiting. So, in addition to the IV fluids they were starting him on an antibiotic for the "bladder infection."

As he left, the Pediatrician entered the room..."Yep, he doesn't look dehydrated, but we'll go ahead and keep him overnight and observe him and add some human milk fortifier to the breastmilk to help him gain weight." He continued on and on and on...Every word that came out of his mouth was calm, comforting, and led me to think there was nothing to worry about and that Jack would be fine. The fact that he was so calm made me think I should be more calm. If the Doctor is not worried, then why am I so worried??? Then, he started to talk about "the fact" that some DS children have Pyloric Stenosis. Pyloric Stenosis is a narrowing of the Pylorus, the opening of the small intestines into the stomach. He went on to explain that this usually doesn't occur until children are 3 months of age, but, "as a precaution" he would order an Upper GI for Jack in the morning. Before leaving, he assured me that Jack was "fine" and everything was going to be "ok" and I believed him!

With the clothes on my back, my diaper bag, and phone...Jack and I spent the night at the hospital. That night, Jack's oxygen levels dropped down to 70%! Since he was having trouble breathing, the nurse decided it would be best to put him on oxygen. The nurse was concerned and asked me if anyone had spoken to me about seeing a specialist? I thought "specialist?" and answered "no." Jack continued to eat a tiny bit and vomit more than he had eaten all night.

Morning arrived and Jack and I were led down to the Radiology Department for his scheduled Upper GI. I had to undress him and feed him a bottle filled with contrast (a white substance) so the Doctor could view the fluid in the X-Ray and see where it was going. As I was doing this, Jack began to vomit and the nurse assisting was astounded that the color was icky dark green. The Radiologist, however, viewed the screen and concurred..."Yep, it's DEFINITELY Pyloric Stenosis."

Jack and I were led back to our room. Approximately ten minutes later, a man entered the room introducing himself as the "transport guy." He said Jack needed to be transported up to Primary Children's Hospital in Salt Lake City to undergo a "simple" surgery for "Pyloric Stenosis." He asked me how soon I could leave and I told him we could leave as soon as they were ready.

I called my mom, in tears, and told her we were being transported, by ambulance, up to Primary Children's and I needed her to pack me a small bag.

In the meantime, the Pediatrician called and asked me if I felt I could transport Jack myself or if I would prefer him being taken in an ambulance. I couldn't believe he thought Jack would be ok driving in the car with me when it was obvious he needed a Nurses care...what was he thinking??? I told him I would prefer the ambulance and he agreed.

My mom arrived with our small bag of "things." After all, we were only expected to be gone for a couple of days. I gave her a teary hug goodbye and she told me she would follow me shortly and meet me up at Primary's.

The ambulance ride was anti-climatic! The driver was boring, but I didn't care...I was just glad I didn't have to talk to her. Occasionally, the nurse from the back would announce updates for me and let me know Jack was doing ok. About 30 minutes before our arrival at Primary's , Carrie Underwood's new song "Temporary Home" came on the radio...I listened to the words...

"this is my temporary home, not where I belong, windows and rooms that I'm passing through...this is just a stop on the place to where I'm going...I'm not afraid because I know...this is my temporary home."

I listened to those words, thought about Jack and tried to hold back my tears. After all, I needed to be strong for Jack...not sad...and, I needed the driver to think I was brave too!!

Our uneventful ride finally came to an end...the front entrance of Primary Children's Hospital. The Nurse and EMT gently removed Jack from the back of the ambulance and I followed them into the E.R.

My sister Robyn was there, with open arms awaiting our arrival...

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...)