Today is a Gift

For the first time in three months, Jude and I spent a week at home together. He is finishing up his antibiotic from getting sick two weeks ago, but no doctor or hospital visits. Just Jude and I. We spent most of our time kissing each other's cheeks, laughing and smiling, slow dancing to our favorite songs, snuggling up while napping together, and talking about the birds while taking walks outside.  It was so refreshing. I was able to really see how much he has improved with his motor skills and most importantly enjoy every minute with him. Next week is filled with doctors appointments and testing, but I am so glad I had this week to just be with my sweet Jude.

Smile :)

        

      Jude started the week with a cold.  In the middle of the night, he woke his dad and I up with crying and gasping for air because he was so congested and coughing.  After many attempts to help him and no improvement, we decided to take him to the emergency room.  At the emergency room, we were reassured it had not developed into anything more.  The rest of Jude's week was filled with coughing, congestion, and being uncomfortable.  No matter how many different cold fighting methods I used, he could not seem to get rid of the symptoms.  Later in the week, we had two visits to the pediatricians office because the doctor wanted to check-up on Jude and make sure the cold did not develop into something more. At the last visit, he was weighed and he lost 4 ounces. Due to his failure to thrive, the doctor decided it was time for Jude to go to a feeding clinic. Later that week, we received a call from the specialist office letting us know that Jude would have an overnight visit to the hospital for a bronchoscopy and MRI on June 28th.   Even though this news was overwhelming, I am hoping the feeding clinic and testing will give us more insight into his upper respiratory(breathing) and feeding issues. 

      Weeks like this are not the easiest but at any moment I reminded of how blessed I am when he smiles.  When we were heading to the emergency room, I sat in the back with tears in my eyes and praying he had not caught pneumonia again. We came to a red-light and the light from above was shining into the car. I could see Jude's face clearly.  His eyes locked with mine and he smiled so big. The anxiety fell from my shoulders and I smiled back. Somehow he always knows just what to do.

        

The Spiral Effect

    Last week, the doctors decided Jude would definitely have a bronchoscopy and MRI. He will have to be put under anesthesia for the procedures and spend the night in the hospital for observation. We were suppose to hear from the doctor's office by Friday, but of course we did not.  I called and they told me to call back Monday.  Sometimes I wonder if they know the amount of anxiety they put on patients/parents when they tell them to wait an entire weekend to know the outcome or results???? The waiting game has been hard to deal with.  It seems some days are wonderful and other days are filled with the anxiety and wonder of Jude's future.

    Last night, my husband and I made plans to meet with our good friends.  They have an autistic son and I knew they would have some great insight...especially after I was feeling frustrated Friday.  After explaining Jude's story, she gave me a great piece of advice. Most things that are hard come to end.  This will not. You will have great days and even great months, but then you will come back down and have really bad days and months. It's like a spiral.  She was right! The testing, hospital stays, doctor visits, and all the other difficult situations that may arise throughout his life will try to pull me down...BUT the progress he makes will be amazing and that SMILE will keep me on the upside of the spiral! 

Jude's Story

     On December 23, 2012 I gave birth to Jude Thomas.  He came into my world and it has been a blessing everyday.  The minute he was born I could not let him go. I was so in love with that 6 pound 8 ounces of pure sweetness.
     On Christmas morning, we got to bring our little man home. Usually, this is the part where parents complain about not sleeping. Not Jude, he gave his daddy and I sleep from the start. In fact, he slept so much I could not get him to eat.  I was so relieved the morning we headed to the pediatrician's office for the first visit.  Sure enough he was not eating enough and dropped to 5 pounds 11 ounces.  It took two weeks of lactation consultants, support groups, doctor visits, and no weight gain to realize he was not going to breastfeed.  In his best interest, I started giving him a bottle and pumping 8 times a day. He finally reached his birth weight at a month.  For the next month, he gained an ounce a day.
     Everything was going well with his weight, but every time I watched my sweet baby sleep I became concerned by some of the features on his face. In the hospital, they had mentioned he had a single transverse palmer crease on both his hands.  At the time, they did not think anything of it. Considering all of these concerns, I started searching on the internet for some answers. I could not find anything that fit Jude so I decided to just keeping observing him.
     On March 10th, Jude had a fever and became sick with bronchiolitis.  Due to the fact that he was less than three months, we had to have a chest x-ray and blood drawn. It was awful watching him in so much pain and I was not able to do anything. Later that day, we were sent home with an antibiotic. After a week, he was back to eating and being as sweet as can be.
     Later that month, I noticed Jude was not holding his head up.  In fact, his head would not even bob.  Every time I did a sit up with him his head fell forward or back. At a follow up appointment, I brought it to the attention of my pediatrician. She agreed and diagnosed him with hypotonia (low muscle tone) and he went through the evaluation process so he could start therapy. Jude spent a lot of time doing tummy time and other therapy.  He always works so hard and even when he gets tired he keeps trying. It amazing to see how much effort a baby puts forth. Along with therapy, we were sent to neurology because hypotonia is a condition therefore we had to find the cause.
     On April 26, we met with neurology. All the features I questioned turned out to be a true concern. The neurologist informed us that Jude had dysmorphic features and when coupled with hypotonia that usually means a chromosomal disorder. Blood work was ordered and we were told we would have to wait 10 days before we would hear the results.  It felt like someone punched me in the stomach. I knew something was wrong and I could not bear the thought of waiting ten days to know what his life might entail.
     That weekend Jude became sick again.  He seemed to improve but after a few days his cough became so bad he was not able to sleep.  I took him to the pediatrician's office.  The nurse checked his oxygen level and it was in the 80's and dropping.  What seemed like 10 seconds, doctors and nurses rushed in to give him O2 treatments, ambulance was called, and I sat there holding him in shock. We rode in an ambulance to the hospital. He was admitted to the hospital for pneumonia and we stayed there 5 days. The days were filled with doctors, specialist, nurses, and watching Jude hooked up to machines. Many days I sat there wondering why all this was going on, but like usual Jude would see me and smile.  He ALWAYS smiles. He was so brave and happy even when he was in pain.
     Four days after leaving the hospital, Jude was ordered to have a swallow study which found that he was aspirating and we were ordered to thicken his formula.
     On May 9th, we met with the neurologist who informed us that Jude had 15q24 microdeletion syndrome.  Of course, I had no idea what that meant and we had two weeks till we met with genetics so I began researching. I found that there are only 33 reported cases and not every case has the same concerns/delays.  The major concerns are cardiac, breathing difficulties, seizures, intellectual disability, vision, hearing, gross/fine motor delays, and speech delays. This was more than overwhelming. We had 10 appointments in the next month including Jude's appointments for his helmet. This suddenly became my full time job and the Cleveland Clinic started to look like home.
     As of today, May 24th, Jude has had his heart examined and everything looks great! He will have more testing to look at his breathing, etc.  Unfortunately, most of the concerns and delays will not show up until later so it is a waiting game.
     When I surprised my husband with news that we were pregnant or when I held Jude in my arms the day he was born... I never imagined that we would be dealing with a genetic disorder. But who would ever imagine that? It is really hard not to think about what could be and to not get upset.  Every time I start to feel that way, Jude smiles at me and I remember what a precious and perfect gift I have been given.  I am so blessed to be his mother. I do not know what the future holds, but I know one thing for sure Jude is going to do great things!  He is my inspiration so I hope that his journey can inspire others the same way he inspires me everyday...to always work hard and smile no matter how difficult the situation!