Happy Birthday!

 

   Tomorrow Jude will turn one.  It does not seem like a year has passed since I held him in my arms for the first time.  I remember the night he was born, the doctor laid him on my chest and he fell fast asleep.  I had never felt so much love as I did in that moment. I still remember how small and warm his little body felt on my chest. It was the happiest moment in my life.
    After leaving the hospital, everyday brought on a new struggle for Jude. It was not what I had expected and many days it has been hard, but Jude has brought more love in my life than I could of known. He has taught me that I have been blessed enough to be chosen as his mother...someone who will motivate and bring so much joy to life. He has taught me that things can wait...the laundry will still be there tomorrow, but his silly baby giggles will be gone before I know it. He has taught me to not stress about the small things. Most importantly, he has taught me to see all the good in my life. Every single day he makes me a better person. He is my hero, my inspiration, my hope, and my sunshine. The past 365 I have been blessed with an angel. I do not know how I got so lucky but I know the next 365 days I will cherish, honor, and love every moment with him. Happy Birthday Jude! I love you more than you will ever know.
   

Superman

   

    This past fall Jude started doing a lot of new and exciting things. He started sitting on his own and eating baby food. I was over the moon with his progress and felt like crawling was not too far off! Then as the days and weeks progressed, Jude started having trouble keeping his food down. He was struggling to eat any baby food with texture. He would wake up at night screaming and I would find him with vomit everywhere. Finally, I noticed he was not gaining weight and I called his doctors. One of his specialist used her "magic" to get Jude in to see a GI specialist within a few days. 

      The morning of October 30, I was dressing Jude for his GI appointment when I noticed his jeans were loose around his stomach.  At that moment, I knew we were going to be at the Clinic for a while.  During the long and gloomy ride down to the Clinic, I fought back tears as Jude smiled and babbled in his car seat. Thirty minutes into our GI appointment, we were admitted into the hospital for GERD and failure to thrive.  Jude had not grown in length or weight in a month and half. Jude spent days undergoing multiple tests and having a NG tube put in for feeding.  The doctors decided that based off Jude's hypotonia, reflux, and other complications it would be necessary to have a G-tube and Nissen Fundoplication surgery. 

      After 6 days in the hospital, they sent us home with an NG tube and 10 days at home before we would have to return for his surgery.  While we were at home, Jude pulled out his NG tube twice.  The second time we did not have extra supplies and had to go to the emergency room to have it replaced. Unfortunately, it took going to a second emergency room to get the NG tube placed correctly. After watching Jude pull out his tube multiple times, in the hospital and at home, I was finally able to master taping the tube down so he could not pull it out! During the week at home, Jude had an appointment for his Family Plan. It was decided that Jude would benefit from more therapy and ankle/foot braces.  I was able to get Jude in physical, occupational, and speech therapy once a week. He will be fitted for his braces in a week and that will help with his growth and stability. 

      The day before his surgery Jude had a hearing test and appointment with his ENT.  After the hearing test, we learned what I had suspected...Jude did not pass any of the tests/assessments. The ENT also found fluid in his ears which could affect his hearing.  The ENT decided to put ear tubes in during his scheduled surgery and the audiologist would follow with a sedated hearing test to get a more accurate hearing result. 

      The morning of Jude's surgery, he woke us up at 7:30 with his giggles and babbling from the crib. I laid him in his favorite spot, between daddy and mommy. He hugged, kissed, and giggled with us until it was time to get ready and go.  The drive down was long and quiet. Finally, we arrived and we waited for an eternity. When they took Jude to surgery, my stomach turned and my eyes filled up with tears. I hated the thought of not being with him. Throughout the surgery, I received updates and spoke with his doctors. Dr. Siefarth came and told me the G-tube and Nissen were successful. Next, Dr. Anne informed me she was only able to put in one ear tube because the other was too small. Lastly, the sedated hearing test did show he has a low partial hearing loss. After five never ending hours of surgery, I saw my baby in the ICU. He was medicated and swollen. I knew the next few days would be long and painful for Jude. I spent the entire next day rocking Jude in my arms. In the middle of his crying, he lost his IV and it took 5 times before they were able to get an IV in again. At the end of the day, I was feeling extremely guilty for putting him through these surgeries. Everyone reassured me that it had to be done and it would get better. Over the next few days, he slowly started to improve.  He began receiving slow feeds through his G-tube and needed less of the pain medicine.  After five days in the hospital, we were discharged to go home with 9 doctor appointments, a sleep study, and scheduling appointments at the feeding clinic!   

      The past month has been overwhelming, scary, and frustrating.  Jude has a very busy and tiring schedule ahead of him.  Some days it is a battle not to be angry or sad that Jude has so many challenges and I do not have the answer to fix it all for him. As his mother, I am sure that I will search for that answer endlessly. Fortunately, Jude has been blessed with therapist, doctors, nurses, family, and friends that do not stop encouraging, supporting, helping, and loving him.  Even though he has been given so many challenges this past month he still is so happy and improving! I know I will have hard days watching him overcome his challenges but I will always find my strength in his courage and that unbeatable SMILE! 

Fall

Fall has always been my most favorite time of year... scarves, boots, football games, holidays, and pumpkin everything! A year ago, I started my third trimester and I was anxiously awaiting Jude's due date. I remember imagining trips home for the holidays, Jude and I spending our days going to pumpkin patches, and doing all the fall activties I love.  Though we have been able to do some of those activities, most of our days are unlike anything I ever imagined. I never imagined my fall days would be spent with Jude in therapy, planning his next surgery with his doctors/specialists, purchasing special vests and legs braces so he can learn to sit and stand, and trying new medicine to help his ever changing condition. As difficult and unexpected as it has been, some great things have happened. Now Fall will remind me of the first time Jude sat up. It will remind me of those chilly mornings we laid in bed under the covers and he would grab my face and kiss me.  It will remind me of watching the pure joy on Jude's face as he played music in therapy for the first time. These fall memories are far greater than anything I could of ever imagined. Life has become so much more meaningful and exciting with Jude.

Overcoming Fear

 No one can really prepare you for motherhood. It is impossible for anyone to describe what it feels like to have your heart outside of your body. That's what makes it impossible not to worry about your child and fearful of things that could or would happen in their life. When I was pregnant I remember driving to work one day and seeing teenage boys speed down the street and I thought to myself am I ready to deal with this... or even thinking about how his first day of school would go...or just hoping he would have a good life.  It never occurred to me that my fears would be so different. That I would be in fear that he would get really sick, have breathing issues, allergic reactions to basic foods, and so on. I've spent the better half of August trying to stop Jude from getting really sick. Breathing treatments, liquid steroid, humidifiers, Vicks, and you name it... I've tried everything but he still coughs. He is better but those nights he wakes up coughing uncontrollably and cries... I feel helpless. During this "cold", he finally got to try solids. I spent hours buying and making organic food that was the most non allergenic and easily digestible. Even with all my precautions, he still broke out in a rash all over his body. It's times like those that fear starts to overtake me. I start to question what I could do different so he won't be sick or if I should feed him any new food and risk a more severe reaction. But I have to take a deep breath and remember the gift God has given me... Jude.  The happiest, most content, easy going baby boy in the world who always pushes fear aside to overcome every challenge.

Keep your head up!

August has been Amazingggggggg! About a week ago, Jude started holding his head up! We have worked so hard for eight months and he did it! I have to say it is the best feeling to see him achieve his goal. The past few months have been difficult but this proves Jude doesn't let anything get in his way. I am one proud momma!

Unexpected news

       

        This past week was like any other week with Jude. A few doctor visits and smiles. The appointments were follow ups and we created plans to keep Jude healthy. Wednesday night, I grabbed the mail and headed inside. The first piece of mail I opened up was from the Cleveland Clinic. Inside the envelope was a summary from Jude's genetics appointment. As I started reviewing the summary, I found some shocking news. When Jude had his chromosome array done in April they found he had three chromosome gains/losses. We were told that one was 15q24 microdeletion and the other two did not have any known disease causing gene. As I am reading the summary from our visit,
 it states that Jude has 15q24 microdeletion syndrome, a gain of 15q26.3 which does not have any
known disease causing genes, and a gain of 3p26.3. The gain from 3p26.3 comes the CNTN4 gene. A gain or loss of the CNTN4 gene is found in people with autism spectrum disorder. I was upset. It seems like unpleasant and shocking news about my sweet Jude keeps popping up.  All I could think was one more thing for Jude to face...but like everyone who has read my blog knows...Jude will do a fabulous job of keeping a smile on his face and being the best he can be!

Jude's July

      July has been a busy month. The week after Jude's testing he got his helmet, had his 6 month vaccinations which caused him to have a fever of 102.1, and we found out his left airways were swollen because he had a bacteria infection. He started on an antibiotic to clear up the infection and  breathing treatments to help his airways. Needless to say, between the breathing treatment, medications, helmet cleaning, and the mandatory daily bath because of his helmet...bedtime has become quite the process! Jude has more follow up appointments to further discuss what we do since he is obviously prone to getting sick. Let's just say, this fall and winter ... during flu season ... Jude will be living in a bubble! :)
      On a lighter note, tomorrow Jude will be seven months. That is absolutely amazing to me. At one point in my life, that would of been an eternity and now it seems like a quick snapshot in time. The other day, I sat and looked at pictures of Jude from the moment he was born until now. He has changed and grown so much. His therapist and I have seen a lot of improvement, especially once he started feeling better. He is using his forearms to hold himself up during tummy time, reaching for toys, and even sitting in the stroller seat instead of the car seat! He has become so animated and funny. He laughs hysterically when I jump or make faces...sometimes I catch him laughing so hard and I don't know why and I end up shaking with laughter on the floor. Every time I look at him he flashes an adorable smile that makes every part of me melt. He is so full of love and life and I am so proud of him!

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!