A little over two years ago, my son, Bentley was born. I found this little tid bit that my husband wrote while our son was in the NICU at Blank Children's Hospital (warning, this will be lengthy)
Sorry for the lack of updates from Tara and I over the last few days. We have experienced some minor bumps to the start of our baby's journey in life. Over the first few days in the hospital we, along with the nurses and doctor, observed Bentley having some abnormal eye movement. Every now and again (maybe 6-8 times a day for 5-10 seconds each) his eyes would roll up and to the back of his lids in both directions. This, along with other "twitching," was enough for the doctor to consult a physician at Blank Children s Hospital for more information. The symptoms the doctors observered and reported mimic seizures.
Bentley was transferred by ambulance to Blank Children's Hospital NICU on early Sunday afternoon while Tara was still recovering. Tara had a low blood level after her C-Section. She was feeling "weak and shaky" and required 4 bags of blood over a two day span. This delayed her discharge from Skiff till early Sunday evening, and she was without Bentley for quite a few hours. I decided to wait back with Tara so we could travel to Des Moines together after discharge. Bentley was not alone on his first road trip. Grandma Betty, Grandma Cathi, Grandpa Regan and Great Aunt Chris were right behind him.
When Bentley arrived at Blank, the doctors and nurses noticed one of his "episodes." This was of great comfort to Tara and I. That way we didn't need to relay our observations, they had their own. Bentley was fed through a tube in his nose at first. We chose this as a means to not interrupt the learning curve of breast feeding. He was hooked up to the normal wires, and received the normal blood tests to check cultures in order to rule out infection. Bentley was also giving a lumbar puncture or as Tara calls it, a Spinal Tap. This was performed in order to check the spinal fluid and rule out Meningitis.
Once Tara was discharged from Skiff, I drove her to Des Moines so we could be with Bentley. We booked at room at The Ronald McDonald House across from Methodist. This is a great asset, instead of using a pull out couch as a bed for two people. There wasn't much going on Sunday night in Bentley's room. Just a lot of observation and care. I couldn't stand seeing a tube up Bentley's nose, and the doctor had better options. We decided to use a bottle to feed the baby boy. This puts him back on an "at will" diet, and is much easier care for mommy AND Bentley.
Monday was gonna be a day of testing. When we arrived back to Bentleys room on Monday morning, the primary physician was performing an examination. He immedietly noticed that Bentley was having Hypo-Tonia (http://en.wikipedia.org/wiki/Hypotonia). This was probably another symptom of the underlying diagnosis.
Next up was an MRI. Bentley had to wear these sweet earmuffs to help keep him calm and still for the big machine. With the help of a full belly, we were told he did perfect while having this 15 minute test was performed. About an hour later, he had a scheduled EEG (http://en.wikipedia.org/wiki/EEG).
After Bentley headed down for the 2 hour EEG, the doctor stopped by to talk to us. He had looked at the MRI and had noticed an infarction ( http://en.wikipedia.org/wiki/Infarction ) in the brain. This is basically a stroke. The doctor says this happens in 25 of every 100,000 babies. There's a few reasons why this can happen. There's a 50/50 chance that his symptoms will end and he will live a normal life. Bentley could develop a need for speech and language therapy, physical therapy and or occupational therapy. He could continue having strokes. This all sounds scary, but it was a huge relief to have an answer after three days of speculation. At this moment we are waiting on results from the EEG. We have an eye exam scheduled today still, plus a meeting with a Neurologist at some point today or tomorrow. Tara and I are confident that everything is headed in the right direction, and should know more in the hours/days to come. We still dont have the information processed completely, and have many questions and concerns that we will get straightened out over time. Thank you for your support and prayers, and we will let you know more as we get the chance.
I sit here tonight my friends and I'm proud to report to you the latest new on Bentley. Around 18 months old Curt and I started to worry about Bentley's language development. We started to notice that he wasn't progressing forward like we felt he should. I started my venture with mentioning my concerns to our Parents As Teacher worker Sandy and she put in a referral to AEA. AEA came out and did an assessment on Bentley and found that we would probably benefit from having someone work with him once a month to try and get more words and sounds from him. We started this right away and were so excited for Bentley to begin this journey. Our worker that came out for AEA is Missy and she is wonderful and fantastic. Sometime's Bentley is stubborn for her and won't communicate with her in anyway, but recently he has been showing some major improvements and is working his way back up the charts. In April we went to our 2 year appointment with Dr. Frost and Curt mentioned to him that he is still concerned the Bentley is falling behind other children his age. Dr. Frost agreed and referred us to the speech pathologist with Skiff Hospital. He was evaluated for speech and his hearing the week of April 22nd. His hearing test came back clean as a whip and he excelled greatly. The speech evaluation, wasn't as pretty. She tested him at a 9 month old level and it was suggested that he begin with speech therapy 2 times a week. He's making sounds but just does not have any consonant sounds. Her concern is he would not be able to begin saying words if he didn't have a consonant sounds. We have been working with Lissa since the middle of April. Bentley is making strides!!! He still isn't saying things clearly but he is saying more and more. Lissa tells me that we can shape sounds later when he is older and that it's not a huge concern right now. What is more important is just getting him talking and communicating with us. I am so happy with the progress and outcome of what we could have been looking at 2 years ago.
Keep up the good work Bentley, your mom and dad are so proud of you!!! We are behind you all the way!
