Annessia Rose-Marie Diaz

I found out I was pregnant in early spring of 2010. Annessia’s father and I were very excited and nervous of course. My pregnancy was pretty normal. I actually enjoyed being pregnant. I never had heart burn or sickness. At about 7months my stomach started to measure small, and I also had some fluid loss so they placed me on bed rest. The doctors thought nothing of it and said they would see me a month later. At my next check up I was still measuring small and again had some fluid loss. They then decided to start giving me non stress tests and I had to be seen every week. Everything still seemed fine besdies my fluid loss. Well at my next appointment my fluid had dropped down to 8 (unsure of what fluid is measured in) but I know 5 is considered to be dangerously low. Seeing how I was full term they didn’t think anything of it and sent me home. The next week came and they measured my fluid again, this time it was at 1.9!! Instead if taking my daughter emergency c section (like they should have) they induced me and left my daughter in there for another 18hrs until I gave birth. Everything seemed normal until it came time for me to push. My contractions had stopped. They thought it was machines and such but nope, my contractions had literally stopped. It was a guessing game on when to push. When Annessia was finally born her stats dropped rapidly and she did NOT cry. As you can imagine my heart sank knowing something was wrong. As the doctor was taking care of me I could her the nurses and other doctors whispering. While the grandmother and father tried to listen in, the doctor started asking me questions like “are you sure you didn’t drink or do drugs?” (I did everything right in my pregnancy, I didn’t drink or smoke, I drank the amount of liquids I should have, heated up lunch meat and didn’t even drink pop. I was very pre cautious) I was very astonished he even asked me but I answered him “NO, check my screenings” he then had the nerve to say to me “well her eyes are puffy and she looks like she has Down syndrome” I quickly fired back in anger and sadness. Her eyes were puffy because I had a dry birth due to fluid loss.

Once I finally got to hold my baby I quickly realized her wrists looked “broken” one worse than the other. It almost looked as if she was double jointed. The nurses asked if they could take the baby to run some tests and try some feedings so we let them. Much to our surprise Annessia wasn’t tolerating feeds. She would throw up and turn purple while trying to eat. Before I had Annessia I was against breast feeding or pumping. Once she didn’t tolerate the formula I realized that I needed to pump breast milk. Amazingly I pumped about 2oz from each side my first time.! It was a blessing.( I produced more milk than any other parent in the Nursery) the next morning I was woken up to nurses telling me that they had to take my daughter by ambulance to another hospital that had a NICU because Annessia wasn’t doing so well. I as devastated and scared. They let me say my goodbyes and they took my baby from me. Her dad and grandmother followed the ambulance to the NICU so Annessia wouldn’t be alone. I however was not allowed to leave the hospital because I broke my tailbone. Annessia was at birth 5lbs 7 1/2 oz and 18inches long with a head full of dark black hair (almost like a wig) Just a few days before Christmas.

I was released to finally go see my baby at on Christmas Eve (December 24th) I was so afraid to hold my baby because she was so tiny. It was so unreal that my Annessia was in my arms finally. But I couldn’t hold her long due to her needing to be in an incubator. She had many issues with her oxygen levels dropping, heart rate dropping and trouble feeding. Everytime I would try to feed Annessia she would turn purple. After some time we figured out that she was aspirating and they placed a feeding tube in her nose. Once Annessia started doing better she was transferred to another NICU closer to home. There we found out Annessia had a sub mucus cleft palate and that I would not be able to breastfeed when she was ready to eat by mouth. I was stuck pumping. Then we were finally introduced to Thickner to add to Annessia’s liquids. They set the goal at honey consistency. It worked wonderfully. Annessia finally could eat by mouth without loosing oxygen. (It was a good thing she had a nice strong suck) at one point they thought Annessia was blind and deaf  (testing proved she was able to see and hear) she also needed hand braces to fix the poor posture of her wrist. once she overcame all of those obstacles, she had another one to hurdle over before they would let us go home. She wasn’t gaining any weight. Very little to none.

Annessia was released from the NICU January 11, 2011. She had to have frequent check ups for her weight gain and issues with constipation, then we had to start seeing specialist. On May 5, 2011 Annessia had an MRI which determined she had missing brain cells. The Neuro that she was seeing at the time failed to tell us that Annessia was at high risk for seizures due to this. Never gave us any seizure first aid tactics or paperwork to look at. Annessia had her first seizure February 2,2012. (Just over a year old) Due to the lack of knowledge we did everything wrong and she stopped breathing and choked on her saliva. She came out of the seizure and was taken by ambulance. The doctors ruled it febrile and sent us home with rectal Valium (diazepam), again with no knowledge of seizure first aid. So we had to educate ourselves. May came along and boom, another seizure. 15 minutes long.! She was given the Valium to stop the seizure. Got to the hospital they did a spinal tap and again ruled it febrile. June came along and Annessia started twitching in funny ways. Something wasn’t right, I rushed her to the ER. The doctors thought I was crazy until one of them seen the twitches. They immediately admitted her, Did a sleep study, another MRI and EEG and found seizure activity. She was placed on Keppra and we were finally given seizure first aid.! (At this time we went to a diff hospital)

September came along and Annessia had her first surgery (Adenoid removal). She tolerated the surgery very well. Her adenoids were removed because they were too large. December came along and it was decided Annessia needed leg braces to help support her weight. (Annessia has received OT, PT and speech since she was a month old) (Annessia learned to sit on her own after being a year old, she crawled at almost 2 years of age and also got her first tooth at this time, received her first pair of glasses in 2013 at almost 3 years old and started walking in a walker in 2014 at 3 years old almost 4 years)

2013 came along and it was again thought that Annessia was deaf so we got a test ran while she was asleep. Come to find out Annessia had “selective hearing” haha she only chose to listen and pay attention when she wanted. Besides that 2013 was a great year with little complications.! February 2014 Annessia said her first word “momma” it was a miracle. We were told Annessia would be a vegetable and never walk, talk, crawl, sit on her own, feed herself or anything. But she did it and still does all these things.! Then came April 21, 2014. The worst day of my life. I received a phone call at work saying that Annessia had stopped breathing and that she was being rushed to the ER. Once I got there it was like a horror movie. Code pink being called over the monitor, tons of docs and nurses flying right past me… All going to her room. They warned me of what I was about to see… Annessia was intubated and not breathing on her own. It was the most heart wrenching feeling in the entire world. I felt so lost. She was life flighted to Pittsburgh children’s hospital where she would end up staying for the next 5 weeks. Once there they tried to remove Annesias breathing tube to see where she stood she immediately stopped breathing right in front of me and started seizing (after being seizure free for 2 years) they quickly gave adavan in her IV and re intubated her. Annessia remained on life support for 30 full days. It didn’t look good, she had HMPV (human metapneumovirus) she then ended up getting MRSA from the breathing tube, another form of staff, and tracheitous. Those infections led to severe air way swelling (also Annessia was feisty and fought sedation, thrashed in bed and self extubated 3x while sedated) which all caused the intubation tube almost impossible to be removed. Then more bad news the infections caused septicemia (blood infection) as most know the infection spreads quickly and is very dangerous and life treating. Her chances didn’t look good. I prayed so hard day and night that God protect my baby I had faith she was going to pull through. On the 30th day of being intubated her tube was finally removed.!!!!!!! It was a miracle. We were told we would have a long road ahead of us with intense rehab therapy. I don’t think Annessia liked that idea because she made a full recovery in just over a week without rehab therapy! Doctors couldn’t believe it.! Tell me that isn’t miraculous.?!! The only unfortunate thing to come from this was Annessia forgot how to say “momma” She seemed to be doing well until December, she started lashing out, biting us & her teachers, started trying to bite and harm herself. It was because of the seizure medicine (keppra) we tried vitamin B6 to stop the anger and it didn’t work.

In January 2015 we made the decision to change seizure medication, we couldn’t have Annessia harming herself. We placed her on trileptal and  ended up having many break through seizures (clonic tonics). 3 of which almost took her life. She flat lined during a seizure and her oxygen levels dropped to 12 and the levels are supposed to be anywhere from 90-100. She ended up having 12 seizures in one day. It was a struggle for months. I have seen my child white, purple and blue so many times I can’t even count. I have had the fear of almost loosing her 4x. By the grace of God Annessia is still here (: Annessia was then placed on Vimpat and klonopin which now controls her seizures. Although I have missed some things it is very hard to fit 4 1/2 years of my childs life into a story. She is an amazing little girl with great determination and happiness.! She has been through more than enough but continues to prove how strong she is.! Annessia has just recently been diagnosed after many many years of wondering why she has developmental delay, low muscle tone and all the other issues. On 9/9/2015 Annessia was diagnosed with Bohring-Opitz syndrome. There are only 43 cases WORLDWIDE, Annessia being 44 (from my understanding) She is a miracle.! Thanks for following her amazing journey and supporting..!!

Some things i may have forgotten

  • Annessia loves Bubble Guppies & Peppa pig
  • She is ALWAYS happy and smiling
  • She loves to be outside (when it’s not too hot of course, we don’t want any seizures)
  • She loooovvvessss to swim
  • Annessia has attended school since she was 3, I feel this has helped tremendously in her development
  • Annessia loves to eat.!! Her fav food is Mac & cheese (like her daddy)

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