Monday, February 6, 2012

Bee-ography Monday

Our apologies for being so quiet as of late... no better way to get on track than with everyone's favorite weekly blogpost series: Bee-ography. This week's story comes from our beautiful little bee, Alejandra's mommy Natasha:

I found out I was pregnant in May of 2010 after suffering a miscarriage earlier that February. We were very happy and grateful to be given an opportunity to bring new life into this world. Although there were no significant complications with the pregnancy, towards the end of term, I started having preterm contractions. It began the day after Halloween, after a long evening of trick or treating. At first, my OB doc contributed it to the walking and I accepted it. But after it persisted for almost a week, I decided to go into the ER to be re-evaluated. There they realized I was in preterm labor and dilating. They gave me some medication to prevent further dilation/contractions, kept me over night, and the next day I was sent home. Later that week, I noticed decreased fetal movement. I observed baby’s movement throughout the day while at work and towards the end of the day I called my OB because she wasn’t as active as usual. My OB advised me to come into the clinic the next am for a Biophysical profile. I completed a non-stress test, some lab work, and had a 2D ultrasound. Everything checked out normal.

 Alejandra Rayna Rosales was born on December 10, 2010. She was so beautiful and a perfect replica of her daddy. She had his dark, black hair and precious dimples. When she was born she had low blood sugar and a decreased body temperature. The on call pediatrician checked her out and we were advised everything was fine. It was also difficult to feed her as she wouldn’t latch onto the breast, so the lactation nurse had to work with us on various techniques to promote feeding and by discharge she seemed to get the hang of it.

Everything was perfectly fine and Alejandra was the most gorgeous, precious baby girl in the world. Roughly around 3 months of age I noticed Alejandra’s head would just suddenly, out of nowhere turn to the right and her body would jolt as if she was startled and she would start crying. During a regular checkup with Alejandra’s pediatrician, we brought this activity up to her pediatrician and we were advised it might just be a reflex and to continue to observe it. As the weeks passed, the “incidents” happened more frequently and for longer durations with more forceful turning of her head and increased jolting of her body. Also, when it occurred her arms would reach out as her legs pulled up into her body. Alejandra’s dad also started to notice that Alejandra’s eyes would roll upward to the right. We became very concerned and started to record the “incidents” on my Blackberry.

On April 11, 2011, I called Alejandra’s pediatrician and voiced my concern about the increase in activity and tried to explain the movement. He stated it sounded like acid reflux (with her legs pulling up) and advised me to continue to monitor the activity. That same night as Alejandra continued to endure the discomfort of these “incidents”, Raymon and I made a decision to take her into the ped’s office the next morning and show him the videos.

That next am, April 12th, Alejandra’s regular pediatrician was out of the office but another pediatrician offered to assist and after watching the videos of the incidents, he advised us that she was having petit mal seizures and she would need to see a pediatric neurologist. He stated that the dates when the pediatric neurologist came to our town (he traveled from Sioux Falls) was unknown at the time and his office would contact us to set up an appointment once they had more information on the dates. He also advised us to take Alejandra to the emergency room if she experienced more than 8 seizures a day (she was experiencing approximately 6-8 per day) or if we had any other concern. That night, Alejandra had a seizure unlike any of the others she experienced before. We were terrified and immediately took her to the ER. During the visit, labs and x-rays were completed, but the results were normal. We were advised to follow up with Alejandra’s pediatrician that next day.

On April 13, 2011, Alejandra was examined by her regular pediatrician. He watched the videos of her seizures and stated she was having Infantile Spasms. He explained to us that it most likely meant there was something going on with her CNS and there may be some sort of brain damage. He stated further testing needed to be done and scheduled an electroencephalogram (EEG) for that following day.

The morning of April 14th, Alejandra’s EEG was completed. We were told to follow up with her pediatrician that afternoon because he thought he would have the results back by then. That afternoon, although he didn’t have the EEG results, he scheduled Alejandra for a magnetic resonance image (MRI) that evening. We were told that after the MRI was completed the on-call pediatrician would call us with a briefing of the results. While Alejandra underwent her MRI, Raymon and I researched Infantile Spasms. We wanted to be prepared for whatever and have some sort of information on what to expect. When we spoke to the on-call ped, he advised us that the results were significantly abnormal and that’s all that he could tell us. He told us that a follow up appointment with Alejandra’s regular pediatrician was scheduled for the next morning and we would receive further information during that time. We went home knowing there was something wrong with our baby but nothing more than that…it was a rough, sleepless night.

On Friday, April 15, 2011, Raymon and I met with Alejandra’s pediatrician for a complete report of the EEG and MRI results. He stated the results were substantially abnormal and that Alejandra had a rare neurological condition known as Hydranencephaly. He stated he believed she got it in-utero but couldn’t tell us how it occurred. He advised us that she would be significantly disabled for the rest of her life IF she lived to her 1st birthday, not developing any further than her age at the time (4 ½ months) and rely on us for all her needs. He told us there was nothing to do to reverse the damage and the only treatment is supportive care such as treating the seizures. He then prescribed her Keppra for her seizures. He wanted Alejandra to see a pediatric neurologist and stated we would also benefit because we might get more information about her condition. He gave us the option of either waiting for the pediatric neurologist to come from Sioux Falls or traveling to either Denver, CO or Minneapolis, MN to see one. As concerned parents, we wanted our baby to get the best care possible as soon as possible, so we chose to go to Minneapolis.

Alejandra was evaluated by a pediatric neurologist at the University of Minnesota Children’s Hospital on April 26, 2011. He was extremely helpful in answering questions (very direct) but he gave us little hope on her progress. Before he gave us any information, he asked what we were already told by her pediatrician back home. After telling him what we were already advised, he proceeded to give us his information. He stated the injury to her brain is remarkably significant and there is so much damage done that she wouldn’t progress any farther than where she was at. He thought she was blind because she wouldn’t follow objects he placed in her line of vision (she was 4 ½ months, just now started Keppra and just about ready for a nap). When asked about experiencing pain from the seizures, he told us they were not painful. But why would they make her cry and upset then? I asked him about her benefiting from physical therapy, as he just told us she wouldn’t walk or possibly even crawl, he stated “he didn’t think she would”. He told us that the best care she could get is what we have been providing her with thus far and that’s what would help her to thrive in life.

Although our hearts were broken, we feared losing our baby, and were expecting the worse…we did just as he recommended. I immediately went home and conducted all the research I could on Hydranencephaly. I found web pages and support groups (Brayden Alexander J) and sought all the information I could. When I thought Alejandra would benefit from something I pushed her pediatrician to prescribed it/refer her. At first he would say she would benefit from whatever I was asking for in the future, but I kept asking over and over. As a student nurse, I knew how important early intervention is and that’s my goal with Alejandra. After he realized I was not giving up, he finally gave in. I got all the referrals I requested; vision evaluation, spasticity clinic, Baclofen prescription (which she benefits greatly = no more muscle spasms), therapy, etc.

Alejandra Rayna turned one year old on December 10, 2011. It was a very exciting and joyful celebration! Today, she is a very beautiful, happy and joyful baby girl. Her physical and mental development is delayed by approximately five months but she continues to progress further than expected by medical doctors. She still continues to have seizures but not on a daily basis as they are controlled with Keppra. She will be returning to the University of Minneapolis Children’s Hospital in May of 2012 for follow up testing and evaluation with her pediatric neurologist. At that time, he will evaluate her condition and determine how she has progressed and developed.

She was recently evaluated by the Shriners’ Hospital for Children - Twin Cities (referred to by Birth to 3) and everything went exceptionally well! They assessed and evaluated Alejandra's condition and provided us with great and very helpful information. The Orthopaedic ordered a pelvic x-ray and we were advised that everything was developing as it should and there was no concern with her bone growth. The Nurse practitioner stated that Alejandra is “doing great given her condition" and that she is "progressing remarkably". The Occupational and Physical therapist also stated that Alejandra is doing well and that they could see she gets the therapies/treatments she needs to reach her full potential on a daily basis. They advised us that Alejandra does have full range of motion and although she experiences some increased muscle tone (spasticity) it is not as severe as expected to be with her condition. They asked about her therapy sessions and recommended that she get more physical therapy every week, at least 2 sessions per week (which she just started with Children’s Care on 1/11/12). The Women Auxiliary of the Shiners’ provided Alejandra with an Otter bath chair when we explained how much she loves taking bathes but how it is starting to become more difficult to bathe her as she is growing out of her infant bath chair. They also explained to us about the possible future use of a stander (Children’s Care tried this with her and she loved it), AFOs and wedges to help with her muscle strength and tone. They would like to see Alejandra every six months in order to monitor her growth and development. We booked her next appointment with the Shiners’ Children Orthopaedic Hospital to coincide with her neurologist appointment in May of 2012.

Alejandra also currently continues to have once a week therapy sessions with the Birth to 3 Program (found on my own). They alternate speech, occupational, physical, and vision therapy weekly in order to help her progress and develop as much as possible. I can definitely say that these sessions have made a great impact on her development. She has gained better head control and is able to sit supported by herself. With help, she loves to stand and even mimics walking. During tummy time, she pushes with her legs to try to crawl. Alejandra’s current goal is to gain more strength and support in her arms. She does not have full use of her arms and hands yet but she is starting to reach out/towards objects. She does wear hand splints to help stretch the muscles and open her hands for grasping. She is making remarkable progress and impresses her therapists each time they come.

According to medical research, Alejandra should not be able to feel or express emotion, touch, see, hear, talk, crawl, walk, or anything that involves her being independent. We were told that she would not know us or her surroundings. We are proud to announce that Alejandra is and will continue to prove medical science wrong. She does feel and express emotion by crying when she is upset and smiling when she is happy. She loves cooing, laughing, and cuddling. She recognizes familiar voices and faces. Her favorite show is Barney and if she does not get to watch him at least once a day, she gets bossy and throws a little fit but once his show is on she starts smiling and gets filled with joy. She loves bath time and of course, has a collection of rubber ducks that she plays with. She enjoys playing with light up and musical toys. She knows when she is not at home and gets fussy when she is ready to go home.

Waking up every morning to Alejandra’s bright and happy face is a true blessing. She has an amazing little personality and can brighten anybody’s day with a smile. She is our Nina (little girl) and we would not change one thing about her. To us, she is perfect!!

I always wanted to be a nurse and am currently working toward my RN. After my oldest daughter was born, I never thought I would have any more children, and never did I think I would have a child with special needs. And then God blessed me with a gift. That gift was a precious little baby girl who would require constant and endless love, care, devotion, and a voice that would speak high, loud, and clear for her needs. In my heart I believe that my desire to become a nurse and being blessed with Alejandra was all part of God’s plan of life for both of us. She has taught me that life is very precious and sacred and it should not be taken for granted, that we should always love and cherish what we have, because life is uncertain and one day, it may all change.

1 comment:

  1. Bruce, Janice and Travis JohnsonFebruary 8, 2012 at 2:40 PM

    Natasha, this is so beautifully written and chronicles Alejandra's life and journey with great detail and abundant love. The pictures are precious. I just want to say that my son is 31 years old now living with hydranencephaly and is happy and healthy. We have taken it one day at a time, dealing with all that comes his way, giving voice to his needs, finding the right people and resources, and loving every precious minute he is blessing us with. Blessing you on your journey.


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