I met Jaidah's social worker for her one month post-op visit in Missoula with her neurosurgeon. He showed me her before and after CT scan and I could see where the ventricles in the brain were lined up more evenly although her brain had not expanded as much as he would have liked. There was a gap between her brain and the skull where the debridement had been done taking out scar tissue, blood clot and fibrous material. The brain expanding and growing pushes on the skull and that is what makes the head grow. Her little brain had a long way to go to fill in that gap. Finally it was time to go. Tiffany and everyone in the Child Protective Services office had become very attached to Jaidah and I know it was hard for her to let her go. We shed a few tears and we were on our way.
Papa Gary was waiting for us when we got home. His first experience with her was when I handed her to him to hold and he gave her a shock from static electricty. It was the first baby he had held in over 25 years and needless to say he was a little nervous. She was such a good baby from the start with us. She was just starting to eat baby foods but wouldn't take much more than a spoon or so and wouldn't ever drink more than a couple of oz of milk at a time. We never had a problem putting her to bed, she would go to sleep without a problem. From the start we would turn on her little music/light box and she'd work herself into the corner and just snuggle down. I was so thankful we had the baby monitor so I could listen for any squeak she may make during the night. The day before we picked her up she had rolled over for the first time from her back to her stomach so that was the first project we started working on. She'd roll to her good (right) side over and over. We'd work on tummy time where she'd hold her head up for a few seconds. She didn't like it on her stomach but would try to grab toys. She could take a rattle in her right hand and would bring it to midline. I started adding a little rice cereal to her fortified formula trying to beef her up some.
When she first came to live with us she was pretty much a sober faced little girl. We could get her to smile once in awhile but for the most part at that time she stayed pretty expressionless. She wouldn't snuggle in when we held her either, her little body seemed to be very stiff. Constipation was a problem from the start and she even had a little fissure that would rip whenever she had a bowel movement. I have found through research that this is common in children with cerebral palsy. Probably from the lack of muscle tone on the side affected by the CP. In the beginning her little left hand would stay clenced in a fist and the elbow bent at an angle. Sometimes her little fingers would turn white from clencing so hard. She wouldn't move her left leg much either. This was also from the effects of the cerebral palsy affected her left side. We were told the left side of her face and mouth probably had loss of sensation too. Immediately after her injuries we were told that she was probably completely blind in her left eye and could only see partially in her right eye which although it was her "best" eye it had the most optic scarring. We started working on her rolling and sitting right way and would prop her up with a boppie pillow in front of her mobile. From the start she as loved music and any toy that had lights and music was a special toy. I studied everything I could about raising a child with handicaps both visual and physical and it is the goal of my husband and I that though she has handicaps and special needs, she need not be handicapped by these. We want her to be able to do everything she is capable of doing and if she can't do something the "normal" way, then she'll find another way to do it.
Before Jaidah came to us, I had contacted the Hadley School for the Blind in Chicago. They offer free online/home study classes in many different subjects on raising children with visual impairments and/or handicaps which have helped me immensly. I remember the number one thing my first instructor told me when I was giving her some history on Jaidah. She said the first thing I needed to remember was that she is just a little girl, and the best thing we can give her is love. Her visual problems, her physical problems are all secondary to that and love can work miracles. Every morning when we would go to get her out of bed we would give her a big hug and pat her back. We knew she was "getting it" when one morning she started patting us back. It wasn't long before everytime she got a hug from someone she would start patting them on the back too. I wanted to stimulate Jaidah's vision as much as possible and everytime I would go shopping I would look for little things that would grab her attention. One of her favorites was a silver mylar bow. She would grab the bow and shake it back and forth in front of her right eye. In fact anything that she could shake in front of her eye she was interested in. I found what we called, "Spidey", a florescent pink, rubbery, long tendril looking thing that had a ball that flashed when you hit in against something. She loved "Spidey" and would shake it back and forth for what seemed hours. She loved a mylar balloon even long after it was dead of air she would grab it, shake it, and loved the crinkle sound. Little dollar store toys that lit up were special to her.
We kept up introducing new fruits/veggies and she would respond with an open mouth when I started saying "take a bite". We'd had her for two weeks when she started Physical Therapy. It was funny he way I found her therapists. At the time we owned a Bagel and Deli Shop and a customer came in talking about a book club group she was in. I asked her if she had ever read any books on raising a blind child and when she asked why I told her Jaidah's story. I told her I needed to find a Occupational Therapist and Physical Therapist for her and didn't know where to check as I wanted someone who worked specifically with kids. Imagine my surprise when she informed me she was a Pediatric Occupational Therapist and her partner, Leslie, was a Pediatric Physical Therapist, and they also worked with a Pediatric Speech Therapist. Everyone I needed! I immediately called and made an appointment for her and two weeks after she had been home we got her started in PT. Leslie was happy with the things she could do at that time; rolling, head straightening in the tilt position, crossing over midline, etc. It was obvious from the start this little girl was eager to learn. Everyday became training time when Gary and I would incorporate play time with PT time. We'd roll her over on her tummy, which she didn't like, and she'd roll back over, and then back on her tummy again. We'd work her little arm by stretching her elbow, lifting it over her head, rubbing her little rib cage as we stretched her arm so she wouldn't freeze into that contracture. Leslie explained to me that it was important to stretch her and rub her rib cage as this would help with her breathing also. We'd stretch her little fingers out and rub them trying to straighten them from the tight little fist she automatically would make. The only time she wouldn't have it in a fist would be when she was asleep. She loved bouncing on my exercise ball and everyday we would bounce. This was a good way to "wake up" the little neurons in her brain and get her ready to workout. One day Gary was watching her and with her left hand she picked up a light weight rattle, shook it a little and the dropped it. It was obvious that sometimes her little brain was trying to get that hand to work. Her movements would be very jerky but she would keep trying. This was a sign that both sides of the brain were trying to work together and we would encourage the use of that hand by providing her small things that she could hold onto with that hand. She started using it to grab the pieces of ribbon on her bows and would pull it sometimes. Everytime she did somthing new we took such pride in her accomplishments. At night when she sucked her thumb I noticed she would bring both hands to midline.
We'd had her for about three weeks when she started saying da,da,da. She was ten months old. Before this she rarely made a sound. From the start long naps weren't something she was crazy about. Usually a 15-30 minute nap was all she would do. If we travelled somewhere she rarely fell asleep for more than 15 minutes at all in her carseat. I've read that children with cortical visual impairment actually see better when there is movement. Maybe this is why she didn't sleep in the vehicle, she could see something moving and didn't want to miss a thing. We had a plywood corner chair that Leslie gave us to strap her into to get used to sitting. We noticed she was starting to use her left arm more and more. She would rub her eye and started putting out her left arm as a support when leaning to that side. She loved making sounds by blowing bubbles and raspberries through her fingers. She had a belly laugh that was so cute to hear. By this time she was really starting to warm up to us and was eager to see us and would get so excited when we'd get her out of her crib in the morning or from a nap. When we took her to her pediatrician and WIC we found out she was in the 3rd percentile for height and weight. I noticed that there were days she would be pretty fussy. On those days she would hardly eat and wouldn't have a bowel movement. We had to give her enemas to loosen her up and then she'd be fine again.
We'd had her for about 6 weeks when she was evaluated by a field rep from the Montana Deaf and Blind School. Functional tests seemed to confirm that she only had limited vision in her right eye. She did respond to light to a certain extent. She was starting to try to sit up by herself at this point and using her arm as a prop. When she was 11 months old she started rolling from her back to tummy and back again. Started pulling her self up to a sitting position while lying in hr boppie pillow. Would bring her hand to her lips flathanded to "ba,ba,ba". Put her right foot into her mouth for the first time. MSDB rep gave us report on her vision tests. Said she couldn't see more than about 3 feet in front of her. That same day I took her home and while lying on the floor Gary turned on the ceiling fan and immediately she looked up and you could see her little eyes trying to follow the blades around a few times before they got tired. This was encouraging, it was obvious she could see at least 6 feet. When we took her outside she had photophobia especially in her right eye and would immediately cover that eye or turn towards my shoulder to protect from the light. I bought her some little sunglasses to help with the bright light.
I would take Jaidah to work with me on a regular basis. Our customers were so good and would always be eager to see her and ask about her. In the beginning when she was first hurt I had put a picture up of her asking for their prayers for our little grand-daughter. I had so many people come in and tell me they were praying for her, and even people across the country had her on prayer rolls in different churches. I even had customers ask to pray with me right there in the restaurant. It was good to take her with me. It gave her a chance to get used to loud noises and various voices. I noticed from the start that whenever she was in a room with more than a few voices it would agitate her. Probably because she couldn't tell where the voices were coming from. Being around people at our business gave her a chance to socialize with someone other than just Gary and I. I'd take her jumper and she would jump, jump, jump, and play in her portacrib. As she became older I would put her in a backpack and wait on customers and haul her around at the same time. She loved it and would even fall asleep while I packed her around.
Before we brought Jaidah home I was trying to think up a little jingle I could sing to her about her name. I finally came up with "Jaidah Bug, Jaidah Bug, Grandma's little Lady Bug" and would sing it in a funny sing/song way. My ex-husband, her grand-father, asked me one day why would I want to nickname her Bug? It just fits and always has. She's our little Jaidah Bug, the Bug and everyone calls her that now. She's just a little Bug, small, pint-sized, and when she wears her sunglasses, looks like a little bug. Thus, the BUG!
Wednesday, June 23, 2010
Saturday, June 19, 2010
Our Life Changing Story Begins...
I've worked in the medical office field for over 30 years and before September 2007, I thought I had a general knowledge of what the term Shaken Baby Syndrome meant. I never realized however, how close I was to to learning first hand what that term really meant and how so many lives could be affected by three words.
September 22, 2007, I had just got home from our business at the time and had been on my feet for over eleven hours. I was unloading the day's happenings with my husband when I received the call...At first I didn't know who it was because he was crying so much I didn't recognize his voice. It was one of my three boys, but who? It wasn't until he cried, "Mom, you've got to come down here right now, something's wrong with Jaidah!", that I realized it was my youngest son calling about something wrong with his 4 1/2 month old baby daughter. I asked what's wrong and he cried again, "I don't know, she wouldn't wake up, she's having seizures or something!" Thus, started the night of nightmares.
When the paramedics had arrived at their home they found her unresponsive and in respiratory failure. On route to the hospital an endotracheal intubation was performed so the paramedics could ventilate her. She was a pediatric code upon arriving at the hospital and an initial Cat Scan was obtained and revealed a significant right subdural bleed and a midline shift to the left. The radiologist noted there was a blood clot and concern for active bleeding. There was minimal response to light equally in both eyes. It was determined at that time that her injuries were highly suspicious of non-accidental trauma and authorities were called. Jesse and I stayed in contact throughout the night and around 11 p.m. he called to say Jaidah was being life-flighted to Spokane, Washington to be admitted to Spokane Children's Hospital as soon as a twin engine plane could arrive to pick her up in Helena. I debated about leaving right then on the 4+ hour drive but the weather was not good, and I was so tired from working all day and the stress of what was going on. Gary wanted me to wait until daylight to start the drive and was worried I wasn't in any shape to be driving right then. Before I left the next morning at about 7 a.m., I called the hospital to get an update on her condition. We had thought they were going to do an emergency surgery upon admission and I wanted to know how she was doing. Because of privacy issues, the nurse wouldn't give me any information until I finally begged her in tears to just let me know if she was still alive. She told me yes, but in critical condition.
The four hours it took me to get to Spokane was filled with mind racing prayers for this little girl, my grand-daugher, who I had only seen once before in her life when she was first born. I didn't know what I would find when I finally got there. When I got to the PICU I was told by the nurses no one was allowed in to see her at that time. I found out that due to the fact that Montana State Department of Family Services had taken emergency custody of her, and at that point anyone was a suspect until things could be sorted out, no one would be allowed to see her. Finally her parents and I were able to meet with the physician on call and the hospital social worker who explained the severity of her injuries at that point and arrangements were made so we could see her. Because it was obvious that I wasn't a suspect, I was allowed into her room whenever I wished but the kid's had to take turns and could only go in with either me or the social worker for only 5 minutes at a time.
Walking into that hospital room to see that sweet little baby hooked up to tubes and monitors just to keep her alive, brought me immediately to tears. How could anyone hurt this little angel? She barely weighed 10 lbs. and was always such a good baby. I remembered how when I would call Jesse to see how she was doing previous to her injury, he would always tell me how good she was and how she never even cried. He would tell me how she already was a "daddy's girl", and wouldn't go to sleep until he tucked her in. He was working two jobs at the time and even when getting home after midnight would hold and rock her back to sleep. It was so sad to see the pain in my son's eyes as he looked at his little girl and would hold her little hand and tell her "daddy's here Jaidah, daddy's here". I asked the nurse if the ventilator was removed would she be able to breathe on her own, and she told me that although she was making some spontaneous breaths on her own, they were not enough to sustain life. I think at the time she was only taking about 6 breaths on her own per minute. When I asked when will we know if she is going to live or not, she told me that maximum swelling in the brain occurs 72 hours after injury and if she made it through that, there was a good chance she would survive but most likely would suffer major damage. She was already demonstrating posturing especially on the left side where her little hand would stay in a clenced fist position and she was listed in critical condition. I was told that if she lived she would be in the hospital for a month and remain on life support for weeks.
I went to the Social Worker in charge and told her that if this little girl needed to be placed with someone, that I wanted to be the one to take her. My husband, Gary, was Jaidah's step-grandpa and hadn't even met her yet at that time, but when I called him in tears and told him I couldn't turn my back on her, my wonderful, sweet husband who has a real soft spot for poor little defenseless things in life whether they be children or animals, and also in tears, confirmed what I already knew what he would say. "We will do whatever we have to do, to take care of this little girl".
My family had been raised as members of the LDS Church and we had always believed in Priesthood blessings> I asked my son if he wanted Jaidah to have a blessing and I immediately made arrangements through the Mormon Missionaries serving in that area to come and perform the blessing. Up until that time I didn't know if Jaidah would live or die, but when these two young men who knew nothing of her circumstances other than she was a little baby on life support in critical condition, began the blessing , I knew from the words they said that she would live. She was promised that she would live but she would face her trials and challenges in life but would live to fulfill her mission on this earth. Jaidah has been a fighter from the day she was born and continued to fight now. I stayed in Spokane for three days before I had to return home to Kalispell, Montana. It tore me apart to leave this little girl. I had spent almost every waking moment with her from shift change in the morning until 10 p.m. just holding her little hand, singing to her, and promising her that "Grandma will be there for you, Sweetie."
According to the nurses, her little brain did not swell after the initial admission and she was even trying to open her eyes on the day of what should have been maximum swelling. She was off the ventilator five days after admission and was discharged after sixteen days. She could have been discharged a couple days earlier but the State didn't have a foster home ready in Helena yet and she had failed her first carseat test for the long trip back home. Due to positioning in the carseat she had to be able to sit up for at least five hours and have it not affect her oxygen levels. Normally agencies like to initially place children in need with family members but they also feel the natural parents have a right to see the child on a regular weekly basis until they are either reconciled or parental rights are terminated. Because I lived over three hours away from Helena, it was felt better to intially place Jaidah with foster parents who lived in the same area. We were blessed with an older couple, a pastor and his wife, who was a retired nurse. Jesse said that if she had to be in foster care at that time, he couldn't have picked a better family for her.
Jaidah's discharge summary from Sacred Heart Children's Hospital included the following:
Traumatic brain injury consistent with non-accidental trauma with:
1. Cortical infarction of the right hemisphere, left frontal lobe, and left cerebellar region.
2. Subdural hematoma, right and left.
3. Retinal hemorrhages bilaterally.
4. Retinal detachment on the right.
5. Distal radius fracture.
6. Mild feeding intolerance.
7. Visual defect.
Two weeks after Jaidah's discharge there was a scheduled hearing for the State to retain temporary custody of Jaidah. I met my best friend in Helena, as well as my parents so we could attend together. My ex-husband, Jaidah's grand-father was also there. Afterwards we were able to see her for a little while at the department. I remember my dad telling me the night before, "you can't raise a handicapped baby". I don't know what he was expecting to see, but what we saw when we walked into that visitation room was a little baby, a perfectly normal looking little baby, a baby with terror in her eyes because she couldn't see and didn't know any of us, and because of the brain injury was suffering a regression in her age from 4 months back to what was only a 16 day old. But she was still a baby, and dad's tune turned from "you can't raise a handicapped baby," to "she's just a little baby, and just needs love". I assured him we could give her that. I remember her crying and being inconsolable. It seemed to bother her with lots of voices talking; probably because she couldn't sort out where they were coming from. Finally everyone left the room and I was left with her alone. I hugged her close and her little fingers wrapped around mine as we rocked and I sang the same little songs I had sung to her in the hospital and whispered the same words I had whispered to her in the hospital, "Grandma will be there for you, Sweetie." She finally relaxed and for the remainder of our visit she slept in my arms. I made it a point to wear a specific cologne every time I saw her thereafter, figuring that maybe if she couldn't see me well, she could at least recognize my smell!
When I returned home I immediately looked into what had to be done so we could get her in our home. I found out that Gary and I would have to attend Foster Parenting Classes but the State wanted to pursue termination of rights and wanted us to undergo classes for Adoptive Parents at the same time. Because she was to be considered a special needs adoption we also needed to be certified as specialized foster parents. I thought because she was my natural grand-daughter it would be a breeze but we had a few hurdles to jump over first. I found out that in our county the Foster Parenting Classes had been cancelled due to not having enough potential parents and another one wouldn't be held until Spring. That meant at least four more months. I found out we would have to undergo all the background checks and applications for adopting also, and would have to make sure our home was acceptable with child locks, fire alarms, carbon monoxide detector, fire extinquishers, etc. We found out that before they would allow us to adopt we would have to have her in our home for at least six months. That meant at least the following August.
In December we found out that the eye doctor had determined Jaidah had a large blood clot behind her right eye, her best eye, and it needed surgery. Her Social Worker traveled to Salt Lake City to have it done, but when she got there and upon examination the clot had dissipated 85% and the surgery did not need to be done. We went to Helena to see her in December before Christmas and this was the first time Gary had met our little girl. He was instantly smitten with her. We could hardly imagine we were shortly to become parents all over again to a baby, a baby who had significant special needs. An undertaking, yes, but we both already loved her and were willing to do whatever we had to do to make her ours.
In January I got a call saying Jaidah needed urgent surgery on her little brain. She had developed a very large chronic subdural hematoma on the right side as well as scar tissue. The doctor was concerned and felt that a simple chronic hematoma could be drained through a hole in the skull but this problem was large enough that a craniotomy had to be performed to remove the large section. It was hoped that this would leave room for her little brain to grow. I went to Missoula to be there with her and her foster parents and had the opportunity to hold her and love her throughout the day before her scheduled surgery. She was so tired, and wanted a bottle but because of surgery she couldn't have one. I felt so sorry for her and just held her before they took her away. Again, we didn't know if she would live or die. This wasn't just a simple operation. It took longer to complete the surgery than expected and when the doctor came out he said it was good they had gone in, she had lots of blood and fibrous material in there. They were able to stop the bleeding and cleaned out a substantial amount of the scar tissue. This left a large gap between her skull and her brain and it was hoped the brain would begin to grow into this spot. I remember her coming out of surgery and that little bandaged head. She was puffy from all the fluids they were pumping into her and just wanted to suck her thumb. I stayed the night and was there the next day when we were allowed to sit her up for a short time in our laps. Again, I had to leave her in the hands of others. I was so ready to just take her home. About four days before I was going back to Missoula for her one month post-op visit, I got a call from her Social Worker in Helena. Her foster mom had fallen and broke her ankle and Jaidah was being sent to another home. I told her she needed to be with us, her family, I didn't want her being shifted around. The little girl had already had enough trauma in her life, she didn't need anymore. We hadn't completed our classes yet, we hadn't had a home visit, and at that late date it didn't look like it was going to be done in time. We had two different counties trying to correlate things and two different supervisors who couldn't get together in time. I was almost in tears trying to reach someone in the last hour of that Friday trying to make arrangements for a home visit. Finally I had a call from her Social Worker who said she was making the call and I could bring her carseat down to Missoula when we met at post-op. I took pictures of my home just to be able to show her we were ready and we were safe. We had Jaidah's room all set up for her with decorations, crib and monitors. Another stage of our life changing circumstances was just about to start...
September 22, 2007, I had just got home from our business at the time and had been on my feet for over eleven hours. I was unloading the day's happenings with my husband when I received the call...At first I didn't know who it was because he was crying so much I didn't recognize his voice. It was one of my three boys, but who? It wasn't until he cried, "Mom, you've got to come down here right now, something's wrong with Jaidah!", that I realized it was my youngest son calling about something wrong with his 4 1/2 month old baby daughter. I asked what's wrong and he cried again, "I don't know, she wouldn't wake up, she's having seizures or something!" Thus, started the night of nightmares.
When the paramedics had arrived at their home they found her unresponsive and in respiratory failure. On route to the hospital an endotracheal intubation was performed so the paramedics could ventilate her. She was a pediatric code upon arriving at the hospital and an initial Cat Scan was obtained and revealed a significant right subdural bleed and a midline shift to the left. The radiologist noted there was a blood clot and concern for active bleeding. There was minimal response to light equally in both eyes. It was determined at that time that her injuries were highly suspicious of non-accidental trauma and authorities were called. Jesse and I stayed in contact throughout the night and around 11 p.m. he called to say Jaidah was being life-flighted to Spokane, Washington to be admitted to Spokane Children's Hospital as soon as a twin engine plane could arrive to pick her up in Helena. I debated about leaving right then on the 4+ hour drive but the weather was not good, and I was so tired from working all day and the stress of what was going on. Gary wanted me to wait until daylight to start the drive and was worried I wasn't in any shape to be driving right then. Before I left the next morning at about 7 a.m., I called the hospital to get an update on her condition. We had thought they were going to do an emergency surgery upon admission and I wanted to know how she was doing. Because of privacy issues, the nurse wouldn't give me any information until I finally begged her in tears to just let me know if she was still alive. She told me yes, but in critical condition.
The four hours it took me to get to Spokane was filled with mind racing prayers for this little girl, my grand-daugher, who I had only seen once before in her life when she was first born. I didn't know what I would find when I finally got there. When I got to the PICU I was told by the nurses no one was allowed in to see her at that time. I found out that due to the fact that Montana State Department of Family Services had taken emergency custody of her, and at that point anyone was a suspect until things could be sorted out, no one would be allowed to see her. Finally her parents and I were able to meet with the physician on call and the hospital social worker who explained the severity of her injuries at that point and arrangements were made so we could see her. Because it was obvious that I wasn't a suspect, I was allowed into her room whenever I wished but the kid's had to take turns and could only go in with either me or the social worker for only 5 minutes at a time.
Walking into that hospital room to see that sweet little baby hooked up to tubes and monitors just to keep her alive, brought me immediately to tears. How could anyone hurt this little angel? She barely weighed 10 lbs. and was always such a good baby. I remembered how when I would call Jesse to see how she was doing previous to her injury, he would always tell me how good she was and how she never even cried. He would tell me how she already was a "daddy's girl", and wouldn't go to sleep until he tucked her in. He was working two jobs at the time and even when getting home after midnight would hold and rock her back to sleep. It was so sad to see the pain in my son's eyes as he looked at his little girl and would hold her little hand and tell her "daddy's here Jaidah, daddy's here". I asked the nurse if the ventilator was removed would she be able to breathe on her own, and she told me that although she was making some spontaneous breaths on her own, they were not enough to sustain life. I think at the time she was only taking about 6 breaths on her own per minute. When I asked when will we know if she is going to live or not, she told me that maximum swelling in the brain occurs 72 hours after injury and if she made it through that, there was a good chance she would survive but most likely would suffer major damage. She was already demonstrating posturing especially on the left side where her little hand would stay in a clenced fist position and she was listed in critical condition. I was told that if she lived she would be in the hospital for a month and remain on life support for weeks.
I went to the Social Worker in charge and told her that if this little girl needed to be placed with someone, that I wanted to be the one to take her. My husband, Gary, was Jaidah's step-grandpa and hadn't even met her yet at that time, but when I called him in tears and told him I couldn't turn my back on her, my wonderful, sweet husband who has a real soft spot for poor little defenseless things in life whether they be children or animals, and also in tears, confirmed what I already knew what he would say. "We will do whatever we have to do, to take care of this little girl".
My family had been raised as members of the LDS Church and we had always believed in Priesthood blessings> I asked my son if he wanted Jaidah to have a blessing and I immediately made arrangements through the Mormon Missionaries serving in that area to come and perform the blessing. Up until that time I didn't know if Jaidah would live or die, but when these two young men who knew nothing of her circumstances other than she was a little baby on life support in critical condition, began the blessing , I knew from the words they said that she would live. She was promised that she would live but she would face her trials and challenges in life but would live to fulfill her mission on this earth. Jaidah has been a fighter from the day she was born and continued to fight now. I stayed in Spokane for three days before I had to return home to Kalispell, Montana. It tore me apart to leave this little girl. I had spent almost every waking moment with her from shift change in the morning until 10 p.m. just holding her little hand, singing to her, and promising her that "Grandma will be there for you, Sweetie."
According to the nurses, her little brain did not swell after the initial admission and she was even trying to open her eyes on the day of what should have been maximum swelling. She was off the ventilator five days after admission and was discharged after sixteen days. She could have been discharged a couple days earlier but the State didn't have a foster home ready in Helena yet and she had failed her first carseat test for the long trip back home. Due to positioning in the carseat she had to be able to sit up for at least five hours and have it not affect her oxygen levels. Normally agencies like to initially place children in need with family members but they also feel the natural parents have a right to see the child on a regular weekly basis until they are either reconciled or parental rights are terminated. Because I lived over three hours away from Helena, it was felt better to intially place Jaidah with foster parents who lived in the same area. We were blessed with an older couple, a pastor and his wife, who was a retired nurse. Jesse said that if she had to be in foster care at that time, he couldn't have picked a better family for her.
Jaidah's discharge summary from Sacred Heart Children's Hospital included the following:
Traumatic brain injury consistent with non-accidental trauma with:
1. Cortical infarction of the right hemisphere, left frontal lobe, and left cerebellar region.
2. Subdural hematoma, right and left.
3. Retinal hemorrhages bilaterally.
4. Retinal detachment on the right.
5. Distal radius fracture.
6. Mild feeding intolerance.
7. Visual defect.
Two weeks after Jaidah's discharge there was a scheduled hearing for the State to retain temporary custody of Jaidah. I met my best friend in Helena, as well as my parents so we could attend together. My ex-husband, Jaidah's grand-father was also there. Afterwards we were able to see her for a little while at the department. I remember my dad telling me the night before, "you can't raise a handicapped baby". I don't know what he was expecting to see, but what we saw when we walked into that visitation room was a little baby, a perfectly normal looking little baby, a baby with terror in her eyes because she couldn't see and didn't know any of us, and because of the brain injury was suffering a regression in her age from 4 months back to what was only a 16 day old. But she was still a baby, and dad's tune turned from "you can't raise a handicapped baby," to "she's just a little baby, and just needs love". I assured him we could give her that. I remember her crying and being inconsolable. It seemed to bother her with lots of voices talking; probably because she couldn't sort out where they were coming from. Finally everyone left the room and I was left with her alone. I hugged her close and her little fingers wrapped around mine as we rocked and I sang the same little songs I had sung to her in the hospital and whispered the same words I had whispered to her in the hospital, "Grandma will be there for you, Sweetie." She finally relaxed and for the remainder of our visit she slept in my arms. I made it a point to wear a specific cologne every time I saw her thereafter, figuring that maybe if she couldn't see me well, she could at least recognize my smell!
When I returned home I immediately looked into what had to be done so we could get her in our home. I found out that Gary and I would have to attend Foster Parenting Classes but the State wanted to pursue termination of rights and wanted us to undergo classes for Adoptive Parents at the same time. Because she was to be considered a special needs adoption we also needed to be certified as specialized foster parents. I thought because she was my natural grand-daughter it would be a breeze but we had a few hurdles to jump over first. I found out that in our county the Foster Parenting Classes had been cancelled due to not having enough potential parents and another one wouldn't be held until Spring. That meant at least four more months. I found out we would have to undergo all the background checks and applications for adopting also, and would have to make sure our home was acceptable with child locks, fire alarms, carbon monoxide detector, fire extinquishers, etc. We found out that before they would allow us to adopt we would have to have her in our home for at least six months. That meant at least the following August.
In December we found out that the eye doctor had determined Jaidah had a large blood clot behind her right eye, her best eye, and it needed surgery. Her Social Worker traveled to Salt Lake City to have it done, but when she got there and upon examination the clot had dissipated 85% and the surgery did not need to be done. We went to Helena to see her in December before Christmas and this was the first time Gary had met our little girl. He was instantly smitten with her. We could hardly imagine we were shortly to become parents all over again to a baby, a baby who had significant special needs. An undertaking, yes, but we both already loved her and were willing to do whatever we had to do to make her ours.
In January I got a call saying Jaidah needed urgent surgery on her little brain. She had developed a very large chronic subdural hematoma on the right side as well as scar tissue. The doctor was concerned and felt that a simple chronic hematoma could be drained through a hole in the skull but this problem was large enough that a craniotomy had to be performed to remove the large section. It was hoped that this would leave room for her little brain to grow. I went to Missoula to be there with her and her foster parents and had the opportunity to hold her and love her throughout the day before her scheduled surgery. She was so tired, and wanted a bottle but because of surgery she couldn't have one. I felt so sorry for her and just held her before they took her away. Again, we didn't know if she would live or die. This wasn't just a simple operation. It took longer to complete the surgery than expected and when the doctor came out he said it was good they had gone in, she had lots of blood and fibrous material in there. They were able to stop the bleeding and cleaned out a substantial amount of the scar tissue. This left a large gap between her skull and her brain and it was hoped the brain would begin to grow into this spot. I remember her coming out of surgery and that little bandaged head. She was puffy from all the fluids they were pumping into her and just wanted to suck her thumb. I stayed the night and was there the next day when we were allowed to sit her up for a short time in our laps. Again, I had to leave her in the hands of others. I was so ready to just take her home. About four days before I was going back to Missoula for her one month post-op visit, I got a call from her Social Worker in Helena. Her foster mom had fallen and broke her ankle and Jaidah was being sent to another home. I told her she needed to be with us, her family, I didn't want her being shifted around. The little girl had already had enough trauma in her life, she didn't need anymore. We hadn't completed our classes yet, we hadn't had a home visit, and at that late date it didn't look like it was going to be done in time. We had two different counties trying to correlate things and two different supervisors who couldn't get together in time. I was almost in tears trying to reach someone in the last hour of that Friday trying to make arrangements for a home visit. Finally I had a call from her Social Worker who said she was making the call and I could bring her carseat down to Missoula when we met at post-op. I took pictures of my home just to be able to show her we were ready and we were safe. We had Jaidah's room all set up for her with decorations, crib and monitors. Another stage of our life changing circumstances was just about to start...
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