Age 7-more new challenges and yet another diagnosis.

Here we are now, at age 7. Gillian repeated First grade. Luckily all the first grade teachers knew Gillian from last year. This year she got another wonderful teacher and has had her teacher from last year for part of the school day too. This year has not been so great. The first couple weeks of the school year were brutal. She was literally bouncing off walls-almost like she was trying to crawl out of her own skin. They had her on Prozac for her OCD and apparently that did not agree with her. It turned her into a different child! I noticed it a bit at home but once she started school we saw alot more. So we stopped it and noticed a change for the better. We began another medication and she was doing well. They are moving ahead quickly and Gillian is falling behind. It all started around December. She was doing good-had her IEP meeting and she was a little behind but not too bad-at that point we were not worried. She started wetting her pants. I attributed that to the ADHD and her attention. Thinking maybe she was waiting too long to get to the bathroom. Then come January, after winter break, she kept falling asleep in class. I was upset thinking something was wrong. It kept up so I got her in to see a doctor. They ran bloodwork and it all came back just fine. We were baffled. She had started being extra nervous-picking her fingers till they were bleeding. Her behavior became worse-more tantrums than normal. I thought she needed an increase in her ADHD medication so I phoned the doctor. They upped it and I was hopeful. No change!
Then came her Parent Teacher conference. She had fallen very behind. At that point I was very concerned. That same week I was called to bring her a change of clothes as she had wet her pants. Uh oh, I thought. It was really rough-between her behavior and the wetting her pants and now school, there was something going on. Again , not sure. It was a rough weekend following that and out of desperation I emailed the nurse practitioner at the Neurology office. As I was laying around the house trying to calm myself after a stressful Saturday I remembered I had some emails back and forth at one time with her and thought I would give it a try. I heard back not even 5 minutes after I sent the email (on a Saturday Night!). She apparently was not working in the office much, but forwarded it straight to the nurse. They called me on Monday but I missed the call. Doctor wanted to see us on Wednesday. So I went in and talked to the doctor and told her all that had been going on. She asked me up front if Gillian had been having seizures. I thought to myself "What is this lady thinking?" I had not seen Gillian have a seizure. That was just crazy.
Then she asked if I had ever seen her zone out. I told her we see that alot. She then said she could be having them-that there is a kind where they don't convulse but they stare off into space. Ah-hah! I remembered. I had read about those at one point. So the EEG was ordered. From what friends have told me and what I have read, those are hard to detect in an EEG. I was not optimistic they would catch one, and still in disbelief. When it came time to do it, I was excited to get it over and done with. I hoped they would find something, assuming we would be able to take care of it. Within about 2 minutes of starting the test, they detected one. I saw it with my own eyes and was FLOORED. I saw it on the screen and immediately asked the tech what that was. He told me that it was possibly what they were looking for. He then went to a couple of screens and turned back and confimed it WAS a SEIZURE. At first I was relieved they found it. As it went along and I saw more (she had 3-4 seizures during the 30 minute test), I started crying. What was I to think? It all became very clear. The zoning out, the falling, the sleepiness she had had, the forgetting what she learned while doing homework-all classic signs. I had no idea. I felt like kicking myself. Often we cannot tell she is even having them. One indication is when she wets herself. Sometimes she does stop mid-sentence. When we are doing homework and 2 minutes later we go back to something and she doesn't remember-we know she had one. Her eyes don't move and she doesn't even twitch. This has by far been the hardest on me. I thought I would feel better knowing, but it has been harder. Seeing her have these has been hard. Just knowing that seizure activity is happening. Knowing it is causing her delay. At this point, there is a chance she could grow out of all this. But there is a chance it could also get worse. We are on a path to find the right medication now. The first one caused her to be aggressive. She was throwing punches at me and doing things that could hurt other children at school. Its just not my Gillian. Now we will probably have to start another medication. That is hard, the not knowing.
I just want her to do her best in school. I know she has it in her. She is smart. But this monster thing is causing her issues. I HATE this. I hate the word Epilepsy. In a million years I never thought that she would have this. I feel horrible that she has had to struggle her entire life. I wish I could just take it all away. Since she has started school she has been given several diagnoses. Some I knew there was a possibility of, and others that just totally came out of nowhere. It makes me wish that when they had sent her home from the NICU that they gave us some kind of manual, or a book that would give us some insight as to what we may be dealing with later on , hence this blog. It was all so unknown. It makes me wonder what is going to be next for her, and I worry about that. At the same time, I realize we are so lucky to have her. I have alot of different emotions running through me right now. Bottom line is, I worry about her and her future. I know she has her purpose and I always wonder what that is. I see how strong she is , so she has a reason for being here. She never gives up. Even after all she's been through, she keeps going. Overall she is very happy-she always has been. I think she is pretty amazing.

Age 5-6 Kindergarten & First Grade

So she began Kindergarten. I have to admit I was so nervous, but excited at the same time. I heard wonderful things about this teacher and her expertise. She has 5 special needs kids of her very own. She is an amazing lady. On the first day of school, it was rough. Gillian freaked out. They could not get her under control. It was hard to watch it all. I stayed to see if I could get her to calm down, but I finally just had to leave and go out in the hall. I stood out there and cried. I just wanted her to be normal. Gillian was excited until we got there. She was never good in new environments and with different people. I figured it was just an adjustment period. She kept hiding under tables and such. Eventually she stopped that . I tried to volunteer in the class, but she acted worse when I was there. The teacher , again, was amazing. During the school year she surprised me that they were teaching Gillian to read. I could not believe it. One time though, during the latter part of the school year the teacher told me I needed to have her eyes checked, as she was not seeing the words. She told me I needed to put her glasses back on. Trouble was, they were broken! So I creatively fixed them until we got her to see her Opthamologist. I was thinking that she would need a new prescription because it had been a while. Imagine my surprise when the doctor concluded her exam to tell me that Gillian had 20/20 vision! She had been fooling us. She can be a stinker, thats for sure. She had been called on one day during class, and Gillian would not answer. There had been times when we would work on homework and she acted like she did not know I was talking about. I simply thought it was the ADHD again. I didn't give it much thought. She was learning to write her letters and numbers. I thought she was doing quite well, and on paper, she was.

Then the worry set in again. She was to go to another school, and ALL DAY. She would be put in a special ed class-I knew nothing about the teacher or how the class worked. It had several grades in there. I was getting use to the idea, then the school decided to make changes again. I was told Gilly would NOT be put in that class. Instead, she would go to her "home" school. She would be mainstreamed. OMG! So many questions! How would she get lunch-would she get help? How would they manage her if she started a tantrum? Would they give her a detention? I worried about her being disruptive. She was going to be put in a Class for 1st graders-ones who were academically in between kindergarten and first grade. That worked for me. I knew the teacher, Mrs Williams and was excited about Gilly having her for a teacher. She had been a kindergarten teacher at the school when my son was in kindergarten several years back. It helped to know she would go into a class where I knew the teacher. She is great. Gillian did pretty well but was not without her challenges. At first they didn't think they would be able to use the same discipline on her as the other kids, but it ended up working out. She developed OCD (Obsessive Compulsive Disorder) during that school year. Yes, another challenge. It was hard again, to be trying different drugs on her. We tried several and at first it seemed to help, but not completely. By the end of the school year, she was behind a bit, but they decided to hold her back so we really did not worry much about it. I worked with her through the summer on things to make sure she would remember what she learned. I always worry about her forgetting things. I was noticing some things she would forget but just wrote it off as her ADHD. Its so hard to tell.

Age Four-Things coming out of the woodwork

At age four it was the same as age 3, very hyper-just didn't slow down. Was making some progress in the speech area, but not too much in the other areas. Again, I was concerned.

She had many "sensory" issues. Examples are: touching certain things, certain textures she didn't eat, not liking to be hugged, etc. After much research I thought that was Sensory Integration Dysfunction. I had talked to our Speech Therapist, who has a son with special needs and had Sensory Integration Dysfunction also, and they had alot of the same symptoms. Finally after reading so much about it, I decided to make an appointment with a Neurologist. It took several months to be able to get in to see one. So, while waiting, I made up a list of things I was concerned about to prepare for that first visit. I had no idea what I was in for. In the meantime also, the preschool was setting up a "County" class for those children that needed extra help. There were several that just needed that support. Gillian was one of them. We were getting her ready for that class. At the meeting to transition her to that class, it was brought up how hyperactive she was and they gave me some information to take to our Neurologist visit. They basically told me I should look into medicating her. I started to cry, as I really did not want to do that and those medications truly scared me. It was also mentioned that she "zoned out" alot. I didn't read too much into that comment-but years later now I probably should have. She also fell alot, and of course was learning delayed.

So she began the special preschool class and it was great-the staff was well trained and it was the perfect environment for her.

At the first Neurology visit it was daunting. I presented the information I had prepared. I went there pretty much to get her a diagnosis of Sensory Integration Dysfunction and to try to get her some Occupational Therapy . Never would I guess what would happen next. First, the Nurse practitioner and doctor convinced me to try her on some ADHD medication. Something mild. It was hard but I decided to try. Then, they talked to be about Autism. I lost it. It was not what I imagined to hear. We did a CARS test (Childhood Autism Rating Scale) and she scored very high, meaning she had Autism. That was one of the hardest things I have ever heard. With support of some friends and the wonderful Preschool teacher she had, I got through it. I was convinced she was high functioning and had a bright future ahead. She quickly responded to her medication and did very well. We also got her some Occupational Therapy as well as more speech therapy through Loma Linda University Medical Center. She attended Occupational therapy for close to a year-it helped in alot of ways. I am sure she will need more in the future, though.

The next year she would be attending Kindergarten. I was so nervous, since she was behind academically. I thought it would be fitting if she stayed in preschool just one more year. If not , I was going to keep her at home a year. But there was talk of a special education Kindergarten class. Still, I was nervous.

Entering Preschool

It was exciting at the prospect of Gillian turning 3 and being able to attend preschool. It was also bittersweet, having to let her go and be away for a few hours each day. We thought it would be smooth sailing there on out.

So we get to the first day of preschool. As soon as we walked in the door and saw the other kids and she began walking around the room playing, I saw a difference. I saw a difference between her and the other kids. She acted more immature than the others. She was smaller than the others. She had a hard time. She could not sit still. I knew something was wrong. We also could tell her speech was largely delayed compared to what it should have been. So that same week I got in contact with the school's speech therapist. They did an IEP and got her set up for speech.

It helped, but there was still issues I could not quite put my finger on. The school district psychologist said she wondered why she was ever discharged from Inland Regional Center.

When they discharged her at 2 1/2, she was still a teeny bit delayed, but nothing big. When she hit age 3, it put her in another bracket, and so she showed severely delayed. We thought once she got some speech in and matured she would be fine-no worries. It was tiring and stressful-and she ran around like mad. She never stopped. At that point I thought she would be too young to medicate if she had ADHD or anything, so we never sought anything for that. So we dealt with it as best as we could, tiredness and all.

Age Two-first steps

Gillian finally began walking at age 2. We thought it would never come! We were getting worried. She does everything on her own time. It may take forever but it always happens.

At her Opthamology appointment, Her eyesight had improved! Doctor said that NEVER happens to these small preemies. So, onto glasses #2. Not that she wore her first pair much-couldn't get her to keep them on. That made it even more amazing that her eyesight had improved.

We were trying to get her to eat more solids-like little finger foods, and to drink from a sippy cup. She had "oral aversion" so it made it a challenge. We just kept at it. She finally was able to drink out of the sippy cup after much effort.

She still had her caseworker from Inland Regional Center coming and working on her developmental goals. She kept progressing then she was pretty much caught up. At just over 2 1/2 years old, she was exited from the program. We were told we could put her in preschool and all would be well. Little did we know what was ahead.

Finally getting some normalcy

As things went along we started getting on a better routine, more normalcy. We took Gillian out of the house to get some pictures taken. She also needed her first pair of glasses at 8 months old. The opthamologist told us she would probably need glasses all her life.

A few months later we made the 1 year mark. What a joyous day that was. She slept almost the whole time-we had a party for her at the park.

Once we hit the year mark, we thought we were home free. We thought it was all uphill.

She was not walking yet-just barely sitting up at that point. We knew with help she would keep developing more and more.

At age one, we had a BAER hearing test. Her hearing was within normal range! I wanted to hug that doctor! My baby could hear normally!!

First couple weeks home

After we arrived home we started having people come to the house. A home health care nurse came for several weeks to weigh her and go over things to make sure everything was going well. Although the Home Health nurse told us we really did not need her there, we felt such comfort having her check in on us. We also had Inland Regional Center come, as well as the supplier for Oxygen and the Apnea Monitor.

It was scary having her home. Just days later when she was being given a bottle, she stopped breathing and turned blue. I quickly turned up her oxygen and started pounding on her back to stimulate her to breathe. She did start breathing, thankfully. She did that one more time the week following. At that point we wanted to take her back!

Some weeks we had 3 doctor appointments, along with inland regional center coming to the house. It seemed overwhelming having to deal with it all. At the same time, we were still so glad to have her home. Gillian just kept improving and doing better all the time.

Going home soon....

Gillian was doing really well-taking her bottles well and her reflux under control. No more Apnic episodes and was continuing to gain weight. She was very alert and active. The nurses would take her for walks all over the NICU-I would go to visit and she would not be there so I would have to go hunt them down. It was funny actually. Gillian loved it-she has always been social (well, most of the time). Then on 12/14/02 we heard what we wanted to hear. If she gained weight that night she could go home. We were beyond excited. That night she did indeed gain weight! That sunday morning, 10 days before Christmas, we got to bring our baby home. As we were leaving, one of the nurses called over the loudspeaker in the NICU that Gillian was going home. We were met at the front desk by many nurses who took care of her during her stay. I bawled the whole time. As happy as I was to be finally taking her home, it was hard saying goodbye to the many friends we made. The nurses came to be like family to us and were such a huge support. She was 9lbs 14 oz upon discharge.

She had the following discharge diagnoses:

Hyperglycemia, resolved

HYpotension, resolved

Anemia status post multiple packed red blood cell transfusions

Hyperbilirubinemia, resolved

Hypochlorenemia

Hypophosphatemia

Osteopenia of Prematurity

Hypoproteinemia

Oral Thrush

Persistent Neutropenia

Retinopathy of Prematurity

Hearing Loss

And now onto another journey...............

4th Month in the NICU

There was now some talk about taking her home. That was music to our ears. It had been such a long journey. We began our "discharge teaching" to prepare to bring her home. Then we had yet another setback. ugh. We went to visit her one night and the nurse had been giving her a bottle. Gillian had been burped a couple times then began choking and it looked like she was going to throw up. They had to really stimulate her to get her sats back up. They almost had to code her. It was a scary moment. I am honestly glad we were not there to see all that. The Nurse practitioner then told me that she would be able to go home as long as we didn't use her for the Thanksgiving Turkey (haha-she was REALLY fat).

Another setback. Gillian began having episodes of Apnea. They believed it was due to reflux as it happened at feeding time. She would require vigorous stimulation to get her breathing again. They did a sleep study to pinpoint exactly what caused the Apnic episodes. They began her on a couple of Reflux medications that seemed to help. They did a PH Probe to determine how bad her reflux was. Test results showed it was mild to moderate.

She would not pass her hearing tests-she had 2 different ones. So onto another test. sigh. The BAER hearing test showed some hearing loss. We were to follow up in 6 months.

3rd Month in the NICU

Gillian had some Pneumonia again and had to be treated. Despite the pneumonia she was still her spunky self. She began doing much more breathing on her own and they were able to turn down the levels on the ventilator. There was hope that she would be off soon.

She was officially at the 5lb mark, finally! They confimed she had "Retinopathy of Prematurity (ROP)" and needed laser eye surgery. If she did not have that done there was a chance she could go blind later (like Stevie Wonder). There was a good chance she would be nearsighted later but at least she would be able to see. She was under heavy sedation and they had to increase settings on the ventilator. It was hard to see.

On 10-31-02 she pulled out her breathing tube. They put her on Nasal CPAP and she just flew! It was amazing. The only thing was that the little prongs in her nose made her nose bleed.

Several days later she was put on Nasal Cannula-just some supplemental oxygen. The nurses totally surprised us with that-they did not tell us. When we got there to see her we noticed it. It was very emotional-we waited a long time for that. We were able to hear her cry for the first time ever. She was able to take a bottle for the first time, another milestone. One of a preemie's largest challenges is learning to "suck, swallow, breathe." It was hard for her to learn how to do this, and she had to be alert enough to take the bottle as well. She was now at 6lbs 9oz.

2nd Month in the NICU

Gillian developed a Staph infection and her main IV line had to be pulled. They had to begin pricking her heels to get blood for what they call "blood gas" tests which were performed on a daily basis-sometimes more than once per day. It checks the baby's oxygenation levels and is an important test. It hurt to know they had to prick her so much, but there was no way around it.
At 35 days old she weighed 1lb 13 1/2 oz. I remember being so excited about her weight gain.
Every week, my son Aidan got to go see her. The nurse surprised him and let him hold Gillian (as seen here in the picture). It meant so much to him. He was very protective of her.
Her chest x-rays showed "a little wet" and they had to give her some Lasix to get rid of the fluid. This was also a constant battle that I remember. It was because her lungs were so immature.
Gillian's oxygen levels were not the greatest -she was not taking her own breaths so much so they started giving her some Caffeine to stimulate respiration. That is also something they use to wean them off the ventilator.
She reached a milestone of 2lbs! We were thrilled. She was able to wear some tiny preemie clothes that I had purchased online. They were so small they looked like doll clothes, but had places for all the wires.
At one point in her 2nd month one of the Neonatologists was talking to me and mentioned how great Gillian was doing, considering she was one of the sickest babies on the unit (back when she was doing so bad).
One funny thing that is SO Gillian is that the janitor was in vacuuming and she did not like it one bit. Those vacuums they use in the hospital are so quiet too. Her oxygen saturation levels were dropping so they had to tell the janitor he could not vacuum because it was upsetting Gillian!
She developed E-Coli in her endotrachial tube (the breathing tube). They caught it early and were able to treat her.
Her weight at the end of 2 months was approximately 3lbs 8 oz.

The First Month.

The first week, she had what is called "the honeymoon period." She was stable, everything going better-no huge obstacles. We were optimistic. On the 7th day all of that changed. We received a call that she was having a hard time, and was put on a High Frequency Ventilator (HFV). It works differently than a regular ventilator. She had also developed a yeast infection in the bloodstream (Sepsis) and was very sick. They did not know if she would make it through the night. During that time she also had a Pulmonary Hemmhorrage. The nurse firmly told me that it was not a good thing, and that scared me. At this point, we were taking things hour by hour.
Moving on to about the 2nd week,her blood counts were good and the Pulmonary Interstitial Edema (PIE) looked much better. Then the bad stuff started again. My son started kindergarten. On his 2nd day I quickly ran down to the hospital for my morning visit to find the Respiratory technician there hand-bagging Gillian with oxygen as her oxygen sats had dropped down really low. They gave her surfactant and she improved. The Neonatologist was at her bedside and told me we needed to talk. I was sitting in the rocking chair at that time, and the Chaplain walked in. It all looked horrible to me. I started hyperventilating and I passed out. The neonatal nurses told everyone (other parents) to leave the room. They kept putting thoise smelling salts under my nose and talking to me, to try to get me to wake up. The nurses and neonatologists placed me on the floor and a pillow under my head and took my blood sugar. After I came out of it they gave me some juice and put me on a stretcher and took me to the ER. It was hard having to relay the story 3-4 times to all the different doctors, student physicians and nurses in the ER.

As time passed, Gillian started to look more and more like a little baby. She was constantly changing. Gillian did NOT like her diaper being changed-her oxygen sats would always drop. Probably because she was poked and prodded so much already. She also recieved many blood transfusions over her first month.

I was always amazed at Gillian's determination. She was always moody-everything had to go her way. She has been feisty since day one. We rejoiced over every small improvement. It was always "2 steps forward and 1 step back."

Head ultrasounds looked good-no brain bleeds. What a blessing that was.

I spoke to Barb Mordue, the Neonatal Nurse Practitioner (wonderful lady) and she had a plan for Gillian. They had such a hard time with her being on such a large amount of oxygen that they needed to do something. She had already been on 100% oxygen for weeks. The proposed that they start her on Decadron, a steroid. It would reduce inflammation of the lungs and then she would not require so much oxygen. At this point they warned me that it could cause some problems in Neurological Development, slower growth, etc. Within hours of administering the first dose, she started improving. It was miraculous and our prayers were answered. She had become much more stable and they were able to turn down the oxygen level.

The following week when they were changing her oxygen mask and carefully removing the tape from her fragile skin, the tape took some of her skin with it. It left an abrasion that looked pretty bad. Needless to say I was freaking out. Other than that, there was some exciting news. They had taken her off the HFV and put her on a conventional ventilator, which meant I would get to hold her for the first time ever. Gillian had become more active and was fighting the ventilator so they had to give her something to paralyze her. She was loosing some weight because she was moving around so much.

I got to hold Gillian for the first time when she was 1 month old. At first I was really afraid-she was so tiny and fragile. It was a great experience-it felt like a dream. The nurses around me were excited too. She had an air leak in her ventilator tube and she was making some cooing noises. Her eyes were open really wide looking around. Her oxygen saturation levels even went up. The "skin to skin" contact with preemies has been proven to help them with growth and development.

How it all began........

It all began around August 8th 2002. I awoke to find my membranes had ruptured. We immediately went straight to the hospital, Loma Linda University Medical Center. They confirmed that my water had broken and that I had started to dilate. I was administered a
steroid injection (Celestone) to help mature the baby's lungs and also an antibiotic for infection. The Neonatologist came and spoke to us about all the possible things the baby could have wrong with her, and what she would endure in the NICU stay. It was hard on the young doctor who was speaking with us, and you could tell he did not want to be there. I ended up going into labor on august 10th. The nurse had come in and asked if I had felt any pain, and I did not. I thought it was the baby moving. It turned out to be contractions. They got more and more painful. Before long, they were unbearable. They checked me and her legs were coming out. The nurses began panicking and telling my parents to get out of the way, and quickly wheeled me down the hall to the operating room. Within minutes, I was put under anesthesia and about 10 minutes later, at 1:23pm my baby girl was born. Robert had just left to get some lunch and was not there when they wheeled me away. My baby weighed 603 gms and was 11 1/2 inches long. Her apgar scores were 1 & 6.
Not imagining we had to name our baby so soon, Robert and I thought of some names and agreed she would be called Gillian Autumn Christopherson. Her actual due date was November 30th. She was 17 weeks early. Dr Rudolf told me right away that he could make no guarantee, and that she had a 50/50 chance. Gillian was immediately put on a ventilator right after birth. I remember Dr Rudolf telling me it took them a while to get her set up. They had an NICU team there during the birth and took her right away. I was not able to see her until the following night. After I saw her for the first time, I was depressed. It was the most horrible thing I had ever seen. She was so tiny, the size of a pencil. She had all kinds of wires hooked to her, and I could barely see her. Her eyes were fused shut. I remember talking and seeing her arm kind of wave around... the nurse told me that she recognized my voice, and I was able to touch her. I went back later that night to see her again. I told myself that I had to do it, despite how depressing it was. It took alot of effort too, as I was in horrible pain. The second visit was a bit better,and I was able to talk to some of the doctors who were making rounds that night. They had a nurse at her side, Jayme, who ended up being one of her primary nurses. This was the beginning of our 4 1/2 month NICU journey.

Born on 8/10/2002

weight: 603 grams (1lb 5 oz)

Length: 11 1/2 " long

This is her with her brother, she was approx 2 weeks old in this photo.

A Long Journey

This whole prematurity thing has been a long haul. I am going to be blogging about my journey here. I am hoping this can be of help to somebody. Its hard having a preemie, and even harder not knowing what is ahead. There are many things I wish I would have known ahead of time.
I wish I would have been sent home with a manual, of what was in my daughter's future. We have dealt with many obstacles. Just when we get through one thing, something else happens.
This is our story, a work in progress.