AS I LOOK BACK...
                        by Holly Anderson (Sam's mom)

On March 26, 1999, I found out that I was six weeks pregnant. I was thrilled and nervous. I had always wanted a baby and now it was going to become a reality. My pregnancy went pretty well all considered. I had a few weeks of bed rest and most every symptom that comes with pregnancy. I was very cautious all through my pregnancy on what I did and put into my body. I read all the books and followed them closely.

I had five ultra sounds all together. One at seven weeks to see if there was a "strong heart beat" because I was cramping alot, one at eighteen weeks, one at 27 weeks, a false alarm, one at 37 weeks because she was sideways, and one right before surgery in hopes that she'd turn. I ended up having to have her Cesarean.

It was heartbreaking to me because I was so ready for the whole experience, and the thought of surgery and having a baby after it scared me. Nonetheless it was a wonderful experience even if it only took five minutes! The reward for 40 long weeks of watching your body go through so many changes, physically and emotionally is so unbelievably worth it. When they held my baby up over the curtain and said she was a girl, the second I laid eyes on her I was in love. My little Samantha was finally a reality.

I got to kiss her before they took her away to the nursery, my husband went with her. It was such a strange moment. I just went from Holly to Mom in less than 5 minutes. I watched her being pulled from my body, hearing her cry, kissing her tiny forehead, watching her being taken off to the nursery and wanting to go with her, but having to lay there to be put back together, it was so surreal. About 45 minutes later my husband came back to the recovery room to see me. He said that they said her cry was weak and that she had a smaller jaw than normal. "But everything is all right, right?" I said. About a hour later I got to see Sam again. I got to hold my little peanut for the first time. She was so beautiful. She had such tiny little features and beautiful skin. I couldn't believe she was mine!!!

They took her back after about 15 minutes to check her over again. The next time I saw Sam she had a tube in her nose to be fed through. It was hard to see her like that, with the tube and tape across her cheeks. They told us she couldn't suck and that for right now she'd have to fed this way. I had planned on breast feeding, so this was emotional for me for many reasons. I was scared that there would be something substantially wrong with her. What did I do wrong? There were so many questions going through my mind.

They didn't know what it was. They had her hooked up to monitors and she was kept in a tiny plastic box in the NICU. I was able to see her in my room for about a half hour after each feeding that day. She didn't get to stay in my room that night, I didn't sleep at all. I was determined to get out of bed the next morning so that I could go see her.

My roommate got to have her baby in our room. I had to hear him cry all night and wonder why my Samantha couldn't be with me. Not knowing what was wrong was horrifying. I didn't take any pain pills, because I didn't want to be sleeping in case something happened. I had planned on having her in my arms that night. It was a cold reality and a long lonely night.

The next day I was up as soon as the doctor okayed it. My mom helped me shower, and off to see my little girl I was! It was hard seeing her in that little box, I so badly wanted to curl up next to her. It was hard for my husband and I. We didn't know what to think. For the next two days they kept running tests. I used the hospital breast pump, I would have rather put matches to my nipples, but I wanted to do every thing I could for her. I was allowed to bring Sam back to my room after her feeding. It was nice to snuggle her and my mom and I could sit on the bed and read to her.

On the third night I went and got Sam at about eight and brought her back to my room. We were alone that night and I remember how good it felt to just have her in my arms and to be able to tell her how much I loved her. She seemed so relaxed. The nurse came and got her about an hour later and we said good night. The nurse came back 10 minutes later and told me there was a problem. Her oxygen level was low and her lips were blue. I asked why and they told me sometimes they just get tired of breathing. I didn't know what to think. I remember calling my husband and mom and just crying. Sam never left the nursery after this.

On the fourth day we heard from an ENT (ears, nose,   throat) that she had all of her parts and the genetists told us that her ears were too low and her eyes too wide apart. The whole time he was saying this I was in disbelief that the words were actually coming out of his mouth. I couldn't help but feel defensive, this was my baby we were talking about. Who has "perfect" features and who decides what is "normal", and doesn't anyone have any tact? The child in me was biting her tongue. I wanted to start criticising the doctors features, just a bit. I happen to hate the label "normal". A personal pet peeve of mine. For those I know personally who label themselves this, I want to be as far from normal as possible.

I will tell you what is beautiful is. Samantha, and nobody who has had the privilege of meeting her would tell you anything different. They had a speech therapist come in to teach me how to use the haberman feeder. It took Sam about 10 minutes to take 10cc and then the poor little girl would pass out from exhaustion. Each feeding I would give her as much as I could with the bottle and then the rest would be through the Tube. I was lucky to have my mom there with me. We saw Sam turn blue twice over the course of two days and every time her monitors would go off my stomach would drop.

They told me on the fifth day after I was finished holding her while they did an ENG that the genetists had also heard a heart murmur. Why not. They thought she was having seizures because her eyes rolled back into her head when she was tired or under a bright light. They ran a chromosomal test, did an MRI because they said she could have brain damage, and did an ultra sound of her major organs. They didn't find anything to be wrong with her heart or any of her organs thankfully. The other tests results would take awhile. On this day we opted to have her transferred to CMH in Chicago. This day was the most emotional day so far. We were getting closer to getting an answer and so afraid of what we might hear.

I remember signing papers for her release and agreeing with my husband this was the best thing. We walked back to the NICU and there Sam was, in this large box with all of these lights and knobs , waiting for her mom to say goodbye. I can't explain why this contraption scared me so bad, but it did. I am actually crying thinking about it now. I was so scared for her, she should have been going home, not getting into an ambulance. Chuck, my mom, and I were very fortunate in that we got to stay at the Ronald McDonald House next to the hospital. It would have been a great place to stay under different circumstances. We had to sign some papers before we could get on our way and my mom ran to my house to grab me some clothes. When she got back we left for CMH.

It was about an hour drive and it was pouring rain. My mom followed Chuck and I. It was the first time I had been outside in five days myself and I remember looking into the back of our truck to see the empty carrier. I wasn't able to drive because of my surgery or I would have driven my mother. My mom, driving downtown Chicago in the pouring rain at night wasn't a good idea. Some how we all made it, I was surprised my mom could walk she was so frazzled.

When we arrived at CMH we immediately went to see Sam. We found out which room she was in and headed for the sink. There we had to wash up with iodine and put on a hospital gown before we could enter her room. The first thing Chuck and I saw was a tiny 1.5 pound baby with a ton of tubes coming out of its body, we immediately started to cry. The room was filled with babies in tiny steel cribs and parents with worn out faces. There were lot of machines and buzzers and flashing lights. The whole ordeal was overwhelming. I couldn't believe we were here to see our daughter. We took a deep breath and turned the corner and there was our little peanut.

When I first saw her I felt like a horrible mother, I wanted to crawl in her crib with her, hold her, love her, tell her everything would be okay. We were able to hold her for a while, it was so hard looking into her beautiful dark eyes wondering what she was thinking, not knowing what to think ourselves. There were only two people allowed at a time so, after a while Chuck left and my mom came in to sit with Sam and I. We stayed for about half an hour and then said good night. I didn't want to leave her, I felt like I would never see her again if I did. The night was a long one. Besides the emotional part there was also the getting up every three hours to pump. I pumped, mom labeled, and Chuck had the duty of putting it in the fridge. In the morning we talked to one of the doctors.

Since we had gotten there right before the beginning of the Thanksgiving Holiday they wouldn't really do any evaluating until Monday. The main floor doctor gave us a few somewhat encouraging words but nothing other than speculation. That at first glance of our daughter she really felt that there was a whole little person in there staring back at her that just couldn't make much expression facially, but wanted to. That she seemed to know what to do, but couldn't. One decision was made, that she needed an alternate way to feed. I opted for the G-tube because I could no bear to stick a tube down her nose every time I needed to feed her. I decided that the G-tube would be a more positive way to feed her. I set up the surgery for Monday.

The next four days were long and uneventful medically. Mom and I spent most of our time at the hospital with Sam. I wanted to be the one to feed her and change her diapers, to be her mom. We read to her and my mom crocheted her a hat. Tom came on Thanksgiving, which the three of us spent at the Ronald McDonald House. The dinner was provided by families that had once been in a similar situation themselves. This was the first time I had talked to some of my family members about what was really going on. I tried not to tell anyone, until we knew for sure, up until this point they all just thought she had a minor swallowing problem. I felt I had to say something, after all it had been almost ten days and they were beginning to wonder. I told them that she would be having surgery that Monday to have her G-tube placed. After the long weekend, things finally got started .

Monday was more stressful than words could describe. The reality of my little daughter having surgery was terrifying for me. The doctors described the procedure to me, I had to sign all the papers that listed the risks of the surgery and anesthesia. There was also a risk of the need for a tracheotomy, because her airway was so small, they were afraid it could swell shut. They told me that they would have to place an air tube in her throat without anesthesia to make sure her airway wouldn't collapse. Mom was with me while we tried to comfort Sam before they took her. The last feeding she had was at midnight and it was now 10 AM. Finally the doctors came and put her in an incubator type box and we all wheeled her down to the operating area. They told us the surgery would last about an hour and that they would come get us so we could be with her in recovery. I kissed her goodbye and they wheeled my now less than six pound world into surgery.

Mom and I sat in the waiting room for what felt like eternity. An hour went by, another half hour, I was starting to feel sick. Mom and went looking for the doctors, when we finally found them they said they had already taken her upstairs for recovery. She didn't need a trach during surgery and they were hopeful that the medication would keep the swelling down. When I saw her her mouth was bloody from the air tube, but she was okay. They were giving her morphine (no pain, but not very comforting to hear) so she felt okay. I saw her tube for the first time. It was disheartening to see her little belly all of 12 days old with a 3 inch scar on it. The doctors did do a nice job, but it was unfortunate that it was needed. That same day they took her down for another MRI which was great except they needed to give her a sedative so that she would stay still. I was worried about her being over medicated. The day was long, but at least we were finally getting closer to taking her home.

Tuesday Chuck came and we talked to the doctors. They tried to answer some of our questions, they still really didn't know anything for sure. I got to give Sam her first bath that night. I was nervous, it was the first bath I had ever given to a baby, not to mention, in front of people.

On Wednesday the genetists talked to me and said that as of now her MRI and ENG seemed okay. That they felt she had a slight case of Moebius Sequence and that they thought she'd be able able to lead a pretty normal life. Finally some good news!!!! Thursday all the doctors concluded that they were 95% sure that she had Moebius. I learned how to change and care for Sam's G-tube and we were told they would discharge her sometime on Friday. That night we had to do up all of our laundry and pack up our stuff. Friday seemed to last forever, a lot of waiting around. At about 3 that afternoon mom dressed her up in her going home outfit and we were off!!!!

I was excited to get home. It had been fifteen long days since I'd been there, I missed my cat and my bed, but most of all I just wanted to relax on the couch and love my daughter. It was great to have her home, but now it seemed like the realities of everything all set in at once. The whole ordeal was so emotionally draining and my body was so worn out. It was nice not to have the noisy monitors around, but it was also scary. I felt like she still needed it. What if she turned blue and I didn't notice soon enough? It was great to be able to sit a comfy familiar couch and snuggle with her, this was what it was supposed to be like.

Feeding her was difficult. A G-tube consists of a twelve inch tube which is placed into the abdomen and is held there by a marble sized balloon, until it heals when it is replaced with a button. It is held in place with hard plastic that covers their entire little belly. You have to change this once a week, which involves tearing it off their skin, checking for skin breakdown and replacing it with a new huge piece of hard sticky plastic. I was lucky to have my mom do it the first time while I cringed. So, you have a tube hanging out of your babies tummy that you swear you are going to snag or accidentally pull out, which makes you more of a nervous wreck. You hook up a syringe to the end of it and give the feeding through it. This was not If she would cry the milk and all of her stomach contents would begin to come back out the tube and run all over. over.

The syringe had to be higher than her stomach so you had to pin it on something, which made you immobile. It was impossible to hold her and feed her at the same time. So she would cry. The doctors said to just feed her in her crib. Yeah right, this was the most precious bonding time and she and I were not going to miss out on this. I had to feed her every two hours, so basically I never slept. The first feeding of the night went well, considering she was sleeping. The horrible part about this tube was that it was impossible not to push a whole lot of air into her stomach. The air of course would give her a stomach ache so it seemed just as soon as your fed and calmed her down, relaxed enough that you could maybe sleep, it was time to do it all over again.

The second feeding was horrible. She screamed, the milk came out, I started crying, I couldn't do it. My mom took the next the feeding with Tom. We found it was a two person deal. One to hold her and one to feed her. This, of course, wasn't a fix-all because mom   Tom were going to have to go home. My mom used to be a paramedic so she came up with the idea of hooking up a IV bag.

When the Nurse came to check on us I asked her if she could get us some to try along with an IV pole. (...by the way, buy a pole...) I bought a used one for $40.00. The insurance company we had charged us $36.00 a month to rent one. They are called gravity set bags and hooked up perfectly to the extension tubes. Now I could hold her, feed her at the correct pace, and if need be, I could stand up.

Why they didn't send us home from the hospital with this I will never understand. I use a new bag once a week, I just rinse it out with hot water and hang it back up. Now that the feeding were under control I could finally really get to know my little girl. Sam was now 3 weeks old. Our days were pretty normal, we spent hours staring at each other. Probably wondering what the other was thinking. I hoped that she knew I was her mother, that I would do anything for her. I remember wondering if she was going to be okay.

When you first read about Moebius and all it many symptoms and look at your beautiful child you are in disbelief. When they tell you that your child may have brain damage, the thought of the possibility never goes away. And it is just one of those damn wait and see things. I felt in my heart that she was staring back at me they same way I stared at her. She was beautiful, perfect skin, dark eyes and little rosy lips and know matter what the future held for her, she was my little 6 pound world and I didn't want to fail her.

Time went by, the feeding got more routine. She had problems with her own secretions and would choke at times. The nasal aspirator went everywhere with us (and still does). There were times when I would be clearing her nose and throat at the same time for what seemed like minutes. I never really panicked, but I never left her alone. She slept in a bassinet next to my bed. I had her on an incline and wedged on her side. I peeked in at her so many times during the night she probably dreamed she was on a boat because I would tip her towards me. She would cough throughout the night and if she didn't I didn't get any sleep.

Sam only slept about 6-8 hours a day, so did I. That's night and day. She would take the minute power naps now and then if you put her down she would wake up. I remember reading about some of the other children with Moebius that had odd sleep patterns also.

At about three months Sam started to have night terrors. She would wake up hollering, not just screaming. Eyes wide open, shaking, and making a noise louder than you could believe. They would last 20-60 seconds, then she would usually go right back to sleep. She did this close to everyday until she was about 8 months. That scared the hell out of me at first.

The first time she did it I was carrying her to bed and she started to holler- like bloody murder and all I could think was that I had snagged her g-tube on something. Other parents of kids with moebius have reported having night terrors also, but they didn't start until their toddler years and continued to their teenage years. I am hoping Sam doesn't get these again.

The middle of January we went to CMH to have her tube replaced with a button. This was a a long awaited day. I got her all dressed up for the occasion and took pictures. When we got to the hospital the doctor came in asked me if I wanted to be in the room. I was a little uneasy about the whole thing but I wasn't going to leave her. Remember how I said I always felt like I was going to accidentally pull out her tube, yeah right! To my amazement he laced the tube between his fingers and gave it a a hard tug! Sam screamed, I cringed and he didn't even make a face! There was a ball the size of a marble holding it in her stomach, so rest assure, you couldn't accidentally pull the tube out. He stuck in this sharp ice pick like thing to clean up the stoma and to get the size button he needed.

The button wasn't as flush to her skin as I was hoping but it was an improvement. The button had a tube that went down into her stomach with a balloon attached to the end that you had to fill with water to hold it in place. I have to check it every week to make sure it is full and turn the button once a day to make sure that it doesn't adhere to her skin. I can do this at home now, it needs to be replaced every 4-6 months. All of a sudden it will just pop out because the balloon has broken. Sam handled the day well considering. She is such a little trooper.

When Sam was about three and a half months we decided to try using the Haberman feeder again. I started by giving her 10cc with the bottle and the rest through the tube. I would pinch her cheeks with my index and ring finger and support her chin with my middle finger to help her create a seal. She seemed to have no problems whatsoever. I continued giving her 10cc's for about a month with encouragement from her pediatrician. Her lungs sounded great and she showed no signs of distress. I upped the amount I put in the bottle to about 30cc and Samantha was fine. She looked forward to her bottle, so forward that I would have to start the tube feeding before the bottle so that she felt somewhat full or she would get upset to say the least. I continued this until her six month swallow study.

She never showed any signs of aspiration. No choking, coughing, no blue or redness in her face, absolutely no signs of distress only a eagerness towards the bottle. So when we went to CMH for her study I walked in confidently with a box of rice cereal and a bottle full of formula. They put her in front of the Xray machine, mixed some barium into her bottle and we watched it go down. You could see it going into her stomach and into her lungs. Although it was only a few drops she was at a high risk for pneumonia. We had to quit the bottle and strictly feed her through the tube. I was only to dip her pacifier in the formula so that she could have a taste.

We were heartbroken. I truly thought we were going to hear great news. I had to feed her at the hospital before we came home and she started screaming for her bottle. Her bag started overflowing from her stomach muscles tightening up and soon Sam and I were covered in stomach contents. Now we were both crying. The next few days were hard but soon she forgot about her bottle and things got back to normal. We had a minor set back but I knew we would get through it and that my little girl was going to be able to eat.

At about 5 months I started letting Sam sleep on her back in her bassinet, still elevated. Babies are usually able to roll to some point by this time, but since Sam wasn't quite at that point and she still fit nicely in her bassinet. She had a problem holding her legs up against gravity, so I would roll up receiving blankets and stuff them around her to keep her legs together, where they should be.

She started having developmental, occupational, physical, and vision therapy about this time. At 5.5 months Sam could roll side to side. She was taking an active part in her environment. Sam loves music so I would place her music box different places around her to try to get her to turn towards it. She mouthed toys, toes, whatever she could stuff in her mouth. At about 7 months she mastered the art of clapping. She would laugh hysterically, her whole face would turn red.

When Sam was 9 months old we took her took CMH to see some genetists that had seen other children with Moebius. They gave her an exam and said she seemed to be very aware of her surroundings and they gave her a good prognosis for what seemed to be a bright future. They thought she had more facial movement then the other children they had seen. Some of her symptoms were atypical of Moebius so they wanted to rule out another possible syndrome before they said Moebius for sure. We had a blood test done that day and three weeks later they gave us a 95% diagnosis of Moebius. They told us it was not genetic and that we need not worry about the possibility of having another child with moebius. I was so glad for Samantha, one of my first thoughts when they first diagnosed her was wether or not she would be able to have children if she wanted without passing this on.

At 9 mo. she could hold her head at a 90 degrees while on her stomach but she couldn't extend her arms. I used towel rolls to support her under her chest to help her out. It really helped to strengthen her neck. Soon she started to say 'mama', and at 10 months she could roll over. She now slept with me in bed, I can't say I didn't get my money's worth out of that bassinet. At 11 months she could stay in the sitting position after you sat her up and a few weeks later she could sit pretty stable and by herself.

She was now a year old and scheduled for eye surgery the day before her first birthday. The surgery made me nervous, but it went very well. She was a little uncomfortable at first but by the end of the day she was calm and very interested in her surroundings. We use to tease that she probably thought she has two mommies instead of one. She had no problems with infection and the next day she seemed to make instant improvements in her movements. She started army crawling and could get into the all fours position but wasn't quite ready to make a move.

By 14 months she used her head on the floor for support to crawl on all fours. I swore she was going to wear off her hair. She could stand up holding onto the couch for support. Soon she could crawl with her head up and by the end of January I had her crawling up the stairs. She has made so many improvements. In April she started cruising on the couch and pushing her walker all over.

In May she went for her swallow study and we found that she could eat pureed food without aspirating, but she was unable to have thin liquids. I am able to feed her one tablespoon of baby food with each tube feeding which is about 3 times a day. I am lucky if she will take a few spoonfuls at a time but it is a start. She doesn't like the texture of some of the foods but really doesn't mind stuff in her mouth too much. She seems to like squash and sweet potatoes,.....go figure.

She is now 19 months old (June 2001) and there is no stopping her. She pushes her car   shopping cart everywhere she needs to go. She can stand independently but has only taken one or two steps.

EDITOR'S NOTE:
Sam is now walking (as of September 2001)and likes to 'play' the piano.

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