My Story...

Brittany Leigh Griffin

December 15, 1997 - November 30,1998


After 7 years of tests, surgery and trying, Greg and I finally got the call, you are pregnant.  We were so excited, we were finally going to be parents.  At six weeks, we had the first ultra sound to confirm everything was ok, sac – check – heartbeat check – WE DID IT  !!!!  I fell in love at that moment.  I could not believe that at 6 weeks the baby, our baby already had a heartbeat.  What an amazing miracle.  They printed off a picture of the ultra sound for us so that we could take it home. Our first of many pictures of our little sweetie.  The next few weeks were almost to good to be true, I still could not believe that I was actually pregnant.

September 24th, 1997, we had an appointment for an ultrasound.  I could not wait.  We were hopefully going to find out if we were having a boy or a girl.  We were both SO excited.  The technician pointed everything out to us and assured us everything looked fine and as it should be.  What an amazing experience to be able to see your child before they are born, to see them move and to see their heart beating, both Greg and I were so over whelmed with so many emotions, then Lisa asked if we wanted to know the sex of the baby.  YES, YES we want to know.  Then she said the words, you are going to have a baby GIRL.  Oh my GOD, a baby girl.  Greg was so proud, he went to work with the ultra sound pictures in hand and was asking, “who wants to see a picture of my daughter”.  I will never forget that moment, ever.

 A baby girl, Brittany Leigh, that is her name.  I wonder who she will look like.  Oh we were so happy and so excited.

I went and picked out paint and a border for Brittany’s room.  I looked everywhere for Precious Moments borders and accessories.  They were all very boyish.  I was so discouraged for I had wanted so badly to have the theme for her room to be Precious Moments.  I finally picked out a light yellow paint and a patch work heart border for her room.  It was perfect.  I bought a ton of Precious Moments material with all intentions of making all of her blankets and wall hangings for her room. I could not wait until it was done.  It was going to look so sweet. I was in my fifth month and still had not felt Brittany move around, a flutter here and there, but nothing substantial and I was getting nervous.  I went to the doctors and had them check her heartbeat.  It was there.  I was so relieved.  The doctor said that it was because my placenta was in the front, which was blocking the majority of her movement. 

On October 10th, 1997 we went to have another ultra sound at a place called ”The Stork Connection”.  They video tape the ultrasound and give you a copy of the tape and a bunch of pictures.  It was so exciting.  Brittany was moving around like crazy, it was so amazing to see her moving all around, especially since I could not feel her doing so.  They also confirmed that Brittany was a Brittany and not a Brandon, which was going to be her name if she was a boy.  What an exciting day that was. 

All went well until December 11th.  The doctors admitted me to the hospital I was at the end of my 30th week with pre-eclampsia also known as toxemia.  My wings were “clipped” so to speak, I was to be on strict bed rest for the rest of my pregnancy.   They got me more or less stabilized and I was to remain in the hospital for a few weeks then off to home to be on bed rest.  Greg left to fill out some paper work at work because I was going to be out for the rest of my pregnancy.  Well before you knew it, I took a turn for the worse and they were taking me down for an emergency c-section, Brittany was breach and they did not want to induce me and try and turn her, for the fear I might not make it.  Greg came in as they were taking me to labor and delivery, the car would not start so he came back up to the room.  Thank GOD for that, because I do not think I would have done too well by my self.  I was 31 weeks to the day.  Once the incision was made they allowed Greg to come into the operating room.  They pulled Miss Brittany Leigh Griffin out feet first at 12:16 pm on December 15th,1997.  I heard her cry, they brought her over to me and she was wrapped in a blanket with a hat on her head, she was so tiny and off they took her.

The next day or so I do not remember much. I remember a few days later I went up to see her, and I could not believe how little she was.  She still had a lot of fuzz on her and Greg called her his little were wolf, are those terms of endearment or what?  He was so wrapped already.  She had a head full of hair, so soft and silky.  The palm of her hands were the size of Greg’s thumbnail and her feet about the size of his thumb.  She looked just like her daddy, doesn’t that figure  :0).

Brittany Leigh Griffin, our daughter was here 9 weeks early and really tiny.  Brittany weighed in at a whopping 3 pounds 1 ounce and was 14 inches long.  She scored a 7 and a 9 on her APGAR’s.  The doctor’s told us that she did really well on her own at first but then they had to intubate her because her little lungs could not do it all on their own.  They were still too premature even though they gave me steroid shots previously.  They gave her surfactant, which helps the lungs to stay open and not collapse.  Brittany had a heart murmur, which they gave her medicine for that as well to close the valve.  Brittany was jaundice and needed to be under a special light , they had a little mask over her eyes so it would not hurt her eyes, we called it her beauty mask.  Brittany had I.V.’s feeding her sugar water because she was so tiny.  She had I.V.’s and tubes and monitors hooked up all over the place.  What a scary experience that was.  An alarm would go off and we would freeze, the nurse would come over and shut it off and explain to us what it was.  Brittany had apnea, which was common for premature babies, and her heart and breathing would stop.  It was really scary.  The nurse would tell us to rub her back and she should be all right.

It was 12-19-97 and it was the day I was to go home.  I was so sad, I kept crying.  I tried to tell the nurses that I wasn’t feeling well and that I had to stay.  They said I was fine and that I could call and come see Brittany any time night or day.  I could not believe that they were sending me home without my little baby girl.  We went up to see her before we left and I was so surprised, she was extubated, but they had her on C-PAP, which helped give her a little boost of oxygen so she would not tire out as easily, and they had taken out one of the I.V.’s , the photo therapy light was off as well and we could see her sweet little face because she was not wearing her “beauty mask” .  The heart murmur was gone too.  Today was the first time I got to hold Brittany, what a feeling that was.  I was actually holding our daughter.  I never thought I could love anyone as much as I loved her.  Finally Greg said we should go home and tend to some things.  I cried the whole way home.  Greg and I got home and immediately called the hospital to see how she was.  She was doing fine.  We took care of some things and went back up to see Brittany that night.

12-20-97, Greg got to hold Brittany for the first time today.  His face beamed with pride and so much love.  Brittany did not have the c-pap on so we could see her whole face.  I still could not get over at how tiny she was. They started Brittany on breast milk today through a feeding tube in her little nose.  She had 3 cc’s every three hours which is about a teaspoon and a half.  Greg and I stopped at “Babies ‘R’ Us” on the way home and bought Miss Brittany some preemie clothes, they were so tiny and cute.  I could not wait to go home, wash them and bring them up to the hospital.  They moved her to an isolette so that she could have some peace and quiet, because preemie babies get stressed out very easily.  It still seemed like a dream that she was finally here.

The next few weeks were very busy for us all.  We were going back and forth to Boston, I could not drive due to the c-section so I would have to wait until Greg came home to go see Brittany.  I would call several times a day to check up on her.  I remember crying on the way there one night and telling Greg to hurry because I felt as though my heart were breaking and I had to see Brittany NOW. 

Brittany had her first Christmas at NEMC.  She had a little tree that my mom got her and we brought her presents there and placed them under the tree.  Christmas Eve there were carolers singing it was so nice.  When we arrived Christmas day, Miss Brittany had a gingerbread house, a Beanie baby Minnie Mouse and lamb as well as a home made knitted hat.  It was so cute.  I never knew that Santa visited the NICU.  I’m glad that he did.

  During the next few days Brittany continued to tolerate her feeds well, and gain a bit of weight.  She was breathing well on her own with oxygen via a nasal canula and she was moved to a Special Care Nursery closer to home at the Good Samaritan Hospital.  Brittany’s big move was on 12-30-97.  She did very well.  We were so excited that she was doing so well that she could be moved closer to home.  The unit was a lot smaller than the one in Boston, it only had 12 beds instead of the 40 in Boston.  Everyone was really nice there.  They upped her oxygen due to the stress of the trip.  They also said that Brittany might lose a few ounces from the stress of the trip as well.  Brittany did quite well and continued to grow stronger and bigger everyday.  During her “visit” at Good Sam she gained weight, was weaned off of her oxygen, learned to eat on her own, bottle and nursing, and maintained her own body heat.  That’s quite an accomplishment for such a little peanut. 

12-31-97 was Brittany’s first new years eve, Greg and I went up to the special care nursery and brought in the new year with our beautiful daughter.  Miss Brittany slept right through the big event all snug in her isolette.

January 1998 – The majority of January was spent at the Good Samaritan Hospital in the Special care nursery.  Brittany Leigh did quite well there and was well known by the nurses.  Greg would go on his lunch break everyday and have “lunch” with Brittany.  He would feed her, change her and take her temperature.  He was so sweet with her, the nurses got a kick out of it.  I read to Brittany everyday, she had a lot of books and I would bring them and leave them under her isolette.  It seemed as though she was really listening at times.  She was such a good little girl.

1-27-98, Brittany had her pictures taken the day before she was to come home.  We had a “sleep over” that night so the nurses could make sure we could handle any situations that may arise when we are at home.  I was so excited that day.  I actually got to hold Brittany and walk around with her, because she was not hooked up to anything.  It was great.  Both Greg and I were so excited and at the same time so nervous to take her home.  We had strict instructions from the doctors not to have people over for a few weeks, let her get used to being home first and wash your hands every time before holding her, do not let anyone near her or in the house for that matter who may be or is sick, because she can get sick very easy being a preemie.  Yikes  !!

Brittany weighed in at 4 pounds 14 ounces when she came home.  I rode in the back seat of the car with her on the way home, she was so tiny in the car seat.  Wow, we are going home as a family today, all of us.  Yet another dream I was hoping no one would wake me up from.

Brittany was 6 weeks old and home for the first time.  Greg and I finished her room while she was in the hospital and had it all set up for her for when she came home.  Of course she did not sleep in there for a long time, she stayed in our room in her cradle.  She had the sweetest little face.  I still cannot believe how small she was.  January 29th, 1998 was the first full day that Miss Brittany was home.  We had a visiting nurse come out to weigh her and check her out.  She now weighed 5 lbs 1 ounce and was a bit over 17 inches long.  She was growing so fast, it was amazing.  Greg kept calling her his “big little girl”.  It brought tears to my eyes to see Greg with Brittany, the way he looked at her and handled her was priceless.

February - The next few weeks were busy ones, trying to get into a routine and such.  I called to set up an appointment for Brittany with Early Intervention to make sure she was where she should be for her age group. Sometimes preemies need a little help getting to where they should be developmentally wise.  Brittany also had a hearing test done this month and did very well, she will not have to return for a year.   Brittany was gaining weight very well and now had chipmunk cheeks and a chin.  On February 6th Brittany weighed in at 6 pounds. For Valentines Day I dressed Brittany up in different outfits, took pictures and made cards with them.  This would be the first in many dress up photo shoots I put this little sweetie through.  I got my first mommy card for Valentines Day and I cried.  I still cannot believe that she is here with us.  She was not even due until 2-15-98 and its Valentines Day and she’s here.  I love her SO MUCH , it hurts.  Brittany loved her baths and to have her hair washed.  Greg was always brushing her hair and she loved it,  it was almost as if she loved to be pampered as though she truly was a princess like her grampa called her.  We spend a lot of time in the “big bed” snuggling.

March was a busy as well as a hard month for us all.  Brittany was getting bigger and bigger she was up to 9 lbs. now.  I had to go back to work.  What a hard time that was for us all.  I went back part time for a few weeks to begin with.  Brittany would cry from the time that I left until I came home.  Greg would call me at work all upset.  He had done everything he could and she would still cry.  “She hates me” he would say.  I would tell him no she loves you very much, she is just so used to me being with her 24 hours a day 7 days a week.  We got a swing, a heartbeat teddy bear, toys, nothing worked.  A few times I came home from work early and as soon as she saw me she would stop crying.  I felt like I was the worst mother going to work.  But I knew all would be fine, it was another adjustment, one of many that we have and would have to make.   Brittany loved to fall asleep on her daddy’s chest and on a few occasions I would come home from work to find them sleeping on the couch.  They looked so sweet.  Brittany also like to sleep in her car seat and I came home a few times as well to her right next to the bed in it.   Brittany was still on a mixed up schedule as well. She would sleep during the day and be up at night ready to play.  None of us got much rest for a while.  It took us quite some time to get her on a normal sleeping schedule.  Brittany moved into her crib this month.  She loved her bed and she looked so tiny in it.  Brittany had her first visit out this month, we went o visit her great grandma “nana”.  We also went for a walk that day for the first time in her stroller.  She loved it.  She was hooked from the get go and loved to be outside in the fresh air.  Brittany had her first trip to the mall this month as well.  Easter was right around the corner and I dressed her up and placed her in a basket and took a bunch of pictures of her.  She wasn’t very pleased with me at first and then she actually fell asleep in the basket  !!!!  Laurie from Early Intervention is now coming every other week instead of once a month to work with Brit-Leigh to get to where she should be for her age.  Brit’s goals are to lift her head up when lying on her belly, kick her legs alternately, follow objects in a complete circle and grab and hold onto objects.  We had a lot of work to do, but I knew she would do fine and catch up with no problems.

April came so quickly, I can’t believe it.  Brittany is LOVING her tubs.  She loves for us to wash her little hands and feet.  It is so cute.  She is smiling and giggling up a storm.  She has such a personality.  At Brittany’s 4 month check up, I had mentioned to her doctor that I was concerned that she could not hold her head up on her own for long periods of time and that she cries when we place her on her belly to try and get her to pick her head up.  He stated that he was not concerned about it due to the fact that she was born 9 weeks early and in reality she is only 2 months old.  Lets give it some time he said and we will reevaluate her at her 6 month check up.  Brit-Leigh now weighs in at 11 pounds and 4 ounces and is 22 inches long.  We tried fruit for the first time and she loved it.  She eats it plain and with cereal.  It is so cute to watch her eating and tasting the different fruits.  It is Brittany’s first Easter and she has a very pretty pink ruffle dress to wear and her little itty bitty size zero shoes that are still too big for her.  She looked so sweet.  Brittany was still fussy a lot and I stopped giving her her vitamins which seemed to do the trick.  I thought they may be upsetting her belly and they were.  She started to eat a little bit better and be more comfortable without the vitamins.  My sister started to watch Britty for about 2 hours a day due to a work shift change that Greg had.  She loved to be there with my niece and nephew and they loved to have her there.  My nephew Wyatt, would hold her little hands and tell her how beautiful she was.  It was so sweet, it would melt your heart.

May, my time is flying by so fast, our baby girl is just about 5 months old.  Brittany is sleeping much better now and all night.  She has the cutest “duck fuzz” hair.  We are still working with Laurie at Early Intervention, doing our exercises to work on head control as well as strengthening her arms and legs.  I stopped nursing, trying to nurse, pump and work was a bit stressful and I was unable to keep my milk supply up.  I figured I did pretty well to be able to nurse her for the first 5 months, and she had gained well during that time.  Brittany loved to eat her fruits of course and this month we tried the vegetables.  Another big hit.  Although, she wasn’t a big fan of the green vegetables, she did like the orange ones.  “ I see somebody I love”, is a game that we would play.  It has the same idea of peek-a-boo except I would cover my eyes and then uncover them and say, I see somebody I love” and Brittany would giggle and smile.  The way her eyes would light up would melt your heart.  Brittany and her daddy got me a beautiful family ring for my first mothers day.  It was such a surprise, It wasn’t ready for mothers day, so in my card it said that Brittany picked out your gift, but its not ready yet.  Well for a little peanut, she did a nice job going to the mall and picking out that wonderful and precious gift  !!!!  Brittany loves to be outside.  She can’t get enough of it.  She goes out when her daddy is working in the yard.  We sit under the tree in the front yard, she loves that, she loved to watch the leaves in the breeze.  Another first, her first pair of sunglasses  !!  She looked so cute in these hot pink sun glasses.  We had a lot of fun with those.  We started going to breakfast on Sunday mornings with our friends and Brittany loved to be out and see new people.  She loved to watch people and see new things, however, she was still a mommy’s girl for sure :0)  We took Brit to the doctors again, due to the fact that she had been sleeping a lot,  and not eating well, or going to the bathroom well.  The doctor was not too concerned about it, he took some blood to check her thyroid and wanted to have the neurologist check her out to make sure that the bleeds that she had when she was born did not affect anything.    Brittany weighs in at 13 pounds and 2 ounces now.  I cannot believe how big my little girl is getting.  My brother, Brittany’s Uncle Dallas, tries to share with Britty, he tries to share gummy dinosaurs, gold fish crackers, (he is only 3 years old) I try and explain to him that she doesn’t have any teeth yet and can not eat the same things that he does.  It is cute tough how much he adores her.  If she starts to cry he gets all concerned, “Jenny, your baby is crying”, I know I would tell him, it’s ok.  He is so protective of her. 

June, my sister Tracey is 8 months pregnant as well as has Wyatt who is 2 and Kelsey who is 1.  It was getting to be a lot for her to watch Brittany also.  They were all sad that Brittany would not be there everyday.  My friend Jen started to watch Brittany.  She lived right down the street from me.  Brittany is getting bigger and bigger (to us anyway) She is now 13 pounds 5 ounces and 23 inches long.  A far cry from the 3 pounds 1 ounce and 14 inches long she was when she was born  !!!!  Brit-Leigh is “talking” a lot more now and still loves to be outside.  Miss Brittany is now 6 months old.  Her doctor is now very worried about her and wants us to see a neurologist in Boston.  Fathers Day is right around the corner and Brittany had yet another photo shoot.  My friend from work was going to take her pictures for a Fathers Day gift for Greg.  Wouldn’t you know it, it was pouring rain that day.  We ended up taking the pictures at our work, in a furniture store !!!!  It was so funny, we had her in a basket on a dining room table, on the beds in the children’s department.  Customers would walk by and ask what are of the store we got her in – and I would answer accessories.  It was a fun day.  Brittany smiled up a storm and we got some really sweet pictures of her.  We snuggle a lot and sing silly songs.  I would come home from work and peak in on Miss. Brittany, “she looked like a little angel snuggled on a cloud” in her crib.  I found these little fish that connect together like monkeys in a barrel.  Brittany LOVED them.  They were colorful, light and easy for her to hold onto.  We had them everywhere, on her crib, stroller, car seat, you name it, the fishies were there.  She would reach for them and bring them to her mouth.  It was so cute.  Greg loved his fathers day pictures.  We had a nice day.  Brittany and I got him a chop saw that he had been wanting and Shania Twain concert tickets.  Greg has started calling Brittany “hollywood”  when she wears her sunglasses.  I love the way he looks at her with such love.  I could not ask for a better father for my baby girl.

July – wow what a busy and nerve wracking month.  Brittany spent a lot of time with her daddy working in the yard.  Brittany’s grampa from Maine came down for a visit and this started a trend for them both.  When grampa came down to visit, he would come over and feed Princess Brittany her breakfast while I cooked him breakfast.  She loved it.  We had a doctors appointment on the 6th with the neurologist.  The doctor seemed very concerned.  He said that her brain is fine and that she was very social and alert, bright, however, she had very poor muscle tone and very weak muscles.  He ordered some blood work and scheduled an EMG.  He said that she may have a nerve disorder, but he will not know until the test results come back which will take about 3-4 weeks.  He recommended physical therapy to try and strengthen her muscles.  Now I was worried.  Greg said we wouldn’t know anything until the test results come back, so don’t get too upset.  I took Greg’s advice and tried not to worry about it.  Brittany. Liz and Glenn all went into Boston for the day to shop.  Taking Brittany to Boston for the day for pleasure with no doctors appointments was a treat in it self, it turned out to be a beautiful day to be walking around.  Brittany looked all around at all of the people and new sites.  She was SO good, and looked so cute in her little outfit she had on that day.  Brittany now weighs in at 13 pounds 11 ounces.  She had an eye doctor appointment, they like to check out the preemies eyes to make sure all is fine, and she passed with flying colors.  Brittany is trying to hold things with both of her hands now and gets so excited when she does it.  We went for the EMG, what a terrible time that was.  The doctor had only performed the test on 2 other children besides Brittany, and the equipment was geared towards adults.  Brittany was So good, I felt so bad having the doctor stick her with those needles.  Brit-Leigh actually fell asleep during the test.  I wanted to cry for her.  Greg was so upset that they made her go through that.  It seemed pretty senseless considering the doctors experience and the equipment.  He was none to happy.  We went to a craft fair with a friend of mine and Brittany loved it.  She really loved to be outside and to see new things and look at all the people walking around.  She studied everything and took it all in.  So many people stopped to comment on how sweet she was.  I thought I was going to burst with pride.  “I don’t think I could ever love you more than I do at a single moment and then you go and do something that just makes me melt and love you even more.”  “You have the most beautiful smile, your whole face lights up and your eyes sparkle, it still amazes me that you are here, you truly are a little piece of heaven.”  Brittany is now having early intervention once a week.  She puts her bink in and out of her mouth herself and she thinks it’s wonderful.

August – who would have thought the news we were about to receive, would be so devastating.  On August 3rd, 1998, our baby girl, our world was diagnosed with Spinal Muscular Atrophy.  Our lives fell apart in one brief moment.  We got to the hospital in Boston, our appointment was at 3:00 pm.  We waited and waited.  It was now 5:00 pm and everyone else had come and gone, we were the only ones left in the office besides those who worked there.  They finally called us in.  Brittany was such a good girl.  Greg was playing with her and she was smiling and laughing at her daddy.  She had dinner while we waited.  The doctor waited until we sat down and got situated.  Your daughter has Spinal Muscular Atrophy, it is a degenerative disease in which the nerves to her muscles are disintegrating, that is why she cannot do the things she should be doing.  “Ok” I said, “so she won’t be able to do things, she’ll be in a wheelchair.”  “No” the doctor answered, “she will have a hard time surviving the upcoming winter”.  WHAT, what do you mean.  Greg immediately said I want a second opinion.  The doctor answered, I can set that up for you if you like, but we have never had a false positive before.  I just stood there, “we waited so long for her” I said.  What so you mean she will have a hard time surviving the upcoming winter.  Basically, he said, the muscles are all getting weaker, it also affects the respiratory muscles and she will have a hard time fighting off colds.  Most babies do not live past the age of 2.  The doctor’s assistant left the room in tears.  Greg and I sat there stunned.  I held Brittany in my arms, I was not expecting this at all, I thought worst case scenario, she would be in a wheelchair.  That would not matter however due to the fact that she was smart and beautiful and we would help her be whatever it was she wanted to be in life, that would in no way shape or form hold her back.  The doctor said he was going to call her pediatrician and would be back in a moment.  I cant believe this, how can this be happening, it has to be a really bad dream, it just has to be.  The doctor came back and gave us a number to call for the MDA and someone’s name to ask for.  He said that they would be able to give us more information on SMA.  We left in silence.  We drove home in silence, Brittany was in her car seat smiling and being her sweet little self, I stared at her in disbelief.  It cannot be true, how can they tell me that my baby girl is going to die.  We got home, and Brittany was pretty much tuckered out from our appointment.  We hit rush hour on the way home, so it was very close to her bedtime anyway.  We got her ready for bed and tucked her in.  Our little angel, our baby girl.  How special she is to us both.  She is our world.  I lost it.  I cried and cried, I cried until I made myself sick.  I could not even stand up.  Greg was a mess as well.  What am I supposed to do , how can I live a single day without her ? 

The next few days were very hard, Greg couldn’t even look at Brittany without crying.  We had to tell the family.  We made a decision to let our parents and siblings know what was going on as well as our closest friends.  We explained the best we could to our families what we were told was our daughters fate and told them it was life as usual.  We would both go back to work and keep things as routine and normal for Brittany as possible.  Brittany knew something was going on , she would only stay with me.  Everyone was so sad, I told them that they cannot act sad in front of her, because she is smarter than you think and is picking up on it. 

The next weekend we went to the EBCC chicken bar-b-q.  It was a day that was bittersweet.  There were families and kids everywhere, and everyone was having a great time.  It was a bit warm that day and I took Miss Brit under the sprinkler for the first time.  She did not like it at first , but the second pass she did not mind it at all.  We danced to the music and laughed and played.  Brittany loved to “dance” with her mommy. 

8-15-98 “Daddy got up with you this morning and mommy slept in.  I got up and daddy had finished feeding you and was playing with you on the couch.  He adores you.  His eyes light up when he sees you and plays with you.  You are his everything.  I love the way you two play together.  You smile at him and giggle, you look so surprised when he goes boo and I love the way your face squishes up when he kisses you because his whiskers probably tickle and scratch your face.  I wish that we had forever with you.  We love you with all of our being.”

8/19/00 Brittany Leigh Griffin was baptized today at the Congregational Church that Greg and I were married in.  She looked adorable.  We got her a sweet little white cotton dress that had a little bird and flowers across the bib of it.  It really was sweet.  Brittany was a good girl in Church, when we handed her to the Reverend for her to be baptized, she started to cry, it was so funny because as the Reverend handed her back to me, she wasn’t even entirely in my arms yet and she instantly stopped crying.  What an actress  !!!!

Brittany and I were sitting on the couch together and I stuck my tongue out at her, she stuck hers out right back at me.  I thought it was so funny.  So I would do it again, and so would she.  I think I am the only mother who actually encouraged her child to stick their tongue out.  She looked so cute  !!!!

Brittany now weighs 13 pounds and 8 ounces and is 24 inches long.  She has lost a few ounces since last month.  We also found out that Brittany has type 1 SMA.

September – On the second of September, I took my sweet little punkin to get her pictures taken.  We went to the mall to a 1 hour place (I have no patience).  I explained that Brittany could not sit up by herself with out support and the person who took her pictures was great.  He had a bean bag chair to prop her in and the pictures came out terrific.  She looked so sweet.  We shopped for a while and came back to pick up the pictures.  The person who took the pictures was very surprised to hear me say, “I’ll take all 4 of the packages”.  I couldn’t resist, I had to have them all. 

Miss Brittany Leigh was no stranger to having her picture taken, I am guilty of dropping off film to be developed at least once a week.  The photo lab personnel knew me by name.  It was really quite pathetic  J  This week was no different, than any other week that had passed us by.  It was a beautiful day, sunny and warm and I dressed Brit-Leigh in a sweet little dress and took pictures of her outside in the yard in a little white wicker chair.  I had her in two different outfits.  She looked so sweet, a light breeze would come by and blow her wispy hair around.  She definitely was mommy’s “cutie pie punkin face”.

This week Brit was not really feeling well at all.  She was running fevers throughout the week, at one point it was 105  !!!!  We called the doctors, they said to alternate children’s Motrin and Tylenol.  Brittany really was not eating well and had a small little cough.  Finally on 9/19/98  I called the doctors again, and they said to bring her in, she wasn’t her happy self, was still not eating well and had a little cough.  Greg was not home he went to pick something up at the store.  I packed a bag and we left when he got home.  We went to the emergency room at the hospital.  They gave her an IV and x-rays.  They checked her into the hospital for the night.  They said she has pneumonia and she slept in an oxygen tent.  I slept next to her all night long.  The next morning was one of the scariest moments of my life.  The nurse had paged the Dr. that was on call.  The nurses are suctioning Brittany trying to get her SAT’s up, but it is not working, they took a blood gas and that did not look good either, Brittany was not getting enough oxygen in her system to flush out the CO2.  They took another x-ray and discovered that her right lung had collapsed.  They want to send her into Boston to Children’s Hospital, Greg was at home and on his way in, they are talking of intubating her, it doesn’t look good.  Greg still had not made it to the hospital yet, they want to take her NOW, but they won’t let me ride with her in the ambulance, and they won’t let us follow either.  Greg finally arrived, we all left, Greg and I had gotten lost on the way to the hospital, we had never been there before, and arrived just in time, they were about to intubate her, there were people everywhere, they had said that they had almost lost you, and they took us down the hall to “talk”.  They told us that things that not look good and that they did not expect Brittany to survive the night.  What, how dare they tell us that our sweet little baby girl isn’t going to make it, we just found out 6 short weeks ago that the had SMA, they told us she would have a hard time making through the winter, Its not even technically autumn yet.  Someone must have the wrong information somewhere.  We went back and sat by our angel as she lay there and hoped and prayed that she would be okay.  Hours went by and thankfully, Brit-Leigh’s condition improved somewhat.   By the next morning, Brit’s lung was not collapsed and they came down on her oxygen as well as the pressure. They placed a feeding tube in her nose so that she could have some nourishment. Greg went home to get some things for all of us, we planned on being here for at least a few days. A few days later, Brittany had yet another really bad “spell”, her heart rate dropped and they once again took us down the hall and told us that things do not look good, they are going to start to give you morphine to make you more comfortable.  We got back to your bed, We were both crying, I started to stroke Brittany’s hand and sing her a silly song that I made up for her to the tune of “Winnie-the-pooh”,  “Brittany Leigh, Brittany Leigh, cutest little baby in history she’s Brittany Leigh, Brittany Leigh, cutie little sweetie lovely pie, I love you, yes I do, you’re my little honey all snuggly, I love you, yes I do, you’re my little cutie sweetie pie”.   We were both So scared.  Brittany slept most of the time, but when she was awake , she looked so sad and scared.  It broke our hearts.  Brit-Leigh pulled through again though, she definitely was a little fighter.  The next few weeks were hard ones.  Brittany was doing better.  She had her first pumpkin sent to the hospital from my sister and Brittany was amazed by it.  She would look at it and touch it, it was so cute.  One of Brittany’s respiratory therapists made arrangements for Miss Brittany to have a twin size bed instead of the crib, it was so nice, because now I could climb in bed with her and snuggle her like we do at home. 

October, whew, another busy and challenging month.  Brittany continued to do well.  She had her “spells” every now and then, but they were getting further apart and not as intense.  Brittany was smiling and laughing and winning over the hearts of the nurses in the MICU at Children’s Hospital.  I stayed at the hospital with Brittany, Greg had returned to work, but came to visit everyday when he got out, and would stay over on the weekends.  Brittany was getting to be such a big girl.  She was “talking” a lot more and mouthing a lot of things, she was doing really good bringing things to her mouth herself.  Brittany gained most of the weight back that she lost.  We made sure she had lots of toys and books for us to read and she was so good.  The doctors decided they wanted to do a swallow test, unfortunately, it was terrible, they had to stop it immediately so she wouldn’t aspirate.  She would never be able to eat by mouth again.  I was so upset, I wanted her to come home doing everything she was doing before she went into the hospital.  We had so much to learn.  We had to learn how to do chest p/t and deep suctioning, we also had to learn CPR and how to give oxygen, how to unclog her feeding tube and how to check to make sure she was digesting all the formula she was getting incase she had reflux so she would not aspirate, how to use the feeding pump, oxygen machine, sat monitor etc.  How overwhelming is that ?  We were nervous, but jumped into it, for we wanted our little sweetie home with us.  A few days before Brittany came home, we packed her up in a wagon with all of her new equipment and took her for a walk around the hospital, she loved it.  She has the most expressive eyes.  We even went out side for a few minutes in the garden.  She was SO excited.  The big day was coming very fast and I had to get so much ready at home, I went home overnight and cleaned, dusted, vacuumed and organized to get things ready for Miss Brit-Leigh to come home. 

10-22-98  the big day is here  !!!!  Brittany got to come home today.  She “visited” the Children’s hospital for five weeks.  There were many people who were sad to see her go, but happy at the same time.  We had an uneventful ride home in the ambulance.  One of Brittany’s regular nurses, came for the ride home with us to make sure all went well.  Everyone was so very sweet to her there.  We got home and got Brittany settled, there were many deliveries throughout the day bringing equipment, formula and supplies.  We did not have a nurse scheduled for when we got home until 7pm that evening.  Wow – so much to get used to, we are SO happy to have our little angel home with us again.  “Daddy is so happy to have you home.  His face lights up and you always give him the biggest smile you have from the bottom of your toes.  Sleep well my little angel and I hope that you know how very much we love you.”

Over the next few days, there was some adjusting to be had.  We had an awful time getting nursing coverage, and what coverage we did end up getting was terrible.  Out of 8 nurses, I had fired 6 of them.  I filled out the progress reports on a daily basis and oriented the new nurses when they arrived.  It was not a very pleasant experience that is for sure.  We rarely had overnight coverage and would have days where we had no one.  I felt so badly because I did not get to spend the “quality” time I had wanted to with Brittany, because I was to busy taking care of her, keeping charts and living on minimal sleep.  When we did have coverage, I slept because I would be up for 36-48 hours at a time.  I loved having her home though, and she loved it as well.  She loved watching her “Winnie the Pooh” video, being read to and snuggling.  Brittany loved to see all of her things and be in her own room in her own bed.  She could not talk , but you could here what she was saying through her eyes and facial expressions.  Brittany LOVED to “talk” on the telephone.  She would listen SO intently.  It was really cute.  Halloween was fun.  I made Brittany a little angel costume.  We brought her downstairs into the living room, propped her on the sofa (which was blue) and placed white sewing filling around her to look like clouds.  We took quite a few pictures of her with her little pumpkin and other little things.  She was so good.  She looked so incredibly sweet in her little white dress with angels wings, a sparkly halo and her little cute bare piggy toes.  She had to be the sweetest little thing I had ever seen.

November – what a precious month this is.  Brittany was really getting to be such a big girl, she was so curious and bright eyed.  It was hard to believe she was going to die, she was so full of life.  Brittany had her first lollipop this month.  She was so excited and so proud of herself.  She held onto that tiny little stick and stuck that pop in her mouth, such a sweet little girl.  Brittany was mouthing as much as she could.  She loved her toothbrush.  It was small and light enough for her to lift and maneuver into her mouth.  One of her “new” things to do was to click her tongue and blow lots of spit bubbles.  She really thought she was funny when she did these “big girl” things.  Brit-Leigh loved to touch things, she would fall asleep rubbing the ribbon on her lamb in her bed.  She would pat “Blue’s” ears and she loved to rub my face or to touch my hair.  Brittany was “talking” so much more now, and I never wanted to forget what her sweet little voice sounded like, so I tape recorded her “talking”.

Well Brittany had been home for just about a month now and we had an appointment to take her into Children’s Hospital to see how she was doing.  What an all day event that was – whoa.  We had not taken her out anywhere before with all of her equipment and it was very awkward and nerve-wracking to say the least.  We finally made it to the Hospital and the doctors were very please to see her.  Brittany had gained just about all of her weight back that she lost and was at a whopping 13 ½ pounds  !!!!  Brittany had an RSV shot today also, I felt so bad, but she was such a big girl.  I am so proud of her.  Once the appointments were done, we went to visit to visit Brittany’s friends in the MICU.  Everyone was so very happy to see her again.  We brought them some pictures of her dressed up in her Halloween costume.  By the time we got home it was after 5 pm and Brittany was exhausted as well as Greg and myself and we all went to bed.

Thanksgiving 1998 – Greg, Brittany and I stayed home for Thanksgiving.  I sewed all day and made this little dress for Brittany to wear, I also made a pilgrim hat and an Indian headband out of construction paper too.  The things I made this poor little sweetie dress up in, I tried my best, it was a sad little dress, but she looked sweet in it anyway.  We had a very quiet day together.  Brittany has now had all of her holidays.  She had her first Christmas right after she was born  J 

November 30th, 1998 , 2 weeks before Brit-Leigh’s 1st birthday – This was one of the hardest days of our lives, our sweet little baby girl became an angel.  We had called the ambulance the night before and she was once again at Children’s Hospital.  Brittany was not doing well at all.  It was time, we had to make the decision.  It was the hardest choice we ever had to make.  I leaned over to my baby girl and told her that “mommy and daddy love you very much and that it is ok to go”  they removed the mask from her face, and her feeding tube from her little nose, they placed Brittany in her daddy’s arms and took off the nasal canula, and she left us instantly.   It was as if she was holding on, waiting for us to let her go.   Our world was gone, just like that.  We held her for a few more moments, hugged her and kissed her and tucked her into her hospital bed.  It was the most terrible feeling to leave our baby girl there. 

  I firmly believe that everything happens for a reason.  I believe that Brittany Leigh arrived here 9 weeks early so that we may have that extra time with her.  Her first six weeks of life, very scary as they may have been, was to prepare us for her last 10 weeks of life so that we were familiar with the equipment and procedures of taking care of a fragile little life.  Brittany was here for a short time, but made an enormous impact on so many peoples lives.  She taught us many things in her short time on earth.  Brittany was tolerant of so many different situations, she was so sweet and always had a smile, (especially if you were a male – she was a total flirt J)  Brittany loved to snuggle especially with her daddy, she was the famous and true “daddy’s little girl”.  I have never in my life loved someone so much, so completely, if I could have taken her place, I would have in half a moment.  But I could not, and the best thing that myself and Greg could do, was to let her go.  It was the hardest thing we ever had to do , but we could not be selfish and keep her here if she was ready to meet our LORD, and she was. 

I know deep in my heart that Brittany Leigh is in Heaven with Jesus our Lord and is doing all of the things her earthly body would and could not allow.  I like to think that she is running barefoot in the fields of Heaven with little flowers in her hair, laughing and smiling with all of the other little angels.  This eases the pain and the emptiness within me, because I know that there is no way she would or could be able to experience such wonderful things on earth that she is in Heaven.


Thank you for taking the time to read our daughter, our angel’s story.  I know that it is very long, but I could have written hundreds of more pages about the love of my life, my world, my baby girl  -                    

Brittany Leigh Griffin        12/15/97 – 11/30/98