Sunday, October 30, 2011

Things that make you go...hmmmmm

I was taking another picture of Cora yesterday.  One that shows how she is able to sit in her activity seat and how much she loves it.  We have to place blankets around her to keep her stable, but the smile on her face makes it all worthwhile.  I was in the process of taking her picture when Kelsey (my 21 yr. old) asked me if I would take a picture of her and Cora Jean.

Normally, this would not have been a surprise request from one of the other children, but the request coming from Kelsey did indeed surprise.  You see, when I was pregnant with Cora, Kelsey would constantly remind me that she was not going to do anything with the new baby.  That she didn't like babies and didn't like all the crying.  So in short....please don't ask me to do anything with Cora Jean when she gets here. (Kelsey's words)

Some of you might be thinking "how incredibly rude" about Kelsey.  Let me remind you that she has been through three other siblings (babies) before Cora Jean and she has definitely had her share of whining, crying, snotty noses and dirty diapers.  I did not in least become offended by Kelsey's statement of Independence and just would smile and hug her and tell her, "Ok Kels." I understood it from Kelsey's perspective.

But this statement to have her picture taken with Cora Jean really took me back and gave me an "ah ha" moment.

Kelsey does indeed do a great amount with Cora Jean and is very protective of our little Cora Jean. Kelsey will change diapers (yep even poopy ones), feed her, hold her and rock her, play with her, etc.  I find that Cora Jean is already teaching everyone in this little family a great deal about life and life lessons.  She has just accomplished in teaching Kelsey, without any spoken words, that sometimes our biggest "WONT DO'S" will turn into our greatest  and most wonderful "WILL DO's".

Thursday, October 27, 2011

Seven months and counting....

Cora has made it to the seven month mark and she made it with will and determination.  How lovely to be able to spend this time with her.  Despite the fact that she goes back for another open heart surgery, and the set back from limited activity before the first surgery, she is learning more as each day passes.  One of the questions I often get asked when someone realizes that Cora has Down syndrome is, "How bad does she have it".  I tell the person with honesty, "I dont know.  She is Cora and that's good enough for me."

With that,  I will list milestones Cora has accomplished and not the ones she has not.

Some of the milestones Cora has reached:

She can sit stable with assistance under her arms.
She has control of her head and neck.
She can roll from front to back
She can roll from back to front
She can manage tummy time for 5 minutes before cyanosis sets in (that's the turning blue of lips, face, hands and feet from her heart problem)
She can reach for a toy while on her tummy
She recognizes her name and will turn to find you
She recognises the request to "come here" with arching of her back to be picked up
She is making the baby sign for "milk" when asked if she is hungry
She is saying "omma" for mama
She can clasp her hands at midline, suck her thumb, grab toys from beside herself and bring them to midline to play
She verbalizes a variation of sounds when playing or being talked too
She says "hi" very loudly when she wants attention (at least we think that is her word because she only uses it when she wants out of the crib or wants attention when having playtime)
She displays "stranger awareness" and separation anxiety.  (she will look for me or her siblings when a stranger is holding her, if we can not be seen she will start to fuss loudly and arch her back to get away from the stranger.  This is one of the few times she will actually cry with distress.)
She recognizes her siblings or myself in a crowd of people.


Like I said earlier, she is Cora.  Beautiful in her development and personality, just the way she is.  As God made her and intended her take this journey....

Tuesday, October 25, 2011

A wonderful moment

Cora is mostly full of energy right after a nap in the afternoon.  This seems to be her special time, a point when there is enough medicine in her system that she doesn't struggle to much for energy or reserves.   Doctor Statler (her pediatircian) and I have decided that we gauge Cora's awareness and energy level by the amount of raspberries Cora is doing while she is awake. ( If the raspberries are few then Cora isn't feeling well.)   This is a new trick Cora discovered and is a great way to tell how much energy she has.

Cora hopes you enjoy the raspberry kodak moment:


Monday, October 24, 2011

A set-back


Cora had been home for almost a week when we had to travel to Marquette to her pediatric cardiologist for a follow up echo cardiogram.  He noticed a little regurge of flow in her heart although he thought she looked great.  I totally agreed with him.  Cora was a pink color, had real awareness in her gaze, had more energy and for the first time since her birth, she was awake and playing more than she was sleeping.

By the time we got home on Thursday night Cora was tired from the long day and so was I.  During the night she was more restless than usual and I just figured it was because of the six hour drive and the doctors visit.

Friday morning she was awake at her usual time but really had no interest in eating.  Odd, I thought.  An hour later I tried again to feed her and she drank her full serving of formula and then within five minutes vomited it all back up.  I started to get worried but she didn't have a fever so I just assumed that her increasingly fussy mood was because of teething. 

Unfortunately as the day wore on she became worse.  Cora was crying most of the time and twisting from one side to the other if you laid her down.  Her most comfortable and least fussy position was being held upright against my shoulder with me patting her back.  By 4pm I was very worried and called her pediatrician.  The doctor said that it was probably just a "bug" but if she got worse to call her.

Saturday morning had me on the phone with the Doctor again.  Cora hadn't slept much, was very fussy, still had no fever but was breathing with retractions.  A retraction in breathing is seen when Cora's chest works really hard at breathing and her tummy is used to pull air into her lungs.  For Cora to be fussy was highly unusual.  She is a happy, contented baby and seldom cries.  By Saturday afternoon I had Cora in the emergency room in St. Ignace.  The ER team evaluated her and called the children's hospital in Ann Arbor and they were instructed to give her an additional dose of lasix.  Because Cora would still smile at people randomly, and stop crying when in my arms, and had normal blood work, it was felt that there was no immediate danger for her.  Simply said, they didn't know what was wrong but she was stable.

Sunday had the doctor and I making phone calls back and forth to each other to keep track of Cora's condition.  Her breathing at this point was at 80 - 90 breathes a minute but she was tolerating food when I could get her to eat.   We were seen by the doctor first thing on Monday morning and with another call to Ann Arbor Cora was sent to Petoskey for another echo cardiogram.  Once the result were in I was back home in Pickford with Cora.  It was then that I was told I needed to take Cora to Ann Arbor and that the pediatric cardiology fellow was waiting for her.

I loaded her up and away we went.  I drove with my flashers on and drove fast (not telling my speed) the whole way. We past several cop cars on the way and no one seemed to see us or give any intention of stopping us. This was one time I would not have minded being assisted by a fellow police officer, maybe even having a police escort?! I prayed the whole way and tried to not think of anything terrible happening to Cora. 

Once in Ann Arbor Cora was evaluated and made stable with medicines.  It was determined that her heart repair had a "partial dihist" and the regurge from her tri-cuspid valve was actually worse than before the operation.  This happens sometimes, and yes, I knew it was a chance with this kind of open heart surgery.  You are given a choice before the surgery, you are told the percentage of success and what can go wrong.  I remember Dr. Bove asking me if I still wanted Cora to have the surgery.  I remember telling him, "If she doesn't have the surgery, she will continue to get sicker and die.  So there really isn't a choice is there?"  and he replied, "I guess not when you look at it like that."  This was no one's fault.  It just happened.  Unfortunately Cora was suffering because of it.

Cora was admitted for a week and stabilized on more medicine.  It was decided that she would take the medicine as long as possible to get her bigger and stronger before another operation was done.  The hope was that she could get another year under her before she needed the next operation.  I went home with 4 different medicines.  She takes four in the morning, one in the afternoon, and four at bedtime.  She is also feeding through a NG Tube due to not having enough strength to bottle feed for the whole four ounces.

She is a trooper, this little girl can fight with the best of them. 

After being home for two weeks she was again seen by her doctors and they all agreed that her operation cannot wait any longer.  Cora struggles to keep on her weight, she struggles to finish even an ounce of formula now and the rest is fed through the NG Tube.  She is again sleeping more than awake.  Her hand and feet are starting to swell from water retention (despite being on two diuretics) and she doesn't have much playing energy.  Although she can still do raspberries!

Don't let her fool you!  Look away and she is strong enough to pull that whole NG Tube out of her nose and play with it in her hands.  And she looks very pleased when you discover that she has again succeeded in pulling it out.  She does not, however, like my putting the tube back in!


At this point her next surgery date has been set and is quickly approaching.  I am scared, relieved, terrified and joyful.  Scared because I know what all will happen to Cora and relieved to see the end result that we had before the "dihist of wound" found her. I long to see that energized Cora Jean again.

Just another step on this journey Cora has decided she and I must travel together....


Sunday, October 23, 2011


August 29th had us in Ann Arbor at the children hospital by three in the afternoon. That place is enormous and is literally a city with the city. The hospital is all encompassing for all the comforts of both family and patients. I was shocked and enlightened by the friendliness of all the staff and their willingness to help us find our way, some even leading us to our destination point if needed.

 

Cora, like always, just took it all in as I pushed the stroller around the hospital and to our hotel room. We stayed at the Med Inn, which is located within the facility and this definitely helped ease the tension some. I was in the same building as Cora and this helped alleviate my stress level a great deal.

Got to the room and unpacked for the two week stay. Pediatric Cardiology family services had told me to prepare for a two week stay because children who have Down syndrome take longer to get off the ventilator, due to their lack of muscle tone, and it sometimes takes a longer healing process. Cora didn't know what was coming but I sure did. I was dreading it and knowing it had to be done all at the same time. Not an emotion I would wish on any parent.
 

The next day had us up at 6pm and Cora had been fasting from the midnight hour for the testing they would do on her. During the next eight hours Cora would be evaluated by the surgical team, have an echo-cardiogram, have x rays and blood-work. She was being sedated for the echo-cardiogram which was the reason for the fasting. After she had the echo she was able to feed and carry on throughout the day. After all the testing was done, Cora and I got to meet Dr. Bove and he went over every detail of the surgery with me and was very open to questions.

SIDENOTE: for those of you who are unfamiliar with how they x ray an infant – google “pig-o-stat” infant x ray. It is a horrible experience but I was constantly reassured it was painless and comfortable for Cora. I asked if they had sat in the equipment the same way as Cora was strapped in and I got a surprised look. Exactly! Until you can tell me that you have tested the machine you cannot tell me what it feels like for a child that cant speak up for herself. So if I am going to stand here and cry while my daughter cries deal with it, because I am not interfering with your testing at all. Thank you very much...... I think that was the only time I got a little snotty with folks. Sorry, just human, not superwoman.

During this whole experience I was never made to feel left out of the process or made to feel silly for any question that I asked. I even found myself repeating questions and then apologizing when I realized I had just asked that question a few minutes ago. The staff would politely laugh and tell me it happens to all the parents and that it is the stress of the situation. This somehow made me feel better.

 

August 31 came around and Cora was ready for her surgery. Problem was there was no bed in the PICU for Cora after her surgery. After three hours of waiting it was finally decided that Cora would be postponed for two more days until surgery took place. I was delighted that I got to have two more days with my daughter and disappointed all in the same breathe. I understood though and didn't want to put another child at risk by they being rushed out of the PICU before they were ready just to make room for Cora.

September 2 and this time there was no delay. Cora was evaluated and dressed for surgery. At 7:30am they took her from my arms and sent me to the waiting room. I felt like my breathe would never return. I felt like I had just handed my child over to never see her again. I didn't want this to happen! Bring her back! I didn't ask for this and neither did Cora! This is so unfair! All these thoughts were shooting through my mind and still I felt like there was no air in the room. Tears were freely flowing as I wondered if that would be the last time I held a smiling Cora in my arms. I went to the waiting room.

By 1p Doctor Bove, the surgeon, came to find me and tell me that the surgery was a success and that Cora was doing beautifully. I hugged the poor man and thanked him for helping Cora. I don't know if he gets many hugs because he seemed kind of surprised. But what do expect from a scared mother who just got great news?

I finally got to see Cora and was shocked, dismayed, lambasted, sideswiped, run-over by a truck, and any other phrases that might described that feeling at first seeing you child on a gurney with tubes coming out of every open space of her body. My eyes found the monitors and I read all her levels and stats and pressures and I was relieved. You learn a lot of things about those monitors and what they do and why they do it and you learn to understand why its important for you ton know these things. I remember the nurse gently teasing me about t knowing the monitors when I told her Cora's oxygen saturation had never been 100%. I think that was the first time I smiled that whole day.

 the nurses put a pink headband on Cora because it bothered me that everyone kept calling Cora a boy.
 

The next four days were spent in intensive care and just holding Cora's hand or reading my book while sitting next to her. She didn't have much awareness, and I understood that, but it made me feel better to be near her and to see her thriving more and more a each minute passed.

  
That first time I got to hold her after her surgery was amazing. Like giving birth and holding her again. I was so filled with joy and thankfulness at this little blessing and this little redheaded fighter that I grew teary eyed and couldn't stop smiling. I sat with her in a rocking chair and didn't move for fear of hurting her. Sat there for two hours just holding her and looking at her. Just enjoying the knowing of who this child was and how much she had already endured. Just looking.

 

I learned during her stay what :

  • breathing sprints are
  • steri-strips fall off in their own time
  • wounds heal and become scars that need to stay out of sunlight for a year
  • vibrators are used under the blanket to help the fluid move out of the infants lngs
  • a small mallet with a cup on the end is used to move mucus out of the lungs by hitting the child on the back with it
  • restraints are commonly used to keep an infant from pulling out the ventilator tube
  • how to change a baby while on the ventilator
  • how to bathe a baby with a serious chest wound
  • love for  my child grows no matter how emotional I am feeling 
 On September 9, 2011 Cora was doing wonderful. She was able to nurse a whole 4 ounces from a bottle without stopping for a nap or sweating. She was full of energy and awake more than sleeping. She was a little spitfire and I was thankful she was coming home. There had been a little fear in my mind that I would not return with her if the surgery went bad, so this was a tremendous relief for me.

 

Cora did amazing and was recuperating well for the first week after her surgery and then things turned for the worse.

She starting to again have serious signs of heart failure.

Saturday, October 22, 2011

Faith becomes a part of the Journey


Cora stayed in hospital for four days before we were released to come home. During that time she was put on oxygen twice because her oxygen saturation level was lower than 85%. She was nursing well though. I was so happy for this accomplishment because the lactation specialist had already visited the house and talked with me about the struggles Down syndrome infants can have with latching on and the “suck / swallow” instinct.



We were both exhausted by the time we got home. I was relieved to be away from the hospital and the nurses. Everyone was a great help, almost to helpful. It seemed like we were the revolving door for those interested in seeing a Down syndrome infant, or for well wishers that felt it necessary to tell me about their family or friend that has a child with Down syndrome. Did they all think I needed a pep talk? I had just pushed a baseball through a keyhole, I just wanted peace and quiet with this beautiful little girl.



Once home the real travels began. We spent the night at home and the next day were going to Marquette to see the pediatric cardiologist. The six hour ride did not do well for Cora and her learning to nurse. It put us back severely. I couldn't get Cora to latch and stay on the breast. By the time I had finally succeeded in getting her to nurse she had gone a full 10 hours without nursing. Once she remembered what it was all about I spent the next few days nursing her every hour.

The average time it would take for Cora to latch on and suckle would be 40 minutes. Her suckle time would be a good fifteen minutes on each breast. It was only when she suddenly lost interest in the breast feeding and had no energy or appetite that the whole heart issue really scared me. At 5 weeks Cora's heart started to fail and I rushed her to Petoskey hospital. They were able to stabilize her with IV Lasix (a diuretic) and she did well on that dose for about a week. She again lost interest in feeding and this time her breathing was labored as well. I rushed her to Marquette Emergency room where her cardiologist was and he took an Echocardiogram and again stabilized her on a higher dose of Lasix and added Digoxin.



During the first five months of Cora's life we traveled over 8,000 miles together for doctors appointments. We were averaging one to two doctor visit every week to either Marquette, Petoskey, St Ignace, Pickford Clinic and to another specialists because it was originally thought that Cora was deaf. . To say the least, Cora is a great traveler and when she becomes upset if I sit her in the infant car-seat she goes to sleep because she assumes we are going for a long ride.



Cora's deafness seemed to affect myself and the kids less than the news of her having Down syndrome. (She hadn't passed numerous hearing screens until in her fourth month. At that time it was figured the hearing development delay was from being born early.) When I thought Cora was deaf I did some research on sign language for babies. I found a great program and it fulfilled my thirst for learning as well. I studied with the company and became a Certified Independent Instructor for the Baby Signs Program®. Cora has been learning sign language from the time she was two months old. She could recognize the sign for milk when she was three months old and would get excited and kick her legs to show she was hungry if you did the sign. Cora is just now starting to wiggle fingers when we do the milk sign for her and waves her arms. It is amazing at how well the other children have taken to the needs of Cora and it all blends in beautifully with everyone. Cora was quickly becoming the little star of the family. The older children love her tremendously and sometimes everyone rushes forward when I ask for a volunteer holder so I can get a household chore done



But I digress....sorry. The doctor's had her stabilized on the Lasix two times a day and Digoxin had been added to help her heart pump more efficiently. I had almost forgotten about the heart problem until she really started to show signs of failure.


On a routine visit to her cardiologist in Marquette he told me it was time to schedule the surgery because blood-work was showing increased sign of heart failure and Cora was starting to loose to much weight despite the fact that I was feeding her breast milk with formula made to give her 26 calories per ounce. (normal formula feeding contains 20 calories per ounce.) We, the doctor's and I, were doing everything we could to give Cora a fighting chance, her heart was just saying that her little body couldn't do it anymore without some medical intervention.

This is when the real journey in faith began....

Tuesday, October 18, 2011

Welcome my little button

Walked into the Docs room on Friday at 36 weeks pregnant.  The ultrasound looked great and Cora was weighing in at 6lbs.  "Are you ready for this baby?"  he asked me.  "You bet.  I am ready to not be pregnant and to hold my baby girl.  The next couple of weeks are going to be the longest."  "No," he said "Are you up for being induced next week, at 37 weeks?  "Okay, great.  Wait, why?" 

Are you ready for it, my fellow reader?  He wanted to induce my labor because he had found that babies with Down syndrome have a higher risk of stillbirth.  His theory was if we could induce labor we could fool mother nature and increase Cora's chances of survival.  Not the reason I wanted to hear for inducing labor.  Nope, not at all.  But I agreed and we made the plans for me to be in the hospital the following Friday and he would induce labor.

March 25, 2011 - Labor was induced and pitocin started at 1pm.  Let me tell you ladies who have not had the pleasure of birthing a baby.  Its not what its cracked up to be.  There is no pretty music playing once you hit 5 centimeters, all you hear is annoying noise.  And by the time your at 8 centimeters every bodies breath stinks and you really rethink your coaching choices.  If you have the pleasure of getting all this with the added bonus of pitocin your are in no way agreeable to anything....unless of course they would like to remove the baby from within you and give you immediate comfort.  They you are really nice to that person. 

There was a pediatrician on staff for this birth, and unfortunately he had a family tragedy and had to leave.  They stopped the pitocin drip at 5 centimeters and were going to transfer me to Traverse City where there was a NICU for Cora.  Traverse city said no way and keep her there because she could deliver in the ambulance.  Doc started the pitocin again and they found another pediatrician who was out to dinner and had to be physically tracked down for Cora's delivery.  See, everyone was concerned about the heart condition and that Cora would crash after delivery.

 I kept telling them to give Cora  a chance.  That Cora would decide what was needed after her birth.  That we couldn't predict the future.
Yes, that was during my sane, less painful, less dilation moment of labor.

At sometime around 1am on March 26, 2011, Cora Jean Head made her presence on the bed.  I grabbed Doc. Wilder's arm in fear and kept asking him if she was alive.  She wasn't crying and all my other babies had cried. 

WHY WASN'T SHE CRYING?  Someone do something.

 The pediatrician grabbed Cora and started working on her.  When I saw Cora as they lifted her from my legs, she was absolutely blue.  Not a pink speckle on her anywhere.  Totally blue.  My heart shattered.  I started to cry as I stared at the bassinet where they were working on Cora.  Then I heard the tiniest little squeak.  Like a you hear from a baby kitten when they are first born.  Then one gutsy little cry.  Everyone looked at me then, the room full of doctors and nurses and they all smiled.  I knew then that Cora was a fighter. It was then I realized that everyone in the room had been holding their breath, waiting for that beutiful sound of Cora deciding this was a journey she was going to take.

By the time she was stable and they handed her to me her outer limbs were turning pink and she was wide awake.  I saw this baby for the first time.  I searched her face, her toes, her fingers, her legs, her body.  I touched her all over.  I kept kissing her and looking at those beautiful blue eyes.

 I was searching for this thing called Down syndrome.  I was searching for the abnormal, not Gerber looking baby.  I was searching and all I found was this absolutely beautiful baby girl with blue eyes and red hair.  I found my Cora Jean.  Cute as a button, this little 6lb. 9oz, 19 inch long perfect and unique, baby girl.  (to this day when i look at Cora I still don't see the Down syndrome).

newborn


newborn (losing the blue tinge)

newborn (all pink)

Welcome home.  That's all I could think to say to her.  Welcome home Button.

Saturday, October 15, 2011

Waiting for Cora

The next three months were a whirlwind of activity and appointments.  I was sent to specialists and was seeing my regular OB doctor.  I was traveling from Marquette, to Petoskey and back to home to Pickford on a regular basis.  I even went to Traverse City at one point to meet up with another specialist.  All these doctors kept telling me the same thing,  "Yep, Cora was definitely going to be born with Down Syndrome." 

At least they were calling her by name and not "the fetus" anymore.

The highlight of these visits were the ultrasounds.  During the time that it took for the doctors to evaluate Cora's in-utero growth and weight gain, I was able to see my child thriving in her safe water filled nest.  I could see her hair floating and marveled at how fantastic it looked.  (I was hoping that hair was going to be red because my other children didn't have red hair.)  It was during the ultrasounds that Cora wasn't a "thing" or "abnormal high risk" pregnancy.  During these moments I was lost in watching my daughter develop and grow and move so freely.   I could see her suck her thumb, wave her hands, kick her legs.....what I didn't see was the Down syndrome.  I just saw Cora.

During one of the appointments to see Dr. Christiansen in Marquette,Mi. a pediatric cardiologist, it was discovered that Cora had a heart defect.  I was told that this was common for babies with Down Syndrome.  Common?  You mean Cora was finally considered normal?   Praise God...  Wait!,,,, did you just say heart defect?!

Breathe Katrina, Breathe.

I traveled home from Marquette, Mi. in a fog. Everyone had been so adamant about the fact that this thing called Down syndrome was a "fluke". That I had done nothing to cause this to happen to Cora. That is just happens and there is no reasoning for it.

I listened, but deep down I still thought that it was my fault. After all, I was the one carrying the baby. I was the one growing her within me. I was responsible for her nourishment and safekeeping. How could it not be my fault? And now this heart problem...

I was moving through the stages of grief.  I was talking with a Down syndrome group from Traverse City, Michigan.  A woman named of Heidi told me that it was okay to grieve I wasn't having the Gerber baby or the ideal that society pictures a newborn as.  I was depressed, angry,in denial and bargaining all at the same time.  Hearing the news that my Cora was going to be born with Down syndrome and a heart condition that would most likely need surgery was just too much in that moment. Yet, when Heidi told me this....  When she gave me permission to grieve... I was relieved of a huge weight.  I realized that I had been feeling guilty about being scared and sad that Cora wasn't going to be a Gerber baby.  It was ok to grieve.  It was ok.  Wow, what a great gift she had just given me.

I was dealing with all this and a man who would alter from being supportive to ranting about how he wasn't the father and that he wanted DNA testing to prove he was the father. He would make comments about how he didn't want to have a retarded baby because everyone would make fun of him. To the outside world he would appear like the doting boyfriend and expectant father.  Inside the walls of our house he was completely different.  I felt totally alone. 

Alone until I would feel Cora move and then I knew it was two of us together.  Breathe, Katrina.  Its ok to grieve.

 I decided to find out as much as I could about Down syndrome.  Enough of relying on the doctors to answer all my questions.  I started doing my own research.  It seemed to help me.

Here is some of what my findings were:

> 82% of women terminate a pregnancy when they know they are having a Down syndrome baby
> many relationships don't survive the diagnosis of having a child with Down syndrome
> being angry is normal
> gong through the stages of grief is normal (there is that word again)
> you have to find the right doctors with the right attitude to make this a doable adventure
> you will never be the same person

Then I made one of the biggest mistakes during this whole journey.  I googled Down syndrome children and what I found scared me.  I started crying, sobbing with fear.  I called Heidi (the support group from Traverse City) and she gave me the very sane advice to not google, to go to sites that were meant to be read by parents and caaregivers.  Do you know what?  I haven't googled Down syndrome since that day.

useful sites:
www.dsupnorth.org
www.nads.com
www.NDSS.org

These are a few of the resources that I was given during my pregnancy with Cora.  My Ob Doctor, Doctor Wilder, was and still remains a phenomenal doctor and was very supportive during my whole pregnancy.  He was wonderful at answering any questions or concerns that I was having.  A good OB doctor is imperative to this journey. 

Between January of 2011 and Cora's arrival I became well versed in the techinical idea of what it was going to be like to raise her.  Now it was just waiting to hold her and see for myself that she was going to be alright.


Friday, October 14, 2011

The Beginning




It all started on December 14, 2010.  This is the day that I found out I was going to give birth to a daughter that has Down Syndrome.  I already knew I was having a girl and had already lovingly named her Cora Jean.    Every time I felt her move or kick within my womb I loved her greater than the moment before.  I knew I loved her, just like my other children before they were born.  What I didn't know was if  I could raise a child that was going to have special needs.  A child with Down syndrome.

The doctor walked into the room and sat down in his chair.  "Your blood work came back with markers for possible Down syndrome and that was why you choose the amniocentesis and we have the results of the amnio.  I didn't want to tell you over the phone.  YOUR DAUGHTER HAS DOWN SYNDROME...now here is the next step.  You already told me last time that no matter the results you could not terminate the pregnancy so my goal is to get you through this pregnancy and to help you deliver a healthy baby girl."

I couldn't breathe.  Did the room suddenly get hot?  Is it cold in here? Where is the air?
Breathe Katrina, just Breathe.
There was a chance the test could be wrong, right?  I mean, how accurate is 90 something percent anyhow, right? How could I have done this to this baby, this innocent baby growing inside me?
Breathe Katrina, just Breathe.
What was I going to tell family and friends?  What was I going to tell the kids?  What was I going to do?
Did the Doctor just say I wasn't going to give birth to a "normal" baby, then what was I giving birth too?  Oh my God, Oh my God...

All these thoughts ran through my head within a split second.  I remember this day so clearly.  I still sometimes wish I could forget that day, but it was not and can not be forgotten.

I was lost in thought.  My mind was screaming, racing, frozen , all at the same time. It would remain like that for several months.  It was the day that marked the real beginning of  Mama and Cora Jean's Journey.