Ramblings of a CHD mind

I have been busting my bum for weeks to figure out ways to advocate not only for my daughter but for all CHD families I have met over the past 3 months especially. When I was pregnant with Sevanna, My Mom and I did alot of reasearch so I could be armed in making the best decisions for myself and Sevanna once she arrived and began her fight for survival. I wanted to always have knowledge because for me that equaled hope. I didnt take alot of graphic pictures of Sevanna when she was first born because I was just too consumed in being with her as much as possible. Not to say that there isnt any floating around, there just arent too many of her initial first days, weeks and couple months of life.

Your probably wondering what point im getting at.. Well I'll tell you.. When I wasnt caring for Sevanna, I had my head buried in books, magazines and websites trying to keep that knowledge up. Then I did something to me that I feel was very dumb. I let my guard down, I felt 'safe' and that means for a long while I stopped questing for knowledge becuz it was nicer to live in my "its all good" bubble. That doesnt mean I stopped being Sevanna's best care provider & advocate - it means I let myself get a tad too hopeful. I banked on Sevanna doing well because thats what her Dr's pushed upon me.

Since her fontan in March which took over a year to have happen, I met some people that reminded me of how blessed I am that Sevanna IS still here. Because of their particular circumstances, I decided to come back to the world of knowledge ALONG with a MAJOR desire to advocate for those who who no longer have a voice by telling Sevanna's personal story which I have held private for so long. I do it because she inspires people. Especially those that get what a miracle it is for each day we have with our CHD babies & children, and even any other parent I talk to understands on some level. In telling her story though I want it understood it is not done for exploitation, sympathy or to have her gain some type of celebrity status. I use Sevanna's story as a way to put a face to this disease, a way to show its very real and the warriors and angels really are nothing short of medical miracles!! I talk to friends, family, other parents & even strangers about the awareness and reasearch needed to help find answers as to the 'why' this disease affects SO many, yet SO little is done to back the necessary funding needed to provide the answers we as a CHD community so desperately seek.

So please wont you join my mission to help raise awareness and fund much needed research?? It would be nice if one day I could tell Sevanna that what she has endured wasnt for nothing. I want so much for CHD NOT to be the most common birthdefect and biggest pediatric killer currently known in the world, not that I want ANY disease taking the lives of inncoent children, but im sure you know what I was getting at...

Your first open heart surgery

I didnt want anymore surgeries for you. I just wanted you home. Happy, healthy and most importantly WHOLE. No amount of research or discussions can help or take away from the emotions you feel in entrusting your childs life to someone else. I was lucky that we had a good support system and that Dr Ross is as amazing & skilled as he is. We had just got you home for the second time in early April when our phone rang and it was Pat Hebden, the cardiac surgery coordinator calling with the dreaded date for your Glenn. May 8th ~ UGH. We were not fortunate enough to be able to stay at RMH again becuz it was full and so we were booked into the Travelodge.

I remember taking many photos of you with your sleeper open and several family members kept commenting on it. I did it because it was a way to preserve that at one time your tiny tummy was unmarred with scars, it was a way for me to feel like for a moment I could think of you as perfct & whole though internally it is a whole other ball game and that was never forgotten.

The date is Monday, May 7th. Intake clinic day where you are examined & poked at from head to toe. Your disposition to most of it is amazing. You smile, coo and with your crazy hair get alot of smiles and laughs from the nurses & other people in clinic. When anesthesia comes to talk to me I am holding you listening to him go over the IV vs mask stuff, I start to pass out, he grabs you and saves you from falling. I was ok, just very overcome with the reality that tommorow they would really be cutting your little chest open for the first time. I sat awake all that night watching your lil chest rise and fall unscarred. I held you for hours and mostly I prayed. You had oovercome so much in just over 5 months and I just wanted it to be over.

Morning came way too soon. I gave you your last steribath and headed to the hospital with Mike. It was his turn to hold you and he did for the 4 hrs until they took us to the theatre. Then I held you and sat with you while they did the IV line. IV's are never easy on you and this was no exception, it took 5 tries before they got it in. I had tears welling in my eyes as they laid you on the table. I kissed your head like that first surgery day and held your tiny hand. In mere econds you were out and a nurse escorted me to the door. I was kinda drug away because I didnt want to go. The nurse reassured me that you would be fine, I was kinda annoyed that she would so brazenly give me that guarantee. So to the fish tank we went to wait, and wait and wait. Finally when I was truly starting to freak out Dr Ross came by and said you went thru with flying colors and you'd be able to be seen within the hour.

When I saw you my heart hurt. You looked so fragile and had this huge bandage down your tummy. I put my hand on your head and you opened your eyes slightly. I was reassured when a while later while talking to you, you reached up and squeezed my hand. You were in PICU for 4 days, then in ICE observation for 2, they put you on ward and becuz they are always short of beds after 2 days there they ambulanced you to ACH where you spent 12 more days before coming home. I thought FINALLY we'd catch a break and except for checkups avoid any more hospital stays until your fontan which they slated for when you were 2ish. You however had different ideas and we began a new plethra of hospital stays for something complete different...

Thinking about you...

How do I remember every emotion, memory and detail?
How can I truly convey through words how amazing you really are?

You were thought of and wanted before I even knew you were on your way
I carried you through more psyhical pain than most ever endure and more emotional pain too...

I have and will continue to move aside the obstacles placed in your way
for through it all you never placed any boundaries on yourself.

Pregnant with you I was a rollercoaster of emotion, I cried, I hurt, I laughed, I was angry, I was confused, I had hope and was hopeless.. I ran the gamit and still do each day...

Holding you I felt love, peace, fear, any feeling out there Im sure I felt it with you and for you.
Seeing you smile, hearing you laugh, smelling you, first words, first steps ~ all that was comfort to me and proof I made the right choice in seeing your journey though. Never for 1 second even knowing your prognosis did I ever think you didn't deserve a chance to live a life no matter how long with hope, passion & dignity.

You make me get up each day and realize how precious children family friends love and blessings really truly are.
You've taught me tenacity, patience, courage, love & wisdom far beyond your years.

You are strength, crazy, beauty, spirit and happiness rolled into a short, chubby bellied, brown haired, blue eyed ANGEL

You are my reason for living .. reason for laughing .. reason for crying.. reason for trying.. You are a hero, a princess, a tomboy, an individual who makes me want to be a better person.

You are Sevanna Faith LoRee Molloy ~ my daughter, my love ~ my LIFE

With more love & thoughts than any words can express,
Your Mom XoXoXoXoXoX <3<3<3

Scared to death & frustrated too...

It seemed like forever sitting in that waiting room and it's interesting the range of emotions you run. Looking back I wish I had advocated to be in the trauma room while they were working on Sevanna becuz I would have felt less helpless and empty. If it had gone the other way and they weren't able to save her, at least I would have been by her side. I am SOOO thankful it didn't go the other way becuz the pain of not being in there would have been too much for me to take.

Mike went from nervous to a full out wreck initially in the waiting room, he kept rocking saying 'she was black' over and over. I had never seen him that distraught. I wierdly had found some inner peace after my initial panic and was just queitly praying within myself when the Spritual counsellor arrived to speak with us. His stay was breif when he started speaking like Sevanna wasnt going to make it and Mike & I decided that we wanted to be alone. Social work also came down and while the lady was very nice, again in a situation like the one we were facing no words were going to comfort me save for the Dr coming out to say my baby was ok.

A very agonizing almost 3 hrs later the Dr appeared and told us she was in critical condition but that she was alive & as stable as possible. At that moment I felt like I myself had been reborn. I took in a breath that felt like my first breath ever and I saw a light brightly lit in the late night sky. I fell on my knees thanking God and trembling & rocking just sat there crying on the ground. Mike gently helped me up and they led us to the ICU room where Sevanna was.

It seemed just like when she was born, covered in wires, intubated, not moving but I was thankful for one thing ~ hearing a steady heartbeat and watching her chest rise & fall. Dr's & nurses were trying to talk to us but I could only focus on her sweet lil face and long to hold her. We kept a bedside vigil until Dr Harder came in the next morning to outline her plan for Sevanna. One thing was clear, Sevanna would now have to endure a barage of testing to figure out the answer as to why she coded blue.

After EKG's, Echo's, Ultrasounds,X-rays, A Cardiac Catheter, Catscans, MRI's and even a Broncoscopy, no one had the answer we were all seeking. Sevanna was doing well enough to be moved up to Unit 2 (the unit that deals with Cardiac issues amongst other issues) a few day later and we were happy to see her be extubated and getting back to herself. One week after her initial coding blue we were sleeping at home when the phone rung at midnite and it was the hospital. My heart was in my throat and I choked back tears as it was Dr Harder saying Sevanna had coded blue again on ward and was back in ICU. She said for us to rest that Sevanna was stable but you cant expect to get a call like that and think sleep is anywhere in your near future. Again i felt the twinge of failure for not being with Sevanna when that happened, but have to reassure myself even to this day that we had no way of knowing it would happen again.

Dr Harder & Dr Dickie met us in ICU late that morning and thats when she said something I never expected to hear a doctor say. She grabbed my arm with Dr. Dickie by her side and said "Ricki, Sevanna scares us. She is the 1 in a million baby we have never seen before and we dont have the answers we need in order to make a plan for her" Not what any parent wants to hear Im sure, but I do appreciate Joyce being honest with me. I asked what the plan was and all they could say was besides running the same battery of tests over again, to just keep her stable with medication and hope to extubate soon.

I spent most of my time at the hospital knowing that it would be a while before they would move Sevanna up to ward, and even though we lived not far away they were nice enough to give me a room in the family center so I could be there all the time. One night I was sleeping when I woke up with my heart racing, without knowing why I threw on my slippers and ran down to Sevanna's ICU room feeling panicked. I got there just in time to see her choking to death on her own vomit. I freaked right out screaming for help and when the nurse that had been on duty for her came in I shoved him and said I dont fucking think so buddy.

He had been busy sitting on his fat ass packing back smarties talking to the nurse next to him not paying one bit of attention to Sevanna. When they had stabilized her, the nurse who had been standing there with his mouth open stepped up to apologize and all I could do was glare at him and tell him that he could kiss his job goodbye, I'd make sure of it. If he had payed attention to his notes about Sevanna he would have known that she throws up her feeds constantly and that positioning her flat on her back ESPECIALLY while intubated was out of the question as it was the easiest way for her to asphixiate (choke to death). I had never been so mad in all my life and it took me quite awhile to stop shaking & calm down. I called Mike and we decided that he not come in that day becuz he wouldnt have held his temper and it was only one persons neglegience that was in question. HOWEVER having that happen did make us weary and suspicious and I suspect I started questioning the nurses a lil more than was needed, but then again if its my child going through all of this shouldnt I question as much as I want??

It took almost a month but Sevanna was moved back up to Unit 2 and starting to look really good, chubby with serious eyes she also asked who was looking after her questions of her own. She wasnt quick to trust and not happy when anyone wanted to pick her up even if it was to cuddle. I found this hard because I love to cuddle and Teigan was a happy, easygoing baby who loved to be held. Given all Sevanna had been through I understood her reservations becuz everytime nurses or Dr's came in to poke & prod at her I felt like saying "back off and just leave her alone" quite often. They still had no answers to her coding blue twice and were in the planning stages for her trip to Edmonton to have her Glenn repair done. I took things day by day, just happy when Id see Sevanna smile and respond positively to being held & talked to by me and the rest of our family. I did not want to think about the surgery quickly coming up and I gave thanks for everyday that Sevanna would open up her big blue eyes to me saying "good morning angel baby bear"

Finally back home but not AT home

At 12 days old we get the all clear and are preparing ourselves to go back to Calgary. It is a rush of emotion to know that we are going home after everything we have endured thus far. It is also hard becuz although 'home' Sevanna is not with us. She spends her first Christmas in NICU and on New Years day is tranferred into Special Care nursery. It's a big day for her and it means shes one step closer to coming home. I remember what it was like to come into the NICU for the first time with Mike, his Mom and our other 3 kids to see Sevanna. She had been there for a day already becuz she was airlifted home and Mike & I had to drive from Edmonton the next day. When we first see her she is on her tummy with her bum in air covered in cream no diaper with air blowing on her bottom. Quite the first impression to make on Grandma & her siblings.. LOL That is only one of many issues I faced with Sevanna. I didnt get to breast feed her that first week and now at nearly 2 weeks old they think we should try. It doesnt go well so I continue to pump and they bottle feed her as much as possible.

We run into our first of many problems with her. She starts throwing up her feeds especially any mixed with formula. Thru trial and error of about 6 different formulas AND my breastmilk they learn that Sevanna is not only allergic to me but to any formula containing cows milk proteins. They put her on medication for reflux and decide to try to NG tube feed her part of the time to see if that lessens the issues with bottling. Around that same time they figure that she 'may have' a blood infection and so a helpful nurse decides to partially shave off all of her beautiful black hair in case she needs a head IV. Just so you know she spent all of her young life getting poked and having various IV's and PIC lines and it is next to impossible to get blood or anything else from her. That same nurse finds out that the blood culture has come back clear and thinks a simply stated 'well better safe than sorry' will appease the situation.. Umm think not!! I impolitely ask her to shave the rest of Sevanna's head so her hair will all grow back one length and one color.

Sevanna is starting to bottle fairly well taking about 2/3rds of her feed orally but the Dr's are cautious and want us to learn how to put in the NG tube and feed her that way if oral doesnt work. They warn us that if she is fussing after 20 mins while feeding that means there's an issue and we will have have to bring her to the children's emergency immediately. I say I sure hope not becuz after 9 weeks in hospital not including the 6 I was in while still pregnant, I am done and want nothing more than to just take my baby home. They tell us they will discharge us in the next few days and I am literally walking on air. We take her home and its the wierdest yet sweetest feeling to know that I need only look over to her bassinet and there is my precious angel sleeping. I dont think we truly did sleep much the 55 hours we had her home becuz I just wanted to hold her and talk to her and I was loving that except for the NG tube in her nose, there were no other lines, tubes or restrictions holding my daughter back. No monitors beeping, no nurses hovering, nothing but simple joy.

Well that all turned to shit our 3rd day home. All day Sevanna had been increasingly fussy and I was starting to get nervous about what that may mean. At her 8PM feed Mike was holding her and she just plain refused to bottle. I started to gavage feed her and that when all hell broke loose. She started choking and crying inconsolably. Scared I pulled out the NG tube and that seemed to calm her but then she started coughing and turning blue. Panic stricken I told Mike we had to go and you've never seen two fat people run so fast in all your life. Luckily we lived only 5 mins from the childrens and when Mike pulled up to emergency I flew thru those doors. A nurse calmly strolled up to me and asked what was wrong. I said she's a cardiac baby and shes not breathing. Well swoop she took her away like her own ass was on fire. I heard Trauma bay 1 stat being called and watched as seemingly out of nowhere 20 people descended on the room where they had just taken Sevanna. A Dr. came out momentarily to tell us Sevanna had to be intubated and that it might kill her and then he was gone again and I was left standing outside the trauma room wondering what was going to happen to my precious baby.

I couldnt believe after a 9 week fight that she would be taken from me and I felt like my own heart was ripping out. They led us to the PICU waiting area and told us to wait that someone would be out to talk to us as soon as possible.

The LONG road ahead...

I am stitched and stapled up and getting ready to go back to my room babyless. It is such an empty awful feeling. I am told that in about 48hrs provided all is well with her and I that they will take me to the Stollery NICU to see her. 48 hours?? That is WAY too long for me. It takes me back to the prior year when I had Teigan and at 12 hours they came and took her away to the Special care nursery becuz they felt she had mild jaundice and her blood sugar numbers were flucuating due to being seperated from me. I had these yucky leg cuffs on to monitor my blood pressure and I had been awake for going on 3 days. I cried and hovered around my door until the nurses could take it no more and finally brought me to Special care to see her. I remember being scared as heck when I saw her hooked up to monitors and IV lines and she had a needle in her head. But when I got to hold her again it erased the scariness of the situation. In the end I think it might of slightly prepared me to face what was ahead with Sevanna...

I ask the nurses what it would take to see Sevanna sooner and they tell me as soon as I eat and drink something and do 'both' things in the bathroom I am free to go. Imagine their surprise when 3 hours later I am dressed with shoes on raring to go. They call us a cab and about 15mins later we are standing outside the NICU doors. The doors open and we are led inside to a quiet, dark area full of tiny bassinets and many many monitors constantly going off. We are told to scrub up to our elbows and led to Sevanna's area. Its hard not to gasp when I see her. First off she has a mohawk.. A mohawk yes you heard right. Secondly her lil body is covered in wires and tubes(23 all told) and thirdly the nurse warns me that she has been medically paralysed to prevent her from moving. When I ask why this is necessary she scares me with the answer that if Sevanna were awake and freely moving around that it would affect her heart to the point where it could stop from overstimulation. I ask about holding her and am told the same thing, I can not hold her until they know her surgery situation and know that it will pose no risk to her. I am told for the time being I can take 1 fingertip and once an hour brush my finger on her shoulder (one of the only places not covered in stuff) It is the worst most helpless feeling ever.

Good thing about the NICU is the families are all the same.. and i dont say this to be facecious.. We are all scared, tired, moving on autopilot and just doing what we can to make it from one day to the next. When your child is in a situation like this days just run together and leaving the NICU reminds you that there IS still an outside world. I meet some amazing people there. One couple Melodie & Christian are there with their precious son Noah who was born just 3 days prior to Sevanna. Like Sevanna he has HLHS and unlike Sevanna they had no idea. She delivered him at the Foothills (where I would have delivered as well) and they were airlifted by STARS hours later to the Stollery. There is another girl who was at RMH with me, who delivered the same day as me and her sweetheart of a son Riley is placed beside Sevanna. His issues are different, he is there for Gastro-intestinal stuff as is the little one 2 bassinets down whose Mom has yet to come see him as she was still fighting for her life back in BC. His grandmother keeps a 24hr vigil beside him and leaves only to pee and refresh her coffee. * I am sorry to those whose names I have forgotten but it does not erase my care & concern to this day for how your families are doing, there is alot of time I spend reflecting and reminiscing about my time there with Sevanna and wondering how those I met are carrying on today*

At 3 days old they tell me Sevanna will be going for surgery the next day. The normal process would be a Norwood shunt but becuz Sevanna's anatomy is anything but normal they adjust the surgery for her and it is called a closed rightside BT shunt. What that means is that they are not opening her chest cavity at all. They made an incision about 6 inches long under her right armpit and went in to do the repair thru there. What they basically did was insert a tiny balloon like device that will act like a ventricle to pump the blood for her until they get her to 6 months old where they do part 2 of the surgical repair.
The next day we are waiting for her to go to surgery and we get told that she is bumped for another baby. The baby is Noah. I hug his Mom & Dad tight and wish them the best of luck. Noah comes back about 6 hours later and it looks like all went well for him. We are then told it will be her turn tommorow but she wont have Dr. Rebeckya, she will have Dr.Ross. I am somewhat dissappointed as Dr. Rebeckya is the head of the team and I have heard great things about him. When we meet Dr. Ross though my anxiety dissapates becuz of his calm no nonsense matter. I like him alot and the fact that he holds my gaze while answering all my questions (most of which im sure were dumb) and doesnt treat me like Im stupid, really helps my trust level in him. We go back in to spend time with Sevanna and I am in the pumping room talking to the Moms. Melodie is there and she tells me Sevanna will be all right and to have faith. I laugh and say thats actually her middle name.

That night for the first night in a week we go back to RMH to shower and prepare for the next day. I am quiet when other families approach us wanting to talk. I realize that its wierd becuz they know we are 'here' but since mid october we havent psyhically been there. The date is December 2nd, they day before she was due. We go back to the NICU in the middle of the night and this nothing new for the staff. Moms and Dads filter in and out at all hours and we stay by Sevanna's side until she is called for surgery early that next morning. I kiss her head as they wheel her out, then outside the NICU it hits me and I fall apart. Melodie & Christian come by on the way in to see Noah and she takes off a purple bracelet and puts in on my wrist. She hugs me and says have faith, She will be ok. I look at the bracelet.. It says Miracles do happen and it has the Stollery bear on it. I add it to my collection .. The day I arrived in NICU the social worker gave me a pink one that says Live with heart. Since then at the ACH I have added a White glow in the dark one that says Glow for kids and a Pink justice one that says Excellence. These bracelets have never left my wrist and I quite often get strange looks about them. So when you see them in my pictures or in person .. Now you know why I wear them and what they symbolize.

About 7 hours later Dr. Ross comes to talk to us and tells us that everything went very well. I am just barely registering his words, all I want is to see my baby. About an hour later they bring us back into the NICU and for the first time ever I get to hold my daughter and see her eyes open. I should tell you that when Sevanna was born and I was being stitched and stapled that Dr. Dinkle was rude to me even then. He said I should get my tubes tied and when I refused gave me a look like I was crazy. He said that it wasnt medically safe for me to continue having children and due to the fact that I have been unable to conceive again Im wondering if he didnt just do it anyways. IF I find out thats the cause of why I havent been able to have another baby let me just say one word ~ LAWSUIT!!!!!! Anyways Mike got something special that I never got.. He was allowed to go outside while they were getting Sevanna ready for transport and he got to hear her cry, see her eyes open and they even allowed him to put his hand in the bassinet and let her grip his finger for a minute. Am i bitter about that?? Um yes especially when they are giving me my daughter to hold for the first time still all tubed and stapped to a board and they say "oh you never held her before now?" and when I say Yes they then tell me I could have held her BEFORE her surgery... Ohhhhhhh I tell ya!!! But it doesnt take away from that amazing rush of looking at her eyes and holding her finger and stroking her hair...

We are told if she does well that within a week they will stork her over to the Foothills NICU and she will be good to be taken there of until we can bring her home. I am sooo happy to be told that even though I am happy becuz the day after Sevanna's birth my Mom brought Teigan to Edmonton to be with us and she gave me a reason to try to be happy everyday. For a 15 month old to be stuck in NICU for most of the day Teigan was amazing and she charmed all the nurses with her ability to talk so well and her patient sweet temperment. She lived for the moments where she like me could see her lil sisters eyes open and could talk to her and tell her she'd be ok.... I am starting to get my piece of mind back and things are looking good.

My time at the Royal Alex

I am in total and utter shock. Another decision is out of my hands and I am wheelchaired through the underground pedway and admitted to the hospital. Aint the Hy's centre grand? I am put on the pre delivery ward (whats its really called I cant remember right now) and just feeling confused and sad. The nurses are nice enough to put me in a private room and despite the fact thats its not hospital policy to do so, they bring in a cot so that Mike can stay with me. He jokes that after 6 weeks on this thing his back will hurt worse than mine but Im not so sure. Despite our stresses and issues I am glad for his company. To have to be there alone would have been completely unbearable.

They have me on constant checks and monitoring and pretty much bedrest to keep care of my diabetes and her heartrate. Dr Tenkle mentions that I *may* be able to labour naturally but a whole neonatal team would be in my room at all times. With being unable to walk much due to all the injuries I have sustained, Im not too sure I'll go into labour on my own. At 37 weeks that too becomes a nonissue when a night nurse doing a routine bloodpressure cuff yanks on my arm a little too hard and fractures my right elbow. I can not believe it, Im now to the point where I am so crippled I cant even do the simplest things we all take for granted, IE - wiping my own butt. I am righthanded and this truly f'in sux. Imagine your humiliation at needing your spouse or the nurse (a complete stranger) to do this for you, take the thought of how you would feel ~ multiply it by a billion and there you have what life was like for me. They wanted to do surgery to repair my elbow but I was too close to delivering and they could do nothing with her complications that wouldnt greatly put her life at risk. Instead they half casted my arm and told me to plan for surgery post delivery.

Im am uncomfy and take solace in my twice daily escapes to the basement cafeteria where I waste as many hours as possible away from my room. You'd think Timmys after 6 weeks would be a little much but today I am still a fan, plus it was the cheapest of the few places there to eat. Im running out of clothes and other necessities so Mike sneaks me out and we go shopping with me wheelchair bound with my huge baby tummy. Quite the adventure but it felt great to get away. We are running out of money and at that time my CTB cheques were mailed out to me, so Mike and I plan a sneaky lil day trip to Calgary to get the money. Dont worry since then I got smarter and now have most things direct deposited.. makes life much easier. I am glad to see my kids but it hurts tonnes to have to leave Teigan again, at that time she was just learning to walk and really didnt understand why Mommy kept going and leaving her behind.

I also start to redwell on why she wont survive a 30 minute STARS air ambulance ride but a 10 - 15 minute ground ambulance ride from the Alex to the Stollery NICU will be no problem. We arrive back in my room late that evening and all I get from my nurse is a strange questioning look but she says nothing. In retrospect I wonder why nothing was ever said.. when you have a patient like me you'd think an 9 hr absence would matter to them. Futhermore upon needing to go down to ultrasound and carrying my own charts, I am really hurt to find on a document that Dr Tenkle has written that according to him I am "morbidly, morbidly, morbidly obese" and it is underlined several times and even has exclamation points on the end. Now yes I know Im overweight but I was only 240ish pds at my time of delivery and over 40 of that was my Sevanna belly. That makes me even more angry at being stuck with him as my OB.

I am angry, sad, exhausted and sick. This leads to me having a flow of andreniline and I actually have the strength to pace back and forth infront of the nurses station with my walker, muttering to myself about what it would take to get some decent help around here and just how much I dislike Dr Dinkle. My current nurse somewhat overhears me and comes to ask me what is wrong. I adore her, she is my favorite nurse and one that seems to truly care. I burst out crying and tell her about the constant pain, not getting comfy or having slept for 6 days, I tell her about being unable to eat and lows in oxygen Sevanna has suffered as a result of blood sugar constantly dipping under 3. When I am through my tirade she hugs me, strokes my hair and says enough is enough, I can no longer see you like this, I am going to find someone that can help you. I mutter stupid Dr. Stinkle under my breath and she laughs loud and long. She says your not the first to be upset with him and stinkle is a new one. I tell her I also call him Dr Dinkle, and Dr Stankle. Oh my goodness she says, you must really have a bone to pick with him. Yes I must ...

An hour later she is back from talking to the Dinkle himself and they have found something that will knock me out allowing my body to rest while posing no harm to Sevanna. I am all for it and wish now I could remember the name of it cuz I sure culd use the odd hit even now... LOL. Sweet dreams says my nurse as she empties the syringe into my IV line and soon I am out cold. I wake up 20 hours later to find Dr Tenkle himself sitting on my bed waiting to ask me how I feel. He says due to my lack of starting active labour and for her benefit he has picked a day to deliver Sevanna, that day being 5 days away. He says I will be the first case that morning and to be in the waiting area for the operating theatre at 730AM. I head up there only to be postponed to 2nd case and now Im more anxious than ever to have this done. They come to prep me, and give me a spinal and the clearest thing I remember whilst being cut open was not his concern for me but Dr Stankles concern that his deli order for lunch would be screwed up.

A few minutes later I hear a soft cry and get the millisecond momentary joy of him holding up Sevanna before immediately whisking her away. I barely can focus on her and she is already gone. I dont get to hold her and my own heart is aching. A few more minutes later a nurse hands me a poloroid of a darkhaired chubby cheeked girl and tells me shes beautiful.

It is 10:25 AM on Monday, November 27th 2006. Welcome to the world my angel Sevanna Faith Loree <3

The breakdown begins :(

So im having a bath and getting out of the tub at 22 weeks when I fall. It hurts. Alot. Upon examination im told I have sprained my left shoulder and my right knee.. Great im a gibble and have no help for Teigan who needs me to take care of her ~ Save for my Mom who has always taken on a very loving hands on approach to being a grandparent. My Mom was my only constant support while I was pregnant with Sevanna. Mike was too wrapped up in supporting our family working horrendously long days and the older kids were deciding to keep me busy with the normal school & friend issues that all preteens nowadays have... I am allowed only codeine and it does nothing to help.

At 25 weeks 4days we go to have a discussion with my OB ~ Dr Mahalingham whom I absolutely adored and she says to me, Ricki to our knowledge a child as severly compromised as yours is rarely has a great survivial rate and we feel if you continue on compassionate care is the most viable option. I ask what compassionate care is and when I find out its standing by to watch your baby just die I am NOT impressed, she further insults me by telling me I also have the option for a late term abortion but only 48 hrs in which to decide.. I look at her and she apologigizes immediately saying she knew I'd never consider it but I have to be told all of my options. I start to really wonder what if anything is Gods plan for my baby. They tell me if I have her and she survives the first week then she has the option of going through a 3 tiered surgery to improve her heart function as much as possible. They also tell me with all of her conditions her life expectancy is only 30 years old and she will never have a "normal" life. Then they tell me about the option of a transplant and say they "prefer" me to choose the surgeries as they want to be able to examine Sevanna's unque anatomy. Its almost like she is a science experiment to them and I want to say Would you all be this gung ho if this were YOUR child?

Im 26 weeks and at Chapters, I am trying to pick a fitting first name for baby girl knowing her middle name will be Faith Loree (Loree is my Moms middle name and all my children have paternal & maternal grandparents as part of their name) I read a baby name book in which the defination of Savannah doesn't say "a wide open plain" as most baby name books do.. Rather this defination says Savannah means "Open heart" I believe then and there her name was cemented in my heart. Later that week I fall again and sprain my right ankle and break several toes. I am in agony. Still battling in court, still stressed out I am now having problems with headaches. Doctors tell me they are not due to my diabetes and unfortunately theres nothing I or they can do.

27 weeks I head to Edmonton to be examined by the pediatric cardiology team there which included my doctors as well as Dr's Smallhorn & Dr West. I get my first glimpse of Ronald McDonald House and make some long lasting friendships. I also meet Dr Mahalinghams replacement for me in Edmonton, Dr Johnathan Tenkle. I take am immediate disliking to him when his opening statement to me is " Anything Ainsley can do, I can do better" who says that to someone they have just met when I have known and implicitly trusted my OB for over 2 years?

28 weeks I am having troubles eating, I encountered this with Teigan too and got to the point where I needed liquid IV therapy and it SUCKS :(

30 weeks for all her troubles Sevanna is looking good as can be

33 weeks I fall yet again and this time I slip the 3rd disk in my back, I can barely walk and the doctors here decide to make the transfer to Edmonton happen immediately as in im going to Edmonton TOMMOROW. I cant believe it, in just 24 hrs I have to say goodbye to my 15 month old and all my other family and be stuck in Edmonton for the long haul. Luckily we get booked in to RMH again and there are about 5 other Moms expecting in the house with me. My due date is December 3rd. When I get to Edmonton to book my OB appointment it is early October, they tell me can I come in on December 9th? I say sure if you dont mind that that is 6 days PAST my due date. They give me a new date 2 weeks later and im basically a prisoner in my room at RMH waiting to be seen by Dr. Tenkle. I get to the appointment which took 4 hours in total to be told at the very end when I am asking when I'll come back to being told Oh you dont get to go back to RMH we are admitting you to hospital right now, theres actually an underground pedway that connects us to the Royal Alex and they are expecting you....

What happens next??

So here I am on my 29th birthday wondering what I did wrong to deserve news like this.. The most information the specialist could give me was that the babys ventricles werent developing properly, she appeared to have a large hole in the ventricle they could see and various other complications that they couldnt yet determine. My Mom asked me what I intended to do. I told her that I would see it through no matter what and that I hoped my faith would carry this baby to life, what kind of life would she have I didnt know but I felt that she deserved a chance. I knew right then and there that part of her name would either be "Faith" or "Hope" because I needed both to move forwards in dealing with this pregnancy as well as other issues I had on my plate.

Many of my friends had their kids young and I was always jealous of that. All my life ever since I was a tween all I ever wanted to be was a Mom ...Runner up to that would've been a Doctor, Teacher or Singer... LOL When I lost my son in 2003 due to my own neglect I couldnt have been more shattered inside. My belief in 'God' was lost and I was angry and depressed for a long long time. When I was able to pick myself back up I reasoned with him that should I be given another chance I would parent the child to the BEST of my abilty no questions asked, no matter what circumstances were thrown at me. Well he sure tested with Sevanna... Anything that could go wrong DID and then some...

I started going to the childrens hospital to meet with Dr David Patton a world renown inutero diagnostic specialist, from there I met Dr Frank Dickie & Dr Joyce Harder - Calgary's top pediatric cardiologists who have given my daughter amazing care for all her time spent in hospital.. Many more Doctors from Edmonton were to follow and I give so many thanks to Dr Jennifer Rutledge, Dr James Coe and most importantly Dr David Ross who is the surgeon who has saved Sevanna's life and ensured that she is still here with me today.

Because I was lucky enough to know what I was facing, I was lucky enough to know what I could and couldnt do... One major thing was I could not take any painkillers, they would have stopped Sevanna's heart immediately. So what do you figure may have happened? You guessed it ... my body decided to start breaking down.

On top of my body breaking down I was going through a very stressfull trying time with my new husband and his step children and their Biological Mom who after a 8 yr absence all of a sudden decided to be a part of their life just because she found that that Mike, Courtney & Brandon were happy and moving on.. We went through almost 3 years of court battles and im happy to say that that particular stress is finally behind me, mind you many many things have changed since Sevanna was born...

In the Beginning...

I was in hospital with pneumonia when I found out I was pregnant with Sevanna. I had a 5 month old daughter Teigan and 2 older stepchildren at the time.. Sevanna's Story is long, interesting and not always pretty but it is a story of hope for those who have or had babies or children living with CHD.

How it alll started:

After they decided to admit me due to spots on my lungs I was given prednizone & morphine along with a chest X-ray. At the time of the Xray the tech asked me about the possibilty of being pregnant and I laughed at him. I said no way I already have a 5 month old! Well as the day drew on for whatever reason I couldnt shake what the tech had asked and so during a bathroom break I decided to do a test.. or 7 .. all came back positive right away and I just couldnt believe it. I told my nurse and she did 3 more tests just to confirm. From there it was time to get ultrasound involved and thats where I ran into my first problem. I had 2 doctors looking and neither wanted to confirm how far along I was.. I even went thru an internal (OUCH & YUCKY) ultrasound to get a clearer answer. One Dr pegged me at 4 - 6 weeks and the other Dr said 8 - 12. Because they couldnt agree they decided to say I was 5 weeks and told me to carry on from there.

I have diabetes, Poly-cystic ovarian disorder and im obese. I had blown my endcrinologist away by even having my first daughter the previous year as I didnt manage my diabetes (except in pregnancy) and she mentioned until I took care of my health and myself my chance of conceiving was slim to none.. I lost a son on August 1st of 2003 at 22 weeks for this exact reason (not taking care of my health).

I booked a 10 week ultrasound and was dissappointed with how that tech treated me, I didnt get to see the baby on screen and she kept giving me the wierdest looks. Im not one to mince words and she was making me feel uncomfortable so I straight out asked her what the problem was. She asked me how far along I was supposed to be and I said 10weeks 3days. She actually snorted at that point and feeling very miffed I asked again what was wrong. She said honey your more like 14 - 15 weeks along and you need to book into Maternal fetal medicine right away. That meant that 1 doctor who had said I was 8 - 12 weeks had been correct and the "pegging" me at 5 weeks was WAY off...

That was fine by me, I was used to being followed by MFM due to my past pregnancy and the need to especially monitor diabetes in pregnancy. I booked an appt on my 29th birthday for what I thought would be a routine 18 week ultrasound where I would find out the sex and how to manage my insulin intake. Imagine my surprise when again I didnt get to see my baby on the screen or hear its heartbeat.. My Mom & Teigan were with me and I never imagined the terrible news I would get next..

This particular technician also made me worry when after the ultrasound she ran out to consult with the specialist. He came in looked at the pictures and they both dissappered again. About 10 mins later he came back in and this is where her story truly starts.. He said I have some good news and not so good news, which do you want to hear first? I was just in shock so he quietly said the good news is we know the sex.. its a little girl, the not so good news is that we think there is something wrong with her heart.. Again not one to be indirect I said you think or you know? He said we know but what it is is what we are uncertain of..we need to book you in with the inutero dianostic cardiac care team right away so you can make some decisions. I said ok and more appointments were arranged. I left the clinic to go outside to go outside to see my Mom who had my precious 9 month old Teigan and who were both smiling until I saw them and started crying... My Mom asked me what was wrong and I said I couldnt have had a shittier birthday, the baby is another little girl and theres something wrong with her heart. From that day on my whole life changed....