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.