Saturday, May 22, 2010
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.