May 28th, 2012

Today I was on my way in to see Delainey and all I could think of was taking her home and how much driving 34 minutes everyday to see my daughter was starting to take it's toll on me. When I got to the NICU I walked over to her crib like I always did, put my purse down and picked her up. I had probably held her for almost an hour when a nurse said "feels weird to hold her without all her cords and monitors hooked up to her huh?" I felt so stupid, I hadn't even noticed!!! The nurse then went on to say, "I overheard when they were doing rounds this morning that Miss Delainey may be discharged today" I can't even explain how that made me feel, I instantly texted her daddy and let him know, I waited around til the head nurse came in and she told me the awesome news, we could bring our baby girl home. Praise God!!!

May 14th-16th, 2o12

Monday; Today I was unable to go in to the city to see Delainey so I wasn't able to get the results for her eye exam over the phone but I have some hope as all the nurse was able to tell me was that her eye was not as bad as the Dr had expected.....not exactly sure what that's suppose to mean but Im trying to be optimistic and trust in God. Wednesday: Today I had a specialist come sit down with me during my visit with Delainey and discuss the possibility of Delainey having a rare chromosome disorder called Trisomy 13. I really don't know what to say at this point, I'm sooo beyond angry, like the next Dr. that comes into my visits with my daughter and tells me anything negative I'm gonna knock in the face! I've HAD ENOUGH!!! How am I suppose to stay positive when every

time I tell myself to remain calm and what not, I got another blow to knock me down! I also HATE that I have to go through all of this on my own, I wish that her daddy would be able to take off work some days and spend hours in the hospital with Delainey and I. But I know he needs to bring money in, now more than ever.......I'm so discouraged.

More overwhelming days

May 9th, 2012 Today was a rough day. I was told that her left eye is not normal. Its abnormally small and the Dr believes she could be blind in that eye. She cannot open it, they have to pry it open and once opened it is covered by a gray haze and she does not follow the light or respond to any stimulation. I was soooo mad. All I kept thinking was 'What next?!? Why is all this sh*t happening to her??' I just didn't understand and personally I'm sick and tired of hearing negative news! She will be getting an eye ultrasound on Monday. I'm going to be doing a lot of praying this weekend. May 11th, 2012 (Friday) Nephrology came by today and all her Delaineys blood work and test results came back normal! Her kidneys are doing GREAT!!!! Thank God! Now I just have to wait for that dreaded eye exam Monday. May 13th, 2012 (Sunday) Delainey is putting on weight and she looked really good today when I went to see her. She made me a Mother's Day card and the nurses put her lil footprints in the card with baby pink paint, it was soooo cute. She even still had some paint in between her toes when we came to see her lol.

May 4th, 2012

I stayed home yesterday, I was encouraged by the nurses and staff to GO HOME and rest because I was no good to Delainey if I wasn't sleeping or eating. I felt HORRIBLE sitting at home knowing nurses are taking care of my daughter and that I'm not there to help change and feed her. When I got to the hospital today I was informed that the ultrasounds for her kidneys came back and the results were saying there were NO CYSTS!!!! 2 days ago they were covered! I had goosebumps cover my body and I KNEW the prayer for healing had been answered! I was almost crying. Her kidneys are still damaged and always will be and they still carry large deposits of phosphate so the Dr.s and her dietician changed her formula. She also went for a brain ultrasound today and everything came back normal (Praise God for that too) I was told that these results could change but for now that was fantastic news! Delainey now needs to just learn to feed without relying on her feeding tube and put on weight in order to be discharged....I will be adding that to my prayer list

A little bit of faith

Today I had Delainey's Gramma Agard and aunti Erica come join me for when the pastor came to lay hands on Delainey. The NICU nurses were incredibly kind and understanding and allowed us to sneak Erica into the room (we were only given 4 hospital bands to give to family and Erica didn't receive one) The Pastor came in today and was so sweet to Delainey, I shared with him all that I knew at the time more so concentrating on her kidneys and the fact that her left eye had yet to open and we were a little concerned. The pastor said a beautiful prayer and it made me cry, Delainey seemed to be at peace and it left me speechless. After Gramma and Erica left, I spoke privately with the pastor about everything I had been going through and how it was putting such a strain on my relationship with her daddy and how I was so overwhelmed and feeling such horrible thoughts at times like caring about what others would think about my daughter and thinking she was anything less than perfect. He was so kind and comforted me as I cried. He told me that 'special babies' are only born to 'special people' God knows certain children require more attention and more love than others and the pastor said he could sense such an intense love I had for her and that he knows EXACTLY why God put her into my life, its because HE knew I would love her unconditionally, accept her 'flaws' as what makes her remarkable and that no matter what happens, my work with her will be rewarded by Him. Not that Im looking to be rewarded but it made me feel soooo good. At this point all I wanted as a reward was for God to heal my daughter and bless her with a healthy, normal life.

I left the hospital today feeling a bit discouraged though because I was informed that Delainey would not be discharged until for sure her due date, it's more of a goal date, it doesn't mean she will be released at that time. Also got told that she will only be going for surgery for her lip around 4-6 months instead of 1-2 months! I'm very discouraged, I just want her to be treated like every other normal baby and I want my child to fit in, I'm terrified what people are going to think about her. Judge me all you want but until you have a child that has abnormalities you can't say you wouldn't feel the same. I'm not ashamed of my daughter but I DO fear what people are going to say about her when they see her....

More testing

April 30, 2012: Delainey had her ultrasound on her kidneys today. Her kidneys are still enlarged and small cysts were seen. I'm waiting to hear from nephrology (kidney specialists) and the Genetisist (a specialist linking common abnormalities) like her single artery umbilical cord, cleft lip and pallet and kidneys. She met with cardioligy and had a cardiac echo done and they concluded that she has a small PDA (in utero patent ductus arterous - aorta tapers off and could easily gave blood clots ) and a small ASD (Atrial septum defect - small hole between the two upper chambers of her heart) Things just seem to keep getting scarier and scarier, I never would have imagined that THIS would be my experience with my first baby.

May 1st: We got some results from her kidney tests today and her creatine levels went down and her kidneys are doing better. I was so proud of her today, she drank 30cc's for me at one feeding and 20cc's at her second. That's a lot for her! Today her Gramma Agard came to visit her for 2.5 hours and Delainey loved that! We are getting the pastor to come lay hands on her tomorrow and pray over her kidneys.

April 27th, 2012

I had finished my closing shift at 10:00pm and went home. I ran a bath, made myself something to eat and finished setting up the baby`s nursery. I had posted some pictures of her nursery on my facebook page and made a comment about `all we needed now was a baby`. Little did I know she heard me or somehow read my comment though my belly and took me seriously. At 1:45am I woke up to a gush and I had no idea what was going on, I was in no pain and I hadn`t been briefed on what to expect when going into labor....I mean come on, we had 2.5 months to go yet, I wasn`t too worried. I woke up my partner and we went to our local hospital where they did that ruptured membrane swab and yup, fully ruptured. So now excitement had set in for both of us, although early we were sooooo excited to meet our little girl. I was sent to another hospital in Winnipeg to get induced and where the Doctors and staff were better equipped to handle a baby with kidney problems and other possible issues. After 17 hours of labor, 25 minutes of active labor and 5 pushes, our daughter was born. They quickly rushed her off to a table where my partner (her dad) walked over to see her. I could see on the look on their faces that something wasn`t quite right, I was terrified. After cleaning her off and clearing her lungs they asked me if I wanted to see my baby, of course I said yes but there was some hesitation. Now this may upset some of you but its only the truth and my feelings in that MOMENT and until you go through something like I had, don`t judge. When my daughter was placed in front of my face I was disgusted and mad, thinking to myself `where is my baby, this can`t be it` Now that I`ve admitted to sounding like a monster please know I prayed and prayed for forgiveness in the following hours for the thoughts that I had previously. I think it was just the shock of it all. Anyways, my daughter was born with a cleft lip and palet and t wasn`t detected on any ultrasounds so it was a huge shock to us. I thought it was the end of the world. I was so upset and I was worried about what people were going to say about her, what would they say behind our backs. Little did I know, this was the least of my concerns right now......this was just the beginning to a whole new world