Friday, April 17, 2015

FIGHT - SURVIVE - SURVIVOR



On Friday April 2nd we were so hopeful that Matilda would come home at the weekend as Dr. Frankfurt said earlier in the week that if she keeps up with the feeds she could come home. Well unfortunately she hadn't gained any weight in the last two days so she definitely wasn't going to come home then. I told my boss that I was starting maternity leave on the Monday (I went back to work 2 weeks after Matilda was born so I could have more time with her later on). I knew that I needed to spend more time with her especially being there to breastfeed. So the weekend I spent the majority of it at the NICU. Then on the Monday Dr. Pierce was back on and said that Matilda had gained weight the last two days so if she kept it up tonight then she would be going home Tuesday. Now a little sidenote I always said to myself I will believe she is coming home when she is in my car. So it didn't really hit me that she is so close to coming home. Well I walk in Tuesday morning and I see Dr. Pierce who said isn't that great she is coming HOME today!!!! I exclaimed WHAT!!!! She said oh I thought you knew! I said no I just got here. Now I know I mentioned in a previous post how superstitious I was so you know I didn't have anything ready for my beautiful daughter. So I told them ok I will be back at 4 to pick her up. Came home got everything ready. Went to toys r us to buy her a celebratory mom a roo, since we won't be going to Disney world till she is at least 4!! She lived in a mom a roo in the NICU!
So with my mom in tow as poor Paul had two inspections and couldn't get out of them. we get up there and start packing everything up. Then Lindsey, Matildas primary nurse came in and I just started getting emotional as she had been with Matilda since day one. She was next door waiting with the NICU team at her delivery,took care of her while she was in NICU and was there now to send her home. I was so ecstatic that Matilda was coming home, but was also so sad as remember I mentioned this special place of support and hope well now we are leaving that. It's almost like leaving kindergarten and going to 1st grade. Your excited  but sad to leave the warmth and shelter. So as we were taking pics Dr. Pierce had said to find her before we left to say goodbye. But they thought she had left for the day. So I went to to pick up car and then go to labor and delivery entrance, where I was meeting everyone. I parked got out and saw my mom, lindsey, Lilla (another wonderful nurse) and Dr. Pierce wheeling Matilda out. It was the perfect way to end Matilda's journey there and call her a Victor! Dr. Pierce said look at her looking up at the sky, its the first time she has been outside. I thought oh my gosh this poor girl finally gets to see the sunshine! We said our thank you's and goodbyes and put Matilda in the car! We then went on to pick up Freddie to let him finally meet his sister. Which he loved her and blushed when he saw her. I think the pieces finally fit for him. I hope he always knows how much he helped his mom and dad through this whole ordeal, more than he could ever know.
Looking back and reading through the blogs I am so glad I wrote this, so Matilda can know how special she is and how much we all had to fight to be together.
I have a friend who is an only child but that is only because she lost the other two siblings during their childbirth. I asked her when I found out about all of this how her mother got through it. And she emailed me back and said my mother use to always say you have to go through hard difficulties in life, they make you a stronger person and then you share that strength with others so you can support them. I can remember talking to different doctor's before Matilda was born and I always knew she would make it she was just so feisty as I mentioned before. And when they would tell me something sad or difficult I would always think in my head well you have never met my daughter........Which I have a feeling I will be saying a lot of in the future.
I have to thank everyone for their love and support during this journey! We are indebted to you all!
And to our gorgeous daughter (who is sleeping on me as I write this, actually it's where she has been since April 7th since coming out of the NICU)
Matilda you are so amazing! Your Dad, brother, myself and the rest of the family is so proud of you!

I will keep updating this blog as Matilda' s next journey of getting everything followed-up and checked on and living a normal life starts!!


Dr. Haddock

Dr. Frankfurt

Dr. Pierce
Ms. Christy - Matilda's OT
Ms. Lindsey
From left. Me, Lilla, Dr. Pierce, Lindsey

Saying Goodbye for now

Big Brother
Victor!!!!


Wednesday, April 8, 2015

To the Parent

When we found about Matilda and her condition. I went home and looked at every thing there was on the Internet about CDH! This included tons of blogs which you never should do. Every time we would have an appointment with a doctor in the weeks leading up to Matilda's delivery I would go home and Google. Which I would then limit myself to just positive blogs but would slowly go back to the more fatal blogs. I would compare information that we had about Matilda to what they had on their blog as if that would predict an outcome. As the docs could never say it will be ok! Which I never could understan d. I once read that no CDH baby is the same they are like snowflakes each one of their own design. Now looking back I know that is the only thing that I should have listened to. And that is why doctors could never say everything would be ok. Because this congenital anomaly is unpredictable. Matilda always knew the ending.
So now that we have hit the high hills of this roller coaster I can calmly say to the expectant CDH parent that our children have there own agenda. I believe that medicine can only take them so far. The other day we were thanking one of Matilda's neonatologist for all he had done and he said "hey she did all the hard work!" Which is absolutely true these amazing doctors and nurses can set them up for success. When I was pregnant with Matilda she seemed so feisty and I knew when she was handed this "sentence" that she would kick some butt and take names!!  I just want to say there are no comparisons, statistics, blogs that can seal fate.