The Peanut Gallery

Thursday, October 23, 2008

1st Week Home

Thursday, October 23, 2008
So....I know I have been slacking in the blogging department, however, I have had a lot on my plate this last week. Oh the changes that have occurred in our lives in just one week. For those of you who did not know it Kennedy was released from Loma Linda's NICU on Thursday, October 16, 2008. After 64 long days in the NICU we were finally free. I couldn't believe it!!!! The discharge process was long and arguous. Brian and I arrived at the NICU at 1:00 and did not walk out the door with Kennedy until 5:30 p.m. Yep, that's right Kennedy was about to experience fresh air. She was going to be coming home!!! Brian drove as I sat in the backseat with Kennedy. She had her eyes wide shut the entire drive home. We were greeted at the door by my Mom, Dad, and sister. Little did we know that our lives were about to get more complicated then we could have every imagined.

Kennedy was sent home from the NICU with no REAL DIAGNOSIS. To date the only for sure thing that is wrong with Kennedy is that she has Cerebellur Hypoplasia, but no one knows how this occurred. In addition, no one knows why anything is truly happening. They have no idea why she has high blood pressure, why she is so hypotonic, why she is unable to hear in one hear, why she is still so jaundice etc....Kennedy was sent home on a strict schedule with a NG tube and on 7 different medications. Kennedy is taking two different blood pressure medications, a liver medication, phenobarbital for seizures and cholestasis, iron for her anemia, multi vitamin, and medication for her thresh.

I have only been home for one week and I am running on empty - between administering medications, feedings, pumping, and all our doctors visits (both in house and outpatient visits) I don't know how I am going to keep up. My daily schedule is as follows: Feeding Kennedy via bottle and feeding tube, administer meds, pump, and clean everything up. By the time I am done with this whole process I have to do it all over again in an hour in a half. However, I wouldn't trade it for the world. It was so important for me to take Kennedy home to be with me and Brian. God forbid something is to happen, I want to be able to spend as much quality time with her as I can.

Having Kennedy home has been great. However, the security of being in the NICU is no longer. I feel so much more vulnerable. I don't have as many people to talk to that really understand what is going on and that can relate to what I am going through. My biggest fear about having Kennedy outside of the NICU is that something might happen to Kennedy and there will be no way I can help her.

We have had some troubles since we have been home. Kennedy has really digressed on her feedings. Before we left the NICU she was eating about three full feeds on her on. Since we have been home we have yet to get her to take an entire feed. on average she is nippling 30 cc's (1 ounce). I am not sure what the problem is but I just hope I am able to work with her and get this turned around. If she does not pick it up on the feedings within 3 or 4 weeks we will have to take her back to the hospital to get a G-tube surgically placed in her stomach.

I want to thank everyone for all their prayers. Kennedy has really come along way. She still has a lot more to conquer and overcome so please keep the prayers coming.
There are some people that I need to thank;
  • Breanna for the wonderful balloons put on our mailbox for Kennedy's homecoming
  • Mom for helping me out through this entire ordeal and being by my side every step of the way. I loved Kennedy's homecoming balloons. You are a great laundry cleaner too!!! I hope I can be half the mom to Kennedy that you are to me.
  • Aunt Donna - thank you so much for cleaning my house so that I bring Kennedy home to a clean and refreshing home. It also allowed me to be able to focus on Kennedy for the first week instead of having to deal with other nonsense.
  • The Fellman's for the wonderful flower arraingement. I loved them!!!
  • The Smith's for coming over and cooking us one of the best home cooked meals we have had in a LONG time.
  • To WHOEVER got us the edible arraingement!!! There was a card but no name - we love it!!!
  • Dee & Randy Smith for the best outfit in the entire world. I love peanuts "my little peanut" outfit.
  • Aunt Susie for the best poem I have ever read. You had me speechless. I never knew that I was considered to be somebodies hero!!!
  • To all my friends; Jen, Corrin, Shannon, Katie, Jessica, Reta, Barbara, for being there to listen to me when I needed to vent and get things off my chest. You guys kept me sane.
  • To our NICU Nurses - Ramona, Michelle, Kecia, Amanda, Melissa J., Melissa, Carla, and Dana.....I don't know how I can ever repay you for what you have done. I owe so much to you guys! You have done so much for me and my family. You took care of Kennedy as if she were your own daughter. You were by her side when Brian and I could not be. You were there to comfort and care for her in her time of need. You always had her best interests at heart. You would stand up for her when she couldn't stand up for herself. Even though she could not speak for herself you were her voice. When all the doctors said she would not make it you stood by her side and pushed on - YOU NEVER GAVE UP ON HER and for that i am forever indebted to you. If I had to chose nurses to take care of my baby I could not have found more qualified and compassionate people as you guys. I owe my daughters life to you guys! You have not only become our friends but we consider you part of our family. I love you!!!

We have a long road ahead of us but i am stayin' positive. I hope you enjoy the new pics of Kennedy.....

(Above: Kennedy modeling her 1st Halloween outfit)

(Above: Kennedy looks like she does not have a care in the world - this was two days before her release)

(Above: About to walk into the door for the first time with Kennedy)

(Above: The Welcoming Committee)

(Above: Kennedy's first meal at home)

(Above: The first time Kennedy was able to ride in her swing. She loved it!!!!)

(Above: Kennedy in more Halloween attire. Thank you Daryl for my pumpkin hat, it matches my booties)

(Above: Grandma and Kennedy relaxing on the couch)

(Above: Kennedy gettin' some lovin' from her Godmom Jen)

(Above: Some traditions never die. Kennedy getting carried around by Daddy after her first bath at home, and yes she did pee on him again!!)

(Above: Auntie Tracey and cousin Brennen)

(Above: Grandma and Grandpa together with Kennedy)

(Above: I love my outfit Auntie Ash)


Sara L said...

Thank you so much for the updates! I love the new pictures - she's adorable! Being a new mom is hard work - rest when you can and know that it's ok to say "no" sometimes. I'm praying for you and Kennedy!

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Daryl's Dad said...

WE love the pictures. being home finally is as scary as it is nice. I keep having questions for the nurse and there isn't one! By the way, Daryl named her doll Kennedy, her little angel is one of her favorite friends.Thanks, and be well

Daryl's Dad said...

Even though she has never used it,Daryl's g-tube is in for three months, until we prove that she can gain weight. She is having the opposite problem. she eats too much! the more we breastfeed, the more diarrhea she has so we have gone back to the bottle to measure her intake. The g-tube is pretty low maintenance, but intimidating. we are always scared of it being pulled out. it is essentially just a body piercing though, so it isn't so scary

foxykitty50 said...

Congrats! I have found since bringing our Kennedy home that if you schedual all your appointments on two days of the week it makes for an exausting two days, but at least the rest of the week gives you a chance to recharge a little. We will be thinking about you guys!

Katie & Shawn

Derek said...

Derek and I are always here for you all. If you need to get away for a quick meal, we could stay with her. I know that may take a LONG time for you to feel comfortable enough to leave, but know the offer is there. If you need us to come over and cook you another meal and or help out around the house, we'll be there:) We love you guys:)