Pumpkin Patch

Sunday, October 26, 2008

Today was a big day for Kennedy.....She went to her first pumpkin patch and picked a little peanut pumpkin (the pumpkin suited her perfectly). Grandma, Grandpa, Auntie came along with us. I dressed peanut in her little pumpkin butt outfit. She looked adorable - it was a little warmer then expected but overall we had a great time. Kennedy slept the whole time, but I would like to think that she loved being with us out and about.

The only bummer was all the stares we got. I don't think people realize how much they are staring. As everyone knows Kennedy still has her NG Tube in her nose and people really stare!! It is kind of uncomfortable but something we have to get used to I guess. I want to make sure we give Kennedy the most normal life we know how to.

Enjoy the pics.......

(Above: Mommy Daddy and Kennedy at the Pumpkin Patch)

(Above: Kennedy with her favorite Auntie. By the way can you move in?????)

(Above: Kennedy with Grandma and Grandpa)

(Above: Family Picture)

(Above: This was Brian's brilliant idea. He gave our baby to Frankenstein to hold!!! I was freakin' out. But she is one of the only baby's who have their picture with Frankenstein - up close and personal)

(Above: Kennedy airing out. It was really hot out today)

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)

8 Weeks Old - ALREADY!!

Wednesday, October 8, 2008

So today Kennedy is 8 weeks old! I can't believe it - where has the time gone. In one way the time has flown by, however, in other ways it has felt like an eternity. So far there is no diagnosis for Kennedy except Cerebellur Hypoplasia. They are still trying to find what else is wrong with her. We have now moved down to the cell level. Kennedy is now being tested for Mitochondrial Disorders. The only thing that I remember about the mitochondria from college biology is that it converts the energy of food molecules into what powers most cell functions (it is something that is very very important). Kennedy is still jaundice. All the liver tests done last week have come back normal and her liver function tests are improving - they are still very poor, however, they were better then they were. Her blood pressure is still very high. Today her blood pressure mean was 75, the doctors would like it to be in the high 40's low 50's. It is better then it was when she first arrived at Loma Linda, however, it is still very high. For anyone who does not know what all the numbers mean (I don't) just know that Kennedy's blood pressure is higher then my blood pressure. She is currently taking two blood pressure medications and today the doctors increased the frequency. She will now be getting both medications every 8 hours instead of every 12 hours - hopefully that does the trick. The doctors (as usual) don't know what could be causing her blood pressure to be so high. Mitochondrial disorders do not have any affect of blood pressure.

Today was full of lab work and doctor consultations. Kennedy is being very closely watched for fear that she might need another blood transfusion - this will be here sixth (thank god for all you blood donors out there, without you Kennedy would no longer be with us today)! Today my Mom and I went to check up on Kennedy to see how she was doing. She looked pretty good seeing all she had been through the last two days. It was pretty hard for the nurses to get the blood from her for this test. It took them many trys. When all was said and done they had to derive the blood from one of her arteries. Her hands were pretty swollen and bruised but she is a trooper and nothing fazes her anymore. When my Mom and I left today Kennedy still was not showing any signs of needing a blood transfusion. She was not pale and was experiencing no d-saturation's in her blood oxygen level. However, she is really good at compensating for things she is lacking or needs - so that worries me the most.

Brian and I stayed home tonight to catch up on some sleep, however, I can't sleep (as usual). I am just worried that something will happen to Kennedy and it will turn into an emergency situation to get her a blood transfusion pronto. It is so hard to step away and trust that everything will be alright.

I received really good news today. If the doctors are able to get Kennedy's blood pressure under control and Brian and I learn to use Kennedy's NG tube it looks like we might be able to take Kennedy home in two weeks!!! Brian and I are going to be trained this weekend on Kennedy's NG tube (Nasogastric tube) we will learn how to insert the tube and how to check for placement. The NG tube will be used to give Kennedy her milk and 5 medications. For those of you who are not familar with an NG tube here is a little bit of information.....

• The Nasogastric tube is a thin soft tube that is passed through Kennedy's nose, down the back of her throat, through the oesophagus and into the stomach. The NG tube is usually held in place by being gently taped to the side of her face, near her nose.
• Kennedy needs this tube because she is still have trouble eating all her feeds - she is still a week sucker, however, she is improving daily
• The biggest concern is to check for proper placement. If the tube is inproperly placed and milk/medicine is put down the tube it could go into Kennedy's lungs and make her aspirate and in severe cases it could cause pneumonia which could lead to death for her. Placement can be checked by blowing a puff of air into the tube and listening to the stomach with a stethoscope. If you hear the air in the belly the tube is in the right place. As long as the tube is placed in the stomach everything is good to go.

The NG tube is only a temporary feeding aid. If she is not able to nipple all of her feedings in 6 to 8 weeks we will have to take her in to get a gastric feeding tube, or "G-tube", which is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term interal nutrition.

From day one the doctors have been very pessimistic and negative about Kennedy and her chances of survival. Even now, they continue to tell me that she won't make it, how can they say that when they can't even find out what is wrong with her. All I have to say about that is that they don't know my little girl very well!!!! She will make it and her and I will come walking into their doctors office when she is 5 or 6 to say hi! I just want as much time at home with Kennedy that I can get. If god decides to take her away from us early, I want her to be at home with me and Brian as long as she can. I am filled with mixed emotions about taking Kennedy home. I am so anxious! I think the night times will be the worst. She will be home with no monitors, nothing to beep and warn us that something might be wrong. I think Brian and I will have to learn to sleep in shifts - hahahah!!! I really think she will thrive in a home environment. The most important thing to Brian and I is that she is home with us. We can finally get back to a "normal" life. Brian and I will have a lot more on our plates then most parents do but I think we are both very capable and confident in our ability to take care of and support Kennedy. I know it will be stressful but we have each other and really really supportive family and friends.

(Above: "Hello World".....Kennedy is really beginning to focus her eyes alot more.)

(Above: Kennedy sticking her tongue out at the camera)

(Above: Daddy looking really tired - your the best Brian, I don't know if he realizes it but Kennedy is so comforted by him)

(Above: Oh no, we have a drama queen on our hands - Could this be early signs of Ashley 2....if that's the case, watch out world)

(Above: Kennedy knocked out in daddy's arms after her feeding)

(Above: Our beautiful sleeping beauty)

Negative - Again!!

Thursday, October 2, 2008
So Kennedy is doing really good. In just two weeks she has improved so much. I am just ready to get her home already. I love the NICU and all of the nurses, however, I am so sick of spending all of my days and nights there. I just want a "normal" life again. I want to get Kennedy out of the NICU before the RSV season starts. She is very susceptible to getting sick again and I don't want anything to comprise her health.

So yesterday Brian and I spoke with one of the fellows regarding Kennedy's progress. We inquired about the CDG-1a test, but did not think they would have the results back. To our surprise the results were in and they were NEGATIVE!!! So far they have tested for Luekodystrophy and Congenital Disorder of Glycosylation Type 1a and both have come back negative. I asked her if she had any idea what was wrong with Kennedy or where they were going to go next and she had no idea. I know that inborn errors of metabolism/Metabolic Disorders are hard to detect, but geeze....Kennedy has been in the hospital for 7 weeks (since birth) and the only concrete answers we have received are that she has an undeveloped cerebellum (Cerebeller Hypoplasia) and she is hearing impaired (to what extent, we don't know yet). The fellow was not sure what direction the Geneticist and Neurologist were going to head next - I guess only time will tell.

We have had many people suggest to us that Kennedy is probably unable to hear higher tones. This makes so much sense. For the longest time I was telling Brian that I didn't think Kennedy could hear me. She never looks my way when I talk to her and she never turns her head when I walk into her room. However, when Brian talks to her you can see her come alive. She looks at him very inquisitively and loves to hear him sing to her. The doctors have suggested that she might be able to hear Brian's voice better because he has alot of lower tones to his voice, whereas I have much more higher tones to mine. It makes me feel jealous and sad that Kennedy might not be able to hear me talking to her. I am just glad she can hear something though, because this means she will still be able to talk and communicate.

Kennedy is continuing to gain weight and grow. In just two days she has gained over 6 ounces. She now weighs 7 lbs 9 ounces. We will see how long she is on Saturday (length is only done once a week). The nippling is going good as well. We are currently up to 68 cc's every feed (8 times a day). On average Kennedy is nippling 50 % of her feeds. She is able to take the entire bottle if she is up and alert, however, she does not want much to do with it when she is sleeping. I am going to speak with the doctors about training Brian and I on her NG tube or corpack. This is the tube that goes down her nose and into her belly. If we are comfortable with the process they will send her home before she is able to nipple all her feeds 100%. This way we can hopefully take her home sooner then later. She is still fighting her Jaundice. The doctors have increased her liver medication to hopefully allow her liver to flush out the excess billiruben. We have been told that the jaundice could be caused because of her prolonged exposure to the TPN that she was on for nutrition or it could be related to her Metabolic disorder. (Who would have known that a 7 week old baby could be so complicated)

Before every preemie can go home they have to pass a car seat test. This is where the baby sits in his/her car seat for 90 minutes with no d-sats below 85. We brought in Kennedy's car seat last night for Michelle to administer the test last night. Kennedy was doing so good until the last 10 minutes. She d-sated to 72 and was not able to recoup until she was taken out of the car seat. So we are going to try again on Sunday.

I am just ready for my baby to be home. I feel that I am ready for anything that could possibly happen. I know that I will be able to keep my cool in almost any situation. Being in the NICU for more then 50 days has really prepared me for anything. You see and experience alot of things that most parents will never have to go through.

(Above: Kennedy sleeping and my chest. She loves putting her hands under her face while she sleeps. Brian and I can pull them away and she will put them right back)

(Above: Daddy and Kennedy after her bath)

(Above: Kennedy sitting up in her seat that her P.T. gave her to strenghten her back and neck muscles)

(Above: Kennedy deep in thought. She is trying to plan her escape route)

(Above: Grandma and Grandpa together with Kennedy for their first portrait together. We were able to take Kennedy out of Room 3 and to this family room for about 20 minutes on Monday. It was so nice to be able to walk down the hall with her in my arms)

(Above: Kennedy sitting on a couch for the first time in her life)

(Above: Daddy and Kennedy relaxing on her Boppy)

(Above: Kennedy is so full of facial expressions. Even though she can't talk she can still get her message across)

(Above: Kennedy and I kangarooing. This is something that is promoted in the NICU to bond with your baby. Kennedy is in her diaper only and I place Kennedy on my chest with my shirt open. Researchers have found that the close physical contact with the parent can help to stabilize the preterm infant's heartbeat, temperature, and breathing.)

(Above: Kennedy asleep after her 11:00 pm feeding)

(Above: Kennedy sucking her thumb)