Negative

Saturday, September 28, 2008
So we got some good news this week. On Tuesday, Brian and I received a visit from one of the Neurologists at Loma Linda. He told us that Kennedy's Team wanted to re-order the Luekodystrophy tests, however, he said that Kennedy did not have Luekodystrophy and there was no reason for the test to be re-ordered!!!! He said that he and couple colleagues reviewed her MRI and noted that the myelin (the white matter in the brain) was normal. However, he and the geneticist wanted to order a couple more tests because they thought that Kennedy might have a Congenital Disorder of Glycosylation Type 1A (CDG-1A). I do not know to much about this disease, because i don't want to look to much into it until it is confirmed via blood test. The most I know is that this disease affects most body systems especially the nervous system and liver function. I don't think it is terminal like Luekodystrophy, however, I don't think that this is a really good disease to possibly have either. According to the Neurologist if this test comes back negative he said that Kennedy most likely does not have a gentic disorder. The only thing wrong with her would be her underdevloped cerebullum. So we will keep on praying and hope that is all that is wrong with Kennedy.

Kennedy had her hearing test on Monday and she had to be referred because she failed her first test. So the very next day she had a more advanced hearing test which had a wider tone range. The tech told our nurse that she could hear, however, she does show signs of having hearing problems. She also had a vision test. The tech said she could see, however, she did not have great vision either. Kennedy's liver has also become enlarged. We were told that her liver could be blocked and that could be the reason for the bilirubin not being able to escape her body and for her continued yellow coloring. She had an ultrasound on Tuesday, I should get the results today.

On the positive side, Kennedy is doing great on her nippling. She is up to 56 cc's per feeding (which is 4 cc's from 2 ounces). Last night she nippled 47 cc's at her 8:00 pm feeding (the most she has ever taken from the bottle). When I spoke with her nurse this morning she told me that she nippled an entire feeding last night!!! This is such a good sign because this is one of the last big hurdles Kennedy needs to overcome in order to go home. Kennedy also got a big girl crib. This means she is able to regulate her own body temperature and no longer needs the beds with heat lamps. Things are going good. I am just so happy that she is making improvements and she is becoming stronger and stronger everyday. Brian and I were very patient and are so excited to be able to hold our baby whenever we want and for as long as we want. It is such a great reward.

(Above: Kennedy loves keeping her hands up by her face)

(Above: Peanut asleep with her Daddy)

(Above: Kennedy was not to thrilled about this family picture. She was mad that Daddy had to wake her up)

(Above: Daddy feeding Kennedy - she is such a good eater.)

(Above: "Get this tube out of my nose" Kennedy loves to grab and pull on her feeding tube)

(Above: She is so beautiful - she loves pink, can you tell?)

(Above: Kennedy's first bath in her bathtub. She didn't like it at first but then she really seemed to enjoy it once she was in the water for a few)

(Above: Grandpa and Kennedy)

(Above: Kennedy in her big girl crib with her new mobile)

Leaps and Bounds

Sunday, September 21, 2008

Today Kennedy had tons of visitors; Nana, Mimi, Grandma, Jen, Auntie Ashley, & David. She is a busy little girl. We finally got our very first "5 Generation" picture. Plus, Auntie got to hold her Kennedy for the first time - she claims that Kennedy likes to be held by her better then me, but I am not so sure about that!!!

(Above: Nana, Mimi, Grandma, Mommy, and Kennedy - 5 generations)

(Above: Auntie and Kennedy - together at last)

Kennedy is improving daily. She is now on nasal CPAP and all her sats are excellent. From what we are hearing from the nurses and doctors, they will be switching her over to nasal cannula tonight or tomorrow morning. If this is the case, she will be on the lowest level of oxygen support she could be on. Kennedy also got out one of her PICC lines and her arterial line in her foot. I am thinking they will be taking out the other PICC line soon since she is no longer on any intravenous medication. Her blood pressure medicine and anti-seizure medication are all being administered orally. She is also off all her TPN and Lipids. With all these lines gone I am finally able to dress her!!!! She can wear anything as long as it does not go over her head.

Kennedy is now on full feeds. She is currently up to 40 cc's every 3 hours. We are nippling her 15 cc's once a shift. According to the doctor we spoke to tonight, they might increase the amount she is nippling to every feeding. She has really mastered the sucking, breathing, and swallowing. She does not have any d-sats during nippling, which is such a positive sign that she will soon be able to nipple ALL her feedings.

I am so amazed by all her progress. We are still waiting for the tests regarding the Luekodystrophy. I am praying that these tests come back negative. It is so hard to stay level headed about everything. She is doing so well and excelling by leaps and bounds that I don't want to get over excited. I mean she still has a long road ahead of her, but it appears that she is letting nothing get in her way.

(Above: Kennedy and Grandma's first picture together)

(Above: Daddy and his little peanut)

(Above: Kennedy wants these tubes out - here she is trying to pull out her breathing and feeding tubes)

(Above: Taking time to stretch out)

(Above: I don't know what it is about this picture, but I love it!!)

Calling All Angels

Created By Derek Smith for his little Kennedy!!!!

Notice Anything Different????

Wednesday, September 17, 2008

(Above: check out my new look!!)

I HAVE BEEN EXTABATED!!!!! NO MORE BREATHING TUBE DOWN MY THROAT!!!!

So today my mom took me down to the hospital while Brian was at work. We got there at noon once visiting hours began. My mom got to meet one of my primaries today - Keisha. My mom and I were just admiring Kennedy. She is just looking better and better everyday. It is so hard to take your eyes off of her. Keisha broke the news to us that Dr. Abhraim was trying to wean Kennedy off of her ventilator - WHAT! Off her ventilator? Keisha said that if all goes well and Kennedy's gases come back good today they would be extabating Kennedy this afternoon. I think my mouth was at the ground at this point. I did not even know that this was an option or that the doctors were even thinking of extabation at this point. I was full of mixed emotions. I was so excited, nervous, and scared. I wanted that darn tube out of her mouth more then anyone could ever realize, but I didn't want them to take it out to soon and then have to re-intibate her.

However, Dr. Abhraim reminded me that we have to give Kennedy a chance. We need to give her a chance to prove everyone wrong....everyone that kept saying that she was not going to be able to ever get off her vent. I quickly ran out of the room to call Brian and tell him the good news. We were both on cloud nine. My mom and I left around 2:30 so I was able to get home before Brian got off of work. As soon as Brian walked in the door I was rushing him to get in the shower so we could get back to the hospital. I was trying not to get my hopes to high just in case they were unable to perform the extabation that day.

As soon as Brian and I walked in the door we saw our little girl laying there with no breathing tube! It was probably one of the best days I have had since she was born. She looked so good. I swear she had a look of relief on her face. I was so proud of my little peanut. She did it all on her own! Her hard work and determination paid off.

Greg came down that night to see his little niece. He was the first one besides Brian and I to see her new look. Greg brought us dinner and we sat and chatted during shift change. I was so antsy, I just wanted 8:00 to come around. We went back into Kennedy's room and began talking with her nurse Michelle. Before I could even ask, Michelle asked if we wanted to skip the bath and hold her right away - of course we did. It was just like I remembered it. She felt so good in my arms. I had her laying belly to belly. I think that is one of her favorite positions. She laid there and just stared at Brian and me.

I had the biggest smile on my face the entire day. I don't care what the outcome of all this is. All I know is that I have the most special little girl in world. She is not even able to talk and she has already taught me so much. I think she was put here in my life to make her presence heard.

1 down 2 to go

Tuesday, September 16, 2008

Kennedy has been doing so good. The doctors are trying to get a hand on her blood pressure, but other then that, she has been doing great. She has been really active and alert the last two days. She has been keeping her eyes open for hours at a time. She has also become aware of her breathing tube and is trying to pull and push it out. Whenever I see her get her hands on it - I freak out. The nurses have said that babies have extabated themselves. I surely don't want Kennedy to be performing any procedures on herself.

She is also moving around alot more. So much so that her Physical Therapist commented on her range of motion today. She is also getting more fidgety - she wants her mommy and daddy to get her out of bed. Hopefully her blood pressure gets a little more stable so that we are able to hold her again. I have gotten to hold her twice for 20 minutes so next time is Brian's turn (darn, I guess I will share). She is also becoming more expressive. Whereas before, whenever someone would do something to her that she didn't like she would just d-sat, however, now she is starting to frown, raising her eyebrows to give a dirty look, and even crys (no noise comes out but her face gets all red and wrinkled and her mouth is wide open). It is so nice to see her acting more like a "normal" baby!!!

After Brian and I gave Kennedy her bath and feed her dinner, the attendee stopped by to check on her blood pressure. Being me, I had to see if any tests came back and he informed Brian and I that they did get one test back that refuted the chance of her having Adrenoleukodystrophy!!! Wooo Hooo - we are able to rule one of the three test out!!! Brian and I are just staying positive and doing everything we can to comfort and be with our little peanut. She is such a strong willed little girl -I wonder where she got that from (Nana, Mimi, my Mom, and Me - HAHAHAHA)! Hopefully this week we will be able to get a picture of all five strong willed females in my family. For those who didn't know, Kennedy has a great great grandma, a great grandma, and a grandma all on one side. So if all goes well, I will post our first FIVE generation all girls family photo.

(Above: Kennedy sound asleep with her mommy washcloth. My primaries told me to sleep with a washcloth and bring it in so that Kennedy can smell me all day long)

(Above: Kennedy trying to get a grip on her breathing tube - I think she is over that thing down her throat)

(Above: Multi tasking at its finest. Dad is holding Kennedy's hand while posing for a picture. Mom is feeding Kennedy while taking the picture and Kennedy is trying to get one of us to put more breast milk in her syringe. She is up to 12cc's every 3 hours. They are increasing her feedings by 1cc every 6 hours)

(Above: "HI EVERYONE - thanks for praying for me")

The Best Godparents in the Whole World

Sunday, September 14, 2008
Derek and Jen (Kennedy's Godparents) came down to the hospital to see Kennedy. This was the first time they have seen Kennedy since she was transported to Loma Linda. They came down the day she was transported, but was too sick for any visitors. Jen and I went in to see Kennedy - her eyes were wide open. However, I found out that Jen has the magic touch. She started rubbing Kennedy's hand and arm and was able to put Kennedy to sleep. On top of that, Kennedy's blood pressure was at the lowest it had been all day!!! If Kennedy's blood pressure stays elevated I am going to have to get Jen to come down more often and soothe her.

Kennedy is so lucky to have Godparents like you. We know that you will love Kennedy no matter what the outcome is - disability or not. I count my blessings and thank the Lord to have you two in our lives.

We love you!!!

A Sad Departure

Sunday, September 14, 2008
As soon as Kennedy was transferred from Queen of the Valley to Loma Linda Brian's parents left Colorado and headed our way. They have been down for about two weeks. I was dreading the day they were going to leave. It was so nice to have someone at home to talk to or just sit and watch tv with. Plus, my mother-in-law was such a help around the house. Without her there I can't even imagine what shambles my house would be in. She did laundry, cleaning, watched our dog, cooked, shopped etc.....She was a lifesaver!! I am going to miss them. Before their long drive home, they met Brian and I at the hospital to say their goodbye's to Kennedy.

Blessed

Saturday, September 13, 2008
Sorry I have not posted in a couple of days - I have been under the weather (I think the stress finally kicked my butt).

Anyways, Brian and I had Kennedy blessed on Saturday. Before I had Kennedy Brian and I planned on getting her baptised in October, however, we are not sure when she is going to be able to break free :) A close family friend of ours is a pastor at a local church, I had my Aunt call to see if he would be able to make it down to Loma Linda to bless Kennedy. He agreed without hesitation. It made it so much more special to have Kennedy blessed by someone who is close to our family. The words that came from Rod and Lisa's mouth were perfect. Kennedy seem to have a sort of calmness over her as everything was going on - I think she felt a since of peace.

Kennedy's EMG

Thursday, September 11, 2008

Kennedy had her EMG (Electromyography) today which is a test to monitor the function of her nerves and/or muscles. The test is pretty brutal, however, Kennedy handled it like a trooper. She was unable to be sedated for the test, in efforts to obtain the most accurate test results as possible. Her blood pressure was pretty elevated most of the day, but other then that she hung in there. Brian and I were at her room to hang out with her once she was done.

Brian and I both had our minds set on talking to the doctors today. We wanted to get some sort of update - we had not received any new news in about three days. Our nurse paged Dr. Abriham when we arrived. Kennedy had her eyes wide open, even after the rough morning she had.


Dr. Abriham came in and let us know that she had the test results from the EMG - WHAT TEST RESULTS ALREADY!! That already signaled bad news. They never have the final report of any test within a couple of hours unless they say an abnormality and investigated further. The Dr. explained that Kennedy's muscles were normal, however, her peripheral nervous system was abnormal. She told us that everyone thought (herself and the neurology team) Kennedy had Leukodystrophy Disorder. This is a rare group of genetic disorder that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates the nerve. These disorders are progressive, meaning they get worse with time. This disorder encompasses 50 + diseases. The doctors ordered two more labs to be drown and sent out today. The nurse told the doctor that she was not comfortable pulling both labs at once, since they required 5 cc's each. Kennedy is so small and pulling so much blood at once can cause her body to crash (thank god for my primary nurses).


The doctor told us that they were focusing on three disease (in order of likelihood);

Metachromatic Leukodystrophy (MLD)
Globoid Cell Leukodystrophy (Krabbe Disease)
Adrenoleukodystrophy (ALD)

I asked how likely it was that she had one of these - and I quote "if one of these diseases are a match the Head Neurologist has no idea where else to look". Those are always very comforting words. Brian and I left early tonight (10:00) we just couldn't stand by and stare. We were both just to sad and depressed. It was alot of news to take in.

I just hope Kennedy can pull through and prove all these over-accredited doctors wrong. I don't want to accept the fact that we might never get to take her home and show her room that her dad and grandparents spent so much time in making it just perfect, the three of us might never get to have a sleep over in our bed, we might not ever get to just sit and hold her all night long.

Thank you everyone for all your love and support. You guys are our rock. I especially want to thank my husband (I don't know if he will ever read this) but without him I by myside I don't know how I could go on.

(Above: Daddy laying a big smooch on Kennedy's forehead. He was kissing her ouchie)

(Above: "Daddy come back and give me another kiss)

(Above: The first "real" shirt Kennedy ever wore. The nurses had to keep her warm for her EMG)

Kennedy 1st Month

September 10, 2008

I can't believe it....My little girl is already four weeks old. It is so bitter sweet. Kennedy is starting to move around more and open her eyes for about an hour or so on a daily basis. Her edema is beginning to subside - she is staring to look more and more like a little girl instead of plastic doll. She is receiving daily physical therapy and seems to really enjoy it. The doctors are still waiting for tests to come back from the Mayo Clinic in order to find what is plaguing Kennedy. They genetic tests normally take about two weeks (rushed), so we should have some answers by the end of this week. I will be requesting to speak with her head attendee tomorrow to get an update from the horses mouth. It is so hard waiting and waiting to for an answer. By looking at her I just can't imagine that something so serious might be wrong with her - she looks so PERFECT!

Brian and I are staying as involved as they will let us be. We are able to feed Kennedy through her gavage tube, change her diaper, suction out her nose and mouth, give her a sponge bath, help rotate her, rub lotion on her, and perform her evening PT exercises. I swear I can do more, however, I don't think they permit parents to much more. By the time Kennedy is out of this place I am going to know how to work almost every machine in that darn hospital.

Kennedy had to get another IV placed in her head. Now she has an IV on the left side and a PICC line placed on the right side. It looks so barbaric, however, it is the easiest way for them to get an IV placed into her. It is not easy to get an IV placed in her anywhere else. Her veins are pretty much shot. They are either hardened, collapsed, or blown. Whenever they try to place an IV in her hand or foot they have to poke her over and over, however, with her head they are able to get it first go around.

Kennedy is also really beginning to tolerate her "cares" a lot more. Cares are performed every three hours. They consist of turning her, suctioning out her lungs and mouth, performing any lab work that has been ordered etc....It is so nice to finally be able to sit in the room while the nurse performs her cares. Brian and I had a couple of scares when she first arrived at Loma Linda. The nurse was turning Kennedy and she clamped down and stopped breathing - I didn't even know that babies who were on vents could make themselves stop breathing. She began to turn red and her saturation dropped rapidly. Her oxygen saturation should be in the high 80's and 90's and hers were falling in the teens. The nurser began hand bagging her but nothing was working. Kennedy began turning blue and one of the nurses got on the loud speaker and paged all doctors to Room 4. Withing fifteen seconds 20+ doctors rushed in the room. Another nurse escorted us out and told us she would come get us once Kennedy was stable.

When I look back at Kennedy's first month of life it makes me feel so much pain and sorrow. I feel horrible that she has had to endure so much pain and anguish in such a short period of time. A babies first month of life is supposed to be a time when they learn to develop a bond and trust with their mom and dad, however, I feel like I have failed Kennedy in all these aspects. Her days and nights are full of pain and sickness. She is not able to do anything that her brain and nature have programmed her to do.

I sang peanut "happy birthday" today - I know it is corny, but you have to celebrate everything you can when your life is spent in the NICU.

Enjoy the pics!!!

(Above: Kennedy's first picture at 1 month old)

(Above: Kennedy is sucking on her two fingers - something that she has never done. Maybe this is a sign that she will be able to pick up on nippling once her vent is removed)

(Above: Kennedy wanted to show everyone that she can open her eyes)

(Above: Kennedy asleep in her favorite positon on her belly with her blankies that Grandma specially cleaned for her - they smell like heaven, no wonder she was so comfy and her numbers were awesome when we left)

1st Family Picture

Sunday, September 7, 2008

After 9 days of not being able to hold my precious angel, our night nurse Ramona asked me if I wanted to hold peanut. WHAT - I didn't even know I was able to hold her while she was intibated. She told me that as long as she didn't have any d-sats and her blood pressure was within range I would be able to hold her after her bath and weigh in. I was ecstatic!!! It felt like it had been forever.

She did great during her bath and weigh in - so I was in! I was really nervous because I didn't want to cause any pain to her by moving her vent incorrectly. Ramona placed Kennedy in my arms. It was different then any other time I held her because she still had lines and IV's going all over the place. Pretty much the way she was set in my arms was the way I had to hold her. I was able to hold her for about twenty minutes and Ramona took our first family picture.

Something Positive

Saturday, September 6, 2008
Brian and I got to the hospital at noon like we always did. Kennedy got a new roommate. A little boy was moved right next to Kennedy. The mom and dad came in to visit their son. The Mom bent over to pick her son up out of his bed and I could feel was jealousy and anger. I mean I was happy that they were able to hold their baby but I was envious that I could not hold mine. I feel really bad that these feelings crossed my mind, but I just couldn't help them. As I was feeling bad for myself Kennedy decided to open up her eyes for her daddy and I to see.

This was the first time she had opened her eyes since being transferred to Loma Linda (one week earlier). I forgot about how sad I was that I couldn't hold Kennedy and was overjoyed by seeing her beautiful blue eyes open up and stare at Brian and I. The couple next to us probably thought we were crazy. Brian and I were so elated to see out baby. It was the first sign of life she had showed in about a week. It gave Brian and I hope - hope that everything might be okay.

Our day nurse Heather had a suprise for us. She got a really cute pink bow for Kennedy's hair. She looked absolutly beautiful. It is the most dressed up Kennedy's has ever been - HAHAHA!!

Then that night we received even more good news. Kennedy had three nurses who wanted to primary her. A primary nurse is someone who oversees Kennedy whenever they are scheduled to work. This allows someone to really get to know Kennedy. It allows Brian and I to build a relationship with them and allows them to build a relationship with Kennedy. Primary nurses normally are able to tell when something is wrong before test show something is wrong because they know their baby.

Kennedy has one AM Primary - Keisha and two PM Primaries - Ramona and Michelle. We wanted to ask all of them to be Kennedy's primary, however, we didn't want to put them on the spot. It worked out perfectly.

Kennedy's First Hand and Foot Print

Thursday, September 4, 2008
Brian and I finally got to get Kennedy's hand and foot prints - it only took three weeks. But now is better then never. We got her right hand print and right foot print - since those were her only limbs available. I would take whatever I could get.

Our night nurse Michelle also brought out this big bucket of arts supplies and told us that it was time to make Kennedy a name tag for her bed. I made a simple name tag with her name and I put her first hand and foot print on them. It was cute and simple and put a more home touch on her bed.

From Bad to Worse

Friday, September 5, 2008
Just when I thought things couldn't get any worse. Brian and I were patiently waiting the results from Kennedy's MRI/MRS. We were waiting by Kennedy's bed all morning for the doctors to make their rounds. I couldn't wait anymore because I had to go pump. I went out and got my mom to set in just in case the doctors came through as I was gone.

Go figure, I was gone for fifteen minutes and the doctors came by. Dr. Abriham (the fellow) came by with a team of other doctors. They informed Brian that the MRI/MRS didn't look so good. Kennedy had a small/underdeveloped Cerebellum. She gave Brian a printout of a neurological condition called Cerebellar Hypoplasia. However, this was just the condition she had, they still had no idea of what the underlying disorder she had that caused this condition. In an infant or young child, symptoms of a disorder that features cerebellar hypoplasia might include floppy muscle tone, developmental or speech delay, problems with walking and balance, seizures, mental retardation, and involuntary side to side movements of the eyes. In an older child, symptoms might include headache, dizzy spells, clumsiness, and hearing impairment.

When I came back into the room Brian told me the bad news. However, he had no further answers to any of my questions. I think both Brian and my Mom were in such shock that they did not ask the doctor anything. I wanted to know what this meant for Kennedy.....what she going to be able to walk, how severe was this, was she going to pull through this????

I had the nurse page the fellow because I had to talk to her myself. I apologized to her for making her come back, however, I had to have my questions answered. She told Brian and I that it didn't look good. I know she gave us the worst case scenarios, but she told us that they didn't know if Kennedy would ever be able to breath on her own. As she was talking I held back every tear. I made a rule from day one - there is no crying as Kennedy's bed. She does not need to hear or feel any of that. she is going through enough and what she needs from everyone is positivity. Babies can sense these things and I didn't want to stress her out any more then she already was.

After Dr. Abriham left Brian and I just stared at our little peanut. How could anything be wrong with her. She looked so perfect - I mean she did not look like a baby with neurological problems. I know it is not my fault but I can't help but think what could I have done to prevent this. The Neurologist came in about ten minutes later to talk with us. He said that his team was looking at a specific syndorme/disorder, however, he had to go home and do some research on it because there are only four documented cases in the whole world. WHAT - now she possibly has a problem that only four people in the world have. That does not sound too positive.

How could things get soooo bad. About a week ago Brian and I thought we were going to be taking Kennedy home in a couple of weeks and now we are being told that she might not even pull through!!! I had had enough. Brian and I walked out of Kennedy's room broken hearted. Enough was enough. Right when I got into the hallway I broke down. All I kept thinking was all the things I was going to miss out on. I would never be able to take Kennedy on vacation, I would never get to take her to softball practice, I might not even be able to take her home to see her custom room that her family spent so much time on etc....

We broke the news to my parents and all just sat in disbelief. My parents left right after and Brian and I had to get out of the hospital. We went down the street to get a bite to eat. We were gone for 45 minutes before we both wanted to get back and see peanut. We were able to sit and talk to her for about an hour before shift change (6:30 8:00). So we went down to the car to wait for 8:00. As we walked into the parking lot we saw a car with a bumper that was hanging off. Brian and I both looked at each other and said "NO" that couldn't be our car. Yep, it was!!!! Some inconsiderate A**HOLE hit my car and didn't even leave his/her name or number. I looked at Brian and told him that I was just about at my breaking point and I couldn't handle anymore. What was someone doing to me - I mean I can handle a lot but enough is enough.

My Little Case Study

Saturday, August 30, 2008 - Wednesday, September 3, 2008
The first five days at Loma Linda Children's Hospital Kennedy was put through every kind of test humanly possible. The doctors ran so many tests and took so much blood from her that she had to get another blood transfusion (her fourth). I don't think she has any of her original blood in her body. Thank god to all the people that donate blood. Brian and I wanted Kennedy to use out own blood, however, I was not a match and Brian was. Unfortunately, in order to give blood for Kennedy to use it took over a week for processing so Brian was unable to donate to Kennedy either.

Kennedy had all the best doctors on her team. I never knew that some of these doctors even existed. As of now Kennedy has the following doctors working on her case;
Neonatal Pediatrician (baby doctor)
Cardiologist (heart doctor)
Radiologist (I don't know how to describe a radiologist - hahahaha)
Optometrist (eye doctor)
Endocrinologist (hormone doctor)
Nefrologist (kidney doctor)
Geneticist (genetics doctor)
Neurologist (brain doctor)
Respritory Therapist (doctor who controls and monitors her vent)
Physical Therapist

As of right the two possible prognosis' are: a metabolic issue (inborn error of metabolism) or a neurological issue. It is a waiting game. Brian and I are keeping are fingers crossed for the most positive news. We are expecting the worse but praying for the best. I think we can handle anything that life throws our way, we just want to make sure Kennedy can breath and communicate on her own. She is the strongest person I know. I don't think that I would be able to hold on as long as she has. She is a fighter and she is not going to be overlooked.

The Day That Seem to Never End

Saturday, August 30, 2008

Brian got up bright and early to help his brother move a desk. We planned to go to the hospital to see Kennedy once he got back - around 11:00. I woke up at 7:00 am but forced myself to fall back asleep. I had a dream that something bad had happened or was happening to Kennedy. I was then awaken by my home phone....I knew something was wrong. I didn't answer the house phone because I was not ready. When my house phone stopped ringing my cell phone began....I reluctantly picked it up. It was Grace from Queen of the Valley. She explained to me that I needed to come down to the hospital and sign some paperwork for Kennedy to get a blood transfusion. I told her I would get in the shower and be right down. Apparently that was not going to happen. Dr. Goldstein got on the phone and told me that this was critical and I needed to get down to the hospital ASAP. I threw on a hat and some clothes and rushed to the hospital. I didn't even have time to brush my teeth. I was frantically trying to get a hold of Brian, my Mom, anyone.....

I arrived to the hospital and Kennedy looked really sick. I signed the paperwork and Kennedy received two blood transfusions over the next six hours. My Mom, Dad, Brother, Brian, and Mimi all arrived at the hospital around the same time. They all came in to see Kennedy. We met with Dr. Furman who told me that he was going to try and get Kennedy transferred to another hospital. He said he was going to make some calls to some people at Loma Linda and see if he could get Kennedy in TODAY. He came back thirty minutes later and said they would accept her, but, they had to wait for a bed to open up.

We got the news at 12:00 pm that the transport team would arrive at 3:00 pm - she was in! A bed had opened up and there was a spot with her name all over it. However, things started going downhill fast. About an hour and a half before the transport team arrived Kennedy started getting the cold sweats and her body temperature was dropping. She looked very pale and her eyes were beginning to role back into her head. I advised the nurses that something was going wrong. They went and got her some warm blankets - WHAT!!! I told them that this is not something that warm blankets is going to fix. She felt like a dead body.

The transport team could not arrived at a better time. They came in with a transportable incubator and about eight bags full of equipment. They gave Kennedy a quick look over and told me that she looked worse then they were told. The nurse got her blood pressure and looked at the number in shock. She said is that hers. I had to tell her that she wasn't seeing things -her blood pressure had been that high for the last three days. Brian and I were asked to step out and wait for them in the waiting room. We were out there for about 45 minutes but it felt like 45 hours. I kept walking back and forth to the window to see what was going on, but I couldn't see anything. I was talking to the Charge Nurse when Sue, out favorite AM Nurse told me that they had to put an IV in Kennedy's head. She told me they were unable to get it in anywhere else.

The lead transport RN came out to talk with us. She told me things didn't look that good. She gave us a couple papers to sign and said we would go over them once we got to the hospital. Right now she didn't have time. She informed me that she walked in on a situation that was far worse then she was told. She said that if she knew it was this bad they would have came via helicopter instead of via ambulance. She said that Brian and I should head out to Loma Linda since the ambulance was going to be driving as fast as humanly possible. She said she was going to do a blood gas and go from there.

Brian and I were on our way.....I was in shock. How could Kennedy have gone from one extreme to another. I received a call from Dr. Furman. He told me that Kennedy was struggling to breath and the transport team was going to have to re-initbate her. I called Queen of the Valley 15 minutes later to see if the ambulance had left. Dr. Furman got back on the phone and said they were waiting for the helicopter.

We arrived at Loma Linda and went up to the Children's Hospital to check in. As we walked in all you could hear was all the nurses talking about a really sick baby in transit to the hospital. Then I heard our last name and sick baby. Everyone was talking about my sick baby.

I called my parents to see where they were. They had just arrived. Brian and I went out to get them. As we met up with them in front of the hospital we heard this loud noise in the background. It was a helicopter - it was Kennedy's helicopter. The helicopter came flying around the building and towards the roof for landing. It was the most surreal feeling to watch all of this take place. All I kept thinking was how did this all happen? What did I do wrong? Why is this happening to me?

I went up stairs to check with the front desk to see if Kennedy made it off the helicopter. They told me that two teams were waiting for her arrival and as soon as they have her stable the attendee would be out to talk with us. Thirty minutes later Dr. Merritt came out to speak with us. He told the four of us that it didn't look good for Kennedy. She was very sick and her body had gone into shock as was beginning to shut down as the transport team was at Queen of the Valley. She was very critical and they were going to do everything in their power to get her a little more stable.

Dr. Merritt was great....he came out every hour to give us updates. He told us that they were trying to figure out what was wrong with Kennedy, however, they were still unable to figure anything out. He informed us that her PDA had blown back open due to her high blood pressure. He also said they were looking at an Inborn Error of Metabolism as a possible prognosis. In addition, she was several infected. Her white blood cells were through the roof. After about three hours Dr. Merritt came out one last time to tell us that Kennedy was still very critical but they had stabilized her for the time being.

Brian and I were finally able to go in and see out baby girl. She looked horrible. She was very swollen and had blood all over her. Kennedy was intibated again, they put an arterial line in her foot, a femoral central line was stitched into her groin that goes directly to her heart. She also had an IV in her head. Her right arm was covered in blood because they had tried to put other IV's in but were unable to because her veins were no longer working.

Brian and I drove home at 2:00 am. As we walked in the door we got a call from Dr. Merritt. He told us that they were going to be giving Kennedy some anticoagulation medicine because her blood was beginning to clot. The nurse had pulled a large blood clot out of her lung which helped Kennedy breath a lot better. I was home laying in bed thinking that we are back to square one - heck were are worse then square one. All I wanted was my little girl to pull through.

Kennedy's Stay @ Queen of the Valley (8/13/08 - 8/30/08)

Wednesday, August 13, 2008
I was in such disbelief that something was wrong with my little girl. I never anticipated for this to happen. I did not have any inclination that something was going to go wrong. Once I arrived to my home for the next four days (Room 2021) my O.B. came in to see how I was doing. How did he think I was doing. He pulled my baby out FOUR WEEKS to early. He came in to explain to me how he mis measured her head. I could not even look at him. All I wanted to do was jump out of my bed and strangle him.

The first day took forever. All I wanted to do was see my baby. I made Brian run back and forth to the NICU every hour to see how she was doing. He told me that her lungs were underdeveloped and the doctors were giving her serfactin to help things develop more rapidly. I kept telling Brian I just hope we get Kennedy back tomorrow - I was obviously in denial.

I felt so left out. It seemed like the only person who should know what was going on with Kennedy (myself) had no idea. I learned that Kennedy was intibated from a nurse who came into the room and nonchalantly spilled the beans. I broke down in tears - intibated!!!! That meant she was unable to breath on her own. I wanted out of my bed and wanted to see my baby. But I was unable to get out of bed for 12 hours - doctors orders.

Thursday, August 14, 2008

At 5:30 am Brian and I received a visit from my day nurse. She came in to remove my catheter and get me out of bed - could she come in any earlier? Getting out of bed for the first time was not so bad, however, I did feel really light headed. I kept telling myself, "please don't throw up".

It was finally time....At 8:52 am Brian wheeled me to the NICU to see Kennedy!! I was so nervous - what was she going to look like? She was beautiful. Even with all her tubes and wires I thought she was the most precious baby in the entire world.

Satuday, August 16, 2008

My discharge day. I could not believe it - I had to go home without my baby. Instead of being able to walk down the hall when I wanted to see Kennedy, I now had to be a 2o minute car ride away. It was probably the most depressin day I had since having Kennedy. I was wheeled out of my room and down to the car empty handed. We passed two other people being discharged with baby's in tote, however, I was empty handed. Brian and I got in our car and the car seat was empty. We headed to my parents house to get a bite to eat before going back to the hospital to see Kennedy.

Kennedy was given three doses of Serfactin, however, her breathing was not improving. Dr. Furman order an ultrasound and chest x-ray of Kennedy's heart. It was discovered that Kennedy had a PDA (Patent Ductus Arteriosus) which is is a heart problem that occurs soon after birth in some babies. In PDA, there is an abnormal circulation of blood between two of the major arteries near the heart. Before birth, the two major arteries—the aorta and the pulmonary artery—are normally connected by a blood vessel called the ductus arteriosus, which is an essential part of the fetal circulation. After birth, the vessel is supposed to close within a few days as part of the normal changes occurring in the baby's circulation. In some babies, however, the ductus arteriosus remains open (patent). This opening allows blood to flow directly from the aorta into the pulmonary artery, which can put a strain on the heart and increase the blood pressure in the lung arteries. Dr. Furman explained that there is medicine that can be administered in order to close the hole. However, if the medicine does not work a small surgical procedure could be performed in order to close the hole. I was crossing my fingers in hopes the medicine would do the trick and it did. Three days later Kennedy's PDA had closed.

Kennedy also got her PICC line (peripherally inserted central catheter) in. This line would allow the doctors and nurses to administer more medications to Kennedy without having to put so many IV's in her and it decreases the risk for infection. I was all for it. My poor little girl was being pocked left and right.

Tuesday, August 19, 2008

Kennedy was extibated!!!!! No more ventilator and her PDA had closed, it really felt like we were on the road to recovery! The doctor also ordered for feeding to begin. She was now placed a nasal cannula CPAP. Kennedy was placed on 5 cc feedings every 6 hours threw her gavage. It was so nice to see her with less tubes and wires. That night Mommy and Daddy finally got to hold our little girl. She was almost one week old and had never been held. It was the most amazing feeling to finally hold my baby. I was so close to her for nine months and to be unable to hold her for seven days was so unnatural.

She held up pretty well while Brian and I held her. She had a couple of dsats but overall she held up pretty good. I would like to think she was happy to be with her Mom and Dad.
Wednesday, August 20, 2008 - Wednesday, August 27, 2008

Kennedy was improving by leaps and bounds everyday. Kennedy pretty much had company around the clock. My Mom and I visited Kennedy from 9:00 to noon and then Brian and I went once he got off work at 3:00 and stayed to 11:00. Kennedy was making friends with all the nurses. She was the hit of the NICU. They all loved her. We had nurses fighting over who would take care of her each day and night. It was such a great feeling to know that so many people wanted to be involved in Kennedy's recovery.

On Thursday, August 21, 2008 Kennedy got to put on her first shirt. It was so nice to see her with some clothes on. She looked so adorable with this stripped vest that some volunteers make for the NICU. I got to change my first diaper on Saturday, August 23, 2008. It was one of the hardest things to do inside her incubator. There is limited space and cords and IV's everywhere. We received more bad news on Sunday, August 24, 2008. Dr. Furman let us know that Kennedy was Anemic. She had a low red blood cell count. For some reason her body was not able to produce more on her own. He advised us that there was a medication called Epogen they could give her to stimulate her bone marrow to produce more red blood cells. Of course being the person I am, I asked what would happen if this medicine did not work? He informed me that this was very unlikely, however, if the medication did not work Kennedy would need a blood transfusion. Kennedy began Occupational Therapy on Monday, August 25, 2008 to help her with her range of motion and to teach her how to nipple. She was really struggling with nippling. She would tire out really fast on was unable to suck on the bottle for more then a minute or two. On Tuesday, August 26, 2008 the O.T. advised me to put Kennedy up to my breast while she was being fed to see if she would initiate nippling. She didn't - but it was great to have her so close to me. Brian and I also were taught how to give Kennedy a bath that night. It was so cool to be involved in these things since we really are limited on what we can do because of her situation. She loved the bath….she had her eyes wide open most of the time. Wednesday, August 27, 2008 was great. Brian and I hung out until midnight because we had two of our favorite night nurses working – Tess and Mel. We held Kennedy, chatted, and laughed all night long.

Thursday, August 28, 2008
Kennedy's umbilical cord fell off, with a little help from Brian and I. We were holding Kennedythe night before and happened to get it snagged on one of our shirts. When we went to put her back in her incubator it was bleeding and hanging on by a thread. I felt horrible with the thought that I caused pain to my little peanut. My mom and I got to the hospital around 9:30 am to see Kennedy. When we walked in she looked horrible. I asked the nurse what happened to Kennedy. She was very yellow. She looked really bad. I explained to the nurse that she did not look like this ten hours ago. I also was informed that Kennedy's blood pressure has been sky high. She had a blood pressure of an adult man. Her mean was 115 - I looked around the room at the monitors for the other six babies and realized Kennedy's was three times higher then everybody elses. The nurse called the on-call Dr. because Dr. Furman was on vacation. The Dr. ordered some blood work-ups. He also had some genetic tests taken and sent away for analysis. Gentics.....what is that for???? I thought Kennedy was doing better and now they are performing extensive gentic tests on her...............

(above is the last picture of Kennedy at Queen of the Valley - you can see how yellow and moddled she looks)

Friday, August 29, 2008

Brian took Friday off to come to the hospital and hang out with Kennedy and me for the day. She looked even worse today. She was very yellow and moddled (blotchy). I was so confused....what was going on with her. She was doing so well and it seemed like we were going to be taking her home in a couple of weeks. Brian and I talked to the on call Dr. about Kennedy. He explained to me that they were concered that Kennedy might have a genetic nuerological problem. Brian and I then discussed transferring Kennedy to another hospital - one that has a specialized nuerological team.