Friday, August 29, 2008
It's day 110. I sit in a rocking chair holding my daughter. She is awake, but drowsy. She stares up at me and I look down at her. I look at her big blue eyes. They are darker than mine but I think they will stay blue. She is so beautiful- so... perfect. It's almost time to go. Look how big she is now. She used to be so tiny her hand was no bigger than my thumbnail. I tell her how much I love her and how much I am going to miss her tonight. I promise her that I will be back tomorrow and that daddy will come too. I rock her and sing her our lullaby one more time for the day. When it is over I give her one more kiss and stand as gently as possible. I place my baby in her crib careful not to wake her. I can't leave when she is awake- it breaks my heart to see her watch me walk away. I arrange all of her cords and tubes and quietly slide the side rail up. I tell her nurse that I won't be able to come back tonight but I will call to check on her. I say my good byes and I walk to the door. I stop and I turn around for one last look. She is still asleep. I linger for a moment, push back tears and force myself to walk down the hall and out of the NICU. I check my voicemail while I wait for an elevator. One message. It's from Shawn. He wants to know how Kennedy's day was. I call him back while I walk to the car. As I unlock the door I tell him how much she weighed, how well she did eating, and the results from the MRI. We say I love you and hang up. I put the key in the ignition but i hesitate for a minute before I turn it. I can see it. I can sit in that chair with my daughter and I can see the finish line. It's so close I can almost touch it. Almost. It's there, but its just out of my grasp. I head out of the parking lot and towards the freeway. I hope I don't get stuck in Vegas traffic. It's a three day weekend. I'm at a stop light. I start to cry. I am going home empty handed again. There is a car seat behind me, but no baby. I have to go home to an empty room filled with her stuff. An empty crib and a dresser full of clothes and diapers, but no baby to put them on. Green Light. Turn left. Now right. Now left again onto the freeway. Try to stop crying. If I don't stop crying I wont be able to see to drive. Everything is ok. I tell my self not to be so selfish. Some parents don't ever get to take their baby home. One couple didn't even get to hold their baby before he passed away. At least my baby is still alive. She will come home, just not today. Leaving never gets easier. 110 days and its still just as hard as the first. I pray. Please God help me get through just one more day.
Tuesday, August 26, 2008
Just for Fun
Kennedy is doing well today. The flow on her oxygen is down to 1/4 liter. Hopefully she will do well enough to go down some more and not need oxygen when she comes home. Speaking of coming home- the only thing keeping Kennedy at the hospital right now is feeding. They say if she can get up to 2/3 full feedings (60ccs)by bottle they might consider sending her home with the NJ tube for continuous feedings by pump for what she couldn't eat with a bottle. So now that there is talk of going home how about a poll about when she is going to come home? Post a comment with the day you think Kennedy will come home. Once a day is taken it cannot be used again.
Shawn picks September 11th
I pick September 22
Winner gets the satisfaction of being right!
Shawn picks September 11th
I pick September 22
Winner gets the satisfaction of being right!
Sunday, August 24, 2008
Home again and up on a soap box!
So after 70 days in the Ronald McDonald House I came home this past Tuesday. Being down there by myself had gotten to be too stressful. Now I am back at my house and driving daily to be with Kennedy. I am hoping it will give me a few hours of mental down time each day. I loved being so close to her, but at the same time when the hospital is literally 2 minutes away you can never seem to just let your mind relax. I have seen the doctor and I am also trying to find some version of mother's little helper that will take me through this with my sanity still intact.
Yesterday Jenn had some wedding stuff to do in the area so she took me down the hill. While we were having lunch she told me about a person on the baby center board that her sister visits who pretended to have a preemie so that she could collect donations and keep the money. She even stole pictures of other peoples preemies and posted them as her own. I cannot express how disgusted I was to hear this. I wish I could have five minutes alone with that person. No one- and I mean NO ONE other than another micro preemie mom can even begin to imagine what we go through on a daily basis. I have respect for every parent in the NICU and I am sure their time there is the most trying time of their lives, but don't even try to tell me you know how difficult and hard it is to do this because your kid was in the NICU for a week, or two or even a month. They have no idea. 15 weeks- 105 days- that's close to 1/3 of a year. That's how long my child has been away from me. That's how long I have wished every night for her to be home, have prayed that she will be ok for just one more day, that I have spent between 3 and 10 (but most often 6) hours a day in the hospital watching my daughter hooked up to monitors. I don't sleep at night unless I'm medicated. Most of the moms on my mircro preemie board are on some type of anxiety or anti-depression medication, most have had some counseling and and some have been diagnosed with Post-Traumatic Stress Disorder. I don't mind admitting my weaknesses. I think it makes you a stronger person to be able to do so and I don't say it so people can pity me. The last thing I want or need right now is pity. I say it because I want that person to know or anyone else who might even consider doing something like that to know what kind of situation they are taking advantage of. I suppose there have to be all types in the world to make it work, but I have faith that Karma will take care of this person.
Ok Im stepping off my soapbox now.
Yesterday Jenn had some wedding stuff to do in the area so she took me down the hill. While we were having lunch she told me about a person on the baby center board that her sister visits who pretended to have a preemie so that she could collect donations and keep the money. She even stole pictures of other peoples preemies and posted them as her own. I cannot express how disgusted I was to hear this. I wish I could have five minutes alone with that person. No one- and I mean NO ONE other than another micro preemie mom can even begin to imagine what we go through on a daily basis. I have respect for every parent in the NICU and I am sure their time there is the most trying time of their lives, but don't even try to tell me you know how difficult and hard it is to do this because your kid was in the NICU for a week, or two or even a month. They have no idea. 15 weeks- 105 days- that's close to 1/3 of a year. That's how long my child has been away from me. That's how long I have wished every night for her to be home, have prayed that she will be ok for just one more day, that I have spent between 3 and 10 (but most often 6) hours a day in the hospital watching my daughter hooked up to monitors. I don't sleep at night unless I'm medicated. Most of the moms on my mircro preemie board are on some type of anxiety or anti-depression medication, most have had some counseling and and some have been diagnosed with Post-Traumatic Stress Disorder. I don't mind admitting my weaknesses. I think it makes you a stronger person to be able to do so and I don't say it so people can pity me. The last thing I want or need right now is pity. I say it because I want that person to know or anyone else who might even consider doing something like that to know what kind of situation they are taking advantage of. I suppose there have to be all types in the world to make it work, but I have faith that Karma will take care of this person.
Ok Im stepping off my soapbox now.
Friday, August 22, 2008
Thursday, August 21, 2008
How Preemie Moms are Chosen
~*~How Preemie Moms Are Chosen~*~
(Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--
ignorance, cruelty, prejudice--
and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."
(Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--
ignorance, cruelty, prejudice--
and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."
Wednesday, August 20, 2008
Kennedy's 1st Nipple Feeding.
IT TAKES A FEW MINUTES TO LOAD AND PLAY ALL THE WAY THROUGH SO BE PATIENT.
Tuesday, August 19, 2008
Liver Biopsy Results
Yesterday afternoon the Gastro Interologist gave us the results of the liver biopsy. No biliary atresia :0) Instead She has Intraheptic Hypoplasia. So biliary atresia means the big bile duct from the liver to the intestines is blocked or too narrow- what she has means that there are too few small bile ducts inside the liver. Biliary Atresia means surgery right away and a liver transplant sometime during the life time. With the hypoplasia it will be a few years before we will know if she is going to have problems that will require a liver transplant. What we hope will happen is that as she gets older and her liver grows that the bile ducts inside of it will widen and better be able to create and distribute bile. If not it can cause cirrhosis of the liver and will need a transplant somewhere down the line. For now it means she is not able to digest food very well. Also she has the problem with her stomach emptying into her intestines so the plan is to slowly increase her nipple feedings (right now she is at 3cc/3hours) to try and get her to tolerate feedings in her stomach. She is also on the NJ feedings still until she can get up to full feeds by mouth. They are putting her on special easy to digest formula and adding special fats and vitamins to it in hopes that she will be able to absorb the nutrients she needs despite the lack of bile. The ideal situation would be her feeds by mouth would slowly increase till she gets to about 2/3 full feedings by mouth then she could come home with an NJ tube in place to make up for the rest of her feedings as we continue to increase the oral feedings here. She will most likely come home on oxygen as well. If she cant tolerate feedings in her stomach then she may have to have a surgery but we are trying not to think about that until we come to that point.
Wednesday, August 13, 2008
Last two weeks update
Last night was pretty horrible. I was home for the night and went to the big freezer to see if if there was anything good in there and to my complete horror it was not working. My milk has dried up so I can't pump anymore and that freezer had all of my breast milk in it. 140 bottles of breast milk maybe enough for a week for Kennedy. Out of 140 bottles I was able to save 16 and the rest had to be thrown away. I was completely devastated. I was having a hard time dealing with the fact that I could no longer provide Kennedy with breast milk, but the fact that I had 3 months worth of milk in the freezer was helping. At least I was able to give her everything I could and it was a good start, but now all of it is gone. I am sure it is hard for anyone to really get how important it was for me and why loosing it was such a big deal. It was the only thing that I could do that I had planned on doing from the beginning- before Kennedy was even born. It was my last tie to a idea of a normal pregnancy. I fought for every last drop of that milk. My supply was low to start with and I had even taken a prescription to try to increase it, but pumping doesn't have the same effect as a baby at the breast.
This morning I called to check up on Kennedy since I am running a little late getting to the hospital and they said that tomorrow they are going to do a liver biopsy. Hopefully this will give us an answer to her GI problems and why she is not getting better from the jaundice. Here are the last few journal entries to catch you up on what brought us to this point.
8/5/08 Tuesday
I hate the NICU roller coaster. Last Wednesday Kennedy was taken off the vent. She is on an oxygen blender hooked to the wall, but no longer requires a machine to breath for her. Her feeds were also increased and by that Saturday she was up to full feeds in her jejunum. She was taken of TPN and lipids and also had her PICC removed. It made me feel so close to coming home I could almost taste it. Then they started her on bolis feed to test her stomach. Those only lasted two days before they were stopped because of high residuals. Monday they did an ultrasound to look at her stomach and where it empties to see if they could find something wrong. The ultrasound came back normal so today they did a gastric emptying scan. They feed her radio active dye and then use an xray machine that takes movie type images to watch how the dye moves through her system. So for the next 24 hours she is little miss radio active and has to have a special trash can for all her diapers and soiled linens to be properly disposed of. Also I have to wear gloves to change her diaper with seems pretty stupid to me since I am only touching a diaper and she had to eat the stuff. So the scan told us what we already knew- she has extremely slow motility and very bad reflux. Where a normal baby would have 50% of their food left in their stomach after an hour she had 95%. They have no idea why so tomorrow they are going to have the GI team look at her.
8/11/08 Monday
Today Kennedy is 3 months old. She weighs 5lbs 12oz and is 17.5inches long. Because of the results of the gastric scan the GI team came to look at her Friday and do an Gastric endoscopy. They used a little camera with a light attached to look at her esophagus, stomach and duodenum. They didn't see any blockage or webbing that would prevent her from moving food out of her stomach. What they said it looks like is a paralysis of the stomach. The stomach cant contract to push food into the intestines. They are starting her on a med whose side effect is to make people have an extremely upset stomach. They are trying to give her enough to make her stomach cramp up without giving so much that it will cause her to vomit. Also since being on full feeds and off TPN her jaundice has not gotten better so they did a HIDA scan. Its another nuclear med thing, but this time they inject the radio active dye into her and watch how it travels from the liver through the bile ducts. Basically it showed that her liver is either not producing bile or the duct is too narrow to let it pass. The GI team and the surgeons are reviewing her chart and are supposed to let us know where we go from here. In the mean time they are doing a ton of blood work.
8/13/08
So that brings us to today. All I know is they are doing a liver biopsy tomorrow and the rest I will find out when I get down there. For know keep us in your prayers.
This morning I called to check up on Kennedy since I am running a little late getting to the hospital and they said that tomorrow they are going to do a liver biopsy. Hopefully this will give us an answer to her GI problems and why she is not getting better from the jaundice. Here are the last few journal entries to catch you up on what brought us to this point.
8/5/08 Tuesday
I hate the NICU roller coaster. Last Wednesday Kennedy was taken off the vent. She is on an oxygen blender hooked to the wall, but no longer requires a machine to breath for her. Her feeds were also increased and by that Saturday she was up to full feeds in her jejunum. She was taken of TPN and lipids and also had her PICC removed. It made me feel so close to coming home I could almost taste it. Then they started her on bolis feed to test her stomach. Those only lasted two days before they were stopped because of high residuals. Monday they did an ultrasound to look at her stomach and where it empties to see if they could find something wrong. The ultrasound came back normal so today they did a gastric emptying scan. They feed her radio active dye and then use an xray machine that takes movie type images to watch how the dye moves through her system. So for the next 24 hours she is little miss radio active and has to have a special trash can for all her diapers and soiled linens to be properly disposed of. Also I have to wear gloves to change her diaper with seems pretty stupid to me since I am only touching a diaper and she had to eat the stuff. So the scan told us what we already knew- she has extremely slow motility and very bad reflux. Where a normal baby would have 50% of their food left in their stomach after an hour she had 95%. They have no idea why so tomorrow they are going to have the GI team look at her.
8/11/08 Monday
Today Kennedy is 3 months old. She weighs 5lbs 12oz and is 17.5inches long. Because of the results of the gastric scan the GI team came to look at her Friday and do an Gastric endoscopy. They used a little camera with a light attached to look at her esophagus, stomach and duodenum. They didn't see any blockage or webbing that would prevent her from moving food out of her stomach. What they said it looks like is a paralysis of the stomach. The stomach cant contract to push food into the intestines. They are starting her on a med whose side effect is to make people have an extremely upset stomach. They are trying to give her enough to make her stomach cramp up without giving so much that it will cause her to vomit. Also since being on full feeds and off TPN her jaundice has not gotten better so they did a HIDA scan. Its another nuclear med thing, but this time they inject the radio active dye into her and watch how it travels from the liver through the bile ducts. Basically it showed that her liver is either not producing bile or the duct is too narrow to let it pass. The GI team and the surgeons are reviewing her chart and are supposed to let us know where we go from here. In the mean time they are doing a ton of blood work.
8/13/08
So that brings us to today. All I know is they are doing a liver biopsy tomorrow and the rest I will find out when I get down there. For know keep us in your prayers.
Tuesday, August 12, 2008
Saturday, August 9, 2008
COOPER
WELCOME TO THE WORLD COOPER!!!
Today at 2:16pm Cooper Clayton was born to proud partents Mike and Sarah Clayton and big brother and big sister Eric and Jennah. So from one Clayton family to another Congratulations! Kennedy can't wait to meet her new cousin.
Today at 2:16pm Cooper Clayton was born to proud partents Mike and Sarah Clayton and big brother and big sister Eric and Jennah. So from one Clayton family to another Congratulations! Kennedy can't wait to meet her new cousin.
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