Sometimes I'm fine. I talk with my friends or my family; I might even laugh a bit. I went to the pool today with Becca. We had fun until a family came in--a mom, dad, little boy, and baby. I had to leave. Gary and I had dinner with his family tonight. We played cards and had a great time. And then we drove home. In the stillness of the car we watched the lightning race across the sky. I've always loved storms, the majesty and brilliance of the whole event. It hit me that I never got to watch a storm with Carter. Then I was sad. Sad for me because I feel cheated out of those special moments. Sad for him because he was cheated out of life.
I know he did good. I know his story is still spreading, and new people are reading this blog each day. I know that in some way God is getting glory because we have had "such strong faith" through all of this and because Carter made people "appreciate life." And I'm happy for all of that. Don't get me wrong, I do realize that his life was not wasted. But I miss him.
We went to his grave tonight for the first time. It is beautiful. There were several bouquets, a teddy bear, and even a very special note written to him (God bless you A.M.!) I know he's not there. But his body is. That beautiful little body that I tried so hard to memorize. Those sweet little fingers and toes. Those big brown eyes that seemed to contain so much wisdom and understanding. That round little belly that must have hurt him so. I want so badly to hold him once more. I knew the moment I let go of him that Monday night that my arms would forever be empty, but I could not imagine then the sorrow that would accompany the emptiness.
Gary describes it so well when he says that if he allows himself to really think about it, the pain is unbearable. There are times when i just cannot breathe, when the sadness just overcomes me. I feel ripped apart, punched in the gut, stabbed thru the heart.
I'm not mad at God. I'm not. I don't have the energy to be mad. I'm just disappointed. God must have heard the hundreds of prayers asking for healing for my little boy. He had to have known how much we all wanted it. And yet he chose to let him die. I don't understand this from the One who is supposed to listen to and answer prayer. So many try to comfort with the old addages: "Sometimes his answer is 'no'," or "God gave Carter the ultimate healing." But these words mean nothing to me because my arms are empty.
I never in my life have questioned God's existence. Never once have I doubted the place called heaven. I guess I've never really faced any major loss or obstacle, only minor bumps and curves. But this--this is big. I'm trying so hard to keep my faith. I want to believe that God is here, that Carter is in heaven, and that there is a grand design. But what kind of a god takes away a child from two loving parents? What kind of a god forms the inward parts of a baby and makes so many mistakes?
It is so easy to say that Carter is in heaven, that I'll see him again someday, and that God is here to comfort me. I want these things to be true. But I just hurt to bad right now. I asked for a miracle, we all did. And God let us down. I took off my "expect miracles" bracelet Friday after the funeral. It tore me apart to read those words around my wrist. I realized then that I no longer expected a miracle. I'm sorry Linda and Sharon--I just cannot wear it right now.
I know this is not what I'm supposed to write. But it's what is in my heart at this moment. This middle of the night--can't bear to go to bed until I've reached complete exhaustion--dreading walking past his room moment.
I know that my hurts will lessen with time. My wounds will heal. The sadness will slowly turn to joy as I'm able to recall the happy memories more often than the horrible nightmares. It will come with time. I don't need a response. I just need to sort all of this out on my own.

Are You Still There?

Sarah and I just got back from a short weekend trip. We just felt the need to get away from everything and have some time alone. It was a nice getaway and it gave us a chance to kind of catch our breaths. We have times when all we do is talk about Carter and times when we just talk and laugh about other things. It's kind of an emotional roller coaster for both of us right now.
We cannot tell you how much the tremendous outpouring of support has meant to us. Your love and generousity has touched us and motivated us to be more giving. Carter's legacy wil live on in ways we do not even know yet. Our dream is to provide a place for parent's of sick children to stay near KU Med.
Sarah's friend Monica came by tonight and brought us all kinds of good food, including lasagna (my favorite). She and Sarah are sitting on the couch reminiscing about camp days as I am writing this. Monica and her husband Casey has been a big source of support for us. Casey is very talented and made a sketch of Carter for us taken from our favorite picture of him. It is unbelievable. We have it shown below. Casey did not ask us to do this but if you are interested in more of his work, check it out at www.mckinleydesign.blogspot.com . It may be a little disturbing to those of us not so artistically minded. But he is a great person who really loves the Lord.
Love you all. (Check out this picture)

It's 1:26 a.m. on Thursday morning. I should be asleep, but I'm not. And it's not because I have a bottle to fix or a diaper to change. It's because I don't. I close my eyes and all I see is him. I open them up to a home filled with toys he never got to play with, clothes he never got to wear, blankets that never kept him warm. A crib he never slept in.
We had 4 baby showers. We got more stuff than I ever could have imagined. This was the most spoiled and adored little baby even before he was born. Gary and I used to talk about how blessed we were. How God was shining down on us, blessing our baby and our future. How perfect our lives were.
I sit here staring at the screen. I read every entry on the blog and every comment. I watched the story unfold--beginning with anxiety and uncertainty, followed by joy as we saw him progress, and finally the last days when he got sicker. I need to sleep. I want to write, I need to write. I need to release this hurt in a lovely, eloquent story that ends with an inspiring moral. But instead I stare. And I wonder. And I recall every moment leading up to the end. Maybe I just need to tell the story.
We stayed in a room in the hospital Saturday night and Sunday night. It was just down the hall from him. Monday morning at 6:20 the phone rang. It was the NICU, Rhonda our nurse wanted us to come. We did. He had begun losing blood out his ostomy. Bright red blood. We waited for the doctors to come. One by one residents, nurses, and doctors came to his crib. Each one would look at him, then his ostomy bag, and say, "Oh!" The time passed. I stood by his crib. He was weak and sleepy. I pumped. I checked on him again. I sat in the chair. Gary went down to get us breakfast.
At 9:20 I got up to put the milk I'd pumped away. I looked at his monitor and watched as his heartrate went from 120 to 100 to 83 to 66 to 50. I dropped the milk. I called the nurse. Then it was 0. Zero. Nurses rushed to his crib. They sent someone to get the doctors. They pulled the crib away from the wall and surrounded him. I don't know how many, but all those wonderful people who had come to love my son began fighting for his life. One of them said, "Sarah, get Gary!" I ran out to find him just coming in. We watched as two fingers pressed again and again on his little chest. He was intubated. Someone squeezed the bag over and over to make him breathe. Just then an angel appeared.
Dr. Raguveer, who had first cared for Carter when he was born, had been gone to India for a family emergency. They didn't expect him back for a week, yet there he suddenly stood, beside me. He took us out to the waiting room and calmed us. After a few minutes, he went to check, and we followed. Still they worked. Dr. Oluola was there, along with Dr. DeClaro (Carter's girlfriend) and at least half a dozen nurses. They told me to come to him, to talk to him, to tell him it's not his time. I did. I begged him to stay. I told him God had many things for him to do. We had so much to do together.
They got a heartbeat. It rose and rose back to the 120s. He'd come back. But he was bleeding. This time from a tube inserted in his mouth. A constant stream of blood.
I noticed another angel. Faye, who had been his nurse several times and was so good at making him better, was there. In shorts and a t-shirt she was there. I found out later that she'd awoken at 6:30 that morning with a bad feeling about Carter, and so she came to the hospital on a day she was not scheduled to work. God called her to fight for my baby.
All morning and afternoon they fought. They stood over him draining the blood and giving him medicine and more blood. Dr. Schropp came and said there was nothing he could do from a surgery standpoint, only medicine could make the bleeding stop. Dr. Cocjin came and did a scope to find the bleeding. He determined that he could not stop it, and neither could anyone at KUMed. So they arranged for him to be transferred to Children's Mercy.
I could ride in the ambulance, but Gary would have to follow. The team arrived and slowly packed Carter's sick, lifeless body into a new transporter. As I said goodbye to all the nurses, doctors, and even Sheldon, the "door man", I knew it was bad. Dr. Oluola hugged me and said, "He is very critical now. It's in God's hands." I had to run through the hall to keep up with the team wheeling my little boy away. In the elevator, the team leader said to me, "We are going to do what we can, but he is very sick. The ride will be difficult for him."
I sat in the front seat while my baby rode in back and his daddy followed. When we pulled up to Children's Mercy, I jumped out and went around back of the ambulance. They lowered the transporter down, and I looked through the window. Just as I did, his eyes opened up. Wide and looking directly into mine. It was as if we were connected by a cord for a brief second. Then they wheeled him away.
They made me stop at the desk and go through "orientation" while they got him settled in. I waited in the lobby for Gary. We sat, numb and anxious. We were led back to a room by the social worker. Then to another room that was bigger. Finally we begged to see him. "They are still working on him," she told us. "So many around him. It is difficult to see." She went to check. She returned with "We very rarely get a baby from KU. If we do, we know he is very sick. I looked at the faces of the doctors and nurses. I could tell they think he'll die."
We begged some more. They took us to him. The same picture as before. Surrounded by people, medicines, and tubes. Blood draining, sometimes just spilling out his mouth and nose.
The doctor came to talk to us. It is bad, she said. His liver is just too sick. His kidneys are failing now, and there is swelling in his brain. He seems to have had a stroke, and he is unresponsive. If his heart stops again, we don't know we can start it. This is what we kept hearing. We would have to decide to either let them keep him alive artificially or have them stop working so we could hold him in his last minutes.
We had to leave between 7 and 8. All of our family was there. We went back to him at 8. We watched as they worked. At about 8:15 his heartrate began falling. Down into the 60s and the doctor told us now would be a good time to stop if we wanted to hold him. The most difficult decision anyone could ever make is to take away life support from your child. But we knew, so we said ok. Immediately they turned off the monitor and wheeled in rocking chairs. Then it seemed to take forever to disconnect him to the dozens of tubes and wires. Finally they wrapped him in a blanket. They said he'd take some breaths, then eventually stop. He wasn't in pain, they said. Sometimes it only takes a few minutes for the heart to stop, and sometimes it takes longer. It would be quick for him, they thought. Even then I prayed aloud for God to give me my miracle. I wanted it so badly.
The moment was so surreal as they handed me my baby boy. Finally he was free of the wires and tubes. His eyes were closed and his face was relaxed. His little chest rose and fell with each big breath. We held him and rocked him and talked to him. We told him to not be afraid. We'll see him again. We love him and are so happy to have been his mommy and daddy. We are proud of him for being so strong, but he doesn't have to be strong anymore. Now he is free. Now he has peace. His breathing stopped. I sang him our lullaby.
The doctor came in at 8:45. She listened for awhile with her stethoscope to his chest. "He has passed" she said. We stayed with him a bit longer, then walked down the hallway to our family, Carter's body in my arms.
We entered the room filled with our loved ones and stood in the center. I don't know how long. Seconds, minutes, hours?? The saddest room on the earth I'm sure. My mom asked to hold him, and she took him from me. Then Linda, then Cheryl. I remember saying that I loved being a mom. Then they all left the three of us, Mommy, Daddy, and Baby to be together one last time.
The nurse came in. I told Carter that the nice lady, Shannon, was going to take him now. We told him again how much we love him. Gary took him from my arms and handed him to her. I'll never forget watching a stranger take my baby and walk away.
The rest of the night is a blur. I know we talked to the chaplain and the doctor and saw our family again. I know Vic gave us a ride to our car and then we went to the hotel. I know eventually we fell asleep.
Tomorrow is the visitation, then the funeral is Friday. Gary and I are going away for a few days, and then I guess next week life begins again. I guess Gary will go back to work and I'll find a job. They say over time our wounds will heal and our hurt will lessen. They say.
They say God is here. I guess He must be. I cannot see or feel him, but I know he's holding me up. He has to be. I didn't get my miracle. I don't know why. But I did get to be a mom. Only for a little while. And Gary got to be a dad. We were a family.

Visitation and Funeral Directions

First of all, thank you all for your kind comments. Wow, what an outpouring of support Sarah and I are experiencing.
Visitation will be Thursday the 25th from 6-8 PM at Wyatt Park Christian Church in St. Joseph. The funeral is also at Wyatt Park and will be Friday the 26th at 1:00 PM.
From Kansas City, take I-29 north to St. Joseph. Then take 36 highway west to 28th street. Take a right on 28th street to Mitchell Ave. Take a left on Mitchell to 27th street. You will see the church. It has a large arched sanctuary.
Everyone who has been touched by Carter's life is invited.
There is a memorial fund for Carter set up at Nodaway Valley Bank in St. Joseph.

Funeral Arrangements

Carter's funeral will be Friday, May 26 at 1 p.m. at Wyatt Park Christian Church in St. Joseph, Missouri. Visitation and graveside information to come.

Our Hero's Story

He came into our world at 9:43 am March 9th 2006. He left it to be with Jesus at 8:45 pm May 22nd 2006. Words cannot say how we feel. We don't feel much of anything right now. He was the love of our lives. He was truly a gift from God. He was our son. Thank you all so much for what you have done for us. You have lifted us high when we were low. You have demonstrated what the family of God is all about. It's about love. We love you and thank you. This will not be the last entry on Carter's page. His legacy will live on. I promised him that while he was in my arms tonight. His ministry will continue and someday we will be reunited.
Right now plans are pending on the funeral. We will update the blog when we know details.
On behalf of Carter, God bless you and thank you.

Love,
Gary and Sarah

I have no title for this post tonight. This has been the toughest day I have ever lived through. Carter took a turn for the worse this morning and his heart stopped. They got it started again but there were severe complications. It was decided to move him to Children's Mercy Hospital. But even with their expert care they had to remove Carter from life support and he passed away at 8:45 this evening.

I'm sure Gary and Sarah will update this, but I wanted all of you who have been so faithful in your prayers and support to know how much this has meant to all of us. We are truly humbled by the love shown to us and our beloved child. We all got to tell our precious boy good bye without all the tubes and monitors. His sweet face was so peaceful and we know he is at rest after this arduous journey with his Heavenly Father.

God bless you all,
Grammie Ruth

What can I say that will come close to expressing how we feel? We are tired, we are waiting, and we ache to see our baby's smiles. We hold on to the little moments like this morning when he was bright eyed and even had a few "coos" in him.
We had lots of visitors this weekend. I will post pictures soon. Thank you to all of you for just coming to love our little boy and us!
This weekend has brought many questions. I'm sure by now you can sense our frustration and our hurt. Saturday night Carter's fever shot up and his white blood count was 42 (normal 5-17). They discovered an infection in his blood that seemed very scary. His numbers were terrible and he was dehydrated. My heart broke as I stood at his crib and watched him. I cried and cried as I recalled the moment we found out we were expecting, the first time we heard his heartbeat, the first time we saw his face in the sonogram. As I watched my baby squirm and wriggle in discomfort, I thought of the first time I saw him as Gary brought him to my side, then the blur of events after--the nurses and doctors coming to the recovery room to tell us that something wasn't right, the week spent in the hospital and the days of wondering what all these "abnormalities" meant. And of course, the last month--the days after his procedure when things looked so positive up to today when we just don't know what the future holds.
I called my best friend Tiffiny. I talked, she listened. Then, a few minutes later, she called back. This time she talked, I listened. She read a note that I had written her in 1996. It spoke of our friendship during another difficult time in my life--the loss of my Pop-pop. She was there for me when I needed her most.
Then, at about 12:15 a.m., after a short break from the NICU, Gary and I returned to find our little boy being held by the arms that have held me up time and time again--my Dad's (Papa). Carter looked so peaceful in those arms, and later that night we talked for hours, the greatest source of encouragement I could have asked for. I realized that God does answer prayers. So I say "thank you, God" for sending me the love of a friend and a father.
Today, Carter's body is being put to the test. The doctors are trying another method to remove the fluid. They dropped the amount of fluid they are replacing and are also giving him diurretics (sp?) in hopes of purposely dehydrating him. They say it could make his body use the abdominal fluid to compensate. It seems as if it might be working. So far he is not dehydrated, all though he should be, and his drain is putting out less than before. We are hopeful.
It is difficult to see this as a step forward because he still looks so sick. He has blood in his stool now because of esophageal varises (a result of his liver and the portal hypertension). It is hard for him to eat because it must feel like an ulcer. He's on something like 20 meds and replacements.
He will get better. He has to. Carter has to grow up and tell of God's goodness and healing. That's the way this story ends. Right?

Taking its toll

I am not as good as Sarah about describing details but I will make this short today. Carter is just not feeling well and it's beginning to take its toll on mom and dad. So we decided to stay at the hospital tonight. You never want to see your child in pain. It's even harder when there is absolutely nothing you can do to console your child. It seems as if the fluid on his belly combined with a blood infection has made him miserable. He doesn't have his big wide eyes or spontaneous smiles anymore. It is, as Sarah said, as if we are making no progress at all. This is becoming more difficult and Sarah and I need your prayers for Carter as well as ourselves. You all have been more than generous and given us more than we deserve. For that we say, thank you. We are humbled at the love all of you have shown and praise God for it. I know that God has His reasons and remembering Job has helped me with this. God is not unjust. He is Holy and just. He will be glorified in all of this in His time.

Still Waiting...

I wish I had better news. After yesterday, we just hoped today would be better. I arrived at the hospital at 9 a.m. (Gary had to work), and Carter was "resting" in his crib. He lies still for a few minutes, then wakes up--I presume in pain--and lets out a cry. He just didn't look good. His eyes were sunken and dark.
Dr. Schropp came in a few minutes later. He said that Carter's numbers and the way he looked showed that he was beginning to get dehydrated again. So, they decided to replace his fluids at 100% (they'd dropped it to 50% for the past few days). He also said that Carter wasn't absorbing the fluid the way he'd hoped, so he is working on something else, although he's not sure what to do. What they do for adults is to remove the fluid and then re-route it back into the body, or something like that. He says this isn't a good idea for babies because it can cause problems like clotting in the gut. So, we will continue to wait and see.
Carter lost 300 grams yesterday, so he is at 3442 grams...something like 7 1/2 pounds. Poor guy--he's all arms and legs, and belly. His belly is so round that his diaper hardly fastens.
They did an ultrasound on his abdomen today to see how it looks. We don't know the results yet.
He continues to get many meds and supplements. His CO2 level is 12 today, which is very low. His white blood count is 42, which is very very high. They find no infection, so they are unsure of the cause.
It's all just confusing right now. He's sick. He should be getting better. Since he is now on formula, his poop has changed from mustard yellow to dark green--it's yucky, but a good sign! So we must just wait to see what his liver does. We know that the fluid is a sign of a sick liver, and so we pray that it stops coming. Today during the 1 hour of suction, he put out 275 mLs. He felt much better after that, although he had a bit of trouble keeping his food down.
When we came back from dinner, the nurse had deep-suctioned him. He was very congested, and it helped him quite a bit. He woke up for awhile and we had some nice moments:

Click this link for a video of our little guy...warning, he's a bit grumpy, but oh-so-cute!

http://blip.tv/file/get/Sarahheckman-Carter51906519.AVI

10 Weeks Old!

Today Carter is 10 weeks old! We have now spent almost half of his life in the hospital--1 week at the beginning, 2 days for biopsy, and 3 weeks, 4 days this round--34 days in the hospital, 36 days out. Cruddy way to start a life, but just think of the story he'll have to tell when he's older! This is what I keep telling myself, anyways.
I think all the fluid in his belly must really be causing him discomfort and pain. He certainly doesn't sit and scream all day, but that just wouldn't be his style. He's more of a quiet guy. Most of today he was groggy and sort of out of it. He'd lie really still for awhile, eyes mostly closed. Then suddenly let out a cry and squirm a bit. It is the saddest cry you've ever heard--not a loud, angry cry, but more of a startled and sad cry. He ate well today, though, taking nearly all of each feed by mouth. He gets to a point where it just hurts him to take any more.
Carter's fever is better, and his heartrate has gone down a bit, although it is still high. He got his 2 month shots today, which he dealt with "like a champ"--he hardly cried!
I find myself wanting so badly to make it all better--so much so that my heart aches. Then, when I realize I cannot do anything, I sort of disconnect. I'm angry at myself for this response, because I want more than anything to comfort him. Yet, on these days when he feels so bad, I seem to focus less on him and more on his chart or my Su Doku book or magazine. Why is this? Why do I shy away from my motherly duties at the very moment when my little boy needs me the most? I hate seeing him hurting. I hate feeling helpless. I hate waiting. I hate the hospital. I hate hoping and wondering. I hate that so many others have perfectly healthy babies that they get to bring home and enjoy regular daily things with, and I'm stuck in a stark, stuffy room clinging to the hope of one smile a day or a good report from the lab. He just seems to be getting sicker. I know that it is due to the pain from the fluid, and once that gets better, he will, too. But what if it doesn't? What if he just gets worse? He is basically the same weight as when he was born (up to 8 lbs. 4 oz this morning, although that's mostly fluid). Other people's babies are growing and thriving, and mine is struggling. I long to see his big, beautiful brown eyes--bright and clear--taking in the sights and sounds of summer. I need to take him for a walk, wake up in the middle of the night to find him cooing in his bed, and take him to family dinners and church.
But for now I will settle with that which has become the norm. I will go to see him each day, sit and hold him in a borrowed rocker, and turn him over to the care of all those amazing women in the NICU each night.

Stats

Today's numbers are:
White Blood Cells 35.4 (normal 5-17)
Bilirubin 8.4 (normal <1.0)
CO2 14 (normal 20-30)
Albumin 1.4 (normal 3.5-5.0)
Heartrate 170-225 (normal 115-150)
I know it's not wise to look at these numbers all the time and it will make us crazy, but the funny thing is--Carter actually had a good day today.
His bag came off 3 times today, but he handled it very well. Changing it includes taking the old one off (like a bandaid with poop), cleaning the area, and putting a new one on.
His drain did well, leaking less and less. His belly was a little rounded but not too tight. He didn't seem to be in much pain.
He took 3 bottles completely! He ate well, thanks to Daddy!
Carter was awake from 11 a.m. to nearly 8 p.m. He wasn't fussy, wasn't cranky. He was happy. Cooing and smiling and sticking out his tongue (his new favorite expression). He even smiled at his new friend Charlene! He also has learned to let Daddy know when he is ready for more food--Daddy would take the bottle out of his mouth, and a few seconds later, Carter would shout out "Aahh!"
So his numbers are off. His liver function numbers are high, as usual. There are other things of concern, namely his high heartrate, but he seemed to feel good. He was happy as can be until just before 8, when he finally exhausted himself and drifted off to a deep sleep (the nurse changed his diaper and dressings and he didn't wake up!).
We are off to bed--we'll hopefully know more about what is causing Carter's high WBC, temperature, and heartrate.

I am happy to say that Carter's day ended with smiles and sweet faces and fun with Mommy and Daddy. It was a long day with several ups and downs...here are the highlights:
We had several visitors. Linda D. came to visit and brought us YUMMY cinnamon rolls, which Gary was reluctant to share. Moriah and Trisha came to visit, too. Thank you, Moriah, for my Mother's Day gift...I love it!! Moriah has shown us so much kindness and thoughtfulness. Moriah--I want to be like you when I grow up :)
Carter looked very pale and listless this morning when I walked in. He just wasn't himself all day. Groggy and lethargic, not wanting to eat. His belly was tight, and it must have been causing him some pain and putting pressure on his stomach.
His drain did well today, although it put out a fair amount, they believe they are on the right track with their plan. They don't want it to cause him too much discomfort, which is good because neither do we. The doctors really care about him.
When we came in after dinner, Carter was asleep in his swing. We woke him up for his bath and diaper/dressing change. He does not enjoy bath time, but the rest of it is OK.
There are triglycerides in the abdominal fluid. Dr. Cocjin of GI says he thinks his lymphatic system must have some damage to it, causing it to leak these triglycerides, which come from fatty chains in the breastmilk. So, to try to let it heal itself, we have to switch to a formula. They are waiting for a special kind to arrive on Thursday, but until then, he gets this terrible smelly stuff that is supposed to digest easily. I'm pretty sad about it, because now not only do I not get to nurse him, I also just have to pump and store it for who knows how long. They say perhaps months. Agh.
After the bath it was time for Carter to eat. I told him that my feelings would be hurt if he ate the nasty smelly stuff better than mommy's milk. Well, he ate it better, although he had to have about 1 ounce put thru his tube. Then, the little stinker just came to life. He was smiley and happy and alert. Until, that is, Mommy started to sing to him. By the beginning of the third song, Carter was out like a light. Daddy says it's because he was trying to hide from the terrible noise, but I know it's because my voice is sooo soothing!
Oh, I forgot to mention this earlier, but happy birthday Uncle Dustin!! It was today (Tuesday the 16th) and I hope it was great!!

Well, Monday marked three weeks in the NICU. We had talked about moving down to the PICU (for children up to 18 years), but I'm sure you've heard about the controversy at KUMed, right? Well, the doctor said we should stay away from there until all of that cleared up, and we thought that was a good idea.
Carter did so well with 8 hours off suction, 4 hours on over the past few days that Dr. Schropp upped it to 11 hours off suction, 1 hour on! For most of the day, Carter was in a great mood and didn't seem to be in pain. His belly was soft, and he wasn't leaking too much from his drain. By about 10 p.m., he was getting uncomfortable and fussy. His belly was getting puffier, but all in all, he did very well with the extended time. His body seemed to be absorbing the fluid.
His numbers are still not right, but it seems to be something we'll have to watch over time. His bilirubin is up a bit, and that's discouraging, especially since he looked yellow again last night. However, we are BELIEVING that his Kasai is going to keep working and his liver is going to heal.
Sarah is heading to the hospital now, and Gary will come around 2. We are so very fortunate to be able to spend so much time there. I see many moms who can only be there for a short time in the evenings. While it's easy to judge and say, "Why aren't those moms with their babies all the time?" I know that many of them have other children, jobs, or simply no way to get back and forth. God is showing me daily how great his provision for me really is.

What a wonderful Mother's Day! We had several visitors--Papa (Canaday), Aunt Becca, Grammie, and Grandpa and Grandma Linda all came today! I got a super-sweet Chicken Soup book for Moms of Sons, plus two cards--one from Gary and one from Carter (he even signed his own name!!) Gary took me out for a nice dinner while Grammie watched Carter.
To top it all off, Carter had an excellent day! He was cheery and relaxed all day. He took most of his bottles very well, including his 6 and 9 p.m. feeds completely! He had no suction on his abdominal drain for 8 hours, and everyone thought he'd be cranky because of the pressure in his belly, but--his belly stayed soft all day and he was happy! Then, when they put the suction back on, it didn't drain nearly as much as in days past! So, this is a very good thing.
His numbers are still way off. His pediatrician made us some charts. Although his bilirubin number has gone way down since his surgery, his liver function numbers have climbed significantly, beginning at the time of his surgery. We are believing that these numbers will go down as the fluid level decreases, as a sign his liver is healing, so keep up those prayers!
Here are some pictures of our weekend visitors:

Carter with Aunt Jeanne

...and Cousin Jill

...and Papa

...and Grandpa

Make Me A Blessing

I got to give someone a blessing tonight. It is the most wonderful feeling in the world when you can do just something small for someone else. I was staying in one of two parent rooms, and when I went to check on Carter before I went to bed (at about 11 p.m.), I ran into Kizzy, the mom I'd mentioned before that I got to pray for. We visited for a few minutes, and when I asked what she was doing there so late, she said that she just needed to be close to Tymon, her son, but that both parent rooms were full so she was going to sleep in the waiting room. Well, I didn't really need to stay, Carter was doing fine. So, I got to give her my room, and I came home.
God is stretching me in ways I never knew I needed to grow. I am so grateful that even in these difficult circumstances, He is molding me and letting me see His goodness. We are His hands and feet, and it's amazing to see the size of the footprint left from just the smallest of steps. God bless Kizzy and Tymon tonight!

The Saturday Morning Post

Last night was such a blessing--as Grammie told! We played on the playground and I (Sarah) even went down the slide! A much needed break with my amazing family.
We spoke with Dr. Schropp today, and we are going to try to get Carter moved to the pediatric floor or the P-ICU next week. We are happy about this because he will have his own room and we can stay in with him, but we sure will miss the nurses and doctors in the NICU. Today, for example, Carter's nurse is Leesa, a very sweet woman with a sweet southern accent. I am able to be at home for awhile because I know he is getting loved on and cared for. Dr. Clark, who was the attending in April came by to chat and check in on Carter. One thing we really appreciate is that everyone takes time to visit--they really care. Dr. Oluola came back to the hospital at midnight to check on Carter the other night...he actually left his home just to come make sure he was okay--that's dedication!
Again, we are experiencing some setbacks. Carter's drain is off suction for 8 hours at a time, then on for 4. This is to help the body start to reabsorb some of the fluid. Hopefully this will work, and he doesn't seem to be in as much discomfort during the no-suction time as we thought he'd be, so this is good. But while his bilirubin had reached an all-time low yesterday (direct was 3.4, which is equal to when he was 1 week old), it seems to have climbed up again to 4.8 (it is supposed to be below 1). Also, many of his liver function numbers are up. They have been relatively high, but today a few of them are really really high. One, for example, is supposed to be 20-100, and it was over 700. So, they are unsure what this means.
They didn't get an IV yesterday, his veins are very weak. But, they found a way to give him blood through his central IV line, so that was good.
Carter is still getting lots of meds and supplements, and this will continue for awhile. The doctors say his liver is still very sick, and as Gary said in his blog, "only time will tell". I am holding onto this Word:
Psalm 40
1 I waited patiently for the LORD;
he turned to me and heard my cry.
2 He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
3 He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.
4 Blessed is the man
who makes the LORD his trust,
who does not look to the proud,
to those who turn aside to false gods.
5 Many, O LORD my God,
are the wonders you have done.
The things you planned for us
no one can recount to you;
were I to speak and tell of them,
they would be too many to declare.
Today Carter's Aunt Emily graduates from MWSU--Congrats, Emily!!! We will have visitors later today--Gary's Aunt Jeanne and family are coming!
Happy Mother's Day to all moms out there--I'm spending my first in the hospital...not exactly as I've always imagined, but I can't complain. There is so much to be thankful for--I have my family, and that's all I need.

Moments of Joy

Gary and Sarah have been absolutely fantastic about their honesty and raw emotions through all of this. But I (Grammie Ruth) want to give you a bit of a different slant.I'm blessed to be able to spend a lot of time with them and Carter at the hospital so I've witnessed first hand their strength and deep faith. I've also observed them fight back tears and occcasionally let them flow. But even with all they've been through they've found compassion for others and moments of joy. This evening was one of those moments. I was visiting with my precious grandson and daughter while waiting for Gary to get off work. Faith and Morgan (Sarah's sister and niece) came by for a visit. When Gary came to the hospital (armed with beautiful flowers for Mother's Day from Carter) we went out to get a bite to eat. Of course no one could make a decision so Morgan decided on McDonald's. We discovered it wasn't because of the food but because of the song (Old McDonald Had A Farm, E I E I O). Because McDonald's playground was closed we had to find a park to expend a bit of that energy a two year old can develope. We found one down the street, adjacent to the Westwood Christian Church. It was a wonderful, peaceful place - just perfect for renewing our spirits. And as only a child can show the way, we laughed and played and had a wonderful time. I think this picture taken this evening says more than I can - that God's love is evident if we just let him show it.

Ever have one of THESE days?

We had a meeting this morning with the 3 main doctors that are caring for Carter. It gave Sarah and I a chance to ask questions and have all 3 doctors in the room at one time. Basically the answer to all of our questions was "It's going to take time." Dr. Schropp said he thought, before the surgery, that the Kasai procedure would not work. He was he was very surprised to see how well it is working. (Answered prayer) Not only that, he also said that the drain in his stomach is working much better that he thought. (Answered prayer) The main concern right now is how much fluid is draining out. He decided to start letting the fluid not be suctioned out for 8 hours and then suction for 4 hours to see if Carter's body will begin absorbing the fluid more. Dr. Schropp said it could take 6 months. Whoa! Hold on. Now I'm O.K. with a couple of weeks, maybe a month, but 6? He also said it could be a matter of days. Once again, "It's going to take time." They also want to give Carter a blood transfusion because of all the blood they have been taking for tests. This would require an IV. When I talked to Sarah last they had tried twice but not succeeded. They need a separate IV from the one that was surgically placed in his leg. Please pray for this.
I went to get the oil changed in the car before going to work this morning. I met a lady who worked at the desk. She mentioned that she knew who owned the back seat of my car. (Referring to the car seat and muliple baby items.) I told her about Carter being in the hospital. Turns out her son had the same procedure done as Carter, which is rare. Now I believe in some coincidences but I also believe in a God who orchestrates our lives perfectly. She said it has been 2 years and he is doing great. That's encouraging. Then I won a fifty dollar gift card at work today. That's encouraging. Then a gentlemen at work gave Sarah and I a very nice card letting us know his family is thinking of us. That's encouraging. Inside the card was a 100 dollar bill. Now folks, that's just plain God! Ever have one of these days? Thank you for your continued prayers.
In Christ's love.
Gary, Sarah, and Carter

A Sweet End to A Difficult Day

So today, after much convincing and nudging from the nurses and my husband, I left my little boy and went home for some much needed rest. I took a long nap, did a little housework, and even went to Target. I called to check on Carter, and the nurse informed me that although he'd been in good spirits, he was not eating and was lathargic. When Gary got home from work, we went back to the hospital. Sure enough, our sweet little boy was gray in color, and his fontanel was sunken in. His energy was low, and he was sleepy. His bloodwork came back up a bit from yesterday, but everything else pointed toward dehydration.
That was at 5 p.m., and we just loved on him and played. By 6, he was wide awake, smiling occasionally, and ready to eat! I guess he just needed some time with Mommy and Daddy. He had a good evening, eating both his 6 and 9 bottles completely! When we left at 10 p.m., he was resting peacefully in his crib.
Carter is still getting albumin, sodium bi-carb, a steroid, gas medicine, and several antibiotics. Add to that list a new saline with sucrose in it due to his low blood sugar, and we are keeping his nurses quite busy! He is still putting out a very large amount from his abdominal drain, with no end in sight.
Gary gave Carter his bottle tonight. It is the sweetest image in all the world to see the man you love holding and caring for your child. He is an amazing daddy, and I am so truly blessed. I know that Carter is going to grow up to be a kind, caring man just like his dad.
Tomorrow Gary and I meet with all the doctors and the family coordinator to make a plan. We are going to ask about seeking another opinion, as the doctors don't seem to know what to do. We have had the very best care at KUMed, and we are sad to think of going someplace else, but perhaps he needs more specialized care. Pray that we and the doctors will make the right decision about what to do.
We have so many questions, so much frustration. Right now we are in the middle of the greatest storm of our lives. It's hard to see the break in the clouds, and even harder to imagine a rainbow. But we have hope in God's grace. I just keep going back to the belief that I have the arms of God around my family. Here is a song by Casting Crowns called Praise You In This Storm (sometimes the words of others say it far better than I):
I was sure by now
God you would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
that it's still raining
as the thunder rolls
I barely hear your whisper through the rain,
I'm with you
and as your mercy falls
I raise my hands and praise
the God who gives and takes away.
Chorus:
And i'll praise you in this storm
and i will lift my hands
that you are who you are
no matter where I am
and every tear I've cried
you hold in your hand
you never left my side
and though my heart is torn
I will praise you in this storm
I remember when I stumbled in the wind
you heard my cry you raised me up again
my strength is almost gone how can I carry on
if I can't find youand as the thunder rolls
I barely hear you whisper through the rain
I'm with youand as your mercy falls
I raise my hands and praise
the God who gives and takes away
Chorus
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth

New Pictures

Yesterday--Wednesday--was a good day. Carter spent most of the day in a good mood, often smiling and playing. In the evening, Grandpa and Grandma Linda came to visit, and after a good meal for Mommy and Daddy, they got to spend some time with Carter.
Then it was time for the bath and colostomy bag change. This might not make any sense, but I'll explain it as best I can. We've started putting the bag on using this skin glue, followed by a duoderm patch, which is supposed to be easier on the skin. The bag sticks to the top of the patch. The hope is that the bag will come loose, not the duoderm, but so far, his poop just seems to leak between the duoderm and his skin. We discovered the root of the problem last night: his mucous fistula (a second, smaller opening next to his stoma) was herniating. Part of his insides--I would guess intestine--was protruding through the hole. When he cries, the whole left side of his abdomen pushes out, plus his umbilical hernia puffs up, too. So, the doctor looked at it and called Dr. Schropp, who said he'd have a surgery resident come look. Not thinking, we went ahead and attached the bag, via skin glue, duoderm, and then the bag. It was a great bag job! A few minutes later, the surgery guy shows up and has to peel it off--agh! All of this after the hated and loathed bath. They say that it is common and OK for it to herniate that way, but geez!
Finally, we (Mom and Carter) got to rock and snuggle! Ah, bliss!
He seems to be confused about eating. Part of the time, he takes his whole bottle and doesn't complain. Other times, he swallows a little and lets out a cry like he's in pain. Yet other times he takes about half and no more. So, we are working on that.
Carter is still on antibiotic (3 different ones), lots of saline to make up for fluid lost, and steroids. There are several other meds he gets depending on his electrolyes and counts. He gets several heel sticks a day for various tests, and he really doesn't like those.
Doctors are still trying to figure out what to do about the drain. By 8 a.m. this morning, he'd already drained a Liter of fluid! Where on earth is this coming from? No one knows.
OK, OK, enough blabbering! The pictures already!! (that's what you are waiting for, right?)

God is Good!

O.K. so all this talk about how people are praying for us has finally hit me. I (Gary) began leaking from the eyeballs today as I read all of the comments you all have left. A lot of you say that you read this everyday and that it is a witness and testimony to the love of God. What you all may not know is that Sarah and I cannot wait to read the comments left at the end of each day. Those are a source of strength and an unmistakeable mark of the presence of God in the midst of all this. You have loved us, moved us, strengthened us, given us peace, and created a bond of support for Sarah and I. Carter will get better. I know he will. And it's because of the unwavering faith and committment of God's people. You are showing God's goodness. Thank you so much! God is so good!
Now, for news on Carter. When I came into the NICU this morning at 8 am, he was sound asleep in the swing. So we let him sleep and at 9 o'clock we got him up to change his diaper and feed him. To our surprise he was full of smiles and giggles. I cannot tell you how much joy that gave me to see him look into my eyes and smile.
Dr. Schropp came in and said he wanted to try to cut off suction from the drainage tube to his abdomen for 4 hours and then give suction for 4 hours off and on to see how he would do. He hopes that Carter's body will begin to absorb some of the fluid and reduce drainage. Carter is now taking all of his milk by bottle and has not needed the feeding tube for a few feedings.
At noon during his feeding, he kept stopping and smiling at me. It wasn't one of those half awake smiles either. It was a true and happy smile. We'll take more of these days please.
(Also read "Little Angels"...and new pictures of Carter to come soon.)

Little Angels

We have never seen blessings like this. We are truly amazed at how far Carter's story has traveled. "Thank you" does not even begin to say how we feel, how grateful we are for your prayers and encouragement. You have prayed, you have given us great support, and you have passed along our family's story. God is here, and we can feel Him. Thank you!
Carter had a better day Tuesday, no doubt due to all the prayers from you. He looked so much better, and although his counts are still not right and he is draining such a large amount of fluid, he seemed to feel good most of the day. We'll see what today brings, but we learn to treasure each sweet moment.
Our pod (area of the NICU) had 4 babies at the start of the week. Yesterday 2 went home. One was the son of a hispanic couple, and I regret that we were unable to communicate with them. Seemed to be a kind, loving family. The other, Orion, is Carter's little friend. Although they were never formally introduced, Carter seemed to have a genuine concern for him. Always looking when there was commotion near Orion's crib, cried when he heard Orion crying. I think they'll be friends. Orion's mom, Jen, and I have become friends. She has been such a source of strength for me, just having another mom to talk to. I believe she has the spiritual gift of encouragement. God gives us all special gifts, ways to share his love, whether we know it or not. I am very grateful for our friendship, Jen.
The other baby that remains with Carter is also very special. When he leaves the NICU, he will go to a foster home. His mother leaves today (Wednesday) for 6 weeks of rehab. She loves her son so much, and although it will be rough, she knows she needs to fix herself so she can be a good mom to her son. Pray for this family. The mom will need your prayers for strength in the weeks ahead.
Also, check out www.hughs-family.blogspot.com for another touching story.
One more request. There is another woman named Sarah who recently gave birth to a son. His heart and lungs were unable to form fully. At around 2 weeks old, his little body gave up, and he passed away. I cannot imagine the pain his parents are going through right now. Please pray for them.
God bless each person who reads this. You are a testimony of God's great love!

Gary and I took two cars to the hospital this morning because he had to go to work tonight. While we were on the road, he called me to tell me to turn to KLOVE. When I did, this is the song I heard: (I'll warn you, you'll cry)
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understnad
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
(Chorus)
Can You hear me?
Can You see him?
Please don't leave him
He's my son
It's by Mark Schultz, and we had just talked about the song the night before. It speaks the words our hearts can only cry out to God. This is a pain unimaginable.
We walked into the NICU this morning to see our little boy. His nurse, Faye, was holding him, trying to get him to eat. He hadn't eaten all night and was quite weak. Dehydration had set in again, and his eyes were sunken into his gray face. She told me her job today was to make him well. So, throughout the day, he got an NG tube down his nose for feedings and more meds than I could count. Finally, at 6 p.m. Carter took 40 mL, so he only had to take 30 by tube. He'd gotten some strength back, and his color looked much better.
The doctors are trying everything. He has an infection, probably colongitis, so he is on antibiotic. His fluid output is still huge, but it was beginning to get clearer. His electrolytes are still out of whack, and his CO2 level is 16 (they say it should be 25-30). But all of the doctors and nurses are truly amazing. They care so much, as is evident by Kim's comment (thanks, Kim!).
I've said this to my closest family, and I say it now because I feel the need to scream it for the world to hear:
Why my baby? People say he will be a testimony, but why him? I want him to be well, to be a normal, 2 month old baby. I want him to be home.
When we got the tour of the hospital baby area, the woman took us by the door to the NICU. It's a rather inconspicuous door, and I never would have guessed that so much went on inside. I remember thinking that it was nice to have a NICU there, for those babies. I remember thinking how hard it must be for those moms. Good thing we'd never need it.
These things happen to other people. People you hear about from some distant connection. How sad, you think. And then you go on about your life. You dream about your child and you worry about his first day of school. You are sure it will break your heart when he falls off his bike, loses his first tooth, goes to the prom.
And then you hear the news. You hold his hand and wonder what blow will come next. God, we can't take any more blows. He's been through enough. Let him be OK. Let me take him home, rock him to sleep, play with his toys, go for walks. I need him to be alright.

Count It All Joy

Why is it that every day brings some new obstacle? (I will warn you, this post will be long.) Today brought dehydration, electrolyte imbalance, sodium defficiency, lots of blood draws, herniating of the stoma, weight loss, bilirubin rise, abdominal fluid output rise, white blood cell count rise, and lack of appetite.
--Carter's bilirubin is up--5.8 two days ago up to 6.8 today. Not enough to get really worked up about, but still, an increase. It had been going down for the past two weeks, so this is a bit of a disappointment.
--His abdominal fluid is still draining quite a lot. About 30 mL or 1 ounce per hour. Considering he eats approximately 2-3 ounces every 3 hours, this is not a good thing. They were replacing 1/2 his fluid loss with saline by IV, but the doctor switched it today to full replacement. Hopefully this will help ward off his dehydration.
--His counts are out of whack because of all the fluid loss. Sodium level is low, so now he gets special medicine for that. Electrolytes are messed up, so he's getting some replacement nutrients for that. Because of all of this, he gets his heal stuck for blood draws every few hours, usually just as he's finally beginning to rest.
--Dr. Oluola said he was with Carter for a long time during the night (Saturday night) fixing his stoma (the part of the intestine that sticks out of his belly for his colostomy). It had begun herniating, or pushing out, and he tried to get it to go back in. Therefore, the good Dr. was still in the same clothes from Saturday. Thank you Dr. Oluola!
--His ostomy bag kept coming off, so we spent the first hour or so of our day fixing the situation. They finally put skin glue on his skin, then a layer of duoderm adhesive, then his bag. Hopefully this will help, as his skin is very irritated.
--Carter's weight as of 12 a.m. Sunday was 7 lb. 12 oz. This is over a pound less than 2 weeks ago when he came into the hospital. Our little boy's arms and legs are so skinny, and his little belly protrudes around his stoma.
--The normal white blood cell count should be between 5,000-17,000. Carter's for the past 2 days is over 35,000. We are unsure if an infection is causing this, or if it might be the steroid medicine he's on. More tests and uncertainties. So he's on an antibiotic.
--The fluid draining from his abdomen was a clear yellow until a day or two ago, when it suddenly became milky. The doctor doesn't know if it is infection or if there is a leak in the surgery areas somewhere, causing the breastmilk to leak into the abdomen. Neither of these is a good thing, of course.
--Finally, Carter is quite excited about breastfeeding, but soon after he begins to eat, he gets very sleepy. We are afraid he will have to go back to bottle feeding so we can keep track of the amount he's getting.
Our baby just seems to be getting sicker. It is very difficult to stay positive after today. We know that he is not close to coming home, especially because of the weight loss and fluid troubles. The doctor is "very concerned" and so are we. Yet we know that God is in control. We have to keep trusting Him, and we take joy in the sweet little smiles from our son. He really is the most precious child ever. Seriously. I'm not kidding. How could you not love this face?

James 1:2 says, "Count it all joy, my friend, when you encounter various trials." This is so hard to do, and we know this is the biggest trial of our lives, but God is here. He's in the NICU, guiding the doctors and nurses, he's sitting by Carter's crib, holding both his little body and our hands, and he's with each of you as you go about your days. So, have a good Monday.

P.S. We had many visitors over the weekend. Here are some shots of the Grandpas (and Grandma Linda) with Carter:

Thank you to everyone for the cards and gifts. One gift, from an angel named Wilma, now hangs over Carter's crib:

May God Bless You

Well, today was filled with some good and bad news for our little boy. I'll start off with the bad and end on a good note. Carter's white blood cell count was higher than it should have been with the latest blood test. We asked the nurse and doctor why that was and they said it was a probably an infection. They are not sure from what, but they are taking precautions by giving him an antibiotic. The doctor actually said that the numbers didn't add up so he wanted to have his blood tested again. When the results came back, the count was still high. We also had a hard time keeping a colostomy bag on today. We changed it at least twice today which did not make him a happy baby. So Carter was pretty fussy all day today which made it frustrating for mom and dad who tried what they could to comfort him. The good news is the doctor said he could now breast feed and get as much as he wanted. Mom and Carter were very happy with this decision. And when mom and baby are happy, daddy's happy. It didn't take long for the old pro to pick up where he left off. Carter ate like a champ and loved it.
His Grammie, Aunt Faith, Cousin Morgan, Aunt Becca, Grandpa Gerald and Grandma Linda, Grandma Cheryl, and Aunt Sherry all came to visit him today. Wow! What a popular little guy!
I wanted to end today's posting by letting you all know how much we appreciate your continued prayers for our family. I know that everyone has busy lives but we are constantly amazed and thankful for the comments we read every day. It means so much that you all take time to pray and leave messages for us. We do not take that for granted. We are very grateful and ask for continued prayer for Carter's healing.

Play Time

Isn't he cute?? Carter had an up and down day. He has been a little cranky lately, but who can blame the little guy?
Good news: Carter is off TPN and Lipids! The doctor decided that since he was eating so much and so well that he didn't need the extra stuff by IV. This is great news because the TPN can cause liver damage.
Interesting news: We were looking through the notes from his surgery, and it seems that Dr. Schropp removed Carter's appendix at the time of his Kasai. Groovy--one less thing to worry about down the road!
Some mediocre news: he is still draining quite a bit of fluid from his abdomen. His tube was clogged most of the day, but the night nurse, Dawn, fixed it. They still replace his fluids by IV 3 times a day, but they did test what was coming out, and the levels of chloride, sodium, and potassium are all normal. So, we just wait.
Possibly TMI: sometimes his stool (poop) is mustard colored, and sometimes it is a white clay color. This could be bad, but it could also just be a result of the surgery. Again, we wait.
We ended the day on a very good note. Aunt Annetta and Aunt Sherry came to visit, and I think Carter sure must like his Aunties! He was so happy and playful and relaxed all night! He cooed and stretched and smiled!! We took the above pictures of him then. (you can see the heart monitors on his chest, as well as the incision from his liver surgery and his colostomy bag on his left side.)
Oh, and Carter is apparently quite the concerned friend (i.e. Nosy Neighbor!). He heard his friend across the way crying, and he just kept stretching and turning to see what all the commotion was about! Like mother, like son!! (or should I say, "Like Great-Gran and Aunt Faith, like Carter!")
Our friends, Abigail, Valerie, and Scott (her parents) went home today. Hooray!!!
Happy Nurses Day to all of our wonderful nurses in the NICU!!! You are God's angels!

Scattered doesn't even begin to describe my brain tonight. It must be the weather! :)

Today was one of those days that seems like we are getting nowhere. We had heard that TPN (Total Parenteral Nutrition)--the stuff Carter gets by IV can cause severe liver damage. I asked about it, and yes, that is true. The doctor said that although it can cause damage, there is no alternative and Carter needs it right now. He hopes to wane the amount by next week. That sounds to me like we are not taking our little boy home anytime soon.

Dr. Schropp stopped by today to see Carter, and he was "ecstatic about his progress!" He says his coloring is great, and his total bilirubin has gone down. It is now 5.8. This is down from 11.4 a week and a half ago! There are still some other numbers that are high, but as his liver begins to heal (which is possible but not guaranteed) they should come down as well. He also still has a great deal of fluid draining from his abdomen. Generally about 60-90 mL per 3 hours, or 2-3 ounces, which is more than he is eating. That means he has to have replacement fluids. Dr. Schropp says it is possible he could go home with the drain, but he would have to keep the central IV in so we could give him fluids 3 times a day. Ugh.

Plus, I'm becoming an overprotective mother. I'm trying not to, but I'm so picky about his care and how certain things are done. He hadn't been given a bath since he'd been there, for example, although I'd asked about it several times. Finally, tonight, I got to give him one. But the nurse kept hurrying me, so he didn't really get clean. I was frustrated.

There were many amazingly wonderful moments today, however, and I leave you with these: I sat on the floor while Carter sat in a little swing and we talked and sang most of the afternoon (in between cat naps, of course); our day nurse lives in between Lathrop and Lawson and her son goes to Lathrop, so we had much to talk about, which made the day go fast; Carter is more alert all the time--he has longer periods where he seems to feel good and want to interact; my friend's little girl gets to go home tomorrow, so there was much celebrating; and finally, we had several visitors today, which made my day and Carter's as well. Thank you to Denise for a surprise visit, to Linda D for lunch, and Grandpa and Grandma H for dinner!

Oh, one final thing: We are feeling a tug at our hearts to do something to help families in our situation. Perhaps a Ronald McDonald House sort of thing--giving families a place to stay or rest during hospital stays. It's probably far in the future, but we'd welcome any advice or thoughts.

Power of Prayer

I (Sarah) had the most amazing experience/opportunity last night. A mom that I've become friends with told me about another woman who'd had a baby last week born 14 weeks early. Naturally, she was having a great deal of heartache and worry. Well, this woman's sister approached my friend and said, "I heard you singing Jesus loves me to your baby. Could you come talk to or pray with my sister?" So, my friend asked me to come along. We visited for awhile, and then, in the middle of the noisy, busy NICU, we prayed--heads bowed, arms around each other. They asked me to do it, and I was honored. I prayed especially for the new mom and baby, but also for all of us, our babies, and the doctors and nurses.
Please lift these families, especially this new mom and baby, up in prayer. Thank you!

Good Day Tuesday

Your prayers were answered today! Carter had a great day! He was able to rest and regain strength. He got moved to a different pod (part of the NICU) last night, and he's in a busy area. It was pretty loud all day, but he didn't seem to mind. Tonight when we left him he was sleeping.
His Great-Grandma came to visit today. Mommy sure appreciated that! I've had so much time lately to get to really know someone who, although she's always meant a lot to me, I never really knew. She is an inspiration of love and courage to me, and I draw great strength from her visits.
Uncle Geoff and Aunt Emily came to visit, too. So did our friends Monica and Heather. Grammie, Aunt Faith, and Morgan came yesterday, and here are some cute pictures of us with Morgan:








Oh, and here is the picture of my Mother's Day gift...like I said, it's amazing. She plans to make these and sell them for people....and since I'm advertising I get some sort of a broker's fee, right?? Ha!

Dad today

Hello, everyone. I just wanted to let you know what's going on with Dad today. Sarah and I stayed at the hospital again last night. When I got up this morning I went in to see Carter after taking a primitive sponge bath. He was restful but not quite asleep as the nurse gave me the rundown. He had been given a dose of morphine at about 5:30am so he was still recovering from that. His output from the drain in his stomach had reduced significantlly, which is good. They are giving him about a half an ounce of pedialyte every 3 hours. Dr. Schropp had commented on giving him breast milk but no orders have been given yet.
I only have to work 4 hours today so I am home now hoping to rest a little and get a good shower in before hand.
I too, like Sarah, have been thinking about what it's like for a parent to have a sick child. To be a father looking at his son as he is suffering. Scarred and cut by people who, I know, are only trying to make him well. It's hard to look at him and say "when is enough-enough?". It's at that moment the Father gives me a tiny insight to what his love is for us. Watching His son suffer saying His son's death was enough after taking punishment for my sins. It makes it a little harder for me to be mad at God and ask "why?", when I think of what Jesus went through to make me His own. John 10:10

Hand Holder

Carter had a rough day yesterday. This is a picture of him, groggy and sick. Because he didn't have an IV he ended up getting dehydrated overnight and couldn't sleep. The nurses tried 5 or 6 more times to put in an IV, without success. The doctor came to get us at 4 a.m. because our sweet angel was just having such a hard time. So, only about 2 1/2 hours sleep for me (Sarah).
Dr. Schropp decided to put in a central IV, a procedure that is considered surgery. They had to put him under for it. We took him down at about 2:30 Monday afternoon, and he came back at 3:30. The surgery went well, and of course Carter woke right up and was quite mad and probably a bit uncomfortable.
It took me quite awhile to get him to settle down. After about 10 rounds of the "Lay Down" lullaby, he was calm and resting. I turned to go, to let him rest, and then the nurse came and began repositioning him, and of course he got all upset again. She jumped right over him, trying to comfort him and singing to him. That's when IT happened. THE MELTDOWN
I walked, no stormed, out of the NICU, furious and hurt. There, in the middle of the hallway I fell to the floor, sobbing. As a mom of a sick baby you feel so helpless. I had finally been able to sooth him, to make it all better for just a few moments, and it was ripped away from me. It is a hurt deeper than any other emotion to see your child suffer and not be able to fix it all.
And so I cried. And I yelled. And I cried some more. Finally, after a heart-to-heart with my own mother and a long walk, I returned to my baby--who was resting peacefully by that time.
So, why do I publish this story of my weakness for all my family, friends and strangers to see? For two reasons: 1) to be honest about the difficulty of this situation. and...
2)To say this: It goes beyond heartbreak to see your child hurting, as any parent knows. I now have the tiniest glimpse of God's love for us. As our Father, it must be so difficult to see us, His children, in pain, in sorrow, and even in sin. As I drove home from the hospital this morning, it was as if the entire morning program of 3 radio stations had been orchestrated just for me. And they probably had--God moves heaven and earth to mend the hearts and minds of His children. Song after song came across my radio, speaking of God's love, His faithfulness, and our brokenness. He gave me peace this morning, and my heart is filled with Scripture reminding me of His undying desire to heal our wounds. And though I am unable to fix my baby, I know that God is hard at work, healing through the doctors and nurses, and creating a miracle for my son. So, even in the difficult times, I must believe--even when I cannot see. Faith is a tricky thing, isn't it? One song I heard was a song about different names and identities of God. My new favorite: HAND HOLDER. Just as we all walked to Wendy's last night to get some dinner, and I held Morgan's hand to keep her safe, God holds our hands--for safety, for security, and for comfort. He sure held my hand yesterday.
Speaking of being a mom, I got my first Mother's Day gift. A beautiful quilt from my own Mom. Here are pictures (to come...blogger is having trouble)--keep in mind this is a quilt. Hundreds of tiny pieces of fabric sewn together as pixels to form my child's face. Its beauty is beyond description. Thank you, Mom!