Watching and Waiting

It's been a long day. The house is finally quiet, quite except for the rhythmic hum of Lane's new oxygen machine. As I sit in the stillness I can't help but wonder if this is a sound I will grow very accustomed to. I fear I already know the answer...

This morning began with a sense of peace, hope for a good day. The sun shone brightly and it was so warm. I sent Liam & Lane off to school, happy that Liam knew all of his spelling words. By 9:30 or so Kristi was calling me on her phone. You know this is not gonna be good. He had coughed up a lot of crap just like last night and since I forgot to send the suction machine I needed to go get him. I spent the next 11 1/2 hours suctioning, checking his sats, giving a breathing treatment, and giving him oxygen for the 1st time. I am proud to say that I successfully deep suctioned him for the 1st time today by myself! I must admit that I had a pretty smart EMT-IV ( AKA daddy) on the phone telling me what to do. He taught me how to measure so I'd know how far to go in. That made it SO much easier and took all the fear out of it. I still don't like the feeling of resistance that you have to push thru but I'm sure I'll get over that soon. It is empowering to know you now KNOW you can do one more thing to help your baby. Now if I just could confidently listen to him...

I am thankful to have the oxygen here, to be honest, I'm suprised he's gone this long without it. I'm pretty sure it's kept us out of Vandy tonight. He was just having a hard time maintaining his sats without it. I just worry that with each recurring illness his baseline is lowered. I wonder if there will come a day that he will require it all the time. It makes me sad.

There were a couple of times tonight that despite having the O2 he was clearly working to breathe. I saw the same fear in those deep blue eyes that I saw in May. It is a look that has haunted me ever since and probably always will.

So for now, just as I have every day I've been granted with him, I watch and wait. Standing guard.

I had my week all planned out. Lane changed all that. Seizures last Thursday, very low sats and heart rate on Friday, low temps and lots of secretions on Saturday. Trip to Vandy on Sunday. So I was wrong, it wasn't pneumonia or a wide spread infection or RSV. It turned out to be nothing more than a common cold/ flu virus. Easy enough for most people to shake but not my Lane. It required frequent suctioning and being on Oxygen for going on 4 days now. 3 of which were in ICU. Nothing is easy on that kid. Last night after getting to floor he had multiple seizures, which shot his HR up to 180 and required a dose of Atavan. I had to fling the door open in search of help even though the monitors can be read at the desk. Our room is right in front of said desk. He was 1 hour and 40 min. late with his seizure meds. He didn't eat at 7:00. And people wonder why I hate the floor? Oh well, at least he has a mom that knows him and how to care for him. On a positive note we are lucky enough to have Dr. Reiderer. I love him, he understands Lane. Not all of them do. We managed to avoid it for 5 years, but it now looks like we're going home with Oxygen. That's ok, it's just PRN. With the pulse ox, suction machine, nebulizer, Albuterol, Pulmicort, & oxygen maybe I can avoid a few stays, like this one. Besides its just one more thing Morgan will know all about before nursing school. = )

I would like to say that Dr. Sharpe is an awesome neurologist. Lane's Baclofen pump needs refilling. We are supposed to be there today. The NP that usually does it for me when we're in Vandy is no longer here. To avoid a resident filling it, Dr. Sharpe offered to meet us over the weekend to fill it. That says a lot about him and his concern for Lane. Very few docs would do this. I'm so grateful that he would take time out of his weekend to make sure my baby is taken care of properly.

I also want to say a huge thank you to Mandy & Kristi for coming Sunday night and letting me ride home with them. Lane Carter is so spoiled. Mandy wanted him to be her valentine so she came back last night and spent Valentine's with us. I too am spoiled, Brandon & Amy came to see their niece on Monday night and brought us food. Nobody cooks like they do. It is unbelievably delicious! More importantly I got to be with Amy & meet their daughter. These people are very special to me. I've only known them a very short while but I am just drawn to them. They're coming back tonight. Yay!

God doesn't give you the people you want, He gives you the people you need. To help you, to hurt you, to leave you, to love you and to make you the person you were meant to be. This incredible journey has brought many wonderful people into our lives, some for a reason, some for a season and some for a lifetime. Each have played their role according to His will and though I really didn't want to let some of them go, they have quietly bowed out. This makes me sad at times but then I remind myself that all of this is unfolding just as it should. I know Suzi, Mandy, Kristi and now Amy & Brandon are in my life for a reason, I can only pray that it's for a lifetime.

Vandy Valentines

For some reason my boy insists on celebrating every holiday at least once in the hospital. I guess this year we'll have a Vandy Valentines. That's ok though. In a way it's kind of fitting, after all it was in here that I learned what it was to love unconditionally. As the days faded into one another I came to accept that my baby was going to need care on the most basic of levels for the rest of his life. I finally saw this as my calling in life. Knowing that he would never be able to hug or kiss me, that I'd never hear him say thank you or I love you suddenly didn't matter. I promised him daily that I would always love him, always be there to take care of him and to NEVER give up on him. In my eyes he was Heaven's gift to me. After all God chose us to be his family for a reason. I have tried to honor God by taking good care of him. "what you do unto the weakest of these, you do unto me" maybe that's not exactly how it goes but you get the idea.

It was said many times to me that an extended NICU stay would either make a marriage stronger or destroy it. Ours is stronger for it. There is NO way I could do this without my Will. He's my security blanket, my other half. I'm proud to be his wife and the mother of his children.

I've countless docs & nurses over the past 5 years. Some have treated Lane as nothing more than a patient. Others have clearly loved that baby and it showed in the care and compassion for him and us. Those people are the ones I not only adore the most but admire. Dr. Walsh & Dr. Morgan were clearly 2 of these people. Sarah & Abby and most of the PICU crew fall into this category.

I've always told Mandy & Kristi they had to teach him but they didn't have to love him. They do both. I am honored to call them friends. They are amazing, wonderful ladies.

Liam learned at 4 what it takes some people a lifetime ; acceptance. Morgan will always know. This journey has taught me a lot about love, I've seen who's willing to walk the long road home with us no matter how hard it gets at times. I've seen who's only there for the good and I've seen who's there when it works for them. I'm not saddened by this, I'm glad I know. I just pray that I can be the kind of friend that a few of mine are. There without fail, standing by for when I need them the most.

I wish you joy and I wish you happiness, but above all this I wish you love. I love you Lane Carter, I will always love you

You will always be "my special Valentine"

Do you know what it's like to go to bed and wonder if it is possibly your child's last night on earth? Probably not. I do. What makes it even more nightmarish is knowing the decision partly lies in your hands. Last Wednesday night I did exactly this for the 2nd time in 7 months. Lane was showing signs of being ready to be extubated on Tuesday but given our decision not to re- intubate

if he couldn't breathe on his own, Dr. Strolher wanted to

make certain he stood the best chance possible. He chose to wait until Thursday. He said if it were any other kid he'd extubate then. I was grateful for his understanding

and compassion. Facebook was flooded with statuses about Lane, requests for prayer. The response was amazing. As I read each one and all the responses, some from people that we don't even know, I was once again reminded of how many lives this child has touched. Kristi even made Lane's picture her profile pic. It's very humbling to see so many people love your baby. Except that Lane has never been "my" baby. He's always been "our" baby. So many people have taken care of and loved Lane from day one. I'm honored to share him with so many wonderful people.

Making the decision to let your baby go if the only way he can stay is to be intubated or have a trach or have medicine keeping his BP at level that can sustain life is hell. It takes courage, selflessness, strength, love and an enormous amount of faith. These are all things that child has taught me. Watchn your baby struggle to breathe, seeing the fear in those blue eyes when normally he shows no fear, knowing he's tired, is hell.

I went to bed that night with surrender that I don't know what's best but He does, thankful for the blessing that is Lane's spirit and tenacity.

Amidst the unbelievable sadness was the peace that a God who knows us before we are in our mother's womb would never, and will never look away.

"Please God, hear the prayers of many tonight".

Friends

Lane Carter has taught me many things in his short time on this Earth; faith, strength, courage, acceptance, unconditional love, patience, I could go on and on. He has also taught me a lot about friendship. Lane has an ability to touch people in ways others can't. Mandy says there are kids in her class who will only respond if she tells them Lane wants them to do what she's asking. He had 2 little girls the past 2 years in his class that just adored him. They always sat with him and held his hand. Liam and Lane have never played together a day in their lives. Never laughed together, fought with each other, shared secrets, ganged up on me together, or done any of the things brothers do, yet I've heard Liam call Lane his best friend. I have seen Liam finish reading a book to Lane after I had to quit to deal with Morgan. This is a child who has to be threatened or bribed to read aloud to me. His love for and acceptance of his brother is a beautiful thing. Even Morgan can sense that there is just something special about Lane. She loves to "turn" his pump off, watch for the bus, push him in the house after he gets off the bus, put his cart away and generally try to care for him. I have watched as she has tried to feed him her snack, change his diaper, dress him, give him his meds and even listen to him with the stethoscope. I love to hear her say "Lane Lane".

It melts my heart. It's funny to see her try to pick him up. One of my favorite pictures of all is Morgan and Lane laying in the floor wearing their Christmas shirts, holding hands. So sweet, so genuine.

The world may see Lane as a special needs kid. Someone to be passed over and brushed off. I know this as I have witnessed it. There are few words for how this makes me feel. To Liam, Lane is his baby, his best friend, quietly watching over him and protecting him. To Morgan, Lane is her big brother and she plays the role of the annoying baby sister perfectly. One minute she's hitting or scratching him the next she's laying her head on him or climbing up in the chair just to sit with him. Her desire to care for and nurture him will make her a fine nurse one day (I hope).

There is not a day that goes by that I don't wish Lane was a typical baby but I also know that Liam and Morgan are being taught lessons that will shape their lives in ways I never could. The compassion, understanding and acceptance they show are all born out of their love for their brother. I know this is part of God's plan, part of Lane's legacy. I am forever grateful for this.

I have been taught the true definition of friend. There are many people that find time for us in their busy schedule when we need them. There are a few who never look at their schedule when we need them. These are the people who start praying when they hear sirens that it's not for Lane, answer the phone every time it rings, day or night. Come sit with Morgan even though their own child is home sick. Spend the night at my house with my kids, constantly bring me food, feed my chocolate addiction even though they've made it their mission to make me eat better, teach me to love smoothies, and have an uncanny knack for knowing when to show up on my doorstep just because they somehow knew I was having a bad day. These are the people who drop everything and come to Vandy no matter what when he's here. Who pray without ceasing, who teach, work with, challenge, play with, watch over and love my baby. Those who give up their weekends or nights to babysit or just hang out with me.

These are the people I let my guard down around, those I allow to see the hurt, the fear, the anger. These are the ones I laugh with and whine to. The ones who see the tears when the rest of the world sees only the smiles that mask the pain. Friendship isn't about who you have known the longest...it's about who came and never left your side.

" I thank my God upon every remembrance of you". I love you all.

Baby steps

Take it slow people, take it slow. This is my prayer for the next day or two. Lane is doing better, off the antibiotics as they feel this is all viral, off the Norepi (BP med), on minimal vent settings and even breathing over it. He is still swollen and his output is not what it should be. We have to get rid of some of this fluid before they try to extubate. He probably wouldn't succeed if they were to try with all this fluid he is still retaining. This is where the fear comes in. We said they have one chance for a successful extubation. If he isn't able to breathe on his own and should require a 2nd intubation we have chosen not to put Lane through that. With that being said I now get to live in fear that they'll try too soon and if they would just wait a little longer he'd be ok. I can't live with myself if I thought it was our fault, pushing him when all he might need is a few more days. I know that he's breathing over it and that the longer it stays the greater the chance of infection and he sure don't need that BUT... You can't push Lane. Every time it comes back to haunt you. Learn from the past people and don't cost my baby his life trying to be aggressive in his care.

I know that Dr. Strolher understands this and will have Lane in optimal shape before he even considers extubation but it's still scary.

People are always telling Lane to fight. How many times is he expected to do so? Did anyone ever consider that he might be tired? I know I have. I told him in May that if he was tired it was ok, that he could let go and I'd see him again one day. He showed me that he wasn't ready. He had a great summer, did so well in school, blew bubbles for his friends and saw how much he was loved and how many lives he's touched on Oct. 10 as nearly 100 people came to celebrate the miracle that is his life. Now we're back to being sick all the time. God understands our prayers even when we can't find the words to say them. I am grateful for this. As we are once again faced with heartbreaking decisions. May the grace and mercy of our Lord fall fresh upon us.

Another Christmas miracle needed

Once again we find ourselves in need of another Christmas miracle. It is Dec. 9 and Lane has bi-lateral pneumonia, low blood pressures and a widespread infection, possibly in the blood. We knew he was getting sick and tried to tell the pediatrician he had pneumonia. She wanted to treat him as an asthmatic and prescribed Pulmicort daily. Said he sound worse than he was because it was all upper congestion. We saw an ENT and a pulmonologist. They both sent us on our way. Guess you have to be an EMT-IV and a wanna be nurse mama to diagnose your child's correctly. Stupid people. So here we are in ICU, on a vent. Again.

I have a baby girl that's going to turn 2 on the 22nd,who deserves a party. I have a 3 little kids and 0 little presents and a child that is having to fight yet again to live. Can someone please tell me why none of this seems to bother me? I prayed last night that God would take this numbness and replace it with hurt and fear and the faith I once had. Maybe I know that in the end Morgan will get her party, Santa will indeed come and the magic of Christmas will fill our home once again. As far as Lane goes, well, how many times has he proved them wrong? I know he's sick but I'm counting on God to tell me when it's his turn for our angel again. Ultimately, I know Lane is not ours, none of them are, they belong to God and He will want Lane back someday. Despite it all I just didn't feel that May was it, I don't feel this is it either. I pray God will allow Lane to tell us and that He will back that up. God does speak if you shut up and listen long enough. At any rate, I just wish I could feel God holding on to me, I KNOW He's got Lane, He's never let go of him. I just don't feel His presence like I used to. How I yearn to...how I yearn for peace and rest and mercy for that beautiful baby.