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.

We've Only Just Begun

Sunday night Lane started coughing. not your normal cough but an inhuman barking. This was followed by choking spells in which he would turn blood red and almost raise himself off the bed. Do we go tonight or wait til tomorrow? We decided to wait and see what the night would bring. Monday morning came, the cough had subsided but I kept him home from school anyway. He slept till 9:30 or so. I checked his temp, 91.4, checked his sats, they were like low 90's. I checked again, 88. not good. One more time, 77. Ok let's go. I called my friend Suzi, to see if she could watch Morgan until Will's mom could get there. She came immediately. I know who I can count on. Ambulance arrives. Sats are 79, give breathing treatment, and go. I got to ride in the back again. We had an awesome paramedic. 4 breathing treatments later his sats were better. Stable throughout the whole trip. Hang out in ER awhile, get admitted to PICU. Let the ride begin.

So to make a long story short, he has an airway obstruction, but a clear chest x-ray. They try CPAP, no good. BI-PAP, no good, different masks, still not helping. John, my RT, called in the doc to tell him something else is going on with Lane, Dr. Bondi orders another chest x-ray, "what's that gonna show" ? I ask. "yall have said all day he's moving air beautifully". He tells me some stuff that it might show that could be underlying reasons that nothing was working. Well what it showed was pneumonia. Bi-lateral and completely whited out as they say. On x-rays air shows up black, fluid white. There was only one small area that was allowing air to pass through. God Bless John for knowing something else was going on and Steve Bondi for ordering that x-ray. End result: we wind up on a vent, but not just a regular vent, the oscillator. Let the prayers begin.

Homeward Bound

Daylight came, finally. Last night was long for me but peaceful for Lane. My mind kept going to dark and scary places with the whole low platelet issue. The blood was drawn, the numbers came back and they were up slightly. Thank you God! Dr. Reiderer came in (again with the computer) and said that he was fine with us going home. Still couldn't really explain it but most importantly he didn't think it was any kind of cancer. No need for anymore tests this time. We are to keep a log of Lane's temp for a week or so. I asked at what temp to bring him back and he said to base it on Lane's appearance as well as temp. Low temp, looks good, stay and try to warm him. Low temp, looks bad, bring him in. This goes back to the 1st thing Dr. Walsh taught us in the NICU: watch the baby, not the numbers. Numbers have their place and tell us things we do need to know but so many times people get caught up in them that they forget to look at child. Lane's numbers are different but it's just the way he is. Praise God that Dr. Reiderer understands this or else we could be here indefinitely. We are back on the 4th floor after all ( they converted Pod A of the NICU to patient rooms).

So for now I'll eat my last box of Milk Duds, wait on my discharge papers and reflect on this go 'round. Decent nurses, great care partners and two of the best attending pediatricians we've had, the absolute greatest IV therapist ever ( a lady named Mercedes who got Lane on the very 1st try.) We WILL be requesting her again. A visit from Dr. Morgan, late one evening (more like 8:00 at night) just to see what was up, a long overdue visit from Sarah and lots of time to think back on the past 4 1/2 years. SO many memories on this floor. It's where our journey began in a sense. The place where my life changed so drastically so long ago. It was both strange and familiar to be back there. Passing by the 2 rooms we had during our Pod A stay was bittersweet. This whole journey is full of immense joy and unbelievable sadness, laughter and tears, darkness and light. but it's also brought many blessings and more than a few miracles. It's our life and I will cherish every moment.

Now What?

I thought I was through with surprises. Lane's done pretty good since the tummy perf in July. He had pneumonia in Feb. and we did 4 days in ICU but we've had pneumonia before. His temp was 93 and his sats were low which was different for Lane but still nothing too bad. Saturday he was so cold I couldn't even get his temp to register. 3 thermometers and 5 tries later I gave up and just concentrated on getting him warm. The weekend dragged by and by Monday afternoon his temp was 91.8. Well, we know where we're going. Our "diagnosis" of pneumonia wound up being wrong. They thought maybe his thyroid was causing the trouble and I still think it may be playing a part in some of the issues he has with heart rate, blood pressure, lethargy, temp. etc. For whatever reason this kind of got passed over. I couldn't understand why he could regulate his temp in the past and now all of a sudden he couldn't. A neurologist that had never seen Lane said that it could be his brain worsening. That thought was so sad to me. I accepted his brain damage long ago and though I know it will never get better I guess it never occured to me that it could get worse. How much worse, how soon and what happens then? I feared I already knew the answers to these questions. Did all those seizures cause more damage? They must have. They were so awful for so long. Now that they're not a daily part of our lives I don't worry constantly about what the long term effects are. I spent several hours trying to take all this in. Then Dr. Reiderer comes back and says that Dr. Sharpe (Lane's neurologist) didn't feel that the temperature issue had anything to do with his brain. Good, so I'm happy again. Now he wants more blood work. Still chasing that elusive infection that can cause such low temps in kids like Lane. Blood's drawn, test is done, time for another surprise. You know when the doc brings the computer in with him it can't be good. Apparently Lane's platelet count is low, very low and has been since the beginning. It can bring itself up and then drop again. Still, you think infection but since nothing's showing up you have to wonder what's causing it. Is it a blood disorder, or merely a "Lane Thing". We don't know yet. We do know that it earned us another night in here and another test in the morning. If the number is still low or has dropped even more and there is still no sign of infection from the other 2 tests that are pending, then an oncologist/hematologist may have to look at it. Yeah, that's one specialist I was hoping to avoid. Maybe we still can. This doc understands that Lane is different and that lots of things just can't be explained in our miracle mystery baby. It's been a long day and the night isn't going any faster. All I can do is wait and see what the morning brings. Hopefully something I want to hear. I guess life with Lane will always be full of surprises.