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.

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.

Another trip to Vandy but this time was different. This time it was Morgan. I told Will on the way that I was so tired of being afraid. He said at least that way I still knew I was alive. This is true. I guess I'd rather know fear and sorrow than to be numb to everything around me. That's kind of how I felt in July when Lane perfed the 2nd time, like it wasn't really happening. That was scary. Had I grown so accustomed to ambulance rides, ER's, surgeries, hospital stays and the fact that God could call Lane home any given day? Maybe it was God's way of helping me deal with the fact we were once again facing the very thing that altered the course of our lives forever when he 3 days old. The fear was there this past Sunday as Morgan battled a 104.1 fever and a very swollen neck. I watched again as one of my babies suffered through an IV. It took 4 people and 6 tries but they finally got it. It takes a toll on you after awhile. I'm tired of holding down a screaming baby while they're poked and prodded. She needed blood work and a CT scan with contrast. This revealed an abcess on one of her lymph nodes. I told Will as we pulled into the parking garage that worse case scenario would be IV antibiotics. Well, I was right about that but there was also a threat of surgery to drain it if the drugs didn't work. By the Grace of God they did work and we were released on Wednesday, with the oral version of the antibiotics she'd been taking and an appointment to go back to the ENT doctor in November.
We encountered many people we knew from our trips with Lane from the triage nurse to one of the ER docs, to our attending pediatrician, and one of the IV therapy guys. We were also taken back to the CT scan by the same guy who's carried Lane to radiology many times and even the guy doing the scan was the same one who did Lane's in July. Like Jean said we're on a 1st name basis with these people. Good? Bad? I don't know, but it's our life and I am learning every day to be grateful for it, as crazy as it is because it can be taken from you in an instant. Sometimes I still wish it were easier or different but then something scary happens and I find myself begging God to just let it go back to being "normal", our normal. I'm still a work in progress, still learning to be grateful, still learning to trust, still learning to be a better person. I've come a long way since October of '06 but the Lord is not finished with me yet. For my birthday Will gave me a picture that says "Choose you this day whom you will serve, as for me and my house, we will serve the Lord" Joshua 2:1-15 I wanted this as a reminder that God has carried us through the dark until we could see the light so often and that I need to serve Him at all times. I think that I still keep somewhat of an edge to me because I believe Lane Carter's purpose on this earth is to bring me (and others) to God and if I get to where I need to be Lane's work will be done and he will be called home. I've often wondered why, after all I've witnessed and learned, after all the grace and mercy I've been shown, why I still can't get it together. I think this is why. Maybe that's stupid but I have reached that conclusion. Maybe I just need help, maybe I'm crazy.
Morgan's stay was so very different from any of Lane's. We tried to make it an adventure for her. We took a trip to the playroom where, much to her delight, she found Legos she could actually play with! The princess found a castle she could go in with a little throne to sit on, and then found a dragon to pet. It was so cute to watch that sweet little hand reach out and pet a giant mosaic dragon. After all, doesn't every princess own a dragon? We fed her Ben & Jerry's ice cream 2 days in a row, showed her the butterfly garden, purchased a pig in the gift shop, visited the pharmacy and watched the trains. Strolled around the floor and downstairs, eating up all the attention she was getting.
I've always said I wanted her to be a nurse, maybe she just wanted a 1st hand look at what it was really like.
I read on my friend's blog that her dad reminded her that our kids are not our own, that they do in fact, belong to God and that He loves them even more than we do. This is true and we are LIVING proof that we have no idea what God's will is. So last Friday thru Wednesday, God had to gently remind me of this. That NO matter how crazy or hard or unfair you think your life might be, we must be grateful for the gifts in our lives, for the mercy we've been shown, the fact that God may let us hurt but he will NEVER abandon us and that we are all still a work in progress.
I am blessed beyond measure.

Maybe, Just Maybe...

We MIGHT go home tomorrow. I will believe it when I am handed discharge papers. So far today he has made it to his feeding goal, and seems to be tolerating it. His labs look good. they'll redraw them in the morning, hopefully nothing will have changed with any of his levels. Dr. Morgan came in and checked his wound. He is the best surgeon here, but I swear he forgot to close him up! I didn't know people could go around with that much of their tummy open. I know it's the top layer(s) of skin, but still. He felt that it looked good, like it was healing and with no sign of infection. I will now be learning to change a wet to dry dressing. Where's that honorary nursing degree? Lane has had some of the best blood pressures ever this go 'round. His vital signs continue to look good, little bit of a temp but I'm hoping it doesn't get out of hand. He's been pretty fussy at times today but finally settled down.
Debi came to visit us today. We were honored to have had her bring her camera and take some pictures of our little patient for her blog. There is a link to it on my facebook page. It was written with love and the pictures are great. I regret not having more pictures of Lane while we were in the NICU. I also wish I had started this back then. It would've been a great way to look back and see how far God has brought us. A way to remember and give thanks for the miracles we've seen. I know some people don't understand this, some would chose to forget but this journey has changed my life, for the better. There is healing in remembering, loss in forgeting.
I just changed my 1st dressing, and did alright with it. I'll get better with time. The 1st time Sarah made me change his ostomy bag was a joke. Before it was over I could almost change 'em in the dark. Lane humored me and was good during my attempt and now is sleeping peacefully. I think that sounds like a great idea. Good night all...

Our journey continues

So by the grace of God, Dr. Morgan is on call. He must be so tired of seeing Bill, Jean, Will & me in a waiting room. This makes the 6th time. He's done all but 2 of Lane's. Yes, you added correctly, he's had 8. Eight surgeries in 3 years and 7 mo, 2 of which were emergency due to a perforation. You have to question why an innocent child must endure all that he has had to. But back to the story at hand. I signed the consent forms and we went to the 3rd floor to wait. We were the only ones in there which was kind of weird. Of course it makes the 2nd time we've sat in there alone and that's not counting the 1st one back in Oct. of '06. Surgery started at 11:34 and by 1:45 or so Dr. Morgan was out talking to us. It went well and Lane remained stable throughout. He said he found a perforation in his stomach. I didn't know it could do that. It was about the size of a quarter and he didn't know why it happened. He said he didn't think the Baclofen pump was infected, which was a cause for concern earlier in the night. He also didn't find any more perforations in the intestines, even saying they looked remarkably good considering Lane's history. Dr. Morgan explained that he left the wound open so that it would heal with much less chance of infection that way. We are already battling an infection from the perf. we don't need the wound adding to our trouble. Said he would put him on medicine to control the acid in case an ulcer had caused all this. We thanked him again and told him to have a good trip. You see if this had happened Friday, Dr. Morgan would've been in North Carolina. God still has His hands on Lane.

Really?

I never thought I'd live part of my life twice but last Thursday I did just that. It wasn't exactly the same but eerily similar. Lane woke up at 3:00 screaming. We had a pretty rough night til 6:00 that morning. I thought well we're in for a bad day and went about my routine. I noticed his tummy was tight so I vented him but the tube looked fine. Throughout the day I could tell he was trying to throw up but with the Nissen he can't. Well I'll just give him Pedialyte for the rest of the night I thought. After the 4:00 feeding his shirt became soaked. Will thought his diaper had leaked but it was right over the Mic-key button. I sniffed it and said no, that's formula. I raised his shirt up to find the button protruding out of his tummy with lots of air escaping around it. "We need to change this" I said. Will vented him 1st and the tube overflowed. Will took the Mic-key button out and it started gushing. This is not normal. By this time Lane was having trouble breathing. Will listened to him and took his pulse. His temp. was 100.6. "We need to go" I said. "Call 'em" Will said.
Lane and I took our 3rd ambulance ride together. Recognizing the ER staff is your 1st sign that you have done this way too many times. He was given 2 intraoscular IV's. This is where it goes straight into the bone. He needed fluids and he needed them fast. His blood pressure was dropping and it was the quickest way too get them in him. The OR doc was gracious enough to let us stay while they intubated him. I got to watch and Will told me step by step what they were doing. I love my firefighter/EMT-IV! He was sent for a CT scan which revealed free air and fluid around the tummy. Really? You're telling me he perfed AGAIN? Twice in 3 1/2 years? Really? I just leaned on the table and asked if anyone knew what it was like to live their life twice? This was Oct. of '06 all over again. Except this time I was numb, it was like it was happening to someone else, like I was watching a TV show, especially in the ER. "We going to surgery?" I asked. "yes" the doctor replied. "Let's go" I said and walked off down the hall.
At that exact moment, 4 prayers were lifted up simultaneously by Will, Bill, Jean and myself, "God, please let Dr. Morgan be on call."
We were sent to a waiting room on the 5th floor. The door opens. Walter Morgan, dressed in scrubs, walks in. "There is a God"...

Just Breathe

Ever felt like the walls are closing in on you? That's how I feel right now. It's 12:30 at night and the only thing keeping me from walking out that door are sleeping in the next two rooms. That's not to say I wouldn't come back, of course I would, but I'd certainly make a run for it, if only for a little while...
Lane has spent most of the day screaming and what time he was calm he kept burying his face in the wedge. I guess I should have reminded him to just breathe too. At times I feel like that's all I can do.
Yesterday our neighbor came over and said she just needed to draw from my strength. She was having a very hard day caring for her mom. She wanted to know how I do it day in and day out. I told her her the truth. I don't know. I know that wasn't the awe inspiring answer she was looking for but it was real. I do it because there is no other choice, because that is what God's plan for my life is, because I love Lane. Why does anyone do what they do?
So Miss Charlotte, I hope your day was better. Mine sucked but if you were able to have a better day today by drawing from whatever strength you think I have, then it was worth it. I have had a long break from hell, I can take a few more days of it if it will ease someone else's burden.
I know this post is more rambling than usual but that's what no food, no sleep, too much alcohol and too much stress gets you. I'm the only one who reads it anyway.
You have no clue as to what someone's life is truly like unless you live it everyday with them. "Be kind, for everyone you meet is fighting a hard battle."

J. Alexander's anyone?

As usual when we're trapped in Vandy, Bill & Jean either bring us food or stay with Lane Carter while we escape for a little bit and go somewhere other than downstairs to eat. This time was no different except that because Will was on shift they decided to take me out to eat. After being assured that Lane would indeed be fine and that I had a whole floor of nurses to watch over him. I consented to go. Which now leads to the question "where?" Jean named several places, one of them being J. Alexander's. I said "you know if we go there, Morgan will be born tomorrow." Why is that?" they asked. I told them how the night before I was induced with Liam, Will took me to J. Alexander's to eat, then because I like tradition, he took me there the night before I was induced with Lane. We had even planned to go the night before I was supposed to be induced with Morgan but then Lane decided he needed to get Pneumonia, drop his sodium levels, check himself into Vandy and have my induction postponed. What a way to put off having a little sister! Anyway, we went and sure enough at 10:45 that night I woke up feeling bad. Turns out that this was the slow start to my labor, only I didn't realize it at the time. Between Lane & Morgan I stayed up all night. By Monday afternoon whatever was leaking was getting worse. We called Dr. Scott's office and left a message with Wendy. Lane's care partner convinced me to go eat and go home for a bit, that she'd stay with Lane. Either you'll have her or you'll come back here. I couldn't argue with this logic so we headed home. I called the triage nurse on the way and never got called back. I get home, take a bath and get ready to head to a hospital, I just didn't know if it was going to be Vandy or WMC. Will finally got a hold of the triage nurse and she said to go to the ER, tell them what was going on and they'd send me up to labor & delivery. In no time I was given a room, and a very stylish gown and told my nurse would be in soon to check to see if it was amniotic fluid. Sure enough it was. Well, I'm staying here tonight. Good Lord, Lane Carter is in Vandy and here I am. This was NOT how it was supposed to be! Brings us back to "man plans, God laughs". One day, one day I will learn that everything happens in His time, not ours.
I was given pitocin to speed things along and antibiotics because I'd been leaking for so long and had a fever there was a chance of infection. Dr. Scott was called even though she wasn't on call but couldn't be found so I had Dr. Ellington instead. She was awesome. I couldn't have asked for better care or a better delivery.
Everyone was called, arrangements made for Liam & Lane. Bill & Jean came. We like hanging out in hospitals together. Thought we'd give WMC a try for a change. Mallie soon arrived, I couldn't do this without her. She helped me get Liam & Lane here. She couldn't miss this one. After all this little girl was being named after her. Finally Susan arrived I had a lot of fun listening to Will, Mallie & Susan talk as I tried to stay awake. Epidurals should be considered the 8th wonder of the world. Maybe because I was in my drug induced happy place but it didn't seem that long before they said I was at a 10 and ready to go. Four pushes later, Miss Morgan Lellyette Farris came into this world. They laid her on my chest and we swear it sounded like she said "mom". Anyone who doesn't believe in love at 1st sight has never had a baby. She was so beautiful and perfect in my eyes. I had tried to distance myself from her thru the whole pregnancy because of all we'd been through with Lane Carter and Angel Baby. I learned the hard way not to take anything for granted. All that was over the moment they laid that little girl on me. I was completely in love. God had given us the greatest Christmas gift I'll ever receive. She was here and she was healthy and nothing else mattered. Over the next several days as I was surrounded by people I love. I felt more happiness than I'd known in a long time. But more than that I felt a profound sense of peace, that up until that moment, I wasn't sure I'd ever know again.
We came home on Dec. 23, Lane came home on Christmas Eve. I got my Christmas wish this year. I hope you got yours and I hope that at some point in their lives everyone gets to know the kind of peace I felt in the first few days after she was born. A sense that God is in His Heaven and all is right with the world.
God poured out his grace to me in abundance and I am forever thankful.

Praise God from whom all blessings flow

Unrelenting disappointment makes the heart sick. Indeed it seems to deaden a part of the spirit. "but a desire fulfilled is like a tree of life" Proverbs 13:12. The kind of life you might have convinced yourself you'd never know again. God gave me one of my heart's greatest desires on December 22, 2009 as Morgan Lellyettte Farris made her entrance into this world. I have prayed for this day for almost 3 years and though ultimately my prayer was answered it was not without some trials. As I look back over the year I am once again amazed at the way God works in my life. On December 20th 2008, I found out we were having a baby. I was so excited but decided to wait until Christmas Eve to tell Will. I couldn't wait to surprise him with this Christmas miracle. I bought him a lighter to engrave the baby's birthdate on and even wrote him a poem to tell him. He was so happy. The hope of new life filled me with so much joy. Christmas Eve was perfect. That night I knew what it meant to sleep in Heavenly peace. On January 23 I went to Dr. Scott and heard the words no mother ever wants to hear. "I'm a little concerned, I can't find the baby's heartbeat". I was sent for a more in depth ultrasound and it was confirmed that there wasn't one there. I walked out of that office numb. Why would God give me what He knew I wanted so badly only to take it from me? Have I not paid my dues with Lane Carter? "Delight yourself in the Lord and He shall give you the desires of thine heart" Hadn't I done that? I held up my end (or so I thought) now where was my prize? Snatched from me before I even really had time to realize what I'd been given. I confided in only 3 people that this had happened. I knew they could help me try to understand that this was God's will. On the 26th of Jan. I went in for my D&C. This experience left me with an overwhelming feeling of emptiness. Time soon healed me physically and for the most part emotionally. Every now & then something would remind me and the sadness would wash over me like an ocean wave but I never let it pull me in. We had genetic testing done to find out what was wrong and if we should try again. Dr. Scott herself called one night with the results. The baby had Trisomy 13 and wouldn't have lived even if it made thru the pregnancy. It would have had many serious health problems as well as being severly delayed. "Do you want to know what it was?" she asked. "Yes" I answered' "It was a little girl" she said. I hung up the phone and tried to take all this in. I guess God knew how hard having 2 special needs kids would be if she even lived and He certainly knew how hard it would be to loose one. So He spared me all the pain, in a way but why put me thru it in the first place? When God takes something from your grasp, He's not punishing you, but merely opening your hands to recieve something greater.
Fast forward to March of '09. It worked! I'm having a baby! Now comes the hard part. Trust in the Lord enough to believe it will be healthy. I prayed the same prayer every day. "Lord, let it live and not have Hirschsprung's and please let it be a typically developing baby." With every passing week and good appointment it seemed as if we might be granted a miracle. On August 23, we had a party to reveal what we were having. Mallie cut into the cake to find a pink baby rattle! It's a girl! This was the 1st of many "coincidences". If you know me, you know I don't believe in coincidences. Every thing happens the way it does for a reason. God took one little girl from us only to let us find out that we were being given another one. You see August 23 would have been her due date. Now it's December 20, I wake up feeling sick and uncomfortable. I hurt but didn't know exactly what it was and something was slowly leaking. This was my water breaking but since I've never gone into labor on my own and it wasn't a big gush, I didn't know that's what it was. "Coincidence" #2, December 20 of '08 is when I found out about Angel Baby as we call her. One year ago to the day. And Finally Morgan has a little red spot on the back of her head. Lane had one when he was born and Mallie said it was his angel's kiss. I took great comfort in this thought as he fought to live. It made me feel as if he had someone special watching over him, who I don't know, but someone. I believe Morgan's is from her sister. Just a little reminder that she will always be watching over her until the day comes that we can all meet her. I believe God gave me the little girl He wanted me to have, maybe with many of the same traits as Angel Baby but in a strong and healthy body. Morgan is here, she is "fearfully and wonderfully made", beautiful and healthy. Praise God from whom ALL blessings flow...

Man plans God Laughs

This was a favorite saying of Laura, Lane's EI therapist. It certainly seems that way at times. This was supposed to be a perfect Christmas. Will was off both Christmas Eve and day, something that rarely happens, and our little girl was due the 26th. Plans had been made to induce me early so we could all spend Christmas together at home. We've already spent one Christmas apart when Lane was in the NICU, I really didn't want to have to do it again. I wanted to have her on the 21st but Dr. Scott wasn't going to be in the office so we decided on the 18th. Well there was no room at the proverbial inn. All the rooms were booked for that day. How fitting. So we moved it to the 17th. Keep in mind lots of people had everything worked out for the 18th but we changed it anyway. Then Monday the 14th Lane has a bad day and sleeps the entire day and night. 2:oo Tuesday morning he starts coughing and moaning. I kept him home even though he missed jammie day at school. After the 10:00 feeding I noticed his tummy was tighter than I'd ever seen it. That's not good. Dr. Sharpe had us come in to turn down the Baclofen pump again to see if it would help. He was concerned with his listlessness just as we were. We consulted Dr. Morgan's nurse and decided we needed to head to the ER. We were given a diagnosis of Pneumonia (again) and told that his sodium levels were low. This was causing the lethargy they thought. We were admitted. It's OK. It's only Tuesday. I have till Thursday, surely we'll be home by then. Yeah right. Little did I know. We developed a plural efusion which is where fluid is leaking into the space between your lungs. Depending on the amount it can either resolve itself by being reabsorbed into the body or you get a chest tube to drain it. And yes that means surgery. After an ultrasound and a lot of run around, it was finally determined that Lane's was a minimal amount and would probably resolve on its own. Thank God! The thought of another surgery for that poor innocent baby right here at Christmas when he already had Pneumonia was sickening. And then there was the whole inducement thing to worry about. Do we go ahead or not? We decided to postpone it. Lots of people had their opinion about this but ulltimately Dr. Scott made it easy and just said she wouldn't do it. I love her. I went to see her on Thursday and we decided to try for the 28th. Good, that's settled. Of course she won't be here for Christmas but she wasn't due till the 26th anyway. Now back to getting out of here. Lane's CRP levels ( these indicate infection) were on their way down. From 400 to 200. Wow! that's great you say. Yeah, it is except that it's supposed to be like 10. Just keep giving him IV antibiotics and pray they keep droping. Then he gets dehydrated, the IV is shot and his poor little veins won't give anymore. I watched them poke and prod to the point of bruising him something awful. All the while the doctor keeps ordering more labs. Well she's not the one trying to draw these nor is it her baby that she listens to as he screams. I just want it to stop. Why Lord must Lane continue to endure this hell? Put me thru it not him.
So here it is, the 18th. They got an IV in last night and were able to draw labs from it but of course it wouldn't give anything this morning. The few drops they did get were sent to the lab with a prayer that it would be enough. None of us thought it would though. We'll wait and see. He was puffy so he was given a dose of Lasix which caused the dehydration, which caused his Potassium levels to drop. It's a viscious cycle. You can't fix one problem without giving him another. Do you have any idea of what that's like? Of how helpless and frustrated I feel? On a lighter note, Will and the nurse managed to piss off the stupid dietician and then I went over the doctor and got Dr. Morgan to get me some answers. She didn't seem to care for that too much. I have reached the end of my rope and I will do what it takes for Lane. They started in on the blood pressure thing again but yet they never do anything about it other than get all bent out of shape over it. Find out why it's always so high and try to fix it or shut the hell up.
So here we sit. Trapped. They keep ordering labs they can't get, worrying over why his sodium dropped. It came back up and then dropped a little but stayed in the normal range. We may never know why it dropped. We don't anything else about Lane, just add it to the list.
Our nightmare continues. We find ourselves closer to Christmas Eve as each hour slips by, closer to my delayed induction date and no closer to any answers or idea of when we'll go home.
My Christmas wish this year? The same as it was 3 years ago. Just to take my baby home and be together with my family. It is the season of miracles. Will we get ours?

Johnny Angel, How I love him...

Today we we're invited to a family book celebration at Liam's school. They had spent the past several weeks writing about different family members and then compiled it all into a book complete with illustrations, a dedication page and an about the author page. They divided into groups and each read their works to their family that came. Liam wrote that his brother was a special needs boy, that he ate from a pump and that he took care of him. He went on to say how very much he loved him. He told how his Pa had once made him a playground and how he'd just made bunkbeds for him that were awesome. He mentioned that he had an older cousin named Lacey. They like the same things and he likes to play with her. He even included the dogs. Of course he said they were both annoying and then just had to add that his mom sometimes kicks them. ( oh great, now thanks to our budding author everyone thinks I go around kicking helpless animals.) That's ok I guess, Will didn't escape our son's honesty either. Now we all know that his dad is bald and loves to smoke. He did go on to say that he (unlike me, evidently) loves the dogs and works at the fire station. This is what he wrote about me in his own words: ( now I'm guilty of plagarism since I copied this exactly without the author's permission). " I love my mommy. My mommy takes care of my brufer. She like to whach weel of forchin." He read the whole book proudly. You can tell he loves his family despite all our flaws. His little face lit up when we walked in, so happy he was that we both came.

A few weeks ago Liam got to be the star student for the week. They're allowed to bring pictures and special things to show and talk about each day. They fill out a sheet telling about all their favorite things and this and the pictures are posted in the hallway for everyone to see. The parents are asked to write a letter to their child to be read to them on the last day. Now that you all know what Liam wrote about us I'd like to share what I wrote about him.
Dear Liam,
This has been your week to be star student. I'm writing you this to tell you you are my star every day. I am SO proud of you for many reasons. I love your sense of humor. You make me laugh every day and you enjoy making others laugh. Finding the joy in life is a blessing, sharing it is a gift. I love your kind and gentle spirit. You have always cared about others, even from a very young age. You helped Andy find the bus, helped carry the drinks when the lady across the street fell and are constantly looking out for Lane. You inspire me to be more compassionate. I love your imagination, your desire to please, your curiousity and the way those brown eyes of yours sparkle.
I love, admire and am constantly amazed at your compassion and acceptance of Lane. You've treated him with nothing but respect and dignity every day of his life. Life with Lane isn't always easy but you've never once complained. If everyone would treat all special needs people as you do your brother, the world would indeed be a better place.
You are growing into a fine young man with lots of character. You have been a gift from God to me since he moment they handed you to me. I am honored to be your mom.
I love you Johnny Angel, to the moon and back!
Forever, Mommy

So much of my writing (or rambling) is about Lane's struggles and triumphs it seems if Liam hardly ever gets mentioned. I wanted to take the time to share a little of what makes that little boy so special and why he makes my world go 'round.

Deliver us from evil...

It's 6:00 in the morning. As I sit here tired from having not slept again last night, a hundred things on my mind, wondering when the next seizure will hit Lane again, he's had 2 already this morning, the sound of sirens shatters the stillness. "At least they're not coming here" I think. Followed by "Lord help whoever they're going to." I used to love that sound, part of being a firefighters wife I guess, now it makes me sad. In the beginning, it was the excitement of it all. I'd watch Will & his friends get a call, grab their gear and race out of the squad building, I was carried away with this new way of life, filled with pride that my Will and the other guys were on the way to help, be the heroes for a short while. Now I always pray that whoever is waiting on them gets the help they need. I've been on that end 3 times now with Lane and you never know when we'll go again. Part of me still finds the excitement in the medical part of it but now more than ever I know the sorrow and fear that usually follows the sound I once loved.

Lane has so many bad mornings, so many seizures. WHY can't we get these under control? How much worse will they get? I fear I already know the answer to that. Why did Dr. Mencio leave the decision whether or not to have hip surgery for Lane up to us? I am NOT an orthopeadist or a PT for God's sake. Why can't someone just tell me what he needs? Why do I have to pray the exact same prayer over and over every day for the past 3 years? The only thing that ever changes is the symptoms I'm asking God to relieve for that innocent little boy. My faith waivers on some days, a fact that I'm not proud of but will admit to. Other days it is the rock I stand on. Obviously I am still a work in progress on this journey of faith. I've come a long way but have such a long way to go. Will I ever get there? I pray so, Lane is here to teach us all the most important lesson anyone will ever learn. The reward for all the hell we've gone thru? Eternal life in Heaven with our Father and all those we've loved. I mustn't lose the faith I've clung to for 3 years even when I've felt the devil's presence so strongly here lately. That's a very unsettling feeling but I guess it's all part of the great test we're put to every day.

I still catch glimpses of the Lord at work and it is still the most awesome thing in the world but it's harder now. I guess I don't look for them as hard as I did during our 3 month incarceration in the NICU but if you allow yourself to, you WILL see. On Oct. 30 I was called by Lane's teacher and told that he was having a lot of trouble breathing. He was scared and crying and getting choked and thus creating a vicious cycle. I picked him up and took him to the doctor. While waiting a lady came in with her son and noticed Lane. At 1st it was the usual "oh, I love his hair!" comment then she asked if he was sick. I said yes and briefly retold why we were there. She sat down and started talking to her son then came back over to us. She asked if she could pray for Lane. Of course I said yes. She laid her hands on him and asked the Lord to heal him, make him as He intended for him to be and asked for the peace that passes all understanding for both of us. It was very beautiful, much more eloquent than I described it. You want to know the cool part? He stopped crying and wheezing after that. He wound up being diagnosed with RSV but no x-rays were ordered, no trip to Vandy and best of all it was the last time he made that awful gasping for air sound. What is it about laying your hands on someone that's sick while you pray? I still don't know the answer to that, other than it instructs us to do so in the Bible I believe but I do know it seems to be very effective. I've tried it here since then with Lane and seen results more quickly. Well there goes seizure # 3 of the morning. Ok we've now had 4 seizures and it's still so early. This is what makes me so mad. There I've said it. I am mad at God for this whole seizure thing. I know without a doubt that He CAN heal my baby with a whisper, stop these from tormenting him. What I don't understand is why WON'T He? I do hope being mad at God doesn't buy me a ticket to hell after all the times He's carried us on this journey, all the mercy He's shown us, but it's heartbreaking to watch your baby in so much pain and fear when there's not a damn thing you can do to make it stop. I do so long for some glimmer of hope and happiness in the days that lie ahead. Right now I feel torn between clinging to the faith that's brought me thus far or turning and walking away. The consequences of either choice are eternal. But then I look at that precious child, that red haired, blue eyed angel with a heart as pure as the driven snow and choose. For now, one more time, I will reach out and take the hand of Jesus and ask for forgivness. Even if I struggle to find it in the darkness that surrounds my world as of late.