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.