Light At the End of the Tunnel

The light at the end of the NICU tunnel is bright!

Landon is now 37 weeks gestation and 6 weeks old. It's weird to think that I should still be pregnant!

Today, Landon's had his NG Tube (feeding tube) removed. He has been nursing and taking a bottle almost exclusively for a couple days. He was no longer relying on his feeding tube for full feedings!! It was a huge day. When Landon's doctor said, "Just tell me when you want to room-in with him...", I started crying and hugging her. I have been waiting for that moment for so long. His nurse, the nurse who was with him when he was delivered, was so happy to remove it. As soon as the doctor gave us the green light the nurse practically skipped to his bed side and waisted no time pulling it out! Landon did not quite understand the excitement. For him the experience was less positive and just one more time someone was pulling tape from his face and pulling something from his body. Some day he will understand the momentous importance of the event.

NG tube is gone!!! His little cheek is red and irritated with that tube taped to his face for so long.

Big sister is so happy!

Now what? Now we start the paperwork, education and organization to get him home. I can barely type it without my heart melting. Starting tomorrow I will be "rooming in" with Landon in the hospital. For two days I will have Landon in a hospital room with me. We will play, cuddle, talk, eat and sleep. Landon's only job is to nurse and gain weight. As long as he continues to do that he will get to come home. By this weekend our little miracle should be home.

He will be coming home on oxygen. They feel he will outgrow his need for oxygen in a month or so.

The past week he has gained weight every day. He now weighs 5 pounds 13.9 ounces. We started nursing once per day. As his stanima increased we went to twice per day and then to every other feeding and finally to nursing or having a bottle at every feeding. Just a couple days ago he was still getting tired by the end of the feeding and we would have to complete the feeding using the feeding tube. He now has enough strength and stanima to complete the feeding.

The nurses were able to wean him a little more off his oxygen. He now recieves 100% oxygen at .1 liters of pressure. This is the mixture he will go home on.

The Power to Move Mountains. The Power of Prayer.

I am a person who believes and has faith. I am very private when it comes to my relationship with Jesus. If I were asked “Do you believe in God?” or “Do you have faith in Jesus’ love for you?” my response would be, “Yes, with all my heart.” I feel most connected to God surrounded by his creation, on my kayak on the river or hiking through a field of wildflowers. I’d prefer to sit on a mountain top, alone, when having a conversation with God. I pray silently and thank God, often, many, many times a day. Most people wouldn’t realize I was. I’d prefer that my personal walk in faith be a private walk.

Internally, somewhere deep inside of me, I have a drive to know. To know the truth, to know what is fact, to know how and why things happen. This drive to know comes from the part of me that loves science and biology. The biological part of me goes perfectly with the part of me that believes. There are many, many things we do not have the evidence to confirm, but we have faith in these things. Without faith I would feel so lost and empty. I believe we are not meant to know all the answers. I believe that when the day comes when we are walking side by side Jesus one of our rewards is to finally understand and know all the truth.

This adventure, or whirlwind of craziness, that was my pregnancy and the birth of Landon, has only solidified my belief – my belief in the power of prayer and my belief that miracles really do happen. So many people, all over this country have been praying for Landon for so many months. When he was born his story spread like wildfire. I was getting and continue to get promises of prayer from our family, friends and complete strangers. I know with all of my heart that these prayers saved my son’s life. The way a community of believers, of strangers, came together to ask for God’s mercy in my son’s name will forever bring me to tears. I cannot express what this has meant for me – these prayers gave me my son’s life. I am eternally grateful.

Undoubted confidence in faith ebbs and flows. At least for me it does. So often I have asked God for some sort of proof; proof that what my heart desires to know is real. This goes back to my desire to know truth and having the proper evidence that would allow me to call a hypothesis’ truth. Landon is my proof and my evidence. Every time I look at him I feel God’s love for me and I have proof of God’s mercy, grace and great power. Although this journey has in ways been a horrible nightmare, I thank God for the opportunity to see his proof. Somehow, in a demented way, the impossible journey Landon was forced to take has been an answer to a prayer for me. God decided to give me proof though Landon.

Prayer did move a mountain in our life. Have faith in our Lord’s love and pray.

How Preemie Moms Are Chosen

My sister Sara emailed me this sweet anecdote. I do not know who wrote it or where she found it. It touched my heart more deeply than she can know. It is human nature when challenged to ask, “Why Me?” I thank God every day that He chose us for Landon.

How Preemie Moms Are Chosen

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.” I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair."

Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.

"A mirror will suffice."

He has the same long eyelashes as Addison.

Untitled Poem, Unknown Author

I listened to you breath tonight, I never realized how hard you tried.
Our heads together, touching your skin with mine. The touch of your hair so soft and fine.
You’re bigger now, though still so small, and you still shouldn’t be here at all.
Laid on my chest so quiet and calm, nothing else matters with you in my arms.

Landon's Song

Sometimes a perfect song is released that has the perfect lyrics - lyrics I wish I could claim as my own words. Sometimes I hear a song and internally dedicate it to someone special and every time I hear that song I automatically think of that special person or situation. When I was first pregnant with Landon, I Won’t Let Go by Rascal Flatts was released. I knew the first time I heard it that it would be the song I dedicate to Landon. Dylan, Addi and I all know it as Landon’s Song. That one terrible day Dylan and I drove to Great Falls, the day we thought Landon had died because he hadn’t moved in a long time, Landon's song played on the radio. Without any words between us, Dylan and I broke down and sobbed nearly the entire way to Great Falls. I felt I wasn’t going to get the chance to make the words in this song come true. Although I could not do more than love him throughout the time he was inside of me and throughout the time he was fighting to survive after he was born, my hope is he knows that I will literally do whatever it takes to take away his pain and make it my own.

I Won't Let Go
Song by Rascal Flatts

It's like a storm
That cuts a path
It's breaks your will
It feels like that

You think your lost
But you’re not lost on your own
You’re not alone

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go

It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I won’t let you fall
Don't be afraid to fall
I'm right here to catch you
I won’t let you down
It won’t get you down

Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go
Oh I'm gonna hold you
And I won’t let go
Won’t let you go
No I won’t

One Month Old

Our little man is one month old today! The image of my swollen baby and his tiny hand being rushed by me in the operating room remains burned into the front of my mind. The conversation Landon’s doctor had with Dylan and I right before I went into surgery is still way too clear, “I need you both to understand that we are dealing with something very serious. Chances are he will not survive.” The feelings we experienced during Landon’s first hours and days are wounds that remain fresh – uncertainty, fear, confusion, immense love, sadness and guilt. The initial feeling of helplessness was excruciating. It left us feeling paralyzed. All we could do was hold each other and cry. There were no words to comfort each other or help ease the pain. The worse part of it all was there was NOTHING we could do to ease the pain Landon was going through. His battle to survive was something him and God had to tackle together. There was nothing we could do for him. The doctor’s and nurses had done everything they knew to do; the rest was up to Landon. HE SURVIVED. Against literally all odds, HE SURVIVED. He was given a meek 3% chance and HE SURVIVED.

Deciding to deliver him was a bold and courageous decision. A decision not considered lightly by Dylan and I and our doctor. Deciding to deliver him the exact day he was delivered saved his life. Our doctor had been telling us that the day would come that he would no longer be able to survive in my womb, but was still healthy enough to keep him alive outside my womb. By monitoring Landon and I weekly, my doctor hoped he would be able to determine that exact day. He knew the day would come when Landon no longer continued to improve. He knew the day would come that in order to save him he would have to be born. His intense knowledge, faith, compassion and the simple fact that he cared so immensely for our unborn child saved our baby’s life. We cannot even begin to thank our wonderful perinatologists and their teams, both in Great Falls and in Missoula, for the exceptional care and compassion that we received. We are so grateful for our Great Falls doctor; I do not have the words. He had been our rock and advisor for so many weeks. When we told us it was time to deliver and we told him we would like to deliver in Missoula because our family was there he didn’t miss a beat. He completely understood and went to work for us getting the Missoula specialist on the phone and up to speed. We are grateful for the willingness of our Missoula doctor to take us on and deliver our child when he had not even known of our situation the night before.

I feel absolute gratitude and thankfulness to be able to say that my baby boy is doing well. At 35 weeks gestation his little body is busy sleeping and growing. He weighs 5 pounds 2.6 ounces. He continues to gain weight almost every day.

This past week we have been regularly working on feeding. He shows very little interest! He will nurse but seems to enjoy the cuddling more than the feeding. He will latch on and suck several times and then fall fast asleep! He sucks just enough to get the flow going and then kicks back and allows the milk to flow down his throat! The nurses will offer him a bottle of my breast milk if he is acting hungry or wide awake during his other feedings. They say he is still uncoordinated at sucking, swallowing and breathing. This will develop with age. He seems to know what to do but lacks the development to be successful at it. We enjoy trying! I look forward to our feeding times together.

On Wednesday August 10^th he had his PICC line removed. He no longer is dependent on IV nutrients or medications of any kind!! He has his nasal cannula and feeding tube in his nose, a pulse/oxygen saturation monitor wrapped around his foot and three sticky pads on his chest monitoring his heart rate and that is all!! He only has his blood drawn on Mondays. Because he no longer has an IV they do have to prick his little heal once a week to run his blood tests. That is the only invasive thing they have to do to him now.

He is receiving what is considered a full feed for his age, 44 ml every 3 hours, just about an ounce and a half. When I breast feed him, every six hours, we estimate he gets anywhere from 10 ml – 20 ml from my breast. He gets the rest of his feeding through his feeding tube. I am still pumping every 3-4 hours. I feel my milk supply is holding strong! I am able to supply his nurses with enough fresh milk to feed him every 3 hours and I also am able to freeze quite a bit.

On Friday, August 12^th he had a very big day. We gave him his first bath, he was moved into an open bed and he started wearing clothes! He really enjoyed his bath. Daddy and Addison bathed him. He was wide awake and looked all around. He didn’t make one sound. He was very relaxed and calm. Addi and I washed his hair and got him all dressed in big boy, preemie clothes! He enjoys being swaddled up tight in his new bed. He has been maintaining his body temperature all on his own.

Check one of three on his going home check list!

Go home checklist:

ü Maintain body temp

Decrease oxygen dependence

Learn to eat

He is still dependent on the oxygen being delivered through his nasal cannula. Room air, the air you and I breathe, is 21% oxygen. He is receiving anywhere from 30-40% oxygen at .5 liters of pressure. When he is being examined by the nurses or doctor or when we are working on feeding his oxygen needs often go up. When he is at rest or sleeping his dependence goes down. It still fluctuates often. The cannula also helps to keep his lungs inflated at .5 liters of pressure. This amount is really minute and gives him a little help in keeping his lungs inflated. We are unsure when he would no longer need the oxygen.

On Friday, Addison held her little brother for the first time. It was a very tender moment! I will cherish the pictures forever.

5 pounds

Landon is now 3 weeks old and 34 week gestation. He continues to do well. His biggest job now is to grow and grow.

- The big news of today....Landon reached a huge NICU milestone...he now weighs exactly 5 pounds!!

- They will continue to increase the amount of breast milk he receives by 3 ml every 12 hours. He is now receiving over 20 ml every 3 hours (30 ml = 1 oz). Once he reaches 40 ml he will be considered full feeding and will no longer need the IV nutrients! He should reach this huge milestone in 2 days. They will leave the PIC line in for another day or two and give him clear fluids and then take out the PIC line!! Such great news!

- Another HUGE milestone from today...I nursed Landon for the first time! He did quite well for a first timer! He was very interested and knew what to do. He did suck several times and probably tasted several drops of my milk! It felt wonderful to have him so close.

- We still cannot estimate when he might come home. It still depends on his oxygen dependence and learning to eat.

Landon's Teddy watching over him.
A friend to measure him by.

_______________________________________________________________________

NICU life does not get easier with time. The past few days have been very difficult and frustrating for me. I am still very emotional over our situation. It is so hard holding my baby with someone constantly looking over my shoulder. It is hard getting to know your baby at the scheduled hands-on holding times. It is frustrating trying to talk to my baby with the constant nagging of the monitors going off and other babies crying. It is difficult because I know how well he is doing, but he still isn't out of the woods yet. He still is somewhat dependent on the oxygen being delivered through his nose and he still is dependent on his feeding tube. Waiting is difficult. Watching him through his plastic box is difficult. I know...give the kid a break. He has only been in this world 3 short weeks. In those 3 weeks he has overcome so much. It is a miracle he has made it this far. I know all of this. But when a group of complete strangers has to tell you how your baby is peeing and eating and breathing and what his personality is like and the best ways to soothe him...it is too much for me at times. His mother should know these things. I feel like a member of the audience in my son's life. A mother needs to be able to pick up her child and console him when he cries, feed him when he is hungry, clean and bath him, talk and sing to him. It isn't about me, it is about Landon growing and coming home. It just gets so hard at times to not be the one caring for him.

Last week I returned to Helena to work. They are allowing me to work Monday, Tuesday and a half day on Wednesday for a few weeks. They will allow me to work part time for a bit to be able to be in Missoula with Landon for the majority of the week and working the 20 hours per week allows me to keep my insurance. I am grateful for this, but being so far away from him is also hard. Last week I texted my friend, Jessi, when being so far away all of a sudden felt impossible. She has experienced NICU life way more intensely than we will. Her son Jack was born at 23 weeks and I knew Jessi would have the words to help get me through. Jessi said to me, "God is holding Landon when you cannot." I know these simple words will carry me through the rest of this roller coaster. I encourage all to read Jack's incredible story. I think it will change the way you look at a lot of things in your life.

Jessi and Aleta also gave me the most beautiful necklace. It is so simple, yet so powerful. The message reads, "You are worth it all." I often repeat that to myself when everything seems overwhelming.
Dylan is doing OK, I guess. I haven't seem him in several days. This past week he had only one day off that he was able to see Landon. It is difficult having our lives divided between two cities.

Addison has adapted to her new schedule free, chaotic life. She is in love with her little brother. She is so sweet. Yesterday she was sitting with me while I was holding Landon. She was talking really softly to him. He was wide awake. She was telling him that, "Big sister is here. Big sister loves you." She was holding his hand and stroking his face. He really responds to her voice. It is amazing to watch.

Huckleberry Break

Addi, Papa and I spent Saturday afternoon it in the woods picking huckleberries. We were a couple weeks early, most of the berries are still green, but we did pick enough for a huckleberry pancake dinner. Addi nicknamed herself Addi-Huckleberry. Her and I forgot to bring her shoes! So she was hiking along picking berries barefooted! The wildflowers were beautiful. I have never seen so many Indian-Paintbrushes.

It was a great break for all three of us. Something about Montana high country fresh mountain air that revives the spirit. Plus several handfuls of freshly picked huckleberries doesn't hurt the soul either!!