100 days in the NICU

   I promise I am going to get you all caught up on my journal entries to Berkley soon so you can see what our day to day journey is like and how far he has came.  Life has been a little crazy with me going back to work, hospital visits, driving back and forth to Florence and Huntsville, and moving.  GOD IS SO GOOD! Through it all, we are smiling! Berkley has made tremendous leaps the last few weeks.  We are closer and closer to going home with each day.  I’ve had a lot on my heart lately and just not the time to share it all. Today, I am making time. As we approach 100 days, there are so many things I want to share with other Moms. So take what you would like.  If you have met me on the right emotional day, you know I’m a talker so I tend to do that when I write as well. J

   100 days.  Let that soak in.  That’s right, 100 days in the NICU. 1-0-0 days that your baby is in the hospital!!! Some days it feels like just yesterday when Berkley was born. Others make it feel like it was years ago.  Every. Single. Day. weighs on you.  There is no way around it. No matter how positive you stay, there WILL be days that just tear you down.  Being completely transparent, I cry… I cry a lot.  Do people see me do it? Most days – no. My husband, Wes, will tell you I am a super emotional person.  I get teary – eyed at everything even before Berkley.  (P.S. I love you, The Notebook, and Marley & Me get me every single time!)  Never be ashamed that you cry.  Tears are our way to let go of the stress, anxiety, worry, and fear. BUT some days, you do need to wipe those tears away and focus on what is good! Whatever it may be. For us, it was that Berkley has never had any digestive issues or feeding problems. We thanked God everyday for this.  (He is now up to 5lbs 11oz from that 1lb 14oz little baby!) Each baby has their own problem as preemies.  But they also have something we can be positive about as parents.  I thank God everyday when I pray over Berkley in the morning. I thank him for Berkley being here with us and what is going right.  I pray for items that Berkley needs strength on.  (In our case it has always been his lungs. Berkley was on the vent for a VERY long time!)  I tell you this as a Mom that is there every day with their baby - If you focus too much on the bad and the situation we are in, it will tear you apart.  We all deal with things our own way.  I just encourage each of you to thank God for something that is going right with your baby atleast once a day.  (God must be in your life to give you comfort and strength. Philippians 4:13 “I can do all things through Christ who strengths me.”)

   In the beginning, you are so worried about your baby, that nothing else crosses your mind.  You do not realize all the other emotions you are going to have.  First, having hormones AFTER a baby – who knew they were so crazy?!?! Secondly, you add having a baby in the NICU where all the fears and anxiety are doubled – you might as well count on emotions being high.  You get your feelings hurt easily.  (Atleast, I do.)  At first your feelings are hurt by nurses who are completely doing their job and putting your baby’s health as a #1 priority.  As the Mom though, all we hear is “give me your baby back”, “you can’t take care of him/her as well as we can”, “it’s time for you to go”, etc.  Looking back, my feelings were hurt by silly things and I LOVE each and every nurse that Berkley has had. (YOU HAVE BEEN LIFESAVERS FOR HIM AND FOR US! WE LOVE YOU!!)  Secondly, your feelings will be hurt by family and friends.  It’s so hard for them to understand at first why you are distant, to comprehend that your life has been completely turned upside down, and to understand you wanted the stretch marks and hot, humid, awful summer pregnancy. You’ll be pleasantly surprised by the amount of STRANGERS that offer help and your family/friends that bring food, send love, support, and prayers, or even something that will make you smile for a minute like a ‘thinking about you’ card.  Your feelings will get hurt unexpectedly when people you love do not come visit you at the hospital and their life carries on as normal.  It’s crazy, but as a NICU parent, you feel like their world should stop rotating just like yours did.  The world stands still when you are behind those locked doors of the Neonatal Intensive Care Unit.  Every week, my feelings get hurt.  That’s part of being here 100 days – your emotions run high.  (Wesley, I love you so for putting up with me!)

  The biggest part of this hurtful journey – your baby.  The pain that the NICU can cause is unbearable some days – but if you will let it, you can find JOY there too.  Our world rotates around Berkley.  We are there every care time if we aren’t at work. (We thank GOD for the means and flexibility to be able to do this.  Johnny and Christie – THANK YOU! THANK YOU! THANK YOU! and Mayfair Church of Christ for the Shanon House!) Berkley’s journey has not been easy, but compared to others it has been.  We have seen families come in and out as we have waited patiently for our turn.  We have cheered on other folks that have been there forever and truly celebrated with them when they got to go home.  We have sat by the bed and cried.  We have cried happy tears when celebrating milestones.  We have called dibs on this diaper or snuggle time.  I have taken LOTS of pictures! We have tried to make this as normal as we can.  But, the fact is, this is not normal. You can make the best out of it by making your marriage stronger, building relationships with the staff, and loving your baby with every single ounce of your being.  I truly believe Berkley pulls from us on some days.  If we are full of anxiety and stress, he can feel that.  But if we are positive and just love him (truly what our job is as parents) then he can pull from that as well.  I read a quote today that I loved. “A MOTHER’S LOVE IS THE FUEL THAT ENABLES A NORMAL HUMAN BEING TO DO THE IMPOSSIBLE.”  That’s what we are doing every day – the impossible. One day, we will look back and think, ‘how did we make it through it?’ (For us, the answer is God. 1John 5:14-15; Ephesians 6:18; Jeremiah 29:12; and Mark 11:24)  I pray one day soon, all of you wake up in the middle of the night to you baby crying.  I know I will cry happy tears when that day comes.  I pray for all of you every day and will continue to long after we go home. I am thankful for this journey as it has been an eye-opener for us. I think about the families that have been here longer than 100 days.  You inspire me and give me strength just by wearing a smile on your face.  I hope I can do that for the Moms following in my footsteps.

To all Moms – Lean on God. Ask God. He will answer. He loves you. 

Days 40 - 42

Day 40 - May 11th
Dear Berkley,
   Today you are 3lbs and 30 weeks corrected! Your feedings are going to start back at 12 mL and increase to full feeds as soon as the Docs can.  You are really alert today even though you are still on quite a bit of pain medicine. Surgry has helped your vent settings already.  The infection is the root of all these crazy vent settings. I have asked everyone to specifically pray for your lungs, rest, growth, and recovery. 
   Everyone is coming to visit this weekend! I read the book Aunt Tracy got you to you all the time.  It is called, "I prayed for you". I love this book! It talks about the many prayers a Mom has for her child as he grows.  One day, I hope you get to read it back to me.


Day 41
Dear Berkley,
   Your pain meds were stopped at 7:30pm.  Your feeds are back to 24mL and you are handling them well. I'm praying you have a restful and easy night.  Dr. Buckley came today and your first incision is starting to scab from the inside.  This is exactly what he wants so now the dressing is off of it.  Your newest incision is starting to drain a little.  When I look at your leg, with both cuts, it makes me cringe.  I wish I could take your place.  You don't act like it bothers you too much, but I can't imagine having my whole upper leg cut open.  You are so brave!
   Dr. Morris told us today that you have pneumonia. The respiratory therapist have started doing Chest PT on you where they beat on your chest to help break up the mucus, etc. It is frustrating to hear this because you just can't seem to catch a break. With your lungs being chronic, we need more healing time for them....not pneumonia! We just don't always get the answers or solutions we want to hear.  I am praying for the doctors to be able to catch things sooner, or before they start. July seems to get farther and farther away each day.  Dad and I are trying to stay positive and patient, but it so hard!


Day 42
Dear Berkley,
   You grew overnight! 3lbs and 4oz! It is Saturday so Dad got to be here all day with us! You love him so much! We laughed a lot today at you were smiling.  I feel like you were laughing too when Dad was playing with you and being silly.  I can't wait until we get home and he can do all the things he wants with you. I know you are going to have a special bond.
  The last week has been hard on me.  You are doing great, but another surgery got to me.  I just hate setbacks for you. I sense you are hurting and that hurts me.  I am trying to stay positive, but it is so hard! This whole situation, the hospital and all, is so tough! But no matter what, we are right here with you.  I am not going anywhere. I just wish I could keep you safe and away from all of this. Tonight, Dad is taking me on a date - dinner that isn't the cafeteria! Hopefully this will help me take a breath and regroup.  See you bright and early little bear.


Sleep sweet. Grow big. Be brave. I love you.

Days 34 - 36

Day 34

Dear Berkley, 

  You were your fiesty self this morning. Dr. Buckley came by to change the dressing on your leg.  He removed the drain tube as well.  (Surgery details on Day 31)  You incision is the length of half your thigh.  It's not stitched together as the doctor said it would heal from the inside out. It's looking good and healing as it should.  You were mad at the world after he left.  Your pain medicine was stopped at 5am so you definitely felt some discomfort after his visit. You have just a wrap around your leg now. 

  Your care times are now at 8,11,2,and 5.  I LOVE this! Even though I spent a lot of time with you, I wasn't able to be in your isolate or touching you.  Now, we get to do diaper changes and talk to you more! (Not that the glass stopped me before ☺) I love care time because I can hold your hand or rub your head.  You already have a sleepy spot right above your nose on your forehead. 

  We take for granted that our plans are going to happen exactly how we want.  We have learned that this is not the case!  I'm a huge planner so the NICU makes me question numerous situations on a daily basis. I know I have to drive everyone crazy asking all of these hypothetical questions.  I have learned a lot and hopefully that will prepare me to take better care of you once you are home. One thing that I know I will never question is your Daddy's love for us.  He has a lot on his shoulders and takes it all with a smile.  I've been a little crazy on most days and he always manages to make me laugh and calm me down.  He loves you so much! This experience is bringing us closer as a family, closer as husband and wife, and closer to God.  

Day 35

Dear Berkley, 

   You are now at 2lbs 11oz and 14.25in length.  Now that your feeds are back up to 18mL you are going to take off like a firecracker! We are planning on going home today for Brian and Leah's wedding if you behave.  (Dad has already gave you the pep talk!) They can't wait to meet you! We hate to leave you! Soon enough, you will be going to wedding and all kinds of events with us! 

  I can't believe we are in the month of May.  Time moves so slow, but so fast. I pray for God to continue to make you stronger.  I pray for God to make you comfortable and show you he is right there with you. I pray for your infection to be completely gone and your body to heal.  I pray for your femur to heal and grow strong.  I pray for you to feel our love and know we are here with you every minute we can be.Everyday in my prayers, I also thank God for his many blessings. I thank God for you.  I thank him that you are strong and brave. I thank him that your feedings are going well with no signs of digestive issues.  I thank him for your growth.  I thank him for you becoming alert and focusing more with your eyes.  I thank him for the doctors, nurses, and the NICU staff that take care of you daily. God is Good! He has provided for our needs and he will continue to provide.  I love you so! 

Day 36

Dear Berkley, 

  Well, little bear, you listened to Dad's pep talk. You had such a good evening! We go to hug all of your aunts and uncles.  They all asked about you and can't wait to give you some loving. They love you already.  It's amazing to have friends that can love you before they even lay eyes on you. We are so excited for you to be a part of their lives and them a part of yours! (This is the first night we have stayed away from the hospital.  Even though we missed you like crazy, we definitely needed the break of sleeping in our own bed.)

    Dad and I  got to "cradle" hold you for the first time today. I just cried like I did the very first time I held you. It was so different being able to look down at you and you looking up at us! I love just watching you. You are changing so much! I love our Kangaroo time, but this was different since I could see your face the whole time. It was also great because Dad and I both got to hold you where when we kangaroo just one of us can per time. Pawpaw and Gammy came to visit you today on Gammy's birthday!  They got to come back while I held you and talk to you.  Gammy just kept kissing me on the head to give to you! They couldn't believe how much you have changed in just a few days. They are so ready for you to be home and so is Poppa and Nanna.  Your grandparents are going to spoil you rotten kiddo! (and that's not counting your Uncles and Aunt B or Aunt JenJen!!) You have so many people that love you!

Sleep sweet. Grow big. Be brave. I love you. 

Days 24 - 26

Day 24
Dear Berkley,
   Today, I got to kangaroo with you for about two hours and Gammy stayed and sat with us. You are looking better every day since surgery. A lot of your swelling is gone. You are growing bigger and getting stronger. You were back to your feisty self today which I love. First day since surgery that you have been more alert and back to yourself.

Day 25
Dear Berkley,
   Today is just Daddy and you. I was at the ER with a fever last night. Since they aren't sure what's causing it, I'm staying away from you and the other babies for 24 hours to be safe. it's so hard to not come and see you. I think I drove the nurse crazy today in between Dad's visits. You are up to 15mL in feedings. You have some swelling in your right leg and feet but they think thats just fluid from surgery.
 Scripture from devotional today was Isaiah 49:23 "Those who hope in me will not be disappointed." We have been and will continue to put all of our hope and faith in God. He is the great physician and I watch him work in you everyday as you grow stronger.

Day 26
Dear Berkley,
   I missed you so much yesterday! I was so happy to see you this morning. Uncle Jeffery and Aunt B are coming to visit you today. They are counting down the days with everyone else until you come home. Everyone is waiting to love on you.
   Overnight, your right leg and foot has become more swollen. They are going to do an xray and ultrasound to see if there is anything else going on. Your rate on oxygen is 35 and pressure is down to 24. Making progress since your PDA surgery.
   PM update: Xray did not show any broken bones. Ultrasound did not show any blood clots and showed good blood circulation. The doctor does not have an answer right now but we are praising God it was neither of those. You looked the most comfortable you ever have looked tonight after 8pm cares. You had your foot propped up and was laid back relaxing. We love seeing you so peaceful. I know you are going to rest well tonight so maybe we will too!

Sleep sweet. Grow Big. Be brave. I love you.

Days 17 - 20/1st surgery

   Your baby's first surgery. I'm sure regardless of what age is scary. Being 20 days old and premature...well, that threw me into a new scare I've never experienced. I don't know why I doubted Berkley. I should have known he is one tough cookie and would go through surgery easily. Well, I say easily. He had some obstacles, but surgery went well and medicines helped stabilize him. It took him almost a week to recover as you will read.
   God has taught me so much in the last few years, but in the last month he has SHOWN me so much. There is no way to doubt God when I look at our miracle. HE is there. Our heavenly father is always there - loving us, comforting us, supporting us, guiding us, and teaching us just like our fathers do.

Matthew 7:7-8
7 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.

Day 17
 Dear Berkley,
   Today I got to hold you again. I love our time together. Its so special to me now. Something I know is I cherish every moment 100x more than I ever imagined I could. Watching you overcome every obstacle that is thrown at you is something I will never let you forget. You are brave, you are strong, you are a miracle.
   The doctors confirmed you will have surgery in a few days. I just know you are going to feel so much better after it.

Day 18
Dear Berkley,
   The nurses are getting you ready for your surgery tomorrow. You have moved into an open bed. Now that you can hear all the noise and see all the light, you are not happy. You do not like all the activity going on surrounding you.  I love the open bed though because I can kiss you whenever I want. We will be here at 5:30am to spend some time with you before the doctors come at 6am. Surgery is scheduled for 7. Dad got to kangaroo with you tonight! You were so relaxed on his chest. I love you both so much!

Day 19
Dear Berkley,
   We are so proud of you. Today you had surgery and you did great. Everything went smoothly. The surgery itself only took 15 mins where it took almost two hours to get you ready and settled. The worst part for us was the waiting and watching them get you all ready for surgery. You are so strong. Some days, I think more than us. You are resting well after surgery. Pawpaw, Gammy, Nanna, Poppa, and Uncle Jeffery were all here. The NICU doctors and Dr. Clay are really pleased with how you did during surgery, your color, and oxygen levels right now.
  Dad and I talked tonight about how we are more at ease, but still very anxious. God wrapped you in his healing arms today. We are so blessed. Time is flying by, but standing still too. We are counting down the days. Praying extra tonight that you sleep well little bear.

Day 20
Dear Berkley,
   Buddy, you had a rough night. We got a few calls during the night about your blood pressure being lower than they liked and extra fluid build up.  This was all expected from surgery. I'm sitting with you now. You seem to be resting well and will open your eyes every now and then - almost to see if I'm still here. Your vent levels are up quite a bit, but the doctors expect that from your stress and possibly some fluid around the lungs. They will put you on some medicine to help work some of the fluid out.
  Today, my friend, April finished a nursery piece for you - a map that has on it "YOU ARE OUR GREATEST ADVENTURE". This holds true more than I thought when I asked her to do it before your arrival. I knew this would be a fun adventure, and truly the greatest for me and Dad. I did not count on it starting in April instead of July. But all in God's timing, not ours. We have so many things planned for you. We can not wait to see you experience things for the first time. Dad has a whole list, I'm sure half of which I will not approve. As April said, your adventure awaits. I love you so.

Sleep sweet. Grow big. Be Brave. I love you.

kangaroo time with Dad

Sitting with you after surgery

Being a Mom is hard...

   I knew that being a Mom was going to be hard. I never counted on learning how hard it really is so early in Berkley's life.  Being a mom to a preemie, to a micropreemie has changed my life.  I have a bond with complete strangers now solely on the fact that they understand me. They understand who I am now and the emotional rollercoaster I've been on since Day 1. They don't question why, they just nod in agreement with tears in their eyes. Some days you just hurt. Some days you can't get a grip on your feelings. Some days you want to be a hermit. Some days you are frustrated. Some days all these emotions and thoughts flow through me, but then I remember how strong Berkley is. For him, I'll stand in the storm.

You feel lost and helpless.

The answer to the question "why?" always seems to be "Because he's a small baby."

You can't go whenever you want and hold him or even touch him.

You try to stay positive.

When will the next roadblock be?

Will it be surgery?

Days are long and a mixture of good and bad mostly.

You stare at the Isolator wondering if he will ever get to go home.

You wonder if he knows you are there when he can't hear you or see you.

You hurt when he cries and you can't hold him close.

You ask yourself, Why him? Why us?

Sleepless nights.

Where will they put the IV next?

You celebrate milestones that most people never even experience.

You see babies get admitted and going home while he is still here.

You haven't been home in weeks.

You avoid phone calls and text just simply because you can not emotionally handle another conversation.

You lose track of the date and even what day of the week it is.

You question God's plan.

Some days you dont share news with family and friends.

You cringe when you meet a new doctor because you know something is not 'right'.

You look at every detail of him to see if anything has changed.

Did I eat today?

You pray. You pray a lot.

There's even more tears.

You wonder what he will be like, but then are reminded to take it day by day.

You wouldn't change it because he is here. You are able to touch him, to see him face to face, and to tell him you love him.

You know his life has already changed yours.

You thank God for your miracle everyday.

“She stood in the storm & when the wind did not blow her away, she adjusted her sails.” – Elizabeth Edwards

Days 14 - 16

Day 14
Dear Berkley,
   You have your little hands on everything. You pulled your eating tube out today while Mrs. Monika had you. She says, you are trouble! Your feedings are staying at 9mL until you get your last dose of medicine for the heart murmur. You are in the 2lb club now!
   I got kangaroo time today for a few hours. Dad sat with us and you just snoozed. Gammy, Nanna, Poppa, Uncle Tristen, Gracie, Uncle Jeffery, Aunt B, and Ty all came to visit today. We are all ready for you to be home.

Day 15
Dear Berkley,
   Happy 1st Easter! Today we celebrate God's promises. An old hymn has been stuck in my head for days, you have heard me humming it...Because He lives we can face tomorrow, Because He lives all fear is gone. What an awesome God we have! Everytime I look at you, I am reminded of his love, power, mercy, and our salvation. He has blessed us to be your parents, maybe that in itself is our calling. I will always teach you to go to God for guidance. He will never leave you.
   Dr. Israel is coming by in the morning to meet with us about your murmur. I am still hopefull for no surgery, but it's looking as if that is in God's plan.

First Easter!

Day 16
Dear Berkley,

Isaiah 40:11
 《He tends HIS flock like a Shepherd. He gathers the Lambs in his arms and carries them close to his heart. He gently leads those that have young.》

We talked to Dr. Israel and Dr. Clay, heart surgeon, today and their recommendation is surgery to close the PDA causing your heart mumur. At this moment, the PDA is causing more respiratory issues and your levels have been fluctuating daily. They expect the surgery to take about an hour. We are scared, but praying for the doctors and nurses and for the surgery to be successful. God is with you, us, and them. He will carry is through this. I heard this scripture today on the radio as I was crying about the surgery. God always knows how to give us answers and this was Him telling me everything was going to be okay. He is carrying you. He is leading me.
   Every day now something is changing about you. Your hair is darker, you are growing in length, your eyes are opened more, you are forming new wrinkles, and love to keep your hands right by your face. You are the cutest! You have been resting well. A lot of times you give us just a one eye peek when we talk to you. You make us so happy.

Sleep sweet. Grow big. Be brave. I love you.

Days 11 - 13

Philippians 4:6

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.




Day 11
Dear Berkley,
   Today we are PRAISING God! You have NO brain bleeds. Not one! They prepared us for the worst, we expected something, but God showed us if we ask of him he will answer. This is the BEST news! You had a good day. Feedings have moved up to 7mL, chest x-ray did not show anything abnormal, labs were good, and you are looking good.

Day 12
   Today was an extra special day. Not only did I get kangaroo time for 3 hours, but Dad sent me flowers at the hospital for our Anniversary. We've been married 4 years today. Seeing your name on the card was the sweetest. Holding you for so long put me on Cloud 9. I talked to you a lot today during our time about everyone that is praying for you. You have a huge fan club already. We talked dad a lot too. He really is the best thing that ever happened to me.
   You got your first taste of a pacifier today from Ms. Beth. You may love her now! You are up to 1lb 15oz in weight. Feedings are doing good, but we still have that heart murmur lingering. We are seeing it affect your lungs more. Praying really hard for God to close it up. These are obstacles, but overall you are doing great for a 24 weeker.  Your face is changing everyday. You look more and more like your Daddy. Maybe you'll have my eyes. ☺ See you bright and early buddy.

Day 13
  Well, you made today interesting. Just after I left this afternoon to go get food, you pulled your breathing tube out!! Yes, you at 14 days old. Mrs. Amanda was your nurse today and she got you all settled back in. You are tired from all the excitement, but resting well now. We gave you a pep talk and now your hands are in time-out under your swaddle. You are becoming more alert and I know you know our voices. Dr. Israel came back to check on you. Of course we know the heart murmur is still there, medicine will continue, but may have to look at surgery soon. This really scares us, but God is the great physician. I've been praying all day.

Sleep sweet. Grow big. Be brave. I love you.


 

Days 9-10

   I remember around this time, I started playing every scenerio in my mind for Berkley. The doctors had told us to plan on him not going home until my due date, July 20th... that was 101 days away.... 101! In that moment, the world stands still for a minute as you try to digest that. Still even now, that feels like a lifetime from today. Of course, if he does really well he may can go home earlier, but it won't be next month. All of our plans for him have changed. We will have to always be super careful with him around people that are sick, doctor appointments for years once he goes home, and knowing there could be other issues that pop up at any time. (Dont be surprised if you are rquired to wash your hands as soon as you walk in our home lol)  I wouldnt change any of this if it means having him here. I just pray he can grow up being a little boy - playing in sprinklers, playing football with his big cousin, Ty, chasing lightning bugs, learning his numbers and his ABCs, etc. Its the small things that as a parent you never think about not having. There are tons of "what if" questions for preemie parents. Berkley is doing great and there has been nothing mentioned of learning or physical disabilities, etc but these are things that cross my mind. It started getting scary around this time with his murmur and oxygen rates fluctuating. God has seen us through. Berkley started really changing day to day so I took lots of pictures. 

DAY 9

Dear Berkley, 

   YOU OPENED YOUR EYES TODAY!!! That one little peek made my heart explode. Your eyes are very sensitive to the light so you will squeeze them shut and open just for a second. It's amazing to watch you seeing light for the first time. Your feedings are going up today too! 

   Aunt Dewanna (your great aunt) sent me this scripture today. Deuteronomy 3:16. God's promise to us very similar to the verse Joshua 1:9 I gave to you in the beginning. Scripture discusses being strong, courageous, not afraid because God will never leave us. Always remember he is right there with you. Sarah Jo, your JuJu, told me the other day words that calmed me. She said, "God has got Berkley in His hands. So even though he doesn't get to feel his momma, I guarantee he feels his Heavenly Father." She is so right....God is there whispering in your ear, "it's okay." when I can not.

DAY 10

   I sat with you awhile this morning while you were all nestled in your Giraffe isolator.  I talked a lot to you and just watched you sleep. (I sneak peeks through your cover when I can.) You are starting to have facial expressions. You raise your eyebrows when you hear me talk, it makes me laugh. 

  Your heart murmur is still there. The doctors are still trying medicine and I am praying specifically for it to go away and your lungs to get stronger. It's going to take time, but God is working. They also did a head x-ray today to check for brain bleeds. We will get the results tomorrow. It will be rated level 1-4 and we are expecting something there just for your size and delivery. Saying a prayer that it is the lower end. 

   Saved the best for the end.... Dad got Kangaroo time today! He got to hold you for the first time. We sat and just loved on you for the longest. Dad talked to you and I listened  (and laughed a lot). Maybe you'll get his wit. We can't wait to take you home. We are going to make it through this. 

Sleep sweet. Grow big. Be brave. I love you. 

Eyes are open now!

Daddy's first hold

Day 1-5 in NICU

     The first 5 days in the Neonatatl Intensive Care Unit.... I wasn't ready for those. Not only had I just delivered my baby 16 weeks early, but now he was in the NICU also. Wes and I didn't know what to expect, didn't know what to do, didn't know what each minute held.  Wes had went upstairs to look at the NICU before my delivery and met a sweet couple that talked to him so he was a little more prepared than I was. I didn't have a clue as my nurse wheeled me to see him. Coming into the unit, you are taken back at all the babies and machines. It is one big room with small walls separating the babies. Each baby has has their bed, tons of monitors, and whatever equipment they may need to help with oxygen, feedings, fluids, etc.  At the time of Berkley's arrival, there were 67 babies. SIXTY SEVEN families and babies struggling, asking questions, scared, anxious, tears flowing, and on their knees praying. The NICU has stayed on the sixty range since we've been here. My nurse wheeled me around to what we call Suite 30 where Berkley was. I remember being flooded by emotions and lots of tears. I couldn't believe he was here. There were so many wires and tubes connected to him. He was in an isolator which I'd call an incubator to describe better. He was completely covered with two holes on each side where I could put my hands in. Just my hands. I couldn't pick him up, couldn't hold him close and tell him everything is going to be okay, couldn't hold him and look at every detail of his face. In this moment, I remember feeling overwhelmed, a pain I hqd never felt before, a deep longing to be closer to him, but also very thankful for being able to see my precious boy there breathing. Our miracle. At this time, his nurse started to explain everything that was going on. I remember Mrs, Angelia telling me her name and she said, "I'll be taking care of your baby today".  I got lost in those words, realizing that I would not be the one taking care of him around the clock. A nurse would be, very capable of course, but not me. I had waited so long to be a mother and I felt like it was being taken from me in that moment.  The emotions tied to this was so hard to get pass. I still struggle some days, but these nurses and doctors give an outpouring of love and care daily to our little ones. They are heaven sent. I thank God every night for them.  Berkley has a feeding tube and a breathing tube. There was a machine taking the majority of breaths for him. The doctors came over and I just heard voices. Wes and I didn't really retain a word they said that night or the next day. There was so much information given to us and I remember just wondering if he was going to be okay. I'd just stare at his little body and hold on to the little hand that barely wrapped halfway around my index finger. 

    Day 3 in the NICU, I started writing in Berkley's journal. I didn't want to forget any details. I also thought this would be good therapy for me and help me tell him his story as he gets older. Below are some of my words to him and some pictures from the first few days. His journey is going to be one that God uses. I just know it.

Day 3

Dear Berkley, 

You are 1lb, 14oz. 12 in long. You are as long as Daddy's foot. Your hand is as big as the tip of his index finger. Your eyes are still fused shut. You have your daddy's nose. You are showing us fight and the nurses are calling you "fiesty". You are so strong. You are so loved.

As we soak in every detail of you, we are trying to soak in all the information from the doctors. I know you are in the best hands here, but I feel helpless. That's the part that hurts the most as your mom. Not being able to hold you or love on you is the hardest thing I've ever done. I'm praying every minute of the day for you to grow, build strength, and for God to reveal his plan to us. Your arrival was unexpected to us, but I know it wasn't to God. God has a plan for you. He is in control. God commands us to be faithful. This holds true in the hardest of times. In a devotional book that Jessica gave to me on your birthday the scripture for today was Psalm 23:2 "The Lord is my Shepherd; I shall not want." The Lord is your Shepherd, Berkley. He will lead you. He will provide for your needs. He always has ours.

Day 4

My precious boy, you are doing so good. You are in what NICU calls the "honeymoon" stage because you haven't reacted fully to not being in my tummy. We are so happy with the progress you have made in just a few days. Your feedings are at 0.7mL and you are tolerating well. They also removed one of the cords that was hooked up through your belly button today called a UAC. You are on small baby guidelines so we are able to check your temperature, change your diaper, and gently touch you. There are certain times we can do this called care time. They are at 8am, 2pm, and 8pm. We are allowed back at any time, but must leave your insulator closed and covered unless it's during care time. Right now, we sit with you or are just about 50 steps away in the NICU lobby.

We got to hold your hands tonight. I know you could feel us there. We can't wait for you to open your eyes and start being more alert. You are making US stronger. We love you so much.

Day 5
Today I got to hold you in the palm of my hands inside the isolator. Our first touch. It was everything. Grammy always told me I'd understand her love for me once you were here. She was right, it's unexplainable. A love like no other. Always remember, I love you, Daddy loves you, and God loves you.

You went back on your vent from being on NIPPV for 18 hours. You are one strong boy. And hungry!!! They increased your feedings to 1mL today. The doctors heard a small heart murmur today that they will monitor for a few days. They assured us it's normal for premature babies to have this and it should close within a few days or they can give medicine to assist it.

Sleep sweet. Grow big. Be brave. I love you.

Berkley's Arrival

     Hey y'all! My first post... Never in a million years would I have thought I would do something like this. But God is telling me that sometimes we go through experiences so we can share our story for the greater good.  I've always thought that some things were better off left private than the whole world knowing. I felt very strong about that as I went through fertility treatments. (More on that later.) I even felt that way just a couple weeks ago when our son, Berkley, was born prematurely at 24 weeks, 2 days. Then after talking to a few moms and seeing different post/questions on social media, I realized there can never be enough support. Why hide Berkley's journey? So here it is. I hope that this is some small way will inspire you,  give you hope, or show you that sometimes faith in what we cannot see is all we have. I know in his 24 days of life, Berkley has taught me so much about love, hope, and faith. My husband, Wes, and I are blessed to be his parents. We have watched a miracle from day 1 fight to be here, fight to overcome statistics, fight to live. From this grew, Be Brave Berkley.

     Berkley Miller Stutts was born on Saturday, April 1, 2017 at 2:36 p.m., weighing in at 1lb 14oz and measuring 12 in long. I was 24 weeks, 2 days pregnant. I went to the doctor that Thursday morning because something just wasn't quite "right". {God working #1} I was sent to our local hospital and about two hours later found out I was dilated to 6cm. WHAT?!?!? Believe me, I had a panic attack right then and there. How could this happen? There were so many questions. The next two days are one big blur. I was started on magnesium and other medicines immediately at ECM as they tried to stop my contractions. I was given several shots, one of which was a steroid shot to help Berkley's lungs mature. (This was the biggest concern due to him being just 24 weeks.)  I was transferred to Huntsville Hospital's Women and Children's center by ambulance. We were so blessed to make it here as they are better equipped to handle premature babies with their Neonatal Intensive Care Unit (NICU).  {God working #2} The doctors and nurses  at Huntsville were great. They were able to get my contractions to slow down and we made it to Saturday before Berkley was delivered. (More on Delivery day later.) Due to the steroid shot needing 48 hours to be beneficial for his lungs, our immediate goal was to make it to 2:32p.m. Saturday before delivery. Berkley said hello to the world 4mins after our goal at at 2:36pm. {God working #3} Are you seeing the pattern? God always provides for us. It was not in our plan to deliver Berkley at 24weeks, but it was in God's. He lined up everything for us in order to have Berkley here with us. 

     Why did we not share a lot of information in the beginning and get upset when others did? When a doctor looks at you and tells you that you have to be realistic about delivery, that your son is 24 weeks old, and the statistics stack against him - you get scared, real scared. When you know there's a 50/50 chance that he may not make it through delivery or through that first day. There were a lot of tears and a lot of prayers. My son is a miracle and no matter what we face over the next few months, I'll never forget that whimper as he was laid on my chest. Almost 2lbs of a God given miracle. The nurses had prepared us that he would probably weigh a little over a pound, maybe 1.5 pounds  and that we would not hear him cry or anything at delivery due to his immature lungs. Well, there he was right before our eyes at almost 2lbs and giving me a small whimper to tell me he was going to make it. God, again, showing me not to lose my faith. He's in control. 

     I keep a journal that I write to Berkley in every day. I'm going to catch you up as this is day 23 of the NICU journey and tell you some things in between. I hope you gain some strength and hope from our journey. Joshua 1:9

To my precious son, Sleep sweet. Grow big. Be brave. I love you.