Days 37 - 39

Day 37
Dear Berkley,
   Today, Dr. Buckley came and let us know that your incision is looking great. You are at 2lbs 13oz and holding strong.  Length is 14.25.  Your feeds are up to 23mL every 3 hours.  You did great during cares today and even had the heaviest diaper ever at 58! Overall a busy day, but uneventful.  I pray that you can rest more this week.  You have had a busy few weeks and need some sleep to help you grow!  You are moving in the right direction.

Day 38
Dear Berkley,
   Somedays I just ask why.  Today is one of those.  So much for uneventful days! Today was a DOOZY! We got a call in the middle of the night that you had spit up and was desating quite a bit. (Desating is when the saturation of oxygen in his blood goes below his parameters they have set.) You have never spit up before.  They believe maybe you had some aspiration. (Milk got into his lungs when he took a breath.) So they had a respiratory therapist doing some chest therapy at your 8am cares. With your desats, they want to try to break up any mucus you may have in your lung and help your right lung open back up.  It has collapsed from the air sacks being stuck together.  From what I understand, this could be from the mucus or from the milk aspiration.
  Mrs. Amanda had you today which we both loved.  She can always calm us both down and is great at explaining the information to Mom and Dad. Dr. Prada was here today as well. She ordered an xray on your lungs since your labs showed your carbon dioxide was high. Your tube placement was a little off so they moved your tube to 6.8.  (It has been at 7.5 since the beginning.) Your oxygen levels were the highest they have been at 50-55. I sat with you awhile trying to comfort you and to help with desats. You calmed down and got to about 46-48 and then the tech showed to give you an ultrasound that Dr. Buckley ordered. (More on that in a bit.) Shortly, after the ultrasound we found out you needed a blood transfusion. I am trying hard to leave this all at God's feet.  But I am so scared and worried.  You looked uncomfortable today. I felt overwhelmed and I know you had to be as well.  You were not a happy camper! Your vent settings - oxygen levels, rate, and pressure - all were higher throughout the day. Dr. Prada sat with us and explained a lot about what was happening with your lungs. They are going to order some more labs and a trachea culture to check for an infection or bacteria. I asked for special prayer request for you tonight.
  Back to Dr. Buckley.  He came in this morning and ordered an ultrasound because your leg looked more swollen than it did yesterday.  After reviewing the ultrasound, he is going to do surgery again tomorrow. He believes you have some more infection in your leg that has built up again toward the bottom of your femur. He will have to do a second incision. I know you are tired - tired of being poked, tired of IVs, and tired of surgeries.   You have had so many IVs lately, it's hard to find a vein now.  When they needed one to prep you for surgery - you had all sorts of attention from  Amanda, Beth K, Hannah M, and NPs Hannah and Emily to find a good vein. The day was super long. I pray this is all over soon for you. Even though you were exhausted, you peaked one little eye open tonight for us.  I know you are wore out. I wish I could take your place. I wish I could make it better.  Tomorrow will be better, sweet dreams.

Day 39
Dear Berkley,
  Another surgery has came and went.  We are so proud of you! You did so well! The surgery went very smooth. It took about an hour.  Dr. Buckley will be back to keep an eye on both incisions and your leg. He is a great doctor! This incision does not have a drain tube.  He packed gauze in the cut in order to soak up any infection that is left. You are resting well with your pain medicine.  Respiratory settings are still high at 45 rate and 26/9 pressure.  Hopefully we will know soon what is causing the new issue with your breathing.  They expect you to need blood later tonight and will do some more labs.
  Gammy brought us a mustard seed today.  Matthew 17:20 " I tell you the truth, if you had FAITH even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move.  Nothing would be impossible."  We can MOVE MOUNTAINS with faith, buddy!

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

Days 21 - 23

Day 21

Dear Berkley,
   You are still recovering from surgery and feeling some discomfort. You were really alert this morning as we sat with you. They started your food back and your swelling is going down. You are 2lbs 4 oz now, but some of that is fluid weight. Dad and I got to give you a wipe down bath tonight and you loved it. (Dont worry we got tons of pictures and a video!) We read to you tonight and overall this was one of the best days for us. God is hearing your name over and over. I know he is working on healing your body and helping you grow.
   The last few days have scared us, but you are showing us you can jump over all these hurdles that are put in front of you.  We love you so much! I'm sure some of the videos from the NICU are going to make you laugh when you're older. We already have "Berkley" voices that we use and we laugh at each other.

Day 22

Dear Berkley,
  I have been praying specifically for your lungs. Especially now after surgery, you should start making some movement with the vent. The nurses are watching your settings as well and changing when they can. Short term goal is to get you off the vent. The more your lungs mature, the closer we are to going home. We have a long road and when I think about it July is forever away. Almost so far it hurts. We will have so much catching up to do. We may never put you down once we get home. I know Dad will be trying to get you from me. He loves you so much. One day, we will get to sit down and have a long talk about your Daddy. I hope you grow up to be just like him. He loves us so much. He is my rock. He is so strong, loving, grounded, supportive, a great hugger and even better at making me laugh, and is helping me stay sane and hopeful during this time. Your old man is something pretty special. He will always be there for you, always. Until tomorrow, I love you, Daddy loves you, and God loves you.

Day 23

Dear Berkley,
   Today your feedings increased to 9mL and they are weening you down from your pain meds. Your swelling is a lot better and you are more alert. Your Oxygen is now at 40 so you are making progress. I tell you everyday how proud we are of you.
   You are a gift from God that we will never take for granted. We will enjoy every minute with you. I promise to always cherish even the small moments - to be the best mother I can be - to encourage you to follow your dreams - to let you be adventurous - to let you see the world through your own eyes - to always remember what we've been through - to remind you how strong and brave you are - to tell you "I love you" a million times a day - to show you are loved - to let you grow, but to remind you will always be my baby - to share the stories of the NICU with you and others so you know where it all started and who we are so thankful for - to tell you how happy you made us from the very beginning - and to always Thank God for giving us our once in a lifetime Miracle, You.

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

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.