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 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 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. 

Day 30 - Day 33

Day 30
Dear Berkley,
  YOU ARE A MONTH OLD!!! We took lots of pictures today! :)
   Your antibotics for your infection are still going. The lab results came back today and docs should be able to narrow down the best treatment now. After just a day on the antibotics, your leg swelling is going down some. You've had a full day with docs and nurses in and out of your nest. Praying you get some rest tonight. I pray for you multiple times throughout the day. I know God hears us. You are our world.

Day 31
Dear Berkley,
   Another eventful day. At 8am cares, your nurse, Beth, and I talked about your leg looking worse. The docs called Dr. Buckley and he recommended surgery for tomorrow. But then after looking at an ultrasound, he recommended that we go ahead today with surgery plus your leg is swelling more hour by hour. He will go in and drain the abscesses on your femur bone.
   I am so scared. This will be surgery #2 in just 12 days for you. Praying fiercely.  Dad will be here in a few minutes then we will go upstairs to talk to the OR team.
 PM update - You are such a trooper! You did great during surgery. It took about 30-45mins. Dr. Buckley told us in comparison to our bodies the pus he drained would've been about a cup size! No wonder your poor leg was so swollen! God took care of you as they sedated you and guided the doctor hands. We will have regular check-ups with Dr. Buckley to monitor your growth. Your leg is wrapped in gauze and still pretty swollen.
 

Day 32
Dear Berkley,
   You are resting well after the surgery. Your feedings were started back at 3mL every 3 hours. You received some blood today as well. Your color is looking so much better. You woke up some during 8pm cares and watched Dad and me. Praying for lots of rest so you can recover quickly from surgery.

Day 33
Dear Berkley,
  Dr. Buckley came by to look at your leg. He thinks everything is looking good and removed your drain tube. Your incision is open so we will wait on it to heal from the inside out. You had to receive some sedation medicine today as you started waking up. You are tolerating the pain, but we can tell you are uncomfortable. You were waking up and being your fiesty self.
   As we coast over the 30day mark in the NICU, it gets harder and harder to leave you every night. Especially when you are awake and more alert. I am ready for us to have you home. Right now, I feel like we share you with everyone. I can't wait for the day it is just you, me, and Dad. I know this journey is bringing us closer as a family, closer to each other and closer to God. We've waited so long to be parents. I never thought the day would come. I lost my faith a lot, but God taught me to remain faithful and to always know its HIS plan, not ours. Happy does not describe what I felt when I found out I was pregnant. You bring me so much happiness (dad too!). You were the worth the wait. Now, there is just a little more waiting in order for us to have you home. You are worth it all.

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

 

Days 27 - 29

Day 27
Dear Berkley,
   Today you are 28 days old!!! Whoooo hooo, another milestone! You are doing great and will come off small baby guidelines in the next day or two which means we get care time every 3 hours instead of 6. Your feedings are up to 20mL and you are at 2lbs 5oz. Your leg is still very swollen, but they are giving you some meds to help with fluid and keeping it elevated.
  The hospital is starting to wear me down, but I'm not leaving your side. I tell you all throughout the day that I'm here and I hope you know it and can feel our love. I love you precious.

Day 28
Dear Berkley,
   You came off small baby guidelines today! They are going to keep your care time every 6 hours since you seem a little more fussy about that leg and jusy really do not want anyone messing with you right now. They are doing another xray a little higher on your leg today as your swelling has moved into your bottom. Praying everyday for God to give them an answer to whats causing the swelling. We are getting more worried about it.

Day 29
Dear Berkley,
  Dad and I went home yesterday to check on your fur-siblings and take care of a few things. While we were there, we got a call that a doctor was coming to drain some fluid from your leg that has been swelling. We headed back to Huntsville to be there with you.  We know now the results from the fluid. It is an infection. It can be lots of different things so we are waiting on further results from thr lab with specifics. The doctors started you on 3 antibotics to cover a broad spectrum.
   We are frustrated that this wasn't found sooner. We have lots of questions and are trying not to get ahead of ourselves. Praying for quick results from the lab, quick treatment, and guidance for the doctors.
   I did get to kangaroo with you today. Always love this. It makes us all feel better.

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

 

Surgery Days are Tough

   One of the hardest things as a NICU parent is watching your baby get stuck a million times. Surgery days are rough and most of the emotions come beforehand when the nursing staff is getting your little one ready. We had surgery #3 and the chaos of emotions is still there. You hurt for him. You want to take his place. You want to hold him. You want to comfort him. You want this all to be in the past, a distant memory. But the hike ahead is still a long one with some steep mountains to climb.
   Berkley had a total of atleast 6 IVs in just a few days, numerous heel pricks, and a PICC put in. (PICC is just a central line IV they can use so he isn't stuck repeatedly for more IVs). There comes a day when you know he is tired, just plain tired. Tired of needles, tired of everyone poking him, tired of surgeries, tired of lights and sounds, tired of xrays, and the list goes on. I feel like yesterday was his breaking point (Maybe because I feel close to mine as well.) Hopefully now, we are done with surgeries. But I said that before. Berkley at 40 days old has officially had as many surgeries as I have in 33 years. Yes, let that soak in. 40 days old....As hard as I pray there isn't anymore surgeries, I'm sure there is more to come.
   Surgeries weekly is emotionally and mentally draining us. We want to help him and we can't. The doctors, nurse practitioners, and nursing/respiratory staff are all amazing! (Seriously, angels here on earth taking care of tiny humans, taking care of our baby boy.) But the emotions of feeling helpless and scared do not go away.
   The silent walk behind the bed as they push him in the isolator down the hall speaks louder than words. Another surgery. The anesthesia tech watching his stats and squeezing what I would call a balloon mask to help him breathe. Walking and squeezing that balloon over and over with each step. (Its helping him breathe as he is unhooked from his vent.) That walk is the longest if you are the parent watching every squeeze. I hate this part. The replay of what just happened last week...going to get on the elevator, going down to the 1st floor, he will go left to the OR and we will go right to he lobby, and the anesthesia team will say 'we will take care of him'. As much as we trust them, we just feel scared, anxious, panic, and worry. We usually try to do something to keep our minds off of it while we wait. That hour seems like 5 hours. Impatiently waiting on the call to say surgery is done.
   The worst part is that after surgery is when I worry most. The series of questions that go through my mind are overwhelming. Will his vitals be ok? Will he be in pain? Will his blood pressure be stable? Will he need a blood transfusion? Will HE be okay? Will his oxygen rate need to go up? Will he be initiating breaths or letting the vent do it all? Will he sleep through the night and be stable or will we get numerous calls? Did this fix everything?
  I'll never be able to explain the full emotions in detail, but I do know this Mother's Day I will be hugging Berkley a little harder when I get to hold him. I never understood this kind of love until he came into this world. Everyday is scary... every single day I worry about him and what is going to happen that day. We know its a rollercoaster, but even knowing that you have to be hopeful. Hopeful that the bad days are behind you. Hopeful of the future. Hopeful that he will grow. Hopeful that he wil heal. Hopeful that the light at the end of the tunnel will soon turn on for you to see. Hopeful of some sort of normalcy. Hopeful of love overcoming all.

1 Corinthians 13:4-7

"Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrong doing, but rejoices with the truth. Love bears all things, believes all things, hopes all things,endures all things."

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 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

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