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 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.

Shanon's House

A post from Instagram: "The Lord knew His plan from the beginning. He has blessed us with our miracle and also with a place to stay right by the hospital. We have had numerous people ask us about where we were staying and how to help so I wanted to show you God's plan. We are staying at the Shanon House that the Mayfair Church of Christ runs here in Huntsville for families who have loved ones in the hospital for an extended period. A room opened just a few days after I was discharged from the hospital. The Johnsons that help operate the home have been a blessing as well. We are just a short walk from Berkley when we are not at the hospital. God is good.  Thank yoi for your continued prayers."

Its so hard leaving your sick baby, but add an hour and half drive and it makes it that much harder. Knowing you are so far away if you get that phone call to come to the hospital. But now I didn't have to worry about being so far.  Now we are literally across the street from where he is. If you looked out the window close to his Suite 30, you could see the window to our bedroom. God is good! He reminded me in this moment that he will always provide. We just have to ask him and wait.

The Johnson's, Johnny and Christie, are amazing folks. Truly a blessing to everyone that comes in contact with them. Christians who pray for you and your baby as they live out God's plan. They attend Mayfair Church of Christ here in Huntsville. The church funds this home that was started by Shanon's parents. A huge blessing to over 600 families in the years they have been here. Below is a link to a website. Please take a few minutes to read Shanon's story. Also, will you pray for the church, the Johnsons, and the house?

http://shanonshouse.org/SHANONS_HOUSE/Welcome.html

Our view from the backyard: