One Year - Saying Goodbye

How could it be a year that I last held you in my arms, taking your last breath, your heart taking it's last beat?

How can it be that a year ago we took you off the machines?  We told you it was okay to go, we told you that you were going to a better place, that we would be okay. 

How can it be that inside I screamed that I wanted you back when just hours earlier I told you it was okay to go? 

I'll never forget those moments.  The moment I walked in from the parent room to see them performing CPR on my beautiful boy.  The moment I called Brian to hurry to the hospital.  The moment Brian walked in and shortly after they had to perform CPR again and we had to tell them to save you, to bring you back.  The third time when they told us your organs were shutting down.  CPR was only bringing back your heartbeat, it wasn't bringing YOU back.  The moment that third time we told them to stop CPR, to take you off the machines, to let you die in our arms.  The sounds of your daddy sobbing like I've never heard before.  A pain so raw coming from his heart that I will never forget the sound, never be able to .  And them telling us you were gone, 4:01am on 2/2/2016, you were pronounced dead, in my arms.

So raw.  So empty.  Our lives forever changed.

So many people tell me I am strong, I am brave.  BUT I don't feel strong.  I don't feel brave.  A part of me is dying on the inside.  A part of me died with you, Jace.  Even when I am smiling and appear happy there is always a hurt that I hide.  I do experience happiness, joy, love etc...  But along with those moments the hurt does not go away, the missing piece of my heart is ALWAYS missing.

The last year has also taught me so much.  I have been to the bottom.  It isn't possible to go any further down.  I lost my son.  There is no hurt that can compare to that.  This last year I've done my best to dig myself out of that bottom, to walk up this long winding road.  There has been some success in climbing and there have been many moments where I slide back down.  But, this year has brought with it tears and smiles, heartache and joy, sorrow and comfort, pain and hope. 

The pain from losing Jace is indescribable.  The joy in watching Eliana thrive is a miracle.  The happiness that is Kiera is pure joy to my life.  And the growth and energy, courage and strength that is Tey reminds me of what is possible and what is great in life.

So, I am dealing with the pain.  I can't say it's gotten better, I don't think it ever will.  But I am dealing because I get up every day, I face the day and I make it through.  It's too hard to express how very much I miss Jace.  But, I am walking this road, going uphill some days and down other.  Knowing I won't reach the top until I am reunited with Jace again one day.  But also knowing, he IS living on in my heart and I walk this road alongside him, with him and that will never change.

https://youtu.be/w4YVuQr_njs

https://youtu.be/any5qq6jAio

 

 

This time last year

This time last year I was in the NICU around 8 or 9am.  This was an earlier start for me because of always needing to make arrangements for Kiera and Tey (mostly Kiera).  Brian's dad and step-mom, Jack and Janet, were here during this time, which I don't see as a coincidence.  It was fate they were there staying at our house, helping us out.  When we got that call we were able to get out of the house ASAP.

The NICU had called Brian's cell around 6am that morning to say they had to stop Jace's blood transfusion because Jace had become very sick.  They had to put him on the ventilator.  Brian reminded me this morning, when they called, I said "I knew this was going to happen".  I remember Dr. Pane telling me of the risks of blood transfusions for premature infants at Jace's age (he was 3 weeks old), one of them being NEC.  At the time I made sure not to forget that she had mentioned, NEC, I kept that in the back of my mind, but I had no idea what it was.

Brian went to work that morning, we had no idea at this point where we were headed.  I went to the hospital to see Jace and he looked sick.  He looked very very sick.  His coloring wasn't right and he was lethargic.  They had started antibiotics at this point.  Once I saw him and how sick he was I called Brian and he headed right up.  I think we were both in shock at this point, Jace had never looked this way before.  He went through his ups and downs but his downs were never like this.

So began the beginning of the worst 24 hours of our lives.  They began doing xrays on Jace thinking this could be NEC.  It was determined to be medical NEC at this point (no perforation in his intestines).  They repeated xrays every couple to a few hours.

Dr. Helou was on at this time and he was the doctor in the NICU that we both felt very connected to.  We trusted him with all that we had.  Even though he was the one who gave us the majority of the bad news when it came to Eliana, there was something about him that can't be explained. He cared with his whole heart, he loved our babies and loved us.  He would check on them even when he wasn't on service.  He is a doctor, compassion, trust, loyalty, strength and so much more rolled up in one amazing person. 

They had called in a pediatric surgeon from Johns Hopkins, Dr. Lukish, for a consultation and he was heading to the NICU to look at Jace and review his xrays.  It was also confirmed at this point that Jace's PDA (Patent Ductus Arteriosus) had opened back up - this was caused from the NEC.

I believe it was around 2 and I went into another room to pump.  I knew Dr. Lukish was on his way.  While I was in the room he arrived and had started talking to Brian and Dr. Helou and at that point Julie (one of Jace and Eliana's nurses and someone who is a great friend to us now) came to get me from pumping, knowing I needed to be in the room to talk to Dr. Lukish.  Why?  Because the last xray showed Jace's intestines had perforated and emergency surgery was needed.  Dr. Lukish explained to us what would happen but also that some of this was exploratory because they didn't know what he was going to find once he opened Jace up.  He also confirmed that once Jace was ready for his reversal surgery (ostomy reversal) he would fix his PDA.  I cried.  I immediately cried.  How could our three week old baby go through a surgery? 

Dr. Lukish is the best.  He is a truly gifted surgeon and we knew that Jace was in the best hands he could be in.  We knew this first from Dr. Helou - if Dr. Helou had faith in him, knew he was the best, we knew we could.  We had a chaplain come up before his surgery to pray with us and Jace.  Chaplain Lisa Fischer who will always hold a place in my heart.  They took Jace back for his surgery and Brian and I waited.

We were standing at the NICU doors when he came back from surgery.  Dr. Lukish came right to our side and said the surgery went really really well.  Less was perforated than he thought would be and the surgery was successful.  He pulled the intestines through (ostomy) and reminded us the next 24-48 hours are extremely critical. 

They moved Jace back to room 9 at this point (this is the room where Eliana started off and eventually they were moved to the same room to be together - room 11).  Once they had him situated, Brian and I were able to go see him.  He was still out of it from the medication and all that his little body just went through.  There were two nurses taking care of him because of all of the different meds he would need during this critical time.  We stayed with him for a while.  Brian went home to be with Kiera and be there for her.  My plan was to stay in the hospital that night, in one of the parent rooms.  I took some pictures of Jace and some video.  I prayed.  Finally around midnight, Dr. Goddard suggested I go get some sleep.  I said goodnight to Jace and stopped by to say goodnight to Eliana and went to the room.  Brian and I skyped then, never knowing or thinking the worst could happen.