I feel like I should share a bit on our feelings on this weeks events.
This past Friday we got a call, one of those calls you dread from the NICU.
We were sleeping when the phone rang at 8. We had been up from 5am to 7 and were able to get both boys back to bed and by some miracle get back to sleep ourselves.
Kevin was closing that night at work so we had time…then the phone rang. First mine and it was charging in the living room and I didn‘t have time to get to it. I didn’t have to see the calledr ID to know that no sooner had my phone stopped ringing and Kevin’s started it was the NICU, and it wasn’t going to be good.
Kevin picked up his phone and I sat watching him, watching his breathing change to deep heavy breaths as he just kept repeating, ok…ok…ok….
I silently motioned our hand signal for these kinds of phone calls…since it is torture on the person not on the line and our house is too loud for speaker phone we give a thumbs up, thumbs to the side and a thumbs down.
Kevin gave me a side thumb…then a down.
The phone call seemed like it took forever. I thought it was going to be about his kidneys because he had an ultrasound done on them the day before in search of a cause for his high blood pressure and we were expecting the results that day.
Kevin got off the phone and told me Aiden had, had a ‘breathing event’. I said, “like what? Apnea? They wouldn’t call for apnea….what do you mean?”
He then said I should call to talk to the NP, that he is intubated again and could not breathe and they tried everything they could before intubating him but they had to to save his life. That his blood pressure bottomed out and he was gasping for air and they had no choice.
I called and they tried to explain to me what happened but they told me they couldn’t answer why because this came out of the blue.
Just the day before he was doing SO good. He was happy, awake and smiling. Five different people in the NICU told us how great he was doing. We left feeling more optimistic than we had in a long time.
We were in shock to get such a phone call after he had been doing so well.
They told me they started him on antibiotics, stopped his feeds, got xrays, blood cultures, tests and gases and a virus screen. But they had no idea what could have caused this.
As the morning went on the why got more elusive. His test were coming back good. His CBC was almost perfect.
While we were thankful that his tests were coming back clean, it got scarier and scarier because the more tests we ruled out the more that lead us to believe it was him and not a virus or infection which is much easier to treat.
If it were him this could happen again…and next time we could not be so lucky to have him in the NICU with a nurse standing next to him when it started.
Our family visited him all day long. He was sedated to be able to handle being intubated and we were told to take our time coming up there so we could have more answers.
That afternoon as we were getting ready to head out the door Kevin’s phone rang, he was in the middle of a dirty diaper and handed it off to me and that is when we found out what had happened.
They told me they knew what had happened and they were very upset. I was so scared to hear what they were going to tell me next because it was obvious this person had been crying.
They told me it was their fault and it was the medication he was put on for his high blood pressure, he was overdosed.
That they had prescribed him to get the dose in mgs not mls (1ml = 1000mgs). And he was given it in mls.
It caused the episode and that he was at a point where they knew he would be ok and not have any lasting effects.
We are lucky it was this drug because it is one of the few he has been on that would not kill him or cause lasting effects.
During the conversation I was in a state of shock. I felt pure anger and rage and at the same time pure relief and thankfulness.
The person who made the mistake loves Aiden. Honestly loves him. They have been with us since the beginning and have done so much good for him in the time he has been here. This person has been an advocate for us and him and always taken the time to guide us through these dark days.
We were also called by the director of the NICU to explain everything…just to make sure we knew he would be ok and they too wanted to apologize.
It was the first overdose since they had been director of the NICU.
As the day continued we remained in shock, in fact I am not sure it has worn off yet.
Seeing him made it hurt so much worse. When we went into his area the creak of the chair woke him up and he started silently whaling out in pain. Our voices startled him awake and any time he was awake he was miserable and fighting being intubated and crying. We couldn’t even touch him without sending him into a painful fit.
We left very sad. I cried the entire way home.
He was able to be extubated on Saturday and had a very rough day.
But Sunday he seemed much better. His big beautiful eyes looked so tired though. You could tell he was confused and worn out.
He just wanted held, and held he was. Even when we weren’t there nurses took time to hold him.
We have received a lot of opinions on what has happened.
But please remember that if you were in our shoes you wouldn’t be dialing your lawyer, you would be holding your baby. That you wouldn’t be plotting out suing the hospital when they saved your babies life, time after time. You would be asking what would be done to prevent this from happening again. You would be angry but so relieved your baby was ok.
So please understand why we right now are only focused on Aiden and getting him home.
We are protecting ourselves but at the same time Kevin and I are hanging by a thread every day.
Everyday it is hard to get out of bed. It is hard to walk in and out of those NICU doors without Aiden. Our hearts are heavy and just simple daily stresses weigh on us like anchors.
Being a NICU parent is impossibly hard. We fight being depressed and to be honest I am losing the battle. We fight to stay functional. We fight to not be scared every single second. We fight letting the negative take us over.
Right now we need to only focus on the positive. We need to look at this as while this was a horrible mistake they caught it and saved him and that he will be ok and this isn’t something that could happen again…like when we bring him home and we would be sleeping.
There won’t be a frantic emergency where we have to do CPR and call 911. This was acute and for that we are thankful.
We are all only human and every single one of us has made a mistake.
That is why when we ask people to pray we ask that they not only pray for Aiden but his doctors, nurses and surgeons.
Like I said we are still in shock and still processing everything but I wanted to let everyone in on our side of it. Plus the team taking care of him deserves so much credit, they have saved him, they are the reason he is still here, when he was given no chance to live they believed in him and didn’t give up.
The hardest part of being a NICU parent is having ZERO control over what happens with your child. You have to often ask if it is ok to even hold your child. We have to trust them. We don’t have a choice. That doesn’t mean it is a blind trust and that I am not researching every single thing I write down from rounds or the updates and asking a million questions a day and asking the same questions the next day with a different doctor. It means I have to trust that they are doing the best they can to save my son and give him a fighting chance at a happy, healthy and long life.
When you enter the NICU you enter a world you never thought you’d be apart of. You see things you can’t believe you weren’t aware of and wish you weren‘t. You can’t believe that while you went on happily with your life before that there have always been families and babies right where we are now. The NICU team becomes part of your family. They become mom’s to your babies. They often are shoulders to cry on, teachers, friends and counselors. They have seen me at my worst and picked me back up. We’ve spent holidays together, they’ve seen many of my babies firsts and tried their best to capture those moments for me, they’ve dedicated their lives to a world I can’t wait to get away from.
And I know that they are doing all they can and to me that is enough.
So while we thank everyone for their thoughts on what has happened please understand we won’t be sharing our decisions on how we proceed because that isn’t important. We felt it was important to share what caused him to stop breathing but it doesn’t matter what happens behind the scenes regarding this matter.
Aiden is alive and that is all that matters.
(Also to note, be it ‘behind the scenes’ I wanted to let everyone know the hospital in order to make sure this never happens again there has been a change in how prescriptions are placed and the ml button has been removed and you must write in if you want mls so no baby will be overdosed because of the same mistake again)