Noa Grace Rose

Oct 23rd 2012 - Dec 8th 2012

How can we measure or express to you the size of this void left in our hearts? Pain you can't imagine or prepare for, even with 20 weeks of pregnancy and 46 days of living with the reality and seriousness of how sick Noa really was.
We want so badly to hold her tightly to our chest so that she would disappear back into us, away from the relentless sound of the ventilator or tightening of her blood pressure cuff... or all the memories of the medical care that we tried to help her with. The storm has been subsided, and if she's not in Heaven yet, she's sailing there on calm seas in the arms of "The Captain of the Storm"- Jesus. The comfort we find in truly knowing and believing this bring a smile to our face, but it doesn't take the heartache away. Haunted by what could have been and what we hoped for.

                                                                                                                         - Our Lament 

Friday and Saturday

Dec 7th and 8th

leading up to Noa's death

On Friday morning when I went in to see Noa, she seemed the same. Justin and I both knew that the time was approaching when we would need to discuss the "next steps" with Noa's doctor in the event her kidney's didn't wake up. I sat down with the nurse before I even said hello to Noa and we did a little review of her night (meds, stats, behavior, etc). During our talk, Noa's doctor came in and sat down with me to chat about the plan for the day, but more importantly...what her thoughts were about the near future for N. 

The goal for the day was to go up on her fluids, continue to keep a higher blood pressure and give her a strong dose of Lasix. They also had started giving her an albuterol nebulizer to loosen some lung secretion, and made some adjustments to her ventilator (up on oxygen) to help with her lungs. There had been some swings in Noa's blood pressure which the nurse couldn't understand, but the doctor said could be because of any number of things, i.e. lack of kidney function, brain damage.

Other than the plan for the day, she wanted to have a talk with us about the time frame we were working with in Noa's care (and later I had the same discussion with Noa's nephrologist). She felt that by the end of the weekend, if we hadn't seen any change with the kidney function we needed to let the medical staff know what direction we wanted to head in.  There were 2 choices:

1) Discontinue intensive care.

2) Move towards surgery to repair Noa's CDH and continue with dialysis towards possible transplant. Although we haven't gone into detail on the blog about what dialysis would look like after CDH surgery (assuming she could even go through surgery), Justin and I felt that it wasn't a road that was recommended by the medical staff, nor any medical resource they had pulled from. There would be layers of complexities on top of what Noa would already be facing as a CDH child. The likelihood of 'quality of life', none the less survival was unheard of.

When I saw the nephrologist that morning, she told me that she felt Noa's kidney function would not return. And If by some chance, the kidneys did provide some urine, she felt they were damaged enough to need treatment at some point in her life. Either way, we asked Noa's doctor if we could get one more ultrasound of Noa's kidneys...just to confirm. 

Justin and I were heavy hearted all day on Friday. We didn't want to give up hope or believe what the doctors were saying, but it felt like without a miracle...Noa's road was narrowing. 

Justin was able to take his friends Dave and Ian to meet Noa on Friday night, to read scripture and pray for her- it was a very special time. 

When I went in to see Noa on Saturday morning, everything seemed to change. They had stopped giving Noa fluids because she wasn't tolerating it and in the end, the results of the ultrasound showed Noa's kidneys had shrunk significantly and the blood flow was also low- confirming failure. Dr Baxter felt that Noa was a little 'different' that day and at this point wasn't strong enough to make it through surgery. They both agreed that Noa's 'reserves' were running out.

They said they weren't in a hurry to get an answer from us, but they wanted to know if they should continue intensive care or decrease it. We left without giving them an answer...knowing that we had to actually sit down and have a discussion about Noa's future.

We came back to the RMH, put the kids down for naps, had our talk and prayed. We didn't want to make this type of decision...all the questions and 'ifs'. So many things to consider, so many unknowns. We wanted God to take this from us if he could. And even though we felt like cowards for feeling this way, we couldn't imagine living with any decision we had to make. But we knew.

We went to visit Noa that night, so grieved. Was our sadness a lack of faith? hope? She looked smaller than I had seen her in a while. They had taken alot of fluid off of her to get her comfortable. They were no longer pushing her kidneys since they expected no results...and discontinued the Lasix. We both spent time loving on her and then headed back to the Ronald McDonald House, so numb and sad. We sat in the entry area with the kids, just zoning out when I got a call to come back to the hospital right away....they had lost Noa's heart rate and couldn't get it back. 

When I rushed into the room holding Ruby in my arms...it was a scene I was familiar with. Instead of entering a dark and peaceful room...all the lights were bright, with nurses running around and medical supplies strewn about...but what was different was the nurse at Noa's side performing chest compressions. It was over. I knew it by looking at my baby's face. I told them to stop and let her go. We waited as they unhooked Noa from all her life support. Then they handed Noa to us... to hold our precious child for the first time. So wrong....

Our family had time alone with Noa and we will always treasure that. Oh God, we wanted her...we love her, we will always long for our daughter and look forward to finally hearing her voice and seeing her whole when we ourselves go to be with Jesus- our Wonderful Maker. We can't wait.

Thank you and bless you for loving our family and walking with us on this road. We didn't know what to expect or how it would turn out and we are honestly surprised. We had hope till the end. 

We've been wrapping up details here in Portland. I will donate the milk I've pumped, and we will work towards setteling Ruby and Emmaus back into a routine when we get  home. This is going to take some time...and we will probably always carry this hole in our hearts. Please keep praying for us and feel free to get in contact with us if you have any questions or just want to grieve with us....it helps.

Love Justin, Heidi, Ruby, Emmaus and Noa Rose.