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Monday, December 10, 2012

  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 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 helps.

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

Friday, December 7, 2012

Dec 5th & 6th

Beautiful Noa
The circuit change went very smooth with no issues at all. Justin and I were both able to be there (thanks to a lovely nurse who volunteered to watch the kids). The whole process was more formal than any previous time (we learned our lesson!) and it paid off. I think  I was able to pick up on everyones nervous 'twitches' more than ever before as well! We were all rooting and praying for no problems, and in the end, there was a collective sigh...and on we go.

I was able to hold Noa's little hand during the circuit change (and I am thankful for the philosophy of modern medicine that allows and values that connection between family members). I was studying her face during the hook up of the new machine and looking for signs of distress or discomfort. And more than once when I was watching her, I'd get this image of her peacefully sleeping in Jesus' arms in a boat on a stormy sea. Just like him, she was undisturbed by the threatening storm (see last blog entry). I think I will try and see myself there in his arms too. 

Noa's primary doctor and cardiologist decided that it might be helpful to try a new med to increase her cardiac output and hopefully improve the blood flow to her kidneys. It seems that its been helping. The other important factor is having enough fluid in her inner vascular system that wants to go through her kidneys. So, the plan is to get her 'fluid positive' (and see her get swollen again), and wait till the kidneys kick in! When I went to see her this morning, that plan was underway.
The tangle of meds!

Noa's doctor (and the nephrologist) feel like we should see something within the next 4-5 days if we are going to. After that, we will begin discussing the next plan, assuming that her kidneys are in a state of failure. It seems that time lines can be flexed a little, depending on what is happening with Noa. But if all the circumstances are optimized for her to make pee but doesn't, then there has to be an end point somewhere.

The preliminary results on Noa's blood culture has come back negative for an infection...whew! And her doctor has continued to wean her off steroids as well as remove her from phenobarbital (a sedative). That means they will be adjusting her other sedation for the next day or so. Noa is back down to 25 parts oxygen on the vent (21 is 'room air'), and is down on the dopamine.

Her stats look good and she has had a couple good days of being cared for by the nursing/medical staff. This morning the surgery team came in and put some extra bandaging on Noa's neck where the ECMO cannula were. The sutures were starting to open up due to her skin swelling with the edema. They said it was 'ugly', but it would heal fine.

Some Encouragement

During all of this, there has been some incredibly loving nurses that have made an effort to bring in the nurturing part of parenting that I've missed out on since Noa's been born. Last week, one nurse had the insight to give me some alone time with her. I had never been alone with Noa since she's been born, and I didn't realize I missed it until I got it. They were right outside the door, but it was still nice to have a tiny bit of that freely talk to her. Another nurse last night asked for my 'help' in inspecting Noa's back for any breakdown in the skin. So she tilted Noa on her side and I got to see her back...rub it a little. That was nice too. 

We have been feeling 'washed over' by lots of generously loving people. Here are a few examples...

~ A man we've never met decided to generously make t-shirts and sweatshirts to raise prayer and support for Noa and to help us financially with the medical bills that are already coming in. He has also displayed God's fatherly heart by rallying others to be aware of and pray for Noa.

~ We have become friends with some of the medical staff that are rooting for Noa and our family. They have offered love and assistance to us far beyond their 'jobs', and have connected us with other families with CDH babies.

~ Our friends and family have continued to care for us though letters and cards, financial support, texts, emails and phone calls...always asking what they can do. Thank you for your endurance!

~ And so many of you that we've never met have donated money on paypal, encouraged us with comments on the blog, prayed and have supported those who support us! Thank you. We love hearing stories about people praying for Noa.

~ Lastly, just folks we meet when we are out and about have been openly kind and loving. Justin and I were at a park with the kids and met a nanny that we shared nothing with except where we were staying, and she offered to babysit for us so we could have a date. Another couple we briefly met at a pizza/pub we like (it has a great kids play area too), bought us a gift card after they discovered a little about Noa

There are so many ways God is showing his support and love to us and it's been unconditional. 
Thank you so much

My goodness those kids are CUTE!!!

Wednesday, December 5, 2012

Monday - Tuesday
Dec 3rd & 4th
Captain of the Storm

I have a little notebook that has become infamous. I take my 'medical notes' in it everyday. Six weeks ago when we would go for rounds on the PICU floor, I would have it, my pen and a cup of coffee (and I remember looking down at my post-pregnant belly...crazy). Anyways, I refer to that book for my posts and when I checked for the 2nd and was empty. But I did take notes for the 4th! So here it goes from memory.

I think we've been feeling a little in limbo while we wait for the circuit change. On Saturday I got a call from the nephrologist (dialysis doctor) that she wanted to wait for the change until the filter on the machine just clotted on its own. There is a plan to cap off Noa's catheters and then assemble the right team to do the change so as to be as prepared as possible for any 'hiccups'. All the right people and equipment on hand. As of tonight it is still running. It is on day 9. The protocol is to change it every 3 days. So, tomorrow at 12, there is a planned change of the circuit. 

I was a little discouraged when I went to see Noa on Sunday. It seemed, in the short time I was there, her heart rate kept dropping and then she would act uncomfortable (throw up her little fists and flex her feet). The nurse would suction out her ET (breathing tube) and her numbers would go back up...but it seemed to happen more than normal. When I called in the evening they had to give her platelets (blood) which helps increase her inner vascular pressure and thus increases her blood pressure. When that didn't help, they put her back on dopamine to help her out.

So when I went to see her this morning (Tues), I was sad to see she didn't look as good; her catheter sight was bleeding. (they think it's because of being positioned for the morning X-ray), her feet were swollen and chilly and I learned that she was back on dopamine because her heart rate had continues to stay low through the night. 

They told me that our doctor had unexpectedly been called away for a family need, so we would have the same doctor that saw Noa on 2 days during the Thanksgiving holiday. When he came in, I learned that over night they started Noa on antibiotics. He felt that there were enough indicators that pointed towards an infection (and to play it safe with all of her wounds/IVS). Not only had her blood pressure been low, but her gases were not good, her blood sugar was up, the X-ray of her lungs looked like they were 'wetter' from the previous pictures and she wasn't 'behaving' like herself. So- she is on 2 antibiotics to help fight anything she might have. They took a blood culture around 4pm on Tuesday and should have results back around the same time on Friday (although they have a preliminary finding report after 24 hrs). So we will wait and see. He thought a slight possibility of pneumonia...but doesn't know.

Obviously I was discouraged. We want to see her improving, and when there are any challenges that hit her, Justin and I both get concerned that she's going to run out of 'oomf' and is getting tired. I get worried that the doctors will interpret any bumps as a road sign that points down the path of 'not responding despite intensive care' and will start to say what I don't want to hear, "...she's not trending in the right direction..."

We probably struggle with feeling tired and wonder how she feels. I think I became more concerned about a timeline after our last Care Conference. I don't think any of the doctors were suggesting that we put an end to Noa's care, but I definitely heard more talk about considering it in light of the multi-layered care she's receiving. And particularly if her kidneys don't wake up. It's been a pretty torturous process wondering if we're pushing her or if the fight is still in her. Its hard to tell sometimes without any experience seeing a baby go through this. Honestly, its heart breaking to see her and wonder if she's suffering. But, the nurses assure us they don't feel like she is, although she is definitely uncomfortable. I have been encouraged by the nurses more than once that they aren't seeing the signs of a baby that is declining or giving up. And they often suggest that she's strong and feisty and has the will to live.

Last night I re-read a story to Ruby out of the "Jesus Storybook Bible" that I read over and over to her when I was pregnant with Noa. Its called 'The Captain of the Storm'. 
Its the story in the gospels when Jesus climbs in a boat with his buddies (the disciples) after a long day of loving and caring for others (ministry). He falls asleep while they are crossing this lake and in the meantime a HUGE storm erupts and freaks out these men that are experienced boatmen/fishermen. Jesus sleeps. Finally they wake him up and yell, "We're going to drown!" So Jesus commands the wind and waves to stop and they do. Then he says to his friends/disciples, "Where is your faith?" And they were in awe that he had command of even nature. 

I couldn't get the words out when I was reading it. Ruby gave me kisses and hugs because I was crying...only the surface of the sea of sadness in me. And honestly, that is me, saying to Jesus...Wake up!!!!! The storm is too big, its going to take me over. 
I know he CAN heal Noa- he's God! But I don't know if he's going to and I confess, I am afraid. Thank you for praying for us and our faith. We love reading the comments and look forward to it. I love seeing your faith-we are blessed by you.

Monday, December 3, 2012

Saturday- Dec 1st / Sunday- Dec 2nd

Like you guys, I'm getting all my updates and info through Heidi. It's been three days now since I've seen Noa. I picked up the cold that the kids have... Last thing that I want to do is go spreading my virus to Noa or the NICU. I've been spending a lot of time with Ruby and Emmaus and I picked up a copy of The Hobbit to read before the movie comes out. It's been like catching up with an old friend.

So we didn't see much of a change with Noa today or yesterday. Still waiting on those kidneys to kick in. Dr's are hoping that this dialysis circuit makes it through tonight. They've been hoping to push Noa's kidneys with the circuit running for 7 days. Lately we've been running into problem with the circuits lasting for 3-4 days. She's shown, more often then not, that she doesn't like the change and her condition drops to a point that she needs intervention. (She hasn't fully "coded", where her heart has stopped and needed resuscitation, but it's still scary). These episodes tend to set Noa back a couple days... By the time she regains the ground that she's lost, it's time to change the circuit again... It's kind of a catch 22, It's care that her body needs, till her kidneys kick in, but because of her frailty, it's also setting her back. It's also not like her body is getting stronger and adjusting to each episode, they're more likely doing damage. Another scheduled circuit change for tomorrow (Monday). Pray for pee or a smooth circuit change...

One thing that Heidi and I have talked about is that we're living so much in the moment, that it's hard to have time to process even what happened the day before. We've asked the Dr's and nurses to "tell us like it is", we don't want to be surprised by anything or caught unaware. The care conference we had on Wednesday was really heavy. Right in front of us on a white board were the things that Noa's facing right now. Noa's going to have a difficult road ahead no matter what, but the scenarios are worse if her kidneys don't start functioning.

It's hard not to thick about the toll that all of these treatments are having on her... even worse, what they've already done to her. She's overcome a lot so far and proven that she's a fighter. In terms of the marathon that we are in and where I stand:
 I'm at the point in the race where doubt starts to creep in about weather I went out to fast and strong at the start, wondering if I'm going to be able to make it to the end. I start letting the overwhelming task (big picture) at hand defeat me. I've done plenty of races to know that if I keep my feet moving forward, I'll get my second wind. There's been some nights that I left the room crying because it's hard to see her that way. We still haven't heard her voice, haven't held her. It's only been recently that Heidi's had time alone with her, where the nurses left the room for privacy. I'm not going to lie, It's hard to have hope some days... To think of all she's been through, is going through now, and will go through (just to survive)... when side effect like deafness or delayed development are welcomed rather than possible organ transplant or neurological damage. If you noticed that I didn't put death in that list of side effects, it's because I don't know where it fits in. Heidi and I don't need Noa in our lives for us. We want her to have a good quality of life that is not for our selfish benefit. We can't discount all she's overcome and
the improvements we've seen in her heart and lungs. Only God knows how much more she can take.

I hope this didn't bum anybody out. It was just my attempt to process the last few days of thinking and whats weighing heavy on my heart. It's hard to know what to share or what's too personal. I know that a lot of you are in this with us... We ask you to pray for all of us, (and even ask you to do a potty dance to encourage her kidneys). This is all stuff we need prayer and encouragement for. Please leave comments for us if you have questions, encouragements or even prayers for us.

Thanks for checking in,