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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,

Friday, November 30, 2012

Thursday & Friday
Nov 29th & 30th

When I went to see Noa on Thursday, there was the tiniest bit of pee in her catheter! It wasn't anything official, but it was enough to lift my heaviness and give some hope. Medically, there are stages that define someone regaining kidney function...and this wouldn't even qualify as the first stage, but it was so good to see. I had been having such a hard time pushing past the intensity of this time line. Something has got to give soon and the pressure of that is so intense. So many variables. So we just decided too let go and live in the hope. We went to the toy store and bought Emmaus some cars and Ruby a set of bugs in resin, a couple videos and finished with ice cream topped with sprinkles. 
Celebrating the sprinkles!

I went to see her before bed, she looked great. Her bedside nurse propped her up on her side a bit. It was sweet because I don't think I'd ever seen the back of her head before! And its so nice to get her in different positions. They continue to elevate the leg with the dialysis catheter. It helps keep it from getting too swollen.

Other than that, Noa is continuing to improve and regain some ground after the circuit change on Monday. When I visited her this evening, they had her oxygen back to 'room air' settings and they had discontinued her dopamine (a blood pressure med). They have been trying to keep Noa 'fluid positive' on the dialysis machine (it is one component in challenging her kidneys to function), but today it appeared that her lungs had taken on some fluid as well, so they kept her 'even' today. There is a balance to trying to get her kidneys to function. They will allow her to become incredibly puffy and put on a lot of fluid, but not to the point of compromising her lungs. 


Today, her lungs had improved and the doctors agreed to allow a more 'positive' fluid level. When I left her this evening, there still had been no urine. But...they said it could take up to 2 weeks to see anything. I am getting use to seeing her swollen. Its pretty sad though. She hasn't opened her eyes in over a week. You can see the lids sort of move as if she would like to open them, but they are too swollen. I pray her vision is ok. I just read on a website that other babies her age are starting to focus further away and track an object across the room.

Noa has been doing very well in all other areas. Her gases continue to improve, and it seems like she tolerates her 'cares' (being suctioned, cleaned up, examined, etc) without needing any extra sedation. Today she is officially off of her antibiotics and she continues to be slowly weened off of her steroid. She is just finishing day 3 of blood thinners for the clot in her chest. They will continue with that for another 4 days. Noa also started on a little physical therapy today for her hands. Her thumbs tuck in her fist and she clenches it tight, so they put tiny splints on her hands to hold her thumb back. The therapist worked on opening her hand/straightening her fingers up a bit. This is just the beginning....her little body will need alot of assistance moving around when this is all done.

Although I hadn't heard it earlier in the day, the dialysis nurse told me she thought they were planning on doing a circuit (dialysis machine) change tomorrow (Saturday). Of coarse I knew the day was coming but I am nervous. My mind starts racing and I want to control things but can't. I suddenly loose confidence in all the staff because of the ongoing issues Noa encounters with each change and their inability to prevent it or even know why it happens exactly. Its like we're just crossing our fingers and hoping it goes smooth. 

If we really do have a circuit change tomorrow...I will be covered by God's feathers, tucked away under his wing.

Wednesday, November 28, 2012

Nov 28th
brackish waters

Brackish waters are when salt and fresh water mix. Even though you can still see through the water, it becomes incredibly blurry and your sight is impaired. You can often feel the temperature change as well as your body hits the different waters.

I feel a mix of feelings and thoughts today and over the last few days as Justin and I try and process some information that feels pretty heavy about the potential road ahead for Noa.

Although we aren't there yet- we feel its fair and loving to share with you a bit of what we're being told. It's so scary and sad, yet not time to give up hope either. But we wouldn't want anyone to be surprised at the reality of where we've come to. There are so many of you keeping up and praying and hoping for this precious baby.

Today we had a 'Care Conference' with all the doctors involved in Noa's care, as well as a few more trusted medical staff/friends that are advocates for Noa and support us as a family. We've had these meetings before and they are very helpful with getting everybody on the same page.

They reiterated in the meeting what Noa's doctors have been explaining to us the last few day...its imperative that Noa's kidneys begin to function and she generate some urine. Although she still needs surgery to repair her CDH, it is not the driving force of her care right now. 

As you've read the last couple of weeks, all the issues pertaining to her CDH have improved (heart, lungs, gases, weening off of meds). Most of her care (and emergent issues) have been based around the dialysis catheters, changing of the dialysis machine and ultimately her lack of urine.

Even if they were to repair her hernia, the likelihood of Noa being a candidate for long term dialysis (until she's large enough for a transplant around age 2) is slim considering the complexities of her issues. There are a couple varieties of dialysis, but as we walk down either road, there are multiple other obstacles and added risks and complications. No one has said its impossible or they aren't willing to try and explore those options. And as parents, we are seriously going to look at them. 

As of now, the coarse of action is to do everything possible to set her kidneys up for success...and then wait. The doctors have said they have seen kidneys 'wake up' and generate urine anywhere up to 2 weeks after being challenged to do so. Everyone is willing to wait and there is no rush to get her to surgery for the CDH. What is a concern and has a timeline is the dialysis machine itself (it needs to be replaces every 48-72 hours). We don't know how many more changes she can handle. Whether its the machine or doesn't have a history of going smoothly. Also, the dialysis catheter in her leg can only function for so we saw with her last one (clots). 

So we are in brackish water...mixing of two worlds.
We have every reason to hope that her kidneys will work and have the total joy of celebrating all she's come through to bring her to the place of even considering surgery! But, without those kidneys- the waters ahead are very blurred. 

We love and very much appreciate you.

Nov 27th

The night went smooth with Noa...and she looked peaceful when I saw her. I won't lie, it's discouraging that she's had a set back...but she always seems to recover. She has been called strong by more than one doctor.

The plan for Noa today was to get an ECHO of her upper chest area and see what her heart and lungs look like and at the same time they looked to see if she had a blood clot in the old catheter sight (which would explain why her head and upper body remain swollen even when the rest of her body drains).

The pediatric cardiologist thought her heart looked good. It was functioning well and it wasn't thickened due to all the work its been doing and meds she's received. Her lungs also looked well- the hypertension wasn't causing her lungs to push the blood away. That is very good news.

They did find a blood clot in her chest...which is not unusual with an ECMO patient and having the dialysis catheter in her chest as well. There doesn't appear to be a concern with it dislodging, but they don't want it to grow so they have started her on a blood thinner called Lovenox. This keeps it from growing and allows the body time to 'deal' with it. Lets pray it doesn't grow and her body gets past this quickly.

They were able to put a Foley catheter back in Noa as well. 
We continue to hope and pray that her kidneys begin to function. Like I told a friend of mine, I will just crumble in joy and grateful worship if it happens. 

Other than that....they are keeping an eye on her right is a little more swollen than the rest of her body. They think its because its not getting the same blood flow due to the dialysis catheter being in that leg. They are trying to slowly bring her vent settings down and still keeping a close eye on her gases since the episode yesterday. It doesn't appear that she's quite gotten back to where she was before. They have her back on dopamine (a heart med) that they had weened her off of...but are slowly decreasing the amount still. We'll let you know how it goes.

The other two beautiful babes are doing pretty good. They did end up getting a little cold...but it doesn't seem to effect them except when they go to bed at night. We've been keeping them huddled in the room or in the fresh air. Not worried about them and actually took them to the zoo with some friends. It was fun (and cold!) and so nice to do something fun with them.

Again...thank you for hanging in there with us. I have the sense that many of you feel like we do, that we really are in the midst of a marathon! I'll try and take my own advice when I say, lets go to God to be refreshed and encouraged.

Tuesday, November 27, 2012

Monday Supplement
Nov 26th

I am sorry that this is such a roller coaster. I enjoyed hearing how happy the last post made some of you feel- I felt it too! And I haven't lost hope, but even as I was writing it, Noa was at the hospital struggling very hard.

I guess after they changed from her old ventilator (VDR-what is it? click here) to the conventional one, her gases steadily declined, and so the plan was possibly to turn up the settings on the new one high or put her back on VDR, which aids her lungs more efficiently.

But the more jarring news was when the nurse called and told us that they had scheduled to change the dialysis circuit around 1pm but had encountered some problems. I guess, for some reason, the filter clotted on the circuit and it caused distress with Noa. Like last time, her heart rate and blood pressure dropped low enough for the doctor to intervene. They gave her 'volume' (which opens up and puts more pressure in her veins, causing the heart to work harder) but when that didn't work, they had to give her epinephrine again (adrenaline) to shock her heart back quicker.

They couldn't figure out why the circuit had reacted that way. When they tried it a second time, it did it again! This time they were able to stop it before it effected Noa. I made it to the hospital for the third attempt at 5:27, and it went smoothly. They aren't exactly sure if it was a filter problem or a catheter issue, but the doctors are right...Noa does not do well with all these dialysis machine changes, and her body can only tolerate so many.

I am sad and sorry that this happened. Noa is back on the old ventilator with high settings as well as dopamine (a drug for her heart) and when I left, her blood pressure was still low. They are waiting for her to slowly recover from this.

There are so many people pulling for her. Not only friends and family, but so many people who have only heard about well as many doctors and nurses and other staff that have had the opportunity to work with Noa. All of us are on this roller coaster- hoping and praying for her. I held her hand for awhile before coming back tonight. She was just still and sadly swollen (especially one of her eyes). I am sorry for her. 

Monday, November 26, 2012

Sunday & Monday
 Nov 25th & 26th

It ended up being a productive day for Noa...and I thought it was going to be quiet.

The biggest accomplishment was that Noa's catheter was removed from her chest! It had become an urgent concern because the sutures from the old ECMO cannula had opened a bit and were exposing the tubes from the catheter in her chest (using one of the same veins). Infection was a concern, as well as the swelling in her head and the line itself was a 'central' line to her heart. The surgeons were able to thread a new line into her leg by cutting it open so they could actually see it. Her numbers were stable through the procedure and all went well. It was a sigh of relief to get it out and so nice to see Noa without any 'hardware' in her upper neck/chest area.

Catheter in chest
No more catheter!
We have been going strong with the plan to give Noa the right amount of fluids, get her heart rate to the right spot and give her the diuretics needed to kick start her kidneys. They had an ultrasound to see if there was any urine in the bladder...but not yet.  Today (Monday) they had a look at her kidneys and they looked good. The blood flow to them looked normal adn healthy, so there's no reason to think they won't work. We will stay this coarse for a bit more...but not sure how long. We have a conference on Wednesday with all the doctors and we hope to get a better idea of a time frame for surgery and how/if that effects the kidney situation effects that. Everything else with Noa is moving towards fixing her hernia in surgery. 


Today (Monday) when I went to see Noa, they were prepping to replace her ET tube. She has had the same tube that she was intubated with when she was born, and she's outgrown it. So, they successfully replaced it today with a larger one. And when I went in to see her after the procedure....the room was silent (instead of the distinct sound of her old ventilator) because they also had switched her to a traditional ventilator!
Praise God! Its another step in the right direction. Even though the previous ventilator was good at treating her lungs initially, it's time for her to have more of a 'normal' in and out breathing motion and for her to practice breath.

That's it for now. I am so encouraged about Noa's kidneys and I have a lot of hope that they will start working again. I hadn't been feeling that way the last couple of days, but I turned a corner (thanks to prayer, the ultrasound and the encouragement of medical staff). We also are so grateful and excited that she has come off of some of her heart meds, changed ventilators and she continues to stay stable with her gases, lung and heart function. She is so strong... and beautiful.  

Up to no good!!! but soooo darling!
Our family has had some fun over the weekend as well. We were able to go to the Oregon Museum of Science and Industry (thanks for the passes Ronald McDonald House!!) and we also were treated to a wonderful lunch by a new dear friend at delicious bakery! 
Ruby relaxing at bakery

Saturday, November 24, 2012

Fri & Sat
Nov 23rd & 24th
Lets Hope and Pray

Although Saturday isn't over yet...I thought I would catch everyone up on the latest news. 

Noa has been stable the last few days and has moved forward in some areas. Its encouraging that there hasn't been any major issues with her progress, but that can be deceiving because what we have been dealing with are other medical issues that have been unavoidable due to the fact that intervention (medical care) is needed. It (medical care) has been amazing and helpful, but can be complicated, and in itself cause complications. An example would be the dialysis catheter clogging and sending Noa into a critical place on Wednesday. 

One goal that Noa's doctors have had is removing extra fluid Noa has had in her system. And its been accomplished. Her body and extremities are closer to normal size, but one compication is that her head is still holding fluid. They aren't sure if its just due to 'slow drainage' because the ECMO cannula were in place on that side or if its the catheters that are still in place in her chest, or if she has a clot in her arteries that is slowing it down. They are hoping to remove the catheter on Monday and do an ECHO to see what we might be dealing with.

Our biggest concern right now is her kidneys. We have all been hopeful that dialysis was a means to an end and she would eventually urinate on her own (which she's done fine when the circumstances are right). But she hasn't urinated in a while and its a problem as we move closer to considering surgery for her CDH. 

Its incredibly complicated to treat a baby her size with chronic kidney issues post surgery. If it were only kidney issues, treatment and transplant (eventually) would be not as complicated, but because of the complexity of Noa's situation (her heart/lung issues, vulnerability due to CDH surgery and healing needed, etc) it becomes more serious (if even feasible). They are exploring the options-but they are slim.


Over the next couple of days they are focusing on getting Noa's kidneys to work. They are working on creating the optimal scenario for her (getting her fluids to the right level, her blood pressure to the right place and giving her strong diuretics to wake her kidneys up). Last week, the X-ray of her kidneys showed blood circulating and they looked viable. So, there is no reason to think she can't do it. We are really hoping and praying we get over this bump. It is very serious and imperative that we do get over it.

One additional concern is 'access' to Noa's veins. On Monday, the surgeons plan to make a little incision in her left leg and thread a vein since there hasn't been success thru just poking. This will enable them to move her meds to that new vein and remove that catheter from her chest.

Some good news is that they have lowered her Nitric Oxide and plan on removing her from it. It's always a good sign that Noa can do well as they slowly peel away the machines and meds that assist her. Her oxygen saturation rates have looked great, and so have her gases and lung improvement. The xray of Noa's lungs looks like she has a large amount of left lung in addition to the right one. These are all amazing steps in the right direction towards surgery, but we need for her kidney's to be healthy.

Thank you for being faithful and enduring with us. It can be tiring, but little Noa doesn't appear to be giving up her fight. She has more in her. I still dream about the day we get to hold her and see her smile. I pray that God has that on this side of heaven. xo


Thursday, November 22, 2012

Thurs, Nov 22nd

Today felt very relaxed when I entered Noa's room- probably because its a holiday. I was able to spend alot of time visiting with the bedside nurse, Dialysis doctor and Noas doctor as well. 

Today Noa has a different doctor than the last two days, but one that we like and are familiar with. She had a plan written on the white board of what she wanted to accomplish for the day (and you should know from my previous posts that I liked that very much!) 

The ongoing goal is always to remove fluid from her...which they did pretty good at today. I guess her pressures only allowed them to take so much off. I think they said since 7am they had removed over 100mls.

Today is the last day of Noa's antibiotics since she had her infection a couple weeks ago. Its good its ending- because her liver has to filter the meds, but its always a safety net since there are so many opportunities for infection with each poke, or any 'invasive' treatment she's receiving. In light of that, the doctor wanted to remove her foley catheter to reduce infection and possibly make Noa more comfortable as well. We really are praying for her kidneys to work and fill that tiny diaper with urine.

Another concern for infection is the med line in her chest (the old dialysis port). They have tried twice (or maybe 3 times) to find another IV access without success. Not only is it a possible sight for infection, but its also a possible sight for a clot. I also learned that it might also be a factor in why she remains more swollen on the right side of her body (as well as her head). Because that is the side the IV is on, and also where the ECMO cannula were in her neck. So we really need for them to be able to get a PICC (IV) line in and remove the catheter from her chest and allow that to heal.

Lastly, the doctor ordered a consult with the occupational therapist/physical therapist for Noa. They will possibly start working with her tomorrow. Their job would be to work with Noa on moving her little feet and hands around, as well as massage her on different pressure points to help her body be healthy. Isn't that great? 

And I think thats all. When I went to visit this evening, it was still mellow...they even had a radio playing Christmas music. One of the nurses had drapped a tiny knit blanket over her eyes (to block light and encourage rest), and she had her arm resting on a little toy....she seemed a little more like a baby and less of a patient.

Thanks for your love and support! Tonight our family went to some friends house for Thanksgiving dinner. We were grateful to have a home to be at and grateful for the kids to have some 'peers' to play with. It was hard to be away for Noa's first Thanksgiving...but thats ok...I'm sure she understands. xo

Wed, Nov 21st
a long hard day

Last night when we left Noa's room, we noticed a note on the white board that they were going to be changing her dialysis machine out at 8am. Its routine for it to be changed every 48-72 hours due to filter needs. And it wouldn't be such a 'big deal', but she's been having so many issues with the catheter (and having witnessed her first hypertensive crisis when she went on dialysis) I wanted to be there.

I ran over to the hospital in the morning and left Justin with the kids still in jammies. They were still prepping the machine when I arrived. The team was also prepared for any possible hiccups and called the right people to be on hand... the respiratory therapist, the dialysis docs and techs as well as Noa's doctor.

I was by Noa's side when they started the new machine. It was the first time I had seen her eyes really open since being moved off of ECMO and down to NICU. I took a little video for sweet that she was moving around a little and her eyes were checking things out. And in that moment everything went bad quickly. The dialysis doctor asked why the filter indicator looked like it was clogging...and then the machine started showing numbers that had them all concerned...and then Noa's heart rate began to rapidly drop and her blood pressure was extremely low. 

Then nurses and medical staff began to flood into the room and I backed away as the doctor began to give instructions to give her fluid (bolis) and meds, to turn up all the settings on her oxygen and nitric oxide. They called in the 'cart' which has the necessary tools to resesitate and treat her in a 'code' situation. It was so surreal and quiet as everyone waited for her numbers to go up. And they weren't. Her heart rate sat in the mid 40's for a minute or two (or maybe it was 30 seconds)...and I knew it was so serious...more people came in to assist the nurses, and our case manager asked if I could get Justin to come over and they would provide a volunteer to be with kids. He was already on his way. Eventually the doctor gave the orders to give her Epinephrine which caused her heart to quickly respond and it shot up to 110, went back down and then slowly started the climb back to normal.

They discovered that the catheter where they hook up the dialysis had some issues. There are two ports, one that draws the blood to go thru the machine for treatment and one that puts it back in to her....well the the one that puts it back in was clogged. It took so long for the machine to detect that it wasn't returning blood to her that she lost a lot of fluid/blood. Enough to cause her heart and pressures to dip dangerously low.

Everyone was disheartened by the incident. The doctor came over and gave me a hug...and tried to explain what happened. Justin showed up (all dishoveld and wet- I guess it was raining)...and we were back at Noa's side. She looked dusky colored. After removing Noa from dialysis again, they decided that the new plan was to have surgery come in and change out the catheter since one of the ports was clogged (and it clearly wasn't working after so many issues). 

Around 2pm, the surgeons removed the femoral IV from her leg and replaced it with a different and new dialysis catheter. The  femoral IV serves as the location for providing Noa with her meds and drawing blood, so they needed to find a new location for that. They decided to use the old catheter in her chest (the unclogged one), to be the med port for now.

At 5pm they restarted the new machine with the new catheter in her leg. It went smooth enough....there are some small issues to keep their eye on....but as of tonight, her numbers were good and its going well enough.

What a day. Thank God that He always provides support for us. I honestly didn't know if Noa was going to pull through on this one. In those long silent moments her heart rate was down, I saw some people look in my direction. I felt a numbness and probably some shock. 

I don't know where those memories are stored. I have a few of them now. At some point I will lay them in the hands of Noa's maker. Only He truly knows what I feel and what I saw and my thoughts. Only He can truly comfort me....any of us that grieve for this baby. 

Tues, Nov 20th
removing fluids please

It was a good day. My apprehension about having a new doctor was eased right away when he declared he wasn't planning on changing anything with her care...just to remove fluids. 

Noa has been so unstable that you fear any bold attempts to 'treat' her (not that we've encountered that). We've seen enough times where she declares herself sick and she causes everyone to be a little more gentle and thoughtful about her. 

The sedatives have been decreased to allow her to wiggle around a bit more which will help the fluids come off. The nurse (who has recently been caring for Noa a lot- and quickly becoming a friend), said she would try to slowly and gently reposition Noa on her side a bit for comfort and just to get her off her back. 

When I went to see Noa in the evening, they had successfully removed 240ml of fluid! We still have a ways to go, but headed in right direction. She was also taken off the Nitric Oxide when I left (its a drug that helps open up and relax her lungs)...but the nurse said she was putting up a little fuss, so had to turn her oxygen up to accommodate Noa. We are hoping she can stay off and have her oxygen turned back down to the room air setting of 21.

We have some friends in town with their new baby girl. Its fun to have visitors/helpers. We are grateful that everyone seems to be staying healthy!

Tuesday, November 20, 2012

Nov 17th-19th
In short...
Saturday: Great! 
Sunday: A Rocky day.
Monday: Recovering...

As of Saturday, Noa's oxygen saturation numbers looked so good that they turned down the settings on the ventilator. This means that her lungs and heart are working together as a team to oxygenate her blood/body more effectively. She is still on the 'special' gentle ventilation machine (VDR), and they were hoping to switch her to a traditional ventilator in a day or so. As of today (Monday), there were no plans to change ventilator. She had such a rough day yesterday that they had had to turn her settings back up. When she gets upset, all her numbers reflect it and she needs more assistance to be stable.

She did have another step forward. They were able to removal the two IVs that have been in her umbilical cord since birth. Usually those lines stay in for only a couple of weeks, so they were concerned about clotting or infection, but they were able to remove them before either happened. They still need those two lines that give them access to arteries for medications and drawing blood (to check her oxygen exchange or "gases", and to test her blood as she's on dialysis among other things), so the plan was to place a femoral line (in the front of the hip), which they've successfully done, and another arterial line either in her ankle or hand. As of today, they haven't been able to do it because she is so so swollen from retaining fluids, they can't feel or easily find her artery.

Working on Noa
When I went to visit Noa on Sunday morning, the Dialysis doctor was scurring around with some frustration. I guess Noa was left off the machine too long during the morning ECHO (which showed excellent heart function). When they tried to return her to the machine, it shut down because the 'return pressure' was too great. It was encountering some blockage or resistance. This occured last Thursday as well. After many hours, surgeons assisting, nurses repositioning Noa and lots of prayer and finger crossing, they were able to keep it going even though the pressure numbers were running higher than normal. One main issue is the size of the catheter in her chest. Its very large (adult) for a baby and its positionally awkward due to that. Best case (and essential at some time) is that she comes off dialysis. But at this point they need the machine to remove fluids and she needs to urinate!!

Lastly and the most major issue right now...she is becoming over filled with fluids. Its normal for someone who is sick to retain fluids....and Noa is. They have to keep giving her meds (8 or more drips) in addition to blood and other fluids that she needs due to being on dialysis. But none of it is coming off because her blood pressure drops low every time they try to remove it (and she's not peeing). Yesterday alone they gave her 600ml of fluid (THATS 1/2 A LITER!!!!). All that liquid makes her incredibly swollen and its also making all her organs swollen and it's in her lungs, which is not good.

Today (Monday) they decided to just let her rest even though they had planned on placing another arterial IV line in her and possibly replacing her ventilator tube (she's had the same one since she was born). Noa has proven that when you give her a day or so of rest...everything improves. When I left her this afternoon, she had a pretty stable day and they had managed to get 11ml of fluid off. The goal was 50ml. 

Earlier photo with sound buffer ear muffs
Its been sad to see her so swollen. Each time I go in she's bigger. Last night I couldn't help but cry...its just a physical reminder of how sick she is...and it can't be comfortable. She had a rough day on Sunday and I held her little hand a lot and tried to calm her during the slightest upset, like getting her mouth suctioned. Her eyes don't open because they are so swollen and she is sedated (though they've turned off the paralytic), but when she's upset, her arms move and her little feet flex and she wiggles her body around a little. Ugh, it sucks. Please pray she gets better. I can't stand to see her laying on her back everyday. She needs to be repositioned and bathed...and held. Poor baby. 

Thank you for those of you that have prayed for our health. I know it makes a difference. Emmaus started to come down with a cold, but it lasted only 1 day. Ruby couldn't breath out of her nose last night (and it felt like she had a fever) but she was fine today. 

This week will be a little different with changing of doctors due to the holiday. Tomorrow and the next day she gets a new doctor we've never met (we pray he has wisdom to care for her). And then another doctor for 4 days, then back to the one she has now. We pray for continuity and wisdom in care. 

Thank you for faithfully standing with us and honestly...holding us up some days.

Birthday  cupcakes from some dear friends!
Justin, Heidi, Ruby, Emmaus and Noa.

ps- we were able to go out for Justins birthday and enjoy dinner as a family!!

Had to add photo of Emmaus smile with pen!

cupcake #5!!!