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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!!!

Saturday, November 17, 2012

Fri, Nov 16th
Day 4 off ECMO

Today I was on my way into the hospital to visit Noa (while I was chatting on the phone with my sister) and I passed one of Noa's ECMO doctors at the entry to the hospital (she also was on her phone!) and as we passed each other, she paused and smiled and said, "Congratulations!"

I thought about that and realized that I haven't felt like being congratulated or felt the happiness of going off ECMO. I think I did for a couple of hours until she had her first real hypertensive crisis. (I sat on the couch in her room and watched her little arms flail around and her legs wiggle and then I realized that there was no real safety net to draw her back if she started to spiral in a bad direction. And then I realized how long this journey really might be ongoing, a new way of life). BUT, my point is this:
I think it is worth recognizing and being truly grateful and relieved that she is off ECMO. Each day is amazing, and today is day 4.

Although there are no more 'rounds' to attend in the a.m., Justin and I still make a routine of going in the morning with the two other little kids to see Noa and get an update. I learned today that they have a time schedule of care for Noa. They try to only fuss with her (change tubes, suction stuff, change diaper, etc) every 4 hours. And its at that time that they invite us to touch, talk or stimulate her. Otherwise, they prefer we're 'hands-off' and let her rest/heal. (This isn't really in effect for them until she settles out...with all the medical intervention she's needed lately...but we want to cooperate in any way we can).

Today Noa's gases weren't that great. They were higher than they like to see, so we have been praying for improved lung/heart function. I did learn later that one reason for her fluctuation in gas #'s today was her body adjusting to the removal of some meds. That information was helpful. Noa is very swollen (puffy) because she's been getting behind in fluid removal from not being on dialysis for those couple of days, and part of it is being on a medication that keeps her paralyzed (the movement helps her body get rid of fluid). They have waited to remove any extra fluid with the dialysis machine for now...but tomorrow they will turn down her paralytic and start to take a little more fluid off.

Today she was removed off of another medication that helps the blood move around her body (sorta 'opens up' the vessels leaving her heart), that way her heart doesn't have to work as hard to circulate that blood. But, she did well without the med...hurray! Another positive, is that her VDR (that fancy respirator) is set at room air settings (20% oxygen)- which is also very good. It might go up and down at different times depending on how she's doing, but being able to be at room air is good.

One of the events today that could've been a 'bump' (and a surgical procedure that needed our consent...ugh, I dread that), was a new IV line they placed in the front part of her hip that gives access to an artery (a femoral line). They are wanting to remove her umbilical lines soon to avoid infection and need a new line to draw blood from as well as give meds to. It doesn't look very comfortable, but the procedure went well (and they found the artery, regardless of her puffiness which was a possible issue).

Finally, my day ended with an evening visit to Noa, and a little peace with some issues that have been so emotionally unsettling for me. We have been feeling pretty helpless in this process of Noa's treatment...but especially lately. Since our transition to going off ECMO, a different floor (NICU), different care, and the nurses adjustment to new a new patient (and Noa's adjustment to them!), we've been trying figure out 'where we go from here'. Maybe I feel better (or more in control) with more information and a map of where we've been, where we are, and where we're going. We know we want to move towards surgery and for Noa to heal, but I realized it would be helpful to have some tangible markers, even if they change, that clearly show us what we're moving towards and what we're hoping for Noa. I think that would help us to feel like part of the team and feel like we can cheer her on and better share information. 

Anyways, I was able to articulate that better today and put my feelings into words to a couple of the lovely nurses that were serving Noa. They listened (through my tears at times) and both felt that it was a reasonable desire. And to my relief, one of the nurses (the charge nurse for the evening- the same nurse that gave Noa a 'spa day' last week) has encouraged me that she will communicate our need and try to get something in place for us that would help in that way. Whew!

So...other than that, just moving into the weekend and...JUSTIN'S BIRTHDAY!!!!! Happy birthday to the love of my life and the most beautiful and kind man (husband and dadoo) I know. Hopefully we'll be able to have a date this next week sometime.

Thank you again for praying. Let us know if you ever have any questions! And we will put more photos on soon....i know they're fun.


Friday, November 16, 2012

Thur, Nov 15th
Day 3 Off ECMO

I shake my head in disbelief everyday Noa is off ECMO. It is still day by day. And it has been pretty crazy to live like that. I realize that I would love a plan or to know what to expect or anticipate for the future, but I can't. Honestly this is such a regular lesson on letting go of all control.

At this point, I think we are sort of waiting for Noa to settle out from her move down to a different floor and transition to life off ECMO. And although she has hit a few bumps with going back on dialysis...her doctor has informed us of the general short term plan, AND has set it into motion. 

Her first night off ECMO was strenuous because of 2 (or was it 3?) hypertensive crisis' she had...either related or unrelated to going back on dialysis is unclear. But this morning when they scheduled her to go back on dialysis, they had a new and different plan in place to try and avoid a reaction from her like last time. One of the things they changed was to hyper saturate her with oxygen so that when she received fresh blood from dialysis, her body didn't have to work as hard to oxygenate that blood. They also took the time to slowly turn the flow up to its regular rate on the machine instead of all at once. Seemed to make a difference...for 10 minutes until the machine started to shut down because it was experiencing 'resistance'. So, they had her back off dialysis and spent the day trying to figure out what the complication was. In the end...they put an anti-coagulating med in the catheter (in case clots had formed) and it seemed to work. She was back on dialysis by 5 this evening and when I had my last visit at 9ish, all seemed to be ok. Her stats were pretty good and her gases were fair.

The plan now (that I mentioned the doctor had put into motion earlier) is to slowly ween her off the many meds she's on. She has been on two different heart meds and she's already been taken off of one. They also have decreased the second one considerably without ill side effects. These are good things. Another plan is to change some of the locations of her IV's and remove the ones that go thru her umbilical cord (belly button).  And, they will eventually ween her off of different machines (nitrous oxide, dialysis, and finally get to 'room air' with her ventilator). This will take weeks. And all of this to slowly prep her for surgery. 

She is slowly healing on her neck where the ECMO cannula were (I was able to see a the very large line of stitches on her neck when the dressing fell off today.) And they also removed the tube from the side of her abdomen (which they had used to released fluid that had built up next to her heart a couple weeks ago). 

I think that is most of the update....we will deal with things as they come. Sometimes I am unsure how much detail to include...but people can skim or 'dig in' according to time/interest!

On a personal note....I haven't taken much time to reflect or process all that's gone on (and all that's going on) since we arrived from Spokane. For some reason I keep feeling like I'm only in the moment with the immediate needs. There is a part of me that is disconnected and just going through the motions. I pray that both Justin and I take some time to debrief as individuals and as a couple in the next week or so! 

Thank you for all your prayers. I am so touched by all the stories I hear of people turning to God...even on their knees...on behalf of Noa and our family. It's awesome to know you are spending time with Him...because he is good and kind and wonderful. 
We love and appreciate you.

Wednesday, November 14, 2012

Wed, Nov 14th

I want to introduce you to a word used pretty often here with the Dr's and nurses, and that word is "Trending". " ...She's trending in the right direction""...We want to see how she's trending"... The best way I can define this word (besides the obvious) is: it's hard to put an actual (physical) number to some things (but it's still useful data)... Kinda of like a pattern or an M.O. (but not one you can quantify). Does that make sense? I'm a little torn myself.... I see it as putting a good light on something that you can't measure or rely on... It gives me hope for next time which could set me up to be disappointed if next time doesn't go as well. I'll let you decide if you like it or if it works for you (you might see us use it to give an update). 

Once again Noa is in charge. Yesterday we thought that we might have a couple days in the PICU (Pediatric Intensive Care Unit), still on dialysis and recovering from the pulmonary hypertension crisis episodes frm the night before. The circuit looked good last night... but, Noa and the dialysis circuit decided that today would be the day. They felt a need to move her sooner than later to transfer her care since she was off ECMO and she is a neonatal (baby). So, she was transfered to the NICU. She didn't like the move so she caused a little drama today.

  -Heidi made it to rounds (turned out to be the last time) and the decision was made to move her this afternoon. We ended up staying at the hospital and eating in the Atrium for times sake. Our case worker Susan, watched Ruby and Emmaus so that we could both be there for the transfer. Good thing Wall-E was on when we left. We watched the nurses carefully unhook and unplug everything to create a mobile ICU unit to take down to the 2nd floor. Out the door, down a short hall to the elevator, and down to the NICU. I think it took 8 people in collaboration to move her. Once she started to settle into the new room, she took a bit of a hit. Her C02 climbed, heart rate was up, and blood pressure was really low. She's a pretty "sensitive girl". She doesn't like change (movement, being newly hooked up to any circuits, suctioning, ext..). Are you seeing a pattern?...( a trend?). Sounds like the NICU is just what she needs.


How the NICU works:
The NICU is very hands off and more observation (unlike the PICU, being more hands on). There are smaller windows to keep the room dim, the lights are minimal, and not much more sound than the ventilator humming away. The nurses do something called "cluster care", where they come in and do everything all at once and then leave the room for long periods of time..keeping an eye on her stats and checking on her periodically. They're able to keep her less sedated because she's less stimulated, so not as much touching. 

She still off of dialysis due to the move today and how it caused some instability in her body- they are not wanting to push her too much. So, instead of putting her back on dialysis, they gave her a diuretic to "wake up" her kidneys and see if she'd pee on her own instead. It didn't end up working so back on dialysis tomorrow. Last time she started a new circuit it sent her into a crisis, so lets hope and pray that she does well. They'll be prepared just in case anything goes wrong.

Like one of the Dr's. said to Noa today, "No schenanigans."                                                        

So, today was a bitter-sweet day. Kind of like coming off ECMO...(we know it's a good move but hard and scary to leave what's been working). The NICU will have more specific care for what she needs now. While on ECMO, Noa had NICU nurses come up to the PICU to help with the circuit and for the bedside care. And while on dialysis, Noa will have PICU nurses come to the NICU to run that circuit... So we'll be seeing a lot of the same faces.

Thanks Again

Tuesday, November 13, 2012

Tues Nov 13

We went to bed last night and woke up this morning knowing that the plan was to move Noa down 2 floors to the NICU sometime today. Not much gets down early due to the shift change from 7-8am and rounds around 9am, so we knew that it was the same routine this morning. Heidi went in to get the report during rounds while I hung out with Ruby and Emmaus in the lounge area. We've started utilizing the theatre on the 8th floor for added distraction. Movies start at 9:30 and play till 5pm. Today was Princess and the Frog. Heidi came up and we switched roles. In the room I talked to the dialysis Dr. first. Mainly about the transfer to the NICU and what it would look like for Noa. The dialysis machine seems to be as sensitive as Noa about being moved (they don't like it). They wanted to take her off the circuit, move her, and put her back on when she was down there. The Dr. said that she would most likely react to the change like she did last night (the Pulmonary hypertension crisis she had at 8pm). Turns out, she had 2  more episodes through the night. I can't imagine what she's going through on the inside... how it feels, what she thinks.... We're just trying to give you a piece of how we feel, and how we feel for her. I can tell you this, she's a lot stronger than me. All she knows is how to fight for her life. 

(Even right now as I'm sitting here at 10:45pm, she's having her OG (oral gastric) tube changed out because it's clotted. I'll remind you that it's the size of tube that adults use as well. She has pretty thick mucus coming from her stomach, it has some blood in it so it's thick and clots pretty easy. The nurses are joking about Noa not being able to go a shift without any drama.)

It was decided some time in the day that they didn't want to push her any more than necessary till she's stable enough to come off dialysis or the circuit needs to be changed (a day or two). The room is being kept much quieter and darker which is more like the NICU (why the picture is darker). She still has two nurses each shift. The nurses say that her blood gases look amazing. 

We're going to miss being in the PICU, the Dr's, being involved in the rounds each day.... It will be a new adventure for us in the NICU. We'll see a lot of familiar faces, it'll just be a new system. She almost always had a NICU nurse up in the PICU with her. 

We're praying for a day or two of rest and recovery for Noa (and no more crisis's). Also I think that Heidi and I just need a day or two without excitement to except that she's off support (except for respiratory), and although it a big step, it's not over.

The question we've been asking ourselves since she's been off ECMO is, "Is this the beginning of a long journey or the end of one?"

Thanks for listening,

Verse of the day/ Psalm 100:4-5 (Theme the last couple of days is "His unfailing love")

Sun, Nov 11th

Today was the rainiest day yet here in Portland, but it didn't keep us from spending a couple hours downtown at Pioneer Square. We looked out of place with our down jackets (not rain shells), but come's snowing in Spokane. We picked up a coffee mug at the Saturday Market (even though it's Sunday). I thought there was a line for an amusement ride of some kind..turned out to be a VooDoo Doughnut (looks more popular than Top Pot in Seattle). We saw a lot of cool shops that we want to go back another day to go through.

Verse of the day/Isaiah 12:4
Mon, NOV 12th Continued....

We sat in the waiting room after signing the consent to proceed with taking the cannula's out from her neck. We had an hour till the surgery and an hour after that for the procedure, so we figured that we had time to get Ruby and Emmaus to nap before heading back. We got them down, and Heidi went back to the "lounge" and waited till they were done (that's when she did this afternoon's update). I'm sure we were both contemplating the same thing, at the same time... "She's been surviving on this machine for the last 2 weeks and now she's coming off, on her own, and no going back on..?" 

I'm just going to take you down one train of my thoughts: 
Noa is 3 weeks old (21 days). Beside looking at her and the occasional touch or kiss, I really don't know her (haven't even heard a sound from her)... But I'm madly in love with her. She practically been on life support since she's been born, having machines do the work for her. I know the risks involved with prolonged time on ECMO, and it still scares me to have her come off... What does that say about my faith? Do I trust the ECMO circuit more than I trust God?  If you would have asked me even yesterday, I would have told you, "I have 100% faith and trust in God"( I'd still tell you that today...) But it puts your money where your mouth is when it comes to this; "it's up to Noa and God now..." "I didn't have any control then, I sure don't have any now. So what am I hanging on to?" I'll have to get back to you with an answer...

We went back to the RMH for dinner and for the kids to settle in for the night. Heidi went back to be with Noa during the shift change and I started a movie in bed (Cloudy with a chance of meatballs). An hour later, this was the texts I got from Heidi...  

....Well, relaxing was impossible so I got the kids dressed and ran over there. We got to the waiting area and Heidi came out saying that "she's stable now."

She was off dialysis for a good amount of time and they had just put her back onto that circuit when the episode happened. She's a pretty touchy girl, she doesn't like change very much.    

I'm with her now and things are stable. I find myself staring at the monitor more than her because it tells me more..and right now her vitals look good. 

Getting back to that question.. Here's the thing, Gods not putting me to the test... He's not waiting for me to have this moment of clarity. All I have to do is "Praise him through this storm". He knows...

Verse of the day on my IPhone Bible App. Psalm 33:4-5

Monday, November 12, 2012

Sun & Mon, Nov 11th/12th
Coming Off ECMO

Its 2:47 pm right now on Monday, and I figured the events that have taken place over the last couple of hours are worth posting now...along with yesterdays information.

I am waiting in the family lounge while Justin is back at RMDH while the kids nap. At morning rounds today, it felt like a "Monday" with lots of staff and information being exchanged. Yesterday was a rest day for Noa and they felt she looked good. As of this morning, she had gone almost 2 days with no sign of infection, so they felt that was under control. They also were able to take large amounts of fluid off of her that was needed for one reason or another (infection, circuit consumption, etc). One change they made was on her anti-clotting med...and they were continuing with that for now. 

Her xray looked pretty good, but there was some concern about air in her belly (which is up in her it's a concern because it's taking up very valuable lung space). They regularly pull air and fluid out of her stomach with a tube that stays in place. They even use an 'adult sized' tube to manage the situation (she doesn't like it very much...I see her gag on it a lot) and there was talk about replacing the tube with a new one.

Another very large concern is a blood clot in the circuit. Its in the 'bladder' portion, but can be dangerous if dislodged. If it does come loose, than it will move to the 'lung' of the circuit or possibly to Noa.

The plan was to trial Noa off circuit tomorrow. And its been communicated very clearly that if she doesn't do well off circuit (usually because of the acidosis due to her pulmonary hypertension), then they feel like they have done all they can with ECMO and there is no reason to continue prolong her time on the circuit. 

So- we left sorta stunned that the time has finally come. The line in the sand. And we were just planning on driving around felt like the day we found out she had CDH. But before we could make plans, we were called back to the hospital. The blood clot had come loose and moved from the bladder to the 'lung' of the machine and they were changing it at the moment. Noa had been off ECMO for 40 minutes when we arrived and was looking good.

The doctor said they didn't want to have another set-back by changing to a new circuit with all that's been gained and they wanted to go ahead and use this time to trial her off and see how she does...but they had another ECMO machine on standby if it was needed. Another 10 minutes later, the surgeon came in and told us that it had been decided amongst all the drs, that she was doing well enough to move forward and thought it was time to remove the cannula from Noa's neck. So, Justin and I signed the consent. There is no going back on ECMO from here. And although we've put her in God's loving hands from the beginning...this is really a time of releasing her.

So- I am waiting to hear how the surgery goes. So many possible complications...massive bleeding, stroke, brain bleeding, and possible issues with trying to re-use the vein (for a temporary dialysis port) due to all the trauma that occurred with the cannula tube just a few days ago. 

This is surreal, but I do feel God's peace that passes understanding and know there is one set of footprints in the sand right now.