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. 

Friday

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

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 her...it doesn't have a history of going smoothly. Also, the dialysis catheter in her leg can only function for so long...as 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.

Tuesday

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 leg...it 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.

XO

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 her...as 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...to her. 

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. 

CAN YOU BELIEVE IT? 

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

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.

BUT, THERE IS STILL HOPE!!!!

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

    

Thurs, Nov 22nd

Thanksgiving

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