Saturday, December 31, 2011


I told Al today that I was going to title this post '2011- Good Riddance' because at first glance, this year has been so hard and my gut instinct is to feel like it has not been one of our better years. Of course, Al pointed out to me that 2011 has been our first real year with Max and Addie, that we've fallen in love with them this year and that the first year of their lives has, of course, been super precious. Then I went back and looked at old photos in my endeavor to make a baby book on shutterfly and wow, it's amazing to see how far we've come in 2011. And to realize that although it has been a rough year, it has been a year of progress, miracles and hope. I look at these pictures of tiny babies and then I look at where we are now and I feel blessed knowing that we are ending 2011 far better than we started it. And because of that, I can't say good riddance to 2011. I will, however, happily say welcome to 2012! Firstly though, a recap of 2011. I included the medical highlights for those interested. Otherwise you can just scan through the photos!

-Max and Addie are diagnosed with Congenital Nephrotic Syndrome (01/17)
-The babies are transferred by ambulance to the big hospital in the city (01/18)
-Addie develops a life threatening Strep B infection (01/18)
-Max and Addie begin swelling and need to start albumin treatments (01/31)

-Al's parents visit from Australia (02/01- 03/02)
-Addie goes to surgery and has her first Broviac or central line placed (02/02)
-Max goes to surgery and has his first Broviac or central line placed (02/09)
-Max develops a UTI and becomes septic, requiring a week on the ventilator (02/10)
-Addie masters eating without a feeding tube (02/12)

-I return to work (03/10)
-Addie is diagnosed with 'neutropenia' or poor production of a type of white blood cells and is transferred to isolation for a week (03/10)
-Max has a bronchoscope and is diagnosed with traechomalacia (03/14)
-Addie's central line comes out of place and she goes back to surgery to have a new one placed (03/16)
-Max masters eating without a feeding tube (03/28)

-Max masters breathing on his own without any assistance from a canula (04/22)
-Max and Addie celebrate their first Easter in adorable smocked clothing (04/24)
-Max and Addie both have their first nephrectomy, or the removal of their left kidney and the placement of the peritoneal dialysis catheter (04/25)
-While in surgery, Max has a new central line placed and both babies have a hernia removed (04/25)
-Max and Addie begin smiling! (04/24 Max and 04/25 Addie)

-Addison's second central line comes out of place and she goes to surgery to have it replaced (05/19)
-Max and Addison do not pass their 'newborn' hearing screen (05/23)

-I finish school for the summer (06/03)
-Hannah arrives from Australia (06/03-06/17)
-I turn 29 (06/16)
-Max and Addison both have their second nephrectomy, removal of their remaining kidney (06/24)
-While in surgery, Max and Addison have an ABR hearing test and both are diagnosed with likely profound hearing loss
-Max and Addison begin peritoneal dialysis using manual dialysis done by a nurse (06/26)

-Max's central line is removed and he has not had one since (07/02). Addison's is also removed only to have to place it again within the week.
-Addison is diagnosed with congestive heart failure meaning her heart is struggling to pump due to fluid overload (07/05)
-Addison goes back to surgery to recieve a fem line or type of central line in order to recieve IV heart medications (07/06)
-Addison stops breathing due to pulmonary edema or fluid in her lungs and has to go on a ventilator for 4 days (07/10)
-Max goes on his autocycler! (home dialysis machine (07/14)
-Addison is recovered and we are able to remove the central line as she is off IV heart meds (07/27)
-Addison goes on her autocycler (07/28)
-Max and Addison stop eating on dialysis and return to needing tube feeds (07/29)

-Max moves out of the NICU and onto the pediatric floor (08/04)
-My mom, Al and I get trained for home dialysis (08/08-08/12)
-I go back to work for the school year (08/15)

-Al's mom gets to come and stay with us and the babies for the next 7 weeks (09/03). Al's dad joins her in October
-Wonderful month full of visitors, growing at home and us all getting to be together every night

-Max and Addie's blog begins! 10/03)
-Max and Addison have a repeat hearing screen and are diagnosed with moderate hearing loss (10/05)
-Max spends one night in the hospital for high blood pressure (10/08)
-Addie gets her first tooth (10/14)

-Aetna approves Max and Addison to be transplanted at Children's Memorial Hermann (11/02)
-Max and Addie are dedicated at Crossroads Baptist Church (11/6)
-Awesome Thanksgiving week all together at Nana and Papa's house (11/20-11/26)
-Addison begins grunting and is admitted to the PICU for 'pleural effusion' or fluid in her chest cavity (11/28)
-Addie undergoes surgery to remove the area of her chest cavity accumulating fluid (11/30)

-Despite initially promising news regarding Addie's surgery, she is unable to stay on peritoneal dialysis and it is decided she will start hemodialysis (12/13)
-Addie goes back to surgery to have a hemodialysis catheter and second chest tube placed (12/14)
-Addie has her first hemodialysis session (12/14)
-Addie's second chest tube is successfully removed (12/19)
-Addie returns home after 22 nights (12/20)
-MAX AND ADDIE TURN 1!!! (12/22)
-I recieve the news that I have been approved to be Addison's kidney donor (12/23)
-A very merry Christmas with both babies home is had! (12/25)

And so that was 2011. Max spent 242 nights in the hospital and had 3 surgeries. Addison spent 268 nights in the hospital and had 8 surgeries. So I am ready for a new year and praying for more nights at home all together, fewer surgeries and complications and well, less drama! But, never in a year have we learned so much about God's faithfulness, about our own strength and about the value of our family and close friends. I leave 2011 a better person than I came to it and more importantly I leave it with the two most precious babies who have captured my heart. I fell completely in love in 2011. And I learned that loving your baby will break your heart and it will make you feel like you can fly. It is radically life changing. So I hope I will always look back on 2011 as the year that God worked many miracles in my babies and in my own heart. And I pray for his continued faithfulness and guidance as we start 2012 with a baby on peritoneal dialysis, a baby on hemodialysis, Max about to get a lot of neurological testing done and Addie's transplant date the source of hot debate in the hospital. We are starting the New Year with a lot on our plate but with great anticipation and hopefulness for what God will do this year.

And to all of you who read and pray and love and care, thank you for seeing us through 2011. We are very blessed by all the love bestowed upon us and hope you'll join us in 2012 as Max and Addison's amazing journey continues...

Friday, December 23, 2011

Praise Report!

I have three long posts I have been meaning to write- all about Addie coming home, a one year birthday post and a where we are with transplant post. Unfortunately life has been crazy busy with Hemo, getting Addie home, donor testing, their first birthday and now Christmas approaching... so my lengthy posts will just have to merge into one short post. But I did want to just quickly let everyone know that Addie is home and doing well. We were finally able to pull her second chest tube on Monday and they released her to come home Tuesday afternoon. It was a wonderful feeling to bring her back home. We were a little nervous the first few nights (and by a little nervous I mean I think all her nurses and doctor will be changing their numbers soon since I sent way too many 'is this ok?' texts!) But she has seemed really well today so we are relaxing and loving every minute of being together.

She will, for the time being, go into the hospital 5 days a week for her hemodialysis which goes for about 3 hours including set up and so forth. I don't mind the trips in right now because it means the doctors are seeing her a lot and making sure she is ok. She managed her first 6 hemo treatments without recieving a blood transfusion but she was way too anemic and unhappy so on Wednesday her doctor said he gave her a birthday and Christmas present- lots of blood! We did careful matching and washing of the blood and special medicines to prevent her from forming antibodies to it so the transplant surgeon thinks it was a good thing for her and shouldn't have any real consequence. Do continue to pray for her, though, that these transfusions will be few and far between! In the meantime, she is super pink and it's pretty adorable!

In other exciting news, I have had more tests done than Addie this week I think! Based on Al having some issues with arthritis that need a bit more time to address pre transplant, we decided to go ahead with me getting all the extensive testing. And was it ever extensive! I had so much blood drawn and I had X rays, CT scan, a 24 hour blood pressure monitoring, glucose testing, some weird nuclear study to check kidney function and I kid you not like 10 hour long interviews. Honestly I would gladly be stuck for blood or left in a scanner for an hour before I could endure another 'are you really sure you are ready to donate' interview. I know they want to be thorough but I know with 100% confidence in all my heart that this is what I want to do so I tired of the interviews. BUT, I found out today that all my testing is back and I have officially been approved by the medical board to be Addie's kidney donor!!!

This is a cause for great celebration for our family and I am filled with joy that I will be able to help Addie in this way. We are also overjoyed to know that Al is a match for Max so over the next few months, we'll be letting Addie recover, letting Max get stronger in some other areas, let Al get his arthritis pain manageable and then Al will donate his kidney to Max. We did not know before this week if Al was even a blood type match so we feel so relieved that things have worked out just as we hoped they would.

We don't know when the transplant will be. We are in the perfect situation of having a donor completely ready and approved so that whenever they decide is the perfect day for Addie I am ready to go! We anticipate it will be in the next month. Addie has lost a significant amount of weight and has been stuck in the hospital in a crib for three weeks so Dr S, her awesome doctor, is weighing up the benefit of giving her more time home, recovering and growing versus the cost then of more hemodialysis. Dr S in currently in New York and although she's communicating with me via text, she wants to get back next Wednesday and see Addie for herself and really carefully consider when she should transplant. So we will keep you posted. You can start praying in advance for our family because it will be a really huge deal having Addie and I in surgery together at the same time and then recovering together. We are excited to move forward to a better future for Addie though so we look to transplant with more excitement than nervousness, although both are definitely present.

And also Max and Addie are one!!! It's a huge milestone for any family to have their baby one! It is particularly special for us as several times over the past year we have been told some troubling statistics about their chances of making it to one year old. And here we are. Proving that God is bigger than a big bad kidney disease. With His help, the wisdom of our doctors and our family's determination to fight like crazy for them, we know Max and Addie will have many many more happy birthdays to come!

Wednesday, December 14, 2011

We made it through today!

Today was a really big day for us. We've had some pretty big days over the past year and some of the nurses and I were bantering over whether today was the worst day or whether it was one of our other crazy days ('surely today wasn't as bad as the heart failure day!' 'at least Max didn't also have surgery today!') So today may or may not have been the hardest day on us but it was certainly right up there! But I am happy to let you know that Addie came through today fine. She is sleeping now, having just finished her first hemodialysis treatment. She left for surgery at 1030 am, came out of surgery around 330pm, began dialysis by 4pm and finished around 630pm. It was a massive day for her little body. By all indications, she seems to have handled things well and she is stable and in a better place than she was 36 hours ago.

There are still a lot of uncertain days ahead as we figure out how to make hemodialysis as effective and safe as possible for Addie. Additionally, she got a new chest tube today so we need to figure out how to get her chest drained and healed and the new tube out. But, today was the scariest day as surgery is scary and her first hemo treatment was scary. So we are pleased that today is behind us and pleased that Addie is safe and that God protected her through some pretty risky stuff. And we'll just keep taking the other stuff one day at a time and praying for that same protection over her and sweet Max each and every day.

Thank you for the support and prayer and love for sweet Addie, her brother and Al and I. We feel very blessed to have people in our lives to walk this road with us and be there with us, either in person or in prayer. Our hearts are full of love and gratitude to all of you.

Tuesday, December 13, 2011

Time to Move On- Hemodialysis

The past two weeks have been an elaborate effort to avoid hemodialysis. Two weeks ago when we first discovered dialysis fluid in Addie's chest, we thought we would be doing hemo. Then we created a whole plan to try and avoid it. We've been patient, we've prayed and we've waited. It was a worthwhile exercise and there were days when we really thought we'd get away with it. And in some ways, we came very close. Her original chest area did heal. But since we now have a new area gathering fluid, Dr S decided today that if we don't stop this and move to hemo, Addie could end up very sick very soon and her body has been as patient as it can be.

So we move on. We start hemo. Addie has been on intense fluid and calorie restrictions and 2 weeks of being thirsty and hungry have taken its toll on her. She has lost a lot of weight and little babies just aren't meant to be on these kinds of diets long term. Additionally, being restricted from dialysis has caused a myriad of other problems. If you were to come see her, you'd be surprised to see that she still smiles and plays and is relatively cheerful (although notably less so the past two days) but if you were to look at the bloodwork and see what is going on inside her body, you'd realize she is actually a pretty sick little girl.

So it is time. And I know that. I am disappointed but not shocked. I don't think I could handle another two weeks of watching her starve and be in this situation. I don't know what we will do about her chest- presumably another chest tube or drain it or something. The surgeon is in the OR with another case so he's MIA at the moment so we don't know what his plan is. But from a dialysis standpoint, today we address her high sodium levels and get her stable enough for the OR herself. Right now, anaesthesia wouldn't accept her because her electrolytes are so messed up. So hopefully we get those managed. Then tomorrow morning she should be able to go under general to get a hemo catheter. And then she starts hemo tomorrow afternoon. We will be able to give her effective dialysis without putting fluid in her body and exasperating her chest situation. Effective dialysis means she can eat again. And she will get stronger and better.

And that's the good news. The bad news, well you can read my post from a couple of weeks ago. It seems unhelpful now to go through all the reasons why we didn't want to take this path. It is what we have to do now so discussing the fact that it really is a tough option for her is just sad. But we will ask you to pray. There are risks involved in hemodialysis due to the removal of blood from the body. There are immediate risks including seizures and problems with the acute fluid shifts. And there are long term risks for transplant. So Addie could really use your prayers during this time in her life. We are just having to trust God to protect her during her treatments and to protect her body and ensure it will still accept my kidney in a few months time. We trust Dr S who says this is the best situation for her and we trust God more and that's all we can do right now.

Please pray specifically for Addie today that her body will stabilize so she can go to surgery tomorrow. For successful surgery to place the catheter. And for her first hemodialysis treatment. We really appreciate the support during this very difficult time.

Monday, December 12, 2011


I find posting updates to be quite a challenge when I feel like things change really quickly around here. In the space of a few hours every morning, we will have like 4 different senior doctors come see us and they all bring their own contradictory emotionally charged news. This is Great! Hooray! Oh no! This is bad! Oh no! This is terrible! Maybe we can do this and all will be ok! But what about this! Oh no!

They do not seem to appreciate the need for them to sum up Addie's medical situation in a short Facebook ready sentence. I want to keep people informed so I try to wait until I think i have some indication of what is going on and then boldly post. And I promise you like 10 minutes after I press Post, someone comes in with an entirely different story.
It has been 2 weeks since I had to rush straight from school to PICU and this whole drama began. And I'd love to say things are wrapping up or that we have a great understanding now of what all is going on. But things are really still pretty uncertain. And hospitals have this way of snowballing drama. So the area where she was initially accumulating fluid does seem to be 'fixed' which is awesome. However, somehow in the process we've accumulated some new problems. When the chest tube was clamped, it appeared to have allowed air in the chest which now seems to have created a space for fluid to accumulate. And in order to allow her chest time to heal, we held her dialysis or gave her poor quality dialysis for the last two weeks. And of course if she could do perfectly well on 6 hours of dialysis every other day, well we wouldn't give her 18 hours a night at home every night. And so now some of that is catching up with her. Fluid is building up in her lungs and her electrolytes are all out of whack.

So that's where we are tonight. And I don't know what we'll be looking at tomorrow. We're trying a bit better dialysis tonight and think we can help some of her issues with that. However, whether that will in turn just build up more fluid in her new fluid spot, I don't know. There's a lot of options still floating out there from another laproscopic style chest surgery to a big chest surgery to another chest tube to reverting to hemodialysis. And today we also met with the transplant surgeon who is definitely trying to figure out when and how transplant figures into all this. We are planning on really jump-starting my donor workup starting tomorrow so that we have that option more ready to roll. Since all these issues are wrapped in dialysis, getting her off dialysis is really the ultimate goal. So I guess we are just figuring out how to get her healthier, get me approved and get to a point where she is strong enough for transplant as soon as possible.

It's a strange place to be because life can be really simultaneously crazy stressful and also kinda boring. You have a few hours a day where it's full on doctors coming in and having to process insanely complicated medical stuff. And then you have hours of waiting to find out what comes next. And you are not relaxed and you are so distracted so it's not like a good time to get anything done. But time can really drag on. The days seem really long. The nights seem to go forever! I wish my life was a Grey's Anatomy episode where they could just skip ahead to the outcome and wrap up a week long drama in an efficient 45 minutes. So I watch TV, read random crap online, shop on Amazon and just find ways to try and stay distracted while we wait.

Max has had an interesting few days as well. He had an echocardiogram after Dr S heard a heart murmur but while they did hear the murmur, they said his heart looked great. So that's awesome. Then today he saw a neurologist. Which really just started a process. We are trying to understand Max's motor problems and answers about those kinds of things can be pretty hard to come by. The neurologist does believe there is a neurological basis for Max's lack of gross motor skills but does not know what it is. He is interested in looking for connections to their kidney disorder although Addie's completely different situation seems to contradict that. It's hard to know what exactly the future holds for Max in terms of when he will reach milestones and really a bunch of tests aren't going to give us great answers anyway. We adore Max, he is the sweetest little boy and we are so proud of him. We'll be getting him lots of therapy and keep seeing all the right doctors and we'll just see how his motor skills develop. If I let it, I could get really worried and upset by it so I really try not to. We have gotten through a lot so we'll figure it out whatever it may be. And he's so happy and he's home cuddling with Daddy every day and while Addie and I are up here dealing with super drama, we know that is of course a wonderful blessing.

People are praying for Addie and I know people are praying for us as well. Please pray for energy. I have never known tired like I feel now. I'm not getting anywhere near enough sleep and even though I'm exhausted, I still have to be up at 1am talking about chest X rays and really important things. I feel like living at the hospital feels like living with perpetual terrible jet lag. You just long for sleep and wish everyone around you would stop acting so full of energy and like it's not the the middle of the night. Thankfully my mom has been really helpful and we try not to miss more than 2 nights sleep and swap off some staying in the room so the other person can sleep a few hours in a real bed. And that is just the physical fatigue- how exhuasting it is emotionally is a whole different story and I don't even really know how to describe it because I've never been through anything like it. But as exhausting as you can imagine it must be, it totally is.

On a positive note, I seem to burn so many calories with all the long hours and stress that I have eaten like 8 Crave cupcakes in the past 2 weeks and at least 10 bags of Bugels and amazingly still lost weight. So I am pretty excited about attempting to set a world record for how many Crave cupcakes can be consumed in the month of December!

So that's life right now. It'll get better one day. Not sure when but I know it will. God has given me a peace that Addie will get transplanted and her life will get much better. I'd love it if he'd give me a specific timeline but for now, I do have a calm that no matter what rocky road we have to take to get there, there is hope for an easier road ahead for Addie. (and for Max too! Although Max is kinda awesome at dialysis and has a lot more non-kidney issues so transplant isn't as much 'the answer' for him as it is her). So yeah, Addie will be home again and I will get uninterrupted sleep again. This isn't forever. So we are just hanging in there for now and enjoying lots of time together, enjoying getting to visit our favorite nurses and doctors, enjoying cupcakes and enjoying having such a big audience to admire her impressive Christmas wardrobe.

Our Family Christmas Photo taken on Thanksgiving Day- Addie really would prefer her Papa to stop taking her picture and pick her up!

Saturday, December 10, 2011

Addie's big night ahead

It has been 10 days since surgery and 10 days of waiting, wondering if Addie's chest is healing, praying and getting mighty sick of being in the ICU. We trust in the wisdom of the doctors who have wanted to give Addie plenty of time to heal before pushing her at all. We've had a couple of times we thought we might be making some progress only for the doctors to say we needed to wait a bit longer. But now today we are moving forward and giving Addie's little chest its big test. If she does awesome we are a huge step closer to home and she just might be spending her one year birthday at home after all! If today does not go well, then I guess we're kinda back to square one. But nobody is talking too much about that. We're hoping that is a conversation we don't have to have. So for tonight we need lots of prayers for Addie that these changes go really well and that we can get our sweet baby girl home and our little family back together under one roof.

We are actually doing three big changes today (hey, when it rains it pours around here I guess!) First of all, Addie is being moved OUT OF THE ICU!!!! She will move to intermediate care 'on the floor' which is exciting. She's been looking way too healthy and happy for the ICU all week so we will be glad to make that the move out to somewhere that just automatically sounds like things are less serious.

Next, we are trying Addie back on her home dialysis machine. Which is awesome because I hate the manual dialysis we have been doing. It makes it impossible to get any sleep up here and as long as she is on it, she's automatically not close to going home. So she'll be back on her machine on a program very close to her home one. She is back to full feeds and extremely happy to not be hungry all the time anymore.

The biggest deal of all though is that we will be clamping or closing Addie's chest tube to see what happens. Addie is draining way less out of her chest tube she is still draining a couple hundred mL while on dialysis a night. The surgeon thinks she may continue to as long as the tube is open. So we will try closing it and one of two things will happen. Hopefully (and PLEASE pray for this outcome), the fluid will stay in her abdomen and not accumulate in her chest and her midnight chest X ray tonight will be good. We will watch it over a couple of days and if fluid does not accumulate around her lung, she has proven she no longer needs the chest tube. We can then pull it and hope to get her home in a week or so. If fluid does still move into her chest (either because the procedure did not work or because it just hasn't been enough time), it will accumulate due to the tube being closed and her chest X ray will look cloudy. We will have to open the chest tube back up and start to look at what next.

So please please pray for Addie starting around 6pm tonight that she can handle the chest tube being closed, that she is successful on her machine and can stay out of the ICU! We are praying she will be home in a week and that we won't be back here until transplant time. We would greatly appreciate your prayers, positive thoughts and love as Addie prepares for this big day!

Today at the hospital Addie had her daddy and her best friend Max come visit to wish her luck for her big night!

From 2 days before Addie was admitted to hospital, with their Uncle Adam in their matching Christmas outfits

My sweet babies- praying they'll be back home together again soon.

Monday, December 5, 2011

Waiting and Seeing

I've posted on Facebook some updates but I thought I'd take a moment and try to explain what is going on- or more like what isn't going on- at the moment.... What isn't going on is dialysis. We've been off dialysis for 48 hours so we have had a pretty uneventful couple of days. Today she'll only be on dialysis for 6 hours to pull some wastes and toxins from her body. Because nothing is going out, very little can go in. So she is on very restricted feeds and hungry so that is a shame. But we are hoping that this time of limited dialysis will be what her body needs to heal and will enable us to avoid further procedures and problems. I will try to explain what has happened in the past few days that has slowed down Addie's recovery...

In order for the surgery to have been laproscopic or minimally invasive, it was done laproscopically and when the area where the leak was coming up was found, the surgeon scraped the tissue and stapled in. The idea is that the tissue will scar together to close the leak. There are no actual stitches holding it together. In order for him to have stitched her up, he would have had to do a much bigger more invasive surgery which we were hoping to avoid. We knew healing would not be immediate but we were hoping Addie would tolerate dialysis a little better than she did though as large volumes of her dialysis did enter her chest after surgery. This poses problems for healing because the tissue isn't scarring with so much fluid flushing through it all the time. We were hoping for far less water in her chest and a quicker recovery.

But the surgeons and doctors do not want us to lose hope yet. So they have tried giving Addie days off dialysis by restricting her food. Basically This is a temporary measure as without kidneys, Addie will need some dialysis again today even with restricted feeds. But we will try to see how little dialysis we can get away with giving her this week and see if we can get her chest to heal.

If it still will not scar and heal, we have two different options. One option is that we start her on hemodialysis. This will involve surgically placing a port or a catheter and then allows us to give her 'blood' dialysis without putting any fluid in her body. Keeping her chest dry for 2 weeks could allow the scarring to occur. Then we'd try her peritoneal dialysis again and hope and pray she doesn't leak this time. The other plan is to take her back to surgery and actually do a more invasive open chest surgery with a proper big incision and they would actually stitch the area closed and sew her lung to her diaphragm to remove space for fluid to accumulate. This would be a big surgery for Addie but the surgeon feels it would completely fix the problem. She'd need a couple days off dialysis again but hopefully could then go back to her PD without it leaking as we've sealed it this time. The surgeon is a proponent of the open her back up plan. The nephrologists were leaning more towards the putting her on hemodialysis plan. Both plans have risks so it's not easy to know what is best for her both now and as a hopeful transplant candidate. So I am not sure what they'll end up doing if we reach that poing. We are of course praying we won't have to face that decision and that she has healed over the past couple of days.

Waiting is really difficult. It is hard not knowing right now if Addie will be better and coming home next week or if we'll be starting a whole new scary process. We are praying and hoping for the very best outcome but at the same time preparing ourselves for the other options that have been presented to us. I am back at work for the next few days while we wait to see what the next couple of weeks have in store. With limited leave time and a whole bunch of grading piling up, I'm trying to use these days in between to get on top of some of my work. Addie is feeling much better now. Surgery is really hard on babies so Thurs-Sat were pretty rough. She also had some issues with morphine on Friday that got her banned from morphine for life. So it was really an extremely difficult week. But she's feeling much more like herself now. She's got her nana and plenty of nurses taking care of her today while I am at work but I still hate being away from her. I'm not sure there's any right way to balance a full time job, a baby at home who misses his mommy (and a hubby who misses his wife) and a baby in the ICU who needs me the most. I can't be in three places at once and so I'm always struggling with not being able to be in the other 2 places. Right now I'm trying to prioritize Addie and just do as much as I can still for work and my boys. Max misses me and Addie but has a very special bond with his Daddy and seems very happy. He has like 4 specialists appointments in the next week so while all this is going on with Addie, the world doesn't stop spinning so Al will be taking Max to his appointments. Some of Max's appointments are diagnostic, looking for potential concerns, so it's kinda difficult to move forward in that area when all this is going on with Addie.

We're hanging in there. We laugh and smile and ooh and aah over the adorableness of the babies. We manage to find joy amongst it all. After all, we are hospital veterans and know you have to find the things to smile and laugh about or you will go crazy! We've had visitors, good food, encouragement and tons of prayers and those are all helping as we wait and see what God has in store next for our family. We know that there will be days like these- it comes with the territory of having too very medically complex children- and we know that they will pass and there will be happy easy days at home. Our life is going to eventful and we're just all learning how to ride this rollercoaster. And remembering to be grateful for the blessings. And for today she is alive, she is safe at the hospital, she is smiling and she is so very loved by us and by her nurses and doctors. That's actually a lot to be grateful for.

I feel like a broken record asking for prayer all the time! I can't wait for this issue to pass and be back to happy facebook and blog posts. In the meantime, however, please do continue to pray for us. We cherish the support and encouragement and look forward to sharing our fabulous days with you when this has passed and addie is home again. And we keep all of you in our thoughts and prayers and anticipate the day when we can give back to everyone who has given so much to us.

Cutest Medical Mystery Ever

Thursday, December 1, 2011

Surgery Outcome and Recovery

We were really blown away by the prayers and support for Addison yesterday. It is amazing to see how Facebook can be used to spread prayer requests and enable you to feel less isolated and alone when you are going through something like this. I can't imagine doing this 10 years ago without text messaging and social media- having people check on us and communicate with us all day made the day so much more bearable.

Surgery days are long, especially with afternoon surgeries. Addie was feeling fine yesterday morning and enjoyed visiting with her nurses and playing with her toys. It's always sad for me the few hours before surgery watching her feeling good, knowing that she'll be coming back in a totally different state. Surgery seems to inevitably involve a big step back in order to move forward. So I spend the day kinda dreading that. And of course the nerves of surgery and waiting to be taken back, never knowing exactly when it will be all make for a stressful day. I usually just talk really fast and pace a lot all day which adds to my exhaustion by nighttime!

They took Addie back around 130pm and had her under and ready to start around 230. Around 330, a nurse came in and was like the surgeon would like to see you on the second floor in the post op area. So my mom and i had to head down and we were trying to be like 'i'm sure it's fine and he just wants to tell us himself' but it was crazy stressful. AND we get there and he doesn't come out for like 5 minutes (which felt like 5 hours). But as soon as he walks through, he is smiling and his opening line is 'I love it when I'm right!' The surgeon had been very optimistic for the surgery all along so of course we knew this was fantastic news.

He showed us pictures and tried to explain and it's quite confusing. But basically some of Addie's lymphatic vessels sitting on top of her liver were dilating and pulling dialysate into her chest cavity. There was no hole or tear, just misbehaving vessels. He has seen this in two adult patients and there is a handful of cases reported in literature in adult dialysis patients. There has NEVER been a reported case of a child on dialysis having this complication. We were very blessed that the surgeon happened to have seen it twice before and identified the problem. (and btw, Addie will now be written up in all the medical journals as the first baby to have this happen!) So he burned off those vessels and then basically stapled her lung around them so they couldn't grow. I may upload the pic at some point but basically Addie has 4 metal staples in her lung now. He also scraped her lung with sandpaper to force it to scar and heal and stick to her diaphragm to remove any chance of new vessels forming. I don't think I've explained it very well because I don't understand it overly well myself. But basically the place where the fluid was entering should be fixed but Addie did have her lung stapled and also scraped with sandpaper so as I'm sure you can imagine, she's in quite a lot of discomfort and pain today.

She came back still on the ventilator from heavy sedation. It was a crazy night in the PICU as four kids with gun shot wounds were being lifelined in so there was a lot of debate about whether they should even try to extubate her with all the confusion going on or just sedate her and wait. In the end, she was too awake and frustrated to stay on the ventilator so they took her breathing tube out around 8pm. She's done pretty well with that and her oxygen levels are staying up without much support from a canula. Unfortunately her pain management wasn't handled very well and we had to fight to get her tylenol and she spent the night in a fair amount of discomfort. Her kidney doctors and nurses arrived this morning most frustrated with how the pain aspect was handled and got her some good drugs. So she's finally relaxed now and is asleep.

She will take another couple of days to recover from surgery and will hopefully start feeling better by the end of the weekend. Because we are trying to avoid hemodialysis but also don't want to put any added pressure on her chest by filling her abdomen with large amounts of fluid, we're basically doing very basic low volume dialysis starting tonight. She's been off dialysis since yesterday and isn't allowed to eat as a result. Tonight we'll do some very gentle easy dialysis- way too basic for her machine- so that we can start to give her some food. Although we expect the dialysis to go well, we will all be nervous and praying for it to be successful tonight. Over the next 10 days we will keep her on pretty gentle dialysis meaning she'll need to be in the hospital since her home machine cannot do that. At some point, we will pull her chest tube when it stops draining. It's still draining blood from the surgery right now. Since she has a chest tube and is requiring manual dialysis, she'll be in the PICU for the next week or two. She will presumably have a few days in intermediate care before going home. We don't want to rush but of course are praying for a safe but soon return home.

So we're looking at a reasonable hospital stay but assuming all goes as we think it will, she should go home without any lasting implications for transplant which is really the key. I will continue to move forward with my donor testing which is planned for Dec 20 and by the time I get my approval, she should be fully recovered and we won't have even really suffered a delay. So the fact that we were able to fix the problem and can ensure fluid does not end up in her chest and have managed to do so without hemodialysis and without jeopardizing a transplant early next year is a wonderful miracle and the best outcome we could have hoped for in such a difficult situation.
Al and Max are coming up today and we are very excited to see our boys and to spend the afternoon all together. We would love continued prayers that Addie would not be in pain, that she would heal quickly and tolerate her dialysis. As well as for Al and I as we handle one child at home and one child in the hospital the next couple of weeks. I have to go back to work next week so we'll be relying on my mom and some friends to figure it out. It'll be a difficult couple of weeks so please do keep us all in your prayers.

Tuesday, November 29, 2011

What's Happening With Addie

So on Sunday I noticed that Addie was grunting while she was playing. I always tread this fine line between worrying too much and letting everything concern me and ignoring things because I don't want there to be a problem. So I'm having this whole debate with myself- is she really grunting? Is she just frustrated, constipated, teething, over tired? Now grunting is a huge deal with Addie because it was her first and most telling symptom when she was in congestive heart failure in July. And cardiology told us, grunting is not a good sign.

So I did what any modern age mom would do, I recorded her grunting on my iPhone and sent it to her dialysis nurse and doctor (see iPhones save lives- we should so be in an Apple ad). They thought it most likely to be fluid overload so we put her on some high sugar dialysis and watched her blood pressures and vitals that night. The plan was to bring her in the next day when Dr S was there and could see her and avoid a night in the ER off dialysis. When I saw her before going to work yesterday morning, she was asleep so she seemed fine. I spoke to Al at around 11 though and he said she was grunting still and looking pale and I knew she wasn't good then. My mom picked her up and took her in to the hospital as planned.

As soon as Julie and Dr S saw her, they knew something was wrong. They checked her oxygen level which was around 85 which is lower than it should be, without being critically low. They did a chest X ray and her right lung was surrounded my fluid, basically causing it to not expand. And unlike kidneys where one will do, you really need two lungs! So she was in respiratory distress from fluid surrounding her lung. They put her on oxygen and admitted her to the ICU. All while I was teaching my students about DNA. If I had known how sick she was, I would have taken the day off. But it's a really hard decision for me because I don't have endless days, I am the main worker for our family and I am planning on being out for a kidney transplant later in the school year. So she was with her nana which was just fine. But as soon as I finished teaching, Dr S called me and told me how sick she was. And I had to get there as soon as I could. My friend Shannon drove me in thankfully since I was such a nervous wreck and Eve went to get clothes for Addie and me and brought them up. I was so thankful for their help.

They put a chest tube in Addie which goes all the way into her lung cavity and then they pulled out fluid. They pulled almost 400mL of fluid out of her chest cavity which would be like if you or I has a couple of liters of fluid pushing down on our lungs. No wonder she was grunting! It's actually amazing her body was coping as well as it was in those conditions. She is an incredibly strong little girl.

Everyone- including myself- assumed it was related to her cardio history and we feared that she was back in congestive heart failure. Her heart rate was high, she was requiring a fair amount of oxygen from her canula and looked really sick. It was terrifying. Addie's heart failure episode was the very scariest thing we dealt with in the NICU and we thought it was all about to happen again. I just kept sayin over and over to myself that we got through it once, we'll get through it again. But we also all knew that if she was in congestive heart failure the chances of her transplanting any time soon were out the window.

So it's hard to say if it was relief or fear or disappointment that was more prominent when they pulled fluid and realized almost immediately that is was dialysis fluid. We put dialysis fluid into Addie's abdomen every day and her abdomen is surrounded by a membrane and separated by the diaphragm. Dialysis fluid is NOT meant to end up in your chest cavity. Our dialysis nurse and doctor had never seen a patient with dialysis fluid in their chest. There are complications we know to expect- infections, high blood pressure, anemia, electrolite imbalances. No one ever said anything about dialysate in her chest. Yet there it was- 400mL of it.

While there was some relief that it did not seem to be congestive heart failure (or RSV or any of the other reasonably frightening hypotheses), that quickly went away because we were now in a very serious situation. We can't keep filling Addie up with dialysis now that we know it's leaking into her chest (and we really don't know why-maybe related to lymphatic tissue? maybe a tear or hole?) But Addie has no kidneys and she must be on dialysis. So the dreaded H word came into play- hemodialysis.

There are two types of dialysis- Addie and Max do peritoneal dialysis which uses the placement of fluid in the abdomen to pull water and clear toxins without removing the blood. In hemodialysis, blood itself it removed from the patient and run through a machine that removes excess water and toxins. Seriously if you heard the way people talk about hemodialysis, you would think we were talking about waterboarding. If my life were a TV show, I would have to have an animated black cloud of doom come out every time anyone said the word hemo. The way I understand it is that if you're an adult or even a child, hemodialysis is fine because you have a reasonably large blood volume and you can handle a significant amount of blood being out of your body and in a machine at any time. You'll lose some blood from hemodialysis but again, you've got some to spare. If you are a baby on the other hand, you don't have a lot of blood. So to remove a decent percent of it at any given time and have it running through a machine is very dangerous. The blood loss with each treatment is significant as well. So it's not a good treatment for babies. The way around the blood loss and out of body blood filtering is to give blood transfusions while undergoing dialysis. This helps manage blood volumes.

The problem is that the more blood you expose someone to, the harder it makes to find a compatible donor match for transplant. There a whole long explanation behind that but you'll just have to take my word for it. But 4 times a week blood transfusions are a surefire way to make transplant exceedingly difficult. And certainly a way to make my kidney much more likely to not be compatible. And so while we will do hemodialysis if it comes to it and be grateful that the option is there, it will be a very difficult turn of events for sweet Addie with a lot of short and long term implications.

So that's our dilemma. Need dialysis. Can't let fluid seep into her lungs. Don't want to put her through the risks of blood dialysis. It's a difficult situation we are in.

We have a plan, some hope, though. The cardiovascular surgeon is going to insert a scope or camera into Addie's chest tomorrow and run a dialysis cycle and observe where the water is coming up. He is then going to attempt to essentially repair this by stretching her lung out and scarring it to her diaphragm. Sounds weird to me, too. But it is supposed to basically remove the space where fluid is accumulating. IF it does, we could leave her on her peritoneal dialysis on small volumes that put less pressure on her body (which must be done in the hospital) for a few days and make sure she seems healed and head back to her home dialysis machine.

And if not, well Dr S says we will cross that bridge when we get there but it will presumably involve the black cloud of hemodialysis and a lengthy, as in many weeks, hospital stay. But we are praying we won't have to face that bridge. We are praying, once again, for God to heal Addie and work a miracle in her body and that this surgery will be effective.

For tonight, she's back on her peritoneal dialysis on low volumes and the chest tube is in place to drain out anything that does get in her chest. Last cycle we put 150mL in her belly and we got 4 out of her chest tube. It's obviously not all going there but were it to accumulate she'd be in trouble again. But she's ok tonight. She is tired but she's breathing well now that we removed the fluid, not requiring any oxygen and charming everyone. She's given some nice smiles and we have been so blessed to see some our our NICU friends and felt very supported today.

And tomorrow around 2 we will have surgery. And we could use all the prayers we can get. And all the love and thoughts as well. Surgery is always stressful but it's particularly hard when a lot hinges on an outcome that we really don't know what to expect from. And it's my first surgery without Al here since sweet Max will be on dialysis at home and so Al will be taking care of him. I got to go see them this afternoon and really enjoyed some time with my boys while my mom and mrs becky played with addie here.

We're just going to pray and believe for a miracle for Addie. So please join us in praying for sweet Addie. She's the most delightful, beautiful and loved little girl and we hate to see her go through a really rough few months when we really are just a few steps away from transplant otherwise. So if you have relatives, friends, co workers, random people you see tomorrow that pray, please ask them to pray for Addie tomorrow afternoon. And please if you get a chance, let us know you are praying for her or sending her virtual hugs and love via facebook or text or email ( It will give us encouragement and strength as we wait to know there are lots of people praying for her.
Thank you!

My favorite picture of my princess

Thursday, November 24, 2011

So Much to be Thankful For

A year ago today, I was enormous. Which was pretty impressive as I was only actually 27 weeks pregnant. But I looked HUGE. I didn't know it then but I was about to be put on bed rest and I was less than a month away from having my babies. But a year ago I was just a huge beaming pregnant lady who didn't know a lot of things yet. And now- wow, what a year it has been. But the thing about walking in the valleys and going through things you never thought you could is that you learn a lot about yourself, you learn a lot about who your friends are, you learn a lot about God's goodness and you learn that you have A LOT to be thankful for.

So for Thanksgiving, the 10 things I am feeling especially thankful for this Thanksgiving:

1. A God that still does miracles, a God that still loves little children and a God that cares about the details. We love doctors and we love medicines and we believe both have been crucial in saving our children's lives but first and foremost and above all else, all glory goes to God without whom there would be no wise doctors and no amazing medicines and without whom, we would not have had a fighting chance of making it through this year!

2. Two little people who have more bravery and strength of spirit than any adult I've ever met. Max and Addison are adorable but beyond that they are inspirational. Oh for the heart of a baby who wakes up every day with a huge smile because what happened yesterday doesn't matter. Who waste no time feeling sorry for themselves but have a joy and a determination to enjoy life that teaches me every day how I should live my life. Who are so amazingly perfect that I can't hardly believe they are half me. I am thankful and humbled that God chose us to be their parents.

Max and Addie's first picture together at 2 weeks old- tiny precious babies.

Max and Addie in October- big, beautiful happy treasures

3. A partner to go through it all with. A wonderful Daddy for my babies. I am so thankful that Al puts in every feeding tube and gives every shot (because I can't do so without crying!), I am thankful he spends hours every day making sure we have all the supplies and all the appointments we need. He is so amazing at taking care of Max and Addie. They have a Daddy who loves them so much and knows them perfectly and does everything he can to keep them healthy and smiling. And I'm thankful that we can laugh about things together and that we're not doing this alone. A partner in this journey is truly one of God's greatest blessings.

Al and I getting ready for the adventure of our lives...

Such a sweet Daddy

At baby dedication, our family

4. Selfless Grandparents. For Nana who would come to the hospital every day so I knew someone was holding them while we worked. Who comes over every day so Al can rest and get things done around the house. Who loves Max and Addie like crazy. And without whom, we wouldn't make it. And also, without whom there whom be no adorable smocked clothing and that would be tragic in itself! For Papa, who commuted over an hour every day M-F but would still drive out to the hospital every weekend to see Max and Addie even when they were little and didn't do anything but sleep and cry when new people held them. Even then. And now, he's got a granddaughter who hangs on his every word and who reserves her very best smiles just for him. And for Al's parents- their Marnie and Gigi. I see no way we would have made it through September and October without them! For the diapers they cleaned, the hours they stayed awake, the vomit they bathed off, the dishes and laundry they did, the dinners they made for us. And mostly for the love they bestowed on us and our babies. They got us through our first 7 weeks with Max and Addie home both practically and emotionally and we're already looking forward to the next time they come back!

Addie and her Papa

Max and his Nana

With my parents, Nana and Papa

Max and Addie with their Marnie

With Al's parents, Marnie and Gigi

5. Aunts and Uncles and Max and Addie's Family Fan club- we have had so many visitors come and see Max and Addie from all over the world and it means so much to us. We cannot travel with Max and Addie for a while so to have people come out to us just because they want to meet our babies and show us how much they care has been a tremendous blessing. My brother and Al's brother have both spent a lot of time here and the babies are most besotted with their uncles. Also, both of my grandmothers and ALL FIVE of my aunts and uncles have come from Mississippi or Oregon to visit us and meet the babies. We have loved each of their visits and it has been a tremendous joy to me to share my precious babies with our extended family and to watch them love on them. I feel very blessed to have the families we have.

Max meets his Aunt Debra in July

Max and Addie get to spend lots of quality time with Uncle Lachy in June-July

With Uncle Adam and Aunt Jenny while they are in town

My Gran and Aunt Linda had such a good time with the babies

My mom and her four fabulous sisters- my Aunt Bess, Aunt Coot and Aunt Gayle

My Dad with his brother, my Uncle Mark and his brother in law, my Uncle Dale

With their g-ma, my Grandma Jean, a week after they both were home in August

6. Nurses that held our babies and held my hand through the worst of days. I have said it before and I'll say it again- the nurses we have had have been this amazing source of support and strength and have helped us through everything and we are so grateful. It's not just the awesome nursing care they give but the fact that they have opened their hearts and loved our babies and they have taken the time to support Al and I as well. We adore our NICU nurses and during the worst of times, they made me smile with their stories and always listened. They have kept in touch with us and still support me via texts, emails and visits. And we have a wonderful dialysis nurse now who I text about everything- even our issues that have nothing to do with dialysis. She has enabled Al and I to do what we are doing and she has been a friend to us as well. She loves the babies so much- she tries to steal Addie most clinic visits (but at least as Al says, if somewhere were to kidnap her it ought to be a dialysis nurse!)

With Rebekah, their night nurse, and Lori, their day nurse, in November when they came to see the babies.

7. The very best nephrologist we could ever have asked for. I said before, all glory truly goes to God for Max and Addison's lives but I will give the second most credit to their kidney doctor (and really the whole team of doctors including the neonatalogists in the NICU as well). Dr S is our dialysis doctor and will be our transplant doctor as well. She has done so much to help Max and Addison from giving them IV antibodies (which I know in my heart saved their lives), to helping us time their surgeries to avoid hemodialysis, to helping us to get them home after only 2 months on dialysis, to fighting for us to be able to transplant with her to now, helping us get them kidneys so many months before we ever thought possible. On top of all that, she is optimistic and kind and she gave me hope during difficult days in the NICU and encourages us to see the best outcome in every scenario.

With Dr S at her first ever transplant appointment

8. My friends that support me, make me laugh, give me something to look forward to and never stop listening to long stories about kidneys. A special amount of gratitude to my very best friend Hannah who spent two weeks with us in June. For many months I had no idea when the babies would be coming home and we had a lot that we still had to get through with surgeries and there just wasn't a lot to look forward to. But I looked forward to Hannah's trip every day and that got me through those long days. And she came all the way here and sat with me in the NICU, held the babies and lived this crazy journey with us for a couple of weeks. It was the highlight of my summer. And there is not a crisis we have faced, she hasn't been there for me through. I called her the night they told us Addie had congestive heart failure and she talked me through it and reassured me. She's way too far away physically but she's still always there for me. Likewise, Mrs Becky, my mom's best friend has been amazing. When my mom was out of town recently and we had an audiology appt she came with Al and I just to help entertain the babies during the absurdly long wait and she spent the week me, Al and my mom were being trained on dialysis with Max in his room so he wasn't alone. She's done any and everything she can think of to help support us all. And other friends who have come to the hospital, who have brought us meals, who have made me laugh and just hung out with us. You simply cannot get through something like this without amazing friends.

with Aunty Hannah- we're already counting down to her next visit!

With Mrs Becky in the adorable outfits she got for them

With our special friends the Coxes- I watched these girls grow up and now they are watching mine!

9. My coworkers who make being away from the two most precious people somehow tolerable. I'm not going to pretend that I love going to work these days but I genuinely love the people I work with. I have been so blessed. My principal is so wonderful and has been so understanding and always how I am before asking how my classes are. My colleagues donated more than 20 days of paid leave to me last year after Addie lost a lot of blood in a line replacement surgery so that I could be at the hospital with them despite having run out of days off! My co workers follow our photos, tell us we're in their prayers and make it easier to be there. And for the girls I work most closely with and teach Biology with... well they will always be friends first and then co workers and lunch with them is the highlight of my work day and is something I look forward to every day.

My wonderful friend Shannon who gets me through the work week!

10. The prayers, comments and love bestowed upon us by people we see often and people we haven't seen in years. I just cannot say what the emails, Facebook comments, texts and cards have meant to us. We have heard from people we have not seen in more than a decade who write just to say they are praying for us or just to tell us that our story means something to them. Thank you to everyone who has gotten in contact with us and let us know we are not alone but in your thoughts and prayers. One of the great blessings of going through something like this is realizing how many people care about you. We're thankful for each and every one of you. And thankful that thanks to things like Facebook and email, that we are able to keep in touch with people all over the world from all different chapters of our lives.

So as you can see, we have so much to be thankful for this year. We are incredibly thankful to God for each of these blessings and to each of you for being a blessing to us.