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.

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

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.

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 (steph.graham@hotmail.com). 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

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.

Max vs The Helmet and other daily dilemmas

It's been a while since I've written which is partly just because we've had relatively little drama so I haven't needed to write about any dramatic hospital visits or anything which is nice! It's more to do with the fact that being a working mom is pretty much the hardest thing ever right now and I spend all my time teaching, playing with gorgeous babies and sleeping and in my rare moments when the babies are asleep and I'm home, I can't seem to justify sitting and writing a blog post when I'm surrounded by 175 cell posters that need grading. Of course I don't spend my time actually grading them so much as procrastinating and feeling guilty about not grading them. Since I graded 10 posters this morning, I'm rewarding myself by writing a blog post!

It's Thanksgiving week and I couldn't be more excited. 14 weeks ago I started back for the school year. Max came home 3 days later and Addie 7 days later. They've both been home 13 weeks today and I haven't had a week home with them. I've had weekends and Labor Day and otherwise right when they came home is when I headed back to teaching. So I am thrilled to spend my first week home with my babies. I've been looking forward to this for such a long time! We've actually packed up and moved to my parents for the week (which is pretty much like moving to the Plaza for a week so we're loving it!) so it means the babies get to spend more time with their grandparents and uncle this week as well so we're all really happy about that. (the fact that I had to bring the 175 cell posters with me is the only damper on my very joyous week...)

Right now we're in a place where we seem to be doing pretty well with the life or death stuff and we're actually spending our time and effort more on the big picture long term stuff. Which is actually a really good sign and a great place for us to be. I'll be honest, though, it's no less overwhelming or stressful. It's way less intense! But tackling Max and Addison's developmental issues, hearing and working towards transplant can be really daunting. Crises tend to pass more quickly but these are the issues with longevity. So it's awesome that we're able to deal with these things because we spent months whereby ALL our energy was spent on staying alive. But, it feels like standing at the bottom of a mountain and very slowly working our way up some days.

So one of these things we're dealing with now is Max's helmet. So Max was very sick his first two months of life and on some pretty heavy duty breathing support meaning he spent a lot of time in bed. We're thrilled that he loves being cuddled now because his first 2-3 months of life he didn't like to be touched- he was so sensitive and so uncomfortable. Anyway, he tended to lie on one side during this time and as a result, he now has an asymmetrical head. He still, in fact, prefers that one side and still sleeps on it so it's pretty noticeable. The doctor measured it and his head is like 14% asymmetrical and insurance companies consider 11% asymmetry to be significant enough to pay for the helmet so he has a reasonable significant lopsided head! Addie's head is not asymmetrical because she has generally been healthier and she has been fortunate enough to avoid Max's breathing and motor issues which has meant a lot less time in the bed. Now in theory we should have gotten a helmet for Max when he was around 5 months adjusted (7 months old) but that was smack dab in the middle of getting ready to come home. And then we came home and insurance sucks and it took a long time for us to get the helmet. Eventually my mom just called and was like 'look I'll pay you whatever it costs- just give us the helmet!' My mom has an amazing way of making things happen and 2 days later the helmet was ready, and insurance covered it at 100%.

So we're like hooray we have the helmet, ready to get Max's head all round! Well, Max is not nearly as excited about his helmet! I wouldn't say Max hates his helmet but well, if you had to wear a styrofoam helmet all day, you probably wouldn't appreciate it either! It makes him incredibly hot so he's sweaty and that makes him mad and it's no fun. And as Al has pointed out, if it was Addie, we'd probably be more like sorry, you're just going to have to tough it out for your long term gain and leave the helmet on. But Max has his secret weapon- turning blue. So he gets mad over something or another and gets all bothered and hot and then he starts screaming, his airway shuts and he stops breathing. So of course we do what I think any parent would do- we take the helmet off!!! And then we let him cool down and try again later. He wears it for a while and then he gets mad and the cycle starts over. So in the battle of Max versus his helmet, Max always wins! Because cute round head is just not as important as breathing, at the end of the day.

We're still working on our hearing aids- we keep needing to go to new doctors and get new consultations (because again, insurance really sucks) and it's a bit maddening. I told my mom yesterday that it's amazing but I think Addie will get a kidney before she gets a hearing aid. Which considering one is a small electronic device and the other is being cut out of my own body, it really pretty shocking! Addie has started talking though so we are THRILLED about that. Less thrilling is the fact that she sits and says dada dada all the time and despite my many attempts to emphasize the 'm' sound, it seems apparent that her first word is destined to be dada. Which is probably fair given everything Al does for them. Still. But she's making lots different sounds like d, b, f and m so we're pretty excited that her speech is starting to develop even before we get the aids. Max still coos a lot but has not yet progressed beyond vowel sounds but Addie tends to do things first so he may be about to start.

The other big deal thing that life in between crises is filled with is working on motor skills and addressing 'developmental delays'. It's a term I struggle a bit with because for all they've been through, I don't even like to compare Max and Addie to a 'typical' child in terms of development. But they do have some inevitable delays. And Max and Addie are in totally different situations here. Max has significant troubling delays that we're really trying to understand and work on. Progress is slow with Max but we are working with him. He cannot hold his head up and let me tell you a 23 lb baby without head control is HARD WORK! So we're all really emphasizing tummy time and trying to help him build up those muscles. He reaches at things but can't really grab and manipulate things which for a baby who is teething is really hard. Addie is constantly grabbing everything and putting it in her mouth, rubbing her gums with it, etc. Max just doesn't have the coping skills a 10 month old normally does and it really breaks your heart for him. He's adorable and sweet though so he can usually convince someone to hold him and rub his gums for him so he definitely works his charms! He's getting physical therapy twice a week at home and in December will start going to a clinic another 2 times a week for additional therapy. Right now we don't really know why he's so much more delayed than his sister (we are getting more neurological tests run in Dec also) but we're just trying to get him all the help we can.

Meanwhile Addie is also getting physical therapy once a week because although she's impressively only delayed about a month or so from her 'adjusted' age (which given what that little girl has been through is truly amazing!), she's getting help with crawling and standing. Her progress since being home is fast and very rewarding. She's mastered sitting, rolling all over the room, rolling away from her machine, rolling over to and pulling herself onto and attacking her brother, and grasping every small choking hazard possible. She's all over the place and in everything. She can stand for short periods holding on to things and now props herself up on one knee (which actually kinda looks like she's posing for a centerfold and is hilarious). Her physical therapist is worried she could walk without crawling because her standing skills are better than her crawling skills and because she's so efficient with her rolling and gets all over the room rolling super fast that she doesn't have a strong need to crawl. This is apparently very concerning and we are supposed to really want her to crawl. I do. But then again, we've got bigger issues. If she walks on her tip toes later in life because she doesn't crawl, somehow I think I'll be ok with that.

Oh and Addie also has a lazy eye. No idea why- seemingly related to kidney stuff and just one of those things that can happen. So she'll be getting a patch soon. Which is only fair if Max has to wear a helmet! She's young so it should correct itself pretty quickly. Oh and Max's physical therapist wants him to wear these restrictive bike short like things to help with his hips or something soon too. Which lol, I think Max is going to hate baby Spanx and I totally don't see that working but ok.

So I think that's kinda where we are at right now. We're enjoying some time in between surgeries and drama (because as I've mentioned, transplant will be THE BIGGEST DEAL OF ALL TIME... we've been warned a lot...) to work on some of these other issues. We're making sure we give 100% and do everything we can to ensure round heads, straight eyes, normal hips, crawling, head control and speech! Phew, I just wore myself out writing about it all. It almost makes grading the 175 posters lurking in the background seem like a bit of light relaxation by comparison.

Of course it goes without saying but I'll say it anyway- they are worth every single bit of it and more. They are just positively the most adorable, happy amazing little people. There's a lot to take on but the smiles they give us and seeing how well they are doing and seeing how far they have come make it the most rewarding thing in the world.

And to prove this is true, some pictures of my little high maintenance treasures:

Don't be fooled by the smile- this thing is my enemy!

Giving mommy big cuddles and smiles to make up for saying 'dada' first

My Boppy pillow is my BFF

My mommy is obsessed with taking pictures of my teeth!

Thank God for Nana or we wouldn't be able to truly celebrate holidays in style! (and if you think this is cute, stay tuned for their Christmas wardrobe!)

A Happy Week

We had a really fantastic week and we think it's really important to celebrate the great times! There are always things to worry about and you could easily let worrying about the parts of the week that were hard rob you of celebrating the good parts. But I'm making a choice to sometimes stop worrying about everything, stop trying to think through future problems and just take a moment, even a whole day or weekend, to just be grateful for where we are and how much God has done for us.


On Wednesday we found out that our wonderful Dr Swinford personally went back and forth between the medical directors at Aetna (insurance) and Memorial Hermann (hospital) and they actually agreed to 1) let us have our transplants at Hermann and have all follow up care given by Dr Swinford and 2) to waive all our out of pocket costs so that we will pay nothing for the transplants. The first thing is what I have been working super hard at with letters and phone calls and so forth. Ironically, I had all my letters ready to go and be mailed out the next day. So they never even needed my letters- the decision was made without them! Nonetheless I am glad i wrote my letter because it really helped me to work out for myself just how important staying at the hospital was and why it mattered so much to me. The second thing about our out of pocket costs just blew me away- we never mentioned that, I had just assumed we'd be paying our chunk. So it's just a miracle- an amazing feeling that we get to stay at the best hospital for all of us and that we have the added blessing of less financial burden for us.


So the next step is donor testing which Al and I will begin the process for next week, knowing it'll take at least a month and more likely 2. So that's our goal for Nov and Dec. We hope to be at a place in Jan where we know if either or both of us are donors and make an official plan for a transplant date then but presumably in either Feb or March. Dr Swinford is really positive but she is really honest so did talk to us about what a big deal transplant will be- for an infant, and when one parent has just undergone surgery AND when there is another infant still on dialysis in the family. It is going to be logistically at least the hardest thing we've ever done. We'll have more Drs appt at first and lots of new issues over immuno-suppresant drugs etc. So we have been warned and while I'm sure a few months from now I'll be writing a post about how hard it is, right now we just know it is the answer for the future we want for our children. It'll be a lot of short term difficulty but for an amazing long term gain. And transplants will get easier with time. Within a few months after Max has been transplanted, we can go out more, wear masks less and start to feel like a part of the world again. In fact, Dr Swinford said by next Halloween hopefully we'd have kidneys, be at a stable place with our meds and can be out trick or treating! Which definitely brought a smile to our faces!


As if that wasn't great enough news, we also found out at clinic that at least 'kidney-wise' the babies are doing the best they've been doing since we took their kidneys out! Their electrolytes and labs all look great. Addison has been anemic for months and her iron levels are finally what they want them to be. Dialysis is actually working really well for the babies and Al and I are doing a good job with meds, feeds and so forth! And I will say, that is like 95% Al. He's done an amazing job. He is up until 1am every morning because he has discovered the perfect way to give them their iron so they don't throw it and he has this whole system and it's totally working. He's home every day taking care of two very medically complicated babies so to get a report that they are doing even better than when they were in the hospital being cared for every day by doctors and nurses is such a huge compliment to him. I'm so proud of him!


They are also both growing really well. Pretty much like every meeting we had with doctors in Jan-July, they told us they probably won't grow well. Their kidneys leaked protein so they probably won't grow well, they are on dialysis so they probably won't grow well. They need to be on growth hormone since they have no kidneys and kidneys release this so they probably won't grow well. In fact, my mom has now wasted 100s of dollars on buying clothes ahead in a small size because they were preemies with kidney conditions- surely they'd be small?! Well, Max and Addison keep amazing the doctors with their growth! We really watch height closely because weights can be inflated by fluid and what not but... when Max was a couple months old we has in the like 1% for his adjusted age and now he's like 16th% so he actually gaining progress. And Miss Addie is just remarkable with her size as she's somewhere around 70% for height which if you've met Al and I, you'd know is pretty incredible because we are certainly not tall! So they will still get the growth hormone soon (insurance finally cleared it) so they continue to grow while we wait on transplants but they are doing so much better than any of us ever expected!





So it's been a really good week for the babies. They are doing really well at home and I think a year from now we're going to be in a whole new place. And that's a lot to be excited about! And tomorrow we're going to baby dedication at our church and we're really excited that we get to publically thank God for taking such amazing care of them and commit to him that we'll continue taking the very best care of them that we can!

And now an adorable photo from Halloween: