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:

10 Months Ago Today- Max and Addison's Birth Story

In honor of my babies being 10 months old today, I thought I'd write about their eventful entry into the world. Now, I have to admit I normally hate reading birth stories because they are always lots of dramatic descriptions of groaning and pushing and heads popping out and always seem way too graphic for me! So rest assured that since my babies were born via C section while I was under general anaesthesia, there won't be a lot of gushing about crowning or anything too awkward!

My pregnancy was in hindsight pretty uneventful. I guess compared to the last 10 months, almost anything would seem uneventful! But for a twin pregnancy, it went rather smoothly. The first 'scare' I suppose was when I was like 18 weeks along and my quad screening came back with an abnormal reading that could have indicated spina bifida. We had to wait like 9 days and go get a level 2 ultrasound and everything looked normal at that. The worst part of that whole ordeal was the 9 days waiting and worrying. The best part was the level 2 ultrasound was when we found out we were having a boy and a girl and that was one of the happiest days of my life. I think often about whether what showed up on that test was related to what was going on with their kidneys. I think that it probably was but given how obscure their disorder is, I don't see anyway someone could have put two and two together. And I am really very glad we didn't know. I would have worried so much for Max and Addison and been preparing for the worst and I am glad I enjoyed those last months of my pregnancy. If you had told me at 4 months pregnant what these last 10 months have entailed I would not have thought we could have handled it. Sometimes it's better just to face things as they come than sit and wait for them to come. So I am grateful for our uneventful pregnancy!

I ended up on bedrest around 28 weeks which for a twin pregnancy wasn't too shocking. My doctor did what is called a FFN test which is a test that indicates a possible increase risk of pre-term labor and the test came back positive twice in a week so I was on reasonably strict bedrest. A week later it was negative again suggesting less risk of pre-term labor so I was moved to moderate bedrest. I was concerned but never super anxious. My doctor seemed pretty optimistic I'd get to 34 weeks and while she was doubtful I'd make it past 36, I was okay with 34. In fact, the day Max and Addison were born I went to a doctor appointment and I was no more dilated than I'd been for a couple of weeks so I left really cheerful and thinking I'd make it at least a month more. I was 31 weeks exactly.

I went over to my parents brand new house that afternoon and felt really tired so I went to lie down. My dad came to check on me and was like 'get up... I want to hang out!' so I rested a bit longer and got up and went to hang out with everyone. I sat down on one of their brand spanking new (like seriously 5 days old) leather chairs and suddenly there was liquid pouring out of me. And my first thought was 'oh no, I have peed on my parents new furniture! oh no!!!' Then of course it dawned on me- my water is breaking! It was crazy and surreal because I really didn't see it coming. We loaded up the car, called Al who was home to come meet us and headed to the hospital. My mom said on the way 'maybe today is the day we will meet Max and Addie' and I was like 'no- it's too soon!'. I got to the hospital and they began this long procedure of checking that it was really my water that broke. They were like are you sure it's not blood or urinw? And I'm thinking- really I do know the difference between water, blood and pee. But anyway- there is a proper order to things. A couple of hours into this whole investigating whether my water broke or whether I really just peed my pants and created an elaborate lie to hide my embarrassment... I started feeling pain. I still was in enough denial that it really didn't dawn on me that I was in labor. I just thought I had a terrible stomachache. By the time they confirmed in fact my water had broken (or more accurately Max's water had broken), I was in a lot of pain and my contractions were coming really closely together and Max was like ready to make his grand arrival. Things happened really quickly at this point and they told me I couldn't eat or drink anything and they had to prepare me for surgery. I was really not a very good patient because I kept asking the nurse if I could just have one more Diet Coke and then I kept begging Al to sneak me one. I think I was just overwhelmed and a bit delirious! At one point Al was sitting in the room eating TWO Kulver's burgers quite cheerfully and I kicked him in to the hall because I was so enraged that he would sit there and enjoy the burgers when I was on food restrictions!

I have very little sense of time but at some point someone came and told me my platelet levels were too low so I'd have to go under general anaesthesia and all I remember was that my this point I was in so much pain I actually said, 'ok, great can you put me under NOW?' and he laughed and said it'd be soon enough. And that is about the last thing I remember. When I woke up, I was told Max and Addison were ok and Al had just seen them. He said they were little but not tiny and they were on breathing machines but that they were stable. I didn't learn all the details about their birth until much later but I know now they had to intubate them both pretty immediately after birth because they weren't breathing properly on their own. And so I think it was God's mercy that I was under general. I think it would have been terrifying for Al and I to witness that. They both responded well once intubated and by the time Al saw them they were looking good, all things considered.

Here are the photos Al took of Max and Addison that night:
















MAX (above) and ADDIE (below)

I felt really groggy when I was awake and I think I just kept talking about wanting ice chips. I was in and out of sleep but frustrated because they didn't want me to come see the babies right away. Finally at like 5am, 6 hours after they were born, I got wheeled in my bed thing to go see them and it was pretty rough because I was so high on morphine that I just got really nausceous from the wheeling down and kept saying 'i'm going to throw up!' It was quite a meeting. But I got to see them and they were beautiful. I remember being scared when I was pregnant of having babies in the NICU because all the wires and cords seemed so scary and sad. But when they are your babies, you just see straight through that and all you can see is how amazing that little baby is. Now when I look back at the pictures I think 'oh they look so little and sick' but at the time they just looked like mine.

I stayed in the hospital until Christmas Day and then I was ready to go home. I was sad to leave without my babies- it was a very emotional few days. On Christmas morning Addie came off all breathing support and we got to hold this precious little baby girl and it was magical. Max actually had a pulmonary bleed on Christmas night which was a super scary awful thing. So it set him back a few days coming off the ventilator. He finally came off the ventilator after about a week and I held him for the first time on New Year's Eve. The perfect end to 2010.

So that was Max and Addison's big entrance. We really didn't have any idea then what was in store for us. We knew they were preemies and we knew it'd be a couple of months before they were term so we knew the NICU would be a part of our lives for a month or two. We had no idea they had a kidney condition- we found that out on January 17. And again, I'm glad for what we didn't know. It was already a lot to adjust to with two little preemies and all the wicked post partum hormones! God has revealed things to us as we're ready and he's still revealing things to us in stages. I kinda wish He was done revealing new things! But while there are still new challenges, there is 10 months of watching his faithfulness, of realizing how incredibly strong Max and Addison are and of seeing that you really can get through things you never would have thought possible.

So happy 10 months old to my amazing babies! 10 months ago we began a difficult journey that has been scary and sad many times but that pales in comparison to the fact that 10 months ago I became a mommy and fell in love with two little people who bring me joy, laughter, and purpose every single day. I'm forever humbled that God chose me to take care of them and so happy that my life changed forever 10 months ago today.

My sweet 10 month olds today:

Transplants- the big bean shaped light up the end of our tunnel

I would be the last person to ever dismiss the extreme importance of the kidneys. An organ you probably never even think about actually does all these incredibly important things. If there were an organ of the week award, I'd be nominated the kidney A LOT. But, as crucial as the kidneys are, I will say there are worse organs to lose! Because it turns out God gave us all an extra kidney. The wonderful thing about kidneys is you can go about your life really well with only one. And while that doesn't particularly help Max and Addie who have none right now, it does help them in the long run because their daddy and I can survive with only one. And that means our big plan is that we'll each be donating one of our kidneys to one of the twins.

Now as soon as I say that, people start firing a million questions at me so I promise I will try and answer the most common ones. First of all, 'are you even a match?'- well, I'm not sure but probably. I am a blood type match to both babies but there will be more specific cross-matching done over the next couple of months. Cross-matching actually has to be done close to the transplant because recieving blood transfusions can change it. But odds are I am going to be a better match that a random stranger so we're just working with that assumption for now. We're less sure about Al because we don't actually know his blood type. Odds are that it's the same as mine and both kiddos (as a genetics major, I can picture Punnet Squares in my head pretty well so I know the odds are in our favor) but when we start our detailed donor testing in the next couple of months, we'll confirm that. So for all of you praying for us we would LOVE prayers that Al and I are both matches so that both babies can recieve a parent donor kidney. I am praying we are not faced with the difficult situation whereby we have one parent kidney and 2 babies (while a great plotline for a made for TV movie, it's not a chapter of this story I want to face). Now we will look into other living donors if Al and I are not matches as we know my mom is a blood type match and have other relatives offer to be tested but we would love to be able to give them that gift ourselves so we are praying we are matches... and would love for you to join us in praying for that.

Next question would probably be 'who gets whose kidney and when???' Our current thinking is that we would transplant Addie sooner as she is bigger than Max, more mobile than Max and has had a harder time with fluid and dialysis than Max. Assuming I am a match, I will go ahead and donate to Addie since I am smaller and so the baby who goes first should really get the smaller kidney. Then we'll allow a few months for me and Addie to heal and fully recover and then transplant Max with hopefully Al's kidney. When exactly all that will happen depends on a lot of things. Size wise we are not terribly far away- the surgeon at our hospital would consider transplanting at 10kgs (22lbs) and Addie is currently about 9.4 (20lbs). Now that's the smallest size possible, not necessarily the 'ideal' which would be more like 12-15kgs (25-30lbs). The next big hurdle is insurance and paperwork and just all the logistical side of things. Which is where we are at currently.


Max and Addison spent 7 months at our hospital in the city and as I've said in a previous post, I LOVE our hospital. And I adore their kidney doctor. She met them when they were less than a month old and has been so positive and optimistic and supportive every step of the way. I think she is incredibly intelligent and she's also warm and personable. So we love Dr Swinford. And she is the head of dialysis patients AND the head of post transplant patients. So if we get transplanted at our hospital, their doctor who saved them when they were small and sick would be the one to follow them ongoingly. The problem is that I have an HMO insurance plan and for some random reason our hospital is in network for NICU and dialysis but NOT for transplant. Which means Aetna wants us to move to Texas Children's and get transplanted there. I have no doubt that Texas Children's is a phenomenal hospital and if that is where we end up, we believe God will have a reason for us being there. BUT, we really want Dr Swinford to oversee the transplants and we want to stay at our hospital. The lingo we are using in fighting this is that 'continuity of care would be in the best interest of the patients'. Which really just means we are emotionally attached to our hospital and we really aren't up for another big change. So we're appealing the decision and it's a big deal. And I'm fighting for the doctor I really believe is in Max and Addison's best interest. We have the financial advisor for Memorial Hermann is fighting for us and our case manager at Aetna is fighting for us and hopefully we'll win. If not, we'll head down the street to the other hospital and believe God knew better than us and that's where we're meant to be.


So that's where we are at. Despite my knowing better than to ever try and plan anything, in my head my plan is that we will try and transplant Addison around March (my Spring Break) and Max over summer. Even though that is my plan, I think it's likely we'll end up being more like Addie over summer and Max a few months after that, just because of all the logistical hurdles we're dealing with. And because they are still little so there's really not a rush. Other that the fact that transplants will be really wonderful for us. It'll give us freedom and will help the babies develop and ensure them overall greater health. It isn't a cure because transplant will involve its own issues- the babies will have to be on anti-rejection meds and we'll have to be particularly careful the first year about public places and travelling as a result. But they won't be hooked up to a machine for 18 hours so it sounds pretty amazing to us.


Another question I get a lot is about how can an adult kidney go in a baby? Well, they used to try and use children cadever (or deceased) donors but they actually found there to be more problems with that. It seemed the rejection rates were higher and the life of the kidney was shorter. While your own kidney will grow with you, a donor kidney would not. So it is actually better to have a full sized kidney so that it can last them into adulthood. Now, their donated kidney will not last them forever. At some point, they will lose functioning of that kidney and need another transplant. But it should last them 10-20 years and maybe longer. So it will give them the chance to grow up and hopefully be young adults before facing that. Which is one of the reasons why we are so keen for a parent donor as it would likely give them longer- more like 15-20 years than 10-15. And even though obviously Al and I's kidneys are bigger than theirs, surgeons are very skilled and do manage to fit it in!

When we first started talking about this idea of donating a kidney it seemed really daunting. I remember Al being so saddened by the idea of me having to go through a surgery on top of everything else. But, for one thing we've watched our babies both have a kidney removed twice and so we can't imagine how we could not face something that they have already so bravely faced. The surgery is done laproscopically and the recover times are relatively short. I would be able to be back at work within 2-3 weeks. The recovery would be easier than a C section and I survived that! The worst part would be that Al or I wouldn't be able to lift things 20-30lbs for about 3 months. Which is hard when you have 20-30lb twins that you love lifting and carrying! So that is why we would make sure there was at least 3 months between their transplants so that one of us fully able to do that stuff while the other is healing. But honestly, even with it meaning surgery and time off work and recovering, I want nothing more than to give one of the babies my kidney. We spend a lot of time wishing we could do more for them and it would bring us great joy to give them the gift of a kidney.

So that's where we are at with transplants. I feel really excited that we are in the process of working on it. I know it's a huge deal- big surgeries and lots of nervousness about who will donate and worrying about rejection and so forth. But for us, it really is the light for us right now. Dialysis is hard and it's limiting and it helps us to know that it's temporary. The future is bright and we're positive about what lies ahead. We know that our lives will never be normal and as I've mentioned before, we are ok with not being normal. After all, no one is! We're all different and crazy in our own ways! But in a couple of years, Max and Addison will have a kidney and dialysis will not be part of our daily life. Max's airway will have hardened and he won't be turning blue. The babies will have hearing aids or implants that enable them to hear. It's going to be a lot of work to get there and it won't always be easy but we're doing everything we can NOW to ensure the best possible future for them.

And in the meantime, we are also enjoying every day now with them. I have been determined not to live longing for the future and completely miss the joys of the present. When the babies were in the hospital, I spent as much time holding them and loving them and enjoying them then as I could. Because those days were precious. They are growing up and my time with little bitty babies is over so I am glad I soaked up those moments. And they are just so incredibly fun and cute and social now and we are loving our time with them at home. Being on dialysis does not stop us from having a wonderful time with them. Yesterday morning Max and I cuddled up on the couch and he cooed to me and smiled at me and we spent an hour just hanging out with each other. And last night while we watched TV, I lied on the floor and played with Addison for hours while she rolled all over the place and blew raspberries and giggled and smiled. We take advantage of every moment of time with them and soak them up. Because yes, the future is bright and yes, we are excited about transplants but we are also loving today.

Some pictures of me loving my babies this weekend...

Tracheomalacia- better known as "OMG, Max is turning blue!!!"

You're probably going to think I'm making it up when I tell you that Max has another completely unrelated rare medical problem. You're going to think I'm just trying to add stuff to make my blog more juicy or that I'm like a crazy hypochondriac mother who invents medical issues! But then if you come spend a couple days with us, you'll start by pointing out to me that Max is coughing and probably make a good joke about he sounds like an 80 year old with emphysema (he does and you would be like the 50th person to say to him 'Max, you gotta give up the pack a day'!) and then we'll try and explain about Max's airway and you'll think ok no big deal and then give us a day or two and you'll be yelling 'OMG, Max is turning blue!!!" and then you'll believe me that in fact we do have a whole other issue we deal with Max!

So from the day Max was born, breathing has been well, a struggle. Both babies were on ventilators for a couple of days from being so premature but Addie was breathing all on her own (or in hospital lingo 'on room air') at 3 days old. We first tried Max on room air or without assistance when he was 2 and a half months old and he finally came off a canula for good when he was just a couple days shy of 4 months old. In between we would try to give him less assistance and he would do great for a while and then he would drop his oxygen stats and start to turn blue and we'd crank up his breathing assistance, There's medical terms for this- bradycardia and apnea- but on the day we moved to the big hospital, one of our favorite nurses Emily who we got to know and love over the next 7 months, had Max and called it a 'Max Attack' and it stuck. So we now had a cute term for when Max would stop breathing but we still didn't understand why. We had lots of tests done including MRI and EEGs and couldn't find a neurological basis for it. The doctors and nurses started to suspect it was more of an airway issue than a lungs issue so when Max was a little over 2 months old he had a bronchoscope where they put a camera down his airway to observe what is going on.

And we got our diagnosis- tracheomalacia which in essence means that he was a floppy airway. Although I normally hate to plagarize and try to put things into my own words, I thought I'd include a paragraph from MedlinePlus Medical Encyclopedia...

"Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth...Breathing problems that get worse with coughing, crying, feeding, or upper respiratory infections...Congenital tracheomalacia generally goes away on its own by the age of 18-24 months. As the tracheal cartilage gets stronger and the trachea grows, the noisy respirations and breathing difficulties gradually stop. Congenital tracheomalacia is very uncommon"

So I think that is a pretty good summary. It has nothing to do with his kidney issues and although probably related to his prematurity, is a very rare condition, even in a preemie. The good news is that, as you can see above, it will resolve itself! No surgeries, no permanent impacts. Which is awesome news since his kidney condition and hearing loss have lifelong implications. You'll also note the paragrph almost cheerfully states it goes away by 18-24 months which if you ask us is AN INCREDIBLY LONG WAY AWAY!!! So for the next year or so it seems, Max's floppy airway is part of our life.

What the paragraph doesn't really do justice to is how dramatic it can be. It makes 'breathing difficulties' sound all casual. The most obvious symptom of his tracheomalacia seems to be his hacking cough. When his airway is closing on him, Max tends to cough it open which produces this really dramatic sounding cough. Any doctor from any specialty who would walk through their NICU room would always seem very troubled by Max's cough... like they were pretty sure he might have tuberculosis or whooping cough and we were just oblivious. Max coughs a lot. He's not sick. He just has a mighty cough. Particularly when he eats. And the cough really is not an issue. The real drama begins when he tries to scream. Max can fuss or whine or even cry a little and he's fine but if he gets really mad and tries to really cry or scream, his airway shuts on him and he stops being able to breathe. His little body goes all stiff and he has this sad mouth open wide like he's screaming but no noise coming out look. And since he's not breathing, he goes from angry red to purple to blue. And trust me, it's scary. People who have to draw blood from him, give him shots, or do anything that angers him and have witnessed this always look petrified when he starts doing it.

Which probably makes you wonder what is he doing chilling out at home with us? Well, Max being home is a wonderful miracle and blessing. There were many times when we had to talk about a tracheotomy or putting a hole in his throat to create an always open airway or about having him stay in hospital until he can go a week without a Max attack (he can go a day or two now but not really close to a week yet!) In the end though, Max's attacks are all about managing them. A nasal canula doesn't really help because if his airway is shut, blowing oxygen is his nose doesn't help terribly much. So all you can really do is get him to calm down. Because if he stops being mad and relaxes, his airway will open back up. So we pick him up and pat his back and try to get him to look at us and soothe him. And most of the time, this works pretty quickly and he calms down. Sometimes he stays mad for longer but eventually just wears himself out and gets this troubling almost passed out expression and will then start breathing. Very rarely he gets super mad, finally passes out and then forgets to start breathing again. Then he have to use an ambo bag and push 100% oxygen in really hard and force his airway to open up and trigger breathing again. This, thankfully, is very rare. It has happened twice since he's been home. Both times because we put a feeding tube down his nose which he HATES. But I will tell you both times were two of the most panicky scary moments of my life. BUT, we did it. We were able to very quickly get him breathing again.

So Max is home because we are actually the best people to help him because he feels soothed by us and because we've seen it happen so many times now, we don't panic (most of the time!) and are able to calmly reassure him and get him to calm down and breathe again without any help. And on the 2 occasions we had to help him more, we are trained to do that and can. So we believe we are the best people to help sweet Max over the next year until he grows out of this. It's just a big deal. Al and I have never left Max with his grandparents and so for now, we aren't able to go out just Al and I because one of us needs to be with Max at all times and we always take his ambo bag and often his oxygen when we go places. We don't drive anywhere alone with him because we want someone in the backseat- just in case. So Max going out is just a big deal. And really like 99% of the time, he's totally fine. But we can't take our chances and leave him with anyone else or just load him in the car without all of that. Lately i've gone a few places- to a baby shower, out to eat, up to school or to a friend's house and just brought Addie. And I feel bad because people are like 'where's Max? he didn't get to come?' and I worry people think I'm favoring Addie by taking her out. It's just that I can't take Max out by myself and so Al has to come too and it's just a bigger deal and harder to pull off. And with Al's mom here, she and Al have been really good about taking Max out on special trips with the two of them while Addie is at extra doctors appointments or with my mom. So we are making sure he still gets to do stuff. It just kinda takes a village with these two!

I'll have to write another post at some point about 'developmental milestones' because it's really a whole different story. But the short version for now is that Addison has some minor developmental delays- she is actually doing really awesome for having been born 2 months early and having lived in the hospital for 8 months. She is hitting targets around her 'adjusted' age (meaning she should have been born 7 months ago so she is developing the skills that a 7 month old has). She's sitting by herself, rolling all over the floor to get to her favorite toys and really trying to crawl. Max is much more significantly delayed. He can push his head up but cannot hold it steady and he can reach at things but is not always able to grab them. We don't really know what the difference between them is or exactly why Max is more delayed. We've had brain scans done and his brain appears perfectly normal so there's no clear reason. His tracheomalacia did mean he was on a lot of oxygen support for his first few months of life and more confined to his bed. He had lower amniotic fluid while in utero and Addie spent her 7 months in my belly kicking Max down and trying to take over. His airway problems mean he uses more energy breathing and he has had periods where keeping his oxygen levels up on his own is difficult. But, for whatever reason, he's just behind where he should be (which is no big deal) and behind where his twin sister is (admittedly, a little harder). But he's got a great new physical therapist who is super positive and really believes in Max and thinks he'll be caught up by 2. And neurology will check on him in a couple more months just so we can keep making sure we're not missing anything.

Oh but sweet Max- if you have had the pleasure of meeting him, you would know he is the most delightful baby. He has the sweetest disposition. Which is awesome because if crying triggers an episode, we are so thankful he rarely cries. He has so many reasons to be grumpy but he's just the happiest little boy. He loves people and he loves being held. He is really the sweetest baby. His sister is equally as gorgeous but fiery and hilarious- totally different personality. Max is our cuddler. And his smile is the most beautiful thing. When I get home every day and he sees me, his whole face lights up. My babies are both miracles (and all babies are!) but oh, if you had seen how hard Max's first few months are... and then see how awesome he handles everything now.... wow. He amazes me. He's got a lot of medical issues but I know God made him perfectly and his body may have its weaknesses, but his heart and little soul are just flawless. He melts my heart.