the miracle of max

My heart has been very heavy this week. Another difficult bullet on the checklist has been completed. Maxwell's pathology report from his autopsy was sent to my OB, and we met with her on Monday.

There is nothing more brutal or more humbling than reading a ten page report on the body of your sweet newborn son. We met with Dr. Kang and she sat down with us for almost an hour, talking about Maxwell's anatomy and the things that attributed to his death. She explained his particular defects, patiently answered our questions, and handed me tissues when tears were streaming down my face.

Maxwell was perfect- perfect size, perfect organs, liver, kidneys, perfect brain, little fingers and toes, skin, eyes, lungs- everything except his heart. We thought that maybe he suffered from a heart defect, which he did, but it was much worse than we thought. Maxwell had several heart defects. Several debilitating, fatal heart defects that alone may have been treatable, but combined together left no options for intervention.

When I heard this news I cried and cried and cried and cried with RELIEF. What a RELIEF to know that it wasn't anything I did or did not do, that there is nothing in our genetics to cause this. What a RELIEF to know that even if we had known at our 20-week anatomy scan, that there was nothing that any surgeon or hospital could do. What a RELIEF to know that I enjoyed my pregnancy, and happily looked forward to his birth. What a RELIEF to know that those peaceful few minutes we spent together were not clouded by any pre-existing knowledge of his condition. We did everything right. Everyone did everything right. This just underscores our belief that Max wasn't meant to stay- that our Heavenly Father had a plan for him, a short plan, and he came and did exactly what he needed to do. His defects were so complex that we are not really sure how he survived so well in utero and secondly survived birth and lived for a whole hour.

Really from what I understand, Max had four main problems. He had transposition of the great vessels of the heart, meaning that his aorta originated from the right ventricle instead of the left ventricle. Both his right atrium and ventricle were hypoplastic (meaning small or underdeveloped) with a hypoplastic mitral valve. He was missing all or part of his pulmonary artery, which is the artery that leads to the lungs so the blood can be oxygenated. All of these defects have certain open heart surgeries that can be performed to try to "fix" them, some require the use of a special hole called the ductus arteriosis. When the baby is in utero, there is no need for all of the blood to circulate through the lungs to get oxygen to the body since the lungs are filled with fluid, so the blood bypasses the lungs and goes through this special duct to the aorta and out through the body. When the baby is born, this little hole closes up and the heart and lungs function normally. To repair certain heart defects, a special medicine called prostaglandin is administered at birth to keep the ductus arteriosus open for blood flow.

Maxwell did not have a ductus arteriosus. No medicine could have been administered to buy him some time before surgery. Our doctor explained that she wasn't sure how Maxwell had turned so pink and was screaming so loudly since there was no clear way for his blood to be oxygenated. She said that for his short little life, most of the oxygen in his blood probably came from my body through his umbilical cord before his delivery.

On paper his defects sound really horrible, and they are, I realize that. But for Max they were perfect. Perfectly engineered to survive development, to help grow a big chunky body, to tolerate birth and to live for just a little while so we could meet him, say hello, sing a song and stroke his face. Each defect had a purpose and made it possible for him to live and join our family.

For me, any sort of questions of "what if" have been answered. I feel so incredibly relieved. At the same time, I feel completely devastated again every time I realize that we have lost a child. That our big full term baby died shortly after birth, that there was something wrong with his body and that it was not compatible with life. I'm not sure if that pain will ever go away, I feel like I've cried all of the water out of my body yet again this week. This report answered so many questions, and I'm so thankful that through science we can see the miracle of his little body that was created by God for Maxwell. Knowing this doesn't fix anything, it doesn't make the pain go away, but it helps me to understand the life of my son.

One of a kind, that baby of ours. Special, unique, one of a kind.

Mercies for Max

This is my mother's mom, June. She was a great lady and we were all very close to her until she died in 2002. We used to visit her in the summer and she would pick us up from the airport and shuttle us down to BYU for a sports or music camp. Sometimes she would spend Christmas with us and in the morning she always wore a housecoat with a plastic curler above each ear. She would make us eggs and like a whole loaf of toast with butter from a tub. She was classy and refined and even hosted a program on the radio in the 1940's. She had the most contagious giggle.

June had five children- my mom is fourth on that list, the only girl with four brothers. I always knew that June had some difficult times in her life. Her first son, Craig, died of leukemia when he was five. Two years later, her three year-old Robbie was hit by a car and buried next to his brother. She lost two children in two years.

She and I always had a lot in common, and I always felt a special connection to her like we were kindred spirits. She and I like the same pie, warmed up and a la mode. I have her curly toes and meaty hands.

For weeks after Maxwell died, I had trouble sleeping. Being awake was like a bad dream- sleep was a relief from that, but it was hard to clear my mind long enough to actually fall asleep. One night I dreamed I was with Grandma June again. We were in our old El Vista Street house where I grew up. She was in the kitchen with me, in her housecoat and fresh hair and pink round fingernails. We were baking. She knew I was sad. I don't remember much else of the dream except that she said to me, "Well, I sure do miss my girls but I've got all the boys here."

I have no doubt that Grandma June is tending to Maxwell for me until I can get there. My boy and her boys. I never talked to her in depth about losing her children, and now I wish I could call her up and have a good long talk. We are part of the same club, she and I. Of all the women I know, she is special to me and it brings such comfort to know that she is on the other side with Max. Sometimes I look for Max in the world around me, and sometimes his little messages come in my dreams. Tender mercies.

Three months have come and gone, and not a day goes by that tears are not shed missing that baby of mine.

the one where I turned 30

This week we celebrated my thirtieth birthday. Thirty sounds old. I don't feel old. I feel like a kid playing house most of the time. I have a mortgage payment, I have three beautiful babies, I'm a college graduate... and now I'm thirty and officially a grown up. I guess thirty-something just sounds a lot older than twenty-something.

The day before my birthday was really really hard. I spent the morning picking out granite and looking at fonts for Maxwell's headstone. There are surprisingly a lot of details to consider, you never think about this stuff until there is a big book in front of you with one zillion options. Our meeting was held at a mortuary, and it brought me back to the day we held Max all swaddled up in his white clothes and said our earthly goodbyes. The rest of the day I just cried on and off at the drop of a hat. I kept thinking THIS IS NOT MY LIFE. Ugh. I can do hard things.

Wednesday was a much better, happier day. So many people made me feel special and remembered my birthday. We went swimming all morning, had a nice restful nap time, and went out to dinner before yet another session of swimming. What can I say, we love swimming. (Let's be honest, moms love swimming because it tires children out. And we can simultaneously work on our tan.) We continued the party on Thursday with more swimming, family night at burrito bandito, and cake at Moms. If this sounds familiar it is probably because its sort of what we do every year. I'm a creature of habit and on my birthday I like my favorite things and those include my peeps, burritos, and cake. Sometimes a nap.

Lincoln's gift to me, falling asleep on my shoulder post swim. It is one of my most favorite things. 

Ready for dinner.

vanilla vanilla with vanilla.

does your mom get out all your old pictures? mine does. it's the best.

The answer to "what are you eating"

This picture cracks me up, the kids love to pretend I'm a horse and we all sit on one giant noodle and gallop around the pool. Linc thinks my straps are reigns. So far it's funny every single time.

If you had told me at age twenty what the next ten years would bring me, I wouldn't have believed you. Some things brought so much love and joy, and others proved to be some really soul shattering trials. I'm thankful for my thirty years and hope when I turn forty I can look back and appreciate the decade of my thirties. As my mom would quote: "Grow old along with me, the best is yet to be." -Robert Browning

tea party with our "cousin sisters"

Last week Isabelle had a fancy tea party for the lady cousins that were in town. And also, Lincoln.

When we made our summer bucket list at the beginning of June, she came up with this extravagant idea to host a tea party complete with cookies and dress ups and "reservations." So she made some "reservations" (invitations) and sent them out. She helped me pick out decorations from our stash, set the table with real "breakable plates." Everyone came in their fanciest attire.

I should note that I was not invited to this party. She wanted it to be a "drop off party" like for big girls, where the parents drop the kids off and don't stay. We compromised that I could attend the party as the food server. I really didn't think this would start until like, age fourteen when she will want me to drop her off around the corner from the movie theater but oh no. She is four. Wanted me to drop her off at her OWN HOUSE and then leave.

Anyway. Morgan made some fancy cookies and we had treats and sandwiches on white bread and watermelon (though literally no one ate that.) They clinked cups and discussed the weather in their finest english accents.

Madilyn with Quinn, Iz, Kira, Margo

Grandma always looks legit.

I want to play with Margo's hair always.

Quinn being insanely adorable. With measuring cups.

Morgan and Margo were here the whole month of June since JR had a big intensive study program away from home. We got so used to them being around and now we are just really sad sad sad when they aren't at Grandma's to swim. Lincoln and "Marmo" became best little buddies, just followed each other all over the yard all the time. They are basically the same size and it was so cute for him to have his own little pal.

this is an end table. also doubles as a cage.

Iz and Margo at Turtle Bay

SO CUTE.

Our last day together was the 4th, so of course we had to coordinate. Actually I was surprised we could find dresses from size 1- size 7/8! Thanks H & M!

It is my greatest wish that someday all of my siblings and their families can build houses all next to each other so we don't have to live states apart. Everyone move here already! Sheesh.

summertime

It's 115 today. Too hot for anything, I think. We've been working on our summer bucket list together and these two kids keep me busy.

Lincoln is 2 1/2 now- but it feels like he is older. Maybe because he insists on doing everything that Isabelle is doing. Isabelle insists on doing everything Madilyn is doing so it's like a group of pseudo-six year olds.  As always, he is very opinionated. Dislikes pants. Refuses to ever share his toddler bike. We've had to put his sleep sack on inside out because he kept unzipping it and proclaiming nap time was over when in fact it was not. Go to sleep. Once I pop him in his crib he throws his arms up and asks for a hug because he knows I'm a huge sucker and will pick him up again. Often lets me cuddle and hold him even though he is so big, and for that I am so thankful. He still has his three paci's in bed, and you can see the grey owl in the above picture... it's his "olivia." He sleeps on it like a pillow and wants to carry it around a lot.

His sentences are becoming clearer and it's getting easier for him to communicate what he wants or needs. Says WHOA a lot. Mimics what we say or what Izzie says. My favorite thing he says is "no sank you NO SANK YOU" like when I am forcing him to brush his teeth, or get dressed, or present a pile of food that is less than satisfactory. NO SANK YOU he says, the perfect combo of polite and insistent. If I'm talking to Isabelle he always answers "me too!" except it sounds like "me too-ay!" Morgan thinks he was really born in France and needs a tiny mustache and a beret. He says "ok" all drawn out like "oh tayyyyyy" and kind of hangs his head in defeat. Randomly he will see me and say "heyyyyyyyy mama" like he is keeping tabs on me. Linc is sweet about baby Max, always wants to go to "bay max park!" or look at my locket. He always says "miss you max! luv you!" and of course I cry. Brothers.

Isabelle is four going on fourteen. SASS should be her middle name. But also sweet and thoughtful. She was SO excited to have baby Quinn here for a week- she wanted to hold her and feed her and pick her up and drag her around the house. (Sorry sabs.) It breaks my heart a little bit because she was so excited for us to have a new baby in the house, and I know she would have been such a good helper. Someday she will be, it just feels so far.

Recently she shot up a whole bunch and needed new clothes. I reorganized her closet so she can reach everything and now she insists on picking out her own outfits. It's always fun to see what she has put together, and if in fact she can leave the house wearing it. Isabelle and I have been reading Charlotte's Web during nap time and we are just about through it. She is constantly asking me if Wilbur gets eaten for Christmas. I'm so torn over school in the fall- we have transitional kindergarten here for children who will turn five before the end of the year. She qualifies and would probably do great! It's exactly like kindergarten though- five days a week, full days until almost 2:00. It's a big jump from doing a preschool two days a week for three hours, you know? She is smart and catches on quickly, I'm sure she would love it.... I think I'm dragging my feet because 1) I don't want to be tied to a school schedule already! I know I will be eventually but she is only four. And school gets out exactly during Lincoln's nap time. Awesome. 2) Lincoln will miss her. Not a good enough reason to keep her home but still. They are best friends. 3) Uh she is four and my baby forever so basically she can't go anywhere ever. I'm teasing. (60/40).

Isabelle is a chatter box, always thinking ahead. She asks me, "whats today" so she can get the schedule in her mind. When she is talking about "last night" she calls it "the day before tomorrow." That one is my favorite. Comes up with some great ideas and says, "I was thinkin...." or "I have a gweat idea!" then proceeds to tell me some situation where she can live with Madilyn forever. Actually she wants to have "drop off parties" all the time where the parents drop the kids off and the kids stay and play. Our special tea party last week was a "drop off" party and she asked me to drop her off at our house AND THEN LEAVE. Sorry kid, not happening. She says stuff like "oh you are frackin me up" and "mom I am going to freak out" and "yes indeed." Sometimes she talks out the side of her mouth and covers it with one hand like she is telling a secret she doesn't want anyone to hear.

Izzie is always including "Baby Max up in heaven" in her prayers. She talks about him a lot. When I'm sad, she knows it is about Maxwell. She often asks questions about when we have another baby, if we will get to keep him or if he will have to go to heaven too. We were talking about Max's headstone the other day, and why we are putting one on his grave etc and we had the best conversation in the car and I just don't want to forget it.

Me: When we visit Max we can talk to him and tell him things.

Iz: Well... how can he hear us?

Me: He is always near. He can always hear us."

Iz: Ohhhhh, because he has wittle ears.

Me: Yep that's right.

*long pause*

Iz: Mom, what does Heavenly Father look like?

Me: Well, he looks a lot like us. Hands and feet and a body. Maybe a beard, I'm not sure.

Iz: But... he has no shoes right?

Me: (sort of laughing) I don't know, maybe not!

Iz: I heard.....that He gwows!

Me: ummm grows? like get's bigger?

Iz: *rolling her eyes* No mom, GWOWS... like a flashlight??

Me: Ohhhh GLOWS! Maybe he does glow. Yeah probably.

So thankful for these two that really do keep me busy.

 

 

needed two cups/stuff Grandma does

 




 

Mother's day with my babes

 

beauty parlor

 

sumsion curlers for the win/ girls day to san fran

 

"kini bread" as Linc calls it/ forecast for hell