September flew by.

September flew by with all the back-to-school normal stuff... plus a preschool sunflower that finally decided to grow. Ellie was very pleased.

 

the most exciting part of the month was that Ellie learned how to ride her bike minus training wheels! go ELLIE! it was pretty crazy how quickly she picked it up. she decided she wanted to do it on a Friday and by Saturday afternoon she was cruising like a pro. she kept saying, "woo! look at me! i'm so BIG!" i love that kid.

we also had some added fun mixed in. i got M tickets to see BYU play vs Texas at home for his 30th...the game was rained out for the whole beginning but they ended up pulling through, and they even made it on TV! why is it so cool to be on TV? i'm not sure really, but it just is.

 

on that weekend while M was away, i took the girls to the movies and to Six Flags and even made them a lil fancy spaghetti and meatball dinner. we had a really fun weekend together which always feels nice as the mama.

we had another Primary Program! this year's theme was "I am a Child of God." what a simple and pure truth! the program was one of my favorites we've ever had. i love how the gospel is broken down to the basics in Primary - it is so easy to understand...as it should be! Ellie's line was so sweet and pure. it was "I am grateful that Jesus was ressurrected because that means I'll get to be with my baby brother Max again." her pure faith and testimony as she confidently and passionately shared that truth on that day made me cry. i think it made others cry, too! she is such a sweet and tender soul.

Sept also marked the 6-month birthday of Max.
i've said it before, but i'll say it again: milestones are hard.
a six month old baby is so fun. and so big. and so sweet. they have their personality. they interact. they eat real food. they cuddle you and you are their whole world.
and yet our baby wasn't here to experience all of that. i don't think i'll ever get used to these milestones being missed.

i remember feeling overwhelmed with how sad i felt.
i felt frustrated for feeling so sad still. like i should be getting better by then but i almost felt to be digressing again. M and i talked about it one day and he told me something that continues to stay with me- he said, "i think it's important to just let yourself feel what you're gonna feel." it's so true. otherwise you either implode or explode - and neither scenario is good. i guess i just wanted to know how i could grieve and get it over with and i am slowly realizing hat there's no such thing. there's no set way to do it. there's no right or wrong amount of time or window of emotion that you should experience. it's all different for each person. i loved this little quote at the end of the Disney Short, "The Ballad of Nessie" i heard around this time. it said,

"Do not be afraid to cry
It really is ok
Sometimes it is through our tears
that we find a better way."

i love that because experiencing these emotions - these real, literally painful in my chest emotions, has taught me things i really couldn't have learned any other way. the hole that Max has left felt and feels gapingly monstrous. i ache for him every day. i cry for him often. and i think it is through those tears that i am able to find more compassion and love and empathy for those around me. i'm far from who i want to be, but Max is helping me become better - even missing him is helping me become better.

for his six month birthday, we painted pots for Max. i wrote in my journal: "The girls absolutely loved painting pots for Max today to bring them to our place. We spent at least an hour working up designs and using all different colors and paintbrushes. They were so proud of how their masterpieces turned out- and hoped that Max would love what htey did for him. It is so touching watching these beautiful little girls honor their sweet little brother like this. I love it."

we filled the pots with flowers and took them up to our place, where it was a gorgeous evening. we brought big star balloons and wrote him little messages on them and sent them to heaven.

Alice was so sweet - pointing at the balloons and saying, "Yook, Mama! Da balloons are dancing in da sky!" they did look like they were dancing. i loved that. i'm so grateful for these precious little ones that keep me smiling even when it feels like i can't.

i wonder what he thinks on these days. are these days hard for him? or is it just hard because he knows that they're hard for us? i wonder if he gets to come and see the little things we do for him. i think he does. and i hope he knows that even when another 100 half-years pass by, we'll still miss him and love him as much as we did this day when we painted pots, planted flowers, sang songs and had a little dance party for him on his 6 month birthday.

xoxo

May 2013 Flashback - Potty Training, Park Days, Playing, & Planting

May was filled with all the end of year things... and lots of simple at home things too. The simple at home things always seem to be my favorite.

especially when they include another cute bum in the house in undies instead of diapers!

i loooaaattthhheee potty training...but Alice was a champ. she figured it out so quick....even wearing undies in the night with no accidents. hallelujah!!!! and amen. my favorite part of potty-training Alice was how excited Ellie got in the whole process. and how silly they were about it. their new favorite word is definitely "underpants." they think they are so hilarious.

and they are right.

Alice loves loves loves this little bikini and i randomly find her playing in it all the time. she is so funny, this one.

May nights are so beautiful! we love enjoying them with our favorite friends at the park.

these little cuties looovvvvee to garden and plant! we have planted quite an impressive garden this year, all because these little girls were so helpful....and so was Geraldine the Giraffe...Ellie's little stuffed animal friend that she got to bring home from Mrs. Perona's preschool! (Geraldine loved to watch us under the little umbrella that Ellie set up for her)

we joined a baby-sitting co-op with some of our good friends...and our girls LOVE it! they especially love that some of their favorite little girls are in the group. and M and i love getting to have a date multiple times a month! it's a little crazy when it's at our house sometimes, but it's worth the crazy, especially when the crazies are this cute!

remembering Max: the NICU, day 1

oh, the NICU!

(NICU: neo-natal intensive care unit)

before this whole experience, i had a very negative perception of the NICU. it seemed like a scary place where scary things happened. i learned very quickly that it was the complete opposite. the NICU is a place of miracles. it is a room full of babies fresh from heaven, and you can feel the veil so very thin - almost like these babies are all are caught between two worlds. the doctors and nurses are incredibly special people -- and while going to the NICU isn't something i'd necessarily wish for again (i mean, how morbid would that be?), i loved our time and experience there.

right after i got to hold Max, they connected him to all sorts of machines and whisked him away to the NICU within that hospital. while there, they did several assessments and tests, mostly trying to determine why he hadn't been swallowing in utero, to determine which surgeries were emergent, and whether he needed to be transferred to Oakland Children's Hospital for those surgeries to happen (the hospital i delivered at does not perform those procedures and surgeries within their NICU). M went with Max, as did his family members. they did a very good job of keeping me and the rest of us informed. i've never been so grateful for text messaging!

we learned very quickly that Max had a tracheoesophageal fistula. this crazy-long-worded-problem basically meant that there was a blockage that occurred in development which made it so that there was no connection between his throat and stomach -- causing him to be unable to swallow. you cannot live without swallowing (obviously) and so he'd need that surgery as soon as possible ... and so he was immediately being prepped to go to Oakland for that surgery. 

otherwise, in his immediate assessments, they didn't believe anything he was dealing with was life-threatening. i remember receiving the text that said those words from M, and sitting there in my little hospital bed in disbelief and awe. what a little fighter! and while that initial assessment proved to be wrong, i'm grateful for it -- because it allowed us to feel a lot of joy at his birth instead of anxiety and fear of what could go wrong next.

in the meantime, the girls came in my room to see me. there's nothing quite like seeing your other kids after you've had a baby; it's like singing along to a song you already know or putting on your favorite jeans you've had forever or going to your very favorite thinking spot ... it's just comforting in that homesick sort of way. the girls were of course super excited to meet Max -- and so the nurses cleaned me up as best as they could, transferred my heavy-post-epidural body onto a gurney (first time rider, right here!) and we were off to the NICU to see Max together.

Ellie was very skeptical meeting Max. you could tell that all of the tubes, the oxygen mask on him, and wires going everywhere were very concerning to her. what a sensitive lil soul. Alice, on the other hand, kept bending towards his bed and touching him. she wasn't scared one bit, and wanted to give him a "check-up" with the nurse's stethoscope (Doc McStuffins at its best right there, folks).

 {i love this picture of all of us together with Max -- because those moments of being all together were very few that week with the extreme restrictions they have in the NICU in regards to how many people can be at the bedside (only 2 people!)}

 

and then Max was off to Oakland. M went with him. i stayed behind with my parents. that was weird - to be separated from my baby. it's just unnatural, you know? as i guess a lot of this journey has been. it was a long, abnormal night without him there...definitely much different from my other experiences with Ellie and Alice, who were right next to me the entire time. i missed him, and couldn't wait to go see him again.

the following day, i was discharged very early - so M and i were able to get an early start to head to Oakland and see Max. and the weirdest thing -- this little old lady pushed me in my wheelchair out of the hospital. she wouldn't let M do it, saying "you don't want me to lose my job, do you?"

so funny / random. so grateful for the many moments of comic relief we felt throughout anything. after all, "if we couldn't laugh, we would all go insane." -Robert Frost. <----that guy is a genius.

anyway. we got to Oakland and i got the run-down on NICU procedure -- scrubbing for three minutes, gowns, only 2 people per bedside, naming only 4 other adults outside of us to be able to visit Max, breastfeeding/pumping rooms, etc etc etc. it was a lot.

i was so anxious to just see Max -- and when we finally got there to be at his side, i just cried. i think i cried because it felt so good to be with him again. and then i think i cried because i felt a rush come over me that everything wasn't ok. it was a hard moment -- but i brushed it aside because there was no real reason to feel that way.

very soon after, we met the Attending Neonatologist in the NICU that week - Dr. Thomas Eusterbrock. he was this German guy who reminded us so much of President Dieter F. Uchtdorf of the Quorum of the 12 Apostles. his mannerisms were much the same, his accent was the same, and even his stature/appearance was much the same. i actually was very comforted by that for some reason -- because even though i don't know President Uchtdorf personally, it feels like i do...and so it kind of felt like i knew Dr. Eusterbrock too. Dr. Eusterbrock was the person we got to work with most throughout the week -- he'd present us any test results, any assessments that needed to be made, and we made any decisions with him. he was wonderful, to say the least.

the information he first presented us with was that his size was rather small for how many weeks old he was -- and because of this they decided they needed to wait a day or so on doing the surgery to repair his Fistula. they wanted to further assess the condition of his heart and brain, and have a geneticist come and look at him. it didn't seem too alarming at first; we already knew he had been measuring small.

but it was more than that. it was clear to me just by looking at him that there were many abnormalities going on. his head was average size, but looked disporportionately large in comparison to his small facial features and small body. his ears were lowly set, his chest was very small, of course his arms and hands were disfigured, and he was laboring very diligently to breathe. luckily, while all of these things were difficult to see Max have to endure, the doctors and nurses ensured us that none of his complications were causing him any sort of discomfort or pain. his noble, fighting spirit shone through all the beeping monitors and scary wires and tubes. he was calm, sweet, and peaceful.

blessing.

the first evaluation he had was a heart echo. the hole in his heart was very large. it definitely needed to be repaired surgically at some point because of the fatigue and over-pumping of blood into the lungs that would begin happening after the first week of life.

bummer.

he then had ultrasounds of his abdomen and brain. he only had one kidney, and it was very oddly shaped. his brain had even more irregularity than we could tell before -- it was missing the corpus colussum in addition to the cavum septum pellucidum and mishapen cerebellum -- and he also had a cyst on the right side of his brain, of which the implications were unclear for the time being.

double bummer.

finally, the geneticist came in and looked at him. he looked very concerned and flustered. he asked us (as we had been questioned for the billionth time) why we had not done genetic testing early on in my pregnancy. by this point, i wish i would have just had the dumb test so people would stop asking me that. we hadn't done it, ok! it's not like it matters now the reason why! the truth was, the knowledge we could have had from those test would have been very valuable at that point. he didn't really talk to us much, but hurriedly examined Max and then scurried off.

Dr. Eusterbrock came to us very soon after with his diagnosis: he and the geneticist together came to the conclusion that they thought he possibly had a rare chromosomal disorder, either Trisomy 13 or Trisomy 18. this meant that probably had an extra chromosome 13 or 18, which leads to the malformation of many organs and extremeties during development. the prognosis behind either disorder isn't good ... a very, very short life expectancy. now, as you can see, i used the words "possibly" and "probably." this was because there would be no definitive diagnosis until genetic testing was done. a simple genetic test would give the result of Trisomy 13 or 18 by Friday or Saturday. other extensive tests wouldn't receive results for a few weeks. Dr. Eusterbrock made it very clear that whether or not Max had Trisomy 13 or 18, his challenges were severe.

biggest bummer yet.

all of this information was overwhelming. because there were high probabilities but no certainties (a familiar arena to be back in). if Max did have one of the Trisomy's, his life expectancy was very short - and so doing any kind of surgery (though he'd need it to survive) would be invasive to his struggling body...and he may never recover from it. and if he didn't have one of the Trisomy's - we would be losing a valuable window of time where his VSD (the hole in his heart) wouldn't be such a large stumbling block to a major surgery like repairing the fistula. basically -- they told us to decide to do the surgery now or we may lose the window to ever do it.

these kind of decisions are impossible! how do you know with certainty what to do? because one scenario is accepting death as a likely scenario, and the other gives the possibility of life - but also the possibility of welcoming death sooner. M and i are so thankful for prayer, for our families, and ultimately for each other. we decided early on in this whole journey that we had to stick together...that no matter what happened, if we stood united, we'd be able to do anything. i'm so grateful for that because otherwise it would have been so confusing. we really were a team; we'd talk about the scenarios - and looking back, i can see how the Holy Ghost guided our conversations, thoughts, and finally decisions to help us be united.

on that Tuesday, in a teeny tiny waiting room, M and i felt confident to postpone the surgery for a few days. we felt that even though the surgery is normally a very successful surgery for an otherwise healthy baby -- for Max, it was a lot of trauma to put him under. his body would have had an incredible fight to overcome any surgery or operation in a way that a healthy baby wouldn't. not only that, the comfort and peace his little body was feeling would definitely be diminished if we chose to go through with surgery ... we wouldn't even be able to hold him! and throwing all of those facts out the window, surgery just didn't feel right.

we left the hospital that night confident in our decision, but feeling defeated. we had thought nothing was life-threatening ... and yet we realized that Max's life was incredibly fragile. we were going home, yet we didn't have a baby to come with us. we were exhausted and yet this was just the beginning.

and i hate to leave it on this note, but that's the note that we left on that night. it was a tough one. it was so hard to leave his side when things were so unsettled. but one thing i've learned is that sometimes things are just hard - but that doesn't mean that there isn't still goodness to be found. i'll leave you with what i wrote in an email i sent some of our loved ones after that day, because it just sums it up real good:

"we cry but we are ok. we know God is in control. i know Max is ok. and i feel so privileged to get to be with him for these small moments. life is truly sweet - even when it really stinks."

more to come mañana.

xoxo

remembering Max: welcome to earth

on Sunday afternoon, i felt immediate guidance and inspiration come from Elder Cook's blessing.

M and i were sitting on the couch, pinching each other to see if it had all been real (meeting Elder Cook, that is). the girls were playing with Gammy (my mom) outside. and all was calm. it was a idyllic moment.

then my phone rang.

it was my OB, Dr. Wells, calling me from his cell phone, on a Sunday evening. weird, right? well, he began the conversation by telling me he'd been thinking about my labor and delivery all weekend (how thoughtful of you, Dr. Wells, i thought). he said that he had been playing it over and over again in his mind and couldn't help but be concerned about breaking my water. he said that with the immense amount of fluid that i had, he was afraid that when he'd try to break my water slowly, the pressure would be far too great and would rush anyway -- which would most likely then cause the placenta to tare and would then cause Max's heart rate to plummet, which would then mean an emergency C-section. he commented that he'd be wheeling me into that O.R. with the thought in his mind, "could i have done anything to prevent this C-Section from happening?" and he would be able to answer "yes, we could have done an amniocentisis." he then added, "and i just don't want to have any regrets going into tomorrow, so i am recommending you come in tonight for an amnio to draw out some of that fluid to reduce the potential pressure when i eventually break your water."

it was a total curve-ball, but we took Dr. Wells' recommendation -- i felt impressed that evening that Dr. Wells was inspired to call me. but it wasn't until the next afternoon that it became extremely clear that his phone call was a direct result from Elder Cook's blessing..... (things he said in his blessing were in direct correlation to things Dr. Wells communicated with me) and i am confident that Max eventually survived childbirth because of this procedure. in short, i know that Elder Cook's blessing saved Max's life - or more plainly put: gave him his life. how incredible is that? so, so neat.

so we went in for the amnio that Sunday evening at 6 pm. they began the procedure by sticking a needle with suction in my tummy/uterus. they then started drawing the fluid out -- liter by liter. at first it was no big deal. but then it caused some pretty intense contractions to start ... the needle began bending sideways as i contracted, and so they'd have to bend it straight to keep the flow going. it was excruciatingly painful. i did NOT like that one bit. over about 2 hours, they ended up drawing out almost 4 liters of fluid, and estimated that there was at least that much left inside of me (crazy!)...and some pretty intense labor had started. (translation: i was swearing VERY loudly in my brain).  they weren't ready for Max to come quite yet, so they gave me all kinds of meds to stop the contractions....and told me i needed to stay the night (which i wasn't prepared for since they told me i'd be going home that night and coming back in the morning ... ) at that point, i was truthfully grateful to stay since i was kind of freaked out by all of that fluid, and all of the crazy-swearing-worthy-pain i'd been having.

after they settled my contractions down, the rest of the evening was a special one. we had some unique time with Dr Wells that was very touching. he talked to us about life and death - and commented "how wonderful it is that we know what we know -- that this life isn't it." we aren't members of the same church, and yet we are connected in the belief of life after death - and that was so comforting to me. it was also so comforting to hear him give us advice about hospitals and decisions we'd make about our baby. he was so empathetic and compassionate -- a side many people don't get to see in their physicians, and i appreciated it so very much.

once i was pretty stable, M decided to leave to go home and get some toiletries and a change of clothes. i was there all alone, feeling Max move (which i miss, oh so much), and hearing the machines beep and buzz. i was so tired, but i couldn't sleep. it's hard for me to articulate exactly what i felt in that moment -- but it wasn't fear or anxiety. i felt skinny! losing 4 liters of fluid was brilliant.  and mostly i felt relief and excitement. this painful, uncertain experience was coming to an end and arriving to a new beginning. i felt him so close to me that night -- in a way different than inside of me -- more like him sitting by me, and holding my hand. i loved that i could feel his Mighty spirit there comforting his poor ole mama. what a handsome soul. in short: i just couldn't wait to meet him.

the next morning came quickly. and before i knew it, dozens of people were in and out of my hospital room. they started me on the pitocin. i got the epidural (woop woop!). then Dr. Wells broke my water slowly -- and we waited and waited and waited.

more people came. my dad. M's mom. my mom.

more waiting.

and then, all of a sudden, i felt extreme pressure. they had just checked me and i was like a 6. but i was sure there was a baby there ... and so my nurse checked again ... and immediately got on her phone to call my Doctor. Max was coming.

about a gazillion people flooded in the room at that point. Neo-natologists, neo-natal nurses, my perinatologist, and several other people who were complete strangers to me (but wore scrubs so i assumed earned their way there ?? ). and the room was spiritually charged, too. i'm not saying i had visions or anything like that. but you could feel heaven near, almost so close you could touch it.

i only pushed three times -- and then he came, along with a sense of relief like i'd never felt. there was certainly a LOT of fluid still left, which was probably the source of some of the relief ... but it was also a sense of relief, like my body was being released from that part of its role and calling in this process. i'm crying writing about that. i think that's because carrying Max really did feel similar to a calling. it was a sacrifice, and a blessing, just like any pregnancy is. and when he was born, it felt like i was released from that calling, in the same bittersweet way it feels to be released from any calling. the hardest / best calling i've ever had.

initially when Max was born, he didn't breathe...he didn't cry. the girls had both been the loudest cries of the day, so it was a little bit alarming -- but somehow i felt calm. i remember the crowd of neo-natal people working away on little Max. it was tense. and quiet. time felt frozen. they couldn't intabate him because his little jaw was contracted so tightly ... and just when it felt like it had just been too long, i heard a little whimpering cry -- and the tension in the room eased up. Max was breathing on his own -- it was truly a miracle.

i remember crying in that moment. and feeling overwhelmed with joy that he got to breathe - that he got to live. i couldn't see him, but i couldn't stop looking over at all the commotion with the hope that i might get a glimpse.

M and his dad then were able to give him a blessing. i couldn't hear the blessing, but i could feel it. and because of it, i knew Max was going to be ok that day.

and then, after the blessing, the Neo-Natologist wrapped Max up, not connected to anything yet, and let me hold him. i was the only one who got to hold him that day and i was instantaneously overwhelmed with love. my perception of perfection was changed forever -- because in spite of his malformed hands and limbs, he was the most perfect baby i'd ever held with the most pure spirit i'd ever felt. heaven was in my arms, and it was so very sweet. i wish i could relive that moment over and over again. it's one of my very favorite moments of my whole life.

that day then moved into fast-forward with many tests, assessments, transfers, and yadda yadda yadda (translation: i'll go into all of that later). looking back on it now, i'm so grateful for all of our family members and friends who were there for us that day. it was so special having both of my parents there, and both of M's parents and brother there as well...and our girls who came in the room very soon after Max was born. i am so grateful for all of the love and support we felt when he was born, and when he survived. it's like i could feel you all celebrating with us, and that meant so much, and continues to mean so much to me. it was a miraculous day - one that i feel so privileged to have been part of.

xoxo

remembering Max: meeting Elder Cook

telling the story of Max's birth really begins the day before he was born.

it was a beautiful Sunday here in the bay area. i was huge. and achy. and did i say huge? i had just had my final dr. appointment on Friday... i measured 43 weeks (i really was 37), and boy did i look it. proof:

that Sunday, i was sure that i'd have measured 45 weeks if i went in that day. i don't know how things and fluid wasn't leaking out of everywhere. but it wasn't. i just kept waddling along.

as i mentioned a few posts ago, we were having a special Stake Conference where Elder L. Tom Perry of the Quorum of the 12 Apostles was supposed to come and address our stake on that Sunday. Elder Perry came down ill, so we got to hear from Elder Quentin L Cook instead -- which was still super amazing. like i said before, i had never been in such an intimate setting with an apostle before, so it was a very touching, special experience.

{i love the Oakland temple/temple hill! (where we get to meet for our Stake Conferences). it is one of my very favorite places on earth}

but what was even more touching was that we got to meet Elder Cook. in fact, i sat right across from him, with M, his brother, and our girls -- and we ate lunch together! we talked about iPhone apps (hilarious!), the Provo temple, missions, branches in Cuba (mi tierra!), Disneyland (you can see where my priorities are), his grandchildren, and about Max. we told him about our situation with Max, and that he would be born the following day. he asked us simple, yet concerned questions. he was compassionate, and asked us if he could speak to us privately after the luncheon. heck yes we would! you don't have to ask me twice!!

and so, after a Q & A meeting, we got to go into a small room with our close family members (including my mom, M's parents, his brother Jeff, and his grandparents) and talk with Elder Cook. he addressed M and i -- talked to us for a few minutes, and then requested to give me a blessing. it was a sacred experience -- one that i won't elaborate too much on because it is too precious. but i feel like i can honestly say that i know he is a special witness of Heavenly Father and Jesus Christ. i know he knows them personally - and i felt heaven so very near in those moments of my blessing. it was incredible, tangible, and real; and brings tears to my eyes to even think about it. i know that the power of the Priesthood is real -- and i know that the blessing was and continues to be an anchor to our family through this whole journey. i am so incredibly grateful to my Heavenly Father for this experience -- which was a true tender mercy given to us. i've always felt like He knows me and loves me, but since that day, i feel like i can truly, confidently say that He is acutely aware of every aspect of our lives. He cares about the things we care about. He knows what burdens us. He wants us to be happy. He wants us to be like Him. what a perfect Father He is.

after the blessing, i felt armed with strength and confidence like never before. i wasn't afraid. i knew more than ever that God was in control. i hugged Elder Cook, and told him that i'd treasure that day for the rest of my life. and i truly will! what a remarkably memorable experience for my little family - and what immaculate timing to be so empowered before Max's arrival. God is so aware of us all, of this i am certain.

xoxo