Thursday, April 18, 2013

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.


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.


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 maƱana.



Becca said...

I love seeing all of these pictures! And I love reading about Max, even if it makes me tear up and feel sad that you couldn't have had more time with him. Although, his story feels so miraculous that he lived to meet his family! It's amazing how much you and Mike were led throughout all of this. Love you!!

Kelli Marshall said...

These pictures are priceless. Thank you so much for sharing marce

Jana Weaver said...

What a beautiful writer you are. I'm grateful for all your sharing, even in such a difficult time. All the pictures are so precious. I'm so happy you have these wonderful memories and experiences and such a strong faith.

Torrie and the girls said...

So So PRECIOUS. and what an AMAZING perspective. Thanks M&M

Ashley said...

I don't know you and I don't know if I have ever left a comment before...I think I may have once... but I have followed your blog here and there for a while now and your mighty Max has captured my heart. Your writing, your motherly love for your children, your family unity, your beautiful testimonies of strength and peace at such a difficult time. I just wanted you to know it has all touched my heart. Thank you for sharing this precious part of your life. It truly is so beautiful.

Jenny said...

Marci, I haven't talked to you for such a loooong time, but I just have to say that I love reading your blog and this is all so, so beautiful. You are an amazing writer, and an even more amazing person. I am seriously inspired by your goodness and your faith and your example. You are one incredible woman! Thank you for sharing all this. Even though it doesn't seem fair at all that you only got four days with sweet Max, and my heart aches for what you are going through, I feel like you definitely deserve the privilege of having a son like Mighty Max for eternity. I wish I could give you a great big hug!

Tara said...

Marci I'm so happy that you're writing and sharing each and every moment with us. Not only to make it easier to blog-stalk you but also just to hear your faith and testimony. You truly are an amazing person, and although I definitely knew that before, you are even more phenomenal than I first suspected!