Our Little Cedar Sapling

we’ve been pretty isolated since bringing cedar home. funny that we should feel isolated now that we are out of the NICU. but as we move into the height of cold/flu season it seems nearly impossible to find anyone to hang out with…who is germ-free. we are being really vigilant about this, thus, have had hardly any social interaction for the past two weeks…we actually had more interaction at the hospital with all our wonderful doctors and nurses. can you say CABIN FEVER?

answer yes or no: have you had any cold/flu symptoms within the past week? is EVERYONE in your household currently cold/flu symptom free? if you answered no, then yes – we may in fact let you come into our house. have you gotten your flu shot? no? PLEASE DO. now, do you have any school age children? are you a teacher? have you hugged someone who may have been sick recently? if you answered yes to any of those questions and you want to visit – we may ask you to change into clean clothes before coming over and/or wear a mask around cedar. and we may or may not feel comfortable with you holding her. of course hand washing/sanitizing is a must. yes, it feels crazy. and obviously with this kind of criteria we are pretty much asking to not have a social life this winter – but when you have a baby with chronic lung disease and a compromised immune system, you have to be very cautious. the reality is – we can’t protect her completely and she will eventually get sick. we’re just hoping we can keep her well for several more months. the good news is, we are getting good at this kind of lock down living. cedar gets stronger every day. and spring is just around the corner….sort of.

speaking of spring – we’ve been busy doing some spring cleaning around here…ok, winter organizing. basically getting to the things that had to sit idle for the four months we were living back and forth between everett and seattle. heather has been doing lots of baby holding while i tackle things like cleaning out the attic and basement and making goodwill runs. you see, we had hopes of having a yard sale in september after our wedding…obviously neither of those things happened. and now that cedar is here it feels urgent to purge of things we don’t need. heather goes back to work in just a couple days so i’m trying to get as much done as possible while there’s a second set of hands available.

we’re getting in to a groove. cedar is still unpredictable in her sleeping – sometimes she wakes up hungry after 2.5 hours – other times she lets us sleep for 5. of course we’re tired. but all in all, she is a really GOOD baby. unlike some babies, cedar loves her bath time. when she was in the NICU we called it her spa time because she would literally fall asleep in the bath sometimes – she was so relaxed. i’m happy to report that cedar still loves her spa time:

of course, cedar wouldn’t be a baby without some grumpy time. so, she still has what we call her cranky hour around 9pm. we have found that by laying her down on the floor in her room without a diaper on  – she works through her grumpiness a little faster…we call it her “dance it out” routine. we play a little music for her and she bicycles her legs and swings her hips like it’s nobody’s business…and even though she is still fussing she seems much happier not to mention she tends to wiggle out some of her evening gas.

every day we fall more and more in love with this little sapling. not a day goes by that we don’t feel so lucky to have her in our arms. she has been through so much in just a handful of months and despite it all…she is still one super happy baby.

cedar is keeping us on our toes. we had two nights of 6 hour sleeping stretches. of course, this came after two evenings of 9pm-11pm fussing. we were happy with this trade-off…it seemed like a nice new routine. then, last night cedar slept through her fussing hour(s) and proceeded to wake up every three hours all through the night. really, this is ok as well –  it is normal baby behavior. of course, we’ll take no fussing…although i will say i much enjoyed sleeping 6 hours at a time. each and every day we are reinventing the routine. for now, with heather on vacation from work, we can easily navigate the spontaneity of cedar’s schedule. every day she is growing and her needs are changing.

cedar is beginning to demand more and more food too. cedar’s pediatrician told us that at this point she should be eating about 2-2.5 ounces of milk at every feeding (every three hours). well, cedar wants 3 and sometimes up to 4 ounces. if her bottles weren’t full of rice cereal as an additive for thickening it wouldn’t be too concerning. we shouldn’t have to worry about her weight but does she know how many carbs are loaded in her bottle? funny i know. but really, we don’t want a baby  that we can’t carry or clean out her crevices…right now she’s healthy and pretty proportionate. but this can change rapidly. we know this about her. do you limit a baby’s intake even if she is demanding more? when i say demanding, i mean – cedar throws a serious tantrum when we take the bottle away too early. if we let her eat until she is full she is content. all in all, cedar eating and growing is a very good thing. she is thriving. and she’ll probably be extra chubby throughout her infancy. but after all that cedar has been through, i’d say this is a nice problem to have. and really, who doesn’t love a chubby baby?

happy, chubby little sleeper.

waking up with our whole family in our home this morning was really the best gift we could ask for…and we got it! sweetest. christmas. ever.

our girls.

best christmas ever!

we have a new nightly routine. 9pm rolls around, cedar eats and then spends one to two hours crying. it has been happening for the last several nights. she has been very gassy and still struggles with some constipation  probably due to all of the formula and rice cereal she consumes. i am so grateful that heather has a few weeks off – we have been tag-teaming the crying baby and seem to have endless patience for this baby that is inconsolable. even in the midst of our own exhaustion, there is so much gratitude that we have cedar home. that she is alive and well and in our arms….even if she is crying.

9pm

on another note, last night cedar slept from 11pm until 4:30am. she hadn’t eaten since 9pm and this was the first time she had gone so long without waking up to eat. most people would rejoice in such a long stretch of sleep for everyone but it made me uneasy. this seemed so unlike her and of course i have residual worry from all the time spent in the hospital. i was tempted to wake her but instead chose to trust that it was a growing kind of night. she eventually woke up in her usual hungry rabid state. she ate then proceeded to sleep most of the day. we’ll take it. that sapling deserves to grow.

accept the things we cannot change. we’ve been really good about that since the moment the doctor told us cedar was coming..3 months early. over time we’ve learned to stretch ourselves and let go of so many things that we had hoped for – for us and for cedar. our visions of a plastic-free, hospital-free, trauma-free, disposable diaper-free, formula-free baby faded a very long time ago. for so long i particularly held onto my hopes of being able to breastfeed cedar – even with my low milk supply – i had this idea that i’d be able to at least be able to have breastfeeding as a comfort for her more than anything. or maybe my milk supply would increase exponentially if cedar was actually able to feed on demand. i held on to that hope. it has been my last stronghold.

since the day she was born, i have been pumping several times a day only to get up to 5 mls of breast milk at a time. over the months i have been diligent taking herbs and vitamins and hydrating to increase my milk supply. i wrote down each and every pumping – when and how much. at my peak i was pumping about 30-40 mls per day. to give you an idea of how much that is – cedar now takes about 75mls every three hours. so yes, a lot of work in exchange for the comfort in knowing that cedar was getting at least a portion of a feed of my breast milk. a few weeks ago it all still seemed worth it. then we discovered that she needed her feeds thickened to help with swallowing. formula with rice cereal added for thickening was the safest option for a baby like cedar with a history of intestinal issues. there was talk of trying to do a combination of formula and breast milk if we could thicken it sufficiently but it also became pretty obvious that cedar’s reflux was worse with breast milk. once she went to eating only thickened formula, her events subsided and really she took off. within a week she went from hardly being able to handle 15mls of milk to drinking a whole bottle without any choking or reflux related episodes. within days we were on our way out of the nicu. in some ways i wanted to put on the brakes. while this new feeding plan was the ticket out the door – out of our 4 month hospital stay – i didn’t like it. i wanted to spend more time trying to get creative to see if maybe there was another way to get cedar to safely eat. there must be another way. the truth is, right now, there isn’t. cedar does best and is safest with rice thickened formula. my hopes to breastfeed cedar anywhere in the near future have since faded and i’m realizing now how tightly i’ve been holding on to breast feeding – it is one of the last things i have from what i originally envisioned as a new mama.

breastfeeding wasn’t a priority when cedar was in the hospital – there were so many other things to worry about. surgeries and recoveries and acid reflux and swallowing. bottle feeding was the practice. cedar would nurse in the in between times – it was like our extra curricular activity. we weren’t good at it but both of us seemed to be comforted by it. breastfeeding was never really discussed at rounds and i didn’t inquire much because all signs were pointing to cedar not being able to consume breast milk at all. the sad thing is that we never had a proper goodbye. we just stopped our nursing sessions after she had her swallow study – when it became obvious that the thinness of breast milk was the cause of her choking. even with the few drops i’m getting now, i don’t dare put her to breast – i want her to be safe. 

maybe i just want the acknowledgement. that it wasn’t all for nothing. or maybe that this has been hard to constantly let go of the things i desired for cedar, for our family. i didn’t get the full pregnancy. i didn’t get the birth i had hoped for cedar. i didn’t have my babe in my arms, for weeks on end. we didn’t get the newborn at home-hunkered down-friends and family stopping by oohing and ahhing at our new baby. these are the things i am really grieving.

i stopped pumping last week when we brought cedar home. it was feeling like too much of a burden and discouragement to make time to pump just to get 5 mls of milk that cedar couldn’t have. every day that passes i wonder am i doing the right thing? should i hold on to my milk supply a little longer? maybe cedar will not need thickened feeds soon? maybe she will be able to latch on in the future…what if? then the real question comes, why is this so hard? why do i feel such grief by letting my milk dry up? why do i feel guilty, disappointed and anxious with each passing day that i don’t pump? i used to think that it was because i really wanted cedar to get the antibodies from breast milk. but even when she was getting donor milk i still held on to MY milk supply so she could get MY antibodies. it was the one thing that i could do for cedar when she was so tiny and fragile and confined to an isolette. when i couldn’t hold her – when i couldn’t comfort her…i could sit in her room and pump her some milk – even if it was just a little. once i was able to put her to breast i realized how special that bonding was – it was the one thing that separated me from any other caregiver. it was the one thing that made my bond with cedar special – besides the obvious – that i carried her and birthed her. but even that isn’t so obvious these days. wow. just look at that ego rear it’s ugly head…”it is the one thing that makes my bond with cedar special” – to who? to cedar? to the world? why does it feel like i need to prove my mamahood? if i had to put a finger on why, i’d say that it is because from the start, cedar has never felt like “mine”. like in the way that other mamas talk about their babies…

you see, from the start it felt like i had to let cedar go. i had to completely trust her. i had to trust strangers to take care of her. i had to be ok with whatever outcome may be. i had to leave her over and over again. not to mention, i had quickly gone from hardly pregnant to having a baby and living in another city in a hospital. whether i liked it or not, cedar was on her own path and my role in her life was just one of the many.

now that she is at home – in our home, and i can have all of her –  there is still this feeling of needing more. but i am realizing that it is more of a wanting to get back what feels lost. this isn’t about the breast milk anymore. it is merely about continuing to let go. healing from the trauma of it all. creating a new beginning. accepting what is. believing that nothing was lost. knowing that so much was gained….this whole journey has been so much bigger than we could have ever imagined. even in cedar’s conception it felt like we were making room for a special being to join us in this world rather than simply expanding our immediate family. my relationship with cedar will always be special. but she is not mine. she is yours. she is ours. cedar has taught us that all there is is trust and hope and faith and love. this will be my stronghold.

joy.

happy solstice! the return of light is welcome around these parts. some days i find myself thinking back to august – still feeling the warmth of the summer – enjoying walking the dogs or doing yard work late into the evening light. cedar came on august 14th. those were still some of the hottest days in bellingham. i hardly remember them now. yet there is a longing still to return to those days. spending four months in a hospital will suck the life right out of you. or at least the vitamin d. when we finally stepped out of the nicu just one week ago today, we found winter. we watched seasons change and a tiny baby go from fragile to double chinned stable and strong. it all really feels like a blur at this point. funny how once a time period has passed, it condenses itself into just one memory – all those moments moved into one compartment – in this case, the “nicu” compartment. if i sit here sifting through photos i can unpack my emotions and feel the roller coaster that it was. most of the time all i see is just what’s in front of me. a healthy thriving 8lb baby girl. i’m starting to forget about her fragility. i’m starting to sleep more soundly. i’m beginning to trust her in this new beginning.

our little cedar sapling is thriving. at her first doctor’s appointment today she weighed in at 8lbs 3oz! she has gained 6 ounces since being home. a lot of this rapid weight gain probably has to do with the fact that cedar gets rice cereal added to each and every bottle of formula that she eats. it is the only way to sufficiently thicken her feeds enough to avoid her choking. at some point she will grow out of needing this. but for now, she will be packing in those extra carbohydrates. regardless, we are so happy that she is eating well and growing. our transition home has been pretty smooth so far – all the people and animals are getting along and cedar fits right in. our family is trying to find a new routine living under the same roof once again – with a new little one who demands our attention at least every 2-3 hours for feeding and play times. speaking of which, we had a great morning playing with cedar – she was extra smiley. i think she likes it here.

8lbs 3oz!

Hazel recently shared with me a poem that she had written a few weeks ago for her language arts poetry book. It’s not surprising that Cedar has become the topic of many of her school projects in the past few months. Sometimes we forget just how much Cedar’s early arrival has impacted our 11year old, then she writes something like this….

Maybe the Reason

 by Hazel Rain Carlson, December 2012

That spider was telling us something. Every time its web fell down he would rebuild it right in the exact same place on the window. Be patient, he whispered in the wind. Soon life will come back to you.

Maybe the reason that baby girl came so early was to save her mother’s life. As hard as life became, it would have been so much harder if a member of my family, someone i love more than anything had died. So Cedar came and helped. Little Cedar wanted to be there when the wedding came.

Now it’s almost over. She’s almost home. She stares at her rainbow plastic bug she got from the hospital and it stares back bug-eyed.

I once read a piece of paper. It said “do not give up. the beginning is always the hardest.” I haven’t given up. But i don’t necessarily agree with those words “the beginning is always the hardest.” It’s just not true when you don’t know when the end is. It might be tomorrow, It might be a few weeks. So it’s just as hard.

But she will be home.

Soon she will wear that striped cedar tree shirt.

Home is family.

_______________________________

We are so lucky…and Cedar has the best big sister ever.

the morning after re-entry into the “real” world with a baby at home from the NICU is most definitely surreal. we propped cedar up on her wedge in the co sleeper next to us just before midnight on friday night and attempted to fall asleep.  i didn’t sleep more than a moment at a time…keeping my hand tucked under cedar’s back all night so that i could feel her breathing. this kind of paranoia is pretty normal for parents with the healthiest of newborns so considering cedar’s past, you can only imagine how much more vigilant we feel about keeping a good watch on our baby. i’m hoping that over the next few weeks we can trust her more and more and rest will come easier. last night wasn’t as bad. i did wake up panicked a few times triple checking that cedar was warm and breathing. she has been waking up hungry every 3-4 hours so it really just feels like i’m lightly napping all night. we haven’t done much in the past 48 hours. cedar pretty much just sleeps and eats and sleeps and eats with a little bit of playtime in between. we’ve had lots of cuddling on the couch, and heather and i have taken turns adventuring out in the world for groceries and christmas shopping. it is so nice to be home to enjoy our family during this holiday break. heather has three weeks off as does hazel which means we will all get in lots of quality cedar time and a chance to really sink into a routine with a baby in the house. our animals are doing wonderfully with cedar – the dogs in particular seem to keep a watchful eye on her and give the occasional lick on her head. miraculously, cedar doesn’t even flinch when our pomeranian goes ballistic at people walking by our house. we are lucky. so far, she sleeps through everything! let’s hope it sticks.

cozy weekend sister bonding.

today cedar is 4 months old. to celebrate, we got to put her in the little red wagon that we’ve watched wheel other babies out of the NICU for the past 122 days. today it was our turn to go home. this morning heather and i packed up the hotel room and cedar’s NICU room and said goodbye to everett and all the wonderful nurses, doctors and therapists that we have grown to love. what a bittersweet departure.

cedar loaded up and ready to go…

sound asleep for her first car ride.

cedar slept the whole car ride home…drank a bottle when we arrived to bellingham then slept again…ate again…and is now sleeping again on my chest as i type this. she’s had a big day. there have been so many firsts since walking out the door of the NICU and into our home as a complete family. first breath of fresh air, first sunshine on her face (yes, the sun happened to be shining!), first car ride, first time greeted with dog licks, first exposure to a yapping pomeranian (miraculously, there was no shock – cedar slept through the whole thing!), first cloth diaper, first christmas tree lights, first cat encounter, first living room dancing….the list goes on…

first cuddle on the couch. quimby-the-dog kisses included.

what a wonderful thing to have a babe in arms not connected to anything! this is also a bit nerve wracking. this evening cedar also had her first reflux related choking event. she was just sleeping soundly when she started coughing/choking at home. first time without monitors to tell me what her heart rate was doing or how much oxygen she was getting. i did everything i’ve been trained to do – repositioned her and stimulated her until she started taking good deep breaths again. if i had to guess (because i’ve watched monitors track cedar’s vitals for so long) i’m pretty sure her heart rate dropped from the usual 140 down to about 70, then back up, then back down again then up… probably her oxygen levels dipped into the upper 70s as her color went from pink to not so pink. fortunately, she recovered pretty quickly. unfortunately, this kind of event doesn’t make me want to ever let cedar out of my sight. while she has grown up and out of her big scary events, cedar still has these events and it is hard to say what she might do if nobody was around. i’m not sure how i’ll sleep at night for a while at least…i think i’ll keep my hand gently rested on her chest so that i can feel her every breath.

snuggling after dinner.

what a perfect bundle our little sapling is. we feel so lucky to have a happy and healthy baby at HOME and are so excited for the new adventures to come. after all that she has been through – cedar truly is an amazing blessing. life is an amazing gift that we must not take for granted. our journey with cedar so far has taught us to live each day with wide open hearts – full of trust, love and understanding. in light of the tragedy in connecticut today, we are all the more counting our blessings and holding each other close. sending peace to broken hearts tonight.