A Birthday.

A year ago on my birthday, I had the most epic birthday. Ever. I was freshly unemployed after being laid off. I decided to go on a birthday hike by myself and it was glorious. I struggle with anxiety and while I like being outdoorsy, my anxiety often holds me back from doing the things that I do enjoy doing . I went for it and did the most challenging hike I’ve ever gone on.  Since it was a weekday, I actually only ran into one other group each way on the hike and just a handful at the top.  It was a day of active grieving and of looking forward to the future.  I remember crying so hard almost the entire way down that I had to keep stopping to do snot rockets (I know-gross). I’ll never forget a moment of clarity that I had when listening to “Fix You” by Coldplay. I let things wash over me. I made some peace with my body. I forgave myself a bit. I sort of renewed my spirit to prepare myself to try again.

“When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse

When the tears come streaming down your face
When you lose something you can’t replace
When you love someone but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

High up above or down below
When you’re too in love to let it go
If you never try you’ll never know
Just what you’re worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I

Tears stream down your face
I promise you I will learn from all my mistakes
Tears stream down your face
And I

Lights will guide you home
And ignite your bones
And I will try to fix you”

I saw so many signs from Scarlet on that hike. My heart was overflowing. I haven’t had a day like i since as far as connecting with her.  To a passerby I would have looked crazy. I probably was at that point. All I know is that I felt like she gave me her blessing. Her blessing to try again. I felt like I was ready. I felt that I had reached a point in my grief where there was room for more in my heart than my love for her. That my heart had grown enough to accommodate more. I vividly remember taking a photo of myself crying. My grief is a part of who I am, and I didn’t want to forget the moment.

IMG_5005IMG_5008IMG_5021IMG_5026IMG_5035IMG_5037IMG_5039

It was just a truly lovely day. I was so sad to see it end.  B and I went to the pool and then on a whim went to a really nice little restaurant on a small town near some neat waterfalls. We enjoyed a beautiful meal together and then went to the falls. It happened to be a night loaded with shooting stars.

After a birthday wish and a few shooting star wishes (and with the help of ovulation prediction kit testing), we created Gus. It was the best day. I’ll always consider my birthday to be extra special.

IMG_5042

 

Adventure is out there ❤

Advertisements

Kitchen Dance Parties

Tomorrow is the anniversary of Scarlet’s “due date.” Last year was hard. Really fucking hard. We went hunting for peace, found some, and did the best we could. This year is hard in an entirely different way. Like in an I should have been hosting a 1st birthday last weekend kind of way. I saw a girls birthday party at a park we hiked at over the weekend and it was like a dagger in my heart.  Pink streamers and balloons. Who would Scarlet have been?

I used to LOVE kitchen dance parties. They were something that started when my niece was an infant and morphed in to something that was almost an every day thing. It was a stress reliever, a fun maker, a way to take solace in my favorite songs from growing up. I did a kitchen dance party almost every day when I was pregnant with Scarlet. I listened to her songs. I wanted her to know that her kitchen dance parties started in utero. I daydreamed about our kitchen dance parties after she was born. Then we lost her.

I had my first kitchen dance party after her death when my nieces were visiting probably six months after. It happened by accident. It was emotional and joyful and an incredible release. It was reclaiming a part of me that was lost. The joyful part. The part that wanted to take solace in the old me.

I’ve only had a few kitchen dance parties since Gus was born. The first one was sort of accidental. I was listening to a special song and then found myself picking him up, and then we were dancing. The next couple were joining in when he and his Dad were dancing to their James Brown.

Tonight I picked Gus up and we had a nice, proper dance party. The kind that almost made me feel like the old me. The kind where I felt more joy than I felt I deserved. I’m a work in progress. It was hard but felt good.

Grief is really fucking complicated. I’ll never quit wishing that my baby girl could be here with us. I’m sure we would have spoiled her on her first birthday. She would have been served blueberry pancakes on the red “I am Special” plate. I would have given her pancakes covered in real maple syrup for her first sweets in lieu of a smash cake.

I’m going to snuggle her little brother extra hard tomorrow. I’m going to let myself fall apart instead of trying so hard to keep my shit together. She was wanted. She is loved. Gus was wanted. He is loved. Parenting after loss is very complicated. Thinking of my fellow warrior loss Mamas. Milestone anniversaries, due dates, and birthdays are so very hard. I have moments where I tell myself I should just be grateful for my wonderful son. but that isn’t being fair to myself. I’m allowed to be sad. I’m allowed to miss her. The fact that he is here does not change the fact that she isn’t.

I lost so much of myself when I lost my daughter and while I’ve accepted that I will probably never be the old me, I get to be someone better now. I’ve loved more deeply than many people ever will. I’ve experiences the kind of loss that has shaken me down to my very core and has split me in two. I’ve experienced the sort of rebuilding that makes one question every decision ever made. Everything about the way life is lived. I do feel like I live life more deeply now, but for some reason, I do hold myself back from many of the things that used to make me feel truly happy. I suppose a shrink would say it is something along the lines of self sabotage, but I think it is just avoiding things that will bring back memories that I’m not ready to process.

I hope to find myself having more kitchen dance parties as time goes on. It can’t be forced. You can’t will yourself to be joyful. It’s hard to connect with part of yourself that you’ve lost touch with- parts that you’d love to get back because they were the best part of you. I am going to claw like hell to get to a place where I feel like I am deserving of kitchen dance parties. I owe that to myself ❤

Adventure is out there.  More now than ever.

When I Write Your Name

I was hit with an incredibly overwhelming feeling tonight when preparing Gus’ bottle labels for daycare.  I prefer to write his name on a few sheets of labels to make it easier the morning of. I was on my second sheet of writing his first name when it donned on me. I get to write his name. Every day. I get to say his name out loud. To him. To other people. Every. Single. Day.  It was a joyful feeling with an undertone of melancholy.  I don’t journal nearly as much as I used to, so I don’t write Scarlet’s name nearly as much as I used to. I still talk about her often, especially to Gus, but I realized that I don’t say her name every day anymore.  I’m more inclined to refer to her as “big sister.”

I think I’ve been so busy in the trenches of settling in to life as a new parent (to a living child), and now a working mom that I don’t take the time to slow down and process my feelings. I’m taking a moment tonight to reflect on the simple act of writing my sons’ name on his bottle label for daycare.  I would do anything to have double labels to write on each night. To have a 16 month old and a 15 week old’s bottles to prepare each night. I can’t even imagine how many we would have to prepare and wash judging by how many we have just for Gus : ) I would gladly do it.

Anyway, I digress.  The fact is, I suspect that it doesn’t occur to most parents to marvel at the fact that they get to write their live child’s name. I believe I do a good job of cherishing Gus and I know I feel grateful every day for his presence, but in this moment I was truly floored by the fact that he is mine and I am his. For the rest of my life. And that is amazing.

We went through so much. And he is here. And healthy and safe. And I will never take something as simple as getting to write his name on medical and school forms, and introducing him by name to people for granted.  I will continue to shout his big sister’s name from the rooftops for the rest of my life too, but it will be ever so different with Gus.  The first time I saw Scarlet’s name typed by someone else it was in an Excel spreadsheet at the funeral home. I will never forget that moment.

So tonight, I’m watching my baby boy sleep soundly, counting my lucky stars that he made it here safely. That I get to raise him. That I get to be his. Forever. That he gets to be my Gussy bear. And I get to be his Mama bear. At some point after he arrived, he started feeling more normal. He will always be my miracle baby and the novelty of him will never wear off, but I imagine I will go through seasons of life where it feels like he has always been there – that he’s just a part of our family. Nothing to see here; but the fact of the matter is that I have lived and felt the opposite of the feeling I felt to night and I can appreciate his existence in a crazy huge way because of what I’ve been through.

This child has this special chunk of my heart that somehow became his when I was too busy to notice. Too afraid of losing him to see that love was starting to overpower fear. Gus – to quote Bob Dylan’s “To Make You Feel My Love,” you ain’t seen nothing like me yet, kid.  I love you fiercely. And I can’t wait to keep writing your name. I will write it with so much loving fucking flair. With hearts and squiggles. For ever and ever. Because I get to. Even when you are 50 years old.

I’m partial to the Billy Joel version

“When the rain is blowing in your face
And the whole world is on your case
I could offer a warm embrace
To make you feel my love

When evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven’t made your mind up yet
But I would never do you wrong
I’ve known it from the moment that we met
No doubt in my mind where you belong

I’d go hungry, I’d go black and blue
I’d go crawling down the avenue
And oh, there’s nothing that I wouldn’t do
To make you feel my love

The storms are raging on the rolling sea
And on the highway of regret
The winds of change are blowing wild and free
You ain’t seen nothing like me yet

I could make you happy, make your dreams come true
Nothing that I wouldn’t do
Go to the ends of the earth for you
To make you feel my love”

Checking in From Maternity Leave

It’s been a whirlwind since Gus game home! He is a seriously laid-back child at this point; until he is hungry : ) He only cries when he’s hungry, so if we are prepared for “the feed,” we are treated to a relatively fuss-free home. I can count how many times he has cried for any reason other than hunger easily and he seems to be a pretty settled and happy human. I hope he stays that way ❤ I’d be so happy for him.  We had a rough start to nursing from his NICU stay, so the first few weeks at home were focused on a mix of bottles and nursing as I was TERRIFIED to cut over to nursing without the “guaranteed” calories from the bottles that I could track. After a visit to Lactation, I felt much more comfortable and at this point, he nurses for almost all of his feeds except for his one ounce “green bottle” of vitamins and iron, and a bottle overnight as he seems too tired usually to nurse and be full (which resulted in a wake up within a few hours).  He has even had a few nights when he slept from 11 pm to 5 am!  I’d rather him wakeup for the middle of the night feed, as I worry about him not eating- but he is good about cueing when hungry, so I trust him to let me know.  He takes a bottle well, so I’m not worried about daycare eating, but I am going to miss getting to nurse him all day. It has become a relatively good experience for the both of us. And I’ve enjoyed not pumping as much as I had to when I was mostly bottle feeding.

The past eight weeks have really flown by. Everyone says that about maternity leave, and it is so true.  We had my mom visit for a bit and B’s folks were here for a week also.  We haven’t had many visitors except for a few friends, because I’ve honestly just felt like snuggling in at home in our nest without a lot of outside activity.  Aside from some family outings, walks, trips to the lake, and a few times eating out, we have mostly just chilled at home. No Target trips and I’ve tried to avoid outings that will cause a lot of stress.  It’s been nice avoiding germs too. I’m sure he will be exposed plenty when he starts daycare in a little over a week, so I’ve enjoyed my healthy baby.  He needs all of the time he can get, with his preemie immune system.

His ped appointments have gone well and so far he is on track with his growth. He is being tracked for his developmental milestones and so far he seems pretty on track with his adjusted age.

Except for a swim, two grocery trips, a visit to daycare without him, and a few dog walks, I haven’t really been apart from Gus since he came home from the NICU.  I think our time apart at night when he was in the NICU (once I started sleeping at home), has helped me become comfortable with being apart from him because we didn’t get to be together 24/7 at the beginning. The idea of taking him to daycare is just breaking my heart though.  I’m a control freak and I’m really struggling with my anxiety, so I hope that it will be a good experience for us.  I have only been apart for a few times though since he came home, so I need to do more of that.  Last week I was such a wreck leaving him that I was distracted while pulling in to a parking lot and did some major damage to B’s fancy new car from a curb.  It was a wakeup call to me that I need to make peace with the fact that other people are going to watch Gus and I have to control my worrying.

We are managing some nice walks when the weather cooperates and I’m getting pretty good at loading everyone and all of the gear in to the car for outings.  Lou-dog is getting better at walking next to the stroller and Gus also likes baby wearing, so it is nice being able to go on outings by myself and manage everyone ok.

I realized a few weeks ago that postpartum depression/anxiety is setting in. It really caught me by surprise.  I think I was so focused at the beginning with being blissfully happy and just grateful for Gus, that I didn’t notice when I started having a tough time. I’m doing ok and working through it. I think self-awareness is the most important thing. It’s also been difficult adjusting to feeling so ineffective at everything and I’m just trying to let the feeling wash over me and accept that my house may be messy and laundry not done and other tasks not completed, as I’m sure it will just be worse once I return to work.  I’m trying to pay more attention to my needs and am finding ways to process it all.  I’ve been finding myself retreating inwards, and I haven’t been keeping in touch with people as much as I’d like to. I normally find blogging therapeutic and had been struggling to write a post because it’s hard to admit that I’m not just happy and blissed out.

I’m terrified of something happening to Gus. The first few weeks I basically stayed up when he was sleeping to make sure he was still breathing. I still check a few times a day during naptime and in the night, but I would seriously stand over him and watch him breathe.  He wears a Snuza, which helps me a little bit.  Looking back, it was probably unhealthy how I handled nights.  When my Mom visited and kept him overnight, she was so nervous that she basically stayed awake to watch him. I realized that I was truly passing my anxiety on to others, and that was difficult to see. I also realized that the anxiety of him stopping breathing in his sleep prevented me from being able to handle having him all night by myself. At that point, B was taking a “shift” at the beginning of the night, and bringing him over to me halfway through the night.  When doing that, I could sleep soundly for 3-4 hours and then I’d be up for my entire “shift” and be exhausted the next day. Things have been getting a bit better and I’m able to sleep when I keep him all night.  It is truly hard to describe the fear I have about him stopping breathing, SIDS, suffocating, etc.  I realized a few weeks ago that it goes behind normal “first time parent,” worries.  When driving him in the car, I would have the radio off so that I could listen to him breathe. There were times when I’d pull over because I was afraid that something was off.

I’m struggling to make a bedtime routine because I don’t want him to sleep unsupervised, even for a few hours.  One night I used the baby monitor and he went to bed around 8, until I joined him at 10.  I’d like to move his bedtime up and have him in his crib independently until I join him. Right now he hangs out sleeping where we are, and it just doesn’t feel like a real bed time, which is ok now, but not for the long run.

Parenting a live baby after seeing your firstborn die is truly a mind-fuck. There are overwhelming emotions that “normal” parents can’t understand.  I’ll sit on the couch nursing him, staring at Scarlet’s photo and just cry.  I’m realizing how much I missed out on her.  A few more weeks and she would have likely been on this couch with me.  There are so many thoughts that bring on so much guilt.  It is difficult to process.  Gus looks so much like his big sister. I wonder if she would have looked like him : )  I wonder if her personality would have been like his.  I just wish I could have both of my babies with me.  I just breathe Gus in and let everything that he is wash over me.  I’m so lucky to have him. I love every minute I get with him. Every bath. Every diaper change. Even the middle of the night feeds.  When I think about how close we came to losing him, I just panic.  There are memories from his labor and delivery experience that I just have to block out. I am terrified of losing him.  I love him so much and I know that he is healthy and safe, and we observe safe sleeping practices, but when anxiety sets in I’m absolutely destroyed because I know how it feels to lose a child.  This boy is my world, and I just want to hold him forever.  I’m trying to find ways to put my mind at ease and find peace when worry and anxiety set in.  It’s just difficult sometimes to quiet that corner of my mind.  In addition to my cervical insufficiencies,  I had two other conditions working against me in pregnancy as well, including PPROM and a succenturiate placenta.  I’ve been trying to work through the traumatic labor and delivery experience with Gus and making peace with my body. I’m trying to make peace with the fact and accept that Gus will likely be our last biological child. I’m just not sure if I can go through it all again. I know that we don’t have to decide now, but it is difficult knowing that we likely won’t have another baby, when I am enjoying this time with Gus so much.

I’m still anxious as hell, unfortunately. I struggle when other people bottle feed him because he tends to choke a bit as he forgets to swallow once in a while, and my reaction can probably come off as controlling. I’m nervous about whether the daycare providers will be as patient as I am in feeding.  His reflux made us nervous at the beginning, but we have adjusted to the incredible amount of spit up and projectile vomiting.  The noises he made at night used to scare us and now it is just “him.”  I have very specific ways that I care for him and I won’t apologize for being vocal with family and friends when they do something that makes me nervous.  I’m sure that I will quickly be labeled as a pill, but I’m ok with that.  I don’t want to be a helicopter mom, but for the time being, I know what I have to do to feel comfortable with Gus being around other people and I think most people are understanding of why I am the way I am.

I just love being his Mom.  I love caring for him and being his person.  He seem so to have so much joy in his heart.  I’m so happy for him ❤  I hope that he will carry it with him for life.  I hope he is spared the worry and anxiety that plague me.  I am truly enjoying my time with him, despite PPD and PPA.  I have triggers and difficult parts of the day, but for the most part I just love being in a little love bubble with Gus and I could just stare at him all day.  He is a six week old adjusted age, and is starting to interact more with his surroundings. I wish I could have more time with him in this stage before going back to work. For term babies, they normally get half of a maternity leave of this stage. I’m trying to tame the envy I have of moms/babies who get a “normal” start to this life and who aren’t carrying around the difficulty of child loss too.

Now for the fun stuff:

Things Gus likes:

  • Ceiling fans
  • Ocean wave projector on the ceiling
  • Looking at trees
  • Being outside
  • Showing off how strong his neck muscles are
  • The musical stylings of James Brown
  • Kitchen dance parties with Dad
  • Bath time
  • Gus Explores his World book
  • Baby swing
  • Being swaddled

Things that Gus dislikes:

  • Diaper changes
  • Having his feet touched
  • Clothing changes (specifically sleeves)
  • Being forced to bend/straighten limbs that he doesn’t feel like moving (he is stubborn and is like “hey, what are you doing to my leg?”
  • Being hungry (seriously, this kid goes from 0-60)
  • Being cradled like a baby (he wants to be upright so that he can look around)
  • Particularly bad reflux spitups when it comes out his nose 😦

 

Progress over the past few weeks:

  • Gus slept in his crib for the first time last night (In this thing for reflux, but his big boy crib wedge gets here today!)
  • I’ve been letting him nap more on the main level of our house while I do things upstairs.
  • He outgrew the “cuddle cove” insert for his pack and play and will be laying in the actual mattress part.  He’s growing up too fast!
  • He is starting to wear some six month clothes.  He can wear three month separates, but the three month sleepers are getting short.
  • I’m getting less anxious about driving with him.  I used to worry about whether he was strapped in right, if someone would hit us, etc.  Leaving for outings doesn’t take as long because I’m more relaxed.

Goals for the next week:

  • Being apart for three half days next week while a friend watches him to prepare me for being apart at daycare.  I know I should probably do a full day, but I just want to be with him so badly.
  • Putting Gus in his crib to sleep at 7:30 or 8 until his 10 pm feed when I will join him in his room to go to sleep.  We have a good baby monitor but it’s hard for me to let him sleep unsupervised.
  • Waking up at the time I will wake up for work and getting in the routine of having us both ready to go and out the door in order to make it where we need to be on time.
  • Getting back in to a pumping routine and getting him adjusted to having more bottles than nursing (this one makes me sad).
  • Work on Gus’ baby book and photo album once my prints I ordered arrive.
  • Snuggle on the couch and just enjoy my baby as long as I can before settling in to life as a working mom.
  • Starting a daily journal to write about how I’m doing with depression and anxiety and making sure I’m doing the things that will help me though things.

 

I feel like I’m becoming more confident in my parenting abilities. I know that I won’t break him.  I’m trying to trust my instincts and just enjoy this stage as I know he is going to grow up quickly.  I’m hoping to focus a bit more on self-care and my mental health than I have been, so that we can all be happier and more settled.  This sweet boy is so special.  We have an amazing support system of people who love him so much ❤  This kid is so lucky to grow up with our friends and loved ones around him. The weather is warming up here and I look forward to getting outside more and I really want to take Gus to the beach and start doing some easy hikes with him.

IMG_1800IMG_2377fullsizeoutput_1b1cIMG_2463IMG_2488IMG_2578IMG_2587

 

 

Catching Up and Checking In

It’s been a whirlwind over at our house : )  We are settling in well with little (actually not so little) Gus.  He is still in a preemie haze, so we actually have no way of knowing what he *will* actually be like as a baby. He is super sleepy all of the time and has a few alert, wide-eyed periods a day, but mostly sleeps if he isn’t eating.  He does giggle often and he seems to be a happy baby. We are slowly finding a rhythm, while I wouldn’t call it a routine. We are finding our way out of survival mode and I hope to start working on finding a routine soon.  Right now, we are lucky because we can sleep in after a long night, get ready slowly in the morning (B makes the BEST lattes), and just sort of slip in to our day. He is a big eater, which is great, because eating as a challenge for him for his first three weeks or so.  He is insatiable and nursing has been a challenge because he got so used to the bottle in the NICU and he is a lazy eater also and wants to take in as much milk as possible with minimal effort. We have some habits to correct with eating.

We aren’t as much of a mess right now as I expected.  I’m sure it will be tougher when we are back to work. Right now we are staying on top of laundry, managing to get a decent nights’ rest, keeping on top of washing bottles and pump parts, and feeding our selves decent meals.  We even did our first outing the other day and it went great. For the most part, B and I are being kind to ourselves. I am usually the one who is nasty, but at least I’m quick to apologize.  B is doing a good job rolling with my crazy hormones.

I’ve been thinking a lot, and I think that something we have on our side is that we didn’t really have any expectations of what newborn “daze” (hehe get it days=daze?), would be like. I was so focused on just getting Gus here alive that I am pretty open right now and am basically a blank slate as far as how I think things *should* go.  Even in my fantasies about maternity leave, I always figured I’d be standing on the side of the road crying while attempting to breast feed while on a walk or some shitshow like that.  I never set myself up for disappointment envisioning having my shit together or anything like that. Aside from being incredibly anxiety-ridden about Gus’ general health (is he breathing, is he eating enough?, does his reflux cause him pain?), we are actually pretty relaxed.

I think part of it can be attributed to being bereaved parents.  We are so grateful that Gus is here and thankful for the little moments, that a lot of other things maybe don’t cause us as much distress or upset as they may other new parents.  Our journey to parenthood has been anything but traditional, so I suppose my expectations of motherhood, having an infant, and life in general right now vary a bit from “new moms.”  I’m not going to say that the 2:30-4:00 am feed doesn’t wear me out, but I have the moment where I look in to his eyes and see his sister in his face and am just so incredibly grateful. Even for that early morning wake up.

It will be interesting to see what I have to say on the topic in a few months.  I am a naturally anxious person, so I think some of my behavior, tendencies, and thoughts right now are a bit out of character for me.

I do struggle with allowing myself to fall in to a deep sleep. I am terrified of him having an apnea event while I am sleeping. I shouldn’t be, because he wasn’t having them during his “trial period” prior to being discharged and he should have grown out of it by now, but I’m still scared.  The first few nights were terrifying, and since he has reflux and is a loud sleeper, I barely got any rest.  I’ve graduated to using ear plugs which is a huge step for me, because the first few nights I pretty much kept an eye open on him all night.

I am the safe sleeping police, and am so scared of falling asleep while feeding him.  As if I didn’t have enough to worry about, I’m so scared of SIDS.  I unfortunately have met other bereaved parents who’ve lost babies to SIDS and I just know too much 😦  It’s definitely a challenge parenting a live baby after losing a baby.

We decided to reserve the first month just for us.  There’s a good chance that Gus will be our only child to raise, so we are trying to really relish the experience.  B is a really good partner and I haven’t felt the need to call in reinforcements yet.  My mom will come visit after B goes back to work, and then B’s folks will come after she leaves. It will be nice to have visitors at different stages. With Gus being a preemie, I’d rather the grandparents come when he is starting to be more alert too, to make the most of their visits since they live far away. We’ve had one of our good friends over often and we feel so fortunate that we have an honorary Auntie so near to us who will be able to watch Gus for us when we are ready for a date night!  We hope to start having other visitors over soon too! We were instructed by the NICU to try to keep visitors to a minimum the first few weeks home, and we are just needing some time just us, so we haven’t really had anyone over or to the hospital to meet Gus except for my sister and niece and some of the honorary aunties.

I’ve been thinking often about Scarlet.  I see her in Gus, which makes complete sense since they are siblings. It just hits me really hard sometimes.  The more I get to parent Gus, the more I experience what we missed out on with Scarlet.  There’s a strong need to compartmentalize it all.  I would never wish Gus away. It wouldn’t be possible to have both of my babies here at one time.  I deeply miss Scarlet and wish that I could have experienced these moments with her that I am experiencing with Gus.  I am so blissed out with Gus.  I am of course a bit frazzled and nervous, but I am over the moon happy right now.  When I blogged last about bringing Gus home, and all of the emotions washing over me as a bereaved parent, our friend Rachel captured things beautifully and said “It’s all love anyway,” and I keep reciting that in my head.  I feel like I am holding a miracle in my arms and the gravity of that will never be lost on me. I didn’t know how I’d feel after welcoming Gus, and I wish there was a better description than “bittersweet.”  There isn’t really anything bitter about it, so we will go with Kintsugi, , but it is a work in progress.  I’ve been thinking a lot about friends of mine who are their parents’ living child after a loss.  I think about how amazing those people are and what an impact they’ve made to their parents lives, those of their friends and partners, their fields, and their communities.  It doesn’t make it any “easier” in processing the grief of the lost child, but it assists in establishing how important Gus’ presence will be in many lives.  I don’t believe that everything happens for a reason and that’s not what I’m saying, but one of the best ways for me to process it all right now is to think about the Penumbras (link here for definition) in my life and how much they mean to me. I want Gus to always know that while there was an older sibling who lived briefly before him who we love and miss very much, he belongs with us.  It’s just a lot to take in ❤

Back to Gus- we are thrilled to be home from the NICU. We still have a lot to figure out and Gus is still an “easy baby,” right now because his premature brain is still coming together, so he will probably keep us on our toes more in the coming weeks.  We are just so happy.  It was all worth it. It was all so hard.  I’ve been crashing and burning a bit reflecting on the stress and trauma of it all. We could have lost him. It’s still so scary.  It makes me that much more grateful that he is here.  If I had a “rapper name” I think I’d be called “Scratch & Dent.”  I consider myself “damaged goods” of sorts, which is OK 🙂  It’s all par for the course with my life experiences and I think a lot of people can relate in their own way.  I have a lot that I’m trying to reconcile and it helps to process it all when I have a beautiful little baby to look at.  My journey parenting after loss is beginning now, which is a new chapter in my unique story.  I’ve been thinking about all of my friends and loved ones who have experienced a similar journey and it brings me hope that I will hopefully be able to be a good Mom and give Gus what he needs while juggling my own baggage ❤

My friend Michelle made Gus this beautiful hat like Carl’s in the movie “UP!” and we had a photo shoot with it the other day. I love this boy so much. I love him for who he is now and who he will grow to be.  I can’t wait to see what adventures life holds with him in it.

FullSizeRender 20

Adventure is out there!

Semi-circle Pickup Zone

I have been experiencing ALL OF THE FEELS the past few days.  I am seriously blissed out here in room 34 at the NICU 🙂  My amazing Perinatologist’s office requires patients to do a two week PPD check in and I had mine last week.  I was concerned during my pregnancy that I would struggle to connect with Gus. I worried that I would feel like I had “the wrong baby” in my arms.  I’m so happy that we are bonding like we are. It seriously feels like we are in a little love cocoon, even though we are at the NICU and he isn’t in our home and he is attached to wires and on some strict care routines.  My two week PPD check in went well and I was so relieved to be able to tell them that I am feeling wildly happy for the most part.  It sucks not having him home and it is incredibly stressful having a baby in the NICU, but I’m so grateful for my living child and so far I’m not feeling any signs of PPD or PPA.

I have been grieving Scarlet more actively the past few days as well.  She was on my mind heavily while I was in labor and in the days immediately following Gus’ delivery, but I was so focused on him the first few weeks, that I wasn’t taking as much time to actively grieve her as I typically do and it caught up to me the past few days.  I heard “Let it Be” by the Beatles in the car on the way home yesterday and I just had myself a good cry- something I suppose I haven’t had the time or mental energy to let myself do.

“When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom
Let it be

And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom
Let it be

Let it be, let it be, let it be, let it be
Whisper words of wisdom
Let it be

And when the broken-hearted people
Living in the world agree
There will be an answer
Let it be

For though they may be parted there is
Still a chance that they will see
There will be an answer
Let it be

Let it be, let it be, let it be, let it be
Yeah, there will be an answer
Let it be

Let it be, let it be, let it be, let it be
Whisper words of wisdom
Let it be

Let it be, let it be, let it be, let it be
Whisper words of wisdom
Let it be

And when the night is cloudy
There is still a light that shines on me
Shine until tomorrow
Let it be

I wake up to the sound of music
Mother Mary comes to me
Speaking words of wisdom
Let it be

Let it be, let it be, let it be, yeah, let it be
There will be an answer
Let it be

Let it be, let it be, let it be, yeah, let it be
There will be an answer
Let it be

Let it be, let it be, let it be, yeah, let it be
Whisper words of wisdom
Let it be”

 

You don’t magically find peace when welcoming a baby after infant loss.  It doesn’t replace the baby who was lost. It doesn’t make it any easier.  If anything, it is so hard because I’m experiencing all of the things I missed with Scarlet. There is no way to describe it. I have found this headspace where I just wish I could have both of my babies with me.  I am 21 days off from having Irish twins and I know there is just no way that I could have both of my babies, even if Scarlet had miraculously survived.  I’m so very in love with Gus and happy he’s here.  I also happen to miss his big sister so deeply and am feeling her absence now more than ever.  I imagine I will crash hard at some point, but for now, I am finding all of the balance I can find between new baby bliss and missing my baby who isn’t with us.  Basically, it is what it is.  It hits me hard that I didn’t fall in love with Scarlet any less than I love Gus – and I had to say goodbye to her.  It just feels like a punch to the gut when my head goes back to 14.5 months ago when I had to say goodbye to someone I loved so dearly.  It makes me wish a lifetime of happiness to Gus and hopes that he gets to go peacefully at a very old age after I’m long gone.

I’ve had my eye on the prize Gus’ entire pregnancy and now that he is here and I am experiencing him, I know what a prize he is.  He is such a happy baby.  He laughs in his sleep and smiles so much.  He does this thing where he giggles while nursing and it just cracks me up. I wish I could know what he is thinking and what is giving him so much joy. I hope that he gets to grow up being a joyful person.  I hope he misses out on the anxiety that plagues both of his parents.  I hope he is relaxed and easy-going and is a happy person. I hope he connects with nature at a young age and finds the peace in nature that his Ma unfortunately didn’t find until her thirties.

This brings me to the semi-circle pick up zone.  Every hospital has one.  One of my most difficult and raw memories is when B pulled up to pick me up at our old hospital after I had Scarlet.  I’ll never forget that wait. It was terrible I sat there crying clutching my Scarlet-blanket in a football hold as I watched other people milling around the area, many smiling and laughing. I just remember wanting to yell “how can you be happy when my world has ended?!?!”

When I started coming to OUR beloved hospital we are at now (seriously, I am so passionate about the quality of care here- it is the ultimate place of healing) I would focus on the semi-circle pick up zone and tell myself “you are going to leave this hospital with a live baby through that door and B is going to pull up the car right at that pick up zone and put the live baby in that car to drive home to begin life together.”  Every time I came here I thought that to myself.

Unfortunately, every time I came here, I also look over at the seating area to see if there is “someone like me,” waiting for their partner.  Someone clutching a baby blanket wearing the tell-tale face of a warrior loss mama without her baby.  Someone I can go sit with. Someone I can comfort.  I haven’t seen that person yet, and while I know that doesn’t mean that they haven’t done the same terrible and shitty wait/pickup that I went through, someday if I see them, I will be ready to walk over and be whatever they need for them.  When we were in labor and delivery the day I delivered, they told me that parents had liked their blankets from me. I hated thinking about the fact that someone needed them. That babies had died and received my blankets.  I guess I just wished deep down that the blankets wouldn’t actually be needed. I think about those Mamas a lot.

Every time I came here (a few times early in pregnancy and then every week since October and every day for the past three + weeks),  I would make the walk to my clinic, and walk near the elevators that take you up to labor and delivery.  I knew in my heart of hearts that our baby would never come down that elevator and that we would come from the other end of the hospital from the NICU, where we are now.  Thank goodness I prepared myself for that. I never envisioned us making “the walk” from that elevator. Thankfully, I was ready to make “the walk” from the NICU.  It’s going to be a fucking parade.  I am bringing my own confetti. I am buying all of the balloons.  I am going to be beaming when we get to go wait at that semi-circle for the best daddy in the world to pull up in my car with the fresh “Mama Bear” sticker on the window with the car seat lovingly installed by Dad.

I get to have a happy wait by the door.  I get to clutch a live baby instead of a blanket that held my dead baby.  I am so fortunate, I can hardly stand it.  I am giddy at the thought of getting to take my live child home.  I am going to walk out of this amazing place of healing and think that I can’t wait to bring Gus back here to see the people who got him here. The doctors who combined with modern medicine, gave us our live baby to take home.  I can’t wait to hopefully come back here if we ever decide we are up to the challenge of trying for another live baby.

The semi-circle pick up zone of this hospital has brought me so much hope.  I’ve spent more time daydreaming about that one magical drive home than I care to admit.  This hospital has made my dreams come true.  I came here about a year ago so fucking hopeless. I was lost. I was scared. The idea of bringing a live child home seemed so out of reach for me.  They secured Gus with a stitch in October; a stitch that gave him a precious 34 weeks to gestate.  A stitch that gave him 13 whole weeks more than his sister. That gave him the weeks that make a difference between life and death. He may have developmental delays and setbacks, but he is very likely to have a completely normal life.  The care that we’ve received has absolutely blown me away.  From during pregnancy, to the day I went in to pre-term labor, to my emergency c-section and the recovery afterwards, and now in the NICU.

On Gus’ birthday, I look forward to packing a picnic lunch and sitting on a bench overlooking the parking pick up zone.  He may never understand what it means to me. My heart is so full right now.

Losing my daughter absolutely broke me.  Gus is helping to put me back together. Every day I feel like a tattered puzzle with the top layer of paper peeling off which will always have pieces missing- but you can tell what the image is supposed to be and it looks more and more like what it is supposed to be.  I’m not sure I will ever be able to convey that in to words that will truly communicate what it means to me.
Gus is doing really well.  He pulled out his feeding tube and they let it stay out and he gets to eat on ad lib (basically on demand whenever he’s hungry), which is great! He truly is a “grower and feeder” now.  He had an oxygen de-sat event last night unfortunately, which started his “five day” clock over again. He has to go five days without an event requiring intervention, and when he experienced the de-sat, they had to rub his back to stir him and encourage him to breathe.  I’m not too worried about it.  I’d rather him stay here longer until he is truly ready than have him go home and us not realize that he went without the right amount of oxygen.  Maybe parenting him will make me more relaxed? I doubt it, but the last 14.5 months of my life have taught me that we will never truly have control.  I’m learning how to let go and do what I can over what I can control.  He is growing like a weed and has officially grown out of newborn clothes! He has a dresser full of newborn stuff at home which he will likely never wear, unless some of the separates work. He is one tall dude.

We were initially told to expect potential discharge by the end of the weekend, but it is looking more like the middle of the week next week. We will keep everyone posted.

 

IMG_1520IMG_1535

Gus without his tube!

IMG_1622

Adventure is out there ❤

Roller Coaster – The Honest Update

I really thought that Gus would be in the NICU a few weeks and come home.  I spent my entire pregnancy researching survival rates, average lengths of time spent in the NICU depending on gestation of preemie, and planning for the unexpected.

I would have expected a 28 or 32 weeker to have a long NICU stay. I just didn’t expect my 34 and a half week, seven pound preemie to still be in the NICU almost two weeks later with no sign of discharge in sight. I felt so reassured the morning my water broke.  I was almost at 35 weeks. I figured we’d have a few weeks in the NICU and then everything would be great. I keep telling people how hopeful I am that he will be home with us soon. I’m not trying to hide my fears from people; I’m just choosing to share the more hopeful side instead of the worrying side.

I posted something on Facebook today about what a good day Gus had yesterday and that he had been upgraded to a “big boy bed” from the isolette.  A half hour later his oxygen levels starting desaturating and now we are trying to figure out what is going on.  This is a challenge that we thought he’d overcome quite a while ago.  In addition to his other challenges, this is another setback.  I know this is not wise, but I had been clinging o the idea of a discharge later this week or this weekend for some reason.  He’s 36+3 adjusted age right now (actually one day ahead of his gestation), and I just assumed that by reaching 37 weeks in another week or so, he’d be ready. I suppose this was truly my first experience as a NICU mom where the “roller coaster” feeling set in and completely slapped me in the face.

I’ve had friends who were NICU moms before.  I read their blogs. I hung on every word they wrote and spoke, even years ago before I ever could have imagined I’d have a preemie.  I knew what to expect going in to this based on what I remembered from their experiences. It is a roller coaster. You never know what the day will hold.  Setbacks are common.  You can’t really have any expectations.  You will put on a brave face for other people and make things sound better than they are.  I think it is just a rite of passage in the life of being a NICU parent to realize that while you are armed with all of this knowledge you’ve absorbed from others’ experiences, you fall victim to the same things that other NICU parents who’ve walked the path before you have experienced.

I’ve been trying to be so upbeat. To be grateful that he isn’t in critical condition. And that he isn’t intubated. Grateful that he is on “room air” and that we get to hold him and attempt bottle feeding him and nursing.  I do have so much to be grateful for. I have a live child.  What I don’t say is that I won’t wash his dirty outfit that I bring home until I can reconcile the fact that he is alive and I don’t need to keep it dirty with his smell just in case he dies. I can’t bring myself to wash his special blanket like Scarlet’s which lined his isolette his first week. It’s hitting me that while he is out of the woods on a lot of things and looks strong due to his size, I am so fucking scared for him.  He can’t eat on his own. He would be dehydrated and starve if not for the feeding tube. He’s so tired and weak as a preemie that even a few partial bottle feeds or attempts at breastfeeding leave him work out for the rest of the day.  He has little victories with feeding and had made improvements, but nothing to prove that he will be capable anytime in the near future of being able to eat without a feeding tube.

He forgets to breathe sometimes, and those “Brady” alarms were becoming farther and fewer in between.  He was maybe having one every other day the last several days.  After having 12 alarms in one night, that was huge.  He was making strides though. I was at the point where I hardly heard the alarms anymore because I trusted all was good.

Basically, at rounds, the doctors discuss his progress and while we never discuss potential discharge dates, I’m aware of what he has to do and timelines involved to be eligible for discharge.  I keep thinking- he could just take a few more feeds orally he would be ready. Many times he seems like a mostly normal but very sleepy baby and the NICU can feel like overkill though.

Today was the sort of day that reminded me that the road to growing and maturing for Preemies isn’t linear (something that a preemie mom friend of mine shared with me).  He had an awesome day yesterday and now he is acting more like a 34 weeker than the 36 weeker that he is now.  It’s so discouraging, but I knew to expect that.  He was meeting so many of the goals set for him, allowing me to picture him getting the feeding tube out and trying to prove himself as a successful feeder and grower alumni.  Today is the first day that I haven’t been fixated on what it will take for him to be discharged.  Today is the first day that I don’t care about oral feeding goals.  Or keeping him awake.

I don’t think I’ve been able to verbalize how terrified I am that we could still lose him.  There’s a piece of me that felt we were “out of the woods” when he delivered and got to the NICU because he’s in the best place he could possibly be.  He’s still having some huge challenges though, that make his journey a bit different than that of most 34 weekers.  I need to stop reading online about 34 weekers who only have 10 days in the NICU.  I need to stop wanting to try to “find answers” or wish for some formula that could predict when he will be strong and ready to live on the outside of the womb without intervention.

To be honest, I’m scared shitless.  I’m terrified of losing Gus. I’ve bonded with him in a way I never got to with Scarlet.  Every night I go home and watch pictures of him on our digital photo frame and hope so badly that he will grow big and strong and reach a point with his health where there are no concerns about his prematurity impacting him.  I know that the odds are in his favor. That he was a late preemie and much better off than an earlier preemie. That he SHOULD be fine and he likely will be fine.  But I’m allowed to worry. I’m allowed to not assume that everything will be fine, because my experience has led me down a different path and has made me a worrier. My journey has made it impossible for me to just have blind hope.  I can’t make assumptions. I don’t make assumptions. My journey has shown me thing everything is hard. Nothing comes easy. My journey has been worst-case scenario in many regards, which has made it difficult to believe that we will ever be able to just have “easy” and “normal.”  Most people don’t experience what we are experiencing, so it is hard to describe.

Basically a day like today sort of puts us back at square one, which is hard.  Really, really hard.  I can’t have blind hope, but I’m so hopeful for our sweet, brave as a bear Gus.  That he will turn a corner and be awake enough to eat. That his reflux won’t cause him to have Apnea. That he will start being able to take a full oral feed. That he will start “acting his age.”  I love him so much and it’s so difficult to see him this way.  Today has knocked me down to size.  Today has shown me that he doesn’t belong at home right now.  That trying to rush him to his milestones to get him closer to reaching his goals just won’t fly. That him showing his weaknesses is a good thing because only then will we truly know what he is (and isn’t) capable of.  That he may be in here another month, and if that’s ok if it’s what he needs.  That he isn’t like the 34 weekers who bust out of here after a few weeks. That he needs more time, and that time is the only thing we can give him.

A day like today has also shown me that I have every right to not just be grateful.  That I don’t have have to feel apologetic for my seven pound 34 weeker doing so much better than the micro-preemies down the hall.  His challenges are challenges. It’s ok for me to worry about him and show outward concern even though he isn’t in critical condition.  I have a live baby, but he is fragile.  I think I’ve been trying to build him up in my mind that he’s much stronger than he is, because to me he is.  He is brave as a bear, but he is my weak little boy.

This is me admitting that there was no way I could truly prepare for the NICU.  That even though I researched, and am realistic and in touch with what I have learned; I’m a scared Mama.  I’ve been trying to be just brave. I’ve been trying to be only positive.  I’ve been trying to only be upbeat and not let my concern and fear show.

I have always hated rollercoasters. This is me saying that I won’t be ready to get off until Gus is ready.  I have my proverbial barf bag ready and I don’t care how I get thrown around.  I’m traumatized as hell, but I can put that aside for him.  I just feel so helpless.

In the time I’ve been writing this, his oxygen levels have leveled out a bit ❤  Just another part of the rollercoaster ride. The truth is, things change so quickly around here that there’s sort of this constant state of discombobulation.

Thanks for keeping Gus in your thoughts.  Adventure is out there and this baby comes home, damnit. There’s just so much world to show him.

Birth Story of my Penumbra

Rainbow baby is a frequently used name of babies born to parents who’ve experienced a loss.  I don’t hate the term; but in our case it just doesn’t feel fitting. Scarlet wasn’t a storm.  The aftermath of losing her was incredibly bleak, but the fact that she existed was bright and shining for us.  I read about the term   and mentioned it in this post back when I found out I was expecting.

This article does an amazing job referring to subsequent babies following in a loss that really does the new baby justice.  Penumbra ❤  August Bernard is our Penumbra 🙂  I challenge you to read that article if/when you have time or if you are interested. Excerpt below:

The word penumbra means “partially shaded area” and while I like and use the term rainbow babies, I think this one might be a better description. These babies are born in the shadow of their older siblings who died. Because I’m fascinated by words and their meanings, I find it interesting that she used the term penumbra, meaning partially shaded, and not umbra, or fully shaded. With a penumbra, some light is still coming through, which I find rather beautiful. Children born in the shadow of loss are definitely not replacement children! Unlike a rainbow, a shadow is not fleeting or illusory, but always present and always changing. When the sun rises and sets, our shadows are long, casting a deeper, darker presence over our lives. When the sun is high overhead, our shadows are barely present. No matter where you go or what you do, your shadow is with you. It changes as you change. It is unique to your shape. A shadow cannot exist without some light, even if that light is small. 

When you are pregnant after a loss, the shadow of your past pregnancy will always be there. Some days you will feel its presence deeply, as if the light were dim and the shadow in front of you. Some days, you will hardly notice it. The sun will be bright overhead.

I wanted to take some time to gather my thoughts before writing this post.  I always knew deep down that Gus would come early, and I was so thrilled that he didn’t come as early as I worried he would. Making it 34 and a half weeks exceeded my expectations. There was that underlying hope though that we *might* make it to full-term.  With all of my interventions it was just starting to feel attainable.  My instincts though the entire pregnancy led me to believe that we would have NICU time, so I went in to this pregnancy 1) expecting a preemie 2) expecting NICU time and 3) expecting a traumatic birth because that’s all I know at this point.  From the moment I peed on a stick, my only wishes for a birth plan were 1) get him out alive 2) B stays with baby no matter what 3) If he is a preemie, give him the best of care and watch him like a hawk.  I have to say that all three aspects of my birth plan were looked after. I’ve been terrified that something terrible would happen during birth so close to the finish line. I just had a sinking feeling going in to the last few months of pregnancy that something bad would happen, so I’ve already been on edge lately.

I was majorly bit by the nesting bug the weekend before Gus arrived.  Buying some more baby stuff (as if we haven’t already done that enough), getting some of the finishing touches done on his room, getting the bed made that I would be sleeping in when coming home from the hospital with him (even putting a sheet down to sleep on the first few nights home).  I thought I was just struggling with nesting due to control issues, but it turns out it was real nesting. I’m so grateful for it, because there is so little I will have to do now when I get home.  Back to Gus’ birth story, though.

I just had a strange feeling on Monday night. In the days leading up to it I kept telling B that I just felt like this baby would be coming soon. On Tuesday morning, 3/21, I got up for my bathroom break in the middle of the night and when I got back in to bed, just a few minutes later, some fluid gushed at about 2:45 AM. It reminded me so much of what happened with Scarlet in my bed the night I was in labor with her.  I aid in bed for about 15 minutes hoping that I had just leaked some pee, trying to determine if urine or amniotic fluid. I didn’t hop up right away because I wanted my next time getting up to yield a more definitive answer. When I got up to go to the bathroom, there was significant fluid and decided a bit after 3 AM that it was amniotic fluid and called labor and delivery to let them know I’d be coming in.

I left home around 3:30 to go to the hospital and told B to just stay home and rest for a bit. I knew what was in store, and anticipated a long day so I just wanted him to fit some more sleep in before things went wild. Also, we needed to make arrangements for the puppy, and this would give us time to gather his things.  I figured if I was in labor, I had several hours before things would heat up, and if I wasn’t and they could do something to stop it, I would just end up laying there.

I experienced several  huge gushes of fluid on the way to the hospital.  Luckily I already had a waterproof seat cover for pets and had a towel down my pants. It was like in the movies unfortunately (also sort of like when Scarlet came), and the gushes got bigger as  I neared the hospital and I knew the big one was coming, so I just parked my car in front of the hospital, threw my hazards on, and reminded myself to have them give my keys to security to move my car. This was about the time I started wishing that I hadn’t played things down to B and that I had brought him with me.

I was settled in to triage by 4:30, and my big gush happened in their triage room. Before that I asked the nurse to watch me pee in the bathroom because I couldn’t handle my water breaking big gush happening while I was alone in the bathroom again. Things started feeling very triggering and it was getting harder to stay calm.  Within the span of a half hour, my cerclage was removed (without any pain management-ouch). The fluid tested positive as amniotic. And they diagnosed me with PPROM as the cause of my water breaking (pre-term premature rupture of membranes. It’s unclear whether that is what happened with Scarlet too or whether it was the infection let in by my incompetent cervix that had caused my water to break with her.  I asked to keep my cerclage stitch to give to Gus as joke when he is older. Better yet, it is blue, so I could give it to his future fiancee to use as their something blue someday : ) I’ve never been so grateful for thread in my life.  That stitch did it’s job as long as it could. They gave me the option to start Pitocin right away or to do the steroid shot for his lungs and try to give him another 24 hours. They would watch me closely for infection and induce at the slightest sign of infection. I opted to hold off on Pitocin for the time being.

Photo of trusty old cerclage 🙂

IMG_0872

I was moved in to room around 5:15 AM or so. I got the first steroid shot for his lungs (he was born almost 24 hours after getting that first shot!)  B arrived in mid-morning and my sister did too. I worked a half day until about 2 pm when contractions started and no longer needed the distraction of work. Also we experienced a medical event with Gus where his heart rate plummeted and our huge 8 person medical team rushed in to see if it was the cord being pushed by his head by the birth canal or something. No epidural yet- very scary and very painful. I thought we were losing him. I begged them to just put me under and do an emergency section to get him out, but they got him squared away.  I knocked out a few emails and decided it was time to stop working and take the Pitocin.

Contractions were pretty mild when they started around 3 or so.  I ate some dinner, spent time with family, and then they started picking up around 7 or 8 once the Pitocin kicked in, but still pretty mild and I wasn’t dilating very quickly. I opted for an epidural once contractions really started. I was also terrified that they would do another maneuver going elbow deep without pain management so I decided it was time.

After that, I listened to my Gus Delivery play list for a bit and had some fun enjoying family.  I laid down around 10:30 to get some sleep. Didn’t get much sleep. Gus’ heart kept decelerating.

Gus struggled with his heart rate dropping all night. They came in to place an inter-uterine device to see if it would help in tracking everything. They tried to do a transversion with me doing a sort of downward dog (with numb legs from a c section) on the edge of the bed and elbows and forehead on a chair to see if we could get Gus in a better position.

Lots of anxiety that night, very little sleep. It was comforting to know so many providers were watching him on their monitors too ❤  My sister would walk by and there was always one person completely focused on him, glued to the screen.  Finally a little after 3AM on Wednesday, 3/22, they decided to do a c-section ASAP since I wasn’t dilating past 4, even with Pitocin, and he wasn’t making any progress and his heart rate kept falling. Ironically enough, when you suffer from cervical insufficiency, it isn’t always just an issue of dilating too soon like I did with Scarlet. After the cerclage, some women’s cervixes fail in a different way and fail to dilate.

Things happened really fast from there. I felt a lot of pressure, but no pain. I had a wonderful duo of Anesthesiologists.  I seriously had the most amazing medical team ever. My wonderful Perinatologist led the surgery and actually lifted him out.  There was a strong team of female doctors assisting her.  I trust my Peri so much and I was so thrilled that she happened to be working that night and could be the one to get my baby here, after she worked with me so much to get this far. I listened to my Gus playlist and he entered this earth to Three Little Birds by Bob Marley <3, which had been my calming song throughout my pregnancy and was also one of the only songs I could listen to after Scarlet died.  I hoped so badly for a cry and I was so relieved when he cried. He weighed 7lb 2 oz, and was 19.5 inches long. Brian went over to watch them clean him up and he scored an amazing 8 on his APGAR test.  For a 34 weeker, he blew everyone away by how well he did breathing.

IMG_2376

We got to have some brief skin to skin before they took him back and whisked him off to the NICU. B stayed on Gus and my sister rotated in to the OR to be my support person.  I did surprisingly well when they took Gus away, but I’ve been preparing myself for the fact that he would go to NICU and be in good hands with his Dad, that it didn’t impact me. I was grateful for that.  They closed me up. I was later told by my Perinatologist that the extra lobe I had in my placenta would have required surgery anyway, so I was actually sort of relieved to have just had the c-section since the placenta wouldn’t have been able to be delivered vaginally. This extra lobe had caused me so much stress the entire pregnancy and I always had a feeling that something terrible would happen as a result. They only occur in something like 2% of pregnancies and in most occurrences, nothing bad happens. There is a chance of hemorrhaging if not delivered completely, so I was relieved to have had it removed completely and without hemorrhaging. I experienced more blood less than usual with births (similar to with Scarlet), but I didn’t require a blood transfusion.

I was just on cloud 9 about Gus.  I knew he was safe in the NICU and I just couldn’t wait to get to recovery.

IMG_0883

My recovery was difficult. I don’t remember much. I was ssoooooo out of it.  I had my sister go down to be with B and Gus for a little bit at some point and I told her to go ahead and hold him. He responded really well to her voice as we sound alike. I’m happy that we were able to hoodwink him in to thinking that it was me ; ) They took me down to see Gus a few hours after surgery wheeling me in the bed. It was a pitstop on the way to the recovery floor.  I remember being wheeled in near his incubator and I reached in through the holes to touch his belly and toes, but then I got nauseous and had to be wheeled out of the room after just a few minutes. I didn’t even get to hold him : (

The rest of the day was spent vomiting, being pumped full of anti-nausea and pain meds, and falling in and out of sleep. It is a complete blur and I have very little recollection of the day.  I remember needing help to pump. I could hardly keep water down.  My sister helped me puke several times and would take my used puke bag and hand me a new one.  It was so terrible.  I couldn’t stay awake even though I was desperate to see Gus.  I made an attempt to get out of bed around 10 pm, but almost fell and then puked again so I had to lay down and get more anti-nausea meds which made me tired.  Finally around 1:30 am (almost 24 hours after delivering Gus), I got up and walked, was able to drink some water and juice and eat some crackers.  They took me up and I finally held my Gus!  We did skin to skin and attempted to breastfeed, but he didn’t really do anything because he wasn’t quite there yet.  B did a wonderful job in the NICU with Gus while I was in recovery Thursday and Friday.

 

Thursday was spent pumping a ton, sleeping a lot, and not as much seeing Gus as I would have liked.  I would have people do “milk runs” to get my little syringes of milk to the NICU, or if no one was available, Brian would pop up to get my liquid gold.

They discharged me on Friday afternoon late in the day after I spent most of the day going between my room and the NICU.  B tapped me in to take his place in the NICU, and he packed up and went home to get the puppy from our friends house and then I was on duty. My c-section recovery probably went better here in the NICU than it would have at home, because I ordered all of my healthy meals from dining, so they came straight to me. The walk to the bathroom was a bit long, but the shower was a stall-style rather than a tub-shower, and had bars, so it was much better for me while healing than home would have been. And there were no stairs and the bed thing is lower. Overall, I’m happy with my decision to just hunker down and stay here. The staff has been pretty understanding, while I know a few probably felt like I overstayed my welcome or that my presence here wasn’t really needed since Gus isn’t in critical condition.

I do know that the act of leaving this hospital without Gus soon after delivery would have been incredibly difficult for me emotionally. I’ve left the hospital after delivering a baby with empty arms before and I couldn’t do it again. I couldn’t leave here until I felt confident that he would be ok.  Until I truly was ready. I didn’t leave his bedside for more than 15 minutes for over a week after settling in to the NICU after I was discharged.  Yesterday 9 days after his birth), I went outside for my first time with a cup of coffee on a patio and felt the sunshine on my face. It was really nice. After a week living behind a curtain in a partitioned off part of his NICU room, I realized that it was time for me to home (at least at night time).  I realized that I wasn’t taking care of myself. I was burning the candle at both ends. I was struggling to let nurses handle nighttime feeds and wanted to do everything myself.  I was running myself ragged and getting four hours of sleep total (broken in to chunks) was a huge victory when I finally let a nurse help with some night feeds. I started thinking about the oxygen mask on the airplane saying- that you can’t help someone else with their mask until you have yours on.  I just haven’t been living up to that.  So, I had B take me home with him last night after Gus’ 6 pm cares routine.  He has plenty of my milk to get him through when I’m not there.

And it went fine!  I shed a few tears, but I know that I need to get some rest and take care of myself better so that I can truly be ready for Gus to come home.  We hope that he will get to come home in another week or so. He’s really struggling with feeding but gets a little better every day. I was able to get more and better quality of sleep, feel a bit more normal in my own house, eat non-hospital food, and get even more excited about bringing Gus home. Oh, and I got to use my new Medela Sonata pump and that thing is amazing! Better output than the hospital grade Medela Symphony at the hospital. I don’t get to drive right now, so it was hard to wait until B was ready to drive me back once I felt “ready” to just be back with my boy.  It felt good to walk in to the hospital with a cooler full of pumped milk, better rested, and ready to do everything I can to resume some normalcy while handling having a child in the hospital

Adventure is out there! I’m really looking forward to having our son at home with us.

MMIIILLLKKKKK

Our day revolved around nourishment, feeding, and MILK!!! Gus has a tongue tie and will have it clipped tomorrow. It should make it easier for him to breastfeed.  It will be a bit painful since they don’t use pain meds, but from what I’ve read they just put baby on your breast and nursing helps it feel better.

I’m still getting lots of support from the feeding therapy side of lactation and the breastfeeding side of lactation. They give lots of conflicting information!  Basically- one side of the house is focused on getting baby to a weight goal and feeding normalization goal to get them out of here and home. Gus is just below his birthweight and we hope he gets there tomorrow, as long as his procedure doesn’t mess with his feeding. He is what they call a “feeder and grower,” in addition to needing to figure out his reflux and forgetting to breathe.  Once he gets feeding down, he is likely to have the NG tube removed and not require nourishment through the tube (breastmilk right now- no fortification). He is likely to be discharged once his feeding is consistent, productive, and leads to good transfer of calories from the bottle or breast.  Right now he falls asleep often while bottle feeding or can’t pace his sucking.  The tongue tie makes breast feeding a bonding experience mainly, but not a big transfer of calories to him.

The breastfeeding side of lactation doesn’t care how long he is here and the main goal is to breastfeed without the use of bottles, even if it means delayed discharge.  They of course operate in harmony with the doctors, but the goals are a bit different, leading to slightly different health outcomes and lengths of time spent in NICU.

Gus had a really bad night on Monday  night.  He had seven alarms in the night where it flashes red on the screen due to heart decels and flashes “extreme brady.” This is when he isn’t breathing. It usually corrects on its’ own without requiring intervention, but that night he needed fluid cleared from his mouth using suction and some strong pats on the back.  Last night was much better, with only two alarms and all of the alarms today weren’t technically recorded as events since they were slight and required no intervention.

He’s doing really well and he even lost his umbilical cord today!  All of the nurses say he is the cutest and tell their other nurse friends about his perfectly shapen head ❤ Thanks to the c-section.  The night nurse handled some feedings for me last night so I only had to pump and I got four hours of sleep total in the night, which was great! I have been getting 1.5-2 hours of sleep per night since Friday and I’m not usually a big napper. I’m done with my heavier pain meds, so I’m reaching a point in my surgery recovery where I’m feeling the pain a bit more. I still think I’ve recovered better being here than if I’d gone home.

I did venture out today to go down to my Perinatologist’s office to get my paperwork for my maternity leave disability and to grab us a coffee. It’s the first time I’ve left the floor since Friday and the first time I’ve been off of a floor associated with labor & delivery, recovery, and NICU.  I acknowledge that I’ve isolated myself quite a bit, but I enjoyed the 25 minutes or so that I spent walking around like a normal person. It felt strange to be on “the other side” as all of my time at this hospital has been spent as a high risk pregnancy patient. I’ve gotten many decaf lattes at that coffee shop. I’ve walked in to that hospital every week since October, with the end goal of walking out with a live baby and I was almost brought to tears walking by the main entrance. I still scan the transport waiting area every time I walk by for a lone bereaved Mama without her baby waiting on her ride.  I worry that one will be there sometime and I’ll no longer be here to go comfort her. It’s so stupid when I write it out, but I just have such a strong desire to reach out to people who go through what I’ve gone through and this is the place where high-risk women in our area go, so they unfortunately see a lot of Mamas leave here without babies.  It was strange to walk in to my Peri’s office not pregnant anymore- to tell the staff that I have the cutest baby boy upstairs in the NICU who is the biggest 34 weeker ever.  I was happy to get back to my sweet boy though.

Pumping is going beautifully! He has only had to have about 50ml of formula total since birth as I’ve had a supply to primarily feed him (even in his NG tube!).  He’s at 61 ML per feeding with eight feedings per day now and I officially have enough surplus right now for five feedings! 24 hours ago, I was pumping the milk that he would be given for his next meal. Talk about pressure!  My last pump was exactly 122 ML which is enough for two feedings at his current rate of consumption! I even graduated to the huge bottles for my pumps as I was overflowing the ones that they gave me.

I’m obsessed with milk. The nurses are obsessed with milk. The Pediatricians are obsessed with milk.  Someone’s even helping themselves to my gallon of milk in the family food fridge that I use for cereal. At least they aren’t taking my Gus’ milk. Then I’d have to throw down : )

B is still working so that he can save his time off for when Gus is at home. He joins us for about four hours in the afternoon to give me time to nap, be “off duty” to relax a bit, or to go shower or whatever I need to do for personal care. He also brings me some clean clothes and anything else I’ve asked for. I send dirty laundry home with him and other things as I no longer need things.

Having sleep last night really helped and I think I’ll ask our night nurse to help me with some feedings again. Mommy guilt begins right from the beginning. I just feel bad not handling every feed. Even when he is being fed through his tube, I like to hold the syringe or have it hooked behind me. I’ll even pump while he tube feeds!

(ALARM interruption- is pulse disappeared and I had to reattach the monitor on his foot). It’s much less scary than it was several days ago.

I need to set some “happiness goals” for me. Being here 24/7 is my decision and the right thing for me right now, but I acknowledge that I need to go home for a visit at some point as I haven’t left the hospital since early Tuesday morning on 3/21.  Tomorrow I want Brian and I to spend 45 minutes or so to walk over to the university campus to see the cherry blossoms for Scarlet. Friday late afternoon, I’d like to take an Uber home and order pizza with B, hang out with puppy Louie, and either spend the night in my own bed or come back here around 10 or 11 if I start freaking out.

We have a carseat installation workshop on Saturday AM and I keep joking that he will probably be unexpectedly discharged on Friday or something, leaving our carseat install plan to go haywire 🙂  I don’t think we will be discharged for another week or so.

Here are some fun pictures!

 

IMG_1319IMG_1288IMG_1350IMG_1348IMG_1353IMG_1342

Adventure is out there! AND Gus is a smile laugher/sleeper. It was amazing to see it a few times this afternoon.

NICU Life

I’m so lucky to be in a position to hide out in Gus’ room nonstop.  Our plan this week is for B to delay beginning parental leave until Gus gets to come home (or if his condition takes a negative turn). He will just log vacation for last week.  We want as much time together at home with Gus as we can get.

Gus is 35 weeks + 1 day gestation today!  He is doing really well and all of the doctors and nurses are impressed with him.  He did a session with PT today and they thought he did great.  It’s crazy to think that a week ago, we had no way of knowing that he would be within our arms within less than 72 hours.  He is right around 6 lbs 14 ozs right now, down just a few ozs from his birthweight. I wish I could hold him more often, but most of the nurses prefer that we only hold him during feeds.  they want him to be mellow in the time leading up to cares, so that the results will be accurate when they take vitals. I basically sit in the same room as him for 23 and a half hours a day, three feet away, either staring in from the outside of his isolette, or looking at pictures of him. I get to hold him probably six hours a day and those are wonderful hours.

IMG_1083

IMG_1106IMG_1105IMG_1104IMG_1103

 

 

I mostly think I’m doing pretty well, but today was really hard.  We are out of the woods (fingers crossed) on so many of the biggest scary things.  His challenges right now are jaundice (and they are trying to avoid the lights so it is frustrating to see him struggle), feeding issues (he has an NG tube which he ends up needing for about half of his feeds), and some apnea problems where he forgets to breathe for a minute.  We are playing with his temperature regulation and trying to get to a place where we can take the lid off his isolette and give him an opportunity to just be a normal dude out in the open air.  We will see if we can accomplish that tonight.

My milk is coming in beautifully and I’m pumping almost exactly what he needs at each feed, which is about 57 MLs at the moment. Sometimes I am about 3-10 MLs off, at which time they supplement with some formula. For the most part, I am a pumping fool and am keeping up with feeds. I don’t want to get out of my NICU routine and stray from the hospital grade pump when I’m doing so well. I love the Symphony by Medela! I don’t have any surplus milk and I’m not really running behind, but each pump session’s liquid gold is spoken for in the next feed.

Our current schedule is every three hours (8,11,2,5,8,11,2,5- then repeat. He starts on the breast (which he gets maybe 2-5 ML out of since he is still such a little due) and spends 15 minutes latched on; sometimes eating and sometimes not.  He then is supposed to eat a bottle in the span of 15-20 minutes (57 ML per feed right now), then I move to pumping.  His feeds are supposed to take about 45 minutes, but are taking at least an hour and 15 minutes right now. Basically, by the time we are finished and I get the bottle and pump parts washed, go to the bathroom, maybe eat a snack or a meal, and either take a 30 minute nap, call my mom, or surf the web, it’s time to begin it all again.

His cares usually begin about 15 minutes before we start feeding and they check all of his vitals, change his diaper and weigh it, do a weigh prior to nursing and after (of course the after comes after the nursing is complete), and I pump for letdown while they change his diaper so I’m ready for him.  They are so supportive of breastfeeding here and have an amazing feeding and lactation staff.  Part of the team is focused on baby eating and part of the team is focused on helping mom to pump and bf.  It is pretty amazing though, how one on one it is and that I get such good access to the support and resources to get a good start.

He still has his NG feeding tube and the wires to track respiratory function, heart rate, etc.  He no longer has his IV, which is great and I feel much more comfortable holding him without all of the connections hanging around.  He is on room air within the isolette.

IMG_1093IMG_1040IMG_1188IMG_1187IMG_0987

He’s starting to wear real clothes and it is so cute to see him in more than just a diaper. His wires poke out, but it is a lot less intimidating than when he is just in a diaper.  B is awesome about bringing me what I need, doing laundry, keeping things going at home with the puppy.  Puppy will be going away for a few weeks for an intensive training/socialization regimen at our boarding place where we boarded Max and where puppy currently does socialization classes. We are trying to hold off on sending him until we come home with Gus, so B is going to work from home this week to be able to look after puppy in the meantime since I’m not there to handle lunch time, after work, and early evening potty breaks.

IMG_1094IMG_1071IMG_1066

The hospital has really great and relatively affordable food. It’s just nice to get a hot and healthy meal without having to leave and without having to sacrifice getting the nutrients I need right now for nursing. I try to spend enough time out of the room that they don’t realize I’m living here full time (even though they said it’s ok), but I do realize that it’s a bit awkward that when I go get my visitors sticker for the day, I’m coming out from the actual unit and not actually coming in from the outside.  Someone brought a sick kid in yesterday and I was ready to go apeshit.  I just have no patience for idiots who put all of the other babies at risk.  So far it looks like I’m the only parent on the floor who is here fulltime, but it sounds like there are lots of “long-timers” whose babies have been here for months, and I know it’s not sustainable to be here for months on end.  I keep hoping to make a friend or two in the family lounge, but I’m usually one of the only ones here in the middle of the night when I tend to go wandering. They have a parent to parent support group on Saturdays, but I was the only one who showed today : (

What I’m Excited About Today (aka how I’m keeping my mind busy and distracting myself from worrying):

  • I found the pacifiers online that they have here that Gus appears to love.  JollyPops seem really awesome and I went nuts today on their website buying multiples in different sizes, some teething products, and some little lovies that attach to both.
  • I’m so happy that I prepared so much for him early, so there’s nothing that “has to be done” before he gets home.  I still have another carseat, a small stroller, and a few things to buy him that won’t be used until he is a few months old, so there’s no rush on that. It just feels good to not be sitting here feeling ill-prepared or experiencing the nesting desire here.  That nesting binge I went on last weekend was evidently the real thing.
  • I’ve been making these makeshift pumping bras out of these medical woven belly fabric things used in L&D for holding the contraction and heart rate monitors, where I just cut slits for the phalanges.  I treated myself to some really nice pumping bras, and I can’t wait to start using them when they get here.
  • He’s so big that he has completely surpassed preemie clothes and is filling out newborn clothes well.  I did buy quite a few newborn clothes which the tags have already been removed from (no biggie- I’ll hang on to them for if we have another child), but with him hopefully getting the feeding thing figured out soon (grow Gus, grow!), he may even outgrow newborn size before we get home. I’m so happy that I didn’t go too wild on newborn clothes and that we asked the Grandmas to avoid buying newborn size.  He has such a cute collection of 3 mo sizes and there are so many cute things he can wear right away!
  • I started crocheting a new blanket.

 

I’ve had moments where I wonder if I’m doing the right thing by staying here and I really think I am.  I sometimes worry that I’m overdoing it physically after my c-section, but I think I’d be overdoing it more at home, especially with puppy around.  I’m up and down a lot here, but except for the long walk to the bathroom/shower/kitchen, I mostly only have about a four foot radius I’m walking around in within Gus’ room- either from bed to his isolette, to the chair, or to the sink to wash pump parts.  I think my world needs to be pretty small right now and at home, there would likely be more temptation to throw in a load of laundry, to do stuff in Scarlet’s room, take the dog out, etc.  Also, I think the walk to the car, ride in the car, walk from the car to Gus’ room and back would be so painful, so I like it that I’m keeping it simple up in here.  My goals for the day are basically to pump and nurse as much as I can, stay on top of taking my pain meds, eat enough to be able to take meds and pump, and to be in the moment, documenting this journey and being present even though it is a difficult place to be.

I’m so incredibly grateful to be looking at my son right now.  I am pretty emotional at the moment, thinking a lot about my dear Scarlet, especially about missing out on the early days with a baby and that I didn’t experience the “firsts” with her.  I’m still in disbelief about what happened and am struggling with the fact that my body failed me again and we could have lost another baby.  I wish I didn’t have to have two traumatic births. Being here brings up a lot of things about Scarlet- mainly that if she had been only five or so days farther along in gestation, there would have been a NICU team present at her birth, and she very well could have thrived and survived on a NICU floor just like this.  I wish that I could have made it to full-term with Gus and that he didn’t go in to distress during labor.  I am feeling incredibly drained by the fact that I had two incredibly difficult labor (and different) experiences within the span of only a year and three weeks.  To me pregnancy is truly a means to an end, and I’m so happy to have my sweet little boy four feet from me. I know that things could have gone very differently.  I was already a Mama, but it feels good to have a child on this earth to parent.  We are building this amazing bond and it blows my mind every time I get to hold him.

IMG_1111IMG_1103IMG_1084IMG_1095IMG_1088fullsizeoutput_18d0IMG_1155IMG_1170