Posture

My neck, my back (lick it)

KHIA

Obviously the quote above is meant to be a joke, and warning in advance today’s blog is going to be a bit of a vent session. So if you aren’t interested in me being a whiny baby, I apologize.

Lets talk about boobs. We all have them (Well… about half of the population anyway) Breast pumping post pregnancy has been very difficult. I was attempting to pump within one hour of Corbin being born, per the recommendation of our lactation specialist. The first two to three days I was pumping every two hours, even through the night in order to try and stimulate milk supply, because not only was my baby in the NICU and not physically with me, but also my body was supposed to be pregnant for seven more weeks, and wasn’t quite ready to start that process so soon. My body was very confused. Luckily by mid week I was producing droplets, and then colostrum, and then milk for the baby! Which was great. I am still pumping every three hours or so, and Ill take a slightly longer break overnight for about 4.5 hours so I can attempt to get some REM sleep, but overall I am very tired, literally… all the time. The first few days between the lack of sleep and the post C-Section drugs I felt like I was having hallucinations. Those day are literally a blur, and I have pockets of lost time that I do not remember at ALL.

As any of my fellow moms can attest, when your milk finally comes in, it is… a little overwhelming. I have always been a chesty person, so to go up at least one cup size overnight was really shocking. I kept looking in the mirror, bewildered and having a mini episode of body dis-morphia. I remember showing my husband and his exact words were “Oh good lord, what are those, and what happened to you?!” As of now, luckily I have been able to supply enough milk to the NICU to feed the baby. Which is awesome and I am very proud of, but its hard to keep the supply up without being with your baby all the time. As that is what normally gives your body its cues, and as of today I have been unable to try to nurse nipple to mouth. The baby is still getting a small amount of breathing support and until his tube is out we cannot work on latching. So I pump, all the time, constantly to try and combat that.

My posture has been… TERRIBLE. Posture is something I already actively work on in my normal non displaced pregnancy life every day. My mother has told me to put my shoulders back everyday since childhood, my dance teachers would always yell at me, etc. In my 20s I started doing yoga fairly regularly, which helped a LOT, but I have been unable to work out since fetal surgery. I also work an office job, so back in FL, I would try and stretch consistently to avoid lower back pain or hunching related to working in front of a screen everyday. Since beginning to pump… my posture has been… completely awful. Between the heaviness of my breasts, fatigue, and just the placement of the suction cups I look like a hunched over witch, or a hag. I look like the old woman who tried to convince Snow White to eat the poison apple.

Last night my back hurt so terribly that it was hard to sleep. I cried out of exhaustion and frustration because I couldn’t sleep due to the pain, and then by the time I maybe would nod off my alarm would go off to pump again, and of course, pumping really hurt, and then my back would hurt again. Lather, rinse, repeat. After about round three of this, I shuffled over and fought through the fog of exhaustion to take some Ibuprofen. and got down on the floor to try and do some yoga stretching hoping that would help. My husband eventually woke up to my tears, and like the rock star he is, he tried to give me a back rub and massage out some tension around 4:30 am. Eventually I fell asleep again, and awoke around five hours later, which then caused another hormonal breakdown and panic because I was sure that taking TWO 4+ hour breaks between pumping would dry up my supply (Something that had seemed to dip over the last week anyway) and I would be ruining my chances of breast feeding long term due to this back pain issue, and me not waking up in time to pump again. I felt like I was sabotaging all my weeks of hard work, because said hard work was making me tired and grumpy and physically spent.

So what is the point of this blog? Nothing other than an outlet for today’s post.

I am tired. My entire body hurts. After this I am going to go back to my cycle of child’s pose, cat and cow position. Trying to stretch everything out. I took one of my remaining “good pills” given to me after C-Section, which I was trying to save in case of an emergency or a really bad day. I guess last night and today was said day. I will also attempt not to cry again until at least tomorrow (no promises!) Later on I will go see my baby and none of this will seem as important, because he lights up my heart and my mood every time I see his little face. He is worth all the hard work, and the late nights. but.. MAN. Being a mom is no joke. For all my exclusively pumping or breast feeding moms… kudos to you. This is some HARD WORK.

If anyone has any good stretches or advice, the comment section is open.

NICU

Sometimes it’s okay if all you did today was breath.

Anonymous

Tomorrow baby Corbin will be 3 weeks old. Three entire weeks! I cant believe it! Time is basically meaningless to me as I have been in a perpetual cycle of pump/nap/pump/visit baby/pump-repeat over the past twenty days. The longest stretch of sleep I get is between three to four hours, as I am trying to keep my milk supply up so that the nurses constantly have enough for him to feed on, since I cant nurse at this time until he is off of breathing support. This little guy is a fighter, we are still working on breathing consistently on our own, as well as gaining some weight, and feeding by mouth. The last few days he has made TREMENDOUS progress, but last week was ROUGH.

When the baby has a bad day…. MOMMY has a bad day. I spent most of last week sobbing, especially at night. It is so hard to not have my baby with me at night. I know he is in the best care possible, and even though we are only a mile away at the Ronald Mcdonald house, it feels like a continent away to this new mom. I cannot wait until I can bring him home to his little room, and to his house, and introduce him to his loving family and pets. The days when he struggles to breathe and I watch his monitors fluctuate, cause me a lot of anxiety, and I have spent many a day crying in the lobby of the CHOP NICU. Luckily our care team is completely amazing and I am constantly checked on by our social workers, nurses and coordinators. These feelings are valid, these feelings are normal, what I am feeling is alright, and taking care of myself is okay. As much as I want to constantly be by the baby, many people have encouraged me to rest while I can. These are the BEST babysitters in the world, right? But my pumping schedule keeps me from resting TOO much, although I try. The time has made it possible for Jesse and I to make lots of phone calls, and work on transition of care when we go home to FL, and try and get our many ducks in a row while the baby is still in the hospital. Lots and lots of appointments in our future!

A lot of people have asked me how I feel, and I don’t know how to answer them. My primary feeling right now is … exhaustion. I am tired. I am weary, and am running out of steam. I feel as though I have been strong, and holding everything together for months now, and without my baby able to be with me I feel like I am getting closer and closer to falling apart. Its like I had a stored amount of energy and strength and its slowly dwindling. I feel like a daisy at the end of a long summer, as it succumbs to the heat and moisture and begins to wilt and rot. I am consistently reminded that I am SO CLOSE to the finish line. I am a super mom. I can do this.

I can do this.

I can do this

I can do this.

Right??

Independence Day

Well Everyone…What a crazy few weeks we have had! The baby came! Surprise! Our C section was scheduled for the 30th, but our little guy came early, on his own schedule on July 4th, 2019. The picture featured above is the first one taken by my husband after his grand debut! My water broke unexpectedly in the very early morning of the 4th, and by 11am EST we had decided to go ahead and get him out! Little Corbin Angel was born midday around 1:47 pm EST, and we instantly fell in love.

Mommy spent three days inpatient in that SDU and then was released back to the Ronald Mcdonald House. I am feeling pretty good all things considered. Between pumping milk every two hours, and shuttling back and forth to the NICU, I am remiss that it has taken this long to give you all an update! But despite his early arrival, baby is doing very well. He was born at a good weight, Five Pounds and six ounces, his heart and brain are looking great, and we are working on breathing and eating on our own, which is common with premature babies of this gestational age. So far we are emptying both bowels and bladder very well, and our labs have all looked really good! He came out crying, and moving BOTH LEGS! This is especially amazing, as pre birth we were really not sure what his functional mobility would be at in one of his legs. Little one is already crushing expectations and making his parents very proud. We are waiting to be released from the NICU pending certain milestones, and working on transferring his care and making phone calls down in Florida to make sure everything is ready Doctor wise for when we get to go home.

HOME… H-O-M-E… I am SO EXCITED. I cannot WAIT TO GO HOME. I want more than anything to be home with my baby, it makes my heart ache. Our NICU stay, while mild in comparison to many other families, has been so hard on me emotionally. Probably a mix between situational stress, postpartum hormones, and general feelings of displacement and home sickness, I have been quite a mess. I was so used to having my little one… literally inside me and with me at all times, that the transition to having him sleep not only away from me, but in the hospital and hooked up with tubes and monitors was very jarring. Some days are better than others. Some days I am fine, and continue to keep it all together and be a strong mama. Other days I am embarrassed to say that I cry for hours, and get emotional over the distance between me and my baby, and my home. I want so much to be able to nurse him, and take him back to see his family, and puppy brothers and to be back in our family home and town. We are probably in for several more weeks of waiting and NICU time before that is possible, and I am hanging on by a thread. I know I need to suck it up and remember that in the grand scheme of things a few weeks is the blink of an eye, but I just so badly want this chapter to be over. I feel like my entire pregnancy has led to this moment, and I want to be able to move on with our lives (Well at least until we come back for his yearly check up) Everything feels so.. clinical currently, and I am so emotional and in mommy mode and the two just are not meshing.

This kiddo is… CUTE. I know I am biased, but I am TELLING YOU he is the cutest little thing. (Pic below) I never knew I could instantly love another person as much as I love this little guy. I hope he always knows how much I love and would do anything for him. I would go to the ends of the earth for this tiny and perfect human. His smile melts my heart, and sometimes when I look at him I burst into tears. Not out of sadness but out of pure aw and appreciation. I just cant believe he is real, and here, and in my life. Welcome to the world my little Corbin! You are in for a wild ride my love!

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Holland?

Today was our last day of the Mama Care pre-natal class at CHOP, and it was a surprisingly emotional afternoon. I didn’t expect to be so sad it was ending, and I didn’t expect the subject matter to hit me so much today. I think I cried a total of three times, even though it was a relatively GOOD day. The following bit of writing was not written by myself, but was shared by one of our Midwives, and it was all the words I wanted to express but didn’t know how to. I’m glad someone DID though, because now I can direct them to the same.

So if you were ever one of those people who wanted to ask, “Laura, how are you feeling?” “What is going through your head?” “This seems SO hard, what are you going through emotionally?” See below…

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Maternity Shoot

You don’t take a photograph. You make it.

Ansel Adams

We were able to do a mini maternity shoot last week, shot by the lovely BGB Creative (https://www.facebook.com/BeeGoesBuzz/) who was in Philly to visit! We found a little hipster spot to take some shots, and then got brunch. I was overjoyed as it was something I was 100 % positive we weren’t going to be able to do while being displaced from home! So happy it fell together.

Some of our favorite shots below! Happy we will have these to frame and show the baby when he gets a little older.

Image may contain: 2 people, people sitting and indoor
Image may contain: 2 people, including Laura Gonzalez Hutson, people sitting and indoor
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Image may contain: 2 people, including Laura Gonzalez Hutson, people standing, tree and outdoor

Mason’s Voice

So this entry is to thank and spread awareness for the amazing Mason’s Voice foundation run by Baylee and Louis Joseph. Baylee received fetal surgery at CHOP just like me! She is a fellow Florida mom, and reached out to me when I got my diagnosis and was in the process of setting up things with CHOP. We spent weeks communicating and texting and she was an incredible blessing, as I was feeling so lost and caught up in a whirlwind. She explained to me about her inspiring story, and her incredible daughter Mason. Mason is not only completely beautiful, but as also so far exceeded all of her doctor’s expectations! She is doing amazing! She leads a happy and fulfilled life, full of love from her amazing brother, parents and support system.

After speaking to Baylee and Louis for a few months, we were the very first recipient of the Mason’s Voice donation for fetal surgery families. I cannot express how completely grateful and happy we were for this truly amazing gift. I was overwhelmed with emotion.

Please check out the video of the same below, when I learned the news! I have also linked the foundations Facebook page. Please donate if you can, they do such amazing things for Spina Bifida babies and families and are a true blessing of a family. I am eternally grateful to them, as is my son.

https://www.facebook.com/MasonsVoiceforSB

Temporary Living

Temporary setbacks are overpowered by persistence

Quentin L. Cook

After condo hopping for a little over a week we were able to move into our new “home,” at the Ronald McDonald House of Philadelphia. I was thrilled. Not only was the constant moving really hard on me physically, but I was ready to just feel secure and know that we had a long term place to stay that was close to the hospital. I had all of those worst case scenario situations about early labor running through my mind and my anxiety was through the roof constantly. We arrived and I instantly felt better.

For anyone who isn’t familiar with this charity let me share a little background. The string of Ronald Mcdonald House charities act as homes away from home, for families dealing with pediatric illnesses and treatments at hospitals in the host city. It is a place for the parents and siblings of sick children, and or the children receiving treatment to stay at little to know cost to themselves. You get a room for your family, a ton of therapy and group resources, access to social workers, as well as free meals while you stay there. They have big play areas for the kids, and constantly try and keep it positive for the children, which I think is amazing. They have enough to deal with. It is a truly incredible charity, and once we are back in the black financially I plan on donating to them yearly, as they have done SO much for my family. The PRMH was the first of its kind in the entire country, and was founded in 1974. At that time they could support 7 families at a time, and now with various moves and expansions that number has increased to over 100. They just expanded and built a brand new building, which is where we are currently staying. We are the first people to ever stay in our room, and I am completely comfortable and taken care of. Every week on the day of my appointment there is a shuttle service to take us to and from the hospital, so we dont have to worry about driving. Its not home but like.. truly is amazing, and I am completely grateful we get to stay here.

We have been at PRMH over a month now, and its been ten weeks since I have seen my home. Its difficult. Some days are really hard. I am about five weeks from my scheduled C section, and am holding out that he makes it to 37 weeks, which would be the absolutely best case scenario for his development. My goal over the past month or so has just been…. STAY PREGNANT. Take your meds, keep calm, rest, dont over exert yourself. Stay pregnant. Strict bedrest was really rough because its hard to convince yourself to take care of yourself when you arent going anywhere. Luckily that only lasted three weeks, but I had to bargain with myself and convince myself to do basic things like brush my teeth, and shower, change shirts etc. There didnt seem to be a point if I wasnt allowed out of my bedroom anyway, plus for the first week or so I was still dealing with a fair amount of pain. I dipped into a little bit of a depression but luckily once I was cleared to modified bed rest and was at least able to take walks and have short excursions in the real world, it has made a HUGE difference. Now we can at least go to the store, or the movies, lunch etc, my husband and I can have SHORT dates together, although inevitably I come back to the room and fall asleep. The tiniest things make me exhausted and I am … really hoping my normal energy level returns after the baby is here… because its non existent currently. All my nurses have assured me it will! Fingers crossed! I feel like a bit of a hot mess, although every week its a little easier to walk, bend, and do basic tasks. So far I have not had any contractions, bleeding or signs of early labor but I am still being very cautious. Probably a little over cautious but, better safe than sorry.

Thursdays are my favorite days of the week because its appointment day. That may seem strange that my favorite day of the week is going to the hospital, but it is! It means I get to see my baby! Every week we have a short ultrasound to check his progress, and its nice to see his tiny face, and hands, and know that he is doing well. I like the reassurance of seeing him, and getting to see my reason for going through all of this really hard stuff. My baby <3. The love of my life. So while the rest of the weeks may be really hard and repetitive, Thursdays are ALWAYS a good day ❤ So far the little guy is doing well. His brain and heart are looking great. His Chiari II brain malformation has virtually reversed and his ventricles in his brain are currently well within the normal range. He does not currently suffer from Hydrocephalus, this may change but I am holding out hope. This was my main goal for getting this treatment done. Any mobility/orthopedic/other issues we must face moving forward, at least I was able to do what I could to make sure that some of his neurological issues and surgeries could be avoided. if I could improve ONE thing it would be worth it, and mean less invasive intervention later in his life. I am so pleased with his progress and healing so far, and he is already stronger than almost anyone I know. Mommy’s little warrior for sure.

Thursdays also mean prenatal class aka “Mama Care,” at CHOP. I … LOVE Mama Care. Its a voluntary group weekly meeting with a small group of parents also getting treatment from the Special Delivery Unit. Varying diagnoses, varying backgrounds etc. I had felt so alone until our first group meeting. Its definitely a form of therapy for me, to hear that I am not alone. There are other families, and other mothers who have the exact same fears as me. Fears about this really scary and hard situation, fears for their beautiful and innocent children, and the future. These women are so beautiful and strong, and I am so grateful that I get to see them once a week. This coming week is the last one for the session and I am somewhat devastated its ending. Some of the women in our class have already given birth or are set to in the next few weeks, so the sessions have been getting smaller, but I really have gotten SO much out of it. Several of the mothers and support family members are also staying at PRMH and its nice to see familiar faces in the hallways and the cafeteria.

We will be here until delivery at the end of July. Send good vibes that the little man behaves that long! I need to have this bun in the oven for as long as possible!


Ciao for now.