Homeward Bound

There’s no place like home.

Dorothy Gale- The Wizard of Oz

Hello there everyone! Long time no see… er.. read I guess. Quick update, and a readers digest version of our discharge story! Per my last blog post I went home to FL for a few days to get my head together. Of course on my way TO Tampa, my husband was informed by the NICU team that we were being discharged in two days. This was amazing news, but now I was in Florida. GREAT. So I had a SUPER quick trip home, and then booked it back to Philly, left the airport bright and early on that Wednesday morning, went STRAIGHT to CHOP, and met my husband. We signed a lot of paperwork, did some aftercare discussions with the nurses and nurse practioners and then we GOT TO LEAVE. It was SO SURREAL. We were taking OUR baby home! I didn’t quite believe it. I was sure that even as we were standing on the train platform readying ourselves to board the long Amtrak back to Florida, I was sure that someone in scrubs was going to pop out from behind the train car and say, “JUST KIDDING, Takes backsies!”

There were no take backsies, but that did not mean that our initial journey home was any easier. The baby had been sent home with an apnea monitor, he was still suffering from occasional apnea due to his prematurity, and while they had all been pretty mild events, the NICU team sent us home with a monitor, until further notice, we are still currently being monitored and working with the apnea team closely to this day. (Over a month later! Hello as this is an update from the future!) We are still in serial casting for Corbin’s clubbed feet, but overall his treatment is going well.

The transition home was happy but difficult. Lack of sleep, lots of bills, and the reality of coming home was both very welcome but also somewhat foreign. My parents and both of my sisters picked us up at the train station in Tampa after a 5 hour delay in the Carolinas. At this point we were dirty, hadn’t gotten any sleep, barely anything to eat, and I was out of both breast milk and formula for the baby, so was scrambling to get home. My sister Katie was bawling as we got off the platform and loaded the car, everyone was very emotional after the last six months finally seemed to be coming to an end. Or at the very least a beginning of the NEXT chapter of our lives.

The train was exhausting. It was loud, and there was no way effective way for us to set up the apnea monitor, so we took turns napping at night, while the other parent stayed awake to watch the baby breathe. It was not very fun, as my anxiety taking the baby home was already sky high. 0/5 stars, I do not recommend. It was rough, I cannot express how terrible I looked at the end of this journey. In days (at that point) old clothes, dirty hair, smeared makeup. My parents drove us back to our house. MY HOUSE, I GOT TO BE IN AND SEE MY HOUSE. It was so magical. Grandparents and siblings watched the kiddo while we were able to take very well deserved showers.

Since then we have spent the last month at many many doctor appointments. We have had a transitionary visit at our new Spina Bifida Clinic’s neurosurgeon, who I REALLY like. He said Corbin’s scans looks amazing, and we are doing a follow up in December just to make sure nothing major has changed. He is eating like a champ, (and pooping too!) Out next big hurdle will be getting his urodynamics done at a local urologist to make sure things are ship shape. His pediatrician has been very kind, we are getting our shots, and doing normal baby things. So far he is reaching milestones. He is head lifting, and tracking, and cooing. We still need to work on sleeping through the night but we are getting there!

Mommy is happy to be home. Its hard, but its… ours ❤

Its hard to be the “hard” friend

Embrace the glorious mess that you are

Elizabeth gilbert

Right now in my life, I am the hard friend.

We all have one of those, it usually cycles around between people in any particular circle. Lately, due to just the nature of my life and what has been going on, I am the hard friend. I have been the hard friend for months.

It is hard being the hard friend. For many reasons. First of being, that in order to be the hard friend, you have to be going through something difficult, and second being, people usually don’t know how to handle you. If someone in your life is in the hospital for a few days, its easier. Send them flowers, or a card, call them to check in, usually home within a few days etc. If a friend has a breakup, they usually occupy the hard friend spot for around a month or two, etc. When its months and months, or years and years is when it gets sticky.

People don’t know how to talk to me anymore. Between the baby, and the distance, and the medical and money turmoil. Even just having a baby can be isolating for many people, as their childless friends have different schedules and priorities. Younger friends still prioritize partying, drinking and dating. People tend to drift apart even in the most standard of parenting scenarios. This year has been insane for me, and people don’t know how to react. I get it. I have been on the other side of this coin. I have friends who have gone through problems and scenarios that I do not relate to. I am familiar with the anxiety of asking myself… “What do I say?”..”What can I do?” …. “What if I make it worse?” Unfortunately this anxiety usually lead to silence. People don’t know what to say and so… they just… don’t say anything. There is a certain fatigue in dealing with someone’s ongoing problems, especially when you cannot relate. It sparks an uncertainty in people that usually results in separation.

I am not writing this from an accusatory standpoint, or a high horse. Just expressing myself. I am not bitter, or angry. Just sad, and very tired. One usually has a circle who you think will be there for you no matter what, and then as you get older, or hit the REALLY big road bumps that circle seems to get smaller and smaller. This usually means that you embrace quality over quantity, however it doesn’t mean that it stings any less. It hurts. The messages spread out, until eventually they mostly disappear, the phone calls lessen.

That being said, Do I blame anyone? Its not like I am the best person to converse with right now. I’m going through a lot. I have mood swings. I have days when I feel really angry. I have days where I feel really depressed. I am not easy to be around right now. I am not the easy friend right now.

Right now I am not a quick beer after work.

I am not a movie date

I am not a jovial phone call

I am not the shoulder to lean on, most of my people have become accustomed to

I am not a lender of money

I am not a mirror selfie or a glam Instagram post from a girls brunch

I am a mess. I am tears at 3am. I am hospital coffee. I am living in the same four outfits. I am dirty hair and no makeup. I am under eye circles. I am gut wrenching sobs in the shower when I hope nobody else is awake.

Unfortunately messes need people the most. They require the most clean up.

I am working on becoming my own mop. ❤

The Never-ending Story

Time flies over us, but leaves its shadow behind

nathaniel Hawthorne

Yesterday marked four weeks since Corbin was born. We are now on week five of NICU. It feels never ending. Some days are very good, and some days are very NOT good. When the baby has a good day, I have a good day. I feel like that is a specific aspect of parenting that will never go away. All of the baby’s current issues, the ones keeping us from going home (That we know of) are due to his pre-maturity, and not his Spina Bifida. Everything related to his Spina Bifida currently is going as well as they could for the most part. We had a recent brain and spine MRI, that looked awesome. His Neuro surgeon was very happy with his brain scan, and his healing. He related that he wants to see us in six months, and then again at a year, to make sure kiddo is doing well.

He is getting the hang of oral feedings, but gets tired easily and so the amount isn’t consistent, which is a big thing the Neo-natologist will look for before we can go home. He was taken off all breathing assistance today, but we have made that step before to then be put back on 12 hours later. We had a really low saturation dip earlier this afternoon, and I am anxious about the same. They were unsure if it warranted putting him back on support or not. Tomorrow we are taking a class on how to replace and feed through NG tube, as we may be discharged with him still partly tube feeding, they also are up in the air about an apnea monitor. He is currently being casted for his club feet, and his feet were SO swollen and bruised this morning when they checked on him that they decided to give his little lets and feet a few days off to try and heal. They looked so painful, and while they didn’t look like they were bothering him, it broke this mom’s heart, and I am worried about it leading to skin breakage and or infection. That will push everything back even farther, and I dont want to push any orthopedic timeline back even further for the little guy. Overall today was wrought with a lot of steps both forwards and backwards, and I am feeling extremely frustrated.

Some positives today, the baby is now wearing adorable little outfits. He is allowed to have crib toys like soothers, and mobiles, which he loves! His favorite is a little Baby Einstein Aquarium that lights up, makes water movements, and plays classical music. He is awake more often now, which means we get a lot more eye open time, and can see his little smiling face and touch his chubby little cheeks. We are allowed to do more of his care now that he is hooked up to less equipment. I’ve never been so happy to change poopy diapers! We found a collection of baby books and have been able to read to him while he is awake, I especially love when my husband Jesse reads to him and does all the voices. It makes my heart explode to see them bonding, and the baby smile at the sound of his voice.

So there have been some positives this week! Lots of ups and lots of downs. I feel like a metronome with everything giving me whiplash. Emotional backs and forths, monitors constantly beeping, loud noises, no sleep. Lather, rinse, repeat. I am lucky he is in good hands, I am lucky he is safe, I just so badly want to be done with this chapter of our family experience. I want to flash forward to family dinners, and bedtime stories, and picnics, and swimming lessons, and be away from the constant hum of hospital monitors, and the lingering smell of hand sanitizer.

We have been in discussion with the Nurse practitioners about discharge timeline. We are going to get lessons on the monitors and NG tubes in case we have to go home with them. I would really prefer not to, which could also mean more time in NICU, so its all very overwhelming. Do we go home with monitors, so that we get to go home. Do we stay longer. What do we do.

I feel like I live in limbo. I so badly want to take the next step.

Please be strong baby, I love you! You are doing amazing, mommy just wants to go home and start our life together. You are incredible. ❤