The Good, the Bad, and the Land of Acceptance

There isn’t much time. There never is. So, I’ll just break this down:

The Bad–My husband has been full-on working (not just admin stuff) for 2 weeks straight (including weekends) and that leaves me 90% on my own with the new little bundle. I managed just fine for the first week, but we changed meds for her reflux and something went wrong. She was off–clingy, yelling, crying, and all around unhappy. So we changed back. Now the poor thing is pretty constipated, but she is at least acting like herself.

We continue to struggle with the apnea and the reflux. I have started to try to put her down for naps or at night, but she wakes up a lot with the reflux. I get frustrated when it comes to putting her down. I want it to all go right and perfect immediately. Logically, I know this is unreasonable. But I’m tired and I just want something to be easy, but no luck.

Sidenote: What I really want is Mrs. Doubtfire to come live with us and take care of everything. Sure, she was fictional even in the movie. (And actually it makes me a little sad since I miss Robin Williams) but it would be great to have someone to take care of us (my husband and I) while we’re trying to take care of this little one. One can dream…

Anyway…

The Good–She is three and a half months and charms with ridiculously cute expressions (and now she giggles!). We spend countless hours divulging important secrets over diaper changes, or hanging out in the Boppy.

The reflux itself is the same. Maybe, just maybe slightly better (sign of the cross, knock on wood, throw salt over my shoulder, fingers crossed)…very slight.

Our visit to the pulmonologist was reassuring. He said the same thing our pediatrician has been saying: “She’ll grow out of it.” But….When????? We might possibly do a sleep study to evaluate the apnea, but I am not sure we are ready for that. We are visiting a speech therapist to make sure we can continue to feed her well. She is doing alright, some choking while feeding though. And eventually, I would like to transition to bottles so I can leave the house for longer than an hour and a half.

But I am not sure anything will change.

I have this feeling like we are just supposed to hold steady and plug away. Just hold the course and our breaths and wait for the winds to change. We’ll see…

In the meantime, at least I am not fighting the diagnosis so much. I am frustrated that we are still on (what feels like) a hamster wheel, but we are managing and I am trying to be grateful for that. Overall, I am trying to be more grateful but some days I fail miserably. I don’t think the holidays will help. In my mind I see people shopping and meeting up and wearing red plaid jackets and matching hats as they take in the holiday season.  And here we are watching out the window as they whistle Christmas tunes and laugh at lunch outings. Oh, is that not happening? Well, it’s fun to romanticize it all.

I did, miraculously, get my tree up and decorated. So.–on that positive note I shall leave you with a photo of my tree. IMG_5517

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Jordan’s 5th Birthday

Today Jordan would have been, well…might have been five. The likelihood of him making it to five was slim, but we fought HARD anyway. Instead, we got 16 months. Longer than the doctors expected and much less than we wanted. Some people may think us morbid or stuck or…who the hell knows… but the bottom line is losing your child is a lonely island. People forget. And although there are support groups, we never found one that fit with our situation. So, we live with it alone. The birthdays come and go and few call or remember. And I understand. I really do. I do not place myself as someone better at remember others’ sorrows. But my son is scrawled across my chest and no matter how many years pass, or even now, with a new little one to occupy 99% of my brain, Jordan is there–part of me. The world keeps turning, but for us, a piece of our souls are and will be stuck in time.

I miss him.

Hitting the Release Valve

It’s funny how writing down and sharing your struggles can make them seem lighter. I wrote the last entry with such fervor and frustration. I really felt like we were up against something substantial and implacable. Despite many friends and family telling us that things were going to be alright, we just haven’t been able to hear them, at least not for long. We have needed constant reassurance. I don’t know what about the past made me feel so insecure. Maybe it is just the uncertainty of a new little being that you are responsible for. No. It is because we lost a child. Simply put, I was fearful to lose another.

But with the help of a couple of friends who reached out, I was able to make a mental shift. And for the first time, I feel like I’ve landed on a little piece of equilibrium. Thank God. One friend reached out to commiserate, to understand how life can not work the way you’d hoped it would. Another friend was and is my cheerleader. And her words somehow reached me: lean into the fear and trust your instincts. For some reason, I could hear now. And I accepted two things: 1) We are doing the very best we can. We truly have made the best decisions we could with the information we have. I do believe that. And 2) Not every moment is so dire. We are okay–right now. And we will be okay in the future.

I have struggled so much against what I thought was a cruel twist of fate, but when I stopped tugging against the ropes, they fell away. Lean into the fear and do what is scary. That is the lesson. Because, for the most part, the “what if’s” are scarier than the reality.

For example, we made the call. We called for an appointment with a GI doctor. We thought this call would start a cascade of unfortunate events. But in reality they can’t even get us in until December the 7th, so we wait…like we have been. Ha!

In the meantime, Mariana has improved. And although we haven’t yet figured out what caused her stomach issues, I am not claiming a ticket on the “meltdown train”.  We’ll figure it out.

The little chick is almost three months old and we are having more moments to enjoy her smiles, her new sounds, and her fascination with new things.  In general, we are more grateful. So if you prayed for us, I think it worked. 😉

The Struggle

Whatever Zen I thought I’d acquired a month ago, vanished quickly. There were several days when I wept on and off and thought I couldn’t manage all this. But…routine set in and Mariana seem to be getting, if not better, more regulated. She continued to eat and grow and we thought as long as that was good, we would wait. In the last week, things have gotten worse. She has been more fussy and irritable after feeds, actually spending less time at the breast. Then there is the constant gas, burps, and hiccups. Add to that an increase in the apnea, particularly while sleeping, and the stress has been mounting again. We contacted our pediatrician and he has suggested going to a GI specialist since it is the reflux that is causing the most issues. We told ourselves repeatedly that we would wait, that we would avoid going down the medical path. The weigh of our experience with Jordan is heavy and dragging us down. In fact, so much of this journey with Mariana has echoed our experience with Jordan. It is so frustrating. Wasn’t this supposed to be different? Wasn’t this supposed to be a new experience? Instead it feels like we are being forced to face the past over and over again.

I feel like I am holding my breath, waiting for the discomfort to pass. I thought that is what we were suppose to do. Have faith that “this too shall pass” and just wait. But today, I am not so sure. In fact, that is the struggle I have been having for the past…well, who knows how long, but the struggle is: Do we count our blessings and wait patiently for all this to resolve itself, not being sure if it will resolve itself? Or do we confront our fears and go to the doctors, ENT and GI? My natural tendency is to go to the doctor, figure things out, lay out a plan, and keep moving forward. But with the heaviness of loss weighing me down, I am reluctant to step into that world again. It was bad enough when we were in the hospital overnight when Mariana was 5 days old. Can I really face more tests?

If we do make the appointments, I am telling myself that any specialist visit is a fact-finding mission only. We are not obligated to do a bunch of procedures. In general, Mariana is doing alright. She is eating and gaining weigh, although both have been a little less the last week, which is why I am starting to worry. She is more uncomfortable and somehow is having more reflux and apnea. She was having plenty before. She might be constipated, but can not pooping for a few days cause such a shift? We need her to be more resilient and that just doesn’t seem to be the case. We’d like to think so, but just a little constipation and I am performing acrobatics to find a position for her to be comfortably sleeping. All my old injuries have flared up. My thoracic spine injury from volleyball when I was 24 is kindling in the middle of my back and the herniated disc from Jordan is popping out causing flares of pain here and there. It is both hilarious and battering. I just don’t know what we are supposed to be learning here. I want to forget the past and move forward, not relive it day after day. It is a bit of mental torture.

So today, I am thinking we need to approach this differently. I just don’t think I can sit back and be passively waiting for the passage of time. It makes me feel out of control and impotent. Is that how I am supposed to feel? Is this some form of humbling that I am to embrace? Maybe. Maybe I am suppose to quell this angst for good and docilely accept that my life is contracted for some duration of time. I thought I had but…maybe it is just ego rearing up, the thought that I think I have a clue. I don’t know. I just have this inkling that we are missing something. Perhaps it is the idealist in me that thinks there is something we can find that is going to make all of this suddenly better. But I lived a very different story with Jordan. It was one issue after another until we had to let him go. Fear. That’s in my belly.  What will we find if we take steps down the medical path? Healing? Or greater pain for all of us?

Wow…this is a little dark. Reassured we are doing alright, but this is what we are facing and we need some prayers to help us face both the physical and mental struggle we are tangled in. I think from the outside people can see and feel that things are going to be okay. And that is great for them, but for my husband and I, we are deep in the gunk and trying to shift our way through holding heavy emotional baggage…and it feels daunting.

Life Reinvented

Someone at some point said “The only constant in life is change.” I know this to be true all too well. I think most people would agree that to fight change is to create unhappiness in your life, yet we dig in our heels and shake our heads from side to side hoping that the next big change doesn’t come. But God ignores us, the world spins and life happens.

When I took the Meyers-Briggs personality test 20 years ago, the one personality description that seemed to waver was whether I was an extrovert or an introvert. And the truth is that I am both. I am perfectly happy to putter around the house, in the garden, and on my keyboard. But there is the other half of me that really wants to get out into the world, travel, talk to people, experience new things, dance, ride a roller coaster, and more.

With pregnancy and now a little baby with laryngomalacia, my world has closed in. I can’t go to the gym 4 times a week, run errands, meet friends out willy nilly, or do anything without calculated if it is worth greater exposure to my little girl. As I write that, I feel like my chest just squeezed tight a bit. That is the extrovert chafing at this situation. On the other hand, the introvert is kind of excited to have an excuse to stay home, dive into the smiles and coos and keep the little darling all to myself. Not to mention, here I am writing another post in less than a week.

My point is there are benefits to isolation– it could be looked at as a retreat. And to survive these next few months, I will have to do just that. God has placed this cross as a blessing and I plan to try to find the smooth edges, the comfort, and the grace from it. There is something here, something valuable. Life has changed and every time life has changed for me, it has been for the better. And every time life has changed, I have fought against it only to find joy and blessing once I submit to God’s will. Each evolution is a huge pain in the ass and I resent each one. But on the other hand, I am so thankful.

I write this as a promise to get my act together and feel some sort of grounding in this world turned upside down. I’ve started writing lists and trying to wrap my head around life with a new baby.  I don’t have the same magic mommy mojo I had with Jordan. I think I lost it when I lost him. But some of it is coming back, slowly. As I learn how best to take care of this beautiful little girl. I’ll keep figuring things out. I’ll have to.

 

Oh Baby!

Let me first say: this is so much harder than I thought it would be. Jordan was a difficult child, and so I had (naively) thought having another would be, if not a piece of cake, at least significantly easier. That is not the case. And with my husband’s and my collective baggage, the stridor and reflux, and the fact that we are five, almost six years older–things are straight-up hard.

I can, with almost certainty, say that it is due to our PTSD that makes all of this a greater stress. Add the fact that my husband has a medical background and also tends toward the fatalistic perspective, and you can imagine the daily struggle we face. We are a prime couple for anxiety. And we are diving right in.

Yes, you can tell me that overall the issues that our new baby girl is dealing with are things that she is supposed to outgrow, but the stridor and reflux manifest themselves as obstructive apnea which happens both when she is awake and more when asleep. So we watch like hawks, reluctant to put her down yet resentful that we can’t seem to do just that.  Except to medicate the kid with anti-acid meds, there is little to do but pray and wait. Let me just say that waiting and the patience it takes for waiting are not easily come by for me. Oh, but that is one more lesson God is teaching you, you say. And you would be right.  But heavenly crackers, I am ready to be a dud on the cosmic level of spiritual lessons. Yes, I am grateful that God has taken such an avid interest in our family, but I could really use a miraculous break. Instead of things getting worse, it would be super-duper great if things got better…soon.

We survived her baptism and for that I am grateful. It was as I expected, extremely stressful to both us as parents and more so for Mariana. By the end of the Orthodox service, which entails the dunking of a child three times in a vat of water after she’s been smothered in oil, she was having major apnea/stridor, basically gasping for breath. As we quickly sped away from church we were contemplating whether we should take a side trip to the ER, but she fell asleep and in sleep her body can reset. Her recovery took a few days. In fact, the next day, she was still so stressed out she couldn’t sleep for almost 8 hours, which for a 9 week old is terrible, just awful. I made it my mission to make sure she was calmed and her life safe and structured for the next few days. Now, I am feeling depleted and a little lost.

This depletion is due also to family leaving after the baptism. My husband’s sister and sister-in-law came to visit for 10 days so they could be with us for the big event. And although guests coming added to my stress level, in the end it was comforting to have them with us. And when they left yesterday, my husband and I felt very sad and a little bereft, actually. They will travel back to Lebanon and it is so far away, it’s depressing. God willing and I truly pray this, we will be able to visit next year.

Anyway, this is an entry of complaint and I hate being ungrateful. The little nugget is super sweet and has this amazing smile that she loves to show (as long as she is not hungry, or gassy, or sleepy). And the truth is, she is stronger than my husband or I right now, poor kid. So pray for us. Pray for us to have the strength and wisdom to care for this remarkable little girl. And pray that we find a little more happiness and gratefulness in this struggle.

A Little Girl Cometh

I finally put her down to sleep. But there’s a problem. If I’m not holding her, I don’t think I can sleep. When she is on my chest, I can feel and hear her breath. Now, I keep checking to see the rise and fall of inhale and exhale. I continue to monitor her shifts and twitches. She is almost three weeks old and I can count on my hands the number of times I have put her down to sleep. Mostly, she lays on my lap or chest. Or I am carrying her around. There is a thing called “baby wearing” now. I have all these contraptions from our time with Jordan. He hated them all, so I didn’t really get to use the Moby, or the Baby Bjorn, or the Ring Sling. I carried Mariana in the ring sling tonight. It calmed her fussiness for awhile. Plus, I got to put some laundry away while still holding her. Seems like progress…

Mariana was born August 19th. She came slightly over a week early. And for the most part, she is doing great. She is eating well and should be back to her birth weight now. But she has laryngomalacia, a condition where the larynx is underdeveloped, a little floppy, and so it can partially flap over the throat causing airway constriction and wheezing, called stridor. For the most part, she seems unaffected. But when her reflux gets bad, we are dealing with obstructive apnea which is scary. We actually went into the ER the first week she was born. They put her on a monitor overnight to watch her oxygenation. And she did fine. So now we are just supposed to monitor at home and wait for her to grow out of it. Easier said than done some days. She is just so small.

Jordan was smaller, he came out 2 lbs 2 oz and then fought to get to 5 lbs before we finally got home from the NICU. He gained more weight once he was home. But still, this girl seems so little, even though she is almost 7 lbs. I know we are not even 3 weeks in, but I am wishing for time to fly so she is bigger and stronger and I don’t worry so damn much. But I suppose that is a foolish notion. I forgot how much worry there is when you have a child. I hope we get better at dealing with the anxiety. Right now, most days I have to make myself pray just so I don’t choke on the worry. I just give it over to the Saints she’s named after, St. Mary (Theotokos) and St. Anna, and hope they take over. They usually do.

I’ve bounced around with the baby blues. But I am feeling the better these last few days. Less hormonal, more rational, typical me. Which is good because I was questioning my mommy skills for awhile there and that doesn’t help with the anxiety when you don’t feel like you have a clue what you’re doing. (sigh)

These are the ramblings of a new mom. Well new to being a mom again.

I thought it would be so much easier than Jordan and I suppose in some ways it is, but the mental struggle has been harder. Perhaps because we lost Jordan and we have this persistent PTSD that we carry around, it has been more difficult to feel capable. Anyway, like I said, the last few days have been better and I am grateful.

I wish I’d written something sooner. It would have been a more celebratory writing. Because we were and are thrilled she arrived safely. But the sleep deprivation and the worry has etched some lines in our exuberance.

I read about the concept of the 4th trimester. The first 3 months of a baby’s life are still this huge adjustment. They are still developing, still getting used to the world. I think we are still incubating as parents as well.

Anyway, I will end this bit of chaotic writing with a a picture of the princess. She is lovely and sweet and 3 weeks tomorrow. Whew!

thof-2