Dughri-Straight Ahead

I know. Where have I been? It isn’t like I haven’t had lots and lots of thoughts–I’ve had thousands, maybe hundreds of thousands even.  But by the time I get a chance to write these fantastic, amazing, introspective reflections down, my brain is fried and all I want to do is shove a cookie in my face and watch Veronica Mars. So has the last couple of months gone…

I was overjoyed that January ended. The month was brutal, more so than usual. Be gone you dreaded days of frigid temperatures and darkness! February and now March have flown by and Mariana is 7 months old. Overall, the stress of her condition and the fear that have accompanied it, have eased. But there are moments. As the weather improves I am thinking about taking her out to parks and maybe for some visits, maybe more…But the worry of her catching something still permeates everything corner of our lives. Which, to be honest, really sucks. I want to push passed the anxiety but she is still having noising breathing and pretty bad GERD and reflux. The doctor says to expect an improvement around 9 months, but there is no way I can continue in the bubble as it has been. I’m just praying for guidance and faith.

I didn’t make any New Years resolutions in January. As mentioned before, January stinks. But I am ready to make some now. As inspiration I draw on the Lebanese word: Dughri. It sounds more delightful than it looks in print. It sounds more like Dig-ga-ry. Say it fast, while jutting your hand forward. Congratulations, you just told someone to keep straight. I chose that word because it is about forward motion. No more languishing in the past, worrying, worrying, worrying. Instead, here are my ambitions for the near future:

1) I want to be courageous. Not fearful that something bad will happen. 2) I want to be happy. Not sad, missing Jordan. 3) I want to be grateful. This little baby dynamo we received is so full of joy and glee. 4) I want to sleep. This one might be tougher as she is still struggling with some issues, but I want to put it out in the universe and hope God says, “Absolutely, you should sleep!”

I worked hard to create a life after Jordan passed away, and it was difficult to let the comfort of that life dissipate amid the drama of a newborn.  It has taken almost 7 months to realize that that life is dead, and still longer to be excited about the blossoming of the new. I hope by putting these goals out there into the ether positive energy will swarm and wrap around our lives. I am trying to be open and receiving for a different life. The ideas stirs a little panic in my chest but I pray that God will fortify me for all the new, wonderful happenings that may arise.

 

Advertisements

A New Year and old problems

IMG_5735Mariana has evolved into a super cute little cherub who can babble, grab, swat, and pull a fist full of hair–hard. But although she has matured by leaps and bounds, she is still contending with serious GERD and reflux. When will it be over? I scream skyward. She was almost completely free of apneas until this last week when her GERD worsened. (sigh) Oh well, we will just keep doing what we are doing.

But it’s a bit depressing. For a moment, we felt a sense of things lightening, some of the weight lifted off our shoulders. We could worry a little less, get out a little more. But with the return of apneic episodes, everything feels as it was for the most part.

We did hire a nanny. And slowly (very slowly) I have been able to clean and organize the house, which helps my mental distress. This is only the nanny’s second week, so God willing things will feel better in a month or so. I am still sticking very close by. Mariana seems alright with the nanny but it will take time to build real trust.

I had a list of things I wanted to get done this month. But I guess I will be okay one more month without a haircut or exercise. What’s the point anyway? It’s January. Cold and snowy with nothing to do. I think I just need a sunny day…and a pedicure.

The Good Stuff

I have bombarded the internet with my parental insecurities, so I thought it was time to put out some of the good stuff. Mariana is 4 months and although this period is a little sticky, there are moments of amazing growth, cuteness, and love. I figured the best way to enjoy them was through photos. Some of you may have seen a few of these, but they are my favorite photos this week. Enjoy!

When does it get easier?

We are stuck in the 4 month regression. At least,  I hope that is what is going on right now. She is more irritable, more tired, yet more prone to not sleeping. Somethings are better. There are fewer apneas…well, I guess that is it. She still has plenty of GERD and now she is spitting up and officially has reflux. I am cleaning all my nursing shirts twice as much. So that’s fun. (Deep breath in and out)

I have been trying to find the ease in all of this, but it is difficult when the little one is struggling with the basics, like sleep. I know we haven’t helped by rocking and nursing her to sleep, then going on to hold her in our arms all night helping the sleep along. But it seemed like the right thing to do when she was so small and fragile. Then we were too exhausted to change the habit and now we are just trying to make it through this fussy period and hope it all miraculously figures itself out. (Deep breath in and out)

I wish I knew what the heck I was doing. I really feel like such an amateur, just kind of looking at this baby and hoping she tells me what is going on. I was watching a friend’s baby last year, she was 6 months and it was easy. I didn’t think about it. I just played with her until she was tired and then walked with her in my arms and she fell asleep. Now I am all concerned about schedules and routines. And Mariana is all tightly wound and gets overstimulated easily. She just tries to take in every little detail. She’s intense but maybe I’m over thinking it. In fact, I am sure I’m over thinking it all. (Deep breath in and out)

I just keep feeling like there is something blocking my access to ease and gratefulness.  It feels like a huge column in the middle of the room that you just can’t see around and you keep skirting around its perimeter trying to get a good view, but you can’t. Is it the sleep deprivation? Possibly. I have always needed more sleep, not less, so months of 5 hour nights certainly erodes the brain and thus the confidence. (Deep breath in and out)

So yeah, I just need to breathe and sleep. Sounds easy doesn’t it?  I don’t know how it will happen, but I am praying God has the answers because I sure don’t.

 

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

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. 😉