What If's

What If's

Written 16 hours ago by Amber Gannon Medina

What a strange day at the hospital. I got there in the early afternoon and John put Mira to sleep right before he left for work. I don't know what he did to put her in a major trance, but she slept all afternoon, into the evening. I spent the day reading and writing, making lists and trying to find time to add more exercise into my week. I finally went downstairs and got a salad for dinner at Cafe West......Mira finally woke up with a huge diaper, and timed it just right so that when I changed her she pooped and peed all over the bed. Sneaky little lady! 

I also talked to one of Mira's doctors. I feel like most of the doctors at the hospital give me little snapshots of her health. She looks good today. Her lungs are a little wet. She is running a fever. We needed to give her Tylenol. Most of the time, living moment to moment is a good way to go about things, but sometimes I feel lied to. I know that is not the doctors intention and I know that is not what they are doing, but I also know that they omit a lot from their conversations with me. 

I know there is a lot of hesitation around weaning Mira off the Milrinone. From what I gather, it is because every time they have tried to do it, MIra reacts pretty badly. I've been really nervous about them trying it (at one point this week, they mentioned they might try this weekend), but it seemed like all the tidbits of information surrounding this one act were jumbled. I knew we would have to watch her renals, I knew her oxygen sats might go down, that she might collect extra fluid in her lungs.

Somewhere deep down, I also knew that Mira couldn't go home on Milrinone, and one thing I didn't want to think about was what her doctor told me today-if Mira can't get off the drug, one of the only things left to do for her is put her on the heart transplant list. Of course, if she simply tolerate the weaning of it, they would most likely check and see if there was an anatomical something or other to fix, but Mira can't go home on Milrinone. 

I know there are a lot of what if's here. There are a lot of what ifs surrounding Mira's entire life, her circumstances....And of course, during this conversation I asked the questions I've been wanting to ask, the questions whose answers I am never sure I want to hear. But that I need to hear. I am tired of people thinking that Mira is going to do anything the normal route. She just isn't! So I want to be prepared for the different ways this can turn out....I want people to be honest, and yet when I hear the truth sometimes I just feel beaten down.

How many times have I felt this, have I said it-this is just no life. It seems that Mira knows it, although I am sure she doesn't. She hasn't been able to enjoy any of the nice weather-we can't go outside. She hasn't experienced so many things we all take for granted with our kids-eating, car rides, stroller walks, being tossed in the air, interactions with her parents in a place they are comfortable in, the zoo, the pool, grass and flowers and butterflies, smells, fresh air, sunlight....Her life, for 7 months now, has been this sterile place, with people poking and prodding her. A place with beeping and needles and overhead lights....Sometimes the idea that this is her whole life makes me feel so deeply sad, I just don't know how I can hold such a powerful feeling inside of me....and so I bury it down deep, so that Mira doesn't know how horrible, in fact, so deep that even I don't know how sad I feel.

I am relieved to hear it all. Relieved that someone brought up the opportunity for me to voice what I was so worried about, but couldn't bring myself to ask. 

I selfishly feel like I just want our life back. I am tired of this one we presently have. I imagine I will feel better tomorrow, and maybe Mira will wow us all and move forward towards getting better and better. But right now, I just want to remember what it feels like to not always feel like the other shoe is going to drop, to feel lighthearted if just for a day or a few hours.....To hear what other people are talking about instead of listening with half an ear and worrying about Mira with my whole being. I want to remember what it feels like to not have stress always inhabiting my body, to feel my age again.....And I want to feel like a mom....To have people ask me how old my baby is or what her name is, or to mistakenly call her a "him". 

I know better not to pray for Mira to not need a heart transplant or for her to get better fast. God knows what she needs better than I do. However, I do know that once again, I feel the need for reprieve, and that I will find it in there somewhere-that is at least one thing I can pray for. 

Thank you all for sticking by us throughout such a long process. I feel so tired and worn out, but Mira is my daughter-all of you who have read our entries, or left encouraging messages or visited or donated things.....Thank you so much! You have stood by us for the long haul and we appreciate it, and need it more than we can express. We love you!

Homestretch?

Homestretch?

Written 19 hours ago by Amber Gannon Medina

Yesterday was Mira's 7 month birthday and we had a nice day together! 

Mira has been doing fairly well, heck compared to a few weeks ago she is doing amazingly well! She is starting to try to roll over (not exactly easy when you have to bring a pounds worth of cords, oxygen tubing and IV lines with you!) and seems very determined to succeed. She is also doing a bit of sucking and swallowing which is another big accomplishment given that she suffers from oral aversion. She loves to watch Baby Einstein videos and play with her crazy hot mess of a mobile we hooked up over her bed.

The one big hurdle of eating is going very well, which has been surprising for all of us. We were forewarned from the very beginning that feeding issues were the big hurdles that kept a lot of families from going home. After quite a lot of trial and error, Mira seems to have found her groove. She is on continuous NG feeds and has finally reached what the doctors consider FULL feeds-a very important accomplishment! 

The next meanders (and most likely weeks) mean a lot of weaning. Valium, milrinone, oxygen, IV diuretics.... To name just a fee! Mira has just started getting weaned off her IV diuretics, and after a bit of extra fluid, they upped her enteral dosage. She seems to be doing well and has so far not had to be put back on the IV dose. However, we are all used to Mira-out of nowhere-having difficulties breathing due to excess fluid on the lungs, so I am hoping that doesn't happen!

The next big step will be taking Mira off her Milrinone and I am nervous about it. I think the doctors are too, because they keep putting off trying to wean her. I will definitely be on pins and needles when we attempt it!

Mira is currently on the schedule to have a G tube placed on June 6th. Sigh...I know, and appreciate that a few moms have told me not to worry! And that reassurance has made me feel a tiny bit sad instead of outright terrified of the prospect. I remember when Mira was a few days old-before she had her 1st surgery-and I marveled at how perfect her little body was. No imperfections, just sweet and soft and pink. I knew in a few days she would have a gnarly scar down her entire chest and it made me so so sad. Not because of the vanity or look, but because of what it represented-pain, loss of innocence for a tiny baby who shouldn't have to go through this.

Of course, after 3 open heart surgeries, Mira has just a few scars and imperfections now, but I have that same feeling. Having a G tube placed will feel like a constant reminder to me that Mira will struggle and experience a lot more pain than most ever will. Also, despite it being fairly safe it still has some nasty possible side effects. I am also very nervous about putting Mira through another surgery-she likes to make simple things turn dicey, and complicated things turn dangerous-simply put, she likes to ratchet everything up a few notches. Even though a G Tube is a "minor" surgery, it still means putting her under, intubating her and a good amount of sedation...all of which she reacts to in unpredictable ways.

Even with all the negative feelings I have associated with the G tube surgery, I am also excited because it means we will be close to being home bound! Apparently, the doctors want to get Mira close to being ready to go home before they do the surgery. So at least when I tend to feel like pushing away the thought of a G tube, I remind myself that it means our one big goal is in reach. HOME. 

Other than all this slow plodding with Mira's progress, there isn't much else to report. The big news lately is how extraordinarily busy the hospital has been! Not only is our ICU unit full to capacity, many of the other units are as well. Our nurses have been putting in tons of work and so many hours and they haven't complained once-we want to thank them a million times for their hard work! 

We are also grateful we haven gotten moved to another unit-we can't imagine how lost and unsure we would feel if we had to work with a bunch of strangers. The doctors have had to make tough decisions about who gets to stay in the unit and who is moved to other ICU units. Mira keeps the people who KNOW her on their toes, I'm not sure how I would feel about people who aren't familiar with her taking over her care. So far, so good-we've managed to try and ingratiate ourselves by bringing candy and cookies! Please oh please let us stay-twix bar?

Uneventful

Written May 16, 2012 4:00pm by Amber Gannon Medina

It has been a pretty uneventful few weeks with Mira. Thank God! 

She has been working on her feeds, and as far as I am concerned she is doing amazingly well! Its pretty difficult to impress doctors, but even they are happy with where she is in her recovery and progress. After a few weeks of her having some difficulties with throwing up her feeds, they switched them to continuous NG feeds, and she is doing much much better. In fact, where she was throwing up a few times every few hours (and feeling fairly miserable as a result) before, she is now "urping" a few times a day-at the most.

She is also doing really well with what we refer to as her "reserves". Before her Glenn Surgery, when Mira would get upset her renal numbers (Renals are a number that shows how "happy" her organs are. The thought is, if your body is going into fight or flight response, your least important organs will shut down first-like the kidneys!) her numbers would plummet into the 30's, and would take a long time to trend back upward. Now when Mira gets upset, her numbers drop into the 60's! And sometimes they don't even change at all.....Its a big improvement, and really one that shows that that her heart is doing much better.

Her pleural effusions are also getting much better...Each day's X-ray looks a little better than the previous day's image. These have been helped along by a new diuretic that Mira was prescribed, and I am really happy that she doesn't seem to be in imminent danger of having a chest tube again. Those things look awfully painful and it was no secret Mira was not a happy camper with them in!

It seems that once you get too comfortable, some shoe drops or falls, or whatever that saying is. This week, it was an unexplained fever that came on very unexpectantly. Unfortunately, Mira still has a Central PICC line and because of the fear of a blood infection (associated with an IV), they had to put her back on antibiotics. It seems that her fever broke the night before last and we are just hoping all her cultures for bacteria and infection come back negative. Mira has a history of getting fevers that are never explained (sometimes she gets them just from being upset) and that mysteriously go away on their own....

With all this awesome progress, I can't explain why I feel so depleted this week....I am happy that Mira seems really content, and we have had some wonderful days together! I think that sometimes when life settles down, two things happen in our new world.

First, I think hospital life hits you over the head. I am like a broken record, but "living" in a hospital just takes something out of you. The food is lousy, the air is canned, and the lights are unnatural-everything feels artificial and not of this world. There are days when I leave the hospital, and I feel like I've spent the day on another planet-entire weather systems have come through or something newsworthy may have been talked about all day, and I have been shut off from it all. It can make life feel topsy and turvy and I have trouble grounding myself in the here and now.

The second part of it has to do with being saturated with this whole experience. I've come to understand that once you reach a certain level of stress and trauma, it takes you a very long time to drop down to your pre-trauma point. John and I have both noticed that because of this, we've had very little patience for normal, every day things. If someone in a car cuts us off, we get very very angry. If something small produces anxiety for me, it can balloon into something that I obsess (just a little bit) over...and if something like Mira's fever crops up like it did this week, some of the old waves of feeling like our world is toppling over, come back to haunt us. Its like our minds know it isn't that bad, but our bodies and emotions don't listen. 

Its hard living like this.... and its this new found relationship with stress that catches up to me. Especially when there are quiet weeks...This little nerdy, nervous part of me says (while wringing her hands!)-Amber, don't get too comfortable-remember the last time you felt fancy foot and free? It lasted a day, and before you knew it you were walking into Mira's room and feeling a face slap from a new unpleasant surprise! 

I wonder when I will feel more myself? I think the old "myself" is probably dead and gone, but I wonder if this new lady can learn better ways of coping with this up and down roller coaster of a life?

I am sitting on my couch right now, staring out at a gorgeous day and the whole time my mind and heart are with Mira. It is also another Sophie's Choice....Do I stay here and get things done, take a nap, maybe a bath, cook some healthy food OR do I get my ass in gear, throw a granola bar in my bag for dinner, go to the hospital, get filled in on the medical updates, stand around Mira's crib for hours (don't get me wrong, she is a joy to hang out with and its always a blessing! But its also extremely exhausting!), and come home to a sink of dishes and a crazy dog who needs a walk and me, just a body with no energy.

Gosh, I sound like a whiner. I don't want to be. I am just starting to see that being a mom seems to always be choosing between yourself or your baby-is there any way to choose both? I have it in my head that having Mira home would help with that feeling of being pulled between two worlds, but maybe I would feel the same? It would just be in different areas.......

All I know is that I wish there was some magical way to fill my poor empty self up again....I wish there was some way to feel less of that sense of free fall/ungrounded/no time/emptiness wave. I am just so tired and worn out.

And yet, one of the most freeing feelings I've felt since having Mira is that it isn't about me anymore. It isn't about me, and Mira needs me. Someone needs me, and that gives me only a little wiggle room to fall apart for a few hours (maybe a day?), and then pick myself back up, put those pieces together and go play with her, go comfort her, stand around her crib for hours, make sure she is getting the care she needs, be active in the decisions they are making......

Can I take a nap first?

C'mon Discharge C'mon

C'mon dishcharge, C'mon!

Written May 10, 2012 10:56am by Amber Gannon Medina

A lot of people have been asking when Mira will be able to come home. I wish there was a date the doctors could give us, but it has been difficult to pin them down. In fact, I almost think they have about as much of an idea of when she will come home as we do. Yesterday was the first day we were able to talk to a doctor and get some a vague idea of what needs to be accomplished in order to high tail it outta this place! And if you have been reading my posts, I am so ready to be out of this hospital!

1.) Tolerate Feeds: Mira needs to be up to full feeds before they can talk about doing anything else. This is a slow process....Its pretty mind boggling what the dieticians do-the calculations they need to make in order to get her the calories she needs, while also making sure she is able to digest the type of nutrition they are giving her.

She started out being able to take breast milk, which was wonderful because she was able to tolerate it very well (very little spit up or tummy troubles), while also getting all the "good stuff"! This was working well until they realized she had a pleural effusion (fluid in or around her lungs) and had to switch her to a low fat formula. When Mira has an effusion that is caused by the high fat content in breast milk, she has always been switched to this type of formula, and usually has to be on it for 4-6 weeks. She also doesn't tolerate it very well, and when they fortify it, she tolerates it even less. I was confused as to why they would need to fortify it, but I guess they were really worried about her losing weight and because her liver is so enlarged (due to being on TPN (a type of fake nutrition taken through IV), they didn't want to have to put her back on that. So its the lesser of two evils....I guess. 

Although, Mira has been throwing up a good amount (maybe 2-3 times per feeding, which are every 3 hours), I still consider her a success! To have an empty stomach for most of the 7 months she's been here, and to all of a sudden be getting feeds in her tummy? I think she's doing great! However, she is still barely inching her way up to being on full feeds-I believe she will be at full volume once she's up to 80+ CC's (she is presently at 70).

2.) OFF her Milrinone:

Mira has needed Milrinone for most of her life. It is something that helps the squeezing of her heart, and most recently when they tried to wean her off of it, you could tell almost immediately she could not tolerate it. Milrinone also helps profusion (getting all the blood to the different parts of her body), and she needs sufficient profusion in order to digest her food. So they are waiting until she tolerates the full feeds and then they will wean her off the Milrinone and she how does does. I guess I kind of feel like this will be the "moment of truth" and I am hoping she has settled into her Glenn anatomy well enough to hold her own while being Milrinone free!

3.) WEAN her off the IV diuretics:

This seems to be a little dicier than I imagined. In fact, this weekend they changed her IV lasix to enteral lasix and the fluid around her lungs worsened. She wasn't quite ready for it. Mira has always had trouble with retaining fluid (now we know for sure whose daughter she is), and they call her "volume sensitive"-whenever she gets extra fluid, be it blood or now formula, she tends to have trouble excreting it. However, thank goodness she reacts very well to the diuretics! The IV lasix are a lot stronger than the enteral kind, but of course she cannot go home with any IV meds, so this is another deciding factor as to when she will be discharged.

4.) G-TUBE: Somewhere in this 1 step forward, 3 steps back mess of a straight and narrow and sideways path, MIra will need to get a G-Tube. I feel a little sad that she will need to get one, and even sadder that she will have to go back into surgery....Plain and simple, she doesn't tolerate surgeries very well (as we all know), and I don't want to tempt fate by putting her through anything she doesn't need. But she needs a G-Tube...She doesn't know the first thing about sucking and swallowing, so most likely she will never eat from a bottle. She has never been well enough to EAT, and the normal instinct we all have was lost on her. In fact, she will probably go from being fed liquids through her G-tube to eating solids. She is on the tentative schedule for the surgery in June, but the doctors are thinking she may be pushed back depending on how well she is doing with her feeds or whether they want her to be off Milrinone before her surgery.

I think by now everyone knows that when they try one thing with Mira, oftentimes other issues arise. I realize that each one of these hurdles could mean that another little hurdle comes into view or we find that the doctors need to take baby steps when their more adult sized steps cause her to regress. 

I have to admit, the last few days when they have been throwing the chest tube threat back and forth, I realize just how far we still have to go. And I also realize just how much I just want us to go home. Sometimes this long and drawn out journey feels like torture...But the threat of chest tubes also make me realize I cannot take what we DO have for granted-I am still able to hold Mira! She is happy and smiley and she looks so good. Most of all, it really does seem like this Glenn Anatomy is working for now and that the notion of imminent transplant is in the fringes. 

And how normal is this? Today, we are having our family pictures taken in the hospital! They have a wonderful charity that provides families with professional pictures....The last time they came by, MIra was too unwell to have it done, so I am very grateful she is making such noticeable and wonderful progress!

Thanks for bearing with me on this-maybe confusing?-medically update! 

This House is Not a Home

This house is not a home

Written May 8, 2012 9:42am by Amber Gannon Medina

This past week has been strangely frustrating and unsettling, and for once it didn't have to do with the hospital and Mira's progress. It had to do with our home. 

I keep finding myself amazed at how little of the everyday frustrations and tiny calamities it takes before I seem to go into high alert. For some reason I can handle things like my daughter having open heart surgery better than I can handle doing dishes or someone cutting me off in traffic. So when our landlord decided to give us one days notice that he would be having the wood floors in our downstairs flat redone, I didn't realize how much it would bring up for me.

For starters, I had no idea how bad polyurethane fumes are. After spending a day at the hospital (a very nice and easy going one at that!), I picked Pow up and headed home to find that the worst headache inducing smell was permeating our ENTIRE house! Not only had they sanded the floors downstairs, they had applied THREE coats to the entire downstairs....In fact, by just spending 10 minutes in our place, I knew we wouldn't be able to spend the night there. It was not my idea of a fun Friday night to suddenly have to find a place to stay at 7pm.....In fact, I was pretty furious at our landlords...

Being a renter has so many downsides...You feel a lack of control over your space. You end up never making it your own because who wants to invest in some one else's property? There is a certain age where renting just feels like you are turning your wheels and not getting anywhere.

Renting is the only experience of home I have ever had. I remember when I was 7 years old, my parents painted a rainbow on our rental house and were later sued in court by our landlord for "defacing" the property. I also remember starting an accidental toaster fire in another house and being taken to court once again by our landlord for our security deposit. And then there was the dog urine soaked carpet my parents finally ripped up on their own after complaining about it to our landlord numerous times. It was not our dog, and yes you guessed it, we ended up in court.

The idea of "home" has always been complicated for me. Spoiler alert-Parents: This is not anything you should feel guilty about!! As a kid, my family moved on average every 2 years. My dad was the general manager for Red Lobster, and it was their practice to move their managers to new markets every few years. Before the age of 10, I had moved from several cities to the next and had even moved to different houses within a single city several times. I have to admit, at times it was exciting and new to create a new life in a new city or neighborhood. Yet, I never felt I learned how to create roots, and our houses were places to live, never a home.

This lack of experience in creating a home has run into my adult life-I've moved 10 times in the last 14 years and have never felt at home in any of the places I've moved through. I admit it bothered me, but I always felt like I would learn how to make a home...sometime. Yes, sometime soon!

Then several things happened-in what felt like rapid succession-that really made me want to change my relationship with home. First, John and I got married. Suddenly, when I wanted to move not only did I have to bring another person with me, I had to bring all their STUFF. Moving became a lot more difficult and agreeing on a place we both liked was even more challenging. However, it became important because we were a FAMILY now. Second, John found a job with Amtrak and a crewbase in Milwaukee that he (and I) fell in love with. His co-workers became family and stood by us through many difficult times- a deep loyalty for Amtrak and the Milwaukee job in particular took root.

Last, but not least, our Mira came into our lives. Mira finally brought my fear and inability to establish firm roots to a head. It is no longer an option to continue viewing our home and neighborhood as a throwaway container we can move on from. We want Mira to know her neighbors, to feel like she can put posters up in her room because we will be staying awhile and when she gets older, to feel like she can invest in her community. 

Our wood floor debacle really hit home-or should I say it hit "not home"....John said it best by simply saying-we're too old for this (maybe there was an expletive added on to that).....And so once again, we may be on a house hunt (I know, I know we've done this before). However, this time its different- this time it will be with the full hearted intention of making a home with our daughter. One thing I did learn from our numerous moves as a kid is that a home is not just a place-its a feeling in your heart and its your family and community. We are lucky to have most of that covered- now its just on to finding a place for that love and family to grow.

Nurses Week

Happy Nurses Week (or the what would we do without you guys week!)

Written May 7, 2012 9:09pm by Amber Gannon Medina

John and I want to thank all of our nurses for the amazing job they have done throughout Mira's stay at the hospital.

A heartfelt thanks goes out to our primary nurses and buddies Jaci, Ann and Donna. What would we do without you?!! You care for our daughter like she's your own and we feel so blessed and grateful you are in all of our lives! A thank you just doesn't seem like enough. We hope you know how much we appreciate you! 

Happy Nurses Week to all the amazing men and women who save lives in so many ways!

Some Moments Are Fine by Me

Some Moments Are Fine By Me

Written May 4, 2012 3:17pm by Amber Gannon Medina

Today it's rainy and chilly and it's the kind of day you want to just sit on your couch and read Sookie Stack house novels. That last part might just be me. It's the kind of day you might want to keep your kids inside and read them stories or bake cookies while listening to the Sound of Music or Oklahoma soundtracks. Ok, again that last part might just be me.

There are certain days I spend at the hospital where I really struggle with overwhelming waves of GET ME OUTTA HERE! Most days I breathe my way through this very primal feeling urge, but other days I admit to letting my fantasies of Mira and the adventures we could be having on the "outside" run wild.....what kind of things would we be doing today if we could escape? Would we visit the inside exhibits at the zoo? Could we bundle up and take a walk with Pow through the misty forest at county grounds? Or would we go swimming in the warm pool at our health club? Any, heck ALL of those sound nice, but I think if given the choice, we would stay at home-singing and talking and baking those cookies until it was nap time.

I wish the hospital experience got easier. It really hasn't for me. And we KEEP. LIVING. HERE. Almost 7 months now. From the time I could create coherent thoughts in my head, I started a mental list of what's been keeping us alive while we are residents of 3 West. Although it goes without saying, I hope everyone who reads this never has to contemplate life in the hospital with their baby... For those who do, I am sure you'll create your own list...this stuff is so unique to every person.

1.) FIND THE BEST NURSES YOU CAN:

I am so glad that in the beginning I didn't know finding the right nurse(s) was so so crucial to your stay and to your baby's well being. I think If I had, I would have made all of are unit's nurses line up and interviewed them one by one. Having a primary nurse who not only is your child's advocate but who also fits in with your family is tricky. As chance would have it, the three best nurses-magically-found our way into our lives. In fact, I know it wasn't chance, it was the hand of fate and I am grateful for them each and every day. They not only make us feel like we are at home, they do so much more: They make John and I go out in dates when we need a break. They ask the doctors tough questions you didn't even know you should ask. They have taught us how to change a diaper, give a sponge bath, calm a crying baby, take a temp, put that crying baby to sleep.... And mich much more. They have taught us the hospital politics-when to push and when not to. WHO to push and who not to. They've comforted Mira when we couldn't be there. They do the tough job of watching Mira cry when they have to give her shots. Our nurses calm us down when we have outbursts and then they assure us we are doing our best. Nurses are what keep you going and if you're lucky they become part of your family.

2.) REACH OUT:

My M.O. has been to pretty much handle things that pop up in life on my own. I don't know if it's because I am an only child, but asking for help has always been extremely difficult for me. So when Mira went through her first surgery and people came out of the woodwork offering to help us out, I felt so out of my comfort zone. My initial response was to say-we are fine....don't worry about us! Of course we were not fine (really, we were a mess. Actually we still are!) and it was the first time I didn't have a choice about accepting help-we needed it. Once I opened my heart, I was amazed at how kind and selfless people could be. In fact, accepting people's love and support has changed me from the inside out. It has shown me what kind of person I want to be and it has really been a key factor in us surviving such a stressful and traumatic period in our lives. From being fed by meals people sent us to having people come see us when we were at our lowest point-we have been and continue to be overcome with love. I would say letting people in is essential to making it through something like this. I also believe that one of the reasons Mira has fought so hard is because she has seen how many people love her and what is waiting for her once she is outta here!

3.) ALLOW BREAKDOWNS:

How embarrassing it was to have my first breakdown at the hospital. I am a fairly private person and I hate to cry in public (even funerals)...let's just say I am usually private with my emotions. Most of that goes out the window when you're living at the hospital where your daughter is fighting for her life. Exhaustion, emotions and high levels of stress conspire to make you a babbling mess of anger, tears and explosions. Real outbursts are not like the scene in Terms of Endearment where Shirley MacLaine runs around shouting about pain meds for her daughter. My first out burst at the hospital was after weeks of stuffing down the pain and frustration I felt from watching Mira suffer. It was raw, snotty, red faced, visceral and so very needed. I would recommend being aware of that mounting buildup that always signals a good breakdown is impending and once it does come I would advise letting it wash over you without any guilt, shame or apologies.

4.) DO WHAT YOU CAN:

This will differ with each person, and it changed almost weekly for us. If I could explain it another way, I would say that it helped for me to try and take control of at least something in an environment where I couldn't do much for my daughter. In the beginning, simply pumping breast milk for Mira was a way to feel like I was helping. At that point we couldn't feed, change or even comfort Mira and I felt do darn useless. Pumping made me feel like someone's mom and like i was helping. Later on I learned that researching and networking was a way I could feel a part of Mira's care. I found questions I wanted answers to and also discovered I liked not feeling so blindsided when new things popped up. It's true, sometimes I felt overwhelmed by the things I read about and hated thinking about what Mira MAY have to endure, but i felt better knowing I would be ready to ask the right questions and face what needed to be done.

5.) TAKE EACH DAY AS IT COMES

This is so overused and cliched, but maybe that is because most of us can pretend there is another way to live. Thinking any of us knows what's coming our way or trying to control our fates is a waste if energy. Yet, there are many times I've tried to imagine the horrible things that Mira might have to endure in her lifetime or I would feel overcome with the fear of losing her. Each time these feelings got the best of me, I would try to bring myself back to that moment, to the very second I was living in. No, Mira was not at this moment facing a transplant, no she was not on ECMO...of course, those are always possibilities, but so are a million other things. Mostly, the moments I am in with her now consist of comforting her, getting her to smile, singing, leaning in to inhale her sweet milky smell...it is a constant struggle to stay there and only there, but one of the blessings we have encountered on this journey is not having an option in thinking any other way. 

I realize I have more experience with hospital coping than I ever wanted to have, but I am far from being an expert. In fact, I would love to hear what other people might add to this list. If you have had a child in the hospital, what helped you get through it? Having a baby or child need hospital care for even a few days is out of this world difficult....

So instead of baking today, I brought a cupcake in. And instead of singing "Maria" from West Side Story, Mira and I are rockin out to music from her little handheld musical toy. If I take my own advice, if I stay in the moment, it's a pretty perfect day.