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.

Normal

Normal

Written Apr 28, 2012 6:37pm by Amber Gannon Medina

I can't believe a baby can hurt my feelings. I have a pretty tough hide but somehow a tiny little person can crack right through it and leave me feeling like I am 10 years old again and a mean girl on the playground called me fat.

Mira is doing so well. She has all her chest tubes out. She is very near to being weaned off her methadone. She is playing and smiling all day. Her oxygen SATS are looking good (even got up to 89 today! That's a record!). Mira (and us) are finally getting a reprieve. Big sigh.

As Mira gets better I find myself feeling like the lines are blurred between everyday problems a "normal" mom would be encountering and the hopped up emotions a mom with a baby in the ICU for 6 months is feeling. As Mira starts to get better, I feel like I don't know which one I am, until I realize maybe I am both....and that in a way, I feel like it's a situation that calls for some major adapting on my part. 

The episode that brought this to a head happened today. John was playing with Mira and she was the poster child for Ms. Happy baby. Feeling caught up in the moment, I came close to her with the intention of planting a big kiss on her cheek. Instant and Total melt down. My attempts to soothe her didn't work and feeling emotional and useless, I left to go to the bathroom. I took it way too personally.

I wonder if other mothers have had similar experiences, and I imagine they do. It's just that I already feel like I am a wet raw piece of meat with every emotion just hanging out there for everyone to see. 

I am starting to see that I might be better at handling the tough stuff. Surgeries, procedures, keeping track of Mira's medications and learning about different aspects of her condition and treatment. Handling the feeling like I am doing everything wrong is a new emotion and I cant say I like it very much.

My new mantra when I feel like this is-Mira doesn't need a mom who takes things personally (especially from a 7 month old), she needs a mom who comes back to her crib and listens to what Mira wants. And that seems like the trick -figuring out who Mira is and what she wants and needs.

It's been such a horrible roller coaster-we have been in survival mode for so long that it's been impossible to SEE Mira. She's been hidden from us with wires and tubes and drugs. Her spirit and personality are coming out in full force and I have to say its going to take some patience, reverence and thick skin to let her just be. The funny thing is that the parts of her that haphazardly sting me, are the ones I've had a hard time dealing with in my self. 

And that IS the normal part, isn't it? Sometimes kids bring out in you the very things you've been trying to hide for your whole life. I look forward to finally embracing my whole self along with allowing Mira's unadulterated spirit to soar.

Most of all I welcome these "normal" problems-what a blessing it is to worry about this instead of the horribly serious issues we have been struggling through. Amen!

Ramblings

Ramblings

Written Apr 24, 2012 3:32pm by Amber Gannon Medina

I sometimes think having a sick child gives parents an insight into a pure uncomplicated view of life. That doesn't really make sense to me to write it that way, but I am starting to feel like the undeniable parts of life we push against and deny, become facts of life you just can't fight when your baby is sick.

There are snapshots of life that I see clearly now that I would not have seen before having Mira.Today I came in to the hospital only to be greeted with a huge yellow truck that was furious I had passed him while he was parked and blocking the road. He followed me down the road and trough the parking ramp blasting his horn with indignation. Instead of my usual screw you response, I almost immediately felt sad and empathetic. How many times in the past six months have I wanted to do that same thing after hearing a bad update on Mira or when I was tired of yet another day at the hospital? A lot. Numerous times. I felt so badly that this person was most likely experiencing a difficult moment as well.

Seeing all the families come in and out if our unit. Seeing them experience heartache and joy and at the same time to also BE one of those families...well, it gives you untold amounts of hard won empathy and insight. I no longer judge parenting decisions of others. I no longer feel pity for kids who are "different". I let little problems roll right off my back. I feel badly for people who act out against little Toyota Camrys.....there really isn't room or energy to do it any other way.

Part of this new perspective also brings an insane amount of patience with it. If I had to give my opinion on the one trait families of sick kids must nurture, it is patience. My natural inclination has always been to hear bad news and then think-of course! Of course this is happening to me. Everything bad always happens to ME and this is how it's ALWAYS going to be! I actually look back at how I used to think and want to laugh. How short sighted and immature it was.

After spending 6+ months in a cardiac ICU, not only have I seen firsthand that this kind of thinking isn't true, I have also seen how quickly bad news turns to good. And good news back to bad. Nothing is ever the way it's always going to be-good times never last and neither do bad times. I might have found that disturbing before this but have recently found it immensely comforting. It has enabled me to be flexible and to get through the bad times (like these past three weeks of Mira doing poorly) by knowing things would change. It also helps me not throw my hands up in despair when she's been doing great and suddenly has a set back.

All of us in this world suffer heartache in one form or another. Some experience more than their fair share and others may seem to the outside world to glide on by-but I truly believe we receive the troubles we are meant to experience. I look at other families with sick kids and think-I couldn't handle that! But of course I could, I am just not supposed to. I am supposed to handle Mira's journey and I feel it's something that I've been waiting to do my whole life, that somewhere in the depths of me there was a little kernel waiting to burst with all the knowledge and strength I need to get through this. I am not saying this because I think I am special or different-all of this have our kernel in us. I would say don't shy away from the things in life that require those little kernels to burst. I am starting to see the rewards we gain from facing these hurdles are great.

I hope I don't sound pretentious here. It's just sometimes-when I look around the hard parts or have people helping me so I am not in burnout-I feel so blessed to be facing this journey. From the way it's brought so many wonderful giving people into my life to how it's taught me to focus on the important parts and leave the petty superficial things aside-I have moments where if given a choice I know I wouldn't choose a different life. This feels good to say because there was a time where all I wanted was a normal baby and a normal life and I was consumed by bitterness and anger that I didn't have any of these things....I am glad that those are now just moments of weakness surrounded by joy that I have just what IS.

The patience is crucial to realizing that if you stay in the moment, you have everything you need. The other day Mira was having a really rough afternoon and I was facing what felt like the millionth hour of rocking her while stopped over the bed In a really uncomfortable position. I started wishing I could go home and i found my rocking was turning robotic.....until a thought hit me. I get to ROCK my daughter. I can experience the joy of holding her little head in my hand and seeing her sweet eyes close. I have the privilege of wiping her chubby chin (full of spit up) with love and tenderness. What more do I need than this?

I don't think I would have been able to be this kind of person had I not been forced to go through this. And believe me, I don't want to sound like I am perfect or that I have it all figured out. I am still terrified that Mira might have something more wrong with her heart. I still hate coming to the hospital most days. I get mad at the doctors. I feel exhausted when I think about Mira's uncertain future.....

I am just starting to see that I am SUPPOSED to be feeling all those things and I am meant to feel the joyous parts as well. 

I want to thank you all for reading our posts and for your guest book and facebook messages. You are such a huge part of the joy in this journey. You have come to the hospital when we were ready to drop dead. You told us we could do it! You listened to me complain. You helped take care of our daughter and loved her like she was more than just a job. You've stuck by us, didn't judge us and continue to give us what we need to keep going.

So I will say it again. I would not choose any other life for us. It is full of joy.

Waiting

Waiting

Written Apr 20, 2012 3:02pm by Amber Gannon Medina

It's always gone like this and so surprises don't surprise me anymore. I also have started to consider what some people would call back steps to instead be blessings. If you want to be cynical about it, you could say my bar has been set so low that sometimes its too easy for me to see the silver lining in the clouds.

Mira had been inching along. A few days ago she started to look a lot better. A lot. People even got a little excited. I felt relieved that the urgency to do a cath or even an echo died down because she was looking so much better. Out of the woods.

Then she slept. We chalked it up to being tired from not sleeping for 36 hours. yesterday she slept some more. Today her doctors felt she was too sedated and cold turkey stopped her sedation medication.

It all sounds straightforward but there is a lot of standing outside of bedroom and discussing. Her primary nurse mentioned to me she didn't think she looked quite like herself. I notice that her oxygen sats don't look as good. And of course I chide myself for taking that sigh of relief because it will never be straightforward with Mira, never a linear line. I've found myself knocking on wood everyone I think or say something hopeful about her progress.

John and I have a day. One that we somehow thought about together without discussing it. May 21st. May 21st she will come home? Yes, that's what the day was in our minds. 3 weeks ago we both blurted out we thought we would bring her home then. So maybe we should start a pool, bets....

Days like this come out of nowhere for me. Days like this I feel like a raw piece of meat. Not pretty or very nice. I blurt out the first thing that comes to mind and have little energy to explain myself if what I say comes out too harsh. I find myself pacing and having a difficult time enjoying Mira. Most days I feel like this I wonder if it's a coincidence that I wake up with a migraine and that it doesn't go away. Which causes which-does the migraine cause the rawness or the raw feeling cause the migraine? 

Every once in awhile someone mentions something about doing something (a therapy or medicine they give Mira) and I perk up when I hear them connect it to her going home. I don't know if it's positive thinking in their part or people really do see the light at the end of the tunnel....it's still a strange nether-region to exist in. During her last recuperation everything was leading up to this surgery and that was a different kind of feeling. This one feels like I have to make myself a hare instead of a turtle. Slow and steady wins the race. I am constantly checking my expectations.

Life is still the hospital. Life revolves around hearing good news and bad. Of coming out of a sterile white washed space, only to realize it had been a beautiful day outside. Most of all it involves waiting waiting waiting. Waiting is harder than I imagined.

Stand Still

Stand Still

Written Apr 16, 2012 9:20am by Amber Gannon Medina

It has been very quiet at the hospital. We are just. Waiting.

I know I've tried in so many ways to explain how long and exhausting our day at the hospital can be. John said it perfectly last night-emotional exhaustion can kick physical exhaustion's ass. I guess I haven't been able to describe it because I don't even quite understand how spending a day in a hospital strips you of SO much-energy, fresh air, interactions with the "real" world, sunlight....There is an absence of time and before you know it either a minute or many hours have slipped by and you never know which it is until you look at the clock.

In my mind, April 15th was supposed to be just one of the many days that Mira was supposed to be getting better. We imagined that maybe (almost) 3 weeks post-Glenn Mira would be getting back into the swing of things. We imagined her having physical therapy (one of her favorite exercises was when the nurse would sit her up with a pillow for a desk and she would get to put her chunky baby arms up on top of it. She likes to survey the world going by her hospital door in this way). We thought she would be facing eating challenges, but that maybe she would have gotten her G-tube already. We imagined we would be going for walks in this nice weather. Maybe we could have met with the discharge committee to talk about home health info and clinic visits? 

Three weeks ago-can it be possible? This was the optimistic outline I had before Mira's surgery. Once it was clear Mira was taking the longer road again, I revised my expectations. OK, I thought, maybe in two or three weeks we will just be taking her pleural chest tubes out and will be able to hold her again? Maybe she will just be eating very little amounts, and of course she won't have her G-tube yet? And maybe she won't be back to her old slightly smiley but very intense self again, but she will be able to watch her shows or bird mobile and maybe hold some of her toys?

All of this thinking is part of what is behind our emotionally exhausting days...None of this is happening. None of this even seems close to happening. I had mentally prepared for Mira to want to take another route than any we had envisioned for her, just like she always does. I just didn't think it would be so unknown.

Nothing has prepared me for how difficult it is to see my daughter in pain. Not just for a minute or two when she gets her twice daily shots and not just fussy periods throughout the day. She has been in pain for much of her waking moments.

Mira also seems sad. She seems like she hurts. Like being awake is painful. It hurts me so much to know that in these past few weeks, Mira has not been able to enjoy much of anything. She is either sleeping (in a very doped up stupor) or awake and crying. Once again, she is either angry or in pain enough to scratch her face up pretty badly and so she wears the mittens of shame.

What really sticks with John and I right now is how little of a life Mira has had so far. It may be our warped memories, but we can only really recall a few weeks (in total) where Mira was (mostly) left alone and felt well enough to play and smile. It breaks my heart to know that she turns 6 months tomorrow and she hasn't been able to enjoy much of anything. In fact, when I feel like making myself really sad, I list them:

Hasn't been able to go to brunch, doesn't have the strength to sit up, hold her head up on her own, roll over, never taken a ride in a car, never taken a nap with mom or dad, no baby wearing, never eaten by mouth, no walk outside in the stroller, hasn't seen flowers or sat in grass, hasn't been to church or participated in a family holiday, never passed around from one loved one's arms to another, never been to a park or seen a dog, hasn't been home or seen her nursery, can't start eating solids, never met another baby, never traveled in an airplane to a new place, never played in a sandbox or dirt, never smelled the air after a storm, never had a bath, has never been carried around the house.....

What are we doing? What are we up against?

We are back to basics here. What is more basic than simply trying to survive? That is what Mira is up against right now, and that is all she seems capable of doing.

This is all compounded by the fact that the doctors don't know why Mira is not getting better and in order to figure that out, we are facing yet more invasive and dangerous procedures. 

When I take away all the fear and anger, it all boils down to simply wanting Mira to be happy and wanting her to experience some comfort and joy. Wanting more for her than mere survival and pain.

I don't want to be a "complainer". I've always hated when people continually see the glass half full. However, I don't know if I would call where I am at or what I am doing as complaining. It seems much deeper than that. It is more of a plea for my dearest Mira. A plea that she is able to see why life is good and worth living. A call out to GOD for her to stop suffering quite so much physical pain and discouragement. A prayer for her to be able to LIVE life! This pain and suffering, this hospital stay. It has seemed endless......

The one thing-and probably the most important-that Mira has known in this limited life of hers is true and great love. You have all either flown your love in to her, brought it with when you visited, sent it to her in packages, left it in messages and prayed it for her or buoyed us up so we could bring it with us on our visits. I am truly grateful for you all and for your mind numbingly endless support. Seriously, every time I am sick of the sad updates I post, you all take time to write something that keeps us going another day. 

If I had to guess, I would say Mira knows life is worth living because you and your love are all a part of it.

It Gets Worse Before it Gets Better?

It gets worse before it gets better?

Written Apr 11, 2012 2:19pm by Amber Gannon Medina

I find it strange that my emotions or my "place" in this journey never feel right. When I feel like I am supposed to be handling everything well or when I expect to be a mess, I always seem to be feeling just the opposite. 

I never know if I sound like a broken record on this blog, so if I repeat myself please just skip forward until you find me say something new. Its been two weeks and a day since Mira went through her second staged surgery (The Glenn-I feel like that surgery should always be in CAPITAL letters....) and instead of feeling relieved and happy that she is doing progressively better and better, I feel spent, slightly broken and emotional. 

I don't know if its the shock of going through such a stressful week wearing off or if some sort of new reality is settling in, but it has been tough. The first few weeks of Mira's post operative recovery was mostly us trying to get her through some dicey issues-severely high vascular pressures which resulted in two surgeries instead of one, different breathing problems (collapsed lung, pocket of air in the lungs, etc), extubation, chest closing, chest tube drainage and most recently low oxygen sats. 

It has felt never ending, and honestly I think if I had to boil down my emotional state, it would have to do with recognizing our new reality. I have enough experience and heard enough stories of Hypoplastic kids to know that most likely our life will never be straight and narrow. It will never be worry free or a given. 

When you are stuck in a hospital for six months and you are waiting for that magic second operation that is supposed to make your daughter "all better", the implications of that surgery has major implications. In the weeks leading up to Mira's Glenn, this surgery meant a chance for freedom, an opportunity for Mira to be her version of "all" better, for some of her problems to go away. 

Yet, Mira's path doesn't seem to ever follow where my expectations lead. This fact is a blessing, it is frustrating and sad, it is sometimes funny, and mostly it is scary. 

In utero, Mira was only supposed to have a coarctation of the aortic arch (at one point, we were even told she might not have to have open heart surgery!). Once born, it was a possibility that Mira would be a candidate for a two ventricle heart. Once we knew Mira would receive the Norwood, she was supposed to be an excellent, strong candidate. Initially, her doctors felt she would be able to go home around Thanksgiving. 

Every step of this journey has been more difficult than anyone ever thought. 

It has been especially difficult seeing Mira's state after this 2nd surgery. I am sure it is too soon to really know, but Mira seems different. She seems to have matured and aged between the time she went in for the Glenn and the last few days. She seems wary and (am I projecting this one?) sad. Her eyes don't connect to mine the way they used to, and her happy waking hours are pretty far and few between. I realize she is still recovering from a numerous intense surgeries, and so I hope that she is taking her time to get back to maybe a different version of herself. 

I miss her though. I've been spending less time at the hospital and of course I feel horribly guilty. I can't describe the way I have felt being there lately-if I could boil it down into a single description, I would bring up the metaphor of a rat in a cage. There has to be some way out, some sort of different scenery to see, a way to get to that piece of cheese. Instead, I spend my days there feeling like I am ramming my head into the same four walls while I wait for Mira to wake up and then once she does I wait for her to seem to recognize me. 

On top of all of this, we are being bombarded by confusing messages about Mira's next steps. On one hand, I feel like doctors are telling me that there are still so many more hurdles we have to jump over before we can even begin to talk about discharge. After talking to her doctor yesterday and discovering they will have to address her low oxygen sats by possibly doing a cardiac cath, today when I received an update from her nurse we found out she is having issues with Chylous (when the small amounts of milk she has been given in her gut leak into her chest cavity...). 

On the other hand, people have begun talking about her going home. We've been warned that we might be sent home with Mira on oxygen. That we will have to learn her feeding tube and her meds and that we may be sent home having to give her her twice daily shots of lovenox (a blood thinner). She hates those shots. Those shots bruise her entire upper legs. For whichever reason, I absolutely loathe the idea of giving her those. I know, I know, you do what you have to do for your children, right? I would move the earth for Mira if that's what was needed, and in fact because of my limited scope and experience, that is what I feel like I am being asked to do here. I feel like I am asked to stretch myself to my outer limits, and then when I do that, I am asked to do it again.

I would love a break. I would love it, but I am afraid I wouldn't know what to do with it. Every break we have gotten, has been brief and followed by a shocking scary reality check.

I don't want anyone to think I am feeling sorry for myself or my family. We are blessed in more ways than we struggle. I couldn't bear to think of doing this without John (or Pow) or our friends and family. We are blessed with excellent care for Mira and the means to pay for it. We are close to the hospital and so are able to be at home throughout all of this. We have an amazing daughter, who is the strongest and bravest fighter I have ever met or seen (and I watch UFC with John-those guys got nothin on her!).

Its just that I am waiting. Waiting to finally not be surprised or scared by how difficult this is. Waiting to feel like-wait, we've got this! Waiting to not feel like a truck ran over me. 

Honestly, the denial I rely on can be more trouble than its worth, but it does get me through the toughest times. In fact, that very same denial had me imagining life after this surgery as our reprieve-and maybe its still coming. However, my new struggle is-how can I be OK if life doesn't have what I envision as a reprieve? How can I accept this new way of life, without feeling stressed with every hiccup and unexpected detour? 

Most of the time, I find myself feeling negative or scared or worn out and I find a way to rephrase the thought. As in-THIS WILL NEVER END (This one has crossed my mind a lot) rephrased to, ONE DAY AT A TIME! Yet, sometimes I try and try and each time I try it pops right back to-THIS WILL NEVER END! 

This experience has taught me what an imperfect human I am. There are some days I hate people whose lives look perfect. There are some days I hate having to go through this. Some days (like today) I try my hardest to go to the hospital and instead sit on the couch intermittently crying for most of the day. I guess instead of fighting it all the time, or trying to figure out why this tough phase is rearing its ugly head, I am just going to let it be. I am just going to let it be, and trust that GOD will help me find my way back to being the person I am at heart-loving, giving, and not spiteful. 

Inching Along

Inching along

Written Apr 10, 2012 3:50pm by Amber Gannon Medina

I hate to admit I am a glass half empty gal. It's something I've struggled with my whole life and maybe if I were more positive I would call myself realistic instead. 

My experience with Mira has taught me how difficult it is to get through life feeling like the other shoe is always going to drop. However, my way of thinking has been tested time and time again and it's been proved-with Mirabelle, the shoe is either going to drop, has dropped or is in the process of dropping.

These past few weeks of post operative recuperation have been rough. A doctor of Mira's only recently admitted that Mira had all her docs very scared the first few days after her Glenn. I've taken to hating the way doctors only admit this after the fact-it leaves me wondering when they are nervous for her and aren't telling me, and I end up speculating and feeling very suspicious about what they aren't saying. I feel like I need to be a blood hound who sniffs out the doctors' and nurses' fear so I can be prepared for the nasty truths.

Besides the first few days when Mira apparently had everyone scared ( I know I was terrified, now I know everyone was at least concerned) she is inching along. They've been able to extubate her on the first try, take out her two medial stinal (spelling!!?) chest tubes, wean most of her sedation drugs to off or a lot less of what they've been and start her on feeds....and throughout all of this we have been waiting for her oxygen sats to start climbing.

Even with my newly acquired knowledge of oxygen sats, I knew the Glenn was supposed to dramatically improve Mira's numbers. When interstage (time between Norwood and Glenn surgeries) kids' saturations begin to decline, it's usually a sign its time for their Glenn. 

For parents of hypoplastic babies, the Glenn seems to be this magic word. We are often promised that life can be normal and that there are very few limitations for our babies post Glenn....for parents whose babies have to spend that interstage period at the hospital, the promise of going home feels like the carrot being dangled in front of your big donkey nose. It's the light at the end of the tunnel. 

The Glenn creates a much more stable anatomy because it gets rid of the shunt that's created in the norwood surgery. Once that shunt is gone and the Glenn anatomy gets used to itself, most kids oxygen sats hover in the 80s and some even hit the 90s. 

Since Mira's Glenn, her oxygen sats have stuck around the measly upper 60s/lower 70s mark. Yes, of course they have. Mira doesn't like to do anything the easy way.

Day after day, I have been waiting for them to magically start climbing and they have very unmagically stuck in that not so unacceptable range. 

I was able to talk to one of Mira's awesome doctors about this and not surprisingly they have already been discussing this very phenomenon. Her doctor predicts that they will wait until Mira has her final 2 tubes taken out and if her sats still fail to rise they will look into a few avenues.

One of the possibilities she brought up was that when Mira's pressures were high, her blood vessels may have diverted themselves so that they emptied below her lungs. It's amazing what your body does in order to survive. However, if this is the case, Mira is losing out in oxygenated blood and this could explain her low oxygen sats. 

In order to diagnose this, they would have to perform a cardiac cath (another invasive procedure) and if this is what they found, they would hopefully be able to bunch the frisky vessels together and in essence would tie them off.

This kind of news is not easy for a half empty glass lady and it's especially difficult for a mom who has already waited six months to bring her baby home. 

It seems like the hospital stay is marked by various periods. There are the day in day out periods where you go to the hospital every single day and don't even think about it. There are the I can't take it periods where you feel like your head will explode if you have to spend one more minute in that room. There are scary periods where you live half in and half out of your body because of the fear..and then there are the periods of defeat. These seem to be the worst. Strangely, this is where I find myself lately. 

It's not a place you can allow yourself to be for very long and really is a very indulgent way to go about things. And yet sometimes, when you've been hoping for the magic "cure" and you realize there probably isn't one, defeat is what you really truly feel. When all you want is for your daughter to be happy (no shots, puking, dressing changes, procedures) for one stinking day, and you realize it probably isn't going to happen fir awhile, you feel incredibly defeated.

Of course, I will have to get myself out of this place at some point. And I realize I am being melodramatic and whiny....I just don't understand why we can't catch a break. I want something to be easy. I want some glimpse of normal life that's on it's way. I want out if this hospital.

Bubbles

Bubbles

Written Apr 8, 2012 1:54pm by Amber Gannon Medina

I remember the first time I met another mother whose baby had the same kind of condition Mira does. She had been at the hospital for a very long time and her son had just had a heart transplant. She was so warm and open and most of all very positive. I walked away from our conversation wanting to keep as much distance from her as possible. When I saw her, I went the other way. I just wasn't ready.

Support groups leave me with conflicted feelings. Sometimes the only way to get through a difficult time is playing pretend. In the beginning of Mira's journey, I was ok with hearing all the success stories where the kid makes a miraculous recovery and does better than anyone ever thought they would. I needed to hear those stories, and I still do. However, very recently I've started to find comfort and strength in knowing all I can about what we may encounter in the future. I also realized Mira has gone through a lot of the very things I was afraid of hearing about-extended hospital stays, complications from her surgeries too numerous to count (strike that! Operations themselves too numerous to count!), feeding issues, developmental delays....granted, there are still so many more difficulties we may encounter along the way-heart failure, transplant, surgeries, etc, but I am no longer afraid of them like I was before.

And I wish I had gotten to this place of limited acceptance earlier than this. I am starting to see there is a whole world outside of Mira's room. I am noticing other parents seem to know each other and keep up to date on each others stories. Even more surprising to me, they want to tell me about their kids struggles and triumphs. There is no pity or surprise when I mention we have been here 6 whole months or that Mira has another surgery ahead of her in a few years. Instead of swapping stories about what kind if solids we have introduced, other mothers give me tips on what kind of food pump I should buy or what kind of g-tube their kids have.

Hearing other stories also make me realize Mira is just one of many amazing kids who face a unique struggle. There is the little boy who wears his super hero cape while he is walking around with a machine that keeps his heart beating. Another little boy has learned how to use the nurses voice pagers to prank call doctors and there is another baby whose mother gave us a handmade knit cap for valentines day. There are do many families who face amazing hardships and still find the time and wherewithal to give.

I've been so wrapped up in trying to keep Mira alive and learning about her condition, I've been missing out on opportunities to accept other peoples' knowledge, warmth and support. I've also found (in my insane flurry of research) that once Mira gets older she may find comfort in being around other kids who have been through what she has, other little people who have gnarly chest scars. Its time to start opening up our little bubble here at the hospital.

While I will always be an introvert who loves solitude and alone time, I see that Mira's journey requires more from me. It has widened my circle of family and friends and taught me I can't do this alone. I am starting to see we are not the only parents who go through heartache and sorrow while we watch our babies suffer. There is still so much I will learn from this experience and so many people I will learn from. I need to open up.

Happy easter everyone!!

Six Month Mark

ritten Apr 6, 2012 5:41pm by Amber Gannon Medina

We are closing in on 6 months of hospital living and I still haven't figured out how to live a life outside of this place Mira calls home. I would like to give my spiel that any good mom would give-this place has become our second home, mostly because wherever Mira is, is where home is. Or maybe I would say that the nurses have become like family and so in turn the hospital is like a second home. Although some of these sentiments are true-our nurses are like family and Mira is my home-this place will always be the building (germ infested and sick smelling) that I feel comes between me and real life.

The first week Mira spent in her little CICU room I didn't know how I could handle being there day in and day out. I asked God to give me the strength to come back day after day-to a little space that felt like a prison. I condemned foolhardy and sentimental blog entries of parents who MISSED the hospital after they left! Of course now i see that condemning a parent of a NICU baby for anything they feel or say is ludicrous (we feel and say a lot of very extreme things). However, not a day goes by that I don't wish for home-our cushy couch, distractions, yummy essential oil smells, a place to receive visitors, a room for Mira to sleep in undisturbed, and most of all a place to let our guard down and to be ourselves.

Don't get me wrong-the nurses and doctors (Poor doctor Jeremy has gotten the brunt of our outbursts, nice guy that he is) have seen us at our worst. Crying, yelling, throwing things, mean gossip, passive aggressive backlashes, anxiety attack pacing-we have done it all at the hospital and in front and TO said nurses and doctors. For two introverted and very private people, this is a big deal and sharing emotions and fears in a public place can at times feel very unnatural and exposed.

Just recently I've also realized that if Mira had been healthy and at home we would have just started hitting our stride. I imagine we would have gotten some sort of a schedule down and we would have maybe started to feel like we could begin to reconnect to the people we are outside of being parents. The lady who loves gardening and yoga and the guy who is obsessed with MMA and likes to hang out with fellow railroad nerds. 

Mira's trajectory has left us with no chance to get used to ANYTHING! I imagine that a lot of parents feel that way about a new baby-just when you get used to one sleep pattern, another one comes along. But I also imagine if faced with that struggle, I would lament my few hours of missed sleep and be able to get used to feeling tired. After all, a crazy sleep schedule wouldn't kill Mira.....

Between the surgeries, struggles with reflux and vomiting, infections, inflammatory responses and extubations, I am having a hard time feeling like anything is a given and each surprise seems more like a threat. Every time I walk into the hospital, I will myself to not be surprised by what I find. 

It's going to sound so simple and maybe petty, but the hardest part to accept ga been our limitations-namely the tiny little space around Mira's crib where we perform ALL of our daily tasks. When Mira has melt downs, some times I day dream about all the room and distractions I would have at my disposal if I were at home. Mira is Upset!? Maybe Mira would fall asleep during a walk in the stroller? Maybe a ride in the car? Maybe just holding her and pacing the living room would soothe her? Maybe putting her in my ergo and doing some chores would knock her out?

When Mira is mad at the hospital, I have 4 things at my disposal. A bouncer, a swing, a tv that swings in OVER the crib and my body. I can rock her, I can bounce her and I can hold her-all of this no less than a foot from her bed (and her bouncer and swing go IN her crib!)

Ok, ok, I know how many weeks I was pining to hold Mira in my arms (and I am once again going through that), but the cords and oxygen and attachment to a crib are all so difficult. One word that describes how frustrating it is and one I never thought would frustrate as much as it does is the word limited. I feel so very limited. It's not something I am used to feeling and one I don't think I will ever be comfortable with.

As our time at the hospital comes closer (although I still anticipate being here another month to two months) I do realize the ways that we are lucky that we have spent half of Mira's first year here. First of all, the nurses have taught us ALL the best tricks! I've learned from the best of them how to expertly change a diaper, soothe a screaming baby, give a massage, bring down a fever, deal with cradle cap and teething, and so much more. I've been able to sleep through the night and have had the best babysitters you could ask for. I didn't have to struggle the feelings of isolation and loneliness new mothers talk about. I've also gotten pretty close to becoming the closest I will ever come to being an expert on my daughter and her condition. There is so much new lingo I've learned I should get my associates in a foreign language. I am particularly grateful for this as I am sure it will make me a better advocate for Mira as she gets to live her life with a heart condition in the "outside"world.

It's certainly not all negative. However, if I never had to find a parking spot here, wash my hands/use sanitizer every 5 minutes, eat the food at cafe west, be in Mira's hot stuffy room for hours on end or deal with those damn parent badges-I would be a lucky and a lot saner woman. 

The other day a nurse and I were talking about how I feel this experience has the potential to bring out either the very best or the very worst in people, and that we have a choice in which one it is. She very wisely said she thought it could bring out both, and I realized how right she was. I've been both the very best and the very darkest version of myself in this place. I've comforted people and yelled at old people who walked too slowly through the skywalk. I've learned a lot and then felt I knew better than the doctors (ok, I still stand by some of the "natural" remedies I use!). I've felt such love and warmth for some docs and nurses and admittedly great contempt and vitriol towards others.

So maybe this place is like basic training for life with a heart patient child? Who likes basic training? Who actually enjoys getting yelled at and running every day? Ok, don't answer that....maybe some of you do.

In the end, this hospital stay will be the most obnoxious and annoying, but also humbling and humanizing way to get a crash course in the new life we will embark on. It's been a place we have been surrounded by dozens of other families fighting the same sort of fight, and that insight will keep me from ever feeling too alone in this. With all of this in mind, I can honestly see this place in a different light. I don't think you could ever get me to say I enjoyed this experience, but I will say it's yet another blessing in disguise and I am starting to see just how rich life is with the kind of blessing that gives you more than just happiness.