Surgery Hangover

Surgery hangover

Written Apr 1, 2012 9:33am by Amber Gannon Medina

I forgot how difficult Mira's recovery period is. I forgot how everything that happened before crashes down on me, and the aftermath is almost as difficult as the surgeries. Maybe even more.

Yesterday was really rough. We went to the hospital tired and happy to see Mira and we left discouraged and feeling helpless. For instance, yesterday Mira didn't really want to be touched-by anyone. And when I talked she tried to wake up and would get really agitated (which sometimes necessitates drugs to calm her down). So you feel like you are doing more bad than good being there. Yet, the nurse said she calmed down better and faster when we were there to talk to her.....It's just so difficult to not be able to do anything for her, and to see her so sedated and when she is not sedated, to see her in pain. Of course, the worst part is not being able to hold her again....I end up pacing the room (and there is not a lot of room to pace) and feeling like I need to "break out". 

Before Mira and this experience, I had never really experienced serious stress. My parents had divorced, I had moved, I had gotten married-I had hit a few of those experiences on the stress continuum. However, for me personally none of those have compared to having to go through an open heart surgery with your infant daughter. I've found myself in new and uncharted territory, and my mind and body are finding new ways to survive it. 

For one, my mind doesn't seem to work "right". My thoughts either seem to go through this long conveyor belt-factory line before they pop out completely jumbled and slightly incoherent. Or they come out of my brain before I've had a chance to review and filter them. Either way, I sound confusing and out of it and I am sure if I was conscious, I would feel embarrassed.

I am finding that "being out of it" may be a useful tool in getting through this. I've always considered myself a somewhat grounded person and so finding myself floating through these days in a bubbly cocoon is somewhat disconcerting. Yet, I have the feeling that it is where I need to be to stay sane and to find relief. It is warm and safe there, and when I am in there I mindlessly play bejewled and let the kitchen dishes pile up. 

When I have to come out of that bubble its HARD. Even just having a conversation with a nurse or with a friend takes so much energy and brain power that I feel like I could take a 5 hour nap after. In fact, I feel like I could sleep an entire day and still feel tired. 

And so this exhaustion may play a role in why Mira's post surgery recuperation is so difficult for me. Going through this post op recovery and rehabilitation seems more daunting to me than the first time around. Knowing what I am in for makes it seem that much longer and difficult and sad. Really, if I knew how long and tiring it would be the first time around, I don't know if I could have gotten through it (so thank goodness I didn't!).

Each one of these is a hurdle we overcame the first time-and it was long and stressful and bumpy. And we have to go through it all over again.

1. Closing her chest (it took multiple attempts and a final very scary nail biting successful attempt before Mira's chest was closed the first time).

2. Removing her chest tubes. She currently has 4 chest tubes, and they are BIG. The nurses have told us that these are one of the most painful parts of recuperation. When Mira coughs or moves or even breathes, she feels them in her tummy and chest. The first time around they were in a very very long time. First she had horrible drainage. Then she had pleural effusions that forced the doctors to put tubes back in that had already been taken out.

3. EXTUBATION! Ugh, that was a tough one the first time around. It was months before the doctors even tried to extubate her, and the first attempt was a bit of a disaster. Yesterday, they warned us she was at extremely high vent settings and her lungs were pretty sick. We're in it for the long haul.

4. Weaning. Right now Mira is on A LOT of sedation. The handful I can think of right now are: Versed, fentanyl, morphine, ketamine, Ativan, dex, valium. Yikes. The funny thing is, Mira is still feisty on all those meds-she gets mad when they suction her and she wiggles and tries to wake up at various times throughout the day. I think an adult on all of those would be knocked out, but Mira doesn't want to sleep away the days. The weaning process the first time around was long and difficult. Methadone is not a friendly drug, and so using that to wean her off morphine is rough going.

Even with my poor thought processing (in fact, I feel like this post makes no sense) and feeling somewhat discouraged-First and foremost, I am so grateful and relieved Mira is alive and doing relatively well! Of course I realize all those things are a blessing because it means she is alive and struggling to get better and get out of this hospital. She is alive! So every step we take in this recovery, I will remember its towards leaving this hospital and not towards another surgery. 

Draft

- Draft

Written Apr 1, 2012 9:03am by Amber Gannon Medina

I can't quite describe how awful my stress hangover feels. I thought it would be somewhat gone by now. But I woke up this morning with a body that feels 80 and a mind that feels like jello. My brain doesn't quite work right and even writing this feels slow and muddled. I know I am going to sound like an a rambling fool-bear with me.

Mira's latest surgical ordeal is just too long and complicated and confusing to tell the whole story. Sometimes caring bridge is the only "journal" I have of our journey through this ordeal, so I thought I would try to pull the highlights (Ugh, "highlights" makes it sound like I am giving you the play by play from an awesome football game. Although, maybe that's OK because I have to say, Mira played her little heart out!).

1.I remember eating a lot of strange things during Mira's surgery on Tuesday. Salted chocolate, sesame chips, blueberries, cinnamon raisin bagel chips and finally Toppers Pizza.

2.Mira did well throughout the whole surgery, and right before she was supposed to come through the hallway (where we can say hi) there was a long break in updates from Briget. This did not seem like a good thing, and it wasn't. 

3.See #2-We've been able to say "hi" in the hallway when Mira's been transported from the OR to her room. This seems like a strange phenomena and its been strange for me. Mira looks so tiny and vulnerable on her bed and there are at least half a dozen people surrounding her bed-someone ventilating her, another person checking her vitals-and someone always says, go ahead and give her a kiss. And you have to lean over and not touch anything (not easy for a short person) and kiss her in the 1X1 inch area that isn't covered by something.....

4.Mira had a rough night that first night. Her pressures were so high (20's-30's) and its never until later that the nurses or doctors tell you what they were worried about. I found out later that they were worried Mira would need to go on ECMO (a type of support) or would have a stroke. I am glad I didn't know that at the time....But I also always second guess the doctors when they say things are going "OK"-what are they not telling me.

5. I thought the day after her surgery would be a little touch and go, but mostly recovery. Ha!! We called in that morning and were told she was going to have an ultrasound, an ECHO.....and then a cath and finally surgery. Ugh. Two open hearts in two days....

6. By the second day I thought I was not going to make it. The amount of energy it takes to fight the rising panic and stress of 2 surgeries in 2 days is huge. 

7.

Surgery Is a Bitch

Surgery is a bitch.

Written Mar 27, 2012 8:17pm by Amber Gannon Medina

Dear Mirabelle,

I hope some day you will read this. Maybe one day after I am gone, you will be looking through my journals (thinking I am a weirdo I am sure), and you will happen upon this entry. An entry that was written on your 5 months and 10 day birthday. An entry that was written when I couldn't decide between feeling utter panic and fear and complete certainty things would happen just the way there are supposed to. Today is your surgery. It will not be easy. 

We got to the hospital at 6am. OK, it was really 6:30 and I really felt guilty about that. I thought about staying with you last night, but realized I wouldn't sleep at all, and I really needed sleep if I was going to be there for you the next day. So we left and came back after a quick morning routine of teeth brushing and granola bar eating. 

You were sleeping so peacefully and the nurse had to wake you up in order to scrub your chest and belly. You hated it. Of course you did. Who would want to be woken up that early for a cold bath and bright lights? Not Mira the fierce! But after your bath we got to hold you and you fell back asleep. I worked my hardest to stay in that moment, and for once I did it. Force once all I felt was the softness of your skin, the weight of your body and the rhythm of your breath. I loved you so much that moment that my heart broke and all my love emptied into you. I admit I gave you some advice, and then I felt ridiculous, because ME give YOU advice?? That's a joke, right? You're the one that should be telling me what to do! 

It wasn't as hard letting you go this time. That might sound strange, but its true. It wasn't that I loved you less, in fact I love you even more deeply than when you were first born. It had more to do with the mantras I had been trying to maintain in my head for the past week. My mantras have been on repeat-Mira, you need this surgery to LIVE! and "Hospital Life is no Life". Mira, you can't live this way indefinitely, so when I say it was easier to let you go this is what I mean. 

I want you to breathe fresh air, take walks with me outside, listen to REAL birds and crickets (not noise machine impersonations), eat, swim...Mira, you need to see there is more to life than a hospital bed and a 25 foot hallway. 

Your surgery went pretty well. I surprised me because you always like to throw a wrench into anything going smoothly. I am secretly terrified and proud of this part of your personality. Its so admirable and feisty, I just wish it didn't put you in so much danger at times. Unfortunately, I have mother's intuition now, and I knew your surgery couldn't go without a hitch.

However, we tried to create a nice atmosphere during a very stressful time. Your Nana and Dwight, Aunt Katie, Memaw and Grandma and Grandpa Gannon all came to hold vigil during your 8-9 hour surgery (I say 8-9 because I don't quite know when it started or ended. They took you at 8am and we didn't see you come out of the OR until 7:30pm). We had snacks and pizza and our own "private room", which is like being in first class on a plane-you definitely will never be able to go back to coach.

Everything went pretty well until you were done. And that's when your vitals went down. They got rid of what they thought was causing you distress and your vitals got better. Then they got worse. 

We were able to see you go down the hallway-I got to kiss your swollen cheek and tell you to hang in there. You didn't look like you. I felt like you were hovering somewhere close, but you weren't in that body of yours.....Though I felt sure you could hear me.

Maybe you know this as well-but something happens to your body and mind when you go through something like this. It isn't pleasant, but it helps you get through a really difficult time. You step away from what is happening, you put distance between you and the awful feelings that crop up. Your mind wanders and hours go by before you realize where you are or what you are doing. It is best not to operate any motor vehicles during this time. That was kind of a joke, I am thinking you won't find it funny....

So this day wasn't horrible for us, it isn't unbearable at the moment. It is fuzzy and laced with panic that hits me at the worst times. 

I struggle to write this letter at this very moment. And why is that? I am at home and I am waiting for a call from your nurse Jaci. You are at the hospital and you are struggling and you are sick. I hope you know that this is where I am, and if you need me, you will know where to find me. 

Mira, you are as unpredictable as the wind or the path of a hurricane, but you are also just as strong. I am loving you here, at home with only half a heart. My other half is with you. And if you were born with only half a heart, that is OK, because mine is always at your disposal. You are fierce, you are courageous and strong and an inspiration to so many people. You can do this. You will read this when you are older, and you will say-mom, I always knew I could, why did you worry? 

Mira, don't be afraid. Let god hold your hand. I know that you know what you need to do, and I trust in it. Please know that I love you more than anything, and I am with you in this fight. 

One Week Countdown

One week countdown

Written Mar 20, 2012 8:18am by Amber Gannon Medina

A week from today. Surgery. 

Five months ago. After giving birth to a baby, having her hooked up to a million lines in the NICU and then having to go through my daughter's first open heart surgery, I didn't think I would have a more difficult week. This one feels just as bad. Maybe worse.

I don't know if I've talked much about that first week of Mira's life. I think it will always feel like it wasn't real. I am not even sure if I was "there". I remember snapshots, bits and pieces and feelings that rose through a haze of me just trying to survive. 

I remember Mira crying miserably and the nurses telling us that she was very very hungry and we were not allowed to give her any food. So I watched Mira cry out with hunger and I felt helpless. 

I remember being able to hold her, and after awhile passing her to John. I remember this simple pass causing an uproar in the NICU unit because we should have let the nurse do that and now they had to give Mira another xray because last year a baby died when her lines were jostled and migrated into her heart. 

I remember spending a few hours with her the morning of her surgery. Looking at her perfect chest and knowing it would be sliced and cracked open in a few hours. I remember the worst part of that morning was letting the doctors take her away while she was screaming. I didn't know if I would see her again, and I knew she would be sick for a long time if I did. 

And last but not least I vividly remember her surgery. I remember being alone when I got the update that she was doing very well and that her surgeon had been able to keep her two ventricles intact. I remember feeling the flood of relief followed by tears. After the nurse left, I remember feeling a horrible sense of foreboding. 

An hour later, I remember hearing that Mira had to be "converted" to a one ventricle and that they were proceeding with a Norwood. I've never felt so terrified, disappointed, sad, or heartbroken in my life. I will never forget the feeling that I was being pressed between two panes of glass, that I needed to escape and that I had no idea how I was going to make it through that day, week or year. I still don't know how I did it.

Although, many of the old emotions and terror are resurfacing, this surgery is different because I know Mira. I've spent 5 months with her and fallen in love. I've seen how much she loves everything and how enthralled with life she is. It may sound selfish or naive, but I believe I've seen how much shedeserves to have a wonderful life. Obviously, I have so much more emotion and time and heart invested in the outcome of this surgery. That sounds so term paperish, but simply put, she is my sunshine and my life and more than anything I don't want her to die. I want a good life for Mira, one where she is not limited, one where she can actually breathe fresh air every day and feel the sunshine on her face. This time around, I know what I have to lose, and I feel it in my core. My heart will be following Mira's gurney into her operating room.

And yet, if I have learned anything through all of this, and learned it the hard way-its that (of course) I don't have any control over this. Sometimes that pisses me off and at other times it comforts me. But it always terrifies me. 

So now my days consist of smelling Mira's hair, holding her close, stroking her cheeks, making her smile with my routine of Mwah Mwah Mwah and la la la, watching her sleep, laughing at her antics (one of my new favorites is her eyebrow wiggling) and memorizing every part of her. I know firsthand how fragile life is, and that no one can predict what's going to happen. I choose to use all three of my wishes, I am praying to every god there is and I am bribing Mira with all the things she gets to do once she is better-stay awhile, my love. Stay a long long while. Go to school, get your first apartment and job, fall in love, travel the world, get a dog, eat good food and wine.....grow old. 

Surgery Date

Surgery Date

Written Mar 15, 2012 10:43am by Amber Gannon Medina

I wasn't sure whether to update you all on Mira's tentativeSurgery Date, but what can it hurt? The date might get moved or changed, but right now her surgery date is set for March 27th, 2012. Exactly 5 months and 6 days from the day of her first surgery.

Mira's case is once again a little tricky-she wouldn't have it any other way. Babies who are good candidates for the Glenn Surgery need to have low pulmonary pressures for the surgery to be a success. The findings from Mira's Cardiac Cath (which was a few weeks ago) showed she had higher pressures than the doctors like to see. Mira needs to have low pressures because simply put her new circulatory system will not be able to rely on the heart to push blood to her lungs, it will "provide venous flow" to the lungs. I will not pretend I know this enough to explain this well, but in essence Mira's circulatory system will push her blood to her lungs, where in normal systems the heart does this work. So you can see why if there is high pressure in her system, the flow would be disrupted. Does that make any sense?

A follow up Echo-cardiogram showed that her tricuspid valve regurgitation (in essence, the leakiness from one of her valves) had improved and her heart function was good. The doctors feel that this is a good enough indication that her pressures have lowered and she will be a good candidate.

We are happy that they are able to go ahead with the surgery! We are being cautioned that in rare cases (which she has been many times, little stinker) the Glenn does not work and may even have to be "taken down" during the actual surgery. In that case, we would have to look at other options like a heart transplant.

We are hoping everyone can once again put their energies and prayers towards a successful surgery-that she comes out safe and sound and that her heart accepts its new way of circulating! We also want to let people know that Mira doesn't like to do things the "normal" way and that she is in a small percentage of patients where doctors just aren't completely sure she will respond the typical way to the "rewiring" of her heart. 

Thank you again for all your love and prayers-Mira is where she is now because of them (and maybe a little bit because she is a spitfire too). We will keep you updated of any change in her surgery date or new findings. 

New Game

Written Mar 15, 2012 9:47am by Amber Gannon Medina

I keep waiting for the morning my head doesn't feel all fluffy and cottony. Or the evening I don't feel like going to bed at 8pm. Or the afternoon I am not running around trying to fit errands in when Mira is sleeping. I keep waiting for my brain to work right and my list of to-do's to twindle down before I update our caring bridge, and I don't think its going to happen. So I am hoping this coffee kicks in before I write something that makes absolutely no sense! 

I am starting to get the hint that life with a baby is pretty tiring (Duh!) and I am starting to think mommy brain is not a wives tale. And when I think about how exhausting the hospital is (that place sucks the life out of you, I swear!) and how tough having a baby in the hospital feels, I like to play a new game. I call this game-"Wait until she gets home!" OK, maybe I just made that name up now and upon second glance I am not sure how I feel about it. I may change it. I may just stop playing it.

Anyway, I am really curious about how life with a baby in the hospital compares to life with Mira at home. Sometimes when I express how tired I am or how overwhelmed, I wonder if I have it EASY....That sounds crazy......Maybe it is crazy. I don't know, I have nothing to compare my experience to! Mira is our first child, and all we know is how to be parents in a hospital.

Scenario 1: When your baby has been crying for two hours and nothing you have done has calmed her down, you are able to give her medicine that immediately knocks her out and makes her happy....OK, so in our reality its not so perfect. We HAVE to give it to her because her body can't handle crying for that long, and that medicine that makes her happy is an opiate that creates horrible withdrawal symptoms. I think that scenario goes to the "easier at home" category! 

Or think about all those restless nights where your baby won't sleep more than an hour at a time, and you are waking up with her each time and by the next morning when she is sleeping and you have to get up, you are absolutely exhausted....I don't have those nights. I leave Mira with her nurse, and I go home and I get a full nights sleep. OK, in reality I get a few hours of sleep, interspersed with a few hours of waking up with my heart racing and worries about Mira's next surgery flooding my head. That might be a tie between at home and hospital. This game sucks!

Surgery. It is what is pervading every aspect of my every day. It is there when I hold her, or when I see babies out and about, or when I see old pictures of how Mira used to look.This surgery means so very many things to me. It means Mira's life is being put in danger again with a very serious open heart surgery (although really her life is also in danger every day she doesn't have her surgery-what a catch 22). It means she is going to go through a lot of pain. It means we have to see her go through more pain. It means she has to have tubes inserted into her, copious amounts of drugs administered and then a struggle with the withdrawal from said copious amounts of drugs. 

Really, the real worry, the purest part of my worries, one that follows me like a knife in my gut is-there is always a chance Mira won't make it through this surgery. There is a chance that this surgery might not work for her. 

I know I am not supposed to let negative thoughts pervade, and I need to keep a positive attitude about all of this. However, I've realized these aren't negative, and I wouldn't even consider them realistic, although they are. But they are more than that. When I truly see our situation, its obvious Mira has given us a gift, and with that is a strange (what feels like a mixed bag) responsibility. 

Living in the moment is sometimes the only way I can live this strange new life of mine. However, living in the moment is like this bizarre new muscle that has only recently grown inside of me. Its still so little and unsure of its strength. I flex it every day, and sometimes I can't lift much with it. Some days I don't even work it out. The responsibility comes in to play when I have to balance living in the moment with my hopes and dreams for Mira's future. A future that isn't promised to her. The responsibility revolves around loving a little person who may or may not be here for her sweet 16, who may not go to school or have a boyfriend and who most certainly cannot have her own biological children. I cannot tell you what runs through my head when I say things like-maybe Mira will be an actor when she grows up (she is pretty dramatic, if you couldn't tell). Other parents might say things like that without even a thought, but I am not one of them.

Maybe some of you might think its negative or counterproductive to think that way, and I totally understand and I might even agree. Yet, when I think that way, a whole new world opens up to me. Because honestly, when we all start out in the world none of those things are promised to any of us, and somehow we choose to forget that part of life. And that is where Mira's gift comes into play, because if I had a choice, I would choose to forget how fleeting all of this is. Heck, I still try to forget it, and when I do, I am brought back to my new life. A new life that will never ever let me forget this new lesson. 

And maybe that's the answer to my new game. It doesn't matter whether I am in the hospital or at home-loving Mira is exhausting and amazing and it requires a part of me I didn't know I had. A part of me who has ripped out her heart handed it over to God and to a little person who is fierce and pure and strong. Every so often, when I stop feeling sad for Mira or when I stop feeling scared for her future, Mira lets me know she has everything she will ever need in just that very moment of life she lives. 

Countdown

Countdown

Written Mar 6, 2012 10:11am by Amber Gannon Medina

This morning while I was eating breakfast on the couch I realized that every muscle in my body was on alert, my breathing was shallow and not very consistent and my jaw was so tight my ears hurt. I was relaxed. This constant underlying tension seems like it is my new "relaxed", and I am not sure how I feel about that. On one hand how can you be a yogic goddess who breezes through life when your daughter has been in the hospital for almost five months? On the other hand, this state of perpetual tension and flight or flight mode is not doing anyone any good. Its not helping Mira, John or especially me. So I looked at Pow and I felt the warm coziness of our heating blanket and slowly sipped my coffee and I felt a little release, a little relief.

You wouldn't know from that paragraph that Mira is actually doing pretty well. Besides some problems with feedings and some pretty major teething, she is getting stronger and is a happy baby! 

There have been just a few issues in the past few weeks she has had to deal with. We knew from the very beginning that she would have issues with feedings. Despite me imagining she might be the one and only baby with horrible oral aversion to just magically take a bottle, she didn't even get that far. After weeks of trying to feed her gut through her NG tube (a tube through her nose down into her belly), the doctors decided she was throwing up too much (sometimes dozens of times a day) and not gaining enough weight. They put her back on her NJ feedings, and despite John and I being against this, we admit she is happier and A LOT less sick! And of course that makes us happy! 

Our new hurdle is something a little unexpected! Its the dreaded teething! I knew Mira was starting to teeth around 4 months, although the doctors were hesitant to agree because of how young she is.There is no denying that is what she is going through now....Despite her oral aversion she is eating her hand like its the tastiest treat in the world. In fact, she gnaws on that poor hand so fervently, she ends up gagging herself and starts a downward spiral of gagging, crying and chewing. 

The past week has been pretty intense with crying meltdowns that can last 2-3 hours. I imagine if she were my healthy heart baby, I would simply feel horrible that she was feeling so badly, and I would rock her to sleep as best I could. However, seeing as she is a HLHS kiddo who is still in her inter-stage (which means she is between her 1st and 2nd surgeries) her crying means a lot more. Put simply, it means we cannot allow her to cry for long periods of time, it means we have to stop her from getting too worked up, it means the whole time she is unhappy we are doing everything humanly possible to comfort her while we stare at her heart rate and renal numbers. From the very first time one of our nurses explained why she couldn't afford to get upset-that babies who are in interstage have had heart attacks because of a crying fit-it has been imprinted in my head like a commandment. Thou shall not let Mira get upset!! 

Needless to say this teething business has thrown us all for a loop....We have been doing our best, but there have been quite a few times we have had to give Mira an extra or earlier dose of her valium. One thing that has been both such a wonderful delight and at times scary and frustrating is the way Mira never does anything the "normal" way! From the very beginning she has surprised all of us, and wouldn't you know it the teeth she is cutting are her bottom "bull dog" teeth and not her two middle ones. So she will soon have two little teeth- one on her bottom left and one on her bottom right side.....

All of this-the teething, the feeding-feels like just a precursor to what is coming next. I am sure subconsicously that is why I can't stop clenching my jaw. Mira's next surgery. What I wouldn't give to be in a different situation, to have a different Congenital Defect that meant all we were doing right now is trying to get Mira healthy so that she could come home and put this all behind her. However, what we are trying to do now is get her healthy and at a good weight so that she is strong and ready for her second surgery. 

The Glenn is a surgery that most Hypoplastic kids need to have. I know I've mentioned it on here before, but if you wanted to know more or have it explained better, here is a link-

http://en.wikipedia.org/wiki/Fontan_procedure

Mira will have to go under the knife again. She will have to have her newly healed scar reopened for another open heart surgery. She will be put back on the heart and lung machine. She will come back on pain meds, with drainage tubes and a catheter. The Glenn surgery also produces horrible headaches for the babies because of the new circulation the procedure creates. The headaches normally don't go away for a few weeks to a few months.The thought of seeing her in pain again just makes me want to run.

There are a few things that keep me going. One-she HAS to have this surgery. The way her heart was rerouted with her first surgery-the Norwood- is unsustainable. As she grows, the shunt she has will eventually no longer provide the amount of blood flow she needs for her size. Another reassuring (if that last part is considered reassuring) aspect of the surgery is NORMALLY it is considerably less intense than the Norwood-for instance most kids come back with their chests closed and off the breathing tubes. I say normally in a very loose sense, because c'mon this is our Mira! She is not normal-and I mean this in a very good way-and so I will not surprised if she goes about things in her own way.  

So our time with Mira has been just wonderful-she is learning so much and really growing. She has been able to start reaching and holding things and her head strength is improving a lot! We are really starting to see her personality break through! She is quite an intense and serious baby who likes to study all of her toys and mobiles-I think we've got a real thinker here! Although, that doesn't mean she isn't smiley-she loves funny sounds we make with our mouths and when she is content and alone, we often come in to see her smiling and waving her arms at her toys.

However, even as I spend all this wonderful time with Mira the black cloud of the surgery is hanging over my head. The surgery that we need to get through to take her home (and God do we want to have that happen soon! We love our nurses so very much and will miss them terribly, but the actual hospital is grinding us down. We can't wait to be out of there!) is also the surgery that will put her life at risk again and require another major recuperation. I think its the worst catch 22 I have ever encountered. 

The doctors are waiting on Mira to gain a little bit of weight, but we have been told they think she will be ready for her surgery toward the end of this month and certainly before Easter. As far as recovery time, we have no idea! Some kids who have had Glenns go home within a week. Mira will have to recuperate and heal and then have a minor surgery to put in a G-tube (a feeding tube), and the doctors anticipate that being about 2 weeks after the Glenn. So there is the timeline-a very rocky and uncertain one! 

One thing I will say-I have seen how much stronger Mira is since her last surgery. She has come back from procedures that the doctors thought she would have a hard time with like it was no big deal! She had a cardiac cath and instead of needing the breathing tube for a week like her anesthesiologist predicted, she came back to the room extubated. I think this surgery is going to go well and be a lot easier on her!

We will keep everyone updated on any dates we get or any new information!