Pics!

...Some new photos from today. Little Bird was active, alert, and hamming it up for the camera. She's a little bit bigger, and a whole lot sassier! We hope you enjoy these as much as we do....

She Found Her Ear!

 

 

Holding Daddy's Hand

Tiny In Comparison

There She Grows!

Gearing Up For A Kick

Here It Comes...

And There It Is!

She's Such A Showoff!

share on: facebook

A Little Bit Of Hope, A Little Bit Of Little Bird....

Little Bird spent the past six days resting, and today she decided that it was time to play. When we got to the unit, she was snoozing. But she heard us talking to her nurse and that quickly, her eyes popped open. Both feet pointed straight up in the air, and she began to bat her hands around as if she was waving at us. I'd like to think she was. She was showing us her new I.V. line, in her left arm. She kept grasping for her ear, and I think she wanted to tell us that her scalp line was removed last night. She's such a show off.

She had her last dose of Indocin yesterday afternoon. This morning's follow up echocardiogram revealed that the PDA isn't completely closed, but it is smaller. Doc H. doesn't want to attempt a third round of the meds. If it was going to help completely, it would have by now. I agree. Because she's still on the ventilator, we're going to wait and see what her body does and how it responds to repairing it on it's own. She had a deset late last night, a few this morning, and one this afternoon. They did another vent pressure adjustment, and a follow up blood gas at five o' clock. The results weren't what we were expecting, they were lower than they should have been. Which means the feeds she was about to begin again at 6pm didn't happen. They won't restart them until they know that the PDA isn't disrupting her ability to breathe. So she'll have more labs tomorrow, and if those come back decent, she can manjia once again. 

Speaking of eating, today, she weighs two pounds, five ounces. No, really. She actually does! A weight gain of eight ounces. That's half a pound! Some of this is fluid build up, because it's all she's been getting for the past seven days. But some of it is also all her. They tell us to expect her to drop, but I feel a little bit more at ease with that expectation knowing that she now has those few extra ounces on her side. Even if it's just for one day, I'm going to revel in the positives. Every ounce of them.

And speaking of positives, there was noticeable improvement on her last ultrasound. The bleed in her brain is slightly smaller. A side effect of the Indocin. It's almost like she had to have the PDA in order to heal the hemorrhage. A weird medical trade off. At the very least, there are options available to treat her heart, even if we may not like them. Her brain has to heal on it's own. So far, it looks like it might be.

MFH also blessed Little Bird with holy water from the grotto at Our Lady of Apparitions in Lourdes, France. It's believed that there have been a total of eighteen sightings of The Virgin Mary here, the Mother of all mothers. A gift from her Pop to coincide with everyone's prayers. After seeing what we saw in her today, I have to believe that it's helping. Something is guiding her. Someone is protecting her. I know that now.

We're starting to understand what they mean by comparing the entire experience of the NICU to a roller coaster ride. Though we've been here before, it was nothing like this. We've literally had to forget everything we thought we knew about parenting a neonate. Every baby, every experience is different. And hope comes in so many forms. In the profiles on the wall in the waiting area. Other babies, some just as small, some even smaller. All now thriving. In the family, who walked out of that unit with their graduate this afternoon. Though we wished it was us, we still couldn't help but feel their happiness, too. In friends, who are anxiously anticipating the births of their children, some greeting their newborns for the first time during the last three weeks. I am so excited for them, and can't wait to meet their new arrivals, see their photos and hear their stories. In Little Bird. She surprises us every day, and gives us gifts of her opening her eyes, and squeezing our fingers. Every single minute with her is a tiny gift. It's hope. We couldn't wish for anything more.






share on: facebook

You Know Who You Are....

Dear Dave Demshock, Mike Quintinsky, Greg Polosky, and Keith Bolish,

I've spent the past eighteen days trying to find the words to express how grateful this family is to have met the four of you. Though, we wish it had been under better circumstances, we are big believers in that people come into our lives for a reason. When we called for paramedics that morning, it could have been anyone who arrived to assist us. But it wasn't anyone. As fate would have it, it was the four of you. And I couldn't have handpicked a better group of men. 

By the time you arrived, I already knew that we wouldn't make it to the hospital in time. What I didn't yet know was that the four people sent to help us would ultimately be responsible for saving our daughter's life. You walked into such a chaotic situation, and handled it with the utmost of professionalism. You were quick, you were calm, you were caring, you were knowledgeable. You were Godsends. You kept her safe. You helped her breath. You sustained her life when I no longer could. My daughter is alive because of you. It is because of you that I've been able to touch her, to hear her cry. It is because of you that I will hold her, and when that moment comes I will think of each of you, and thank you once again.  

We learned a lot that day. Life's little lessons. We learned that you could trust a stranger, sometimes more than you can trust yourself. We learned that nothing is ever for certain. Tomorrow is never a guarantee. But even if this is all the time we get with Little Bird, we have these minutes, these hours, these days, because of you. And it means everything to us.

As Little Bird grows, she will know the story of the day she was born. She will know of the four men who helped her into this world, who carried her safely as if she were one of their own. And as she grows, we invite you to continue to witness and be a part of her milestones. Our family has since considered you each to be a part of us. This door will always remain open to you. No matter what the hour, no matter the situation, should you ever need anything, we will gladly return the favor. We will never forget what you did for us, for her. And we can not thank you enough. 

Sincerely,

The Sanko Family


share on: facebook

More Medicine, More Tests, More Waiting....

We've reached a crossroads today. Little Bird's second echo showed that the Indocin has done nothing. They ran labs on her this morning, and her platelets are beginning to drop. Doc H. ordered a recount to double check before starting a second course of the medication. If they confirmed the first results were accurate, then we'd wait. Give her some time to rest on the vent. But the second tests told us that she's okay, able to withstand another round. A dose this afternoon, another tomorrow morning, and one more tomorrow afternoon. Another scan of her heart on Friday morning will determine whether or not she'll need surgery. 

Because the blood is flowing thru this ventricle from left to right, her lungs are being overloaded with carbon dioxide. Even when she was on the oscillating vent, meant to help shake the CO2 from her body, she was struggling to do that. On Sunday, she was still under CPAP oxygen, and her nurse took pity on her tiny face being squeezed from the mask. She decided to give her a try with nasal cannulas for a little while, but Little Bird just wasn't able to tolerate them yet, and ended up back on the mask in under an hour. The PDA is the reason why she keeps desetting. It's what's preventing her from making the hurdle of being off the ventilator permanently. And I also worry about her prolonged need for increased amounts of oxygen. I know it's essential to her right now. But it may ultimately cause her vision loss.


When Number Three was eleven months old, he came down with a really nasty ear infection. I noticed the swelling one morning when we sat down on the floor to play with some toys. The back of his ear expanded to the size of a golf ball. We ran him to the pediatrician, who admitted him to the hospital. He needed an operation to drain the fluid that was building up and threatening his hearing. I will never forget the look on his face when he woke up from the anesthesia. No child should ever have to go thru anything like that. And he was older than Little Bird is now. He was so much bigger. 


Last night, Number Five asked why her baby sister is in the hospital. She asks us everyday. She's only three years old, she doesn't understand what's going on. I told her that she's too small to come home, and has to grow. I told her that her heart is broken and the doctors are trying to help fix it. She thought about this intensely for a few minutes, and replied "But Daddy has some duck tape. He will fix it for her!". We couldn't not laugh. If only it were that simple. 


The boys and Number Four have been just so incredible, so helpful. Yesterday, we came home to a spotless house. The kitchen was clean, the laundry done, the living room vacuumed. I know this isn't how they planned to spend their summer vacation. This isn't their responsibility. We know they need us to be here. We need to be with them just as much. For how hard it is to walk out of the NICU at the end of the day, it's just as hard to leave them in the morning. They are being forced to have to figure out a way to deal with a situation that we, as adults, struggle to comprehend. They are being forced to grow up, to give up pieces of their childhood. Though they don't complain, I know it's not what they signed up for. But I'm proud of them. Everything they do, they do for their sister.

I can't stand the thought of even God himself performing any surgical procedure on her. No one is skilled enough to do this, in my eyes. She is too small. All the degrees and training in the world mean shit to me. I don't care how many times they've done it before. They've never had to do it to her before. God gave her this body. He has to find a way to fix it for her. 

 
share on: facebook

Exhausted....

Today was hard. Very informative, though sometimes too much information isn't necessarily a good thing. Very quiet. Little Bird wasn't doing much of anything today. She didn't open her eyes. She barely squeezed my finger. She didn't kick her legs to respond to our voices. She wasn't fighting the vent. After a few hours, I actually asked her nurse if she'd been sedated before we got there. She wasn't. She is exhausted.


Her last dose of Indocin came at 4pm. From what they can tell, so far, so good. She won't have another echocardiogram until tomorrow afternoon, but Doc H. said her murmur isn't as loud as it was when he listens to her chest. And that is quite possibly a positive sign. She's tolerating the medication, and her platelets have been holding steady. Her blood pressure is lingering on the lower side but that's to be expected. She hasn't had a feeding since Friday morning and her fluids are turned down to nearly being shut off all together. Since the reintroduction of the vent, her blood gases have been coming back really good. Though, she did have an event while we were there. At one point, she stopped breathing and didn't catch it herself. She usually startles when she hears the machine alert, but not this time. Her nurse had to stimulate her breathing by rubbing her back and patting her. This was definitely something I would have preferred not to happen or see. Now I understand why MFH refused to record any video today. 


Her doc introduced an I.V. line in her scalp last night. She ran out of places for them to insert one. This is particularly bothersome to us. In early April, MFH woke me up one morning at five o' clock, telling me he had "the dream". With each of our kids, he'd dreamed of the sex well before the first ultrasound, and he was always accurate. Even dreaming of the twins being boys long before we discovered that we were expecting two. This time, he dreamed of a baby boy, with jade green eyes, named Jude. But this dream was much more vivid. And in it, this baby boy had an I.V. line just behind his right ear. Guess where Little Bird's is located? When MFH finished scrubbing in and got to her bedside, he nearly collapsed when he saw it.


We met with Doc H. to discuss everything. Upon arrival to their unit, Little Bird's first two blood gases were incredibly bad, indicating that she was struggling very hard to maintain the tiny amount of oxygen she was able to take in. This severely increases her risk of brain damage. We spoke more in depth about her PDA. It could have gone from either the right side of her heart, to the left. Or, left to right, which is the type she has. And because of this, more risks, mainly that it may not close. If it doesn't he will try another course of the medicine. We can even go as far as a third if we have to, though he strongly suggests surgery if a second series of doses doesn't help her. She also has pulmonary edema, caused by the PDA. 


We are concerned about the brain bleed. It is now classified as grade two, meaning that there has been further bleeding that has not been contained within the ventricles, and instead has pushed out into the area which produces spinal fluid. There is no way to tell whether or not this will affect her. There is no way to predict if it will heal on it's own or continue to deteriorate. All we can do is pray that it will dissipate. Pray that the damage is minimal. Pray that she makes it thru this. Just pray.


Though we know she can sense light, it's yet unknown if she has damage to her eyes. We won't know until the first week of August, when she is scheduled to have an exam. She can't even wear clothing of any kind right now. I can't buy her booties. I can't dress my daughter. Her body temperature is too unstable, and if she gets overheated it can cause further issues with her heart, lungs, and blood pressure. She isn't able to sweat yet. Maybe it doesn't seem that important. But I couldn't help but hope for some sense of normalcy in such an unnatural situation. 


Her doctor will no longer talk about odds or percentages. Numbers mean nothing anymore. Watch and wait. She'll tell us when she's ready, and what she's ready for. This seems impossible to me when I see babies all around her. Babies that are being rocked to sleep by their parents, or being bottle fed by their nurses. Babies that are in warming beds instead of an incubator. We can't foresee when that will come for us. We have to learn to trust this hospital, these strangers, for however long that may take. And it's the hardest thing we've ever, ever had to do. 






share on: facebook

The Lesser of Two Evils.....

On Friday, Little Bird's nurse noticed some changes. She was lethargic, and pale, and her belly looked like it was rippling. She also bloated out by 3cm. This was a possible indicator of something called NEC. Necrotizing enterocolitis. Lack of blood flow to the intestines that shuts down a baby's digestive tract, causing infection and perforation of the bowel. They ran cultures, and began a course of antibiotics immediately while awaiting the results. They also paused her feedings.

On Saturday, MFH picked up on something that didn't even occur to me. A few days before all of this began, she bailed thru her milk supply and the hospital asked permission to supplement her with formula until I could get more to her. We agreed. But, all of our kids have had a reaction to milk based products, and I completely missed this before agreeing to it. She'd been given the formula for a little over twenty four hours at this point, enough to cause her body to reject it. That and apparently, me drinking chocolate milk every day to increase pumping was enough to pass thru to her, and her little belly was a lot pissed off about it. By Saturday afternoon, her color was back, and the swelling decreased by nearly a centimeter. Time to rest, to regain her composure. Her labs were due back the next day, so we'd have to wait and see if MFH's instincts were right. 

Yesterday, we got the results. No NEC. Tiny victories. But something was still off about her. She was desetting, a lot. She stopped breathing quite a few times, and wasn't able to catch herself. Even the caffeine wasn't helping. Her 02 sats were a lot lower than they should have been. Doc H. ordered more tests. This time, an echo on her heart. They detected a murmur eight days ago, just after they inserted her PICC line and it began to migrate. Though not uncommon for a preemie to have, this particular doctor is the worrywart of the team. And that is a very good thing. 

Her echocardiogram revealed something called PDA. Patent Ductus Arteriosus. A vessel in her heart that was supposed to close shortly after birth did not. If you've ever heard about the ability that newborns have where they can be submerged in several feet of water and not drown, this is why. Before birth, the placenta breaths for them. This vessel diverts the flow of blood away from their lungs and out to the rest of their body. Very shortly after birth, it closes on it's own, allowing for that flow to reach her lungs, delivering oxygen to them and enabling her to breath. In her case, it didn't work that way. The key to treating PDA is catching it in time. There is pharmacology to treat it, but the success rate of this decreases after the first seven days. Today is day sixteen. 

But we're trying Indocin regardless. There are risks, such as damage to her kidneys. But there are also good reasons to give it, like the possibility of protection against further bleeding in her brain as compared to if they gave her another medicine, which could aggravate that. The lesser of two evils. If medicine doesn't work, the only other available option is a thoracotemy. Surgery. Exactly how that's done on a baby weighing less than two pounds, I don't know, nor do I want to know. We need every single prayer in the world right now. Every. Single. One. 

This afternoon, before Little Bird received the first of three scheduled doses of the medication, she had a violent apnea episode which landed her back on the ventilator. Reintubated, and her feeds have since been stopped all together. Her IV fluids have been decreased as well. Extra retention will only compound the problem. For how much I loath that machine, I am grateful that the technology does exist. But she isn't fighting it this time, and that scares me, too. During a blood draw on Saturday evening, she cried so furiously that she passed out. Her body is just not strong enough right now. For the time being, she is sedated and resting as comfortably as she can be. Her nurse keeps assuring us that her letting the machine do the work is a good thing, she needs to rest. But I'd rather see her feisty. It's the only way she tells me that she's okay.

Tomorrow, we meet with her team and wait to see if the intervention does what we are hoping it will. If they'd just let us hold her, just one time, I know she will heal. I know she will. Until then, we need your prayers and positive energy. We pass each message to her everyday. You've gotten us this far. We just need a little bit more. 



share on: facebook

Breast Feeding For Dummies....No, Really.....

A little humor. We can use a laugh right now...

So, I've never been a big advocate for breastfeeding. Yes, you are about to become more familiar with my boobs than you are your own. After all, God created Similac for tired mothers with colicky kids who eat as much as mine. With #1, I didn't even consider it. With the twins, ahh hell no. What was I? A friggin' cat? #4 made me think about it, for about two minutes. And with the fifth, I must have been delirious with hormones because I actually bought a pump. But I never used it, and it sat in a box for the last three and a half years. Until along came Little Bird. Odds are, Michelle Duggar is full of shit. I'll bet she didn't start nursing until like, her thirty seventh kid or something.

I wasn't even admitted yet when the nurses started their diatribe of the benefits of human milk versus that of the easy way. And trust me, I was all for the easy way this time 'round. My body couldn't take much more at that point. Considering that my feet were still in stirrups and I'd just undergone a non medicated surgical procedure to remove the placenta? Yeah....NO. Definitely not something at the top of my 'to do' list. But then MFH came back from Little Bird's bedside and gave me her weight, in grams. It always sounds worse that way, for some reason. And the nurses weren't letting up on the subject. When I got into the NICU that evening, they cornered me. They sent the sweetest, most innocent looking RN over to guilt trip me into a corner. Fucking peer pressure.

I left that visit with my tail between my legs and a shit ton of disposable collection bottles in hand. It wouldn't be so bad, right? Women have been doing this shit for thousands of years. Immunity protection, no rejection, blah, blah, blah. Okay, fine. One time. I'll try it once. I'll try anything, once. If it doesn't work out, at least I can say I tried. We'll always have manufactured nutrition in a can to fall back on. Surely, that was the way to go. Surely, this wasn't going to end well. 


But, son of a bitch. I got home, dropped my bags at the door, and became half cyborg for an hour. Just one hour. If I came up dry, so be it. I think the nurses put the juju on the boobs. I had no clue what the hell I was doing, I still don't. But I managed to get more than I expected. More than I could go back and report that it wasn't gonna happen. I couldn't deny it, I was off to a really good start. And it wasn't as bad as I thought it would be. In fact, it was kind of easy. Nothin' to it, really. And hey, Little Bird would reap some really sweet rewards from it. So I kept at it. Until the next morning, when I got bupkis. Fuck my life. 

Nursing in and of itself can be tricky. Exclusively pumping is a fucking chore. Apparently, you have to trick your chesticles into believing that a piece of machinery that runs on twelve volts of electricity is a baby. And just how does one accomplish this? They tell me to look at her picture. Breathing techniques. Listen to music. Relax. I know, right? Relax? Yeah, lol. No pressure. And nothing says pressure like a team of medical personnel prepping your preemie for her first feedings, and constantly asking for an update on your end. Got milk? How's it going? Anything yet? How many cc's? Shut the fuck up! The boobies are shy and you're scaring them!

The really ironic thing, and this is the best part, is that even though Little Bird isn't here, I still have to wake every two to three hours throughout the night and coddle Medela. Medela is my adopted child, my black market baby. My infant by proxy. If they really want to bottom out the teen pregnancy rate in this country, they'd send young girls home with a breast pump instead of a robotic doll.


The lactation consultant said it's not an exact science. And I get that. Trial and error. Drink lots of fluids. Okay. Try eating chocolate. Sure. Avoid stress. L.O.L. As if. So there I am, at 3am, sitting at the edge of the bed, pumping my nipples off, and crying. Because nothing was coming out. And all of this as I'm concentrating on #6's pics, listening to Nickleback and bawling like a weenie. When MFH rolled over and looked at me, I swear I saw a little cloud bubble with the image of a bottle of Valium pop up above his head. Maybe I just wasn't cut out for this shit. I called the Guilt nurse the next morning to hand in my resignation. But it backfired on me. "She's doing really well today! We started her trophic feedings and already increased her amount! She's tolerating them really well! Babies thrive on breast milk! When you come back down, bring more, because she's almost finished her supply!" Damn it! I hung up the phone and did the walk of shame back to the pump. 


I'm not sure what I've done right between then and now. Maybe it's possible to indeed will the body into doing something that it isn't capable of doing. Because I've since been semi successful in managing to yield roughly a half ounce at a shot. Which was pretty good until a couple of days ago. Little Bird's feedings increased to fourteen cc's every three hours. FML! I am. So. Screwed. 


And now comes the part where I go on my own little rant about the benefits. I'm not one for telling anyone how they should parent their kids. So I'm still not going to jump on that "breast feeding is superior" bandwagon. But I am going to tell you that I'm seeing....something. With my own eyes. It's common knowledge that all babies loose roughly ten percent of their birth weight within the first week of life. Micro preemies tend to loose more, up to fifteen or even twenty percent. The day after she arrived, Little Bird was already down an ounce and a half. Keep in mind the fact that they've been pumping all kinds of fluids into her, combined with the reality that she doesn't have the extra ounces to loose, and this was cause for concern. Today, she is fifteen days old, and she has since gained that ounce back. An actual, true ounce. Not from the meds, not from the IV's. It's all her. Her color has improved tremendously. Her head and lower half of her body were badly bruised from the trauma of her delivery. Her team was worried about her left foot, particularly. But the swelling is now gone. Healed. They credit the milk. And, she was extubated from her ventilator, at ten days old. We're talking about a baby born at twenty six weeks, four days. A baby who had no steroid intervention to help mature her lungs prior to her birth. Even I can't deny that it is benefiting her. 

Aside from all of the positives she receives, I get some of my own. Like, that great excuse to eat an extra five hundred calories a day. But most importantly, breast milk is like kryptonite to teenaged boys. Got a fourteen year old that eats you out of house and home? Just stick a bottle of this shit front and center in your refrigerator, and I guarantee you'll see a difference in your weekly grocery bill. Got a fifteen year old who won't log off the internet? Toss a flange in his direction, he'll haul ass faster than he can gag.


So, if you're expecting a baby, it's just something to consider. I'm not even going to lie to you, it's hard. A lot harder than it seems. If Little Bird was full term, I probably wouldn't have attempted it myself. Just know what you're getting into in that regard. But it is worth it. Every drop. I'm starting to see why they call it liquid gold. I'm going to keep at it. As long as The Ladies cooperate and give me something, I'll keep trying. If not, no biggie. Similac does exist. And at least I won't have to walk around attached to the iron breast. Oh, one more thing. If you're out and about, and we happen to run into each other, just do me a favor? No hugs, mmk? A little high five will suffice for now.  



share on: facebook

The Number 13....

Since she's been born, Little Bird has been surrounded by this number. One pound, thirteen ounces. Thirteen inches long. Thirteen weeks, three days early for her forty week arrival. At first, I thought maybe 13 would bring her luck. Maybe the numerical superstition behind it was wrong. But I'm starting to doubt that. Today was day thirteen. And today, she's not feeling very well.

Yesterday, leaps and bounds. Day twelve. They took her PICC line out. I was so excited. This meant progress. Inserting it was a three hour procedure, and they surely would not remove it unless they truly felt she no longer needed it. And she tolerated the change very smoothly. Her oxygen level stayed the same, and she had no monitor violations throughout the entire day. Even her feeds were good. She was bumped up to 16 cc's every three hours. A half ounce, and she's digesting all of it. That's incredible. We also got a bit of a bonus, her jaundice was gone. No more phototherapy. Hooray for little victories. 

And then this morning, a phone call from the doctor on the floor. Be on standby. She began to frequently deset, and had already had several episodes of apnea. Even the caffeine that they give her daily wasn't helping. They increased her oxygen quite a bit, and tried adjusting her CPAP mask thinking maybe a poor fit might be the cause. As of now, they have it under control, though she's still having trouble. And if that weren't enough for her to have to deal with, she also has an infection. Somewhere. But they haven't yet located it. So they began another course of antibiotics. It could literally be from anything. I touched her, that may have caused it. Before they removed her breathing tube, she managed to cut her arm on the plastic and they had to bandage it. It could be there. It could have been from the extubation, or the PICC line. When they remove the surgical tape used to secure even so much as an IV or eye mask, it pulls at her delicate skin. It could be from that. Anything. She is so tiny. Her body is not equipped to handle this. And it terrifies me a hell of a lot more than her breathing issues.

Beyond it being a major setback for her, it also is for us. We were hoping to be able to hold her tomorrow. How can she heal if she can't be held? How can she grow if she can't be touched? She needs to feel us. Not just see us, not just hear us. She needs to know she is loved. She needs to know we are there. How is she going to know that now? Tomorrow, she will be two weeks old. Day fourteen. It has to bring her more luck than today did. It just has to.

 
share on: facebook

Day Ten....

Today is day ten. And I can finally exhale. Little Bird's odds of survival just jumped from twenty five to eighty percent. It tears me apart, this being one of her very first milestones. But I am also so elated. Nine days ago, I couldn't see this far ahead. Nine days ago, day ten didn't even exist. For the past week and a half, we lived not day to day, not hour to hour. But minute to minute. Breath to breath. Heartbeat to heartbeat. Ten days of observation. Ten days of rest. Ten days to prepare. And now? It's on. 

She's ready to fight. And she's not waiting. Yesterday, we were discussing the possibility of extubating her. Today, they actually did it. The ventilator is gone. She's now breathing with the aid of CPAP, and her oxygen level is that of room air. She is also desetting less frequently, and her blood gases continue to show improvement. Her PICC line was migrating into her heart. The staff still does not fully understand why, but they suspect it's due to a murmur she has. It's since been located, readjusted, and better secured. She underwent another ultrasound of her brain this morning. For the time being, they can only monitor the bleed. And even though there has been no remarkable deterioration, we continue to be haunted by the threat. The word "stable" is starting to become one of my favorites. Her feedings have increased yet again. She eats like a Sanko kid. She's now up to nine cc's, with her nurses adding one every twelve hours as long as she continues to digest. She's also now attempting to try and nurse a pacifier. And her doctor sprung some news on us that literally almost made me faint. So long as she allows for it, we may be able to kangaroo her within the next week. Skin to skin contact. I yearn for that moment so much that I can taste it. Though, for the time being, I am grateful to touch her, and today I was able to do just that.

Her neck begins at the tip of my middle finger, with the bottom of her diaper ending a hair's breath above my wrist. Her head is the size of a light bulb. And she is so soft. The softest thing I've ever touched. My hands don't know how to let her go. Her fingers are so strong. She squeezed one of mine and it took my breath away. Her palms are smooth, and I don't even know if she has fingerprints yet. Her hair is white, and she is covered in downy. Her eyes are dark and sad like a teddy bear. She opens them slowly, and her gaze lingers for a moment. I know she hears me. I know she knows I'm there. Today, I heard her cry for only the second time since she was born. But she can cry. She has a voice. And it's just the sweetest, most gentle sound. Like a little bird. She's my Little Bird.


She is just so.....amazing. They call her Feisty Little Lady. None of the staff expected any of this from her, not so soon. We certainly didn't. We know this is just the tip of the proverbial iceberg. Cautious optimism. Never trust a preemie. Even still, I can't help feeling the hope she's giving me. I want to celebrate her accomplishments, her abilities. No matter what they are. Her progress keeps me sane. Her life force is my faith that tomorrow does exist. I am blessed, even if it's only for ten days. It's not for nothing. Something good must come of all of this. One little bird. So tiny. So fragile. So strong. She is a living, breathing miracle. And I just love her. 
share on: facebook

Little Bird....

These are a few of the first images of Little Bird. If you look beyond the equipment, the machines, the monitors, you will see what we see. A bright life shining. A Little Bird. She is tiny. But she is beautiful, so beautiful...

Time To Rest...

She Knows We're There...

Time To Grow...

So Tiny...

Yet, So Strong...

Beautiful...

Shining...

....Little Bird.

 
share on: facebook

Heaven Help Us....

**This post is days in the making, bits and pieces, here and there. It's all over the place, and my apologies in advance. But I wanted to update for the many well wishers. Every single prayer is delivered to her personally, and we thank you all for that. Further updates might be just as sporadic, but we will give them as soon as we can.**


My heart hurts. I want to scream. I want to hit someone. I want to pull my hair out. I want to cry. But, I can't. I want to shop for little pink hats. I want to feel her kick me. I want the leg cramps, the heartburn, the mood swings, the God damned bed rest. But, I can't.

I want to be able to tell #3 that his sister is going to be okay. I want to tell #4 that it's not wrong to laugh and be happy about something, anything. I want to be able to reassure this family. I want to upload the photos without something bad happening. I want to not have to share my baby with a thousand strangers who's names I will never remember. I want to not die a little inside every time the mother fucking phone rings. But, I can't.

I want to kiss her. I want to be able to touch her without it hurting her. I want to take that fucking tube out of her throat. I want her bruises to heal. I want her eyes to see me. I want to hear her cry. I want to hold my daughter. I just want to hold her. Just one time. But. I. Can't. 

A perfect storm. Bleeding from the subchorionic hemmorhage made a slow amniotic leak that apparently began two weeks earlier undetectable. Nerve damage from a pre existing condition masked the pain of true labor. At 3am, I felt uncomfortable. By 10:30am, I began to question the symptoms. By 11am, it was time to go to the hospital. By 11:30am, it was too late. As the paramedics were walking thru the door, I could feel her coming out. We barely made it off the hill when she arrived in the back of the rig. There was no sound. Absolute silence. Seven people in that ambulance, yet no one was saying a word. She was inches away from me but I refused to look until she finally did cry. And there she was. Fourteen weeks early.


We went directly to the closest helipad. She flew out first and arrived at the NICU within minutes. When I got there, the staff was working hard to stabilize her. One pound, thirteen ounces, thirteen inches. She was cold, and in shock. A ventilator, to help her breath. IV's, to increase her blood pressure. A thousand hands, all holding her, but none of them were mine. It would be hours before I could even see her. MFH got there, and the look on his face explained everything. I could always judge a situation by that, he really sucks at hiding emotion. His efforts at my bedside were useless. I sent him to be with Baby Girl. She needed to know we were there, she wasn't alone. He came back a while later with an update. She was finally stable. And so it began. 


Later that night, I finally got to see her. And to touch her, albeit brief. Nothing could have prepared me for what lay ahead of those doors. There are no words to describe her fragile size. So many machines, all working for her, and her, fighting against every one of them. A ventilator and oxygen, to help her breath. Phototherapy lights, to diminish the build of billirubin in her blood. Various IV's, to sustain her electrolytes and sugars. A PICC line, to administer medications that would ultimately assist her in accomplishing the smallest of tasks we all take for granted, like blood pressure regulation and the ability to urinate. A gavage tube, because it will be weeks before she learns the reflex of sucking from a bottle. So many leads crisscrossing her frame and closely watching every heartbeat, every respiration. My instinct wanted me to reach into her bed and pick her up. Take her away from all that hell. But I couldn't. 


The thing about the NICU is that time is of the essence. The staff never pulls punches. Whether the news is good or bad, they will never waste a second sugar coating anything, no matter how much you may want them to. Her doctor approached her bedside, and gave it to me straight up. Twenty five percent. Those are her odds for the first ten days. Plugging the dam. That's what she described this time period as. Every effort geared toward sustaining stabilization and keeping her from getting any worse. After the first ten days, then we'll concentrate on progress. But for now, she holds the reigns. We follow her lead. Hope for the best but prepare for the worst.

And so we did. The next evening, MFH brought her siblings in to meet her. How do you explain all of this to a three year old? An eleven year old? A fourteen year old? Even a fifteen year old? There is no way. You just do. We sat them down and did our best to describe the war zone they were about to walk in to. They went into the unit, one at a time, but came back as a collective whole. And they broke my heart when they returned to my room and said "She's part of us. She's gonna fight thru this". Hearing those words from anyone else means nothing to me. Hearing it from them gives me comfort, and hope. 


Today is day eight. And she remains stable. She has a grade one choroid plexus bleed on her brain that can only be monitored for now. The NICU director said if we have to have a bleed, it's the best we can ask for. She has jaundice, which is to be expected. Her liver is only that of a twenty six week fetus. Her blood pressure was critically low, but dopamine helped, and so far, she's able to regulate it on her own. She couldn't pee, but a transfusion of plasma kick started her body into doing that, too. She was severely bruised from the delivery. A few days time brought the swelling down, and the marks are now all but diminished. She has apnea, and caffeine is helping her lungs remember to breathe. Antibiotics are keeping any infections at bay. Tropic feedings of breast milk are preparing her stomach for when she finally can tolerate food. They switched her vent, a downgrade from the high frequency oscillator that she did nothing but fight and breath over, causing her blood gases to keep coming back fluctuated. You'd be pissed off too if you were trying to sleep thru all of that shaking. But she seems to like the new one, because her oxygen needs have decreased to twenty two percent. Her umbilical line was removed a few days ago, because her PICC line was a success. No rejections, no reactions. And she no longer requires glucose. Baby steps. I'll take every bit of good news I can get. 


And she is so damn feisty. All of her nurses agree. In fact, they are actually sedating her, to give her body the opportunity to grow. She knows when we're there, I know she does. She works so hard to open her eyes when she hears us. Just a peek here and there, a split second. But she can hear us. Her eyes can also sense light. We know this, because the overheads piss her off. She can touch with her tiny hands. She can kick her legs that are no longer than my index finger. And she can lift her arms, splints and all. On day five, I got an unexpected and pleasant surprise. We arrived in time for her care, and I got to change her diaper for the first time. It was nerve wracking, and so bittersweet. These are the only moments that we get to touch her. She can't tolerate stimulation. It took everything in me to pull my hands back out of that isolette.  


We do have photos, and video. But I'm stingy right now. And very superstitious. We won't be out of the woods for quite some time, but if we make it to day ten without any major changes or events, I promise I will post all of them. Twice. What she needs now is time. Time to heal. Time to grow. And prayers. Lots of 'em. I'm not a religious person, but I have to believe that for whatever reason, she was meant to be here now. I have to believe that there are no coincidences. I have to believe that she will get better, that she will thrive. That she will come home. Positive thoughts only. I have to believe.





share on: facebook

File This Under "Things You Should Never, Ever Do To Your Husband"....

A few nights ago, in the midst of complete and agonizing boredom, immaturity reared it's hysterically funny, little head around here at roughly 3am. After being on forced medical purgatory for what already seems like an eternity and the older four kids being severely off schedule due to summer vacation, the five of us sat up really late watching old reruns of Cops, easily amused by toothless crackheads getting tasered in the balls by the wonderful men and women of law enforcement. MFH didn't find our company, or our completely tasteless and off colored jokes, laughable. His forty year old ass declined our invitation at a night of reckless debauchery, and retired to bed like a senior citizen a few hours earlier.

Before I go any further, I'd like to take this moment to acknowledge that yes, I realize I am a bad influence on my kids. And yes, I admit, our behavior left something to be desired, like quite possibly an evolutionary link or two. Still, I can't help but giggle as I type this all out. Just reliving it in my head makes me crack the fuck up. You really, really had to be here...

Me: "#3, I'll give you five bucks if you run upstairs, bust thru my bedroom door, and scare the shit out of Dad."

#3: "Show me the money first..."

I slipped a crisp Abe Lincoln out of my wallet and snapped it in front of him, asking him how fast he thought he could run. 

#1: "Oh man, he is gonna beat you like a red headed step child if he catches you!"


#3: "He won't catch me. I'm too fast for him. He's old now."


Me: "There's five dollars in it for youuuuuuu......"


#3: "Give me the money."


#1: "No, you have to do it first. Then it's all yours."


#3 got up and handed me his eyeglasses. We all followed him into the foyer. As we watched him ascend the staircase like a blind ninja, the rest of us anxiously stood at the bottom, clutching our crotches in a desperate attempt to not piss our pants. By the time he disappeared around the first corner, we were biting our hands, trying to stifle the excitable laughter that sounded more like grunting from the short bus. This was gonna be sooooo goood.

Seconds later, we heard the bedroom door being rushed. #3 exploded into the master bedroom with the fury of ten thousand starving zombies, screaming like a lunatic on the top of his lungs. In all fairness, I assumed the odds were high that MFH was actually still awake and watching something more dignified than white trash, nineties reality television. But, we all know what happens when one assumes....

He wasn't still awake, and he wasn't watching t.v. And in hindsight, it made the whole scenario that much more entertaining. MFH was asleep. Fast asleep. Peacefully dreaming of Metamucil and winter green, minty fresh, anti inflammatory arthritis ointment. In the instant that #3 came bursting thru that door screaming like a rabid gorilla, I can only imagine that the next and only thought that probably came to my husband's mind was Depends.


The words that came to his lips were priceless. Sounding like Joe Pesci trying to shake off anesthesia, he automatically spouted of a slew of profanity that would have made Andrew Dice Clay blush with embarrassment. In true, pissed off, MFH style, every other word out of his mouth rhymed with duck. Normally, one of us would have made a conscious tally for future reference, but we kind of didn't have the time. #3 came barreling down the steps so furiously that I'm almost positive his feet didn't even touch more than two or three of them. The kid literally hail Mary'd most of them with the facial expression of one of those overused and overproduced Scream movie masks. The rest of us struggled to rise from rolling around on the floor, and make our way back to the living room before MFH could catch us on our hands and knees, completely consumed with maniacal cackles. If ever there was a time to be grateful for having to wear a super duper overnight maxi pad with wings, that was it.


#3 quickly hid behind the love seat. Smart boy. #1 and #2 assumed the position, jumping in front of their computers, trying to make it look like they'd been there all along. #4 and I hid under blankets on the sofa, struggling to regain some sense of composure while we epically failed at faking slumber. And MFH came storming downstairs in a Terminatoresque like rage, looking to avenge his mini stroke. By the time he finished ripping us each an individually new asshole, we were so grounded. #3 was five beans richer. And we all gained a treasured and cherished memory of the Summer of 2011. Well, not all of us. The next morning, MFH began serving up some serious silent treatment, but we had a plan. When he finally got over his disappointment in us, we collectively banned together and blamed it on #2, our resident fall guy. Still, there is a very important lesson to be learned in all of this. When contemplating scaring the living shit out of your spouse in the middle of the night and a moment of sheer and utter monotony, make sure he isn't asleep before you do it. And, make sure you're totally prepared to make your own coffee first thing in the morning for at least the next five days.

share on: facebook