Today was very emotional at different points for different reasons.
When I first got up to Mira's room this morning, I saw a stack of emails on the window sill that hadn't been there the day before. When I picked them up and looked at them, I realized they were e-cards for Mira, Joe, and me. UPMC has a program where you can send people e-cards, and a volunteer in the hospital will bring them to Mira's room each morning. As I read through them, I cried because it was so touching to feel how much people care! The cards and thoughts and words were so beautiful and caring! Just seeing and feeling how much people care about Mira and knowing how many people are pulling for her from all over the place is so beautiful and means so much to me! All I want is the best for her, and knowing that so many other people feel the exact same way is so comforting as a parent... it just left me speechless, and in awe, and so thankful to everyone that sent us a card! Thank you all so much! They were so beautiful!
Then a couple hours later, a different type of emotional occurrence happened... One that I wish on no parent! I was hanging out with Mira, who is usually just lounging and sleeping, and you can tell that she's pretty out of it, off in la la land. Well as I was rubbing her skin, I noticed that she was really alert. Her eye was actually open, and she was looking around, and she wasn't in a deep slumber, which is the only way I had seen her up until this point. As she became more and more alert, she started getting really fussy. As her Mother, I just want to pick her up and soothe her, but I can't right now... no one can. Within a few minutes, she started screaming, and it was clear she was in a lot of pain. I'm assuming that the pain either made her really alert, or that because she was so awake, she was able to acknowledge the full extent of her wounds right now. Either way, my baby was in pain, and there was nothing I could do! She was screaming for a half an hour! The nurse gave her morphine, and all I could do was rub her nose and talk her through it while we waited for the pain meds to kick in. I would've given anything in that moment to take her pain myself. Anything! I don't know if it was her head hurting her, or her back, but I wish I could've absorbed it! All I could do was put the one side of her incubator down and get as close to her as possible so I could rub her nose and caress her skin, and speak softly to her to let her know I'm here. Mommy's here, and I'm so sorry you're in pain, but everything will be okay! I promise it will go away soon, but I'm not going anywhere! She clenched onto my finger, it was the first time I got to hold her hand, and she would squeeze my finger for dear life and tense up her body every time the pain escalated. It's a terrible thing, to know your child is hurting, to watch their pain and not be able to take it away, to feel so helpless even though there's nothing you wouldn't do if you could! I wish it on no one! It's sad when she's on the morphine, because she is so out of it and you wish she could be alert, but now that I've seen the alternative... I would much rather her be on a drug-induced cloud 9 than to see her distressed and hurting and desperate for relief. She's only needed morphine a couple of times in the past few days, so I'm glad she's not on it all the time, but if that's what it would take, then so be it. I never want my children to hurt like that again.
After Mira felt better, Joe's Mom (Brenda) and Step-Dad (Jim) came to visit. Mira was in a deep sleep when they got here, and they got to visit with her for a while. When they were done visiting with her, Brenda, Jim, Joe, and me all hung out together. They brought us some food and stuff, and it was so nice visiting with them! I was sad when they had to go, but I had one more emotional thing to deal with tonight. Joe had to leave tonight because he goes back to work for two days starting tomorrow. Joe and I had gone up to say good night to Mira and so he could tell her goodbye before he left. I got hit with a flood of emotion when I was stroking her cheek. I was so glad to see her resting peacefully, and no longer in pain, but I was so sad to look at Joe and know that he was getting ready to head out... he kept asking me why I was crying, and to tell him what was upsetting me so he could make me feel better, but I couldn't talk... I just kept crying. Seeing her better was so emotionally relieving, and at the same time, seeing Joe saying goodbye to her was so emotionally taxing. It was a very confusing cry that I had no control over. I'm so glad my sister is here with me, but I didn't want Joe to go! I already miss him so much, and it's barely been an hour since he left. He didn't want to leave, either, but he also knows that he has to keep our household supported, so he has to work when he can. Right now, Mira does not have another surgery scheduled until Tuesday, so he's going to work until then. I hugged and kissed him dozens of times, and he made me promise to take it easy and not over-do myself while I'm healing. He's my rock, and my protector, and my best friend, and I don't want to be many places without him by my side right now. It felt like letting him leave was going to kill me! But, nonetheless, I have a job to do here for our little miracle, and nothing is going to hinder me from doing so.
A very emotional day, indeed, but she is okay, and that's all that matters! I'm going to rest now and keep my promise to Joe that I'll take care of myself, as well as our daughter. Good night everyone! I'm sure I'll put up more pictures tomorrow! Love to you all!
Saturday, April 20, 2013
Lounging With An Appetite!
At this point, we all swear Mira is just on vacation. The way she just lays there, and she is so very content, reminds us of how someone would lounge on their belly on a beach and just sunbathe. That's pretty much what Mira is doing!
She's eating great now, too! Thank goodness my milk is finally coming in! I was getting do discouraged, but I didn't give up, and now I'm almost making enough milk to make formula completely unnecessary! Mira is now allowed to eat as much as she wants every three hours. Before, she was on a strict bottle routine of only 10 cc's over feeding, but now she's allowed to eat as many cc's as she wants! This last feeding, she ate about 30 cc's! She's got such a good appetite, so that's a really great sign!
The nurses are trying to get her to lay her head on her left side because if she doesn't switch sides that she's laying on, she could get a flat head, plus moving from side to side helps relieve the pressure. However, little Mira prefers to lay on the right side of her face! Earlier, the nurse changed the dressing on her head, and while doing that, she switched Mira's head over to make her lay on the left side. Well... when the nurse came back, Mira was laying on the right side of her face again! That little stinker picked her own head up, turned it back to the side she likes to lay on, and laid back down! I guess we're just gonna have to deal with her having a flat head because she won't let us have it any other way!
It is amazing how nothing seems to be bothering her! It just goes to show you how resilient little ones are! I got quite the look at her head drain and incision while the nurse was changing her dressing, and if someone did that to my head, I'd probably be inconsolable, but for Mira, as long as she gets to lay the way she likes, and she gets fed every 3 hours, she could care less! She really is incredible! She's taking all of this in stride, and I can't say enough how much of an inspiration she is!
She's eating great now, too! Thank goodness my milk is finally coming in! I was getting do discouraged, but I didn't give up, and now I'm almost making enough milk to make formula completely unnecessary! Mira is now allowed to eat as much as she wants every three hours. Before, she was on a strict bottle routine of only 10 cc's over feeding, but now she's allowed to eat as many cc's as she wants! This last feeding, she ate about 30 cc's! She's got such a good appetite, so that's a really great sign!
The nurses are trying to get her to lay her head on her left side because if she doesn't switch sides that she's laying on, she could get a flat head, plus moving from side to side helps relieve the pressure. However, little Mira prefers to lay on the right side of her face! Earlier, the nurse changed the dressing on her head, and while doing that, she switched Mira's head over to make her lay on the left side. Well... when the nurse came back, Mira was laying on the right side of her face again! That little stinker picked her own head up, turned it back to the side she likes to lay on, and laid back down! I guess we're just gonna have to deal with her having a flat head because she won't let us have it any other way!
It is amazing how nothing seems to be bothering her! It just goes to show you how resilient little ones are! I got quite the look at her head drain and incision while the nurse was changing her dressing, and if someone did that to my head, I'd probably be inconsolable, but for Mira, as long as she gets to lay the way she likes, and she gets fed every 3 hours, she could care less! She really is incredible! She's taking all of this in stride, and I can't say enough how much of an inspiration she is!
Just look at the difference!
This is the difference in her face in just a day and a half. The swelling in her face has gone down so much now that her ventricles are being drained. Her little features are so gorgeous, and now she can relax without all the pressure in her head! Take that, hydrocephalus!
The picture where she is intubated is after her surgery on Thursday night, and the other picture where her swelling has gone down so so so much is from five seconds ago!
The picture where she is intubated is after her surgery on Thursday night, and the other picture where her swelling has gone down so so so much is from five seconds ago!
Friday, April 19, 2013
Mira!!!
After what seemed like a lifetime, I was finally reunited with my beautiful little miracle! She's so beautiful, I could hardly stand it! Her skin is so soft, and I finally got to just touch her! I got to rub her little shoulder and caress her legs! Her complexion is so perfect, I accused her of using fake tanner! It's bittersweet when she whimpers... on the one hand, it's heartbreaking to hear her whimper because I don't want her to be upset; but on the other hand, hearing her little noises is music to my ears! Plus, when she whines, I get to rub her cheek and soothe her back to comfort!
It feels so good to actually feel like her Mommy! Don't get me wrong, I know she's mine, and have known that... but going from being pregnant, to having your baby taken from you immediately, to only seeing pictures and videos of her for days... it kind of makes you feel like you're not doing what a Mommy should be doing, like a Mommy would be right there, like a Mommy would be more involved! It feels like she's not real, she's just this beautiful little thing off in the distance somewhere, but she's not really here. Well not now! Now I got to be here! I got to claim her, and be involved, and show her that Mommy is here, and I'm not going anywhere, because I am Mommy, and Mommies are here to stay!
Mommies are also here to feed babies, which is why I'm ecstatic to report that I was able to pump 4 cc's of colostrum tonight! She is eating roughly 10 cc's per feeding, so she'll still need formula until my supply builds up to normal, but my breasts are finally on the way to being worthy again! Mira was the key all along! After I got to her and enjoyed being reunited with her, I sat beside her, rubbed her arm, and started pumping... and what do ya know, I got a few drops! As the night progressed, I got more and more drops each time I pumped! So it was a catch 22... I needed to make milk for my baby, but my boobs needed my baby in order to make milk! But I can't actually nurse her yet even though we are back together now.
Mira cannot be held or moved around yet at all while the temporary spinal fluid drain is connected to her head. The drain will be removed on Tuesday during her shunt placement surgery, and after that we'll be able to handle her! She can't have any pressure put on her back at all, so we won't be able to hold her the way a baby normally gets held, but I can't wait to lay her belly on top of my belly and just cuddle with her!
She's so strong, too! The nurses were yelling at her, in a very impressed kind of way, because she kept lifting her head up and wiggling all around! They were like "What are you doing? Where do you think you're going, little lady?!? You're not supposed to be doing that right now!" They're also very impressed with how much she weighs! They said they're not used to having this much baby to work with, and that her being so big is a great sign of how healthy she is!
Her incision is healing wonderfully, but she still isn't showing much sign of having sensation in her legs or feet. Only time will tell, though. She certainly has function of her upper body! She moves her arms all around, picks herself up off the bed a little bit, moves her binky around, and even grabs ahold of the mattress and blankets! I can also see the difference in her face now that the drain was put into her head. In the pictures I have of her before, her eyes and face were really swollen from all of the pressure in her head from the hydrocephalus. Her head was pretty swollen, and her facial features were definitely distorted because of it. But now that the drain is in place and has had some time to relieve her ventricles, her eyes aren't quite as puffy, and her facial features are starting to look unaffected. She's been opening her beautiful little eyes a lot, too! They're gorgeous, of course! She also has the cutest little butt in the whole world, which is good, because hers has to be hanging out all the time! In order to prevent any interference or irritation with the healing of her incision on her back, she has to be on her belly at all times, and her diaper has to be folded down away from her incision. So her little butt is sticking up out in the open for all to see all the time... so like I said, good thing she has the most adorable butt ever, because I never get tired of looking at it!
I first felt relief during this experience when I got news that she made it out of her surgery yesterday. And now, I'm feeling the same type of relief just knowing I'm not being kept away from her anymore. I'm so relieved that I'm here now, and that no matter what we're about to go through, we are gonna go through it together! Everything else just feels so small in comparison to all this... like everything else is going to be okay because it just has to be in comparison. I'm confident that THIS is going to be okay, so if all of this can be fine, then everything else in life can be, and will be, too! Mira is an inspiration, and she doesn't even know what that is yet! If this little girl, this brand new baby Joe and I made from scratch, this tiny little life, can be so strong and fight through so much and make it look so easy to be such a miraculous person, then there's really no excuse for the rest of us! Being amazing no longer seems optional because everyone is amazing, and Mira has shown me that you can be amazing without even trying! To her, she's just living, she's just surviving... but to me, she's moving mountains, performing magic, and being a hero! She's my little hero! I don't think I've ever looked up to someone so much in my whole life, especially someone so small! We definitely picked the right name for her... Mira Cole is a miracle!
It feels so good to actually feel like her Mommy! Don't get me wrong, I know she's mine, and have known that... but going from being pregnant, to having your baby taken from you immediately, to only seeing pictures and videos of her for days... it kind of makes you feel like you're not doing what a Mommy should be doing, like a Mommy would be right there, like a Mommy would be more involved! It feels like she's not real, she's just this beautiful little thing off in the distance somewhere, but she's not really here. Well not now! Now I got to be here! I got to claim her, and be involved, and show her that Mommy is here, and I'm not going anywhere, because I am Mommy, and Mommies are here to stay!
Mommies are also here to feed babies, which is why I'm ecstatic to report that I was able to pump 4 cc's of colostrum tonight! She is eating roughly 10 cc's per feeding, so she'll still need formula until my supply builds up to normal, but my breasts are finally on the way to being worthy again! Mira was the key all along! After I got to her and enjoyed being reunited with her, I sat beside her, rubbed her arm, and started pumping... and what do ya know, I got a few drops! As the night progressed, I got more and more drops each time I pumped! So it was a catch 22... I needed to make milk for my baby, but my boobs needed my baby in order to make milk! But I can't actually nurse her yet even though we are back together now.
Mira cannot be held or moved around yet at all while the temporary spinal fluid drain is connected to her head. The drain will be removed on Tuesday during her shunt placement surgery, and after that we'll be able to handle her! She can't have any pressure put on her back at all, so we won't be able to hold her the way a baby normally gets held, but I can't wait to lay her belly on top of my belly and just cuddle with her!
She's so strong, too! The nurses were yelling at her, in a very impressed kind of way, because she kept lifting her head up and wiggling all around! They were like "What are you doing? Where do you think you're going, little lady?!? You're not supposed to be doing that right now!" They're also very impressed with how much she weighs! They said they're not used to having this much baby to work with, and that her being so big is a great sign of how healthy she is!
Her incision is healing wonderfully, but she still isn't showing much sign of having sensation in her legs or feet. Only time will tell, though. She certainly has function of her upper body! She moves her arms all around, picks herself up off the bed a little bit, moves her binky around, and even grabs ahold of the mattress and blankets! I can also see the difference in her face now that the drain was put into her head. In the pictures I have of her before, her eyes and face were really swollen from all of the pressure in her head from the hydrocephalus. Her head was pretty swollen, and her facial features were definitely distorted because of it. But now that the drain is in place and has had some time to relieve her ventricles, her eyes aren't quite as puffy, and her facial features are starting to look unaffected. She's been opening her beautiful little eyes a lot, too! They're gorgeous, of course! She also has the cutest little butt in the whole world, which is good, because hers has to be hanging out all the time! In order to prevent any interference or irritation with the healing of her incision on her back, she has to be on her belly at all times, and her diaper has to be folded down away from her incision. So her little butt is sticking up out in the open for all to see all the time... so like I said, good thing she has the most adorable butt ever, because I never get tired of looking at it!
I first felt relief during this experience when I got news that she made it out of her surgery yesterday. And now, I'm feeling the same type of relief just knowing I'm not being kept away from her anymore. I'm so relieved that I'm here now, and that no matter what we're about to go through, we are gonna go through it together! Everything else just feels so small in comparison to all this... like everything else is going to be okay because it just has to be in comparison. I'm confident that THIS is going to be okay, so if all of this can be fine, then everything else in life can be, and will be, too! Mira is an inspiration, and she doesn't even know what that is yet! If this little girl, this brand new baby Joe and I made from scratch, this tiny little life, can be so strong and fight through so much and make it look so easy to be such a miraculous person, then there's really no excuse for the rest of us! Being amazing no longer seems optional because everyone is amazing, and Mira has shown me that you can be amazing without even trying! To her, she's just living, she's just surviving... but to me, she's moving mountains, performing magic, and being a hero! She's my little hero! I don't think I've ever looked up to someone so much in my whole life, especially someone so small! We definitely picked the right name for her... Mira Cole is a miracle!
Just Waiting...
I'm waiting for so many things right now! I'm waiting to be discharged so I can get over there and see my little girl and actually get to spend time with her for the first time! I'm waiting for my breasts to cooperate so I can start making milk and feed Mira!
I've never had this much difficulty getting my body to cooperate with what it's designed to do for our children, but then again, I've never had to exclusively pump before, either. Mira cannot be held right now at all, so even when I get over to her, I'll still be relying on my breasts' ability to respond to plastic pumps instead of a baby's mouth.
The doctors confirmed that they are going to start feeding her today, and if I can't get my milk to come in, they're gonna have to give her formula. I'm trying so hard to make milk, but it's just not coming in!
Most of the one ounce I posted about yesterday had to be thrown away. It turns out that I was trying so hard to pump, that I was actually damaging myself. A lot of the contents within the colostrum I had pumped out turned out to be my own breast tissue. I guess I was actually pumping so hard just to try and get something out, that I was actually pulling out my own breast tissue in the process. Obviously, Mira cannot eat breast tissue, so most of what I worked so hard to pump out had to be thrown away. I wasn't thinking about how much I was hurting myself because I was so focused on trying to make sure I can feed my daughter! And now, I'm lucky to get even a single drop!
I'd be lying if I said I'm not getting discouraged. But discouraging or not, I'm not giving up! No matter what it takes, I WILL make milk for Mira! I actually slept for the first time last night, I'm eating regularly, I'm trying to keep my stress levels down, and soon I'll be right in front of her, so hopefully, all of these things will aid me in being successful at making milk! Until that happens, I'll just be waiting, waiting anxiously for things to work!
I've never had this much difficulty getting my body to cooperate with what it's designed to do for our children, but then again, I've never had to exclusively pump before, either. Mira cannot be held right now at all, so even when I get over to her, I'll still be relying on my breasts' ability to respond to plastic pumps instead of a baby's mouth.
The doctors confirmed that they are going to start feeding her today, and if I can't get my milk to come in, they're gonna have to give her formula. I'm trying so hard to make milk, but it's just not coming in!
Most of the one ounce I posted about yesterday had to be thrown away. It turns out that I was trying so hard to pump, that I was actually damaging myself. A lot of the contents within the colostrum I had pumped out turned out to be my own breast tissue. I guess I was actually pumping so hard just to try and get something out, that I was actually pulling out my own breast tissue in the process. Obviously, Mira cannot eat breast tissue, so most of what I worked so hard to pump out had to be thrown away. I wasn't thinking about how much I was hurting myself because I was so focused on trying to make sure I can feed my daughter! And now, I'm lucky to get even a single drop!
I'd be lying if I said I'm not getting discouraged. But discouraging or not, I'm not giving up! No matter what it takes, I WILL make milk for Mira! I actually slept for the first time last night, I'm eating regularly, I'm trying to keep my stress levels down, and soon I'll be right in front of her, so hopefully, all of these things will aid me in being successful at making milk! Until that happens, I'll just be waiting, waiting anxiously for things to work!
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