She Gained An Ounce!

Mira gained an ounce at her weigh-in tonight! She has to gain again tomorrow night, and then we could be released on Tuesday, but we're definitely not getting released tomorrow. Either way... she gained weight! Yay! And we didn't even fortify my breast milk or anything! This was all her! You go, little girl, you go!

Taking The Good With The Bad

If there's one thing I have learned with spina bifida, it's that there are ups and downs and roller coaster loops, and you just really gotta keep rolling with the punches because you don't know what gonna happen, and you barely know what to expect.
After we realized on Friday that Mira has been wetting her own diapers a little bit, the doctors allowed us to go from cathing every three hours, to cathing every four. They call it Q4. After a couple days of this routine, she is still wetting diapers in between cathing. If she keeps this up we might be able to cut back even more to Q6, meaning cathing every six hours. I am really hoping for this! Every time a foreign object, such as a catheter, is introduced into the body, you are risking infection. On someone with incisions all over the place, infection is definitely something we want to avoid at all costs. However, cathing every four hours is also a hardship on Mira because she's on a three hour eating schedule. So we are feeding her every three hours, but cathing her every four hours. So with that off-putting schedule, she'll just get to sleep from one thing, and have to wake up for another. I'm glad we are cathing less, but I hate that she's not resting like she should because we have to constantly interrupt her.
Some might say to switch to feeding her every four hours, but that won't work either right now because for some reason, even though she's eating a really healthy amount, she is losing weight every day. She lost two ounces in just yesterday. We thought we were going to get discharged tomorrow, but if she doesn't start gaining weight, let alone stop losing weight, then there's no way that's going to happen! It might already be out of the question, and I'm just not aware of it yet. They weigh her each night, so I've been praying all day for tonight to be a good weigh-in.
If she does lose weight at tonight's weigh-in, then tomorrow the neonatal specialist and I will probably discuss fortifying my breast milk. This is where they add calories to it. I found out that no matter what you eat, your breast milk is still only going to have about 20 calories per ounce. So stuffing yourself with cheeseburgers isn't going to add fat content to your breast milk. But the nurses can fortify my breast milk and pretty much make it contain as many calories as they want. Joe and I agreed that if the neonatal specialist wants to do this, then we will. She would still be receiving the nutritional value of my breast milk, and we think she just may need some caloric help to bounce back after all the trauma her body has endured through the surgeries. She just needs a break, and she needs some help. If she loses weight tonight, I'll be prepared to have the breast milk conversation tomorrow. If she gains weight tonight, I'll be prepared to pack my bags! And if her weight stays the same, I'll be prepared to start the 48-hour watch with the nurses.
The nurse practitioner informed me today that if Mira doesn't start gaining weight, then she'll be put on a 48-hour watch before we can leave. However, that 48 hours won't start counting down until she gets weighed and it shows she gained. So if we weigh in at less than or equal to her weight from yesterday, we won't be leaving until 48 hours after a weigh-in where she gains. And she has to continue gaining, or else the 48-hour requirement will start all over.
Basically, pee and weigh-ins have never been on my mind so much in my life! I don't even own a scale at home because I've never been the type to weigh myself. Now, weight is almost all I can think about because so much is teetering on the topic! I want to get out of here, I want to take her home, and I'm ready to be responsible for her. But at the same time, I want to make sure she's as healthy as she should be before we leave, so until she gains some weight, it's gonna be on my mind! I'll update again as soon as I know the outcome of her weigh-in. Pray for fat, people! Pray for fat!

Sisterly Love

Today was a bit of an emotional roller coaster!
Mira, even though she is consistently eating 65+ cc's per feeding and they only wanted her to be eating at least 55, is still losing weight. When they did her nightly weighing tonight, it showed that she lost another 2 ounces in just the past day. I just don't understand why she's still losing weight! We've been focusing so much on monitoring her consumption, and all day Tammy and I thought everything was gong great, just to find out that not only is her weight NOT better, but that it's still getting consistently worse. All we can do is keep feeding her, and hope that her body comes to terms with all the trauma it's been through so she can start gaining weight! Fingers are crossed, and lots of prayers are being sent up by yours truly.
Mira's weight loss wasn't the only thing that was difficult to deal with at the end of the night, Joe already had to leave yesterday, and tonight my sister had to go home. We knew all day that she had to leave at some point, but we both kept stalling and putting it off. I know that not everyone is blessed with being really close to their family members, but I only have a few people that truly get me. They understand more about me than I understand about myself; those people are my fiancé, Joe; my friend, Allison; and my sister; Tammy. When things are tough, they are who I turn to; when things are great, they are who I want to share it with; and when things are boring, they are who I want to be bored around.
Tammy has been with me every step of the way through all of this. She came with me to my OB appointments, when Joe and I were first told something was wrong on the sonogram, we went to her work so I could cry on her shoulder, and when we went in to deliver Mira, Tammy stayed in the hospital with me and never left my side until she had to leave tonight. It was very hard for both of us. I'm lucky enough to have a sister that cares so much about me, but also knowing that she's my best friend is a blessing I would never trade.
When the nurse practitioner came into our room to discuss Mira's weight loss, Tammy told her she had to leave tonight. I started crying right after she said it. Then Tammy started crying. Then the nurse practitioner started crying. After she left the room, Tammy and I sat on the couch, so we could hold each other, and look at this miraculous baby while we cried it out. We know we'll probably see each other in the next week, but neither one of us wanted her to leave.
We packed her bags up, and walked to her car together. We had been joking and laughing together during our walk, but as soon as we hugged each other goodbye, we started crying again. I told her how thankful I was to have her, and she told me how proud of me she is through all of this. She's my big sister... my support system... my footsteps to walk in... But tonight, we were simply two people hugging and crying in a parking garage because we love each other so much, we couldn't stand the idea of leaving each others' side.
I already miss her dearly, and I love how much she loves my children, but I know that as soon as Mira and I get home, Tammy will be there, because she's always there, and it never fails. For now, I'll be able to get my practice in for taking care of Mira by myself, which is probably a good idea anyways to prepare for bringing her home.
Right now I'm just praying for her weight to start coming up, and I'm thanking God that I have the sister I have! I love you, Tammy, and I thank you for being the person you are!

Urine Has Never Been So Interesting!

Mira has been eating about 70 cc's each feeding, but Tammy noticed each time we feed her that amount, she always spits up. We may have gotten so scared about the feeding tube idea that we started over-feeding her, so we cut it back to 60 cc's per feeding, and we'll see how that goes. Because of the focus on knowing exactly how much she's consuming and exactly how much urine she's expelling, we have put nursing on hold. For now, I'm going to pump so we can see exactly how much she is eating, and we'll revisit breast feeding in the comfort of our own home.
Because we are monitoring her feeding so closely, and she is still not gaining weight, the nurses informed us that we won't be discharged today, and that the absolute earliest we will be discharged is Monday. Because of this, Tammy and Joe cannot stay until the end of our hospital stay, as Joe is expected to go back to work Sunday, and Tammy has to be back at work on Monday. Joe decided to leave tonight to get some more of our running done, to get our house more Mira ready, and to take a lot of our items that we don't need here back home. Tammy will stay the weekend, but head home before she has to go to work.
After Joe left, I ended up calling him a few hours later with some very good news! As the swelling in her spinal nerves goes down from the trauma they've endured during surgery, more function and sensation is developing from her waist down. So I called Joe to not only tell him that she's been moving her legs, but for two diaper changes/cathing times in a row, she peed her own diaper and we got nothing from her cath! This means that she actually emptied her own bladder! This is the first time since she was born that this has happened... TWICE! Joe and I celebrated over the phone, and he told me to give her a BIG kiss from Daddy because he's very proud of her! Tammy and I couldn't get over how much of a huge step this is for her! I never thought urine would be so interesting!
Every time I think I couldn't be more amazed by my children, I am proven drastically wrong! The beauty of every little step ahead they accomplish is so wonderful... I am left in awe over and over! After everything Mira has been through in less than two weeks of living in this world, she has taken it all in stride, overcome every obstacle thrown at her like it was no big deal, and still manages to be absolutely adorable! I don't know how she does it, but God certainly knows, and Mira absolutely astounds me with her resilience, strength, and beauty!

A Feeding WHAT???

On Thursday, Tammy, Joe, and I were still getting used to being the primary care takers of Mira. In the other room, you were hard-pressed to be able to do anything that involved taking care of her, but in this room, the parents do most of the care taking. We are on a three hour schedule.
3, 6, 9, 12, repeat. Every three hours Mira gets catheterized and fed. The difference now is that with each feeding, I'm nursing her and then encouraging her to eat more from a bottle while she tries to get used to the breast.
The day seemed pretty uneventful. Physical therapy stopped by to let us know that splinting isn't really an option for her clubbed foot because of the severity and location of the curve. Since the curve occurs mid-foot, a splint would most likely cause damage to her skin instead of helping her bones. Orthopedics also stopped by to consult on whether or not they would start casting her now to prepare her foot for corrective surgery. They also decided against casting because of the potential skin damage it could cause. They think it would be best to wait until all of her current incisions and surgeries are recovered from before they start another surgical plan.
As the night came to a close, and we all thought there was a possibility of us being discharged tomorrow, Friday, we were informed otherwise, and it caught us off guard.
Joe and I went to the nurse's station to deliver more breast milk that needed refrigerated. Mira's nurse informed us that Mira's weight has consistently been dropping, that she needs to be eating at least 55 cc's per feeding, that she's only eating about 30, and that if she doesn't meet the 55 cc's per feeding requirement in the next two feedings, she will be put on a feeding tube. Not only was this a scary thing to hear, but with how amazing she has done through everything she has faced, this would obviously be a step in the opposite direction.
I rushed back into Mira's room to repeat word for word what was said to me to Tammy and Joe. Tammy and I both hopped on Facebook and started asking for prayers! The next three feedings, Mira ate SEVENTY cc's!!! That's right, 70!!! The power of prayer, the resiliency of a little one, and a baby's sheer will power should never be underestimated!
Talk of a feeding tube went out the window, and we couldn't have been more proud of our little trooper!

One Week Old!

On Wednesday, April 24th, Mira turned one week old! When I got to her room in the morning, I was supposed to call Georgia, the spina bifida clinic representative, to come meet us so we could continue with our training on how to care for and handle Mira, as we had been training all week. However, as soon as I got to her room, the nurse told me that I could hold Mira for the first time! Everything else went out the window and I completely forgot about any other responsibility I had. I just held her! It was the most beautiful gift!
She has to be held a certain way as to not put pressure on her back at all, or on her shunt, or on any of her incisions; and she has a lot of cords and tubes attached to her that have to be compensated for. While this is tricky, it only made getting to hold her that much more miraculous! Finally getting to cradle her, and feel her weight, and bond with her through physical contact and close proximity... it was amazing! I can't express how relieving it was to finally hold my own child after a week of seeing her confined to an incubator on her belly with minimal human contact. I wonder if she felt loved more than she previously had. It was also amazing because she laid one side of her head against my chest and kept her eyes open as she intently listened to me talk. I would imagine that this was the first time she felt something really familiar and comforting because she would have, for the first time since birth, been hearing my voice in the same way she would have experienced while in the womb. I hope that she took great comfort in that, and from how content she was, I truly believe that she did!
Like an hour later, Tammy reminded me that we needed to call Georgia. As she was arriving to our room, the nurses informed us that we were being "demoted".
Here, being demoted is a great thing! It means we were moved to a different part of the hospital because she was doing so well that she no longer needed to be under constant supervision of critical care. We're still considered to be in the NICU, but in an area that means she's doing much better, and almost ready to go home. At this point they were talking about possibly releasing us on Friday.
Once we got into our new room, Georgia went over a few things and then told us that we had graduated from our training, and as far as she was concerned, we were ready to go home! Mira also got a VCUG on this day, which is a test that reveals whether or not her bladder is refluxing urine back up into her kidneys. If this happens, it means not only is cathing not working, but that her kidneys will start to get damaged. Thank God the VCUG revealed that no urine refluxing is happening, and that her kidneys look perfectly healthy! Yay, Mira!
When she came back from her VCUG, I got to nurse her for the first time! It was wonderful! She was definitely having some difficulty with it, as she was definitely nipple confused. Considering that she's only been bottle-fed since she was born, I could imagine that a breast was a bit overwhelming! We continued to work on it for the rest of the night, and allowed her to also eat from a bottle after each nursing session.
Oh, and Joe's grandparents visited us this day, so Nana got to actually hold her unexpectedly when they arrived! And Mira started wearing clothes on this day, as well! Cute little shirts that button up the front, and blankets that can actually be swaddled around her! That's my big girl; regulating her own temperature!
This was definitely a great day! One week old, and being demoted in the best kind of way! Getting to hold her and nurse her for the first time! Having Georgia tell us that we're ready to care for her! It was lovely! So very lovely!

She's Mine!

Today was so great! Mira had her surgery for her shunt placement, and she did fantastic! We also started our training today with Georgia from the spina bifida clinic.
Because her temporary drain is out, and her shunt is in, we are finally allowed to handle her a little bit. She still can't be picked up and held, but she can be lifted a little bit, and be placed on her side. For this reason, I finally got to feed my baby today! I still haven't been able to nurse her, but she's eating breast milk from a bottle, which I finally got to give to her! I got to cradle her beautiful little head! And I was able to see both sides of her face for the first time because I was allowed to put her on her side while she was eating! Her face is so gorgeous! She looks so much like Dustin when he was a newborn, just with Aryanna's lips! All of my favorite faces mixed together! So so so beautiful! I loved holding her face, and feeling her move with my own hands! I finally got my hands on those chunky, beautiful, little cheeks, and got to cradle that chunk in my palm! It was wonderful! I could talk about it all day, but other stuff happened today, too!
Since we were training with Georgia today, we learned A LOT!!! I took five pages worth of notes during our conversation. Much of the information was about neurological symptoms we'll be looking for with Mira. Different sets of symptoms indicate different problems pertaining to her different complications. Some symptoms reveal infection, some reveal a problem with her shunt, some reveal compression of her chiari malformation, some reveal an injury that she may not be aware of because of her lack of sensation in her lower extremities, etc. Its quite in depth, and it's astronomically important! Part of our training today was hands on training as far as how we will be handling her; this includes catheterizing. So, I am happy to report that I successfully cathed her once with help and successfully cathed her once by myself (with supervision).
With finally getting to handle my own child; feed her, cath her, clean her, and change diaper... I finally feel like she belongs to ME... not to the hospital. It's finally real, that she's MINE! All mine! That I get to take her home soon, and that she won't be in that incubator forever being handled by gloved medical professionals only. Nope! Not for long! Because she's MINE, and soon (possibly Friday!!!!!!) I'll get to take her home!
There are no more surgeries scheduled in her immediate future, so once we take her home, aside from regular appointments, she gets a nice long break of normalcy! Thank God! Because Lord knows she deserves it! I love her so much, and I couldn't be more thrilled for her! She finally gets to just relax, and heal, and be loved! And oh, is she loved! She has already received so much love from so many people! It's beautiful! I'm so proud of her for doing so well through everything and making this typically horrendous situation look easy! She's the strongest person I've ever known, and... she's MINE!

Way Too Eventful!

Yesterday was completely uneventful... I wish today would have been as boring!
Poor Mira had a painful day! She had IV sites in both hands, and both of them went bad at the same time. Sometimes the body rejects IV's, especially if they've been in there for a while, because the body acknowledges an invader in the body, so it shuts down the pathway of the invader (the IV). Both of Mira's went bad at the same time, so they had to try and get another IV going. They got one in, but it immediately blew. They tried other spots of her body to get an IV in, and no other potential IV sites were working. As you can imagine, during all of this poking and prodding, Mira was losing her poor little mind, and just wanted to be left alone. Nobody likes needles, especially a baby who doesn't understand why she's getting poked over and over and over again. Eventually the charge nurse said enough, and that Mira's body simply needs a break! Luckily she was eating enough to where they didn't have to worry about her being dehydrated, so they were able to give her a break and they got an IV into her foot later in the day. So her torture is over for this 24-hour period, but I with she could've just had another content, lazy day.

The day was also unfortunately eventful for me, as well. Yesterday morning I was getting headaches off and on, and by the end of the night, it was a very consistent headache. I thought I would feel better once I got some sleep. I was mistaken. When I woke up today, I felt ten times worse than I had the night before. My headache was a borderline migraine, and my abdomen was much more sore than the day before along with being really nauseous. I called my OB, and they told me to come over to the ER. They got me hooked up to an IV, I slept for three hours, and was feeling noticeably better when I woke up. Thank goodness it wasn't actually what they call a "spinal headache" but we believe it was a natural and unfortunate side effect from the spinal with my c-section. The ER doctor wrote me out a prescription for Benadryl, which I need to use to keep the headache at bay before it makes me throw up (which would be a nightmare with a frssh c-section incision), and told me to make sure I'm sleeping well, keeping my stress levels low, and sneaking some caffeine into my diet here and there. I am feeling much better now, and I'm able to eat without feeling like I'm going to vomit. Thank God! All I could think was how stupid it is for ME to be sick right now when Mira needs me! I told the doctors that I don't have time for me to feel like crap! But, this is a reminder that, as a Mother, you can't possibly take care of your children to the best of your ability if you're not taking care of yourself. So I'm getting some rest now while my sister stays with Mira. We were just face timing, and Joe and I will be back to Mira's side before she goes to surgery tomorrow.

Mira had her ultrasound today to monitor her ventricles and see how they reacted to having her drain clamped. Her head circumference increased by half an inch, and her ventricles filled with pressure, so it is confirmed that she needs a shunt. She will be leaving her room for surgery at 7:30 in the morning tomorrow, her surgery will begin at 8:30, and it will take roughly an hour and a half. After her surgery, Tammy, Joe, and I will begin training on how to care for her at home. This includes what neurological symptoms to look for, how to catheterize her, how to care for her incisions, how to hold her without disturbing her incisions, and more. They think we can finish training, and possibly be released by Friday! I can hardly believe it, but in ready for her, and I just absolutely cannot wait to hold her in my arms!
So, that is the rundown of the day! I don't think I left anything out, but I'm a little groggy still, which is why I'm going to get some sleep now, so if I left something out, I'll be sure to add it in tomorrow. I love you all! Sleep sweet, as I'm hoping Mira and I will tonight, tomorrow is a big day!

Sunday 04/21/2013

Today was a nice, relaxing day. Mira had a very uneventful day, so that's great! She ate really well, she slept really well, and she's healing really well! She weighs 8 lbs. 1 oz. at the moment, and she is 20 and 3/4 inches long.
Her shunt surgery is scheduled for Tuesday. To prepare for that, and to make sure it is absolutely necessary, they had her temporary drain clamped all day today, and will take an ultrasound of her brain tomorrow to see how the fluid has built up in her ventricles in the 24 hour period. There was a possibility that she would've been really uncomfortable all day today because of having her drain clamped, but even with the pressure slowly building back up in her head, she's been doing great!
My feet and ankles are more swollen tonight than they have been thus far, so I am going to prop them up now and get some sleep so I can get back to my little Mira in the morning! Good night everyone! Much love to all of you!

So Many Emotions!

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!

Eating Like A Champ!

Mira's Head Drain, Incisions, and Dressing!

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!

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!

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!

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!

She's Out Of Surgery!

They said Mira did great! They were able to close her back, and they didn't have to take a graft from anywhere else on her. Thank goodness! They did not put her shunt in today, they put a temporary drain in to give her one last chance of clearing out her ventricles on her own, but they're 95+% sure she's going to need a shunt, so they're scheduling that operation for Tuesday. I guess Mira will still be intubated for another three to four hours because its going to take her a while to come out of the grogginess of anesthesia. While she's coming out of it, her breathing will be really off, so she can't be extubated until the anesthesia wares off.
She can't have anything putting pressure on her back for the next six weeks. No laying her on her back, no regular car seat, no holding her the way you would typically hold a baby, no clothes that would press on that area, etc.
We also won't know anything about her leg function or what the surgery may have helped or hurt for a little while. It's not as easy as testing her function whenever she wakes up because the nerves and tissue in her spine will be swollen and freshly manipulated from the surgery. This often causes function to be deceiving. For instance, she could have no leg function when she wakes up, but in a week when the swelling of the nerves go back down, she could be at 100%! There's just no way to know a lot of things right now, but we do know that her first surgery went great, and she's off the operating table, and she's on her way back to Joe right now to recover with her daddy because everything went fantastic today! That's all we know, and I am perfectly okay with that right now! Thank God! Thank you all for your prayers! Thank you, thank you, thank you!!!

Mira's Surgery

Mira's surgery started at 3 o'clock. I have a direct line to the nurse that is receiving updates, so I am to call her at 4:30 to see if she has any updates to give me. The surgeons are definitely operating on her back, but were still deciding as to whether they were going to put in a temporary drainage tube in her head for the hydrocephalus, or if they are going to actually do the shunt operation, as well, at the same time that her back is being operated on.
I'm trying to keep distracted because freaking out isn't going to do any good while she's in the operating room. Instead, I'm going to keep trying to pump so that she will have food for when she recovers from surgery! I love you all, and I'll post more updates as soon as I know something!
Here's a picture Joe sent me of Mira being taken to surgery!

Right before Mira was delivered!

Spinal Cord & Colostrum

I updated this information on Facebook, but I'll share it here as well. When I called over to children's hospital this morning to receive an update about Mira and ask questions, the nurse informed me that the reason her surgery was pushed up to today is because, not only is the membrane covering her tissue really fragile and unusable, but it actually ruptured in one spot, and through that rupture, the spinal cord is out and exposed. This is exactly what we didn't want to have happen. But hopefully, by them moving up the surgery, we can avoid an infection and/or any more damage being done to the exposed cord, which are our two big concerns right this second. She still hasn't eaten anything, and she won't be allowed to eat until at least 24 hours after her surgery, so I'm trying to prepare a milk supply for her.
After all night of pumping, I've got just an ounce of colostrum. For those who don't know, colostrum is the type of milk that comes out of your breasts directly after having a baby. It is designed to clear out their system from months of being in the womb, and it prepares their little gut to start digesting properly. Colostrum is much thicker than regular milk, which is why it's so difficult to get out of the breasts, but within a couple days, regular breast milk will start to take its place, and then things get much easier from there! I'm just gonna keep on working on it! I've never had to pump in the hospital before. I've always fed my children directly from the breast, so I never realized how difficult it was to stimulate milk production and get the colostrum out with a pump! But, regardless of how difficult (and at times, painful) it may be, it'll be so worth it when she can finally eat!

Birthday Baby!

Happy Birthday! ~Mira Cole McGuirk~ 8 lbs. 4 oz. 20 inches long! 4/17/2013 @ 3:58pm

The run down of Mira is that she's absolutely stunningly beautiful! She reminds me of Dustin and Aryanna, but her cry is unique to herself. Its a dainty, lady-like cry, but still gets the point across with those healthy lungs if hers, that doesn't remind me of Dustin's or Aryanna's cries. She has gorgeous darker, but not black, hair, chubby features, and a perfectly beautiful baby complexion! Her perfect dark baby eyes are the same shape Aryanna's were, and her perfect little button nose is definitely that of a Dustin look alike!
Now, down to the medical side of it. The gap in her spine is unfortunately much higher than we thought. We had anticipated on it being right above/starting at the top of her little butt crack. However, if you look at her back and find the bottom of the back of her ribs, her defect starts just below that level on her spine. This is unfortunate because wherever the open neural tube occurs, from that point and below, nerve damage is done. So the lower down the defect, the better the prognosis, and the location of the defect is much higher than we thought it was.
Her left foot is a club foot, which we already knew, but the degree of it is more severe than what sonograms had shown. The way/direction in which it curves is not as simple as we had thought, and the neurosurgeon informed Joe that we will need to take frequent and extraordinary measures to try and correct it when the time comes. It seems we are definitely looking at multiple surgeries, starting at an unknown time, because it no longer seems realistic to think her foot can be gradually corrected with different sets of braces and casts.
With her left leg having the club foot, you would think that would be the bad leg, however opposite seems to be true. Even with the clubbed foot she was still moving her left foot, left toes, bending her left knee, and rotating/picking up her entire left leg. Her right leg is not as functional. While her right foot is perfectly healthy, and I saw her wiggling her right toes, she is not doing much with her right leg in whole. As I watched her transport team move her around through videos, when she is picked up, she compensates for the movement with her left leg, but allows her right leg to dangle as is. I have not seen her bend her right knee or move the leg substantially from the hip. So, while we thought her left leg was going to be the problem, we are mistaken for the time being.
We also originally thought her myelomeningocele was "closed" meaning the spinal cord and meninges are completely covered and protected by skin, and that skin can be used to healthily close the defect during surgery. However, Mira's turned out not to be closed in a way. The cord and meninges are not just hanging out of her back, so no leaking is occurring, BUT, the membrane covering the defect is just that, a very small, weak, unusable membrane that isn't really classified as skin, and does not protect the tissue beneath it like skin would. This causes the already high risk of infection to go way up, so they are now moving her surgery to this morning, Thursday, instead of Friday morning. There is now NO way I'll get to be there, but there was little chance before, as well. I just hope the sac stays closed, no leaking occurs, and infection does not take place. I am also curious because in order to close her back, they need to leave extra skin over the area of her incision so that as she grows, and it heals, the extra skin can stretch and heal properly instead of tugging and pulling. With the membrane covering her defect being so weak and unusable, I have no idea where they are getting the extra skin to close her back properly that will compensate and allow for healing without tugging complications to the incision. So I guess that's another thing I will find out tomorrow, hopefully!
Her hydrocephalus is progressing rapidly, so the surgeons are unsure as to how they are going to compensate for that. They had originally planned on putting a temporary drainage tube in her head, operating on her back, and then a few days later going back in and operating to put in her shunt. Now they are debating on whether or not the shunt is more urgent than that because of the severity of it, which they were able to find out about more in depth today during pre-op testing, so they may place the shunt while they are operating on her back at the same time. I guess I will find out what they decide tomorrow.
Her arms certainly are strong, though! Ive been able to observe her through the videos Tammy took on her phone while I was in recovery, before Mira was taken to Children's, because as mentioned before, I've only seen her in person for a total of a minute and a half. She is already doing a fantastic job at grabbing things. They have a little blue board attached to her arm and hand to keep her from damaging her injection sight, and she was waving that thing all around! Grabbing ahold of it with her other hand, and back and forth. She lifts the whole contraption right up, lifts her arm up in the air, and ends up looking like she's talking on a blue telephone (which also reminds me of Aryanna). She was moving her head quite a bit to try and guide her pacifier back into her mouth, using the blue board to her advantage like a paddle (so she's smart too) and I wonder if, like our other children, she would be able to pick her head up on her own during her first day of life or not. But I didn't get to see her held or lifted upright at all, so I won't get to know that for sure. She certainly looks strong enough for it in that area of her body, though!
So, many aspects of her defects were not what we hoped, and ending up being more severe than we had anticipated. However, nothing is really final at this point, and all we are looking at is a very long road of uncertainty and possibilities to maybe make things better. So we'll take this one step at a time, starting with her surgery or surgeries tomorrow! So I believe that I covered everything new that I know about Mira and her health, and I will continue to keep everyone as posted as possible! We love you all, and the prayers, birthday wishes, and even just your kind thoughts are very heart warming! Much love to all of you and thank you again! Happy birthday, Mira! I couldn't be more thrilled to share this day with you for the rest of our lives! Mommy loves you and misses you so much!

Getting to touch Mira for the first time!

They brought her in, and took her away within roughly sixty seconds. Today was the best and worst day of my life. I vented my frustrations about my poor treatment at this hospital, but that doesn't even compare, in any universe, to how heart wrenching it was to let them wheel her away from me. I got to feel the softness of her arm skin, and the light touch of her hair for a few seconds, and that was it. I couldn't smell her or hold her or feed her. Touching her and talking to her for those few seconds was one if the best moments I've ever experienced, but all too soon, the transport team said "Okay, we have to get moving now." and my world shattered. I took my hand off her skin and held my head to try to keep my sanity in, but it hurt more than any physical thing I was feeling in that moment. I tried to hold the sobs in, but I just couldn't. That moment, releasing her skin from my own so they could close her incubator and take her away, was one of the most difficult things I've ever done. Very few things actually hurt a person's soul, but that was one of them... it hurt my soul.
I held my head, I grabbed my chest, I tried to focus on the physical pain I was in to distract myself, but it didn't work, there was just no holding in that cry. I'm glad I got to see her at all! I'm glad I got to touch her at all... but I'm not gonna lie, I was really banking on getting to spend more time with her than a singular minute, and I was crushed when that was all I got... just a single minute. One if the best moments of my life, touching and seeing her, followed by one of the worst moments of my life, letting her go.

Trying To Have A Baby In Chaos!

Joe and I arrived at the hospital and were checked in by 10:30 this morning. The c-section was scheduled for 1 o'clock in the afternoon, but after waiting a few hours, being monitored, giving blood samples, prepping for surgery, and asking questions, we kept getting pushed back. First we were pushed back because an emergency came into the ER. (It turns out, last week, the maternity operating rooms and overnight patient rooms got flooded, so they are having to perform c-sections in the regular OR's, and they have no rooms in the maternity section of the hospital set up for patients to stay the night in). So, we got pushed back for an emergency from the ER, and then we got pushed back again because the anesthesiology staff was incredibly understaffed and overbooked. After five hours, they still didn't have a room set up for us, so before they took Joe and I to the OR, Tammy, Joe's Dad, and Joe's Poppup had to take all of our bags back outside to our cars because they didn't have anywhere for us to stay.
Finally, at about 3:30, they wheeled Joe and I down to the OR while Tammy, Joe Sr., and Poppup waited in the waiting room. As Joe and I were being pulled up to the OR doors, the staff inside started telling my nurses not to bring me in because they weren't actually ready yet in that room. However, they already had a room ready for us, OR 10, for an hour and forty minutes, but that OB changed their mind and insisted on waiting for this room, OR 8. This didn't seem to make sense to any of them, nor to Joe and I, but ten minutes later, they were ready and started prepping me while Joe waited outside the OR.
They were very kind and likable staff members, and it was easy to trust them. Their system is clearly flawed in a very chaotic and unorganized way, but I am sure that each of them would be superstar medical professionals if they were in a better-operated facility with less chaos. So as Joe waited outside (they make him wait until after the 'scary' stuff is over before he is allowed into the OR with me), they prepped me by moving me onto the operating table, giving me my spinal shot that contained the local anesthetic (they excluded putting morphine, a normal ingredient added to the anesthetic shot in almost all cases, in my spinal because during my delivery of Aryanna I had an allergic reaction to it, so even though the spinal acted as a local anesthetic, it would ware off quicker and would not act as a pain reliever), inserting a catheter since I was numbed from the bottom of my ribs down, giving me meds to counteract the nausea and vomiting that is often caused by a spinal, and by cleaning and draping me appropriately for surgery.
When I was properly draped, numbed, and drugged, they allowed Joe to come in, but their drapes were covering my arms so I didn't even get to hold his hand. However, just knowing he was right behind my head was enough to keep me relaxed and breathing. Which, breathing is actually rather interesting and deceitful after receiving a spinal. The bottom part of your lungs are actually numb, so your body makes you think you're not getting enough air or deep enough breaths, when really you're breathing just fine, you just can't feel it. So that's always interesting!
Mira was born, weighing in at 8 lbs. 4 oz. and 20 inches long! They let Joe go over to the corner she was in and take a few pictures with his phone to bring over to me. I could hear her crying, but I couldn't see her at all so I stared at the pictures of my beautiful baby girl that Joe held in front of my face for me. Before taking her up to the NICU, they wheeled her over beside me so I could actually lay eyes on her for about 15 seconds, and then Mira, Joe and the NICU staff left the room.
I dozed off here and there while they finished up my surgery, and they had me in the recovery room at almost 5 o'clock on the dot. They told me I would be in my own room by 6 because I needed to be in recovery for at least an hour, even though I was already lifting both legs and my hips by 5:30. They almost took Mira away to Children's without letting me see her, but I kept insisting to my nurse to call whoever she needed to call so I could see my daughter before she left. I got to see her for about one minute, and then they left.
After that, it was six o'clock, I needed to get to a room so I could call the midwife to come pick up my placenta, i needed to star pumping as soon as possible (which they assured me previously that they would bring me a pump right after delivery to start stimulating breastmilk production ASAP....very very important!), I still hadn't received any pain meds, and it had, completely unnecessarily because of their terrible scheduling, been almost 24 hours since I had eaten or drank anything. 6 o'clock came and went... no room, no food, no pain meds, no breast pump. 7 o'clock passes... no room, no food, no pain meds, no breast pump. By 8 o'clock, I was beyond frustrated, in a ridiculous amount of pain, and completely starving. My stomach would growl, and the vibration of it would send pain shocks through my incision which was no longer numbed in any way.
Finally at 8:30 pm, they got me to a room in a completely different area of the hospital with staff that aren't even trained in maternity/post-natal care. BUT, for the first time, I felt like I was with staff members that cared enough to figure things out and take care of my needs instead of just make excuses and blame other people for not taking care of me properly. They finally gave me pain meds that made it tolerable to breathe deeply. They got me food. They got me my breast pump. And damn it, they had some actual compassion and showed it! By this point, it was too late for the midwife to be able to come pick up the placenta, so now I'm going to have to wait at least a extra day or two before receiving those breast milk helping benefits thanks to this hospital's terrible functioning. I'm also having a hell of a time getting any milk out of my breasts because I had to wait almost four hours later than I should have to get a jump on milk production.
I understand that things get hectic, that emergencies happen that change plans, and that many people try to do the best they can with what they have. BUT, there is absolutely no reason why it should take a SCHEDULED c-section patient, 10 hours after admittance to get into a room. It's not like I was a surprise, or that they didn't know I was coming... they just didn't care enough to plan on where to put me once the surgery was over. Also, when you tell a patient she can't eat at all the day of her surgery, and she listens, and you tell her she can eat afterwards, you damn well better feed her. Instead, because they took so long to get me into a room, I asked if I could finally eat when they got me into my room because I had been asking the whole time in recovery (over three hours of wasted time) and then the nurse goes "Oh, well, the cafeteria is closed now so I don't know what you want me to do, ya know." Hmmm.... Well, I wanted you to feed me when you said you would, hours ago, and I wanted you to NOT promise me food, and then personally be the one who screws me out of the chance to eat by wasting time for no reason instead of just getting me a room and letting me eat for the first time in a day! I was so frustrated at that point with their complete disarray that lead to negligence during my care the WHOLE day, all I could do is cry and complain and try to avoid a total meltdown. My sister, seeing where this was headed (probably me screaming unintelligible words at all the nurses because no one understands mad, ugly cry, yelling) said she would go find me food herself and until then to eat the snacks out of her purse and to stay calm. So she went and found me a salad. It was delicious! But my point was, if my sister hadn't been there to save the day, would they have made me wait ANOTHER day to eat simply because they suck at planning, multi-tasking, or care-taking?
I am honestly incredibly glad now that Mira was taken over to Children's hospital because I know that facility is top notch in every way, and I would hate to think that my child, who needs a lot of help right now, was getting treated as poorly as I have been all day.
Okay, now that I vented about the terrible and completely non-functional West Penn Hospital, and talked about the ins and outs of the procedure, I'll write a post about the things that actually matter, like Mira! Thank you for letting me vent, new post (that's not as bitchy) coming right up!

Ready To Go!

I think Joe and I got everything done that I wanted to have done before we leave for the hospital. We rearranged the house to make things more functional for bringing a newborn home to. We deep cleaned many areas of the house where Mira will be at a lot. Our bedroom is baby set-up and friendly. And our bags are packed!
It was really hard letting Dustin and Aryanna go with Joe's Mom today, though. That made everything very real for me, and it was emotional not knowing exactly when I'm going to see all of my children again. They drive me crazy when they're home, but I did not want to let them leave today! I miss them so much already! I said "I love you" to them probably a hundred times before they left, and Joe's Mom was crying a little bit too as she hugged Joe and I goodbye. I didn't cry until after they left... then I sat on my porch wishing they were still home, but also trying to tell myself that maybe we can arrange a family member to bring them down to visit within this next week. I'll be so happy when all three of my children can be together, right in front of me! It will be the most beautiful sight I've ever seen, I'm certain!
I'm holding off the emotions right now by focusing on all the things that need done. I'm excited for sure, but also a bit nervous, and driven, and all kinds of things! Joe and I have to be at the hospital in almost exactly 12 hours from now, so I am going to get some sleep now! I'll be sure to update my blog as much as possible! The moment of truth is on it's way, so thank you to everyone for the prayers, good lucks, and birthday wishes! I love you all, and I'll update as much as I can!

Mira's sign for her incubator!

Trying To Prepare Myself

I'm working on telling loved ones why I don't want a bunch of people there while we're delivering Mira. I don't mind if they show up later to go see Joe and Mira at children's hospital, and I'm sure Joe wouldn't mind a little bit of support and company over there. However, the delivery process will go something like this: They will allow Joe in the operating room while we deliver Mira by c-section. As soon as she's born, I'll get a glimpse of her, and then Joe and Mira will be taken up to the NICU to wrap her back and stabilize her to get her ready for transportation over to children's hospital. They'll call children's hospital to come and get her while my surgery is being finished, and then I'll be taken to recovery. I may or may not get to see her again before she leaves, and I'll have wait in recovery by myself. My sister, Tammy, will be reunited with me once they take me to my room. Throughout that time I'll be trying to pump as much as possible and I'll be coping with the struggle of having to let my newborn baby go because it's what is best for her. I'm quite certain that I'll be a devastated wreck, and not really up for entertaining guests. I won't have it in me to put a fake smile on my face, so I think it's probably best that I'm not getting flooded with visitors that day. I'm very grateful that I have loved ones who would want to come see me, I just think it would be best to limit the encounters during such a difficult and emotional time.
I am happy that some of Joe's family members will be going to children's hospital with him and Mira. I'll have Tammy for support, so I'm glad that Joe will have support there for him, too! And the more people supporting Mira, no matter where they're located, the better! The time where I have to let her go has been the part I've been intentionally avoiding in my head for a while now. But now, I need to let myself prepare for it so I can be ready to do what needs done. And boy, oh boy, there is a lot that needs done, and just about a week to do it.
Not just the emotional and mental preparation, but all the tasks. We've been told to estimate a month long stay; could be longer, could be shorter. So for now, I need to get Dustin and Aryanna packed and ready to stay at family members' homes for a months time. I need to pack for Joe and I to stay at the hospitals for a month. I need to have the house ready for Mira's arrival at home before we leave, as well. We need to assemble her crib and baby furniture. We need to have all of her clothes washed and ready. We need to have our bedroom set up to accommodate a newborn again. We need to make sure the house is as clean as possible so we're bringing her home to the most sterile environment we can while she's healing. There is certainly A LOT to do! I still can't believe all of this is right around the corner! I can't believe all of this preparation and research and learning I've been doing for months is all about to be for a reason! I mostly just can't wait to meet her!
I hate that I'm going to have to let her go, but I can't wait to see her, even if it's only for a few seconds before she leaves. I just can't wait to hear her cry, and see her breathing, and look at the contours of her face, and the wrinkles on her toes, and see how much hair she has (even though they have to shave it off for her surgery), how long her fingers are, and does she really have Dustin's nose and Aryanna's lips like it looks in her sonogram photos?!?! I just can't wait for that part! I'll have to tell Joe to take lots of pictures before they shave her head.
I'm not trying to market products to anyone, but this is where having iPhones and iPads come in handy. I'll get to FaceTime with Joe while we're separated so I can watch Mira every possible second! I'll also get to FaceTime with Dustin and Aryanna while we are away. I'm going to miss them so much! Oh how technology can make things just a little easier! We will definitely need to remember to bring our chargers! And back up chargers for our back ups! Technology only helps if you don't have a dead battery.
So even if I only get to see her in person for moments, at least I'll get to watch her and talk to her through our devices. She'll be able to hear my voice until I can go be with her, and I'll get to watch her as if she's right in front of me! I can't even think about any of this without crying, it's going to be the most emotional time of my life in so many different ways! But I can't wait!

Latest OB Appointment/Baby Registry

     I have informed you all that Mira will be born on April 17th. I will actually be about 38 1/2 weeks along at this point instead of the originally planned 37 weeks. In our most recent OB appointment, the OB's, my sister, and myself decided that since Mira is being born in a completely normal window of time, the amniocentesis is no longer necessary. The date of her delivery had to be pushed back because of insurance time frames and scheduling conflicts between my OB's and Mira's surgeons. Now that we will be carrying her longer, the odds of her lungs not being fully developed is less than 2%. With over 98% odds that her lungs will be just fine, I am perfectly okay with avoiding the potential risks that something could go wrong during the amniocentesis. The less trauma that is inflicted on her, the better; so I am more than happy to avoid this now. She will be facing enough already after she is born... no need to make her face anything else before she even comes out of her personal bubble!
     To do something fun after the OB appointment, Tammy and I went to the nearest Babies 'R' Us and created a registry! This is the first time I actually went to a store, and used that nifty little gun to create a baby registry for one of my children. We had so much fun looking at all the cute little outfits and picking out things that would be beneficial to have for her! Some of the items are things we definitely need/want and intend on getting, and some of the items are things that were just for fun that would be nice to have, but definitely are not necessary. This is our registry, if anyone is interested in taking a look: Babies"R"Us - Baby Registry. 
     One of the purchases that Joe and I agreed we will definitely be making is a video baby monitor when the time comes for her to sleep in her own room. We are already assembling her nursery set in our room, but we would feel more comfortable to actually be able to see her once she is no longer within our immediate sight. We have already been informed by her surgeon that we will constantly be keeping an eye out for different sets of neurological symptoms due to her hydrocephalus, chiari malformation, and shunt. Each of these brings on different types of neurological symptoms if something is wrong, so having a constant visual of her will definitely give me some peace of mind.
     With all of the planning, and how much fun I had doing her registry, I am getting so excited about her arrival! I am still very upset about being separated from her, and I am dreading the moment that I have to let her leave my side and go to a different hospital and go into surgery; but I am excited about the AFTER part. The part where I get to hold her, and bring her home, and introduce her to her big brother and sister! I can't wait to see all of my children together in our home, with my family intact and together! It will be so hard to be separated from my children for so long, but I am trying to focus on the after. After her surgeries are over, after my children can come home from various family members homes', after Joe and I can bring Mira home and she'll feel like OUR baby, not the hospital's, after the emotional roller coasters! After all of that is over, when things become "normal"... I just can't wait. Who knew that perfectly "normal" could be such an exciting thing!