Life in the NICU

I am officially at the end of my rope. I'm hanging from the bottom, and I'm starting to get creative...looking around for anything and everything to grab a hold of, to keep me dangling just a little bit longer.

Charlotte is 36 weeks, today. Doctors have told us - on several occasions - that they have very high hopes of her going home in the 36th week. Normally, I'd say, "Let the countdown begin," but I feel like I have been drained of any optimism or hope. As we settle into our routine of going to the hospital on a daily basis, things are beginning to feel like they will never change. Will my daughter spend her 16th birthday in the NICU? Lol, sometimes it feels that way.

All we are waiting on right now is for Charlotte to eat - every feeding - her entire bottle for 48 hours straight (so, no use of the feeding tube). Her patterns of doing so are all over the place, and yet they are consistent. For example, last night she ate her entire bottle at 11pm, nippled 30mL at 2am, ate her entire bottle at 5am, nippled 24mL for me at 8am, and then ate her entire bottle for me at 11am. So she's batting .500, it seems. But we can't guarantee which bottles she will eat, and which ones she won't.

My frustration comes with the fact that every time we look close to getting there, we have a "set back." The first set back was a nurse declaring that Charlotte is too aggressive when she eats, and needed a preemie nipple to slow the flow of milk. That's fine - but she has to work a bit harder. Which means she tires out a bit faster.

The second set back came today, when I was told that an occupational therapist had been called to evaluate Charlotte's eating habits. I suppose this isn't really a "set back," per se, it's just frustrating. Doctors are concerned with the voracity at which she eats and they want to teach her to pace herself...but how long will this take? Are we looking at an extra week in the NICU while we "work" with her?

I will admit, Tom and I have started to dread feeding times ("care times," as they call it at the hospital -- every three hours she gets a diaper change, her blood pressure checked, her temperature checked, and the nurses listen to her heart/lungs and feel her belly). They are incredibly scary for two parents who have never been to medical school. Every newborn must know how to suck/swallow/breathe when eating. Charlotte's problem is that she does this: suck/swallow/suck/swallow/suck/swallow/suck/swallow/suck/swallow...turn purple and scare the shit out of mom and dad...breathe. Sometimes it takes her 2 seconds to breathe...other times it takes her 30 seconds.

We are learning not to panic when this happens. In fact, when the alarms go off because she is no longer breathing, the nurses just kind of glance in our general direction and continue doing what they're doing.

So yes, she definitely needs some sort of help (or maturity - this could very well be a product of her small size and young gestational age). I don't argue that at all. I just wish she didn't. I wish she could catch on and just come home already.

I'm tired.

I'm tired of having my baby in the NICU. I'm tired of working around tubes and wires every time I pick her up. I'm tired of taking her temperature every 3 hours. I'm tired of wondering what my child looks like without an orange fucking tube sticking out of her nose. I'm tired of missing out on things like her first bath, the day her belly button cord fell off, etc.

I'm tired of having to explain to my 4-year-old, "No buddy, mommy can't hang out with you right now. I have to go to the hospital."

I'm tired of having to sign in and go through several barriers of security to see my own daughter. I'm tired of having to wash my hands to my elbows every 14 seconds.

I'm tired of people asking me when she will be coming home.

Charlotte is a perfectly healthy little girl. She just needs to learn to eat properly. And because of that, I am tired of her spending her days in a plastic tub on a rolling cart when she isn't spending it in Tom's arms or mine.

I am tired of people demanding my attention, as if I have any time to give them. I have always been a good friend. I will be there for you when you need me. I will listen to what you have to say, or give you my shoulder to cry on. But right now? Right now I have a fucking baby in the NICU and when I'm not with her, I am with my other child. He needs my love and attention, too. For once, I can't be a good friend. I'm tired of people not understanding that.

I am tired of people who expect me to send them updates all the time, without them asking. Please forgive me if I am not thinking of you or your needs at this time. And I am tired of those same people giving me the silent treatment as if I should be punished, because I am being so "selfish."

And yes, there are people out there right now who are trying to make me feel as if I am selfish. As if devoting myself to my children 24 hours a day, 7 days a week, is some sort of sin. It's amazing what you learn about friends and family in a time like this.

I am tired of attaching myself to a machine every 3 hours to pump breast milk. This was not exactly what I had in mind when I learned I was pregnant and swore I'd dedicate myself to breastfeeding once my child was born.

I am tired of saying, "See you tomorrow," to my own daughter, just 3 weeks old.

I am really fucking tired of everything.

Thankfully, at this time, we have some really phenomenal people who have surrounded Tom, Thad, and me and truly embraced us. I have learned that it is better to say, "Thank you," than, "No thank you," at times like these. I don't typically allow others to help me, even when I am desperately in need. But I've learned to let them now. I didn't want to accept all the meals that people we didn't even know were delivering to our doorstep...but wow did those meals come in handy. I am so thankful for those people.

A woman I have never met made Charlotte a quilt.

Another woman I have never met owns a local bakery - she made a special frosting just for me, and had 6 cupcakes delivered to my home.

The mother of a good friend of mine has taken me under her wing and essentially made me feel like I was her own daughter. She has come to see Charlotte in the NICU, she had Tom and I over for dinner last weekend, she has made us meals, and she most recently has made an incredibly generous offer to help us get out to New Mexico in a couple weeks.

People like the ones I have mentioned are the ones who are helping me to successfully dangle from this rope, even when I feel like I could lose my grip at any moment. I'm so thankful for these people in our lives.

These people make me feel like I can push just a little further and hold on just a little longer. If you are reading this, and you are one of those people, thank you.

Happy 1-week, baby girl!

Well, technically she's 8 days old in this photo...but I've never really been a stickler for minor details.

Charlotte celebrated her first whole week of life by gaining just enough weight to be admitted into the "Four Pound Club." She's getting huge, I tell ya. ;)

She is also continuing to practice the suck/swallow/breathe technique, and a couple times a day she will stay awake just long enough to take about 15mL of breast milk from a bottle. Again, the doctor has been pretty impressed with this since most babies don't even begin to show interest in feeding for themselves until 34 weeks (Charlotte is only 33). He even labeled her "advanced," which gives me renewed hope that she is going to bust out of the NICU far earlier than most textbooks suggest.

Home girl loves to poop. I swear it's her favorite thing to do. Well, not that it's her favorite thing to do - but I think she gets secret joy when Tom or I change her diaper because she always - ALWAYS - poops again immediately after, or in the middle of the change. Yesterday, I witnessed poop fly across the incubator right before I was about to secure her new diaper.


Tom calls her his little scrappy girl, or scrappy doo.

I still call her my favorite little kangaroo.

To mark her first week, I took a camera to the NICU and got some photos of her sleeping, hanging out, being measured, etc.

These were some of my favorites. :)

The past few nights I have found myself at the hospital well past midnight, and it's really wearing me out. Obviously I am exhausted, but emotionally it has been draining simply because I haven't had the chance to spend hardly any time with Thaddeus at all. I am really anxious to start dividing my attention between my children when we're all in the same room together, lol. Until then, Tom has already left to visit with Charlotte for the morning, so Thad and I are going to have a "Mommy and Me" day until I head up there in the late afternoon.

Maybe we'll go see a movie and do lunch.

Either way, I'm anxious to spend time with my favorite little man.

A great day.

Baby Charlotte had a fantastic day today.

They have officially upped her milk intake to 35mL per feeding, and she is showing no signs of having any digestion problems or spitting up too frequently. In other words...she likes mama's milk. ;)

The only challenge that her current intake poses is the fact that, 6 days after delivery, I am only producing between 40mL and 60mL of breast milk each time I pump. I am pumping every three hours around the clock, keeping on her schedule, but it pretty much leaves no room for "I'm too busy to pump," or, "3am? Really? I'd rather sleep." Lol.

In fact, as I write this, Tom is making a midnight run to the hospital with about 3 bottles of breast milk just to stay ahead of the game.

Have I mentioned how absolutely phenomenal and supportive my husband is? Not only does he hang out with me during each pumping session, but he loves on me during the random moments throughout the day when my hormonally over-driven self starts to cry for no reason. Lol.

Anyways, back to the baby.

Aside from upping her milk, they also removed her IV today. This is huge. Not that it's necessarily a milestone (it is), but she no longer has a big ol' fucking needle sticking out of her hand. Every time I see that thing it makes me cringe, so to know now that both of her hands are free and clear - it makes me so happy.

Because she is no longer baking under the lights for jaundice, we have been able to do more skin-to-skin time. Tom took the morning shift, and I went for the afternoon/evening.

I have to say, watching Tom do skin-to-skin with Charlotte is what has already led me to nickname her my little kangaroo. He tucks her into his polo shirt, and all you can see are her little eyes and lips popping out the top. It's so damn adorable, I can't even begin to describe it. And I'd take a picture of it, but they might take his Man Card. So you'll just have to use your imagination.

It's so weird - there is something about being in the NICU, under very dim lights, with the hum of the machines - even in my most awake state, the second they place that baby on my chest, I am out. She and I just lay there together, often just sleeping with our noses touching (I used to do this with Thad as well). I take advantage of the times when her eyes are open, though - singing to her (poor girl), reading her books, laughing at the fact that she is totally incapable of seeing straight and always has her eyes crossed. She was doing an awful lot of fist pumping today - clearly she was excited about the great day she had.

The final victory of the day was the fact that she drank 15mL of milk from a bottle. Like I mentioned earlier, the suck/swallow technique doesn't typically occur in babies earlier than 34 weeks. So she's a little shy of being of age for this kind of thing - to take half of her feeding with the bottle was a huge deal. Remember - 48 hours straight of bottle and/or breast feeding, coupled with a few other things, and this little girl will be able to go home.

So we will definitely continue to work on this one!

With all of the fuss about a brand new baby, it has started to feel like Thaddeus is being set aside. That has been one of the most emotionally difficult things about this whole process of having a baby in the NICU - not only is my time divided, but it's divided in such a way that I'm not even home.

Two days ago, Tom called me at the hospital to let me know that Thad had taken his training wheels off his bike and was officially riding around the neighborhood like a big boy. All he kept asking Tom was, "Will mommy be home in time to see me ride my bike?" Of course I was. And we took him out that night for his Big Brother dinner to celebrate. But it was still hard to miss that milestone in his life.

Yesterday, he took his first huge fall off the bike since the training wheels came off. Now, Thad rarely cries out of pain...or really, ever. But according to Tom, he was beside himself. And of course, I wasn't here to console him. Tom said he kept saying, "I want my mommy!" over and over. Ugh. My heart aches over little things like this.

Even though I am having a hard time balancing Thad, Charlotte, pumping, school, and even photo sessions (yes, I am already working again, lol), I am thankful to have such a wonderful support system. My friend Danielle has been incredibly helpful; our neighbor, Jodie, is a God-send; and we have several friends who have brought meals to us or volunteered to help with babysitting. I am so thankful to everyone who has reached out to us, aiding in this process.

Tomorrow, I'll post some photos. Maybe they'll be of Thad on two wheels...he's pretty damn proud. And so am I. ;)

Charlotte Rae

Remember the last time I posted, how I ended with the thought that I did not know if I would be able to physically or emotionally endure another seven weeks of pregnancy?

It turns out I was right. My body was ready to give out.

On Tuesday, July 3, I went in for a routine check-up of the baby.

I had gained 16 pounds, but I hadn't been eating.

My blood pressure was also teetering in the "you should be having seizures" zone.

Right away, my doctor knew I had pre-eclampsia.

The thing about pre-e is that many women who catch it in time can be on bed rest and monitor themselves, with the hopes that their baby will cook a little longer. But there is no "cure" for it, other than to have the baby. I was admitted to the hospital right away, with the *hope* that I could let her stay inside awhile, and give her some more time to really fully develop.

My doctor started me on a regiment of magnesium and oral blood pressure medication. When my numbers wouldn't go down, they decided to induce labor.

Again, we tried for the most "natural" route as possible, hoping my cervix would dilate and I could have a vaginal delivery. The problem with this was that the baby's heart rate was dipping just low enough to make the doctors uncomfortable. My high risk OB figured that between my Wegener's, and the pre-eclampsia, it was best to get the baby out.

So, they took her via c-section.

I won't lie. The c-section was miserable. They had to do a lot of pushing and prodding on my upper body - where the spinal didn't exactly reach. So there were moments on the table where I was literally crying, "Get her out of me!" and there were other times where I would just pass out and start snoring. Lol.

According to Tom, the doctors were having a hay day with that one.

Charlotte Rae was eventually born on Wednesday, July 4, at 1:50pm.

She was 17 inches long, weighing in at a whopping 3 pounds, 15 ounces. A total bruiser. ;)

Being born at 32 weeks presents certain complications for any baby. Charlotte is currently taking up residency in the NICU at the Children's Hospital which totally sucks...but she's in good hands. She has battled a little bit of jaundice, so she has spent two days under the lights, but her numbers have been fairly low and not of any concern.

Her glucose is great, and each day they increase her feedings. She is officially taking in 28mL of milk with each feeding, every 3 hours. And, I am happy to report, she is no longer being supplemented with formula since my milk has started to come in. That has been the greatest relief--having a baby in the NICU makes it that much more important to you when you want to breastfeed to be able to do so. I can't explain it.

Aside from the days when she has had to bake under the lights, we have started skin-to-skin time. We lay on a recliner with her, exposed to our chests, with a blanket and we just chill out. This is, by far, my favorite times with her. For the most part, she sleeps, but every now and then - right before feeding time - she wakes up and looks around. Her response to mine and Tom's voice is heart-melting, and while we always start with her on my chest, she has always moved up to nuzzle right into my neck by the time we are done.

I am so in love with this little girl.

There are three things that Charlotte has to do before they will discharge her from the hospital.

(1) She has to go a full 48 hours without the feeding tube, eating from either a bottle or the boob. This will most likely be our greatest hurdle in getting her home, since most babies don't begin to even flirt with the idea of suckling until at least 34 weeks. Yesterday, she was 33.

(2) She has to regulate her own body temperature. In the NICU, they call this "pop the top" - meaning, they can take the top of her incubator off and allow her to breathe in the fresh air. She has to be a certain weight before they will try this and she is literally only fractions of a gram away. I wouldn't be surprised if this happens within a day or two.

(3) She has to gain weight. It's common for brand new babies - premature or not - to lose weight during their first week in the hospital, so this isn't all too concerning. She is down a couple ounces, but we expect that to start rebounding soon.

Overall, she is absolutely perfect. The doctors have even described her as being "very healthy," which gives me great hope and relief. At this point, no one sees any reason why she should be battling any kind of developmental disabilities because of her prematurity. She's just a little small and needs some help to grow. ;)

As you can see from the photo, she looks a lot like Tom and Thad. But I think she looks a little like me, too. ;)  Her hair is dark, and there is a little curl on the side. She has total monkey toes - just like her brother. She is constantly pulling at her cords and IV with her feet, lol.

I will try to get some more pictures as time goes on. I obviously want to document her stay in the NICU, but it's a fine balance between wanting to do that and feeling really weird taking photos of my child hooked up to a bunch of monitors.

In the meantime, Tom and I are sharing our time between being home and being with her. Yesterday, I spent the entire day at the hospital while Tom stayed at home - he felt like he was maybe battling a cold and didn't want to be near her. Feeling better today, he has already headed to the hospital while I stay home with Thad. When he gets home later this afternoon, I will take off to spend the evening with her.

The most difficult thing thus far, aside from her being in the NICU, is having to balance life with a 5-year-old while also wanting to spend every waking moment with Charlotte. While the nurses in the NICU are wonderful, they aren't caretakers. They don't get paid to sit there with the babies, and hold them, and give them the love that they need. So every moment away tugs at my heart, as I realize she is getting almost no interaction or stimulation, aside from the occasional diaper change. There are some babies in the NICU whose parents I have never even seen - it breaks my heart for them, wondering what life situations could be keeping their parents away.

Thank you again for the constant good thoughts and prayers. Tom, Thad and I have felt every single one of them. It's pretty obvious how well-loved this little girl is - for her to be doing so well, so early, is pretty indicative of the amount of prayer and support she has behind her. I am so grateful for all of our family and friends.

I will continue to use my blahg to update on how Charlotte is doing. Hopefully, soon enough, I will be writing a, "She's coming home!" post.