From Dimmers to Broadway Spectacle

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Written November 7, 2012 7:17am

Ellen is coming home! Today!!!! I can’t believe it. We’ve been in a bit of a flurry getting ready for her homecoming, but we couldn’t be more ready for it.

On Sunday we noticed that the “light bulb” was starting to turn on. I was, of course, ridiculously excited. Dr. Winslow and Mike made sure to let me know that it wasn’t on completely – she was on a dimmer. I just shook my head at the two men trying to curb my enthusiasm (although I completely understand where they were coming from). On Monday she was doing even better and Dr. Winslow said she was on her way to coming home. And yesterday he gave me the go ahead to room in and take her home today if everything went well. The light was officially on like she was staring in a Broadway production. She is eating like a champion.

Ellen and I spent the night together (Mike got his one last full night of sleep) and it went splendidly. There will be a learning curve for figuring out what she needs when, but I feel pretty confidant about figuring it out eventually.

All of this being said, it’s funny how your perspective changes when your child starts to get big (again, a very relative term). Mike and I are constantly amazed at how big she looks compared to where she was. However, she is still stinkin small. The picture here is of Ellen in a newborn outfit. That’s right. Newborn. That’s a really small size. It swallows her. I love how ridiculous it looks. It’s hard to believe that she will eventually fit into clothes this size.

ClothesTooBig

On another note, people have been absolutely wonderful to us. We are single handedly keeping the post office and UPS man in business. Just recently we received a box full of books – all of them amazing, – and yesterday some of Mike’s law school friends sent us Giordano’s pizza. I can’t even explain how excited I was. Not only could I not have carbs when I was pregnant (gestational diabetes is rough) but we both often lament the lack of good deep dish pizza in GR. It was such a wonderful surprise!

Things I Love About Ellen

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Written November 4, 2012 6:09am

People ask us all the time how are we doing. I love that question. It means people care. It is such a great feeling to know that people care. I usually answer with “Given the circumstances, I’m doing pretty well.” This is either followed up by a few deep breaths to swallow up the tears or a quick and pithy explanation on how she is doing and how fortunate we are.

I think a better response to this question is that there are moments when I am doing okay and there are moments when I am not doing okay. Yesterday there were more moments where I was not okay than usual. It was a hard day. Everything is absolutely fine with Ellen – she even gained weight! –  but Mike and I would really like to have our daughter home.

So instead of talking about the monotony of the NICU or giving the daily stats on Ellen (which haven’t changed), I’m going to start a list of things that I already love about Ellen.

1. I can already she her dad in her.

This is special. Now I know that she is crazy little and not fully developed (hence the NICU) but there are times when I see her personality come through. Nature can be powerful. Every now and then she has the exact same sleep positions as her dad. It’s fun to look down at her and see that similarity. This picture is just one example of how she stretches and repositions herself into something more comfortable. It is not uncommon for me to wake up next Mike and see him in the exact same position.

I love that.

TiredEllen

Fat Babies and Kangaroos

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Written November 2, 2012 11:21am

Generally in our society the word “fat” has negative connotations. It is difficult to come up with ways the adjective fat can be used positively. Maybe a fat check – that would be a good thing – but I’m struggling to find other ways to make that word sound good. However, in the NICU, probably one of the highest compliments you can get is “Wow! You have a fat baby!”. It’s right up there with “Your baby looks stylin’  in those jaundice sunglasses” and “I’ve never seen such rhythmic breathing on a preemie before”. Ok – so compliments are strange in the NICU.

Well, Ellen’s neighbor is a fat baby. Yes. I am jealous. She also eats more than I do (Ok – not really, but the amount of crying she does for food rivals adults – not that most adults cry for food – but you get what I mean). Yes. I am jealous of her appetite. I am jealous that she is fussy. Clearly, I am jealous about many strange things that I must confess for. Luckily, she is being discharged…or at least I thought.

She was supposed to go home yesterday but because of various reasons, she and her screams and her appetite were still right next to Ellen this morning. It’s hard to start the morning next to a screaming baby with extra adipose tissue. It really doesn’t seem to bother Ellen that much because she is so tired that she just sleeps through it. (She also doesn’t seem to be bothered the obvious size difference.) It really doesn’t seem to affect any of the other babies either. It does affect the adults. Hopefully all will go well with her discharge situation and she can go home with her family soon. ASAP soon would be nice. Here’s hoping. I don’t think my jealousy or my nerves can handle much more. 🙂

Even amid screams, I got to enjoy one of my most favorite parts of my routine. Kangaroo-ing! Nurse Nancy (who I absolutely adore) first introduced me to kangaroo-ing a few days ago. Essentially you undress the baby and put them up your shirt with their head coming out of the neck-hole with yours. This skin to skin contact is supposed to be very good for babies’ neurological development – and goodness knows that I am going to do anything to help any sort of development.
Kangarooing
The one downfall of kangaroo-ing is that you keep stretching out your shirts. But I look at it this way – a shirt costs $15 (at least the ones I’m wearing right now) and this time is priceless. I love it. It might be my favorite time of the day. I can always dry the shirts on high, right?

Right now Ellen is still gaining weight – she hit her birth weight today! Her A’s and B’s are going down, which is great, but she is still struggling with eating. Most times she needs to be tube fed at least part of the meal. We aren’t even thinking about her coming home until she doesn’t need the tube anymore. You would think she would work harder to get the tube out of her nose (especially when she continues to pull it out herself) but apparently she is quite content to keep going the way she is. The NICU staff keeps telling me that one day it will be like a light bulb switched on and she will amaze us with her eating. Until then, we’ll just keep hoping that the light bulb turns on sooner rather than later.

Routines

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Written October 31, 2012 11:17am

I have a routine.

For those of you who know me well, you know that I do well when there is a schedule. I like order. Not that I can’t handle chaos – I work with 15 and 16 year old’s everyday so that is part of the job description – but I like there to be a purpose to abandoning my routine. Can you tell that I’m a type A personality?

Well, I love my schedule that I have created now. It is my one sense of control in life that has given me lots of shocks in the past few weeks. I start the day at 5:30 and pump, shower, feed the dog, eat breakfast watching the morning news, get ready, and pull everything together to go to the NICU.

This is not a complicated schedule. It’s pretty simple. It actually looks very similar to my schedule before Ellen. I’m a creature of habit.

So this morning when Mike asked if I could wake him up after I pump so he could take a shower, I might of had a bit of a personal crisis….

Mentally I know that this shake up to the routine is really not a big deal. And I know that Mike has been wonderful and is working hard to support me and take care of things at work. While it’s not a lot – those extra fifteen minutes of extra sleep are really nice for him.

However, emotionally I did not fare so well today. As much as I tried to convince myself that it really is not a big deal (I’m mean really – eating breakfast before my shower is not an earth shattering change), this small change started a downward spiral that I could not control.

Luckily, Mike is wonderful and could tell that this change was not okay with me as much as I wanted it to be okay. He gladly took his shower after my shower. What a guy, huh? 🙂

All of this is to say that not having Ellen at home is hard. And it gets harder every day. As much as I want to be level headed and strong, there are moments every day that it hits in just how hard it is to be a mom and not have your child with you all the time. It’s hard to figure out what a “good” mom looks like in this situation. I want to be with her all the time, but it is hard to spend that much time in the NICU. It’s hard to watch Ellen’s neighbors change everyday because they get to go home. It’s hard to watch other babies struggle with more severe issues than Ellen. The range of grief and gratitude on a daily basis can be exhausting.

But life continues on. And once I get a bit more perspective and am allowed to be a bit emotional, I pull myself together and keep going with my routine.

Ellen’s routine is pretty strict as well. Every three hours she gets her vitals checked, diaper changed and fed. Every other time she is either tube fed of breast/bottle fed.

This morning routine went fantastic – which was exactly what I needed. She did great feeding! I think she probably could have even had a little bit more than she did. She is continuing to gain weight and get cranky before feedings. This is a good sign. It means that she wants to eat and will actually wake up for it. Who would ever think that I would be grateful for a fussy baby? (And as I write those words, I do realize those could be words I choke on later – but there are times of happiness and times of fussiness if I can channel Dickens.)

That’s all for now. I know there was more about me than about Ellen, but I guess that is the way it goes sometimes.

Ellen’s First Week

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Written October 30, 2012 2:58pm

Ellen has been in the NICU for the past week. It has been a week of highs and lows and everything in between. The first concern for Ellen was her breathing. She was breathing on her own, but her respiratory rate was too high. She was able to resolve this within a day. However, by Thursday we knew that she was not keeping herself warm enough and that jaundice was a problem. She was put into an isolet (looks like an incubator) and under a photo therapy light to take care of both of the issues. By Sunday she was able to get rid of both and stay in an open air bassinet!

Currently her biggest issue is feeding. She is on an eating schedule of every three hours, but she is tube fed every other feeding because she doesn’t have the energy to bottle or breast feed every time. She is gaining weight slowly but surely, but we need to get her feeding on her own before we can think about taking her home.

In addition to feeding, she still has some episodes of apnea and brady events (she stops breathing or her heart stops beating). It’s pretty scary when that happens (especially when it happens during a feeding), but she is able to self resolve it. Dr. Winslow and the NICU nurses (possibly my favorite people in the world right now) all say that this is normal for a preemie and will pass. In order for her to come home, she needs to go 24 hours without an event.

Right now those are the basics. I figured I would just do a general catch up. As for Mike and me, we are doing pretty good. Mike has been fantastic throughout the entire process. I can’t imagine having to do this with anyone else. It is an emotional time for us, but the honest truth is that right now we don’t know any better than what we are experiencing right now. We are both very aware that we can’t give her the care that she needs right now, and until we can we want her to be where she gets everything she needs. It’s still hard, but I guess that the first lesson of being a parent is that it is no longer about you but what is best for your child. Her welfare is the only thing that matters right now. So we carry on and roll with whatever comes our way.

The other thing that you learn when you are a NICU parent (we actually have badges that say that to let us in the NICU) is that it could be much worse. As far as preemies go, she is doing fantastic. That is highlighted to us every day as we see what other issues she could have and are extremely thankful that she could stay in the womb for 34 weeks and not have major complications. We are so thankful for how she is doing and that she is in such capable hands. The NICU staff is amazing. We love them.

Ok – that is it for now. I’m not always fantastic at updating posts, but I will try to keep everyone in the know. We have been blown away by the love and support from everyone. We have pretty amazing friends and family.