Tuesday, February 26, 2013

I cried.

Not long after I published my post yesterday, I asked if I could speak with the doctor. I knew Dylan had done well during the last 24 hours and I wanted to hear her thoughts.

So she walks in and says, "So Dylan's going home on Wednesday." Like I already knew this. I said "really?" She said "yep!"

And then she left.

And then I just started crying (damn...I'm doing it again).

I didn't think I cried happy tears but it looks like I do.

I just never thought this day would come.

I feel like we can finally start our lives as a family now.

When we're home, no one will be able to tell all of the things we've been through over the past 2 1/2 years. We will look like all the normal people. But we will be different. I'm not sure how that difference plays out in the real world, but it'll be there.

(Dylan just snorted and woke himself up...: ). He's napping on my chest while I blog on my phone.)

I feel myself physically unwinding. I definitely have some symptoms of post-traumatic stress. Seeing the little babies makes me weepy...even though I could handle seeing Dylan without crying. We watched a CPR video today that has actors play out scenarios with real babies. It was almost too painful to watch.

I rarely get sick, but after finals my 1st and 2nd years of college, I got a nasty flu. I can hold it together until the crisis passes and then my body finally deals with all of the stress. I wonder how it will manifest after this?

We are telling all visitors that they have to wait at least a week to come visit. I want to be in a cocoon and just be a family. And take newborn pics! (They're already scheduled for Friday.)

Sharing this experience with all of you and feeling your support and making connections with other preemie parents has really helped me to survive.

Excuse me while I go cry a bit more...

Monday, February 25, 2013


Now that it looks like Dylan is coming home this week...without the g-tube (yay!), I am starting to freak out.

I equate it to how the normal pregnant people feel as they approach their due date. I am going to have my baby at home!

What will it be like? How will Stella do with him? Will he sleep? Will he eat? Will I sleep? How will I do with no sleep? What will we do each day?

I really have no idea what it will be like.

Unlike most moms, I do already "know" my baby. I know his cues and his faces. I know what his schedule has been here on the NICU, but who knows what things will be like at home?

I'm so anxiously excited.

I want to nest and get things ready, but I'm spending most of my time with him, not at home.

It's so amazing and kind of hard to wrap my head around!

But I'm ready...

Friday, February 22, 2013

Maybe, Just Maybe

Let's get back to our regularly scheduled posting...

Dylan just took 95mls of Enfamil AR formula!

Now the irony is not lost upon me that I am pumping as I type this while he chugs away on formula, but if it's the answer, I'll take it!

His previous record was 70mls of breast milk set last night. He beat it by almost an ounce!  His 3 hour minimum is 67 and 4 hour minimum is 88.  I do think be could potentially do the same with breast milk, but the AR is thicker which prevents bradys so I am perfectly happy with trying it for now. I will probably try to go back to breast milk after we get home.

The key was letting him "sleep eat" over about an hour. Both times he took. 30-40 immediately, then pooped out and fell asleep. When I heard him smacking his lips, I laid him on his side and kept going.  It totally worked and didn't seem to use too much energy.

My nurse almost cried. (She's my favorite...she treats Dylan like he's her own son.) when I told some other nurses at the station they cheered out loud, one raising her hands in the air :).

Surgery is still set for Wednesday just in case but maybe, just maybe...

Thursday, February 21, 2013

No. I Refuse.

I did not retaliate when I got nasty comments about my decisions last summer. I knew that some people would not agree. But I will absolutely not sit back while anyone tries to judge the time, effort and love I have given my son during the past five grueling months in the NICU.

I have written dozens of positive upbeat posts about what is going on andmaybe two that have shown my cracks emotionally. You call that whining? I'm sorry that I was worried about how Dylan would do without his feeding tube when the last attempt was a total failure.

When I walk in the door of the NICU each morning, I greet everyone by name. Because I know every single person's name: receptionists, respiratory techs, doctors, nurses...even the janitor. I know all about his 3 kids. Today is his daughter's 21st birthday.

They have been part of our family for nearly half a year.

Out of the nearly hundred nurses that have taken care of my son over the past 5 months, there are 3 that I do not like because of either their nursing ability or manner in dealing with me and/or Dylan. Most of the nurses are great and there are even a few that love Dylan almost as mich as I do.

The nurse I had yesterday had Dylan one time before. She's rude and I think she hates her job. Very sad for a NICU nurse. I was really upset to have her on a day when I needed extra support. But instead of ignoring her or sulking, I tried to engage her in conversation all day...talk about her dogs, her family...because she was my son's nurse and I wanted her to treat him well.

One comment said that I need to advocate for Dylan. I do nothing but advocate for him every minute of every day. I've spoken to every level of administrator from charge nurse up to make sure Dylan gets the best care possible and that includes nurses who know him. I ask every single person that steps in our door if they have any ideas for helping him eat. I do my own research then ask the doctors what they think about what I find.

When the OT was in our room about 6 weeks ago and as we were talking about what to try next for feedings, I asked if we could graph the amount he has been taking over time. How can we truly understand his patterns without seeing a graph? Apparently no one had ever tried this before and so the nurse and the OT spent the next half an hour trying to figure it out in the computer system. It worked and provided us invaluable information.

It caused us to make a feeding binder for Dylan to document each different variable at each feeding (beyond what is charted normally). The binder has helped us to figure out the connection between his bowels and feedings as well as which nipple/bottle combo works best and has helped every to really focus on feeding when they have Dylan. I say us because I am absolutely a part of the team that is figuring it out and offering suggestions.

I spend all of my waking hours thinking about how to help my son.

When I am not at the NICU, I'm typically pumping, eating, sleeping, taking care of the dog, or doing Dylan's laundry. That's in addition the the two hours I spend driving to and from the NICU two times each day. There is not time for much else and sleeping in the NICU would make me ill-prepared to deal with each day's challenges. I would absolutely prefer to do all of his feedings, but he has loving professionals that share the duty and I am grateful for them.

And you can't compare this to staying up with a child at home. You are at home. When your child sleeps, you can shower or do something productive around the house...or sleep. I can't do those things in the NICU. And it's not like there is a bed...it's a pull-out chair. It's not realistic to sleep in that environment for 5 months so I do it when it really matters, like last night.

My entire life revolves around my son. My husband and I cover almost every single feeding from 9 am to 11pm. So go ahead and disagree with my reduction, but find someone else to criticize for not taking the very best care of her son possible.

Wednesday, February 20, 2013

Thinking out loud.

I hope that one of the most helpful things about this blog is that you get to watch me go through things that you might have to go through.

So today, I'm literally going to think out loud in a post (that I'm typing with one hand on my phone).

I'm having a very stressful day and I need a release.

It starts with the dog. She cannot stand to be confined and we can't stand to see her going insane. Yesterday when I got home, she broke out of her crate and was upstairs sleeping on our bed. Long story short, the bandage was irritating her foot (from occasionally putting weight on it) and the vet reiterated that we MUST crate her.

I can't handle it so I told dh that he is on dog duty -I don't want to make any decisions.

Because she needs to stay in the crate, my mom is not going to spend the day unpacking stuff from the house tenting which really needs to be done.

But that's just the peripheral stuff. We decided yesterday that we will take out Dylan's tube again today and that I will stay and do all of his feeds for 24 hours.

I need to devote all of my energy to solving his problems right now. Not the other stuff.

Lisa at Hapa Hopes posting a great article about preemie feeding on my last post. I read it before getting out of bed this morning and it set my mind racing.

First, I see all of the signs of feeding aversion in Dylan; arching, pushing nipple out, making faces. He doesn't so all of them all of the time but he definitely has issues due to months and months of having various tubes down his throat coupled with reflux.

I worry that I have pushed him too hard and have caused some of the aversion. That makes me sad and pisses me off at the same time because I am not a doctor or nurse. They leave me on my own a lot because I am competent and show confidence, but they need to ensure everything is going well. It is their responsibility to make sure I'm doing it right.

That being said, I do really follow his cues and give him lots of breaks, I just push him a little bit past where he probably wants to stop.

Because of all of these thoughts, I did some more research this meowing regarding reflux and feeding aversions. Lots and lots of babies have this issue Nd they are not in the NICU. So the bottom line is that we need to go home. I think I could push to go home without the g-tube, but I honestly think it might be the best thing. It will take all of the immediate pressure off of each feeding and will ensure that he doesn't lose weight.

If we do the g-tube, and I think we will, it should be next Wednesday. Then, he'll need about a week of recovery before coming home.

But last night he took 52, 66, 60, and 52 from 9:30 pm to 6:30 am. That is his best stretch ever!

Then for me at 9:30 am he only took 19...possibly because he had to take his nasty vitamin orally.

So that is all stressful, but I also have a nurse that I don't really like. I have talked with every level of nursing here and they have all promised to give us consistency, but it doesn't happen. Yesterday and today we've had nurses that have only had him once before. I think the issue is that the system of assigning nurses is not computerized, but still..,I've given them lists of nurses I prefer. The little babies should definitely have priority, but when a nurse that I've just had the week before for 4 days in a row gets assigned to a stable baby in neighborhood c and I get a brand new nurses, I get really annoyed.

So I'm sitting here on a really big day without feeling much support. I don't feel like I can ask this nurse many questions because she doesn't know Dylan. And frankly, I don't like her.

I did ask the OT to come in and voiced my frustrations and asked her advice on how to do things today, but why do I always have to ask? It's exhausting! What would happen if I weren't here every day?

I feel much better now than before I talked with the OT...now I just have to wait for Dylan to wake up and hopefully take 60 again.

The whole goal of taking the tube out is for him to get hungrier. I'm also really hoping it'll put him on more of his own natural schedule.

I think he's stirring...

Tuesday, February 19, 2013

We made it.

Last week was one of the hardest weeks I've ever had, but it's over now and everyone is still alive.

And Saint Patrick's Day better be awesome this year because so far our holidays have sucked big time.  Dylan's surgery was on Halloween and Stella's was on Valentine's Day.

I have always loved Valentine's Day, but here's a snapshot of this year:

Me: I got you a card.

Husband: I got you a card too.

Me: I didn't sign it though.

Husband: Me Neither.

He did get me roses though : ).

Stella was a mess on V-Day.  I seriously thought she was going to have a panic attack that night.  The vet told us that we need to crate her for 8 weeks basically all of the time!  This is a one-year old crazy puppy dog!  Luckily on Friday she was doing much better and she has already had a lot of practice on 3 legs, so we are crating her when we are gone (mostly) and letting her do her thing, with the cone on, the rest of the time.

Here are the before and after pics:

Dylan is doing pretty well too.  He took another full feed last night and then right after took all but 6mls.  He severely lags in the early morning but I'm hoping that's because he wants to sleep through the night for me when he gets home : )!

If you are reading the other blog, you know that we are looking at a g-tube if he doesn't get up to where he needs to be in the next week but no matter what happens, he should be home very soon.

Here's his latest cute pic.  He's starting to know that he's cute! : )

Friday, February 8, 2013

When it rains...

You know the rest.

Having a preemie in the hospital for four months (yes, it's been 4!) would be enough.

But on Thursday, our one-year old puppy is having knee surgery.  She hurt her knee a few months ago.  The  vet we went to said we could wait awhile before doing surgery so we planned on doing it after Dylan was home so that we could be home with her.  But our usual vet saw her last week and said that we should have done the surgery immediately.  Thanks.  I already feel terrible enough that her knee-cap keeps popping out.  So anyway...surgery is on Thursday.  Happy Valentines Day Stella!

But wait...there's more.

We have termites and have to tent the house.

My mom found the droppings last week when we were getting our bedroom ready for Dylan.  Our inspection was today and it wasn't good.  We are rushing to get it done before Stella's surgery and before Dylan comes home.  So it looks like Monday will be spent getting all of our food and baby stuff out of the house.

It's almost funny at this point, but I'm also just kind of in awe of it all.  What is next?

I'm so full emotionally dealing with Stella and Dylan that I just don't have room for caring about the termites.

Fuck it.

Monday, February 4, 2013

Post Partum Issues

Throughout infertility, pregnancy, and now mom-hood, I haven't researched ahead of where I have been.  I remember a post on wedddingbee titled "What your mom never told you about childbirth."  I never ever clicked on it.  I didn't want to know.  So when I went into labor really early, I had absolutely no solid knowledge of what to expect, especially afterwards.  But I think some of you would like to know.

This post might be a teensy bit gross, so if you are a male or are squeamish, you might want to skip it - but it's a little bit of what you can expect.

And it's all the truth as I experienced it.

The best way to examine my post partum "issues" is through my Google searches:

Number 1
  • "extreme night sweats post partum"
    • For about a week I woke up completely drenched in sweat.  It was nuts!  I now know it's very common and is the body's way to get rid of excess fluid from pregnancy, but I was not prepared!  The night sweats only lasted about a week for me, but last much longer for others.  I also know get full-blown menopause-style hot flashes.  Like I must take off clothing this minute or I will die.
  • "large clot post partum"
    • This was the worst (and grossest) search.  A few days post partum, I passed a golf ball-sized clot while going to the bathroom.  I was terrified!  I googled first - at like 2:00 - then called L&D.  They weren't interested unless it was a bunch of clots or if it was larger than the size of a lime.  A LIME!
  • "b.lack n.ipples breast feeding" (I search breast feeding since it's much more common than pumping, but I'm really talking about pumping.)
    • How many of you get this?  My sister does.  I'm not sure if it's more common with pumping or breastfeeding, but it's weird.  The pressure of the pump causes blood to accumulate in the nipple.  It's not painful and if you press on it, it briefly turns white, then goes back to normal color.  But it's literally black.  Hot.
  • "purple underside of breast post partum"
    • The underside of one of my breasts was a purplish color for probably a month.  I didn't really know what it should look like all crazy engorged, so I didn't do anything about it for quite a long time.  Stupid.  The doc diagnosed me with mastitis, but it was not the terrible flue-like version that most people get.  I had no real symptoms besides the discoloration and a bit of a deep-burning that was occasional.  Let's just say if your breast itself turns a different color, get it checked out asap.
  • "milk blister"
    • I used too high of suction during the first couple of days and got tiny little fluid-filled blisters on my nipples.  It was not very comfortable!  Use the least suction that you can to empty your breast.  No matter what, pumping will hurt for the first two weeks (at least in my experience - although everything online says it shouldn't hurt).  Now it's just mildly uncomfortable.
  • "stiffness in back, epidural"
    • I never considered not getting an epidural.  I knew a bit about the potential effects on the baby, but knew nothing about longer-lasting effects.  I could barely bend my back for a long time and I had a deep bruise-like pain at the epidural site.  The stiffness was very disconcerting and I felt like it would never go away.  it could definitely have been exacerbated by my bed-rest.  Who knows?  My back is still a bit stiff 4 months later, but it's slowly loosening up.
I've probably searched a million other things too, but the above are a few that I had no idea about beforehand.  I hope they help you out a bit!

Saturday, February 2, 2013

Treading Water....Drowning

Everything went really well at first.  Dylan took 32 then 42, then 45 with an extra 10 an hour later.  He took between 30 and 40 overnight and in the morning.  That, according to the doctor, was treading water.

Then I got there and he just pooped out.  He took 28 for me at 11:15, then like 30 total for the rest of the day.  That's not enough to keep the tube away.  He even had a dry diaper : (.

I think it's just that he had a ton of energy yesterday from all of his calories, but didn't eat enough to sustain his energy level.

The day was really emotionally exhausting, but I'm ready to get the tube back in so he can get back to eating these new great amounts.  I know he has the ability to eat.  I even heard a new hungry cry which was kind of cool.  But he's definitely not quite ready yet.

I've decided to skip my BFF's Super Bowl party tomorrow.  I could handle baby showers while struggling to get pregnant, but I don't want to deal with people's questions tomorrow.  Or watch them fawn over her perfect month old daughter.  Love her.  But just don't want to deal.

I spent 11 hours at the hospital yesterday and 6 today so I'm taking a break tonight and will still go watch the Super Bowl somewhere tomorrow...

I really appreciate knowing that Dylan has so much support out there!

Friday, February 1, 2013

Sink or Swim

Ok, I am freaking out. My stomach actually hurts.

Five minutes ago, Dylan's nurse TURNED OFF his feeding. In the middle of it. The doctor decided its time to try "sink or swim. Essentially this is what all babies do, but Dylan has never not been on a schedule and I am totally scared!

What if sink or swim doesn't work? What if he never gets hungry and never wants to eat?

I really, really, really want this to work, but I'm honestly not very confident about it.

If it doesn't it's not the end of the world, we'll just go back to the tube and schedule, but then I'll feel like we failed...

Please wish us luck!

(And just so you know, the docs include me in all decisions, so I'm on board, just worried.)