Monday, June 2, 2008

Some progress

Please note: Anyone who has had a premie anywhere near as early as my Robbie, please see the post below. I'd love to hear from you.

Progress continues on a few fronts. It seems that my boobs MIGHT understand what is happening after all.
After taking a firm lead in the beginning, leftie had really gotten lazy sometimes refusing to even produce enough moisture to wet the cone. Righty isn't stupid and saw her chance to break ahead and is currently winning the race by a land slide. I think the embarrassment finally got to leftie again because at my 4am pump, leftie managed to make her first drops of something that resembled milk.

It's actually pathetic how good making what is probably 1/2 tablespoon of milk can do for my attitude. Finally, SOMETHING I can do.

After riding the I-have-a-purpose wave enough to get my very sore body around to washing cones & preparing myself for the next pump session, I called down to the NICU to check in.

I'm told he's being a good baby. They've turned his oxygen down a bit, which is good and his preassures are all good. When David and I went to see him earlier, he was getting a bit of a blood transfusion. David asked his blood type and we found out that he's A+. David is AB+ and I'm O+. David seemed disappointed that he wouldn't be able to be a donor if the time came, but I told him he could always donate for another baby who needs it.

In any case, his nurse sounded very positive on the phone, which continued my high a bit.

I spoke at length with a nurse who was also the mom of a 25w premie (now more like 2yo) yesterday and she warned me not to revel too much in the highs, because every high is followed by a low. They do really well and then it wears them out, so they have to recover.

Even in his less than 2 days out in the world, I've already experienced that exact thing. We want it all to be good, good, good.. but there will always be setbacks. I guess I'm already a helicopter mother.

So I'm trying to remain calm. I'm still incredibly overwhelmed by all the things I don't know, the things I wish I didn't know, the things that no one should ever know. I've been following links to blogs from those of you commenting with insight. I'm sorry I haven't been commenting a lot, but I am reading. Did I mention that I'm overwhelmed? I am overwhelmed, and having trouble sorting through all of the stuff in my mind.

I am completely aware that David feels the same way because he sat down and made a list of things to do this week. Those of you who know us probably think that's funny. I'm scattered and lost and David is making lists, sorting, stacking, organizing.

Earlier tonight, he was cleaning up our room a bit, matching milk bottles to caps, going through the brochures & information we've accumulated and I noticed tears in his eyes. When I asked if he was okay, all he could really say was how much he loved our Robbie.

Seeing him worry for his son.. seeing him love his son.. it's all very overwhelming to me. (Yes, I intend to use "overwhelming" for everything because it's the only thing that fits.) I guess I got a little used to the idea that bad things can happen to me, but this is happening to HIM and he doesn't deserve it at all.

Not that I do, mind you, just that I sort of accepted my fate as unlucky a long time ago.

I wish I knew what to do for David. I feel like he has it even worse than me. I can do SOMEthing- I can make some food for our son. Most of the time, the nurses seem so genuinely thrilled when I hand them something, that I beam with proud. Plus I have maternity leave coming. It won't be enough, but it's something.

David will have to go back to work at some point. Not really sure when. Maybe this week, even, but that's still be worked out.

I keep trying to picture our new life now. David goes to work, I go to the hospital?

I don't know what to do here. Right now I'm still a bit wobbly on my feet, so I go down to visit when I can, but mostly focus on keeping my feet up, drinking water, planning my next pump. But in a couple of days, they're going to send us home.

They're going to send us home w/o our baby. Then what? Am I going to be overcome with the need to come right back? Do I just come and sit for 8 hours/day? Which 8 hours? Should it be 12? What do I do when I'm here? Can I just pull up a chair and sit next to him? Read a book, talk to him? I honestly just don't know. He has these teams of people working on him all the time, so what is my purpose?

I can sit in a waiting room and visit every hour? Just read in the mean time? I don't know.

We went and checked out some information for a support group tonight. Again- David is doing the organizing. Hopefully we can check that out and get some sort of idea of what good we can do and how.

Hopefully from there we can start to adjust to our new normal.



Sara (lilyvalley) said...

Just wanted you to know that I continue to think about and pray for you all! I just wanted to let you know that there is a Preemie board on the Nest and some of the girls had their babies around 25w. Check it out, I am sure they can be of a support to you.

Monica said...

Hey guys --

My preemie wasn't nearly as early as yours, but I did go through a long hospital stay and emergency C due to pre-e, so I can relate at least a little to the terror or all that.

I just wanted to say that you continue to be in my prayers and I'm thinking of you all constantly.

Keep up the GREAT work, mom and dad! Robbie already knows how much you love him, of this I am certain.

Maria (MKC101103) said...

I'm sure you will get into a routine in a day or two. Then when you go home you can spend that time getting the nursery ready or shopping (in stores or online) for all wonderful things Robbie will need when he gets to go home with you!!

Tracy said...

You're a breastfeeding momma! Come on, leftie and rightie, it's a competition.

Overwhelming sounds like an understatement. Hang in there.

You'll find your way, Trish. I think reading to Robbie is a great idea.

Osh said...

Day by Day it will all come together...

Jess said...

Robbie will continue to be in my prayers. I can't even imagine how overwhelming this must all be. I'm sure you will find a new semblance of normal in a few days and it will include your SON!

Anonymous said...

So we pray that God will give you and David peace and direction through this time. You guys are a great support for each other and David is doing his job very well of supporting his family. I pray each day will get easier for all three of you.

Alexa said...

Our NICU had private rooms, so the situation is a little different, but here is what I did:
I went to the hospital everyday around 8:30 a.m., so that I could be there for rounds and hear what they said about Simone, plans for treatment, etc. Then I stayed there, sitting on a couch by her isolette using my laptop (there was wireless). Simone's isolette was covered most of the time, so I didn't see her much, but it helped me to be there, and I would touch her when she could tolerate it (usually just once a day) and the nurses would let me take her temperature or change her diaper so that I felt like I was doing something. I also pumped while I was there, but mostly I just sat reading blogs and writing. Around 5 I would leave, get some takeout, go home and watch mindless TV. When I got up in the night to pump, I'd call the NICU to check up on her.

I could have stayed overnight at the NICU (the couches folded into beds) but going home every night and decompressing was really important, I found.

The vital thing to remember, and I cannot stress this enough, is that it is different for everybody, and you should spend as much time at the hospital as you want to, and not feel bad if that is less than you think it "should" be. I needed to see every procedure, while my husband would leave when they were doing something hard to watch like putting in a central line, etc. Different people cope in different ways.
You are doing a great job already.

Alexa said...

Oh my god, sorry for the long comment, AGAIN.

Marie said...

I have twins. They were preemie. They are healthy now. 6 months. I am praying for you. I know your life right now, I have been there. Husband goes to work I go to the hospital all day. Pump, pump, pump, take milk to the NICU. Stay strong! I am thinking about you. You will get a routine down.

Amy said...

Hey Trish! This is Amy (ackdyolen) from the Sticky Board. Just wanted you to know I'm reading and thinking of you!! I'm so glad to hear that Robbie is doing well in general. Such a good sign ;-).

Milo said...

Hey Trishie!!
I just want you to know that you and David BOTH are doing great! It's hard. I can only imagine.

i know you will find a good routine to get into that you are comfortable with. I can't speak from experience, but it looks like you've gotten some good suggestions from other moms of preemies.

The important thing is that you get rest and let your body heal and spend time with Robbie when you can. When Caroline was in the NICU there was a chair I could sit in and pump, read, sleep, whatever. Hopefully you will be able to bring yor laptop and blog or read posts. I'm sure keeping this journal and getting your thoughts out has helped, not to mention all the love and support everyone continues to bring you!

Hang in there hon. You're doing great! :-)

Ariella said...

Trish, since I don't know anything about babies at 26 weeks I did what I do know how to do. I posted your questions on thenest on the preme board. I hope this is okay. Here is the link:

I hope the info helps. As always you are in my thoughts and prayers.

The Town Criers said...

Hey sweetie, first and foremost, congratulations! And welcome to the world, Robbie.

Our twins weren't that early, but I just wanted to give you support with the NICU stay. It is hard. It is hard to go home without your child. And it is hard to know what to do when you're there. Let the nurses know you want to be hands on and learn while you're there and don't be afraid that you're bothering them if you call to get a status report when you're not there. They are used to nervous parents.

I didn't heed this advice well, but I'm passing it along to you. Do not spend all of your time in the waiting room. Go home and rest too. Parenting in the NICU is nothing like parenting at home--parenting at home is much easier. You can rest, you can eat normal meals, you can be in your own space. Parenting in the hospital is so hard. The nurses kept telling me that I would have my whole life to take care of them and allow the nurses to take care of them in this short period of time.

Just know I'm thinking about you and sending lots of good thoughts. And if you need anything, write me and let me know.

Steve&Heather said...

Oh honey, I wish I had good advice for you. Just being near Robbie now will help you and him. As others have said, reading to him is an excellent idea.

You and David are so strong, hang on to that and to each other--your little boy needs to borrow some of that strength now so he can get healthy and come home to you guys.


Hyperfertile Infertile said...

It's all very overwhelming and we weren't there as long as you'll be there, and my kids (all of them!) weren't as early. But, it's still overwhelming and scary and such a two-step... two steps forward, one step back. Repeat ad nauseum.

I am guessing from your posts that your NICU is not private rooms. My girls' NICU was and that was wonderful, but Camden's NICU was not. Pull up a chair and sit yourself right on down. He may be in the hospital right now, but he doesn't belong to the hospital. He belongs to you. He is your son. He needs YOU! Just as much as he needs the doctors and nurses, just in a different way.

With Camden, I had Emilia and Jared at home, so I'd visit and then go home. This time, I had private rooms, so I spent all day there (James would drop me off on his way to work and pick me up in the evening). I'd do it the same way were the room not private, though. Just pull up a chair, read, go online (hopefully they have wifi), and be there for him.

It's heartbreaking to leave the hospital without your son. Spend as much time there as you need, but don't be afraid to take time away, too. You may need it and that is ok.

Amber said...

You might want to check out the archives of She had her Charlie at 26w due to pre-E and HELLP (and is now 31w pregnant w/#2). She's very very candid about her experiences - you might find it help.

Thinking about you and your family lots. Hugs all around.

Stacie said...

Hi Trish. (This is long. Sorry)

I have 28 weeker twins. I PPROMed at 26 weeks and held on for two more weeks. (I am so very proud of those two weeks. They were miserable for all involved.) When the boys were born, we all had infections and had more than our fair share of ups and downs in the NICU. I tried not to count it out, but the boys stayed somewhere around 14 and 15 1/2 weeks in the NICU.

Alexa said it the best. THis is an incredibly personal journey for each family. What one family finds comfortable is not necessarily what another family finds comfortable. I went to the hospital twice a day, by myself in the afternood for 3 hours or so, and at night with my husband for how ever long we could stay awake. I started to have issues with PTSD and was having a harder and harder time actually getting to the hospital by myself--not because I didn't want to be near the babies, but because I was just so emotionally spent that I was at my breaking point--so on some days, I only went with my husband (and considered that a success for me).

I also want to say that it is important to celebrate the successes your baby has. They will help you make it through the challenges that come up when you least expect it.

Take things one day at a time and be kind to yourself and your husband. The stress can do strange things to a couple, so really talk about what is going on with the baby to each other.

Please email me if you want to vent or talk to someone who has been there.

Much love,