Feeding & other happenings.

I am a champion pumper! My milk came in a few days after Eli was born, and when things get rough, I secretly tell myself that I'm going to go make eli breakfast/lunch/dinner/and a snack, and it makes me feel like I'm doing something for him. 

It's been good for me, it helps a bit with that helpless feeling. Perhaps it's too much info, but I'm getting about 6 ounces every pump. Not bad for only 2 weeks in! Keeping it up is the hard part. It's not easy, this pumping ordeal. I lasted a month with Lucas so I'm halfway there and in hopes to do it longer :) I can't have the physical bond of breast feeding with Eli so pumping makes me feel like its the best I can do until we're able to touch. And I'm in desperate need of that these days. Getting closer. 

But so far away. 

They gave him his first feed today. Such a huge step in this process. He's not been fed in 14 days! Can you imagine? Technically he's been getting nutrients through TPN but actual milk/formula gets held off in most hypoplastic cases according to one of the docs here. It was just so sad to know our baby couldn't eat. 

His nurse stopped the constant pain drip this morning and only gives him a dose when he's showing signs of pain. Otherwise, he wiggles his toes and occasionally opens his eyes and looks around, but for the most part, he's still sleeping. They put casts on his hands to get his fingers unclenched. They haven't gotten stretched out much so these casts will help his little fingers get some tone and strength back! He's definitely working those casts. His arms are flailing all over the place. It's kinda funny. 

Moving him off the ventilator is on the agenda for tomorrow...although they keep telling us that it's all on his schedule. Once he's off the ventilator, things will hopefully go really fast in his recovery.  

Todays happenings make me smile. It's the little things now...

Chest closing

He's out!

He's still sedated, but no more open chest! He's got a couple of bandages and still has a bunch of tubes (one most importantly for drainage), but he looks great!

Thank you God.

So most of the day my brain runs around in a million different ways. From my next assignment in my summer class to 5 years from now when I'm pulling Lucas off his little brother in fear he may break his little heart. I know. It's a crazy way to think but that leads me to this post. 

I am a mother of 2! Two beautiful boys at that. I have not had the easiest road but I can't say it's been horrible either. Every fight and every trial has gotten us to where we are today. Many messages I've received and posts I've gotten have sort of the same pattern. "I envy your strength and couldn't imagine what you are going through!" More of you have expressed how you admire my courage and will to be strong during this process.

I can't tell you where it comes from. I don't think you can really prepare yourself for something like this. Yes, we knew for 18 weeks before Eli arrived but actually seeing your own child in this setting and in this state is a whole new ball game. I've had my moments. They haven't been too over dramatic. Wheeling Eli into the OR was one of them. Danny was able to console me as we got to the elevator and I was asked to kiss my baby boy goodbye. My other was in the shower the first night Eli was in recovery. Yes it was one of those awful scenes from a drama movie where the woman is on the bathroom floor and the shower is pouring down and she's just bawling. It wasnt one my finer moments but dammit it was a relief. I just cried. I gave everything I had that night to the man above. I couldn't hold it in any longer. I think it was at that point where I answered the above question. I'm by no means religious but when you've got so many praying and pulling for your family you can't help but close your eyes for a few seconds and just say thank you. 

Thank you God. 

Our views (non graphic)

Danny and I agreed to take pics but not show any graphic ones unless family wanted to see. In the meantime these few photos are what consume our minds all day long. Lots of medical devices and meds running through him all day long. I feel like he's a tangled mess waiting to happen. Just so many things going on. The last pic is of Eli today with one of his eyes open after hearing my voice. I couldn't be happier :)

Recovery

Eli is out of surgery and in recovery. We were able to be with him about 3 hours after they came in to let us know he was done. He's stable, but paralyzed and sedated. His chest is still open. We were able to bring ourselves to look at it. Luckily, they keep a blanket over him, and I get to peek at his nose and those tiny, tiny toes. Hoping by Monday they'll start weaning him off all the things he is   hooked into. It all depends on when they take him off the ventilator.

He is just going along with what the machines and medicines tell him to do. It's hard for me to see him like this...on a ventilator, tubes everywhere. It's an emotional time for Danny and I. Very emotional. 

We want to send out one huge thank you for all the prayers and messages. Your continuing support has been amazing and we appreciate all of you. Please keep praying. We have a long road ahead and the next 48 hours are very critical. 

Surgery 1/3: Norwood

Of course I'm up. Who sleeps in on the morning of their sons surgery. Besides Danny :) which is ok with me because I've turned info a real cry baby since 5:45am. It was like 5 months of emotion all at once hit me when I woke up to pump. I didn't even get a chance to wipe the crap from my eyes. The tears did that for me. Probably the most emotional I have gotten since we found out about baby Eli and his hypoplastic diagnosis. 

They are prepping him now. One last bath was given late last night which I stayed up for then slowly passed out once his whimpers faded out. I just couldn't get myself to let them disappear from my ears. So here we are. The day of Eli's first of 3 surgeries. A day we have been praying about, blogging about, fundraising for, and as parents, dreading. We know he needs this but deep down, secretly hoping it was all still a dream. That our little boy was ok. Someone made a mistake and will at any moment pop out and say he's OK! Right? Anyone, at anytime...no? Ok fine. I tried. 

I will update at the bottom of this page as the day goes along. So here we go...

6:25. Last minute assessments from the RN's 

7:30 Wheeled him into OR. We are in a private waiting room. 

9:25 Incision made. All lines in and good. 

10:10 sewing on shunt 

11:30 Bypass has taken over

1:00 his body is cooled down to 18 degrees Celsius So they can do the repair

2:15 working on aorta 

3:45 body is back to warming up. Finishing some stuff with his shunt. Should be off bypass soon. 

5:10 off bypass! Checking for bleeding. 

6:10 having some bleeding issues but not too serious. 

7:00 Eli is out of surgery. Chest will remain open for a few days. Swelling and bleeding but all is good. We will probably be able to see him around 8-9pm.

Just pray...

The doctors say that Eli has handled everything wonderfully, as best as they could have expected or wanted to this point. Of course, I still feel like we're walking on tiptoes and that at any moment, it could all fall apart, but we're holding on to the little baby steps he's making. That's all we can ask, and really, all we can do.

As for us, I think we're holding up okay. I sometimes forget that I just gave birth a week ago, and that on top of it all, I'm a ball of hormones. 

Danny has been incredible. I don't think I would have survived any of this without him. Our families and friends have all been so incredibly supportive, and knowing you're all out there pulling for our little boy, a boy many of you have never met from a mama you've never met, amazes me. It's all such a source of strength and energy for us. For that, we thank you. 

Right now, though, our bodies are a mixture of sheer exhaustion and adrenaline, and it's hard sometimes to figure out which one should win out. We're going to need all this energy when he starts surgery and then comes out, and we really start to become responsible for doing all those parent things again. We can't wait.

So I ask that before you go to bed Thursday night that you pray. Pray for our sweet little man. Pray for love, strength and hope. Pray that God chooses to give this little boy life. A life of everlasting love.

Xoxo