My heart hurts

not for my own kids, but for Alexander.

He’s in the same room as B&D. He was born in April, so he’s almost 5 mos old. He brings me to tears every day. I’ve never seen his family visit.

I found out he’s most likely never going home. He’s on TPN (IV for nutrition). He can’t tolerate feeds. If he can’t eat, then he won’t last long because the liver can’t survive on TPN alone. He’s never been outside, never leaves his crib because he’s got too many hook ups. He’s 5 mos old and is alert and bored.

Today our nurse, kept him company while his nurse took her other patient for a CT. She’s had Alexander as a patient before. She didn’t pick him up, but sat him up and he just looked around and around. He was cooing, I could hear him. Finally a different view for him to look at. I was holding B&D and sobbing so hard. It was the closest Alexander’s been to being happy.

He’s labeled as a difficult baby because he cries a lot. He cries because he’s in pain or discomfort. He’s given Ativan. Nurses who care try to steer away from giving him Ativan. Other nurses have given him 11 doses in one shift. One day last week, he was so aggravated he pulled out 5 lines from his little body which had to be painfully put back in. Ugh, I saw the nurses strap him down and poke his head because they’ve run out of veins in his body.

He’s got a funny mohawk because he has several lines going into his head. The hospital won’t shave unnecessarily (they won’t cut anyone’s finger nails either) so Alexander has this crooked patch of hair running down his head.

I just want to pick him up and cuddle him. I want him to feel loved. I want him to feel the outside air. I want him to see something else besides the same view from his crib.

I don’t know how to feel better. I’ve got to pull myself together for my own kids, but Alexander is literally breaking my heart. What can I do for him? I was ready to donate my double stroller if it could be used to take him around the hospital or even outside. They need something with shelves to accommodate his feeding tubes and tanks. What’s wrong with me, why am I such a mess over this little guy?

I know our babies will come home, it’s just a matter of when. But Alexander won’t make it home. Will he ever feel skin on skin, like I do for B&D every day? Will he ever experience happiness? What can I do for him? He’s got a family, parents who called today. They just never visit. Maybe they can’t. Maybe after 5 mos, the parents had to go back to work. I think they’ve got other kids at home too. Are they keeping their distance so it’ll hurt less when he’s gone? Who cares. They should be at his bedside so he knows he’s loved. I just can’t stop crying over him. I wish I could bring him home with me.

Matty & Issy - July 4th

Can't believe it's been 4 years since our babies went to heaven. Thank you for watching over your siblings and keeping them safe. Mommy & Daddy love you and miss you so much.

Tuesday's Blog Party

Yes, it's been too long. There's much for me to update and I will soon. But my dear friend, JK, and her beautiful daughter, Tuesday has prompted to me come back before I was ready. Please visit go blog yourself and score some cool stuff for yourself and bring awareness to Pediatric Cancer because no child should suffer. please.

Now go spend some money for an amazing cause. please.

Quick update

I’m still mourning the loss of Tuesday. I think of her all the time and my heart breaks for her family. I pray for peace and comfort for them and everyone who loved Tuesday, including myself.

It’s been an emotional roller coaster for the past several weeks. I’ve struggled with life and death all within the same day. On L&B’s birthday, our surrogate was transported via helicopter to another hospital that had a NICU (neonatal intensive care unit) because we thought the babies would be born. It was also the day Tuesday passed. I experienced ranges of emotions all in one day that some experience over a lifetime.

The boys stayed put and I attended Tuesday’s service in CO. Tuesday was able to do so much in her short life and touched more people you and I will ever know, including getting a group of 23 twin moms who met online 3 years ago, to leave behind their spouses and children to be there for Tuesday and her family. The moms flew in from all over the US, and even from Meike from Honduras! It was a beautiful day, a touching celebration and a heartfelt gathering to support Tuesday’s family. I was so grateful to be a part of it.

J&T have set aside their drama and are doing well. We have a c section scheduled for Sunday, 2/22. We’re opting for surgery because Tommy is breech. Little bugger has been teasing us all along by being breech, then head down and now breech again. This will be the first time we’re away from L&B for more than a night and I’m a little anxious on how they’ll do.

There’s our quick update. I’m not sure when I’ll be back because I think things are going to be a little chaotic initially from being a family of four to a family of six.

Keep us in your thoughts and pray for a safe and healthy delivery.

ps Pics of Bree loving frosting from their birthday cake -