Type A Momma » Blog Archive » No surgery today …

September 19, 2008 | Filed in: Uncategorized

I’m not really sure where to start, as we learn more and more information daily. This whole experience is something I’d never wish on any parent. Giving birth and welcoming new life into this world is one of life’s greatest blessings , not to be able to bring your precious child home to love, hold and explore is one of life’s greatest heartaches …

When I hold my baby I must always be aware of all the many tubes and IV’s attached to his fragile body … do they have enough slack, is he comfortable are any being pinched etc … It’s all very surreal because when he’s wrapped up nice n’ tight in his blanket and you can’t see the tubes he looks like a healthy baby boy and for just a few seconds I forget about the long, rough road that lies ahead.

Yesterday was a crying day … we had A LOT of information thrown at us, none of it good. My day started by learning that his 3rd IV blew … They’ve been rotating Andrew’s IV’s between his hands and feet. He’s having to receive SO much more fluid than healthy babies and apparently his little veins can’t handle it, so they take what they can until they blow. I walked over to his station in the NICU and saw his swollen, puffy , bruised foot and just began crying and couldn’t stop. This happened so many times yesterday that last night I was asked to give consent for something called a “pic line “. It’s basically a more permanent IV that’s run threw Andrew’s arm across his shoulder and in near his heart. Almost all the babies in the NICU have them, not that it makes me feel any better.

We talked with and met a few of his doctors yesterday … the Nephrologist explained in great detail for about an hour how Andrew needs dialysis and eventually a kidney transplant and all that it would entail, all of which I cried threw. He told us that his life will most likely be like a roller coaster … that we’ll have many ups and downs with his health should he live long enough to reach his goal weight of 20lbs so he can receive a transplant. I HATE roller coasters … Then he told us that he was going to try and get one of his partners to place a tube that would run in between Andrews body and skin across his abdomen and into his belly button. ( I forget what it’s called at the moment but it would be used for dialysis ). Since Andrew was scheduled for surgery today they decided to do both procedures at the same time.

To make an incredibly long story short, when we arrived this morning for Andrews surgery, the Pediatric Urologist told us that he’d decided to wait on the surgery. That he decided he wanted more information and since Andrew is only 3 days old, he wants to see what his little body might do. Of course we’re happy that we didn’t have surgery today … It’s in our near future but everyday Andrew’s given to get stronger is best in my opinion.

Andrew’s been given so many medications for his PIC LINE and in preparation for surgery that he was VERY sleepy and lethargic today, so he didn’t eat well and had to have a feeding tube placed down his tiny throat. I barley saw him today simply out of exhaustion. I haven’t slept, my body is still healing, my milk came in today, I got up at 5am for his surgery … I had to take a day and rest. But tomorrow I plan on sitting with my baby and giving him some serious mommy time. I think it will make both of us feel better …

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Wow…that’s a lot to take in. You’re so strong and I KNOW Andrew feels that.

I hate roller coasters too, but at least you have the chance to ride one. And parts of it are always fun…

Keep fighting and enjoy your time with your baby. Give him a kiss for me.

Love you!

The NICU is such a hard place. It is such a hard thing to see your baby that way. I know there’s nothing I could say to make it easier. Just know that you have people thinking of you.

He’s a great weight for a preemie and I agree; each day, he’s getting stronger. The feeding tube can only help him grow faster.

Take care of yourself and your beautiful family.

I’m so sorry Hannah. I wish I could be there with you and help you. I wish I could make everything better for Andrew and that none of you would have to go through this! My heart aches for you and I know there is nothing at this point that I can say to make you feel better… but one thing we all know is that Andrew has parents that love and adore him and will do anything for him… and we also know that he is in good hands with the doctors and staff at the hospital. I know this is going to be a long road ahead of you, but please know that you have a lot of support from your friends and family. If I can do anything for you please let me know. Even if you just need someone to vent too. I’m here for you. And I love you guys so much!

Oh honey – I’m so sorry. I don’t know what to say. I don’t like roller coasters either. It’s so hard to not know what your future holds. But I agree that just holding your baby has to help. I’m thinking about you.

I hate roller coaster too. And I’m sorry Andrew’s life had to be started on one.

I’m so glad you took yesterday to rest and to take care of yourself. You guys have a very long road ahead of you and the best thing you can do for Andrew is to take care of yourself!

If you haven’t already started kangaroo time ask if you can. There’s something wonderfully comforting about feeling your warm little baby against your skin.

Love ya!

I’m so sorry that you’re going through this. I know how hard it is to see your baby hurting, and mix it with th epost-artum hormones and it’s a hard, hard thing for a mom. I wish you both all the best, and I’ll be thinking about your little man.

My heart goes out to you and your family. Hang in there. all the moms across the globe feel your pain and just know that you are NOT alone. There are millions of us, right there with you, holding you up when you just don’t have the strength to do it yourself. Good luck and I’ll keep up with all your updates.

I realized the other day that Andrew’s birthday is a day before my boy’s birthday. My heart ached as I read your last post because it reminded me of the emotional drain from seeing your child engulfed in feeding tubes and IVs and the enormous stress and chaos that accompanies it. I remember that dreaded PIC Line consent form and I just want to hug you right now and take all of this stress, fatigue, heart ache and anxiety away for you guys.
I feel like there isn’t really anything I can say that will lessen any of your pain right now but I hope you know how much we all love you guys and are praying for a miracle.
Don’t let those tubes and IVs scare you, Hannah. You hold the little guy as much as you can!

My heart goes out to you. I can’t even begin to imagine how hard this all is.

I have no words to bring you any comfort, but please know you are at the top of my list of prayers each day. I just know everything is going to work out and Andrew will go stronger and get what he needs. In the meantime, I hope you’re getting what you need and know that we are all with you.

i know how scary it is to be faced with tubes and permanent lines put in your son’s body– just try to remember that it will be so much easier for Andrew with them in place. Hold on to the fact that he’s alive and fighting, and that his doctors are being cautious and doing what’s best for him. i’m glad you’re trying to take care of yourself, too… snuggle that cute baby whenever you’re able– your love and closeness will help him! Love to you and your family…

I’m keeping all of you in my prayers. As the mom of two preemies, one who was in the PICU for 3 weeks, I just want to encourage you to rest as much as you can because Andrew needs you to be strong for him.

Those lines and tubes are heartbreaking, but they will start disappearing as he grows stronger. Keep the faith.

Hey Hannah,
You have to take care of yourself in order to take care of Andrew and Emma. Easier said than done, but don’t feel bad when you need a break for yourself. He’s lucky to have such a strong woman for his mom! I’m thinking of you guys!

Sweetie, you are incredibly courageous, and I know you have angels of all sorts around you helping Andrew: the medical staff, your family and friends, and everyone–friend and stranger–who is sending prayers and positive thoughts. You just take all that goodness into your heart, and let yourself and your baby marinate in perfect love.
What you are doing isn’t easy, and yet you carry on with grace and courage. Know that a legion of cheerleaders are rooting for all four of you from the sidelines, praying for the best.
Hang in there, Hannah–I love you!
xoxoxo Ant Marti

You do need that mommy and son time. Love him like only you can, I know that you will. Wrap a giant hug around him from all of us here. We are praying SO hard for him, Hannah. Give Emma a hug from Landon. Stay strong- I love you. Jillian

Hannah the roller coasters really do suck. But you and Andrew are strong. I’m still sending good vibes and energy your way and lighting my candles. *hugs*

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Howdy! My name is Hannah and this is my blog! While pregnant with my second child and on house arrest, I mean bed rest, due to some serious complications... I figured it'd be cheaper if I started blogging rather than shop online, so here I am ~ blogging about my MIRACLE baby, and at times my crazy ass pre-schooler! BTW, I've learned that just because I'm a REALLY GOOD online shopper, does not make me "computer savvy!" Read more About Me!

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