I feel like all I do lately is post and run, but...

S-Tuna · July 2011

I've got another Ian update and then I'm going to bed. But I'll be back around 2:30am when it's time to pump, lol.

Ian is still in the NICU. We are there for about 9ish hours a day right now (which is why I am never here anymore). We talked to one of his doctors today, and his encephalocele (read: hole in skull with skin/hair covered bump on back of head) does in fact have brain matter in it We have some more tests scheduled for tomorrow (vision and heart) to try to figure out if he has a genetic condition and what it could be. Right now, he is physically functioning. But we have no idea what his mental, emotional, cognitive development will be like as he gets older. If we can link his abnormalities to a genetic condition, they will be able to give us some indication of what his development might look like for the future. Until then, we wait and watch.

I'm trying not to let this sink in until we get tomorrow's test results back and talk with a geneticist. But it's a pretty hard pill to swallow. Until then we make jokes about how much hair is on his encephalocele and how smart he will be because his brain is too big to fit inside his skull. And I cry a lot, thank you crazy hormones. Here are 2 pictures that show the encephalocele.

We could really use some extra thoughts and prayers right about now. This is way harder than I thought it would be, and I thought it would be pretty hard.

Again sorry to post and run. I have been lurking here and there. Congrats to all the new mamas! Everyone else is ALMOST there! We are minutes away from August!!

Cobra11 · July 2011

So sorry it's been so rough for you, I hope you get some good news soon. On a happier note, that is a pretty precious baby you got there!!! Lots of good vibes sent your way!!

mandyhall2882 · July 2011

T&P are with you and your precious little one. I hope you hear good news soon! *hugs*

ShandaLea · July 2011

He is absolutely adorable! You take care of yourself and that precious baby! We will still be here with open arms once you guys all get home and settled and until then you both will continue to be in my thoughts and prayers.

navybride06 · July 2011

Sending a million prayers and thoughts.

Jelliebean1982 · July 2011

At least you are still posting! I love seeing your Ian updates. Many prayers are being sent your way.

BobbiJanay07 · July 2011

Hugs.

ejmay01 · July 2011

Thoughts and prayers to you and your family! Please continue to keep us posted as you are able. And btw....Ian is absolutely precious!

AnnaRedhead · July 2011

Aww sweetie I am so sorry you are going through all of this:( I am praying for your sweet little boy and hoping the geneticist has some good news for ya'll tomorrow. We are all thinking about you and praying for you! Please keep us updated if you can.

NativeFloridian · July 2011

As if anyone blames you for posting and running! You just tend to that adorable little boy, and try to keep your chin up. A bajillion thoughts and prayers for you guys, and big hopes for positive news. Keep us updated when you can, but mostly just enjoy your little man!

lob · August 2011

Sending many happy thoughts towards Ian and your entire family. Hugs.

katchowski · August 2011

Thank you for the update! You are in my thoughts and prayers.

kjgilhoo · August 2011

Thanks for the update! Ian is adorable and I'm sure you've got a stellar team of Doctor's working with him. Will be thinking about you and hoping that you get the answers you need very soon. Take care

desmerelda317 · August 2011

Oh, S-Tuna, you have been through such a roller-coaster ride. I hope the tests bring back good news. I am praying and thinking of you, your husband, and sweet little Ian.

JaysonandKristin · August 2011

Ok, I've gotten the birth story that I asked for. I got to see pictures of your beautiful Ian. NOW, I'm waiting for your discharge story. I'm waiting for the story that means that all you have left to see of doctors are scheduled follow ups with specialists (and perhaps a few future surgeries). THAT is the next monumental day!

On his first birthday, the NICU will be a memory.

You and your hubby keep your spirits up... but, don't feel bad for being overwhelmed with all sorts of emotions. Embrace them all, and don't hold back. I cried in public sometimes for "no reason at all" (at least to innocent bystanders), and all my DH could do was talk me through it.

Keep posting and running... be bedside as much as you can.

We'll be thinking of you and your Ian.

mcatmay · August 2011

You're doing great, mama - i know that you may feel like you're an emotional mess but, by God, you've earned that right - as long as you're there with Ian, that's all that matters. I can only imagine how difficult this is right now but Ian is a strong and beautiful boy and you guys will get through things as a family. A mix of laughter and tears is the only way to get through these things and bravo to you and your DH for taking it a day at a time. Hope the geneticist can give you some answers!!! Lots and lots of hugs - you guys are definitely in my thoughts.