Pic Dump

Hello,

So far so good for one week! Status quo is the way to go! A good last week and a quiet weekend has really lifted our spirits, though we are aware we have 2 months til these kids come home..

Ender is currently off the vent as of Monday. The attending warned us that it is not uncommon that premies have trouble and require reintubation. However, Ender has been a champ the last 2 days, going from 3lbs 10oz to 4lbs. He apparently takes after his father and enjoys food, he is up to 20 ml per 3 hours breast milk per day. Ender has been very active, keeping the nurses busy with his poops! Since being extubated, Ender has done a lot of skin to skin. As you will see in the pictures, he has also been getting MUCH needed rest. I cannot express enough how proud of this boy we are, he has been through more than most adults and is only 3 weeks old!

Rooney surprised us today. The tube for her CPAP kept coming out her nose. Nurses were frequently finding her without the tubes, breathing fine. The attending decided to take her off of CPAP and set her to only humidified room air. Rooney is no longer on fluids, only fortified breastmilk (added Iron and Vitamin D). She has been gaining weight slowly but surely, we just wish it was as fast as her brother!

Ender has been getting less puffy as his body fights the meningitis. The two of them are starting to look alike (they both look like babies) in some pictures!

Their Room!

The view from the 8th floor is of downtown Pittsburgh, something like this..

Ender

 with mom

 Feeling Relieved...

 Again, making the nurse work for her money

 MUCH needed rest and skin

 Rooney learned early not to take shit from anyone.

 Pisserooney

Stop messing with me, I'm trying to sleep..

When Life Gives you Anchovies...

Just cover them up with extra cheese and make a pizza! Song...

We are thankful for a couple of stable days! The goal of this post is only to continue good feelings. Babies are on the right track currently, and we are hoping that they stay that way. Ender's face has started to be less swollen and he is looking cuter by the day. We are employing cautious optimism. He still has a long road ahead, but the status since Sunday makes our eyes water with happiness.

Ender started feeds today at 4 ml of breast milk via feeding tube. We are hopeful that he will take a huge shit over the next couple of days! (sorry for the language Grandma!) Rooney took the feeding tube and pulled it all the way out of her stomach today! Yay Rooney! Unfortunately you are still too young to swallow! The nurse put the tube back in and continued her 12 ml of breast milk. She has been pooping, all systems appear to be ok. We have been holding Rooney over the last couple days, she whines and complains until she hits your skin. Ender will hopefully be extubated tomorrow and we are looking forward to holding him and doing skin to skin.

Thank you thank you thank you for the good vibes and kind works. We literally could not survive this without you! Here is the reason you have been reading these posts!

Ender

Premies can't control their eyes yet!

 Snoozing!

The Creation of Rooney

 Hulk!

No Growth

Ender had a wild weekend. His MRI came back Sunday showing very grim results. His clot had grown and swelling in his brain had increased causing severe damage to his brain. Libby and I had a very rough Sunday Evening, we ended up sleeping at the hospital. Monday, our Attending and a Neurologist came in and gave us another lease on life. The Neurologist said that she disagreed with the previous night's radiologist. She thought that Ender's clot had actually not grown and swelling had not increased. She wanted another set of eyes, so she sent away for the chief of Neuro-Radiology to take a look. He agreed. Ender had another MRI Tuesday, this time with dye. The results came back that the clot had not grown and that there was no damage they could see in his brain. As you can imagine, we were incredibly happy by this news, it really gave us hope for the future. Ender will continue to have brain ultrasounds 2 times a week and will have another MRI in the future to ensure that the clot is not growing and that his body is rerouting blood around the clot. The Neurologist also did a physical assessment of Ender. She reported that he responds to touch and his limbs and facial movements appear to be healthy. Ender is being cycled off his anti seizure meds, which will liven him up and they can extubate him so we can get some better pics! Libby and I are head over heals in love with these kids.

Rooney is currently 3 lbs 4 oz (Ender is 3 lbs 8 oz). She started her feeds on Monday. She was getting 3 ml of breast milk every 3 hours. On Tuesday, she was increased to 6 ml per 3 hours, slowly increasing to make sure her intestines could take it. Today, she had 15 ml still in her stomach at feed time. The docs took an xray to see if she was having issues, but it turned out she was really constipated! The nurse tried to coax a poop on by taking her temperature and then giving her a suppository. I have said Rooney is a grumpy old man before, but you should see her after that! Hopefully she poops soon.


Ender

Roo

Ender

I'm going to start with Ender, because a lot has happened since my last post. On Friday, he had an MRI of his brain that showed some concerning items. There was evidence that he had a mild stroke which caused very small amount of damage deep in his right brain. We spoke with a neurologist who said that the area around the damage looked unaffected and that the damage would probably clear by the next MRI. The other thing they found which is more troubling, is that Ender has a blood clot in one of the main drainage vessels in his brain. Currently, blood is draining through other vessels from his brain and is not currently causing any swelling or pressure, though the attending thinks there will be soon. Ender is too young and small to get any blood thinners or anti clot medication as they pose a big risk of bleeding. Due to this risk, we are hoping that the clot does not grow or spread. To further the stress of the situation, Ender had a seizure last night around 7 pm. There are multiple different factors at play, we are mainly just waiting for him to have another MRI to see what is to come. Please keep Ender in your thoughts, he is in a hard place right now.

Fortunately there are no updates on Rooney. She is doing well and is stable. She gained 93 grams yesterday, which is almost 1/15 of her body weight! There is a double room open here at Children's. We are championing getting her moved today, hopefully it will happen.

Bubbles

 Roo

 Gingeroo

 Ender

 Roo