Rough Day

Today has been pretty rough. Max has not been awake hardly at all, it's been a challenge getting him to eat for more than a couple minutes. It's taken me over an hour to get him full because he is just too wiped out and tired. We thought we were going home today, but turns out the Echo from yesterday said that his pulmonary Hypertension is still there enough that he needs to be on oxygen a little longer. So we have to stay at least another night to learn how to adjust to taking care of him on our own with the oxygen. We went through the CPR training and we will be learning how to hook him up to all of his stuff in a few min or so. I was really hoping for better news but at least its just a few monitors and oxygen. They say he may only need it for a month so we are crossing our fingers. I've had an emotional day, he had to get his eyes checked today and for the most part it was good news. It was traumatizing for me to watch him get them checked, he was not a happy little man. He will most likely be able to see out of his right eye just fine, his left eye they are unsure of and won't know more until about 6 months. He may have to wear glasses for a while. He has whats called a key hole eye where the color doesn't completely develop so the pupil is shaped differently. It's hardly noticeable, in fact Tony and I noticed it first and asked to have them checked. So we are hoping for better news in 6 months and that he will be able to see out of both of them. He also had his hearing checked and passed with 100%! Yay! Good news! I was very happy to hear that. He also passed his car seat test with flying colors. He was asleep when I put him in it and stayed asleep the whole 90 min! Anyways, that's a little update for now. Here are a few pics for the day. 

The sunset as we walked in the NICU tonight, this picture doesn't do it justice but it was beautiful. I haven't been outside of the hospital in days so it was wonderful! 

Hangin' out in the car seat! 

Bath Time

Maximus had his first real bath last night! (at 1am mind you, triplets were being born so he had to wait). He loved just sitting in the warm water all snuggled in a blanket. He didn't like mommy washing him. He wanted to just relax, I don't blame him. But he did pretty good! I was so proud of him. I was a little worried about what the soap would do to his skin but it was pretty mild and not a whole lot. This morning it doesn't look worse so I think we're ok! Yay! His skin is starting to clear up here and there. He still has the one on his head that's pretty bad and the one on his leg is still there and he has a few that look like little rashes here and there but they don't seem to bother him too much. He is also eating really really good. He is usually starving by the time I get to him. Sometimes he goes 4 hours without getting hungry. The only concern we have as of last night is his weight. He's dropped a few more ounces than they wanted but he is still in the first week so we are hoping that will come up and not be too big of an issue. Also we think we are going home today!!! He just has to pass his oxygen off so we don't have to take it home with us and stay another night to learn all that comes with that. And then also he needs to pass the car seat test, 90 min in the car seat with dropping below his normal levels. We are crossing our fingers!

As far as mom goes, I over did it a little yesterday. It's so hard not to when your here at the hospital and have to walk a lot and learn all the little things to care for him when we get home. But it's worth it. I just hope I don't set myself back. I'm exhausted! Being home will be much more comfortable. Can't wait. Anyway here are a few pics.

Flexing for the ladies!

Maximus has definitely got some muscles! He loves hanging out on mommy! He is doing so well today! They took him off of his mess last night, then weened him off of his IV, and now we are waiting for the echo testing to come back and see if we can get him off of his oxygen. I'm so excited that he is doing better and that we will be able to deal with his skin and other things from home. He is being moved from the bed he is currently in to the empty bed!

It just means he is getting ready for discharge maybe tomorrow or the next day! I hope he keeps improving. Thanks to everyone's hope and prayers. We are so thankful and grateful. And I promise I'll get to the birth story soon!

Daddy is awesome!

Maximus is doing pretty good today. He is trying to learn how to nurse and it's been a bit rough at times. However he love skin to skin time with mommy. He is so content laying with me. He doesn't move a muscle and he could sleep there all day. He has nursed about 4 times today and 3/4 he did really well. I have to say again I have the best husband and Maximus has the best daddy, Tony has change more diapers than me by far! In fact even the first one! I am staying the night at the hospital. They are wanting to ween him from his IV so I need to try and nurse him every feeding. Tony is exhausted so I am making him go home to get a good nights rest without interruptions from nurses and pumping. He has been doing so much for me considering I can barely walk sometimes and can't do housework (which is killing me) or lift more than 7lbs 4oz. Today we've been at the hospital since 10am and I'll be here through the night and tomorrow. Anyone that wants to come visit with me is more than welcome! There's a parents lounge we can sit in. Just let me know! Anyways hope all is well with everyone, again thanks for all the prayers, thoughts, gifts, and love! We love you all! Goodnight!

A little video

Merry Christmas everyone!

Here is a little video of Maximus I took last night when we said goodbye after I was discharged from the hospital. It was so hard leaving and not taking my baby home, but I know he is in good hands.

The nurse he has had the last couple of days has been awesome. We love her. She is gone for 4 days now and we and Maximus will miss her! You can just tell she has a lot of love for our little guy, we think she requested to be with him on her shifts. This morning I got a phone call from the neonatal Dr that is on his case. Dr Marelli and she said that she thinks at this point the only thing holding him back from coming home is being able to nurse. They want him to nurse for the milk and for the endorphins he will get from nursing. So the Dr wants me at as many feeding times I can be to get him to figure it out so he can come home. So at 10 this morning we headed over to try it for the 3rd time and he wasn't going to have anything to do with it. He got very upset and was crying pretty hard. I felt so bad for the little guy. After a few minutes we let him just have skin to skin contact and he fell asleep for a good half hour with me. It was the best! I just enjoyed every second of it and he was so content and comfortable. We are going back here in a few minutes to try again, wish us luck this time! Here are a few more photos. 

Our Little Miracle

Hello everyone it's late right now and Christmas Eve so I'm not going to go into too much detail on Baby Maximus tonight. He's here! He was born on December 22, 2011 at 12:35am and weighed 7lbs 4oz and was 20 inches long. He came into the world with a quick decision of C-Section. I will go more into the birth story later next week when I get Christmas over with. Right now I just want to say that he is a special miracle in our lives. He was born with a few complications that we did not know about until he arrived and he and his daddy went straight to the NICU. He has not been 100% diagnosed with anything yet but they are pretty sure he has whats called Glotz Syndrome. (don't google it, because it will tell you more than anyone really knows about the syndrome) Maximus is a fighter and has improved so much. A few things thats going on with him, on his right hand his pointer finger is webbed with his middle finger, on his right foot he is missing a toe and his big toe it kind of a clef foot or what I call his monkey foot (and it's cute!), his spine is a little curved not too bad though, and then he has some skin lesions or sores we are not sure exactly what they are or what they need to do about them. Most of them are healing and going away and his skin looks really well everyday. He just has one on the top of his head that is concerning but they think it will go away. He is really doing well! We love him so much! He has had a lot of support and love and prayers. Here are a few pics of our little miracle. Today Santa came to see him and that was quite the adventure and it wore him completely out! We even got to dress him in a little outfit for the first time to wear with Santa. We are not sure when he will be coming home because a lot of specialists and a lot of Dr's want to study him because he has such a rare thing going on. I will post more on whats been happening and his improvement later here are some pics. 

One of my favorite pics

Just chillin'

Right before seeing Santa

Merry Christmas! 

Maximus with Mommy

Maximus with Daddy

Maximus with Grandma

Maximus with Grandpa

First family pic

Maximus' nerdy Daddy!

Thank you to all those who are supporting us in this process! We love and appreciate all of your thoughts, visits, prayers and love. We hope to bring Maximus home soon so you can all meet the special little guy!