Maximus needs Muscles!

Went to the Pediatrician yesterday to see what to do about Maximus's weight. He said to breast feed him for 10 min and then give him a 2 oz bottle of breast milk (good thing I have a freezer full and I'm still pumping) every 3 hours. So what I do is set an alarm on my phone for 2 hours 40 min, go pump one side, then feed him on the other for the 10 min, then give him the freshly pumped milk (if I don't pump 2 oz, I use some of the frozen). He seems to do well most of the time, he is suppose to have at least an ounce of the bottle but I try to get him to take the full two ounces. Usually I only get him to take about an ounce and a half. We go back to the Dr tomorrow and if he has gained at least 4-5 ounces then we know we are on the right track. If not, then we may have to do the 3 day hospital stay to run some weight tests and see if it could be related to Goltz. I'm praying that he has gained the 4-5 ounces! I DO NOT want to be in the hospital with a bunch of other sick people and potentially get him sick. I may have Tony give him a blessing tonight and maybe me too! Ha ha, it's so stressful as a mom, I keep running through my head things like: Is it me? Am I doing something wrong? Is it because I slowed down on pumping? Am I producing enough good milk? Am I not feeding him enough? I feel so bad sometimes for the little guy because he is completely dependent on me and I don't want to be doing something wrong or not doing something I should. I know this is just worry talking, but it's so hard not to worry. The best part is I have a little trooper! He has been such a good baby. Hasn't been acting like he is lacking food or anything. I've noticed that after he has finished with the bottle he seems so much more satisfied and full (his tummy even feels full to me and looks fuller, if that makes any sense!) So it makes me feel bad too that for over a month it may be that he hasn't been full. He is such a happy baby, he only cries when he has a poopy diaper, he's hungry, or bored! And I have started to figure out the differences in cries, it's amazing how they can communicate even though it can be hard to catch on to what exactly each cry means and when you hear a new tone of cry you have to distinguish what that means. We also had to go to the hospital yesterday and get a nasal suction done. I didn't like that and was close to tears because they made me hold him down while they stuck a hose down his nose and sucked all his boogers out! They are testing him for potential viruses. It's been a long week and I am just hoping for good news tomorrow, even though I hate getting my hopes up for fear of more disappointment. Also, Daddy got to feed him for the first time! It was so cute. Here are some pictures:

The Dr sucking out the boogers while I hold him down. Sad. I know. He was screaming. 

Daddy feeding Maximus

The 2nd pair of pi's last night. He had his 2nd blowout! And afterwards he was wide awake. 

All snuggly ready for bed!

He actually enjoyed tummy time today and fell asleep! I was so proud! 

Here is a video I took of him last night. I had to put it in two parts because my phone that I took it on wouldn't let me email it in a longer format. 

As for me and Tony, we are doing well. Adjusting to life as parents! It's exhausting but totally worth it! I love my Maximus and so does his Daddy! Also we would like to Thank those who've still gone out of their way to bring us or make us dinners. It is much much appreciated! We love you all and all the meals have been delicious! Also a special thanks to my mother and mother in law. Words will not express the feelings I have towards having you around. I am so grateful and blessed to have both of you to tote me and Max and all his equipment too and to be here in my home helping me with daily tasks the last 6 weeks. I couldn't have done it without you and I am forever grateful for you. Some do not have the luxury of having your mom or someone close to tend to your every need and help you with being a first time mom and I am so happy that I get to have you both! I love you! 

Update: Good and Bad

We went to the cardiologist today, we were suppose to have gone last Monday to see him but long story short we got there and they had changed our appointment without telling us. I was a little upset to say the least. Anyhow, today we received good news and bad news. The bad news is he has to go back on his oxygen for two more months. I had taken it off of him last week because our pediatrician told me he didn't think Maximus needed it anymore. Today the cardiologist told us that Max still has Pulmonary Hypertension and he will need the oxygen for the next two months to see if it will clear up. Also he said that the hole in his heart (which I didn't even know about, I knew he had the one that all infants have at birth but is suppose to close off after a few days. But I didn't know that Max's was bigger and different. It's called an ASD.) Max's hasn't closed all the way and may not ever close but they aren't worried too much about it because it is so small, if it were a big deal they could surgically go in and close it, which I wasn't too excited about. So I'm hoping it doesn't cause any major problems. Also, a major concern is he hasn't gained weight. He is only weighing 7lbs 4oz, which is his birth weight. I was a little emotional over this and I am a little worried. I'm hoping its because he is so active and he is fighting so much. The cardiologist called our pediatrician and got us an appointment tomorrow to start trying to figure out why he is not gaining weight and what we can do about it. He said we may even need to spend 24 hours at the hospital to run some test on my breast milk and to do some test weights on him, meaning they will weigh him, then I'll feed him and then we weigh him again to see how much he's really eating. I thought and still think he eats really well and gets enough but maybe because while in the NICU he was on a feeding tube for the first 4 days he was getting the same amount every time and now he's on his own and maybe he doesn't get as much as he should be. Also he is a very gassy baby, always has gas. So I'm wondering if he has too much air in his tummy while feeding and he thinks he is full, so it stops him from getting full with nutrients. I don't know, just things I have in mind. I'm hoping to get some answers and solutions tomorrow! And I am hoping he will start gaining weight! He's grown 2 inches though! That's the crazy part! 

Anyways, thats a little update on our Maximus. He is still so much fun! I love him so much. All his cute noises and he is smily a lot! Especially after I feed him, he looks at me and just smiles and smiles! I need to do some more video of him and post that so you can all see what I see everyday! Here are some photo's I wanted to post! I also fixed the photos in the post below....

Getting an EKG (Electrocardiogram)

We had to hold him down to get him to be still

Getting another (3rd in his almost 6 weeks of life) ECHO

He pretty much slept through the whole thing!

The Dr that did the ECHO (He's actually done all three of them on Maximus)

This is a picture of him falling asleep in the bath, He loves his bath time! It will be harder now with his oxygen to give him a bath every night.

He did the laundry with me today and fell asleep on the warm clothes out of the dryer, it was so cute!

I will post tomorrow on what the pediatrician says, wish us luck!

Sorry for lack of updates!

I promise a more detailed update later! But for now, here's s few cute pics from the last week! I love this little man!

4 weeks!!

My sweet boy is 4 weeks today!! I cannot believe it. He's getting so big. Remember the outfit he came home in? It drowned him!! Now it fits. It's crazy how fast they grow. I already miss him being so little (I know he's still little, but he's getting big to me). I love him so much. I can't get enough of him! Tony is so cute with him too and when he comes home from work Maximus knows its daddy. When I have Tony on the speaker phone or FaceTime Maximus looks around for him. It's so cute. We go to the cardiologist on Monday and we are praying for good news. Over last weekend Max's heart monitors charger decided to quit working so we called and got a new one and they downloaded the information from the one that we had for 3 weeks. Today I had to run to the pediatricians office to get some papers signed for Tony, and while I was there he told me that the results from the download were normal and nothing was out of the ordinary or a concern! I was so happy! He said that he feels like he doesn't need the oxygen anymore. So we will see what the cardiologist says on Monday and hopefully he thinks we don't need to keep him on it too. It will make it easier but harder at the same time. I don't worry about him as much because if he stops breathing or his heart stops it tells me. But without it I think I might be paranoid all the time. I hope it will be ok. I'm sure it will but I'm a mom now so I'm entitled to worry!

Beach House

So the majority of you chose the right Gingerbread house! We did the beach house! But we were shocked to see that we won again this year. We thought the other two houses gave us a run for our money. The Harry Potter house was done by my mom and my brother Stitch. And the Twin Towers were by my sister Skipper and her boyfriend. They did an awesome job! Better luck next year I guess. 

We also went to Max's dermatologist appointment over the weekend and got really good news! The dermatologist said he has seen 11 cases of Goltz Syndrome, ALL of them being girls (I think he was a little shocked and weirded out that he was seeing a boy). He said he is 99% sure Maximus does have Goltz Syndrome and that he has a pretty mild case of it... meaning he is 90% normal 10% Goltz. His biggest challenges will be his cosmetic surgery for his foot and hand, and his teeth. His skin actually is not going to be a huge deal according to the dermatologist. He will have irritations all his life but they won't be as big of a deal as most Goltz patients. He said all the cases he has seen, the mothers are up 24/7 taking care of open sores and wounds and they rarely heal. So I feel pretty lucky! I'm so happy to hear this good news! He also told us that he should be able to learn just fine and no mental retardation from what he can see. Now, I know this is a dermatologist, but he was very knowledgable and seemed very informative. He said Maximus is doing great in all aspects, moving normal, breast feeding and acting like a newborn should and that indicates that he should not have brain damage. We see the Cardiologist next Monday to see how much longer we have to keep the little guy on oxygen. Then also we finally got in to see three Dr's at Shriners Hospital up in SLC to see to his foot and his hand. They won't operate until after he is a year but they will see what needs to be done until then. So exciting to hear that too! Maximus is doing so good, and I am so proud of him! 

I could just watch you sleep forever