Saturday, November 27, 2010

Day 27

Sorry I haven't been keeping update with everything that is going on it's so hard! 

BUT, he had surgery yesterday because we found out that the throwing up was because of pyloric stenosis. Which means the muscle between the stomach and the small instine was thickened. Because of this thickening the food can't empty out which causes the baby to throw up all their food. He was severely dehydrated which he went from the high of almost 7lbs to 5lbs13oz! 

So he did good and got his G tube. It'll be around MONDAY before we are able to start him on feedings than we can learn how to use the tube. So exciting. Today he looked so awesome. So happy. Anyways off to bed

Thursday, November 25, 2010

Day 25

So tomorrow he goes to an ultrasound to see if something is thickened. I don't remember what it's called but it MIGHT be the reason why he's spitting up if this is thickened. So we find out tomorrow if it is and if it's not they are going to change his formula and keep trying that. I'm kind of hoping that it is so monday they can go fix it along with putting in his G tube. At least we would know what is wrong and fix it so it wont happen again! But if it's not that than we got to try a bunch more stuff and keep GUESSING. Ugh. So frustrated right now is all

Sunday, November 21, 2010

Day 21

Oh so frustrated! Since he's been put up to 53mLs he has been spitting up so freaking bad. The past few times has been half of his feeds! I want to cry because this is what is stopping him from coming home. Stopping him from spending thanksgiving with his family. I got to go visit him and everyone else on thanksgiving. I don't want to visit him in the hospital. I want him to be with us in his car seat spending the holiday with his family. I'm so frustrated. I feel so weak right now. 

I feel like our family isn't complete without him here. I want Justin to start getting use to his little brother.  I want to be able to feel like a mother of 2. I hate visit him in the hospital and spending an hour or two with him. It's not fair to him. It's not fair to us. I want to enjoy my baby boy! Ugh. Sorry for the long vent

Thursday, November 18, 2010

Day 18

Sorry that I haven't updated in a while. Not much has changed he's being fed 3 times a day now! It's amazing. Today he did 20mLs but spit up a lot of it. We haven't been told when he'll be released but we've been getting info for ssi disability. He was so alert yesterday! I'm so happy. Today he was sleepy. I asked the nurse that is taking care of him if I'll be able to nurse he said he'll find out for me. He didn't know with Austin's gag reflex if he'll be able to or not but he's never taken care of him before so he said he'll ask and get word to me!

Sunday, November 14, 2010

Day 14- He's 2 weeks old!!!

I can't believe that my little boy is 2 weeks old. Well in like 51 minutes! He has no PICC line in any more. So he has his feeding tube in his nose. He had a feeding last night at 9 and this morning and only was able to take 6mLs. He didn't have a gag reflux:( But it's alright. In time perhaps he will learn. I went to the hospital today with dad, mom, grandma kiyo AND Justin! Justin was jealous of dad holding Austin but it's alright. Not much more to update right now.

Saturday, November 13, 2010

Day 13

So I hadn't updated yesterday and I'm sorry. So Austin is in a big boy bed. Off his H2O! oh and today he took 30mLs of milk by bottle!! omg he's improving so much. Yesterday we talked to the neurologist and she said that her only concern is that he doesn't ALWAYS have a gag reflux like he should. Which means he cannot protect his airway. Which could cause him to choke during a feeding. Occupational therapy is going to be working with him soon twice a day to do a bottle. But they are waiting for a bit.

Thursday, November 11, 2010

Day 11

So today I called to see if they had the results from the EEG (See's if he is having seizure activity or not) and it came back negative! It doesn't mean if he comes off his anti seizure medicine he'll be better but means the tremors he was having wasn't seizures. AWESOME! OH and more good news!! He took 13mL of my breast milk by mouth today. They had to do the other 12mL by his feeding tube but small steps. His sucking is still a bit weak but they said they've been having him practice with his pacifier! So good news so far:)

Wednesday, November 10, 2010

Day 10

So today I got to go see Austin again. It was emotional for me because I've been looking at all his baby stuff that I have for him. He is doing good though. The results from the EEG weren't in so I will call tomorrow and hopefully get results. Also hes eating 25mLs now. They will try to do bottle feedings starting tomorrow! lets hope it goes well... oh  and the heating is off! hes keeping his temp for now and might be moved to a crib!! BIG steps yay!!!

Day 9

So I got to see Austin yesterday. They are running an EEG and hope we find out the results soon. I'm going to call to see if there are any results they said they might not find out today but it might be tomorrow till we find out. Because of it I didn't get to hold him. Hoping to hold him today because I want some of the kangaroo care so maybe I'll be able to get more milk in. I've been trying so hard to pump but having some trouble need to go during the day to talk to the lactation consultant again. But got to wait till Monday till Alex is around. I'm getting real frustrated with it. I just want to hold my baby right now and be able to bring him home. I seen more babies going home yesterday and broke down crying. 

If I did not want my VBAC (vaginal birth after c section) if I hadn't fought my doctor so bad about it he wouldn't of been so bad off. It's my fault. I wish I would of just taken the c section at 39 weeks. I have so much self guilt right now it's not even funny. 

Monday, November 8, 2010

Day 8

So I didn't get to go again because I'm still sick but my dad went to go see him. Plus my husband and mother in law. Baby steps but good baby steps! So he was moving a lot more. The nurse even commented that he was so different than yesterday! He SUCKED on his pacifier!! Alex made me a video I could watch it he was moving and pushing against their hands with his feet. Oh and holding their finger! They said he's doing so wonderful. They are even thinking of doing a bottle soon. They upped his feedings to 12mL. And thinking of upping their feedings again! I better keep on pumping. It's hard to keep up with him! He's 6lbs 13 oz which he was born 5lbs6oz. So he's getting to be a fat man!! Hoping tomorrow Justin and I feel better so I can go see my little man. 

Day 7

So I did not get to go to see Austin today. After we all went on Day 6 which was Saturday Justin got sick. We had to bring him to the children's er because he couldn't keep nothing down and threw up 23 times. My poor guy. On Sunday which is day 7 I started to feel sick and throwing up also so knew I couldn't go visit my little man. I cried so freaking hard. Alex stayed at my parents house with us to take care of us. I was in no condition to be able to take care of Justin on my own. This virus sucks so bad. 

So Sandra, Dad and mom went to go visit Austin in the NICU. He was opening his eyes!!

Look at my handsome little man! He WAS having troubles pooping but grandma Irene got to change it  lol. And let me tell you she said she wish she didn't!!:) Anyways he had a bit of a gag reflex today also. Good news all around for today besides us being sick. I won't get to see him on day 8 either because of us being sick. Don't want him to get sick for any reason.. 

Day 6

 So we went to see Austin again and we brought all of our family. Including Sandra (my brother's girlfriend) Stephen (my brother, Uncle Mel, Lea Ann (Uncle Mel's girlfriend), Aunt T Grandma Kiyo, Nanny, Daddy, Alex, Beth and Nick (Beth and Nick are the boys god parents) so we had a lot of people with us to see our little man. He was wiggling around soooo much!

Friday, November 5, 2010

Day 5

So today we went to the hospital today he has a catheter now which was sad thinking about it. I thought about when I had to have one how much it hurt but thinking about my little man having one breaks my heart! They are trying to get his sodium levels to a good spot but when they do that he won't pee so it's hit or miss it seems when it comes to it. If his sodium levels are good he won't pee so they are trying to get it even. They tested his gag reflex and he gagged a little bit!!!! So there is hope. The neurologist that I spoke to today was hopeful and so was his nurse betsy. So it was great.

They will be doing an ultrasound of his heart soon they don't see anything wrong with it but they want to make sure since he had all these problems that he doesn't have anything else wrong so they are giving him the whole work up. Justin got to touch his little brother. And Austin RESPONDED!!!!! He started to move around today and the nurse said he's been more responsive towards things. Still not opening his eyes but that's alright. It's only day five of this little mans life.

Tomorrow my whole family is going up there. My brother is in town from San Diego on leave, his girlfriend, my nanny, aunt, cousin, my uncle, lea anne, grandma kiyo and of course us are all going down there to see him. Oh and my daddy. My mom is going to take care of Justin and my cousin since my cousin can't go in. Hope to hold my baby boy tomorrow.

Having a hard day today I really want my baby boy in my arms. It's my first time home since I had him and seeing all his stuff around makes me hurt. I seen his bassinet and ebgan to cry. I seen his swing and bouncer and want to be putting him in it. I want my baby home and wish it was before thanksgiving.  I don't see it happening but really hope before christmas. I have a lot of people praying for us and so glad we have so much love and support from everyone. I know mom, dad and our friends are sharing our story. Thank you guys for those who are praying for us. We appreciate it. And I'm glad you are reading about our little bundle of joy. Thank you again.

Thursday, November 4, 2010

Day 4

Today was day 4 of him being alive. What a tough life he already has. He is such a strong boy to be able to withstand what he's been through. Not only that the challenges he will have in his life but all the poking and the prodding he has to go through daily. Not EVERYONE could do that. I spent that night at my parents last night so that I can rest and be able to take care of myself. Let me tell you how many times a day I hear from my parents, hospital people, my mother in law and just from people in general 'you need to take care of yourself so you can take care of those boys..' I know this. I'm just so use to doing it all that I try to do to much. We got there about 10:30am or so. We thought we would get there early so we could spend time with our little family and than at 1 we were going to talk to the neurologist. No big deal, right?

We met someone there and decided that we'd take our time spend time with him so on. So I went back with the two people we were with and than since they are close to Alex I let him in and decided to take over the Justin duty. The nurse Ginny told us that the neurologist wouldn't be there till FOUR! UGH! We thought it would be hard to keep our 21 month old occupied for a few hours from 10:30am till 1pm when they were having our meeting. I had no idea. So we decided to stay and went down stairs to eat subway. We ate and talked with our vistiors and my parents said they were coming up there with my grandma Kiyo. So I'm like we'll stay instead of trying to find something to do. 

So the three of them show up when our visitors were leaving. They all go up to see him and I spend more time with Justin. I than find out that the lactation consultant is looking for me because she called me and had been looking for me when I was down getting something to eat. Apparently my son was ready to start feedings by tube but they needed breast milk! I hadn't brought the stuff I had EVEN THOUGH it was very very little they were only starting him off 3ml through his tube every 3 to 4 hours. So I did that and got to Kangeroo care. At 4:10pm finally the neurologist comes down so Alex goes and gets my parents and his mom from the waiting room. Leaving Justin with my grandma for a while. 

So the neurologist said that it looks like there are several parts of his brain that are effected by the damage. We had thought it was moderate to light damage but it looks like it's moderate to severe damage which we hoped didn't happen. So that means that he will have delayed movement and so on. She said she can't tell us if he won't be able to ever walk or anything like that. We can only tell that in time. And part of the brain that was damage also could be why his gag reflex isn't working properly since the brain has to tell you to swallow.. She said in the next week we will be able to tell more! 

He also had 2 dry diapers and 1 diaper that had 3 tsp of pee in it.. Not good:( So she was going to have to cath him. Poor guy. That's update for now..

Some on his condition

A lot of people's first question to me is: Is he going to live? To answer that, yes he is. You need not worry about that right now. My son will live. His conditions and the things that are going on with him right now are scarier than death though. He is barely 3 days going on 4 days old and he has had a tough life. A lot tougher than mine. Yesterday they did an EEG (Electroencephalogram- is a test that measures and records the electrical activity of the brain) for 1 hour. They usually do this for about 12 to 24 hours but since they were worried more about the MRI (Magnetic resonance imaging - is a noninvasive medical test that helps the doctors and see what is going on with the brain.)

I do not know all the results of both the test we will be going to the neurologist. His primary doctor that's been taking care of him and I talked on the phone yesterday. Previous to this conversation they had mentioned about fluid on the brain, his body was tense because something happened with not getting the nourishment he needed for a bit in my body and also that he was having seizures. What I got from the short conversation was this:

His whole brain was effected by lack of oxygen. She was unable to tell me how long. I do not know if they could ever tell me. I do not know what causes a lack of oxygen while in the womb so please do not ask me. I'm going to ask them and perhaps if they do know that I'll say something. But I think some things go unknown about some conditions. With saying this we will find out what challenges he will have in life after we speak to the neurologist. I guess they will be the only ones who will be able to outline what we are going to be going through. 

Also he has little to no gag reflex. So he isn't able to take breast milk or bottle for right now. Which means he is being given IVs with electrolytes (since his levels are down) and fats so he'll be able to gain weight instead of loosing it. We do not know if he will develop one or if he will be fed through a tube or not. So they said he will be getting a G tube so they will be able to give him food/liquids/medicine through it. This also will allow him to come home quicker! I'm hoping though he will at least develop the gag reflex so he'll be able to have some kind of normal in his life. 

It's a lot on my plate right now but Alex and I talked and it looks like I'm going to be a stay at home mom or work a day or two at a time here and there. I will be needed to take care of the boys and especially Austin. The next week or so we will see what they say. I can't believe my little man is 4 days old and he's gone through so much. He is still so helpless! I feel so bad for him. Thank you guys for the prayers by the way

Wednesday, November 3, 2010

Our Beginning

When I was pregnant I had no issues while pregnant. I was so happy that we were going to have another little boy. I was so excited that we were going to be parents of 2. I always wanted a large family even though my husband wasn't to fond of it he agreed perhaps we will try for 3 or 4. We would see down the line. I did not know that perhaps these dreams would not be happening. Not because they couldn't but because my dreams would change. I changed. The moment I changed was when I had my little boy Austin Carl Eckstein on October 31st 2010 at 11:55pm. He was born 5lbs 6oz and 18 3/4 inches long. I was hoping for a vaginal birth but god had other plans for me. He decided that my body would not do what it was suppose to do and I would go via c section.

I have had a c section before so it was no big. I knew the recovery would be long but worth it. My little man was worth anything I had to go through. When they were doing my c section I knew something was wrong. I started to freak out. They had to give me medicine but it worried me that NICU was there and I didn't want another child in NICU. I wanted to avoid it. I did everything I was suppose to! He was wheeled away to the NICU. My hopes were dashed not only did I have a c section but my son was going to the NICU. I wouldn't be able to have him in my room. I wanted to be sleep deprived because of midnight feedings and the complications normal mothers had while they have their child in their room. Nope not me! 

I thought these would be my only problems but after so long I knew it wouldn't be. But here's some photos of my little man!