Were finally home!

First night down! I didnt get much sleep between soph in our bed and not sleeping cause I neec to see that Aiden is breathing, thay was one of the plus's of being in the hospital, the alarm would sound if he stopped breathing so that was one new mommy worry I didnt have.

So off to our busy schedule and life!! Our little baby sophy is 4 today!! And I am so happy we made it home in time to celebrate!

Were going home!!!

So with a little bit of resistance I got the dr to let us go today instead of tomorgow!!!! We are in the car peeling out of the parking lot as we speak! Omg I am beyond excited and in shock!

April 28

So we had a good night, mo seizures since 6am yesterday. His levels this morning of the one drug was back up where it was before, which is good news, it means the doses hes on are controling his seizures and that he just had matabolized it faster causing the level to drop. If everything continues they are hopefull that we can go home friday, I however will not be getting excited until my baby is in his carseat and discharge paperwork in hand : 0 )

Then once we go home it continues and we will have quit a few follow up apts in a span of 4weeks time, one of which will probably be with a genetisist/metabolic dr so our lives will continue to be crazy but at least we'll be home and with the rest of the family

Update:

So meet with both the dr and the neurologist, so basically @this point, they have upped the dose of his meds and will check the level of the one, as it had dropped significantly,which could explain why after so many days of not having any seizures why now they are starting again. So tomorrow they will recheck the levels and make sure he is doing good on those levels... His eating is not as much of an issue today and if he continues should be good to go home, so @x this point the nerologist will check back tomorrow, well make sure his levels of meds are good and hix eating continues and see if they will let us go!!! But I am not even going to speculate or get excited until he is in his carseat with discharge paperwork... So one day at a time.

Im talking to them I am reminded that the tests we have done have all come back negative, which is good there are 4or so tests left that we r waiting on...

April 27, update

What a woldwind of a day yesterday, so at about 5 or so the head nurse came in to tell me the neurologist had just called and said that aiden had in fact had a seuzure durring his eeg. Thisg was apsoluitly devastating news and I just lost it... This of corse changes the plan for going home, they upped his dose of one of his seizure meds and then tested his blood for the other level. Then when mike came up he witinessed another seuzure. To finkd out hisb level of the, one meds were low wich could explain why he started having seuzures again., one one hamnd im glad this happened while we were still here but,am devestated it prolongs our time here.

With everything that happened yesterday I had finally hit my emoitional limit, and as guilty and horrible as it was i had to leave and go home for a couple hours. Iti was apsolutly the hardest thing ever, and ofb corse im crying, soph is crying, mia crying and mike is ready to kill someone , but we made it home and u got to repack my bag, take a shower in my own shower and sleep in my own bed for just a couple hours before I hafta get up and take mike to work, but it was a good mental break from the hospital and im feeling a little relief today.

So they have upped both doses of his meds and happily they havent seemed to affect him too terribly, ad the lne med can knock him out and I was afraid we would have to go back to the feeding tube. So thats a plus! Ive gone to mostly pumping and bottle feeding him so I can show his intake in numbers and not hafta worry that that one key could stall us from coming home. So the dr has set up an apt for us to sit down and talk to the neurologist this evening so we can get a better idea what their requirements are for usb going home.

I dont know how much longer I can do this

So the neurologist called one of the nurses and said she was reviewing the results of aidens eeg, he had a seizure so they will up his dose of meds tonight. This is devestating news and now there is no end in sight... I have to wait to talk to the dr and find out how long they want to observe him on the new med dose and whagt thos means for going home...but I know without asking that it wont be the promected tomorrow or thursday like hoped.

Frustrated

I am so frustrated! Im still waiting on the stinkin test results... And feeling like im just not a high priority... Then the nurse tells me the dr basically said it wont be tomorrow... He wants to see better weight gain... Ok really?? Then she basically says if I would give him a bottle durring the night it might help with the weight gain, and I just told her how im debating just feeding him a bottle ( breast milk) because that seems to be the only way for the drs to see how much and how well hes eating. They cant seem to wrap their heads around the fact that u cant measure the amount.... If he was a normal healthy baby all they lotok at at the 2 week apt is that they are back up to their birth weight... Which he is and has been...

A picture for the baby book

So little man leaked all over his cloths and so the very nice nurse went to get him some cloths, welllll being as we r in the nicu all they had for little boys are premie size... So the wonderful nirse was able to find him a pj set that fits him but it happens to have pink garaffs on it... Lol the start to poor aiden getting dressed in girl cloths by some girl... Poor little man dosent have any idea what hes in for!

And it starts lol

So after the eeg the nurse is nice enough to help me get his little head washed and he had his first pee blow out so sge brings me an outfit but because hes big all their cloths r premie size except for a cute little girly outfit! Lol probly wint be the last time someone tries to dress him in girls cloths : o )

The moment of truth

I am a serious wreck! They are currently doing the eeg that will ultimatly decide whether we are able to go home. Its so hard! I want to make sure hes well enough to come home, but I want to come home so badly it hurts!!!

Please god answer our prayers!!!

Please pray!!!!

They will do another eeg on Aiden either today or tomorrow and as long as there are no seizures and he continues to eat we can go home!!!!

April 25

So just sitting here waiting to hear from the dr what the nerologist plan is and when we might get to come home. As I sit her waiting aiden has decided to be awake and looking around ! It is so good to see him opening his eyes and looking around, ive also noticed w the daylight coming in today that his hair aglmost looks auburn! He also is trying to take aftet his sister and is trying to get his thumb in his mouth!

Big boy

So my little man is officially 10lbs 1oz and is already 11 days old! Whaaaa its going by so fast already!

Haha couldnt resist

My family

So my kids and hubby came up to visit again on their way home from easter... Its really great to see them but it makes it harder when they leave. You can tell this is taking a toll on all of them, and it makes it hard seeing that. I actually went with them in the car down the road to grab some tacos and it was the weirest feeling how sad! But I havnt been in a car for almost 2 weeks! Im hoping and praying that the nurologist says I can go home soon! I should have a better idea tomorrow...

Happy easter!

Today is a hard day, I have to miss the fun of seeing the girls faces when they see that the easter bunny has come... This sucks!!!! I also dont get to dress my little man in his easter outfit I had bought months ago...

I finally got to visit with my awesome hubby without the girls there interupting, it was nice but very hard to see my hubby struggling, I get to at least somewhat forget about the every day life stresses of kids fighting, housewlrk and bills and money, he however gets to deal with these things on his own.

Aiden has continued to do great, hes an eating machine! He even managed to pull his feeding tube out this morningn /: o ) I think thats his way of tellkng the drs lets get the show on the road/! He wants to come home!! A plus also is with all the poking and proding hes getting here he might actually be able to sleep amongst the crazyness once he does get home!

So everyone please pray we get to go soon!!!

So just a little humor

So ax im diwn in the cafeteria today I see the neurologist thats been taking care of aiden, so I decided to catch a sneeky picture. Is this scary to anyone elsee that the lady in cnarge of care for my son lolks ike this? Her purse she carries with her everywhere and it looks like something out of my girls room.... No people that is not a designer bag!!. And this picture is only part of it, dirty new balance shoes and unkept butch hair and kind of resembles a mouse... God I hope she knows what shes doing!!!

Another good day!

It has been a nice relaxing day, the dr checked in earlier and was impressed with aidens progress, I explained to him that aiden had heard him say it was gonna be a couple more weeks and decided he was gonna prove him wrong! So he said he will be pressuring the neurologists to start making a plan soon, as ultimatly its up to them when aidens readyn to come home.

I didnt get to see my wonderful husband today, I think this is all taking a very big toll on him, so instead me and aiden took a nap together : o ) its kind of nice the nicu had two sets of twins come in last night so they movec us to an issolation room, so it kinda feels like we have our own area.

Aiden continues to make great progress, he is waking up every 3 hrs on the dot starving to death, and is breastfeeding awesome! He is getting to the point where he is keeping his oxygen up while feeding and has even started going from onr breast to the other! Theb nurse said the next step tonight is to start trying to give him his meds orally instead of through the tube : o ) again baby steps to getting him home!

My little squishy

so hopeful good news, they are talking about taking the feeding tube out and just letting him eat when and how much hes hungry ahhn that will be soo nice!!!

Uhhhggg

I dont know if its the lack of sleep, the fact I hafta sleep in a recliner or what, but im sooo irritated, aiden starts showing hes hungry about 1/2 hr before "his time" so she says to hold out, so I do ... Then there is so much shit that they require before I can feed him, hes completly worn out tired and wont eat... So he ends up eat ok ng w the tube... Ahhhh I just want to have him better NOW so we can go home!!!

April 22

What a day! It kinda felt like a rollercoaster, aiden is doing good, only about 1/2 his feedings today were by breast, some of the time only by tube because he just would not wake up and eat. As I try to stay optomistic this is hard and and its kind of the feeling like watching a pot of water trying to boil... I just wish everthing would just happen right away so I can hurry and get home...

My husband is the most amazing person ever! He and the girls came up tonight and he packed everything including the boiled eggs and vinegar for us to color easter eggs with the girls . So we sat in the hospital cafeteria and colored our easter eggs : o ) it makes it just that much harder to haveb them leave tonight.. And it worries me how much longer he and I can keep this pace up.... I dont know what we would do without the help from our families and friends that have helped pick up the slack ... I just need everyones prayers that we get to go home very very soon

It just keeps getting better!!!

So my little squishy breastfeed!!!! No one ( including me) thought he would would be able to quite yet, its just a little more work.... But hes gonna be stubborn like his dad! He latched right on and went to town!! It is one of the many awesome best feelings ever!!! I have a feeling hes gonna show these drs whos calling the shots!!

April 22

So dr update this morning, little man is doing great! He continued to eat @his 3 hr feedings, wakying anf crying, man is it great to hear that!!! He has officially been without seizures for 2 days!!!!! He is at regular room air except when he is eating and forgetting to breath because hes so starving lol , dr said I can try breast feeding right away which makes me estatic!!!! The pumping is good at filling my time but just not the same. So without getting my hopes up, the dr said if things continue and he shows he can eat enough to keep growing on his own(because he tires quickly and falls asleep before he finishes what they say he should be eating, and if he continues w no seizures and on no oxygen than we may get to go home sometime next week!!!!! Things could always stall this process, and it also depends on what the neurologist thinks.... So today we take baby steps, try breastfeeding and continue to thank god for the progress were making!!!

Also I was of corse hoping and praying that the test they did yesterday for the b6 deficiency would be possitive and that would beb our answer, the dr hadnt heard yet the results but said he would go as far to venture that if that was the problem that they would already be giving him the medicine for that, .... This hurts a little because I wanted so bad for it to be such an easy fix but knew it was a very long shot....






These are pictures of him doing his eeg test and crying for auntie karlee!!! Such an amazing little man !

Ahhh what a great day!!!

So my little squishy did great today! He officially ate by himself 3 times today!!! Its not the full amount but im sure he will get there very soon!! They did his spinal test today and he cried and fought them the whole time it was great!!! I completly give him permission to be naughty for them! He is truly doing amazing today and im holding out hope that this pace continues we'll be home in no time!

Tests for today

So im sitting here as they are getting ready to do a spinal tap on my 6 day old son, mixed emotitons, hes crying and fighting with them wich makes me excited, but at the same moment it breaks my heart.... After they do that they will once again hook him up to the eeg machine and do a test for a super rare vitamin b6 disorder, at this point I am praying and hoping that this is what he has..... As it is easily treated.. So please please god have this be the key!!!!

April 21, 2011

So not more than 5 minutes after the dr left I started with diaper changing ( yes they still have me change his diaper ) and he was squirming around and didnt much like the cold wipes ( which is improvement as before he didnt even flinch) shortly after that he started fussing and actually crying!! I immediatly got my phone out between tears to video tape this event because it hasnt been since the friday after he was born that he has actually cried! Im sure the nurse thought I was loosing it as im video taping and crying my crying baby, she then proceeded to question if I wanted to feed him and what size nipple he had been using ( she is a new nurse who just came on @ 7) and between me being estatic I explained he hadnt been eating on his own yet, so we got him all set up and he started eating like someone had starved him ( as u can tell from pictures hes not starving) I cannot believe the joy this has brought to me today!!! Please pray this continues throughout the days!!!

So from here they have ruled out damage to the brain, problems w brain function, infections, virus, and the scary and heart wrenching part is now they start testing for rare genetic disorders, most of which these tests can take weeks to even possibly months to get results for, as these tests are rare enough they dont even do them in this area. So today tgey will be doing an eeg again and testing for a very rare b6 deficiency, the neurologist said shes only seen a couple in her entire career but its a test they can rule out right away, I am praying with all I have that this is the answer because it is easily treated...

So for today I hold on to the good news and stuff he did this morning and just take every little piece of good news and cling to that

Aiden Michael

So im trying this blogg app on my phone, because as I sit here I would love to start a blog for my litt,e squishy.