Friday, February 24, 2012
The night before we left the NICU we were able to meet with the neurologist about how he's doing physically and how things are with his brain. We were finally able to understand a lot of where he's at. We won't know everything for a while but we know a bit. First off the nerves in his legs seem awesome! He seems to have full feeling all the way to his ankles (and his legs are very strong!) He is bow legged and they will fix that at Shriners. They feel that his left foot is a bit clubbed but it does look better than it did so they feel that may be a muscle issue and not a bone issue (which is great news) that means that with some OT/PT and massage plus the casts they'll do at Shriners it should be an easy fix. He also has feeling in that foot. His right foot seems to hyper extend up in a flexed position all the time. Also seems to be a muscle issue so another good fix. The neuro did a prick test (pricked him with a safety pin) to see if his foot reacted and he didn't seem to think he has feeling in that foot, but Eddie and I have both seen his foot react to tickle or a prick so I think he just didn't react that time. We're hoping he has feeling in both feet but if not it doesn't seem like it will affect his ability to walk OK. We also discussed the Chari II Malformation. This is the whole spinal cord being pulled down thing. He does have Chari II which we kinda already knew. It also looks like the part of the brain that sends signals between the left side and the right looks thin. We don't know what affect this will have until we start hitting milestones but children with this can have disabilities anywhere from a sight learning disability to a severe mental disability or seizures and more. There's just no way to tell. We just have to keep an eye out for signs. Also, as of now there is no sign of hydro. Which is great news! We'll have head ultrasounds every week just to check up too. So for the next few weeks we have A LOT of appointments. Neurosurgeons, Neurologists, Pediatrics, Ultrasounds, OT, and Shriners.. Good thing we live two seconds from all of those!
Things are going great, feedings are a bit difficult right now since after having a mixture of bottles and breastfeeding and formula and breast milk in the NICU he doesn't really want to breastfeed anymore. I'm pumping but we're considering transferring over to formula since the doctors are concerned that he's not getting enough breast milk to help gain any weight. He eats about 4oz every 3 hours and I'm only pumping 2oz. He's lost a few ounces since birth which is normal but he hasn't been able to gain any back and he should be by now.
We saw the Pedi today and they think he's doing great. They are going to check him for weight when we go back for Bella's 4 yr appointment on Monday, so hopefully he's gained a bit. I think I've covered everything, if not it'll be in the next blog.
Saturday, February 18, 2012
So today I was discharged. (Sad face). Leaving without him is so tough but I understand that it needs to be done. I did head back around 3 to see him and feed him. Eddie came too and it was so cute he was more awake then I've seen him before and becoming more aware of his surroundings. He saw the light coming from the window and kept straining his head looking for it. He seemed to have really seen Eddie today too he kept staring at him with his eyes so open. It was awesome!
Here's a picture of those adorable eyes!
Friday, February 17, 2012
Today was a reminder that we have been so lucky so far. Eddie has been doing so well and sometimes even though we're in the NICU we forget what the NICU is really there for. Last night Eddie got a little neighbor. A cutie in the warmer next door. The nurse and I both even commented on how big and healthy that baby looked. Today we got our reminder. When I went down this morning to feed Eddie they were having a bit of a crisis with the other baby. Tons of people in scrubs looking all sterile and hovering over him shouting orders. Something must have happened they were traching him and xrays and a bunch more. Everytime I went down to feed Eddie they were still working on the little guy. Around 3 I overheard them speaking with his parents explaining the big downturn he took and that they will send him off to Boston tonight. Walking back to my room I kept crying thinking how lucky we've been with our little guy so far. All of our walking around feeling like we were in the clear this little guy was fighting to live. How easily our lives could have been different. I certainly hugged Eddie a little tighter the next time I saw him.
As far as updates, good news is the head ultrasound show no hydrocyphelus and they also did an MRI that showed the same. This is great news meaning as of now no shunts are necessary. Bad news is since he's doing so well they want to keep him here for a bit longer for observations. They will do another head ultrasound on Monday and Wednesday and will hopefully go home on Friday. The neurosurgeon did talk about his legs they are a bit crooked and one foot is clubbed and the other is (something I can't remember) but basically his foot like hyperextends upwards. Looks like its flexing all the way and some.
Tonight while my big Eddie and I were having supper we got a call from the nurse saying good news is he has a strong pee stream. This means he has good bladder function. He peed a huge stream all over the nurses. That a boy! His back is also a bit more healed so he can lay on his back a bit more which makes cuddle time so muxh easier! I even learned how to change his diaper while caring for his wound. Not easy btw! Headed down to feed again! Ill kiss him for you guys!
Thursday, February 16, 2012
So once again I'm still a bit drugged up so sorry if this post is a bit unstructured. We had a long night with me going down to nicu every 3 hours to try and feed. This morning the occupational therapist saw baby Eddie and evaluated him especially his legs/feet. I wasn't there but I will be meeting with her at some point during his stay to learn some exercises and stretches I can do with his feet/legs to help them straighten out. No matter what he'll need to see shriners after he's discharged from here. I will say he seems to be trying to stretch them a bit but not much.
His head circumference hasn't changed and is still 34.5 which is normal. This is great since one of the first signs of hydro is head circumference change. He will have another head ultrasound tomorrow morning to evaluate whether or not his ventricles have changed since Wednesday morning. We'll have a better idea of when we can go home once we know that.
As of last night he no longer needs antibiotics or pain meds. I've been breastfeeding him all day trying to help get him off the IV. Unfortunately my milk still hasn't come in (which despite my major hormonal meltdown still wont even if you lose your shit in front of strangers... story later in this post) so even though I keep putting him to breast to help get things moving he's also getting some formula through a bottle. He is hydrating so well that this afternoon they were finally able to remove his IV. Yay! He seems so much more comfortable now. We're hoping now that all the major stuff is out of the way he can soon move to the graduated nursery in the nicu with the babies that are a bit healthier.
So back to the meltdown.... I somehow forgot about that wonderful post-partum symptom of loosing your mind! So when it snuck up on me today lets just say I was not prepared. I started weeping uncontrollably and I think I freaked Eddie out and next thing I know the nurse was in the room trying to calm me with ice water and Popsicles. Then next thing I knew the lactation consultant (whom I've been waiting for since Tuesday) came in to help with my crazy. Once she left I had almost composed myself when the social worker came in to discuss all of baby Eddie's SSI info. I lost it again for no reason at all which at this point was now just funny. Ugh needless to say I'm hoping I can do a better job controlling my hormones tomorrow than I did today or they might keep me here on the mental health floor.
Again I want to thank everyone for the unbelievable amount of support we had from so many friends and family and even strangers. Thank you everyone, you all somehow shape a piece of us and have helped make us and continue to make us who we are as parents! We love you all and lets keep our fingers crossed for more great news tomorrow!
Wednesday, February 15, 2012
So yesterday I wrote my blog update while pretty drugged up. So I'm not quite sure how much info I got across. I'm still pretty drugged up since my lovely fibromylgia is NOT helping my pain recovery. I have a lot of info about little Eddie so I'm gonna try to get it all in before I pass out.
This morning we met with Dr Shapiro our neuro and he ordered a head ultrasound everyday to keep an eye on the ventricles in his brain. Told me I could hold him and even try to nurse! YAY! So of course that's exactly what I did, and what do you know he was a breeze to nurse compared to the horrid time I had with Bella. His scar and incision site look great.
As the day went on we received one good news after another. At lunch in the cafe Eddie and my parents ran into Dr Shapiro who said after looking at the head ultrasound it looks as though the ventricles are close to or at a normal level since surgery! This means if it stays that way through Friday then we're looking at a possibility of no shunt in his brain. If this happens they will want baby Eddie to stay a bit longer in the nicu for observation. We also found out tonight that bady Eddie is pushing his stool which means the muscles that weren't supposed to work are working and he has control over his bladder/bowel function at this point which is great!
So all of this is amazing and we are so excited! We understand that at any point things can change but this is a great start.
One drag is that he does have a clubbed foot which looks like it is affecting his leg. This is common in SB children and his doesn't look too bad. He will need to have that foot/leg casted and will need PT but this will happen once these other things are situated and we will go to Shriners here in Springfield. Probably after he's sent home. We'll also go to SB clinic at Shriners here within the month.
The staff here has been amazing and so helpful. I'm working on feeding him every 3 hrs to help wean him off of the IV. He is off pain meds and antibiotics so the only thing left is the IV.
My eyes are heavy and I'm going to have to catch a few zzzzzzz's before I need to head back to nicu for another feeding. So signing off and saying goodnight!
Tuesday, February 14, 2012
He's finally here! Edward Harvey Gagnon IV graced us with his presence at 7:59am weighing in at a whopping 7lbs 8oz! (Which is huge considering they thought he'd be too small). First thing Eddie told me after seeing him was "he's so hairy!" Too funny! He has lots of dark hair. He is perfect.
His surgery was started about 10:00am and finished about 4:30pm. It went amazingly his leison is extremely low and apparently the nerve endings that normally don't find where they're supposed to go in this type of SB, somehow found all the places they belonged even with his SB. This means physically he'll most likely be just fine! Just fine, I can't believe it! So now they'll be watching his brain and monitoring the hydro to decide whether or not he'll need a shunt placed.
I've never been happier! I've never felt luckier! I'm just waiting to go see him and love all over him. Thank you to everyone whose shown us so much love today! We love you all! Here's baby Eddie's first picture!
Monday, February 6, 2012
After our appointment Eddie and I got to go grab a bite to eat before we picked up Bella from school. I'm gonna miss that time where's it's just the two of us in the am. After we picked up Bella we headed to mom's for our maternity photos. A friend of mine Ian took them for us and I've only seen a few so far but they came out awesome! Thank god he's so good because being 38 weeks pregnant "pretty" isn't exactly the word I've been feeling lately. He did a great job! I've posted a couple of pics at the bottom of today's post and I strongly recommend you check out his site especially if your looking for a photographer www.nemesisphoto.com or on FB Nemesis Photo on FB.
Thanks to my busy day I didn't really get a chance to stay off my feet so lucky me I've been graced with those fun contractions tonight. Let me say they have been getting much more painful lately and that does not make me happy. So Eddie and Bella took a trip to his parents to work on his car and I stayed home to rest. So I'm going to go back to doing that (after I make myself a tasty milkshake, I gotta get them all in before there's no excuse to drink them everyday anymore) and cuddle with my babies when they get home!
Have a great night everyone!