Tuesday, March 27, 2012

All clear..... For now!

Update time!! So Friday I got a bit freaked out since baby Eddie's fontanel seemed a little puffy and his shunt site was really puffy, plus he was really cranky that day. So I called the neuro and waited impatiently for 4 hours for him to call me back! Apparently it's normal for this to happen a little especially if he is fussy and crying a lot.  He assured me that it would go back down and he was sure that if the shunt was malfunctioning the CSF buildup would go to his back first. Which I've been told before but everything worries me lately.  He told us to bring him in on Monday just for a real quick check just to ease all of our minds. On Saturday our neuro happened to be eating at Eddie's restaurant and mentioned to him that he spoke to me (that's what Eddie says happened, I got the feeling though it sounded more like this, Neuro- "I spoke to your wife yesterday about the baby" Eddie- "Yeah, she's crazy...") By Monday it seemed much better and he agreed when we saw him at the office. He did assure me that I did the right thing and that we will probably be making a lot of these little "just check him" visits over the years. I think we're going to have quiet a relationship with our neuro, Eddie and him are even on a first name basis.. I can't quiet get used to calling our amazing neurosurgeon, Rob.

Today was his head ultrasound and for a minute almost a dramatic one.  All was going well until the end when the tech took a pic of the shunt in his head and underneath it typed "SHUNT ?" "?" What the hell is the question mark for??? Then she left the room and said she was going to get the doctor. WHAT?! The moment she left I started freaking out inside and even a bit on the outside. I think my exact words were what the hell is the question mark for? After what felt like forever the tech came back in with two doctors, not one but TWO!  I then asked out loud, "Is something wrong with the shunt?" to which the tech responded "I'm not allowed to answer that." What? Jesus! Then neither doctor said a word and after I finally got up from my chair and stood near him did he respond by telling us that everything looked great and his ventricles were beautiful. They just couldn't get a good picture of the shunt from where it was placed. JESUS! Way to keep us hanging. He did apologize probably because he saw the look on my face since I was feeling like I was about to wring his neck!  Needless to say everything was great! Thank goodness!

We then headed over to plastics to have his stitches removed from his back, FINALLY! 6 weeks later! I'm glad we waited though since it gave his back time heal fully after the horrible swelling thanks to the CSF.  His back looks amazing now that the stitches are out. I can't believe how good the scar is. Weird to say that but I've seen pictures of other babies scars and none look as good as his! Apparently we lucked out with an awesome neuro and an awesome plastics guy! So we have a little break from visits now to our clean bill of health. We see the pedi neurologists tomorrow and hopefully another all clear there too!

We also had our photos done again today. Our first family photo and baby Eddie's first "photo shoot"! The photographer Ian was so great! Got some amazing pics. Here are a couple we already get to see! The one of baby Eddie naked with his scars showing is my absolute favorite, reminds me of everything difficult and beautiful we've been through. It's amazing. To see more of Ian's work check out www.nemesisphoto.com

Monday, March 19, 2012


I'm so sorry that I've been a bit MIA lately, I have no excuse except for I've just been so unbelievably tired that at the end of the day I am just ready to crash!  Let me try and catch up the past couple of weeks....

After we left the hospital Baby Eddie's back was still pretty swollen but about a week later it finally looked amazing! I mean totally flat! I couldn't believe it we hadn't seen it like that EVER! Not even right after surgery. His fontanel looks amazing too, completely flat! I'm so proud of my little guy.

Friday we went to Shriner's Hospital for Children to meet with the doctors of the SB Clinic. We met with a TON of doctors from PT to Nutritionist to Ortho and more. It was about 13 people! It was great though, to meet with so many people and get such great info! Also, in the NICU his clubbed foot was pretty bad and they were pretty sure he'd need casts for his legs. When we went to Shriner's they've decided that at the moment he won't need any casts or anything other than PT. YAY!! His legs look so much better. They are concerned about the tendon in his ankle on the right foot that controls the muscle that flexes. It is very tight and his calve muscle (which helps the foot point) is very weak. The left foot is similar but not as bad and his left calve seems stronger. This causes him to not be able point his feet so they are always flexed.  The solution would be to cut that tendon in his ankle.  The problem with that would be that his feet would ultimately be floppy and he would need little plastic braces on his feet for his shoes in order to walk.  Big deal considering they didn't think he'd be able to walk.

Although our plan is to continue to work with a physical therapist that will come to the house and work those muscles and tendons and hope that his feet and legs continue to get better. I know they are doctors and know what they're talking about but 3 weeks ago they thought he couldn't feel his foot, and he had a clubbed for that they were talking about casts for.  Look at him now only 3 weeks later! I figure PT can't hurt. 

We've set up to have early intervention to come to the house and work with him weekly or every other week to track and help with his development.  Just to help us stay on track reaching his milestones.

Today he made his first "sound" on his own.  He has made sounds before but this one was on purpose.  Bella kept saying "Hi baby Eddie, Hi!" and he kept trying to say hi back! I know that sounds crazy but I swear he did!! It sounded more like a "Haeiw" but he was trying to say hi! LOL I know you don't believe me but I will get it on camera and you will believe! No one believed me when Bella started talking at 3.5 months but she did!

I have also realized today how much he looks like Bella when she was a baby. They're like twins!

I've posted some before and after pics of his back and some pics of where the shunt is.  They can seem a little graphic but they're his battle wounds and I'm proud of him and them!

 Before shunt
 After shunt

Wednesday, March 7, 2012

Another night :(

Last night went ok, he was pretty uncomfortable so he woke up every 15 min or so and cryed a bit before I could soothe him back down. He ate pretty good all night but at around 7 he took a bottle and was really fussy the whole time. Right after I was giving him his tylenol when he vomited all over me him and my blanket. When I say vomited I mean vomited! I had to change both mine and his clothes and everything.  Well learned my lesson that time. Don't feed a fussy baby 4 oz!

Thankfully that didn't happen again, he did spit up a bit but what's new.

Unfortunately his back did swell a bit overnight. Which basically just means that the CSF is looking for the path of least resistance to get out. Because of this they are keeping him another night to watch it. They are hoping if they don't drain it again then it will eventually head back up to his brain where the shunt will drain it correctly.  If it doesn't then they will have to do another surgery to drain it with a needle. The problem with this is a chance of a fisstula <--sp. could form and the CSF will keep draining to that spot.

So the good news is we've been transferred to the regular pediatric ward which is much quieter and a semi more comfortable bed type thing. Anything has got to be better than the chair in PICU. So far he has a room with no roommate. Hopefully it stays that ways!

So hopefully we go home tomorrow but no guarantees.

Tuesday, March 6, 2012

Surgery #2

So before we left this morning I gave baby Eddie a little sponge bath. I gently wiped his incision to get all the junk off a small piece of stitches came off on the washcloth.  I checked his incision and everything looked ok so I didn't think much of it. When we arrived here at the hospital and was getting him dressed for surgery his back was soaked and he had a clean diaper.  We quickly realized that the CSF that has been draining into his back had started leaking.  Well good thing we were here to get a shunt.

His surgery went very well they placed a VP shunt on the right side of his head behind his ear and the tubing is very long and goes down his right side to his stomach and the CSF should drain there and be absorbed by his body. The neuro said that it drained great right away which is a good sign and he also removed 30cc (about one ounce) from his back to help alleviate thdt pressure and hopefully prevent any further drainage.

The plastic surgeon will see him tomorrow to check his incision and over the next few weeks they will watch it to see if it may need to be reclosed. This may need to happen if it leaks more in order to prevent infection or if there's too much loose skin after the swelling from the CSF goes away. They would reclose the incision to make it look better. Fingers crossed this won't happen since that would require another surgery and infection risk.

He went to recovery from surgery where we were able to be with him. One thing they should tell you before you go in there is that your child will be very pale and look kinda comatose.  I took one look at him and my stomach dropped. Then he cried and turned red, thank God.

He's in the PICU now and although he does seem a bit uncomfortable from pain he's been pretty content. He has had a little fever but they think he may have just had too many blankets and was too warm.  They're gonna check him again soon and let me feed him a bit.

As long as he does ok tonight they will send us home tomorrow. With lots of instruction I'm sure.

Thank you for all the kind wishes on here and on Facebook. I'm having trouble keeping up with everyone and saying all our thank yous. Also, I know a lot of people are asking for updates if possible if anyone hears of someone who would like an update can you give them the blog website and I will do my best to keep it updated!

Sunday, March 4, 2012

Long weekend!

What a stressful few days it's been.  The past few days have been quite a emotional mess for me. No reason in particular maybe just the lack of sleep and stress is catching up with me.  Not to mention I am constantly worried about the CSF (spinal fluid backup) in baby Eddie's back and head.  In between feedings, changing diapers, cleaning up the house and all the other household stuff I've managed to cry every chance in between. Thank you postpartum hormones!

We headed out to the ER last night because he was more fussy than usual and his head and back both seemed more swollen than it did Thursday and Friday.  I really just called the neuro to see if there was something I could give him to make him more comfortable but there wasn't anyone on call so we headed there to have a neuro look at him.  Luckily it was quiet (which is extremely rare for the trauma center on a Saturday night at midnight) but thankfully it was and we got speedy treatment.  They weren't real concerned about his back and head they say unless his incision is leaking CSF then he's OK to wait it out until Tuesday. Also because his fontanelles (soft spots) haven't closed yet his head can take all that swelling without any damage or effect to his brain.  So, again I'm learning to have patience.  Not my strongest ability.  They did give him a bit of Tylenol to make him a bit more comfortable just in case.  We're heading to our appointment with the Neurosurgeon tomorrow and will hopefully get more info about Tuesday's surgery and we also have a Pedi appointment which I'm excited about since we get to see how big our little man has gotten!  I'll update again tomorrow with more info about Tuesday.

Thursday, March 1, 2012

Another small hill to climb!

So got some not so happy news today.  All week I've been watching that incision site like a hawk and kept saying I didn't like the way it looked. I even mentioned it a couple of times in the NICU. Everyone including our pedi told us it looked ok but both Eddie and I just didn't feel right about it, it looked so swollen. So I impatiently waited for today's head ultrasound and neuro appointment. Our regular neuro was off this week so we met with another neuro at the practice. Apparently his ventricles in his brain have become more enlarged since last week. Also he agreed that his back incision shouldn't be that swollen and it's from the fluid draining down. His recommendation was to set up surgery to have a shunt placed in his brain that will drain spinal fluid to his stomach.  The surgery takes about 1-2 hours and he'll have to stay in the hospital for a couple of days. I'm hoping he's in the PICU instead of the NICU this time. That way I'll be able to stay with him.  I'm also going to get some information from Boston Children's from a Dr. Warf. He's the best and also performs a proceedure called ETV. It's an alternative to a shunt. He's the only doctor that does it in children this young and has done a ton. No final decisions will be made until Monday when Dr. Shapiro (our regular neuro) will be back. The doctor we saw today didn't want to make a decision for him.

So today's been a tough one and a bit stressful and anxiety ridden. So I'm asking everyone to keep fingers crossed and send positive thoughts for baby Eddie. I also want to thank everyone for the support we've already gotten. We are so grateful for all of it!