Home is where the heart is...here's our heart. 

And away he goes! 

Our home away from home... 

What's happening?? 

His walking shoes! 

Dad packing up! 

A sad goodbye with his "other mom" Michelle 

I don't want to let go! 

I'll miss you Heather! 

I'll miss you Dana! 

Thursday, 9/28

Well, it's Dinky Eve. I am in a state of joy, panic, elation, fear. I think that's a pretty normal place to be for any new mother about to come home with their bundle of joy. As I left the NICU today Patty, one of the other mothers, said, "Just think, Jen, it's your last day leaving without a baby". That took me back to 2/9 when I left Robert Wood Johnson after having my c-section. That was one of the saddest days, leaving the hospital empty handed. I had watched enough "Baby Story" on Lifetime to know that I was supposed to be tucked into my wheelchair with a tightly swaddled pink and blue burrito. So things are different, we're spending tonight putting up IV poles and organizing g-tube supplies, but the sentiment is just as sweet. He's coming home.

I have had a lot of protests about ending the blog and that support means so much!! I do feel the need to have closure on this chapter of our lives, but I don't want to do so at the exclusion of you...our family, friends, colleagues, nurses, and even strangers who have been SUCH a vital part of this journey. So, I am creating a new blog that I will update not daily, but as often as I can. The address will be www.edisonathome.blogspot.com. I'll post on here again tomorrow to let you know that we're all home safe and sound!

This is one of my favorite pictures of the past 8 months. This is what it's all been about.  

Tuesday, 9/27

Well, we made it through our first night together! Edison did better than we did. He literally slept from 9 pm until we finally woke him up at 7:30 am. He didn't wake up once. I think he was just in such a deep sleep without the usual lights, bells and whistles of the NICU environment. We, on the other hand, slept fitfully...at best. I think we were both nervous and then Edison is a noisy sleeper! Starting at about 4 am he starts working on his "morning constitutional" and let me tell you, it's quite a production. I finally snuck out at about 5 am to get reassurance from the nurse that this was normal. Martin said he sounded like a constipated Donald Duck! It was so funny.

So, we're getting ready for Thursday! Our equipment should arrive tomorrow and then we'll be all set. I can't believe it's really happening. We have prescriptions and everything! We'll have a nurse come visit on Saturday and then we'll see our pediatrician on Wednesday. Pinch me! If everything goes as planned Michelle will be our nurse on Thursday. It's only fitting she should discharge her "Stinky Dinky".

Monday, 9/26

Not much of an update today but we'll have lots tomorrow! Tonight Martin, Edison and I will spend the night in the family sleep room together. It will give us a dose of reality as we wake up at 4 am to give him medicine and hang his feeds throughout the night.

Tomorrow we have a family meeting with the neonatology and surgical teams. Hopefully we'll get an exact date at that time. Even though I'm scared I'm also just ready to go!! So..stay tuned for tomorrow!

Look at my chubby arms! 

Mmmm, hands! 

I weigh 12 pounds!! 

Thursday, 9/22

Unfortunately the third time was not a charm for the swallowing test. Edison was in a GREAT mood and was smiling at everyone. He took the bottle and was able to get some of the barium, but he just didn't swallow it. Having it in and around his mouth upset him and then he started crying. We know he swallows, he just doesn't seem to be able to coordinate it with sucking from the bottle. A part of me thinks if they gave him a little spoonful of baby food it might be a different story. One day we'll try.

He is gaining weight like a champ and is just shy of twelve pounds. He really looks great.

Wednesday, 9/21

Today marks the end of summer, which means tomorrow we will officially begin our fourth season in the hospital. Hopefully this one will be just for a week or two. Dinky's doing great but is not a fan of the swallowing study. The second one yesterday was not a success, largely because we had to wait for 30 minutes and he got a little grumpy. They don't feel comfortable trying to feed him when he's crying. So...we'll try for round three sometime this week. Third times a charm? We'll see.

Other than that the plans are still on schedule for within 2 weeks. We will have a family meeting next Tuesday and our equipment should be arriving at the hospital during the next several days. We are going to try and spend next weekend in a family room with Edison where we would be responsible for all of his care but would still have a nurse available if needed. This will be a good dress rehearsal!

Tuesday, 9/20

I tell ya, our days go from held breath to sighs of relief. Overall, the ultrasound was good. It does show a little bit of fluid between his brain and skull, and his ventricles are mildly enlarged, but nothing that requires any further attention. They'll just keep an eye on it. An MRI would really give us a better idea of any damage his brain might have suffered, but it's better just to watch him than risk sedating him and possibly having to intubate him for that test. His smiles, nosiness, and sociability are all good signs.

As for the swallow test, the first try was a no-go. He started crying and they were worried he'd aspirate the liquid so we'll try again this afternoon.

Monday, 9/19

I remember quoting Gilda Radner a few months back, "It's always something". Hopefully this new something will turn out to be a nothing. They are concerned about the size of Dinky's head. His head circumference is out of proportion with the rest of him. That, and the fact that the soft spot in the back of his head has not closed like it should have a few months ago. They did a head ultrasound today and we should get the results tomorrow. Needless to say tonight will be restless night. I met with the neonatologist today that will follow Dinky at discharge and she said it's fairly common for preemies to have fluid between their skull and brain that's benign, they just have to grow out of it. If it has to be something, hopefully that will be the case. We will definitely let you know.

Other than that he had a good day today. He was discussed at the discharge meeting today for the first time! They are anticipating a week to a week and a half!! The wheels are definitely in motion. Stay tuned...

Dinky and mom. 

Saturday, 9/17

We had a nice relaxing Saturday. My aunt Dobie, who many of you have gotten to know through the blog, came by for a visit with my cousin Missy. He was a little grumpy with gas pains but still managed to give out plenty of smiles. Other than that no news. We're just waiting for his swallow study on Tuesday and maybe week after next he'll be home!

Don't eat the cheeks! 

Dobie and Dinky. 

A visit with my cousin Missy. 

Thursday, 9/15

Edison had a good day today. He was cranky at times but it seems like he's just turning into a regular baby...you have to try and interpret his cries and what they mean. Unfortunately he still gets just a little "dusky" when he cries really hard but as soon as you calm him down he's fine. It just means he's going to always get whatever he wants because we don't let him cry for a minute :)

Next Tuesday he will go for a swallow study and in the meantime they are trying to shorten the amount of time that his feeds are run (from continuous to now 2-1/2 hours on, 1/2 hour off). The goal will be that he gets fed in an hour. So anytime towards the end of next week, beginning of the following week he could be coming home. We're going to buy diapers tonight...VERY exciting!

Tuesday, 9/13

We are on the fast track. Dinky continues to shine and with each step we get a little closer to home. It looks like he'll be home in a 1-1/2 to 2 weeks. I am feeling a little less terrified...now I'm just scared :) It will be fine. I think they will make sure we're well prepared by the time we get home. Today Martin and I took a class on infant CPR and then we'll take a class on caring for his g-tube. Not the baby care classes we were anticipating many many months ago.

We met with our surgeon today just to get an idea of the overall plan. Early next week they will do a swallowing study that will determine if Edison can take even the smallest amount by mouth. That will be exciting. We'll meet with our surgeon once a month after we go home. I'm glad he'll be following us so closely...he is definitely a comforting presence to me and we trust him completely. He knows Dinky inside out...so to speak.

I think I will plan to close the blog the day Dinky comes home. I have a feeling he won't give me too much time to gather my thoughts :) So we may be entering the final chapter. I cannot tell you the strength we have gathered from your comments and just knowing you're out there.

***Just in case you didn't see my friend Sue's comment, please keep her mom in your thoughts and prayers. She took quite a spill at home and is in the hospital recovering***

Buddha takes a bath.  

Sunday, 9/11

Dinky had a pretty good weekend. He had the sweetest little play periods but in between he had some rough patches. However nowhere near the "rough" of the old days. These seem to be normal baby rough. I think that he's teething. It's so hard to know for sure but he is drooling a lot and his gums are pretty pale. And on top of that his little bum is very raw and irritated. It is SO painful for him during diaper changes. I had to let the nurse do it today because it just killed me to be causing his pain. Interestingly, our nurse today said that her kid's rumps got like that right before they cut a tooth. So...maybe that's what's going on.

His personality is developing more and more each day and he is such a funny boy. His big, gummy smile has started to change. Now he has a funny little grin that reminds me of the "Joker" from Batman. It's especially cute when he crinkles his nose along with it. I know it's nice for so many of the staff at CHOP who saw him through such rough times to get to experience his joy. I can't wait until we can visit our friends at RWJ so they can have the same experience. They saw him through the hardest time of all.

He's baaaaaaaaack! 

Friday, 9/9

Dinky's having a great day today. When I walked in this morning I was a little concerned because 2 of the nurses were hunched over his bedside, but they were just getting grins! He's been very happy. He finally got all of his IV's, etc. out so we're back to just the feeding tube. We are on the home track again (maybe 3 weeks or so!)

I want to wish a very special Happy Birthday to my uncle (and surrogate Granddaddy) Gordon. We love you!

Wednesday, 9/7

One thing I have failed to mention: Someone, and I won't mention names, helped me smuggle Nye (my 6 year old nephew) into the NICU so he could finally see this mysterious cousin he keeps hearing about. It was very sweet. Nye did great. I had asked him to whisper and I could barely hear him he was talking so quietly. He and Dinky shared a sweet look. It will be nice when Nye can really see him and touch him.

Things continue to go well although Dinky seems to have a little infection from one of his IV's (or BX's as Nye called it). They have started him on antibiotics so hopefully it will clear up soon. Today most of his roommates were all crying at one time, and they're all so tiny it sounded like a roomfull of cats mewing. Well, the lion roared. Dinky joined in with a cry that put all of the other babies to shame. He was very pleased to let them all know he's finally the loudmouth of the room. That's our boy!

Tuesday, 9/6

I definitely feel like we're getting our baby back. He started the day with a big, gummy smile, and had several more throughout the day. You can tell he's feeling better. It's harder to hold him now because he's so "wired" (IVs, g-tube, etc.) but he doesn't mind. His g-tube is rigged up to a little contraption that hangs from the ceiling and today he was swinging it around like a lasso. He's very funny.

I'll talk to his surgeon tomorrow and hopefully get an idea of our endpoint. He may be home just in time to turn into a pumpkin for Halloween!

Pictures

Here are a few pictures of our chunker the days before surgery...

Yum! Hands! 

Our big boy! 

Enjoying a visit with Kim. 

Sunday, 9/4

Today was Dinky's 7 month birthday yet he gave me the best present of all:
his smile.

A quick note on comments...

Many of you have mentioned to me that you have tried to comment and have been unable to. I have changed a setting that may make this easier. Also, there has been a lot of "comment spam" recently. These messages are mass produced and can be pretty vulgar. To prevent this you will have to go through one tiny extra step to comment. Blogger will give you a word that you have to type in. This just verifies that someone is typing in an individualized comment. Sorry about having to do this...

Saturday, 9/3

Dinky's continuing to mend. He went down to 2L of oxygen from 4 so that's a big step in the right direction. He still seems uncomfortable (understandably) and it is hard to see. I am new to motherhood but think I would much rather hear him scream at the top of his lungs than hear him whimper.

And we're still waiting for that smile...

Friday, A New Day, 9/2

Thank you all for your support these past 2 days. Things are looking up. They extubated Dinky (took out his breathing tube) about 11 this morning. He fought it at first but then settled out and is now resting comfortably. He was very upset initially but his sedation got cut, his foley catheter was pulled and the tube was pulled out with bright lights and 10 faces peering at him. Not a nice way to wake up. However he is now realizing that all of these things are positive and is resting comfortably. Whew.

I think I will go home tomorrow, sleep in my own bed, and work on these bags under my eyes that Daisy, the woman who cleans the NICU (and that we love), keeps pointing out :)

Now we just wait for that smile.

Still Thursday

Just to let you know that Dinky has settled out a bit. He hasn't had any more big episodes and seems more comfortable. He is starting to "wake up" a little bit and looking around with those beautiful eyes, and that's bothering him. He wants his ball and toys and he wants to roll all around his crib. For now we are having to keep him VERY still to protect his breathing tube. He is really fighting us. That little booger is stubborn...I can't imagine who he gets that from!

Thursday, 9/1

I have to be completely honest and tell you that I am sitting here staring at the computer screen and I feel like it's last February. This is a scary time and I just don't know what to say to all of you who have been so supportive of our little trooper. He's having a hard time.

Last night he had a very big episode that was reminiscent of the early days. They finally got him stable and he stayed okay throughout the night. However this morning things have continued to be rough. It seems to be a vicious cycle. He is VERY upset about the tube being in his throat again, which causes him to bear down, which hurts his incision, which causes him pain, which makes his airway collapse, which makes them give him more pain meds, because he's in pain, that makes it harder for him to breathe, because he's so sedated...and so on.

His surgeon has been around several times this morning and seems to feel that the best thing to do is to get him extubated, take the tube out. But it's hard because he can't be so sedated that he won't breathe, but we also have to manage his pain. So I think they're just going to try and keep him comfortable throughout the day and try and extubate him in the morning.

I want my baby back. I think all of us are just longing for that smile.

Michelle was here with him until well after 10 last night so if you're reading this Michelle, GO BACK TO BED!