Wednesday, 8/31

I knew today would be hard...and it is. In general Dinky's surgery went well and there were "no surprises" as his surgeon put it. But after surgery they tried to extubate him (take the breathing tube out) and he started to have a hard time breathing so they had to put it back in. Seeing him on the ventilator is truly just devastating...even if it is temporary. He seems so big and aware now and I ache just knowing how happy he can be and how miserable he must feel now. The general consensus seems to be that this is strictly related to his being too sleepy and not indicative of anything bigger (airway, lungs, etc.) We have gotten varying estimates about how long he'll be on the ventilator ranging from tonight to a week. So we'll just have to see how he does as he wakes up. Michelle, whose picture you have seen on here with Dinky, has him today and is taking good care of her "Stinky". That is a comfort.

Thank you all for your support and prayers. They help.

Monday, 8/29

I'll repost yesterday's blog due to some random comments...

Dinky's having a great day today. We had a very nice visit with my friend Kim who is visiting her sister in Maryland and came up for the day. I'll post pictures in the next few days.

Here's yesterday's post:

Sunday, 8/28

Sorry I haven't updated in a few days. Things are kind of at a standstill while we get ready for surgery. Dinky had a good weekend. His little choking episodes seemed to lessen somewhat. He has gotten VERY active and is all over his crib. You may have seen the little plastic ball that he likes to kick...well, Martin said yesterday he rolled up against it and grabbed it with both hands and started licking it. He can be an odd little fella at times :) He continues to gain weight and is up to 10 pounds 12 ounces! He has dimples and rolls, just like a baby should.

I will try and update again before Wednesday but if not please keep us in your thoughts and prayers EARLY Wednesday morning. Thank you as always.

Thursday, 8/25

Dinky had a good, albeit somewhat fussy, day. He is still getting a little choked up on his spit and no one can figure out why. We did see our surgeon and the plan is for him to have surgery on Wednesday. This is when they will do the stomach wrapping and they will also dilate his esophagus again. I was telling Martin that this surgery is almost the hardest for me because he's such a baby now. If he wasn't in the intensive care unit you wouldn't even know he's sick. So it will be hard to not see our bubbly smiley baby for a few days. Hopefully his recovery will be quick and his pain well managed.

One funny tidbit. As all of you who have followed the blog know, Dinky has had his occassional issues with pooping. Well, he seems to have it figured out. While he is "working" on one, he pushes up with his feet and wiggles his little butt around trying to "shimmy" it out. It is the most hysterical thing I have ever seen. We call it his fish dance. Whatever works...

He's been working on the railroad.... 

Ich liebe meine Tante Moni! 

A visit with Uncle Tyson 

Tuesday, 8/23

Dinky had a great day today. He enjoyed a visit from his Aunt Moni and Uncle Tyson. Monika and Martin gave him a bath and Martin dressed him in his "Daddy's Boy" onesie. He loves attention and was eating it up today.

Edison is getting big, big, big. He is up to 10 pounds 9 ounces and looks every bit of it. Ever since our friend Valery brought him a Chicago Cubs outfit he's been working to fit into it. It won't be long!

We did meet with the surgeon today to get more information on the Nissen surgery. He anticipates doing it late next week or early the following week. It's hard to say if this will be a magic bullet because Edison has so many issues that could be playing into what appears to be reflux (his esophagus closing up, his tracheomalacia, etc.) However the surgeon feels the reflux is risky enough and significant enough to do the surgery. Until then he'll just continue to grow! Every day that that's all he has to focus on is a good day.

Saturday, 8/20

Argh...I'm reposting this (again) to get rid of misc. blogger comments...

Saturday, 8/20

Dinky had a good day today. He keeps getting choked up on his spit a little bit which is unnerving. I don't know what's causing it all of a sudden. Luckily he comes out of it okay.

He was very independent today and wanted no part of his mom. Every time I'd try to pick him up and cuddle he'd scream and scream. He just enjoyed laying in his crib by himself and smiling at all of his toys (and himself in the mirror). One of the nurses made the funniest comment. Dinky definitely laughs. In fact he looks like he's just belly laughing only without sound. Today the nurse commented that it looks like someone hit the "mute" button on him. He's a character.

We'll know more about the time frame for surgery on Tuesday. And don't worry Michelle, if it's your day off I'm sure you wouldn't mind a little overtime!

Friday, 8/19

(This is actually yesterday's post that I am redoing to get rid of one of yesterday's comments....)

Sorry I didn't update yesterday but we went out to celebrate Dinky's Daddy's birthday!! Dinky gave him a very sweet birthday as he was all smiles for his dad most of the day. He really has been in a much better mood since they went back to feeding him in his intestine (because this prevents reflux).

Speaking of which, it seems our little star is going to have one more hurdle. Hopefully this will be the last. Because of the complications caused by his reflux they are going to do a "Nissen fundoplication". That is when "a new valve is constructed as the upper portion of the stomach (fundus) is wrapped around the lower end of the esophagus. The wrap is intended to support the sphincter muscle so that it will open only when it is supposed to and not allow stomach acid to push its way up into the esophagus". This could be huge in terms of helping him deal with reflux and we may even be able to give him some bottle feeds afterwards. The surgery is tentatively planned for next week sometime and he would stay in the hospital for 3 weeks after surgery.

We will definitely keep you posted as plans for this become more clear. It's a scary step but, like the aortopexy surgery, it could be life altering

Tuesday, 8/16

Our TEN POUND baby had a great day today. He worked with the occupational therapist who works so well with him. Today she rolled him around on what is basically a skateboard! It was the funniest thing I've ever seen and he loved it! The purpose is to get him used to moving around. We were hoping that once he saw that he enjoyed it she could then put him on his tummy and that he might enjoy that while in motion. No such luck. He is really resistant to "tummy time" for some reason. He doesn't tolerate it for a minute. This is strange because when he was on the ventilator he used to love his belly. He really did love rolling around the unit and he brought a smile to many faces as he did!

Going on a fun field trip! 

Looking around... 

I think he likes it! 

Monday, 8/15

Dinky continues to do well with just the tiniest of setbacks. Today he made a little "gurgling" noise (while asleep) and his heartrate dropped and his oxygen level started to drop. Luckily both numbers came back quickly and without any problem, but it raised the concern about reflux. (This is the same thing that happened when he "coded" but on a MUCH smaller scale). So they stopped his g-feeds and he's back to all j-feeds (into his intestine). I'm not sure what that means long term, we just have to regroup and figure out what to do. There is a surgery that can be done to prevent reflux (the stomach is wrapped), but they haven't wanted to do this because of the risks of surgery and the long term implications of this surgery (even later in life Dinky wouldn't be able to throw up). So...I'm not sure what's going to happen. Our doctor will be talking to our surgeon and then we'll go from there.

Other than that Dinky's just happy as a clam and has become quite the nosy neighbor. He loves to be where he can see all of the action in the room. He's a hoot.

Sunday, 8/14

Sorry it's been a few days since I've updated....

Dinky's doing great! He has been completely off oxygen for 3 days which is just incredible to us. We are enjoying seeing his face without anything else on it. He's a very handsome boy :)

They are continuing to increase his g-tube feeds and if all goes well he'll reach full feeds in a little over 2 weeks.

Yesterday I put his little rattle on his chest and he reached up to grab it and started shaking it. This was a huge step. Little milestones like this are just amazing to watch. We are still working on his head control but we'll get there. He has been more "drooly" and has been "gumming" his pacifier so we are beginning to suspect he might cut his first tooth in the hospital. I have to admit that's not a milestone we thought we would reach here. As long as he doesn't take his first steps in the hospital!!

Thursday, 8/11

Just a quick note to let you know that Dinky passed his hearing test today. We weren't concerned about it, it's just something standard they do as part of our "homeward bound" worksheet. I also did a little interview for a radio station here for the Children's Miracle Network. I had been warned going in that they would ask hard questions....who knew that "Can you tell me your name and where you're from?" was such a hard question! That's about all it took to get me blubbering. Anyway, I think I still sounded intelligible and thanks to waterproof mascara didn't look too much of a mess :)

Wednesday, 8/10

Another good day today. They are continuing to advance Dinky on his g-tube feeds. If all goes well he'll be on full gastric feeds in 12 days. He also stayed off his oxygen all day again!

Tonight we met with a prospective pediatrician who seemed very nice and knowledgeable. All of these are steps getting us closer to home. Martin and I will need to take a few classes at the hospital (CPR, g-tube care) in the next few weeks, too.

We are definitely starting to see Dinky's personality shine through. He is a character. We got tickled today because Martin and I were on either side of his crib doing all of the goofy things we could think of to try and illicit that million dollar smile. Dinky just stared at us with this look of sheer boredom and UNamusement. Finally we decided that maybe he just wanted to be left alone so we went and sat out of his sight where we watched him proceed to have a grand old time all by himself. His arms were moving, his legs were kicking his little ball, and he was all smiles. After a few minutes, I wanted to join in the fun so I snuck up beside him but once he caught me out of the corner of his eye he very deliberately turned away. I sat back down and he quickly returned to his smiley, playful self. He is a funny boy.

Here's Dinky in his new outfit from his favorite nurse, Michelle. He's very upset that she's going on vacation for 2 weeks but decided he'd let her go. She'll be back just in time to send us on our way. He had a great day today and went for 9 hours without oxygen!  

Sunday, 8/7

Just a quick update since I didn't do one yesterday. Edison (I'm trying to convert) continues to do well. He had 2 trials off oxygen today and did great! They are very slowly increasing the amount of formula that goes into his stomach and tomorrow will start increasing at a higher rate.

I was telling Martin yesterday that I have never felt such extremes of emotion as I do with Dinky. Early on I felt a crushing sense of sadness, and now when I watch him smile, I am overcome with joy. Those of you that know me know that I'm not one to really laugh out loud, not in the way that many of my friends do (you know who you are). But I find that as I watch him, I have started to laugh. All it takes is that grin followed by his silent laughter (that smile gets even bigger and he throws his head back) to make my chest hurt with laughter. Motherhood is awesome. And I mean that in the true sense of that word.

If you look closely you'll see that Dinky's prongs are ON his nose, not in it. He doesn't seem to mind. He had 2 more hours oxygen free today and did great. They are also beginning the slow transition back to feeding him in his stomach. This will take about 2 weeks. Assuming that goes well and he is weaned off oxygen he could be home by the end of the month! Yikes! 

Thursday, 8/4

Our birthday boy had a big day! He went to his milk scan and tolerated it great! Our nurse Michelle said the only time he cried was when she sat down and stopped doting on him but when she stood back up he quickly recovered. We don't know the official results yet. There was definitely some reflux but they had not calibrated the severity. Hopefully tomorrow we'll get that information. They didn't trial him anymore off the oxygen because they felt like his respiratory rate was just a little fast towards the end of his trial yesterday so they want to give him a little break.

This evening Martin and I just had the most special time with Dinky. He was in such a playful mood and was just smiling up a storm. Martin was acting silly and Dinky was just eating it up. It's the first time we've really seen him "laugh" just observing something, usually it's when you're tickling him or stimulating him in some way. He was truly just laughing at Martin (or with him as Martin likes to believe).

I could spend hours reflecting on the last 6 months, but I think I just want to relish the smiles that we got today. They say more than I ever could.

Our birthday boy showing off the card his nurses made him! 

Birthday kisses 

Showing us what he thought of our 10th rendition of "Happy Birthday to You" 

Wednesday, 8/3

Dinky had a big day today! From 12 until 2 he was breathing COMPLETELY on his own...no oxygen, no vapotherm and no vent. It was wonderful to see! They are "sprinting" him as they call it: giving him a certain amount of time each day without oxygen that they will gradually increase. He passed today's test with flying colors.

Speaking of tests, tomorrow he will have the milk scan I mentioned yesterday. He is not going to be a fan of this as they have to strap him down for an hour so they can follow the path of the milk. He is a big fan of having his pacifier dipped in "sweeties" (sugar water) so hopefully that will help him get through it.

Tomorrow is also someone's 6 month birthday! Guess who?

Tuesday, 8/2

Well, our NINE pound baby continues to move right along. He is SO chunky now! I love it. It looks like a lot of changes are going to start happening. Within the next week or two they will be doing a "milk scan" to see how much reflux he actually has. Ever since he "coded" they have been feeding him into his intestines so that nothing will be in his stomach to reflux up his esophagus. So using formula and a special dye they will be able to do x-rays to see how far up his esophagus formula goes when put in his stomach. After this test we'll meet with the surgeon and the neonatologist to discuss next steps in terms of feedings. And that's the key to coming home.

They are also going to try "sprinting" his oxygen. This means there will be times when they take him off completely to see how he does. They put him on 1.5 L today and he seemed to handle that okay.

All of this is exciting but it is also scary. It will be such a thrill to bring him home but I am also aware it will be a huge adjustment. This has been our life for the last 6 months. I remember right after Edison was born we bought a book on preemies and when they come home and the first line said, "At this point the NICU probably feels like home" and I looked at Martin and said, "Yeah, right". But it is so true. We felt at home at RWJ and then never thought we'd feel at home at CHOP, but we do. So...I still have a few weeks to prepare :) I'm going to tell the social worker she better start working on me!

One more thing that I have been forgetting to post over and over. I just wanted to share something my 6 year old nephew told my brother and sister-in-law in response to all of Dinky's feeding issues. He said that one day he wanted to go to medical school so he could invent a machine to help babies digest their food better. That's my Nye.