Sunday, 7/31

Just a quick update since I didn't get to it yesterday. In general we've had a pretty good weekend. We hit a small snag yesterday when Dinky's G/J tube (feeding tube) got clogged again and we had to go back to interventional radiology. It was a minor bump but frustrating in that it had just been replaced 8 days earlier. The formula he's on and some of the medications he's on are a little thicker so they think that's why it's clogging. Hopefully he'll keep this one for a while.

So, not much to report. We're hoping to have a family meeting with the neonatologist and our surgeon this week to really start talking about the big picture, going home, etc. The main question is how he'll be fed once we go home (g-tube (stomach) v. j-tube (intestine.) So hopefully we'll get more information.

Friday, 7/29

Things continue to move right along. Yesterday the doctor actually mentioned the "H" word (home). You're not allowed to say it out loud in front of the baby because then they tend to back slide a little. I have to admit the idea was a little daunting. Okay, a lot. They are thinking in about 4-6 weeks. In the meantime they will continue to try and get him off the oxygen and figure out what to do about his feedings although he will definitely come home on some sort of tube feedings. We will have a lot of support by way of a nurse, physical, occupational, and speech therapy. It's just scary. There is a "peer counselor" in the NICU whose daughter was there for about 6 months and she was great to talk to today as she affirmed and normalized a lot of my anxiety.

As for our little guy he was very fussy today. The doctors think he's just colicky because he seems to have his certain times of day when he's just inconsolable. In a way I hope that's what it is because that will pass. It's hard because I can't walk with him to soothe him because all of the wires only go so far!

In all of his fussing today he seemed to be trying to tell me something. I finally got it: "Happy Birthday Great Aunt Polly!"

Here's a picture of Dinky taking a nap in his new outfit from "Aunt Sue". I'm especially fond of this one because it says, "I love my mommy". He had another good day today (and yesterday). He's doing well on the 2L of oxygen. Today they stopped his morphine. It has been a long, slow process to get him weaned as he has been on either morphine or fentanyl almost his whole life. He keeps gaining weight and is now 8 pounds 13 ounces!! We are really excited at how well he's doing
 

Monday, 7/25

Dinky and I had a great day...until about 5 o'clock. That seems to be his fussy, gassy time. But earlier in the day he was just all smiles for almost an hour. We had such a good time. The nurse kept saying, "What are you two doing over there?" The good news is that when he was fussy he didn't have any of his "spells" even though his oxygen has been turned down! Yay! He's now on 2L of regular oxygen. He was on this for a few days before he started having the "blue spells" so hopefully the last 3 weeks have given his trachea some time to heal. In the meantime I'll just be on my usual pins and needles which is probably where I'll be for the next 18 years!

Saturday, 7/23

Today was a big day! Dinky moved up a diaper size!! Below you will see his first diaper, for micropreemies, and his current one. I missed the one in between. It really is amazing to see the difference. He's more than quadrupled his weight since birth!

Unfortunately our big man took advantage of these new diapers and wanted to make sure I got plenty of practice changing them. The thing with Dinky is he definitely does things from one extreme to the other. We've gone from worrying that he wasn't pooping enough to worrying today that he was pooping too much! I'm hoping it's just a result of his being off his feeds for 24 hours and that he'll start to get back to normal, whatever that is.

We enjoyed a nice visit with Sue today! He was very excited to show off how much he's grown since she last saw him. And in between poops he even flashed one of his winning grins. Another good day to add to the books!

First diaper and current diaper...what a difference! 

Look at my big new diaper! 

Friday, 7/21

Yesterday we had a minor setback but it was all resolved by today. First a "refresher"....
Dinky's feeding tube is called a G/J (stomach/intestine). He is fed through the J part so that he won't reflux which is what caused him to stop breathing last month. His G, which is supposed to be in his stomach, is actually in his duodenum (also intestine) and basically isn't doing anything right now.

So...yesterday at about 5 pm his J tube became completely clogged. They tried for almost 2 hours to "flush" it out by inserting sterile water and taking it out, over and over again. Unfortunately this caused just excrutiating pain for him we think because it just irritated his intestine. So, they had to stop all of his feeds and put in an IV. Needless to say our little camper was not very happy. So Martin and I stayed with him last night to give him lots of TLC. Today they replaced his tube and even managed to get the "G" part back in his stomach where it belongs. So by the time we left he was "eating" again and fast asleep. All is well in Dinkyland.

The bright spot in all of this is that last night there were times that he was screaming, I mean screaming in pain. And while this was truly unbearable we were encouraged that he didn't have any "spells" which means his airway is healing. That's a great sign! Dinky handled all of this much better than his mom did and even managed a few of this heart melting smiles this morning. He is really something.

Wednesday, 7/20

An update on our baby whose name has been changed to Mr. Cranky Pants. Actually that's not fair, poor little thing is so gassy. So maybe we should call him Mr. Gassy Pants. Other than being a little fussy he had a really good day. He worked with OT and PT today (occupational and physical therapy) so he had a busy morning. He also discovered his hands which was SO cute. He kept bringing them all around his face. Unfortunately his hand-eye coordination is a little better than his hand-mouth coordination.

Medically he is on 100% regular formula now! They have been trying to transition him from the preemie pre-digested formula he was on which has not been a smooth transition. His feeding tube is connected to a bag that's supposed to "vent" the air out of his stomach. But, to make a long story short, his "g" or stomach tube is actually in his duodenum (intestine) so his tummy isn't getting the relief that it should. I'm not sure what will eventually make this more bearable. Speaking of bearable, they are also continuing to wean his morphine. He gets such a tiny amount now and they have gone from every 6 hours to every 8 hours. The next step will be to completely stop it. All you moms and dads out there, we would welcome any tips you have on how to help with gas pains!

Now THAT'S a good nap! 

I was looking back and saw this picture and wanted to post it. If you look in the background you'll see an old picture of Dinky from when he was about 3 weeks old. The difference is amazing!  

I'm wearing pants! 

The Ruefs 

Opa 

Monday, 7/18

I'm so sorry for not posting earlier. The library at the hospital had shortened hours this weekend so I was thrown off! All in all we had a good weekend. Martin's dad and brother were in town and were a huge help continuing to help us get our house together. They also reserved plenty of time to hang out with Dinky. Dinky would stare mesmerized as his Onkel Michael and Opa would speak soothingly to him in German. They were a hit indeed.

Dinky had a really good weekend other than having several painful gassy periods where he would start to turn just the slightest bit "dusky". It's not turning blue by any means but it is an indicator that his oxygenation is compromised. It made it harder to leave him because if he's not comforted immediately he can really get himself into trouble. So on Sunday I just didn't leave him at all. It was actually nice (but exhausting) to sit at his bedside and observe his "night". He actually sleeps realy well and slept for about 6 hours straight. So Martin and I won't be in for too much of a shock when he comes home.

He continued to gain weight and is about 8 pounds 3 ounces now. Most exciting is that he finally grew in length! I think I mentioned that he had been 50 cm (20 in) for 6 weeks now. This past week he grew 3 cm and so is now almost 21 inches. Very exciting!

Other than that he continues to have the sweetest smiley periods. I really feel that he is just on the cusp of laughter. He has to be. He really seems to get so overcome with smiley goodness that pretty soon he's gonna giggle. I can't wait!

Bath time with dad! 

Splish Splash!  

Nice to meet you Uncle Mike! 

Smiley in my new outfit 

Thursday, 7/14

So our not-so-little one gained almost 100 g. last night and now weighs 8 pounds and 1 ounce! He looks great. He wasn't quite himself early in the day but seemed to perk up towards the end. He enjoyed a visit with his Uncle Michael and gave him plenty of smiles. Uncle Michael and dad then gave him his first official tub bath (thanks to my cousin Susan for the bathtub)! He really enjoyed it and fell into a deep sleep afterwards. I'll be posting some pictures in a little bit.

Still Wednesday...

I know that there are some people in the UK that check on Dinky from time to time (through my sister-in-law), and I just wanted to say (and should have said much earlier) that we are definitely keeping everyone in our thoughts and prayers with the recent attacks.

Wednesday, 7/13

Things continue to go well for our little man. He's still gaining weight every day and is now up to 7 lbs. 13 oz!! He's a chunker! It's so hard to believe that he is just the size of the average newborn because to us he looks HUGE! They went back down to 3L on his vapotherm (he had been at 5 a few days ago) which is good but scary. They are trying to see what the minimum amount needed is to prevent any spells. Trial and error is just scary when it's dealing with your child! He's also been really gassy which is so painful to watch. The occupational therapist taught us some massage techniques we can use on his belly to help ease his discomfort. Judging by the sound effects that follow I'd say it does the trick! The physical therapist worked with him today and said he's "right on target" with some developmental skills. All of these are based on his "corrected age", so 2-1/2 months, rather than the 5 months that he actually is. He can now lay flat on his back, looking straight up, and move his head from side to side in a controlled fashion. He really is making huge strides.

Look, ma, no string! 

Love. 

I'm so coy! 

My new toy! 

Monday, 7/11

An uneventful weekend...our favorite kind! We had a great day on Saturday and really just played with Dinky all weekend. We got some great pictures but we won't be able to post them until our computer at home is running (hopefully Wednesday). Other than that we're just waiting for him to grow out of this malacia in his airway and praying he doesn't have any spells in the meantime.

The exciting thing today is we did "pacifier dips" in formula. You know he's fed through the tube in his stomach (actually his intestine), and so he's never tasted anything. He loved it! He's also been gaining good weight and is up to 7 lbs. 11 oz now. The only thing is that lengthwise he appears to be taking after me more than Martin. He's 50 cm. long and has been for the last 6 weeks! He really is filling out as you will see once we can post those pictures!

Friday, 7/8

Just a quick note before the weekend. Things are still going really well here. Dinky is sleeping off the exciting day he had yesterday. He's really pooped today. So I really don't have anything to write about and that's a good thing!

Have a good weekend!

Thursday, 7/7

I don't know what has gotten into our baby! He has been absolutely giddy today. He truly has just been smiling, grinning, all day! One of the doctors came to talk to me as I was holding Dinky and he just had his head craned back and was smiling ear to ear while his little legs and arms are just going all over the place. He even had his eye exam today and didn't cry.

His eye exam went well. There are still a few issues but we're out of the danger zone. He has some "corkscrew" vessels and some other abnormalities but it's not soemthing that would require treatment. As a preemie he is more likely to require glasses and with this other issue it might impact his peripheral vision down the road but we don't know to what extent. He won't need another exam for 6 months which is a relief.

So it's been a really, really good day!

Wednesday, 7/6

Dinky's back and doing well. The dilation of his esophagus went off without a hitch and the infamous string is now gone (the one that went in his mouth, down his esophagus and out his g-tube). So I know that's a relief for him! The bronch went well. It did show that he still has some malacia in his airway (weak sections). They think that's why his airway is collapsing and he's having "blue spells" when he bears down. Unfortunately the only real cure for that is time and growth. It is encouraging that it doesn't require any surgical intervention. They did increase his oxygen from 3 liters to 5. It's not that he requires that much oxygen it just provides more pressure which will "blow" his airway open and give him more reserve. He's waking up now and his daddy is downstairs entertaining him (more on that in a minute).

On his way to the O.R. this morning Dinky was obviously trying to poop. They were wheeling him there and I jokingly said, "Don't worry Dinky, when you're done Dr. D (his surgeon) will change your diaper". So afterwards his surgeon, who I've mentioned before is very serious, was talking to us about the procedure. After he told us all of the information he deadpanned, "And I changed his diaper so he's all clean". It was pretty funny.

Now, about Martin. I just have to mention what a special bond he and Dinky have developed. No one can make Dinky smile like he can. Yesterday they were playing all sorts of games and Dinky was just as tickled as can be. Today I was holding Dinky before he went to the O.R. and he was looking around very curiously. We had taken down his mobile so Martin went over to get it so we'd have something for Dinky to focus on. He came walking back with this big colorful mobile and as soon as he got in Dinky's field of vision Dinky just broke out with the biggest smile. It was so cute. I have to admit I too had to smile at the image of my 6'3" husband looking like a tall tree with that big mobile. It provided some much needed stress relief this morning.

Tuesday, 7/5

In case I don't get back up here today I wanted to give you a quick update. We're having a good day. Dinky has been smiling away. He's been doing his big gummy, eye-squinty smiles. We just expect to hear him burst out laughing at any time.

Unfortunately he may not have as good a day tomorrow. He'll be going to the O.R. for a bronch and another dilation of his esophagus. The surgeon said he will be intubated at some point but hopefully won't come back intubated. These recent episodes appear to be related more to his lungs but they just want to rule out the airway once and for all. He'll be going about 11 am. I'll update you as soon as he gets back.

Monday, 7/4

Happy July 4th everyone! And a happy, happy birthday to our dear boy. He's 5 months old today! It has been an incredible 5 months. I was looking back at some old pictures today and it truly blows my mind when I see how far he has come. Monika and Helmut, I think of your first visit with him...you won't believe how much he's grown. When our computer at home is up and running I will post a picture of his early days along with a current one so you can all see.

He's having a fairly good day today although he did have another little "spell" this morning. I think they will do a bronchoscopy on Wednesday just to make sure his airway looks okay. So far the general consensus seems to be his lung disease.

While five months feels like it has been a loooong, looong time, and it has been, there is longer. There is a family in our unit who just celebrated their baby's first birthday. There are so many stories in the NICU here as there are in NICUs everywhere. I am so thankful for the amazing nurses that we have here (and that we had at RWJ). They really do so much to keep us going. I am lectured on a daily basis about eating, sleeping, etc. They genuinely care about the families and babies that they take care of.

Sunday, 7/3

Sorry for not updating yesterday. I stayed at the hospital again and didn't get to the library in time to update. Dinky had yet another spell yesterday morning which made three in a row. They are trying to change his formula and as they are doing that (excuse the images to come) the consistency of his poops is changing and he's having a really hard time with them. Such a hard time that he just turns blue and doesn't take in enough oxygen. From what we're being told this can be common with preemies with lung issues and he'll just need to grow out of it. They have slowed down on transitioning his formula and thankfully he went the last 24 hours without any problems.

With all of the anxiety these past few days I forgot to mention that Dinky has dimples in his elbows. It's very sweet. He's definitely starting to get some "baby fat".

On a lighter note...these past five months we have had more than our fair share of cafeteria food. As with everything else we've had some good days and some bad days. Yesterday Martin thought he was getting a helping of french toast for breakfast. He put some on his plate and smothered it with syrup before realizing that what he had gotten was "scrapple". Not being from this area we weren't familiar with it but it's "cornmeal mush made with the meat and broth of pork, seasoned with onions, spices and herbs and shaped into loaves for slicing and frying". Definitely not something to be eaten with syrup (and many people would say not something to be eaten at all!) Those of you who know Martin know that he never throws anything away, but even he could only stomach a few bites. You know you're tired when even scrapple is looking like french toast!

Friday, 7/1

Just a quick update...

Dinky had a pretty good day although it started with another "spell" this morning. He's been okay the rest of the day, though. The doctors are concerned that he's started having these again so they'll watch him closely this weekend. If he starts having a harder time recovering from them they may put him back on the ventilator electively instead of potentially having to do it emergently. We are obviously praying that that doesn't happen. I think they will probably do a bronchoscopy next week to see if his airway still looks open. Right now he is downstairs sleeping comfortably in his daddy's arms.

We had a nice visit with our friends Randy and Jenny who are visiting Philly from NC. We relish any opportunity to show off our pride and joy :)