Tuesday, 5/31

Oh, it's going to be a big week for our wee one! First I'll tell you about his eye exam. Unfortunately the exam still showed stage 3 ROP (retinopathy of prematurity) but it's holding steady and hasn't worsened at all. The doctor compared the eye to a clock dividing it into 12 sections. He said they don't consider surgical treatment until 5 out of the 12 sections are impacted. With Dinky only 1 of his is so that's a good sign!

Now, for "the plan". I met with the surgeon today and things have changed a little from what we were previously told. The plan is to take him to the O.R. first thing on Thursday morning. How much they will do depends on how each step goes. The first priority is to dilate the esophagus. His has developed a stricture so it's like the "hourglass" I mentioned last week. They will insert a device that stretches it out. If this goes well, with no complications, they will move on to step 2. This step is to address the severe tracheomalacia in his airway. They will do a procedure called an aortopexy. Basically the aorta is lifted off the airway and sutured onto the sternum. This pulls it off the trachea to help open that up. This is my very basic understanding of the procedure. The surgeon said this only works in 2/3 of the cases (the statistic Martin and I have seen most often on the internet is 75%) but it has got to work for him. This kid needs a break!! While they do this procedure they will be doing a bronchoscopy at the same time so they will have some idea if it's working. If it's not they will, unfortunately, have to do a tracheotomy. This is when they make an artifical airway in his neck. He would need to keep this for several years and it is the least desired outcome. The only advantage is it will allow him to do things more developmentally appropriate because you're not constantly worried about the tube in his airway dislodging.

Whew. It's going to be quite a week. It is so incredibly scary but we've got to take this next step. Saturday will be 4 months since little Edison (see, I can call him that every once in a while) was born and we have got to work on getting him home.

I may not post tomorrow but the plan is for him to go to the O.R. early on Thursday morning so please keep us in your thoughts and prayers!

You lookin' at me? 

Tired mom and Dinky 

Smile for the camera 

Martin and Dinky 

Saturday, 5/28

Well, we seem to be back to "normal" now. Dinky had another good day today although he had to get his tube retaped again! He tolerated it well with the extra sedation. Ruby and Katy came by for a visit. Katy and I were joking that Ruby probably thinks Martin and I live here since she's come to visit us as much in the hospital as at home. Sometimes it feels like we live here!

Since Dinky's doing well I may not update daily unless there's something to report. I will definitely let you know how things go this week with the bronchs (and another eye exam). Happy Memorial Day Weekend!

Friday, 5/27

Thank you all so much for your support yesterday. You all mean so much to us. I am happy to report that today was a better day. They did have to retape Dinky's breathing tube again but prior to doing so they gave him a hefty dose of morphine to keep him calm. It seemed to do the trick. I spoke briefly with one of the surgery fellows who said that they will do a "bronch" on Wednesday and one on Thursday. The one on Wednesday, a flexible bronch, will be done at this bedside. The one on Thursday, a rigid bronch, will be in the OR like the one he had a few weeks back. After that we will find out their plan to fix his airway. Martin and I have been researching the 2 options, aortopexy and tracheostomy, so we can be prepared when we meet with the surgeon. It's a scary but necessary next step. Thank you, thank you, thank you again for all of your prayers and positive energy. We feel you.

Thursday, 5/26

Well, the "honeymoon period" has ended. We had an amazing 2 weeks (almost) which makes today even harder. They were retaping the area around Dinky's breathing tube this morning when he got really mad, "clamped down" and had another big episode where his heartrate and oxygenation dropped significantly. Fortunately the doctors were rounding on him at the time so they were right there, but it was very scary. The surgeon came by shortly thereafter and said it's just "too dangerous" to wait on his airway. Something has to be done. So the plan is to do another bronchoscopy within a week to look at it one more time. While they are there they will also have to put something in to "dilate" his esophagus as it is apparent it has a stricture, or narrowing, so it's connected but it's like an hour glass.

In terms of the airway they will either do the little suture to hold it open or do a tracheostomy which he would then have for several years. He'll talk to us about these options in more detail after the bronch. Initially they had said there might be the option to take out the damaged part of his airway but today he said it's like "rotten wood", you just wouldn't know when to stop. So it's been a pretty upsetting day.

Before I knew I would have all of this bad news to write I was just planning to write about Martin. I want to do it anyway. In the past 4 months (more if you count my time on bed rest) Martin has continued to work, teach, handle all of the details of our buying a house, have dinner waiting for me whenever I come home from the hospital, and still spend more time at his son's bedside than most fathers (even if he is reading the American Journal of Sociology to Dinky :) I have observed some other families in our situation and the limited, or lack of, support. I think I am quoting either my granddaddy or uncle Gordon when I tell you, "I am a lucky duck".

Tuesday, 5/24

I know, I know...I said I wasn't going to post every day. But, I also promised to let you know when there are any changes. Hopefully this one is minor but it was a little disappointing. I have mentioned Dinky's eye exams in the past, where they check for ROP (retinopathy of prematurity). For the longest time he didn't have any signs of it and then he had stage 2 disease. Well, now there are some signs of stage 3 but still not to the point that it would require treatment (laser surgery). Since he's now considered full term (even past full term) usually it would either begin to resolve or at least stabilize. There hasn't been much that's "usual" about Dinky's course but we will definitely hope for that!

Other than that another good day. I am getting more involved in his day to day care and today learned how to "hang" his feeds. It definitely feels good to be able to release some of this pent up mothering!! Martin held Dinky for a long time and he did great with that. Dinky's definitely developing more of an attitude, which is nice to see. He pitched a big ol' hissy fit and we were desperately trying to figure out what was making him so angry. We finally discovered he was wanting the green pacifier as opposed to the purple one (the green one is a little bigger). The minute he got it he settled right into a deep sleep. Silly thing! Martin noted today that he has the "Mary Moody pout" down pat!

Monday, 5/23

Another quiet day today. The only thing that's going on is that Dinky's g-tube (the tube that goes into his stomach where he gets his feedings) is leaking a little bit. Other than that we're doing well. I may not update every day while we're in this holding pattern so don't be alarmed if there's not a daily post. I promise I will update if there are any changes. Your support means the world to us!

Sunday, 5/22

We're anticipating a nice, quiet Sunday so we thought we'd just share a few pictures.

Sleepy Boy

Sleepy Boy
Posted by: mamaruef.

Dinky with New Outfit

Dinky with New Outfit
Posted by: mamaruef.

Martin

Martin
Posted by: mamaruef.

Saturday, 5/21

All in all we had another great day today. The most exciting part was we dressed Dinky in his first real outfit. We put him in a little onesie from my mom, "Ma", in honor of her birthday. Dinky celebrated by proceeding to pee all over his fancy new duds. When he's all dressed he looks like such a happy, healthy baby. It's hard to believe he's sick until you see that tube in his nose. We'll get there....

Since there's not a lot to write about I'll tell you about Dinky's age. Technically he's about 15 weeks old but with preemies you deal with a "corrected" or "adjusted" age. You take his age and subtract how early he was, and then you have his age developmentally. So he is 15 weeks minus 11 weeks early, so developmentally he's about 4 weeks old.

Hopefully we won't have much to write about tomorrow either!

Friday, 5/20

When the doctor rounded this morning he said, "Let's have a boring day, Edison" and it has been nice and boring. Martin and I both held him in the afternoon which was wonderful.

One funny thing that happened today: while Martin was holding Dinky he said that Dinky smells like toothpaste. I had to burst his bubble and tell him it was the gum I was chewing. We are enjoying this new experience of being able to get our hands on him and hold him and kiss him and smell him. It's long overdue.

Thursday, 5/19

Dinky is entering the "wireless age" as one by one he gets rid of another line. He no longer has an IV, and today they took out his central line which split off into three more lines which made diaper changes quite a production. So now he only has the breathing (ET) tube and the g-tube for his feedings. He is much more portable now so I took advantage of that and held him again. We are still working through his morphine wean so he's either too agitated or too sleepy. One of the head nurses at our old hospital who is now a great friend has given us some tips on how to help him get through this (thanks, Pat!)

So all in all he's doing great! We are in a bit of a holding pattern while they decide what to do about his airway so the updates may be a bit slim. I hope that all I have to report is that he's getting happier and fatter! We want to thank you again for all of your support and prayers. You have no idea what an important role those have played in our last 15 weeks.

Wednesday, 5/18

Ahh how I wish I could top yesterday's blog. Today was a good day in the grand scheme of things but not the amazing day we had yesterday. They are trying to wean Dinky off his morphine which runs continuously. Unfortunately he has been on either morphine or fentanyl most of his little life so it's difficult for him when they wean. Today he has been pretty fidgety and his heartrate has been really high. They bumped him up just a little and will try and go slower. It's difficult to watch and my wrist is sore from all the butt patting I've been doing today! The good news is he is up to "full feeds" and is back on his c-pap settings on the ventilator so all in all he's doing great! I didn't hold him today because he was obviously uncomfortable, but hopefully tomorrow we'll both get the chance to do it again!

Tueday, 5/17

So I think we'll just float home tonight. It has been such a good day, the best in a long, long time. We all needed this today but no one more than our little man. Our day started with a long cuddle session. I held Dinky for about an hour and a half and then Martin held him for the first time! He held him for an hour and a half, too. I tried not to hover too much but the nurse did put me in "time out" a few times :) It was such a special morning. After that we had "pacifier training". In the NICU pacifiers, or "Binkys" become more vital because it's important that babies be able to comfort themselves and it also helps develop the sucking reflex. For Dinky it's especially important because after having a tube in his mouth all of this time we are trying to avoid him having an oral aversion. He can't hold it in his mouth alone yet but he'll get there. So basically we've just spent the day gazing at each other and enjoying this respite. It really felt like we were just spending the day with our baby. Not our sick baby, our baby. That feels really, really good.

Monday, 5/16

Fortunately Dinky has had a better day today. We haven't had any big "spells" and he's been very comfortable. We are still waiting for them to take out the chest tube that he's had since surgery, hopefully that will happen at some point today. He's up to about "half feeds", so once this amount doubles he can get rid of the TPN he's had (the same liquid nutrition formula he had early on). Many of you have asked about his weight and I keep forgetting to mention it, he's about 5-1/2 pounds now so he's become quite the chunker :) So thank goodness we've had a good day. Dinky has smiled many times and so I have tried to smile, too. If he can be going through all of this and still muster a sweet grin then I had better get my act together!!

Sunday, 5/15

Unfortunately our little buddy has not had a good weekend. On Saturday and Sunday he had to be extubated and reintubated (meaning the tube connected to the ventilator was taken out and then had to be put back in). They’re still not sure why this happened but he gets really upset and “clamps down” and they just can’t ventilate him. We’ve got to figure this out soon because the reintubation is pretty traumatic for him. It made for a scary and unsettling weekend.

We did have a good visit with Shannon and Matthew (and Sue!) Dinky always seems to sense when we have extra support to get us through tough times.

Thursday, 5/12

Well, today has been a bit better than yesterday. Dinky had a bronchoscopy to look at his airway (they put a scope down his trachea). To have this done he did go to the OR to have more of a "controlled environment" and he was anesthesized. Basically they found that he has a section of pretty severe tracheomalacia. This means a portion of his trachea is "floppy" and doesn't stay open. That is likely what collapsed yesterday when he got upset. There are three different options for this that the surgeon will now be considering: 1) putting a suture in that part of the trachea that makes it stay open, 2) removing the bad portion of his trachea and reattaching the other part, 3) putting in a trach (a hole in the trachea-and neck- into which a tube would be inserted), he would likely have this for a few years. Unfortunately any of these options mean another trip to the OR for our little guy which is a little overwhelming to consider right now. It will be a little while before they pursue any of these options. We'll keep you posted.

I wanted to be sure and let you all know that unless there are significant changes I probably won't post again until Monday. Our friends Shannon and Matthew are coming to visit from Boston and with our computer at home being kaput it will be difficult for me to post. I will definitely update you on Monday!!

Wednesday, 5/11

We were warned early on that this whole experience would be a roller coaster. Today has been that roller coaster all packed into one.

This morning Dinky went down to fluoroscopy for a study. Somehow, as they were transporting him back to his bed, he extubated himself meaning he knocked out the tube that's connected to the ventilator. While he was extubated they decided to give him a shot to see what he could do. For four hours I got to stare at my beautiful baby, tubeless, and watch him breathe on his own (with some supplemental oxygen). It was amazing. He was doing so well! Unfortunately after about four hours he got upset about something and started crying...harder and harder. Sometimes when babies do this they "clamp down" (it's like they bear down and hold their breath) and so his heartrate and oxygen rate dropped down. Way down. I can't even describe how scary this experience was. It lasted minutes but felt like hours. They called the doctors in and they had to "bag" him and then reintubate him. They're just not sure what it is that makes him get into trouble. He did do so much better than last time so that's a good sign, he just isn't ready.

As my mom mentioned our computer at home is down but I will do my best to keep you all updated.

Wednesday, May 11

Jennifer asked me to let you know their computer crashed last night. She will post from the hospital when she gets a chance. But Dinky's fine. :)
mom

Pa 

Ma 

Wide-eyed and bushy-tailed! 

Monday, 5/9

In this three month journey there have been days (many good) and then there have been "days". Today is one of those "days" so this will be a bit brief. Dinky is doing fine and continues to wean on the ventilator and overall just show that amazing resilience as he overcomes this latest hurdle. He did get reintubated through the nose today versus the mouth where the tube was just after surgery. This is the first time ever he's had NOTHING in his mouth (either the "ET" tube or the suctioning tube) so that's very exciting. They have to sedate him to reintubate him so he was pretty out of it when I left, but tomorrow I'll help him celebrate his mouth freedom by trying to get him to take a pacifier (to try and prevent "oral aversion" down the road). So really he's doing great and is not having a "day" at all. My "day" is just sleep deprivation! Sometimes that little kiddo invades my nights as well and I dreamt about him and tubes and machines all night! I guess he's just trying to prepare me for when he's home!

We've been having some computer problems but I'll try and post a few pictures from our Mother's Day weekend with my parents.

Sunday, 5/8

Happy Mother's Day everyone! Today has been a special one for me. We had a nice brunch with my mom and dad, David, Katy and crew. The hospital has also helped us celebrate Mother's Day by providing food and t-shirts. However the person that has helped make this day the most special is that little baby boy. He's doing really well today and seems very comfortable. He's still having a lot of "bradys" but they do seem a little less than before. They are also continuing to wean his vent settings and are hoping to have him back on the "C-pap" settings by tonight or tomorrow. This morning when we got here his eyes were wide open and he seemed really alert. His eyes locked on his dad's while he sang him German lullabies. It has been a special day.

Saturday, 5/7

Today was a pretty good day for our little man. We had a really nice nurse, too, which helped me with my weekend phobia :) Too bad she's not back tomorrow! Dinky continued to have the drops in his heart rate but it always came right back up. They have been busy trying to figure out why he's doing this but as the doctor put it, she's more "annoyed than concerned". They really don't think it's hurting him at all. It's just a mystery. They were able to wean his vent a lot and are hoping to get him back to the c-pap settings on the ventilator by early this week. So overall he's doing really well!

"Ma" and "Pa" were by for a visit today. Martin and I taught them the art of "butt patting", Dinky's favorite activity. This really is the one thing that seems to calm him and there is definitely a technique! Martin and I have joked about hiring a 24-hour butt patter so someone can soothe him when we're not there. Anyone looking for a job? :)

Friday, 5/6

Thank you all so much for your sweet comments!! We are just exhausted today. They have little "sleep rooms" at the hospital and we stayed there last night just to make sure Dinky was getting through this post-op phase okay. They keep telling us he's doing well but it's so hard to believe that when you see him so sedated and with a tube coming out of everywhere! Poor little thing. The only issue today has been multiple, multiple "bradys" (where his heart rate drops). It drops pretty low (to about 70-80 when it's usually 120-140) and then comes right back up. They think it might be related to the tube that's connected to the ventilator. When it's really low it pokes on the little area where his lungs stem from and causes his heart rate to drop briefly. It's unnerving. I think sometimes the doctors and nurses (as patient as they all are) get frustrated when we ask for constant reassurance that "this and that are not concerning" and that he's really okay. But I think sometimes they forget this is normal for them and that they see it everyday, and it is okay, but as a parent it's the furthest thing from normal and is so hard to see. I have definitely learned so many lessons that I will take with me when I eventually get back to work. Anyway, I'm tired, so before I get too philosophical on everyone I'm going to go eat and sleep!! Again we cannot thank you enough for your prayers these past few days.

Thursday, 5/5

WHEW! WHEW! One more time, WHEW!!!!

Dinky made it through his surgery with no complications!! This is SUCH a big step!! It was initially complicated a little bit by the fact that last night he lost his "central line" through which he receives a lot of his medication. These are not easy to get in and it was a big loss (this is the line that we went on our first "field trip" for back in March). So before they started surgery they had to put in a new line. Then they connected his esophagus. The complication could have been that there was so much space between the two ends that they can't be stretched together, but his two ends were just right there waiting for each other! It all went very smoothly. To quote the surgeon, "nothing went wrong". We are just SO relieved. Dinky is obviously very zonked right now but should start waking up sometime tonight. The "recovery" period for this will probably be about a week until we really know where we stand. Thank you ALL for your positive thoughts and prayers. (As I sit here in the resource center typing this I am listening to a bad muzak version of "My Way", but it's touching a chord today. Dinky is doing this his way (Martin's groaning beside me :), and he's teaching us a lot of valuable lessons!)

Wednesday, 5/4

Happy Birthday, Dinky! Three months ago today our little bundle of sheer determination (and joy) came into this world. These past three months have been challenging but they have been met with equal reward. We are so lucky. And I mean that.

Our little one's journey will continue tomorrow as he goes in for his third surgery. The plan is to connect his esophagus and his stomach. This is the second half of the surgery he had right after birth where they tied off the fistula that was connecting his trachea and esophagus. There had been some discussion of addressing some other things during this surgery (his airway, the diaphragm) but the surgeon wants to wait until we are absolutely sure how these issues factor into everything. His surgery will be at 8:30 in the morning so please keep us in your thoughts and prayers during that time. Again...thank you, thank you, thank you.

Love. 

My nostril's bigger because of that tube that was in it! 

Tuesday, 5/3

Our poor little baby. They tried extubating him today and he couldn't do it. It's hard to decipher the exact reasons why, it seems to be a combination. He has several factors working against him: chronic lung disease, his windpipe is just weak and immature, and his diaphragm doesn't work properly. These factors coupled with the fact that he got very mad when he sensed he wasn't getting the same airway help as usual and he "clamped down". This made it harder for him to breathe so they had to reintubate him. My heart is just broken. I was so hopeful that our little guy could make it without that machine and that tube in his nose, that he could be more of a baby. It's just not time. Hopefully soon. For now he's still scheduled to have his surgery on Thursday.

This will be my only update today but tonight when we get home I will post a picture. We had a a few precious moments of seeing our baby without all of that tape and plastic and managed to get a few quick pictures. I knew he was cute but he is cute! It has been a sad day but I can't help but smile when I picture that little face. He gave it his best shot.

Monday, 5/2

Today was a big day for our little man. Let's see if I can try and explain. They wanted to test him on C-pap (continuous positive airway pressure): Air is delivered to a baby's lungs through small tubes in the baby’s nose. The tubes are attached to a ventilator (respirator), which helps the baby breathe, but does not breathe for him. They wanted to do this while he was still intubated (the tube down his windpipe) so they just put his ventilator on C-pap settings. So basically Dinky was taking all of his own breaths but the c-pap setting still gave his lungs a little pressure. He did great! His oxygen remained at room air settings and he still "sated" almost 100%. They are putting him back on the ventilator overnight but the plan is to try and extubate him in the morning. This means they will remove the tube that's in his windpipe and he will no longer be "vent dependent". This is HUGE!

The fact that he did so well today gives them a pretty good idea that his diaphragm probably works a little more than we thought which is great news. We're still not sure how the little "flap" in his windpipe factors into all of this and so that will be the big question tomorrow.

He is tentatively scheduled to go to surgery on Thursday which will definitely put us back a few steps but it will be so encouraging to go into surgery knowing that he can get to this point.

Sunday, May 1, again

After awaking from a Snow White sized sleep I feel compelled to add that that was Martin's debut posting :)

Sunday, 5/1

Things were pretty quiet today, so Dinky decided to open his lovely eyes and pose for some photos. We can't tell yet if his eye color is blue, green, or brown ... he's our little chameleon. As you can see, he's also a sharp dresser! In the picture below, he's attired in his blue snowflake robe, which he likes to don after a hard day in the office. The look is complemented by a debonair cap ... "men's hats are making a comeback this Spring", he predicts :)

Dinky with Open Eyes