Thursday, June 30, 2005

Thursday, 6/30

Oh boy. One day I promise to stop writing reports that are anything less than glowing. Dinky is fine but had another "spell" today. Even if they are less severe I think each one gets harder. He was crying very hard and started to "desat" (his oxygen rate went really low) and he started turning blue so they had to give him a 100% oxygen briefly. His heart rate dropped but fortunately only for a second. So he didn't "code"...he "spelled". Within a minute he had recovered. They did an x-ray and found that his lungs were not as well inflated as they had been. This morning they had decreased his oxygen to 1-1/2 liters but after this happened they went back up to 3. I am feeling frustrated because the main thing I want is a concrete answer of why this happens and more importantly, when it will stop. I am seeking something that no one can give me. The main thing I keep hearing is this is just the nature of chronic lung disease...for now. I can't describe how scary this is. I had just gotten to the point that I could watch him cry without fearing that it would result in something like this and now that security is gone again. Our poor fella. I keep teling myself that one day these episodes have to end. They have to. Period. Hopefully we are back on track and we can go back to the good ol' days :)

On a side note...Happy birthday wishes to my dad and brother (and my friend Sue and cousin Kristen)!!

Tuesday, June 28, 2005

Tuesday, 6/?

Things continue to go well, very well, for our SEVEN POUND BABY! Yay! He finally hit the mark. So he's gained 5 pounds since he was born. His thighs are starting to get chunky which is just a wonderful sight! Yesterday they weaned him down to 2L of oxygen and he's doing great. Because he's on a lower level the tubing is smaller so it's even easier to get him in and out of bed. They are also working on weaning his morphine. All in all he's really doing fantastic.

All of that is to say we're nervous about the end of the week. I think I mentioned the surgeon wants to take him to the O.R. for his next esophagus dilitation. Hopefully he will be able to do this without a setback. It will be Thursday or Friday, we'll let you know.

A very big thank you to "ma" and "pa" for making our new house feel like home. They have spent the past 2 days unpacking, decorating and hanging blinds. It has been a huge help. My mom and I even went grocery shopping today! It's the first real grocery shopping run we've done in almost 5 months! I'm proud to say that tomorrow Martin will enjoy his cereal with milk!

I cautiously say that we are starting to see the light at the end of this very long tunnel.

Sunday, June 26, 2005

Sunday, 6/26

Whew! It's been a whirlwind weekend! Yesterday was our big move which went well. We've already been pestered by a neighbor about trimming our shrubs but other than that I think we're going to like it :) Our friend Pat who we met while at RWJ came and sat with Dinky during the day yesterday. They had a great visit and it was so comforting knowing she was there when we couldn't be.

Today Ma and Pa came to the hospital and both got to hold Dinky. It's the first time they've seen him off the ventilator. He played the part of cute little grandbaby quite well I must say.

He had a great weekend. He gained some weight....and lost some weight....and gained some weight, but kept trucking right along! They really didn't make any changes this weekend but I think they will this week so I'll keep you posted.

Friday, June 24, 2005

Friday, 6/24

Just a quick update because the computer will probably all packed for our move (tomorrow) by the time I get home. Dinky's doing well today. Catching up on lots of sleep. He did have his esophagus dilated this morning and that went well. This will probably be the last time they are able to do it at the bedside. His surgeon plans to take him to the O.R. in a week and a half or so to have a more controlled environment. On the plus side, no pun intended, he gained 250 grams last night! We don't really believe it was that much but it's a gain none the less!

Wednesday, June 22, 2005

Wednesday, 6/22

Today was a good day, or a good half day for me! Martin went in early and I stayed home and packed for a while. A little role reversal that I think did us both some good. When I got there Dinky was fast asleep in his daddy's arms.

The highlight of the day is something that got everyone in our room laughing. Martin was changing Dinky's diaper and, those of you know Martin know he likes to take his own sweet time with things. Well, Dinky was having none of that. He was in the middle of changing him when Dinky pooped in a very projectile fashion! It was the shot heard 'round the NICU. We were all laughing so hard even the charge nurse peeked in to see what was going on. Unfortunately (or fortunately) Martin caught much of it in his hand. The rest went on the bedside cart at the foot of Dinky's bed. And I do mean top....to bottom! Our poor nurse had to give up her drink for fear it had also been hit. Needless to say Dinky was very content after that and fell into a deep sleep.

Driving home from the hospital (in the rain) we saw a beautiful full rainbow. What's so special about this is that I saw it. A month ago I'm not sure I would have noticed or taken the time to admire it. The fog is definitely lifting.

Tuesday, June 21, 2005

Tuesday, 6/21

Today was a fun day. We gave Dinky his first tub bath, or bucket bath. He wasn't quite sure what to think of it at first but seemed to enjoy it by the end. Afterwards he was all smiles (of course until we tried to take a picture of him smiling :) The rest of the day he just snoozed away. We're hoping all that sleeping was a sign of a big growth spurt!


He'll get us later for this one! Posted by Hello


Michelle (the tickler), Heather, and mom give Dinky his first tub bath (dad's helping, too!) Posted by Hello


Showing what he thinks about bath time! Posted by Hello

Monday, June 20, 2005

Monday, 6/20

Things continue to go well for our little one. They are starting to work on weaning his morphine. Hopefully that will go okay. He was a little fussy today but it seemed like normal baby fussy. He really settles down when he's held which is hard on me because it's making me want to be there 24-hours a day to hold him!

They are starting to try different things to make him gain weight. While it may seem like he's gained a lot since birth, and he has, it has still been less than what it should be. We've been stuck at 6-1/2 pounds or so for a long, long time. So hopefully these new techniques (increasing volume and calories) will help. They doctor did say that the Dinky sends his nutrients to the areas where he most needs them and that the reason his head is disproportionately large is that his brain is growing. He seems really smart to me so hopefully his scrawny little arms and legs will catch up!

We had a really special Father's Day yesterday. They had a brunch for the dads (moms, too!) and Martin got a t-shirt that says, "My Dad's a Winner". The most special gift we got was that gummy smile that we showed you. We also wanted to share these other pictures with you. It was a great day.


Dinky getting chest PT which he loves! Posted by Hello


Father's Day Bonding Posted by Hello

Sunday, June 19, 2005

Friday, 6/19

HAPPY FATHER'S DAY!


Gummy Bear Posted by Hello

Friday, June 17, 2005

Friday night

I just had to let you know that I got several of the coveted smiles. He's smiled many times but these are the first ones I've gotten that were a direct reaction to something I was doing. You have to tickle just the right spot on his leg and he just grins from ear to ear. It's so big you're just waiting to hear the giggle. Soon.

Friday, 6/17

Just wanted to let you all know that the dilation of Dinky's esophagus went well. It was done in about 5 minutes and Dinky tolerated it as well as any of us would having something stuck down our esophagus. He'll probably have it again next week. What they are trying to do is make his esophagus bigger. This is a very common complication for babies with a tracheoesophageal fistula. Unfortunately he hasn't smiled as much for me as he did for Michelle last night. He's having some...ahem....poop issues (I think that's the exact medical term) But we are definitely still having a good day. They discussed lowering his oxygen but decided against it. They don't want him to focus on breathing right now, just growing. So they just want him to be as comfortable as possible. Hopefully this roll that we're on will continue into the weekend and beyond!

Thursday, June 16, 2005

Late night Thursday

We just got an e-mail from one of our very special nurses that I wanted to share...

I just wanted to give you an update of your little one as of when I left tonight…at 830. This time however, nobody was misbehaving. I was actually ready to go at 810 but as I went by his bed he was bright eyed and bushy tailed in his bed just entertaining himself. So I went to say goodbye and tickled the back of his thigh and he gave me the biggest smile ever….and continued to smile for the next 10 minutes. When I put him down he voiced his complaints so I sat him back up and went back for the thighs and again he was all grins. I wanted to call you so bad but I did not want to scare you guys. He was sooo cute. I just wanted to let you know and remind you to put today in “the books”. I hope you get this tonight, hopefully it will make for a good night’s sleep. Good luck tomorrow, I think he will do just fine…

Thursday, 6/16

We had such a great day with Dinky today. While we love days like today they also make us nervous. We've gotten too accustomed to the bottom falling out once we get on a roll. I'm trying to live in the moment and just relish our day today. We held Dinky for about 4 hours this afternoon and he rested so comfortably. He really is a snuggle bunny. He continued to be very expressive with his raised eyebrows, my mom said he takes after his Uncle David when he was a baby. All in all it was a great day.

Tomorrow the surgeon is going to dilate his esophagus at the bedside which is a little nerve racking. You may have noticed in the pictures we posted that there is a string in his mouth. Yes, a string. That string goes in his mouth, down his esophagus, and out his g-tube site. Tomorrow they will connect the dilater tubing onto the end of the string and pull it through his esophagus. I'm nervous about this because it doesn't sound pleasant and I know he's going to protest. I'm still anxious about whenever he gets really upset that his airway will collapse. I know there will be good doctors around so hopefully it will go off without a hitch.

I have to take a moment to say thank you to so many of you. My guilt is starting to get the better of me. So many of you have done such special things for us and every day I intend to sit down and write proper thank you notes. Now I'll never catch up!! Just please know that every gesture has just meant the world to us and has helped us get through the first leg of this journey called parenthood :) Thank you, thank you, thank you!!!

Wednesday, June 15, 2005

Wednesday, 6/15

Dinky was doing pretty well today so I was able to sneak out of there and make it to our closing. It also helped that he was left in good hands with one of our favorite nurses. The few hours I was able to be there were very productive.

I did meet with our surgeon. It was a good conversation but he wasn't able to offer me all of the reassurance I was looking for. I was hoping he could tell me that Dinky's coding was an isolated incident that won't ever happen again but he couldn't. He explained that Dinky has several things against him, each of which is a "10% risk". So with Dinky's five it just compounds the risk: his tracheomalacia, chronic lung disease, esophageal stricture, reflux and his aortopexy. It is just going to take time for him to grow out of the risk. He did reassure me that he's in the best place if his airway does become compromised. So basically we just need him to eat and grow, grow, grow. His weight gain has not been that great but there hasn't been a long period of time where he doesn't do anything but eat, sleep and grow.

We also talked about Dinky's new G-tube. I can't remember if I mentioned this or not, but because of his reflux he is now being fed into his intestines rather than his stomach. This will prevent formula from traveling up his esophagus. So they put in a tube called a G/J tube (gastric/jejunal). Anyway, long story short, part of the tube that was supposed to be in his stomach was in his duodenum (too bad I didn't take anatomy!) which is likely the culprit for his vomitting the past few days. I have to say, the minute they fixed it he was like a new baby. I was so relieved but frstrated at the same time that his suffering the past few days was needless.

Finally, the occupational therapist came by. They help assess development and teach us things like infant massage which we can do to help him. I was holding him while she massaged his arms and she commented that he was an "old soul". She said she can tell he's just very curious about his surroundings and quietly taking it all in. She felt like he was very "intelligent" and alert and very responsive to her interaction. While no one can predict what developmental issues we may encounter it was a huge relief to hear this feedback. He is a curious little thing. Remember how I have talked about how he would always raise his eyebrows and crinkle his forehead? Well, he has maintained this and it has become his most endearing characteristic. He is something else.

Tuesday, June 14, 2005

Tuesday, 6/14

Another late night. I'm starting to think Dinky knows when we're about to leave and starts getting fussy right about that time. I just can't leave until he's tucked in and settled. His personality is starting to really shine through. He's definitely his mama's boy! There's still just something nagging at me about him physically. I'm starting to think I'm just a paranoid mom so I'm trying to keep that in check. I'm hoping to meet with his surgeon tomorrow so I can get his thoughts on why Dinky coded last week and also find out what the plan is. And so we keep on truckin'....

Many of you may not know this but we also had to buy a house in the midst of all of this because our lease was up!! So we have our closing tomorrow. We will actually move on 6/25. That is definitely stressful. I have to leave the hospital early tomorrow which will be hard for me. One of our doctors also has to leave at 1 and said she's going to drag me out with her.

Monday, June 13, 2005

Monday, 6/13

It's late so I was going to skip tonight but my dear friends Shannon and Matthew called worried so I figured I better get to it! I actually just got home from the hospital, it was a late night tonight. Dinky just seemed "off" and after what happened last week I just couldn't leave. He was great this morning, I held him for about three hours. But this afternoon he threw up a little more and then just seemed to have a very unsettled stomach the rest of the afternoon/evening. I'm so scared about him choking while throwing up after he had that event last Friday morning. It's terrible because he's had "episodes" when he cries, poops, and throws up....that's all babies do! It has made me a nervous wreck. He finally looked a little less green and seemed to be resting comfortably so I snuck out of there. Hopefully he'll have a good night.

Sunday, June 12, 2005

Sunday, 6/12

Today was a so-so day for our little man. From a respiratory standpoint he did really well with his vapotherm oxygen and seemed very comfortable. He had a most impressive chest x-ray this morning :) However, other things didn't go so well. They inadvertently weaned his morphine...a lot. They switched from an IV dose to a g-tube dose (IV is much stronger) and they decreased the number of times he gets it per day. It was accidental but unfortunately no one caught it until he went into pretty bad withdrawal. They have a scale that measures "wean scores" which is based on things like being jittery, breathing quickly, yawning, etc. Normally his wean scores are about a 2 and today it was 10!! Poor little thing just got so miserable as the day went on. During the course of his being so uncomfortable he completely rolled over! It was nice to see that he has that much strength but unfortunate that it came out of pain. By the time I left tonight he finally seemed to be a little more comfortable.

The only other issue we're having is with his g-tube. On Saturday they went up on the size and it's irritating his skin and his stomach. So we'll be watching that.

We had a nice visit with David and Katy today. When Katy was in there with me Dinky had a huge throw up. It's the most he's had and it threw me for a loop. Katy, being the seasoned mom that she is, took it all in stride :)

Saturday, June 11, 2005

Later Saturday, 6/11

Well, we just got a call from the hospital. Of course when the phone rang we both held our breath. I am now feeling guilty because when the nurse said, "How are you?" I just said, "What happened?" Fortunately they were calling with good news. Our doctor just came by and decided to extubate Dinky. They said he did great with the transition (which can often be pretty startling). The respiratory therapist that was there said she's never seen a baby not cry when being extubated. He's just so happy to have that tube out! Now I can't wait to get there in the morning!

Saturday, 6/11

A pretty quiet day today. They were planning to take out the breathing tube but things were very busy so they didn't do it. I think the doctor wanted to be sure to have plenty of time to focus on Dinky (understandably) and because he was covering the whole unit could not do so. He's not there tomorrow so the plan will be to try on Monday. If he is extubated successfully they will hold off on the bronch assuming that that means his airway is still okay. If he's not extubated successfully this will point more towards the aortopexy having failed and so then they will do a bronch. We'll just have to wait and see.

Unfortunately the waiting is hardest on our little man. He is so frustrated to have that tube again. When he's intubated you can't hear him make sound and you can tell this is frustrating to him as well. He'll start crying and when he doesn't hear anything he starts crying even harder. The crying without sound is definitely harder to watch.

On the bright side they did start feeding him again so hopefully we can start working on him gaining weight. It was shocking today when a new baby was admitted that looked so tiny. The nurse asked if I remembered when Dinky was that small and I said that Dinky was never that small. But it turns out that baby weighs 300 grams more than Dinky did at birth. That definitely put things into perspective. He's come a long way, baby.

Friday, June 10, 2005

Friday, 6/10

It hurts me so much to do this because I know how much you cheer for our great days and likewise I know you hurt right along with us on our bad days...unfortunately our little hero had a bad night. Before going into the details let me first tell you he is now stable. We got the dreaded phone call at home at 4:26 this morning that Dinky "coded". This time seems to be worse than the others because they actually had to do CPR, or chest compressions. They did this for under 2 minutes which, while concerning, is not considered a "dangerous" amount of time. Unfortunately they had to reintubate him and he is back on the ventilator. While we have relished this past week it makes this even harder because he has now experienced a week without that tube. He has been a baby for the first time. You can truly just see the confusion in his eyes. It is heartbreaking.

Unfortunately our surgeon is out of town so we are not able to get his input on what potentially happened. But based on all of the information we have gathered from our neonatology attending, this is not an automatic sign that his aortopexy did not work. We will not know for sure until this Tuesday when they will repeat the bronchoscopy. When they reintubated him they did see formula in the back of his throat so they think he might have aspirated some into his lungs. I have mentioned the past few days that we were concerned about reflux, well it seems that he might have started to have some and then choked on it and "clamped down". When I hear "clamped down" it makes me think that his airway is not repaired but the doctor reassured me that even a baby without the tracheomalacia (floppy airway) can clamp down under the right stimulus. So...........basically everything is up in the air. We will just have to wait out the weekend and see what happens on Tuesday.

I know this is not just our baby, that we share him with you. There are times that this truly seems overwhelming. This is one of those times. But because we can share this with you, and because you unfortunately carry some of this load, we are able to gather the strength to get through days like today. Thank you.

Thursday, June 09, 2005

Thursday, 6/9

Just a quick note today. Dinky was much more restful. I think he might have been so fussy yesterday because he got his first immunizations. They are going to start him on a new medication for reflux so hopefully that will help. In the afternoon Martin and I got to hold him which was wonderful. Without the tube he's really able to snuggle up. All in all it was a much better day. We're counting the grams until he hits the 7 pound mark. He's at 6 pounds 10 ounces now! His weight gain has been slow so we're hoping that now that surgery is over he'll really start gaining. That's all for now...

Wednesday, June 08, 2005

Wednesday, 6/8

Not too much going on right now so I may go back to not posting every day unless there's something new to report. He has been very restless the past few days. We are thinking it may be related to reflux (which is very common with babies who have a tracheoesophageal fistula) so we're going to try and talk to the doctor about that tomorrow. He's very uncomfortable. An occupational therapist came by to see him today and she thinks the reason he's so ravenous about his pacifier is that he's trying to keep the reflux down. Poor little guy. Other than that he had a nice visit with Uncle David today and just hung out :)

Tuesday, June 07, 2005


Sorry! Couldn't resist just one more! Posted by Hello


Dinky Posted by Hello

Tuesday, 6/7

Today was a good day so we thought we'd share a few pictures. Trust me, he wasn't as quiet and peaceful today as he looks in these pictures! Mr. Cranky Pants gave us a run for our money. He had a very busy day and was wide awake for all of it. Martin and I got a taste of what it would be like to have him home because he really was fussy most of the day and by the time we left we were exhausted! I have to say we loved it, though. Like most babies he was fighting the urge to sleep and we were laughing like crazy watching him try and ward it off. Martin said he's stubborn and that he got that from me. Who me?!? Never! He had the ECHO looking at his heart, we're still waiting to hear how that went. Then he had his eye exam. The good news is they didn't see any signs of stage 3 ROP! This is great news. So now he can wait 2 weeks before getting them examined again. Besides his lungs another main focus is trying to get him to gain weight! This is going very slowly now. He's up to 6-1/2 pounds but hasn't really advanced beyond that in a few weeks. Maybe now that surgery is over he'll start gaining. Okay, I really didn't mean to write much today so I'll go now :)


New chair Posted by Hello


He's hooked! Posted by Hello


Mom and Dinky Posted by Hello


Eddie Posted by Hello

Monday, June 06, 2005

Monday, 6/6

I am pooped! One of the side effects of Dinky doing so well and being so alert is that I find it harder than ever to leave him! He had a good day today. He spent the day trying to eat his pacifier and just generally looking criminally cute. His breathing appeared much easier today. Over the weekend his respiratory rate (the # of times he breathes a minute) was pretty high but today it was much more relaxed. During rounds this morning the doctor said that now for the first time they can really focus on his lungs which unfortunately have some chronic disease from being a preemie on the ventilator for so long. For this reason they will wean his vapotherm (the type of oxygen he's on) very slowly to give his lungs time to heal and adjust. He warned me that this will be a slow process that you just can't rush. If I had to guess I would say we'll probably be in the hospital for a while longer. My hope is that we'll have Dinky home by his 6 month birthday.

The only new issue that I'm not expecting to develop into anything bigger is that he does have a slight heart murmur. They had the cardiologist come by today and they will do some tests tomorrow but hopefully it's just a "preemie" issue that will resolve on its own. Between these tests and another eye exam his calendar is full for tomorrow!

Finally, Dinky wanted to be sure and wish his "ma" and "pa" a happy 40th wedding anniversary today!

Sunday, June 05, 2005

Sunday, 6/5

In general Dinky had a good weekend. He has a few minor issues that we're a little concerned about. His blood sugar has been too low (after spiking really high the night of surgery). This could be related to the steroid that he received to decrease swelling in his airway or it could be an infection. They took some cultures of his blood and we are waiting to see if they "grow" anything (it usually takes 48 hours). The second issue is that his lungs have some fluid in them. It's hard to say what's causing this but hopefully it will resolve on its own. It was hard today because none of the doctors that were covering today know him well so we couldn't get a lot of information.

Other than that he continued to work on his newfound cry and it can be quite impressive at times. Yes, we still laugh whenever he cries. It is the cutest thing. He also seems startled by other sounds he makes...a cough, a sneeze...these make him cry as well. He had some little spit up today. I told him there are pros and cons to having your esophagus opened up and connected and that was definitely one of the cons. It's just about the first time stuff has been able to go from his stomach up to his mouth. I have to admit I am looking forward to the first time he spits up on me. Ah, the joys of motherhood. :)

Saturday, June 04, 2005

Saturday, 6/4

Four months ago today our little one celebrated his birth day. Twenty-four hours ago he celebrated a new "birth" day (as my mom said) by breathing on his own. He's doing great! He's down to 3L and seems to be very comfortable. He has the sweetest little cry that we have waited SO long to hear. He probably thinks he has a very unsympathetic mother because everytime he cries I just look into his eyes grinning ear to ear. It truly is music to my ears (we'll see how long I feel that way :) He's back up to "full feeds" and just moving right along. We put him in a little bouncy seat. He wasn't quite sure what to think about it, he's never sat up. He gave it about 15 minutes and then made it well known he wanted to try horizontal again.

What a few days it's been. Your prayers, "world conquering thoughts", and rain dances have done wonders. We thank you.

Friday, June 03, 2005

Friday, 6/3

Dinky continues to amaze. He had a great night last night and seemed very comfortable. I wish you could see the incision on his chest. It's so tiny, a little band-aid would do. And to think that through that tiny thing they were able to get to his aorta and do the work needed. It truly is amazing. We talked to the surgery fellow here about it today. Usually for this surgery they had to do a full thoracotomy (which Dinky has had 2 of already) where they completely open the chest wall. The chief of surgery here developed the technique they were able to use that avoids that. Dinky is about the 3rd baby here to have this type of surgery in the last 11 months. We are SO thankful to our surgeon.

So, true to their word, they extubated him this afternoon (removed the breathing tube). They did this at 2:15 and so far so good. We are cautiously optimistic because there was the one other time where he was extubated for 4 hours. I think if he can make it through the night without getting reintubated I will breathe a sigh of relief. I will stay with him again tonight to keep a close watch! He's on something called vapotherm which is a heated and humidified oxygen. He's on 5 liters right now, which is a lot, but hopefully will go down tomorrow.

Again, thank you all so much for your support.

Thursday, June 02, 2005

WHEW!!!

We are constantly amazed by the sheer strength and determination of a little babe we call "Dinky". I tell you what, today the name just doesn't fit. I can't even think of a name that does him justice. He did great. Everything in the 4-1/2 hour surgery went great. First they dilated his esophagus which went okay although they are anticipating having to do it again in the future. Then the surgeon came out to let us know since that went well they were going ahead with the aortopexy. He described that as "touchy" and said he couldn't really give us a time estimate. We sat in the waiting room and waited...and waited. We were imagining a movie where they show images of the clock to show the passage of time as other parents come...and go. We waited. Finally the surgeon came out and told us that everything went well. They were doing a bronchoscopy as they did the procedure so they could see how things were going and, right on cue, they watched the damaged part of his airway open up. Dinky tolerated everything great and didn't even need blood! They took him back to the NICU where everyone got him settled back in and glowed as we all celebrated his strength. One doctor said, "I've never seen a baby come back from the OR looking so good". And then one doctor, our surgeon, smiled. That smile spoke more than words ever could. In the 2 months we have known him we haven't seen that and today, let me tell you, it was sweet.

So...because things went so well they are wasting no time in moving him along. The plan is to let him wake up throughout the day and night and keep him comfortable but not "snowed". Starting at midnight they will give him steroids to decrease any swelling in his airway and tomorrow they will try and remove the breathing tube. Wednesday was a big day, today is a big day, and tomorrow will be a big day. Thank you ALL for your prayers and positive thoughts. They worked.

Wednesday, June 01, 2005

Wednesday, 6/1

Unfortunately today was not the calm, preparatory, pre-surgery day we were all hoping for. This morning Dinky had another one of his "episodes" and we still aren't sure what causes them. Not to make light of it but they do somehow seem to be related to pooping. They seem to occur when he is really trying to poop and then he gets upset and "clamps down" and his heart rate and his oxygen levels plummet. Today it happened right as the nurse put him in my arms for me to hold him which made it all the more scary. She quickly put him back in his bed and because his numbers were so low they did call a "code blue". He wasn't truly "coding", meaning they didn't have to do CPR, they just wanted the doctors there..."stat". So everyone came running and within a minute he was back up. It's unclear whether this is happening because his airway collapses (which is what they will hopefully fix tomorrow) or if it's because his breathing tube gets dislodged and slides into the little "pouch" in his airway. He recovered well and they think he will be fine for surgery so the plan is still for tomorrow. He was his usual cute, innocent, pacifier-sucking self by the end of the day. The hope is that the surgery will resolve this airway issue. It better because poor little Dinky can't take many more of these "spells"....and neither can his mom!

He is the second case for surgery tomorrow so he'll go around 9:30 in the morning. The have warned us that if they are able to do everything the want to do it could take a while. Once he is safely back in the NICU and all tucked back in I will definitely let you know how it went. Thank you ALL for your love, prayers, and support.