Thursday, 3/31

Continuing to be true to its word, today the "roller coaster" continued. Yesterday I was so encouraged when I left the hospital. Dinky's lungs were open, it was warm outside, I really did feel hopeful. Today seemed to be just the opposite. When we got there this morning the first thing we learned was that Dinky's lung had collapsed again. They put him back on the "jet", a high frequency ventilator, to try and open it back up. But obviously yesterday was not the magic bullet we were hoping for. Because he was a little unstable he didn't go downstairs for his test. He was very upset when they swiched him to the jet. He was crying (although there's no sound) and really fighting so they had to sedate him quite a bit. It is just so painful to watch. There really are times when I think I just can't do this anymore but then I look at that little fighter and he gives me the strength to go on. Thank you all for your continued support.

Wednesday, 3/30

Whew. A big day today! Dinky had his bronchoscopy which took about an hour and a half. He was fighting the procedure so they had to sedate him quite a bit. Poor thing was out of it the rest of the day. The "bronch" did give us some new information which will hopefully be helpful in getting him off this ventilator! I will try my best to explain it...

1. A "pouch": At the area near where they fixed his fistula (the connection between his trachea and esophagus) there is a little "pouch" into which air goes rather than traveling on down the trachea into his lungs. It's a "waste" of air because it pools in there, along with secretions, making it harder for him to effectively breathe. So, they pushed his ET tube down below this pouch so the air won't continue to hang out in that little pouch.

2. A lot of secretions: Another feature of the bronchoscopy is you can suction out secretions more deeply than you can with other techniques. She was able to get out quite a bit so this really cleared him up.

3. A collapsed bronchus. A bronchus is "one of the large air tubes leading from the trachea to the lungs that convey air to and from the lungs. The bronchi (the plural) have cartilage as part of their supporting wall structure". So because his bronchus is collapsed, air has a very hard time getting to his left lung. Therefore, his left lung is almost always in some state of collapse. So, they have increased the pressure setting on his ventilator and made several small changes that will try and keep this bronchus open. The goal is to "mechanically" keep it open until his cartilage is repaired enough that it can sustain it on its own. If this doesn't work (they couldn't give us a time frame on how long it might take) he'll need a "stent" placed. This is basically a piece of plastic that would keep the bronchus open allowing air to fill up the lungs.

Whew! So there you have it. I have to say it was pretty remarkable the change in him after this procedure. Before the "bronch" his left lung was almost comletely collapsed. Shortly after the bronch it was completely open. He probably had one of the best x-rays he's ever had. He was also at 98-100% (his oxygen saturation rate) with only 21-25% oxygen. That's quite a change!

Another exciting thing (maybe) about his x-ray is that his diaphragm appeared equal on both sides. Remember that the rigth side of his diaphragm is paralyzed so it has consistently appeared much higher on the right. It could just be the timing of the x-ray but there is that small chance that the nerve that controls the diaphragm could regenerate so we're hoping that's what we're seeing. As the doctor said, "He deserves a break", and this would certainly be a major one. We'll keep our fingers crossed.

Tomorrow he will go have "dye studies" where they will put dye down his esophagus and "trace" it to make sure there's not another connection like the one that was repaired right after birth. This will be another "field trip" as he has to leave the unit to have it done. The procedure itself should be pretty minor but this "trip" is always a bit nerve-wracking.

I know this has been long, but it was a long day :) Hopefully we are coming up to the corner that we really need to turn!

Tuesday, 3/29

Today was a good day. Dinky had very few episodes and the ones he had were generally directly related to receiving care. The big milestone is that he's finally able to open his eyes again! While this has been anxiously anticipated by us for several weeks it actually makes me sad. With those little eyes gazing up at me it made me feel a little more helpless than I already felt. I was comforted by the fact that he seems to rest very comfortably when he "naps"...especially on his belly.

The bronchoscopy didn't happen today which I wish I could say came as some surprise...but it didn't. The plan is for tomorrow morning. All in all it was a pretty uneventful day.

Monday, 3/28

Today was quite a frustrating day. Dinky was a little up and down because he had some collapse of his left lung. He had several "episodes" and was requiring a little more oxygen than usual. He was a little better by this afternoon.

Adding to the frustration was that what we had been told since last Thursday was the plan for Monday...didn't happen. As with most teaching hospitals the attending physician changes every 2 weeks and often can change throughout the course of a week (especially on a holiday). With the change in physician usually comes a change in plan which can prove very frustrating. We were anticipating that Dinky would get the dose of Indocin to treat his PDA but the current physician didn't think that was a high priority. So it's difficult to be "flexible" on a day to day basis when one day you're told something's a priority and the next day it's not. My head is starting to pound again even thinking about it so I think I'll leave this paragraph at that :)

The "plan" for tomorrow is to do a bronchoscopy to check to see if there might be a connection, or "fistula" that was missed early on. Dinky was born with a fistula, or connection, between his trachea and esophagus (this was fixed in his first surgery) and the concern is that there's another one and that that's what's causing the frequent collapse of his lungs (because too much fluid passes from his esophagus into his trachea and then into his lungs). The "bronch" is a "procedure in which a tube with a tiny camera on the end is inserted through the nose or mouth into the lungs. The procedure provides a view of the airways of the lung". They are able to do the procedure at his bedside so it shouldn't take too much out of him. There was a bit of a delay in doing it because they had to wait until the teeny tiny bronchoscopy instrument arrived. So we'll be anxious to get the results of this.

To be continued...

Sunday, 3/27

Happy Easter! We had a nice brunch w/ my parents and David and Katy and crew before heading to the hospital to see our little Easter bunny. He was doing well today and there's really nothing new to report. Tomorrow he will get the medicine to try and close his PDA. We hope this will work although we know the chances are slim and that he'll probably require surgery. But today he really had a quiet day.

Since there's not a lot to report we wanted to take the time to thank you all for your support. We have truly been overwhelmed by the number of people that take the time to read the blog and pray and think about us. We can't tell you how much that has helped us during these last 7 weeks. This has been such an education for us. I remember when we toured the maternity ward at Princeton, where we thought Dinky would be born. They showed us the "special care nursery" and I turned to Martin and said, "I can't imagine". Little did I know that 4 short weeks later we would be not in the special care nursery, that at the time seemed so unimaginable, but in the neonatal intensive care unit. And while this has been such a difficult time it has been an education in trust, patience, love, strength, bravery and joy. Dinky is the teacher and we are his students. And you, our family and friends, are the glue that is holding us together while we learn these valuable lessons. And we thank you.

Saturday, 3/26

Today Dinky got to see his "ma" and "pa" again. They hadn't seen him since he was about 2 pounds so he was proud to show off his extra poundage. He especially looks the part of the angelic grandchild while he snuggles up on his belly. He is very cute.

He continued to do well today. They had been weaning his fentanyl (the sedative) and he didn't do as well with the last reduction (he seemed very agitated) so they upped it again. He was resting comfortably shortly after that. They also increased his feeds and he is now at 15.5 mL an hour!! His "episodes" seemed to be limited to activity so he really seemed to be respirating well.

Other than that there is not a lot of news to report. And while we're anxious for him to make progress we'll also settled for a few "no news is good news" days.

Friday, 3/25

Today was a good day with Dinky. Neither one of us held him today because it really takes a lot out of him and we wanted to give him a little rest. Soon! Thank you all for your sweet, sweet comments. It truly was an incredible experience.

He was doing well today. He did have a few episodes but they seemed to be a direct relation to needing to be suctioned, or being upset when they are doing something with him, and he recovered very well once that stopped. Other than that nothing has really changed. He continues to be at "full feeds" and is stable on the ventilator. They tried switching him to a different ventilator yesterday and he tolerated it for a while but then they had to go back. It was still a conventional ventilator but the settings were much lower. Today he is pretty much back where he was before that change. I really just don't know if he's going to be able to come off the ventilator until his diaphragm is fixed.

The main issue right now is his PDA. This is the open duct in his heart. We've known it was open for a while now but it seems to be more of a problem than in the past. It has gotten a lot bigger. They will try one dose of Indocin on Monday (one of three...he's already had 2 complete rounds of this without success) and then do an ECHO to see if it is working. If it's not working they just won't try the other 2 doses because there's a small chance of it working. It becomes less likely when you are doing it for the 3rd time and also he's getting a little older which also makes it less likely to work. Unfortunately if it doesn't work they will have to do surgery. The catch here is that right now they don't do this surgery at the hospital where he is and he may have to go to Columbia in NYC. They are starting a program where the doctors from Columbia come here but we don't know if it will be up and running by then.

On a lighter note...if you have ever changed a boy's diaper you know the "risk" you run if you get distracted. Well, Veronica, Dinky's favorite nurse, got caught up gazing at his face while changing his diaper and got quite a shower. She said she even had to change her scrubs! She got such a kick out of this. She's a gem.

Thursday, 3/24

As you can see, today was my favorite day of all. After 7 long weeks, I finally got to hold my son. Unfortunately Martin was out of town and didn't get to see it, but once they offered I just couldn't say no! It was amazing. I finally got to feel him and smell him. It was amazing. He did really well, probably better than me. It truly was amazing. I think that's all I'll write tonight.

Holding Dinky 

Finally! 

Wednesday, 3/23

Well, a pretty good day today. We seem to be holding steady and there really isn't much of a change. I was hoping he would get out of isolation today and his third culture was negative, but the lab wants a nasal swab instead of the swab from his "ET" tube so maybe tomorrow. I'll be so glad when he's out of there! He seemed comfortable today, on his little belly. He loves sleeping that way and is more restful than I've ever seen him. Maybe I should try that and get some rest, too :) His feeds are up to 14 mL an hour so that's great! They are trying to wean him off the Fentanyl (sedative) and as long as he remains comfortable they feel like it's better if he's not so "snowed". We'll see how it goes...

Tuesday, 3/22

We had our meeting with the surgeon today. This wasn't to really get concrete info, it was more just to start a dialogue between everyone. The basic outcome was that we are still about 4 weeks away from another surgery. This will give him time to get rid of his current infection(s), give his lungs time to heal, and for him to grow stronger and bigger. He is now at about 4 pounds. There are still some differing opinions about why his lung function is so poor and so some of the next four weeks will also be spent doing further tests for that. I'll let you know more about these as they come up.

All in all he is doing pretty well. The culture for his RSV has been negative for 2 days so hopefully we are almost in the clear for that. It has to be negative for 3 days before he can come off isolation. I am looking forward to that! His oxygenation continued to be good today he is just still requiring high vent settings. We'll get there, little buddy.

Monday, 3/21

Ahhhh! That's my little sigh of relief because today was a better today. Dinky really seems to be feeling better and that little feisty spirit is showing thorugh again. His nurse commented today that when they put his Nystatin medication in his mouth he tries to spit it out as opposed to when he's feeling sick he doesn't do that. Although his vent settings are still on the high side is oxygen requirement is very low again which is good. He's lost the majority of that swelling so he looks like our old Dinky again. In fact they want him to gain more weight so they've upped his feedings even more to 13.5 mL an hour!!

The best news of the day was that he had his first eye exam and it appeared normal. The doctor said his eyes just look premature but there are no problems outside of that (a big relief as eye problems are common with premature babies). I also met with the pulmonologist again today. There are definitely concerns about his lungs as he has more "atelectasis" (where the alveoli in the lung collapse) than he should but we will wait until he gets out of this acute sick period (with the RSV and pseudomonas) to see how he recovers at that point.

Tomorrow is our meeting with the surgeon. We will be anxious to see what their plans are long term. We'll let you know....

Sunday, 3/20

Oh, Dinky. Now our poor little baby has a pseudomonas bacteria infection!! This is something that is fairly common in babies who are on the ventilator. It's hard to say how exactly it has affected him because his struggles the past few days could be due to this or the RSV or, most likely, both. To treat this he will be started on an antibiotic. Martin and I were saying today that Dinky must have read our "Preemies" book and just wanted to be sure he covered everything in there.

In general, he seemed comfortable for the most part. He spent a lot of time on his belly which is his new favorite thing. We are now in an isolation room because of the RSV so Dinky moved again. It's a bit of an inconvenience because we have to wear a mask and own whenever we're in his room so it's a little uncomfortable. I'll be glad when we get in our old room again...

Saturday, 3/19

That cute sneeze that we mentioned a few days ago was more ominous than we realized. Dinky has a new acronym to add to his vocabulary: RSV, respiratory syncytial virus. This basically means a "common cold" but in preemies it's much more serious. The bad thing is there is no treatment you just have to wait it out and the course is generally 7-10 days. We're not sure how long he's had it but it certainly explains his bad day yesterday and the diagnosis was confirmed in testing today. When we got there this morning he had been back and forth between the conventional and jet ventilator multiple times and his oxygen requirement was 86%!!! which is very high. We were all set for a hard, hard day. But then they put him on his tummy (for the first time) and it really seemed to make a difference. The thinking is that it loosened up a lot of the secretions that he had and made his breathing a little easier. When we left his oxygen requirement was down to 30%.

The good thing is he is still tolerating his feedings (13mL an hour) so we've made great progress on that end. We'll just hold our breath the next 7-10 days and hope we get through this latest hurdle smoothly. This kid deserves a break soon!

Friday, 3/18

Well, I wish we could end this good week on a good note but unfortunately today wasn't the smoothest of days. Dinky was really up and down from a respiratory standpoint. In the midst of it all they switched him from the "jet" ventilator back to the conventional ventilator which is a big adjustment. So it was a very unsettled day from that end. They also had a pulmonologist (lung doctor) come in to do a more thorough assessment of his respiratory functioning. Part of the reasoning behind this is that they keep "stalling" in terms of his resp. function. He gets a little better for a day or two and then either plateaus or backslides a little. They are also concerned about the mucus in his lungs and the large amount of thick secretions that they suction out of his mouth. So the pulmonologist will begin the process of working up different possibilities and ruling them out. One thing they are working up, and will hopefully rule out, is cystic fibrosis. We are certainly hoping this is not the case and will keep you posted as the "work up" continues.

One thing I want to clarify that may have been confusing from my previous post: the fact that we are meeting with the surgeon Tuesday does not mean he is that close to having his next surgery. The main doctor who is attending right now just wants us to meet with them periodically to evaluate where we are and where he might need to be before we explore surgery. But we are certainly weeks (if not a month or two) away from that point.

Thank you all again for your comments, support, thoughts and prayers. Can you believe it has been 6 weeks?? Our parenthood has definitely begun in a way we never imagined but we are so thankful for this little boy. I think Martin had all the nurses lulled in during "story time" today...I wish you all could have seen how red he turned when they called for an encore. It was a special, sweet, and funny moment. So while our days are hard, they are also filled with happy, joyous moments like that.

Thursday, 3/17

Happy St. Patrick's Day! Things were quiet on the Dinky front. He continues to have his "spells" but he didn't have to get "bagged" today. Usually they just had to give him a little more oxygen and he did better. They are still increasing his feedings!! He's up to 11.5! He is out eating what I can make for him so he'll probably get his first taste of formula tomorrow. I am trying desperately to catch up to him.

They may switch him back to the "conventional" ventilator tomorrow. He's been on the high oscillating "jet" ventilator for 2 weeks now. The current doctor feels this will be a good move in terms of continuing to try and wean him. We'll see how Dinky does. His CRP number is down to 1.5 today which is great! So, we feel like we're in the clear in terms of infection....for now.

The plan is for us to meet w/ the surgeon on Tuesday just to go over our long term game plan in terms of when he'll go back to surgery. This would be the surgery to connect his esophagus to his stomach (and "tuck" down his diaphragm if that nerve doesn't regenerate). We'll be anxious to hear what where they want Dinky to be before they feel comfortable operating. We have such a long way to go but look how far we've come....

Wednesday, 3/16

Today was a pretty good day for our little booger although he had a few rough patches late morning. He had several fairly significant brady and apnea episodes. There could be several factors contributing to this: he needs a blood transfusion based on some of his labs and the "ET" tube (connected to the ventilator)was too far down. After they fixed his tube he was a little better and hopefully he'll continue to improve after he gets his blood. Other than that there weren't many changes. We are again a little worried about infection. He has 8 "immature cells" (you're supposed to have 1 or 2) and that is concerning. They are doing more cultures so we'll see what happens with that. The doctor pretty much prepared us that another infection is inevitable at some point.

Dinky's favorite nurse is with him again tonight. She is so special and I sleep so soundly when I know she is there. She is working a few days overtime and when she calls in to see if they need her the question she asks before agreeing to come in is, "Do I get Ruef?" We are so thankful she's there to give him little back rubs and shampoo his hair.

Tuesday, 3/15

Sorry for the late update. Things continued to go pretty well today. Today was Dinky's first day without TPN and he continued to tolerate his feeds well. He was desating a lot earlier in the day because he was very awake and moving a lot and crying a lot (you can't hear it you can just "see" it which is so sad). He was also "fighting" the ventilator so they increased his fentanyl to sedate him a litte more. This seemed to help a bit. He's still swollen, especially in his head. In fact, after they moved him there was a thumb indentation in his head. Poor thing.

My favorite part of the day is that I saw him sneeze for the first time. It's amazing how much you celebrate these little moments. When I said "God bless you", it had an extra special meaning.

Monday, 3/14

Another good day today! Dinky was a little up and down in terms of his "A's" and "B's" (apnea and bradycardia episodes) but his oxygen requirement stayed low and in general he recovered quickly. The exciting thing is that as of tonight he'll be at "full feeds"!!! This means he'll no longer get TPN, just milk! This is a huge accomplishment! His nurse today commented on how feisty he is becoming. He tries to push or kick away her hand whenever she does anything. They all comment on how strong he is (and what a cute nose he has :) Several of the nurses were gathered around his "house" the other day commenting on his nose and I told them they were just being "nosy". I'm not sure they got it, it's a Moody thing :)

There's not a whole lot to report these days because they really are just trying to keep him stable on the vent until he grows stronger. His CRP was down to 2, that was good. His weight was up 10 grams which isn't bad. So all in all we're just "steady Eddie".

Nachrichten in Deutsch ...

Liebe Familie,

Diese Woche war fur Edison etwas wechselhaft. Er isst weiterhin mehr (ungefahr 170mL am Tag) und braucht in der Zukunft wahrscheinlich keine zusatzliche Nahrungstoffe. Es war auch scho:n dass Verwandschaft kam um Eddie zu besuchen (heute, sein Onkel David, Tante Katy, Vetter Nye, u. Kousine Ruby).

Anderseits, sind die Arzte noch besorgt das Edison eine weiter Infektion bekommen ko:nnte. Die Lage wird taglich durch ein Protein Test (genannt "CRP" test) gepruft. Bei hoheren Stuffen (2+) deutet der Test auf mogliche Infektion oder andere Stressreaktion des Korpers. Gestern lag Edison's CRP Zahl schon bei 7, ging aber heute auf 3.5 runter. Wir hoffen dass diese CRP sich weiterhin reduziert.

Am Freitag verlor auch Edison seine Urgrossmutter Omi, die kurz vor ihren 90. Geburtstag ins nachste Leben ging. Eddie muss jetzt mit den nachsten Generationen die Deutsche Sprache u. das Tanzen lernen.

Eddie macht langsam Fortschritte u. lasst in einer Woche wieder von sich (in Deutsch) ho:ren.

Herzliche Grusse,

-Martin u. Jen

Sunday, 3/13

Today was a nice, quiet day...just like we like it. Dinky's CRP level came down to 3.5 which was a huge relief! We think that number is reflecting inflammation vs. an infection. Dinky appeared very comfortable today and didn't seem to have as many "episodes" with the brady and desaturations. His feeding is up to 8.5 mL an hour! Pretty soon he'll just be getting milk and won't need the TPN anymore. That will be nice.

David and Katy came by for a visit which was great. The new NICU has a nice waiting room so Nye and Ruby had a "kid friendly" place to hang out during their visit. Nye drew a great picture of Dinky even though he's only seen his picture. We really enjoyed their stopping by.

A new doctor starts with Dinky tomorrow. We'll really miss the doctor that's been on the last 2 weeks but I think he'll continue to check in on Dinky.

Saturday, 3/12

Today was an okay day but we're sitting on pins and needles a little bit. The past several days they have been measuring a number called the "CRP" which is a blood test done to measure the risk of infection. It's a very non-specific test and can be affected by many things, but the thinking is that the higher the number, the more indicative it is of infection. Several days ago Dinky's was "2" which is somewhat high, however today it was 7 which is very high. He doesn't have any other clinical signs of infection but this number is definitely worrisome. His blood cultures were negative, which is great, but the took new cultures today to be sure. It can take up to 5 days for some things to grow, such as fungal infections, so it may be several days before we know these results. In the meantime, we're a bit anxious about all of this. Hopefully the number will be back down tomorrow so we can go back to reveling in his progress and his poop!

Other than that he's "eating" well, he's up to 7.5 mL an hour! He also lost another 110 g which is great! We can really tell the swelling is going down. He's also become quite the "busy body". His hands are always looking for something to hold onto (I think he was even doing this in utero as many of you will remember his heart rate dropped frequently, presumably from grabbing the cord) and he likes to try and hold onto the "et" tube connected to the respirator. Well, they are concerned he's going to pull it out so he got some makeshift "mittens". We definitely enjoy watching his little hands reach out and explore his little world. He still has difficulty opening his eyes due to the swelling, but he sure tries. You can just see those eyebrows go up in a concerted effort.

Hopefully we will be able to come back tomorrow night and tell you that his CRP has dropped significantly. We need this upswing to continue, but no one needs it more than Dinky.

Friday night, 3/11

Just wanted to give you our latest phone report. Dinky continues to be a star. He lost another 110 grams making his 2 day total 310 grams!! This is partly due to the fact that he had a long overdue poop. And he pooped...and pooped...and pooped! We are so relieved...and I'm sure he is, too :)

Friday, 3/11

Happy Friday! First of all, I know some of you have had a hard time posting comments, I don't know what's going on. I did email blogger support and they are looking into it. Thank you all again for your wonderful comments. We love reading them so hopefully they'll get the problem fixed soon.

We got a very good report today. The doctor, who is unfortunatly going off service today, said he is very optimistic. First of all, the blood culture is negative so far which is great news. And, Dinky lost 200 grams last night which is wonderful! Because of this weight loss they will hold off on steroids for now which they were going to give him to treat the swelling. He is continuing to eat well and is up to 6.5 mL an hour on the continuous feed. Dinky is still having the desats and brady episodes but the doctor isn't overly concerned about them. We'll continue to see how he does from that standpoint. But overall a very good report!!

On a personal note, I wanted to let you all know that Dinky's great grandmother in Austria passed away peacefully in her sleep yesterday. "Omi" was 4 days shy of her 90th birthday. Martin's dad had flown over for her birthday so he was able to see her before she passed away. Please keep his family in your thoughts.

Thursday, 2/10

Me again. Today was an "okay" day. Dinky was a little up and down with his heart rate and oxygen saturation rate, but somehow even with that he didn't seem unstable per se. His rates always quickly came back up and other than on 2 occasions he didn't get really low. Maybe I am just getting used to all of the alarming and the little scares. They think his "desats" (when his oxygen goes down) were due to tube placement (this seems to fluctuate as his swelling fluctuates) and he also has a little fluid in his lungs. So they're giving him a medication called Lasix to try and get rid of the fluid. His feeding has increased. He's now getting 5.5 mL an hour for 10 hours, break for 2, and then 10 more hours of 5.5. So that's great! The doctor said he has a few "tricks up his sleeve" to treat the swelling and that he thinks we'll see a big difference by Monday. I'm gonna take him to the bank on that one! Tomorrow we will get the 48 hours results of his blood culture which we are anxiously awaiting. If the culture hasn't "grown anything" we can feel fairly confident that he doesn't have an infection starting. That will be a big relief. So our Dinky keeps on trucking....

Wednesday, 3/9

Today was a much better day. Actually I don't think yesterday was as bad as it seemed but things got a bit complicated. He was having an "off" day for sure but the nurse who had him yesterday had never seen him have one. So I think she was overly concerned and spread that concern throughout the unit so it was getting back to me. It's a small unit so word travels fast. Martin and I met with the doctor this morning and while there are definitely concerns, they are no greater or smaller than they had been.

So today Dinky was pretty much just hanging out. That's our goal right now, to get him stable on the vent and eating a lot! They started him back on continuous feedings through his g-tube (gastrostomy tube that goes directly into his stomach) so he's getting quite a bit.

We did find out that the diaphragm is likely not working correctly because the nerve was snipped or damaged during surgery. It can potentially regenerate within 2 months however this seems a little unlikely. The more likely possibility is that when he goes in for his next surgery they can do some repair work so that his diaphragm will not impede his lung functioning as it is now. The only good part of this is now we know that this is likely what is causing his lungs to be so dysfunctional. Had this not happened we'd probably be in a much better position but at least we know it's not just because his lungs are that sick.

We are still working on the swelling issue. The latest hypothesis is that he has "leaking capillary syndrome" meaning his capillaries leak fluids rather than circulating them through the system. This can be treated with steroids. The issue is that steroids suppress the immune system and this is something we can't risk if he gets another infection. So they are going to wait a few days to try and make sure he's not "brewing" a new infection and then we may try this treatment. Until then his puffiness at least just appears to be something that is difficult to see but not directly impacting his stability.

So all in all it was a good day. Here's hoping that tomorrow's even better!

Tuesday, 3/8

When I went to the hospital today it was 50 degrees. When I came home it was 20 degrees and snowy. Unfortunately Dinky's day had the same highs and lows. The highs: the move went well and he seems settled into his new home. Today he also got to meet his Uncle David and Aunt Katy for the first time. That was the highlight of the day! The lows: everyone is pretty concerned about Dinky. His swelling has gotten a little worse and we still don't fully know the cause. The doctors are all putting their heads together trying to determine exactly what could be going on. His respiratory status was also unstable today. He had more episodes of brady and desats than he has recently. They are making some adjustments to the tube in his mouth and the ventilator to hopefully stabilize this. We also found out today that part of his diaphragm is paralyzed. Somehow the nerve that controls the diaphragm got damaged so the right side of his diaphragm doesn't move in unison with the left. We are not really sure how this will impact things long term. The doctor doesn't feel like it's a critical issue at this time. This is such a scary time and that little boy never ceases to amaze us with his strength.

Monday, 3/7

Today went pretty well. The most exciting part to me is that they started feeding Dinky again. In between his 2 meals he had a pretty busy day. The plastic surgeon came by to look at his wound again. It looks so painful. Unfortunately Dinky has the distinction of having the biggest IV infiltration (the cause of the wound) that the surgeon has ever seen. There's not a lot they can do but let nature take its course. It will just take time for it to heal. The goal is to prevent infection in the meantime. Then Dinky had a chest x-ray to check on his ever collapsing lungs. The vent is being adjusted to try and prevent further collapse. Next came a follow-up ultrasound of the head which is pretty standard. We don't have the results of that yet. So all in all he was a busy little bee today.

Martin and I went to check out the new NICU. It's very nice but it is very, very different than where he is now. They are currently in an older section of the main hospital in what used to be the adult ICU. They are moving tomorrow to the children's hospital and the unit is brand new. It's very bright and modern. It will be a big adjustment but hopefully a smooth one. They have lots of extra staff working tomorrow to facilitate the move. I saw how many people it took to take him down for his field trip last week so it's bound to be quite an endeavor. I'll be there first thing to supervise :)

All in all it was a good day. We did have a bit of a sobering talk with the doctor. While things are going well he reminded us that Dinky is still very sick, one of the sicker babies they have. He expressed his concern that a new infection could really take its toll on Dinky. So bump up those prayers and positive thoughts and let's get him through this critical time!! We can't thank you enough for all of your support.

Nochmals in Deutsch, Bitte!

Liebe Familie ...

Nachdem der "Blog" in Englisch etwas technisch u. unverstandlich fur Europaer ist, versuch ich Edison's Lage mal kurz in Deutsch aufzufassen. Am letzten Freitag, wurde Eddie (aka "Dinky") vier Wochen alt. Sein Sprung in die Welt fing am 4.2.05 (um 23:50) durch Kaiserschnitt an and war schon sehr Erreignisvoll. Eddie wog bei Geburt nur 965 gram u. lag zehn Wochen vor sein Termin. Am Tag danach, haben die Arzte festgestellt das er (mindestens) zwei Operationen brauchte. Die Erste war dringend, denn seine Esrohre u. Speiserohre waren verbunden (durch ein sogenanntes "Fistula"). Er wurde noch am selben Tag (5.2) operiert, da diese Kondition Lebensdrohend war. In den Tagen danach konnten wir nur hoffen das er die Operation uberstanden hat.

Am Ende dieser Woche (11.2) sah die Lage langsam besser aus. Eddie wurde weiterhin mit Atem durch ein Ventilator versorgt; aber sie haben schon versucht ihn durch ein Bauchrohre mit Muttermilch zu futtern. In der folgenden Woche konnte er diese Nahrung zu sich nehmen u. wog am 20.2 schon 1150 gram.

Leider kam danach eine gefahrliche Blutstrom Infektion (E Coli) auf Eddie zu. Wahrend der Abwehr gegen die Infektion, konnte er nicht mehr Muttermilch vertragen. Trotzdem nahm sein Korper enorm in Flussigkeitsgewicht zu. Ende Februar, war er sehr geschwollen u. wog 1710 gram.

Wir glauben jetzt das Eddie die Infektion auch uberstanden hat. Er vebessert sich langsam, kann jedoch nur mit Ventilator Atmen u. bekommt gerade keine Milch. Er wird mindestens zwei mehr Monate beim Krankenhaus wohnen. Wenn er stark genug ist dann macht er seine nachste Operation mit. Durch eine sogenannte "atresia" ist seine Esrohre mit sein Bauch noch nicht verbunden. Der Chirurg meint aber das mann diese Verbindung durch "ziehen" schaffen kann.

Weitere Nachrichten gibt es taglich in English u. wochentlich (am Sonntag) in Deutsch. Wir danken fur alle Unterstutzung.

Viele Grusse,

-Martin u. Jennifer

Sunday, 3/6

Another quiet day today. Dinky lost 70 g and we are thrilled! We were joking with our nurse that I'm sure we're the only parents in the NICU that want their baby to lose weight. The reason it's so good is it means he's getting rid of some of the swelling. You can definitely see it moving down his body. Yesterday it was concentrated a lot around the top of his head and today it has moved down more to his face. He's a puffy little thing! He has been pretty stable overall. Right as we were leaving this evening he had an episode of bradycardia (where his heart rate drops) which was disconcerting because it hasn't happened like that in a while. Hopefully it was an isolated incident.

The big day this week will be Tuesday. The NICU is currently in a temporary location because it is fairly new to this hospital. On Tuesday they will be moving to their permanent location in the children's hospital. It will be much larger than where we currently are. Martin and I haven't seen it yet but will be taking a tour tomorrow, one day before the big move. I am anxious about him and will be glad when it's all over!

One cute thing that happened today...I was trying to move Dinky's arm so that I could look at his hand (to check out his long thumb nail) and he absolutely would not let me do it! He's a strong little booger, especially considering he's on fentanyl! Looks like he inherited some of his mom's stubborness!

Saturday, 3/5

Story time 

Today was a nice, quiet day. It was calm enough that Martin was able to get in some story time with Dinky. While Martin read Dinky's oxygen saturation rate climbed from 90% to 98%!!! In general things went well. Dinky was very feisty today. He was moving his arms and legs more than we've ever seen him. He was also "fighting the vent" meaning he was trying to breathe a lot on his own. These are all good things...but not right now. For the time being they want him very still and letting the vent do all of the work for him so that his lungs can heal. For this reason they increased his fentanyl so he'd be more sedated. It was nice to see him so active, though. Not much else happened today. They're really just trying to let him have a quiet weekend after everything that he's been through.

Friday, 3/4

Happy birthday to you, Happy birthday to you, Happy birthday dear Dinky...Happy birthday to you! Yes, it's our little one's 4 week birthday. What a 4 weeks it's been. So today was okay. It got off to a great start when they start feeding Dinky again. We were thrilled! However, it was short lived. Dinky had been on a Fentanyl drip for sedation and pain relief purposes (sedation so he doesn't fight the ventilator and pain relief for the wound on his neck area). He can't be on the Fentanyl drip and "eat" at the same time as Fentanyl slows down the system too much. So they stopped the Fentanyl and started the feeds but later determined that the pain relief for that wound was more important, and also his blood gases demonstrated that he was fighting the vent a little. So it's disappointing but understandable. The mom in me just wants my kid to eat!!!

Otherwise he was pretty stable. They are having plastic surgery come back by to look at his wound. The thinking is that it may need to be "debrided", meaning the "dead" tissue that is on the surface of the wound may need to be removed giving new tissue a chance to form. This has definitely become more of an issue than we ever thought it would be.

I keep trying to type some sort of conclusion for this post and have deleted about 3-4 attempts. So I'll just say good night. "Good night". :)

Thursday, 3/3

Today was a pretty good day! Whew! We needed that and our little boy definitely needed that!! I thought it was going to be "another one of those days" when I got there this morning and found them switching to the high frequency ventilator again (this one's called a "jet" ventilator). It turned out to be just what he needed. The high frequency ventilator delivers hundreds of little rapid short breaths and is gentler on his little lungs. Within an hour his lungs had opened up on xray and and his blood gases were great. His monitor alarm kept beeping but for once it was because his oxygen saturation was TOO high, instead of too low (it alarms if he's saturating over 95% or less that 85%). We still have a ways to go to get him off the vent but it sure was nice to see him resting comfortably.

On the down side the doctor has a new theory as to the swelling in his head and upper chest. Initially they thought it was just fluid retention or a side effect of just being so sick with the infection. Then they thought it might be a blood clot but that continues to be ruled out with doppler studies. So now the doctor is wondering if it might not be because the PICC line that was in his head had somehow stopped putting all of his fluids (TPN, etc) into the veins as it should and if it was all just going into the soft tissue in his head. If that's the case it will be slow going in terms of it going down. Hopefully his urine output will continue to be good (they are giving medication to help this along) and little by little it will go down. Poor thing is so swollen he can't even open those eyes we love so much...but he sure tries!

We were feeling so "up" after leaving the hospital that Martin and I actually shared a nice dinner out together! The first in weeks. And then I bought my first pair of post-pregnancy jeans which was enough to bring me back down again :)

Wednesday, 3/2

Oh boy. Forgive the brevity of this post but we are getting a bit frustrated. Today was not a good day. Dinky had multiple episodes of bradycardia and desaturations (which we actually haven't had for a little while). It seemed to be a combination of very quick and significant ventilator changes and they increased the size of the "ET" tube that goes down his throat and which is connected to the ventilator. Also the doctors switched today so we are trying to get to know a new team in addition to all of this. All in all it was just a very frustrating day. When we left this evening Dinky did appear more stable and will hopefully remain that way through the night.

Tuesday, 3/1

Well, it was another eventful day in Dinkyland. Today he went on a field trip. They were having a really hard time placing an IV, and he kept losing the ones they placed, so he went to interventional radiology so the doctors there could put one in using ultrasounds and fluroscopy lights. It's very unusual for babies to leave the NICU so it was quite a production. It took 4-5 people (including the doctor) to transport him down there. They were able to place a line in his groin. This will help a lot in terms of administering his medications since he lost the PICC line in his head. This will also give his little veins time to heal from where he has had so many temporary, peripheral IVs.

Unfortunately while doing an echocardiogram today they did determine that his PDA, the heart valve, is still open. Unfortunately this is after 2 rounds of Indocin. It's looking like the likelihood of its closing with indocin is getting slim. We will have to talk about treatment options a little later on but it may mean another surgery.

The nurses who had him today were all commenting on his bravery. He has won over many hearts in that NICU.