Holding Steady

Gabriel finally got to sleep and had a restful night. He is continuing to make slow but steady progress in pretty much every area. He is taking 20 ml of breast milk, with orders to increase by 5 ml every 12 hours. If his chest tubes are still not putting out, then maybe by mid-weekish (I made a new word!) he'll get them out! They weaned the rate on the vent down to 20bpm, and will check his blood gas with another possible wean at 8:00 tonight. The neos are slowing down just a tad on the vent weaning since he is eating more now - just to keep from doing too much too quickly. He is also down on his morphine drip a little bit more as well (30 mc, he started at 40). All good news to report today!! He is not coughing quite as much today and his temp is back to normal, so hopefully we are out of the woods for infection, for now anyway.

He won't sleep!!

Gabe is definitely feeling better! He won't sleep! His eyes are always open and he is craning his little neck all around to see everything. Apparently he has been this way since about 4AM. I get him to sleep, slip out briefly and when I return he is wide awake again. It is pretty fun, but I am eating lunch at 2:45 b/c I couldn't leave him! Stacia, his nurse today, taught me how to do his tube feeding - I didn't realize how complicated it was. I watched yesterday, but I guess I wasn't paying as close of attention as I thought. She had me listen to his belly with the stethescope while pushing air in his feeding tube to check if the tube was placed correctly. Then I had to suction out what was in the stomach, disconnect the syringe from the tube - with the suction trying to pull the plunger back in - I felt like I needed more hands, but they do it all the time! Anyway, I figured it out, with lots of help, and fed him for the first time!! Then she turned him over on his tummy, I patted his butt and he drifted off to sleep - we'll see for how long! Josh and co. are on their way back up and should be here in a couple of hours. The temp is back down a little bit, so hopefully it doesn't come back up and we will continue to avoid an infection! OK, I am starving, so I am done here!

Still looking up!

He has done well with his first meals, so they upped to 15 ml and will go up to 20 ml later today. Still no breast milk, but maybe by tonight if he continues to tolerate the pregestinil and the chest tube output doesn't increase. We have kind of taken over the module freezer, so the nurses really hope he gets to start breast milk soon. The vent settings continue to be tweaked down and he has been weaned a litle more from his sedation meds. Dr. Duffy said his chest xray looked good, so I have all positives to report.

One possible issue the nurses are watching - his temp was up a little bit this morning and his secretions are up a little bit (they are having to suction him a little more). She said if it didn't go down in the next hour, she would get blood and urine cultures to check for infection. They say every day you are here, the risk for infection exists. We have talked to many families who have had to deal with that, rather unexpectedly (but I guess if the risk is always there, it really shouldn't be unexpected, but that is life in the NICU). So far we have dodged that bullet, we'll see what the day brings us! Thanks for the comments, we are excited about Gabe's progress and love hearing everyone celebrate with us!

I am posting some pictures from Gabriel's first tube feeding and some other misc. pics from the past weekend (yes, I am a bit behind).

First Meal!

Well...more of a first snack! Yesterday, around 4:30, Dr. Rouse came by and commented on how well Gabriel was doing and how little the chest tubes have put out (they have essentially stopped). He said Gabriel could start the tube feeds, but asked if they could start with an intermediate step - he's asking me? They started Gabe on the low fat formula (can't remember the name) that would hopefully not cause a flare up of the chylothorax. The reason I said snack is they started him at 5 ml every three hours (one oz -ounce- is 30 ml and a lot of 5 week old babies are taking up to 4-6 oz), but it is a start. Here is what we are looking for these first 24 hours on feeds: little or no spitting up, pooping, and no increase or color change in the chest tube output. If that goes well, they'll try the breast milk. This morning when I got there, Dr. Rouse had already been there (the nurses explained that the surgeons frequently do rounds around 5:30 AM, and then circulate throughout the day, between surgeries) and was very pleased with how well Gabe had done over night. He upped the 8:00 feeding to 10 ml, and repeated that if all went well, then tomorrow they would start the breast milk.

Dr. Rouse also said if the feeds went well, they would start weaning Gabriel from his morphine drip. The reason they want to make sure the oral feeds go well is they would like to use an oral medicine to help Gabe through the weaning process. The vent settings continue to be "tweaked", as the Neos put it! His rate is down to 24 bpm, his PIP is down to 26 and his pressure support is down too, but now that I want to type it in, I can't remember the number - but it is down too ;)

It has been kind of an exciting 24 hours, and the next 24 may help determine how quickly things may go from here...

It looks like they only got 9 ml out of both chest tubes COMBINED again today. That is two days in a row, so maybe we will start tube feeds soon...? I hope so! He had another good blood gas, but Neonatology hasn't rounded yet, so I don't know if he will wean. The respiratory therapist assumed he would at least wean on the rate. Gabriel is down to a rate of 28 right now. Last night I asked the therapist what different things they would wean him on and I understood some of it, but not all of it. She said after the rate gets down to 20 or less (essentially no support) they would start on the patient pressure support, which I think means the amount of assistance the ventilator give Gabriel with every breath he takes. They will also wean on the PIP, which stands for Peak Inspiratory Pressure, but I don't completely understand that one. I know intuitively what it should mean, but don't completely get it, got it? Me either. I think once they wean all of that, and if his O2 support stays low and he tolerates that, then we get to talk extubation!! When? Don't ask, I don't. OK, that is all I have for right now! I really hope I have more to report later today, or at least tomorrow.

Not much has changed from yesterday, just waiting for the chest tubes to stop draining. They only got about 9 ml TOTAL for Monday, they got about 50 out for Sunday - so we are definitely headed in the right direction. We pray it continues!! Dr. Rouse said the stitches would come out July 1st or 2nd, about a month post-op. The neonatology team weaned just a bit more on the vent - they "tweaked" the rate from 36 bpm to 32 bpm. Not as big of a change as they have done after other surgeries, but this time we are weaning with a goal of coming OFF the ventilator and I think his blood CO2 levels have been a little on the high side (but still normal), so they are taking it slow. I'm not expecting any other big medical news today, but I'll let you know if I get any!

Josh and the boys left for Evansville this morning, so I am sort of flying solo, but not really. I've gotten to know the nurses so well that we sit and chat about all sorts of topics, medical and nonmedical. I've also got friends and family up here, visitors, and everybody else is here in spirit!!

Quickie update

Dr. Rouse confirmed that the fluid in the left lung was minimal, and nothing worrisome. They are continuing to treat the atelectasis (see prev post for definition) and he seems to be responding, since today's xray showed continued improvement. He put out a little more yesterday from the right chest tube, so they want to delay the tube feeds. So far today, Shannon (his nurse) says she has gotten out almost nothing, so hopefully soon!

One other note: Saturday night we got a call from the front office at the RMH that we had mail. We read the note to discover a police officer from IMPD (Indianapolis Metro Police Dept) named Julie (she has blogged some comments for us) and her husband, retired from IPD, had left the card with a Papa John's gift card. We have been so touched and almost overwhelmed with the cards and gift cards we have received - this was the first from someone we had never even met before. No contact information was left so this last statement is to Julie and her husband: Thank you so much, it really meant a lot to us!

Corrections

I asked the nurses about spelling.

The procedure for roughing up the lungs is spelled pleurodesis (I had an "a" instead of an "o").
I also misspelled "atelectasis": which is defined as "Atelectasis is the collapse of part or all of a lung. It is caused by a blockage of the air passages (bronchus or bronchioles) or by pressure on the lung."

Here's what else I found when I googled it:
"Risk factors for atelectasis include anesthesia, prolonged bed rest with few changes in position, shallow breathing, and underlying lung diseases.
The goal of treatment is to remove pulmonary (lung) secretions and re-expand the affected lung tissue.
The following are treatments for atelectasis:
Use aerosolized respiratory treatments to open the airway.
Position the body on the unaffected side to allow the lung to re-expand.
Remove any obstruction by bronchoscopy or another procedure.
Perform deep breathing exercises (incentive spirometry).
Clap (percussion) on the chest to loosen mucus.
Tilt the body (postural drainage) so that the head is lower than the chest to drain mucus. "

Sorry no post on Sunday...

Sorry there was no post yesterday! We had visitors and we were waiting to hear from the doctors, which didn't happen until around 9:00 last night. So let's review from Saturday night: I was at the bedside around 9:00 Saturday night when Dr Rouse came around and took me back to review the past three days xrays. The left xray from that day was cloudy. He was hoping it was adelectesis**( see note below) rather than another build-up of fluid in the left lung. They can treat the adelectesis with vibration of the lung, albuterol, and adjusting the vent settings. If it is fluid, then possibly yet another chest tube, if it would appear that the others were either plugged or not in the right place. He got an ultrasound Sunday morning, after which the radiologist told the nurse it looked like there was a "small amount" of fluid in the left lung. We needed to hear from the surgeons to know what this meant for Gabriel, ofcourse after things going relatively well, we were preparing ourselves for the worst. I let my mind race too far ahead and felt so disappointed that we were possibly heading for a big setback, ie another chest tube, postponed feedings, postponed vent weaning, postponed HOME... you get the idea. We shook it off and waited to hear from surgery. The surgeons had a VERY busy day, so we didn't hear until later and Dr. Ingam (hope I spelled his name right) didn't feel like it was anything to be too concerned about - the radiologist actually reported it as minimal fluid and the xray apparently looked better Sunday. So basically I worried for nothing, but hey, I've been doing pretty well - I was due for a good worrying fit (I KNOW Dad, "Don't worry about things you can't control).

We haven't heard anything yet this morning, so hopefully the day brings good news. He had his eyes open this morning, which is always nice. Occupational Therapy came in and worked with his range of motion for arms and legs and he did really well. She said we could work with him on our own too. Josh just came in and said Neonatology is getting ready to "round", so I am going to sign off. We'll update more later as we find out what is going on - ps, we get to hold him again :)

** (not sure about the spelling, tried to google it and this was the closest I found - anyway, it is when the alveoli are collapsing, which can happen after surgery when there is a lot of inactivity. I had to breathe into some contraption to prevent adelectesis after all of my c-sections. I was not a very good patient, as I did it maybe three or four times total).

Sorry for the delay in updating - we got to hold him again today!! Because of all of his tubes, it is a bit of a commitment to hold him (it is a bit of an ordeal for the nurses to organize all of his tubes and get him moved out of his bed. Ofcourse it is completely worth it. I held him for about an hour and forty-five minutes, and Josh held him for close to two hours. He's still pretty uncomfortable today, but better than yesterday. Chest-tube output yesterday was about 40 TOTAL (that is from both tubes combined!!) so we are continuing to make progress there. Dr. Rouse was discussing maybe Monday to start the tube feeds. Neonatology is still being conservative on the weaning, but said they expected to get more aggressive in a day or two, depending on how he is doing.

We enjoyed some more visitors yesterday and today. Thanks to everyone who came by, it really is nice to break up the routine. We also got an especially nice break yesterday evening. Another family with a baby in our module invited us to their home for a cookout. Their little boy (featured in a pic below, watching Cars with Justin and Kendrick) has become friends with Justin and Kendrick. All three had a ball playing outside and eating at the little picnic table together. It was a nice taste of "normal" for an evening, and we really appreciated it. That has been another amazing part of this experience - getting to know the other families and hearing their stories. Each story is so different, yet with many overlapping commonalities.

Not much change over night. For Friday's 24 hour period, the right chest tube put out about 34 ml (before surgery it was up around 80 or more) and the left chest tube put out about 17ml (150 ml before surgery). We are making definite progress. Dr. Rouse repeated again that maybe in a couple of days, we could start the tube feedings. He said we could hold him yesterday, but every time the nurse even moved him around for routine stuff he got upset, so we opted to give him a couple of days. If this last pleuradesis works as well as it looks like it is going to, then we should get to hold him every day for the rest of his life (well, until it is "not cool" to get hugs from Mom and Dad - even then, he'll just have to get over it!). We can wait a couple of days for him to be more comfortable. I don't want him to have extra morphine just so he can tolerate being held.

Still going slow on ventilator weaning, to allow him to fully recover from Wednesday's surgery. Other than that, not much else new to report! The boys are coming back up today - they have had a great time at Lincoln this week. We'll enjoy the weekend together, and then Josh is planning to take them back on Monday or Tuesday and go back to work. Gabriel is doing better and better all of the time, and Josh wants to save some of his comp time. They'll come back up on his days off. I miss home and will miss Josh and the boys, but I can't leave Gabriel - especially with such a long drive. I know they are all in good hands, so it makes it much easier to stay here and not worry about them. Hopefully we won't be too many more weeks away from going home ourselves.

Slightly Restless night

We came in this morning and noticed his vent settings were a little higher than we left him last night. His nurse (Shannon again today) said that his CO2 levels were rising over night, so they increased the settings some to help him rest. His CO2 got up into the mid-60s (they prefer below 60) but his last level this morning was around 40, so it is improving. He also had some extra morphine over night and this morning, since he was pretty restless. I am sure I would be pretty restless too, after all he has been through. None of this is really considered to be any kind of setback, just normal post-op stuff! Occupational Therapy came by again today, but Shannon shooed them off. I don't think he would appreciate having his arms and legs moved all about right now. She told them to try again on Monday.



I did forget to mention a couple of things from yesterday (blame the lack of sleep, blame the hair color, whatever you want). When we talked to Dr. Rouse after surgery, he mentioned they were able to see the diaphragm with the scope (did I even mention that the pleuradesis is done laproscopic? Probably not) and there was "healing tissue" starting to grow around the patch already. Another random thought I forgot to mention - this week is Dr. Little's last week, so I took the picture we took of him with Gabriel and mounted on some scrapbook paper with the title "Thank You" over it. On the back I wrote him a note, trying miserably to express how much we have appreciated all he has done. Anyway, when we gave it to him (the nurses paged him, even though I told them NOT to) he told us that Gabriel was pretty amazing and would probably save other lives, besides his own. They doubted him in the beginning and doubted if treatment would be worth while, but chose to anyway. He said in the future everyone would be less likely to doubt and more willing to believe in the possibilities. I don't think I got his exact words right, but that is the gist of it. As I mentioned before, we have never questioned why this has happened, and statements like that are even more reassuring that it has not been for nothing. I hope and pray nobody else has to watch their child go through this, but obviously that is unrealistic and others will - maybe more people can experience the same success we have. In the note I wrote to Dr. Little, I mentioned that this has been both the worst and best experience of our lives - and he helped bring us through the worst to the best (and even better days are yet to come).

Surgery Complete!

His fourth (and hopefully final, at least while we are here) surgery is complete and went well. He now has four chest tubes, an IV in his foot, an IV in his left hand, at Artery line in his right arm, a central line, a tube for the vent and a tube for his stomach, so that is 10 tubes coming out of his body! And he might get his catheter back in later this evening too. Dr. Rouse was pleased with how surgery went and mentioned that when there is less than 10-15 ml of fluid coming out of each side, they will start feeding him the breast milk through a tube. If that goes well, meaning no increases or color changes in the fluid coming out of the chest tubes,then we can start talking about removal of the chest tubes. Yeah! We were just back in the module with him and he looks fine. Sleeping away! They said his post-op blood gas was excellent. Hopefully he has a good night and the drainage will taper as quickly as the left did after the pleuradesis on Friday.

Waiting!

They finally took him down for surgery about an hour ago (about an hour late, but hey, it happens) so we are in the waiting room, uh, waiting! I noticed some comments and emails commenting on his scar, which is partially visible in some of the more recent pictures posted. Honestly, I didn't even think about posting pictures of his scar, so I scrolled down to see what was there. Those pictures don't do it justice, so Josh got a picture looking down on the full scar. Hey, he earned it, might as well show it off - see below! I also got a picture of Dr. Duffy (I think he is a fellow, which I think is a step above resident, right?) working with Dr. Rouse on the last few surgeries. He put in the right chest tube.

Gabriel tolerated the left pleuradesis well, so hopefully this one will go just as smoothly, or roughly (they are "roughing up" the lung, get it? ok, not funny)

Sounds like surgery today

We talked to his nurse, Shannon (pic below), and Gabriel is on the schedule for 3:00 this afternoon. She hasn't seen the surgeons yet this morning, so we aren't sure if that is definite, but his output from the right chest tube didn't really decrease anymore. Our thoughts are that if he needs it, let's get it over with. Obviously we would have been thrilled if the drainage had just miraculously quit over night and it really wasn't necessary to rough up his other lung, but this is the only thing really keeping us from moving forward. We already know he can wean quite nicely from the ventilator, so even if he goes back up after surgery on his settings (and we KNOW he will) he'll get back down. He has been using a pacifier, even with an ET tube, so we know he can suck - so hopefully he'll get the hang of feeding quickly. AND he hasn't needed much extra pain medicine in the past three days, so we know he can wean from the morphine. BUT, none of this can happen until the lungs quit draining and the threat of a trip to the OR is over. So let's get it over with and get on with it - says I!

We'll let you know what happens!

Sorry for the delay in blogging today - but Gabriel had his eyes open for a couple of hours this morning and I couldn't walk away! In the early days when he had his eyes open, you could tell he was still pretty out of it and unfocused. Now he really looks around and at us, so you can't leave him! It is a pretty nice "problem" to have. I think I finally had breakfast around 11:30! I was also back with him for a while b/c I got lucky enough to be there for the surgeons' visits and the Neonatology rounds. As fortune would have it, the right chest tube slowed pretty dramatically last night. I think they only measured about 58 ml yesterday (He put out 130 ml the day before). He is still tentatively on the surgery schedule for right pleuradesis tomorrow, but if the right chest tube continues along this trend, they might cancel. Other good news: the rate on the vent setting is down to 22 bpm, and Gabe consistently breathes at about 60-70 bpm, so he is doing most of his own breathing. His Oxygen level has been pretty low too, around 30%. He is so close to being weaned, but they can't really extubate (sp?) until he is done with surgery and the chest tubes are at least close to being removed. I didn't think they would take him off the vent until the chest tubes were out, but his nurse today said it depends on the doctor.

I also got to do more with him today. Laura (his nurse) changed his bedding and I got to hold him up (heavy!) while she changed it out. I also got to change him again. After all that, he finally went to sleep, so I slipped out to eat, make some calls, update the blog and pump!

More mixed news

Gabe had another great night. All blood gas results remain good and they weaned his rate on the ventilator a little more. His potassium was a little low again, but that happens with lasix. The left chest tube is still barely putting out any fluid, which the doctors are now starting to say is a good sign that the pleuradesis worked (they said pretty much no matter what happened over the weekend, either increased or decreased output, they wouldn't feel comfortable making any predictions about whether or not it worked for three to seven days). Unfortunately the right chest tube has not slowed down any, so they are tentatively discussing a right pleuradesis in the OR for Wednesday. I hate to see him go down to the OR yet again, but Dr. Little said this morning that if the left side worked, it is an encouraging sign that the procedure on the right side should also work. So in that light, if he needs it, then better sooner rather than later.

I was sitting at the bedside this morning talking to Marcia (scroll down for her picture) and she continued to confirm, as others have, just how serious that first week was. She was monitoring his blood gas levels during surgery and had a front row seat. She said she saw his little heart beating in his chest when he was open. We were talking about the Morgagni's hernias (almost like a bilateral hernia, as mentioned previously) and how rare they are. I asked her if she had seen any before. She hesitated, and then answered that she had not seen many here, and Gabriel was the first she had seen survive (at this hospital, anyway). I told her we could feel the seriousness and tension in the room the morning of his surgery as everyone was busy getting ready and she simply nodded and then told me it was an emotional day for everyone involved. She has seen Dr. Rouse and Dr. Little work together many times and it was as serious and meticulous as she had ever seen them. Everyone in the room that day was amazed at how well it went, particularly that there was virtually no blood lost. Apparently Dr. Little was taking pictures with his digital camera during surgery, b/c what they were witnessing was so rare. He mentioned during surgery that he had seen one other Morgagni's hernia at the hospital he had been at previously and that child was now 3 years old. More proof that we are so fortunate to be where we are and what good hands we have serving little Gabriel (actually, he's still a bit water logged and VERY heavy to help move!).

Happy Father's Day

And we did have a nice one. I didn't make it out of the hospital to shop, so Josh got a Riley t-shirt (actually thinking about getting one myself) some nut goodies, and some cherry sours - yes, they are his favorites! I also had the boys draw him some pictures, while he was over at the hospital having an evening visit with Gabe. I told him he could choose where to go eat for lunch and he chose Chuck-E-Cheese! Ok, he's a better paren than I am. I wouldn't choose that particular restaurant on Mother's day (Hmmm... makes you wonder who the biggest kid is!)
Although I did take the boys to see The Wiggles Live last year on Mother's Day, without Josh. Surely that is one of the requirements for sainthood - or it should be. While I was watching the boys having a great time playing air hockey (all three of them) I couldn't help but think how much fun Father's Day will be next year, with Gabe probably attempting or perfecting his first steps. I love watching those first wobbly staggers, which usually end in crashes!

Gabriel made a nice card for Daddy too, it was sitting on a shelf by his bed when we got in there today. I'm sure the nurses helped him, at least a little bit. Speaking of Gabe (he is the point of this blog, after all) he had another steady night. They haven't really weaned him too much more from the ventilator, maybe b/c of the slight right pneumothorax, they didn't really say. Another chest x-ray was done this afternoon with Gabe on his side so they could see the right lung better. Our understanding is that they still aren't too concerned about it, just keeping an eye on it. The left chest tubes are still putting out very little (let's hope the pleuradesis worked!) and the right is staying about the same. I'd imagine that if that does not change soon, we'll be back in the OR for lung scraping on the right. I suppose if it works, it'll be worth it.

Gabe had his eyes open quite a bit yesterday and we got some good pictures of him with the boys. Deb, one of our regular day nurses, got a picture of all five of us with Gabe's eyes open. I also got a picture of Tabatha, who is a regular night nurse. They are all posted below, along with Father's Day pics. If I haven't mentioned it lately, thanks again for all of the posts, cards, emails, and calls. We continue to appreciate the support. Every time we talk to our family, they let us know about somebody else who reads the blogs daily, and that is very touching to us - to know that so many care about Gabriel and us. So, thanks!

Surgery went well

It will be a few days to a week before we know if it was truly successful, but Gabriel came through it fine and tolerated it well, according to his doctors. The drainage from the left chest tube was less over night, but we were cautioned that it is still too early to know if it worked. His blood gas results remain good and they resumed weaning a little bit over night. Last night I sat with him for a while and he got the hiccups. Normally he would be in obvious pain, but he seemed to be only mildly annoyed last night. When Josh went back up, apparently there was some "bubbling" around the chest tubes, but Dr. Duffy was able to fix it. When I talked to the nurse early this morning, there had been no more problems. Gabriel had a little extra pain medicine over night, but not nearly as much as the nurses thought he might need, especially after having his lungs scraped. I guess he is developing a higher pain tolerance ;)

This morning I asked Dr. Rouse about the right chest tube and if he thought Gabe might have to have the pleuradesis on the right too, and the answer is yes, it is still possible. We kind of figured as much. It has never put out as much fluid as the left and hasn't worsened, but hasn't really improved in the past few days either. He has a little bit of collapsing in the upper right lung, which we knew about and they have been watching (not sure if we have mentioned that one before). He also mentioned that if the left does clear up as they hope it will, it is possible the fluid will "move over" to the right and it could get worse. Guess what I am going to say next...........that's right! " we'll just have to wait and see"!

Surgery still on!

So far everything looks good for surgery today!! Not that we are excited about having Gabe's left lung scraped (ouch!) but it is another necessary step in this process and we are ready to move on. We pray that it is successful and we can truly start moving on to those next big steps, like eating and breathing without machines!! How exciting that will be.

On another note, we didn't realize that we had to ask if we had mail. Last night one of the managers at the RMH saw us coming in and waved us down. She handed us a stack of mail, some of which had been there for about 10 days - so sorry we haven't acknowledged those of you who sent us cards and gifts. I'm on it today! It was such a fun surprise to have so many to open and read at once - especially since we got our mail from home last night too with even more cards and well-wishes!

The boys are up here today, so we will likely be taking a ride on the "people mover" soon. We've already ridden on the glass elevators. We'll post more later after surgery.

Surgery postponed

Can't say that I am all that surprised - par for the course around here! So more hurry up and wait. Today a new baby came in across from Gabriel. The parents rushed in shortly after and were talking to the nurse about when they could feed her and do other things. The nurse was patiently trying to explain the assessment process and that they couldn't feed her until they were sure it could be done safely etc...The parents were having a hard time understanding it and especially not being able to get a time table. I felt for them - it won't take long for them to learn that time doesn't mean much around here. Ultimately it is all up to the babies and what they can and can't do, as time passes...

After the nurse left, I gave her some tips about where the good pump rooms were and how good the wraps are at the patio! Not much else I can do.

Surgery in question

Welllll....apparently some of his numbers were off this morning (potassium, sodium and creatinine) so they are adjusting the electrolytes in his IVs and he is getting a blood transfusion, which will take a couple of hours. They are hopeful that the labs after all of that will still allow surgery today, but if the results are still out-of-whack, it may be postponed until tomorrow or Monday.

And the ride continues....

Another bittersweet day

Today was extra special - we got to hold Gabriel for the first time. Unfortunately it may be a few days before we can do it again. Dr. Rouse wants to do surgery for the chylothorax tomorrow afternoon. He called the procedure a pleuradesis (sp?). Gabriel's left chest tube is still putting out lots of lymphocytes. Since he is losing white blood cells and proteins, if he were to develop an infection, he would have a hard time fighting it off. Right now he is doing well, so better to address it now, especially since it is not improving enough on its own. Apparently they are going to "rough up" the outside of the lungs in the hopes of creating scar tissue allowing the lung to more or less stick to the chest wall and hopefully seal up the leak. That is how we understand it. We asked about the risks - the response was that the risks of putting it off far outweighed the risks of proceeding.

Today, Laura (our nurse) told us we could probably hold Gabriel in a few days. Last night the couple across from us got to hold their baby and it made me happy for them, but sad for us. It sometimes gets difficult to watch other babies making those next big steps. Anyway, I told Laura how excited I was to be able to hold him soon, and admitted I'd had "baby envy" the night before. Next thing we knew, she had called Dr. Little and we were able to hold him. I sat in a rocker with him for two hours (my butt was numb, but didn't care!) and Josh held him after that. We found out about the surgery while we were holding him, and were so grateful we got that chance. We put up new pictures to show how much it meant to us. He also got a new "blankie" and got a pacifier today. He really liked it!

A few more pictures

Posted some more pics! Hope you enjoy...

Ups and Downs...

We were prepared for Gabriel to get sicker after closing, as we were warned. Well, he is doing his own thing again. All of his blood gas results have been better after surgery (closing the abdomen) than they were before. He is already weaning on the ventilator again! They are flipping him again, and he does like sleeping on his belly. Both last night and this morning, I got to help flip him, so I am enjoying a little more hands on activity. Josh got to hold Gabriel up last night while they changed out the bedding under him too. Gabriel wasn't peeing again, so they needed to reinsert his foley catheter. Josh declined to help with that one. I don't think Gabe wanted it b/c when she lifted the diaper to start insertion, he peed everywhere. Unfortunately it wasn't quite enough (he still got the foley, and then his bedding changed).

The down side is the amount of drainage still coming from the left chest tube. We are in "wait and see" mode again, to see of the chylothorax resolves on its own, or if he has to go back into the OR. This morning I was talking to a Mom who has been here about two months with her son, who is getting discharged today. I didn't reliaze Hayden was here for congenital chylothorax. She was talking to me some about what they had been through and the different procedures he had done. Hopefully we are not looking at another two months - but at least this is something they do recover from.

Chlyothorax

I found a quick/short description that sounds really close to what Dr. Rouse explained to us. I googled "chylothorax, neonatology" and found several sites, but this one provided a nice quick summary. In the two types described below, obviously our case is the traumatic one.

H. L. M. van Straaten1 , L. J. Gerards1 and T. G. Krediet1
(1)
Department of Neonatology, University Childrens Hospital, Het Wilhelmina Kinderziekenhuis, NL-Utrecht, The Netherlands
(2)
Department of Neonatology, Academisch Medisch Centrum, Meibergdreef 9, NL-1105 AZ Amsterdam zuidoost, The Netherlands
Received: 30 April 1991 Accepted: 2 June 1991

Abstract Chylothorax is defined as an effusion of lymph in the pleural cavity. In the nconate both congenital and traumatic (iatrogenic) forms exist. Birth asphyxia and respiratory insufficiency are major symptoms of congenital chylothorax, requiring resuscitation and artificial ventilation. Antenatal diagnosis by ultrasound allows carly therapeutic intervention such as ventilatory support and drainage of chylous fluid immediately after birth. Traumatic chylothorax is mainly seen after intrathoracic surgery. Treatment primarily consists of continuous or intermittent drainage of chyle with replacement of fluid-, electrolyte-, and protein losses and parenteral nutrition. Introduction of oral feeding is considered only after a substantial period without chyle production in the pleural cavity and consists of a medium-chain triglyceride containing formula. In a minority of cases surgical intervention is necessary.
Key words Chylothorax - Newborn

Just out of surgery!

He is out of surgery and doing well. We will be able to go in and see him in a few minutes. Gabriel did really well - they were actually able to close all of the skin and most of the muscle (they originally didn't think they would be able to close muscle). His blood gas was great and they barely came up on the ventilator at all - which isn't what they expected, they expected to need to come up quite a bit. We'll have to see if that changes. They also changed his central line and changed the left chest tube, which had been in a week. So all THAT is good, but he is still putting out too much fluid from the chest tubes. They had it analyzed over the weekend and he is leaking lymphocytes (white blood cells). Dr. Rouse said it was from a chylothorax (I need to google that) which sometimes happens after repair of the CDHs. It is a serious finding that they will watch closely and could really slow down his recovery. He can't tube feed or come off of the ventilator until that is under control. Always something eh? They are going to try a medicine that may help this heal itself, but if it doesn't improve in a few days, they will have to take him back to the OR to try and see if they can repair it that way. OK, we are going to go see him, we'll write more later (and my Mom is on the phone!)

Closing is a GO!

Confirmed it again this morning! We are scheduled to go to the OR between 12 and 2 for closing! It is a big step, and a necessary one for anything else to happen. We have been warned again that the roller coaster ride is not over and he will get potentially a lot sicker over the next few days. We have to ride it out to move on.

Occupational Therapy came in again today to evaluate him. What she was able to do he did well on. I don't completely understand what she did, but she checked his feet for grip and reflexes. She checked his hand grip and stretched out his arms and legs. Everything checked out, but she did mention some stiffness of the elbows and knees, which was pretty much expected. He got pretty aggravated with her, so she stopped. She hopes once he settles down after surgery, that they (OT/PT) can work with him a couple of times per week on movement and fine motor/oral motor skills.

We'll post more after surgery to let you know how it went. (I can hear the "click-click-click" of the ascending coaster and feel the building anticipation of the next drop...)

Sunday Update

Not much change - not much seems to change on the weekends!! The puffiness seems to be better today, so hopefully (lots of prayers and crossed fingers!!!) we will get to close the tummy tomorrow. He was not peeing well, so they have given him more lasix. Last night I walked into the module right when they were changing his dressing. I wasn't sure if I wanted to stay and watch, but decided to. It actually wasn't bad. I was afraid I would see organs hanging out (which is fine to watch on TV, and when the patient isn't your own child) but I didn't. I could see the opening, but it was just the patch. The surgeon changing the dressing said it looked good, but it is still up to Dr. Rouse to decide if he is ready for closing tomorrow. Once they were finished, I got to help change his bedding. That is the most I have gotten to do with him, aside from taking his temperature a few times. It was a nice treat for me. Sometimes it gets hard to watch from the sidelines (ok, more than sometimes), but as I have said before, we are so grateful he is with us and doing so well now!

He has had his eyes open quite a bit this morning. It's the first time Justin and Kendrick have been able to see that! They loved seeing him awake.

Maintaining

Gabriel had another good/steady night. He still looks puffy this morning, but the nurse said his weight came down little bit, so hopefully he's starting to lose the fluid. Keep your fingers crossed for Monday!! They dropped his support from the ventilator a little more and he continues to do well. He does have a right chest tube, along with the left one now. Other than that, not much new today.

We are taking the boys to the zoo for a little while, since Gabriel is doing well.

PS - Read Amanda's comments - hope you didn't bruise more than your pride falling out of the ambulance. And yes, you did make us smile!! :)

More pictures

Posted a couple more pictures. One is of Dr. Little. He was with Dr. Rouse the night Gabriel was born when they came to my room and took me to his bedside - when we didn't think he would make it through the night. He has also been involved in all of his surgeries, and placed the left chest tube. It seems like we see him here at all hours of the day and night.

The other picture is of the cross that Grandma Maggie, Aunt Kaci and Aunt Brooke found in the gift shop. On one side it says "Believe in Miracles" and the other says "Believe in God". It is perfect.

Not closing today

Well, he is still too swollen to close today. We thought he looked pretty puffy this morning, so I can't say that I am surprised, just disappointed. That would be another big step, with lots of other big steps that could follow it. Until they close the skin over the liver, he can't come off the ventilator or tube feed and we can't hold him. They also think the fluid in the right lung is starting to increase, so he'll likely get a right chest tube - which we have been warned about since Monday.

*SIGH*

We've still come a long way from where we started, so we'll just have to focus on that!

Still waiting to hear...

Dr. Rouse wanted to check Gabe's swelling this morning to see if it had improved before making a final decision about closing. We are tentatively on the schedule for noon. He had another steady night. The vent settings were adjusted again overnight. They increased his oxygen a little bit, but dropped the rate of the vent quite a bit. The ventilator is breathing for him at a rate of 30 bpm and he is breathing at about 75 bpm - so that is a lot of breathing on his own!! Another good sign. Mom asked me about the "peep", which I guess is like c-pap? That setting is 7. I think that's good, right? We were warned that the vent settings would likely all go up after closing, to let him rest over the weekend.

We'll let everybody know about closing when we find out.

Maybe closing tomorrow!

Every day the surgeons have been making the patch over the liver smaller. They think maybe tomorrow afternoon they can close the skin over the liver!! Now that he is less fragile, he can go to the OR for this. Dr. Rouse also mentioned that Gabriel may start getting tube feedings soon, which is another big step. I didn't ask what "soon" meant. I learned a while ago the answer doesn't matter b/c it can always change! He weaned a little more on his oxygen settings on the ventilator and his blood gas results have stayed good.

Surprisingly - not much else to report! We have had some nice breaks this week. Last night we were treated to a very tastey steak dinner, prepared by Kaci and her fiance 'Big Justin'. Today we are looking forward to a visit from long-time family friends (of the Smith side) Jim and Mary Helen Clayton.

Slow, but Steady...

Gabriel had another restful night. He got the hiccups (sp?) a lot yesterday, so he needed a lot of extra pain medicine (big ouch with the liver on the outside). The good news about the hiccups is that you have to have a functioning diaphragm and frenetic nerve (sp?) in order to have them, which has obviously been a big concern. He continues to wean down from the ventilator, they dropped the inspiratory pressure a little this morning (Amanda, I guess you would understand that better than we would). At rounds, the neonatologist told us that Gabriel continues to amaze everyone with his strength and will to live, especially considering where he started. Last night we sat and talked for a while with Kathryn, one of our favorite night nurses, and she confirmed what we pretty much new in the beginning - every time she went home from a shift, she feared he would not be there when she returned. We need to get her picture. She usually lectures me about going back to bed when I call at 3AM for an update (but she always gives me the update!).

They got more of the liver in yesterday afternoon and said they would do some more later today. His left chest tube continues to drain, so they are going to change the tube. Still not planning on a right tube, unless his blood gas results deteriorate again. He got the foley catheter out of his penis (that's GOT to feel better) and he filled his diaper three times yesterday (the nurses won't let us change the diaper yet, b/c of the chest tube - darn!!) and they took the IV out of his belly button. So, he has a few less tubes coming out of him today! Progress is slow but steady and we are thrilled with that. Occupational Therapy stopped by today, but won't begin working with him until next week, when he will hopefully be on less support. They explained that a PT/OT evaluation was standard after being on ECMO. Thanks again for the comments, and to the visitors we have had - it helps to break up the day for us!

A little better

The chest tube really helped. He had a good night with improved gas saturations. They weaned him a little more from the vent (well, back to where he was before yesterday's little setbacks). Dr. Little told us last night that his xray improved dramatically right after the tube was placed - they immediately drained about 2 oz of fluid off of the left lung, with about 130 ml total this morning. He needed that! Dr. Little warned us that there was a small amount of fluid in the right lung, so Gabriel might need a chest tube on the right if that doesn't improve. Today's xray was significantly improved on the left, as expected, with the fluid about the same on the right. No talk of a chest tube right away, but it hasn't been ruled out. Dr. Rouse was in and is going to start slowly reducing the patch over the liver and pulling the skin together today. The term "baby steps" is taking on a whole new meaning for us!! We are just thrilled to be taking these small steps. We have a few more pictures to post and will do that shortly.

I got to talk to my OB's office in Evansville today and updated them - Dr. Riley and Dr. Turnquest-Wells. I haven't mentioned them much and need to. They got the ball rolling on all of this and we can't thank them enough for their excellent care and support along the way.

Still riding the roller coaster...

Well....the gas saturations were not so great today (CO2s were creeping up and O2 levels were creeping down) so they did a chest x-ray. It showed some fluid in the left lung. He had a few albuterol breathing treatments, but evidently the progress was not good enough. He is getting a chest tube placed as I type this. The surgeon (Dr. Little) didn't seem too worried and indicated that he thought this would give him a better night. He still feels optimistic about his prognosis, and even suggested to us that this sometimes happens after ECMO. He is still retaining a lot of fluid all over. On a lighter note, Dr. Rouse checked the liver earlier and said it was continuing to improve. Sounds like they will ultimately (but not just yet) gradually close the patch over the abdomen, as the liver allows. He mentioned that they will probably not be able to completely close the abdominal muscles, which will be like having an abdominal hernia, to be repaired some time down the road.

We will let you know how he did over night in the morning.

Pics of chest X-rays

The staff gave us copies of Gabriel's chest x-rays before and after his surgery to move the liver and repair the hernia. We copied them below. The dark areas are air. Notice how much more air is in the lungs after surgery than before. No wonder the poor kid couldn't breathe!

Still holding steady

He had another good night. He is down to 46% Oxygen from the vent, so slow and steady weaning, just like they said! They took his rate up a little bit over night, but he was doing more breathing on his own this morning, so it will likely drop again today. His blood gases showed the CO2 just a little on the high side with the O2 a little on the low side (but still in normal ranges) which is why they raised the rate and held on the oxygen weaning. He gets his blood gases checked at 6 and 12 (AM/PM) now, so they'll make a decision after that about the weaning process. Still haven't heard from surgery about his liver, but it is early yet. Maybe we'll have more to report later in the day.

The boys went home last night with the Wittmer Grandparents. I was sad to see them go, but they need to get back into a more "normal" routine - this has been an exhausting time for them too. They'll be back on Friday, so we'll look forward to that. My parents and brother left for North Carolina today too. Mom is hoping to get some stuff taken care of and maybe come back when Gabriel goes home (which feels so nice to say, even if we don't know when!) since he may go home on a ventilator or cpap or feeding tube. For those of you who don't know her, she was a NICU nurse/post-partum nurse/delivery room nurse, so she knows how to take care of a baby coming home with some extras. How nice to know we will have our own private nurse! Especially one who can cook ; )

Quiet Day

Gabriel had a good night last night and a good day today (Sunday). We got here in the morning and his blood gas saturations were still very good, so after rounds they (the neonatologists) approved more weaning from the ventilator, but very slowly, as the surgeons had said was appropriate. He is now down to a rate of 40 bpm and 48% oxygen. He is getting his blood gases tested every six hours now (was every hour for a while!!), so hopefully he won't need another transfusion like he did yesterday. Consistently today we noticed that he was taking breaths over the ventilator, meaning he is trying to breathe on his own. He continues to amaze us and the staff with his progress. The surgeons changed the dressing again this evening and noted that both the liver and intestines were "soft and pliable", so hopefully they will go back in the abdomen in a few days!

On another note, today was the miracle ride. Over 2000 (Josh's Aunt and Cousin stopped counting after 2000) motorcycles rode around the hospital to raise money for Riley. We took Justin and Kendrick down to watch and they had a good time. Bob and Tom, as well as Rupert (from Survivor) participated in the ride, and other riders were tossing candy and stuffed animals to the kids. There were materials available to make signs. We made one that read "Baby Gabriel Thanks You" and held it up. It was very moving to see the riders and to think of how much money must have been raised. The Grandparents took pictures (we left our camera up in the waiting room - tsk!) so we will get pictures of the ride posted when we get them. Thanks again to all - keep up the comments, we love reading them!

Not much new, for once!!

He is officially off of ECMO and doing well. He kept getting bumped b/c he was non-emergent, but at about 3:30 yesterday afternoon, they took him off. We were so amazed that he was off after just one week, especially considering we didn't think he would be able to go on ECMO to begin with.

He is on the ventilator, and probably will be for a while. I would imagine at least until they get the liver back in the abdomen. Dr. Rouse told us the liver was still "firm" yesterday when they checked, so it would likely be 4-7 days before they could put it back in. He had a good night. His O2 levels stayed normal with 50% O2 support from the ventilator. They will likely wean him some more from the ventilator over the next few days, but gradually. Our understanding of what the "50%" support means is this: The air we breathe from our surroundings is usually 21% O2, so he is getting 30% more from the vent. He is breathing at a rate of 44 per minute, as regulated by the machine.

Please continue to pray - it is obviously working!! All along, we have had a Guardian Angel (a gift from Bill and Marty Keim) in his bed. Grandma Maggie, Aunt Brooke and Aunt Kaci found a beautiful cross that said "Believe in Miracles" on one side and "Believe in God" on the other side. It is so appropriate in any situation, but especially in this one. We are trying to figure out a way to safely hang it at his bedside. We have never asked "why" throughout this whole ordeal, but I would have to say with all of the lives Gabriel has touched and all of the faith he has either strengthened or restored, we know the answer.

More pictures

We posted more pictures, post-op! We have so many heros here we can't begin to name and thank them all. We have more nurses and techs we want to get pictures of for Gabriel's book. There are so many that are responsible for him still being with us, and doing so well. We have also had great support from the social work department. Our social worker, Betty, came out many times during surgery just to let us know what was going on and the "mood" of the room, which she said was always positive. When surgery was over, we went into a little room so the surgeons and the ECMO director could let us know the specifics. After they left, we were still sitting there, feeling so happy about the way it had gone, but still afraid to show it (after the past week)! Betty recognized that immediately and had us stay behind. She told us it was ok to feel relief and it was ok to smile and be happy. I think we really needed someone to tell us that. We can't say enough about the support we have been getting here through family, doctors, nurses, other families, social workers, volunteers and ofcourse our many friends and family calling and commenting on the blog, and all of the prayers. I don't know how we would have made it through this week without all of this support. Thank you to everyone who checks the updates, prays for us and Gabe and for the comments. We look forward to those comments every day.

Coming off ECMO!

Sorry we didn't update earlier! They have been saying since early this morning they were ready for him to come off of ECMO, so we have been staying back there with him, since we have to stay out of the nursery during the procedure. His blood gasses have been terrific all night. They weaned him down to 60, which is essentially no support, just enough to keep the maching running. He stayed there for 2 hours while they monitored his gas levels, to be sure he could tolerate being off ECMO. He did great! They took him back up to 120 just to keep the circuit running well, not because he needed it. He is at 50% on the ventilator, which is typical. A couple of xrays have been done to make sure the position of the vent tubes are just right before he comes off. He is ready, just waiting on the surgeons. It is nice to know for once that Gabriel is stable enough to be considered non-emergent, therefore he can wait for the surgeons.

We will put some post-op pictures up soon!