If you are reading this, it is way too early in the morning...

...and Isaak is on his way to get his stoma closed. Finally.

His surgery is scheduled for ~7am and Bekka and Isaak are supposed to be at UNC by 6:30. Our wonderful, fantastic, incredible, (for)giving friend Cathy is baby sitting Penny, as I have a work engagement. Unbeknownst to Cathy until this afternoon, I have to be at work at 7am. Which means she has to be here by 6:30. Normally, 8am suffices, but not today.

Thank you! Your diet Cokes have chilled overnight in the fridge.

As to the actual procedure, we are ecstatic this is finally happening. As excited as we were by the incredible symbol of Isaak's improving health having his g-tube removal was - we would rather that sucker had stayed in. 2 1/2 weeks of constant gauze/maxi/tape/duoderm to no apparent effect on his stoma site has been frustrating and worrisome. A couple of quick stitches tomorrow should make this a fading memory and will be one more step towards a "normal" life for a special little boy and his worn-out parents.

Ding-Dong, the G-Tube's Gone!

Yes. Yes. You aren't seeing things - this *is* the third post in March.

Oh, you meant the headline? (Of course you did!)

This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!

This was/is very exciting.

It's also very messy.

You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...

The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...

In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.

In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.

There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)

I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.

What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.

Just in Case You Were Wondering...

...Isaak is, in fact, at home and doing well. His stay on the pediatric floor at Duke was just a formality and he was discharged after one night with no fanfare (though he did make friends with the nurses).

We really won't have an update on the situation with his eyes until Monday morning. He has a follow up appointment at Duke Eye Center with the surgeons.

Otherwise, everybody is doing pretty well. The last official weights we had on these two, Penny was just shy of 11 and 1/2 pounds (I bet she is closer to 12 and 1/2 now) and Isaak was just a tick over 10. So "Little Bit", as I had taken to calling her, really isn't anymore. She appears to be taking full advantage of that intact digestive tract she is sporting to pack on the pounds and inches. Isaak is jealous. Honestly though, if we didn't have Penny to compare him to, I think his growth would look great to us and according to the doctors, his growth really is quite good given his disadvantages.

He had a visit with the GI Docs, GI Surgeons and Speech Therapist at UNC last Wednesday and everyone was pleased with how well he's doing. Amazed really. The surgeons increased the size of his G-tube (since he was a tiny tyke that didn't even weigh 5 lbs when he had his reanastomosis) and were otherwise happy with the way everything looked.

The GI docs have been very happy with his feeding progress and he's now getting 5, 45ml (1.5oz) bottles a day. This is quite an increase from the 3x10ml he was getting when he came home. He's still getting TPN via his Broviac but there is hope we can start tapering that down soon since he's doing so well with his g-tube and oral feeds. They have decreased the amount of dextrose in his TPN and that, combined with the oral feeds, has been great for his liver. His total bilirubin is down to 5.3 compared to 11.6 not long after he came home from the hospital. Remarkably, he barely even looks jaundiced now. Ideally, the bili level would be below 1.2 mg/DL, but we'll take what we are getting now, yes sir!

The speech therapist was making sure he was doing OK with his feeds. When we first began increasing bottle feeds, he was having some trouble developing suction. Apparently, that was just due to inexperience and he is now doing a great job and they did not have any concerns.

I took my first extended trip out of town since last spring...and nothing terrible happened. Things like that really ride in the back of your mind. Grandma Karla is in town too, so that made it a little easier on everyone. I wouldn't have taken off if Bekka was by herself that entire time.

Look for an update on Isaak's eyes later this week and new photos by the end of the month. I'm going to start  uploading photos about once a month just so I'm not chasing my tail all the time trying to keep up.

This Post Just Couldn't Weight

Yes, the pun is horrible and completely intended. That's just how I roll.

In big news, Isaak was weighed today: 8lb 12oz
Penny was weighed today: 8lb 12oz

Technically, he weighed 10 grams more (3970g vs. 3960g) but Penelope has caught up with and is quite likely to soon pass her brother in weight. Isaak has been bigger than Little Bit since they were born! She was 1lb 7oz and he was 1lb 11oz (780g vs. 650g), and he has typically maintained an 8oz margin for months.

So why the sudden overtaking maneuver on Penny's part? Simple: She eats like an NFL linebacker and still has her entire digestive track, whereas Isaak is getting about 30% of his nutrition via TPN and the rest via g-tube and three small bottles a day. She can just consume, and more importantly, process more calories than her younger brother.

What is amazing is that Penny isn't chubby at all. She has a tiny double chin and a few small rolls on her legs, but is mostly solid muscle. Apparently all her food consumption is going right into getting bigger. Isaak is definitely the chubbier of the pair and looks really healthy - he just isn't growing as fast. They will both get measured at the pediatricians office on Wednesday and it will be interesting to see how much longer she is.

Please don't take this development as a negative. Overall, Isaak is doing so well! He's gaining at a nice steady clip of 0.5 to 1oz per day and has tolerated every feed increase we've tried since coming home. In fact, right now he is at 16ml/hr - the rate that caused him to start dumping while we were in the NICU. Of course, he also weighs probably 3 lbs more now than he did then and should have had a commensurate increase in digestive tract length and development.

In very good news, we have been allowed to start decreasing TPN as his g-tube feeds increase. Hopefully we'll start to see a drop in bilirubin levels as the ratio of oral/enteral feeds to TPN increases even further.  To stop TPN, he would need to be at about 25ml/hr of enteral feeds. Of course, as he grows and gains weight, that target moves out a bit, but we are optimistic we can get rid of TPN in a reasonable time frame. Truly, from what we've found in our research, he's doing remarkably well for a short-gut baby.

He has a long road ahead but is on the march like a little soldier.

Sound Medical Advice (and an update on the Twins)

First, to get this out of the way:

So now you know! And catheter safety is paramount (really).

One of the biggest risks with a central line is infection and another risk is some sort of trauma caused by tugging or moving the catheter. But just wow! I suppose these videos are geared for kids and their parents and not so much little ones, but now Bekka and I can better resist the temptation to start jumping rope once we get him home.

Now on to the babies:

Isaak is doing pretty darn well. Some of you may have been updated via other means that Isaak was moved to a regular pediatric room last Wednesday. The way it happened was...interesting. We'd been debating making the move for a few days, a new attending came on in the NICU and pretty quickly decided that Isaak really should go to the floor. He no longer has preemie problems (save for a bit of anemia) and the doc had decided that the GI folks could better handle the feed situation. We did not disagree.

Anyway, on Wednesday, Bekka decided to take a day off from the environs of the NICU as she knew Isaak would be well cared for by all the nurses. She'd been told it would be "2 or 3 days" before a room would open up on the regular pediatric floor. That was the status at 3pm on 8/11. At 6, she gets a call that says "we will be moving him in a hour". So not only do we get to hurry to the hospital, we have to pack for Bekka to spend some time there. So we did. We finally made it to the hospital to find him zonked out in the bed and sucking merrily on his paci. That was a hectic evening.

Ever since, he's been ensconced on the 6th floor of the North Carolina Children's Hospital under the watchful eyes of his mommy. Little sister has been there with them every night save one, when daddy and Nana and Papaw brought her home so mommy could sleep without having baby grunting in stereo running all night long. (Apparently it's tiring. Who knew?)

Medically he seems to be rapidly improving since Friday. He was on 10ml per hour via g-tube for a week as they monitored the level of "reducing substance" in his stool. (Poop. You KNEW there was going to be poop, right?). This test measures the body's ability to absorb sugar in the intestinal tract and is an important indicator of bowel function. For several days, he was running high values (0.5 or greater g/dL). Yesterday, he finally dropped down to 0.25. Now, this doesn't mean that he wasn't processing fats and proteins, just sugars but it's a good test looking at how things are going. Since he hit 0.25 for 2 days in a row, on Monday they upped him to 12ml/hr of 50% milk and 50% Elecare (an elemental formula). If he has a good test tomorrow, he will likely get bumped to 13. They left his TPN where it is so he could get a few more fluids.

He's gaining weight well at roughly an ounce a day, and that's a good indicator he is also getting nutrition from the g-tube feeds. If he wasn't absorbing something, the TPN doesn't have enough calories to keep him growing. Do we think he'll be off TPN before coming home? Probably not. We are at the point though where we'd like to get our little guy to the home and used to be being in a non-hospital environment. He would likely be looking at many months before getting to strictly oral feeds, but you never know. The next big step for him will be trying small bolus feeds, both via g-tube and orally. Ideally, when he comes home, we'd be able to feed him orally during the day and then have g-tube feeds overnight.

His poop is looking better, too. A little color has started showing up in it and that corresponds with a sudden change in his overall color. He's still jaundiced, but the change from Friday to Saturday was pretty stunning. Apparently, much of the color in poop is the body ridding itself of bilirubin (I did not know that) and we hope that his body has decided to get better at doing just that. The TPN is still not good for his liver, but he'll be so much better off if he can dump the bili.

In other news, Isaak's edema seems to have completely disappeared. Much like Penny, he just started peeing a couple of weeks ago and hasn't stopped. This is excellent since he has the IV in all the time. He also appears to be working through the anemia (At last! We hope.) His last hematocrit was only 0.1 lower than the previous (so effectively the same). Hopefully his next will trend higher. Also, his eye exams are starting to look gradually better. The left eye is still the most concerning, partly because there is a hemorrhage concealing the retina in a couple of places. Hopefully that clears up more this week so they can confirm that the eye is still maturing.

Penny has been her usual rambunctious self. We'd like her to be gaining weight a bit faster, so we have just upped the quantity she is getting in her bottles to almost 3 oz. She gets 3 of these a day, all fortified with formula to 24 calorie. Bekka also reports that she is getting better and better at nursing. We have to remind ourselves that these little guys have to practice and get stronger and that they were only due last week! Her only other issue is a worsening of the RoP in her right eye. It's a little unusual for that to be happening at this age and stage of development so she'll be back next week for another checkup. Hopefully nothing to worry about but it's important to stay on top of that issue.

I think Bekka and I are mostly staying sane. She's spending all her time at the hospital save for Penny's appointments and when I spirit her away to escape for a bit. It's very challenging taking care of two babies but there is something to be said for not having to drive back and forth to the hospital every day and getting to stay in the same space at night.

In a complete aside, did you know that at the state's preeminent public hospital (PUBLIC), patients have to pay $8 a day to park. WakeMed was FREE for patients and Duke was only $2 a day when we were there with Ollie. Just amazing. They have their excuses and they all suck. I can only imagine how many patients can't actually afford that. Serving the state well there Carolina...

There is a reason for cautious optimism in our posts! Also: Warning, poop ahead!

So, the day *after* the big update regarding Isaak and all his good news, he decides to have the predicted setback in his feeding progress. When we were visiting on Sunday, he had a little spit up (completely new event) and also a big poopy diaper that was much looser than they had been. (Sorry, poop is the topic of conversation of lots of baby parents, but especially ours ;)

On Monday, he had an even bigger diaper that was definitely too liquid. Lab analysis indicated that he was not processing carbohydrates well at all. This is where you have to step back, retrench and re-evaluate.

The docs immediately dropped his oral feeds down to 10ml/hr (from 16). He will resume TPN (grrr) this evening to make up for the missing calories (he was on dextrose and electrolytes overnight). We hate to see the resumption of TPN, but it's critical he get the calories to continue growing and developing in other ways right now.

The good news? He hasn't pooped since yesterday evening and this probably means the drop in volume really has helped him slow down his food transit time. Sometime in the next couple of days, they will run labs on his stool again  to make sure everything is OK and he is processing well. Also, his electrolytes and glucose still looked good. If a baby is truly "dumping", those usually get out of whack really fast. It's great that he's still able to get a fairly substantial amount of enteral feeds as that is so so important to intestinal development and growth.

Over the next few days, they will begin increasing his feeds again and we'll see how far he gets this time. I suspect things will go a little bit slower and more cautiously. We absolutely want to maximize the amount of enteral feeding he gets so we can minimize TPN, but we also have to keep him growing and developing. There is a good chance they will also begin increasing the percentage of his feeds that are based on an elemental formula (say 50/50 formula and breast milk) as those are often more readily absorbed.

That's it for now.

Isaak's big Update

I'm going to try to make this relatively short. Isaak is doing great this week. Fantastic even.

Early in the week they made another effort to get him off supplemental oxygen, and so far, 5 days later, he's been a little champ.

First off, new pictures: Here and There

Now on to the update.

Here's a bulleted list of Isaak info:

• Now weighs 7lbs 5oz.
• Off oxygen
• Still anemic but his reticulocyte count is improving. There is still a chance he will need a transfusion again and they'll be checking his blood-work again in a couple of days. Hopefully he's bottomed out on the anemia and will show signs of improvement. This makes the fact he's not using oxygen all the more remarkable.
• Off IV nutrition (TPN) for now. He's tolerating g-tube feeds really well and if he gets up a couple of more notches, there is a chance he will not need to go back on TPN.
• RoP has improved quite a bit. Ophthalmologist was optimistic after the exam on Friday. His eyes have begun maturing and the hemorrhages that were present have begun shrinking. By no means is he out of the woods, but it surely is looking better (no pun intended there).
• We might move him to a regular pediatric ward. He doesn't really have any preemie problems right now (apneas and bradys) and Bekka could room-in with him and bring Penny along. Of course, there is a big safety net in the NICU if something suddenly occurs, so it's not an easy decision.
• Moving to a regular floor was definitely the plan when we were positive he was coming home on TPN. He would need to be on GI service so we could get TPN training and get his mixture calibrated. Staying there may still help the GI folks assist us in getting him used to bolus feeding (and he might also need TPN if he has any problems over the next few days).

If he really doesn't come home with TPN (double yay!), he will hopefully be getting bolus feeds (bottles and nursing) during the day and then continuous feeds overnight. This will help make sure his system isn't overwhelmed and that he gets enough calories and nutrients. Again, a lot is still up in the air. He is doing significantly better than anyone expected at this point and some small setbacks are to be expected but he is a tough little hombre.

Not that much to report on Penny. She continues to light up her parents' days and is now up to a whopping 6lbs 4oz. Tiny, but much bigger than she was. Big enough for a regular car seat even! We don't have length measurements on either of these little tykes. We'll try to get those soon. She's a spunky little girl (hmm, wonder where that comes from?) and seems to have inherited her mom's sleeping patterns.

A Weekend with Penny and an Update on Isaak

When last we left our intrepid band of preemies, Penny had been discharged but Isaak was having complications and was getting all kinds of workups for infections. I'm happy to report that (as daddy suspected) he appears to have just been very cold. Nothing has grown in any of the cultures, including the lumbar puncture. They will continue to watch the cultures, but so far nada. Now, it's not good that he gets cold so easily and we have no idea why he is having so much trouble regulating his temperature, other than because he's a preemie. It's concerning, but all we can do is keep him well wrapped and check his temp more frequently to avoid a recurrence and hope he grows out of it as he gets bigger.

Today was exciting as he's hit 10ml per hour via g-tube feeds. He has started pooping, but no signs of "dumping" yet. What might be the difference between pooping and dumping, one might logically ask? "Dumping" in this context means that very little of the oral/g-tube intake is being processed. It's essentially shooting straight through the GI tract. What's worse, it may actually pull additional fluid out. So maybe you had an intake of 10ml per hour, but are outputting 15ml per hour. That is not a good scenario and is one of the more common issues with short-gut patients. The challenge is finding that upper limit.

10ml was the main target so that he would be getting the majority of his nutrition and fluids enterally rather than via TPN. Right now, due to reduced fluid intake, he's getting over 70% of his feeds as breast milk. That is good for Isaak and very very good for his liver. His bilirubin counts have gradually begun to drop as he's getting less TPN. As he gains weight, the TPN percentage will go up a bit as his digestive system might not be able to tolerate significant increases in volume just yet. If we can keep him over 50% oral/g-tube intake, he'll be in a good place.

Little guy is still having problems with edema (thus the reduced fluid intake) and started a second 3-day course of Lasix yesterday morning. He was looking quite good in the evening and appears to be excreting a bit more so there is hope he will begin regulating his own fluids shortly. It's not uncommon for preemies to have issues with edema, nor is it uncommon for anyone that has had abdominal/GI surgery - so Isaak is experiencing the old double whammy.

Hopefully, control of his fluid levels will also help his other remaining issue - oxygen addiction - he loves the wall juice. What's weird is how little he is actually getting. They have him on a flow rate of 0.05 lpm - an absurdly low number - but if they try to drop to 0.025 lpm, he starts desatting. It really is crazy. Part of this may be an issue with hematocrit. His numbers are dropping again and they are doing a blood count, including reticulocytes, to see if he is making a reasonable number of blood cells. If he is, the question then becomes: What is eating the mature cells? Why isn't he having a net gain? It may (hopefully is) just be something he has to mature past and only time will take care of that.

So on to Miss Penelope!

How is it having a baby in the house again? FANTASTIC (and exhausting). I don't think Bekka and I will be used to just picking her up and squeezing her (gently) anytime we want for weeks yet. After watching her grow from that tiny little newborn to her current petite, but relatively huge size, and only seeing her for a few hours a day, it's wonderful to have her there all the time. We have discovered that if we want to get any sleep at night, we have to feed her a big bottle of mom's milk fortified with extra calories from formula. Otherwise, she wants to feed about every 2 hours and that is tough on mom and dad. Nursing is hard work for babies, and while she is good at it, she just can't get as much food that way before she's tuckered out as she can with a bottle. With time, she'll get better and better at nursing.

That's all for now.

Exciting Day

Since we all know that the main reason ya'll check in so regularly is to see new pictures, I'll let you know that you can find some here and there.  =)

(Edit: And now we have one more set. These were pictures taken almost 3 weeks ago by Nurse Katy at WakeMed when Penny and Isaak moved in together. It's amazing how cute they are and also how different they look! -Neil)

Now on to the update...

Isaak is "eating" again!  His g-tube feeds began today around 11am at 2ml per hour continuously.  He's been tolerating them well thus far.  I think he's still feeling hungry though.  Every hour or so he gets pretty riled up for around 5 minutes then settles down again.  Sometimes his pacifier helps; sometimes holding him helps.  Even though he's in the NICU, he is just a baby with baby needs.

Other exciting news in Isaak's world:  poop!  While I was changing his diaper this evening, he squirmed and grunted and pooped...right in the nice, clean, fresh diaper.  But his nurse and I were so excited we just about did a jig right there.  This is great and hopefully there will be more to come.

Penny is nursing well and we are having a sleep over of sorts tonight.  They had parent sleep rooms on the floor with a pull out bed and spots to hook up monitors, Neopuff, suction, etc.  This will allow me to nurse Penny throughout the evening and night.  Eating and gaining weight are really all she needs to master in order to go home.  Assuming she does well, we'll introduce her to bottles tomorrow or the next day. 

That's your quick update for today.  Right now Penny's grunting for me.  Happiness!

The Latest and Greatest from the Land of Light Blue

Today we have a mixed bag of news to report but overall things are going well. The only real negatives are Isaak's retention of fluid and the fact the little guy hasn't gotten to eat yet. It had really seemed that today would be the day they would resume light feeds via g-tube, but it was not to be. During his evaluation this morning, the surgeon thought he was a little too distended in the abdomen, so the little guy is still NPO. He received a dose of Lasix this evening and everyone is hoping this helps him finally get rid of the extra fluid he has carried since surgery and by extension make it more likely he eats tomorrow! The worst part for mommy and me is that he decided today was the day he would get mad when he was hungry. You can tell he is feeling much better and is more energetic. He was using this new found energy to get very angry and squall away if one did not keep the paci firmly in place. It breaks your heart, it really does.

In very positive news in Isaak's world, he spent the entire day sans supplemental oxygen. He has tried this a couple of times before but it sure seems that this attempt is more serious. It would be a big milestone if he can keep it up. His sister is entering her second week without supplemental support.

Miss Penny is doing quite well. Bekka is attempting to nurse her 2-4 times a day. She is now consistently eating more than 50% of the required feed volume with each attempt and sometimes eats the full amount. What she doesn't eat they make up for via the NG tube. This is really her last milestone. Once she is feeding exclusively by nursing and/or bottle AND gaining weight, she'll be ready to try the car seat test and hopefully begin living with mommy and daddy. Doesn't seem real in some ways. This is my 1lb 7oz girl here!

Speaking of weights, they both continue to trend up. Penny has plateaued a bit, but was at 2551g last night (no weight yet this evening for either of them). That translates to 5lb 10oz, almost 4 times her birth weight. Isaak's weight is in flux. He weighed in at 2750g last night (6lb 1oz) but that number is likely way too high due to the fluid retention. We'd really like to see him drop about 100g at tonight's assessment.

I know we haven't posted much in the way of pics lately, but we have a ton and I will try to take care of that this week. That is all to report for now. Hopefully the next time one of us posts an update, Isaak will be progressing nicely with his feeds.

Penny and Isaak - Together Again (again)

No pics available, but Penny was transported to UNC this afternoon. Thanks so much to our friends at WakeMed for taking care of our little guys for so long. We wish we were able to finish our stay there, but little girl has to nurse and Isaak has to be where he is to get the GI care he needs. We had a wonderful stay and could not have asked for kinder, gentler care of both our babies and ourselves.

In big news, Isaak was successfully extubated today. He wasn't really all that happy about it and was initially on a fairly high CPAP pressure and O2 level. (Just a nasal cannula was not going to be sufficient for him given the issue he was having riding the vent). However, when the surgeon came by for a visit, he suggested they remove the vacuum tube from his esophagus and vent his stomach as needed through his g-tube.

That did two things: 1) Royally ticked him off and 2) Took a fairly large obstacle out of his throat. Since then, they have been able to gradually reduce his O2 levels. They also restarted caffeine to get him through the next few days and assist with the breathing and heart rate. We'll be watching for improvement.

Otherwise, he is doing pretty well. His abdomen is a little swollen and red, but the surgeon was not overly concerned and indicated it looked normal. After all, he's had pretty major slicing and dicing down there. Now we anxiously await the first bowel sounds so that he can begin getting limited amounts orally. He's a tough little guy.

Surgery Day is Here

Today is Isaak's big day. The little fella is scheduled for 3 surgical procedures.

1. Reanastomosis of his upper and lower intestines and repair of his ostomy
2. A Broviac Catheter (smaller version of a Hickman Line).
3. Placement of a g-tube, likely with a Mic-Key button

Yes, it's a lot for such a tiny guy to go through but there is a reason for it all.

The reanastomosis is obviously the big one. An upper and lower GI contrast dye study was conducted today and the results were encouraging. Isaak had no visible strictures. Now the big question is will everything be healthy when they open him up. They may have to do small resections at the ends of the remaining intestinal tissue to make sure they are connecting the healthiest, most viable tissue back together.

The Broviac Catheter will allow the continuation of parenteral nutrition and is typically easier to maintain, longer lasting and with fewer infections than the PICC lines they have been using so far. It is almost certain he will need to continue parenteral nutrition for weeks to months to help him continue to grow while his gut adapts and develops.

The g-tube. That's a tough one. We really struggled with that decision as waves of memories of Ollie came crashing down with each discussion. In the end, conversations with doctors at both UNC and WakeMed helped convince us it was the best course for Isaak. With a g-tube in place, they can feed him continuously and help encourage bowel development, but without the potential negative assocations that might occur with the use of an OG or NG tube for an extended period. He'll still be able to eat orally, but they can increase the quantity and spread out the feeds using the g-tube. All in all, he should get home earlier this way and have a better outcome to boot.

If we are very lucky, the g-tube combined with oral feeds might mean he can go home sans TPN, but it's not likely. He will most likely be getting a mix of enteral and parenteral nutrition for some time to come. Gradually, his gut should adapt and he'll go off the TPN. This would be good for his liver as extended use of parenteral nutrition places a strain on multiple organs.

Surgery is scheduled between 10 and 1. Really, it's like the cable guy or something. The surgeon has several smaller cases he wants to finish up in the morning before taking on Isaak's. He'll be in good hands.

We will have a single running post tomorrow to keep the world up to speed as we know something. He was sleeping very peacefully this evening so hopefully he gets a good night's rest. Something I'm about to try to do.

Penny is doing well. We are trying to get her to UNC so Bekka can nurse. The more she can do that, the faster Penny will get home. She really is so close. She needs to desat a little less and move to completely oral feeds.

Both of the little guys seem so big now. Isaak cracked 2500g tonight (5.5 lbs) and Penny is just under 2400g (5lbs 5oz). He's 17.5 inches long and she is just over 16.5. It's amazing to look at these chunky little monkeys and think about where we were 73 days ago. We were so worried about getting him to even 1800g a few weeks ago. Those guys at WakeMed did a great job of fattening him up!

Improvements and Departures

Well, let's start with the good news, shall we?

Isaak's transfusions helped him tremendously.  His skin tone became nice and pink again.  His breathing improved.  His temperature and its regulation also improved.  And his blood tests?  They grew nothing - no bacteria and no fungus.  CRP levels dropped.  So they've stopped the antibiotics, antifungal and caffeine.  He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm.  (As Neil would say, Isaak likes the "wall juice.")  He also ditched the isolette (again).

Penny remains sans respiratory support.  And it is SO much easier to get her out of the crib.  She has occasional desats but usually recovers quickly on her own.  A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.)  They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm.  And we've been working on breastfeeding.  Each time she does better than the last time.  It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today.  On the whole, though, she's doing really well. 

Isaak's surgery is Tuesday.  While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again.  Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect.  With a g-tube, Isaak could get continuous feeds overnight.  (Gee, there are a couple more phrases we'd hoped to never use again.)  The goal of doing continuous feeds is to maximize the adaptation of the bowels.

In preparation for his surgery date, Isaak will be transferred to UNC on Sunday.  And, if there is space available, Penny will, too.  We are very sad to leave our ICN family at WakeMed.  This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.   

Speaking of hard decisions and stressful situations...

It's coming.  Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th.  Neil and I have both been talking about where we were this time last year.  July 4th of last year we were at the ER with Oliver and I had just broken both elbows.  July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke.  July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short.  And August 3rd of last year...he was gone.

We love you, Ollie Bear!  And we still miss you terribly.

We need a bigger house....

Don't get me wrong. I'm grateful for all of the supplies that are arriving on my doorstep - bottles of formula, feeding bags, tubing, etc. But it all arrives in bulk; one month's worth of supplies at a time.

Our house was "cozy" before Oliver arrived. For nearly nine months, we worked at cleaning out closets. We reorganized to make more room. We bought a small storage shed. And when Oliver arrived in August, our house became a little "cramped" with teeny clothes, play mats, swings, diapers and such.

Then, in December, the equipment began arriving. At first, just a CoughAssist and a pulse oximeter. Neither had much in the way of additional supplies (or "consumables" as the insurance company likes to call them). Then we got a couple good-sized boxes of SimplyThick to add to the breast milk. Then we switched to formula with the SimplyThick added.

In February, the newest addition to our equipment family arrived: a nebulizer. And several little boxes of albuterol to go with it. A mask or two. Some tubing. A makeshift adapter with a T-connection so Ollie could have his treatments while lying down. We'd gone from a little cramped to surrendering the coffee table to the equipment family.

We got home from the hospital on Tuesday with a couple of patient belonging bags with 5mL and 3mL syringes to flush the tubing for his feeds. Several Y-site extension tubes to make it easier to administer medicines via g-tube. A couple of 60mL syringes to vent his g-tube and give feeds via gravity. A few bags to hang feeds in case we got a pump.

Then Wednesday rolls around. The home medical equipment and supply company delivers a Kangaroo Joey feeding pump with small backpack. More feed bags. A pole to hang the feeds and mount the pump.

Today, a box of 30 feed bags arrives. Along with more Y-site extensions. Plus four cases of ready to feed formula. And one can of powdered formula. The tubing that runs from Oliver's Bard button to the Y-site extension tube hasn't even arrived yet.

Disappointment

Oliver had his swallow study done at 3pm. He got about 4 bites of applesauce mixed with barium (so we could watch on the videofluoroscope). The speech therapist stopped the feeding and began to massage his cheeks and throat. And then she stopped the study all together.

SMA causes muscles to weaken over time. Muscles like those used to swallow. Oliver would try to swallow the applesauce, but a lot of "residue" would remain at the back of his throat. When he would inhale a breath, the residue would be sucked into his windpipe and hit the top of his vocal cords. Any residue that enters the windpipe is considered aspirated and, if it enters the lungs, can cause pneumonia.

The recommendation from the speech therapist was to discontinue oral feeds. She was very sympathetic and told me how much she hated having to tell me that news. We watched the recorded video together and she showed me where the food had penetrated the windpipe as well as where food had entered Oliver's nasal passages. I asked her if she thought this was due to the Nissen or the post-op or SMA. She didn't even hesitate. It's the SMA progressing.

That was the first real blow since we've been in the hospital. Everything had been progressing nicely. And our goal had always been to continue oral feeds after the g-tube surgery. Especially since Ollie loves sweet potatoes and blueberry applesauce! Instead, SMA has stripped away another layer of normalcy.

Busy Day

Whew.

I am trying to process all that has happened today and my brain and body are just so tired. I'll attempt to give you a quick run down now and a more detailed post tomorrow.

Oliver is still doing fabulously well. His incision is healing nicely and his Bard button is doing well. He is now receiving formula via g-tube. Every three hours they increase the amount by 10mL and decrease his IV by 1mL. He was seen by a speech therapist and occupational therapist today. He took 2 ounces of thickened Pedialyte and about 4 spoonfuls of peaches. Oliver was ecstatic to be eating with his mouth again! Everything looked good so we'll be doing a swallow study tomorrow afternoon. And hopefully - cross your fingers - we'll be able to go home sometime after the swallow study.

While Ollie was in the PICU, they swabbed his nose to check for the presence of MRSA. Today we found out that his swab was positive. Now don't freak out on me. It's not that big of a deal. But it does mean that all visitors including doctors and nurses have to put on a disposable gown and gloves.

I'll post more later. Right now I've got to get to bed and get some rest.

Shhhhh. Asweep...

Mama and baby are both sleeping beautifully right now. It's good (great!) for both of them. Everything is still going superbly today. Ollie is doing great without morphine - what a little trooper - and seems to be tolerating the increasing quantities through his g-tube wonderfully.

As of now, it looks like we will be here at least through Tuesday. Tomorrow, they'll be showing us how to conduct a bolus feed (we hope not to need a pump for him, it would be a lot more convenient to feed as needed). He won't be able to take oral feedings until we have another swallow study done to make sure everything is working OK after the Nissen. That may happen before we leave the hospital or we may have to come back a couple of days later. You can tell the little fella wants to drink something, but now that the feeding volume through his tube is up, he doesn't seem to be acting as hungry anymore.

Once again, thanks everyone for the vibes and prayers you've been sending our way. And thanks to my parents for helping out so much over the weekend (Spring cleaning! That's just too much guys!).

Please also keep Rebekka's parents in your prayers. Her mom was supposed to visit to help with Ollie, but Bekka's father has had a bad time of it the last few days. I know they need the good vibes as much as we do. I know it's hard being so far away sometimes.

Until later...

A Quick Post

Well, we're in our own room now. We moved to the 5100 wing around 8pm. Ollie and I have settled in for the night.

Everyone in the PICU was amazed at how quickly Ollie has been progressing. One of the respiratory therapists said that he was surprised at how little time Oliver spent on bipap and at how well he had been doing off of the bipap.

Ollie is continuing to receive g-tube feedings. Right now we've switched from formula to Pedialyte and we're gradually increasing the amount he's getting. We started out at 5mL per hour. That was upped to 7mL per hour. Four hours later it was increased to 9mL per hour and once four more hours pass it'll be bumped to 11mL. He'll continue to receive IV fluids while getting the tube feedings. As the tube feeds increase, the IV fluids will decrease.

In other news, I finally got my shower today. Yea for clean hair and a change of clothes! The only disappointment we've had is that the Ronald McDonald House Family Room for parents of pediatric patients has been closed during most of our stay. It is run by volunteers and they've had issues getting it staffed the past few days. So I didn't get access to a shower until we got our own room.

That's all for now...it's way past my bedtime! =)

Three Cheers!

We are SO pleased with Ollie's progress. He had two chest x-rays overnight and both look great. He was weaned off of the bipap around 10-ish this morning. Once bipap was off, his pacifier went in! He was such a happy fellow to have his paci back. =) He's also been getting g-tube feedings since about 9am. Right now it's being done pretty slowly - just 5mL per hour. But it's still a big step.

Oliver has kept his oxygen saturations up since getting off of the bipap. If he keeps progressing this well, he'll likely get a regular room sometime this afternoon. Yay!

We've been fortunate to have good doctors, respiratory therapists, nurses, etc. Our main nurses have been Amy and Melissa. They have done a great job looking after our Ollie and looking after us, too. They even pulled a reclining chair beside Ollie's bed so that I could snooze a bit during the night. I probably managed about 3 or 4 hours of sleep last night plus an hour "nap" in the cafeteria this morning. Yes, I said the cafeteria. During rounds, patients aren't allowed any visitors. So I headed to the cafeteria around 8am for breakfast. I found a booth to eat in and it was situated where I could lean against a wall, prop my legs and feet on the bench, rest my head on the seat back, and snooze. Do you think I might have been a wee bit tired?

I leave you with two Swedish proverbs that we have found to be quite true:

"Shared joy is a double joy; shared sorrow is half a sorrow."

and

"Friendship doubles our joy and divides our grief."

Thank you all so very much for keeping us in your thoughts and prayers.

Pre-Op Appointment

Well, we have a pre-op appointment on Tuesday at 11:15. I spoke with the pediatric surgeon's scheduling nurse, Marisol, on Friday. She was very nice and took a lot of time to answer my questions. And her answers were reassuring.

The surgeon usually does an open surgery for the Nissen. Marisol said that he often will try to start it laparoscopically but usually ends up doing the open procedure. Especially on a little fellow like Ollie, it's a bit easier to do the open surgery. Fortunately, the hospital stay with the open procedure is normally only 3 to 5 days. I know, I know..."only 3 to 5 days" isn't really a short period of time. But it is so much better than the 1 to 2 week estimate we had gotten from the pulmonologist.

I asked Marisol why a Nissen has become a standard procedure with a G-tube. She said to think of how it feels when you gulp down 20 ounces of water in just a few seconds. You feel really full and somewhat nauseous. When you get a bolus feed, it can feel much the same way. So the Nissen is done to make sure there is no reflux or vomiting that could be aspirated and cause aspiration pneumonia.

I've also chatted with a couple more moms of SMA babies. And they've all reiterated that the G-tube surgery was the best medical decision they made. (Again, a few said they wished that they had done it sooner.)

So, we're doing the pre-op on Tuesday and then we'll likely schedule the G-tube and Nissen surgery. I'm hoping to get all the doctors together - in person or via teleconference - to discuss the special issues related to anesthesia and surgery when a child has SMA.

Please continue to keep us in your thoughts and prayers.