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.

Penny goes Home! (and Isaak has a scare)

In the biggest news of their short lives so far, one of the little monkeys has made it home. Penny decided a couple of weeks ago that, yes, she was about ready to go and pulled her own oxygen off. It took a bit to get her to completely oral feeds, but she got there this week. Mom roomed in with her a couple of nights and all went well, so here we are. Her first night was a little challenging as she decided to wake up a couple of times - and apparently has learned to cry finally. Mommy and I are a little tired but very happy (nay ECSTATIC) to have our little girl at home.

Proof is in the pictures!

Thanks to Amanda M. for getting the great pictures at UNC. We silly people had forgotten our camera. You will note in the pictures that her first outside world stop was the cafeteria at UNC - we didn't quite get to leave when we wanted as little brother decided drama was in order (maybe to keep his twin nearby?)

So Isaak...he had a rough evening yesterday. In the late afternoon, probably around 5, I noticed that his heart rate was really low. It often goes low when he's sleeping, but this was around 130 rather than the 140 that is normal. I mentioned it to the nurse and she immediately took his temperature and it was way too cool. He also wasn't really moving much at all. Next thing I know, there were 6 nurses, nurse practitioners and doctors in the room, all while I was standing there holding Penny. Poor mommy wasn't there because she was getting Penny's car bed ready out in the parking deck (little girl is not quite ready for a seat) so I had to text her what was going on.

First order of business was a warmer to get his temp back up and then they took a bunch of cultures looking for infection. We won't know anything about that for 3-5 days. Unfortunately for the little guy, one of the cultures they decided to take was via lumbar puncture. We weren't terribly keen on that particular procedure, but the docs indicated that one infection that can cause a temp drop rather than a fever is meningitis and that we would want to catch that right now rather than wait. One of the other infections that can cause a drop is sepsis, so that's just scary as crap all the way around.

On the positive side, he either responded well to the antibiotics or to the warmer and by the time we left (11pm - 8 1/2 hours after Penny's "discharge") he was acting much better. He was wiggly and vocalizing so we are crossing our fingers this is just a blip.

We haven't been to see him yet today, but the nurse reports that he is pretty active this morning and was fighting back during assessment. That's a good sign. Let me tell you, this whole thing points out how important it is for a parent to know their child's normal behavior, even at this early age.

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.

Quick Update

So Isaak is doing pretty well today. He is still on the vent and they will not be trying extubation until tomorrow. They were hoping for today but he is simply spending too much time riding it (letting the machine breathe for him). I'm sure he is tired and very sore so this is understandable. He received a red blood cell transfusion today in hopes that it primes him for coming off the ventilator and helps him kick the lingering anemia problems he's had.

In Penny news, she is proceeding to plan. It is also looking likely she will finally get to join Isaak at UNC. This makes daddy sad because she won't be 5 minutes from work anymore, but it is fantastic for mommy as she works on getting the little guys to nurse.

That's it for now.

Isaak's Follow-up Surgery Open Post

Hello everyone.

We will be updating this post as the day progresses, so if you are keeping the blog open, just remember to refresh your browser once in a while.

3:50pm: He's out and looking good. We met with the surgeon about 30 minutes ago for his report and then visited little guy. Mom's still in there while I step out to update the wider world. His bowels all looked very healthy and were already showing signs of growth and change. Due to some adhesion, they could not really measure the total length, but they only needed to trim a few millimeters from each end to get to the healthiest tissue to reconnect. That is a best-case scenario! The Broviac was placed in an "external" jugular (not the big one from the head). The surgeon was very happy with the location and placement. G-tube surgery went fine and they were able to use the incision from his initial surgery for both the reanastomosis and the g-tube, also good news. They examined his liver while he was open, and it appears to look like a liver for a baby that has been getting TPN for 2 months. Not good, but not terrible. Hopefully, he will be able to begin feeds soon and can begin getting substantial calories from enteral feeds. If he can get 50% of calories from milk, that greatly reduces the risk of liver damage and long term complications. It will be several days before we really know how well he'll be able to feed short term and a matter of weeks before we understand the overall trend and prognosis. So, all in all, things have gone as well as we could have hoped. Now we wait and let him heal.

1:30pm: Something to report! Isaak's nurse just called with an update from the surgery team. They have completed the Broviac and the reanastomosis and are beginning the g-tube. That should take about an hour. He'll then have roughly an hour in recovery after that, so hopefully we get to see him back upstairs by 3:30 or so. No report on what was found yet - won't have that update until post-op.

1:15pm: Nothing to report. We are clearly hoping this is good. He's been back about 3 hours now and we are a couple of anxious parents. Just took a walk around the hospital locating all of our dining options so we don't get burned out like we did last time. Thanks for all of the kind words of support!

11:10am: Our little guy is in surgery now. He was taken back about an hour ago and the plan is to insert the Broviac Catheter first followed by the reanastomosis and g-tube. It's a lot for Isaak to go through and we are probably looking at a 4-5 hour total surgery time. The anesthesiologist suggested that he be intubated at least through tomorrow due to the stress and the limits to the amount of narcotics they can give a preemie for pain control (They can give more if he is on a vent). OK, so I misinterpreted the conversation and Bekka clarified. It's true they have a limit to amount of narcotics they can give for pain, but the main reason for intubation was to allow full-on general anesthesia. Theoretically, just the abdominal surgery could have been done with a caudal anesthetic (essentially a spinal block). Doing the Broviac nixed that option as they are operating above the waist.  He did really well when intubated last time and came off with no problems so we are hoping for a similar situation this time. They should update us as they finish each procedure and we will try to get something posted.

The only constant is change...

Isaak's surgery has been moved up. We're on our way to the hospital now. He'll likely go back around 9:30-ish.

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!

Not Quite According to Plan

So UNC has no room for Penny right now. Looks like we will have babies in two places again. Not sure how long that will last but we are certainly hoping for as short a time as possible.

Isaak is at UNC now and we are heading up to see him.

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.

Two Things

1. Something is wrong with Blogger/Blogspot right now and comments aren't showing up. A few have been made recently that just aren't there. This seems to have occurred in the last 48 hours or so as there are thousands of entries logged on a message board at Google. Feel free to post, just don't be surprised if it's not there. Hopefully all will show up again when they straighten it out.

2. I completely neglected to mention a very important piece of information in the last post:

Isaak cracked 2 kilos!

His last reliable weight was 2070 grams. He was 101g heavier (2171) last night, but we are pretty sure that is not entirely correct as he was weighed in the isolette vs. the scale (yes, he is also back in the isolette as he was unable to keep warm...another sign of his anemia and possible infection). If we can get the little fella well, this should mean that surgery will be on schedule next Tuesday.

My Son is a Vampire and my Daughter Eats via her Scalp...or Just another Day in the Life of a Micro-Preemie Parent

So the last few days have been challenging. The slightly macabre post title really doesn't even capture the half of it. In the back of our minds, we sort of had the idea that things were sailing along too smoothly. The next big bump appeared to be Isaak's ostomy reversal (next week if you can believe that!). We dared to hope that all was well. The twins had other ideas. The main one?

Scare the crap out of mommy and daddy.

So we don't know if we are out of the proverbial woods with them yet, but here is a quick rundown of what has transpired since Thursday:

Thursday afternoon, it was becoming pretty apparent that Penny was not feeling well. She was not complaining during diaper changes or assessments - usually she cuts up like crazy - and her little belly was starting to look distended. You can see now that we were suddenly terrified (absolutely, unbelievably terrified) when thinking about where this could be headed. Yes, the very real possibility that our little girl had NEC reared it's ugly, cobra-like head.

X-rays showed there were large gas bubbles in the intestines but no free air. All oral feeds were stopped and TPN was ordered up. The last thing you want to do in a NEC case is keep shoving food in there and complicating things even more. Repeat X-rays were carried out over the next couple of days. Nothing that could be interpreted as NEC showed up, and Penny continued to have good bowel sounds. Eventually, she passed all the air and they began very low volume feeds on Sunday. They will gradually ramp her up during the week to full volume while monitoring her response very, very closely.

So what was this episode? Is it really resolved, or will it return? The answer to both of those questions is, unfortunately, "No one knows." They think it might have been a reaction to human milk fortifier (HMF). She has been getting this since about week 2, but feed volumes have really been bumping up lately and so it might have crossed some comfortable threshold.

We wait with bated breath as she moves back to oral feeds. They are going to withold HMF and just feed her mommy's finest until her volume is all the way back to max. We are by no means out of the woods but at least positive progress has been made. Cross your fingers!

In the good news vein, she has spent the whole day sans supplemental oxygen or flow. Her sats have stayed in the upper 90s and she has been a little trooper.

Oh, the "eating via her scalp bit"? Penny is a very bad "stick" when it comes to placing IVs. (Remember they were never able to place a PICC line in her.) After 3 IVs in 3 days had to be replaced, they resorted to a scalp IV. Apparently there are "lots of juicy veins up there." So far, so good. She's been happier and her IV hasn't acted up. Here is her IV/Hair Bow (via cell phone cam, so not the greatest):

On to Isaak. Little guy is getting a transfusion today and tomorrow and is on two different antibiotics, an anti-fungal and they resumed caffeine.

Not yay.

He had been just cruising along gaining weight and flirting with nurses. Then on Saturday he had a low hematocrit, low white cell count and low(ering) platelet count. He wasn't really acting up, but wasn't fully himself. Another set of blood work this morning confirmed the trend. Even lower readings were recorded AND he had slightly elevated CRP levels (C-reactive protein). At the same time, he was beginning to have more bradycardia and apnea events.

All this likely points to an infection. According to the doc, the blood work is behaving more like fungal infection, but given his history and the recent changing of the PICC, she would suspect bacterial. Changing PICCs can release bacteria into the bloodstream even though they do everything they can to avoid it.

So he probably has something.

Maybe.

It could also just be stress and anemia (which he certainly has).

Pending cultures, they will continue the medication. You do NOT want your preemie to get a full-blown infection. Their immune systems just aren't up to it and prophylactic antibiotics can head off major issues. The caffeine already appears to be reducing his apnea and bradys and the transfusions should help bump his energy level up. We really want him to be healthy next week!

To add to the stress on his little self, he has also gotten 5 immunizations over 5 days and it's possible that those are messing with his body and all the readings. He needed them and was doing fine when they began but there is a reason they only give one a day to these little guys! (You'd get them all at once if you were a normal 2 month old...and you would do just fine). Penny is on day 4 of 5. They started on the same day, but had to suspend hers due to her difficulties. She seems to be a-ok so far.

So that is all the news that is fit to display via photon emissions. We'll hopefully have another (positive) post up sooner rather than later.