Wednesday, August 25, 2010

Notice Anything Different About Isaak?




Or maybe this picture will help:




Or these two:






A bigger post with more details and a photo update will be up by this weekend.

Welcome home little guy!

Wednesday, August 18, 2010

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...

Tuesday, August 10, 2010

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.

Sunday, August 8, 2010

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.

Thursday, August 5, 2010

Happy Birthday, Oliver!!!

Two years ago, our lives changed for the better.  After nearly 36 hours of labor, Oliver was born via c-section at 3:06pm.

The weekend of August 1st, 2nd and 3rd were tax-free in North Carolina not to mention it was back-to-school time.  As a retail store manager, even one who was nine months pregnant, I was scheduled to work.  A number of customers offered to help me up off the floor after measuring their child's feet.  Several of my "regulars" commented, "Haven't you had that baby yet?"  My due date was the 1st and it came and went without nary a contraction.  On Saturday the 2nd, I worked half of my shift before heading home as I was having mild, intermittent contractions.  They continued, albeit sporadically, on Sunday. 

Neil and I headed to bed Sunday night wondering when the contractions might intensify or come at regular intervals.  Although we wanted to, we hadn't been timing them.  I got up to go to the bathroom - again - around 4am Monday.  Nothing out of the ordinary.  But as I tried to go back to sleep, the twinges seemed more regular and a bit longer.  I pulled my watch out of the drawer of my nightstand.  About 30 seconds this time, maybe 45 seconds the next.  Five minutes would pass then maybe ten minutes.  My excitement grew and I smiled to myself as I envisioned Neil's face when I would say "It's time."

I decided to let him sleep until 6:30am before waking him to tell him.  As if he could sense my anticipation (or maybe my fidgeting), he woke on his own around 6:15am.  I smiled at him and told him that I thought I was in labor.  His grogginess lifted quickly and he, too, became excited.  This was the moment we had been waiting and preparing for with regular visits to the OB and classes to learn about natural childbirth.  And, finally, it was here!

We waited until around 8am and I called the OB's office to describe the length, intensity and frequency of my contractions.  The nurse suggested I come to the office to be checked before deciding whether I should go to the hospital.  We grabbed the bag we had so carefully and thoughtfully packed and made our way to the doctor's office to see the midwife.

Four centimeters.  Wow.  I hadn't guessed I would be that far along towards the goal of 10 centimeters.  We got back in the car and drove around the corner to be admitted to the hospital.  It was Monday, August 4th.

Our doula arrived later that morning.  She had also been our Bradley Method instructor.  We walked the labor and delivery and postpartum floors around and around and around and around.  All three of us would pause every so often for me to lean into the planter in the middle of the hallway and breathe deeply through the next contraction.  I wore my sock monkey slippers and had a blue housecoat over my hospital gown.

My progress was slow.  I was still four centimeters when the midwife broke my bag of water to help me dilate.  It didn't take long for me to reach six centimeters.  And then we walked and walked some more.  But progress was still slow.  At the next check, I was only seven centimeters and I was exhausted.  We had been at the hospital nearly 12 hours.

Our doula had brought me some chicken noodle soup to eat, at some point, sneaking it past the nurses.  I wanted to have the energy to push this baby out.  The next major suggestion from the midwife was pitocin to help make the contractions stronger and hopefully help me to dilate.  Pitocin is evil stuff - right up there with magnesium sulfate.  Dealing with labor hadn't been too bad...until the pitocin.  It probably didn't help that I had been awake for over 24 hours.

I was proud that I hadn't had any pain medications.  I really wanted to have a natural, vaginal birth.  But after 30+ hours, I consented to an epidural.  Perhaps if I could get some rest and relax a bit, I would finish dilating.  When talk of an epidural began, my first request was to turn off the pitocin until the epidural took effect.  The midwife smiled knowingly and agreed to half the dose until the anesthesiologist finished his work.  It wasn't long before I fell asleep.  Neil took advantage of his opportunity for a well-deserved nap.

An hour or two passed and the midwife returned to check my progress.  Nine centimeters!  We thought we had success until I started having a contraction.  The midwife noted that during the contraction my cervix had gone from nine centimeters to seven.  It was time to call in the doctor and talk about getting into the OR for a c-section.

The OR was a busy, chilly place.  It took longer to get me prepped for the surgery than for the actual surgery to occur.  Right before the doctor began to cut, Neil was brought in to sit by my head.  He wasn't there but about five minutes when the doctor asked if he wanted to see his baby boy being born.  Neil stood up and saw Oliver for the first time.  Tears flowed as smiles grew -  he was finally here!  It was 3:06pm on Tuesday, August 5th, 2008.

It was the longest 34 and a half hours and yet it was the shortest 34 and a half hours.  But it didn't matter.  We were a family - Mama, Daddy and Ollie.

And two years later, we still are.

Tuesday, August 3, 2010

Ollie: August 5, 2008 - August 3, 2009

Smiles...

Curiosity...

Laughter...

Adventure...


Love...

Beauty...

Mommy...


Home

He was beauty and he was light. He was joy and he was sorrow. If ever parents were gifted with a more perfect expression of love, we can only think they must have perished from the intensity.

One little boy who could not talk and could not walk, but spoke unending volumes with his eyes and reached thousands with his story.

 That is Oliver. 

Our son.

To say we miss you can do no justice to the pain still in our hearts, but everyday we see you in a flitting dragonfly or on the velvety wings of a butterfly.  We hear you in the utterance of a kind word and feel you in the gentle breeze. 

We know you through your beautiful little brother and tiny little sister.

Most of all, we know you by your love.

Rest easy little boy. Your light is still shining.


Monday, August 2, 2010

Penny loves being at Home and Isaak is Complicated

First the short update: Penny is doing great.

Really, that's about it. She had her first visit with her regular pediatrician on Friday and a follow-up today to make sure she is gaining weight. She gained 2.5 ozs over the weekend (for a grand total of 5lb 15oz) so we are supposed to just keep doing what we are doing. She is being fairly merciful to mommy and daddy by sleeping 4 to 4 1/2 hours at night after her big bottle. Mostly, she eats, sleeps and goes with mommy to see her big little brother (or is that little big brother?)

Isaak, well, he's doing OK, but his story is, as usual, more interesting (strictly in the Chinese proverb sense, of course). They managed to get him up to 12ml per hour of milk via g-tube on Thursday. They have been holding the line since, as while he's not dumping, everyone feels he's at some borderline state. They have bumped the calories a bit on his feed so they don't have to increase his TPN quite as much. He's getting a total of 3ml per hour of TPN and IV lipids so that's 80% of his calories via g-tube, which is fantastic. Even so his bilirubin has continued to climb a bit at a time. It's not really really high, but it's over 5 so they'll be keeping watch on that. It may or may not be related, but he's also a bit anemic,with a hematocrit (red blood cell) count of 25.8 (30 being normal) and a reticulocyte (immature red blood cell) count of 1.8 (5 being normal). Bilirubin is made up of the remnants of red blood cells and his seem to be going somewhere...like I said, may or may not be related. He's still on very low flow oxygen (50ml per minute). We would not be surprised if that stays the case while he is anemic.

The edema seems to be much better. They cut his lasix course short because he was doing so well and apparently is peeing up a storm. Let's hope that continues. Positive news is always welcome!

A big concern we have not previously shared revolves around his eyes. Preemies are very vulnerable to a condition called Retinopathy of Prematurity, or RoP. As has been their pattern, Penny has shown very little evidence of RoP and nearly has mature eyes, while Isaak has had more difficulty. His right eye is in "Zone 2" of development with "Stage 3" RoP. Not great, but also likely to self-resolve. His left eye is also "Zone 2" and "Stage 3" but has exhibited significant hemorrhaging. The ophthalmologist, while not entirely optimistic, does indicate it's not unlikely the situation will resolve itself. If it doesn't, he may have to have some of the hemorrhage removed from his left eye and possibly have laser surgery. They have been following him weekly and the next update will be on Friday. Outcomes are generally positive with surgery nowadays, but man do we not want to go there. This poor little fellow has seen more surgery in his short life than most people ever do.

So while all that doesn't sound particularly positive, Isaak really is doing well. He can be very alert and loves to be cuddled and to be (dry) fed by his mommy. The little guy is strong enough to actually try rolling himself over nowadays (can't do it, but does try if he's not swaddled).