August 30, 2010

Since our last blog post I've been an absentee parent, only coming home to sleep a few hours before hurrying back to work for new student orientation. It's exciting to have all the new students back on campus, but I'm very happy to have spent this evening with Charlotte! I missed her (and Pat) very much!

While I was working Patrick took Charlotte on a tour of the Keweenaw and snapped the above photo. So beautiful! That same day he took Charlotte to see her first triathlon, but unfortunately it was a bit chilly for her to be out too long.

It looks like she enjoyed the time she was there, though. Here Patrick caught her mid-clap. She's started clapping pretty frequently now, and that's been fun.

In addition to clapping, Charlotte has developed many new skills over the past couple of weeks. She first crawled while skyping with my parents; Patrick would pull the computer away and she would crawl toward it. For a while the laptop was the only thing motivating enough to get her to crawl, but that's quickly changing.

She can sit up from lying down completely on her own. It's amazing how coordinated she's become in a matter of days. She is able to pull herself up onto her knees and I'm sure it won't be long until she's able to get up onto her feet.

Since Charlotte can now sit up independently and is starting to pull herself up we lowered her crib tonight. Here she is checking out her new digs.

Such a sweetie! I love seeing her smile and here you can see her teeth! She had about 4 last I checked - two on top and two on the bottom.

The last weight I could find in her blog was from July 30 when she weighed 15 lbs 15 oz. Today she weighed 18 lbs 14 oz. Wow. This is faster weight gain than is recommended for infants and we keep waiting for it to level out, but so far, each day we're shocked at the new number on the scale. Charlotte's pediatrician recommended we feed her less per day, but the dietitian at Children's Hospital wasn't concerned. It's tough when you have to choose whose advice to follow, so we've decided to relax a bit with the amount of time Charlotte is on her pump. Rather than rushing through feed changes to make sure she's being fed for 23 hrs/day we give her a few extra minutes tube free to play and bathe.

The new tube has helped Charlotte to throw up less, she now only throws up 3-4 times/day and it's a small amount of bile. We do about 3 fewer loads of laundry per week and have plenty of extra burp cloths. Yay!

Charlotte loves daycare! At first she wasn't quite sure how to react to the other kids but now she enjoys watching them. She still doesn't like when they touch her (one girl in particular was fascinated by Charlottes hemangioma and wanted to poke it) or play too close but when we dropped her off today she was very interested in what the other kids were doing, so I'm sure she'll be joining in soon enough.

It's a good thing she likes daycare because she already got her first cold. It was pretty nasty and even gave her pink eye (who knew! Not all pink eye is contagious, it can be caused by a cold.). Her nose is still runny today, but she's back to her cheerful self. We're glad she's building up her immune system but are bracing ourselves for a long winter of runny noses.

August 11, 2010

With drilling going on across the hall, Charlotte got an early birthday wake-up call yesterday. That made for a cranky morning. But after a long mid-day nap she was ready to celebrate and entertain!

Katie spent the previous couple of days baking and frosting cupcakes to bring to our respective workplaces. Charlotte and I dropped some off at the library and then visited Katie at work where she got some more birthday gifts. Here she is sporting the stylish wear her babysitter Andrea gave her:





Then family from Florida and Minnesota visited. We all went out to dinner (Charlotte brought her own) and returned to eat cupcakes....or whatever you would call this:




Last week Charlotte got a new, smaller/lighter feeding pump. We still had to use the bag from her Joey pump, but today she got a stylish new accessory:

Infinity doesn't seem like a good name choice. Enteralite Temporary inspires more confidence.

I make this look gooooood.

It's much smaller and compact than her other setup which we hope will help as Charlotte becomes more mobile:



What you don't see in that last picture is Charlotte tipping over backwards soon after it was taken. So we're not quite there yet, but soon!

Tomorrow is Charlotte's first day at daycare, a milestone we've anticipated and dreaded at the same time. But Little Huskies has pretty much won us over already. Today I took Charlotte there for a short while to show the staff how her pump worked and other general care instructions. I know we're paying them, but we are appreciative that they are willing to take her in given that she requires a little more attention than most of their charges.

One of our main concerns is her tube getting pulled out by inquisitive little hands (other kids and hers). But they let me know that they purchased little backpacks and tubes for all the kids to have in order to downplay Charlotte's curiosity factor. Like I said, we're paying them, but that is over and above and I think it makes going into this much easier knowing there is that support there.

August 10, 2010: The Good

August 10, 2010
Acutal Age: 12 Months
Corrected Age: 9 Months
17lbs 3oz

Happy Birthday Charlotte! Enjoy your new enteral feed pump!


It's a party!

Who needs gifts when you've got wrapping paper!

Did somebody say cake?

Oh, that's what you meant by cake. No thank you.

Non-eating can be a stressful business.

@#&%$!


Sitting on great-grandpa's lap is a good place to be.


Working on my wave. Sort of half-hearted in this picture.

August 10, 2010: The Bad

August 10, 2009

In our experience* these are essential terms for new parents to be familiar with during the first year:

Complete blood count (CBC), ventilator, continuous positive airway pressure (CPAP), nasal canula, peripherally inserted central catheter (PICC), pulse oximeter, Methicillin resistant Staphylococcus aureus (MRSA), contact isolation, pulmonary hypertension, bronchopulmonary dysplasia, retinopathy of prematurity, nasogastric, gastronomy, gastrojejunal, stoma, enteral feeding, Mic-Key button, foley tube, emesis (mucho grande), grams in an ounce (~28), milliliters in a fluid ounce (30)

*experience not typical. Consult a neonatologist before using any of these terms.

We'll save the trite "oh how the time flies" and "what a year it's been" and just cut to the chase: the past year has been a grind, pure and simple. It has been long and difficult and to have made it through without suffering a nervous breakdown or divorce is a minor miracle. And marking a year on the calendar represents a little less of a milestone given how far we have to go.

That's not to say we feel sorry for ourselves in any respect because, first of all, Charlotte is amazing and worth every 12 hour drive and late night puke-fest. And also being in the NICU as long as we were, we saw how truly bad things can get and we didn't even approach it. Not even close. We brought Charlotte home and that is a gift that some NICU parent's don't get.

It's just the relentlessness of the past 365 days that has worn us to the bone. The feeding schedule. The pumping schedule (I'll defer to Katie on that one). The doctor schedule. And those are just the planned items. Being constantly aware of where the feeding tube is every time we pick up Charlotte is one of those sneaky things that drains a little bit of mental energy without really being conscious of it.

But Katie has developed an excellent assessment tool for us to take anytime were feeling stressed and trying to cope: The Side of the Road Test. In the darkest hour (usually around midnight on US 41 between Crystal Falls and L'anse) if we can ask ourselves "Would I be happier to leave Charlotte on the side of the road and drive off?" and answer "No", then we pass and move on. We've passed easily to this point.

It's hard to say how different things would be if Charlotte had been full-term. We've obviously had some things to deal with that full-term parents don't, but it seems a lot of it is relative as well. If Charlotte hadn't been 1lb 7oz and on a ventilator for weeks and so on and so on, wouldn't we just be stressed about other things like sleeping through the night or...as I'm typing I just realized I have no idea what sorts of things "normal" parents deal with. But I'm sure whatever there is, it is stressful because it's your child and tallying up who has had it harder is just semantics and a waste of time.

However, with all of that, I do think it is time to consider the real possibility that Katie or I violated some sacred burial ground.

August 2, 2010

"Why can't they just say, 'go to this place, and here is the treasure; spend it wisely'?"

The above quote is from the movie National Treasure and mirrors our exasperation in regards to many things in Charlotte's short life, from the night she was born onward. Why can't anything work properly without requiring calls to on-call medical staff and midnight drives?

We thought we were playing it safe after her initial GJ procedure by staying in Milwaukee overnight and checking out of our hotel at the last possible moment in order to ensure that all was well with the new tube. We talked to GI before we left and got the okay to occasionally vent her G-tube port to give her a little relief. Everything appeared to be in working order.

Our drive to Eau Claire to celebrate her first birthday was uneventful, save for the usual Wisconsin Dells insanity. However as early on as Friday night we began to have minor difficulty keeping her pump bag hooked up to her GJ tube. We would occasionally check her tube only to find her soaked and the pump disconnected under her onesie.

The issue got progressively worse over the weekend to the point that Katie would watch the tube disconnect as she was holding Charlotte while she was sleeping. We tried tape and twist-ties to no avail. The tube would just disconnect a few minutes later. Sunday morning I woke to find Charlotte and her bed soaking wet. She hadn't gotten fed all night.

It was at that point that Katie got on the phone to Interventional Radiology at CHW and we received the lone medical bright-spot of the weekend, the on-call nurse Sue. She listened to Katie describe what was happening and diagnosed a clogged tube. After three days! She had us try using soda water to flush the tube and that helped somewhat, but it wasn't long before the back pressure pushed the tubes apart again. Sue gave Katie the bad news that it was time to come back to Milwaukee. Katie said she sounded sincerely sorry, in our experience an unusual show of emotion from on-call medical staff. Sue did all the leg work to make sure the on-call doctor and another nurse would be there when we arrived.

We packed up with great haste and left my parents house in Eau Claire around 10:00. With a lone stop back in the Dells, we arrived back at CHW (cringe) at 2:45 and were greeted by Nurse Sue, Dr. Johnson and Nurse Chris. Dr. Johnson concurred about the clogged tube and Charlotte went back under the fluroscopic x-ray.

The first task was to confirm the current tube was clogged. Due to Charlotte's small stature, her current tube was the smallest they could go, 6fr. Typically the smaller the tube the more easily it can get clogged, a minor inconvenience for a family living in Brookfield. A nightmare for a family living in the UP. Dr. Johnson indicated that there was some blockage, but not necessarily enough to cause the issues we were having. Then we went over the various ways to tighten the connection of the GJ and the pump.

No solution presented itself, so it was decided that we go with a one-size larger J tube, 8fr. Apparently it is rare for an 8fr to clog, especially given that Charlotte is not on any sort of crushed medication.

This post is too long already, so the medical team did their thing, Charlotte got the new tube which seems to work (and has an adapter on the end that holds her pump connection great - where was that on the other one!), and we got on the road around 4:45p.m. arriving back in Houghton at 12:30a.m. She is back on her 23 hour/day feed and we're ready to be done traveling for awhile.

Through all this, the driving especially, Charlotte was amazing. She had very few fussy moments and bounced back after her second GJ procedure in four days pretty quickly.

But of course, that can't last long, and tonight Katie noticed that her gastronomy site is infected. Dr. Colleen at Portage Health (another call to an on-call physician! our raison d'etre) will see her tomorrow, but doesn't seemed too concerned.

Tomorrow we'll post some pictures from her birthday get-together. A much happier post guaranteed!

July 30, 2010

And the Grastrojejunal Tube is in place! It has been a pretty stressful 24 hours, so to start the blog I'm posting a fun bath photo from earlier this week. Look how much hair she's getting!

Yesterday we departed Houghton at 7 a.m. EDT and ended Charlotte's feeds at 9 a.m. CST in preparation for her 3 p.m. procedure at Children's Hospital of Wisconsin. At around 11 a.m. she woke up from her car nap and was the happiest, most content baby we have ever, ever seen. It was absolutely delightful. She stayed awake for the rest of the day (a first!) and played happily in the car and then in the hotel room when we arrived around 2 p.m.

Then we, being the cruel parents she has every reason to believe we are, took her to the Radiology center at CHW for her GJ Tube. This was supposed to be painless, but then we've heard that before.

Only one of us could be in the room with her during the procedure so I stayed while Patrick went to the waiting room. The Physician's Assistant performing the procedure had never seen an AMT button before and struggled to remove it. Another doctor made an attempt and just as their frustration was becoming clear and they were leaning toward calling GI to come remove it, it came out with one hard tug. By this time Charlotte is screaming with tears rolling down her face and I'm trying so hard not to cry (the PA said if we couldn't handle it we should both be in the waiting room so I had to look tough).

Of course placing the GJ Tube didn't go smoothly either. For some reason they had difficulty pushing it in but eventually everything was in place. In all, the procedure probably took no more than 15 minutes. When Patrick came back to the procedure room he surprised Charlotte with a balloon! She loves these balloons - so fun to play with. Here they are with the balloon back at the hotel:

We thought the GJ Tube would externally look just like the G Tube, with a low profile button. When we arrived the PA told us she had to be 20 lbs to receive the low profile version and since she's only 15 lbs 15 oz (almost 16 lbs!!!!) she got a bulky piece of hardware.

The picture above shows the material they gave us to wrap around her belly and keep the external portion of the GJ covered, away from prying, pulling hands.

And here is what we see of her GJ Tube. The round disk should be kept flush with her skin and just above it is a black mark so we can monitor if the tube is being pulled out of place. As you can see, there are three ports.

BAL. is the port used to inflate the balloon which holds the GJ in place. We are never to touch it because we would have no way of knowing if the placement is correct. Only Radiology can do this.

Gastric empties directly into her stomach. We won't use this port unless we are told to vent her G-tube and let the gastric juices out.

Jejunal empties directly into her intestines and this is where we hook in her pump to administer her feeds.

An up close view of the entry point which is often compared to the holes many people have in their ears for earrings.

Here she is all hooked up! The pump is now running at a rate of 45 mls/hr. She's yawning (not crying) in this picture.

I spoke with the Dietician at the GI Clinic this morning and she is decreasing the volume of Charlotte's feeds from 1050 mls/day to 805 mls per day. So, we'll be feeding her at a rate of 35 mls/hr 23 hrs/day. We need to flush the tube with 10 ccs of water every 4 hours to prevent it from getting plugged. If it does get plugged, get this - we can try to clear it with coke! If that doesn't work we'd need to bring her back to CHW for a fresh tube - not an easy thing for us to do in Houghton, but it'll happen if it needs to.

Last night was a rough night. Charlotte probably slept a total of 4 restless hours. I'm currently waiting on a return call from the GI Nurse to find out if we can do something to make her more comfortable.

On a side note, I've been told more than once since having Charlotte how lucky I am that she was premature and I didn't have to get so big and uncomfortable with my pregnancy. I want to let everyone know that having a premature baby is in no way a good thing. Having a premature baby that we got to take home is very much a blessing but I would trade any amount of pregnancy weight for a full-term, healthy baby. Even now it's heartbreaking to hold her hand and hold her down while she screams during procedures and last night to hold her for hours while she cried out of discomfort and threw up stomach juices. But again, the blessing is that we get to hold her and love her and know that things are going to get better, 20 years from now these will all be distant memories.

July 18

Another beautiful day on Lake Superior. After a week of 90 degrees in Minnesota it was a bit of a relief to come back to highs in the 70s (no break from the humidity however).

Charlotte has been so happy during the day this week. She plays for long stretches of time and is scooting around on her butt. No crawling yet though.

The trade-off has been some pretty intense nights. Between teething and stomach discomfort Charlotte has been protesting at pretty regular intervals overnight . We're interested to see what effect the GJ tube has. The longer continuous feeding regimen didn't pan out. She threw up just as much only smaller amounts, more often for 20 hours per day. So we're back on 2 hours on, 1 hour off until she gets the GJ on 7/29. Never thought I'd say I'm glad we're back on 2hours on, 1 hour off.

Getting less sleep overnight has meant that Charlotte sleeps a little later in the morning which mom and dad have both appreciated. After a relaxed morning we headed out with the intention of going to Hungarian Falls, but as we drove someone nodded off in her car seat and so we kept driving north for awhile, arriving at Seven Mile Point on Lake Superior.