Monday, August 31, 2009

We've been blessed with Charlotte for 3 weeks already - I can't believe how fast it's gone. It seems like less than a week ago Patrick and I were heading to the ER.

Today was a pretty good day, although, she basically undid everything I posted yesterday. Her weight dropped to 1 lb 15 oz (hopefully she got enough rest today to regain that ounce) and her upper right lung was once again collapsed on this morning's x-ray.

However, Dr. Frei and the nurses did transition her from the oscillator back to the regular vent, which means they are able to continue reducing the sedatives she was receiving. It's so nice to see her squirm again! The nurses reposition her regularly so she doesn't spend all of her time in one position, but this afternoon she had enough energy to reposition herself - usually not to a position the nurses preferred.

On the same day she was put on the oscillator, Charlotte had been put in "contact isolation" due to a suspected staph infection. This meant that anyone who touched her had to wear gloves and an extra gown. Today the doctor determined this was not necessary, and it was wonderful to be able to touch her again without a latex barrier.

Tomorrow brings the first of September and one day closer to taking Charlotte home.

Sunday, August 30, 2009

Today was a special day - Charlotte broke a barrier weighing in at over 2 lbs, 2.04 lbs to be exact. We thought she was looking bigger.

We learned this morning that Charlotte's upper right lung was still collapsed, so Dr. Frei requested the pressure on the oscillator be turned up slightly and that Charlotte spend most of her time propped with her right side up. It worked! By this afternoon Charlotte's lung had opened up and she got permission to once again lay in her favorite position - on her belly.

Other than that, Charlotte held steady today with no big changes. This afternoon Patrick returned to Houghton for a few days of work, and I look forward to his return on Wednesday.

Saturday, August 29, 2009

It was a pretty nondescript day around here but, after yesterday, nondescript is welcome.

Charlotte's vitals have improved since going on the oscillator. Her supplemental O2 was down to 30% when we left this evening. As with everything else, how long she remains on the oscillator depends on her progress.

As hard as it is to watch her shake on the oscillator, it is somewhat reassuring to know that it is actually easier on her.

It also turns out we're fortunate that Marquette General has this machine at all. They've only had it for a couple years and previously she would have been transferred to Ann Arbor or Milwaukee.

She has been on a sedative for a few days now. That has reduced her level of activity quite a bit, but today we got to see her open her eyes for a short time.

Right now the focus is on bothering her as little as possible. When they reposition her, take blood, or any other disruption it really irritates her and it takes a bit for her to settle back down. So they make every effort to do everything in one shot in order to limit the disturbances.

Bacteria and viral cultures should be back next week.

Friday, August 28, 2009

Charlotte's third week of life continues to be challenging.

Her lung development has regressed and today the regular ventilator was replaced by an oscillator which gives rapid short breathes. When we left this evening she was receiving air oxygenated at 82% which is very high and not good over long periods of time.

The oscillator also makes her whole body vibrate which, in combination with her lack of activity due to sedatives, makes it very hard to watch her.

The infection in her ET tube was narrowed down to a staph, which should have been taken care of by the vancomycin. The doctor consulted with a pediatric infectious disease specialist from Grand Rapids and decided to repeat the original cultures and add a viral culture.

Other activity included another x-ray of her lungs, another ultrasound of her heart, and another transfusion.

With my dad's departure for Eau Claire today, we are all by our lonesome for the first time since Charlotte was born.

Also I will starting my first semester of grad school from the NICU next week so thank goodness for ubiquitous wi-fi.

Thursday, August 27, 2009

The culture of the fluid from Charlotte's ET tube came back positive for bacteria. They are still working on the specific bacteria, but Dr. Frei feels confident that they have whatever it is covered with the two antibiotics Charlotte is currently on. No growth from blood cultures so far.

Today it seemed that her levels on the ventilator were constantly being adjusted in response to her vitals and CBG (capillary blood gas) results. Increase pressure, hold breaths per minute constant, raise O2 saturation. Lower pressure, increase breaths, hold O2. Lower O2. Rinse and repeat.

It makes it hard to tell exactly where she is at, but Dr. Frei and the nurses all treat it as if its completely normal. Which it probably is, but none of this seems completely normal to us yet.

Feedings resumed earlier today, but she had bile in her stomach again this evening, so scratch the feedings for the time being.

Since she was born her long-term health and well-being has been the biggest source of distress for us. But in recent days, as we've slipped into the onedayatatime routine it no longer occupies every waking thought. But it's been replaced by the stress we feel as we watch her get poked and prodded and injected and scanned constantly day after day. Each time her brow furrows or she flinches it's hard to feel anything but helpless.

But tomorrow is another day - Day 17 is in the books.

Wednesday, August 26, 2009

Charlotte didn't receive any more sedatives today, and it was nice to see her moving around again. She had her eyes open for about an hour this evening - the longest we've seen!

Another x-ray showed her ventilator tube needed to be readjusted again, and the nurses did that oh so carefully; it's hard to watch them adjust tubes going down her throat. The doctor said her biggest struggle will be with her lungs and that tomorrow we'll know more about how she's doing.

This evening her stats looked great and they've begun once again weaning her from the ventilator. We know we should be prepared to see her go on and off the ventilator, but we would love to see her go off the ventilator for good.

Thank you for all the supportive and encouraging messages posted here. They help us to feel less isolated in the hospital and it's heartening to know that other people care about Charlotte.

Tuesday, August 25, 2009

Today was a tough day. Charlotte was working very hard, too hard to breathe on the CPAP and at about 12:30 p.m. the doctor and nurses decided to intubate her again. The doctor then requested an x-ray of her lungs and an ultrasound of her heart. More blood was drawn for another culture and she was started on an additional antibiotic as a precaution.

Her heart looked "perfect" but her lung x-ray showed that the ventilator tube wasn't situated quite right and it was a little fuzzy due to the air filling her stomach from the intubation. They then readjusted her ventilator tube and hooked her up to a little pump that pulls the extra air from her stomach.

Throughout the afternoon her blood-oxygen saturation dropped to the 60s (90-95 is desirable) multiple times for no apparant reason, but an additional x-ray showed that the ventilator was too low and blowing primarily into the right lung. After pulling it out slightly she was able to rest more easily.

Her skin looks paper thin with her veins highly visible. The nurse said that happens when she feels sick. Hopefully the readjustment of her tubes, pumping air out of her stomach, and a second blood transfusion will help her recover quickly.

Monday, August 24, 2009

Charlotte is officially 2 weeks old today! Her weight is waivering between 1 lb 9 oz and 1 lb 10 oz, but apparantly this is enough of a change from her 1 lb 7 oz birth weight to increase her diaper size. According to tonight's nurse, the bigger diapers are less "flimsy."

With the help of the CPAP and a vibrator, Charlotte's air sacs are opening back up and she's breathing quite well. The best news of the day - the doctor said she could begin eating again today and she has been digesting her milk. She received 1 ml every 3 hours and we hope she can keep it up.

Katie returned to Marquette today from Hougton after a 2-week follow-up appointment. All went well. It was great to get a ride back to Marquette from Grandpa Russell as one night away from Charlotte was hard enough. Patrick will be staying in Houghton until Wednesday to work a few days and take our car in for a new timing belt.

Sunday, August 23, 2009

Bath time!

Saturday, August 22, 2009

Waking up to watch the World Championships Marathon online this morning I realized I was originally supposed to be running a 50 mile race in Hot Springs, SD today. What a difference a couple weeks can make.

It was a very active day in the NICU. Luckily for us it was pretty uneventful, save the fact that Charlotte went back on the CPAP around midnight.

Thanks to Kelly and Paul Simon for visiting. We got out of the hospital for dinner and movie with them this evening.

Coming back late, we stopped by the NICU to pick up the pumping items and followed an air transport crew coming in. They were there for a different baby, but as we looked in we could see the light on in Charlotte's room and some activity around her.

We scrubbed in and saw that they were making the final adjustments on the CPAP. Even though we knew it was probable from the outset and there is no reason not to remain optimistic, it was hard to see her go back. It was so nice to see her face for a prolonged period of time.

That, along with the two other babies that had serious difficulty today, brought us back to reality a bit and reminded us there is a long road ahead. She is only 12 days old after all.

And in that frame of mind we, unfortunately, have to leave Marquette for an evening and head back to Houghton. Katie has her follow-up appointment tomorrow. My dad volunteered to come back to pick her so I can stay in Houghton for a few days to get things in order after two weeks away.

Friday, August 21, 2009

A rainy Friday in Marquette (and pretty much everywhere else by the sounds of it).

The two neonatalologists in the NICU work on two-week rotations. Today we met the other doctor, Dr. Frei. Her style is different from Dr. Paxton. He was very knowledgeable, but came off a bit gruff. Dr. Frei interacted with us a little more and seemed to spend a good deal of time familiarizing herself with Charlotte's info.

Dr. Frei decided it was time for Charlotte to receive a blood transfusion today. They've been taking small amounts each day to measure her blood gases. Since she is so small and doesn't have the ability to replace that blood as fast as it is being taken she needs the transfusion to ensure her hematocrit stays in a healthy range.

That involved inserting an IV in her right hand, so now we're pretty sure there aren't many more parts to poke on her.

So far so good on the nasal cannula, but she seems to "desat" a little more frequently so it's probable that she'll go back on the CPAP sometime in the near future.

"Desat" is fancy doctor term for desaturation of oxygen in her blood. They are trying to keep the concentration of O2 between 90-94%. If it falls below 88% an alarm goes off. Sometimes it goes off just because she is moving around and messing with the sensor. At first we would get anxious if nobody was there right away, but we've learned to tune it out most of the time.

We're learning all sorts of medical terminology - desat, CPAP, vent, picc line, UVC - we might be able to take the neonatal board exam after this is all over.

We also hear many things, when taken out of context, are pretty funny. For example, "Jen, have you weighed my diaper yet" was uttered the other night.

Thursday, August 20, 2009

Patrick decided I should write the next update, so this one's from Katie. Today was day 10 in the NICU for Charlotte. The nurses feel it's ok for us to hold her for 1-1.5 hours a day, and today was Pat's first opportunity to snuggle with her. She was absolutely content on his chest and we both agree that we could hold her forever if they'd let us.

Another step for Charlotte: today they removed the CPAP and replaced it with a nasal cannula. The cannula provides a little less air pressure than the CPAP to keep her lungs from collapsing, but she continues to breathe completely on her own. It's very possible she'll need to go back on the CPAP or even the ventilator, but so far she's doing well. Her next step with regard to breathing would be to breathe independently.

Today's nurse gave Charlotte a brief break from the bili blanket, which meant we got to see her without foam goggles on her eyes (they protect her eyes from the blanket's light). She opened her eyes to check things out and luckily, we had our camera at hand. Patrick posted the photos and they're some of my favorites.

Tomorrow will bring another x-ray of Charlotte's stomach. She passes stool in response to being given a suppository, but hasn't quite mastered the digestive process. Monday's blood culture for an infection in her intestines has not yet shown any growth (yay!), but the doctor says it could take up to a week (although less likely after 72 hours). She will continue on antibiotics just in case and won't return to milk feedings until the doctor is ready to try again.

Everyday she shows us how strong she is and we love her more and more!

Wednesday, August 19, 2009

A pretty standard day around here. Charlotte was much calmer while Katie was holding her. It looked like both of them were about to fall asleep.

The main issue that the doctor and nurses are dealing with is Charlotte's inability to digest her food. It sounds like she'll stay on the antibiotics for the full ten day cycle even though there has been no result from the blood cultures yet.

Tuesday, August 18, 2009

We got an early present this morning when Katie got to hold Charlotte (tubes, wires and all) for the first time. Skin to skin contact is supposed to help Charlotte and Katie sure didn't mind it either.

Katie also got outside for dinner and a drive around Presque Isle tonight. It's only the second time she has been out since she got to Marquette.

Charlotte had a spike in her blood sugar earlier in the day, but it was back to normal quickly. The nurse surmised she probably cut off her line with her leg and when she released she got a big surge from the back up.

Breathing is still good and she still has a lumpy stomach from her full intestines. Overall a pretty stable day.

Monday, August 17, 2009

It's hard to keep track of what day it is. It feels like we're living life in three hour increments. That said, I did get out for my first run in a week - a short 25 minute jaunt- and got to see the sunrise over Lake Superior.

A mixed bag for Katie and Charlotte today. Katie is about the same. She did a good job of getting some more rest today. She woke up looking very pale, but after a Southwest Taco Salad from Wendy's for dinner she had her color back and her BP was down this evening. Also the bleeding/draining from her incision is way down.

Charlotte is now receiving a broad-spectrum antibiotic. After an x-ray of her intestines earlier today showed she was "backed-up", they decided to run some tests for infection. The blood culture that is coming back in a couple days should determine any specific infection she may be fighting off and the treatment can be more targeted. In the meantime they have her on the antibiotic as a precaution.

She also got an ultrasound of her brain today to determine blood flow and tissue growth. We haven't heard anything official, but it sounds as though there wasn't anything out of the ordinary.

Charlotte did not appreciate the disruption, but it did provide an opportunity for me to hear her cry for the first time and, for now, that is a sweet sound.

Katie and I got to give her a bath this morning, which she also did not like one bit. The "bath" really consisted more of wiping her down, but it did require taking off the CPAP and her feeding tube so we got see her face unobstructed for the first time in a week.

Sunday, August 16, 2009

Charlotte moved off the ventilator today and is now wearing a CPAP (Continuous Positive Airway Pressure). Where the ventilator prompted her breathing according to the rate set on the machine (20 breathes/min for example), the CPAP only provides pressure to keep her airway open. So it's sort of inbetween the ventilator and breathing no her own.

There is very good chance she will go back on the ventilator at some point, but the nurses emphasize that it is typical and should be viewed as part of her transition, just like the feedings.

Katie is feeling so-so. No trips to the ER today (I'm sure all our friends down there miss us) and she has been resting more. Her BP was down a bit so we'll see if that trend continues with her new medication. We got out for a walk (wheelchair for Katie) down to Beacon House with my mom today.

We may choose to stay there long term once Katie is feeling better. They have a nice, full kitchen and a good freezer for milk. For right now its nice to be so close - especially when I have to sleep-walk milk down to the NICU at 12:30 a.m.

The Birth Center here has been busy this weekend. Yesterday three women gave birth within 50 minutes of eachother and another one was wheeled in at the same time.

Marquette General does something really nice whenever a baby is born - they play a snippet Brahms "Lullaby" over the PA throughout the entire hospital. When Katie, my mom, and I were eating dinner in the cafeteria tonight it came on again. The only drawback to all the births is a very busy waiting area.

Saturday, August 15, 2009

So far no day is complete without a couple trips to the ER for Katie. Three more trips and we get a free one I think. Katie came away with a new bandage on her incision and some medicine for her high BP.

My dad headed back to Eau Claire yesterday morning (with a quick stop in Houghton to pick up some things). He handed them off to my sister Kelly in Rhinelander as they crossed paths. She arrived early this afternoon.
Unfortunately only parents and grandparents are allowed in the NICU, but it's still good for us to see her - and congratulations to her and Tim on buying their first house.

Dennis and Kathy left for Minnesota earlier today. They certainly have had quite a week, watching over their own daughter as well as their granddaughter. We'll make sure we to keep them updated on both ladies.

Charlotte continues to do well. They've reduced the ventilator respiration rate from 20 breaths per minute to 10. This will encourage Charlotte to breathe on her own some more. She has gone back and forth on the feedings. They had stopped for awhile, but today she digested the milk fine. When they checked her stomach again this evening she still hadn't digested her last feeding. Try again tomorrow.

It's a process. We'll go back and forth with a number of things over the next few months and we just have to learn to roll with it.

She is an active little girl though. We may be a little biased, but she is extremely entertaining to watch. Never has a yawn and ear pulling been so exciting.

Friday, August 14, 2009

The days fly surprisingly quickly around here. We definitely are not sitting around here twiddling our thumbs.

Katie has been steadily improving, although we've had a couple trips to the ER here yesterday and today. Nothing serious, some bleeding from her incision and a bloody nose. But the blood tests came back positive and it just served as a reminder for her to get some rest.

Charlotte continues to remain stable and show small improvements. Its possible she will come off the ventilator tomorrow and get a chance to try breathing on her own. She started a getting a small amount of milk Wednesday, but she hasn't quite been digesting everything yet - although she's producing quite a bit of poop for such a small girl.

She had her eyes open for quite awhile when Katie and I were in the room this morning. And she continues to wriggle around a lot. She also seems to enjoy settling in seemingly uncomfortable positions - legs and arms askew.

Four days old and still going strong.