October 31, 2009

Happy Halloween! I weigh 5 lbs!


Did you get any candy? I didn't, I was told I'm too little.


But, my daddy came back and we got to snuggle.


And, I wore two costumes. I was a pumpkin and a ghost.

October 30, 2009

The highlight of today was Charlotte's bath - something normal and fun for me, although she's not such a fan.

With regard to eating, she took a minimal amount by mouth. 2-3 mls here and there, and most of that was poured into her mouth rather than her really sucking. Tomorrow's a new day.

The poor girl developed a stye in her right eye - as if her eyes haven't been through enough. She'll receive a warm compress 4 times/day and it should clear up within a few days.

October 29, 2009

Charlotte's eye medications were discontinued today. Now that her eyes aren't continually dialated she was much more comfortable opening them, and I didn't have to sit in a dark room all day!

She did a little better with her feeds today. I got permission from the doctor to try anything, so I now take her clothes off before feeds and the extra stimulation seems to have helped a bit. They think she has a mild case of Thrush, but not severe enough to be impacting her feeds. Regardless, she's getting antibiotics for that.

She keeps gaining weight and is now 4 lbs 13.77 oz. She's even starting to outgrow some of her smaller preemie clothes!

October 28, 2009

Today was the 2-week post-op eye exam and Charlotte was not happy about it. Here's a photo taken shortly after the exam:

That's her "I'm angry don't even think about putting a bottle in my mouth" face.

On the upside, her eyes look great. The eye doc said she's done exactly what she needed to. She'll have another exam in 2 weeks (for which the attending doc wasn't sure we'd be in Milwaukee for - yay!), and then her eyes should get a break for a while.

Not much interest in eating today, maybe tomorrow. I asked the attending about bringing her home with her feeding tube and she wasn't opposed to the idea, saying it was a possibility although not ideal. We agreed to reevaluate once she's gone 5 days without any apnea or bradychardia.

October 27, 2009

Today was bath day and Charlotte loves her post-bath time in the towel.

We're still working on her feeds. After her bath she pulled out her feeding tube and then took 32 mls at her next feed (a full feed is now 40 mls). The nurse insisted upon putting the tube back in and she took around 10 mls at each feed thereafter. I'm sure it's not related, but I don't think I'd feel like eating with a tube up my nose. Today was the first day in a while where she took something at each feed, so it's progress!

Today was the big hearing screen and she passed. Not a surprise as she startles and looks toward noise, but nice to have confirmed.

Sounds like various strains of flu are getting a lot of people sick this year. Charlotte's too young to receive the vaccination herself, and getting any respiratory illness would be very serious for her. So, we'll be keeping her nice and quarantined at home for quite a while. I will happily exchange the hospital for our apartment, when she's ready.

October 26, 2009

Charlotte had her first negative swab for MRSA! She needs 3 consecutive negative swabs before she can be removed from contact isolation, and the swabs are taken weekly. So, if we're still in the hospital in 2 weeks, we might be able to touch and hold her without gown and glove.

Another exciting event, she stooled without assistance! Perhaps we can say goodbye to the glycerin. Also today the product used to fortify her milk changed from Human Milk Fortifier to NeoSure, a product less dense and one we can use at home. This should help her continue stooling on her own.

A speech therapist saw Charlotte today to explore why she has been struggling to take feeds by mouth. The therapist was very nice but didn't have any new tips/ideas - she needs to stay awake. At least we have been reassured she's not doing anything wrong and should catch on any day.

Last night at 10 p.m. the nurse recorded an episode of apnea that required stimulation (rubbing of the back/tummy). She needs to go at least 5 days without apnea before she can go home, but we already planned to be here for at least 5 more days. I just hope this was the last one. Especially since her doctor said the nurses on the 7th floor tend to provide stimulation too soon for episodes babies can resolve on their own, as opposed to NICU nurses who have more experience with apnic babies. She assured me that if additional episodes are recorded that seem suspicious they will have to have some "education" for the nurses. Before leaving the hospital tonight I asked the nurse to please please please not record an apnic episode unless she's sure that's what it really was.

October 25, 2009

Now it just becomes a waiting game. Charlotte is up to 4 lbs 7 oz and her feeds have been increased to 40mls every three hours, but she has taken a huge step backwards in feeding by bottle. Last week she had taken 30-40% of her milk by bottle. Yesterday it was 3% and that was a very difficult to coax out of her.

We've tried explaining to her that all she needs to do is eat and we can go home, but she can't be reasoned with.

Her second eye exam is Wednesday and hopefully the doctor will giver her a clean bill of health so more surgeries won't be necessary. After that we could go home pretty much anytime. So close and yet so far.

October 24, 2009

No big changes today. Charlotte's feeds are up to 40 mls x 3 hours and she now weighs 4 lbs 5 oz. She wasn't interested in eating much at all today, so the majority of her feeds were gavaged.

October 23, 2009

We got the call at 2 a.m. this morning that Charlotte was moving up to the 7th floor step-down unit.

There are good and bad aspects to it. On the bright side she is healthy and stable enough to move. But the moves are probably harder on us than on her; the readjustment to the new environment, new nurses, new protocols. For her it's probably just same youknowwhat, different day.

We had hoped that by being in our own room that contact isolation precautions would be dropped. No such luck. Now there is one nurse to three or four babies as opposed to one or two babies in the NICU. Whatever, we're ready to be done with all this.

The doctor made a few changes today based on the results of some labs. Her electrolytes are a little out of whack, most likely related to the diuretic she has been on the past week plus. The doctor also indicated that she would like to see Charlotte gaining more weight than she is. The diuretic was to help clear fluid from her lungs and now that they are taking her off it we're crossing our fingers that it does not adversely affect her breathing.

We're (Katie and I) concerned that she isn't pooping. It is very apparent that she is trying (red face, funny looks and sounds) but thus far she has been unsuccessful. It had been 48 hours since she last pooped with the aid of glycerin. She got another dose tonight and that got things working for the time being. The doctor emphasized this morning that she isn't as worried about the poop as she is about gaining weight and the electrolytes.

October 22, 2009

Charlotte wasn't too interested in the bottle today, and we had to gavage most of her feeds. She does continue to breathe well on room air and the doctors are not going to take her off the diuretic until next week - allowing her more time to grow and get stronger.

This afternoon I was pretty relaxed waiting for 7 p.m. because I knew then we'd have 24 hours of our two favorite nurses (shifts usually are 7-7). Then around 9 tonight we learned that Charlotte is next on the list to go upstairs (to the 7th floor step-down unit) and if they get the anticipated admissions, she'll be leaving the NICU. They talked about doing this a while back and I was very opposed because I knew she wasn't ready. This time I think she'll manage well, but I'm still not looking forward to another hospital room and all new nurses who we don't know and who don't know her.

I'd prefer our next move to be back to Houghton.

On a lighter note, I finished Charlotte's quilt today and am looking forward to tummy time at home. In time.

October 21, 2009

Charlotte has grown over 2 inches since she was born - she's now about 16 inches long.

Yesterday Charlotte weighed 1880 grams and 1 week ago she weighed 1890 grams. As a result of her overall weight loss, her feeds were increased to 38 mls x 3 hours. Then tonight she showed a weight gain of 35 grams!

She hasn't had a bowel movement on her own in a couple of weeks now. Yesterday the doctors and nurses decided not to give her glycerin every 24 hours to encourage her to go on her own. It hasn't worked yet, but they did finally give her glycerin this afternoon and she emptied out right away. Since they increased her feeds they won't be mixing a protein powder with her milk, which may help. Her milk continues to be fortified, however, and will be for quite a while.

We continue to work on her feeds and she continues to tell us when she's ready to take steps toward home.

October 20, 2009

Charlotte continues to breathe sans cannula! And, she wore her first pair of pants today. Quite stylish, really.

She has taken partial feeds by bottle for every feed over the last 24 hours, and once she took her entire feed. Things are looking up. She's even acting fussy! I love having an angry baby who wants something, but I'm not sure what...It's fun figuring it out and shows how much energy she has now!

I made her a fall hat today:

October 19, 2009

Gestational Age: 37 weeks
Age: 10 weeks
Weight: 4 lbs 2 oz

I had a great time at our baby shower - great people, fun games, good food, and very nice gifts, and I am so happy to be back with Charlotte.

She showed us today that she wants to go home and make use of her gifts! She did a great job taking bottles, no full feeds, but she took at least a couple mls at each feed.

In addition, she hit possibly one of her most exciting milestones yet: breathing without support! Late this morning she did her usual trick of pulling on her nasal cannula, but this time she would not let me put it back into her nose. Around 3 her nurse decided to take the cannula out and give her a shot. She did very well all afternoon with minimal desats and even taking bottles without support. It's a definite possibility that she'll go back on the cannula as she wasn't really weaned, she went straight from 2-liters on the high-flow cannula to independence. However, she looks much more comfortable with less tape on her face!

October 18, 2009

While mommy is away, Charlotte and daddy will play.

A much better day for Charlotte. All her vitals improved. She handled the weening to 3L with ease and started feeding by bottle again up to 28ml (out of 36) at 9:00.

Since she was so calm today she got a lot of holding time - probably 5-6 hours worth. She also set a record for no-desaturations at 4 hours! I remember a time when we were lucky to get 4 minutes.

Hopefully all this points to rapid improvement from Charlotte. Feeding and breathing are the keys right now. She is making progress on the feeds and the nurses think she'll be ready for the regular cannula shortly.

Her original due date was November 9 and were hoping to be home by then.

October 17, 2009

Charlotte did her best last night to make Nurse Kristen's shift interesting.  She continued her cycle of heart rate drops and O2 desaturations.  It's not unusual for preemies to brady a lot, but up until now it has been unusual for Charlotte and that is what is causing the concern. 

She has been showing improvement in her O2 tolerance. When I left tonight she was on room air at 4L of pressure and her desaturations that are not caused by bradys are much shallower than before (80-85% O2). 

As the day progressed her heart rate has become more stable and she has definitely gotten her feistiness back. Her 9:00 assessment was a handful. But afterwards she was wide awake and took her feed (by tube) with pleasure.  She seems to enjoy having her back rubbed since it seems to elicit a response that we're going to go ahead and call a smile, although it is more likely gas. 

Here is hoping she is over her little episode and her cannula pressure can be weened back. Then we can start working the bottle again. 

Mom is getting a little break this weekend (36 hours to be exact) as she headed back to MN for a baby shower. That means I get to improve my diaper changing and dressing skills (on Charlotte, not myself). I have yet to master the onesie routine, but I'm getting faster - at Charlotte's insistence. There is no greater motivator than pained screams.

October 16, 2009

One day post-op and Charlotte seems to be coming around

She came off the ventilator at 4:00 today and picked up right where she left off on the regular cannula (25% O2).

However she started to have some frequent episodes of extremely low heart rate and desaturation called brachycardia ("brady"). Prior to today her last brady was October 8 and overall she has had relatively few of them.

The doctors and nurses have discussed numerous possibilities ranging from infection to low hematocrit (red blood cells). After a blood gas analysis showed her hematocrit is increasing and her white blood cells are at a reasonable level it was decided that for now her instability is probably related to coming off of the anesthesia from the eye surgery and possibly post-op pain. Regardless, they will be watching her closely.

October 15, 2009

Charlotte took 22 mls at 7 a.m. and then wasn't allowed to eat anything for the rest of the day due to her surgery. Around 10 a.m. she started crying and fidgeting because she was hungry and it was hard to not just give her a bottle.

She was intubated at 11:30 a.m. and had her surgery from 12:30 - 3 p.m. Everything went well, but her poor little eyes are red and swollen from being held open for so long. We won't know for 2 weeks how successful they were, but hopefully this was it. She's still intubated and currently riding the vent (not attempting any breaths on her own), but her blood gas tests have been coming back fine so they'll continue to wean the vent to "force" her to breathe on her own again. As she wakes up she's showing some signs of discomfort, but the 3 different eye products should help her feel better.

October 14, 2009

I was a bit taken aback when I arrived at Charlotte's room today and saw a doctor and nurse looking over a baby in an isolette with a ventilator behind it. After verifying it was Charlotte's room I realized she was getting another eye exam, but was not actually on the ventilator. It scared me though! Her room is mighty crowded for the time being...photo below (she's wrapped up in the isolette).

I spoke with the eye doc and she moved Charlotte's surgery to tomorrow. This was a bit disappointing because the nurses had prepped Charlotte last night, and now I hope her IV line will still be good so she won't need to be poked again. The nurse who put in her IV did a very nice job - the result is much less bulky than the IV she had in Marquette, that IV included a spongy splint which kept her entire arm straight. Her IV is on her left hand in the picture below.

The surgery is scheduled for 12:30 p.m., and Charlotte will be intubated at about 11 a.m. so that she can be sedated. We expect her to be extubated sometime tomorrow afternoon, as soon as the drugs wear off. According to Charlotte's eye doc, 80% of laser surgeries for Retinopothy of Prematurity are successful the first time - the other 20% of patients require additional surgeries. Although, she has been performing laser surgeries for 6 years and has only had 2 babies who fell into that 20%, so she said her stats are much better than the national average. I guess that's promising!

I'm watching the news as I type this post and heard a disturbing, tragic statistic. Black babies in southeastern Wisconsin are 3.5 times more likely to die before their first birthday than white babies. Their rate of death is higher than babies in some third world countries. An organization is implementing radio messages to try to turn this around, but it will take more than just that. Sad.

October 13, 2009

Charlotte did pretty well today. She took a little milk by mouth, but mostly through her feeding tube. She slept, had a bath and made the monitors beep all day - nothing unusual.

The nasal cannula liter flow was again reduced, now down to 1.0 liters. Hopefully we're not moving to quickly - I say we're because the doctors seem to be asking my permission now pretty regularly. I know they're trying to make me feel involved in her care, but it's clear that her progress is up to her and even they don't know when the right time to reduce her support is.

Laser eye surgery tomorrow. No one can tell me how long it will take, they say babies have a tendency to drop their heart rate during the procedure, which slows down the surgery. Great. I hope Charlotte's goes quickly so she can get some rest afterward.

October 12, 2009

The liter flow on Charlotte's nasal cannula was reduced from 2 to 1.5 this morning and she managed well all day - a good sign. However, she did have a few abnormal bouts of desatting as low as 18. 

The opthamologist returned today for Charlotte's visit, instead of waiting until Friday as planned because he was a bit concerned. He did find that the Retinopathy of Prematurity is progressing and she will require laser surgery, tentatively scheduled for this Wednesday. 

October 11, 2009

No changes today. Charlotte took 22% of her feeds by mouth (pretty close to yesterday's 25%).

Since going on the diuretic a couple of days ago she has lost 120 grams, putting her at 4 lbs 0 oz, and she looks much better - breathing more easily, waking more frequently, and eating more by mouth.

October 10, 2009

September 10, 2009


October 10, 2009

Charlotte's 2 month birthday was momentous! She took 3 bottles - 20 mls at 9 a.m., 11 at 6 p.m., and a full feed (36 mls) at 9 p.m. This was the first time she took a full feed by bottle and its especially exciting because she had enough energy to do this after 2 bottles in the same day.

Patrick ran and I walked with another NICU mom Al's Run & Walk for Children's Hospital this morning. It was a very last minute decision as the other mom didn't have anyone to walk with (we'd considered it a while back but didn't want to be away from the hospital for an entire morning). It turned out to be a lot of fun. Patrick runs too fast to really enjoy it (he might disagree), but I took my time and saw a lot of people wearing t-shirts and carrying signs to honor/remember children who've been at Children's and many community groups/musicians providing entertainment along the course. We're hoping to bring Charlotte back for it next year!

October 9, 2009

Charlotte's doctor, Dr. Lagatta, recognized today that Charlotte has not made much progress in the past 1.5 weeks, so she decided to give her a little help ridding her lungs of fluid. Charlotte's will be given a diuretic twice daily to see if her breathing improves. Hopefully easing her breathing will give her more energy to eat on her own.

She's getting bigger, now 4 lbs 3 oz. She's still tiny, compared to full-term babies, but has grown a lot in the past month. The dietician says she's gaining weight as desired and will continue at this rate until she's 3 months old gestationally, so until about February.

October 8, 2009

Daddy's back! Yay! Charlotte woke up just for him.

Charlotte's hematocrit levels have increased on their own, meaning she will not be needing another blood transfusion. I was happy to hear her body is starting to do its job in regard to blood production.

She had a couple good goes at the bottle today and otherwise slept a lot.

October 7, 2009

The term of the day is: Projectile Poop.

Charlotte hadn't stooled in about 40 hours, so it was time to help her along. After some unsuccessful "rectal stimulation" (of which she was not a fan) she received a little shot of glycerin up her rectum. Shortly thereafter, the sounds of expulsion were heard throughout the hospital (ok, an exaggeration but the following is not). Once it was clear she'd filled her diaper I opened it to change her. That's when she really let loose and shot her poop beyond her bed. The nurse measured her poop splatter at a distance of 22 inches. Impressive, but there's more. After cleaning her up I discovered poop on the wall...6 feet from her bottom. Now, that's built up pressure. Today, for a brief moment, I was actually relieved to be wearing gloves and a gown over my clothes.

Otherwise, no big changes today. She took 10 mls by bottle at 6 p.m., had a "whale of a good time" in her whale-shaped bath tub, and maintained her temperature quite well.

October 6, 2009

Charlotte had a pretty normal day. She was transitioned from the high-flow nasal cannula at 2 liters to the regular nasal cannula at 2 liters. The only difference between the two is that the high-flow air is heated and the regular can be weaned to lower liter flows.

No way of knowing whether or not this is related to the loss of heated air, but she got pretty cold today - 36 degrees Celcius. After wrapping her in heated blankets she stayed warm for the rest of the day, but she was very sleepy. She took one bottle this morning (14 mls) before I got to the hospital and then she slept all day.

In response to the inquiries about Charlotte's hair color - it might be a little red. Her hair is darker than it turned out in yesterday's picture; we used to think she and I had the same hair color. We'll see as it gets longer and thicker!

October 5, 2009

Our 8 week old has been opening her eyes a lot wider lately and checking out her surroundings. I hope she doesn't like them and wants to go home, like I do!

She's gained even more weight and is now 3lbs 15 oz. Perhaps tomorrow will take us out of the 3 lb range. The doctors are pleased with her weight gain and have increased her feeds to 34 mls every three hours to keep up with her. She took all her feeds by tube today, but we'll keep trying oral feeds tomorrow.

No changes to her respiratory support.

She's maintaining her temperature very well and the isolette was removed from her room yesterday. Now she has what seems like a huge room for her little self.

Now that it's October, she's been sporting her festive Halloween hat:

October 4, 2009

Another week comes to a close.

Today we gave Charlotte a bath in the new tub we bought at Babies R Us. Up until today we had been washing her in a small little bin which, while completely adequate size-wise, made it difficult to hold her upright and wash her at the same time. Now her tub has a little seat so its easier to maneuver.

Her feeds are up to a full ounce (30 mls) every three hours (eight times per day). The doctors are looking for her to gain 10-30 grams (28 grams per ounce) per day so she has some work in front of her. She continues to work on feeding by bottle and nursing, but she is still primarily getting her milk through the feeding tube.

We're still waiting to see some improvement in her breathing. She hasn't shown much improvement, but we're hoping with the added weight she'll gain enough strength to start leveling out. It wold be great to see that supplemental O2 drop soon.

You may notice to the right of the blog are some new elements to our blog. We learned about the Lilypie tickers from Willow Jenson's blog (also linked to the right) and thought they would be fun visuals.

October 3, 2009

Fresh air!

After a brief return to the isolette last night, Charlotte was back out in the open by the time we returned to the room this morning.

Overnight she was transitioned back to the high-flow cannula, but the nurses have worked on weening the oxygen throughout the day.

Two days ago she took 2mls by bottle. Yesterday, 13mls. Today she bumped it up to 16mls. Slowly but surely she is get a hang of it.

She is also inching her way towards 4 lbs. Today she weighed in at 3lbs 12oz. According to the growth charts she is in the 3rd percentile, but her growth is following the curve as it should.

Yesterday she had her second eye exam and she showed some retinopathy, but it only appears to be the early stages. For now she'll just be monitored more frequently.

Last night we had dinner with the Vendlinskis and their 15 month old twins who have also been through the Marquette and Milwaukee NICUs. Its a good reminder that, yes, Charlotte will come home at some point and will be doing everything a full-term baby would do.

October 2, 2009

Charlotte has a new bed again! Her weekend nurse, Becky, thinks she's ready for an open air bed so that's what she has. We love being able to pick her up without pulling cords through the isolette and then squeezing her out through the side. Hopefully she can maintain her body heat and continue to gain weight, so she can stay in an open bed.

She's also back on the regular cannula at 1.5 liters. We're a little nervous about two big changes in one day and hope we're not putting too many demands on her at once.

October 1, 2009

Patrick returned to Milwaukee this evening and thinks Charlotte's head looks much bigger, a good sign.

We didn't try any bottles today, but the lactation nurse helped me try nursing twice. I wouldn't say we were overwhelmingly successful, but it went ok. All will come in time.

Charlotte did get a different bed. She's now residing in the pictured isolette. They reserve this isolette for babies who still need some heat control but who are more stable and can move in and out as it does not have the fancy raisable roof with radiating heat.