Wednesday, September 30, 2009
Her doctor said I could decide whether we left her at 2 liters or dropped the it down to 1.5 liters. I get to decide? Well, I decided not to rush her. We left her at 2 liters and will reevaluate tomorrow.
She weighed in at 3 lbs 7 oz this evening - a 2 lb weight gain since August 10.
Tuesday, September 29, 2009
Today was a big milestone day for Charlotte. She took her first bottle!
She drank 2 mls before showing stress signals and receiving the rest of her feed via her tube. Since this was her first feed and they anticipate choking/puking/heart and breathing issues/etc. the nurse gave her the bottle, however, she did wonderfully and had no issues. I'm sure it'll be a while yet before she can take full feeds and she will most likely take steps forward and back with this as well, but today was promising.
Monday, September 28, 2009
This morning Charlotte's nurse confirmed what I was worried about - that she wasn't ready to leave the NICU. The nurses felt that as soon as she desatted, as she's been doing, she would be sent back to the NICU.
It took until around noon when Charlotte decided to prove us right. She started working very hard to breathe and her skin was retracting from the effort. After upping her O2 and increasing the flow on her cannula without a change in her labored breathing, the nurse asked the doctors to take a look. Interestingly, the on-call resident and fellow thought her x-ray clearly showed pneumonia, however, the attending came up behind them as they explained this to me and commented on how great the x-ray looked. Hmmm...yay for multiple opinions.
Blood tests confirmed she does not have an infection (thank goodness), but that her red blood cells are lower than what they'd like to see. She may need another infusion, but the preference is that she start to make her own blood so we're going to see how she does tomorrow.
So, changes for today: Her feeds are up to 28 mls (one feed was skipped at 6 p.m. due to her labored breathing) and she's back on the high-flow cannula at 2.5 liters.
I'll try to take a couple pictures tomorrow to spruce up this blog...
Sunday, September 27, 2009
Dr. Wu informed us today that Charlotte is on her list of babies who are the least sick and can be transferred upstairs when space is needed in the NICU. I guess this is good news, but Patrick said it well: "In our mind, either she's sick and needs the NICU or she's not and can go home." But, we may have to deal with this gray area in the coming days. Upstairs is an inpatient infant unit where the NICU has a section reserved for transitional babies - a sort of step-down unit.
Dr. Wu's rotation ended today and tomorrow we'll meet Charlotte's new doctor. Dr. Wu be back in November and said something about seeing us when she returns...I hope she doesn't. I'd like to be home before then.
Saturday, September 26, 2009
The doctors don't feel she's at high risk of getting sick from MRSA. The bacteria has colonized on her skin, but she doesn't have a true infection. They say 20% of the general population carried MRSA on their skin at any given time, she was just lucky enough to be tested.
She's up to 3 lbs 3 oz now and her feeds were increased 1 ml today to 27 mls every 3 hours.
Friday, September 25, 2009
The baby in the unit next to us has a been battling numerous complications, one of which is a particularly nasty staph infection. All the babies in our pod were swabbed and Charlotte was the only one to come back positive.
MRSA (methylene resistant staph aureus) is what we're dealing with and it will make life in the NICU complicated for the remainder of the stay. They key item in the name is "resistant". MRSA is commonly referred to as a "super-bug" as it has adapted as it has been treated over the years and is now multi-drug resistant.
Since Charlotte is doing relatively well at the moment Dr. Wu is holding off on treatment. MRSA is a common staph, with upwards of 30% of the general population carrying it. The treatment at this point (vancomycin) might do more harm than good. Hopefully tomorrow we can get more specific with Dr. Wu for what this means long term.
But Charlotte is now in contact isolation for the rest of her time here. That means gowns and gloves and extra washing. We can still hold her but its a little different while wearing gloves.
All her tangible vital statistics remain unchanged so we remain hopeful as well.
Charlotte remains on the high-flow cannula with her O2 at 30%. She seems to be comfortable in that range.
And she is now officially 3 lbs. She is almost big enough (1500grams/3lbs5oz) to leave the isolette for a real crib.
Wednesday, September 23, 2009
An exciting milestone - she has officially doubled her birth weight and now weighs 2 lbs 14 oz. So close to 3 lbs!
Tuesday, September 22, 2009
I got to give Charlotte a bath today, and since she is IV-line and umbilical stump free, she got a real bath for the first time (not a sponge bath). She seemed to enjoy sitting in the water a bit more than having water rubbed/dripped onto her. She only got upset when the nurse attempted to move her nasal cannula tube away from her ear and pinched her skin - poor girl.
We got a nice reminder today of the risk of infections. A baby in our pod has tested positive for a bacterial Staph infection and so all the babies in the pod are being tested. Charlotte's been doing well so I am fairly confident she hasn't caught it. We should get her results back in the next few days.
Monday, September 21, 2009
Sunday, September 20, 2009
Charlotte would like everyone to know she is doing A-okay (see photo above).
No changes - which is a good thing! Her umbilical cord stump finally fell off last night so her belly button looks a bit more normal.
Saturday, September 19, 2009
Patrick and I took in our first Milwaukee Brewers game at Miller Park with Grandma and Grandpa Distad and Heather, Mark and Nicholas Flashinski. We left at the 7th inning but they were well on their way to winning! We're looking forward to attending Twins games at an outdoor stadium...even if there won't be a retractable roof and it's next door to a trash burner.
Friday, September 18, 2009
Children's Hospital continues to be very good to Charlotte.
Today she was moved off the CPAP to a high-pressure nasal cannula. Earlier in the week she didn't do so well on the regular cannula, which prompted the move back to the CPAP. But this time around we're hoping she can adjust. The next step is most likely no breathing devices which, while inevitable, sounds scary.
Charlotte was up to 2lbs 12oz today and is doing much better at maintaining her body temperature this time around. With the increase in weight, her feeds are on the way up to 26 mls by tomorrow. She is most definitely in her "feeder" stage.
The days in the NICU still seem to go by quickly, but they are definitely less stressful.
One of Charlotte's "pod-mates" went home today. That day will be here before we know it.
Thursday, September 17, 2009
Dr. Wu told us today she's proud of how Charlotte's doing, which we take to be a good sign. Charlotte's still on the CPAP and probably will be at least through the weekend. We're glad they're not rushing her back onto the cannula - she needs time to build some muscles. With time her pliable chest walls will become stronger and her lungs will increase in pliability, increasing the strength of her breathing.
Wednesday, September 16, 2009
Patrick's back, so that's good!
Tuesday, September 15, 2009
She hasn't been gaining weight lately and is down 1 oz to 2 lbs 6 oz, but did gain 20 grams yesterday.
Quite a few desats today, as low as 44, but then she jumps right up to 97. I can't wait for her stats to level out.
I got to give her a bath and dress her all by myself today - no nurse supervision. I'm getting pretty good at working around cords and tubes.
Her blankets and dress are dirty so I have a start to her first load of dirty laundry. I'm so excited I don't think I'll ever be sick of washing her little clothes.
Monday, September 14, 2009
Sunday, September 13, 2009
The pressure on her CPAP was dropped from 5 to 4 today and she's doing quite well. If she has a good night they may move her to a high-flow nasal cannula tomorrow. This would mean we could see her head and face again, so I'm hopeful.
Otherwise everything stayed the same today! Patrick and his parents headed out this afternoon after brunch at his Uncle Jim and Aunt Margaret's home. Charlotte and I are looking forward to Wednesday night when Patrick returns to Milwaukee.
Saturday, September 12, 2009
Today was almost too good to be true for Charlotte. As you can see from the photo, she's now sporting clothes! Her nurse said she is at the appropriate age for such things. Patrick and I got to give her a bath this afternoon and then dress her. Dressing a baby with sensors and wires attached to her chest is a bit complicated, but we got it done.
Now that she's wearing clothes they've made an adjustment to her temperature monitor. Until today the isolette responded to her skin temperature, keeping it around 37 degrees Celcius. Now, the isolette is controlling the air around her, keeping it at about 28.8 degrees Celsius. The nurses will monitor how well she's able to maintain her body temperature, and gradually lower the temperature control settings. Her clothes and blanked wrapped burrito-style should help.
She is officially on full-feeds, meaning she is being fed 20 mls of fortified breast milk every 3 hours. This allowed the nurses to remove her PICC line and the associated huge piece of plastic attached to her lower right leg since her first 24 hours of life. She is now intraveneous line free...hopefully for good.
Her CPAP settings were lowered to a pressure of 5 today, and the nurse anticipated she would transition to the nasal cannula if she could manage this low pressure setting for a couple of days.
So much happened today, I don't want to push her, but I hope she continues to thrive.
Friday, September 11, 2009
Her feeds stayed at 16 mls today, but the milk is now being fortified. Premies need extra protein, so the nurses add a powder to fortify the milk, making it denser. If she continues to digest the fortified milk her feeds will be increased tomorrow.
Her first eye exam was normal today, nothing remarkable. Her next exam will be in 3 weeks.
Patrick got to hold her for a little while today but she was a bit sensitive and didn't want to be touched. Hopefully she gets some good rest and feels better tomorrow.
Thursday was another good day for Charlotte.
Her feedings are up to 16 mls every three hours. For her weight, a full feeding is 20 mls so she is getting close. She also had her first "real" poop. Up until now she has been pumping out merconium.
She gained back the 50 grams she lost Wednesday so she is back up to 2lbs 7oz.
Brain ultrasound still looks good and her lung x-rays are improving.
Yesterday both Katie and I got to hold her for awhile. She fidgets a little more when we hold her now. But the neatest thing is that she is now strong enough to adjust her head on her own. She does it in a couple movements. First she lifts her head from whatever direction it is facing and props up on her chin. She rests there for a little bit and then makes her move to face the other direction.
Today Charlotte will have her first eye exam. Katie was advised that it wasn't best to be in the room during the exam. It isn't painful for Charlotte, but she definitely won't like it and it would just be stressful for us to see her squirming.
It seems weird to say, but it's good to be back at the hospital.
Wednesday, September 9, 2009
She still isn't quite comfortable on the CPAP but she made it through the day. Her x-ray this morning wasn't what the doctors wanted to see so they increased the pressure from 6 to 7 to open her lungs and gave her a diuretic to drain the fluid - it worked, the afternoon x-ray looked quite a bit better.
I got to hold her twice today, for the first time! It almost felt like I could hold her whenever I wanted.
Tuesday, September 8, 2009
She appears to be struggling on the CPAP, but this could mean she needs some time to adjust or that she's not quite ready. Only time will tell - Vitamin T according to Dr. Wu.
Charlotte's feedings went up to 10 mls every 3 hours today. She isn't yet able to digest all of it in 3 hours, so she more or less received 10 mls every 6 hours. Again, she's in need of some Vitamin T.
Monday, September 7, 2009
Another good day. Her feedings increased to 7 mls every 3 hours (I learned today there are 30 mls in an ounce). This afternoon brought her best blood/gas yet allowing the doctors to reduce the number of times per minute the ventilator breathes for her from 25 times to 20. As long as she does well tonight, she should be off the ventilator tomorrow and back onto the CPAP.
While a move to the CPAP doesn't mean we're done with the ventilator for good (which we know all to well), today's nurse felt pretty confident that she'll do very well on the CPAP. I hope she's correct!
Interesting tid bit of the day: breast milk from mothers of premies carries antibodies and special nutrients for the first month. Since Charlotte wasn't eating until this week Patrick had brought a cooler full of milk from Marquette to Houghton for storage, but now the lactation nurse in Milwaukee requested he bring it here because it's all from the first month. What a great dad, transporting milk all over Michigan and Wisconsin to feed his baby girl. :)
Sunday, September 6, 2009
All things considered, we couldn't have asked for a better day. Charlotte spent most of the afternoon breathing room air through the ventilator and her vent settings are being reduced gradually. By tomorrow afternoon she should be completely weaned from the nitric oxide. Out of nowhere she's started eating like there's no tomorrow - 4 mls every 3 hours!
Yesterday I was able to hold her for 3 hours! Patrick enjoyed holding her today for an hour until nature called and he had to give her up. We love being able to hold her as much as possible and now the nurses say it relaxes her - whereas previously it would stress her out. As she continues to get older she should enjoy it more and more.
While visitors to the NICU continue to be limited to parents and grandparents we enjoyed chatting with Patrick's Uncle Jim and Aunt Margaret this afternoon. We also got to have dinner with Andy and Robin who first took in the 11+ inning Brewer's game...kudos to them for surviving that!
4 weeks old tomorrow!
Saturday, September 5, 2009
When she was doing well previously the ventilator oxygen level would be supplying as low as 21%, the same as room air. This week they were keeping it above 80% constantly and even at 100% she wasn't responding very well.
This all culminated with an episode late Wednesday afternoon when she was fighting the ventilator. Her respiration got so bad she started to turn blue and the nurses had to manually "bag" her to stabilize her.
Dr. Frei had been in contact with doctor's at Children's Hospital of Wisconsin in Milwaukee during the day and it was at this point, with her stable, that the decision was made to transport her to Milwaukee that evening.
On a positive note, from the night she was born to this decision to transport her, we have found that when a decision is made things start happening very quickly. Everybody involved is a pro.
The jet from Milwaukee arrived in Marquette around 9:45 and the team was at the hospital shortly after 10:00. From there everything ran very similar to the night she was born, only this time she traded four wheels for some wings.
I had left earlier in the evening to pack our things at Beacon house, gas up the car and purchase much caffeine for the drive. Around 11:00 p.m. EST she was stable in the transport isolette and was on her way. We followed them out and hopped in the car for the drive to Milwaukee.
We were blessed with a bright moon and no deer as we drove down through Escanaba, Marinette and Green Bay. I started to fade a little around Sheboygan, but we pressed on and pulled into Children's around 3:30 a.m. CST/4:30 EST. Charlotte had beat us by a good three hours and was resting.
Children's Hospital is operating on whole other level from Marquette General. Instead of one big NICU open space, there are pods of 5-6 rooms. Right now there are approximately 40 infants here. The hospital itself is enormous and we've managed to get lost more than once.
Once they briefed us on everything we were able to sleep for three or four hours in a room just upstairs from Charlotte's level. Then during the day we lucked out in securing one of the long-term stay rooms at the Ronald McDonald House directly across the road from the hospital.
The RMH is just as amazing as the hospital. Our "room" really is more of a suite and - drum roll - we have TV. Cable TV. The quiet and solitude of Beacon House was nice most of the time, but there were days, particularly stressful days, when watching stupid t.v. was sorely needed to zone out for a bit.
So after getting over the initial panic and fear when we found out she was being transported, we're comforted a bit by the knowledge that she is in the best place she could possibly be right now. If there is anything to be done for her they can do it here.
Not much has changed with her condition here yet. For now they are assessing her status and mostly continuing the level of treatment she was getting in Marquette.
They do think that much of her recent difficulty is related to pulmonary hypertension. The blood vessels in her lungs were constricted, causing weak blood flow. She is receiving nitric oxide now and that seems to have helped a little. She is still very weak and a relying on the ventilator completely, but she continues to put on weight, 2lbs 2 ounces yesterday. And she has a bow in her hair.
Kathy and Dennis, who happened to be on their way to Marquette for a visit when we called, arrived here shortly after Charlotte and are staying through the weekend.
Katie's joke is that we forgot to tell Charlotte that my graduate courses through UW-Milwaukee are online. She did choose my first day of "class" to move.
Wednesday, September 2, 2009
Dr. Frei has decided that Charlotte needs a higher level of care than can be provided in Marquette, so a helicopter from Milwaukee Children's will be picking her up at 9:45 p.m.
It may be a day or two before we're able to post another update.
Please keep Charlotte in your thoughts and prayers.
Tuesday, September 1, 2009
A good day followed by a rough evening.
This morning's visit with the doctor brought pretty good news for Charlotte. All of her tests were where they should be, her x-ray wasn't looking any worse, she was taken off of all 3 antibiotics, and since she had pooped 4 times on her own in the past 2 days it was time to try feeding her another 1 ml of milk.
Then, the evening rolled around and she started desating almost constantly and thrashing around as if she was very unhappy. Her blood gas results were not what the doctor wanted to see and so the ventilator settings were turned up so that she would receive additional support. This is not the direction we like to see her going, but after the adjustments she was able to rest more comfortably.
Her feedings were short lived, being cut off this evening after things didn't look quite right when the nurse pulled back on her feeding tube. Dr. Frei and the nurses are all very nice and assured me that she will improve, but that the lungs and the stomach are tough obstacles.
So, my baby can't breathe or eat...this sounds like a problem to me.
On a positive note, she was back up to 2 lbs today - 900 grams exactly!
Thank you to everyone who takes the time to read our updates. We appreciate your support!