Camryn was born 13 weeks premature on 02/24/99, at 2 lbs. 2 3/4 oz.  The following is a record of her condition since her birth.

Update 06/17/00:  Camryn is now nearly 16 months old!  She had a great birthday on 02/24/00, and is now about 19 lbs.  She is a very happy, healthy baby.  She is still small and taking her time to develop, but is quite well.  She is crawling, rolling, chatting, interactive, and even knows how to do "so big", patty cake, hold the phone, and give Mommy or Daddy a kiss!  We have to treat her more like a 10 month old instead of 16 month old.  Even though one normally adjusts premie babies by subtracting their prematurity months by the age, Camryn is even different since she spent a total of 5 months in the hospital.

Update 02/07/00:  Camryn was released from St. Luke's hospital today, Monday February 7th.  She had the IV removed overnight and was breathing much easier as compared to Saturday.  Thanks be to God that it was only two days.  We, above anyone else, can handle just two days.  We immediately got into our shift routine and Corinne spent the two nights at the hospital.  Once she got home, Camryn really enjoyed her Exersaucer!  She's eating well also.

Update 02/06/00:  Camryn was admitted to St. Luke's hospital yesterday (Saturday, February 5th) as she was diagnosed with having the RSV lung virus.  Respiratory Syncytial Virus  a lower respiratory tract infection.  This a common virus in children, affecting their lungs.  It can hospitalize them because they need oxygen / breathing assistance.   Adults get it as well, but may not have any symptoms.  You may recall that she actually had RSV when she was 10 days old, back in early March, 1999.  That RSV episode led to her being on the ventilator for 5 - 6 weeks and staying in the hospital for 5 months.

She started coming down with cold like symptoms on Wednesday.  She was coughing, lots of discharge from her nose, and would start gagging and throwing up due to her coughing.  She also had a wet sounding, or slight wheezing sound when she breathes.  We took her to the pediatrician Saturday morning and was quickly admitted to the hospital.  She's doing pretty well, as she still has her happy self sometimes when she's breathing easily.

She has breathing treatments every 3 - 4 hours to help clear her lungs.  She also had an IV put in to help her general fluid intake.  The pediatrician saw her this morning and said that she recommends to have her stay over at least one more night as her lungs are still a little "raspy."

Update 01/03/00:  Camryn had a great Christmas season.  She has stayed healthy and was able to visit both of her parent's families.  She is now ten and a half months old (seven and a half adjusted to her due date) and doing quite well.  We're working to get her to roll over and sit up, and is close to doing both.

Update 12/21/99:  Camryn has certainly found her voice, as she loves to squawk and squawk and squeal.  Not because she's upset, but simply because she likes to make noise!  It's quite funny!  She had a doctor visit a few weeks ago for her Synagis shot (RSV vaccination she gets monthly), and she weighed 14 lbs. 10 oz.  She should be 15 lbs. by now.  The RSV vaccination is a monthly shot that costs $1,600 per shot!!!  Thanks again to that insurance.  She started this vaccination in October and will continue to get it each month through April.

Update 11/27/99:  Camryn continues to do astonishingly well.  We're so happy!  She's really munching down the baby food, now three times per day.  In the last month she started waking up once and twice a night.  We figured out she wasn't getting enough food during the day.  So once we started feeding her a little more and more often, she's back to sleeping through the night.  She'll be having her 9 month checkup on this coming Monday, 11/29/99.  She should be near the 14 - 15 lb mark.  She had her booster flu shot last week.

Camryn's Baptism celebration was held on Saturday, November 13th, at All Saints Catholic Church in Cedar Rapids.  We had our two families attend, all the way from the Chicago area and western Iowa.  It was a celebration, not an actual baptism, as Camryn was actually baptized just a few minutes after her birth.  Now was the time to welcome Camryn into the Catholic faith with our families.

AND. . .  We're famous!  In addition to the Cedar Rapids newspaper article on Camryn's homecoming back in August, Camryn's story is now being told in a radio advertisement for St. Luke's Hospital.  Back in October, a film crew came to our house to film our family, have Corinne tell the story, and take pictures.  The end result is Corinne telling the story on the radio, and we also appear in St. Luke's Healthcare Foundation video.  The promotions are to raise money for the new St. Luke's Women's Health Center (maternity, birthing, and NICU).  The radio spot is getting aired on several Cedar Rapids stations at least every hour.  We may even someday appear on a billboard advertisement.  To see the newspaper article and to listen to the radio advertisement, press the link to the left.  Hopefully within a few weeks I will have the video also.

Update 10/30/99:  Camryn is doing very, very well.  Her latest accomplishments include eating baby food / cereal, reaching for things to touch and play with, and getting close to 14 lbs.  I have new pictures included in the link at the left.  She's stayed quite healthy, knock on wood.  She had a flu shot a few weeks ago, and will get an RSV vaccination shot this coming Tuesday.

I apologize for not updating this site for about 6 weeks.  I had traveled for 4 weeks straight to places like Las Vegas, Chicago, Seattle, and San Francisco.  The time away meant the time at home was more special - not giving me a lot of time on the computer!

Update 09/10/99:  Camryn is doing well.  She is starting to "giggle" when you tickle her legs!  She is really interacting more and more.  She had a check up with the urologist on Wednesday 09/08/99.  She is doing fine, but will just need to be monitored for urinary tract infections.  Watch for new pictures in the next few days.

Update 08/25/99:  Camryn had her six month checkup today.  Can you believe it's already been six months?  She weighs 5,130 grams (11lbs. 5oz.).  This puts her in the 5th percentile for weight compared to other six month old babies, and about 25 - 50% for the adjusted 3 month old baby.  She is 22 inches long (56cm), which puts her in the 5th percentile again for 6 month old babies and 10-25% for the adjusted 3 month old babies.  She also had two immunization shots today.

She's been eating very well the last few days, almost doubling her daily intake the previous several weeks.  She's routinely taking 4oz. bottles every 3-4 hours now.  Great news, so the new medicine, propulsid, must be having some affect.  We also dropped her calorie intake from 30 calories per ounce of milk to 24 calories per ounce.  We're only adding one scoop of formula to each 7oz. of milk instead of two scoops.

We're still concerned about her vaginal infection that she's apparently had since 08/11/99.  She's still having some discharge in each diaper.  We had to schedule an appointment with her urologist in early September, a month before we thought we would bring her in.  

Update 08/21/99, 9am:  Camryn's infection has cleared up for the most part.  Last weekend she didn't eat very well again, so it was a pattern of about 3 straight weekends she wasn't eating well.  She would get hungry every 3 - 4 hours and would take the bottle vigorously at first.  But as soon as she first swallowed, the "acid reflux" hurt her and she would cry and refuse the bottle.   We talked to the doctor on Monday of last week and she added another medication for the reflux, called propulsid, which restricts the valve from the tummy to the esophagus and lets the tummy force the milk to the intestines faster, reducing the reflux.  She's still taking Zantac as well, controlling the acidity in her esophagus.  Since we started the propulsid, she's been doing pretty well, commonly finishing her bottles.  We have a 6 month checkup next week so we'll know then how much she weighs.  She sleeps well through the nights, usually from 9 or 10pm until 4-6am.  She's a happy little girl, coo'ing and smiling.

Update 08/11/99, 9pm:  Camryn now weighs 4,820 grams (10 lbs. 10oz.).  She has been doing fairly well lately.  She had some more problems feeding on Sunday, 08/08/99.  Sunday evening she had a mild temp of 100.2 F.  She did fine on Monday and Tuesday she was feeding very well.  She had some green mucus discharge in her diapers.  She then had a 102 degree temp last night (Tuesday).  Tylenol took care of it and controlled it.  We took her to the doctor this morning and she had a vaginal infection.  She'll have some Lotriman cream to help this.  

Update 08/05/99, 9pm:  Camryn's joyous homecoming was featured in the Cedar Rapids Gazette (newspaper) today!  The Gazette had a section on our Blake Boulevard neighborhood, and included an article and two pictures on Camryn's homecoming.  It is also published on-line.  See the web-link on the left (Press / Newspapers) to see the pictures that were in the paper. 

Update 08/03/99, 9am:  Camryn's been doing better since Saturday 07/31/99.  She ended up not taking any bottle from 5am to 12midnight!  We were getting concerned to say the least.  We called the pediatrician at 5pm after 12 hours of no bottles.  The doctor said she wasn't concerned about dehydration yet since Camryn didn't have diarrhea nor vomiting.  She said a babies first instinct is to eat, so she was confident that Camryn would take some milk soon.  We held out until she finally took some at midnight.  She's been doing very well since then, actually taking more milk yesterday than she's ever had at home.

Update 07/31/99, 3pm:  Camryn's been a little stinker that last day or so. She has a condition called acid reflux in her tummy. She has to take Zantac to control the acid backup in her esophagus. She has been gaining weight well, but yesterday she went from 2pm until 10pm without eating any of her bottles. Then she ate at 10pm, 1am, and 5am ok. But as of now, 2:20pm, she hasn't taken anything for over 9 hours since 5am. She sometimes starts to take the bottle ok, but as soon as she swallows it seems to hurt her and she goes into violent cries. Poor little one. If she doesn't take anything until 5 or 6 this afternoon, we'll call the doctor. Don't want her to get dehydrated.

She's able to be comforted and stop crying, can sleep ok, and can suck on her pacifier ok.  But as soon as we give her the bottle and she takes that first swallow, it's over.

Update 07/30/99, 7pm:  Camryn had a visiting nurse appointment today at home.  They come twice a week.  She weighed in at 4,763 grams (10lbs. 8oz.)!  She gained a full 7 ounces in 5 days.  She has also gained 1lb. 4oz. since she was released from the hospital two weeks ago.  The nurse suggested that the doctor may choose to have her only take mommy's milk alone without the additional formula.  She continues to do well overall, like a standard baby.  She has great, quiet times coo'ing and ahhhing, kicking and waving her arms & legs.  She also has her crabby times too.  She does sleep up to 5 hours during the night.  

Grandma Miller came today to help out as Corinne went to Chicago this morning to attend her grandmother's wake and funeral.  Corinne should be back Saturday.  Even though we can't be there, we wish the Shannon family back in Chicago all the best in these hard times.  She was the staple of the family.  She meant a lot to Corinne as she roomed with "Granny" for over two years while Corinne attended Northwestern.  We were fortunate over the last year to spend quality time with her as we visited Corinne's parents.  She and Colette got along great!

Update 07/24/99, 3pm:  See a new picture of Camryn in the Camryn pictures to the left.  Camryn did very well after her doctor's visit on Thursday.  She seemed to respond to the shot immediately.  She did well on her bottles and rested well.  We had a follow up visit on Friday afternoon, when she had a second antibiotic shot.  There were no growths in the urine nor blood cultures by that time.  We're staying at home today, roasting in the 95 degree temps.  We're enjoying our little backyard pool again today.  Corinne has been taking the girls out for morning walks to the park.  We stopped for a visit yesterday afternoon to the hospital to say hi to the NICU staff.  For the Cedar Rapids people, look for Camryn's picture in the Milestones section of the Cedar Rapids Gazette on Sunday, August 1st.  Also look for our pictures of Camryn's homecoming in the Cedar Rapids Gazette on Thursday, August 5th.  Two Gazette reporters met us at home when we arrived from the hospital.  They are doing a section on August 5th about our street / neighborhood and will include pictures of Camryn's homecoming.

Update 07/22/99, 3pm:  Camryn now weighs 4,450 grams (9lbs. 13oz.).  She had a nurse visit on Tuesday, part of the twice weekly nursing visits for the next few weeks to keep track of Camryn.  She did very well yesterday, sleeping well and feeding very well.  But... last night was a different story.

Camryn was up at 1am for a feeding, took about 1/2 of a bottle (45 ml), then was quite unsettled and couldn't get rested until 3:30am.  Daddy tried everything, but poor little Camryn kept crying at the slightest movement.  She seemed to have some bad reflux going on, and she threw up some small amounts of milk twice as well.  She woke up again at about 4:30am, seemingly hungry but didn't take anything from a bottle.  She woke up again at 7am and had a 100.1 degree fever.  She did take another 50 ml from a bottle, so that was promising.  We took her to the doctor this morning.  They ran her through the tests...  checked her temp anally, checked her ears, lungs, heart, and mouth.  Her temp was 99 degrees at the doctors office.  Everything seemed normal so far.  No ear infection, no sign of a cold, flu, or pneumonia.

Remembering Camryn's kidney condition (see 5/11/99 update for more info), the pediatrician wanted to be safe and ordered some tests to look for a urinary tract infection.  This meant some blood drawn through an IV, and a test of her urine.  The urine had to be drawn from a catheter in her bladder.  The nurse had the same problems as the NICU nurses and neonatologist had, she couldn't get the catheter in after a few attempts.  The pediatrician was coming into the room to try herself, when Camryn started to urinate, and Corinne and I caught some in a specimen container.  Her bottom was cleaned thoroughly, so they took this sample as sterile for the test.  Whew, didn't need to try to get that catheter in again.

The test results showed no sign of infection in her bloodstream.  That's good.  But... there were signs of infection in her urine.  A urinary tract infection is the diagnosis.  She ordered an antibiotic shot and will have us return tomorrow afternoon for possibly another shot and/or another urine test.  If things get worse, she could be hospitalized again.  This would be if she can't hold any milk down, continues a high temp, and/or refuses to eat.

We're glad we caught this early and hopefully will nip it right away before it becomes a problem.  However, this is a sign that her kidney duplication / abnormality may prove that she will have continued infections.  This could lead them to advise for surgery to remove the duplicated part.  This would probably be months away...  She's resting fine and taking a nap with mommy on the couch right now.  She did take another 50 ml from her bottle this afternoon.

Update 07/19/99, 11am:  Camryn is HOME!  She was discharged on Thursday, 07/15/99.  We have been enjoying the last several days having her home and taking it easy.  She now weighs about 4,367 grams, (9 lbs. 10oz.), weighing about 9lbs. 4oz. when she was discharged on 7/15/99!  Sorry that I haven't updated this web-page lately, I upgraded to Windows 98 on 06/30/99 and my modem wasn't working until 07/16/99.  Ugly, and I won't upgrade again!

Daddy had a terrific "Welcome Home" surprise for Camryn and Mommy.  See the pictures link to the left.  Camryn spent a total of 142 days in the hospital!  Who would have thought that we'd take her home in 95 degree heat when she was born in February with snow on the ground?  She's home and doing well.

She is "tube and wire free" with no nasal cannula (oxygen), no NG feeding tube, and no monitors!  She is coo'ing, smiling, and interacting with people.  She's very active when she's awake.  She is so much like a standard little baby!

Here's a recap of the homecoming events.  We were told on Wednesday, July 14th, that she could be released on Thursday, July 15th.  Daddy sprang into action to plan the surprise welcome home.  Early on Thursday morning, a balloon company came at 7am to build a pink and purple balloon arch over the driveway.  By 9am, we had 5 families of friends with kids come over to help put up 100 more balloons in the front lawn and plaster the entire driveway with colorful sidewalk chalk.  We also had signs, streamers, and a big painted stork announcing her homecoming.  We have the entire set of pictures of her homecoming linked to the left, and also a set of just the highlights.

Since early July, Camryn has continued to do pretty well on her feedings and continues to gaining weight well.  She is in the 55 - 60% in weight for her gestational age.  Right on target.  She has had some issues with taking smaller feedings at times, but overall does ok with the weight gain.  During the Fourth of July holiday, Corinne spent Friday afternoon through Sunday evening in Chicago to attend her brother's wedding.  Obviously, that meant only the bottle for that time period.  She did pretty well on just the bottle, but hasn't gone back to nursing.  We knew this could happen, but just wanted her to be feeding well enough, even if only on the bottle.  Camryn showed some signs of acid reflux (heartburn) as she would take a bottle well at first, but after the first burp or pause will reject the bottle.  She had a test performed for 20 hours from 07/09 - 07/10.  She had many wires and a tube down her throat with a big computer and monitor.  It did show some abnormalities, so she is on Zantac for the acid reflux.  It hasn't shown a great improvement, however, as she still tends to reject the bottle after the first burp.

After some time of supplementing her bottle feeding with NG tube feeding, we suggested to the doctors/nurses to let her be a regular baby and take what she needs and not force it into her.  We had been in a mode to let her take a bottle, but then pump the remaining portion of the bottle.  The portions were set by a dietician for an amount to cover a 12 hour nursing shift.  We thought she wasn't getting the chance to get hungry and feel the need to take what she needs.

And surprise, surprise, her oxygen supplement was removed on Friday, 07/09, as she was only requiring .2 liters per minute (flow) and 24%.  Standard room oxygen levels is 21%.  She never had any issues without oxygen, so we've been able to get her home even WITHOUT any oxygen tanks!  Also, since she's not on oxygen, she doesn't even need apnea monitors!  She's tube and wire free!

The tests on her kidney's performed on 06/29 and 06/30 showed no sign of immediate concern and no intervention is required at this time.  As the update on 06/29 states, it was difficult to get the catheter into her bottom.  Early in the morning on 06/30, the urologist was able to get the catheter into her rather easily.  Whew!  The test performed showed no reflux from her bladder to the ureter and kidneys.

Grandma & Grandpa Miller visited this last weekend, and it was nice for them to enjoy their 2nd grandchild!  We had a stop at Panera (bread place) for lunch on Saturday by request of Grandma Sue.  Colette enjoyed her little pool outside.

We have been thoroughly enjoying the time with Camryn at home.  We certainly don't miss the multiple daily trips to the hospital.  Daddy is taking 2 1/2 week vacation and won't return until Wednesday, August 4th.  No specific plans, just relax, have fun, do some major biking, and work out.  We plan to continue to take Colette to school 4 days per week through August.  By that time, we should be adjusted well enough to possible only take Colette to school 2 days per week.  We don't want to remove her entirely from school as she does so VERY WELL there.

We'll continue to post updates on Camryn a few times per week.  We have posted the new developmental care plans and the discharge feeding instructions under the "Developmental Care" link to the left.

We'd like to thank the staff at St. Lukes hospital for taking such good care of her.  We'd also like to thank our friends and family who have offered so much love and prayers for us.  Special thanks to the friends who helped prepare the welcome home surprise on Thursday morning with less than 24 hour notice!  And lastly, we'd like to thank the Lord for his wonderful gift.

Update 06/29/99, 6pm:  Day 126!!!  Camryn weighed in last night at 3,880 grams, (8 lbs. 9oz.)!  She continues to gain weight very well.  She had been nursing quite well last week, and was starting to take bottles twice per day so they can add more calories to her diet.  She started to take full feedings from the bottle on Sunday, Monday, and today, but was not doing quite so well nursing those days.  She did better this afternoon nursing for 30 minutes, getting a full feeding.  We're still hoping that we can get her home early next week!

Camryn had her initial test on her kidneys yesterday.  I forget the name of the test, but they injected a radioactive dye into her bloodstream through an IV in her left hand.  She was laid on imaging "camera" for 40 minutes as they took images of her body to see the dye move through her bloodstream to her kidneys and bladder.  The test proved that the left kidney was functioning pretty well, but didn't drain the dye quite as fast as the right kidney.  This test went fine for Camryn, as she slept pretty well during the whole 40 minute period.

Today they were intending to do a test by injecting a dye into her bladder and see if there was any reflux, or urine going back from her bladder to the kidney.  Basically, this was testing the valve between the ureter and the bladder.  They had to put a catheter (tube) into her through her bottom directly into the bladder.  Two nurses tried this morning for about a half hour but couldn't get the catheter into her.  They waited for the neonatologist to arrive.  He got there about 1pm and tried himself, but also was not successful.  It was pretty traumatic for Camryn, as she struggled and cried furiously.  It was hard to take for Mommy and Daddy, but we were there the whole time to hold her down and comfort her.  The action plan now is unknown, but the urologist that ordered the tests may try himself this afternoon or tomorrow morning.  If that doesn't work, they'll have to evaluate how critical the test is, and possible do some other course of action.

Update 06/28/99, 7am:  Camryn weighed in last night at 3,750 grams, (8 lbs. 5oz.)!  Sorry for not updating this site for 9 days, but my web-page authoring program's trial period ended.  I need to buy the program and install it, which took awhile to find the time.  Camryn continues to do very well feeding, both breastfeeding and on the bottle.  We're now at a point where she is feeding every 3 - 4 hours, whenever she demands it.  She will have a bottle twice per day, to get some added calories.  The rest of the time she will breastfeed.  Corinne has continued to stay overnight at the hospital, and is basically there all the time except an hour or two while she comes home.  Camryn sucked down 85 cc's (about 3 ounces) of milk from a bottle today from Daddy.  This was by far the best she's ever done.  We're probably talking not more than a week to have her come HOME!

Camryn will have some testing done on her kidneys today and tomorrow.  This is to find out more about the hydronephrosis and hydroureter (see 5/11/99 update for more info).  It involves some dye injections into her bloodstream and some x-rays.  

Update 06/19/99, 9am:  Camryn weighed in last night at 3,600 grams, (7 lbs. 15oz.)!  She should reach 8 pounds today!  Big news yesterday as Camryn "graduated" from the Neonatal Intensive Care Unit (NICU) to the Pediatric ICU.  She now has a private room, with a bed for mommy to sleep on.  It's so very quiet compared to the NICU, and nice to have a room for our family to be alone for hours on end!  Camryn was almost pushed out of the NICU, since they had 7 new admissions on Thursday.  I stopped up to the NICU last night to give the nurses some homemade cookies, and some of them almost came to tears that we left the NICU!  Camryn and Mommy are still working on breastfeeding, with some good success the last few days.

Update 06/16/99, 9am:  Camryn weighed in last night at 3,570 grams, (7 lbs. 14oz.)!  Now almost 8 pounds!  She still has not returned to the CPAP as she continues to breathe well on the nasal cannula.  Corinne and Camryn are still working on breastfeeding, and they are now starting to make some good progress.  Corinne has been staying full time (including overnight) at the hospital so she is there for all of Camryn's feedings.  Camryn hasn't been able to get a full feeding just from nursing yet, but was close last night.  Once she is entirely nursing for all of her nutrition, then we could be less than a week from going home.  Hopefully by the Fourth of July!

Update 06/12/99, 7am:  Camryn weighed in last night at 3,420 grams, (7 lbs. 9oz.)!  She still has not returned to the CPAP as she continues to breathe well on the nasal cannula.  Corinne and Camryn have continued working on breastfeeding, with some slow progress.  Corinne may start staying overnight at the hospital in a complimentary room so that she can be there instantly when Camryn wakes up for a feeding.  Big sister Colette held Camryn today for the very first time!  She's been hesitant in the past, and we don't blame her.  We coaxed her into sitting on Daddy's lap while he was holding Camryn, then asked her if she'd like to hold her.  She agreed, and held her for a few minutes.  It was definitely a picture opportunity we couldn't miss.  We haven't posted pictures lately because the last roll of film was a 36 exposure, when the prior several rolls were 12 exposure.  Look for new pictures tomorrow, Sunday, 06/09/99. 

Update 06/08/99, 7am:  Camryn weighed in last night at 3,280 grams, (7 lbs. 4oz.)!  Camryn has not returned to the CPAP since 06/03/99.  She continues to breathe well on the nasal cannula.  Camryn's nursing is progressing slowly.  She only wakes up for brief periods during the day, and usually not long enough to get a good breastfeeding session.  She will tend to only have enough energy to breastfeed for 10 minutes or so.  The nurse practitioner, lactation consultant, and occupational therapist will meet with Corinne this morning to discuss the "nursing strategy."   Since Camryn continues to breathe well, the next steps before she can come home are to be nursing for all of her nourishment, off medications, and continued breathing with nasal cannula only without CPAP.  She's breathing well and is working on the nursing.  She is on several medications (diuretics, to clear up her lungs, and antibiotic) currently.

Update 06/04/99, 7pm:  DAY 101 !!! Camryn weighed in last night at 3,175 grams, (7 lbs. even)!  A big one day gain!  She has been breastfeeding well today again, and no CPAP today.  Yeah!  Now... just don't get our hopes up too high!  Check out the new Developmental Care plan we received today with an update on her overall well being and development.

Update 06/03/99, 11pm:  DAY 100 !!! Camryn weighed in last night at 3,060 grams, (6 lbs. 12 oz.)!  She has been continuing to gain weight very well.  She's been gradually breathing better this week as well, so today they're trying to allow her on the nasal cannula full time with no scheduled time on CPAP.  If she starts to have difficulty breathing (faster rate or struggling), then they may place her back on the CPAP for a little while.

The big news this week is that Camryn is starting to breastfeed!  When she is awake and alert during the day at a feeding time, Corinne is able to breastfeed Camryn.  They are limiting it currently to twice per day, but will gradually increase it over the next several days.  They don't want to overdue it, as she will tend to tire easily because her lungs still aren't efficient enough to sustain the nursing activity.  She does pretty well latching on and coordinating the suck, swallow, and breathe.  Once Camryn begins to nurse for most feedings, we may get moved down to the "pediatrics" floor with a private room!  Corinne will have to start staying overnight at the hospital as well.

She had another eye exam today with clear findings (no evidence of ROP).

Update 05/30/99, 10pm: Camryn weighed in last night at 2,910 grams, (6 lbs. 7 oz.)!  She gained 70 grams, or about 3 oz. in one day.  The doctor said he would expect near that growth since they've put her on the "high octane", fortified milk.  Again, Camryn was breathing pretty well today, and they were going to try to keep her off the CPAP as long as she doesn't breathe too hard.  

Check out the Developmental Care link to the left to see the reports we get every few weeks regarding Camryn's development, goals, and challenges.  These reports are completed by an occupational therapist who observes Camryn.

I don't think I've ever mentioned this, but Camryn's lung condition is known as bronchopulmonary dysplasia (BPD).   BPD is a form of longer lasting lung disease.  It occurs in infants who have had severe respiratory distress syndrome (RDS), lung infection or were extremely premature at birth.  Camryn was extremely premature with low amniotic fluid, contracted Respiratory Syncytial Virus (RSV) while only 10 days old, and has had long term exposure to ventilators and CPAP.  She also had the episode on 03/13/99 (see update below) where she had some emergency "bag" breathing which may have damaged her lungs.

See links to the following for more information on these conditions:

Respiratory Syncytial Virus (RSV), RSV Info Center

American Lung Association - can find info on BPD, RDS, and RSV.

Update 05/29/99, 8pm: Camryn weighed in last night at 2,840 grams, (6 lbs. 4 oz.)!  She did the nasal cannula last night and did pretty well overnight with it.  She was only on the CPAP early this morning for 2 hours before going back on the nasal cannula.  Dad held her for a few hours this morning and she continued to do well on the nasal cannula.  The doctor mentioned today that if she continues to do well, Corinne should start nursing Camryn as much as possible.  Hope is on the horizon!

Update 05/28/99, 8pm: Camryn weighed in last night at 2,800 grams, (6 lbs. 3 oz.)!  HAPPY DUE DATE TO CAMRYN !  She was breathing very well today, with a total of 10 hours off the CPAP.  She will now get to have the nasal cannula oxygen support instead of the mask and tent.  This will be pretty nice while we hold her, so we don't have to continually hold that mask to her face.  Matt's sister Melissa came to town to visit for a few days, and she held Camryn this afternoon.

Update 05/27/99, 10am: Camryn weighed in last night at 2,760 grams, (6 lbs. 1 1/2 oz.)!  We've reached another plateau.  It took her about 17 days to add this last pound.  She's still doing about the same breathing as last weekend.  Still putting about 1/2 the time on the CPAP and 1/2 on the oxygen mask / tent.  Daddy gave her a bath last night, and she really enjoys it!  She gets quite comfortable and relaxes well.

Update 05/23/99, 7pm: Camryn weighed in tonight at 2,650 grams, (5 lbs. 13 oz.)!  We're on day 87 today.  She's been breathing better yesterday and today, with little or no grunting.  They started her on the diuretic drugs on Friday, which seem to be starting to help today.  Her oxygen requirements are lower today and seems to be breathing easier.  

Grandma & Grandpa Miller visited this weekend.  We let Grandpa Miller hold Camryn on Friday night for an hour, and Grandma Miller was able to hold her on Saturday morning.  Uncle Jason held her today.  We were unable to talk Colette into holding her all by herself.  She seemed to be just a little cautious and uncertain, as this was the first time we offered to her that she could hold her baby sister.  Hopefully next weekend she'll come around.  Grandma & Grandpa took Colette with them for a week.  We called it Colette's vacation!  We normally take a week of vacation in April and always had Colette visit Grandma & Grandpa's while we were gone.  She loves it there, and they have plans to make it to the Dairy Queen every night!

Update 05/20/99, 11pm: Camryn weighed in tonight at 2,630 grams, (5 lbs. 12.5 oz.)!  She took a step back today as she had more trouble breathing on her own with the mask / oxygen.  She was grunting quite a bit, which is a sign that she's trying to keep the sacs in her lungs, called alveoli, open during her breaths and exhales.  This simulates what the CPAP machine would do for her, so it's a sign that she still needs the CPAP more.  The time off the CPAP was scaled back yet again to a few hours per 12 hour nursing shift.  The neonatologist will probably order the diuretic drugs soon to help her lungs.

Daddy held Camryn on Tuesday night for a few hours.  She was on the CPAP during the first hour as she was just placed back on it in the late afternoon.  She was very uncomfortable, and probably was thinking that "I should be off this uncomfortable CPAP while my Daddy holds me."  She squirmed and squirmed so much it made Daddy very, very uncomfortable.  It wasn't fun, and just got to be too much, after 84 days!  She kept squirming away and de-SATing (alarms that her blood oxygen was too low).  It was probably the most frustrating experience that Daddy's had, since her early days.  After that hour, the nurse agreed to take her off the CPAP and she did VERY well almost immediately!

She's recently been awake longer and even somewhat social.  When she's placed onto us, she'll frequently wake up and watch Mommy or Daddy for up to an hour and a half while we hold her.  She'll respond with facial expressions as we talk or sing to her! 

Update 05/18/99, 6pm: Camryn weighed in last night at 2,600 grams, (5 lbs. 11.7 oz.)!  We will be consulted by a urologist in the next few days to discuss some tests / scans that they will recommend for Camryn's kidney problem.  They probably won't do any tests until she's totally off the CPAP breathing assistance.  She had a bath today, and rested quite comfortably on mommy.  She'll be off the CPAP for 12 hours today.

Update 05/16/99, 8pm: Camryn weighed in last night at 2,510 grams, (5 lbs. 8.5 oz.).  It's taken her just 8 or 9 days to gain 1/2 pound, so she should easily be over 6 pounds by her original due date, which was May 28th.  Her feedings continue to be scaled back a bit, but extra calories in the form of fortifiers and "micro lipids" (fats) add in additional calories so that she continues to gain weight.  The doctor wants to reduce her liquid intake to help clear up the wetness and crackling in her lungs.  She been doing better since Friday, and able to get off the CPAP for 8 hours total today.  Still a long way from the total of 20 hours per day off that she had been doing the last week, but she'll probably be able to get back there soon.

The doctor is considering diuretic drugs to assist in getting the wetness out of her lungs.  This class of drugs will have her own system get the wetness out on its own, and passed through her urine.  He's a little hesitant to give the drugs with her hydronephrosis and hydroureter conditions (see update on 05/11/99 for description).

Her ultrasound on Friday showed that her left kidney and ureter were larger than the last ultrasound taken shortly after birth.  A urologist on staff at the hospital will be consulted tomorrow.

I've also updated Camryn's Story on 05/16/99.

Update 05/14/99, 8pm: Camryn weighed in last night at 2,440 grams, (5 lbs. 6 oz.).  The doctor is scaling back her feedings not only because she gained so much weight in one day, but she was starting to develop some "wetness" in her lungs.  Reducing the liquid milk intake will apparently help reduce the wetness in her lungs.  Yesterday wasn't a very good day for her, as she was placed back on the CPAP after only being off of it for a few hours.  She was on it for 24 hours straight.  She was starting to breathe too hard and required more oxygen.

Today she apparently did very well while Corinne was holding her, including getting a bath today.  They took her off the CPAP onto the mask while Corinne held her for 4 hours today.  It certainly keeps going "two steps forward, one step back."  It's definitely hard to take those steps back!

Corinne and Matt took an infant CPR class last night at the hospital, learning CPR for both children and infants.

Update 05/12/99, 7pm: Camryn is now on a DIET !  She weighed in last night at 2,450 grams (5 lbs. 6.4 oz.)!  She's a Miller!  You can really tell how big she is getting...  bigger body, rolls of "fat", and chubby cheeks!  On this pace, she should be well over 6 lbs. on her due date, which was May 28th.

They reduced the amount of her milk feedings slightly and decreased the fortifier from 24 calories per ounce to 22 calories per ounce.  She was getting up to 60 ml (2 oz.) of milk per feeding, every 4 hours.  She had her two month immunization shots today.  She also had another eye exam which showed no changes since last week, stage one ROP (retinopathy of prematurity).  See update on 05/05/99 below for a brief description of ROP.

She might be going up to 10 hours off the CPAP per 12 hour nursing shift tomorrow. 

Update 05/11/99, 8pm: Camryn weighed in last night at 2,370 grams (5 lbs. 3.5 oz.)!!!  Over the five pound mark!  Still the same with 4 hours on CPAP, 8 hours off.  Look for new pictures tomorrow night.  Camryn had a chest x-ray today with no changes apparent.  She will get an ultrasound later this week to check out her kidneys and urinary tract.  

Camryn was diagnosed with hydronephrosis and hydroureter from a duplication of her left kidney.  During a routine ultrasound in December, they identified this condition and we had several follow up ultrasounds and consultations in January and February, including specialists at The University of Iowa Hospitals and Clinics.  This condition didn't play a significant role in her premature birth.

Duplication of her left kidney means that the upper 1/3 - 1/2 of the kidney is abnormal, with some fluid backed up in both this portion of the kidney and the ureter (tube going from kidney to bladder).  There has been little concern about this since her birth, but she is on constant antibiotics to prevent a urinary tract infection.  If the condition warrants in the near future, there may be surgery required to correct it.

There is a song that Daddy often listens to during the short drive from home to the hospital every night.  It brings tears to his eyes almost every time.   It's by John Denver, called For You.  It's a romantic song, but he thinks of it in terms of his tender daughter, Camryn.  Click here to see the lyrics, also placed a link on the left column.

Update 05/07/99, 11pm, Day 72:  Camryn weighed in tonight at 2,250 grams (4 lbs. 15.5 oz.)!  ALMOST 5 lbs!  It only took her 16 days to gain one pound.  Not much new to report, she's now doing 4 hours per 12 hour nursing shift on the CPAP.  Daddy and the nurses had a little chuckle last night.  The nurse attending to Camryn asked how we were doing.  Daddy replied "Just fine... she's doing her standard grunting, moaning, and tooting."  She said, "just like a regular preemie."  My reply:  "And to that, Corinne would say 'Just like her Daddy!'"

Update 05/05/99, 7pm:  Camryn weighed in last night at 2,170 grams (4 lbs. 12.5 oz.).  She continues to do well on her breathing, and has increased her time off the CPAP to ten hours for every twelve hour nursing shift, or 20 hours per day.  She was breathing a little fast at times today, so they didn't increase this time off from yesterday.  It could be any day now that she can be off the CPAP and in either the oxygen tent or mask (see link where Daddy is holding the mask that is placed gently on her face), or the nasal cannula.  She had her third eye exam today, and they found too many blood vessels in her eye that could cause sight problems if gone unchecked.  This condition is called ROP (retinopathy of prematurity) is common in preemies.  She has stage 1 ROP, which normally goes away and doesn't require intervention.  In more serious stages, it often be treated with laser surgery.  She will now get weekly eye exams.

Having so much time off the CPAP has allowed Corinne to "nuzzle" her, which is basically trying to nurse.  She is very eager to nurse, as almost any little touch to her cheeks while awake causes a fast reflex to open her mouth towards the touch!   It's really cute.

Update 05/03/99, 5pm:  SEE NEW PICTURES POSTED TODAY TO THE LEFT, DATED 04/28/99 - 05/03/99 !!!  Camryn weighed in at 2,090 grams (4 lbs. 10 oz.).  Camryn has been responding quite well to the steroids she was given from Tuesday through Saturday.  On Friday and Saturday, her O2 requirements were in the high 20s to low 30s percentage.  She is now able to be off the CPAP for eight hours during each twelve hour nurse shift, or 16 hours per day.  Yeah!  She's placed on either an oxygen mask or tent (hood) when she's off the CPAP and appears to be breathing much more comfortably and easily than a week ago.  Yesterday (Sunday), however, her O2 requirements were back up in the 40s and 50s, so we don't know exactly what to think quite yet.  The doctor did say today that she may be off the CPAP by the end of the week.  We'll try not to get our hopes up too high.

Yesterday, Corinne, Colette, and Matt went to Iowa City for the afternoon and evening.   It was our first venture outside of Cedar Rapids in 12 weeks!  We went to Active Endeavors shopping, 4:30pm mass at the Newman Center, went to the Airliner for our favorite pizza, then went back to the Newman Center for the Newman Singers Spring Concert. The concert was wonderful, as we always enjoy seeing the Newman Singers.  We even noticed one of Colette's former teachers, a sophomore at the University of Iowa, was one of the singers.  We spoke with her afterwards, and found out that each year they have over 300 people try out for this group for only about 10 open spots.  We bought three of their CDs and have had a set of 7 tapes since about 1992.  They are awesome, with terrific music to listen to anytime.

For those who aren't familiar, the Newman Center is a Catholic student church/congregation right off the University of Iowa campus in Iowa City.  It has two priests that have been there for at least 12 years.  They are wonderful with college kids, and they promote a terrific spiritual atmosphere on campus.  The Newman Center is a newer building (built in 1991) with somewhat progressive architecture.  They have the Newman Singers group, who for years has been a very successful group of kids headed by a guy by the name of Joe Mattingly.  They are nationally known for their music, and travel across the nation during the school year giving concerts to churches, congregations, and even the Pope when he visited the Denver area a few years ago.   They sing a lot of standard Christian songs, but also Joe Mattingly has written many songs that are favorites of any Newman Singer fans.  Corinne and I always get pumped up about them when we see them, and I'm even thinking about donating my web-site development know-how to build a web-site for them.

Update 04/30/99, 7pm:  SEE NEW PICTURES POSTED TODAY TO THE LEFT, DATED 04/25/99 - 04/28/99 !!!   Camryn weighed in last night at 2,040 grams (4 lbs. 8 oz.)!  She has continued to breathe quite well the last few days, probably due to the steroid treatment started on Tuesday that goes until Saturday evening.  She had a echo-cardiogram yesterday, since continued steroid treatments (Camryn has had three treatments) can tend to thicken the walls of the heart.  It's an ultrasound of the heart, and results were normal.   Her oxygen requirements have been only in the 20's and 30's the last few days.   The oxygen percentage in air is about 21%, so she's getting close to getting off the breathing assisted CPAP.  She'd probably go onto a nasal cannula again, but that's much more manageable and more comfortable than CPAP!

Grandma & Grandpa Miller are arriving tonight, as well as Aunt Melissa, to visit for the weekend.  Yeah!  They're going to be surprised with how big Camryn is now, as they last saw her on Easter weekend (4/2/99) at only 3 lbs!

Update 04/28/99, 6pm:  Camryn weighed in last night at 2,010 grams (4 lbs. 7 oz.)!  Again, gaining weight like there was no tomorrow!  She's growing in size and filling out.  She is now more than doubled her birth weight of 2 lbs. 2 oz.  We just finished a roll of film today, so hopefully tomorrow night I'll have them developed and posted on the web-site.

She did very well today on the CPAP.  Corinne held her for about 4 hours today, and she was "SAT"ing very well and her oxygen requirement level was only about 40%.   Over the weekend she was requiring 60%+, so hopefully this round of steroids has given her a boost.  Her respiratory rate decreased to more normal levels (40s instead of the high 70-80s) as well as her heart rate too (140s instead of 170s).  She rested very well both today while Corinne held her and last night as Matt held her from 8pm to 11pm.

Update 04/27/99, 7pm:  Camryn weighed in last night at 1,960 grams (4 lbs. 5 oz.)!  Gaining weight like mad!  Her lungs, however, are a different story.  Her lungs haven't really made any progress since 03/30/99.  The doctor was waiting for her to get to about 2 kilograms (2,000 grams) before he ordered any more advanced procedures to help her lungs.  At 2 kilo's, he thought she would be big enough to improve her breathing on her own.  Well she's attained near that weight and hasn't improved on her own, so yesterday she was given a breathing treatment consisting of a drug called albuterol and another drug, we forget the name.  It was meant to relax her airway muscles, with the intent that her oxygen requirements with the CPAP would go down.  She had a "paradoxical" reaction to the treatment as she actually required more oxygen after the drugs were administered.  That stumped 'em. 

After that, they did a chest X-Ray and blood tests.  Nothing out of the ordinary as there were no signs of infection nor collapsed lungs tissues.  Her red blood cell count was low again, at about 33.  Again, they try to keep it at 40, so she was given another blood transfusion last night.  This time the saline lock (IV) was placed in her left wrist.  Poor little girl, poked again.

They suspended the time off the CPAP until she improves.  They started another five day course of steroids today.  This is the third course of steroids given to her.   They didn't want to do this treatment again because of it's side affects.  One side affect is it could cause the transient thickening of the heart muscle.  They are scheduling an ultrasound to check her heart on Friday.  By "transient", it means only a temporary thickening during the treatment.   

Two steps forward, one step back.  Or sideways?  Or standing still?  We're obviously disappointed, and it's hard to take after a full nine weeks in the NICU.   

Update 04/24/99, 5pm:  Camryn weighed in last night at 1,840 grams (4 lbs. 1 oz.)!  She was 8 weeks old on Wednesday of this week.  Camryn is now on a schedule to get 4 hours off of the CPAP every 12 hour nurse shift.  Basically, during the time that Corinne holds her in the day and the time that Matt holds her in the evening.  She does pretty well during these times, maintaining her oxygen levels but tends to breathe rather hard.  As she's growing quite well, she is starting to fill out her cheeks!

Camryn is now the VETERAN of the NICU.  All other babies around her age have either moved down to the NICU Annex (on the Pediatric floor) or have gone home.  There are no other babies in the NICU even born before April 1st.  I've commented to the nurses that we've been there so long that Corinne and I have learned enough that we could start to help out and get a discount on Camryn's care! 

Update 04/21/99:  Camryn weighed in last night at 1,790 grams (3 lbs. 15 oz.)!  Almost 4 lbs!  She is now getting 45 cc's (1 1/2 oz) every 4 hours, for a total of 135 cc's ever 12 hours.  We will soon be making a dent in the frozen milk section of our new deep freezer!  She now gets 6 hours of time off the CPAP each day to rest her nose and get her weaned off the breathing assistance.  She definitely enjoys the time off it!  There was a baby born on Monday at 1 lb. 13 oz, five oz lighter than Camryn's birth weight.  He is very small, and brought back deja vu for us!  The poor little guy is doing ok, but on the same high frequency ventilator that Camryn was on at her birth.

Update 04/18/99:  See NEW PICTURES to the left, developed today (04/18/99).  Camryn weighed in at 1,700 grams (3 lbs. 12 oz) last night.  She is now the veteran of the NICU, by about 3-4 weeks.  Recently, there has been 6 babies taken to the NICU Annex, which is a place that they go to after getting healthy enough, not requiring the critical care provided by the standard NICU.  They will be preparing to head home once they "graduate" to the annex.  Camryn would be there if it weren't for her lungs.

Camryn's doctor wanted to give the poor little girl's nose a rest for a few hours this afternoon.  He decided to let Camryn get off the CPAP for two hours, getting enclosed in the little "bubble" or oxygen tent (see picture's dated 04/18/99 to the left).  Oxygen was pumped into this tent to help her breathe.  She did very well and was quite comfortable, as you can see.  They are going to try this every day for more hours each time, so maybe she can get off the CPAP by doing it this way.  It wasn't quite working by weaning the oxygen level on her CPAP.  Hopefully this will help, and it will be much more comfortable for her.

We had some discussions over the last week with the nurses and the doctor regarding some of her long term status.  They recommend "conservative" common sense once she is home to protect her from infections.  Any sickness could land her, as most micro-preemies, back in the hospital.  Limit visitors to healthy (non-infectious) people.  Limit the number of kids visiting.  Everyone, family and visitors, wash their hands all the time:  when you arrive to the home, before you touch Camryn, after you touch food, after bathrooms, etc.

They also suggested that we do not have her in a daycare setting for the first year or so.   We will have to put a little thought into this.  Corinne could stay home and not work for the 1 year.  This would put a strain on us financially, but we could make it.  No ski boat this summer!  Or... we hire a babysitter to come to our home.  We'll probably want to keep Colette in daycare since she does SO incredibly well with her school time.  I told my mother (Grandma Sue) to dust off her babysitting resume and send it to me!

Camryn will probably have to have oxygen supplied through the nasal cannula for a period of 3 - 12 months after she comes home.  This means full or partial connection to an oxygen tank.  We may need a large size tank in our home, with oxygen tubing 50 foot plus in length to reach around our house.  It will mean lugging tanks around with us as we head outside.

For the best health interests of baby Camryn, all this means we'll probably have to be selective and careful about visitors and travel outside our home for the first year or so.   I hope everyone understands.

I picked up this poem last night on the web in a preemie discussion forum.  It hit home to say the least.

As I Love You Through The Glass

As I love you through the glass
a tiny hand sweeps across the blanket
reaching out to me.
You lie there in the stillness
of your slumber clinging to life;
I reach inside to touch you
and you stir slightly;
I feel a tiny breath like a feather
caress my fingers
as I love you through the glass.
One eye opens
easily staring into mine;
Can you see me?
Can you feel my presence
as I love you through the glass.
I ache to hold you;
I await the moment
when you peacefully rest in my loving arms.
A silent tear rolls down my face;
I slowly turn to walk away
only to glance back one more time
as I love you through the glass.

(c) 1998 Elena Murphy All Rights Reserved

Update:  04/17/99, 9am:  Check that...  Last night Camryn weighed in at 1,690 grams, or 3 lbs. 12 oz.!!!  She did very well last night as Daddy held her for 3 hours from 8 to 11pm.  It was quite busy yesterday, with four new admissions to the NICU.  They've had big babies with problems, and just one smaller baby.  Wednesday evening there were two emergency cesarean deliveries with babies only 23 weeks along.  Neither one made it.  The NICU life is full of happiness AND heartbreak.

Update:  04/16/99, 7pm:  Last night Camryn weighed in at a whopping 1,640 grams, or 3 lbs. 10 oz.!!!  Camryn had a good day today with Mommy.   She rested very well and had a bath today.  She's still on the CPAP as she still is requiring a little too much oxygen.  The doctor thinks it will be day by day and could happen soon.  Dad will hold her tonight.  No Friday night bar hopping!

Update:  04/13/99, 7pm.  COLETTE just typed her name in all caps here.  Quick update... nothing too much new.  She is now about 1,540 grams, or 3 lbs. 6 oz now.  She continues to remain stable and is growing on target.   Her CPAP was turned down a notch today and the respiratory therapist and doctor have both made impressions that it could only be a few days and she could be off the CPAP.   Hope so!  We continue to hold her each day, both mommy during the day and daddy at night.  Her favorite thing to do while we hold her is to munch on her little pacifier!  She sucks 4-7 times, takes a few second break, then does it again.   She can stay very content doing this for an hour or more.

Update:  04/09/99, 6pm.  Camryn weighs 1,500 grams as of 04/08/99, or 3 lbs. 5 oz.  Camryn's breathing status is stable, and better than earlier in the week.  She was started on steroids on Tuesday, with some apparent improvements in her breathing ability.  She remains on the CPAP at moderate settings.   They've increased her feedings slightly this week.  She is definitely getting bigger, now over 1 pound (or 50%) heavier than her birth!

She's doing well overall, especially growing well.  We're anxious for her to get off the CPAP.  She's now just over 6 weeks old and has only been off the ventilator/CPAP for only 1 day.

Update:  04/06/99, 12pm.  Camryn now weighs 1,480 grams, or 3 lbs. 3 oz.  Camryn's breathing difficulties continued and even worsened on Sunday evening and Monday.  Her CPAP breathing assistance (pressure, oxygen supply, etc.) were increased to accommodate her requirements.  They made a comment that she may need to be placed back onto a ventilator.  Camryn had a few small blood transfusions on Monday.  Testing showed no sign of infection and her red blood cell count increased from the transfusions.  She had a few x-rays, and one showed some signs of portions of her lungs that have collapsed slightly.  When this happens, they keep a close eye out for pneumonia, but have not seen signs of this yet.  She was placed on a few antibiotics once they saw this.  They also gave her a breathing treatment yesterday afternoon, with a drug commonly used in prescription asthma medication.  This seemed to improve her breathing somewhat, where her oxygen requirements went from 100% to 60%, and has maintained with little change.

Overall, this condition could simply be caused by her long term exposure to ventilation and CPAP breathing assistance.  The doctor said today that he is considering placing her back on a five day steroid treatment to help her lungs.

Update:  04/04/99, 6pm.  NEW PICTURES to the left!   Camryn had a good Easter weekend.   She received a precious gift made by Grandma Sue (Miller)...  a Sunbonnet Sue Quilt! The best picture of Camryn yet.

Little has changed over the last few days.  She weighs 1,400 grams, or just over 3 lbs. 1 oz.  She is doing pretty well on the CPAP, but this afternoon started to de-SAT frequently while Corinne was holding her.  De-SAT means her oxygen percentage in her blood would drop below target levels.  There was a lot of commotion in the NICU, which can sometimes cause her to be a little irritated and de-SAT, but it was probably because she is low on her red blood cell count.  The doctor wants to delay a blood transfusion to get her own bone marrow to kick in and produce the red blood cells instead of relying upon the transfusion.

Last week we had a few big events...  We took Colette to Sesame Street Live.   She loved it.  And... Corinne got her braces off! 

Update:  04/02/99, 7am.  Camryn continues to do well.   Her weight last night was 1,380 grams, or 3 lbs. 1 oz!  She's gaining weight fast!  She's still on the CPAP, but making progress by reducing her supplemental oxygen and pressure requirements.  Hopefully in 3-4 days she can be off the CPAP.   Maybe by Easter Sunday we can take it off for at least a few minutes, allowing us to put on the new Easter dress that Grandma Miller made for her.  She will most likely need another blood transfusion today, as she hasn't had one for 2 weeks.  The Miller family will be visiting us this Easter weekend.  Happy Easter!

Update:  03/31/99, 7am.  Camryn is back on the CPAP.  Oh well, it was great while she was on the nasal cannula for 30 hours or so!  She was breathing just a little too hard on Monday and Tuesday, so Tuesday afternoon they put her back on the CPAP machine.  She's only requiring fairly low settings on the CPAP and oxygen, but it could be up to a week before they try to do the nasal cannula again.   We were hoping that she would be off the CPAP when Matt's parents come to visit for the Easter weekend.  She still gets uncomfortable at times and tries to squirm out of the CPAP "harness".

She's doing quite well otherwise, as feedings continue at a good pace, she seems to be growing quickly, and she's taken a liking to the little pacifiers they give to her!

Update:  03/30/99, 7am.  CAMRYN IS OFF THE CPAP!  She was making good enough progress that yesterday morning (Monday, 03/29/99) they took the CPAP machine off!  They put a "standard" supplemental oxygen supply called a nasal cannula.  This is a small clear tube that runs across her cheeks and two small prongs that go up her nostrils.  It's what you would commonly think of when you hear that someone is "on" oxygen.

She was breathing a little hard last night, which means that she has to work at it to breath.  If this continues or gets worse, they may have to place her back on CPAP.   Let's hope things continue to go well and that doesn't happen.

Both Matt & Corinne were elated when we came to the hospital in the late morning and saw her off the CPAP!  There are so many neat things about this, and we had to wait 33 days to enjoy them.  She wasn't struggling with the breathing apparatus.  She would frequently squirm, trying to rid herself of the CPAP.  We could see her face very clearly!  We can now hold her in our arms rather than just the kangaroo.   We can hold her anytime, lifting her out of the incubator without the assistance of the nurse and respiratory therapist.  And last, we can relax and not worry that the ventilator or CPAP is in the right position.  YEAH!

Update:  03/27/99, 8am.  CAMRYN IS OFF THE VENTILATOR!   As she was 31 days old yesterday, she finally was off the ventilator!  She received a few doses of steroids on Wednesday and Thursday, helping her lungs to improve.   She is now on the CPAP breathing assistance and still making progress with this as her supplemental oxygen has been diminishing as well.  Hopefully this will be removed within a few days.  She is still receiving 23 cc's of milk and they are fortifying this with an additional 24 calories per feeding to help her grow.  She does seem to be growing at a quicker pace now.  Her weight on Wednesday was 2 lbs. 10 oz.

There has been some worrisome happenings with other babies in the NICU.  A set of twins born a day before Camryn and similar in size to Camryn, were diagnosed to have a fungal blood infection.  Another baby was also diagnosed with this infection, while a fourth caught it several weeks ago.  The NICU hasn't had a fungal infection for greater than three years.  These babies were placed into a special area of the NICU and in contact isolation (similar to what Camryn went through when she had the RSV virus).   They cleaned all the machines, incubators, walls, and floors last night to diminish the "epidemic" as much as possible.  I guess it can usually be controlled when diagnosed properly.  One of the twins yesterday had a spinal tap because they thought it was meningitis, but found the fungal infection instead.

Update:  03/22/99, 7am.  Camryn is now getting 23 cc's of mommy's milk every 3 hours and digesting it all very well.  Her picc line was removed yesterday (Sunday) so she now doesn't receive any additional nutrition beyond mommy's milk.  It's nice to see one tube removed from her!  The ventilator was turned down again over the last few days to 20 breaths per minute assistance.  The nurse said last night that this is about as low of settings as the ventilator will go, so she expected to see the ventilator removed very soon.  The doctor didn't quite give us this impression, but hope it's just around the corner.  She may go back on the CPAP machine (see 03/05/99 update below) for a few days before she's actually totally free of breathing machines!  That will be SO nice!

Her white blood cell count was back to normal a day after it was elevated late last week, so we don't see any further signs of infections.  She needed a blood transfusion again on Friday as her red blood cell count was low.  They had to find a new IV line sight for this on Friday morning.  As she's had an IV in all the standard sights, it was very difficult for 3 experienced nurses to find a good sight.  The poor little girl was poked and prodded for several hours Friday morning, afternoon, and early evening before they finally found a place where the IV worked (in her left hand).  It was a lot to take seeing her get so many needles poked into her as they were searching for a sight.

Both Corinne and Matt continue to hold her for 2-5 hours each per day.  Usually Corinne stays with her from morning to the afternoon, and Matt holds her from 8pm to 11pm or so.

Update:  03/20/99, 9am.  Camryn again is doing quite well.   She is now at 20 cc's of milk every three hours, so she is now at full feedings!   If all goes well, her picc line will be removed from her left arm tomorrow as she won't need additional nutrition and sugars beyond her milk feedings.  Then she can be placed onto a steroid to help her lungs develop and get her weaned off of the ventilator easier.  The last two days have seen her ventilator settings reduced from time to time, from 30 breaths per minute assistance to 24 breaths per minute last night.

Two of Corinne's sisters arrived for a visit last night, Patty and Eileen. 

Update:  03/18/99, 5pm.  Camryn is doing 17.5 cc's of milk every three hours.  She got a bath today, with the help of Mommy.  Her white blood cell count in a blood test this morning was elevated, a sign of an infection.   The doctor predicts it's a bacterial infection in the "PIC" (IV) line.   They promptly put her back on two antibiotics to combat it early.

Camryn had new neighbors in the NICU today.  On one side, twin boys arrived to this world this morning.  One is named Michael.  The other is Jordan!  Hee hee!   And...  another baby, possibly full term, arrived from Mercy Hospital, transferred to the St. Lukes NICU.  Doctors and nurses worked on this infant all morning as it was not doing well.  Eventually they had to transfer the poor little child to the University of Iowa hospitals.  We don't know what was wrong, but things like this probably happen more often than we all think.  Count your blessings.

Update:  03/17/99, 7pm.  Camryn weighs 1,140 grams, or 2 lbs 8oz.  This means she has gained roughly 155 grams, or 5 ounces.  She was doing 15 cc's of milk today.

Update:  03/16/99, 7pm.  Camryn's making further progress.   She was moved from the isolation room to the standard NICU this afternoon.   Two consecutive days of tests showed no sign of the RSV virus in her lungs.   Yeah!

She is now up to 12 cc's of Mommy's milk.  The goal is to get to 20 cc's, then they can remove the "PIC" line from her arm.  This "IV" line goes from her left forearm into a blood vessel, passed her elbow and shoulder, to near her heart.   This line has been used for standard nutrition, fluids, and some "lipids" or fats.  Once this is done, she can get some doses of steroids which will allow for better lung development and help get her off of the ventilator.

I should have pictures of her developed by Thursday, so I'll post at least the highlights of them around that time to this web-site.

Update:  03/15/99, 8pm.  Again, Camryn is doing very well.   We're now up to 10 cc's of Mommy's milk every three hours.  The goal is to get to 18 - 20 cc's in a few days, then possibly add some calories / fat to the milk for extra nutrition.  It will still be several days or longer before the ventilator is removed, ughh!  Just the fact that she has been on it for quite a few days means that it will be more difficult to wean her off of it.

Update:  03/14/99, 5pm.  Camryn is doing very well.  She requires less suctioning of her lungs, so the virus seems to be diminishing.  She is now up to 8 cc's of Mommy's milk.  Each of us have continued to kangaroo hold her this weekend for 2-4  hours, twice daily.

Update:  03/13/99, 11am.  We had a roller coaster ride Friday night as Camryn had a very scary episode.  Both Mommy and Daddy visited Camryn last night as Grandma Barb and Papa Saunders (Corinne's parents) were visiting and watching big sister Colette at home.  Matt was kangaroo holding baby Camryn from 9pm to about 11pm, when the nurse and respiratory therapist were getting ready to transfer Camryn from Daddy's chest to the isolette (incubator).  Camryn moved slightly, which is quite common.  But this move triggered the ventilator tube to dislodge out of the trachea (lung tube) and into the esophagus (stomach tube).  Luckily both the nurse and respiratory therapist were there to get on top of the situation quickly.

The first minute or so was trying to move the tube in and out slightly to get it back into place.  Camryn's hands, feet and the rest of her body turned a deep bluish purple.   All on Daddy's chest.  They then moved her quickly to the isolette and got some assistance from the rest of the NICU staff.  They tried to suction her lungs from the "goop".  All this activity in her throat caused her to regurgitate the milk she had received 30 minutes earlier.  They called the doctor who was reached on her car phone as she was leaving the hospital.  She quickly ordered the existing tube be removed and a new one to replace it ("intabate").  After a few minutes that was completed and her condition quickly recovered.

It was definitely a critical situation.  Her lungs weren't receiving oxygen very well the 4-6 minutes.  Her oxygen saturation level is monitored constantly and the goal is to maintain a 92 - 96 reading.  This episode led the oxygen saturation level to bottom out at 14 momentarily.  Her heart rate went from a normal 130 - 160 beats per minute down to the 60s.  The nurses and doctors did mention, though, that Camryn held up well under the circumstances with her heart rate and other vitals.  They performed blood tests and chest x-rays shortly afterwards and they proved she was doing well.  They even gave her 5 cc's of mommy's milk about an hour afterwards.  She did well overnight and so far this morning.  There isn't any short or long term affects of this, nor do they expect the situation to occur again.

Corinne and Matt stayed the night in the hospital as they provide permanent complimentary private rooms for parents of babies in the NICU.  We borrowed some scrubs as pajamas.   Big sister Colette mentioned to Daddy this morning that he was playing dress up, pretending to be a doctor.

The nurses, respiratory therapist, tech, etc. all performed exemplarily!  They did a wonderful job of getting on top of the situation quickly, proving their professional skills with a sensitive and loving touch.  We feel, however, that this situations was simply something that shouldn't have happened.  We realize the ventilator tube is sensitive, especially in such a tiny infant.  The fact remains that the taping holding the tube to her upper lip, from earlier in the day, was not done well and could have contributed significantly to the incident.

Keep visiting for more updates!

I'm taking vacation / sick time until 3/10/99, so it will give our family some time to adjust and be with her in these critical early days. We haven't fully decided what Corinne will do yet. Either off of work from now until Camryn is home from the hospital for 2-3 months, or go back to work within a week or so and take the time off of work once Camryn gets home. We'll see, it's obviously an unexpectedly early leave, but we should be prepared to let her take an extended time off of work if she decides.
 

Camryn has 6 tablespoons of blood, standard for a baby of her size. They consistently take blood from her for testing about 6 - 8 times per day for standard premie testing. Since they remove so much blood, and her bone marrow is still to immature to make blood herself, they have to replace the blood with a transfusion (only 1 tablespoon). She's now had two of them.

Camryn had her third blood transfusion today. They are still trying to wean her off of the ventilator. Hopefully, by this weekend and then we might be able to hold her, YEAH!!!!!  She is so cute!!! She has a tiny wrinkly butt. We saw her with her eyes open yesterday. It was quite a struggle for her to try and keep them open.

We are all doing pretty well out here considering. We are settling into a routine this week after all the hustle and bustle of last week. Its nice to finally be home. A near week in the hospital was enough for me. Baby Camryn is doing well for how early she arrived. She is on a high frequency ventilator and has been trying to resolve a condition called P.I.E.-pulmonary interstitial emphysema. We are hopeful that she may be off the ventilator by the end of the week. Then we can start holding her.

She has had three blood transfusions so far. The doctors tell us she has the equivalent of 6 tablespoons of blood in her body. What they take out they have to replace, because her bone marrow is not mature enough to do it for her.  They started supplementing her IV's with breast milk on Saturday. She did real well for 2 days, then yesterday they increased the amount from 1cc to 2 1/2 cc and she had too much residual fluid left in the stomach, so they d/c'd the feedings for now. 1cc = 1/5 of a tsp There are pictures of her on the web site.

Thanks again for your thoughts and prayers. We can use every little bit. She is such a precious little girl. I think she knows she has prayers  coming in from around the nation, because she is doing remarkably well - as the doctors keep telling us.
 

Just thought I'd give you a quick note, in case you haven't heard, that Corinne delivered a new baby girl yesterday morning. Her name is Camryn Margaret Miller, born on 2/24/99 at 8:42am. Corinne was about 26 - 27 weeks along when she delivered, about 13 weeks premature. Camryn is in the Neonatal Intensive Care Unit (NICU) at St. Lukes Hospital in Cedar Rapids. Corinne will probably be in St. Lukes through tomorrow. All is ok for now, the best that could be expected given a baby born over 3 months early. Camryn was 2 lbs, 2 3/4 oz (985 grams). Tiny little angel.

Corinne was admitted to the hospital back on 2/19/99 with heavy bleeding and stayed in the hospital on strict bed-rest trying to prevent a delivery so early. It was an aparent abruption of the placenta (peeling away from the uterus), with continued light to moderate bleeding occuring from Friday through Tuesday evening. On Wednesday morning, about 4am, Corinne started having more bleeding again and contractions. The contractions continued through about 6:30am, when they gave her a shot to try and stop the contractions. It only worked for about 10 minutes when they started again. Things progressed with Corinne becoming 3, then 4, then close to 5cm dilated by about 8:15am. At 8:30am when the obstetrician was checking Corinne out, the baby's heartbeat went down from the 130-150 heartbeats per minute to about 60 and didn't recover. They immediately went for a stat C-Section in the OR room, just 30 feet away from the labor & delivery room. Well, Corinne was sure the baby was "coming" and ended up delivering vaginally 1 minute after being transfered to the OR bed. Camryn was baptized right away by a Catholic priest and they measured her APGARS at a 6 after one minute and a 9 after 5 minutes. APGARS is a index given by the neonatologist (premie doctor) covering the overall well-being of the infant, ranging from 0-10.

Corinne's been fine and a little cramping this morning. Baby Camryn was on a ventilator since birth and was switched to a high frequncy ventilator this morning because she was having air escape the standard "air pockets" in her tiny, underdeveloped lungs. Things are stable, but the doctor prepared us that even though we have good news that we made it past the critical first 36 hours, the 2nd and 3rd days could bring some tense situations. A lot to take to say the least.

My Mom and Dad arrived on Friday afternoon when Corinne was first admitted. Then Mom stayed with us this week to help take care of Colette and the household. Two of Corinne's sisters arrived yesterday afternoon to help out as well. My Dad had to get back to work this week but will probably come back on Friday or Saturday. Looks like a few other of Corinne's family may arrive this weekend, so we've have plenty of help and support in the next few days.

Corinne will probably be discharged Friday 2/26/99 by 12noon or so.

We'll try to keep you updated by e-mail as well. I'll also post updates on my web-site this weekend, with a few pictures for everyone to see.