Thursday, June 29, 2006

Despite Our Best Efforts

Despite our paranoid isolation of Beth, she has somehow contracted conjuctivitis. For the last three days her right eye has had a little bit of green goop in the corner when she awoke. On Wednesday morning, her little eyelashes were glued shut. We can't figure out where she may have contracted this highly contagious infection. Elliott would be the likely source but his eyes are fine.

I has been extremely hot here and I wonder if Beth develops eye irritations when the heat and smog levels rise. Elliott and I have aggravated allergies in this hot weather so it wouldn't be surprising if Beth has the same sensitivity.

It is frustrating that she picked this up. We are still so carefull with her and refuse to take her to public places. I hide her in the office when dropping Elliott off at pre-school and she remains covered and hidden from everyone. We don't let any children into the house (except Elliott, of course!) and we scrub our hands constantly. I am so anxious about any exposure that I work myself into near shaking when taking her to a doctor's office. In fact, her last outing was to the urologist and I would hate to think that the 10 minutes spent in their waiting room exposed her to Conjunctivitis.

I am not overexaggerating about the anxiety of taking her out. I am not sure if other mothers of preemies have it as bad as I do. I surely seem like an overprotective she-bear but the fear of Beth getting sick is so great that it makes it difficult to even focus on the task at hand which might be as simple as picking up a prescription. The few times I do have to pick one up when Daddy isn't home to watch Beth, I dash into Raley's with a blanket over the carrier and hide from everyone. This is difficult because the pharmacists and checkers know us so well now that they want a glimpse of Beth. I do oblige the pharmacists because with all the medicines we've ordered through the pregnancy, my recovery and Beth's time at home, they know about her extraordinary life. And, they are as protective as we are. One of the ladies at the counter kindly but firmly shooed away a sweet grandma who just wanted to see "our precious baby!" ...if she only knew how precious she is.

Monday, June 26, 2006

The Urologist Appointment

Beth's appointment with the urologist was edifying. I learned that the defect she has is not in the sphincter of the bladder because there isn't one. The bladder empties by contracting the muscles that surround it. When this happens, muscles also constrict around the ureter and prevents backing up into the kidney. http://training.seer.cancer.gov/ss_module05_bladder/unit02_sec01_anatomy.html
http://www.health.uab.edu/show.asp?durki=60443 (ignore the discussion about cancer)

In Beth's case and for many babies, the ureter enters into the muscle wall at a lower angle or almost flat and the urine can more easily back up into the ureter and thus back to the kidneys. This back up is what is dangerous. It can carry bacteria which might enter into the bladder (a condition more common in girls than boys thanks to our anatomy).

This condition is similar to the earache problem in young children. Our son had to have tubes placed in his ears to drain the fluid that frequently collects in the Eustachian Tube. The problem is that the angle of the tube is too flat and the fluid can't drain out of it. All of this is related to size. As a child grows, the position of their ears changes slightly and the Eustachian Tube angle points down rather than staying flat. http://www.nlm.nih.gov/medlineplus/ency/imagepages/1092.htm

So back to Beth's bladder problem...Because she is so little and because of her general anatomy, the angle of the ureter is too flat and the urine doesn't completely drain out of it. It creates a vacuum and draws urine from the urethra back into the bladder and potentially up into the kidneys.

The danger is great but it is very likely she will grow out of it. If not, they can inject a sugar based fluid into the muscle wall around the ureter which makes the opening smaller. The theory is that the opening will stay smaller and by the time the sugar breaks down (months or a year), the child will have grown bigger and the angle increased. The other surgery option is the physically reattach the ureter at a greater angle but this isn't something we want to do.

Beth is on constant low-dose antibiotics. While we were concerned about this, the doctor tells me that the dosage is so low that the rest of the body barely knows it is there. The antibiotic concentrates in the urine and by default is thus specific to bacteria in the urinary tract and bladder. She currently is taking amoxycillian but we might change that in six months.

So the question is, is this condition more common in preemies? No one has a conclusive answer for us. I can say this, however. A baby isn't designed by nature to be born prior to 40 weeks. When little Beth was born so early, she had a lot of medical intervention that altered her body's normal development. She also had gravity affecting how her growth. You can see this in the shape of her head. Rather than a nice round head, she is a little elongated because she was always resting on one side or the other. In the womb, she would have moved around, been curled up and often upside down giving her body a chance to develop almost in a neutral buoyancy. I'll bet that many things are little out of alignment. Our hope is that they stay small misalignments as we've found so far.

On a bright side, she has a smile to die for and two cute dimples showing up on her right cheek. One of those dimples is just to the side of her nose. I'll see if I can catch a photograph of it.

Tuesday, June 20, 2006

9 pounds and 4 ounces

Yes, Beth is actually a big girl now. She weighs 4210 grams or roughly 9 pounds and 4 ounces. Despite her reluctance to take the bottle and her supplements, she appears to be thriving. She is getting dimples on her cheeks and her smile is positively electric. I sense the start of a laugh coming on -- film at eleven!

Her urology appointment is this Thursday afternoon so we'll have more information to share about her little defect (vesicoureteral reflux) http://www.emedicine.com/med/topic2838.htm.

Friday, June 16, 2006

Must...Keep...Pumping!



I forgot to write that Beth weighed 8 pounds and 8 ounces last week. My estimate is that she tops 9 pounds today. She recently went through an eating binge where she wanted to nurse every two hours (day and night). This didn't allow for much sleep but it sure bumped up my appetite and added some heft to our girl. We were told to keep feeding Beth at least every three hours since we were discharged in May. She rarely fails to eat at least this frequently.

Beth is on a nice schedule that was ingrained in her by the nurses. She eats and naps just about on a three hour schedule. After her eating binge of the last few days, however, she is busy growing which makes her want to sleep more. We were fortunate to get a four hour stretch of sleep from her during the night. Don't tell the doctors, though. I suppose they would chastize me for letting her go so long between feedings.

They say she might be a bigger eater than a full-term baby and I believe it (although she still hasn't caught up to my copious production). I still pump 2-3 times per day. Moms of preemies grow to hate pumping but it is crucial to continue because if I don't keep the same level of production going by emptying any reserve, my production will decline and possibly stop. There is no safe way to gradually reduce output so we just keep it up until she gets big enough where she takes in the 1400-1600 mls I produce.

Monday, June 12, 2006

Developmental Milestones

We have been asked if Beth will develop like most babies. Unfortunately, we don't have that answer (nor does any parent). We do know there are more risks and that she might show other minor health problems but she is expected to be completely normal.

We have many resources available to us, however. She has a follow up appointment with a developmental specialist in November and the county has assigned a nurse to check with us periodically to make sure she is growing well and meeting some benchmarks. It is up to us to help her catch up with her peers.

Premature babies have weak front muscles and stiff back muscles because they develop in a crib or isolette, not the tight womb which keeps them in a curled position. Because of this, it is essential that Beth strengthen her front muscles and relax her back and leg muscles.

She should never be allowed to "stand" or bear weight on her legs because it encourages her to tighten her back and leg muscles. She gets lots of tummy time so that she can strengthen her neck and learn to coordinate her head movements. She also spends a lot of time curled up in our arms or laying on our chest or head over our shoulder. Beth is already doing very well with her head movements and can easily shift her head from side to side while laying on her tummy. And when held upright, she can lift her head to vertical and hold it for a few seconds.

At 5 months of age, she is clearly behind other babies but if you adjust that to her due date of May 9, she is right on track with other 4 week-old babies. It will be interesting to see if she catches up quickly or takes the usual 2 years that most preemies need to be on track with their peers.

Fever After Immunizations

Beth had a fever on Thursday, the day after her immunizations. We have been instructed to take her to the doctor when her temperature reaches 99.4 degrees. It registered 99.3 degrees when we awoke on Thursday morning. I was quite concerned but agreed to give her an hour before calling the doctor. Sure enough, one hour later it was normal. I checked her every hour for the entire day and it remained 98.4 degrees or less.

When taking a baby's temperature, the easiest method is to take it under the arm called "axillary". However, that temperature needs to adjust up 1 degree to be accurate. I use the actual thermometer we were using in the NICU just to be sure. I back that up with an "ear thermometer" that takes an electronic reading (that is frequently lower than her body temperature). One can also take a temperature rectally but I prefer to spare Beth that invasion.

Beth's typical axillary temperature is 97.9 degrees and both Daddy and I can tell if she has varied from this just by touching her forehead. We also know the color of her skin and which veins on her face are normally apparent. We have spent so much time observing her for breathing patterns, oxygen saturation, heart rate, hunger, agitation...we can read her like a book. We even know which squirms mean diaper change and which are when she is getting hungry.

Most parents get to know their babies this well but may not realize it. We are just highly attuned to her physical well being. Right now, she seems to be doing very well.

Follow Ups for the UTI
We will visit a urologist on June 22 to learn more about Beth's condition. Since her diagnosis, I talked with a mother whose two daughters have the condition; her youngest has a grade 4 defect and the eldest a grade 3. These are pretty severe defects but she has had little trouble with UTIs. In fact, her 8-month-old baby had a fever over 101 degrees on and off for over 3 weeks before her doctors ordered a VCUG. She wasn't even hospitalized! I suppose doctors are less concerned about full-term babies but this seems unconscionable to me.

Tuesday, June 06, 2006

Home Again After Seven Days

We have returned home again after 7 days in the hospital. The first two were most unpleasant for Beth due to the tests and attempts at placing an IV line in every visible vein they could find. She started receiving antibiotics via shots in her leg on Thursday (June 1) and those continued until yesterday (June 5) when we moved her to oral antibiotics.

You would think that a good dose of antibiotics would douse the most stubborn UTI (Urinary Tract Infection) but this is not always the case. It is best to find the specific antibiotic to attack the particular offending germ therefore they grow cultures on an infection to see if they can isolate the organism and test its resistance to various antibiotics.

After about 4 days, the lab isolated Beth’s infection to eColi. This is a very common organism and a few days later, a specificity test showed it was susceptible to about 15 different antibiotics. From those, we needed to isolate which was suitable for a newborn and could be given in oral dosages allowing us to take her home. It seemed doubtful that the doctor would allow us to go home if Beth continued to receive antibiotic shots. We have been fortunate in many ways, however, and found that good old Amoxicillin will do the trick.

Beth received her first oral dose on Monday afternoon and the doctors wanted to watch her for overnight for any adverse reaction. She will receive 3 doses every day for five days while under our loving care at home.

Lab Test: Voiding Cystourethrogram
We also learned that Beth has a small defect in her urinary system which is the cause behind her UTI. She had a VCUG (voiding cystourethrogram ) test to determine if the bladder and its connecting tubes (the urethra and the ureters) are working correctly. The doctor specifically wanted to see if the sphincter between the bladder and kidneys was functioning properly.

Turns out that Beth has a level 2 defect (vesicoureteral reflux) meaning that urine from her bladder does back up into her kidneys. The test was relatively painless but placing a catheter into her bladder was uncomfortable for her (She had three of these during the last 7 days). Once we had the catheter placed (they actually use a sterile NG tube!), we took a wheelchair ride to the bowels of the hospital to inject dye into her bladder and take pictures.
http://www.cincinnatichildrens.org/health/info/urinary/procedure/cystourethrogram.htm (about VCUG)

Beth was a trooper through all of this. She was actually asleep while we started the Xrays but once her bladder was filled with contrast dye, she became rather uncomfortable and sucked madly on my finger until she was able to void. She was placed in a foam bed that held her relatively stable and then rotated from side to side while watched through an Xray. Sure enough, tilting her to the left showed a substantial flow upwards from the bladder into a kidney (I’m not sure if both were involved). The doctor got his definitive result and we promptly removed the catheter and she gratefully peed out the fluid.

There is still more to learn about her diagnosis but apparently this is rather common. The biggest concern for us is to avoid future infections so that she does not develop a kidney infection. With a failed sphincter, any UTI could quickly back up into the kidney. We might be placing her on continuous antibiotics and you can bet Mike and I will be constantly attentive to her body temperature.

She will not get to enjoy baths and her diapers simply cannot stay wet for any length of time. Cleanliness, while always important to us, is even more important now. This condition might resolve itself as she grows up but if not, surgery can correct the condition and requires about a 2-3 day hospital stay. We will likely have additional cultures and tests and she grows. A follow up doctor appointment on Thursday will give us a better indication of what to expect.

We Were Lucky, Though
Looking back, we were fortunate that Elliott brought home a cold. I might not have noticed her slightly elevated temperature until the infection became severe (Daddy was the first one to say she felt warm). As it was, the first urine culture showed only 10,000 cultures (nearly normal) and the second culture showed 100,000. Now this could have been lab error but it more likely indicates that her infection grew very rapidly and we just lucked out by catching it early. As it was, her temperature was normal the same night we admitted. I can’t imagine what might have happened if we decided not to take her in thinking that she licked the cold by herself.

Visits From the NICU
When we arrived at Mercy San Juan and Bree got the IV line placed, word traveled around the NICU. A few of the NICU doctors were treating patients in the Pediatrics ward so when they came around, I said hello and they all wanted to see how Beth was doing. This was especially nice because I learned a little more about what was going on (Beth’s pediatric doctor wasn’t nearly as forthcoming with information) and felt secure that they were confirming what little bits other doctors did tell us. I actually learned more about her condition from our discharge nurse who actually had the same condition as a child and had it corrected in her 20’s.

Beth was also visited by a few other nurses, a respiratory therapist, the social worker, the NICU secretary and a few other hospital personnel. It felt like home at Mercy San Juan and we greatly appreciated everyone’s kind support. Visitors marveled at Beth’s progress and substantial weight gain. Imagine seeing her at over 8 pounds (8 pounds 3 ounces) when she started life at 1 pound and 15 ounces. Seeing the babies grow up is so gratifying to these wonderful professionals. It was an additional treat when I stopped into the NICU just before leaving the hospital this morning. So many nurses and doctors were pleased to see her. I was reminded about when I used to sit by Beth’s bedside in those critical early days, watching another triumphant parent bring in their NICU “graduate.” It seemed that day would never arrive for us and yet, it only took time, love, Grace and good medicine.

More Information
Vesicoureteral reflux. Urine normally flows from the kidneys down the ureters to the bladder in one direction. With reflux, when the bladder fills, the urine may also flow backward from the bladder up the ureters to the kidneys. This abnormality is common in children with urinary infections.
http://kidney.niddk.nih.gov/kudiseases/pubs/vesicoureteralreflux/index.htm

http://www.urologyhealth.org/pediatric/index.cfm?cat=01&topic=155 (describes grades)

http://www.medhelp.org/perl6/urology/archive/4520.html

Saturday, June 03, 2006

A confirmed UTI

Beth has a urinary tract infection (UTI) as cultured by the first hospital. I am somewhat skeptical about this diagnosis given the errors made in the collection (I saw it with my own eyes) but this would explain the low-grade fever she had. She has had no sign of fever since admission on Wednesday but the risk is too great not to treat for UTI.

She had an IV placed on Thursday thanks to the NICU nurses. This line went bad yesterday afternoon and her arm filled with IV fluid in a matter of minutes. It was a painful moment between when I realized she wasn't just crying for food and looked at her arm swelling up beneath the splint. We quickly cut the bandages and pulled off the tape and then yanked out the IV. That was an instant relief.

We are now giving intramuscular injections of antibiotics with lidacain (sp?) because this type of antibiotic is quite painful. Getting this okay'd took about 2 hours and 3 different doctors and a few nurses but we prevailed. She is getting one shot per day.

You would never know she is sick. She is sweet, sleeping well, eating and being cute as a button. A few NICU nurses have visited her and all marvel at how adorable she is.

Best case is that in 48 hours from now (Monday morning) if her urine culture shows no more infection, they will inject dye into her bladder to see if they find any abnormality or infection of the kidneys. An ultrasound of the kidneys yesterday showed they were fine but this test will be definitive. If all is well and the doctors agree she can take oral antibiotics, we could have her home on Monday afternoon. This is a big "maybe" because they are taking no chances with Beth. If any other marker shows inflammation or infection, we have a whole new host of things to check.

Good news is that she has no lung problems and the little cold stayed just that: a little cold. Seems her system might be stronger than we expected so let's hope she licks this UTI and never looks back at another hospital until it is time for her to start having her own babies.

Thursday, June 01, 2006

Back in the Hospital

The cold that Beth picked up has taken a turn for the worse. Beth landed in the hospital yesterday (Wednesday) after her temperature peaked at 99.4 degrees under her arm. That is adjusted to 100.4 degrees which is the baseline for a doctor visit. She has been in good spirits otherwise – eating well and performing her usual antics. She did have two bouts of unconsolable crying...

The hospital stay has been unpleasant and I’ll write more details later. We started at Sutter Roseville where they have a beautiful hospital with private rooms but staff with poor experience dealing with preemies and newborns. After 9 failed attempts to get an IV and 3 failed attempts to draw blood, I began to draw blood on the staff. They tried two catheter attempts as well to rule out a uterine tract infection. I finally told them they could prick her heal to squeeze out blood but that was it. This was done twice and while most lab tests came back normal, one for “inflammatory or infection response” called a CBR came back at 4 when the normal reading is less than 0.3.

Background...We had to go to Sutter Roseville because there was no room at Mercy San Juan. Well, in my tirade yesterday afternoon(although at tired tirade), a doctor called Mercy San Juan (as I suggested) and told them who they had (Because I wanted her OUT of Sutter Roseville). San Juan found a space for us today (Friday) and Beth was transferred at about 3 p.m. Before leaving, they gave her an intermuscular injection of antibiotics.

We arrived at Mercy San Juan exhausted and with Beth in good spirits and a completely normal temperature. However, with the CBR test so high, there is much concern. A nurse tried twice to get an IV going – no luck. I cried and quietly ranted again and they sent up the amazing Bree from the NICU who got the pick-line into Beth's arm when she weighed less than two pounds. Bree applied her amazing talent and managed to get an IV line in this afternoon. She was not able to pull blood. The doctor said we MUST get a blood draw so we can culture it to find out what her infection is about but agreed that the technician will get only ONE attempt to draw.

Exhausted, I have driven home with great anxiety that the nurse will 1) get the blood draw and 2) be able to feed our tired, finicky little girl. Mike just called to say the lab tech got enough blood to perform the culture and the nurse was at that moment, feeding Beth with the bottle. Mike was observing just in case the feeding went poorly.

I am also sick with a sinus infection and complete mental and physical exhaustion. This is actually a good thing because my body will superproduce antibodies and extra nutrients in my breast milk for Beth. I’m not sure what the plan will be going forward but Beth really does seem fine and has a normal temperature. The doctors and nurses tell us however, that the situation can change quickly so it is a blessing that Bree was on duty today and was able to get the IV in so that we can really give her enough antibiotics or anything else that might be needed.

Please pray for Beth’s strength and patience. She is so forgiving and is still flashing wonderful smiles. A doctor from the NICU came up just to admire her after investing so much love and expert care on her while under their watch. I expect we’ll have many more visitors from the NICU which is two floors below Beth’s current location.