Sunday, December 31, 2006
We have hope because of the smiles in our children's faces and the twinkle in their eyes. We have hope because they are healthy and are filled with zest for life. We have hope because they show us so much love, show each other so much love and share their love with everyone around them. Truly we are blessed.
Our goal for 2007 is to give back something of what we have been given.
Thursday, December 28, 2006
All I want for Christmas is my two front teeth, my two front teeth, my two front teeth...
Saturday, December 16, 2006
Julianne didn't live in this world except for the time I carried her in my womb. However her presence generated emotions and love that has made our lives richer. Her spirit continues to feed our souls and while it often makes us cry, all of us agree that life is better because of her existence.
Monday, December 11, 2006
Rice cereal - Yummy
Monday, December 04, 2006
13 Pounds and 12.5 Ounces
She isn't a moose yet and I don't think she ever will be but she is gaining steadily. She was weighed by the doctor's office just last Friday (12/1) when her second Synagis shot came in (for RSV). She fits so nicely into the 3-6 month size clothing that I marvel at her size.
Monday, November 20, 2006
Thursday, November 16, 2006
I took Elliott to Disneyland on Sunday November 12 to celebrate his recovery from the tonsillectomy. In my frantic attempt to get him to take some tylenol, I said "If you drink this I'll take you to Disneyland!" Well, he drank it and I made good on my promise.
Thursday, November 09, 2006
Beth was given a Bayley Scales of Infant Development (BSID) test to measure her mental and motor development and test her behaviors.
Kathy the development specialist who was so wonderful with Beth while she was in the NICU put her through all kinds of fun tests, some of which you can see here. Kathy pulled out a long list of behaviors to see if Beth would complete. These are simple things like pulling a ring towards her to trying to grasp a small object. She also measured muscle tone and strength, verbal skills and cognitive development.
Beth did very well considering she hadn't slept much that day and was a little hungry. She was her happy self and quite pleased to show off her skills. She even managed to grasp a cheerio between her thumb and forefinger -- a skill normally seen in 9-month-old babies.
She rated between 5 months and 9 months on all the skills and averaged out to something like 6 months and 9 days, which is almost exactly her adjusted age. Our hunches are confirmed that Beth is right on track and seems to have a great and NORMAL future ahead of her.
You can see a photo of her being weighed (with my little photo editing to save her future embarrassment). She is currently about 24 inches long and weighs 13 pounds and 2.9 ounces. On the preemie weight charts she is below the 50th percentile but is gaining at a steady rate.
This was a joyous day for us because Joan, Beth's primary nurse at the NICU came to see her. It was such a treat for all of us. You can see Joan hovering over her during one of these tests. The nurses and medical staff there get so invested in the babies, especially those that are there for months and months. There seems to be no way to adequately express our gratitude for their loving and expert care of Beth. But if I were a nurse, I'd want to know how the babies I discharged are doing. So, I try to keep in touch with Joan and send photos to the NICU on occasion. There are hundreds of photos in the NICU and for every photograph, there is a nurse who would beam with pride when telling how well that baby was now doing.
As Joan carried Beth out the car a man walking by said, "what a cute granddaughter you have there." Joan just smiled and hugged her a little closer.
Monday, November 06, 2006
You know life is nearly normal when the family can pose for such a goofy picture. And, this photo was taken at Mike's Halloween office party which indicates we felt confident enough to bring Beth out to meet a few people. Granted we wouldn't let anyone touch her and we stayed well away from groups of people...but the experience was great. So many people followed her progress that it is a real joy to introduce her to the countless Aunties and Uncles who prayed for her almost every day.
Beth had her first Synagis http://www.synagis.com/ vaccine which is for RSV http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm. The shot was quite painful and nearly a 1 ml injected into her tiny leg. We heard from her for 15 minutes afterwards. She cried but spend more time "talking" to us quite emphatically. If I could translate, I'd say she chewed me out for letting those darn nurses poke her yet again. "Oh the indignity of showing my leg and letting some 25-year-old nurse poke a needle...yada, yada, yada. " I'm not kidding about the talking part. Everyone in the doctor's office was giggling by the time I took her out of the exam room. She had been blathering away for 10 minutes before I ventured out and she still let me have it all the way to car. Then she fell fast asleep (thank goodness!)
She will receive this shot monthly (maybe by the end of winter she actually say something intelligible while chewing me out). She gets another influenza booster next week with her 9-month check up.
We are really looking forward to a return visit to the NICU this Wednesday where we will have our 6- month developmental clinic check up. All micro-preemie graduates at Mercy San Juan go through the clinic where they assess the babies development to note any lags. It will be quite interesting and I hope rather mundane when they tell us everything is on track. We will also get to see her primary nurse from the NICU who holds a special place in our heart as one of her surrogate mommies.
Check back in a few days to read about the results.
Monday, October 23, 2006
This photo was taken a few days before Elliott's tonsillectomy. It has been a very difficult week. His tonsils and adenoids were removed and tubes placed back into his ears. Thank goodness Beth is so easy to take care of because Elliott has needed nearly all of our attention.
The surgery went well but recovery has been terrible. Day 3 and 4 seemed the most painful for him and because he is reluctant to take medicine, there was almost nothing we could do to help. Daddy and I spent many hours holding him and trying to take his mind off of the pain. The television has been the best distractor. We have watched the SpongeBob movie at least 10 times and I've heard the Ninja Turtle theme song ... say 20 times!?
A note about surgery should your child ever need a tonsillectomy. Our surgeon elects to keep the mouth very dry during surgery. This lessons the bleeding but makes it very uncomfortable when they are coming out of anesthesia. Have very small ice chips close at hand. Also, the nurse didn't want to give him a pain killer right after surgery until he had enough fluids. I implored her to give him something ASAP and convinced her because I told her how well hydrated he was in the days before. After a shot of Phentenol, he was better able to cope with the sheer pain and fear of coming out of anesthesia.
While at home, an ice pack on his chest seemed to help on days 2-4. Now he does not want popsicles or ice cream and prefers room temperature water. I think the cold aggravates his throat so he will only take very small ice chips (especially during the first hours). A humidifier has helped him sleep and we also raised the head of his mattress to ease drainage.
Today marks day 7 and while he is doing much better, I did not expect him to still be in so much pain. He won't be able to go back to school for at least 3-4 more days. Perhaps I'll keep him home through the rest of this week.
Beth Continues to Gain
On a happier note, Beth weighs 13 pounds exactly! We are thrilled with her growth.
Please enjoy these precious photos of Beth.
Tuesday, October 10, 2006
Solid foods are on the menu now. Here is a photo of Beth trying her first spoonfuls of cereal on Sunday, October 8. She actually did much better than we expected. I seem to remember Elliott pushing more food out and down his chin than was actually swallowed. Perhaps because Beth has experience with supplements of various textures she found this soft cereal to be rather benign. Most of it went into her mouth with a smile (except, of course, in this picture!).
Beth had her first flu vaccination today (Tuesday). She is on the high priority list and thus is among the first to receive the shots. She will have another flu shot in 30 days and she will also receive monthly shots for RSV. Those should arrive in the doctor's office any day now so we'll be visiting our doctor on a very regular basis.
After the way she handled today's shot, I don't think they will mind seeing her again. We had a cute young male nurse administer her shot today. And, I think he fairly fell in love with Beth. She hardly made a peep when he pinched her leg to give her the shot and then when he pushed in the needle and administered the shot, she serenely looked at us both -- nary a tear or cry. I honestly don't think he had ever seen a baby be so quiet. Being her mommy, I could tell that the shot hurt and she didn't really like it but she quickly forgot (or forgave us) and flashed her astonishingly cute smile.
She slept a little more than usual today but has so far been just fine. No fever and no rash at the injection site. Her temperament is sunny as usual and she has been up to her usual antics when getting her supplements. She can really clamp down now when she doesn't want me to poke a dosing syringe into her mouth. It is still so funny to see her squish her lips together while trying not to laugh.
Daddy has located the perfect tickle spot and each night I get to hear her "baby laugh" while Daddy gets her ready for bed. ...Remember those baby laughs? They are like nothing you've ever imagined they would be -- pure sunshine and cotton candy.
Tuesday, October 03, 2006
Beth is a "supported sitter" now. If you hold her arms or give her little balancing help, she can sit upright -- with the BIGGEST smile you have ever seen! Solid foods aren't too far away now. And, for every mom who asks "is she sleeping through the night?" (we all crave those days!)...I am sure she would if I'd let her. However, she still has so much catching-up to do that I wake her up by 4:00 a.m. if she hasn't already done so.
Friday, September 22, 2006
Tuesday, September 19, 2006
Sunday, September 17, 2006
Nearly every doctor from the NICU team was there except for the few who were working that day. Even one on-call doctor scurried over for a quick visit. Many nurses and respiratory theraptists also were there, each one saying how gratifying it was for them to see the babies and children who were the objects of their love and care.
I wonder if they know how wonderful it is for us parents to see them? I expect they do but there is almost no way to adequately express our gratitude for their efforts. My hope is to someday "pay it forward" for there is nothing directly that I can do for each of the nurses and doctors who cared for Beth -- except take care of her and love her dearly.
And in yet another treat on Sunday, during a family outing, Mike struck up a conversation with a young lady who admired Beth. Lo and behold, she had been a super-preemie herself nearly 16 years ago. She had weighed 1 pound and 14 ounces and was born at 25 weeks -- at Mercy San Juan! She was a beautiful, bright young lady and clearly had a joy for life. Her parents must be so proud of her.
Our sweet little Beth will someday be a young lady and I know we'll be proud of her, too.
Monday, September 11, 2006
This cracks me up so I had to share.
Poor little Beth gets 3 supplements, 1 dose of antibiotics and 2 bottles mixed with powered formula for extra calories. She really doesn't like all this extra stuff and as you recall, she used to have a lot of trouble with gagging and choking. She is growing out of that (thankfully) but now she is getting smart. These pictures show how Beth is trying to avoid getting her Poly-vi-sol which is a nasty brown multi-vitamin supplement that stains everything it touches.
Seems she has learned that if she purses her lips tightly, she can keep the dosing syringe out of her mouth...well not really but she sure tries hard. The funny part is that this little bit of rebellion cracks me up and I start laughing at her. This makes her smile and laugh but she doesn't want to open her mouth so she squeezes her lips even tighter. What a kick to watch her brain at work while she tries not to smile and get the offending syringe with the yucky vitamins. Eventually I win and then we get the next faces.
Saturday, September 09, 2006
Grandma was especially excited about the meeting because she has grown so close to the nursing staff who take care of my father. The staff had followed every step of my time in the hospital and Beth's 90-days in the NICU. They provided much needed support to Mom during the months of uncertainty and shared our joy when she came safely home. Needless to say, they have asked nearly every day when they would get to meet Beth.
On Saturday during the "Grandparent's Day" festivities, the manager arranged for us to enter a side gate so we wouldn't have to go into the building and expose her to too many people. An aide brought Dad outside and Mom introduced him to Beth. While Dad isn't always intelligible, he did clearly say "she's beautiful!" I held my tears in but the effect on Mom and I was pretty immense. This is one meeting we'll remember forever. I hope that some part of my father remembers meeting her, too.
As Beth continues to grow, we are introducing her to more family and friends. The effect of meeting her seems almost life-affirming for everyone whose prayers and positive thoughts have helped Beth to thrive. And for Mike and I, each meeting brings us another step closer to normalcy and to healing from our loss and the painful journey we've experienced.
Ah, but she smiles and snuggles into our chest and all the pain melts away.
Tuesday, September 05, 2006
Yes, she is petite but her growth continues at a very steady pace so we aren't concerned. In fact, she seems to be developing motor skills at a rapid pace now. Within the past week, she started holding her head up at a 45% angle while on her tummy, she started holding her bottle, she laughed and is clearly trying to stand. We aren't supposed to let her stand too much because it encourages her to tighten her back up However she now that she has started, she gets very frustrated if you don't let her try.
She is also close to pulling herself to a sitting position. She tries to pull herself forward when in the bouncy seat. The full roll-over isn't far away either so our days of leaving her on the couch are nearly over.
So many milestones are just flying by and we are just thrilled with her progress. Now our joke is that she will be the tiniest walking baby you've ever seen.
We have also taken advantage of this time to socialize her with limited outings. We will continue with this until RSV season starts (and she begins getting vaccinations). So if you are dying to visit and meet her, September and October are good months to drop by.
Sunday, September 03, 2006
I have been following Beth around with my phone for a few days now because I want to try this Audio Blogging feature. I can record anything by calling a special phone number and it shows up in the blog (assuming I follow the prompts correctly). You see, Beth has become a comedian of late. She discovered her voice last week and has made sure that we are all aware of her vocal talents. I swear she is singing scales (about as well as I can!).
Her vocal gymnastics have been mistaken for a parrot.
In any event, this link should open on your computer very quickly and let you hear her chattering away. As you would expect, she stopped as soon as I put the phone in her face but with a little more prompting she let loose again.
Such joy in our house.
By the way, she is taking a good 5-6 hour sleeping stretch at night. I am quite happy with the extra sleep but she still stays close by us with the motion monitor on to make sure she keeps breathing -- which thankfully she has continued to do since we brought her home.
Saturday, August 26, 2006
Friday, August 18, 2006
Here is a video showing Beth in the bouncy seat. Today she gave me her first honest-to-goodness laugh. Gramma says she has heard Beth laugh but apparently she hasn't wanted to share her laugh with Mommy and Daddy until now. This is a low resolution video:
Sunday, August 13, 2006
Most of you know that Mike and I are fanatical bike riders. I rode my bike all through my pregnancy with Elliott but obviously not with Beth. Since returning from the hospital, I have tried to regain some fitness but with very little success. That all might change now that Beth has taken her first bicycle ride. Elliott had his first ride at three weeks but Beth...well we had to wait a while for her. I also wanted to make sure we had both Mike and I to watch her and make sure she didn't do anything scary.
While this might seem insignificant, again this is a milestone for us. We are another step closer to feeling normal and believing that she is 100% okay. It was a significant day for not only did we ride together as a family but we rode with some of our very best friends. We had two bikes with trailers, two bikes with tag-alongs, two solo bikes, and one 6-year-old on his own bike. Total count? Six adults, two boys, two toddler girls, one 4-year-old girl, and adorable, amiable Beth.
Wednesday, August 09, 2006
Beth received the okay from her doctor to venture away on a family vacation in Aptos (near Santa Cruz). We spent a week with family and were spoiled by Gramma. Lots of beautiful sunshine and cool days (relative to Sacramento in summer).
Beth turned 6 months old on July 31 so we celebrated her life, her beautiful spirit and the miracle of her survival. She now weighs 11 lbs and 1 oz and is 23 inches long. Despite being 6 months old, she is more like a 3-month-old physically but her intellect seems closer to a 6-month-old baby. We must remember that she is only supposed to be 10 weeks old right now!
Yes, she is holding her head upright in these photos. She had a Gramma-aided roll-over on Friday. What's this? Gramma pushed the cushion of the couch down a little bit so she didn't have to work so hard to roll over. (Dr. Arab says he won't count that one!) But she is close to doing it on her own. And, she has a three-squeak laugh going. Soon that one will be a full belly laugh.
Tuesday, July 25, 2006
We have connected with youtube.com so that we can more easily share videos of Beth.
This one shows Beth and Elliott playing at home. Notice how intent Beth is on the stack of toy animals. She is very intent on any face placed in front of her. In fact, if you pull away something she is staring at, she will raise quite a fuss along with a high-pitched cry. We aren't sure if she is scared by the sudden change in her field of vision or if she is just mad at being removed from a visual object that pleases her.
By the way, she weighs 10 pounds and 12 ounces!
Sunday, July 16, 2006
She is such an easy baby to care for if you overlook the choking, hospital visits, bladder issues and such! Unlike Elliott, when you put Beth in the crib, she might fuss a little and give little waning cries but she will fall asleep completely on her own. Sometimes she will suck on the pacifier like mad for 2 minutes then calmly spit it out, stare at her reflection and drift off to sleep.
She still eats about every 3 hours during the day but frequently bumps that up to 2 hour intervals. This keeps me very busy because she nurses for 30 minutes, burps for 5 and then plays on her tummy or sleeps until she wants to eat again. Sometimes this routine spills over into the night. For example, a few nights ago our routine went like this:
8:30 p.m. - In the bassinet
9:00 p.m. - Elliott in bed
10:00 p.m. - Mom and Dad in bed
10:20 p.m. - Beth wakes up hungry
12:40 a.m. - Beth wakes up hungry
2:20 a.m. - Beth wakes up, REALLY hungry
4:00 a.m. - Beth wakes up hungry
5:50 a.m. - Elliott wakes Mommy and Daddy and Mommy begs him to go back to bed
6:00 a.m. -Daddy gives up and gets up to run
6:30 a.m. - Beth wakes up hungry
7:00 a.m. - Beth goes back to sleep for three hours while the rest of us try to get the day started
Now, not every night is like that. Just two nights ago, Beth woke up only two times: 2:10 a.m. and 5:50 a.m. She always goes right back to sleep after nursing and a good burp so while it is bothersome to get up and feed her, she is very cooperative about going back to bed. We are so fortunate in this respect.
When I tell others how lucky we are that Beth is such an easy and happy baby, nearly everyone says we deserve it. As I look back on the past year, I think they are right.
Six Months Coming Up
Beth will be officially six months old on July 31. Her adjusted age will be 10 weeks but we are going to celebrate anyway. If luck allows (and the doctor) we will be in Santa Cruz with a few members of our family. I can't often believe what we've been through to get to this joyous point. And yet, every day Daddy and I miss her sister. It will be a bittersweet celebration but I hope that both of them always know they are loved.
Friday, July 07, 2006
He cleaned the was from her ear canals so he "could get a good view". ... Now get this. Our pediatrician is hands down the best in Sacramento. He has a stellar reputation and thoroughly loves the kids. I was surprised, however, when he reached into his pants pocket, fished around and produced one of those loops they use to clean ears. "Do you always carry that around in your pocket?" I asked. Yes, he did clean it before cleaning her ears.
Anyway, he found two ear infections and gave us a 10-day does of Augmentin (http://www.drugs.com/augmentin.html). As of today, Friday, she has maintained a temperature below 99 degrees and appears to be doing just fine
The doctor said this is going to be a terrible winter for colds and flu. We discussed ways to keep Beth safe from further infections being that our son is sick every 4 weeks. He also gets ear infections very often and had tubes placed at 14 months. Beth probably will have similar issues. So, now we have to watch her for ear infections and urinary tract infections in addition to her greater suseptibility to colds and flu.
Makes me want to bar the doors and burrow inside a blanket with her.
Wednesday, July 05, 2006
The doctors admitted us to the hospital the last time we registered such a temperature so I wasted no time calling a doctor. Twenty minutes passed and no return call. I checked her temperature again and it was 100.4 in her ear. I called again and still received no return call. I tried feeding her but she had little interest in nursing -- a strong indication that something was wrong. I was also very alarmed by the limp "ragdoll" feeling of holding her in my arms. By the time I checked again, her temperature had risen to 100.8 degrees. In the twenty minutes between temperature checks, I was already packing her bags and extra clothes for me for a hospital stay. By the time we registered this 100.8 degree temp, I was ready to put her in the car and drive to the ER.
An emergency room is the LAST place you want to take a sick infant but since I couldn't raise a doctor I wasn't going to take any chances. I could, however, be a she-bear and keep her as safe from other illnesses as possible. I immediately told the staff I couldn't wait in the lobby and fortunately they agreed. We were checked in and weighed (good news is that she is a whopping 4500 grams or 9 pounds and 15 ounces) and another temperature taken. They found her to be 100.8 degrees rectally (note to self-- the ear thermometers are pretty darn accurate). While the ER staff seemed nonplussed by her fever, I made sure they realized she was sick and needed immediate attention.
We checked in at 7:15 p.m. and had our first doctor check us at 8:00 p.m. We were moved to another room, a urine sample taken via catheter and then given a small dose of Tylenol. At 9:00 they took chest X-rays. Again, I pushed the personnel a bit and asked them to fit her kidneys in the shot. The tech looked at me incredulously so I started rattling off her reflux condition and that we checked kidneys with the last hospital visit. Whether or not he was trying to shut me up or realized I knew what I was talking about, he moved the plate down a little bit so we could see her kidneys in the image, too.
After we returned to our little room, Beth started to get sleepy and thankfully, nodded off. Another note...if you ever go to a hospital, take extra blankets for the baby and warm clothes for yourself. I always carry a fleece blanket (even in summer) for Beth because they are soft, warm, tactilely interesting and double as a cushion when changing diapers on a hard surface.
Beth's temperature dropped with the Tylenol and her urine culture came back clear although we will have to wait a few days for definitive results to grow out any bacterial cultures. At midnight, the doctor told me we were being discharged. I was stunned. I expected to be admitted given the last doctor visit for a fever. While I was concerned about taking her home, I was thankful to be leaving.
Now 12 hours later, Beth is keeping her temperature below 99 degrees and is eating very well. She is a little fussy but clearly feels much better than yesterday. Turns out that Beth has contracted yet another cold and she started sneezing this morning. She had a slight cough yesterday but not a consistent or "wet" cough to be concerned about.
The ER doctor was much more reasonable than some pediatricians we've had. When the ER doctor wanted to take blood samples, I told her they would never get any blood unless they pricked her heal. A heal prick isn't as reliable or sterile as an IV draw so they can't use it for many lab tests. I suppose the doctor considered our past experiences and agreed to hold off on drawing blood. She also listened to our past history and made a reasonable guess that she had a URI (upper respiratory infection or a cold) and we could safely take her home.
We have a follow up appointment with her pediatrician on Thursday (July 6) morning. In the meantime, she is sleeping and eating well but clearly wants to be held a bit more than usual.
A side note...Holidays are perfect for a trip the emergency room, especially on July 4. If you have a child who likes firecrackers, take them to the local ER on July 4 and they'll learn the lesson very quickly...
Thursday, June 29, 2006
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
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
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
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
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.
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
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.
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://www.urologyhealth.org/pediatric/index.cfm?cat=01&topic=155 (describes grades)
Saturday, June 03, 2006
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
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.
Monday, May 29, 2006
Can you guess which photo is of Beth and which one is of Elliott?
We've been dying to put Beth in this outfit given to us for Elliott by our good friends. While it is a little boyish, Beth does look adorable...but which one is she?? Read the previous entry to find out.
Sunday, May 28, 2006
Beth is on the top photo (yellow background) and Elliott on the lower one. His eyes are a bit more open as this photo was taken at his 8 week birthday. Beth's was taken on May 26 when she was still less than 4 weeks gestational age. It is hard to believe she is really 4 months old based on her birthdate of January 31.
Elliott brought home a cold and shared it with all of us. Beth has a runny nose and a rattle in her breathing when she sleeps. We are watching her very closely because this could be dangerous. So far, no fever and no decreased appetite. Her lungs are very sensitive and any infection could cause damage. In fact, it is possible her lungs will have decreased capacity due to the ventilation while in the NICU but we won't find this out until much later in her life. Keeping her healthy is critical.
We are saying our prayers and keeping a keen eye on her.
Monday, May 22, 2006
The good news is that Beth is growing--quickly! On May 18 she measured 7 pounds and 7.5 ounces and a healthy 19.75 inches. This is comforting given the concern with her bottle aversion. She takes numerous supplements (Neo-sure for Calcium and Phosphorous, as well as Iron and a multi-vitamin). If she doesn't consume her bottle, she doesn't take in the required supplements. I have tried squirting the liquid supplements into the side of her mouth (very small dosages of .3 mls and .5 mls) but this isn't a preferred method given her aversion to anything plastic or latex in her mouth.
She still will take the Haberman bottle but it can take 45 minutes to consume 50 mls. We'll simply have to keep trying other techniques to keep her comfortable and willing to bottlefeed. If she isn't reliable...I'll have to remain by her side for the next year (no trouble really except if I ever expect to resume my consulting work!).
As with all new parents, we are somewhat sleep deprived. She feeds every 3-4 hours during the night and most nights will go right back to sleep after adequate burping. However, she INSISTS on sleeping on Mommy's chest between 3 or 4 a.m. and 7 a.m. It is really very cute; almost as if she misses me and needs to hear my heart beat for that last little time before dawn.
Monday, May 15, 2006
Life with Beth is about as normal as it can be. We are still in shock and have to remind ourselves that she is here and safe. Her bouts of choking are growing less and less frequent. She seems better able to control herself while coughing. She has even shown us she can gulp down a bottle (55-60 mls) in about 5 minutes if she puts her mind to it. However as we add more Neo-sure to boost her calories, she seems less interested in the bottle and would rather breast-feed.
A nurse will come visit later this week and weigh her. We have many additional services at our disposal due to Beth's rocky start. We'll gladly take advantage of each of them. Weighing Beth is of utmost importance to us to make sure she is consuming enough calories.
For now, enjoy these photos and notice how completely "babylike" she seems. We are so pleased with her progress. She is handling noise and extra light very well. She is still a bit less than 7 pounds. We hope she'll eclipse this mark by Thursday.
Tuesday, May 09, 2006
Today is our actual due date. We have mixed feelings about this day but reality is that life with Beth is too busy to dwell on anything. She is healthy and doing much better with the bottle.
Beth weighed in at 6 pounds and ounces at her doctor appointment. She is 19.5 inches long and doing very well. The doctor showed us the preferred way to hold her when she is coughing and stops breathing. He also told us that she needs to hold her breath during these episodes. Her body is actually protecting her lungs from any fluid going down her windpipe so we should just let her hold her breath until she is ready to breathe. This makes sense now. Our first instinct is always to get her breathing as quickly as possible but as each episode gets less severe, we can see that her body is starting to develop its own timing and protection mechanisms. If she stops breathing for too long and really turns blue, then we know it is time to intervene.
traveling with a preemie is nerve-wracking. And when I say travel, I mean just a 20 minute drive to the doctor and navigating away from curious eyes. It is terrible to say this but we just don't want the average person poking their head into her carrier. I cover her with a blanket but her little coos are irresistible. I have resorted to carrying her up the stairs to avoid elevators. The doctor also reminded us to stay away from crowds and limit access by children. However, Elliott is bringing home all kinds of germs despite is best efforts and hand-washing. It is recommended that she have limited exposures for 3-6 months. He will also give Beth vaccinations as RSV which is a highly dangerous respiratory infection for babies and especially preemies. In the average adult and child, RSV seems like a cold but to Beth, it could have dire consequences. These vaccinations will start in October because RSV season runs from November to May.