Friday, March 31, 2006

No More Nasal Cannula

They have completely removed Beth's nasal cannula! She has had no brady's since March 22 and she is only on room air with 1 liter of flow. Given how well she's done, they nixed the cannula in the afternoon. Everything remains close by...just in case. Including the tape on her cheeks.

The respiratory therapist told me that Beth is the "poster child" for how a preemie's progress in the NICU should be. We have been so fortunate that she's not contracted an infection or any other major complication. One mom told me that her twins (born at 24 weeks) had weathered 8 surgeries between them. I am so thankful we had the extra two weeks in utero for Beth. God and modern medicine worked a miracle keeping her inside. Each day I am more awestruck that Dr. C and Dr. H managed to keep infection at bay and keep the contractions under control. There was no medical precedence for what Dr. C. tried to do. Okay, I'm saying his name on the Internet...Dr. Jeffrey Cragun. You have no idea how grateful we are to him for taking the chance and believing he could save Beth's life.

For a bit of the history, Dr. Cragun is my OB-Gyn who was with us on December 11 and on December 16 and all those early weeks in the Mercy Folsom Hospital. Dr. H. was my doctor for the final 2 and half weeks at Mercy San Juan. Both doctors are talented and skilled but we owe a special debt to Dr. Cragun for taking a chance when there was scant medical protocol for saving a pregnancy where one twin's sack ruptured so early. A gaping hole will exist in our hearts forever with the loss of Julianne. But God blessed us with Beth and clearly wants her here in this world.

Wednesday, March 29, 2006

1915 Grams!

A Big Girl!

Beth is amazing us with substantial weight gains. She now weighs 1915 grams which is 4 pounds and 4 ounces. She is on 1 liter of air flow through the nasal cannula and only room air. She has not had a brady since March 22.

When can she come home? She has to be free of bradys for 1 week and she has to take all her feeds via bottle or breast. It appears we aren't very close to the second milestone. She is happy to receive her milk via gavage feedings. My previous entry covers much of the process of learning to nurse which is more of a bonding experience right now. Yesterday I held her for almost two hours after our "nursing" session. She slept so peacefully and without any apnea or bradys. She desats to the 70's on occassion but quickly brings it back up on her own.

The nurses tell me they don't chart apnea or bradys that might happen when she is being maniputed, medicated or otherwise bothered. So even if she does dip, unless her heart rate truly plummets on its own, she is credited with just learning to cope with stress.

We don't expect her to be home before her due date of May 9 but if all goes well, we might have her in the house sooner. On Saturday, Elliott ran up to the car when I returned from the hospital and asked if I had brought her home. He says a prayer for her (completely spontaneously) at night and celebrates every milestone with us. Yesterady he wanted to decorate his room for her 2-month birthday party! We celebrated again with an ice cream cake garnished with M&M's and 2 candles.

Learning to Nurse

This blog entry is focused on our progress in teaching Beth to nurse. Some readers might be uncomfortable with it so this first paragraph is my disclaimer. If you’d rather not hear about the intimate details of nursing, you might want to skip the next paragraphs. In sum, Beth is sometimes interested, sometimes not. However you can’t deny that trying to nurse is a nice bonding experience for both of us because Beth is at her most alert during these times. She warms our heart with her adorable facial expressions as she rolls her eyes, puckers her mouth and sticks out her tongue as if licking that last little bit of sweet candy off her lips.

About Nursing
Preemies need to learn how to suck, swallow and breathe. Apparently this isn’t as easy as one would expect. Beth and I have been working on nursing for over a week now. To get started I first have to use the pump to empty my milk. I can’t have anything left over because I am truly a high-producing dairy cow when it comes to feeding a baby. For example, Beth receives 37 mls eight times per day. Her total daily intake is less than 300 mls per day. I produce about 1200 mls per day. I use a breast pump every 3-4 hours to empty as much as I can so that my body will keep producing as much as Beth will need when she is nursing at home. Needless to say, Mike and I invested in a chest freezer which can safely store all this extra milk. Frozen milk can keep safely for 6-12 months in a chest freezer and 3-6 months in the typical freezer most of us have in our kitchens.

We have acres of extra milk but I won’t be able to donate it to the breast milk bank because of the blood I received after delivery. This breaks my heart because I know there are babies who could use the milk. Additionally, mothers of preemies produce a milk higher in fat and nutrients that is especially needed by our babies of low birth weight. The human body is truly amazing.

The process of teaching Beth first starts with getting her to latch on. This is the difficult part. Her mouth is not very large. If I had to estimate, I’d say she could fit my finger in her mouth but not my thumb. A baby needs to pull the entire areola into her mouth to get a good suction. Beth can’t fit the entire areola into her mouth, let alone get it far enough back into her mouth for strong suck. She is getting strong in clamping down – OUCH – and for moms who have nursed, you know what this means. I get an occasional wake up call to pay attention. When my son used to do this, I keep my pinkie finger close by and would quickly slip it into his mouth to break the suction and protect myself. With Beth, there is no extra space to do this and I’m nervous about trying to put my finger in her mouth anyway.

A baby can be coaxed to open her mouth by tickling her lower lip and chin. Beth sometimes responds to this but frequently she is very sleepy and only wants to cuddle. This is fine with me and I can sit for 1-2 hours holding her this way. However, the time will come when we have to get serious. I have found that her most alert time is the best to try nursing. She is often awake at 10 a.m. and 8 p.m. which is just before her feeding times (2,5,8,11). If I can catch her when she is wide-eyed and responsive, we have the best chance getting her to pay attention for 5-10 minutes while we try nursing.

The nurses have been trying to get her on the bottle, too. So far they’ve had little success. She has taken in about 2 cc’s but then loses interest or strength. Some nurses tell me she needs to be feeding better now, others tell me not to worry for 2 more weeks. In any event, I have to believe that when the time comes and if we hold a feed for an hour, she is going to show substantial interest in getting food from a bottle or from nursing. And if it doesn’t show up in some form, she’ll let us know about it.

I have tried getting her interested by rubbing a few drops onto her lips and tongue. The first time I did this she opened her eyes a little wider and flicked her tongue about as if interested in finding more. I hope this trick will work more in the future. One time I didn’t fully empty myself and Beth did get one good mouth full. She came up sputtering and coughing and gave me a clearly indignant glare. ...ah this one has character.

I know she is progressing by the little “flutter” of her mouth. I can also feel her tongue occasionally work back and forth and she tries to create a seal and then suck. I don’t worry about fanning her lips open yet as I figure it is most important to get her to open up wide enough with out worrying about the configuration of her mouth. Mercy San Juan has two lactation consultants who are willing to help but rather than rush the process right now, I prefer to just enjoy these early days without any pressure. I can’t wait for the days when she is home and nursing full time. I have fond memories of falling asleep with Elliott after he nursed and I am looking forward to the same motherly bliss with Beth.

Sunday, March 26, 2006

The Magic 4 Pounds

Mike and I had a date with Beth on Saturday night and she rewarded us with hitting the impressive four pound barrier (still smaller than a sack of flour but a giant in our arms). She also was getting a sponge bath when we arrived so we clumsily jumped in to help. It was a quiet evening in the NICU so we held her and also worked on nursing. There can be nothing cuter than a tiny baby's mouth and eyes as she experiences new sensations.

Exact weight is 1857 grams! ...over twice her birth weight and still so incredibly tiny...

Friday, March 24, 2006

Development Information - Infant Massage

I spent some time with the developmental specialist again since Beth has clearly reached a new cognitive and physical level. She is less affected by external stimuli, or so we thought going in to this day.

The DS (developmental specialist) was going to work with me in giving Beth a massage. She received one yesterday and according to her nurse, was a complete “ham” through the process. She smiled and happily surrendered her arms and legs to gentle stroking. No massage oil here, just light continuous strokes that help her lengthen her limbs. The DS also uses imagery in her mind to send a calm feeling to Beth.

Now, you might be skeptical but I’m not. I used hypnotherapy in the quest to get pregnant and you can only imagine how I relied on it during the intense and long stay in the hospital. Some of the toughest periods were overcome with the help of mental focus (and Mike’s, my Mom’s or my hypnotherapist’s broken knuckles). I also spent many hours by Beth’s bedside, cupping my hand over her head and focusing on good health, gradual development and love. When the DS started talking about imagery it was clear that she gets many incredulous stares but I was right there with her.

Unfortunately for us, the day I was to learn infant massage two babies in our little room were having much difficulty and being intubated. All of us could feel the tension and uncertainty and I’m quite sure this contributed to Beth’s agitation that day. Rather than massage her, we both laid hands on her body and head and cupped her feet so she had good boundaries. We then set covered sand bags around her sides and feet and worked on quieting her down.

Many of you have heard or seen babies show signs of stress, well a preemie is even clearer at sending these signals. Books say that looking away or yawning are early signs but I’m not sure these apply to Beth. She yawns frequently and her eyes now slowly scan the room and people attending to her. When she is stressed, her color immediately turns red (given her still immature skin, the changes is startling), she grimaces and spays her fingers out. Her arms also flip wide open (as in mature babies) and she kicks her legs out straight. With Beth, there is also the ever present “ding” of the desaturation monitor telling us she isn’t getting enough oxygen. A few weeks ago, she would also start an “event” and stop breathing while her heart rate dropped.

The DS told me some interesting facts about infant and preemie development. Full-term babies develop from the head down. Remember those floppy heads and their gradual ability to hold their head steady, then lift it up? Babies then gain control of their arms and hands, their backs strengthen so they can sit up and gradually they learn to stand. In a preemie, development is opposite. They develop in the womb from their feet up and gradually gain strength and coordination. When out of the womb this means that they can’t pull their limbs in to comfort themselves with self-created boundaries. Beth’s startle reflex causes her limbs to go rigid and she can’t easily pull them back in. Her backside is stronger than her front so the arms flop open and her legs shoot out. I felt her little calf muscles and they are stiff as rocks (perhaps a good climber??). If you look at some of the early pictures of her, she is laying almost flat because she had no ability to bring her limbs into that typical fetal crouch also called the “leapfrog” position.

We’ve learned that this need for boundaries is especially strong in Beth and while we thought she was coping better, our experience on Friday reminded us that in times of stress – even a little elevated noise level – she needs extra support with sand bags around her sides. It was also a tough day trying to nurse so instead we just did some kangaroo care so she could feel my skin and hear my heartbeat.

I may have mentioned how knowledge of preemie development and coping ability surely must apply to autistic children. For some reason, there is a lack of brain ability to cope with extra stimuli. The DS confirmed that it is a similar response and much of the knowledge about preemies extends to autistic children.

Tuesday, March 21, 2006

3 pounds 12 ounces

Today was our first day nursing. Well, Beth didn't really nurse and we didn't expect she would be able to. It is really just an opportunity to go through the motions until she learns to suck, swallow and breathe. This was a very rewarding time for me especially when you consider that tomorrow she will be 7 weeks old -- roughly half way through her expected time in the NICU.

Beth is too little to respond like most babies do for nursing. When rubbing her lips, she did start to open a little bit but her mouth is so small she can barely open wide enough. She did suckle a little bit and got a few of the nursing actions (Mom's will know what I mean). After 5 minutes she was just too tired and uninterested in trying anymore. All was well, however as she settled in for a good 45 minute nap in my arms. This time she was looking up at me so I could see her face (unlike when I kangaroo her). Her eyes are clearly blue (as we would expect). Her hands continue to fascinate me because her fingers seem so well coordinated and able to grasp at clothing and blankets and hold my thumb so firmly.

All is well today. Mild bradycardias (again while I was holding her). Her weight gain is good (30 grams yesterday). She will receive more caffeine tomorrow to adjust to her new weight. Remember that the caffeine is used to keep her brain alert enough to breathe.

She moved into a new isolette not because she was so big but rather...she pooped all over everything! Good to know her system is working so well.

Monday, March 20, 2006

Weaning Oxygen

These are the exciting days as Beth is gradually weaned from Oxygen. She has already established 28% Oxygen flow as her preferred amount. This is delivered in a flow rate of 5 liters per hour. In the past few days her flow rate was reduced from 5 to 4 to 3 to 2. At two liters, Beth threw in the towel. She was fine for most of the day and then started to have A&B's (or bradys). She was bumped up to 2.5 liters where she seemed to be quite comfortable.

Today I arrived to see her Oxygen percentage also reduced to 21% which is room percentage. While holding her (and changing her diaper) she needed an increase in Oxygen because she keeps desaturating which is a sure path to an event. This is a delicate balancing act I am learning. The entire medical team work together to keep her at the lowest possible rate and flow. Years ago babies were left on respirators and Oxygen support for long periods without this type of agressive weaning. Consequently, many preemies were left blind or with eye damage from the Oxygen effects on the developing retina. Beth seems to be on a very good track and is not likely to have any long-lasting effects to her vision.

Her feedings are continuing to rise. They expect to give her 33 mls every three hours today and will increase that to 34 mils every three hours. Her milk is augmented to be 24 calories per ml (or was that ounce). The extra calories are critical. Apparently when they first start to bottle feed, one session nursing takes up all the calories a preemie consumes during that feeding. This is why they will only give her one bottle feeding per day until her weight and strength reach a certain level.

Beth's weight is 1660 grams which is almost 3 pounds and 11 ounces. In a few more days, she will have doubled her birth weight.

When is she coming home? We still have a long way to go. They tell us to plan on her original due date of May 8. Yet other nurses speculate she might head home early given how well she is growing. She will have to be brady-free for 1 full week before a trip home is even considered. She also needs to be able to bottle-feed or nurse without any problem. We don't know if we'll need monitors. So many uncertainties remain. We are just thankful that the most difficult days appear to be over.

Sunday, March 19, 2006

Beth Meets Grandma

Grandma was able to hold Beth on Sunday 3/19. It was a scary moment for her when she experienced one of Beth's famous "bradys". Beth hadn't had a brady for 3 days but decided Grandma should experience one just so she'd appreciate her more (is this even possible??). After settling down, Grandma had a wonderful visit and Beth treated her to yawns, bright eyes and reaching up to her face. It was a treat for all.

Friday, March 17, 2006

Over 3.5 Pounds!

Beth now weighs 3 pounds and 9 ounces. It is hard to believe she is growing so quickly. Now that her numbers are so "high" the doctors talk in ounces rather than grams.

She is now receiving 31 mls of fortified breast mik in 1.5 hour feedings and they will gradually compress those feedings. Her oxygen flow is down to 3 liters per hour and the percent oxygen is ranging from 25-28%. She had always hovered at 28-30% so she gets another gold star for lung development and strength.

I am still unable to visit as my cold has progressed even further. Not being able to visit rips at the core of a mother's heart. It has been difficult enough just to get to this point and leave her in the NICU. Now that I have been able to hold her, ever motherly instinct tells me I should be there. I'm sure every parent (I know Mike feels this way) experiences this while their child is in the NICU. Once you get over the shock and fear of seeing a tiny or sick baby in an isolette, then a massive protective instinct overpowers every waking (and sometimes dreaming) moment. It is almost like a vortex lives in the NICU, drawing every thought and all your energy into its yawning center.

Oh, the celebration we'll have when she is well enough to come home.

By the way, I've cornered the market on fresh oranges so don't try to buy any if you live in Folsom.

Wednesday, March 15, 2006

Premature Eyes

Beth had her eye test this morning and the report is that her eyes are premature. This is result is a bit misleading because they really can't see much at this stage. They want to see premature eyes because that means the O2 hasn't caused abnormal growth or scaring during development. Thus a "premature eye" is actually normal for her adjusted age...32 gestational weeks.

She has gained weight again and is now 1510 grams which is 3 pounds and 5 ounces. Her feedings are being compressed to 1.5 hours since she tolerated the first adjustment to her feeding (from continuous to 2 hours feed and 1 hour rest). I was very excited to see Beth yesterday because in discussions with one of her doctors, he said we could start recreational breast feeding (sounds like fun?). Unfortunately, by the time I got to the NICU and started to prepare, my throat got scratchy and since Elliott, Mike and Grandma are sick we decided it was too risky for me to hold her.

Today is the same situation and much to my disappointment, I wont' be going in for a visit because I might be getting sick. I am often asked if a visitor can wear a mask in the NICU. While it might be possible in other hospitals, the nurses and doctors at Mercy San Juan say if you need a mask, you can't visit. It is hugely disappointing to not be able to visit our little girl. Mike has been sick twice during her 6 weeks of life outside the womb and unable to visit for almost 6 days. We can only console ourselves with the knowledge that she is in good hands and is now quite comfy and secure.

Growth Brings Security
With her increasing size and maturity, she is better able to regulate her body temperature. Most days her temperature is 97-98.6 degrees. Yesterday she registered 99.1 and the nurses commented that she might soon move to an open isolette. If she can tolerate the sound and light, it will be fun to have her in new environs because we'll get better photos and it will be easier to change diapers and take her temperature. This change would also signify a new era in interaction. She'll be more aware of her surroundings, more alert and we'll see her personality emerge (although the nurses will tell you they already know her personality...). At 10 a.m. this morning, the doctor reported that Beth had no apnea events since 2:00 p.m. yesterday. She even tolerated her eye test without an event (a mild desat but good breathing and no heart rate drop). We are very proud of her. I hope that I avoid getting this cold so I can visit tomorrow (Thursday). Otherwise, she might be a 4 pounder by the time I get back in!

Holding Beth
One of my best birthday presents was holding Beth for over an hour on Sunday. One of the nurses took this photo for me. You can see the corner of her isolette to my right. The feed pump is just below my shoulder hooked to the upright pipe. On the shelf behind me are a computer screen which relays HR and RSP, an oxygen saturation monitor which also relays HR, and numerous connections for Oxygen, power, and heaven knows whatelse. A red stethoscope hangs close by. A "bag" for manually giving oxygen stands by the ready (not often used on Beth). There is a phone so we can talk directly to the nurse at her bedside when calling from home. She has a log book that is bigger than my favorite novel (and to think she isn't even half way through this journey). Beth has about half the number of "leads" hooked up to her these days. When she first arrived there seemed to be more connections than space on her body. But each day she is freer of intervention and our hopes and dreams seem to be coming true.

She has a standard pattern when being held. First she is wide eyed and active for 10 minutes. She looks up at me and tries to move her head. She wiggles her fingers and reaches up toward my face (she is always laying with her chest against my skin to maximize skin contact). She can reach her entire arm up towards my chin and her fingers strum against my neck. During this time her heart rate is a little higher and she sometimes desats a bit. Feeling her fingers is so cute and since her fingernails can't be cut, she has actually scratched me with her tiny nails!

Eventually her eyes get sleepy and she falls fast asleep. This is where we get into trouble; Beth falls so deeply asleep that her brain forgets the breathing part. I've learned to recognize these signals however. All of a sudden there won't be any twitching or mouth movements and sure enough, the O2 alarm beeps and her HR starts dropping. I ususally notice it at 120 bpm and by easing her down into a horizontal position, she'll wake up enough to get her HR going before it registers as a bradycardia. When I do change her position, she is often fused into the exact position she was on my chest: right arm tucked by her chin and her left arm pointing up to my neck. It is a comical sight, almost as if someone cast her in wax and laid her into my arms. As soon as she wakes up enough to get her heart going again, I put her back up on my chest and she settles back into her nap -- often in the exact same position she started in.

Sunday, March 12, 2006

One Apnea in 24 Hours!

For my birthday present, the doctor called to tell me Beth had one event in the past 24 hours! The doctor was so cute, when she called she said "I wanted to wait until you got here but I just couldn't hold back the good news!". This is the type of doctor you want in situations like this. All of the doctors take such a personal interest in the NICU babies. We are blessed and fortunate that she is loved even when we can't be there.

3 Pounds!

On March 11, Beth weighed in at 1360 grams which is three pounds! How amazing to think she has gained over one precious pound since her birth on January 31. We are truly lucky as many babies have trouble taking their feeds but little Beth eats like a horse! She is up to 8.5 mls per hour on a continuous tube feed. You can see the tube now placed in her nose which allows her to work her mouth and make those cute squeaks. She is also smiling quite frequently although the books say that's gas. If you have a broadband connection, you can jump to my other webpage where I've stored the videos of Beth. I'll load another one today where you can see her smile in the first few seconds of the video.

Building Blood Cells
Beth received Epogen (EPO as it is known to many athletes) which helps build her red blood cells. She is almost in need of a blood transfusion because her hematocrit shows borderline counts but the doctors are reluctant to transfuse her. Why? Again the discussion among doctors and respiratory therapists is that she is showing an increased count in reticulating (sp?) blood cells meaning that her body is finally getting the knack of building her own. If she is transfused, we might lose this ability and put her back to square one. Right now it is a waiting game to see if her system can get on top of the game by building all the red blood cells it needs to effectively move oxygen through her lungs.

Infection Concern Passed
Earlier in the week there was some concern that Beth had an infection due to a positive indication in a blood draw. However all other indicators were normal so the doctors took a chance and held off giving her antibiotics until a second blood culture could be taken. Sure enough, she showed negative on the second test indicating a bit of contaminant entered the sample, not her. I found this very interesting. It seems there are two general classifications for a "positive" test. Beth had the one that typically indicates skin bacteria. The doctors are so careful and thorough that rather than jump to conclusions and start giving antibiotics, they could speculate where the contamination occurred, check other indicators (white blood cell count, red blood cell count, A's and B's, and body temperature) and make an educated guess that she was fine. Again, the benefit of multiple doctors is that they share knowledge and develop the best treatments. I've heard the doctors in deep discussion with each other, nurses and the RTs and I'm hugely impressed by their collective commitment to providing great care. ...very little ego involved in the NICU.

Missing Two Days Visits
Poor Elliott was ill on Thursday and I couldn't get in to see Beth. Daddy instead stopped in after work and held her. I also didn't visit on Friday because I needed to make sure that whatever illness Elliott had, didn't make its way to me. By Saturday I felt fine and today (my birthday), I'll visit again and hopefully get to hold her. She was a bit too sensitive having a few A's and B's yesterday so the nurse wanted to leave her quietly asleep in her isolette.

ROP Test Postponed
The ROP (Retinopathy of Prematurity) test has been postponed to Wednesday.

Saturday, March 11, 2006

Elliott - A Big Brother

Everyone knows Elliott is a loving little boy. He is so thrilled about his baby sister but can't stand not having her home. He always talks about her and celebrates each triumph with Mommy and Daddy. He says prayers for Baby Beth and literally jumps with excitement whenever he talks about her.

Tuesday, March 07, 2006

Daddy's First Hold

This picture shows Daddy with his first chance to hold Beth. It was really wonderful. We both held her for a while but she seemed most content in the safety of Daddy's arms.

Beth weighed in at 1210 grams (roughly 2 pounds and 10 ounces). She is very strong these days and more alert than we've ever seen her. Still lots of apnea and bradycardia but often times she merely "desats" (lower oxygen levels) and then her autonomic nervous system kicks in and her respirations increase.

Link to Movie Files

By clicking on this above link, you should find a few movie files of Beth. Unfortunately the visual quality is poor (I'll try to edit them soon to lighten the images) but it is still wonderful to hear Beth's little sounds. She is squeaking and seeming more like a little baby each day. Contrary to the instructions on the page where the film files are hosted, you might be able to simply click on the film files and your windows media player might launch the video. I don't recommend this with a dial-up account due to the large size of the files.

Friday, March 03, 2006

A Very Good Day

Our little girl appears to have regained her strength today. At 11:00, she was moved back onto the nasal cannula and I was able to hold her for 45 minutes without event. This was quite remarkable because the last two times I held her, she dropped into A&B's after about 25 minutes. The witching hour came and went and she was still blissfully tucked into my shirt. This time, she didn't move at all. After the few minutes to get her settled (her eyes were wide open), she tucked her right hand under her ear and zonked out.

Remember those days when holding a baby and you were too afraid to move for fear of waking them? Thank goodness Beth is so light because I really can't move when holding her. Everyone in the NICU treads lightly when Beth is out of the isolette because she has proven to be exceedingly sensitive to noises and movement. Given this, I didn't dare shift my arms or alter her position. I am so weak after my long hospital stay that it was a real feat to hold her for so long.

Beth also behaved herself while I changed her diaper, HURRAY! Every time I change her diaper, she stops breathing so I was really getting a complex. However today she kept her cool and I was able to clean up a real mess and get the diaper on without it looking like a chef's hat hanging on her bottom.

Ultrasound Okay
Today was her 4-week ultrasound for her brain and it the results are good. They check for bleeding in the brain (which surprisingly isn't as alarming as it might sound). She has had three ultrasounds that are perfect. We are very thankful for this.

Her ROP test did not occur today and instead will take place on March 8.

Weight Gain is Good
Beth is up to 1160 grams which is roughly 2 pounds and 7 ounces. They are switching her feeds to be continuous (they were feeding her over a 1 hour period). The doctors theorize that when her stomach is full, she has less lung space and this might contribute to the apnea. We are also hoping that with the nasal cannula, less air will go into her stomach causing less discomfort and less apnea. There are constant adjustments to her care to find the best combination at that time.

Placement is Everything
Much praise goes to the behavioral therapist who has outlined strict procedures for handling Beth. With her guidance, we've circulated the word that Beth is temperamental and doesn't like too much stimulation. "Kathy" also found extra snugglies and aides to give Beth distinct boundaries so she feels less vulnerable. Her nurse today placed her in a larger snugglie and rolled her back into the pocket so that Beth looked just like she would in the womb. In this new position, she hunkered right down and feel fast asleep like she did while I was holding her. I have a much better understanding about babies now and realize that most feel safe in this tight cocoon.

When she is resting so easily, it helps us to relax at home knowing that she is safe, warm and loved.

Wednesday, March 01, 2006

Two Steps Forward. One Step Back.

We have had a little setback in the last two days. Beth started having lots of A's and B's (apnea and bradycardia) on Monday night. By the morning, she was back on the CPAP machine and she had a lot of yellow secretions suctioned from her nose. We were very concerned and disappointed at this step back but the nurses and doctor assured us there was no reason for alarm.

Naturally, we were very sad that Beth wasn't doing so well on Tuesday. When I went to visit, she just seemed less active and her color was poor. She also had two substantial A&B events which sent me into a tailspin. I left feeling deflated and very scared that she might have a serious illness.

As of today (Wednesday 3/1), the cultures are not growing which suggests she does not have an infection. It will be another 24 hours before they can rule out most types of infection. She is having a little less "gunk" in the last few suctions so that is encouraging. Her temperature is also consistent, staying in the range of 97-98.5 degrees.

I had quite a discussion with one of the respiratory therapists (RT) who has been working with Beth over the last few days. He thinks the secretions are nothing to be alarmed with and in fact, feels the A's and B's aren't very bad. She frequently resolves them herself (meaning no one has to rub her back to jump start her breathing). Yet, when she has a substantial brady, she really drops hard and her heart rate goes up and down numerous times. This is normal in a preemie of her age, he says. In fact, the entire staff are so non-plussed by such events that I can't help but be less concerned as they non-chalantly watch her rate, tease her for showing off and then make minor adjustments to equipment, positioning and flow rates.

The doctor noted that she is having no more events on the CPAP than with the nasal cannula and discussed this with the RT. He and I talked about the option to put her back on the nasal cannula and he recommended a rotating plan where Beth gets a few hours on the nasal cannula to work up her lung strength and then a few hours on the CPAP to rest. The plan seems logical to me especially given how tired she looks right now. It just seems like she has pooped out. She is fighting the nurses less and sleeping more that usual. Perhaps the three days on the nasal cannula was too much.

One other point of evidence for this is her increased sensitivity (discussed on the previous blog entry). Either she is sick and thus easily annoyed or she is tired and over stimulated (or a combination of these).

On the positive side, she is still gaining weight -- now 1100 grams or 2 pounds and 7 ounces.

ROP and Ultrasound
Tomorrow (3/2) is an important day as she will have another brain ultrasound and an eye scan to check for retinopathy of prematurity (ROP). ROP is the result of excess oxygen which causes new blood vessels to grow in areas they shouldn't be. Because Beth was so small, she has a high probability of having a degree of ROP but many cases do resolve themselves. There are other therapies to correct ROP but we are hoping she avoids developing the condition altogether.

Four Weeks Old
On Tuesday, Daddy, Elliott and I celebrated Beth's 1 month birthday with peach pie and a candle perched on top. Despite the occasionally setbacks, we have much to be thankful for as she steadily grows and gives us many reasons to smile (and chuckle at her antics).