Thursday, December 31, 2009

An Ending, and a Beginning

I can't believe it's New Year's Eve, 2009, as I sit here and type this. In no way was this past year anything like we expected. We certainly can't complain about the outcome, but all in all, we've lived a lifetime of stress, anxiety, worry and fear in the last ten months. Tonight, we will celebrate the end of this era with relief that all is well, and look forward to a more normal life (we hope) in 2010. We quietly marked the passing of Andrea's 10 month birthday on December 26. In all the celebrating, I never got a chance to post on the day. On December 25, we amazingly celebrated her first Christmas. Santa and her family were very generous.

I haven't posted much in December, because we have been blessed with a relatively normal month. Andrea had her 9-month check up at the beginning of the month, and has been getting her required vaccines slowly ever since. As I posted earlier in the month, she's been eating cereal every day, and we're going to start adding vegetables next week. Since there's nothing much to report, I decided to end the year on a December photo shoot. I'm showcasing a bunch of pictures of Andrea from the past month, along with some quotes. If you've been a blog follower, you know I love my quotes!

I return to work on January 4, nearly a full year after I ran out in a panic because of the pregnancy complications. I will continue to post as events warrant, and I hope people will continue to follow Andrea's story. Comments to the blog, and emails to me (tori.zimmerman@gmail.com) are always appreciated.



“In all things it is better to hope than to despair”
Johann Wolfgang von Goethe





“Dum spiro, spero (Latin), "While I breath, I hope"”
Philemon, Latin Proverb




“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.”
Dale Carnegie




“What would life be if we had no courage to attempt anything?”
Vincent van Gogh




“He who has health, has hope. And he who has hope, has everything.”
Proverb




“Hope is the pillar that holds up the world"




“Hope is knowing that people, like kites, are made to be lifted up”




“Hope arouses, as nothing else can arouse, a passion for the possible.”
William Sloan Coffin




“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up.”
Anne Lamott




“I do the very best I know how, the very best I can, and I mean to keep on doing so until the end”
Abraham Lincoln




"The difference between the impossible and the possible lies in a person's determination."
Tommy Lasorda




“I count myself in nothing else so happy
As in a soul rememb'ring my good friends."
- William Shakespeare




"You can do what you have to do, and sometimes you can do it even better than you think you can."
Jimmy Carter


Happy New Year to all.... with all our love!

Friday, December 11, 2009

Cereal!

On Wednesday, Andrea had her rescheduled "well-baby" doctor's visit, along with her monthly RSV vaccine. We are pleased to report that her development continues to be normal, with her developmental milestones being reached at the tail end of the accepted ranges. One thing we had postponed for a while was the introduction of solid foods. It was the advice of the NICU nutritionist that we hold off until six months or so. (Doctors recommend introducing solid food between 4 and 6 months). Andrea's well-baby visit was her 9-month check up, but she is developmentally 6 months. So, Wednesday night she got to enjoy some Gerber Rice Cereal at dinner. I have captured the moment in today's picture. She seemed to enjoy the experience, and ate pretty well. Last night, she had more, and devoured the whole bowl, except for what wound up in her hair and up her nose. Since she tends to have skin issues, we are adding foods slowly. We'll do the rice cereal for two weeks, then try oatmeal for another two. After that, we'll branch out into the fun-filled world of other baby foods.

Next week, Andrea gets her second H1N1 vaccine, and we begin the process of her 9 month vaccines. The doctor is amenable to continuing to space them out, one a week until she gets them all. I also learned something interesting from a physician's assistant. We had been giving Andrea a dose of Tylenol after each vaccine to ease the discomfort. Apparently, research shows that children who do not have Tylenol after vaccines have better antibodies than children who take it. So, unless she runs a fever, we have to just try to stick out the crabbiness that goes with the shots.

Yesterday, Andrea saw her pulmonologist for a follow-up to her most recent illness. For the first time (ever, I think) the doctor said her lungs sound GREAT! This is a HUGE deal, as most of her problems stem from crummy lungs. The doctor gave us clearance to try her off the oxygen for some time over night, as long as she stays on the PulseOx so we are aware of any problems. Before we can try that, though, we're waiting for the oxygen company to come out and reset the PulseOx meter. It is set to alarm any time Andrea's heart rate drops below 80 beats per minute. When she came home from the hospital in June, she was almost 8 pounds lighter, and her normal heart rates were much faster. Now that she's bigger and older, the doctor said a rate in the 70s is not unusual when she's in a deep sleep. A few nights ago, we had 2and a half hours of alarms, because she was sleeping so deeply and her heart rate was hovering between 78 and 82. One thing we've learned about using oxygen in the home is that you need a prescription for EVERYTHING. I called yesterday to get the monitor reset, and nothing can happen until the doctor's office sends an updated prescription. Apparently, this was something I was supposed to know. Granted, I know more now about all this stuff than I ever hoped to, but still, it seems like someone should be more on top of helping us out.

In January, the pulmonologist will have us in for another sleep study, to take a close look at what really happens when Andrea sleeps. If all goes well, she might be off the oxygen completely by her first birthday. It's a good thing that no one told me up front that this would be our lives from June until February. I think I would have had a nervous break down. However, I reserve the right to fall apart as soon as all this is over. It has been a long haul, and I'm grateful so many of you are still along for the ride. It helps us feel less lonely.



Out of difficulties grow miracles. Jean De La Bruyere

Thursday, December 3, 2009

One Labor-Intensive Baby!

Poor Andrea has had skin rashes on and off for several weeks. When she's on the oral steroids (Orapred) for her asthma, the rash clears up. Once she's off the medication, it flares up again. At every doctor's visit, we were given another "solution" to try. For the really bad areas, we were told to use an over-the-counter cortisone cream. The rest of her, we just slathered in lotion. First, Johnson's Baby Lotion, then CetaPhil, then AquaPhor. Nothing worked very well, or for very long. So, at her last well-baby visit, the doctor suggested we take her to a dermatologist. Andrea and I had THAT appointment earlier this week.

Basically, the poor thing has eczema over most of her body. The treatment is a major time commitment! We have prescription cortisone ointment for most of her body. (Not on the face or hands) This gets applied twice a day. We have a prescription foam for her hair, used every night in the bath. In between, we have to lotion her up with AquaPhor "as often as possible". While in the bath, we have to use soap without alcohol - not easy to find in a liquid. Also, no wash cloths, loofahs or sponges.

On top of the skin regime, Andrea is taking Orapred and Flovent twice a day and breathing treatments every 4 to 6 hours. She's still very congested from her illness, so we have to suction her out often. We use a disgusting contraption called a "Nose Freida", (Google it up if you want details) which works well, but Andrea truly hates.

Despite all the procedures, Andrea has retained her usual disposition. Meaning that one minute she's happy as a clam, and the next instant she's a demon child. The NICU nurses told us that she survived because of her forceful personality. We're trying to convince her that she can lighten up a little, now that she's home!

Andrea is making great progress with her strength. She can pull herself up to a standing position if we hold her hands. She rolls ALL OVER THE PLACE, meaning we can no longer leave her on the couch or bed. Even if we're right there, she's too fast to be safe. She's working on the balance needed to sit up. You can see in today's picture that she's getting there. We actually propped her in the corner of our couch, which provided enough support that she could hold herself up for a bit.



Andrea has a wonderful family. Her outfit in this picture was an early Christmas gift from her Aunt Teeny and Uncle Stephen. Aunt Teeny has a 12-year old daughter, a son, and 6 nephews, so it's been a LONG time since she was able to buy things for a baby girl. Those of you with children know that girls' clothes are WAY more fun than boys' clothes. So, for the next few pictures, you'll see Andrea's fashion show, courtesy of Aunt Teeny and Uncle Stephen.

"Life is not about waiting for the storms to pass...it's about learning how to dance in the rain." Anonymous

Thursday, November 26, 2009

Thankful for Nine Months

As of 5:29 p.m. today, Andrea is celebrating 9 months of life. The fact that it is also Thanksgiving seems especially appropriate. We rejoice in the milestone, and are thankful for our great good fortune.

I haven't posted in a few weeks, because Andrea has been quite sick. As usual, with her it begins small, but escalates quickly. Last Thursday, (11/19) she has a little sniffle and a slight cough. On Friday, I called her pulmonologist to see if we could be seen, since none of the doctors' offices we frequent have weekend hours. We were fortunate in that there was a cancellation, and we got Andrea checked out. Her chest was tight enough that the doctor gave us stronger medicine for the nebulizer, and increased her Flovent from the 44 dosage to 110. We went home, hopeful that the medicine would do the trick.

In the evening on Friday, Andrea began to run a fever. It wasn't high, just 100.4 F, but she'd never had a fever before, except for one day in the hospital last June. Luckily, "her" pulmonologist was the doctor on call over the weekend, so I called him for advice. We were told to give her Tylenol, and call back if the fever persisted on Saturday. Most of Saturday morning, she was fever free (well, 99+, but that's not a fever for the doctors). However, about 5:00, she was back on the 100.9 F range. I called the doctor again, who decided to start her on TamiFlu, just to be safe.

Now, if you have not been living under a rock for the past few months, you know that there is great panic because of H1N1 ("Swine") flu, and many pharmacies are out of children's TamiFlu. It has to be in liquid form for the babies, obviously. Some pharmacies are "compounding" liquid TamiFlu from the adult capsules. There is only one pharmacy in our area that does that, so we called them to see if they had stock to make the drug. Amazingly enough, they had the liquid on hand, but were closing in less than 15 minutes. The doctor called in the order, and Ken raced to the store. I generally don't publish names in the blog, outside our immediate family, but I need to acknowledge this store. The pharmacist at Liberty Pharmacy in Chatham, NJ stayed in the store until Ken got there, fortunately just slightly after closing time. On top of that, when we ran out of medicine because Andrea spit out a dose and it needed to be repeated, he had another one ready to go for us. It was reminiscent of the old style businesses, where people are important, and the goal is to help, rather than just to make money. We were greatly impressed by the service and the treatment we received. So, THANK YOU Liberty Pharmacy. You are one of the many things we are thankful for today.

So, it has been a rough week. The fever spiked at 101.5 F on Sunday night, and has been gone since Monday morning. We still give breathing treatments as needed, usually 4 or 5 a day. To Andrea's relief, she took the last does of TamiFlu this morning. It must taste terrible. She has not been a fan. She is still coughing and very stuffy. She has a hard time eating, since she cannot breathe through her nose. We do some respiratory therapy on her back, to try to clear the congestion from her lungs.

Andrea was due for her 9-month "well-baby" visit yesterday, but was too sick to really have a good checkup. The doctor looked her over, and we got an updated weight and measurement. (13 lbs, 15 oz, and 25 inches long!) We rescheduled the visit for mid-December, at which point we can start giving Andrea some solid foods. We have been giving her milk off a spoon at the dinner table, so at least she has the idea of it already!



Here is Andrea in her Thanksgiving outfit. She's too sick to go out, so she and I are hanging out at home. Ken got me Chinese food, and I'm planning to watch "Angels and Demons" on Pay-Per-View. Kenny G is with my family, and Ken and Kenny C are off to celebrate with his family. Still, I wanted Andrea to get to wear her new clothes. This is the first time she's worn a dress. We opted for leggings under the skirt, instead of stockings. It's too cold to be bare-legged, and the stockings aren't as comfortable! (Thank you Grammy and Ann Marie!)

For each new morning with its light,
For rest and shelter of the night,
For health and food, for love and friends,
For everything Thy goodness sends.
~Ralph Waldo Emerson

Saturday, November 14, 2009

The Plan for Now

Friday, Andrea saw her pulmonologist again. We got the results of her sleep study and now have a plan moving forward. Unfortunately, Andrea's oxygen saturation levels dropped too much and too frequently over night for us to discontinue the oxygen use right now. At one point, she dropped 9 times in a hour. We originally thought we could discontinue the oxygen and just rely on the PulseOx, but it would alarm constantly. The doctor's thought is to keep Andrea on the oxygen until January, at which point he will schedule another sleep study. While we are disappointed to have to continue with the oxygen, we feel we put in too much time getting to this point to give up now. We prefer to be cautious.

Another change in Andrea's life was the addition of some maintenance medications for asthma. Andrea needed oral steroids twice in less than a month. It seems that, right now, she is susceptible to asthma when she gets a cold. Instead of relying on steroids when she gets sick, she's taking Flovent daily to keep her from having problems. When Kenny was young, the only way to medicate him was with a nebulizer. Things have changed so much in nine years that Andrea can take the same kind of medication as Kenny. We were given an inhaler for her, with a "spacer" and a tiny face mask. We hold the mask over her face for 30 seconds, and she inhaled the medicine. This is a HUGE improvement over 15 to 20 minutes for a breathing treatment. We were also given a rescue inhaler, so when she is wheezing, we can get her relief much faster. It is also easier to travel with the inhalers, instead of the nebulizer.

We go back to the pediatrician on Monday, to finally get Andrea her N1H1 (Swine Flu) vaccine. While we realize that no vaccine is 100% perfect, we'll feel better once she has some protection from swine flu. She's been tolerating her shots pretty well so far, and we hope that continues.

Andrea continues to teethe in earnest. So far, no teeth have appeared, but she is very drooly, and chews on anything she can get in her mouth. She has taken to pulling my fingers in. Smart baby that she is, she has learned that it hurts to chew on her own fingers, but it doesn't hurt to chew on mine! Most amazing of all, our 15 ounce baby is now 13 pounds, 11 ounces! She has fat little turkey legs and chubby cheeks. We never imagined this day would come!



“For today and its blessings, I owe the world an attitude of gratitude.”

Monday, November 9, 2009

A Gemini at Heart

Andrea was supposed to be born on or around June 4. If you follow Astrology, that would have made her a Gemini, or the Twins. As a Gemini myself, I can state that we tend to be tough people. I have at least two sides to my personality, although Ken insists I'm sweetness and light all the time. Andrea was born at the end of February, making her a Pisces. Ken is also a Pisces, and the most easy-going, mellow person you'd ever want to meet. Andrea is NOT an easy-going, mellow person! Just when we think we've got her figured out, she throws a monkey wrench into the works.

Since Andrea has been home, we've been giving her tub baths. (As opposed to the sponge baths she got in the hospital.) She has always loved being in the water, and in the last month or so has learned to splash and make a general mess. So, we got into the habit of bath time being a nightly ritual to kill time until it was late enough to go to sleep. Well, starting three night ago, Andrea DOES NOT like baths any more! She kicks up the biggest hissy fit as soon as her feet touch the water. The first time, I figured she was having an off night... either she was too tired, or hungry, or the water was too hot or too cold. When I had the same reaction on two more consecutive evenings, I got the idea that she's no longer a fan of water. Why would I have expected anything different?

As a general update, Andrea had some blood work done today. Her pulmonologist is continuing to watch her hemoglobin and electrolytes. Even though both were normal at her last workup, the doctor wants periodic checks to make sure they remain that way. Andrea was a trooper. She cried once, when the needle went into her arm, then just laid more or less quietly on the table as the plebotomist drew the blood. Right after the draw, we headed off to the pediatrician for this month's RSV vaccine. As mentioned before, Andrea needs this shot once a month between October and April. I guess Andrea figured she'd been patient enough, because she was not a happy camper after getting the RSV shot. She was so angry, she turned purple! Still, I keep telling her that shots are better than getting RSV.

Since Andrea was born, I've been telling the boys that sooner or later, she'll become interesting. Over the past few days, Kenny has decided I'm right, and has been playing with her. He likes to make funny faces, and she likes to laugh at him. Today's picture shows her reaction.



As of yesterday, Andrea has been home 5 months. Every day seems to blend into every other day, and I forget time is passing. I reread the early blog posts today, and I can barely remember that time, or that baby. We were so scared and worried! We clung to every bit of good news as if it was Gospel and tried to steel ourselves to hear bad news. (Which fortunately rarely came!) We thank all the devoted followers of this blog, and of Andrea. I know many of you follow anonymously, but we are aware of your love and prayers. Thank you for them! We continue to be blessed by all of you!

"Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver."
Barbara De Angelis

Saturday, October 31, 2009

Happy Halloween!

Andrea is fighting off another cold, or possibly some allergies. She's back on the oxygen during the day, and taking a steroid to help clear her lungs out. Because the weather is lousy, we opted to not take her out for Trick or Treating, but we did dress her in her costume so all could see how cute she is!



I don't have much to report today, and I only get a few minutes respite from Andrea, so just enjoy the picture and keep Andrea in your thoughts and prayers.

Happy Halloween to all. May you only get good treats!

Tuesday, October 27, 2009

8 Months a Day Late



Here is Andrea sleeping in her swing. The red mark on her face is from the TegaDerm, which we have to use to hold the nasal cannula on over night. Unfortunately, Andrea likes to pull it off, which leaves these nasty marks!

Another milestone has come, and I almost missed it in the insanity that is our day to day lives. Yesterday, at 5:29 p.m., Andrea celebrated her 8th month of life! We have now been home almost as long as we were in the NICU. Each individual day is so busy, sometimes time passes without even realizing. Andrea continues to progress and is getting bigger and stronger every day. She seems to be mostly recovered from her illness, and we are once again able to take her off the oxygen during the day.

In the good news/bad news department, Andrea has learned to roll from her back to her stomach. She does it mostly when she's frustrated, but she has also done it over night. As a result, we now need to swaddle her tightly in a blanket when she's sleeping, to help keep her from tangling in her cannula. Still, she seems to sleep better when she's swaddled, and for some reason, we don't get false alarms from the PulseOx.

In the purely "good news" area, Andrea has learned to laugh. She is only slightly ticklish (unlike her mom, who is violently ticklish!) but will laugh if we make certain faces or sounds. It is a joy to hear!

We go back to the pediatrician tomorrow for Andrea's flu shot booster, although we're still waiting for the injectible "swine flu" vaccine to be available. Our biggest concern right now is trying to keep her healthy through the winter. Her doctor gives us the first appointment of the day, so we can avoid germs in the office. We don't go many places, to minimize her exposure to infection. It's hard, because it can be very isolating. We have even had to avoid seeing family and friends, because we can't risk other children passing things on to Andrea.

So, thank you all for the prayers and good wishes that have gotten us this far. While every day is a miracle to us, we still try to commemorate the "big" days and the little accomplishments.

Endurance is one of the most difficult disciplines, but it is to the one who endures that the final victory comes. Buddha

Tuesday, October 20, 2009

Developing Immunity



Andrea and I went to see her pulmonologist Monday, as a follow up to last week's illness. The good news is that Andrea seems to be fighting off this infection pretty well on her own. She's on Prednisolone and Abuterol to help her breathing, but hasn't needed any other medication. She has not had a fever yet (knock wood) and is getting better slowly. We know it's important for her to get sick, since that's the only way she will become immune to all the germs floating around. It's just so hard to see her not herself. She has been back on the oxygen 24/7 to give her some extra support, so she can devote all her energy to getting well. It's terrible how quickly we got used to not having the cannula on during the day. We feel like, for the first time, we took a step backwards.

While we were in the doctor's office, we got the preliminary results of Andrea's sleep study. She did OK, but her respiratory rate and oxygen saturation levels did drop overnight. Especially since she's sick right now, the doctor feels that this is not the right time to make any changes in her routine. We'll give her a few weeks to be well and truly over this illness and then reevaluate. We have a follow up appointment with the pulmonologist in early November, so we'll make plans then. Ken and I feel like we've put in a tremendous amount of time getting Andrea to this point. As much as we want to be done with the oxygen and monitors, we are in no hurry to remove her prematurely. (ha - pardon the pun!)

Just to make life interesting on top of all this, it appears that Andrea is teething right now. Her favorite thing to do for fun is drag the cannula from beneath her nose and shove it into her mouth, where she sucks on the prongs and gnaws on the tubing. I suppose she still gets the oxygen this way, but it's sort of gross, plus she's getting very slobbery. We've been hesitant to give her Tylenol for the discomfort, not wanting to mask a fever. So we depend heavily on Orajel and patience!

We know we are lucky to have come so far with so few bumps in the road. We are just tired to our very bones. The most frustrating part of all of this is that we don't know when we will be on the other side of the tunnel. We know that some day, Andrea will be just another kid, but we can barely imagine the time when that will arrive.

Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.

Thursday, October 15, 2009

Our Roller Coaster Ride

When Andrea was first born and in the NICU, many of the doctors and nurses warned us that the experience would be a roller coaster. We were told to expect "one step forward and two steps back". We were fortunate to have not had that experience with Andrea. With one exception, her NICU time was relatively uneventful. All the really awful things we could have endured never materialized.

Now that Andrea is home, we seem to have gotten on the roller coaster. For the last few days, Andrea has had a slight stuffy nose. Wednesday, it spread to a cough in her chest, and we were in the Morristown Hospital Emergency Room that night. The outcome was that she probably has a viral infection, and there's not much we can do except keep her comfortable and suction her nose to help her breathe.

Thursday during the day, her cough kept getting worse, and I took Andrea to see her doctor. By that time, she was really wheezing, and the doctor called Andrea's pulmonologist. Her regular doctor was away, but a covering doctor agreed to see her. Off we went to the pulmonologist. A respiratory therapist spent an hour with us, giving Andrea a breathing treatment and some chest compressions to loosen the congestion. After the doctor examined Andrea, we were home again, (much to my relief) with some medication, including an oral steroid. We have to give Andrea breathing treatments with Abuterol several times a day and suction her out to try to keep the gunk from building up in her nose. I'll call the doctor tomorrow for follow up, and we'll see where we are.

I'm wiped out! The constant stress is draining, and there is little we can do about it. Right now, we just keep waiting for Andrea to be bigger and stronger. We were thrilled that she was able to try to fight this illness at home, since having her in the hospital is hard on our whole family. Still, it's hard when the children are sick, and even more worrisome with Andrea, given her history.

I will post an update when we know more. Right now, she's holding her own, which is all we can ask of her.

When you think of life, think first about the blessings you have. Don't focus on misfortunes, for they are but a faint shadow.
Catherine Pulsifer, from Many Blessings

Monday, October 12, 2009

Sleeping Beauty

The last time we saw the pulmonologist, he wanted Andrea to have a sleep study to see what would happen if she was taken off oxygen overnight. We were incredibly lucky that the hospital was able to have us for Andrea's study this past Tuesday, October 6. The experience was very interesting. Andrea and I went to Morristown Hospital Tuesday evening, where they actually have a pediatric sleep center. The poor baby was connected to a bunch of monitors, including 12 EEG leads on her head. She had her regular PulseOx on her foot, plus a belt around her stomach and another around her chest. Because Andrea is herself, she wanted NO part of all the wires. She immediately started to rip off everything she could reach. Ultimately, we had to swaddle her in two blankets, in what Mom calls a Papoose. She arms were pinned inside the blanket. The nurse also wrapped her head in gauze to keep the leads on. She looked so pathetic in the crib! I was going to take a picture, and opted to spare her from having to ever see what she went through.

The night itself was the most uneventful I've had, probably since I found out I was pregnant. When Andrea was in NICU, even though we knew the nurses were taking care of her, our hearts stopped every time the phone rang. Once Andrea came home, our lives have revolved around the monitors - first the apnea false alarms, then the PulseOx craziness. We've dealt with belts and leads, and Andrea ripping the cannula off her face. Even though Andrea was being monitored during the sleep study, none of the alarms were in our room. So I actually got some sleep for the first time in ages!

Much to my surprise, Andrea slept all night in the hospital. I got up at 4:30, expecting her to be waking soon to eat. Incredibly, she didn't get up until the technician came in to remove the leads. It was the first time ever that she slept all night. Even better, she seems to be continuing the trend since we've been home. Most nights, we get from 10:30 pm (or so) until 6:30 am (or so) before she wakes up. Our concern now is to make sure she eats more during the day to make up for what she's not getting over night.

Everything else in Andrea's world is good. She got her first RSV vaccine last week. RSV is a respiratory illness that all children can get, but preemies are especially at risk, and it can be fatal. The vaccine is not 100% preventative, but rather just makes the illness less severe if Andrea contracts it. She has to be re vaccinated every month through March. Now, we're just waiting for the injectible swine flu vaccine, and then she'll be as covered as she can be.



One of my friends posted a comment to the previous post, remarking on what a miracle Andrea is. I am still amazed that we are where we are now, and that we have been so tremendously lucky. We credit the prayers and support from our family and friends, and all the people with whom you've shared this story. Thank you for your part in the miracle that is Andrea.

Better to lose count while naming your blessings than to lose your blessings to counting your troubles.
Maltbie D. Babcock

Tuesday, October 6, 2009

Developmental Clinic News




Yesterday, we had our first appointment with "Developmental Clinic" at Robert Wood Johnson in New Brunswick. The purpose of this clinic is to follow Andrea from discharge until she turns three, looking at her development compared to babies of her corrected age. So yesterday, she was compared to the expected norms for a 4-month-old baby.

The exam consisted of an evaluation by a speech therapist, physical therapist, neonatal fellow and neonatologist. Except for the speech therapist, everyone else knew Andrea from NICU, so it was a wonderful reunion. Even better, Andrea has NO appreciable deficiencies! The speech therapist expected her to have a wider range of sounds, and gave us some exercises to do to encourage that. I think part of the problem with speech is that, until recently, Andrea lived with the constant drone of her oxygen concentrator. I imagine that must have interfered a bit with her ability to differentiate sounds.

The physical therapist was incredibly pleased with Andrea. We have said for a long time that she is a very strong baby. It was borne out by her exam. She was able to push up on her arms and lift her head and chest off the table. I think she would have turned over, given enough time. Granted, the table was narrow, so it's probably just as well she didn't!

The doctors were pleased with Andrea's growth, responsiveness, tone, and personality. She passed with flying colors. It was wonderful to see that our assessments of her have not been off the mark. The doctor told us that these clinics will become more extensive as Andrea grows. Right now, they can only observe so much, and Andrea can't really perform on command. As she gets older, they will do tests to evaluate her cognitive functions and ability to learn.

One indication that Andrea is doing really well is that we don't have to go back to clinic until March. Usually these visits are scheduled three months apart in the beginning, but there's nothing of concern, so the doctors feel she can wait a bit longer before being seen again.

One of the best parts of the day for me was actually before Andrea's appointment. We were able to visit one of Andrea's primary nurses from the NICU. Although there were many people caring for Andrea, it was this one nurse who made the experience survivable for me. Especially at the beginning, when I could barely touch Andrea, it was so helpful to see a friendly face and know that Andrea was being well-cared for when we weren't there. I believe Andrea remembered her nurse, if not by her appearance (Andrea's eyes were not fully developed before discharge) then by her sound or smell. When the nurse was holding Andrea, she was very calm and peaceful. While she is young to have 'stranger anxiety", she does know "her" people, and reacts to being around them.

The last piece of news for today is that we have been scheduled for our sleep study. Miracle of miracles, it's actually TONIGHT! Andrea and I will be in the hospital from 7:30 tonight until 6 a.m. tomorrow. As I understand it, she'll be connected to a bunch of monitors and evaluated to see how she does when she's off the oxygen completely. We won't have results for a week or so, but I'll try to write about the experience tomorrow.

As we mark all these milestones, thank you for the continued support, encouragement, and prayers. Our family and friends have meant the world to us. Andrea is luckier than she knows to have all of you in her life.

"Every worthwhile accomplishment, big or little, has its stages of drudgery and triumph; a beginning, a struggle and a victory." Ghandi

Friday, October 2, 2009

A Red Letter Day!



Before I get to the pulmonology update, I have to mention that the children's store, Crazy 8's, has a complete giraffe-themed infant wardrobe. Now, I have written before of my fixation on giraffes for Andrea, so I have to admit to buying one of almost everything in the set. They didn't have the jeans or jumper in her size, and the sweater dress was ugly. Other than that, we are in fine giraffe form. You can't tell from the picture here, but the hat actually has horns! It is very cute.

So, we had a chest x-ray done yesterday, and saw the pulmonologist today. We are ecstatic to report that Andrea is allowed to be oxygen free during the day! We have to put her on the PulseOx during naps, and put the oxygen back on for overnights, but she can be off the oxygen for the bulk of the day! We are supposed to do spot checks with the PulseOx and keep a close eye on Andrea, but we still feel like we've been given a gift. It is a pleasure to be free to walk around the house without tripping over the cannula.

The next step now is to have a sleep study. One night, fairly soon we hope, Andrea will spend a night in the hospital, having a "sleep study". The doctors will hook her up to a plethora of machines to monitor just about everything you can think of, to see how her breathing is when she's in deep sleeps. We can't wait for this, because once Andrea can be off the oxygen over night, we can stop jumping to deal with the alarms from the PulseOx. We have been living with the alarms for almost four months, and I think it's starting to take its toll.

The rest of Andrea's pulmonology appointment was uneventful. There is some discrepancy in the size of her lungs as seen on x-ray. One is slightly bigger than it should be, and the other is smaller. Right now, it's not causing problems, so the doctor said it's just something they note and that we'll watch as Andrea grows. One positive finding from the chest x-ray is that Andrea's lungs are much healthier now than they were in the last x-ray. The doctor also mentioned that Andrea sounds good when she breathes. Last month, the doctor told me that her lungs were "crackly". Much of that sound has cleared up. She is retracting less and breathing more easily.

The next big event for us in on Monday, October 5. We have to go back to New Brunswick for "Developmental Clinic". Andrea will be assessed against the norms for full term babies of her corrected age. She is corrected to 4 months on Sunday, so the specialists will be looking to see how she compares to a typical four month old baby,

"All great achievements require time.”
Maya Angelou

Saturday, September 26, 2009

Seven Months Old and Completely Average!

Well, as of 5:29 p.m. today, Andrea is celebrating seven months of life. (She'll be 4 months corrected age on October 4.) We saw the doctor on Wednesday for the first of many flu shots and other vaccines, along with a well baby check, and I'm pleased to report that Andrea is absolutely average. She's in the 50th percentile for head circumference, height and weight, and those numbers are for a full term baby! When Andrea was born, she was so small that her length was charting on the head curve, (of a preemie growth chart!) so the fact that she's made it all the way into the middle of "full term" babies is a miracle in and of itself.

We are anxiously awaiting the pulmonologist's appointment coming up this Friday, and the Developmental Clinic appointment in early October. Andrea has decided she's done with oxygen. We find ourselves retaping the cannula at least half a dozen times a day. She can have time off, and we take full advantage of those breaks, but the doctor wants her to be on the oxygen over night and for at least some time during the day. We have tried something called "Tender Grips" which were recommended by a preemie parents' web site I found (and which cost more than $5 EACH!), and she managed to get those off too. Later tonight, we're trying something called "duoderm", which the pulmonologist recommended. It won't stop her from pulling off the tape, but it should spare her skin from more damage.

I try very hard to not complain, especially in this blog. It is supposed to be a place where we celebrate the miracle that is Andrea, and where I keep the interested populace apprised of her progress. And don't get me wrong - we are constantly grateful that we have the wonderful outcome we do. However, the past few days have been almost impossible, and I'm worn out. Yesterday and today, the only way I could get Andrea to nap was by taking her for a long ride in the car. We think she may be starting to teethe, since she's shoving whatever she can into her mouth, but it's still been a rough time. Ken has her now, so I can get a few minutes peace, and she seems to be sleeping for him. She saves the crabbiness for me, I guess.

I'm not sure I'll get another post in this week, but I will make sure to update the world after Friday's doctor's appointment. One day this week, we'll be going for a chest x-ray, so hopefully all will be improved with Andrea's lungs. As always, thank you for continued support and prayers.

“Don't pray for lighter burdens, but for stronger backs.” Anonymous

Tuesday, September 15, 2009

Roll Over, Roll Over...

When we were little, we used to sing "There were 5 in the bed and the little one said 'roll over, roll over'". I'm not sure who else knows the ditty, but it goes on to have "one" fall out and repeats until you count down to one, at which point, the "little one" goes to sleep. I sing this to Andrea sometimes, especially when we're doing PT, part of which involves rolling her from side to side to help strengthen her muscles. Well today, Andrea was on the floor having "tummy time", (a torture invented now that babies only sleep on their backs) and was working hard to get her head and chest off the floor. I looked over at her, since she was complaining loudly, and at that VERY MOMENT she managed to roll from her stomach to her back! She was quite surprised by this, and lay on the floor looking perplexed until I picked her up. I eventually put her back on her stomach to see if she'd repeat the trick, but so far, she refuses to perform on command. Still, it was a treat to see, and we're very proud of her!



In today's picture, Andrea is hanging out in her "Giraffe Bouncy Seat", a gift from my friend of longest standing, Ann Marie. (Now that I'm 40, I figure I can't refer to my friend as "oldest"...besides, she's younger than I) I may have mentioned that we let the boys pick many of the items for Andrea's room, and we have quite the animal theme going in the decor and accessories. Fortunately, Ken and I are animal lovers as well. In the NICU, Andrea was in a "Giraffe" isolette, so we decided that the giraffe will be her special animal. (Kenny George has a thing for polar bears) I may have gone somewhat overboard in buying giraffe themed things for her, from her hair brush to the holder for her pacifier. When she's old enough to have an opinion, I won't force them on her, but truthfully, baby giraffes are so cute, it's hard to not love them! I have to say, at least so far, she doesn't seem too interested one way or the other.

In other exciting news, Andrea continues to do well without the oxygen. We give her at least 4 hours off each day. (She can be off up to 8, but has to be on the monitor, and I can't always pull that off.) The biggest drawback to taking the cannula off is that Andrea HATES when we have to put it back on. She's much happier without it, and never stops trying to get rid of it. If she can't pull the tegaderm off, she'll settle for getting the prongs of the cannula in her mouth, where she proceeds to suck on them. I find this quite gross, but we can't seem to make her stop. I guess she at least gets the oxygen support that way. She used to do the same thing in the NICU with the CPAP (excuse me, "nasal IMV"), which I'm sure drove the nurses crazy. It's certainly making me insane!

“I long to accomplish a great and noble task; but it is my chief duty to accomplish small tasks as if they were great and noble”
Helen Keller

Thursday, September 10, 2009

Don't Throw the Baby Out With the Bath Water

Note: I began this post Thursday night and am just now (Saturday morning) getting to finish it. I hope it all still makes sense.

My mother is a wonderful person who (along with my father, of course) raised three children, all of whom have gone on to have children of their own. Counting my stepson, Mom and Dad now have 7 grandchildren, ranging in age from 12 on down to Andrea at 6 months. Both my parents (but especially Mom) now spend their retirements traveling between the three siblings (Long Island, NY, Essex County and Bergen County, NJ) providing baby sitting, help with housework and general moral support. My mom often says she gets frustrated with people who expect babies to be happy all the time. After all, they're entitled to their moods, too. Mom likes to point out the ADULTS aren't happy all the time, and they have much more control over their lives than babies.

So, why all the news about Mom in Andrea's blog? Well, because Andrea is in a MOOD tonight, and I'm ready to scream! She's yanked the cannula off her face at least half a dozen times today, and will only sleep when someone is holding her. Right now, she's on the floor on a play mat, rubbing at the cannula until the prongs are in her mouth. Then she sucks on the prongs. Does she want her pacifier? NO! Will she suck her thumb? NO! She just wants the cannula. Part of the problem right now is that she's overdue for a nap, but I refuse to let her sleep on me. So, instead of giving me the satisfaction of sleeping in her crib, (or even on the mat on the floor) she's just going to be grouchy.

I really can't complain. My Dad was here the last three days, helping out because Kenny was sick and I needed someone. He's very good with Andrea - and is willing and able to hold her while she sleeps. I think he's "the Baby Whisperer". He holds her and she's calm. Oh, well, it's a grandparent's prerogative to spoil the grandchildren. As the mother, I have to hold firm.

In an effort to kill time until I can fed Andrea and (hopefully) get her to sleep, I gave her a bath a little earlier than usual. Like both her brothers, she is a water baby, and loves the tub. The one we have was a gift from "Aunt Adrienne" (who gave us the much more precious gift of her blood for Andrea) and is a blessing for us. It's small enough that I can fill it in the bathroom and bring it into Andrea's room. It's easier to do that than put Andrea on an oxygen tank or use the LONG cannula to get her into the bathroom. What are we going to do with ourselves when we don't have oxygen issues any more? We'll be delirious with the joys! Anyway, here is a picture of Andrea enjoying her bath. She would only smile when I didn't have the camera pointing at her, so she looks more unhappy than she really is :-)



“Patience and fortitude conquer all things”
Ralph Waldo Emerson

Wednesday, September 9, 2009

This Parenting Gig Ain't for the Faint of Heart

First off, I just noticed that the "T" key on my laptop is being wonky. I always spell check my posts, but I'm perpetually tired, and am not sure I'll catch the errors. So, if something doesn't make sense, see if adding a "T" someplace makes it work better. And I'll try to watch myself.

For the past two weeks, Ken has been fighting some kind of upper respiratory illness. With our luck, it was viral, so there was no way to make him not contagious for Andrea. As a result, I banned him from caring for her, touching her, or even breathing in her general vicinity. He was a good sport about it, and took care of the rest of our lives while I did baby care 24/7. So far, Ken is better, and it looks like Andrea might be OK, so it was worth it. Today's picture is the first one I've been able to take of the two of them since before Ken got sick.



So, over the weekend, we took the kids to Van Saun Park in Paramus (a fun place with playgrounds, a zoo, a carousel, etc. Worth a trip if you're in the area) and then went to my parents' house for supper. Our boys were starting back at school on Tuesday, so this was their last hurrah, pretty much. We had a great time, and Andrea always does better when she's away from home. I think she's tired of the limitation of the concentrator, and prefers to be out and about. Before we left Mom & Dad's, we decided to open a new oxygen tank for the ride home. It's not far, less than 30 miles, but with traffic can take more than an hour, and we didn't want to run short en route.

Once the new tank was opened and the regulator attached, I checked the oxygen flow and the gauge, just to make sure all was functioning. Imagine my surprise when I noticed that the brand new oxygen tank (which had been sealed until 5 minutes ago) was almost empty! Suffice to say, we panicked! Unfortunately, you can't run to CVS and grab some O2. We flew out of the house and I confess, drove like a banshee to get back home. The boys were in the back of the car on baby duty. Every five minutes, I had one of them checking to make sure the cannula was in her nose and her chest was moving. God was with us, and we made it home in once piece. But it was a scary reminder of how dependent we are on the equipment, and how relieved we'll be when it's gone.

As if all this is not enough, we had a scare with "my" son yesterday. He was running a fever on Monday, so we dosed him with Tylenol and let him watch millions of cartoons. Yesterday, which should have been his first day of school, he woke with an even higher fever, and such severe muscle pains he needed to be carried out of bed. (And he has a 6 foot high bunk bed!) I called his doctor, who advised a trip to the emergency room. So, we headed off to the ER, where we spent 4 hours having IV fluids and blood tests. Thankfully, the tests were all negative for serious illness, and the IV fluids made all the difference. However, having hit 40 in May, I'm trying to cling to my still-dark-brown (but thinning) hair. Between the oxygen and the older children, I feel the grays starting to form beneath my scalp. LOL!

"I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I've bought a big bat. I'm all ready, you see. Now my troubles are going to have trouble with me." Dr. Seuss

Monday, September 7, 2009

Life As We Know It



Thank you to Daddy's friend, Lauren, for my pretty outfit. Mommy says I look too cute for words.

I know many of you miss the daily updates, and I miss posting them. I have to admit, writing this blog is very therapeutic for me. Unfortunately, I find that I have less time to write, now that Andrea is here 24/7. Of course, there is less news, too. As time passes, Andrea is becoming more and more like a regular baby. I don't want to start posting information about how many ounces of milk she's had and how long she's slept. I don't want to write it, and I imagine that reading it would be pretty dull, too, after a while.

However, having said all that, there is NEWS to share today! (Well, it's from Friday, but this is my first chance to write.) Andrea went to see the pulmonologist on Friday, for her monthly check up. The primary goal right now is to get her OFF they oxygen, preferable before I kill myself or throw the PulseOx monitor out the window. Last month, the doctor turned her oxygen flow down from .5 liters per minute to .25 liters per minute. We thought he might go down again this time to a flow of .125. Instead of that, he cleared us to take her off oxygen completely for up to 4 hours at a time, twice a day. She needs to have the PulseOx on so we can tell if she gets into trouble. As I write this, she's been off over three hours and her "sats" are running between 95% and 100%.

We are to continue to give her these four hour breaks twice a day (daytime only - oxygen all night long) until the beginning of October. At our next appointment, if Andrea is doing well, she will be scheduled for a "sleep study". She will spend the night in the hospital where she can be intensively monitored. In addition to her "sat" levels, they will look at how her respiratory system in general functions while she's sleeping. Hopefully, all will go well and we'll have our sleep study in October. My prediction is no more oxygen by Thanksgiving. Trust me, we will all be more thankful than you can imagine to be done with this!

The PulseOx is a mixed bag. We have fewer false alarms with it than we did with the apnea monitor. However, when Andrea is especially "wiggly", the monitor can't get a good reading, and will alarm. (We call this the "happy baby dance", when she's just playing around with her arms and legs) We can't turn it off, especially at night, because one of Andrea's favorite tricks is to yank the cannula off her face. Since we can't watch her around the clock, the PulseOx is the only way we have to tell when she's been up to mischief.

The pulmonologist has also been following Andrea's blood counts and electrolytes since her hospitalization. Her hemoglobin this last time was a whopping 10.5! It is my understanding that 11 to 14 is "normal", so we are incredibly close to normal. Andrea has never had a hemoglobin count this high without a blood transfusion, so it looks like her bone marrow has turned the corner and is finally up to speed. Her potassium, the only electrolyte that has been misbehaving since she stopped taking the diuretics, was finally within normal range, so we don't have to repeat blood work for a while. The doctor DID order a chest x-ray for the next time, since the last one Andrea had was in June, and she had the flu when it was done.

Andrea is now officially no longer a "newborn". She's wearing 3 month sizes in baby clothes and size 1 diapers. Her weight is up to 11 pounds, 8.5 ounces. Her length is 21 inches. I believe I mentioned before that preemies grow differently. Her head is still much larger than the rest of her body, and the length will be the last thing to catch up. Still, she's holding her own on the growth charts and moving in the right direction.

Thank you for all the on-going prayers, good wishes and support. I have always known that many more people are following this blog privately than publicly. In the past few days, I've gotten several encouraging messages from those anonymous fans, and they cheer me more than I can say.



“Friends always show their love. What are brothers for if not to share troubles?" Proverbs 17:17

Wednesday, August 26, 2009

SIX MONTHS TODAY


Where did the time go? As of 5:29 p.m., Andrea is celebrating her 6th month birthday! I cannot believe we have reached this milestone.

Andrea continues to progress. We try to give her breaks from the oxygen cannula, allowing the tubes to rest around her neck or below her nostrils. That seems to provide enough oxygen enrichment to allow her to maintain decent saturation levels.

We were blessed to have a visit today from Deacon Diane Riley. She officiated at our wedding (along with The Rev. Gray Lesesne) in May of 2007, and has provided emotional and religious support since January 2009, when our world was turned upside down. Andrea was in a good mood, and actually smiled for Diane! Ken has commented that Andrea is stingy with her smiles - she doesn't give them freely, but she was passing them out today. Diane prayed for all of us and gave Andrea (and me) a blessing. For a lot of reasons, we've opted to postpone Andrea's Baptism until the spring. Since we're not able to bring her to church right now (because of the risk of infection) it was wonderful to have the home visit.

Andrea is moving toward sleeping through the night, but she's not there yet. Last night, she was out from 7:30 p.m. until 3:15 a.m. The right number of hours at the wrong time of day! Today, she's being contrary, and has been crabby for much of her waking time, except when Diane was visiting. She would only sleep in my arms, although she's eaten pretty well. Oh, well... she's been a challenge up until now, and will probably continue to be one for the rest of her life!

Andrea's doctor has told us that we can be outside, but we should avoid being in buildings, since germs collect in the enclosed space. Since it has finally stopped raining, more or less, we've been going to the town pool. Kenny gets a chance to play with his friends, and Andrea gets some fresh air. I have to say, she seems to thrive on the attention she generates. Because of the cannula, people frequently come up and ask questions, and I love having the opportunity to tell her story.

"Few things in the world are more powerful than a positive push. A smile. A word of optimism and hope. And you can do it when things are tough."
Richard M. DeVos

Monday, August 17, 2009

A Momentous Day!

After my last post, I promised an update of the more positive, happy things going on in Andrea's life, so here it is.

For the last few weeks, Andrea has been getting her 4 month vaccines. Her doctor was amenable to giving her one immunization a week, instead of all four at once. We felt it would be less stressful for her immune system. She got her last one this week, and now she won't have to go back to the doctor again for a month. At her most recent appointment, her weight was up to 10 pounds, 14 ounces!

Prior to Andrea's last pulmonology appointment, we had blood work done again, in order for the doctors to check her electrolytes and blood counts. For the first time EVER, Andrea's hemoglobin went up on its own. It's still below normal, but it is moving in the right direction. In the past, she'd always needed to be transfused in order for her counts to improve.

Today was the best day so far. Andrea has become increasingly frustrated with the oxygen cannula. She constantly tears the Tegaderm off her face, attempting to get the tubes out of her nose. We have to keep socks on her hands in the car and when she's sleeping, just to make it harder for her to get a grip on the things. Since she's constantly ripping the Tegaderm off, her cheeks are covered with tape rash. We try to move the Tegaderm to different places on her face, to give each area a chance to recover. Well, today, Andrea did such damage to her cheek that there was no clear space to retape the cannula. Mom was here babysitting so we could go out with the older kids, and she agreed to hold the cannula in place to give Andrea's face a break. While we were getting Andrea set up for this, we turned off the oxygen. As Mom and I were talking, we started to wonder how long it would be before Andrea started to desat. Much to our surprise, she made it 6 hours with no oxygen support before her numbers started to dip. The lowest Mom allowed her to go was in the
mid-80's and when she couldn't pull herself up from that level in a few minutes, we opted to reconnect her. This is the longest period she's ever had with no oxygen support! We are over the moon with the good news!

One of the things we frequently tell people about Andrea is that her entire recovery has been on her own terms. There were times when the doctors or nurses tried to move her forward, and Andrea wasn't ready. Every time we let her dictate the terms, she moved at her own pace and never looks back. We see this as the next baby step forward toward getting rid of the oxygen completely. We plan to try to give Andrea these little breaks every day to rest her face and help her progress.

We see the pulmonologist at the beginning of September. We are excited to share this progress with him, and see what the next phase will be.



This is the first picture we have of Andrea without the cannula in place. Many months ago, while still in NICU, we got a picture of her without the CPAP, but she only lasted a few minutes, and she was obviously struggling. Here, she looks happy and at ease.

Friday, August 14, 2009

The Stress Never Ends


Let Sleeping Babies Lie


We are coming off a rough week, technology wise. It all began over last weekend, when I noticed that the humidifier on the oxygen concentrator wasn't bubbling as it's supposed to. (Fortunately, a respiratory therapist told me it IS supposed to bubble!) The humidifier is a small plastic container filled with water that the oxygen passes through on its way to Andrea. It helps moisten the oxygen, which helps keep Andrea's nose from becoming too congested.

Well, since I knew the humidifier was supposed to bubble, and it wasn't, I did what all good techies do when something isn't working. I took it apart, and put it back together again. Lo and behold, it started to bubble, and I believed all was right with the world.

Fast forward to Monday afternoon....I was feeding Andrea and she fell asleep, so I put her down in her crib. As I watched her sleep, I thought her color didn't look right, so I attached the PulseOx sensor (which we use primarily at night) to check her oxygen saturation levels. She should be between 97 and 100%. She was at 79%! Since we never know if the problem is the technology or the baby, I immediately connected her to one of the free standing oxygen tanks we have in the house for traveling, or if the power goes out. Her "sats" shot up to 100% in seconds. So, now we know the concentrator is wonky again. However, THIS time, the humidifier is bubbling away, so who knows what's wrong?

I called our O2 supply company, who send a technician out to look at the concentrator, and replace it if needed. He got here and repeated my solution from the weekend.... took everything apart and put it back together. Lo and behold, it worked again. Still, he left a "back up" concentrator, in case we had problems over night. The only problem is that the "back up" concentrator doesn't allow us to go down to a flow of .25. The lowest setting is .5 liters per minute. Still, in an emergency, it would have been OK. She was on .5 for weeks... a few extra hours wouldn't hurt her.

We made it though Monday night without incident, and I thought we were in the clear. No such luck.... Tuesday afternoon, I again notice that the humidifier isn't bubbling. I check Andrea's sats, and she's in the high 70s. I call the O2 company AGAIN, by this time one short step away from a total meltdown. I beg and plead for some help. Because Andrea is a baby, she can't tell us she feels short of breath. We have to rely on the visual clues (Thank you KL et al @ RWJUH!) and the PulseOx. The company promised to send out a technician, and a replacement concentrator that can accommodate the .25 liters of flow.

While waiting for the repair, I got a call from a respiratory therapist at the O2 company who wanted to try to troubleshoot the problem with me. We began by checking all the connections, which are fine. The concentrator is working correctly, or we'd have alarms and warning lights. The respiratory therapist asked me if we have another humidifier in the house, which we did. I'm told to swap it out and see what happens. Lo and behold.... we have FOUND THE PROBLEM!!! Apparently, the humidifiers wear out over time, and need to be replaced. (It would have been helpful to know this up front!) The respiratory therapist told me to replace it every week. The technician told me to replace it whenever it stops working. Well, since we only know it stops working when Andrea turns purple, I'll be replacing it every week.

So, I am one short step away from a nervous breakdown. I'm still pumping milk for Andrea, so I can't drown my sorrows in a nice glass of gin. Those of you willing to imbibe, have one for me... I really need it!

Not all the news is bad... I'll write a post over the weekend, with all the positive things that have been going on. There are many. I just had to vent my frustrations with the technology!

Thursday, August 6, 2009

Pulmonology Update

We saw the New Brunswick pulmonologist today, and got some pretty good news. On the down side, Andrea still needs to be on oxygen. She desatted in less than 5 minutes when we removed her from the support. On the other hand, WE LOST THE APNEA MONITOR!!! When Andrea is sleeping, she needs to have a PulsoOx meter on to make sure there are no problems. We have to do that for about 2 weeks, and if all is stable, even that will be a thing of the past. The doctor also made the determination to decrease the flow of her oxygen from .5 liters per minute to .25 liters per minute unless she's sleeping or eating.

Wednesday, August 5, 2009

10 Times the Andrea

Just a short note tonight to mention that Andrea is more than 10 times her birth weight. She was in the doctor's office today for a vaccine and weighed in at 10 pounds, 5 ounces. She is 22 inches long, which is more than double her birth length. We rejoice that all continues to be well.

We are going to the pulmonologist tomorrow, so will hopefully have some news about the apnea monitor and the oxygen. Hopefully, they will be phased out soon. I'll post about that appointment tomorrow!

:-)

Tuesday, July 28, 2009

Life Goes On Around Us


I have been chastised by many family and friends for not posting more regularly. Part of the reason for the lack of posts is my lack of time. When Andrea was still in the NICU, I spent my mornings there with her, and the rest of my day taking care of other business. Now that she's home, I spend most of my time taking care of her. While it is true that she sleeps a fair amount, the apnea monitor is our own private Hell. For those of you not familiar with this particular torture device, I'll explain.

When Andrea was discharged with the oxygen, she was also sent home on an apnea monitor. This is a machine that monitors her heart and respiration rates. We can either attach a "belt" with two rubber sensors to her chest, or use "stickies", which are similar to those things the hospitals. As it sounds, they are sticky, and just attach to her skin. Therein lies the first problem. Sometimes they stick to her skin...sometimes they stick to her pajamas. If they come off Andrea, we get a "loose leads" alarm, which is only slightly less painful than an ice pick in your ear. The belt is a little better, except when Andrea moves so much that she dislodges something, and we have loose leads again.

Even worse than loose leads is the MASSIVE number of false positive alarms for apnea. If the machine cannot detect Andrea's respiration, it sounds a repetitive beep, alerting us to the fact that she is not breathing. Now, this would be a good thing if Andrea had EVER had an apnea episode. She has not. However, sometimes her breathing is so shallow that the machine cannot detect it, and so it alerts us. Now, we cannot IGNORE the alarm; the one time we do, it could be a true emergency. So, the vast majority of the day is spent jumping every time the alarm sounds, just to check on the baby. The MOST annoying part is that Andrea sleeps bet wen 5 and 6 hours in the night, but the alarm, which obviously hates us, likes to blare every 1 to 2 minutes, usually between the hours of midnight and 4 a.m.

People have told me that I just forgot how hard an infant is, and that' what I' m reacting to. Honestly, Andrea herself is pretty easy. It's all her hardware that's wearing us out.

In terms of Andrea (for anyone still reading after my tirade) she is doing quite well. (Knock wood...) We see the pediatrician on Thursday, when she will get her 4 month vaccines. (Andrea was 5 months old on Sunday... on Thursday, she will be 8 weeks old corrected age). I'm predicting a weight of 9 pounds at the doctor's office. On Friday, we may be back in New Brunswick for apnea clinic, and we see the pulmonologist on Thursday, August 6.

Many of you have already seen this picture, but I love it, so I'm posting it here. It's Andrea, at her first party (for my son, Kenny) in her first fancy outfit. Thank you Aunt Teeny! (NB: the matching shoes were too big... we'll have to reshoot the picture when she grows into them!)

Wednesday, July 8, 2009

She Can See Clearly Now...

Andrea saw the eye doctor yesterday morning, for what turned out to be the last time. Her retinas have corrected themselves, and are now completely normal. Whatever vision problems she is going to have will be based purely on the genetics of having two parents with poor eyesight! I have to say, Andrea is really a trooper. She has endured more in the first 19 weeks of her life than most adults do in their entire lifetimes. The eye doctor is particularly unpleasant for her. She gets three sets of eye drops, 15 minutes apart, to dilate her pupils. Then the doctor uses a tiny speculum to hold her eyelids open so he can view the retinas. Andrea makes her opinion known during this procedure... to hear her scream, you'd NEVER guess there's anything wrong with her lungs!

We also saw the pulmonologist from Morristown Hospital last night. In the good news department, Andrea is continuing to improve from her bout with the flu. Her lungs are getting a little clearer, and she seems to be over the worst of it. In the bad news department, this doctor is the first person who's given us an idea of how long we're going to have Andrea on oxygen. His take is that in 4 to 6 weeks, we might be able to BEGIN weaning her off. For no real reason, I think we all assumed she's be off it a lot sooner. I still have to bring Andrea to New Brunswick, where we'll see the pulmonologist associated with Robert Wood Johnson, so maybe she'll have a different philosophy.

I've got to run for now... time to get Kenny off to camp! More when there's news.

Monday, July 6, 2009

The New Normal

We have adjusted again to being back home, but Andrea is still not herself. She has a cough on occasion, and we have a nebulier to give her breathing treatments, should it become necessary. The two most obvious differences are that she is not eating as well, and needs to be coaxed to finish her milk, and she's much more temperamental. It's not unusual for her to cry for no apparent reason, although I'm sure she just feels yucky. Still, Ken and I need to sleep SOME time, so it's been a rough two days. She wants to eat every two hours, and eat less at each feeding. I refuse to allow this, because even in the hospital, she ate every three! I can't go backwards! We see the pulmonologist on Wednesday for a follow up from the hospitalization. I also have to reschedule the three doctors' appointments we needed to cancel last week, since she was in the hospital.

Saturday, July 4, 2009

Home Again!

We are back home with Andrea again. She was discharged from the hospital this afternoon. In the good news department, the pulmonologist treating her in the hospital decided to discharge her without the diuretics she's been taking for about a month. That means we don't have to do blood work any more. I believe Andrea got the flu from one of her trips for blood work, so I'm thrilled to be able to skip the weekly visits.

As happy as we are to have Andrea home, she is still a bit sick. We have a nebulizer and Abuterol to give her breathing treatments, and she has a cough especially when eating. Still, she's much better, and we anticipate her continuing to get well.

She's crying now... I have to go. Will try to post more tomorrow.

Wednesday, July 1, 2009

The Waiting Game

Andrea is continuing to hold her own. She is an amazing baby, and puts up with so much. Today, the doctors decided to put in an IV, "just in case". Since she started having fevers, it is better to have one in, ready to go. The hospital brought down two NICU nurses to get the IV in, as well as to draw some blood for testing. They're running a blood culture (looking for bacteria in her blood) blood counts (especially white cell levels) and electrolytes. So now we wait again for results. It takes 48 hours or so for the bacterial to grow from the culture.

Since Andrea is having fevers, the doctors have taken her off the diuretics. Fevers can be dehydrating, and the medications don't help. The pulmonologist I spoke with today is hoping to be able to keep her off them, so when she goes home, we won't have to keep having blood work done. It all depends on how she responds.

The medication she's taking for the flu should help her get better, faster. The doctor told me that it shortens the duration of the illness, and can reduce the severity of the symptoms. Even so, we're probably going to be in the hospital for much of the weekend, if not all. The first 5 to 6 days are supposed to be the worst of it, so we're halfway done today. (I hope, please God!)

Thank you for the encouraging emails and comments. We need those thoughts and prayers.

Tuesday, June 30, 2009

Day Two in Morristown

Ken and I switched shifts today - I dropped Kenny off at camp and took over at the hospital, while Ken went home to shower and then off to work.

Andrea had an OK overnight, managing to eat every few hours. Unlike when she's healthy, Ken had to wake her to eat. This is crucial, since we need to avoid having her become dehydrated.

A diagnosis of Influenza A has been confirmed, so Andrea was started on an anti-flu medication. So far, she's only had one dose, and it's likely that she'll get sicker before she gets better, even with the medication. Just recently, she started running a fever again. (She'd been fever free since lunchtime yesterday.) So far, it's not terribly high (100.4 F) and she hasn't been given any Tylenol yet.

During the day today, Andrea has mostly slept. As over night, I've had to wake her to get her to eat, and she's not managing as much food as she's eaten in the past. We're lucky to get 3 ounces into her. It's scary, because she has developed a cough, and eating will set her off. She's desatted to 68 while eating, and there's so little we can do about it. It's just so hard to watch her struggle.

The positive news is that as of right now, Andrea is holding her own. She's still in the general pediatrics wing, as opposed to PICU (Pediatric Intensive Care Unit) and she's on between 1/4 and 1/2 liter of oxygen, which is no higher than she got at home. We spent so much time sitting at her bedside waiting for her to come home, it's hard to go back again. Also, I miss the incredibly individual attention she got in NICU. Here, we HAVE to stay 24/7. The nurses are watching her monitor, but they're not providing the almost one on one care that we got so used to in our first experience. I know it's because she's "not that sick" (to quote the pulmonologist) but it makes our lives so much harder than we wish they were.

I cannot post to Blogger from the hospital. I have to wait until I'm home. I do have email access though, so notes are welcome. I just might not be able to write back to everyone. We're getting by as best as we can.

Please keep praying. I know many people stopped following the blog because I wasn't posting. Truthfully, day to day life at home with Andrea was mostly normal. Writing about home life with her was similar to any newborn baby. Also, caring for her at home left little time to blog, unlike her hospitalization, where I could write once I was back home, and the NICU/SCN nurses were caring for her. Still, even when I'm not blogging, WE NEED PRAYERS. If you know people when stopped reading, send them back to us. Every prayer helps. They got her home the first time, and they'll get her home again!

Monday, June 29, 2009

A Big Bump

Andrea is back in the hospital. She woke this morning with a slight fever (100.5) and went to see her doctor. By the time we got to the office, she'd developed a wheeze. The doctor didn't like the sound of her lungs, so arranged for us to see a pulmonologist immediately. His take was that she probably had a virus of some kind, and we could take her home and watch her all night, or we could admit her to the hospital. We opted for the hospital.

So, as I type this, Ken is keeping company at Morristown Memorial with Andrea. Right before I came home with Kenny George, I took Andrea to x-ray, and we're waiting to see what they have to say about her lungs. We do know that she has Influenza strain A, which is what caused the fever and most likely the wheezing. The good news is that, so far, her fever went away without medications, and she's still eating fairly well. The bad news is that ANY illness of this type in a small baby (preemie or full term) is dangerous. Fortunately, there is a lot the hospital can do to help Andrea. They can provide additional oxygen support, IV fluids, medications for the congestion. The bad news is that there is little they can do about the virus itself. Once again, we are back to "wait and see".

I know many of you have continued to pray for Andrea. We ask for those prayers right now. We are more scared than we've been in a while. We know Andrea is a fighter, and she's already got her game face on. She's bearing up well to the procedures and we know she'll get through this, too. But please, Pray anyway. It got us this far - we just need to get a little further.

I'll try to post again when there's more news.

Tuesday, June 16, 2009

One Week Later


Well, we've been home just over a week (it's actually 1:40 a.m. Tuesday morning) and we're trying to find a routine. Andrea came home with oxygen, an apnea monitor and a pusleOx monitor. We've been managing with the equipment well enough, except that we average 20 to 30 "false alarms" on the apnea monitor every day, most of them in the middle of the night. Andrea sleeps about 4 hours at a clip, but I'm getting up every few minutes to deal with the monitor. We've been experimenting with the system, trying to find better places on her body to put the leads and adjusting the temperature in her room, and have made some progress. The problem is that we can't just turn off the machine, because there is always the fear that the next alarm will be a legitimate one. We see the pulmonologist on June 29, and maybe she can make some adjustments to the program.

On Monday morning, Mom and I had to take Andrea to Overlook Hospital for some blood work. Because she is on diuretics, her pediatrician wants to monitor her electrolytes. Additionally, since Andrea has a history of hemoglobin low enough to warrant transfusion, the doctor ordered a CBC to make sure her blood counts are adequate. I have to say, Andrea behaved like a trouper, and the phlebotomists were awesome! Even though Andrea is much bigger than she was, she still has tiny arms and even tinier veins. The phlebotomist got her vein on the first stick of the needle. Now, we have to wait for Wednesday when we go back to the pediatrician to see if all is OK with the blood. We'll probably have to repeat the process until Andrea is no longer on the diuretics.
Last Thursday, we had a visit from a visiting nurse. This experience has been surreal. Despite the fact that we have two children already, we endured a visit where we were instructed in such things as "don't shake the baby", and "always put her in a rear facing car seat in the car". Considering parents are sent home with newborn babies all the time, it was weird that we had to listen to all the "Parenting 101" details. Fortunately, I think she's only coming back one more time to do a weight check.

Have more to write, but I'm too tired. Will shoot for tomorrow.


Wednesday, June 10, 2009

Life at Home


Now that Andrea is out of the hospital, I'm not going to post every day. I'm shooting for every other day, but I may not pull it off.

We made our first outing today, going to the pediatrician and the opthamologist. The hospital required us to get Andrea to the pediatrician two days after discharge. So, we learned that she's gained weight (a great sign!) and now weighs 6 pounds 2 ounces. (In the outside world, we're back to English measures) and is 18 inches long. We were anxious for the appointment, because Andrea was discharged on several medications, in addition to the oxygen. Two of her medications are diuretics, so the doctor ordered blood work for Monday, to make sure Andrea's electrolytes are stable. She's also having a blood count done, so we can make sure her hematocrit is good.

After the pediatrician, we were off to the opthamologist to make sure Andrea's eyes are ok. There is a concern in preemies that the retina don't develop properly. Andrea's right eye is now completely normal - what appeared to be a problem was just her prematurity. Her left eye is resolving, but still not normal, so we follow up in three weeks.

That's all for now. Being home with Andrea is more tiring than the trips to New Brunswick, and I need some sleep. She'll be up in a few hours to eat, and I'll need to be there too!







Monday, June 8, 2009

At Long Last


One Hundred and Two Days after the odyssey began, we are ecstatic to report that Andrea Eda Lindsley is home. She is on oxygen, and has several follow up appointments in the coming months, but she is here with us. We are emotionally and physically drained, and I need to sleep. I will write more tomorrow, but for now, thank you for all you've done in getting us here. We would never have made it without the prayers and support. I found today's quote more than three months ago, and have been saving it for this day. We kept faith that this day would come, but we had a hard time believing it would happen.


Here is Andrea in her crib, in her own room. She's still small, so the crib looks enormous! She is now 44 cm (17.3 inches) and 2610 grams (5 pounds, 12 ounces), making her the size of a regular newborn.


“It always seems impossible until it's done.”
Nelson Mandela

Sunday, June 7, 2009

Those Pesky Lungs


We know for sure that Andrea still needs oxygen. Her nurse today tried to take her off it, and she managed only about 15 minutes before her sat levels went too low and her breathing rate shot up. It's frustrating, because the oxygen is a lot to manage. In addition to being connected to a "concentrator", Andrea will remain on a "pulse ox" meter and an apnea monitor. She's used to them, because she's connected similarly in the hospital, but they'll make it hard to get out and about with her. She has doctors' appointments and clinics after discharge and we need to bring the equipment with us. The best thing about taking her off oxygen today was that at least we know it's necessary for her to have it at home, at least for a while.


I've mentioned before that Andrea is on "feed on demand" and can eat as much as she wants. The problem with that is she retains fluid, and needs to be on a diuretic. Diuretics can cause problems with electrolyte levels in her blood. Yesterday, when her blood was tested, her potassium level was low. We're worried, because once she's home, we have no way to monitor her levels. It's scary to lose the security of all the tests.


Andrea lost a tiny bit of weight yesterday - 15 grams. All things considered, that's nothing to worry about. She's still over 5 pounds, and looks good. The concern will be once she's home, to make sure that she continues to gain weight.


I think the house is finally ready for her to come home. Her room is done, thanks to massive efforts from Mom and Dad and Uncle David. We finally managed to get a glider, so there's something to sit on when we're feeding Andrea. In the beginning, we're planning to keep Andrea pretty much restricted to her room. The concentrator for her oxygen is in her room. We have a 50 foot cannula, so we CAN move around the house, but the monitors have much shorter leads. We'd have to unplug all the other cords to be able to leave her room. Until we work out logistics, we're staying in one place.


"Keep on going, and the chances are that you will stumble on something, perhaps when you are least expecting it. I never heard of anyone ever stumbling on something sitting down."

Charles F. Kettering

Saturday, June 6, 2009

100 Days


In many elementary schools in New Jersey, the children in kindergarten and first grade count the first 100 days of school (as they learn to count to 100). On the hundredth day, there is usually a celebration. I was reminded of this as I went to see Andrea today, because we are marking our one hundredth day in NICU/SCN. We didn't have a party like the kids in school, but we celebrated the milestone with gratitude that we made it this far.


Andrea had her blood transfusion last night, and is markedly better today. She is much more pink and she was awake and active after eating. She can't eat for 8 hours around a transfusion, so she spent a lot of today playing catch up. She ate 150 ml (5 ounces) at her 8 a.m. feeding! Her weight today was 2540 grams, or 5 pounds, 9.6 ounces. She gained 140 grams in 24 hours, despite being on a diuretic.


We will hopefully have more information about discharge on Monday. The team in on the weekend just covers the ward - I have to wait for the attending doctor to come back during the week. As always, I'll keep you posted.


“Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow - that is patience.”