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