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

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.

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!

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.

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!

:-)