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.”

Friday, June 5, 2009

Not Just Yet

Well, we are somewhat saddened to report that Andrea is not yet home. Ken and I "roomed in" at the hospital last night, and all was basically fine. The monitors caused more sleep loss than Andrea did. The alarms would sound if she moved to much, or if the sensors were loose. For a variety of reasons, the decision was made to keep Andrea a few more days.

Yesterday afternoon, Andrea was examined by a pulmonologist. It was his recommendation that she remain in the SCN at least through the weekend. Since Wednesday, many changes have been made to Andrea's regime, and the doctor wanted more time to assess how her body was going to react. She is now "feed on demand", meaning that she can eat as much as she wants whenever she wants. Since she's taking in so much fluid, she is on two diuretics, which can cause problems with her electrolytes. She is on 100% oxygen with no mixture, as opposed to the 25% mixed with room air. The pulmonologist wanted some blood tests and x-rays to evaluate Andrea's reaction to all the changes.

Ken and I were concerned, too, about taking Andrea home because she is not herself. She has been getting progressively paler, and is pretty lethargic. Usually, she has a period of wakefulness after eating, and is alert and active for about an hour or so. Since Wednesday, she eats and sleeps. In the 30 hours I was in the hospital from yesterday to today, I think she was her usual feisty self for about an hour. Ken and I are concerned that she may need another blood transfusion. This is how her symptoms began the last time she needed blood.

Update: Breaking news as of 8 p.m.: Just got off the phone with Andrea's nurse. The blood count that they did at 7 p.m. came back really low. Normal is 32 to 36. Andrea was at 25! So, some time tonight, she's getting blood. She just ate at 7, and they can't transfuse her until two hours after her last meal. The nurse's estimate is that she'll get blood about 10 tonight. It takes 4 hours for the transfusion, and then she needs to wait two hours after it's completed before she can eat again. Whoever is on with her tonight is going to have her hands full of crying, hungry baby!

In some ways, it was hard to leave Andrea behind. Harder this time than when I was first discharged in early March. Back then, we KNEW she needed to be in NICU, or she wouldn't survive. Now, it's much more of a judgement call. Maybe she would have come home and been 100% fine. Or maybe we would be rushing back to the emergency room tomorrow. We can't tell, so we have to trust we've made the right choice. Now, based on the note above, we KNOW we made the right choice!

Please continue to pray, and keep reading the blog. I'll keep updating information as we have it. We are definitely at the "any day" now phase, but we don't know when. Babies are not discharged over the weekend, so we're on hold until Monday. At that point, the doctors will have more data to make better decisions.

"It ain't over til it's over"
Yogi Berra

Thursday, June 4, 2009

Happy Due Date Andrea!

It's 4:30 a.m., and I'm wide awake. Today is Andrea's due date, and hopefully the day before we bring her home. As they say in the NICU/SCN, it's day of life 98. I have so much on my mind, I can't sleep. I have no new baby information since I posted last night, but I wanted to commemorate what should have been her birthday with a quick post. If I can add more later, I will.
I'm at the hospital now, and since we'll be here over night, I brought a laptop so I could stay connected to the world. Andrea has been getting fed on demand, as I mentioned yesterday. She gained 65 grams in 24 hours, making her 2365 grams, or 5 pounds, 3.4 ounces. This is despite being on a diuretic to prevent edema.
We're waiting for things to happen now. Andrea will be sent home with some prescriptions, for vitamins and the diuretic. We can't leave until we fill the prescriptions and bring them in for the nurse to instruct us in the administration. As of now, I still don't have the scripts! This is a lot of hurry up and wait!
More later, if anything happens worth blogging!
“Your birthday is a special time to celebrate the gift of 'you' to the world.”

Wednesday, June 3, 2009

The Final Countdown

We're in the home stretch, by all appearances. Andrea had her MRI (required for discharge) at 6:45 this morning. We don't have results yet, but it's highly unlikely that anything will emerge that will derail her discharge.
Ken and I are getting training tomorrow afternoon in the use of the oxygen equipment, and my AWESOME brother-in-law is coming tomorrow night to assemble the crib. Ken got the car seat installed, and Andrea passed her "car seat test" in the SCN this morning. The babies get strapped into the car seat and monitored for an hour. If the heart rate, breathing or oxygen saturation rate drop too far, the car seat is no good for the baby and you need another. As I said, Andrea did fine!
Andrea during her car seat test. She slept through the whole thing!

Andrea is on "feed on demand" now, meaning that she can eat as much as she wants, whenever she wants. To keep her from retaining too much fluid, she's on a diuretic. It'll be interesting to see how she gains weight when her caloric intake isn't being controlled.

Tomorrow, Ken and I are "rooming in" at the hospital. I will try to post, but don't know what to expect from the evening. We'll be caring for Andrea completely on our own, although the nurses will be watching the monitors. Still, if there is no post tomorrow, do not assume there's a problem. Assume I couldn't get to a computer.

“Every child is a thought in the mind of God, and our task is to recognize this thought and help it toward completion.”
Eberhard Arnold

Tuesday, June 2, 2009


Sorry for the "SHOUTING", but we're thrilled to announce that today, Andrea broke the 5 pound mark. (Barely) She is now 2270 grams, or 5 pounds, 0.07 ounces! In addition to being the size of a near term baby, she has also quintupled her birth weight, something that most babies do not do in the first 4 months of life!

The other big news is that Andrea MAY be coming home on Friday, June 5, 2009. Yes, THIS Friday. We have moved into crisis mode, and are furiously working to prepare the house. Mom and I bought a crib in a panic today, so at least Andrea has a place to sleep. There are several things that have to happen before we can bring her home, but the hospital is working on their end, and we're working on ours.

First, Andrea had an MRI of her brain today. We'll get the results tomorrow. This is required for all preemies prior to discharge. She will be coming home on oxygen, so we need to have training on the use of the equipment. Ken and I will room in at the hospital Thursday to Friday, where we'll take care of Andrea while the nurses watch the monitors. We need to have oxygen delivered to the house. We have to bring our car seat to the SCN for a check to make sure it is appropriate for her. We need to see the pediatrician on Monday, so I have to make that appointment ASAP.

We know that the reason we are here now is because of the prayers, love and support of our families and friends. Please continue to pray for us as we undergo this happy, exciting, yet scary and stressful transition. Also, we know that many of you are anxious to meet Andrea. Please know that we want to show her off, but we need to make sure her transition to home is smooth, and she doesn't get sick. For the immediate future, visits will be severely limited. Please do not "drop by". Much as we want to see people, Andrea's health has to come first. You all got us to this point; we ask that you be patient just a bit longer.

“You will come to know that what appears today to be a sacrifice will prove instead to be the greatest investment that you will ever make.”

Gorden B. Hinkley

Monday, June 1, 2009

Drama Queen

I like this picture - Andrea has been an amazingly strong baby through her ordeals, and it looks like she's had about enough! In reality, she continues to work hard at getting better. She tolerates the tests and is getting stronger every day.

The new rotation of doctors started today. Andrea had an echo cardiogram that shows her heart is fine. She finished her third day of Lasix, which has not dramatically decreased her need for oxygen. Her hematocrit number was not bad enough to justify a transfusion, and the number of immature blood cells forming is good.

Andrea continues to get better at nursing - she can maintain a latch for a longer period of time, and isn't so exhausted at the end. She is such a good eater that she devours her bottles after nursing. She has also progressed enough that I'll be allowed to try nursing at the noon feeding as well. The goal is to have Andrea get nutrition without burning too many calories getting it. And of course, the milk she gets nursing is not fortified, so we continue to supplement with the bottles to make sure she continues to gain weight.

Speaking of weight, Andrea is 2220 grams today (4 pounds, 14.3 ounces). Since she was still on Lasix yesterday, I was not expecting such a weight gain, but we're happy about it. She'll be over five pounds by the time she comes home. Right now, there is no definite date for Andrea's homecoming. The new team of doctors will review her progress and decide if she can come home on oxygen, or if she'll stay in SCN for a bit longer. We want to take her home when the doctors are sure she's ready.

“Strength does not come from physical capacity. It comes from an indomitable will.”
Mahatma Gandhi