Tuesday, March 31, 2009

Slow and Steady Wins the Race

Now that I'm on my own, I'm finding a new routine for my visits to Andrea. The drive is long enough that I can only go once a day, so I try to optimize the time I'm there. Today, I had to see my doctor for my weekly "wound check" for the incredibly icky surgical infection, so that was part of the visit. I discovered today's quote when leaving the doctor's office, and I need to provide a little background for why I found it so significant.

Many of you know that my sister-in-law was diagnosed with Multiple Sclerosis last summer. She has been dealing with her own ickiness as a result. The only medication she can take is an injection, and she needs it three times a week. We love Tina, and want very much for her, and everyone else with MS, to be cured. Barring that, we'd love to see an oral medication. Last September, Ken & I rode bicycles on a 100 mile fundraiser for MS. Well, as I was walking from the doctor's office back to the hospital (the two buildings are connected by a walkway) I noticed a beautiful mural on the wall. I stopped to look, and learned that what I was seeing was a sculpture called "A Hope and A Promise". It was donated by Women on the Move, part of the New Jersey Metro Chapter of the National Multiple Sclerosis Society. I grabbed a flier explaining all this, and on the back was today's quote. I have included it here as positive thinking for Andrea, but also for Tina. With hope and prayers, Andrea will come home, and Tina will be cured.

So, as for Andrea's update today, she is continuing to do well. She is adjusting to CPAP, and in the next few days, they will stop the supporting breaths she's currently getting. She'll still have some oxygen support, but all the breathing will be on her own. She gained 50 grams, which more than made up for what she lost yesterday. She's now 750 grams, or 1 pound, 10.45 ounces. That also reflects a gain of 300 grams from her birth weight, in about 4.5 weeks. If she continues to do well, they will stop giving her some of the vitamin supplements she has been receiving. She's still getting 13 ml of milk every 3 hours, and has gone several days without needing blood. When I visited today, I was able to cup my hands on her while she dozed in the isolette. One problem with CPAP is that the pressure of the air forces Andrea's mouth open, so air and oxygen is lost from her mouth that should be going into her lungs. I was told to keep nudging her mouth closed while I was "holding" her.

When we visit, we are encouraged to talk to Andrea, since the sound of our voices helps her grow stronger. However, it is hard to maintain a conversation for long, with someone that doesn't talk back. (Remember, I live with two 8-year-olds.... I'm used to talking back!) Today, I decided to sing to Andrea. I spent half an hour going through all the songs I used to sing to Kenny, and some of my personal favorites from my church choir days. It made for a very relaxing way to visit. Tomorrow, I'm hoping to start my "kangaroo care" experience. Hopefully, the nurse can take a picture for me.

Andrea is taking a break from pink today. I was so excited to see her in a yellow hat. She needs the hats because of the CPAP sponges, so I'm sure her wardrobe will expand over the next few weeks.

Thank you all for your continued interest in Andrea's story, and your support of my blogging efforts. Keep praying for her, that she remains on her slow and steady course.

"Hope sees the invisible, feels the intangible, and achieves the impossible." Anonymous

Monday, March 30, 2009

Never a Dull Moment

You can see Andrea about to push out her CPAP tube.
Today was my first day completely on my own. Mom is back home getting ready to leave on a long-scheduled vacation (which I insisted she still take) and Ken is at work, since SOMEONE in this family needs to make an income. As soon as the nurse packed my icky wound, I left for the hospital. I always have a moment of dread as I walk into the NICU, wondering what I'm going to face each day. It is infinitely easier to go in with someone - venturing in alone is always harder for me.

Much to my relief, Andrea was happily snoozing away, still doing well on CPAP. I took pictures, but left my camera in NICU, so I'll have to post one tomorrow. For a few days, we were thinking that Andrea had grown a little. She has been gaining weight, but was looking thinner. I learned today that she is now 33 cm, or 12.99 inches. That's almost an inch longer than last weekend. She has dropped a little weight since yesterday, (10 grams, or .35 ounce) but that's not unexpected, and not enough of a loss to worry about. Today's nurse said it's better to look at the whole week, because there will be up days and down days.

While I was visiting Andrea, I learned what one of the worries with CPAP is. Andrea likes to grab things (it is a very good sign that she can grasp objects). She had been pulling at the tape on her face from the ventilator. Well, the CPAP tube is not taped down like the ventilator. While I watched, she got her hand under the tube and pushed the whole thing out of her nostrils. Now, Andrea CAN breathe on her own, but she really needs the extra support of CPAP. I am proud to say that I did NOT panic, at least not on the outside. I found a nurse and asked if this was something we should be concerned about, or was I overreacting. The nurse also did not panic (I don't think they ever do!) but did come over and reconnect Andrea to her tubes. This was the first time she'd managed to dislodge the equipment, but now that she knows she can do it, I doubt it'll be the last!

Please continue to keep Andrea in your prayers. We are moving forward, slowly and steadily. Every good day puts us one day closer to having her home.

"I know God will not give me anything I can't handle. I just wish He didn't trust me so much.”
Mother Teresa of Calcutta

Sunday, March 29, 2009

More Fun Without the Ventilator

You can see in the picture that Andrea had another new experience today. Without the respirator, she can have things in her mouth, and so she was given a pacifier for the first time. Her nurse explained that she gave Andrea the pacifier during her feeding so she would learn to associate the sucking experience with feeling full. The smallest size pacifier is still big for Andrea's little mouth, but she managed. The top was cut off to accommodate the CPAP tube - that's why it looks strange.

You may notice in this picture that Andrea has a small golden heart stuck to her back, along with all the other sensors and wires. This is actually her temperature sensor. Andrea is in a climate controlled environment, and the heart keeps constant track of how warm, or cold, she is. Sometimes, it will come loose, and a monitor will display "baby cold", so the nurses know to check on her. If she's wearing a hat, sometimes she gets too warm, and the nurses will be alerted to that fact as well. She does have her temperature taken every three hours, but the heart sensor provides more constant information.

Andrea has continued to adjust to CPAP. Her oxygen settings were lower today than yesterday, and she has still not had any apnea episodes. Her feedings continue at the 13 ml level, although she did drop some weight. She is back down to 710 grams, which was expected. While on the ventilator, she had the additional weight of the equipment. With the CPAP, everything is removed before she's weighed, so these numbers are much more accurate. She was measured at 6 p.m. tonight - I'll know tomorrow whether or not she's added any length. Her "nest" seems bigger to us, so we believe she's grown. We just need confirmation from the nurse in the morning.

Andrea's favorite sleeping position is on her stomach. She needs less oxygen and certainly looks more comfortable when she's on her belly. We know that the rule with infants is "back to sleep", but because she has supported breathing, Andrea can indulge in tummy sleeping for now. I'm horribly jealous, as my incredibly icky wound keeps me from sleeping on MY tummy. Life is just not fair sometimes!

Now that Andrea is on CPAP and adjusting well, we can begin "kangaroo care" in the next few days. Kangaroo Care is skin to skin cuddling between the baby and parents. Andrea will wear nothing but a diaper (which is all she wears now, anyway) and we have to wear shirts that open down the front so she can be nestled against our chests. It's been shown to really improve the well-being and recovery (for lack of a better word) of preemie babies. We're very excited, because it'll be the first time we're really able to hold Andrea. It's also a really intimidating thought, because she is still SO small. However, we believe that the NICU staff would not allow anything for Andrea that she's not ready for, so we have to swallow our apprehension and be brave for her. Anything that helps her get well faster is fine with us.

As always, thank you for your prayers and positive thoughts. We are blessed that Andrea is progressing so well and you all share the credit for her success.

“As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit.”
Emmanuel Teney

Saturday, March 28, 2009

A Big Change!

A moment that we have been dreading, yet hoping for, has arrived. The ventilator is gone! You can see in today's picture that it's gone, and has been replaced by CPAP. At first glance, the CPAP looks worse than the ventilator, but it really is a step forward for Andrea. Instead of a tube in her trachea, she now has little prongs in her nostrils. The prongs are connected to a tube, that is fastened to her hat to keep everything in place. Her head is so small, the tube dwarfs her face, but she looks more comfortable without the tape on her face. We knew that the doctors were discussing the removal of the ventilator, but didn't know for sure when it would happen. We know it is necessary, but it's also scary to contemplate the loss of the protection the ventilator gave Andrea.

The ventilator was removed at 8:20 this morning. As of our visit at 2:00 this afternoon, Andrea was adjusting well to CPAP. Her nurse told us it was common for babies to need more oxygen while adjusting to CPAP, so we're not concerned that Andrea is on higher oxygen right now. Her head will get a little squished from the sponges that hold the tubing, and her nostrils will be a little larger from the pressure, but those are minor issues, and will eventually resolve once she's not on CPAP any more. The tan strip on Andrea's chin is holding her feeding tube in place. Without the ventilator, she generates more saliva, and the tape keeps getting unstuck. Andrea is trying to push THAT tube out, too, but she needs to keep it for a while longer. She cannot have a bottle or nurse on CPAP.
So far, Andrea has not had any apnea issues, which we pray will continue. Her nurse told us that Andrea is trying to make some sounds, and in a few days may be able to actually cry. Since her throat is sore from the tubing, at least in the beginning, her voice will be hoarse and raspy. Still, those cries are something we can't wait to hear.

At her last weigh-in, Andrea was measured at 740 grams, or slightly more than 1 pound, 10 ounces. However, that was before the ventilator was removed, so she is likely to weigh less for the next few days. Her new breathing equipment is lighter than the old stuff, plus I think they weigh her without the CPAP on at . Since they are still working toward putting weight on her, Andrea now gets 13 ml of milk every three hours. Right now, that seems to be what she can tolerate and digest in the time frame they're looking at.

Ken got a chance to be hands on today. It's not often that he can time his visits for the baby checks, which usually take place about 20 minutes before a feeding. The feedings are every 3 hours, at 3, 6, 9, and 12. Ken was able to take Andrea's temperature and change her diaper. It's harder than you'd think to change Andrea. She's so small, and the wires really get in the way. Still, it's a treat to care for our baby, even under such limited conditions.

We are happy the ventilator was removed... it's an important step in Andrea's development, and necessary for her to come home. Still, we are apprehensive, because she no longer has the ventilator providing constant support for her breathing. Please say an extra prayer for Andrea tonight, and continue to pray for her ongoing recovery.

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. "

Eleanor Roosevelt

Friday, March 27, 2009

A Strong-Willed Baby

Note the thumb in her mouth. She's trying to suck it, despite all the tubes and wires!

Thankfully, today was a much less stressful visit to Andrea than yesterday. The problem with her lungs was determined to be purely mechanical. (Although she is probably going to have lung problems as she grows up) Since Andrea's trachea is so small, and she is an active baby, it's possible for her to dislodge the ventilator tube when she wiggles. It appears that the tube shifted from its desired location above both lungs into the bronchial tube leading to her right lung. As a result, there was no air pressure inflating her left lung. Any air in that one was from her own breathing efforts. After determining the problem, the respiratory therapist was able to reposition the ventilator so that both lungs are properly inflating again.

During today's visit, Andrea was more animated than I've ever seen her. In today's picture, you can see she's trying to get her thumb into her mouth to suck it. She manged to get a finger or thumb in more than once, and made an effort to suck around the breathing and feeding tubes. We also saw her using her tongue to try to push the feeding tube out of the way. She pushes at the tape on her face, too. It is a good sign that she's reacting to the presence of these foreign objects. The ventilator will be gone sooner, rather than later, but she's stuck with the feeding tube for a while. When the ventilator goes, it is replace by something called CPAP (continuous positive airway pressure). CPAP is a tube that goes under Andrea's nose with little prongs (not the correct medical term, but I don't remember what they're called) that go in her nostrils. While on CPAP, she still needs to be fed through the feeding tube. Since the primary concern is the size and development of her lungs, Andrea will have to wait a while before getting to try a bottle or nursing.

In other news, Andrea tipped the scales today at 710 grams, or 1 pound, 9.04 ounces. I can't wait for Sunday night's measurement, either. Despite the weight gains, Andrea is looking thinner in the torso again. I have to assume she's gaining length.

Once again, I got to perform some Mommy tasks. I was able to take Andrea's temperature, and change her diaper. She was very alert when we were there, and her eyes were open much of the time we were interacting with her. It's always a pleasure when the nurses can open the isolette and we can interact with Andrea without the plastic walls in the way. She seems to react to our voices and gets more active and wiggly when we talk to her. This is a catch-22, since we like to see her move, but then she expends too much energy, uses too much oxygen, and burns too many calories. She is soothed by being "held", and we covered her up when she got really loopy.

In comment to an earlier post, my "Uncle Pete" wrote "Hours pass so rapidly, but it is moments like this when life seems to stand so still, and at times so helpless." He was referencing his own journal from 32 years ago, when his newborn son was in the hospital with a congenital heart problem. That baby is now 32, and expecting his second child. I can relate to Uncle Pete's comment, because I can't believe a month has passed so quickly, but I also can't believe that only a month has passed since Andrea came into this world. I know Uncle Pete's son... I grew up closer to him than I was to some of my relatives. When I see him now, it gives me hope that some day, I will look back at this blog as Andrea awaits the birth of HER baby, and wonder how we ever lived through this. It is the support of our families and friends that make this bearable. I would not wish this experience on anyone, but it has driven home how much our people care about us - not just Ken and me, but our parents, siblings, and children. We have had more people reach out to us than I ever expected. The emails continue from ever more distant regions, and they encourage us more than we can say.

Please continue to pray for Andrea, that her development remains steady and uneventful.

"All who call on God in true faith, earnestly from the heart, will certainly be heard, and will receive what they have asked and desired, although not in the hour or in the measure, or the very thing which they ask. Yet they will obtain something greater and more glorious than they had dared to ask.”
Martin Luther

Thursday, March 26, 2009

One Month Old!

We like this picture.... we think it looks like Andrea is just overwhelmed by her lot in life, and is trying to hide her eyes!

I'll warn you in advance, today's post is going to be a long one.

As you can see from the title, we are celebrating one month of life on the outside for Beautiful Andrea the Second. She has successfully navigated her first month in NICU. When we went to see her today, we were given a reminder of how uncertain the future is, and how much farther Andrea has to go before we can bring her home.

When I asked the nurse how Andrea was, her reply was "She's much better now", implying that she had been worse before. Of course, I asked what had happened. Overnight, Andrea had some trouble with her breathing and her lungs. They had to increase her oxygen levels to 70 (It's usually around 25-30) and increase the ventilator settings to the mid thirties. Additionally, on x-ray, it was apparent that her left lung was not inflating as much as her right lung. She spent much of today positioned on her right side to see if her left lung would improve. Another x-ray was ordered to see if the problem was infection or mechanical. If the ventilator tube moves out of position, Andrea's lungs don't inflate properly. Her trachea is so small that tiny shifts of her body can move the ventilator into undesirable positions. By the time we saw her today, Andrea's oxygen was more in line with her normal levels. The doctor I spoke with did say that Andrea is likely to have life-long lung issues, and will be more susceptible to respiratory infections and lung diseases. She'd better not become a smoker.... hundreds of people will be furious! The plan right now is to try to prevent lung damage as her body and lungs grow bigger and stronger. As a result, the respiratory therapists in NICU constantly adjust the oxygen saturation and ventilator pressure.

In the good news department, Andrea's food intake has been increased to 12 ml every 3 hours. There is no better way to get her to gain weight than to get that milk into her. She weighed in at 705 grams today, or 1 pound, 8.8 ounces. She broke the 1 1/2 pound mark! She's slowly but surely closing in on the 1000 gram milestone, which is considered a big accomplishment. She won't be measured again until Sunday night, but she looks skinnier to me, so I'm guessing she must have added some length.

In other exciting news, Mom got to touch Andrea today. Usually, handling the baby is limited to Ken and me, plus the staff, of course. While the nurse had the isolette open for baby checks (temperature, blood pressure, clean diaper, etc.) both Mom & I got a chance to hold Andrea, such as it is. We hold one hand on her head and the other over her chest or legs. It was interesting to see how soothed Andrea was by Mom. Her blood oxygen level had been jumping up and down, but the whole time Mom was holding her, it was in the mid to high 90s. I got a picture of Mom's hands on Andrea... here it is:

To celebrate Andrea's birthday, we left a few gifts today: a medallion with the phrase "Believe in Miracles", an angel pin, a cross enameled with "Hope", and a prayer card that said "I asked for all things that I might enjoy life. I was given life that I might enjoy all things". The nurse will put these items in a sterile bag and tape them inside her isolette. Andrea cannot see much, if at all, but we feel strengthened to have tangible reminders there of how much she is loved, and how many people are praying for her to get strong and come home.

Not to detract from Andrea (since this is her blog), but many people are still curious as to how I'm doing. I'm relieved to say that my incredibly icky wound is healing nicely. (It is still incredibly icky, just not as deep) I have started driving for limited amounts of time, just never alone. I've managed to get to and from New Brunswick, which is a major accomplishment. I get fatigued easily, which is probably a combination of emotions and my body's response to trying to heal. Still, I'm in better shape than I was a week ago.

Thank you to all who follow this blog, both publicly and privately. I get some therapeutic benefits from writing it, and your comments and emails encourage me to keep writing. You have to read my sister's comment from yesterday... it made me cry. Please continue to pray for Andrea, and if you have not already done so, add her to prayer lists at your parishes, synagogues, mosques, etc. We believe God has gotten her this far, and we can only pray and hope she will continue to do well.

"I have held many things in my hands, and I have lost them all; but whatever I have placed in God's hands, that I still possess."

Martin Luther

Wednesday, March 25, 2009

She's Gotten so Big!

While visiting NICU today, we met a respiratory therapist who was in the operating room when Andrea was born. Because she was a preterm delivery, and we had some time to prepare for delivery, (as opposed to being in a crisis situation) there was a whole team of neonatal personnel in the operating room. Since everyone was gowned, and I was freaked out, I never attended to who anyone was. While we were talking to Andrea in her isolette, the therapist came over to look at the ventilator settings and perform some routine functions. When she finished, she looked at Andrea and exclaimed "She's gotten so big!" Now, granted she's gained about half her birth weight, and has grown an inch and a half, but so far, no one has commented on how big Andrea is. Usually, we hear how small she is! Still, since this particular therapist had not seen Andrea in some time, the change in her appearance was much more dramatic.

Shortly before we left NICU, the doctors came by on rounds. As yesterday, Andrea is toward the end, because she is not critical. (Thank you, God for that blessing!) I spoke with the doctor briefly, and the plan is to continue supporting Andrea's breathing with the ventilator and give her time to get bigger and stronger. Basically, there is not much that needs to be done with her other than that. Granted, I'm oversimplifying, but she's kind of in a holding pattern right now. The nurses test her blood and give her transfusions when she needs them. They monitor her glucose and oxygen levels. They take measurements throughout the day to make sure she's digesting her food and her temperature is steady. They watch a million different things to make sure Andrea is progressing as she should. But right now, there does not seem to be any major area of concern, for which we continue to be grateful.

Now that Andrea is filling out, and starting to look more baby-like, I'm going to try to post a new picture every day. Some days she is more cooperative than others. It'll be easier to take her picture when she's out of the isolette. Right now, I do the best I can!

Please keep Andrea in your thoughts and prayers. Tomorrow she will be four weeks old, thanks to the excellent care she is receiving at Robert Wood Johnson and the prayers and positive energy of all who care about her.

"Faith can move mountains, but don't be surprised if God hands you a shovel."
Author Unknown

Tuesday, March 24, 2009

Beautiful Andrea the Second

Margaret, Mom and I went to see Andrea today. In many families, people wind up with nicknames, under unusual circumstances, that somehow stick. Margaret has been known to all the nieces and nephews as "Aunt WooWoo" since Stefania was born almost 12 years ago. While visiting with Andrea, I found myself explaining to the nurse (another one of our favorites, by the way!) how Margaret became WooWoo. The nurse asked if I knew Andrea's nickname. As you may or may not know, Andrea is named after my mother, and her middle name, Eda, comes from Ken's mother. Well, during one visit, the nurse referred to Mom first as "Big Andrea", then, not liking how that sounded, tried "Old Andrea". Mom, realizing that neither was complimentary, recounted a story from Kenny G's early life, where he referred to her as "the Beautiful Grammy". From there, "Beautiful Andrea"was born. The nurse decided that Mom is Beautiful Andrea the First, and our baby is Beautiful Andrea the Second.

We are pleased to report another good day for Andrea. She tiped the scales at 680 grams, or 1 pound, 7.98 ounces. Almost at the pound and a half mark. She is continuing to fill out, getting more flesh over her bones. Her ears are no longer flat, but have some of the whorls of full term babies. Her milk consumption continues to increase. Like the rest of us, she seems to be a good eater.

We were in NICU during rounds again today. Andrea is now toward the end of the process, because she is not (Thank God) a critical case. The doctors see the more ill babies first. It was interesting to note that most of the conversations revolved around tweaking settings and making minor adjustments to levels of things. There are no red flags right now, and nothing to be alarmed about, other than the fact that she's 12 inches long and weighs less than a pound and a half. Her ventilator settings are constantly adjusted during the day. Andrea's nurse told me today that sometimes Andrea moves so much, she depletes the oxygen in her blood. (Similar to us getting short of breath while exercising) To provide extra support to her while she grows, she's sometimes given additional oxygen.

Mom & I saw the doctor for the first follow up to all the wound care I've been getting. More good news there - the thing is healing very well, so they tell me. As before, I find it all to icky to contemplate. We did learn (sort of) the reason for the complications that led to Andrea's dramatic, preterm arrival. When she was born, the placenta was sent to pathology for evaluation. My doctor had the report, and was able to share with us the findings. There were several areas of infarctions, or areas where blood clots had formed and the placenta had died. It was functioning so poorly that Andrea was barely receiving enough support to stay alive, never mind grow properly. The unfortunate part is that the pathologists do not know what caused the problem, so it would be impossible to predict whether or not it would happen again. No worries, though... after all this, we're done, anyway!

Please continue praying and sending Andrea positive energy. We love having positive things to report, but hope that the good news will not dissuade people from continuing to support Andrea. One doctor told us that most preemie babies come home pretty close to their due date. Andrea needs another 10 weeks or so to be "full term". Keep the support coming, please!

"Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD."

Psalm 31:24

Monday, March 23, 2009

Fortifying Andrea for the Future

We had another eventful visit to Andrea today. She is looking GREAT - really gaining weight and starting to look more like a baby. Her fingers are almost chubby, compared to where they started, and she has great muscle tone in her arms and legs. She is still thin compared to full term babies, but she has filled out so much from her starting weight. Once again, she has not gained any length, still measuring at 12 inches, but in a way that's good. It's allowed her to put some flesh and maybe even fat over her skeleton. The nurses and doctors frequently remind us that she's still small for her age. It'll take some time before she's completely caught up.

Once again, one of our favorite nurses was caring for Andrea today. She told us that there is a plan to remove the ventilator at the end of the week, if all goes well. In working toward that goal, Andrea got an additional blood transfusion today to boost her blood counts. The down side to that was she needed to have an IV line inserted. They removed her line on Saturday, so she needed to get stuck again. When she gets blood, she can't be fed, so they need to give her IV nutrition. In preparation for removing the ventilator, the team is watching her oxygen levels and trying to have her gain as much weight as possible. On Thursday, she'll be 4 weeks old, or what would have been 30 weeks gestation. I guess there's enough data to support the decision to remove the tube. Honestly, the thought scares us to death, but it'll scare us whenever they decide to remove it. We elected to have Andrea at Robert Wood Johnson because the hospital, staff and NICU are the best in the state. We have to trust that they know what they're doing, and will do the best they can for Andrea.

We met a new doctor (new to us, I mean) today. He spoke to us briefly about how unusual Andrea's progress has been so far. His comment was "whoever you're appealing to, continue to do it". We mentioned that we have family and friends from every religion praying for us, and we do believe that is a major factor in Andrea's recovery. While we were once again warned that (to quote the financial people) "past performance is no guarantee of future returns", we continue to believe that faith, prayers and positive energy will see Andrea through the challenges that await her. Keep those prayers coming.

"All human wisdom is summed up in two words - wait and hope." Alexander Dumas

Sunday, March 22, 2009

Gaining More Weight

I got to see Andrea today...thanks to my good friend from Demarest MS who, despite food poisoning, dragged herself to Livingston just to chauffeur me to the hospital. Thank you also to her husband, who got stuck doing all the driving. I would have been stuck without them. Ken was on "Kid Care" duty, watching the two boys so I could go see Andrea.

I have to say, Andrea is looking good! She's getting measured later tonight, so we'll find out if she's grown at all, but we can tell she's gained weight. She now weighs 640 grams, or 1 pound, 6.5 ounces. She's gained almost 200 grams from her birth weight. Her fingers and toes are looking more like baby appendages, and even her arms and legs have some muscle definition. She is getting cheeks, at least on her face. The nurses warned us that her butt will take the longest to develop.

Yesterday, we were told that Andrea's food was going to be held at 10 ml every three hours. Today, we were told that she's getting 10.5 ml instead. We think that they're pushing the envelope to see how much food she can tolerate. That remains the most effective way to get calories into her, and the best way to help her gain weight. The more food she can digest at each meal, the more weight she can gain.

Andrea's respirator settings were decreased slightly today. It seems that her biggest challenge is going to be getting strong, healthy lungs. So far, her progress on the ventilator has been somewhat like the roller coaster we were warned to anticipate. While her settings have not ever been very high, the respiratory therapist has to adjust them repeatedly throughout the day. Yet another reason Andrea needs to grow. As her lungs get bigger and stronger, she should be able to get by without the ventilator.
Many people have commented that Andrea doesn't look that small. This picture was taken today, and that's my hand in the isolette for scale. Granted, I'm not petite, but my hands aren't THAT big!

Please continue praying. She is truly our miracle baby, and you all share in the credit for helping her thrive.

"Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself... 'How did I get through all of that?”

Saturday, March 21, 2009

Another First

I was able to catch Andrea with her eyes open today. We like to believe she is looking at us. In reality, she's probably still trying to work out where she is, when she should have been swimming away for another 10+ weeks.

Ken and I went to see Andrea this afternoon. Since the boys are not cleared for NICU yet, we took turns waiting in the car with them while the other was up with Andrea. Got to love the DVD player in the minivan!

I lucked out and went up to see Andrea while her nurse was doing the 3 o'clock check. (Every three hours they take her temperature, and blood pressure, change her diaper, clean her mouth and assorted other hygiene tasks.) As part of this check, the nurse was replacing Andrea's bedding. I've never seen that before, and it amazes me how everything is down to a science. The nurse wheeled a tray over with a new set of blankets for Andrea. We call her sleeping arrangement a "nest", because the blankets are rolled inside each other, with Andrea nestled in the center. The nurse set up a new "nest", ready to move Andrea into it. Much to my delight, Andrea had to be removed from the old nest in order to be put in the new one. I was able to hold her during this switch! The nurse picked her up from the isolette, then gently laid her in my two hands. This was the first time I've ever done more than let her hold my finger or gently touch her head. I was able to cradle Andrea for the time it took the nurse to remove the old bed and replace it with the new. It probably lasted 30 seconds, but it was the best part of my day.

In other news, during rounds this morning, it was decided to remove Andrea's IV. As of a few days ago, she was getting only .5 ml pf fluids per hour via IV, and that was only to keep the line open. The doctors felt she didn't need the line anymore, and that it could be put back if the situation changes. I have to say, she looks more comfortable without the line in her arm. Even though the needles and tubes are made for preemies, she looked dwarfed by the IV port in her forearm.

I continue to heal each day, thanks in part to the visiting nurse who comes twice daily to deal with my wound. Just to keep life interesting, Kenny G is still good and sick, but we hope he'll be on the mend soon. The other two men are holding their own. We believe we're all somewhat worn down from the stress, and it just manifests itself differently in each of us. However, every day we get through puts us closer to the happy ending we're praying for.

We have recently received another unexpected outpouring of support to our family, and I need to thank the Collins School community for it. We have been offered type O blood for Andrea, transportation for me until I can drive again, and play dates for Kenny, to keep him busy and provide coverage on the days I can't get back from the hospital before the bus. We are fairly new to the area, and can't believe the generous of outpouring of assistance. Thank you to all from Collins. It helps more than I can express to have Kenny taken care of.

"Reflect upon your blessings, of which every man has plenty, not on your past misfortunes, of which all men have some." Charles Dickens
(apologies for the lack of inclusive language - I don't paraphrase the quotes)

Friday, March 20, 2009

A Womb with a View

I've been mulling over the way Andrea lives right now. In some ways, it's hard to think of her as "our" baby, because we really have very little to do with her care right now. We can't pick her up or care for her. We can't even touch her, without first clearing it with the nurses to make sure that we won't interrupt any treatments or procedures. The easiest way for me to come to terms with that is by rearranging my thinking. I have decided that what Andrea is doing right now is gestating. She has exchanged the inhospitable environment she was in for "a womb with a view". She's in the isolette, essentially completing the remaining period of development that should have taken place inside. If I think about it that way, I can cope more easily. After all, we would not be holding her, touching her, feeding or changing her for another 11 weeks, if all had gone according to plan. Those tasks are being done more ably by the NICU staff than they were by Andrea's placenta. We're fortunate that they are able to take such good care of her.

Just to make life MORE interesting, Kenny George was sick today, with a fever of 101.5. Not wanting to introduce any germs to NICU, I opted to skip visiting today. Ken went instead, since he stayed home from work to help with Kenny. So today's report is from Dad's point of view.

We are thrilled to report another typical Andrea day. Ken reported that she was much improved after getting her transfusion yesterday. (From one of our donors! YEA!) She was very alert while Ken was visiting, with her eyes open and moving around as much as she is able. Her ventilator settings continue to be low, although there is no plan to remove the respirator any time soon. There are so many factors that go into the decision to take the tube out, but one of the biggest they're waiting for right now is an increase in her size and weight. Her lungs are so small, and only Andrea getting bigger will lead to bigger lungs. So the doctors continue to give her fortified "hind" milk and try to limit how many calories she burns. Occasionally, the nurses have to gently restrain Andrea by tying her legs to the isolette. She is given some slack so she can kick and move, but the gauze they use prevents her from being able to go wild and wear herself out. While the doctors and nurses don't like lethargic babies, because Andrea is so "feisty", they have the opposite concern. She burns too much energy just wiggling around in the isolette.

As always, we ask for continued prayers and positive thoughts. We remain amazed at how well Andrea is progressing. We truly believe in the power of the prayers you are all saying daily for Andrea, and hope they will continue to help her thrive.

"Hard things are put in our way, not to stop us, but to call out our courage and strength."

Thursday, March 19, 2009

Three Weeks Today!

I had a better title for today's post, but we need to celebrate the fact that Andrea is three weeks old today, as of 5:29 p.m. I'll use my clever idea tomorrow :-)

Andrea continues to follow a relatively uneventful course for an early preemie. However, two things happened today that drove home the point that we are not out of the woods yet, and will remain in limbo for many more weeks. When we got to NICU today, we noticed that the crib across from Andrea, most recently filled with a critically ill, but full term baby, was empty and all his personal belongings were gone. Our first thought was that this little guy lost his battle with his illness. Much to our relief, we learned that he had been moved to another area in NICU, but it served as a reminder that all these children are fragile, and things can change in a heartbeat. The other event was to see Andrea getting yet another blood transfusion. Her nurse reported that this morning, Andrea's color was poor, she was getting more oxygen than previously, and was not as active. A test of her blood revealed that her counts were low, and a transfusion was ordered. Fortunately, she responds well to the transfusions, and was much better when we saw her.

While I am on the subject of the transfusions, we learned today that Andrea will continue to need transfusions for most of the time she's in NICU. We didn't really have a good idea of how soon her bone marrow would grow to allow her body to manufacture its own blood. Our nurse told us that she'll need to be pretty close to full term (11 more weeks) before her marrow will be fully functional. So, if you are blood type O (positive or negative, doesn't matter) and would consider making a directed donation, please do so. Shoot me an email, or leave a comment, and I'll get you the phone number. We had one match so far, and the nurses are currently using that blood. We have a few weeks before they'll need a new pint, but the testing process takes time.

In other news, Andrea now weighs 630 grams, or a whopping 1 pound, 6.2 ounces. It's hard to see in the picture, but she is starting to fill out a little. Her fingers are less skeletal, and her chin is more rounded. Her cheeks have a little flesh on them, and her bones don't show through her skin. The primary goal right now is to help her grow as quickly as possible, so the new weight is a great sign. We were told that she could start wearing clothes at 1250 grams, but the nurse said they'll probably hold off longer than that. For the time being, they prefer to keep Andrea in the isolette, where they can maintain the environment close to body temperature. I didn't realize that maintaining body temperature burns calories, and the doctors DO NOT want Andrea to burn any more calories than she has to. By keeping her in a warm place, she has less work to do to stay warm.

We also learned that her small size is one reason she's still on the ventilator. Her respirator settings are low, and she's doing well, but the doctors and nurses would like her lungs to be bigger before they remove the tube. That is completely fine with us. We are in no hurry to have her disconnected. Still, many times Andrea breathes on her own. The respirator is more of an insurance policy.

As of this morning, Andrea is getting 10 ml (2 TEASPOONS) of milk per feeding. We thought they were going to hold her at 9.5, but she was able to tolerate the 10. This is the maximum for now, but it's still a good feeling to have her eating as much as she can. The milk is still fortified, is still the "hind" milk, and she still gets calcium and phosphorous through her feeding tube. All of which will help her grow as fast as possible.

Please continue to pray. We can't believe the milestone we're celebrating today. In some ways, it seems the time has flown - in others, each day has been a million years. Every day is a victory.
“Trust in the Lord with all your heart; and don't lean on your own understanding. In all things acknowledge him, and he shall direct your way. [Proverbs 3:5, 6]”

Wednesday, March 18, 2009

By Popular Demand

Well, general consensus from the people who weighed in is that I post even if the news is mostly the same as the day before. So, here we are with the daily update.

First, some have asked about me. We have a visiting nurse coming twice a day to do the wound care. In the good-news-I-guess department, my wound is considered an "acute" wound, (as opposed to "a cute" wound) and therefore in need of professional care for the time being, at least. Mom is certainly more than capable to do the work, but if the insurance will pay for a nurse, we might as well benefit. According to Mom and the nurse, the wound looks good, and is healing nicely. I try to avoid looking at the whole thing. I have to follow up with my doctor every week until I'm healed. At each appointment, the doctor will reevaluate the need for home care. (I tried to give details without being graphic.... the whole thing is still really icky!) Other than being a bit sore and having to move slowly, I seem to be on the mend.

Life continues to be stable in Andrea's world. She gained almost 2 ounces over the past day, although some of that gain will be lost in the diaper, if you get my meaning. She is up to 9.5 ml of milk per feeding, and the decision was made to keep her there for the time being. The maximum would be only 10, so she did pretty well for such a small baby!

Right now, the biggest concern of Andrea's doctors and nurses is her small size. When she was born at 26 weeks, she was the size of a 23 week old. Now, a day shy of three weeks after her birth, the doctors would like her to gain weight as fast as possible. To that end, they have already been fortifying her milk with extra calories. Starting today, I've been bringing them what is called hind milk. Since most of you probably don't want details of how I get it, all I'll say is that this milk is higher in calories than fore milk or the milk she was given before. (Google "hind milk" if you really want to know all about it.) Andrea is limited to the 9.5 ml feeding because her stomach is so small... using higher fat milk and adding additional calories to that milk is the best way to get her to gain weight.

One interesting thing we learned today was Andrea's APGAR score. For those of you without children in your lives, all newborn babies are assessed right after birth, at one minute and 5 minutes. Five factors - activity and muscle tone, pulse, grimace response, appearance, and respiration - are used to evaluate the baby's condition and each factor is scored on a scale of 0 to 2, with 2 being the best score. A baby who scores a 7 or above on the test at 1 minute after birth is generally considered in good health. We were thrilled to learn that Andrea scored a 7 at one minute and an 8 at five minutes! She continues to be a healthy baby who had a bad placenta. Her progress bears that out.

We have had a tremendous outpouring of love and support. I have been avoiding using the names of anyone here, except Ken, but I have to give a "shout out" to some people. Ken works for a school called Celebrate the Children, and I teach in Demarest. The people in these two places have gone above and beyond in reaching out to us. We have been the grateful beneficiaries of blood for the baby, meals ready to heat and eat, restaurant gift cards, baby gifts, rides to the hospital, child care and more. Our families have been keeping our household running, doing laundry, shuttling children around, getting me to New Brunswick to see Andrea and so on. Ken is doing as much of the above has he can, while holding down his job, taking care of his son, and filling the void of Mom for Kenny G. We would NEVER be able to manage without all the help we've gotten from everyone. We will NEVER be able to repay the generosity. But you all know who you are...and we thank you for everything. And I am writing thank you notes... they just take time.

Keep praying for Andrea and our family. Andrea continues to progress, and we're trying to hold on as well. We need all the prayers we can get.

"Great works are performed not by strength, but by perseverance.” Samuel Johnson

Tuesday, March 17, 2009

Smallest, but not most critical

We went to see Andrea this morning, and were thrilled to learn that, despite her small size, she is not considered the most critical baby in NICU. The doctors were doing rounds when we got there, and they start with the most acutely ill children first. Andrea is toward the bottom. It is kind of funny that she is still the smallest baby in NICU, despite her weight gain.

We spent a considerable amount of time talking to her nurse, who filled us in on the kinds of discussions the doctors and nurses have about Andrea now. Everything in medicine is a judgement call...as Andrea progresses, the staff needs to decide if today is the day to remove the ventilator (no) or the IV (again, no). The IV is on what they call "leave open" status. That means that enough fluid is given every hour to keep a clot from forming at the end of the catheter, but Andrea is not getting nutrients or medications via IV right now. She is getting 8.5 ml of milk (until tonight, when it'll go to 9 ml) every 3 hours in a feeding tube. The milk is being fortified with extra calories and minerals to help Andrea gain weight. Through the same tube, she is also being given calcium and phosphorous, which will help with her bone development.

Since Andrea's progress has been so steady, I am considering not posting every day. Ken & I cling to the daily report of nothing bad has happened, but I'm not sure everyone else feels the same urgency to be constantly updated. If you have an opinion, let me know. I am happy to report the minutia of each visit, but would like to avoid becoming repetitious or redundant.

As always, THANK YOU for ongoing prayers. We continue to have faith that God is watching out for her, and we have hope that all will be well, but Andrea will thrive because she is loved.

And now abide faith, hope, and love, these three, but the greatest of these is love.
1 Corinthians 13:13

Monday, March 16, 2009

We are so lucky!

Well, the best thing about this post is that I'm writing from the comfort of my bedroom in Livingston! I was discharged from the hospital early this afternoon. It's wonderful to be home, but I'm going to be seriously restricted for some time. If I recover well, I should be able to start driving some time next week. On the flip side, no lifting, pushing, moving, etc. for several more weeks. Mom will have to pack the extremely icky wound for a while, and starting next week, Ken will have to learn how to pack it as well. I personally think that goes above and beyond love, but he insists he can stand to do it. I am fortunate in my family.

We saw Andrea before leaving the hospital, and she is doing well. She was on her tummy, which helps with muscle development. She actually seemed pretty happy on her belly, although she was asleep, so there was none of the frustration you see in full term babies during tummy time. Andrea's nurse explained that tummy time is safe because Andrea is on a ventilator, and being monitored constantly, so there's not the risk you'd expect with full term babies sleeping on their bellies.

During rounds today, the doctors and nurses discussed removing the ventilator. Ultimately, it was decided that it's better to leave it in place right now, to spare Andrea the trauma of reinserting it if necessary. Her ventilator pressure is very low, so there are fewer risks of complications than there would be if she was under more pressure.

Interestingly enough, Andrea has not gained any length in the past week. While she looks longer to us, she's still at 12 inches. Today, we could absolutely see the weight gain in her that was noted in yesterday's post. Her ribs are covered, and her spine is not protruding from her skin. Her skin still hangs loose on her arms and legs, but she has no fat yet, and very little muscle. It will fill out in time.

One of the hardest parts of visiting the NICU is seeing other families and their babies. Today, I met a woman who delivered a full term boy who is in NICU because of intestinal problems. We also met a family who had preemie twins, one of whom did not survive. The other twin is not having as smooth a course as Andrea. A third baby is not expected to survive. Meeting these families and seeing their children makes us even more grateful for the course Andrea has been on for the past several days. All we can do is continue to pray and remain strong and hopeful. Thank you for all the prayers, support, and good wishes. We would be lost without the strength of our family and friends.

"Go within every day and find the inner strength so that the world will not blow your candle out."
Katherine Dunham

Sunday, March 15, 2009

An Eventful Day

I'm STILL in the hospital, getting IV antibiotics and having icky things done to my wound. However, I saw one of my "original" doctors today (who helped deliver Kenny G - that's how long I've known him) and he cleared me to go up to NICU. I've had enough antibiotics that I'm no longer infectious.

So, I can personally report the Andrea update today. She has gained more weight, now tipping the scales at 570 grams, or 1 pound, 4 ounces. She'll get measured later tonight, so we'll know how much longer she is. We were happy to see that Andrea is growing some muscle - most noticeably in her upper arms and lower legs. Her rib cage is less bony, too, so the weight is showing. We learned that her milk is being fortified with calories - basically, they've just made it more fattening. Andrea is getting 7 ml of milk in her feedings now. The increase will continue every 12 hours until she is getting 9 ml per feeding. After that, they'll slow the rate of increase.

The most exciting thing about the visit today was that I got a chance to be hands on with Andrea. Mom and I got there just as her nurse was about to do her routine checks and care. I was able to take Andrea's temperature, which was not popular with Andrea. She can't cry because of the breathing tube, but you could tell from her face that she was crying silently. It was funny and heartbreaking at the same time! I was also able to change her diaper - a big challenge on a little baby. Trying to keep all the wires out of the way while holding on to such tiny legs was not easy. And you've never seen such tiny diapers! Still, it was a huge treat to feel like Mom and care for my baby, instead of relying on the nurses for everything.

Since Andrea got blood yesterday, she is much more her normal self today. She was asleep when we got up to NICU, but was wiggling her toes and waving her arms in her sleep. I love watching her hands, which have unusually long fingers, and are pretty big in general for such a small baby. Just to keep the news current, Andrea's ventilator settings continue to be on the low end, her blood counts are normal, and her sugar is fine.

Many people have commented on how positive Andrea's recovery has been so far. I realized that many of you reading this blog might not know the whole story of Andrea, and why we believe she's doing so well.

When we had the 20 week ultrasound, there were some issues with Andrea's development that concerned the doctors. She was abnormally small for her gestational age, and her arms and legs were even smaller than her head and torso. As a result, we opted for an amniocentesis to rule out genetic abnormalities. We had a wonderful geneticist, who met with us and gave us good advice about the testing. We opted for an inclusive set of tests, including one that looked at individual genes on Andrea's chromosomes. Ultimately, I developed complications from the amnio that set this chain of events in motion. However, the GOOD news is that when the results came back, there is nothing genetically wrong with Andrea. She is a completely healthy baby. She was born early because there were dramatic problems with her placenta. Even though the NICU doctors can't mimic a placenta 100%, Andrea's placenta was functioning so badly that NICU is an improvement. We believe that Andrea is doing so well because she is a healthy baby.

As always, please continue to pray for Andrea. There is a whiteboard near her isolette that says "Baby Steps Forward". That's what we are doing: taking baby steps forward toward her coming home to us. Every prayer helps.

If you can believe, all things are possible to him who believeth. Mark 9:23

Saturday, March 14, 2009

More of the same...

Well, I'm still in the hospital, and nothing much has changed. Ken just got back from seeing Andrea, and she is continuing to do well. She is now up to 6 ml of milk per feeding. We just found out that one of our favorite nurses has been assigned to Andrea full time. That means that any time she is working, this one nurse will be Andrea's caregiver on the day shift. Two nurses are splitting the night shift. One reason we like this nurse so much is that she's really attuned to Andrea. I called earlier, and the nurse told me that she noticed that Andrea was not her usual "feisty" self. When they tested her blood, they noticed that she needed another transfusion. We were impressed that Andrea already has such a distinctive personality at the ripe old age of 16 days. So, in Andrea's world, all continues to progress normally, for which we are eternally grateful.

As for me, right now I have no idea what the plan is, moving forward. One doctor wants to operate as soon as the infection is gone. Another wants to continue to pack the wound and let it heal on its own. I continue to be on IV antibiotics and have the dressings changed twice a day. This qualifies as the most unpleasant experience of my life. But, as before, as long as Andrea is OK, I can endure.

“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"

Friday, March 13, 2009

More Good News/Bad News

The main purpose of this blog is to keep everyone up-to-date on Andrea. However, enough of our family and friends read this that it's the best way to notify everyone of how I'm progressing as well.

So, let's start with Andrea. We are thrilled to announce yet another positive day for our baby girl. She is getting 5 ml of milk every three hours starting tonight. Every 12 hours the nurses continue to increase her feedings by .5 ml, and the new amounts are consistently tolerated. Her ventilator settings are still low end, and her most recent blood gases are normal. So, in the preemie world, she is thriving. We can hardly wait until Sunday, when we'll find out how much more she's grown. We believe the doctors are pushing food to help her catch up a little in size.

Now, the down side. I am back in the hospital. If you saw the post from Wednesday (3/11) you know that I've been having some recovery issues, and I had this nasty abscess that ruptured. Mom and I saw the doctor for a follow up today, and things are not healing as they need to. Somehow, a layer of muscle in my abdomen has torn, and I'll need surgery to repair it. The doctors can't repair it until there's no more infection, so I'm back at RWJUH on IV antibiotics. I'm going to be here at least 4 days - possibly longer, depending on how long it takes to clear up the infection. Once it's gone, the surgeons can repair the damage, and I can go home.

I am trying to see the positive in all this. We are unable to express how truly grateful we are that Andrea is doing so well. We wouldn't trade that for anything, even my own recovery. However, after the week I've had, I'm really ready to start feeling better myself. Please keep praying for Andrea - and maybe throw in a good word for me. I need a little break.

"Great works are performed not by strength, but by perseverance” Samuel Johnson

Thursday, March 12, 2009

Officially Two Weeks Old!

We are pleased to report that as of 5:29 p.m. today, Andrea celebrated her two week birthday. This is another milestone we are relieved to have reached. We saw her earlier today, and she now weighs 530 grams, or 1 pound, 2.5 ounces. She gets weighed every day, but only measured on Sundays, so we don't know how much she's grown since last week. Still, weight gain is awesome, and we'll take every gram we can get.

In great news, we finally have a blood match for Andrea. We have had several people make "directed donations", but so far, only one has been compatible enough to be "marked" for her. With luck, others in the system will also match. However, since Andrea is continuing to grow and develop, she might not need another pint after this one.

Countless numbers of our family and friends continue to express interest in donating blood to Andrea. We cannot tell you how much that offer means to us. I am embarrassed to admit that I never thought much about donating blood, always assuming that enough "other" people were doing it that I could skip it. We would like to implore everyone reading this blog to consider going to your local blood bank and making a donation. A completely random donor saved Andrea's life. The first pint of blood they used for her (so far 5 transfusions, I think) was one that just happened to be in the blood bank. Some selfless, caring person gave a gift. While our baby might no longer need your blood, the sad truth is that there is always another baby, or a cancer patient, or a cardiac patient, or people with countless other medical conditions who are relying on us to provide them with the blood they need. We plan to make blood donations part of our new world order. (I need to be 6 weeks post op before I can donate, and Ken donated the day after Andrea was born). If you were moved to donate for us and for our baby, we hope you'll be moved to donate for others. We have a new appreciation for how important that gift really is.

In other news, Mom happened to be in NICU while doctors were doing rounds today, so we got some "inside" information on Andrea's progress. Since Mom is a nurse, she actually UNDERSTANDS what the doctors and nurses were discussing. The best way to sum it up is that everything is progressing as it should. On an ongoing basis, the nurses make adjustments to Andrea's ventilator settings. No one is alarmed by that, and her settings remain at the low end. That means that she is getting minimal breathing support, and does breathe on her own as well. She is continuing to tolerate and digest ever-increasing amounts of milk. As of tonight, she'll be getting 4 ml every three hours. We also learned today that the milk is being fortified with extra nutrients. There are limited to what, and how much, can be added to her IV or passed into her blood. By fortifying the milk she gets, the doctors are able to increase her nutrition. All other things were good. There were no concerns about her blood counts, her kidneys are working properly, and she continues to be active. There is nothing better for me to watch than her arms and legs waving away. She grasps things, including her tubes, and has even done "thumbs up", which made me laugh.

As always, please continue to pray and send Andrea positive energy. While it's true that she is doing well, she is by no means out of the woods. You've all brought her so far. Let's keep her heading in the right direction!

“This day and your life ... are God's gift to you , so give thanks and be joyful always!” Jim Beggs

Wednesday, March 11, 2009

Maintaining Balance in the Universe

I have a theory - the universe needs to maintain a balance of cr*p in order to continue to exist. The last two days have proved my theory. On the good news side (or to be positive) Andrea continues to progress. Her feedings have been increased to 3 ml every three hours. Mom saw her today, and she is obviously gaining weight. According to the nurse, another 30 grams, which is more than an ounce. Her ventilator settings have been increased slightly, but no one in NICU seems to be worried about the new settings.

On the bad news side (or to be negative) I have hit a rough road in my recovery. Yesterday, I spiked a fever of 102.2 F. I was told to head right to the emergency room, so Mom and I spent our evening there, getting home at 3 a.m. this morning. I was given an antibiotic and not much information. That was bad enough, but it got worse today. While trying to get my sneakers on, I bent over and heard a "pop". When Mom came to investigate, she discovered that I had broken open my surgical site, and ruptured an abscess. So, Mom and I spent another 7 hours in the emergency room today, getting home about 10 p.m. I was given a CT scan, and endured some fairly awful procedures that I will not detail here. Suffice to say, I have an extremely icky wound that will remain extremely icky for weeks to come.

So, here is the explanation for my theory - in order for the universe to remain in balance, there needs to be a corresponding bit of difficulty or hardship for each good thing that transpires. We have been, and continue to be, extremely blessed by Andrea's progress as she tries to continue her gestation in NICU. Since the universe will not allow such ongoing happiness without a down side, I seem to have become the downside. I refuse to whine about the situation, but after a total of 12 hours in the ER over 2 days, I am indulging in a pity party for one brief moment.

I told the ER doctor tonight that, if I had a choice between Andrea doing well, and me having complications, or reversing the situation, I would gladly keep things as they are. I am happy to have our baby girl continue to progress normally. However, I am REALLY ready for a break for myself. As many of you know, this has been one challenge after another since I learned I was pregnant!

As always, please continue to pray for Andrea. She is doing well, and I will gladly take the universe's cr*p in exchange.

"If God sends us on strong paths, we are provided strong shoes." Corrie TenBoom

Tuesday, March 10, 2009

Amazingly Good News!

Mom & I went to see Andrea this afternoon. In the preemie world, it can only be described as a stellar visit. We recently noticed that Andrea seemed to be filling out a bit, with flesh growing over her ribs most obviously, but all of a sudden, she was skeletally thin again. We decided to ask her nurse if she'd grown. As of Sunday evening, she measured 12 inches, an increase of 1.5 inches from her birth size (in only 10 days!). I know it's hard to fathom a baby that's only a foot long, but we are ecstatic that she seems to be consistently gaining ground.

In other good news, the nurses have been able to increase the amount of milk Andrea gets at each feeding. Today she is getting 2 ml every three hours. Beginning tonight, she'll get 2.5 ml. If she is able to tolerate and digest that amount, they will increase her feeding by .5 ml every 12 hours. Most of her nutrition still comes from IV, but hearing that she's getting increased amounts of milk makes me feel so good. Right now, that's all I can do for Andrea, other than pray and have faith that she will come home to join our family.

Andrea was given an additional blood transfusion yesterday. As I mentioned, her blood counts were not bad, but her small size and young gestational age really work against her. Today's nurse said an older or bigger baby with the same counts would have been able to avoid the transfusions. However, we have 6 pints of blood currently being tested, and two more donors going tomorrow. So, even if "our" blood can't be used for Andrea, we are more than replacing what she's using. Thank you again to everyone who literally bled for our baby.

God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it. - unknown

Monday, March 9, 2009

Baby Steps Forward

We are pleased to report another good day. For the first time, the nurse actually told me that Andrea is doing "well". Usually, I hear "she's doing as expected", or "there's nothing to worry about today". To hear that things are actually GOOD is an amazing thing.

The only little wrinkle in today's visit is that Andrea might be getting another transfusion. She just had one 2 days ago. Her blood counts are "OK", but the doctors would like them to be higher. Since her marrow does not make blood yet, the only way to improve the counts is to add more blood. Andrea seems unfazed by the process, but it upsets us that she has to endure the transfusions.

There is talk of increasing the amount of milk Andrea gets in each feeding. Right now, most of her nutrition comes from the IV. However, the milk helps her immunity, and is high in fat, which she desperately needs. She has gained some weight, but is also growing longer, so she still looks very thin. In that area, she definitely takes after brother Kenny G.

For with God nothing shall be impossible. Luke 1:37

Sunday, March 8, 2009

First Picture on the Blog

Andrea has been on antibiotics since birth. There was a concern that she might have an infection, although infection and inflammation present in similar ways in preemies. Since the preemie mantra is "better safe than sorry", the doctors decided to treat Andrea for infection. As of today, she is off the antibiotics, and there are no signs of infection or inflammation.

All other things with Andrea are good. She had more milk this morning, and we're waiting to see how that was tolerated. Her sugar continues to be well controlled, and she is breathing on her own in addition to with the ventilator. She was asleep in her little "nest" today, made from a receiving blanket she got for Christmas. It makes me feel good to see her surrounded by things from the people who love her.

Ken finally found my digital camera, so today I was able to get pictures in digital format. I have pictures on my cell, and on 35mm, but finally I can upload! Unfortunately, there is no scale in the image, so you don't get a good grasp of how tiny she is, but we wanted all her fans to see her. She was snoozing through my whole visit, so no shots with opened eyes today.

To provide scale for Andrea's size, the pictures in the isolette are standard 2" x 3" wallet prints. She really is SMALL!

Please keep praying and sending positive energy Andrea's way. Her progress so far proves it's working.

"Nothing has more strength than dire necessity." Euripides

Saturday, March 7, 2009

Guardian Angels Abound

I'm just back from today's visit to Andrea. We currently have 6 pints of blood in the process of being screened for her, and I needed to write today in gratitude for these Angels. Blood has been donated not only by my brother-in-law, (who would have done it anyway, but if he hadn't, my sister would have nagged him forever) but by two coworkers, a friend of a coworker, and two friends of my sister. These people all drove a considerable distance to donate, and gave our Andrea something truly irreplaceable. The doctors and nurses can give her nutrition and fluids to mimic what my body should have provided. There is no substitute for the gift these people have given. How do we ever say "thank you"?

We are overjoyed to report another positive day. Andrea needed another transfusion, but there is blood available, so we are happy. She has been tolerating milk, although she couldn't have any before or after the transfusion, and going to the bathroom on her own, meaning her digestive system is working. She is still on the ventilator, but also continuing to breathe on her own. Her blood gases are good, as is her sugar. Most amazingly, she gained 27 grams since yesterday. (0.95 ounces)

I was able to "hold" Andrea briefly today, the first time in several days. Holding a preemie, especially one this small, is not like holding a full term baby. I was able to rest one hand over her legs and feet so she could feel me, and I got to hold her hand. She is able to grip, which is an amazing thing to see, given that her hands are so tiny. She can grip the tip of my index finger, and holds on pretty tightly. Days like today give me hope that we will hold her outside the isolette and eventually have our daughter home.

Be strong and take heart, all you who hope in the LORD.
Psalm 31:24

Friday, March 6, 2009

No news is good news in the preemie world.

I am happy to report a completely uneventful day in the life of Andrea. Ken saw her most recently, and all the nurse could report is that she's doing well. We have already learned to dread the bad news, so "nothing to report" is like a ray of sunshine. Andrea had gained 30 grams since birth, which is in itself amazing. All babies LOSE weight after delivery. We believe that she was in such distress while I was pregnant that she is truly better off in NICU than she was in me. We noticed today that she is growing flesh over her bones, most noticeably her rib cage. It's a relief to see her filling out a bit, although it's hard to imagine her as a robust, chunky baby. We have faith that we will see that day, but it's miles down the road.

I was able to leave pictures of the boys today - taped inside the isolette. The Tori & Ken story has made the rounds of NICU (we met on eHarmony over 4 years ago) and of course, the nurses have heard about our boys who are 6 weeks apart in age, and who share the same name. Although Andrea can't see the pictures (her eyes don't focus yet, although she opens them and makes faces) her big brothers are watching over her, and they serve to remind her caregivers that many people love her and can't wait for her to come home. And of course the nurses love seeing the faces of the boys they've heard so much about.

So don't be anxious about tomorrow. God will take care of your tomorrow too. Live one day at a time. Matthew 6.34

Thursday, March 5, 2009

One Week Today!

Today marks one week since Andrea was born. In many ways, the first week is the most crutial - there are problems that arise during the first week that don't appear later. So far, the valve in Andrea's heart remains closed (5 more weeks until we know it's closed permanently), her lungs are working fairly well, and she has not had any intercranial bleeding. The NICU staff will do another ultrasound of her brain to make sure that there has been no bleeding since the last scan. While it is still possible for any of the previous problems to reappear, it's much less likely moving forward.

Andrea is continuing to hold her own. The nurses have cut out milk temporarily because there have been some concerns about her ability to digest milk properly right now. When you consider that her stomach and intestines thought they had 13 more weeks before being pressed into service, it's not a surprise that we hit minor bumps in the road.

Wednesday, March 4, 2009

Ask and Ye Shall Receive

Everyone we know has been offering help. The first thing that Ken and I have learned as parents of a preemie, is that we don't even know what we need FOR help. The one clear cut piece was that Andrea needs blood. She had another transfusion today. We want to stress that these transfusions are NOT necessary because Andrea is losing blood or having similar problems. The only way the doctors and nurses can monitor her condition is to repeatedly take blood to evaluate her physical condition. Since Andrea is so premature, her bone marrow cannot replace the blood the nurses take for testing. So, the transfusions are absolutely necessary.

We put out a call to our families and friends, looking for O+ donors. We have been blown away by the immediate and selfless response to the call. Not only have our families and friends responded, but friends of our friends are making appointments and trying to donate. These people have no reason to help us, other than their concern for a helpless and innocent baby, and their love of us or our extended family. If that is not a clear sign of God among us, I don't know what is.

There are currently 8 donors in the process of donating and being screened. Each transfusion is about 7 ml of blood, so one pint will last a long time. The blood bank even commented to my sister about how many people are calling for our baby. If you have already donated, or have made your appointment, THANK YOU. We will never be able to repay the kindness. If you want to donate, we are asking you to wait a week or so, until we know how much blood we've "banked" for Andrea. Rest assured, we will put the call out again, if we need to.

Mom and I saw Andrea this morning, and are pleased to report it was another "good" night. Five of every six breaths are her own, not the respirator. She has been able to digest milk, and will now get some every 3 hours. To me, this was one of the biggest milestones, as she is now getting the antibodies from colostrum that will help her develop a strong and functioning immune system. Tomorrow marks one week since her birth, which is also an important milestone. We have been told that many of the current concerns (bleeding in the brain, heart problems, etc.) are much less likely after the first week. So, I guess we will shortly learn what challenges and obstacles await us in week two.

Please continue to keep Andrea in your prayers. She is our miracle baby, and you have all been instrumental in getting her to this point.

Tuesday, March 3, 2009

Andrea Update

It's hard to believe, but it was only a week ago today that I was admitted to the hospital for "observation", and what we thought was going to be a long period of bed rest. In some ways, it has been the longest seven days of our lives, and we continue to be amazed at how things have evolved.

Ken and I both had a chance to visit Andrea today, and are pleased to report that she had another "good" day. (Remember, we are talking about "good" in the world of preemie babies!) Andrea is now on the lowest level of breathing support, and can be seen breathing on her own through her nose. Today's nurse explained that the breathing tube will remain a bit longer, because sometimes Andrea apparently "forgets" to breathe. It's hard to fathom, but there it is.

A recent ultrasound of Andrea's brain revealed no intercranial bleeds so far. That is a big worry for the first week, mostly, so we are coming to the end of the biggest danger period for that.

Last night, an arterial line was inserted in her arm, allowing doctors to send fluids directly into her larger chest vessels, instead of the umbilical ones they've been using so far. The line went in the first time, to the relief of all.

We learned today that Andrea measured 10.5 inches at delivery. Kenny George was 20.5, so she's almost half his size! I can't believe that Kenny even seemed small to me. I have a new concept of small!

A big high point for us was we got to "hold" Andrea for a bit. She cannot leave the isolette, but we were able to cup her head and feet, sort of cushioning her as she would have been inside. Her skin is so fragile, we can't stroke her, but it is a joy to feel her warm and safe. She was not under the jaundice lights today, so we got to see most of her face. Despite her small size, she makes facial expressions, and by turns looked annoyed, bored, and sleepy. She yawns, which cracks me up. More than once, she opened her eyes. Her nervous system is immature, so she doesn't focus on things, but she looks more real when her eyes open. Otherwise, she could be a doll.

So, thank you all who continue to pray and support us. God is listening and watching over our baby and us. As before, we know a bump is coming eventually, but we continue to be encouraged by her progress.

Sunday, March 1, 2009

From the Beginning

Despite my years as a technology coordinator, I've never been much interested in blogging, even as it's become a big thing in the schools. However, Ken and I know how interested people are in what's happening to Andrea, and we can't keep up with the emails, texts and calls. I'm going to at least TRY to post updates - not sure how often, but as much as I can.

We've had a crash course in premature babies, and will learn tons more over the next few months. Some of this might be repeated information, but some of you are coming on new, so we'll start from the beginning.

Andrea Eda Lindsley (named after her two grandmothers) was born on Thursday, February 26, 2009, at a gestational age of 26 weeks. (Making her 14 weeks premature) She weighed in at slightly less than one pound. In the good news department, my AWESOME doctors at Robert Wood Johnson Hospital must have seen this coming, because I was admitted two days previously, and given steroid injections to help speed the development of Andrea's lungs. Working in Andrea's favor is the fact that she's a girl (preemie girls universally do better than boys) and that she was delivered in a controlled situation (as opposed to one where the doctors were working to save my life).

On the down side, at 26 weeks and less than one pound, Andrea has a lot of hurdles to overcome. She's doing as expected so far. She has a breathing tube inserted which is helping her respiration. Currently, she gets only minimal breathing support, but we're happy the doctors are being cautious. She has responded well to medication to close her heart valve, and recently started getting some milk. (1/5 of a teaspoon every 3 hours) She has had a few blood transfusions, which is not unexpected in preemies. We are asking family and friends who are type O to consider making a directed donation for her. If you are interested, email me, and I'll send you the information.

The NICU (Neonatal Intensive Care Unit) doctors have cautioned us that the 3 months ahead are going to be a roller coaster. We have been told to not get too excited by the high points, and not get too dejected by the setbacks. Andrea just had two good days in a row... so we're trying to steel ourselves for a bump in the road. All Andrea's caregivers have reported the same thing, and in pretty much the same words: She is a "feisty" baby. She tolerates the treatments she is given, but doesn't make life easy on the nurses. She kicks things out of the sterile field, and is just generally a bundle of personality. The people taking care of her are all amazing. The care and dedication we see every time we go to NICU are impossible to describe.

In the days and weeks ahead, I'll post news as we have it and may share some pictures down the road. Right now, Andrea is very much connected to tubes and wires. She's so small, we can't see much of her. Most of her little face is blocked by the breathing tube, and she spends most of each day under a light for jaundice. When the light is on, her eyes are shielded by a mask, making her look like a bathing beauty!

We ask for prayers for Andrea, that she continues to do well and grow strong. We look forward to bringing our daughter home to join her big brothers, and cannot wait to introduce her to our wonderfully supportive family and friends.

Once you choose hope, anything's possible. Christopher Reeve