Matchy-Matchy

I think Andrea's nurses have a good time dressing her. Having a son already, I can attest to the fact that it's more fun picking out girls' clothes than boys'. Andrea has six or 7 outfits, most with matching hats and socks, and many that coordinate with her blankets. Today's nurse made sure that Andrea was completely tricked out in matching shirt/pants/hat/socks/blankets, right down to the one covering the crib mattress! You can see in the picture that Andrea is happy enough with her "look" to give us a small smile.

All is the same today as yesterday. Andrea lost 30 grams, most probably due to the Lasix, which is a diuretic. I think tomorrow is the last day for that. Her breathing seemed somewhat better today - she is still on 1 liter of 28% oxygen, but didn't need additional support while eating, even during nursing.

Hopefully the new rotation of doctors will have some news to share tomorrow. Also, our favorite nurse is back, which is always the best way to get information. She makes sure we know exactly what's going on.

"The grand essentials to happiness in this life are something to do, something to love and something to hope for."
Joseph Addison

Just a Picture

Andrea is 4 pounds, 12.6 ounces today - I didn't get a gram weight. She is on the same amount of oxygen, and fortunately, nothing has changed since yesterday. I know many of you worry if there's no post, so all you get tonight is this cute picture. There really is nothing else to report. We hope things continue to be uneventful. Once the new rotation starts on Monday, there will be more to say.

“We must accept finite disappointment, but we must never lose infinite hope.”
Martin Luther King

Maintaining the Status Quo

Well, it's day 92 of life for Andrea, which is a sobering thought. It means that she's been here for a full 1/4 of a year. When I think about the situation that way, I'm amazed that we all continue to function here. It's hard enough going to the hospital every day and working toward and praying for Andrea's recovery. While this has been going on in our lives, the rest of the world has continued to revolve. We've tried hard to keep life as normal as possible for our boys, nieces and nephews and family and friends, but it's been a challenge. The days are full, and events sneak up on us. After I finish this post, I'm off to frost a Sponge Bob birthday cake for one of the boys! I know life will be hard when Andrea's home, but it'll be hard in a different way from the way it is now.

Andrea now weighs 2145 grams (4 pounds, 11.7 ounces). She is still stuck at about 28% oxygen, but the flow has been reduced to 1 liter per minute. The doctors are puzzled about why she can't seem to get off that last bit of oxygen, and so are doing a few tests to see if they can come to some conclusions. She's going to have another echo cardiogram, to make sure that her heart is functioning properly in the circulation of her oxygenated blood. Andrea's also going to have another course of Lasix, a diuretic, to see if that improves the effectiveness of her lungs. She remains on the high calorie milk, because the doctors don't want to increase the volume of food she's being given. There is nothing else that's different in her daily routine. She eats, sleeps, gets PT, has a bath and waits to grow.

I had a long talk with one of the respiratory therapists today, about the process of bringing Andrea home on oxygen. The possibility of that has only recently been discussed, but I like to have all the facts. If we are able to take Andrea home, I would spend 24 hours in the hospital ahead of time, in what is called the "Transition Room". I would be responsible for Andrea's care, using the same equipment we'd have at home. At the same time, she would be monitored by the nurses, to make sure that all is well. It certainly sounds doable. One reason we'd like to get her home is that she needs more socialization than she can get in the SCN. The nurses are awesome, but they have other babies to care for. Once she's here, we can interact with her more consistently, which will help her development in so many ways.

The rotation of doctors changes again on Monday, so nothing will happen right this minute. Discharges are not usually done over the weekend, and new doctors coming on rotation are unlikely to make hasty decisions about treating a baby they've just met. (Although most of these doctors have covered before, and pretty much everyone knows Andrea!)

We ask for continued prayers that Andrea grows stronger and healthier. She has come so far, and just needs a boost to get over this last hurdle.

"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain."

Author Unknown

Thirteen Weeks Today!

As of 5:29 p.m., we are wishing Andrea a very happy 13 week birthday! It is truly a miracle, especially considering that she wasn't even due until next week.

A lot has happened in the 24 hours since I last posted. Andrea had her vaccines yesterday afternoon (Hepatitis, DPT, Pneumonia, Meningitis and Polio) given in three shots. Other than a mild fever (99 degrees) that lasted for only a short time, she seems to have had no ill effects. I think the ordeal wore her out, though. She spent much of today sleeping.

Also yesterday, Andrea had her hearing checked, which is standard practice before these babies go home. I was curious as to how they could check hearing in such a tiny baby - I'm sure you all remember the hearing tests we had in school. "Raise your hand if you hear the sound". The doctor put a little speaker in Andrea's ear and attached sensors to her forehead and behind her ears. The sensors measured brain wave activity when sounds were played. Andrea passed with flying colors, so we know her hearing is OK. So when she ignores us as she gets older, we know it'll be attitude, not a hearing problem.

Every night, the babies in NICU and SCN are given baths. Until yesterday, Andrea had a sponge bath. For the first time, she was given a tub bath last evening. We weren't there, unfortunately, but the nurse said she was crying until she hit the water, and then she didn't know what to make of the whole situation. The basin they use for her is about half the size of a standard kitchen dishpan!

Ken is currently at the hospital for a visit, and he will be able to bathe Andrea tonight. I left the camera for him, so hopefully I'll be able to post a bath picture when he gets home. In other news, Andrea's weight is unchanged from yesterday, and the doctors decided to go back up to the 27 calorie milk, which has both human milk fortifier and powdered baby formula added. The concern is that she is now 39 weeks gestation and still requires oxygen support. By giving her the extra calories, the doctors are hoping she'll grow faster and be able to get off the oxygen.

The doctors are considering sending Andrea home ON oxygen, since she is getting NO other support from them. She is completely bottle/breast fed and she can maintain her body temperature. She is on no medications other than vitamins and minerals. If she was off oxygen, she'd be a completely normal newborn. Of course, we will take Andrea home whenever the doctors are ready to discharge her, but it's scary to think of her being home and connected to an oxygen tank.

Andrea's primary day nurse, who spends much of her time advocating for what is best for Andrea, keeps reminding the doctors that Andrea is actually -1 week old right now. She is still a week from her due date. I think she's convinced the doctors to wait until she's actually "0", meaning at her due date, before they make a decision about the oxygen at home. So, for all of you praying for Andrea, please say a few extra prayers for her, that she grows well this week, and her lungs develop the size and strength they need to function properly.

"He conquers who endures."

Persius

Big News!

Andrea had yet another follow up eye exam today. The great news is that it appears that her eyes are developing normally, and that the areas of concern were due to her extreme prematurity. We have to see the doctor again in two weeks, either in the SCN, or IN THE OFFICE, if we've been discharged!

The other big news is that Andrea is getting her first round of vaccines today. Full term babies get them at two months. Andrea was three months old yesterday, but gestationally, shouldn't even be born yet. We had to wait for her to be over 2 kilograms before the vaccines could be given. We're actually happy that she's getting these vaccines in the hospital. It's not unusual for babies to run a slight fever after vaccinations. Andrea will be much more closely monitored in the hospital than she would be at home, and so any problems will be discovered more easily.

Andrea has been gaining weight so consistently that the doctors have changed the fortification of her formula. She is still getting breast milk, but now it just has "human milk fortifier" added. They're no longer adding powdered formula. It seems like a little thing - her old milk was 27 calories; the new one is 24. The goal is to keep her gaining weight at a healthy rate. She seems to be doing well with nursing, but doesn't have the stamina to get all her nutrition that way. She can manage about 10 to 15 minutes and then starts to fall asleep. She is allowed to have her entire feeding of 50 ml after nursing, and she has yet to leave anything behind.

Andrea's weight is up to 2090 grams (4 pounds, 9.7 ounces), having gained back the weight she lost yesterday, plus a bit more. It's hard to believe we're almost at 5 pounds. Another 160 grams and she will have quintupled her birth weight. Not bad for about 13 weeks of life! We are so proud of how hard Andrea has been working. We can see her getting stronger every day, and she fights the nurses and therapists on everything. From the beginning, we were told that was a good sign, and it has borne out. She is progressing more every day.

“At the timberline where the storms strike with the most fury, the sturdiest trees are found.” Hudson Newsletter

Life in SCN

Today was the first time I spent any appreciable time in the SCN with Andrea, and it really is a different place from the NICU. Even though most of the babies are on monitors of some kind, there are many fewer alarms going off. To be fair, even the NICU at Robert Wood Johnson is pretty quiet. I've heard from friends who've had similar experiences that sometimes the NICUs are very bright, chaotic places. That was not our experience at RWJ. However, the ventilators and CPAP have very distinctive alarms, and we heard them often in NICU, even when Andrea was not on one of those machines. Babies cannot be in the Special Care Nursery if they're on a respirator or CPAP, so we don't hear those alarms. I have to say, I don't miss them!

A perk for me is that I have a bit more privacy now, when I nurse Andrea. There are curtains that enclose her whole "room". In the NICU, the lactation consultant moved several privacy screens for me, but I felt like I was nursing in a dressing room! With Kenny, I was pretty good at being discrete, but Andrea is still so small, I have more to keep track of in her positioning. It's a relief to have the space to "work", without worrying about exposing myself.

Someone I never mentioned before in any great detail is the lactation consultant, probably because we were so far from being able to nurse. The NICU/SCN has a full time person who is a NICU nurse with a speciality in lactation and breast feeding. She is the resource for medicine questions (i.e., can I still nurse while taking drug x?) and helps moms who want to breast feed make it work with these preemies. With her help, Andrea has done remarkably well. Since there's no way to know how much she eats at each nursing session, after I nurse Andrea, she is given her regular 50 ml of milk. So far, she still eats the entire bottle!

I see my doctor tomorrow for yet another follow up to my incredibly icky wound. Ken tells me that it's too small to be considered a wound anymore, and I should refer to it as a "cut", but that just doesn't work for me :-). Every time I see the doctor, I'm hoping it'll be the last visit, and every time, there's another one. I no longer believe it'll ever be over!

Thank you, as always, for all the love, support, good wishes, meals, cards, gifts, etc. Some day, I promise to personally acknowledge every person who played a part in Andrea's story. I just have no idea when that will be.

"Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will."

Jawaharal Nehru

Everything in Moderation

We returned a bit early from our weekend in Wildwood so Ken could see Andrea before the week's insanity hit. This was the first time we'd seen her in the SCN, and she looks so good! Unfortunately, I forgot to bring a camera, so no picture today.

Andrea's weight is up to 2085 grams (4 pounds, 9.5 ounces). She's been eating so much that the doctors are modifying "feed on demand". She still gets fed every four hours, but she's being limited to no more than 50 ml. Andrea was showing some signs of edema, so we're trying to slow her down a little.

Andrea is still on nasal cannula today. She had some breaks yesterday, but so far is not breathing well enough to be completely on her own.

The weekend was great, but I'm wiped out. My mom calls it beach fatigue. I'll try to write more tomorrow.

"The greater the difficulty the more glory in surmounting it. Skillful pilots gain their reputation from storms and tempests."
Epictetus

SCN

What a day! It seems like Andrea wants to impress us in these days that we're gone. Mom and Dad went to see her again today, and the first thing they discovered is that she's been moved out of the NICU and into the SCN, which stands for Special Care Nursery. Basically, the SCN is a step down unit where babies go in the brief time leading up to discharge.

In addition to being moved out of NICU, Andrea spent 2 hours completely off the nasal cannula - she was breathing completely on her own, with no oxygen support. Her nurse put the cannula back on before Mom fed her, just to make sure that Andrea had no desats while eating. The nurse is going to try the 4 p.m. feeding without oxygen and see what happens. Now that she's eating on demand, Andrea seems to be averaging between 60 ml (2 ounces) and 72 ml of milk at each feeding. That's pretty much what a full term baby would eat at the beginning, so she's right on track.

Andrea's weight is up to 1985 grams (4 pounds, 6 ounces). When she gets to 2000 grams (2 kilograms) she will get the vaccinations normally given to two month old babies. We expect that to be any day now.

The process for bringing Andrea home is slightly different from bringing home a full term baby. We have to bring our car seat to the SCN two days before discharge. We also have to fill any prescriptions and bring them in early as well. Andrea will need to be seen in the pediatrician's office no more than two days after she comes home. There will be a lot to coordinate, but it will be a pleasure to have her with us all the time. Even when she wakes us up in the middle of the night!

We can hardly wait to introduce Andrea to the wonderful people who brought us to this point. Please keep the prayers coming just a little bit longer!

“True friendship multiplies the good in life and divides its evils. Strive to have friends, for life without friends is like life on a desert island..to find one real friend in a lifetime is good fortune; to keep him is a blessing.”
Baltasar Gracian

New Digs

As you can see, if you're reading this, I have Internet access in the hotel. WooHoo! Since Mom and Dad went to see Andrea today, I can manage a post between what they related and what we got from the nurse over the phone. The only downer is that I don't have a picture from today, so I've posted one from yesterday. She's still too cute!

Andrea was moved again, back over to a sunnier location. She's next to a window again, which is a big improvement over the center pod where we were. It's a little frustrating to have her moved so often, because we don't always know where we'll find her when we get to the hospital, but they don't move the sick babies. If the nurses can move her, she's doing pretty well.

The biggest change since yesterday is that Andrea went from eating every three hours to "feed on demand". That equates to eating less often, but she's allowed to eat as much as she wants. Her first time out, she had 55 ml, which is almost twice the 32 ml she was allocated by the doctors. Her second on demand feeding, she ate 72 ml! What amazes us is that Andrea was gaining weight on the amounts of milk she was getting, and obviously she wasn't getting enough. It'll be interesting to see how her weight changes now that she can eat as much as she likes!

We just have to wait for the lungs to catch up, as I mentioned yesterday. Andrea's nurse told

mom that sometimes babies don't have gradual reduction in oxygen needs. It's possible that she'll go from 2 liters of flow and 23 - 25% oxygen (where she is now) to straight room air in one move. It's all just wait and see right now. However, we may have Andrea home sooner than we expected. We were originally told that most premature babies come home pretty close to their due date. (Andrea was due June 4) Then, because she was SO small, we were told to expect something closer to the end of June. Now, she's done so well that she might be home within the next few weeks. Once she's off oxygen, she has to have no desats for 48 hours, and then she's all ours!

Please keep praying for us. We are SO close to the end, and we never would have made it without the help and support.

"Great things are not done by impulse, but by a series of small things brought together."

Vincent Van Gogh

Bigger Lungs

Well, at the ripe old age of 12 weeks and 1 day, Andrea has reached almost all the milestones she needs to in order to go home. She is on full bottle feeds, and is able to try nursing when she feels up to it. She can maintain her body temperature completely unassisted, and she weights almost 4 1/4 pounds. (No weight gain since yesterday, but no big deal) The only thing she still needs to do is be able to breathe well with no oxygen support. She's getting so close, but we're not there yet. She is still on 2 liters of oxygen per minute, at 25%. 21% is room air, and she needs to be able to breathe well without the support of the tubes in her nose. She can manage for a little while, but she's not strong enough yet to manage completely alone. Still, when we began this odyssey 85 days ago, the mountain seemed insurmountable. To be so far along, and so much nearer the end is a wondrous feeling.

Andrea's outfit today was a gift from a coworker, and my favorite thing about it is the embroidery. In the upper chest it says "I am getting prettier every day". She really is blossoming into a beautiful baby. She has rolls of fat on her legs, and is developing a double chin! She has gained so much weight in the past week that the doctors ordered that the MCT (Medium chain triglycerides) be stopped. She was getting MCT oil in her feedings to increase the calorie content of the milk. The nurses will continue to fortify the milk with "human milk fortifier" and powdered baby formula.

Andrea's last dose of antibiotics was at 2 p.m. today. She got them via IV, and every day the IV had to be moved to a new location. When doctors leave an IV in anyone, a certain amount of fluid needs to pass through it to keep a blood clot from forming at the end. Andrea couldn't absorb more fluids since she is getting all her nutrition through her milk, so the IV needed to be removed every day and reinserted in a new place (arm or leg) the next time it was needed. It's a relief to us (and her, I'm sure) that the needles will stop until Monday labs, when they'll draw her blood for weekly testing.

Thank you for the extra prayers this past week, as we dealt with the scariness of last Friday. Andrea seems well on her way to recovery, and thankfully there was nothing more serious than a need for blood. If we're lucky, that will be Andrea's last transfusion. Hopefully, she'll be able to make it to the end without another. Fortunately we have blood on reserve, so it's there if we need it.

I'll try to post Saturday and Sunday, if there is Internet access in or near the hotel. Rest assured that Andrea is in good hands, and is benefiting from your continued good wishes and prayers. We are so fortunate in our friends.

"A friend is one who strengthens you with prayers, blesses you with love and encourages you with hope."
Romans 1:11, 12.

Gavone!

For the non-Italians reading this, a brief definition of "Gavone".

Italian word meaning someone who

1) Eats too much and is a pig

2) Or takes more than he can eat

i.e. Frankie is such a gavone, look how many canolis he took.

There is no better word to describe Andrea right now. Her weight is up to 1910 grams (4 pounds, 3.4 ounces) and she's devouring her 32 ml of milk. She is doing so well with the bottles that one doctor last night ordered all feeding to be bottles. The doctors today backed off that, not wanting to stress Andrea out too much just yet. Tomorrow is her last day of antibiotics, so by Saturday, she'll be all bottles.

With the help of the lactation consultant, Andrea and I tried nursing today. Since there is no way to tell how much milk she gets from nursing, we decided that we'd also offer her the regular bottle of 32 ml of milk. Andrea managed to nurse for 10 minutes, then scarfed down the entire bottle on top of that! She likes her food! We're going to try again tomorrow, and see how she does.

Andrea's oxygen is still at 2 liters, but it is no longer what they call high flow. Now it's just standard oxygen, running between 25 and 28%. Her blood gases were good - now they'll check them again tonight and make sure all is still well.

FYI - I'll be turning 40 on Sunday. Ken (the most awesome husband in the world) is taking me away for a few days to celebrate, and recharge. Mom and Dad are going to visit Andrea, and I'll check in by phone. I will post tomorrow (Friday) and am planning to bring my computer as well. However, if I have no Internet access, I may not be able to post Saturday and Sunday. Just keep praying, and don't worry if there are no new posts. If I miss the weekend, I'll be back on Monday.

"A difficult time can be more readily endured if we retain the conviction that our existence holds a purpose - a cause to pursue, a person to love, a goal to achieve."

John Maxwel

More Milk, Less Oxygen

Andrea is doing better today, as she recovers from her respiration problems of last week. She is down to 2 liters of oxygen per minute, at 25%. Her weight has increased significantly since Friday, but her milk had not been adjusted for her new weight. She is supposed to get 150 calories per kilogram of weight. She now weights 1865 grams (4 pounds, 1.8 ounces) so she should be getting 35 ml at each feeding. Believe it or not, a 5 ml increase is too large to make in one day, so today we went to 32 ml. If all goes well with that, she'll be increased again tomorrow, and possibly again on Friday. Today was the fifth day of her antibiotics, and all the cultures have continued to come back negative. What a relief! The doctors are going to continue the medication for two more days, and if all is well, she'll be taken off it.

Physical therapy is now part of Andrea's daily routine, Monday through Friday. She does well, but seems to hate the process. She cries while she's having her arms and legs moved, even though it doesn't hurt her. I think she just wants everything to be on her terms, and is annoyed at being manipulated. Andrea is remarkably strong, and is able to move her head from side to side when she's on her stomach. She can't lift it very far, but is able to it turn from one direction to the other. When Andrea is on her stomach, she'll also push up on her arms and can lift part of her chest off the mattress. She's a tough kid.

Tomorrow marks Andrea's 12 week birthday. If she has a good night (no breathing problems, eats well, etc.) I'll be working with a lactation consultant to see if Andrea can learn to nurse. I'm only mentioning it today so that those of you who are freaked out by nursing (I can name a few from among the followers, LOL) know if advance that you might want to skip the post, or skim first, in case it's too graphic!

Please keep praying and sending us good wishes and positive thoughts. We are relieved that Andrea has done so well so far, and are optimistic that she is once again moving in the right direction.

"To climb steep hills requires a slow pace at first."

Shakespeare

Grammy's Baby Girl

Mom came to visit today, and was there while Andrea was having physical therapy. Part of PT is holding Andrea in different positions to let her stretch and exercise her muscles. Much to our surprise, the therapist asked Mom if she wanted to hold Andrea. As you can see, Mom didn't need much convincing. PT is good for Andrea - the therapist works on range of motion and helps reshape her head from the CPAP. Andrea can already turn her head from one side to the other when in the crib, so hopefully she won't wind up with a flat head on one side. The therapist shows us how to reposition Andrea and help her get stronger.

Things are pretty much the same in Andrea's world. She has been moved out of the corner "room" she occupied since birth, and is now located in the center "pod" of the NICU. I know it's irrational, but I hate any changes in Andrea's world. I'm superstitious. I want to leave her in one place and let her grow! The good news is that Andrea doesn't seem to care that she's been moved, and she's still doing fine in her new crib. It's way easier to change her and pick her up from the crib than it was in the isolette. The doctors are continuing to monitor her breathing, and have tried to decrease the oxygen flow today from 3 liters to 2.5 liters per minute. She's getting about 28% support.

Eating is not Andrea's problem, but it looks like gluttony might be. We have discovered that she'll eat whatever she's offered, even if it's more than she's supposed to have. She drank almost 40 ml of milk at lunch today (instead of the 30 she should have had) and started to desat. (Low oxygen saturation in her blood). She was able to come back on her own, without more oxygen, but it's still scary when that happens. You'd think she'd stop eating when she's full... but so far we haven't seen that!

I forgot to ask about her weight today, but she looks good and seems to be recovering from her weekend ordeal in her own time. We have to be patient, and try not to worry. It's just all too draining.

Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight.

Benjamin Franklin

Open Crib!

Andrea in her open crib. She looks big, because the crib is actually pretty small.



Where to begin today? As you can see from the title of the post, Andrea has been moved into what is called an open crib. It's actually the same bassinet (or remarkably similar - Kenny was in one when he was born) that newborn babies are put in - It's way smaller than even a portable crib. The reason this is big news is that the open crib provides no warming. Andrea is maintaining her body temperature all on her own. She was moved about 1:30 p.m. yesterday, and was still doing well when I saw her this morning. She looks bigger, because the crib is so small. She's wearing pajamas (with feet!) and is swaddled in blankets to help her stay warm.


Andrea's breathing continues to be a puzzle. She got her blood transfusion on Friday, which helped somewhat. (Thank you for the blood! It came from one of our directed donors!) Her color is much better, and she is back to her old self in terms of personality. She has the strength to give the nurses a hard time. She was providing a lot of resistance to the physical therapist today. The puzzling part is that she is still requiring more oxygen support than in the past. She is on 30% oxygen and 3 liters flow rate. When she first came off CPAP, she was only at 2 liters. Still, on x-ray her lungs are clear, and the doctors tell me they're expanding. We just don't know why she needs this much help right now. So far, the cultures from the blood and spinal tap have been negative. However, the doctors have decided to keep her on antibiotics for a few more days, just to be safe.


Andrea has reached another major milestone. She is more than quadruple her birth weight, weighing 1850 grams (4 pounds, 1.3 ounces). Whatever else is going on with her, she has maintained her interest in food. She has continued to devour her four bottles a day, and has no problem with the tube feedings, either. When I fed her today, she looked like she could keep going, if only we'd give her more milk. I think the voracious appetite is contributing to the weight gain, and we need her to grow! I hope her lung/breathing issues will work themselves out as she gets bigger.

As always, please continue to pray. We are thankful for all the prayers and support. We need to be strong and optimistic for a bit longer, and then hopefully this can all become a memory.

"Great difficulties may be surmounted by patience and perseverance."

Abigail Adams

NOTE: If anyone wants to contact me without posting publicly, I am reachable at tori.zimmerman@gmail.com.

Two Steps Forward, One Step Back

I like this picture of Andrea - she is sticking her tongue out, pretty much echoing my feelings some time. We're worn out, and I imagine she is too. I can't believe she's NOT sick of being poked, prodded, stuck and x-rayed. She has been a trooper, and we are very proud of her fighting spirit.

I went to see Andrea today, and she is somewhat better as a result of her blood transfusion. She is more active and feisty (as she has been since the beginning), and her color is good. She is still eating like a champ, both on the bottle and the feeding tube. She has one more day of antibiotics, depending on what comes from the cultures they took on Friday. There is some mild edema in Andrea's pelvic region, so the doctor decided to give her one more dose of Lasix, the diuretic she had before the blood episode. Again, they'll observe, and see what happens.

On the down side, she is still requiring more oxygen than she needed previously. Early last week, she was on one liter flow rate, and about 25% oxygen. Today, she was at 2 liter flow rate and 35% oxygen. It's hard to know why that is the case. The doctor ordered a chest x-ray, which showed that her lungs are clear, and they are expanding. There were some results from the last blood test that the doctor didn't like, so those tests were being repeated tonight. (Blood gases, etc.) Fortunately, those are just a foot stick, so she won't lose much blood for the test.

Andrea has been doing well maintaining her body temperature, and was going to be given a trial in an open crib today. Basically, she'll be moved to a bassinet, like the hospital uses for newborns in the nursery. The nurse will monitor her temperature and vital signs for 12 hours and see how she does. The isolette will remain in her "room" with the warmer on, so she can be moved back in immediately if needed.

We are trying to see this oxygen as a blip in Andrea's otherwise smooth recovery. We have to have faith that the doctors will figure out what's going on, or that Andrea's lungs will grow and become better able to keep up with her needs. We were warned at the beginning to expect days like these, but we were lulled into a false sense of security. Please continue to pray for Andrea. She is fighting so hard to get big and strong, but there is little we can do to help her along besides pray.

“There is nothing in life so difficult that it cannot be overcome. This faith can move mountains. It can change people. It can change the world. You can survive all the great storms in your life."

Dr. Norman Vincent Peale

What a Difference!

Andrea got her transfusion late last night, and we were able to see a difference already today. She was well enough that the nurse was able to give her a bottle for her 9 a.m. feeding, and she was able to fight me when I tried to take her temperature and change her diaper. She is by no means 100% herself, but we believe that all the breathing trouble yesterday really took a lot out of her. 120 breaths a minute is pretty fast, and she was panting for a long time.

The IV needs to stay in for now - she's going to get at least three days of antibiotics. If the cultures come back negative, that'll be the end of it. If they're positive for some kind of infection, she'll get 7 to 10 days of medication. Her nurse today managed to dress her, despite the IV in her arm. It was a huge relief to us to see her in her own clothes, looking healthy. Last night, she was in the isolette, which had been heated again, and she was naked except for her diaper. We've been spoiled by seeing her dressed. She just looks better in clothes.

I spoke to the doctors today, who were also relieved that Andrea is doing better. I believe they were doing what they thought was best when they requested permission for a spinal tap. I feel terrible that Andrea had to endure that, especially since it took a few tries to get a sample. Still, I'd feel worse if we denied permission and then Andrea got really sick. The doctor in charge reassured me that they will be more proactive in deciding when to give Andrea blood - they'll do transfusions when her hematocrit is 25% or less. It was 23% yesterday. (Hematocrit is the percentage of red blood cells in the blood)

A few of Andrea's nurses follow this blog - I trust them to correct any of my inaccurate statements. I try to pay close attention, but sometimes the doctors lose me. The nurses have been wonderful about making sure we understand what's happening, and why. The doctors do the same, but we see much more of the nurses, and they're better at the explanations.

Thank you for your concern yesterday. She is really better today - although not her complete self. Her color is WAY better than it was - she's rosy pink again. Her appetite is still excellent. She has lost some weight, between the diuretic and not eating for a few meals yesterday. She'll pack it back on soon, though. We're lucky that eating has not been a problem for her.

“Take heart again; put your dismal fears away. One day, who knows? Even these hardships will be grand things to look back on.”
Virgil

Friday's Post, a little late

We had our first truly scary experience on Friday, May 15. I spent my morning with Andrea as usual, but left a little earlier than normal. Andrea was lethargic, and not tolerating being held, so I was only sitting bedside while she slept.

At about 2:30 in the afternoon, I got a call from the NICU doctors, asking for authorization to do a spinal tap. Andrea was having increasing episodes of desat, despite increased oxygen support. Her respiration was fast, sometimes over 130 breaths per minute. The doctors were concerned ghat she might have meningitis, and needed the spinal fluid to diagnose. I gave permission, of course, and then we all descended on the hospital. Mom and Dad came down, so Dad could take Kenny. Ken met us from work.

We got there just as the doctors were doing the spinal tap. Unfortunately, in the first two attempts; there was blood in the fluid (an artifact from the tap, not a symptom of a problem) and it was therefore unusable. The doctors had to wait several hours before repeating it, to give Andrea time to recover. A third attempt some time in the middle of the night was successful.

While waiting for the spinal tap, the doctors took blood for a blood culture and ran Andrea's blood count. Her hemoglobin was very low, and so a transfusion was ordered. Thankfully, we had a pint of "directed" blood waiting in the blood bank. While waiting for the results of the tests, the nurse began a transfusion.

Ken called the NICU this morning, and the initial indications are that Andrea does not have meningitis. The blood culture will still be examined in 48 hours to rule out any other infections. Andrea was finally able to eat at 3 this morning (her last meal had been at 3 p.m. on Friday, so she was HUNGRY!) She will be on a three day course of antibiotics, and if nothing grows in the cultures that will be the end of it. If they see signs of infection, she'll remain on antibiotics for 7 to 10 days.

I got home from the hospital at 11 last night, and was too tired to revisit all the scariness in order to write this post. We are relieved that the initial news today is so encouraging. In the past, Andrea has responded well to transfusion, so we're optimistic that the same will be true today.

Please, please, please continue praying for Andrea. This experience really drove home to us how complacent we've become. Even though we knew we'd been very lucky, this drove home how easily it can get worse.

“Perhaps our eyes need to be washed by our tears once in a while, so that we can see Life with a clearer view again.”
Alex Tan

Eleven Weeks is a Long Time

As of 5:29 p.m. today, Andrea is celebrating 11 weeks of life. We are beyond thankful that she is here, and doing so well. However, the fact remains that eleven weeks is a long time to do anything, day in and day out, and for some reason it really hit me today. I find I'm completely losing track of what day of the week it is, since every day is exactly like every other. I always know the date, because I have to mark it on the vials of milk, but I usually can't tell you if it's Saturday or Thursday. If I have any clue at all, it's because I have to make sure Kenny has the right stuff for his "specials" at school. We continue to watch new babies come and go from NICU, and we're still holding court in Andrea's corner. Granted, I'm NOT complaining. We are so lucky that Andrea continues to progress. We are just longing for the day when we can have her home, and just visit our dedicated nurses, therapists and doctors once in a while.

Andrea gained more weight; she is now 1690 grams (3 pounds, 11.6 ounces). We're getting closer and closer to an open crib! Unfortunately, her thyroid screen came back abnormal again today, so we're waiting to hear what the endocrinologist recommends. Andrea is also going to be given Lasix, a diuretic, for three days. There is some concern that she still needs oxygen, and the Lasix will help remove fluid from her lungs, if that's what's causing the problem. We know it's also been a long time since Andrea had a transfusion, which may be contributing to her fluctuating oxygen levels. Her bone marrow is making blood cells at a good rate, but they mature very slowly, and she still looses more blood than she makes. The thyroid test alone is 4 ml of blood, and she only got 16 ml at her last transfusion. So, we won't be surprised if it happens sometime soon. However, Andrea will NOT be a happy camper to get blood... she can't be fed for 8 hours if she gets blood, and Andrea loves her food! I guarantee there will be much crying and complaining if she's denied two meals.

You can't see it in this picture, but Andrea is wearing real pajamas. They have feeties and everything. It was very cute to watch her in them. She's not used to having her feet and legs covered, and she kept trying to kick her feet free. I have to say, she's too cute for words in her PJs.

Thank you for getting us to 11 weeks. Ken has been a work horse, going to work (because someone has to pay the bills), doing the lion's share of housework, helping care for the boys, and still getting to the hospital as often as he can. So many people have reached out and helped, often just doing what needs to be done, without waiting to be asked. Our neighbor across the street mowed our lawn! Many of you have been feeding us for weeks, and keeping the boys busy. We are blessed in Andrea's good health, and blessed in our friends and family. Please continue to remember Andrea in your prayers, and pray that her lungs will grow strong and she can get rid of the oxygen.

“No matter how difficult the challenge, when we spread our wings of faith and allow the winds of God's spirit to lift us, no obstacle is too great to overcome.”
Roy Lessin

All OK now, but what a day!

First off, Andrea is fine. However, she gave me a huge scare today. Our morning began with waiting for the eye doctor to come for Andrea's repeat exam. The good news there is that there is nothing definitive wrong with her eyes. There is a chance that she has stage I retinopathy, which usually resolves itself. It's not definite that she even has it, but if she does, it's not a huge worry. If she had, or developed Stage II or III retinopathy, that is treatable with laser eye surgery, but the ophthalmologist doesn't think that's going to happen.

Since we had to wait for the eye exam before she could eat, Andrea's 9 a.m. meal was postponed until after 9:30. By the time I got her bottle to her, she was ravenous. She attacked the bottle like she was starving. There was slightly more than her normal 30 ml in the bottle, which isn't a big deal. Andrea usually dribbles a fair amount. Well, today, she didn't dribble, and drank the entire bottle in her usual 6 minutes. I burped her, and laid her down on my lap for some Mommy and Me time. Almost immediately, Andrea desated to 24 (the lowest I ever saw) and her heart rate dropped to below 50 beats a minute. The nurse was up in seconds, and got Andrea back in the isolette. She cranked up the oxygen and sort of massaged her chest. The entire incident lasted maybe a minute, but it was the scariest thing I've seen in NICU yet. But as I said, Andrea is completely FINE now.

Adrea's weight today is 1650 grams, (3 pounds, 10.2 ounces) and she has been moved to four bottles a day. Every other feeding is by bottle, allowing Andrea time to recover from the exertion of drinking on her own. We anticipate her being exclusively bottle fed in about a week. PT continues to go well, and the doctors are repeating Andrea's thyroid screen tomorrow. Chances are, she will need a blood transfusion pretty soon. They take a fair amount of blood for the thyroid tests, and her body just doesn't make new cells fast enough. We have a pint of blood in reserve from one of our directed donors, so it's there as soon as she needs it. Andrea is still on nasal cannula, getting 23% oxygen at a rate of 1 liter per minute (Down from 2 liters a week ago). 21% is room air, so we're getting close. The temperature on the isolette is down to 28.3 degrees Celsius. At 28 degrees, she can go in a crib!!!

As for me, I saw the doctor for yet another follow up to my incredibly icky wound. (And you all thought that was in the past!) The good news is that it's much better than in was. Ken has been packing it every day for several weeks. (He really loves me!) The bad news is that it's STILL not healed. We have to continue the cleaning and packing for at least a few more weeks. Hopefully, my next appointment will be my last.

We continue to try to remain upbeat. When we're in the NICU, we always maintain a positive attitude. We are fortunate that Andrea is doing so well. The scary thing is that stuff can still go wrong, and go wrong very quickly. The nurses, doctors and therapists in NICU are amazing - nothing seems to phase them, and they deal with Andrea's ups and downs with great calm. We hope to learn that skill from them. We have been living this unnatural life for almost 11 weeks, and sometimes it's hard to keep going. We cling to the dramatic improvements Andrea has made so far, and continues to make every day. There is a light at the end of the tunnel.... but the tunnel is longer than we ever imagined.

A quick shout out to my Demarest friends - your emails, notes, cards, gifts and meals mean more to me than I'll ever be able to express. You keep me going when I'm feeling overwhelmed, and I miss you all. You're the best group of people anyone could ask for in coworkers and friends.

"With the fearful strain that is on me night and day, if I did not laugh I should die”
Abraham Lincoln

Hands Up, Baby Hands Up!

Believe it or not, Andrea is sucking on a regular pacifier, the smallest one made for "full term" babies. Prior to this one, she was using smaller ones made for preemies. Granted, you can barely see her face, but she's happy, and she really enjoys having something to suck on. She's learning to soothe herself, but isn't too jazzed about sucking her thumb. (I keep putting it in, she keeps spitting it out) She is beginning to express her boredom with the world around her by crying and fussing, which is wonderful to see, but probably hard on the nurses. She likes to hear people talking, and seems to enjoy being the center of attention. If the nurses are caring for other babies for too long, Andrea starts to exercise her lungs!

Andrea's weight remained the same from yesterday to today, and she didn't grow any longer since last week. Since she's the same size, her food isn't increasing, but the doctor authorized a move from three bottles a day to four. Every other feeding will be by bottle, as long as she can tolerate it, and doesn't lose weight. Since she's sucking down her milk in only 5 to 6 minutes, (when she can take up to 30) I don't think the weight issue is going to be a problem.

The temperature on the isolette has been dropped to 28.7 degrees (Celsius). Room temperature is 28 degrees. Once Andrea is maintaining her body temperature at 28 degrees, she can be moved to an open crib. She has been wearing her own shirts and hats, and we're going to try some pajamas tomorrow. She looks so cute!

PT is going well. The therapist is working with Andrea to help her build strength and range of motion. She is also working to help reshape Andrea's head after the effects of CPAP. It really looks dramatically better than it did, but it is still misshapen. The therapy will help it get better, faster.

Thank you for the continued prayers and support. We are at day 75 today. Each individual day seems to last a hundred years, and yet I still sometimes think this is all a dream from which I'll awaken. We are blessed in Andrea's incredibly positive recovery, and also in our family and friends who have been there every step of the way for us.

"Success is the sum of small efforts, repeated day in and day out."
Robert Collier

Another Step Forward

Andrea reached another milestone today. Her weight is 1605 grams, or 3 pounds, 8.6 ounces. She broke the 3 1/2 pound mark! She is getting three bottle feedings a day, of 30 ml (1 ounce!) of fortified milk. She still has a feeding tube in her mouth, for the other 5 feedings. Today, the nurse remarked about why the tube wasn't in her nose. Since it's in her mouth, it needs to be removed before each bottle feeding, or Andrea can't make a good seal around the bottle. The nurse decided to replace the tube in Andrea's nose. Now we know why the previous nurses kept putting it in her mouth. As soon as the nurse tried to insert the feeding tube, Andrea decided to stop breathing. She was not in distress, and the nurse was not blocking her airway. Andrea was just annoyed, and made sure we knew it. Her oxygen level dropped to about 60%, and her heart rate slowed to 60 beats a minute. (It's usually about 160) As soon as the nurse stopped trying to put the tube in, Andrea's oxygen level improved and she was back to normal in no time!

Andrea started getting physical therapy (PT) today. A therapist will come every day, Monday through Friday, to work on muscle tone and range of motion with Andrea. She will also help reshape Andrea's head. Andrea did very well in her first session today. Of course, she complained loudly, so that we didn't think we got away with anything, but she tolerated the movements and maintained her oxygen saturation levels. As we get closer to discharge, the therapist will teach us how to work with Andrea, so she continues to develop strong muscles and bones.

"Great changes may not happen right away, but with effort even the difficult may become easy." Bill Blackman

Happy Mother's Day!

Andrea's primary nurse is an amazing person. She was scheduled to work today, and I arranged with her to be at the hospital early, in order to give Andrea her bottle, since it's Mother's Day. When I got there, Andrea had a card for me, written out (she has very neat handwriting for a 10 week old baby!) and signed with a foot and hand print. So many of the things that happen with a full term, "standard" delivery don't happen in situations like this. We never got footprints from Andrea's birth, among other things. In the scheme of the universe, that shouldn't be a big deal, but it's still something we missed. This card is the first tangible record of how small she really is, and she's more than three times her birth weight. It makes it impossible to even process how small she was at the beginning. So, KL, thank you for making my mother's day so special. You continue to make this experience as pleasant as it can be.

Andrea is moving along like gangbusters. She is up to 1570 grams (3 pounds, 7.4 ounces). She'll get measured at 6 p.m. tonight. She is now getting 30 ml (one full ounce) of milk at each feeding. She's also getting three bottles a day starting today. The other 5 feedings will still be through her stomach tube. Sucking from a bottle expends considerable energy for Andrea, and she needs to work herself up to bottles all day. I was there to feed her at 9 this morning, and she drank her whole feeding in 6 minutes. She's allowed up to 30 before the nurses would turn to the stomach tube to finish the feeding. That has not been a problem for Andrea. I came home to see Kenny, and Ken is going to give Andrea her 3 p.m. bottle. It'll be the first time he's been able to feed her. It is such a joy to hold her as a swaddled baby. She's still so tiny, but she seems more sturdy when she's bundled up.

Even though it's Mother's Day, Ken was able to get to the hospital to see Andrea, and got a chance to feed her for the first time. There aren't too many pictures of Daddy on the blog, so I decided to include this one here.

We continue to be amazed at Andrea's slow and steady progress. At the very beginning, Ken and I decided that we would consider all days positive, unless Andrea actually lost ground. So, a neutral day, where she moved neither forward nor back, was still a positive day. Andrea has had remarkably few "bad" days. Even her brief return to CPAP, after 48 hours on nasal cannula, was a mere blip in her recovery. We are truly lucky and blessed to have things going as they are. We are anxiously awaiting her homecoming, but it will be bittersweet. The nurses, therapists and doctors have become an extended family to us. We love that they care about our baby, and are continually grateful for the work that they do.

"It does not matter how slowly you go so long as you do not stop."

Confucius

Waiting for Dinner

Amazingly enough, Andrea had another good day. Once again, she's wearing "real" clothes - something we bought for her. When I was in the hospital, I always felt better when I could wear my own stuff. We feel better when Andrea is wearing her own stuff.

Andrea's weight today is up to 1540 grams (3 pounds, 6.3 ounces). Since she gained back all the weight she lost, her food was increased to 28 ml. 30 ml is one ounce. The isolette temperature was lower again today, as she works toward getting into an open crib. (1800 grams is the goal for that). Andrea continues to do well on nasal cannula. Her oxygen support is slightly higher right now, 30%, to allow her to concentrate on staying warm.

Sorry for the short post, but all is well, it's late, and I'm very tired. I'm off to crash now.

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

Too Sexy for My Shirt

Today, Andrea is wearing her very own shirt. It is the first time she's been in a piece of clothing that didn't come from the hospital. We are very limited in what she can wear, since it needs to have snaps in the front, can't go over her head, and needs to leave her legs free. I suppose she could have something on her legs, but the nurses need access for taking her blood pressure and drawing blood, so it's easier to leave them bare. Still, I like seeing her in something other than the hospital white, and she looks like she's posing.


All remained the same for Andrea today. The isolette temperature is lower than yesterday, as Andrea continues to regulate her own body temperature. She is wrapped in fewer blankets, and her temperature is monitored to make sure she's not getting too cold. She gained back some of the weight she lost yesterday, and will hopefully continue to do so. She can't have increased food until she's gained the weight back.

I was able to give Andrea one of her bottles today. She is adjusting very well to bottle feeding, consuming her 27 ml in about 15 minutes. I noticed she's letting less dribble out the sides, too, so I think she's got a better "grip" on the bottle. As well as Andrea does with the bottle, she does expend considerable energy to drink. She'll take four or five sucks, and then pause to catch her breath. After she's done eating, she goes right off to sleep. which is really the best thing for her, anyway.

"Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless.”
Jamie Paolinetti

10 Weeks Today!

Well, as of 5:29 p.m. today, Andrea is celebrating 10 weeks (or 70 days, as they say in NICU) of life! When we began this journey on February 26, I don't think any of us believed we'd be where we are right now. I keep waiting to wake up and find this has all been a dream. We continue to be extremely grateful for the amazing progress Andrea is making.

Andrea's repeat thyroid screen came back fine, meaning that it appears whatever was happening with her thyroid and pituitary glands has resolved itself. The NICU doctors are still going to consult with the endocrinologists, and they may order a repeat next week, just to be sure. We'll have to wait and see (again). Still, this is very good news.

The nurses are continuing to lower the isolette temperature, allowing Andrea to regulate and maintain her own body temperature. She is wearing an undershirt all the time, and gets swaddled in blankets to help her along. She lost some weight since yesterday, which was not unexpected, since she's now working to stay warm.

Feeding is continuing at 27 ml (since she lost weight, the doctors can't increase her milk amounts), and twice a day she gets a bottle feeding. Andrea has inherited the appetite of her parents, and has not had any trouble learning to drink from a bottle. She paces herself well, and stops when she needs a break. Even with the resting, she can get through her whole feeding in less than 15 minutes. (If it took more than 30, she'd have burned more calories eating than she consumed... I'd love to have that problem.)

Andrea is what the nurses sometimes refer to as an "old baby". Even though she's technically 36 weeks gestation, she has been "out" for 10 weeks, and is getting more alert and active, in a way a newborn isn't. She sometimes cries just because she wants someone to come interact with her. Once she reaches 1800 grams, she can be moved to an open crib. At that point, we can give her a mobile, so she'll have something to look at for entertainment.

Rejoice and celebrate with us this milestone. We thank God every day that she is here and doing well. As tiring as it can be to drive to New Brunswick, or pump milk, or even write this blog, I am so ecstatic that Andrea is here, and well, and needs me to visit, and feed her, and share her story with her family and friends. We are so lucky! Thank you for all your support and prayers.

“Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.”
Epicurus quotes

Swaddled Up

Now that Andrea is eating from a bottle, at least once a day, and breathing on her own except for some oxygen support, the next challenge is to see if she can maintain a body temperature. In order to measure how well she can keep herself warm, she's now dressed in an undershirt, swaddled in a blanket and covered with another blanket. Then the temperature in the isolette is lowered, and the nurse takes Andrea's temperature. If Andrea is too hot, the temperature in the isolette is lowered further. If she is too cold (which hasn't happened yet) they would warm up the isolette.

Andrea weighs 1520 grams (3 pounds, 5.6 ounces) today. She is finally approaching the weights you usually hear about when people discuss premature babies. She is still under size for her age, (Kenny George was born at 37 weeks and weighed 6 pounds, 12 ounces!) but she's catching up in her own time. Her milk was maintained at 27 ml today, but will be increased tomorrow if she does well today. She will have a repeat of her thyroid screen tomorrow as well, and if it's normal, we will leave thyroid concerns behind.

I got to feed Andrea her bottle today. Right now, she gets one a day, although the nurse was going to request going to every 12 hours starting tomorrow. It's a lot of work for Andrea to suck, swallow and breathe all at the same time, and she needs the practice to build skill and stamina. She drank her whole bottle in less than 15 minutes today, and finished with a nice loud burp to show she's playing with the big kids now. The hardest part for me is learning how to hold such a tiny baby - she's too small to put over my shoulder for burping, and she even ate stretched out on my lap, rather than cradled in my arms.

Tomorrow marks 10 weeks of life for Andrea. We can not tell you how blessed we feel to have made it this far, with so few complications. Please continue to pray for Andrea... we are approaching the point where we can almost see the light at the end of the tunnel. We're not there yet, but I believe we're closer to the end than we are to the beginning.

“Prayers go up and blessings come down”
Yiddish Proverb

Feeders and Growers

Andrea enjoyed another positive day. Her head is rapidly returning to its normal shape, now that the CPAP is gone. You can see in today's picture that the back of her head is a little bigger than normal, but it's about half the size it was a week ago. Her hair is very fine and fluffy - like a baby chick - and sort of ginger colored. It's kind of a reddish brown right now.

Andrea's weight is now 1440 grams (3 pounds, 2.8 ounces). She is now what the staff refers to as "a feeder and grower". She is (knock wood) essentially healthy. She doesn't need much in the way of true medical treatment. She is being kept warm to conserve calories, and her food is supplemented for extra nutrition. She gets vitamin and mineral supplements as well. Other than that, she is being fed and allowed to grow. She actually could be moved out of NICU (neonatal intensive care unit) and into SCN (special care nursery) because she requires so little specialized treatment. Much to our relief, she's staying in NICU for now. We prefer slow and steady, with no sudden moves. Also, her four primary nurses will move to SCN with her when she goes, so her caregivers will remain consistent.

Just a note - this is National Nurses' Week. We try to thank Andrea's nurses every chance we get, but I wanted to use today's blog to publicly thank them all again. In an effort to respect their privacy, we never mention any of them by name here, but they know who they are, and we love them for the excellent job they've done, and will continue to do, to help Andrea come home. Today's quote is for all the RWJUH NICU nurses.

"To do what nobody else will do, a way that nobody else can do, in spite of all we go through; is to be a nurse." -- Rawsi Williams

Swaddled and Fed

Andrea had another red letter day today. She gained 50 grams since yesterday, making her 1425 grams (3 pounds, 2.3 ounces) and was measured at 38.5 cm (15.2 inches). For a few weeks, the nurses skipped taking a length measurement, since her head was so badly distorted from the CPAP. I'm amazed at how quickly it's reverting to its normal, rounded shape. It's better enough that the nurses felt a length measurement would be reliable. Andrea's milk has been increased again to 27 ml. The quantity is based on her weight, so as she gains, especially so quickly, her meals need to be increased to keep pace.

Andrea spent all night at 25% oxygen, only getting bumped up to 30% for her second bottle feeding. She got her 27 ml (30 ml = 1 oz) in a bottle at her 3 o'clock feeding, and sucked the whole thing down in less than 15 minutes. After she ate and was burped, I got to hold her all swaddled up, as you can see from today's picture. Under her blankets, Andrea is actually wearing an undershirt, another momentous event. She's finally big enough for some clothing!

The bottle feeding has been ordered for once a day, as long as Andrea can tolerate it. The nurses are free to decide which feeding is best. She seems to be pretty alert in the afternoons, and she needs to be awake enough to participate. Remember, for over 9 weeks, all her meals were delivered to her via tubing, allowing her to be passive. Now she has to work for her meals!

"I asked God for all things, that I might enjoy life. God gave me life, that I might enjoy all things."
Unknown Author

The Best Day Yet!

So many momentous things happened today, it's hard to know where to begin. First off, Andrea is now triple her birth weight! On top of that, she actually weighs more than 3 pounds! Her weight today was 1375 grams (3 pounds, 0.5 ounces)! Her birth weight was 450 grams, so we are more than 3 times that amount! Her milk has been increased to 26 ml, and she managed well for another day on nasal cannula. Her oxygen support is a very low 25%, and she had no serious desats. (There are times she desats because she's crying, the nurses are changing her, etc. Those events don't matter, as long as Andrea's oxygen levels come back up pretty quickly.

The most exciting thing that happened today is that Andrea had her first bottle! No one really knew how she would take to it, and the nurse was prepared in case Andrea couldn't manage just yet. Her feeding tube was moved from her mouth to her nose, because she won't be able to suck the bottle with the tube in her mouth. Also, she will only get one bottle a day, at most, for a few days. The nurses will gradually increase the number of bottles as she gets stronger. In the meantime, Andrea needs to eat, so the tube needs to stay.

Andrea getting her first bottle. She is being fed by her "primary" nurse. This woman cares for Andrea whenever she is assigned to work. Andrea has 4 primary nurses - two who split the day shifts and two who split the evenings.
Andrea getting burped for the first time. Unfortunately, I missed the look on her face right after the burp. She looked bewildered!

Much to our surprise, Andrea ACED the bottle! She drank the entire 26 ml in about 20 minutes, and kept it all down. I was worried she might spit up or have other problems, but she did great! She would suck a few times, then rest, but she was always ready to try again. From the look on her face, Andrea did NOT like being burped! When she is fed through the tube, she doesn't get any air in her belly, so burping wasn't necessary. That'll be something else she needs to get used to! If Andrea has a good night, and is awake and alert when it's time for a feeding tomorrow, the nurse will try another bottle. The idea is to get Andrea used to bottle feeding without fatiguing her too much, or causing her to burn too many calories. For the time being, all the feedings will be done by the nurses. Once Andrea is better at the eating, Ken and I will be able to feed her when we're there.

"Your life is a gift from the Creator. Your gift back to the Creator is what you do with your life."

Billy Mills

Another Try

First, no picture today, because I seem to have misplaced my camera. I had it at my nephew's birthday party, and can't lay my hands on it right now. It's either at my sister's house, or hiding in the disaster that is my car. Sorry! Will post today's picture tomorrow, if I find the camera.

We had a big surprise when we went to see Andrea today. She was off CPAP again, and back on nasal cannula. We really thought the doctors would give her a few days on the +5 CPAP and see how she did, but last night they decided to give it a shot. We have to admit, she looks more comfortable with the cannula, and seems to have an easier time resting. Her blood gases were good today, but we have to see what happens over the next few days. Last time, she lasted about 48 hours.

Andrea's weight is up to 1340 grams (2 pounds, 15.3 ounces). She's 10 grams away from tripling her birth weight, and 21 grams away from 3 pounds. She's had no changes in her feedings, although today she yanked out her feeding tube, so was delayed in getting her 9 a.m. meal. Of course, then she was crying because she was hungry, and didn't get fed on time.

One of my good friends, and the first blood match we had for Andrea, donated another pint of blood today. We used the one she previously donated, and are now drawing on a pint donated through Ken's job. Now, we have this one "in the bank", which should take Andrea through discharge. Her marrow is catching up to her, and the doctors have to draw considerably less blood, so she needs fewer transfusions. We are so thankful to have the blood in reserve. We may not need it, but it's a relief to know it's there.

I met a new NICU dad today, whose daughter was born on Wednesday. Parents in the NICU waiting room swap stories of how each wound up on this surreal journey with our babies. I get some kind of perverse pleasure in seeing how people react to Andrea's story. No one can believe her beginnings, and reactions range from sad to horrified to intrigued to amazed. Of course, now the reality of Andrea is so far from her beginnings, she's not even the same baby. I try to use our experience to provide encouragement to these new families. I know not everyone will have the experience we had, and some of them will have great sadness. Still, I believe that hearing about Andrea, and how well she's doing, can only make people have more confidence in the chances for success for their own babies.

“I can't change the direction of the wind, but I can adjust my sails to always reach my destination.”
Jimmy Dean

A New Rotation

Well, it's May 1, Day 64 of life for Andrea, as they say in the NICU. On the first of each month, the rotation changes, so we now have a new doctor in charge, a new fellow, and a crop of new residents and medical students. Thankfully, the nurses remain the same. It's unlikely that much will change with Andrea's routine for the next few days, as the new doctors need time to get to know her, and besides, we have a weekend immediately, so we'll see even MORE different doctors and residents until Monday.

Speaking of changes, Andrea was dropped to CPAP pressure of +5, which is essentially the same pressure we all experience in our lungs all the time. She spent much of the day at 20.9% oxygen, which is the same concentration as room air. Her wonderful nurse tested her blood gases right before I left today, to see how her body was dealing with these changes. We'll find out tomorrow. When Andrea was born, we were told that if all went well, eventually she would be able to breathe on her own. She was so small and so far behind, the very concept seemed unimaginable. Now, with the progress she's making, we can start to believe it will happen. Also, she was booted up to 25 ml of her usual, which is 5 WHOLE TEASPOONS. Imagine 5 teaspoons of anything being your entire meal. She seems to get an increase about every other day. The more milk they can get into her, the faster she can gain weight.

As mentioned yesterday, her thyroid test came back normal, but the values were still not what the endocrinologist hoped to see. As a result, they'll repeat the test next week and see if the hormone levels are getting better. IF they are, we might finally be in the clear with this issue. If not, more tests!

Andrea spent a fair amount of time today making sure her opinions were noted. She was exercising her lungs and practicing crying at the same time. Sometimes, it seems that she cries just to hear herself, because we can't figure out what she's complaining about. She's also getting better at sucking on a pacifier, which seems to soothe her, although it does tire her out. Right before our eyes, she's turning into a real baby, which is the greatest blessing we could have asked for.

Difficult things take a long time, impossible things a little longer.

Author Unknown