Thursday, April 30, 2009

9 Weeks of Life!

As of 5:29 p.m., Andrea is celebrating 9 weeks of life! Thanks be to God! I'm too tired for words - I actually fell asleep waiting for Ken to get home from the hospital and I'm writing this much later than I like to be up. Forgive me for being brief.

Andrea now weighs 1300 grams (2 pounds, 13.9 ounces) and is getting 24 ml of her usual diet, every three hours. She tolerated being off CPAP for 40 minutes this morning while I was there, and another 30 minutes this evening when Ken visited. Her thyroid tests came back normal today - we are cautiously optimistic that she may be past that problem.

We said goodbye to some of the residents, fellows and doctors today, as the rotation changes with the first of the month tomorrow. We are so grateful to this wonderful group of people, for all they've done to help get Andrea this far. The doctor who admitted her in February won't be back on rotation again until July, by which time we will hopefully be home. It is hard to say goodbye, since we've gotten to know these people so well. I asked the residents will stop by when they can and see Andrea. Especially this month, she's had a lot of growing, progressing and developing, and they all played a part in that growth. Fortunately, her awesome nurses are still here, and will see her through until discharge. We would lost without them.

I cannot express how grateful we are to be celebrating Andrea's milestone today. Writing this blog is still therapeutic to me, and I can't wait to tell Andrea, as she grows, how many people followed her story and prayed for her as she struggled through her beginnings. Thank you for all you've done, and are continuing to do. Please continue to pray for her.

“Shared joy is a double joy; shared sorrow is half a sorrow”
Swedish Proverb

Wednesday, April 29, 2009

Photo Montage

Today was a red letter day in the life of Andrea. We began with almost two hours of kangaroo care, during which she maintained her body temperature with only my body heat and a blanket for help. She gained more weight, now tipping the scales at 1275 grams (2 pounds, 13 ounces) and her food was increased to 24 ml of fortified milk and MCT oil. Her repeat eye exam went well... she'll be rechecked in two weeks. Her CPAP was decreased to +6 pressure, and her oxygen level was at an all time low of 21.6%. (Remember, room air is 21% oxygen)

While I was holding Andrea today, she started to cry. It's so hard to sooth a baby this small... there's not much back to pat, and I can't bounce her up and down. I can't stand and rock her, because of all the wires. Still, I rocked in the chair, and tried to shush her as best as I could. After a few seconds of crying, Andrea actually found he mouth with her thumb and started sucking it. Besides being absolutely wonderful because it's such a normal baby thing to do, it was too cute for words. Her hands and mouth are so tiny!

The biggest news is that Andrea spent 30 minutes right after kangaroo care in the isolette, breathing completely on her own. (See pictures below) She was wide awake, and I think she looks bewildered. She was concentrating so hard, I'm convinced she was thinking "In, out, in, out, in, out" as she took each breath. She was off the CPAP, and had no nasal cannula for oxygen support. (The tube you see in the picture is her feeding tube) She managed to maintain oxygen saturation levels between 85% and 92% all by herself. She has not ever been disconnected from support for more than a few minutes at a time. This was the biggest indication that her increase in size is helping her develop better breathing.

I got several pictures today, and I couldn't decide which I wanted to use, so I made the layout here.

Tomorrow marks Andrea's 9-week birthday (day 63 of life, as they say in the NICU). Thank you for the prayers that have brought her this far, and that will bring her home, as soon as possible. We have been doubly blessed - by our daughter's progress, and the friends that have gotten us here.

"Don't be afraid to give your best to what seemingly are small jobs. Every time you conquer one it makes you that much stronger. If you do the little jobs well, the big ones will tend to take care of themselves."
Dale Carnegie

Tuesday, April 28, 2009

Like Watching Your Garden Grow

I'm always looking for ways to explain this experience to people fortunate enough to never have it themselves. Today, I was charged with explaining Kangaroo Care to a student nurse who was completing a rotation in the NICU. After my incredibly helpful description of the process and benefits, she and I wound up talking about preemies in general and Andrea in particular. She asked what it was like watching her progress day by day, and the best analogy I came up with is that it's like waiting for your tomatoes to ripen. (All my New Jersey followers can relate to that. Nothing beats a ripe New Jersey tomato)

Here's my reasoning: When you have your tomatoes growing in the yard, every day you watch them get a little closer to ripe. They start out green and unappetizing, and gradually turn orange, and eventually red, when you can finally pick them and enjoy. While you're waiting for the reward at the end, there are still countless things that can go wrong. The aphids can destroy the plants; the squirrels can carry off the tomatoes (our biggest problem last summer) the weather can be uncooperative; the list is endless.

It's the same with Andrea. Every day, the change is almost undetectable. We wait and watch, hoping she'll get to her own finish line, and we'll be able to take her home and enjoy being a family. In the meantime, there are still countless things that can go wrong. We have been so fortunate that things have NOT gone wrong - but we still have so much farther to go before Andrea is ready to leave the NICU garden where she's growing so well right now. You know, when you're growing your own tomatoes, sometimes the temptation is to pick one when it's "almost ready", because you've been waiting so long. I feel that way about Andrea some times. I know she's not ready - but I feel like we've been waiting so long, I wish we could just pick her now.

As you can see... I have too much time to think about things. My mind just goes all over the place during my hour drive to and from New Brunswick every day.

Despite my ramblings about gardens and tomatoes, Andrea is doing well. She now weighs 1245 grams (2 pounds, 11.9 ounces) and will likely be getting a tshirt pretty soon. She was not measured on Sunday, probably because her head is so elongated that it would throw off any measurements, anyway. She is still getting 23 ml of fortified milk and MCT oil, and her nurse believes that she'll be increased to 24 tomorrow. Also happening tomorrow is her follow up eye exam.

One of the big pieces of news today was that I held Andrea for almost two hours outside the isolette, and when she was returned, her temperature was still 98.7 degrees. This is MAJOR progress. She was able to maintain a body temperature with only my body heat for help. She is gradually outgrowing her need of the isolette!

For those of you following MY trials and tribulations, I see the doctor again tomorrow, for another follow up to my incredibly icky wound. It is substantially less icky (so I'm told... I don't look at it, and don't plan to) but still needs to be packed every night. That's how I know Ken loves me... he takes care of it without fail. If the situation were reversed, I'd either kidnap Mom or get a job so I could hire a nurse!

Please pray for Andrea's continued smooth progress. We are fast approaching 9 weeks! For today's quote, I'm sticking with the garden theme.

"The greatest oak was once a little nut who held its ground."

Author Unknown

Monday, April 27, 2009

My Way or the Highway!

Andrea is incredibly strong-willed for such a tiny baby! When I got to NICU today, she was on her back, sort of half awake and half asleep, but not moving very much. Her legs were uncovered, so I tried to put her blanket back on. Every time I covered her, she managed to kick the blanket off. I saw this as just another indication that she likes everything to be her own way all the time. Remember, Andrea is kept in a climate controlled isolette because she can't maintain a body temperature. It's unlikely she was warm - she just didn't want to be covered.

I held Andrea for more than two hours today. She did remarkably well with her oxygen saturation levels, and was finally returned to the isolette because she was getting cold, not because of any difficulty with her breathing. When the nurse put Andrea back, she did all the assessments without Andrea's CPAP tube in place. It doesn't take long, but it was still a few minutes that Andrea was able to breathe on her own, with no help at all. She was retracting a lot, but she maintained oxygen saturation levels above 80% for the whole time. This is definitely a HUGE step forward.

Andrea weighs 1205 grams today (2 pounds, 10.5 ounces). Once she reaches 1250 grams, she may be able to start wearing clothes - just an undershirt to start, but once again, it's another step forward. Her feedings were increased to 23 ml of fortified milk and MCT oil. She's maintaining pretty good saturation levels with +7 pressure on the CPAP and 23% oxygen. I forgot to ask how long she was when she was measured last night - I'll try to remember tomorrow.
The camera batteries were dead, so today's picture was taken over the weekend. She's still too cute for words.

Please continue to pray and send us your positive thoughts. Today was day 60 of life - we're fast approaching 9 weeks!
"Perseverance is not a long race; it is many short races one after another."
Walter Elliott, The Spiritual Life

Sunday, April 26, 2009

Pressure, not Oxygen

Andrea is back on CPAP, as we mentioned yesterday. Last week, there was some discussion between the nurses about whether Andrea needed the CPAP for oxygen or pressure. When she was moved to nasal cannula, that provided oxygen without pressure, sometimes as high as 45%. Now, she's back on CPAP, with a pressure of +7, but oxygen of only about 23%. Room air is 21% oxygen, so it's obvious that she needed the pressure, not necessarily the oxygen. We spoke to the respiratory therapist today, who was pleased with how Andrea tolerated the transition back to CPAP. When I see the doctor again, I'll ask when they might try nasal cannula again.

Andrea gained another 10 grams, weighing 1180 grams (2 pounds, 9.6 ounces). At 1250 grams, she can start wearing an undershirt. Every little step like that brings us closer to her homecoming. She's still getting her 22 ml of fortified milk and MCT oil. She'll be measured tonight, so by tomorrow we'll know if she added any length to her body. This week, she'll have another eye exam on Wednesday, and a thyroid follow up on Friday.

Thank you for your continued prayers.

"I may not be there yet, but I'm closer than I was yesterday."

Author Unknown

Saturday, April 25, 2009

A Small Step Backwards

First off, Andrea is fine. We just hit a little bump in the road. Unfortunately, Andrea was not able to tolerate being off the CPAP. Her lungs were not expanding enough without the pressure, and she had to be removed from nasal cannula and put back on CPAP at 9 this morning. She was having considerable trouble breathing all night, and kept desating, despite increased oxygen. A chest x-ray this morning confirmed that her lung volume was drastically decreased, and the CPAP was reconnected. Andrea seemed quite annoyed at the change. She is back to her old tricks of yanking out the tube.

Fortunately, nothing else has changed for Andrea. She is on full feeds of 22 ml of fortified milk and MCT oil. She weighs 1170 grams (2 pounds, 9.3 ounces) gaining back the 5 grams she lost and adding 5 more. She was awake and alert when we visited today. For the first 10 minutes of kangaroo care, she was staring wide-eyed at daddy. Thanks to her awesome nurse, we have our first portrait of Mom, Dad and Andrea. Here we are.

Andrea's nurse temporarity removed the CPAP for the picture. Isn't she cute?

Please continue to pray for us. We see today as only a minor setback. Andrea has made it clear to us and her nurses that she will progress when she is good and ready to move on. We learned today that she wasn't ready for nasal cannula. The nurses and doctors will allow her to grow a little more, and then try again.

"Problems are not stop signs, they are guidelines."

Robert Schuller

Friday, April 24, 2009

Just like a real baby!

There are so many advantages to the change from CPAP to nasal cannula. One of them is that it's much easier for Andrea to use a pacifier. It actually fits against her face like it's supposed to. Here she is, sleeping and sucking away. She gets fatigued easily, and will suck a few times, then rest, but she has the ability to suck and swallow, which is very important. We are working toward bottle feeding, and the pacifier helps Andrea get ready for that.
Andrea lost a tiny bit of weight yesterday - 5 whole grams. Since the nasal cannula requires more effort from Andrea than the CPAP did, no one is especially surprised or concerned about this minuscule drop. Her food was increased to 22 ml of fortified milk and MCT oil, and she continues to adjust to the new breathing regime. I got to hold her today - the first time without all the head gear. It was wonderful to feel her head against my chest. Another advantage of the discontinuation of CPAP is that Andrea's head has already begun to revert back to its normal shape. It has a way to go, but it's already dramatically better than it was.
Ken had his first kangaroo care experience last night. He's been a good sport about letting me have the time with Andrea, but it just worked out that he was able to hold her for a while. I can't speak for him, but I know he was ecstatic to finally get to hold his daughter. I waited 5 weeks... for Ken it was 8. Unless you've experienced that, it's impossible to describe how unbearable the waiting can be.
I'm not sure if I'll be able to post tomorrow... Ken and I are going to a wedding and grabbing a night in a hotel near the hospital to make it easier to see Andrea on Sunday. I don't know if I will be able to log on from the hotel. I'll try - but don't worry if there's no post. Just keep praying and sending us positive energy.
"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

Thursday, April 23, 2009

8 Weeks of Life!

Today, at 5:29 p.m., Andrea is celebrating 8 weeks of life. That puts her at the gestational age of 34 weeks, if we had been able to hold on that long. In celebration of her achievement, Andrea had a few exciting things either happen already, or in the very near future. The big news is that last night, the doctor ordered the removal of the CPAP tube. Andrea still can't breathe unassisted, but now all she has in place is a nasal cannula, the same thing anyone might have during a hospital stay. You'll see in the picture that the new tube is much smaller than the CPAP, and it's taped to her face, rather than relying on pressure to hold the tubing to her skull. Now, her head can begin to revert to its normal shape. Andrea is obviously more comfortable, and requires less positioning in the isolette, since her head is not being weighed down by all the tubing.

Andrea gained weight again, a whopping 65 grams since yesterday. She's now 1165 grams (2 pounds, 9.1 ounces). As a result, her feedings have been increased to 22 ml of fortified milk with MCT oil every three hours. A happy benefit of the nasal cannula is that the nurses can begin teaching Andrea to drink from a bottle. She needed to be off CPAP and at least 34 weeks old. The pressure from the CPAP could have forced milk into Andrea's lungs, necessitating her being fed only via a feeding tube. Additionally, before 34 weeks gestation, babies don't have the ability to breathe, suck and swallow at the same time. The feeding tube, currently in Andrea's mouth, will be moved to her nose, and the nurses will begin with one bottle a day. The rest of her feedings will continue to be through the tube. Gradually, the nurses will increase the number of bottles Andrea gets each day. Eventually, a lactation consultant will work with me to see if Andrea can learn to nurse. Some preemies can, others can't. We'll just have to try and see. But that's a way down the road.

Andrea's thyroid function was rechecked again today. As last week, the results are still baffling, but not bad enough to force the doctors to treat the condition. They decided to just recheck it again next week. The endocrinologist is following her as well, so Andrea is in good hands.

Thank you all for getting us to 8 weeks. I'm not sure if I've mentioned this before, but I still feel like I'm waiting to wake up, and that this has all been some kind of dream/nightmare. My days have an air of unreality to them, especially when Andrea's progress continues to be so overwhelmingly positive. Your support, friendship, love and prayers have kept us putting one foot in front of the other for 56 days. We will never be able to repay the kindnesses, nor will we ever forget them.

Today's quote is a tribute to all Andrea's nurses. Daily, they make decisions for her, arguing with the doctors when they disagree, making sure that Andrea gets what is truly best for her. (So do the doctors, of course, but the nurses are in the trenches!) As a result, sometimes, the nurses butt heads with the doctors, but they always act in Andrea's best interests. Thank you all NICU nurses.

“Faith is not trying to believe something regardless of the evidence; faith is daring something regardless of the consequences”
Sherwood Eddy

Wednesday, April 22, 2009

1100 Grams!

Sorry for the late post tonight - I know many of you check in before bed, and it's now almost 11 p.m. Fortunately, Andrea is fine. I went to a fund raiser for Kenny's school, and just got home.

Andra has continued to progress. She now weighs 1100 grams (2 pounds, 6.8 ounces) and has moved up to 21 ml of fortified milk and MCT oil. She still can't manage without the CPAP, but she's getting by on lower levels of oxygen. We are now six days since her last dose of caffeine, and she's still had no apnea episodes. We may be in the clear on that. (Hopefully)

This morning, Ken commented that Andrea doesn't cry very much. That's sort of true - since she's fed every three hours and routinely changed, she doesn't have a lot to complain about. Also, Ken is unable to spend hours on end in the hospital, so he doesn't hear her. So, for Ken, today's picture shows Andrea in mid cry.
We continue to be encouraged by Andrea's progress. She is developing nicely, and more and more frequently "normal" things happen to her. She has had hiccups several times, and today had a sneezing fit. I have to admit, it's kind of cute to watch. She is also coordinated enough to try to pull out her feeding tube. I learned today that it's replaced every three days, unless she pulls it out, in which case they change it earlier.

Thank you for all the support - it helps me to write this blog, and to know that so many are reading it. I enjoy the comments and emails as well. We appreciate all the prayers and positive thoughts. They continue to help Andrea move forward.

“You can have anything you want - if you want it badly enough. You can be anything you want to be, do anything you set out to accomplish if you hold to that desire with singleness of purpose.”
Abraham Lincoln

Tuesday, April 21, 2009

Nothing to Report

I am happy to report that absolutely NOTHING has changed in Andrea's world in the past 24 hours. She lost 15 grams of weight, which is next to nothing, and not worth worrying about. Since she had a transfusion yesterday, she actually missed two feedings, which certainly contributed to any loss. (When she gets a transfusion, she doesn't get fed two hours before, two hours after, or during the 4 hour process)

We can tell the transfusion was a good decision. Andrea was much more her usual feisty self today. I was able to hold her for almost two hours - the longest time yet for her to be out of the isolette. She was better able to tolerate being out, and her oxygen levels were not as variable as they've been over the past few days. Her feedings are still 20 ml of fortified milk with MCT oil, and the pressure on her CPAP is still at 6. Unfortunately, Andrea still turns purple without oxygen support.

So, sorry for the short post, but all is well, so there's not much to say. We are thrilled that Andrea is doing so well, and that there IS so little to report. Even the doctor today had little to add. She's doing exactly what she needs to do right now, and just has to try to grow bigger and stronger. Thank you for the prayers that are helping her do just that.

What is impossible with men is possible with God.

Luke 18:27

Monday, April 20, 2009

Another Tansfusion

As we expected, Andrea had to have a blood transfusion today (thus all the tubes and gauze on her hands and arms). We were forewarned, so it didn't come as a surprise. Also, her last transfusion was April 4, so she lasted a long time without one. Andrea's original transfusions were 7 ml of blood. We know she's growing, because today she got 16 ml! This transfusion came from one of our directed donors.... we don't know which one yet, but someone reading this gave Andrea blood, and she's enjoying it today.
Another piece of good news is that it appears Andrea's bone marrow is working properly. When the nurses do blood counts on Monday mornings, they can see that there are immature red blood cells present. That means that her bone marrow is making new cells at an appropriate rate. The transfusions become necessary because the new cells don't mature fast enough, and it's necessary for the staff to take relatively large amounts of blood for various tests. Still, it shows that Andrea is moving in the right direction.

Andrea gained more, now weighing 1085 grams (2 pounds 6.2 ounces). That 2.5 pound mark is getting closer all the time. While I was holding her today, I noticed that she is filling out to the point that she has a "dimple" on her shoulder! She has enough flesh to actually dimple!!! To accommodate her larger size, she's now being given 20 ml of fortified milk plus MCT oil at each feeding. As Andrea grows, the dosages of supplements need to be adjusted for her larger size, so she's getting a larger dose of multivitamins and calcium and phosphorous. In the next day or two we'll know if there were adverse reactions to removing the caffeine from her care regime. As you coffee drinkers know, it takes several days for all caffeine to leave your system after you quit. Andrea's last dose was Thursday at noon. Pretty soon, the nurses will see apnea episodes if she's going to have them.
The nurses are trying to encourage Andrea to use a pacifier - it serves a multitude of purposes from helping her learn to suck and breathe at the same time, to providing comfort when needed. Today, for the first time, I actually saw Andrea sucking on the pacifier. It's the smallest one I ever saw, and Andrea can just about fit it in her mouth, but she seemed to enjoy it. We love when she does "typical" baby things.

Please keep the prayers coming. We gain strength from the support of family and friends.

I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)”

Sunday, April 19, 2009

Daddy's Turn

Ken finally got a chance to hold Andrea today. Unfortunately, he didn't get to kangaroo her, but he was able to hold her whole tiny body while the nurses changed her bedding. Ken has been an amazingly good sport about letting me have time with Andrea - even at his expense. I've been able to have kangaroo care time every day. Hopefully, Ken will be able to have his turn at that one day this week.

We were told tonight that Andrea may need blood tomorrow. It's been over two weeks since her last transfusion, which is an amazing accomplishment. The nurses will do blood counts in the morning, and if they're low, Andrea will most likely get blood. In order to run the thyroid tests last Friday, they had to take a considerable amount of blood, and her marrow isn't very efficient in making more just yet. So, we'll see what happens.

Andrea was weighed and measured tonight. She's 35 cm (13.8 inches) and 1065 grams (2 pounds, 5.5 ounces). She's grown almost an inch and gained another 10 grams. She is still getting her 19 ml of fortified milk and MCT oil, which really seems to be helping her gain steady weight. She remains at pressure 6 on the CPAP, with oxygen between 25% and 35%.

That's all the news for tonight. We had late visits to the hospital, and I'm too tired for words. I'm sure there are bits of news that I'm forgetting right now, but the most important thing is that Andrea is doing well. Nothing came up that is an additional cause of stress (besides the fact that Andrea is sill less than 2.5 pounds, can't breathe reliably on her own, and is still in NICU). We are grateful for no bad news. If you've been reading this blog for a while, you know my philosophy has always been that all days without bad news are good days. Thankfully, today was another good day. Please keep praying - we cannot stress enough how important all that support is to her and us.

"Do not get tired of doing what is good. Don't get discouraged and give up, for we will reap a harvest of blessing at the appropriate time."
- Galatians 6:9

Saturday, April 18, 2009

Bathing Beauty

Andrea wearing Ken's wedding ring. It gives you an idea of how small her hands are. When she was born, the ring would have slid up her arm to her shoulder, so we've made major progress.

In an effort to give Andrea's head a break from the pressure of the CPAP sponges, her nurses try to give her some time off every day. When I hold her, she has the CPAP prongs in her nose, but I support it, rather than relying on the sponges and straps. In this picture, the nurse has given her a total break; no sponges AND no CPAP. Andrea loves the freedom of nothing, but really can't breathe well enough to get by without it. After about a minute, her oxygen level drops too low, and she needs to be reconnected. Still, in this picture, we think she looks like she's lounging on the beach.

Andrea weighs 1055 grams (2 pounds, 5.2 ounces) today. That represents a 15 gram gain from yesterday, which is considered "healthy" by the nutritionist. We were told that a good daily weight gain is 15 - 20 grams per kilo of body weight, and she's only 1 kilo right now. Her meals have not changed - 19 ml of fortified milk with MCT oil. She has been tolerating the feedings amazingly well. Once she's off CPAP, even if she still has a nasal cannula, she can try to eat from a bottle. That's something to look forward to.

The nurses got the results of Andrea's thyroid follow up, and the endocrinologist has decided to not treat her condition right now. The recommendation was to repeat the test again on Friday, 4/24. We have faith that the doctors are looking at all the options and making the best decisions for Andrea. At least her thyroid is functioning - they just need to figure out why the other hormone is being generated. In the more good news department, the nurses had to take 4 ml of blood for these tests, and yet Andrea did not need a transfusion. Her last transfusion was April 4. It is a relief to see that her bone marrow is starting to do its job and is making more blood.

I spent about an hour holding Andrea today, and she was wide awake for a big chunk of the time. It was amazing to hold her and see her looking around. We're told that right now, she sees very little. We are mostly large, blurry shapes, so I don't delude myself that she's watching me. Still, when I was holding her, she would look up toward me, them move her eyes around, as if scoping out her environment. During our kangaroo time, Andrea was more mobile than usual, too. She kept trying to move her head, and at times, seemed to be trying to climb up my body. It's hard to hold her, because there are so many wires and tubes of which to be aware. Also, unlike holding a full term baby, I can't easily shift positions, or move her around. When she cries, there's not a lot of ways to comfort her. She is learning to use a pacifier and will occasionally try to suck her thumb. Fortunately, she is able to comfort herself fairly quickly, at least when we're cuddling.

Thank you for ongoing prayers for Andrea. She is our miracle baby!

“Be faithful in small things because it is in them that your strength lies.”
Mother Teresa of Calcutta

Friday, April 17, 2009

Steady Progress

Andrea really is starting to look like a real baby, with small areas of chubbiness developing. She has actual calf muscles now, and we can't see her bones anymore! She lost 5 grams between yesterday and today, which is so insignificant as to be almost not worth mentioning.

The big concern for right now is Andrea's thyroid. All newborn babies are screened at birth for a host of problems. (I think I mentioned this before - sorry!) Andrea tested positive for hypothyroidism. Her repeat tests have been inconclusive - some hormone level is normal, the other is elevated. The doctor explained today that it's puzzling that the results are not consistent. He also said that the research on treatment is not conclusive. Some studies show that treatment in preemies helps, while other studies suggest that treatment can harm the babies. So, we have an endocrinologist monitoring Andrea, and we have to have to have faith that the doctors will do what's best for her.

Andrea has adjusted well to being kangarooed, and I think she's learning to anticipate it. Today, she was wide awake when we got there... Normally when she's taken out of the isolette, she cries, or at least kicks up a fuss. Today, there was one tiny whimper, and as soon as she was on my skin, she stopped fussing and went to sleep. The nurse removed the CPAP sponges while I was holding her, to give Andrea's poor head a break. Andrea tolerated the holding incredibly well - I had her out an hour and a half. I finally had to put her back, not because of problems with Andrea, but because my butt had fallen asleep from sitting in the same position so long. Parts of my body get numb because I really can't move very much.
Andrea's feedings are now 19 ml of fortified milk every three hours, and she adjusted well to the reduced CPAP pressure of 6. She'll stay at 6 for a few days to see how she tolerates it, and will then be moved to 5. Once she's successful at 5, the doctors can try just a plain oxygen nasal cannula, which is taped to her cheeks, instead of having all that pressure on her skull.

Many of our followers have been emailing me questions. Feel free to post questions as comments to the blog. I read all the comments, and I'll answer questions here. That way, I won't have to answer the same question multiple times. I'm just trying to avoid duplication of effort.

Thank you to everyone who gave us baby blankets. We'd gotten a few for Christmas, and more have come as baby gifts. Even though Andrea is not with us yet, the hospital has been making use of the blankets. We got a beautiful fleecy blanket that is used as her isolette cover to keep the sun out and allow Andrea to have quiet, which helps keep her calm. (Sort of like covering a bird cage, actually!) The more traditional flannel "receiving blankets" are used as coverings for the isolette mattress, and also rolled up to make Andrea's "nest". It makes us feel good to see Andrea surrounded by these things. It is a constant reminder of all who care about her and are praying for her to get well.
On that note, thank you too, for the ongoing prayers. We ask that you pray for a successful resolution to Andrea's thyroid issue. For me, the most worrisome part is that there is no clear cut cause or solution. We can only pray that all continues to go well, and that the doctors can get this piece of Andrea's recovery straightened out.

"God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain”
C.S. Lewis

Thursday, April 16, 2009

7 Weeks Today!

As of 5:29 this evening, Andrea is celebrating 7 weeks of life. She is one of the longer-term residents of the NICU right now, and as a result, I'm one of the more experienced parents hanging around. I'm picking up the language and the pattern of NICU, and I know which alarms to worry about, and which to ignore. I'm more confident to step in when something needs to be done - I regularly change Andrea when I'm there, among other things.

One thing that I find interesting is to be in NICU when the doctors come on rounds. I have learned a lot, not only about Andrea and her progress, but medicine in general. I have been paying closer attention during rounds, and have noticed that there is a pattern to the reporting. There is a doctor in charge, and a fellow directly under him. Additionally, there is a collection of residents, interns and medical students who are routinely grilled during rounds. Every day, the reporting begins with either the fellow or a resident reciting Andrea's history for the company at large, and I like the language they use. It begins with the introduction of "Baby Zimmerman, x-26 weeks (born at 26 weeks gestation), today is day 49 (or whatever) of life." I love that every day of Andrea's life is acknowledged in NICU - and today IS day 49 of life. Thank you God! From there, the resident reports on Andrea's medical condition and decisions are made about changes in her care. Here are the changes made today.

Yesterday, I reported on Andrea's unusual weight gain from Tuesday to Wednesday. (100 grams) Everyone, including her nurses, expected Andrea to drop some weight between yesterday and today. Well, Andrea is nothing if not fickle - she GAINED 40 grams, now weighing 1045 grams (2 pounds, 4.9 ounces). Because she's gained so much weight, her food has been increased again to 19 ml of fortified milk every three hours. The pressure on her CPAP has been decreased to 6, hopefully working toward removal of CPAP in the not too distant future. Yesterday at noon was her last dose of caffeine. It'll take 5 or 6 days before we know if she needs to have it back again. Caffeine reduces apnea episodes. So far, Andrea has had none, even though they never increased the caffeine dosages as she grew.

Andrea has made amazing progress over the past 7 weeks. We are grateful to all for the prayers and support. Please continue to keep Andrea in your prayers.

“Faith is deliberate confidence in the character of God whose ways you may not understand at the time.”
Oswald Chambers

Wednesday, April 15, 2009

One Kilogram!

At her weigh in today, Andrea was a whopping 1005 grams! (Barely more than a kilogram, or 2 pounds, 3.5 ounces) This represents a 100 gram weight gain from yesterday. Andrea has never gained this much weight in one day before, but she has had relatively big weight gains (for her size, of course). Generally, her pattern after a big gain is to drop a bit the next day, but she always comes back. Plus, we believe that crossing the 1,000 gram mark for the first time is cause for celebration! Nevertheless, we will not be surprised if she's smaller tomorrow. We learned today that Andrea can be moved to a crib when she weighs 1,800 grams. Now that we're on the up side of 1,000, that doesn't seem like such an unattainable goal.

In light of her new, larger size, Andrea's food has been increased to 18 ml every three hours, complete with all the fortifications. Additionally, since she has had no apnea episodes at all since birth, her caffeine has been eliminated starting tomorrow. It will take a few days for all of it to leave her system (as anyone who has gone through caffeine withdrawal can attest) and then she'll be watched closely. If she begins to have apnea, the caffeine will be reintroduced.

Andrea had a follow up eye exam to the initial exam of two weeks ago. While eye problems have not been conclusively ruled out, she is scheduled for a recheck in another two weeks. As I mentioned previously, when the doctors suspect a serious problem, rechecks happen weekly. So we see this as a good sign. On Friday, Andrea will have a thyroid test done. The State of NJ routinely tests newborn babies for a host of congenital problems, and Andrea tested positive for hypothyroidism. However, chances are that this result is caused by Andrea's extreme prematurity, not a real thyroid problem. Still, she is being followed by an endocrinologist until she no longer tests positive for the condition, or until it is determined that she really does have a problem.

Andrea continues to progress slowly and steadily. Please continue to remember her in your prayers.

“Faith is the substance of things hoped for, the evidence of things not seen. (Hebrews 11:1)”

Tuesday, April 14, 2009

Keeping us on our Toes

Finally, after three long days, I was able to hold Andrea again. No one told me not to over the weekend, but she was having so much trouble maintaining good oxygen saturation, I was reluctant to stares her out. She was much better today, so we got to spend an hour together. Normally I sing, but Mom and Dad are back from their cruise, and they came to see her today. We visited together while Andrea and I kangarooed.
The biggest change in Andrea's life today was a switch to a larger CPAP tube. Her nose has grown (any growth is a good thing for Andrea) and the old tube was too small. A respiratory therapist came this morning and measured Andrea's nose to determine if she needed a bigger size. He used a tool like a spark plug gapper, and Andrea was NOT happy to be disturbed. She kept trying to push his hands away, and was crying with all her might. (Which, granted, is not very much!) Once she got the new tube, Andrea had a better day with her saturation levels. She was at 26% oxygen for most of my visit, which is pretty good. She is a fickle child, and has now decided that she LIKES to be on her back, after several weeks of making sure the nurses NEVER put her on her back.
Tomorrow, Andrea is going to be examined again by an opthamologist. There are some eye problems that are common in preemies, and the sooner they are discovered, the more easily they are corrected. She had an initial exam two weeks ago, which was inconclusive. The doctor was not sure if the irregularities on Andrea's retnea was because there is a problem, or because she is so small. This exam tomorrow is a follow up to try to determine the state of her eyes. She will probably have additional eye exams between now and discharge.
Andrea is still on full feeds of 17 ml of milk, with all the previously noted additives. She lost 15 grams between yesterday and today, but the doctors are not overly concerned. A loss from day to day is not uncommon, as long as she is generally gaining. It seems to be Andrea's pattern that if she has a big weight gain one day, the next she will lose a little. I no longer get overly worried about that.
Thank you for the ongoing prayers and support. We would be lost without our families and friends. Please continue to pray for Andrea.
"Never, never, never, never give up."
Winston Churchill

Monday, April 13, 2009

A Better Day

We are pleased to report a better day for Andrea than yesterday. Interestingly enough, so far she has not needed another blood transfusion. We were convinced that she was going to have one today, based on her erratic oxygen levels on Sunday. However, when we spoke to Andrea's nurse last night, it seems that Andrea was just being difficult. She was facing out the window (overlooking Rutgers football stadium) and she really doesn't like being on that side. Once the nurse repositioned her to fact into the room (on her left side) her oxygen levels came back up and were much more steady.

Andrea gained anther 10 grams, now weighing 920 g, (2 pounds, 0.45 ounces). She is still 13 inches long, so she looks more baby-like. She has flesh covering her body, and her cheeks are almost chubby. Her milk, still fortified with extra calories and MCT oil, has been increased to 17 ml every three hours, beginning today. Her CPAP pressure is remaining at 7 for now.

When I spoke with the doctor during rounds, she gave me some of the long range goals. If Andrea can get down to a CPAP level of 5 and still be well-oxygenated, the staff can replace CPAP with a much thinner nasal cannula. It would serve a similar purpose, but won't be so annoying to Andrea, and would be easier on her skull bones. This is probably a few weeks down the road. Changes are made slowly, to avoid having to go backwards.

The doctor today expressed pleasure in how Andrea is progressing. In her words "We don't always have successful outcomes". Even though we are nowhere near the end of this odyssey, we have to acknowledge that Andrea's progress has been unusually positive so far. More than one person in NICU has commented on it. Her success is due to all of you who are reading this blog and praying for her. Thank you for your support, and for spreading the word to the corners of the world. We know it's been a long haul already, but we're asking for continued prayers as Andrea continues to develop.

Everything that is done in the world is done by hope.

Martin Luther

Sunday, April 12, 2009

Twice the Andrea

Well, she did it, at least for the moment. Andrea weighs 910 grams, or 2 pounds, .1 ounce. She has officially doubled her birth weight! On top of that, she broke the two pound mark, although just barely. It is not uncommon for Andrea to have a down day with her weight, especially after a big gain, so we have to see how long this lasts. She does seem to keep making two steps forward and one step back, so at least the losses are quickly regained.

We went to see Andrea for Easter, and she is still holding her own. She is having a difficult day today, with a lot of trouble maintaining appropriate oxygen saturation levels. While we were there, the nurse increased oxygen support more than once. Andrea is looking pale, and is not really herself. Her nurse commented that she is lethargic, and not her feisty self. Ken and I are predicting that she'll need a blood transfusion in the next day or so. Her blood is tested Monday mornings, so the nurse said they're trying to wait until then to make a decision. Then they won't have to stick her more than once. Of course, if her progress gets worse, they'll make a decision tonight.

There was very little we could bring Andrea for Easter. She can't wear clothes yet, and she lives on milk and vitamins. Even her hats need to be a certain type to protect her head and keep her warm. You can see her Easter present in the top right corner of the isolette - she has a little chick keeping her company. We also brought some bedding for her - a collection of blankets and some washcloths, which are used to position her head and body. The hospital issue ones are fine, but of very coarse fabric. Now she'll be a little spoiled.

I'm feeling a little drained today. Trying to pull off Easter for the boys on top of everything else was exhausting. Fortunately, the Easter Bunny arrived as expected, so no one was disappointed. Please continue to pray for Andrea. She is doing well, but days like today are scary, when we see how quickly she can start to struggle. She's still so small, especially when we consider that she is a 32 week baby now. She needs to continue to grow and get stronger, and the prayers do make a difference.

“When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly”
Patrick Overton

Saturday, April 11, 2009

Keep Moving Forward

Life remained the same for Andrea since yesterday. In the good news department, she gained back most of the weight she lost, getting back up to 860 grams (1 pound, 14.3 ounces). She is managing to completely digest her meals of 16 ml of milk, so hopefully the doctors will be able to increase the amount sometime soon. We have to get those calories into her however possible.

Andrea continued to be fairly steady on her CPAP at level 7. The nurses have to adjust her oxygen periodically throughout the day. Depending on her position, she needs varying amounts of oxygen support. While visiting today, Andrea was on her back, a position the generally requires higher support than when she's on her stomach.

Many people have asked what Andrea needs to weigh in order to come home. While it's true that in the past babies had to hit a 5 pound mark, that is no longer the case. Andrea doesn't have a minimum weight she needs to achieve. Her discharge will be based on her reaching other milestones. The big one is breathing, of course. She needs to be able to breathe on her own with no oxygen support. She has a way to go before that's a reality. Another one we haven't discussed before is her ability to regulate her body temperature. Right now, Andrea cannot maintain 98.6 degrees. She cannot survive outside her isolette, which functions as an incubator, in addition to everything else it does. Obviously, we can't take Andrea home at 2 pounds, but she may be as small as 4. One nurse told us to assume she'll come home under weight. I write frequently about the need for Andrea to gain weight, not because she needs to achieve a certain size, but because bigger lungs allow for more oxygen in her body, and bigger lungs only come with a bigger Andrea.

Thank you for your prayers. We pray for Andrea to get bigger, so she can work toward the milestones I mentioned above. Please continue to remember Andrea and pray that she "keeps moving forward". (Meet the Robinsons, Walt Disney)

My Aunt Peggy sent me this quote today (emphasis from Aunt Peggy): "COURAGE ISN'T ALWAYS IN A LION'S ROAR .. IT IS SOMETIMES THE HEART AT THE END OF A DAY SAYING 'I WILL TRY AGAIN TOMORROW'". What is most amazing about this quote is that ever since I started writing it, I have been collecting quotes on-line for inclusion in the blog, and about 3 weeks ago, I found this one: "Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow." Mary Annne Radmacher. We pray that God continues to give us courage and strength.

"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow."

Mary Annne Radmacher

Friday, April 10, 2009


Andrea has gained enough weight that she is no longer the smallest baby in NICU. However, she has a reputation because she was so small at birth, and has collected a variety of nicknames. Today, I met a new nurse who affectionately refers to Andrea as "Thumbelina", which seems appropriate. She's barely two hands full.

The only change for Andrea in the past 24 hours was a decrease in the amount of pressure used in the CPAP. She's gone from 8 to 7. She still needs between 25% and 35% oxygen support, slightly more when we're kangarooing or when she's on her back in the isolette. We hope to see that improve as she grows and her lungs get stronger.

Andrea lost a little weight between yesterday and today. We have to keep looking at weeks, rather than days, because the downs can be discouraging. We're so close to the 900 gram mark - I think we'll feel elated when Andrea has finally doubled her birth weight.

Andrea continues to get the same feedings; 16 ml of fortified milk, now with the MCT oil. She has grown enough that she's moved up to Pampers Preemie sized diapers (she used to wear "pre-preemie" diapers), and the #2 size blood pressure cuff. The #1 size was about as big as a standard size "Band-Aid".

I got to hold Andrea today, and while it is wonderful to have her in my arms, it is also a scary experience. She usually needs more oxygen when I'm holding her, and there is the constant worry that she's not getting everything she needs while out of the isolette. For some reason today, she seemed to have more trouble with her oxygen than usually, frequently setting off the "desat" alarm. I know the nurse is watching, and I shouldn't worry, but I can't help it. It serves as a reminder, too, that despite her good progress so far, she still has a long way to go, and so much can go wrong in the meantime.

We are more than six weeks into this experience, and are drained to the bones. We are so lucky, because it could have been so much worse, but it's still exhausting. Thank you for all the support, both material and emotional. We really have to live day by day, because to think of the long term is so overwhelming. We are probably about one third of the way through the process. While most preemies come home fairly close to their due dates, Andrea will likely be delayed because she started so far behind.

Please continue praying for Andrea, and for us. Every day puts us closer to a happy ending.

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

Thursday, April 9, 2009

Saying Hello

In honor of her 6-week birthday, Andrea decides to wave hello today. I thought this picture was great - I couldn't resist including it.

So, you read right in the picture caption. As of 5:29 p.m., Andrea is celebrating six weeks of life, Thanks be to God. I spent some time with her today, and she is continuing on her slow but steady progress. She now weighs 865 grams, or 1 pound, 14.5 ounces. We will rejoice anew when she passes the two pound mark. She managed well with her altered feedings last night; the fortified milk with MCT oil. The doctors decided to increase the quantity of milk further, to 16 ml every three hours. I believe the plan is to continue to push the limits of Andrea's stomach in the quest to get more calories into her.

Also discussed today was the possibility of reducing the pressure level on the CPAP. Right now, Andrea is at 8, which is the maximum. As they evaluate her functioning, it is necessary to see how Andrea manages with less help, so the doctors can determine when she's ready for the next steps. I believe the CPAP will be reduced to 7, and the doctors will run blood gases to see if Andrea has any ill effects.

I was able to hold Andrea for over an hour today. She was quite content, tucked inside my shirt, and we rocked while I sang to her, which has become our routine. The nurse returns Andrea to the isolette when the monitors start to indicate that she's having trouble. Usually, her oxygen level starts to get too low (called desat). When Andrea is returned to the isolette, she is on her back for a few minutes while the nurse adjusts the CPAP and makes sure all the sensors are positioned properly. Normally, she HATES being on her back, and requires more oxygen and generally kicks up a fuss. Despite that, it's amazing to watch Andrea during these times. She hates the CPAP so much that you can see her visibly relax when the nurse removes it in order to reposition the sponges. Of course, she also turns purple fairly quickly without the support. The nurse watches her oxygen level carefully and gives her a safe break. The interesting thing is to watch Andrea when the nurse tries to reinsert the CPAP. Immediately she cries and pushes the nurse's hand away.

Please join us in celebration of today's milestone. We continue to thank God for our good fortune and Andrea's continued recovery. We ask that you continue to pray for her, that the progress continues to be smooth.

Let us thank God for his priceless gift!— 2 Corinthians 9.15

Wednesday, April 8, 2009

Even More Calories

The biggest news in Andrea's life today is that she needs EVEN MORE calories than she's able to get in the current feedings. The amount of milk has been increased to 15.5 ml every three hours. In addition to the milk fortifier and powdered formula that have been added for a while, she is also getting MCT oil. MCT stands for "medium chain triglycerides", which are fatty acids. This is another attempt to get more calories into Andrea in the same amount of food. I read about MCTs (Got to love the Internet) and learned that they are more easily and rapidly digested than other types of fats. I'm guessing that means that more of the calories actually stay in Andrea, instead of being burned off.

Andrea now weighs 825 grams, or 1 pound, 13.1 ounces. We're closing in on two big milestones; 900 grams which will represent double Andrea's birth weight, and 1,000 grams, which will be 1 kilogram. Hopefully, she'll be able to gain some weight faster with the new feeding regime.

Andrea continues to do well with CPAP. They're using a new machine for the delivery now - it's called 'bubble CPAP" because Andrea will generate bubbles in a beaker of water on the machine when she's breathing properly (with her mouth closed). The only reason for this change was that another baby needed the ventilator Andrea had been using, and she didn't. It is a relief to see Andrea moving on to next steps, even though she's moving slowly.

Thank you for positive thoughts, good wishes and prayers. Tomorrow will mark Andrea's 6-week birthday. You have all played a part in bringing her so far.

"Never be afraid to trust an unknown future to a known God. "
Corrie Ten Boom

Tuesday, April 7, 2009

Bossy Andrea

I forgot to bring my camera, so there is no new picture today. Sorry! I'll try to remember tomorrow.

Andrea is doing well, and obviously feeling very smug with herself. I was able to hold her today, and had her out of the isolette for almost an hour. However, I almost gave up after five minutes, because Andrea was delighting in causing problems. Right after we got settled, she yanked the CPAP tube out of her nose and relocated it so that one cannula was in her nostril and the other was blowing air on her eye. Since I need both hands to support Andrea, the nurse had to come and reposition the thing. No sooner had the nurse walked away and cleaned her hands than Andrea yanked the tube out again. She repeated this at least five times before getting bored and deciding to behave. I told the nurse that if this had been my first experience with Kangaroo Care, I wouldn't be anxious to try it again! Once she settled down, Andrea and I had a pleasant hour of rocking and singing.

Andrea had a good night on the new breathing program. She maintained good oxygen saturation all night, with no supporting breaths, just the straight CPAP. During the day today, she was actually on lower oxygen levels, averaging 26%, which is down from 30% yesterday. I've mentioned before that Andrea hates to be positioned on her back, and it's interesting to note that she needs more oxygen when on her back. She likes to control the situation more than you'd expect from a tiny baby.

Andrea continues to be on "full feedings". She's getting 15 ml of milk, fortified with extra calories. Now that she's breathing more on her own, she's burning more calories. We're fortunate that she tolerates food so well. Her stomach is too small to hold more milk, but at least she's getting as much as she possibly can.

I saw the doctor today for yet another follow up appointment to my icky wound. I am happy to say that it is continuing to heal well. The visiting nurse no longer comes - Ken has been packing the wound since Saturday and it seems to be doing fine. Still, the doctor is estimating another 2 weeks before it's finally in the past.

We're happy so many people are following Andrea's story and praying for her. We are closing in on 6 weeks, or 32 weeks gestation. Despite her small size, Andrea is doing remarkably well. Thank you for the prayers that have made that possible. Please keep them coming for her and us.

"Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”
Thich Nhat Hanh

Monday, April 6, 2009

Andrea's Pretty Face

You'll notice in today's picture that I was able to photograph Andrea without any breathing tube in place. I've mentioned before that she is removed from breathing support every three hours for her assessments. During one assessment today, I was able to get this picture. We think she looks surprised.

The biggest change for Andrea today was the removal of the support breaths from the nasal IMV. She is now on CPAP (for real, as opposed to when I was misusing the term) which just provides pressurized air. All the breathing is Andrea herself. After an hour of no supporting breaths, the nurse ran a blood gas, and it showed that Andrea is getting enough oxygen without the help. So for now, she'll remain on CPAP and see how things go. Her levelof oxygen support is 30% most of the time. When she gets to 21%, they can consider removing CPAP, since 21% oxygen is the same as breathing room air. When Andrea is assessed, she is given the chance to breath unassisted. Her nurse uses that time to see how she is progressing toward removal of the support. Right now, when she breaths unassisted, we can see how much she has to struggle.

Now that Andrea is breathing on her own, more or less, she is likely to lose a bit more weight, since she's burning more calories just breathing. I wish I breathed more calories by breathing! She is still getting 15 ml of milk with extra calories. Also interesting is that she still gets caffeine, which helps prevent apnea episodes. Despite the fact that she's gained more than 300 grams since birth, she's still on the same level of caffeine, and has not had any apnea episodes. That speaks well to the state of her lungs.

Thank you for continued support and prayers. We are closing in on 6 weeks of life on the outside, and Andrea continues to move forward at her own pace. Please continue to keep her in your prayers.

“There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever”
Mahatma Gandhi

Sunday, April 5, 2009

Mellow Andrea

I can't believe I'm saying this, but Andrea had yet another uneventful day. We made a point of going to church before seeing her today, so we could bring palms for her isolette, so it was pretty late in the day before we got to New Brunswick. To avoid any chance of infection, I made a cross from the palms (as I learned to do from my Grandpa Andy) and Andrea's nurse taped it to the outside of the isolette, instead of inside. Better safe than sorry.

Nothing has changed in Andrea's world since yesterday. She did well with the blood transfusion, and seemed happy to have the IVs out again. Her food is staying at the same 15 ml, complete with all the caloric additives. Her breathing is good with the nasal IMV. Andrea is assessed every three hours, before her feedings. During those assessments, she is removed from the nasal IMV and is breathing on her own. She is also disconnected when being moved from the isolette to me for kangaroo care and when she's returned afterwards. I have to say, she seems to have less trouble breathing on her own during these times than she originally did on nasal IMV. I think her lungs are gradually growing bigger and stronger.

During kangaroo care today, Andrea was unusually alert for the first five minutes or so. I hold her pretty high up my body, so I can't see her face, but the nurse told me her eyes were wide open for some time. I rocked her and sang, as usual, which makes me happy and is supposed to help her. I wonder if she'll remember these songs as she gets older. I always sing "All Things Bright and Beautiful" - I think she'll be in church some day and wonder why the song sounds so familiar. By the third or fourth song, Andrea had fallen asleep, and I could feel her tiny body moving as she breathed.
Andrea has strong ideas about how she likes to be placed in the isolette. The nurses need to move her every three hours so she doesn't get bed sores or develop other problems. Her position of choice is on her belly. She'll tolerate being placed in her left side, is less thrilled to be on her right side, and HATES to be on her back. After I held her today, she must have been really mellow going back into the isolette. As you can see in today's picture, she seems incredibly relaxed. We rarely see her looking like this when she's on her back. I like to think I can take credit for her attitude!

Since it's Sunday, Andrea will be measured tonight. I'll find out tomorrow whether or not she's added any more length to her tiny self. She's approaching 32 weeks - she has a lot of growing to do in the next nine weeks or so! The nurses tell us that the least important factor in deciding when to send her home is her weight. There are other milestones she needs to reach with her breathing, eating , digestion, etc. When she meets all of those, she can be considered for discharge, even if she's still a little on the small side.

We said special prayers for Andrea today, and ask that you continue to pray for her as well. We can't wait for her to come home and meet all the people who have been so instrumental in her well-being.

“Keep your dreams alive. Understand to achieve anything requires faith and belief in yourself, vision, hard work, determination, and dedication. Remember all things are possible for those who believe.”
Gail Devers

Saturday, April 4, 2009

A Quick Update

I'm too tired for words right now, but I know many of you will worry if there's no post tonight, so I'm going to throw together the highlights of today's visit.

Andrea had another blood transfusion today. While it is always hard to see her getting blood, this is the first time in over a week she's needed it. According to the nurse, Andrea's blood counts weren't bad, but they weren't great, so they decided to build her up a bit. She gets no milk during the 4 hour transfusion, or for 2 hours before and 2 hours after so she also has an IV in again for nutrition. As a result, she had ports in both hands, which is sad to see.

When she does eat today, it'll be a repeat of yesterday - 15 ml of milk along with the fortifier and the powdered formula. It's obviously working - today Andrea weighed 805 grams, or 1 pound, 12.4 ounces. She's gaining weight, moving forward at her own pace.

Even with the transfusion, I was able to hold Andrea for almost an hour today. She is getting used to being out of the isolette and is quite wonderful to hold. She's so small, it's like holding air, but her little body feels so sweet. It's hard to resist the urge to kiss her, but I worry about introducing germs that she'd have to fight, so I do resist. Ken is still sick, so while he visited with Andrea, he decided against any contact, to avoid making her ill, too.

I promise to write more tomorrow, and I'll post more pictures. In the meantime, thank you for continued prayers. They help more than we can express, and we can see the benefit every day when we visit Andrea.

"I am thankful to God from whom all blessings flow, and to my family and friends who enrich my life. "
Author Unknown, from May This Encourage You, Always

Friday, April 3, 2009

Daddy's Little Girl

Ken took a half day from work today, and we went together to see Andrea. It's actually the first time we went together since I was discharged from the hospital after her birth. Unfortunately, Ken is fighting a cold, so he didn't get want to get too close. Still, I got this picture of him - the first of Daddy and Daughter.I was able to hold Andrea again - Kangaroo Care will be a daily occurrence unless she is getting a transfusion or something else prevents her from leaving the isolette.

Today was another upbeat, positive day in Andrea's life. Her food level has been increased to 15 ml (or a full tablespoon!) at each feeding. Since she started getting milk, the nurses have been fortifying her food with something called "human milk fortifier", which makes the milk more caloric. Today, they started adding some powdered baby formula to the milk, in addition to the fortifier, all with the goal of making her milk more fattening. I'm so jealous - I wish my only purpose in life was to gain as much weight as possible in the shortest possible time! Andrea adjusted well to the decreased support from her Nasal IMV, and she gained another 10 grams. She's now 780 grams, or 1 pound, 11.5 ounces.

Once the nurse returned Andrea to her isolette, we were treated to the most animated baby we've seen yet. Andrea was on her back, and quite alert. The nurse left the top of the isolette open, so we were able to interact with her in a less restrictive way. Andrea was awake and very active - waving her arms and legs and making faces. We wonder what she's thinking when she looks around... how strange this environment is for her, compared to where she should be right now.

We saw Andrea's doctor again today, and he repeated his comments of the past few days. She is doing well, and they're going to continue to support her lungs while allowing her to grow as fast as possible. I know everyone thinks their baby is special (and they all are, of course) but right now, Andrea seems to be the darling of NICU. So many people have been, and will continue to be, involved in her care, and they all comment on how cute she is, and what a feisty baby she is. Some of the staff who saw her at delivery cannot believe how far she's come in 5 weeks. She's still really small for a 31 week baby, but she'll get to the finish line in her own time.

Just a note to those of you following the blog who live locally. We are happy to have visitors come to NICU to see Andrea. If you want to visit, just email us and we'll set up a date (children are not allowed in NICU). Unfortunately, Andrea is going to be there for several more weeks. We're making the best of the situation.

Thank you to all who continue to support us through your words and actions. The gifts of meals and play dates have made life infinitely easier for us. We strive to remain upbeat and positive, as negativity will help no one. You enable us to stay strong, since we have so many people behind us. Please keep praying for our baby.

"A friend is one who strengthens you with prayers, blesses you with love and encourages you with hope."

Thursday, April 2, 2009

At Last

I have to indulge myself with two pictures. I was able to Kangaroo with Andrea for a whole hour today, and her nurse was kind enough to take some snapshots.

As of 5:29 this evening, Andrea is celebrating 5 weeks of life. We mark this milestone with joy and a sense of thankfulness, relieved that Andrea continues to have relatively uneventful progress in NICU.

Andrea did very well for the hour of Kangaroo Care today. Her vital signs remained relatively steady and her oxygen only needed to be slightly increased. The most surprising thing I learned today was that Andrea can finally cry! When the nurse moved her out of the isolette and into my arms, Andrea was not happy to be disturbed from her little nest. As she was placed in my arms, she started crying a true baby cry, not the little squeaks I heard yesterday. Considering she is so tiny, she got a decent volume out of her lungs. It was hard not to laugh at the sound. I'm sure the day will come that I wish for Andrea to stop crying, but today, it was music to my ears. TO my immense delight, some rocking and singing soothed her, and Andrea settled into sleep on my chest, but not before yanking the CPAP tube out of her nose and dislodging the prongs completely.

I learned today that I have been incorrectly referring to Andrea's breathing support as CPAP. The neonatologist informed me that it's actually called Nasal IMV. A nurse later explained that it's the same thing, but Nasal IMV is the newer, and more correct, term. Since I strive for perfection in all things, I will stop calling Andrea's breathing support CPAP and start using Nasal IMV. So, speaking of her Nasal IMV, the doctors decided today to reduce the amount of support that Andrea receives. She still gets her air under pressure, but now the system is delivering fewer breaths for her, allowing her to breath more on her own. The nurses will test her blood to make sure she's still getting enough oxygen without the higher level of support.

Since one of the goals of NICU remains trying to get Andrea to grow, her milk level is being increased again. Her feedings today are 14 ml every three hours, plus the vitamins and extra calorie supplements. One more ml, and she'll be getting a whole tablespoon every feeding. Her weight today was 770 grams, or 1 pound, 11.16 ounces. She is slowly closing in on the two pound mark. I think we'll rejoice when she hits 900 grams, which will be double her birth weight.

Thank you for the prayers that have brought Andrea to her 5 week birthday. We ask for continued prayers that she remains strong and progresses well.

"Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver." Barbara De Angelis

Wednesday, April 1, 2009

Kangaroo Care

Today was a momentous day... for the first time, I was able to actually hold Andrea, cuddling her to my chest. Most parents do not have to wait almost five weeks for the simple pleasure of cradling their babies. It's hard to believe, but Andrea will be five weeks old tomorrow.

I was able to participate in what is called Kangaroo Care. Andrea was placed against my upper chest, skin to skin and covered with a blanket. Unfortunately, ALL the batteries I brought with my camera today were dead, so there is no picture, but we plan to continue this every day, so tomorrow will be better. I bought new batteries, LOL! We have noticed Andrea growing, both in weight and length, but holding her today, it seemed like she's as small as she ever was! Both my hands almost completely covered her body. She still has her CPAP tube in, so one hand had to hold her head up, or the weight of the tube would have pulled her over. My other hand was over her bottom half, leaving her arms free. She kept tickling me at the base of my neck, which was one of the nicest things I've felt in a long time. As new as these sensations were for me today, it was also a whole new experience for Andrea. I'm certainly more padded than the mattress in her isolette!

I was able to hold Andrea for about half an hour before she started to get too cold. Part of the problem with very young preemies is that they can't regulate their body temperatures. Even though she was against my skin, inside my shirt and under a blanket, I couldn't keep her at 98.6 degrees. When she started cooling off too much, her nurse had to return her to the isolette. I spent my time with Andrea singing again, mostly repeats of the songs from yesterday, and I recited some of Kenny's favorite childhood stories as well. There were some books he loved so much, I committed them to memory. Today, it was "The Napping House". Andrea still doesn't cry, but while I was holding her, she made the first sounds I've heard from her. I can only compare them to the sounds Kenny's hamster makes... they sounded more like squeaks than anything else. I was impressed to hear anything. She lacks a big set of lungs, and getting enough oxygen is still a challenge for her.

Since today is the first of the month, a new rotation of doctors came into NICU. I spoke briefly with the doctor in charge, and he was pleased with the progress Andrea has shown so far. The hardest thing about talking to the doctors is that they constantly remind us that things can change in an instant in NICU. Today's doctor made a point of saying that preemies can be unpredictable. We know that we still have weeks and weeks ahead of us before Andrea can come home. Still, we prefer to "accentuate the positive" (a flashback to JPE in college) and not think about the negative possibilities until we have to.

Andrea had her first eye exam early today, and the results showed only minor problems. She will be rechecked in two weeks. Andrea's nurse said that this is fairly typical, and not necessarily an indication of a big problem in the future. We were told to worry when the rechecks are scheduled for one week ahead. Andrea's food has been increased again, to 13.5 ml every three hours. Breathing on her own uses more calories than breathing on the respirator, so they're trying to get more calories into her. She lost a little weight from yesterday, again not enough to be concerned about, but they're trying to fatten her up.

Thank you for your continued prayers and support. We are closing in on another milestone, 5 weeks of life tomorrow. We believe it is the prayers of everyone that have helped Andrea to continue to thrive. Please keep them up!

"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”
Helen Keller