December 1, 2005
I can't believe it's already December. What a year this has been! It's been the worst year of our lives, in many ways, and yet - because we were given Anastasia - the best, too.
Anastasia is up to 9 lbs. 7 oz., if you can believe it. Other than the oxygen cannula on her face, you'd never dream she was an extreme preemie. And now, even the doctors are venturing to say that she might be home in as soon as a week. That said, one doctor also reminded us that because of her chronic lung disease (BDP), Anastasia has about a 50% chance of getting a respiratory infection and going back to the hospital within her first year. So, if we were tempted to be more lax about our girl being in crowds, or around sick people, we now have new resolve to be the germ police :)
December 1 (part II)
Today was a red-letter day for Anastasia. She stayed on room air the entire day; in fact, the nurses got tired of moving her cannula to the bridge of her nose (because she didn't need it), and took it off entirely! She hiccupped, coughed, and had reflux - all things that used to make her need more oxygen, but today didn't bother her really at all. To top it off, she ate all 75 ccs (about 2 1/2 ounces) of her six o'clock feeding...then stayed so awake, her nurse was carrying her around the room to look at things. Anastasia was reaching and grabbing so much, her hands were cold. When I called this evening to see how she was doing, her nurse put the phone to Anastasia's ear. When I talked to her, she babbled back. It all does my heart so much good.
Now it may be that tomorrow she'll need a little help with oxygen, but today helps me to understand that life without all those extra tubes can happen!
In the meantime, I present Anastasia's first photo without any breathing apparatus:
December 2, 2005
Many of you wrote and asked what the tube is that you
see coming from Anastasia's nose in the above photo. I apologize for not
explaining sooner. That is an NG-tube (also called a gavage tube) that's
used to feed Anastasia when she can't take all her milk orally. It goes
straight to her tummy.
And yes, as many of you have asked, we are scared (though very excited!) to bring Anastasia home. I have nightmares about Anastasia not breathing, complete with calls to 911. Part of my preparation for her homecoming is to review infant CPR, post reminder CPR sheets in her bedroom and ours, and make sure all our emergency contact information is handy by each phone. It will help that Anastasia's coming home with an apnea monitor, which will alert us if she stops breathing. Otherwise we would literally be staring at her all day and night - in shifts so one of us could try to sleep!
There is some talk among the doctors that Anastasia might not need oxygen when she comes home. That would be such a blessing - although part of me would think, "Yikes! What if she starts turning blue!" One to two weeks is still what the doctors are saying...Actually, I think it's been about a week since they started talking that way, hasn't it? :) But I do believe Anastasia will be home soon. Her breathing and eating are really coming together.
December 3, 2005
Anastasia has been off oxygen long enough that her primary nurse removed the little band-aid type stickers that held it in place. One more thing off our pretty girl's face!
December 6, 2005
Well, today I signed the paperwork for Anastasia to get her four-month vaccinations. "Now, really," I told the doctor, (mostly) joking. "This is ridiculous!"
Anastasia has been in the NICU for 117 days, and is just under 2 weeks old, corrected age.
I so want to tell the doctors that Anastasia is getting enough food through her bottle, and should come home now. I know, though, that everyone at the NICU wants Anastasia home by Christmas. We just have to be patient and let our girl set her own pace. Today, happily, she took another full bottle! (Only her third time.) We tried a different type of bottle, often used for preemies with reflux; only time will tell if this made the difference, or if we just happened to catch our girl at a "good" feed. Hopefully, this is the beginning of a trend!
Unfortunately, Anastasia's reflux seems worse. She often coughs and wretches right before a feed, soon after she's awakened. This puts a damper on things, making her more apt to fall asleep and not want to eat.
Our girl also had another echocardiogram, to check her heart. All the trouble with breathing can put strain on the hearts of babies with chronic lung disease. But Anastasia's heart looks great. She still has a very small heart murmur (PDA), and she may need a follow up with a cardiologist once she leaves the NICU, but I feel confident her heart will be just fine.
December 8, 2005
The evening of my last post, Anastasia took a total of four full feedings by bottle. Apparently, this special bottle has made all the difference, in part because it doesn't require as strong a suck (and therefore, Anastasia doesn't get as worn out), and perhaps in part because it allows less air to get into her tummy. After that, she only took one additional full feeding, but in general, she's been able to nipple part of her meal, almost every time. We are so pleased with her progress!
Anastasia is also more and more alert, and for longer periods of time. She really enjoys looking around her room and studying new people. This afternoon, she was awake even longer than usual, so I sat her on my lap, facing out, and sang to her. She studied the room and studied me, then gradually fell asleep.
It seems I misunderstood a bit of information about Anastasia's recent echocardiogram. When the doctor spoke of a "small hole," I thought he meant only her PDA. While the PDA is still just a tiny opening, I've since found out that he was also referring to a different hole in her heart, something called a PFO (or patent foramen ovale). I didn't know it, but this is something she's had since birth. Two of her previous echocardiograms had inconclusive results about a PFO, and one old one said there was a very small one. It seems it hasn't closed with time.
As I understand it, a PFO is a flap-opening in the heart that stays open while babies are in utero, but normally closes once a baby is born. Anastasia's PFO won't be treated, unless it becomes clear her health is suffering because of it. In most cases, it is not necessary to treat PFOs. Here's more information about this condition: http://www.mayoclinic.com/print/patent-foramen-ovale/DS00728/DSECTION=all&METHOD=print
I also had a pleasant surprise when I entered Anastasia's room today: Her pulse-ox was gone! The little band-aid like apparatus, covered with foam and attached with a wire to a monitor, checked our girl's blood oxygen level, moment by moment. One more wire "missing" from our baby!
December 11, 2005
Other than the fact that we're waiting (and trying to be patient!) for Anastasia to eat everything from her bottle, there isn't too much to report. She had her four month vaccinations, and was a courageous little soul about them. She's also now 10 lbs. 3 oz.! In fact, a number of nurses have said that they'd never guess she was an extreme preemie; she doesn't have the "tell tale signs" of an oddly shaped head or scrawniness. Quite the opposite, really. She looks pink and cubby and round...just like an infant should. And slowly, slowly, she's making progress eating from her bottle.
December 13, 2005
Anastasia has another eye exam this afternoon; we're praying that her eyes are healing, and that she'll handle the stress of the exam well. I'll post an update as soon as I know the results of the test, and can get home to my computer.
December 13 (part II)
This is not the news we'd hoped for.
This afternoon, the ophthalmologist who usually sees Anastasia did another eye exam. I was chit-chatting with one of the hospital's chaplains at the time, telling her I really believed Anastasia's eyes would be just fine. But when the exam was over, the doctor said he thought our girl needed surgery. The ROP wasn't going away as he thought it should, and he felt it would be good to just zap the stuff with a laser now, and not have to worry about it again. That said, he wanted another doctor to see Anastasia, to give a second opinion.
To my surprise, the second ophthalmologist saw Anastasia later in the day. Once again, her eyes had to be dilated.
I always stand in the hallway when our girl has these exams, because they are horrible to watch. This time, I had my hubby with me; he left work early so he could hear the second opinion for himself and offer an over-wrought mom (that's me) some support. This time, from out in the hallway, we could hear Anastasia screaming. The nurse later told us she started screaming as soon as they put the speculum in her eye. I guess Anastasia was willing to put up with one exam a day...but two was just asking too much.
The nurse was afraid Anastasia would start choking and possibly vomit, but thankfully, she didn't. Afterwards, we went into Anastasia's room to speak with the doctor. I picked up a still upset Anastasia, who almost immediately had a quick brady (where her heart rate plummeted, then came back up). This doctor told us Anastasia has Stage 2 ROP, and that she is borderline for surgery. He suggested we wait a week and do another exam.
After he left, we took turns cuddling our girl, who had another quick Brady, and spent a half hour getting her breathing regular again.
I was a very trying day, for Anastasia - and for her parents.
Please pray that our little girl's eyes will be perfect, and that she won't have to suffer through these medical exams again. It's just heartbreaking. We are also praying that we, as parents, will have the wisdom to make a good decision about whether we should proceed with surgery, or wait...
December 14, 2005
The pendulum has swung. Yesterday, I was taking news of Anastasia's eye exam pretty poorly. It was unexpected to me, as I felt God was telling me Anastasia's ROP would go away. The situation was also becoming the straw that was breaking the camel's back. But today, the latest news confirms my intuition about the situation. The first ophthalmologist has considered the second eye doctor's thoughts, and decided it's safe to wait three weeks, then re-examine Anastasia. When I first heard this, I was frustrated at the sudden change of opinion. But then it occurred to me that the first doc may have forgotten Anastasia's age. ROP has a peak at a certain gestational age, and if Anastasia was looking like she is now at that particular age, they would certainly do surgery, because they'd assume the ROP would only get worse. But Anastasia is well past that point, so the current thinking is that it will probably not get worse.
Still, yesterday was a tough day for our girl. Her eyes were still puffy and red this morning, and she was itching them a lot. She was also pretty cranky, which is quite unlike her. So my dear husband (who'd taken the day off work, thinking that Anastasia might be having surgery today) and I took turns cuddling her. By the end of the day, she looked considerably better.
Oh, and by the way, my little 1 lb. 13 oz. baby is now 10 lbs. 11 oz.!
December 15, 2005
I'm still a little stunned by the reversal from "surgery now" to "wait a few weeks." Some of you have written, suggesting I push for surgery, to be safe. But no surgery is without its risks, and mostly I feel at peace about Anastasia's eyes...just as I felt peace about her when I was pregnant and on bed rest. I have to trust that between two ophthalmologists, Anastasia's eyes are in good hands. I truly do believe that God will take care of this sweet babe.
And so, I'm mostly just waiting for our girl to eat. She's doing better, centimeter by centimeter. I admit I'm getting frustrated, since it seems like the quantities of food she's required to eat are high, compared to her hunger. I've been talking with one of Anastasia's doctors about this, and he tried to encourage me. He said she is, indeed, doing better, and that "she could survive on a desert island on what she's eating now." I chuckled and asked if she needed to take a full 600 ccs a day in order to go home. "It's negotiable," he said. But not negotiable just yet. She's just not yet eating enough on her own to be healthy.
December 18, 2005
Yesterday there was a little Christmas party at the hospital. Cookies and cool drinks were brought in, and then Santa and Mrs. Claus showed up, along with an entourage carrying adorable stuffed animals. We took a family picture with Santa, a volunteer gave Anastasia a Santa-style hat...and our girl slept soundly through it all. Still, we enjoyed sharing this tiny bit of Christmas with Anastasia, and had fun using some of the "baby's first Christmas" things the grandmas had given. One of Anastasia's favorite nurses also gave her a special flannel Christmas blankie that she made.
Now if we can just get her home for the "real deal." It seems unlikely Anastasia will be home for Christmas, but we haven't given up hope. Still, we've made plans for Christmas if she's still in the hospital...
Anastasia's feedings are gradually improving. She's a night owl, however, and always does much better in the wee hours of the morning. Often when I'm at the hospital, she's sound asleep, and therefore doesn't eat as well. Yesterday, for example, I spent 45 minutes trying to wake her up (change of diaper, change of clothes, range of motion exercises, bouncing...), and after about eight minutes of trying to feed her, she gagged and had a quick Brady. You just can't force a baby to eat.
Today, however, was a great day. She downed about 95 ccs for her afternoon meal. I was so excited. Then an hour or less later, she acted hungry again, so I took her to breast. She seemed excited to try breastfeeding again, and we think she took about 5 ccs there, then topped it off with about 25 ccs from her bottle.
My friend Becky requested a new photo with Anastasia and her Beanie Baby. Here she was today:
And, as a reminder, here she was with her Beanie Baby the day she was born:
December 19, 2005
Anastasia has been in the NICU exactly 130 days. Today, one parent asked us, "How do you do it?" I couldn't answer, except to say that you do what you have to do for your child, and that I really don't know how people do it when they don't have Christ to provide them with some peace of mind.
The NICU is certainly a rollercoaster, and today was no exception. After a really great day yesterday (which left the doctor saying Anastasia might be home in a week), our girl didn't do much eating today. She was just plain sleepy and no amount of encouragement from her nurses or me could make her eat.
I also suspected today that her designated "going home outfit" (a cute little furry number, with ears) was getting too small. Sure enough, I wasn't able to zip it up all the way...Well, it's a good thing that she's grown out of it, right?
I thought I'd gotten myself to a place where I wasn't going to be disappointed if she wasn't home by Christmas, but today I learned better. A friend sent us a Christmas card, saying she hoped the note she sent found Anastasia at home. I broke down into tears. Our friend certainly didn't intend that, but after today it seems so unlikely Anastasia will be home soon.
Then I read the next card, from another friend, who said she hoped we'd enjoy our first Christmas with Anastasia. My first thought was: "We're not!" But then I quickly realized, we are. Anastasia is alive. And that is a true miracle.
December 20, 2005
When I walked into the NICU today, one nurse smiled and said, "I hear there's good news on the horizon." She didn't elaborate, but I didn't think it could be the thing I wanted to hear, since Anastasia ate so poorly yesterday. Then I saw Anastasia's nurse, who said, "Have you talked to the doctor yet?" When I told her no, she ran to get him.
And lo! It was what I most wanted to hear! The doctor ordered that Anastasia's feeding tube be removed, and that we feed her only by bottle for two days. Then, he said, barring very poor results, he was sending her home! I was so excited, I gave him a big hug - much to his embarrassment, I think.
It sounds like the general consensus is that her feeding tube is hindering her (I'd been worried that it was causing her to gag and associate bad things with eating; in fact, last night I had a long and crazy dream about getting the tube out of her nose), and that she's at an age where she's going to eat what she's going to eat, and that it's best to have one consistent person (me!) feeding her.
Today, again, she didn't feed exceptionally well, but plans went on to do a car seat test (which ensures she can breathe well while sitting in a car seat), get training in CPR, devise a feeding plan, an RSV shot, etc. In an interesting turn of events, Anastasia had a quick little bit of apnea this morning, which means she'll come home on a home apnea monitor...which we don't mind at all. It will make it much easier for us to sleep at night!
So, hopefully, our Anastasia will be home on Friday - a special day fin our family. It's the fifth anniversary of our engagement. In the meantime, the plan is for me to sleep over at the hospital tomorrow night, so that I can "test" taking care of her on my own.
December 21, 2005
Last night was a whirlwind of last-minute preparations. My mother and I cleaned the house, while my hubby attached the co-sleeper to our bed, and ensured that the car seat fit correctly in our truck (since he hasn't had time to work on the car yet). I've also packed up a very few essentials for my stay overnight and picked a "going home" outfit for Anastasia. Adding to the excitement, the doctor called early this morning to let us know that our girl took all of her "prescribed" food yesterday. Go, baby, go!
December 21 (part II)
I hardly recognized Anastasia today. When I arrived at the NICU, she'd just eaten a large meal, but was crying (yes, crying!) for more! I took her to breast, and she ate pretty well there. When she got frustrated with my slow supply, I gave her another bottle. She was still wide awake, so I put her in the swing. She started to sleep, but was soon ready to eat again. And on and on it went! It wasn't until the afternoon that she really settled down to sleep, and we could do her car seat test. (She passed with flying colors.)
As it turned out, the hospital staff was pressed to find a place for me to room with Anastasia tonight. I overheard them discussing the predicament, and offered to not stay that night. I told them I feel confident about taking Anastasia home. They said that was fine with them, then suggested hubby and I be at the hospital all day tomorrow. They'll set up Anastasia with her home apnea monitor, and we will care for her as if she was at home. Then, the doctor decided, we could take her home that evening.
We are so excited, and not even the CPR drills (complete with dummy babies) could spoil our thrill at being able to take Anastasia home...at long last!
December 22, 2005
Anastasia is home!
We arrived at the NICU at about 9am this morning, expecting to spend the entire afternoon there, and take our girl home in the evening. Instead, we were told, "You've been here 133 days. Go home!" And so we did!
We took pictures and said some tearful goodbyes. When we walked out of the hospital doors, I cried. Finally, at long last, we were taking our baby home!
She woke up about a half hour after we got home, and was very excited by all the new sites in her nursery. She gobbled down a bottle, and then - though she tried to stay awake - she fell asleep. Her daddy is cuddling with her now, and I just finished putting all the things from the hospital away. We are tired, but so relieved.
We are looking forward to a peaceful few days before a quiet Christmas celebration. I know that many of you are looking forward to seeing Anastasia, but please understand, we can't expose her to very many people - for some time yet. I know it seems like forever, already, but her day in the spotlight will come :)
Finally getting her car seat test! (Dec. 21, 2005)
Her official hospital discharge photo.
On our way out the door!
December 23, 2005
Thank you to everyone who wrote to congratulate and give well wishes to our little family. I promise I'll keep making posts :)
Last night was pretty surreal for us. We have Anastasia in a co-sleeper, which is like a mini crib that attaches to our bed. I found myself constantly putting my hand on her chest, to make sure she was breathing...even though she's on an apnea monitor. I wasn't getting any rest at all. Finally, I told myself to trust God, and get some sleep. Still, Anastasia was half-awake off and on all night with a gassy tummy, so I ended up getting about four hours sleep total. Add that to the five hours I got the night before she came home (because I was too excited to sleep) and you get a decent night's rest, I guess. :)
We were concerned all through last night and a lot of today, because our girl ate very little. She just slept and slept and refused the bottle. We were really beginning to wonder if Anastasia was headed back to the hospital.
We felt much better this afternoon, though, when she ate an enormous amount of food. She literally ate from 1:30 to past 5:00 pm today, stopping only for burps. I have no idea where she put all that milk! We were pretty exhausted at the end of her feast. I'm so thankful hubby home with us for a while. I feel much more secure about Anastasia's safety with him around...Plus, it's nice to be able to ask him to feed her once in a while while I pump! (I have to tell a funny on my husband, though. This morning when I fed Anastasia, she vomited all over me. Hubby was walking past, but stopped dead in his tracks when he saw what was happening. "Whoah!...Nice!" was his automatic response, as he stared, both horrified and in awe of Anastasia's "talents." He didn't stop to think to bring me a towel...)
By the way, I forgot to mention that yesterday Anastasia weighed 11 lbs. 1 oz. Tomorrow a nurse is supposed to drop by to check in on us; I wonder if Anastasia gained or lost weight since she's been home? I suppose we'll find out.
December 24, 2005
The home health nurse came today, and seemed shocked to find such a large baby in her care. She weighed Anastasia, who's still 11 lbs. 1 oz. She was pleased with how Anastasia looked, and suggested that she just call in next week, instead of visiting.
I must say that our girl is getting good at taking her bottle, and is becoming more animated and curious all the time. She seems to love her red and white checked linens, her brightly colored mobile, her swing, and several of her music CDs. She also seems to be really happy that mom and dad don't leave every day. At night, if she's squirming in her co-sleeper, all I have to do is reach out and hold her hand, and she calms right down.
We had a lovely, quiet Christmas Eve with my in-laws (who got to hold their grand daughter for the first time!), and tomorrow, my mother is coming over for more quiet celebration.
December 27, 2005
We had a relaxing Christmas, spent mostly in the nursery attending to Miss Anastasia. (In other words, we enjoyed ourselves!) My mother was shocked to see Anastasia "feast" in the afternoon, taking bottle after bottle, seemingly not satisfied until she was stuffed like our Christmas turkey. Well, we're a little shocked by it, too, but you can't exactly turn down a hungry baby! It does seem we are either worried she isn't getting enough milk, or worried that she's eating too much.
Anastasia's apnea monitor has sounded for a "low heart rate" (i.e. brady) several times in the past several days. The first was while she was eating; it was a quick one and she self-recovered. Then there were several during the night, where we weren't even awakened by the alarm. Today, the alarm sounded while I was washing her bottle, and I ran into the nursery. She was fine, just wiggling around. This made me suspect the alarms at night might be false. But as if to prove me wrong, a while afterwards Anastasia refluxed, and her alarm beeped three times. She self-recovered, but it's still scary. Then her alarm went off again; this time her daddy was holding her and said it was definitely a false alarm. We tightened her leads, and so far so good.
In other news, I witnessed Anastasia turn over onto her side yesterday. She lay there a while, then rolled back over onto her back. Today, when we gave her supervised "tummy time," she was scooting all over the place.
December 28, 2005
Last night we had a scare....but it was with my hubby, not Anastasia.
At about 10:30 pm, my husband the emergency room to see if some symptoms he was experiencing (including shortness of breath and lots of pressure on his chest) could be of concern. They told him to come right in. They ran a multitude of tests, checking his heart first, then making sure nothing was wrong with his lungs. Finally, they proclaimed he had extremely bad reflux - bad enough that there's some (temporary, we think) damage to his esophagus. They gave him some heavy duty medication via an IV, and told him to keep the doctor's appointment he has today. Hopefully, they can get this under control quickly, and he'll be feeling better soon. We were both up until the wee hours of the morning, and now we're exhausted.
On a positive note, Anastasia goes on an outing tomorrow to see her pediatrician for the first time. We have a number of questions about our girl's feedings, her gassiness, and her reflux, and we're looking forward to seeing whether or not she has gained weight.
December 29, 2005
Today was our first real outing with Anastasia, and it showed what novice parents we are. Last night I suddenly realized I'd have to pack a diaper bag, and just before bed it dawned on me that we'd better bring some bottles with us, too. Just how to do that was something we had to talk over. Eventually, we decided to bring along a car fridge (one of those that holds about three soda cans), put the milk in there, and bring the bottles separately. And then...well, I guess Anastasia would have to drink cold milk! We are trying very hard not to waste any breast milk, and breast milk mixed with fortifier (vitamins) can only be stored so long.
Morning came, and I got up quite early so I'd have plenty of time to pump, dress, feed Anastasia, dress Anastasia, and get to her doctor's appointment. It wasn't until we were down the road that I realized we'd forgotten the milk! Thankfully, we didn't need it; Anastasia mostly slept.
Anyway, Anastasia's first pediatrician appointment went well. We liked the doctor; she listened and was willing to answer all our questions. First she weighed Anastasia, who is now 11 lbs. 5 oz. That's considered acceptable, but not great. (They aim for her to gain an ounce or two a day, and seven days ago, Anastasia was 11 lbs. 1 oz.) I told the doctor I felt Anastasia's gassiness caused her to eat less, so she thankfully said it was okay to use an over the counter infant gas remedy, acknowledging that it may or may not work. She also gave us a prescription for reflux medication, if we feel she still needs it once her gas is (hopefully) under control. We will see the doctor again in one week, mostly so Anastasia can be weighed again.
December 31, 2005
A new year is upon us, and while it's been a truly blessed year, we're glad it's past. We've had trials we never dreamed we'd go through...but we've come out of them feeling blessed, having grown in so many ways. Nonetheless, we're tired.
Anastasia is doing much better now. I've been giving her an over the counter baby gas relief medication, and it's worked wonders. Our girl went from a squirmy babe who couldn't sleep or eat much (and who, uncharacteristically, was grumpy) to a contented baby who would sleep all night if I'd let her, and whose feedings are back up to where they were before her gassiness became so bad. Thank goodness! It was awful to watch her writhing day and night.
We also decided to put her back on her reflux medicine. We'll see if that helps, too. (Although I must say she hates the peppermint taste of the stuff.)
I can't believe we've had Anastasia home for over a week! It feels like only a handful of days. But now we're getting settled into a routine, and I've even begun putting Anastasia in a front pack, and lugging around her monitor, so we can cuddle even while I try to get some work done :)