October 2, 2005
Several exciting things have happened over the past few days...and, of course, our telephone line (and therefore our Internet connection) has been down since Friday.
Friday night, the nurses told me I could bring in a few pieces of clothing for Anastasia...because, they said, sometime toward the end of the week they'd be putting her in a crib. My mother's heart was thrilled by the prospect of actually buying my daughter some clothes - but the grandmas beat me to it. First, my mother in law confessed to having stashed away a few preemie clothes, and then my mother went shopping. Anastasia now has more under-5 lb. clothes than she can probably use!
Then when we walked into the NICU on Saturday morning, we discovered Anastasia in her incubator, already dressed. A nurse had donated a preemie sleeper outfit, which was adorable, but still much too big for our girl.
When Sunday morning came, we were in for a shock. Anastasia was no longer in her incubator. She was in a crib!
She weighed in at 4 lbs. Sunday morning, and the nurses kept her too-big sleeper on, swaddled her, and wrapped her in the quilt a volunteer made for her, just to make sure she'd keep her temperature. She has, and seems to be thriving in her new environment.
Here are some photos of Anastasia in her first set of clothes, and in her first crib.
Anastasia's first set of clothes are preemie sized, but she swims in them!
In her crib!
October 3, 2005
Today I walked into the NICU in good spirits, carrying a bag of adorable, grandma-given baby outfits, expecting to see my girl snug in her crib. Instead, I saw three nurses working on her.
Anastasia's heart rate was extremely low, her respiratory rate was very shallow, and a nurse was "bagging" oxygen into her lungs. Another nurse was suctioning gunk from our baby's nose and mouth. I stood back, hardly daring to take my eyes off Anastasia's monitor. One minute, her numbers were extremely low, another minute they rose, only to fall back down again. The rises and falls seemed to last forever, and the nurse bagging Anastasia looked frantic.
At last, Anastasia's heart leapt to a normal rate and stayed there, and her respiratory, while still a little shallow, was good enough to stop bagging her. A nurse grabbed my hand and pulled me over to the crib so I could finally touch my baby. Anastasia's primary nurse, who'd been on her lunch break, now returned and assessed the situation. Moments later, she placed Anastasia in my arms, where she seemed almost normal, except that her skin was grey.
Anastasia's primary nurse was watchful and called the doctor in several times. After about ten to fifteen minutes, they transferred Anastasia to a warming bed (something that looks a bit like a tiny surgery bed), undressed her so they could more easily see her breathing, and put her on a CPAP machine, for a little extra support.
In the end, the doctors decided Anastasia had refluxed up some milk, aspirating. Her instincts told her to hold her breath so the food wouldn't end up in her lungs. It appears this worked; an X-ray revealed that her lungs looked pretty much the same as they did a month ago. And, after several minutes, Anastasia appeared to return to normal.
From now on, she will be fed only laying on her tummy. And her mommy sincerely hopes she will never walk in on something like that again.
October 4, 2005
I haven't been in to see Anastasia yet this morning, but when Anastasia's neonatologist called a few minutes ago, he let me know she's still on the CPAP machine. We discussed the possibility of putting Anastasia on a reflux medication, but the doctor says that the meds don't work that great, and that there's some controversy about using them with little babies. Nonetheless, it's an option they are keeping in mind.
I am both eager to see my girl this morning, and dreading it. I don't think I can bear to again see her go through something like she did yesterday. Ideally, of course, this won't happen again, but I have a strange fear of it.
I've discussed with both the doctor and Anastasia's primary nurse what happens to babies when deprived of oxygen for as long as Anastasia was yesterday. Both say it doesn't seem to hurt babies; they are used to low oxygen in the womb, and their bodies are good at growing and healing. Still, it's hard to believe there aren't ramifications.
Anastasia also had an eye exam scheduled for today. The doctors are, unfortunately, proceeding with it. The nurses describe the procedure as "barbaric" and advise parents not to be in the room when it happens. Hardly the kind of thing I want Anastasia going through after her ordeal yesterday. They will, however, keep a close eye on her, and if she's not tolerating the exam well, they won't proceed.
To top it off, our car is having issues. (As it always seems to at the most stressful moments in our lives.) So, my husband is driving his big pickup, which hogs expensive fuel.
I will post an update later today, after I've been to the hospital. Please pray for our baby.
October 4 (part II)
My visit with Anastasia went fairly well today, but she's in such discomfort. She's still on the CPAP because her saturation numbers plummeted when they tried to put her back on the Vapotherm. And each time she ate today, she had obvious reflux problems, spitting up, arching her back, and crying. We did Kanagroo Care twice today, and as Anastasia's primary nurse said, "That was just what both of you needed." Anastasia looked better afterward, and I felt a bit better, too.
The doctor decided to prescribe a reflux medicine for our girl, so hopefully she'll be in less pain, and as a result, breathe better.
Anastasia also had her eye exam today, and it produced good news. Her eyes seem normal so far, and the eye doctor doesn't need to see her again until a month has passed.
October 5, 2005
Anastasia seems much more herself today. This morning, she was taken off the CPAP (which is a very uncomfortable thing for her) and put back on the Vapotherm machine. When I walked in the door, she was sleeping peacefully, but soon woke up, ready to cuddle. The reflux medicine seems to have helped, although she still has some mild coughing associated with reflux. The nurses don't want to rush her, though, so it may be a few days before she's back in clothes and in her crib.
Anastasia, with her CPAP, on October 4th.
Anastasia today, October 5th:
October 7, 2005
Anastasia is still in her warming bed, but the nurses have put clothes on her again. She did extremely well today, only desating her oxygen levels once, when she had a fairly minor spit-up problem. Otherwise, she soared through the day, sucking my pinkie, yawning, stretching, looking around her, and sleeping. She is now 4 lbs. 6 oz.!
October 9, 2005
Anastasia is on her lowest Vapotherm setting ever, and if she continues at this rate, may soon graduate to ordinary oxygen prongs, which will give her less "support." She's also back in her crib, and showed her first real attempt at grabbing an object. The nurse gave her a "binkie" (i.e., pacifer) and she reached out for it, and held it for a moment. Later, she successfully held it in her mouth, using both hands.
The reflux meds also really seem to be working; not only does Anastasia appear to have less painful reflux, but she's breathing better, and the nurses are suctioning her nose less often.
In her crib, with her monitor and her Vapotherm.
October 11, 2005
Yesterday was Anastasia's big "six-oh;" she was 60 days old, and therefore was ready for her first immunization shots. Two nurses (both were dreading the shots..."This is why we're not pediatric nurses," they told me) each took one of Anastasia's legs, and at the same time, gave her a shot. Then they repeated the procedure. The adults in the room may have been tense, but Anastasia took it all very well. She frowned and squirmed, but only cried a tiny bit. When it was all over, she wasn't crying, and the nurses handed her to me for a good cuddle. She gave three or four loud cries, then snuggled in and fell asleep. I think she was just telling me how mean her nurses are :)
Anastasia was also taken off the Vapotherm yesterday and is now on ordinary oxygen prongs. She seems to be tolerating it very well. Another first was a huge cry from her, when the nurse took her from her crib and put her in my arms at a different time yesterday. She didn't want to be disturbed, and so she disturbed the whole pod. It was wonderful to hear her make such a loud, hearty cry.
October 14, 2005
Anastasia is now a little over 5 lbs! Overall, she seems to be doing great. She's gaining at least an ounce a day, and appears to be tolerating the oxygen prongs pretty well. She still sometimes has bradys (when her breathing becomes very shallow and her heart rate goes down), but when I've seen them, they appear to be much more mild. (She doesn't turn blue, and her heart rate doesn't drop as low.) However, last night, the nurses reported she had many bradys, and some were severe enough they had to blow oxygen in her face. So the doctor has told us all to be on the lookout for signs of infection or a cold, since many bradys are often an indication that a baby is sick.
It's harrowing, and every time I want to rejoice for Anastasia's progress, I find myself hesitating just a little. Each time she seems to do very well, it seems she has a set back.
Still, she's such a little joy. Last night we were positively giddy, because when my hubby came into her pod and spoke to her, she turned her head toward him, opened her eyes, looked for him, and squeezed his finger hard. The down side of her affectionate behavior is we feel she misses us when we're gone. It's a strange thing to be a parent of a little baby, but only able to visit her a few hours a day.
A few of you have asked what our schedule is like these days. On weekdays, my husband gets up to go to work at either 4:30 or 6:30. I spend the morning doing essential household tasks, like laundry (including Anastasia's little clothes) and dishes. Some mornings are even busier, as I have to make calls to the insurance company and the like. All day long, I'm also expressing milk every 2 1/2 to 3 hours. No later than noon, my mother picks me up to take me to the hospital. I spend all afternoon there, holding Anastasia, or talking to her, or just watching her in her crib. My husband comes to the hospital immediately after work. After his visit, we drive home, eat (around 7 or 8pm), then crash into bed.
The weekends are much the same, except that my husband tries to squeeze in his household chores. We also try to find some time to relax with each other on the weekends - "try" being the important word here.
We will be so glad when our little girl is at home and healthy.
October 17, 2005
Yesterday, Anastasia weighed 5 lbs. 5 oz! Her ability to grow so quickly amazes us, and we are pleased to see little fat rolls forming on her legs and arms.
The doctor also ordered me to start trying to breast feed Anastasia, which is something I've been doing a little bit on my own, anyway. Now, the lactation consultant is helping, and we are making more vigorous attempts. Anastasia is definitely interested, but like most preemies, tends to fall asleep, and doesn't have enough sucking power to really get any milk on her own. They say she'll need to be at least 36 weeks (she's currently 34 weeks) before she can really start breast feeding - but even then, it will have to be supplemented with her NG (feeding) tube. Nonetheless, Anastasia must be pretty excited by the prospect, because she had her eyes open for a longer period of time, and did a much better job of trying to focus them. (Instead of letting her eyes wander up or to the side, they were centered...although crossed, like many full term babies.)
October 17 (part II)
Anastasia did very well today. Last night, she had fewer bradys (where her breathing and heart rate drop) - and no bradys at all this morning or afternoon. When I was visiting, she didn't even desat (where her blood oxygen levels drop). She also smiled a lot when I first started talking to her today. She may have even been smiling at me :) To top it off, she did a great job trying to breast feed. She latched on well and stayed awake for about 15 minutes. Her nurse today was so excited by this, she ran and fetched a bunch of other nurses, and they all watched and were awed. (It was an unusual experience for me!) She's still not getting milk on her own, but all the nurses say Anastasia is conquering the hardest part, and the ability to get milk will come as she gets older. To make her mommy even happier, Anastasia had her eyes open - and focused - for at least ten minutes today.
October 19, 2005
I've had several interesting conversations over the past couple of days. For example, I spoke with my obstetrician the day before yesterday, and he mentioned that he'd seen one of Anastasia's neonatologists a few days earlier. "I can't believe how well that baby is doing," Anastasia's doctor told my OB. She amazes her parents, too. And my OB is forever telling me how glad he is that I talked him into a C-section.
A nurse who works for our insurance company called yesterday morning. "I hear they think Anastasia will be nippling soon," he said. "That seems awfully optimistic. How are you feeling about this?" First, I was pleasantly shocked that my insurance company nurse was keeping such close track of things, and that he would care about something that didn't affect the cost of Anastasia's medical care. I then explained that I'd been "nuzzling" with Anastasia for a while, and that yes, she'd already started going to the breast (albeit without getting any milk to speak of). He was shocked that such a young extreme preemie could do that. I laughed and said, "Every time we did an ultrasound before she was born, his girl was sucking her fingers! She had a head start!"
Anastasia is still doing very well, although yesterday must have been a growing day for her because she was very sleepy. One of her primary nurses had been on vacation for a week, and when she returned yesterday, she was said "I can't believe how much she's grown!" Most of the nurses have taken to dropping by and checking on her from time to time; after three months in the NICU, most of them have tended to her at one time or another, and many have become attached to her. So they oooh and aaaah over her chubby cheeks, and call her "the best dressed baby in the NICU." (Thank you, Grandmas.)
October 20, 2005
Yesterday was trying. It began with Anastasia once again showing almost no interest in breast feeding (i.e., she wanted to sleep all day instead). This was disappointing, although certainly not cause for a mommy meltdown. But as she began getting her food through the NG tube instead, she started having bradys. The first one was quite bad; I was in another room, pumping, when it happened, but the nurse said Anastasia wasn't breathing at all. She had to pull out the oxygen mask for our girl. The second time, I was standing at her crib side, and Anastasia turned white and limp. The nurse turned up her oxygen until she recovered. I cried. I thought if she had one more brady, I'd go off the deep end.
I told Anastasia's nurse that if our baby didn't come home in November, they'd have to check me into the psychiatric ward. Another nurse in the room chuckled and said it was very rare for babies not to go home by their original due date. Then she mentioned the first name of the last baby she could recall that stayed a bit longer. "Her mom was going crazy, and we were having an employee appreciation day where we could get a free massage, so I sent the mom down to get one in my place."
The day ended better, though. As my husband and I were about to leave, Anastasia opened her eyes...and she knows we can't leave her when she's wide awake. :) She was big-eyed, looking everywhere, and I put my hand on hers. She very quickly pulled my hand to her mouth and began sucking on my knuckle. Hubby and I looked at each other and we knew what had to be done. I took Anastasia in my arms and she latched on like a little barracuda gobbling down its prey. Everyone in Anastasia's pod rejoiced.
This morning, when I got our routine call from Anastasia's doctor, he said they were going to stop giving our girl caffeine. It may seem strange, but they often give extreme preemies caffeine to help them "remember" to breathe. Anastasia has been on the stuff for quite some time, and they've been upping her dose as she gains weight. It seems almost cruel to make her go cold turkey...and I worry that it may make her apnea spells worse. Just another instance where we have to put all our trust in God.
October 21, 2005
In a few days, it will be exactly a month until Anastasia's original due date...the probable time when Anastasia will come home. We are both excited to take Anastasia home, and frightened. She has a number of important hurdles to overcome before she comes home, and it's hard to imagine it all "wrapping up" so quickly. I'm at the point now where I'm having nightmares about her being home and something awful happening. I suppose this is typical anxiety, but I'm trying not to give in to it. I really do believe God is in control.
It doesn't help that my hsuband and I are both completely exhausted in a way we never dreamed we could be. Four months in the NICU is a long haul. We feel fortunate if we have the time and energy to do laundry, and while we're sick of frozen TV dinners, we try not to berate ourselves for only having enough stamina to cook them, instead of something healthier.
On the other hand, we're so proud of our daughter. Imagine! She's doing all kinds of things her body just wasn't designed to do at this point. She should be peacefully swimming inside me, not having to worry about breathing or learning to breast feed, yet she hits new developmental milestones regularly. She inspires me.
When I talked to Anastasia's doctor yesterday, he answered my questions about taking our baby off caffeine. Apparently, preemie metabolisms are quite slow, and it will take a week or so for all the caffeine to disappear from her body - so there's no need for the doctors to wean her off the stimulant.
This morning, the doctor gave nothing but encouraging words. He feels Anastasia is making very good progress. I told him that every time she has a brady, it's devastating for me. "That's a normal and appropriate parental response," he said, but then assured me that her bradys are becoming fewer, and less severe.
Anastasia is now getting 56 ccs of milk (almost two ounces) every three hours. That's an amount that would be appropriate for a full term infant! I knew that packing on the pounds was important for Anastasia's development, but I've also recently learned that Anastasia's chronic lung disease makes her burn calories more quickly. This makes sense, since her breathing can be quite labored. (Breastfeeding also makes her burn more calories, since it's hard work for a preemie.)
Some of you have asked why Anastasia hasn't been weaned off her oxygen. Weaning is exactly what the doctors want, but right now, Anastasia simply needs all the oxygen she's getting (1 liter, at about 35-45%). The reason she's slow to wean is, again, her chronic lung disease. Her lungs need time to heal. It's quite possible Anastasia will come home with oxygen...and, worse case scenario, that she will continue to need supplemental oxygen until she's about two years old.
October 23, 2005
The big news today is that Anastasia had her first tub bath! She's had one scheduled for about a month now, but it was difficult for my husband to be there at a time when it was convenient for the nurses...But at long last, we all got it together. Anastasia seemed to love the bath (I couldn't help but wonder if she was thinking: "Ah, amniotic fluid! It's been so long!") She sort of snorted her way through the bath with excitement, and seemed especially relaxed afterward.
In other good news, Anastasia is now 6 lbs. 2 oz! She really looks like a newborn now. The doctors also put her back on caffeine, because she had an almost immediate reaction when they removed it from her diet. She was having more frequent and more severe bradys. She seems much better now, and is more wakeful, too. Most days, she's able to try to breast feed, and she had her longest session ever on Saturday (about 10 or 15 minutes of periodic sucking); she only swallowed about 1 cc, though. Today she was too cozy after her spa treatment (i.e. bath) to work up the energy to breast feed.
October 26, 2005
Anastasia is 6 lbs. 6 oz., and is now considered "big enough" that she's not getting separated milk. (I was separating foremilk - the watery first five minutes of milk flow - from hind milk, which is fattier.) She also had only two apnea spells last night, and neither was severe. That's a real milestone!
Yesterday, I had her discombobulated. I arrived at the hospital about a half hour earlier than usual, wanting to catch her before she had a particular meal, so we could try breastfeeding. It seemed to confuse her; she wouldn't go to the breast. She kept looking at me oddly, as if to say, "Mom, this is not the time of day we do this!" It made me realize how regimented her life has been in the NICU. (I'm not sure if that's a good or a bad thing!)
Hubby and I are trying to prepare ourselves for Anastasia's homecoming. My mother and I are painting the nursery, and I'm working on clearing space for a co-sleeper, possible apnea monitor, and possible oxygen equipment in our bedroom. We are mentally preparing ourselves for the idea that our baby will be attached to oxygen for a while...and I'm trying to get used to the idea that Anastasia may not be able to breast feed for all her meals. The nurses say it's unusual for an extreme preemie with chronic lung disease to breast feed 24/7. The idea of continuing my intimate relationship with a breast pump until Anastasia is one year old is a little depressing. But if I have to, I will. And even though I want to expect the worst in that department, who knows? Anastasia might surprise us all. After all, she survived the troubling circumstances of her birth...Maybe she'll be in the minority of extreme preemies who learn to breast feed well, too.
October 28, 2005
I think we're in the home stretch with Anastasia; Hubby and I hope she'll be home for Thanksgiving. I feel like a lioness, though. If anything stands in the way of our baby coming home this month, I think my claws will start to show :)
Yesterday, Anastasia weighed a little over 6 lb. 8 oz., and measured 17 1/2 inches in length. Gradually, she's becoming more sociable, opening her eyes and wanting attention. The nurses say this is excellent for a baby with chronic lung disease; such babies often take longer to "wake up" to the world because they're tired from working so hard at breathing.
Anastasia will sometimes try to breast feed with great vigor, but other times, while she's excited by the prospect (her saturation levels always soar when we try to breast feed), she doesn't want to go to all the work of sucking. We expect it will take at least another week for her to consistently breast or bottle feed. This would be frustrating, except that in my several months in the NICU, I've seen many, many babies struggle to learn to eat orally...babies who were much closer to term than Anastasia is.
I have, however, been having trouble with my milk supply. As it's dropped, I suddenly realize just how disappointed I'll be if I can't breast feed Anastasia at all...or even provide milk for her to bottle feed. The lactation consultants at the hospital tell me I've been trying to do to much and am too stressed to produce enough milk. (What? You mean rushing around all morning trying to do housework and fix up a nursery and express milk, then rushing to the hospital and spending all afternoon there, and then rushing back home and trying to make dinner and my husband's lunch for the next day and finish laundry and express more milk is making me stressed???) So I'm trying to get myself used to the idea that the house may be a mess when Anastasia comes home...and that's okay. It's much more important for me to provide her with breast milk than it is for me to make the house pretty for a baby who honestly won't even notice the dust on the furniture. (Yes, I could just feed her formula, but breast milk is soooo much better for her: http://kidshealth.org/parent/growth/feeding/breast_bottle_feeding.html )
October 29, 2005
Today I'm down with a bad cold. My husband will be visiting Anastasia without me, and we are prayerful that I haven't passed the cold on to our baby. Her breathing is labored enough (because of her chronic lung disease) without a cold. It's also possible that my cold is really RSV, a virus that's harmless to adults, but a very serious illness for preemies. (For more on RSV: http://www.preemiecare.org/rsvfaq.htm )
October 29, (part II)
Hubby had a good visit with Anastasia today; she was ready to snuggle with him. But he did say she was pretty congested. She's been this way for about a week now, and the nurses think she's refluxing milk up into her nose. They've been suctioning her nose and mouth frequently, but now they are getting blood when they do this. Either the oxygen, or the oxygen prongs, or the suctioning (or all three) are causing a lot of irritation in her little nose. My husband said when they suctioned her this morning, she cried and cried...something she never does.
She also had one brady while he was there, but overall she seems to be having fewer of these. The last time I witnessed her having a brady was a few days ago, and I was struck by the fact that she appeared to be stubbornly refusing to breathe. Her respiratory line on the monitor was completely flat, and no amount of ticking or tugging on her would make her breathe. The nurse grabbed the oxygen bag and blew oxygen in her face. Anastasia tried to pull her face away, grimacing. Finally, the oxygen blowing on her made her mad enough to cry a little...and then she started breathing again. I will be so glad when that "something" in her brain clicks, and she starts wanting to breathe all the time.
October 31, 2005
It's pretty torturous to be stuck here at home with a silly cold. I want to hold my baby! (And I have a feeling she misses me holding her for hours and hours.) I'm mostly resting, because I want to get over this quickly...which has the bonus affect of making my milk supply increase a little. Each day, my husband takes my milk to the NICU and then holds our daughter for a while.
They have decided to stop upping Anastasia's feedings for the time being. (She's getting 68 ccs - over two ounces - every three hours.) She's been obviously uncomfortable as they stuff her each day, and recently, she started throwing up some milk. (One of Anastasia's primary nurses looks at the syringe they use to feed Anastasia and says, "This is bigger than her leg. If you were forced to eat something the size of your leg every three hours, how would you feel?") We don't want Anastasia to burn so many calories (with her labored breathing and trying to breast feed) that she looses weight. But for now, the doctors say her weight is superb for her age, and they aren't worried. (She is a bit chubby, ya know.)
This past week, when the nurses have suctioned Anastasia's nose and mouth, they mostly gotten milk that has refluxed, along with some blood. So the doctors decided to try giving Anastasia oxygen another way; they've cut off the nasal prongs to her oxygen tubing and now just let the oxygen blow in her face, just under her nose. Last night, she seemed to be doing okay with this, although (as expected) her oxygen requirements went up. The night nurse also told me her breathing seemed more shallow. So we'll see. Typically, babies go home with this style of oxygen, but if Anastasia doesn't tolerate it well, she may go home on nasal prongs.
I will post again today, when I hear from the doctor.
October 31, (part II)
The doctor says Anastasia weighs 7 lbs. 2 oz.!