Tips for Buying & Making Preemie Clothes
How to Help Parents of Preemies
Anastasia's first year (2005)
Eating & Reflux (year 2, 2006)
Back to Sleep! (2007)
And Zane, Too (2008)
Allergies & Getting Big (2009)
Starting School (2010)
It's All Good (2011)
Search the Miracle Baby bebsite
August 2005
August 5, 2005:
I will be checking into the hospital Tuesday the 9th, where doctors can monitor Anastasia for any signs of stress, and me for signs of infection. We'll also be receiving steroid treatment, to help develop Anastasia's lungs.
I'm excited the docs can take a more pro-active approach now, while at the same time, I'm not looking forward to being away from my husband for so long. (He'll visit, of course, but it's not the same...)
Anastasia has already beat some odds. The doctors thought I'd miscarry at around 22 weeks, and here I am nearly in my third trimester! But please keep praying. There is a long road ahead...
August 13, 2005
On at 5:57 pm on Friday, August 12, 2005, Anastasia Elise was born, weighing 1 lb. 13 oz. and measuring 13 3/8" long.
Anastasia on her birth day, with one of her nurses.
I'd been having contractions since the wee hours on Tuesday. They started very light, and grew longer and more painful until the docs felt I was in full labor. (I was hoping for a long bed rest at the hospital. I was aiming for Anastasia to be at least 30 weeks before she was born, and the docs were hoping for at least 28 weeks.)
A choice was given between a C-section and a vaginal birth, but we chose a C-section, as it gave Anastasia, an "extreme-preemie," the best chance of survival. The surgery went quickly and smoothly; Anastasia was born within three minutes, and the neonatalogist whisked her away. The doctor got her on a respirator quickly, and she appeared to be in good health, considering her young age (25 gestational weeks).
After 12 hours of being stable, one of Anastasia's lungs developed a hole and collapsed. The doctors did an emergency surgery to open up the lung again, and Anastasia has since been stable. The excellent staff of neonatologists at the hospital say she's healthy in every way for her age...except for immature lungs.
Please pray for Anastasia's health - especially her little lungs. The doctors say that every hour she survives, her chances for overall survival increase. This is a day by day, hour by hour, moment by moment thing, but we trust God to keep our precious little daughter safe.
Happily, she responds well when mom and dad are in the clean room with her; she definitely recognizes our voices. She also still tries to suck her fingers, just as she did inside me; she frequently sucks on the circular tape that keeps the tube in her mouth in place. In addition to feet the size of the average thumb (from end to first knuckle, that is), she already has peach-fuzz hair that's dark like her mommy's.
As soon as I am feeling better, I will post more photos of our beautiful Anastasia Elise. And, as always, we will make sure this website keeps up to date with information about Anastasia's progress.
Thank you, everyone, for your prayers. We are so appreciative.
August 14. 2005
Today, Anastasia is being treated for jaundice, but has developed no other problems. On Monday, August 15, I will be sent home from the hospital...but baby Anastasia will stay. For how long? Probably until about the time of her original due date, November 23, 2005.
August 17, 2005
If Anastasia was still inside me, she'd be 26 weeks today.
Fortunately, she's doing very well, under the circumstances. One of her doctors even went so far to say he's "very pleased" with how she's doing...high praise in the NICU. Yesterday, her chest tube was removed because her lung has healed, and the doctors are gradually weaning her off the respirator. Some days, her oxygen levels are normal, but most days they hover a little low. Still, they are so much better than they were a few days ago.
Anastasia's heart rate and breathing go up when she hears mom and dad (a good sign), and she wiggles around a lot, pulling at the wires attached to her. She stubbornly tries to get her fingers in her mouth, but ends up sucking on the tube in her mouth, instead.
Yesterday, Anastasia began taking small amounts of milk through a stomach tube. (She is too young to take it by sucking.)
All in all, we are so very encouraged, and we marvel at what a strong, stubborn little girl we have :)
Special thank yous must go out to everyone who is praying. We see those prayers in action every day when we visit our precious baby.
August 18, 2005
We have more good news to report! Many preemies get something called “brain bleed” which is exactly what it sounds like. The bleeding is caused by immature, tender membranes, and sometimes injury before, during, or after birth. Well, yesterday Anastasia had her first brain scan to look for brain bleed, and it showed no bleeding whatsoever. I cried when I heard the news.
The doctors continue to wean Anastasia off her ventilator. She is doing
most of her breathing on her own now, but this means rises and drops in
her oxygen level. Preemies often “forget” to breathe. In fact, if
Anastasia were in the womb right now (and my water hadn't broke early), she’d be doing “practice”
breathing with amniotic fluid. But not constantly. She’d breathe a bit, then go
to sleep and let the placenta do it’s thing. So the docs are trying for
“force” her to learn to breathe a bit sooner. Sometimes, momentarily,
she forgets to breathe (much like someone with sleep apnea), but
overall, she is doing very well. The doctors give her small doses of
caffeine to help her breathing.
She's still a wiggle worm, and spends a lot of energy trying to get
those tiny little fingers in her mouth. Most of the time when she hears
her mom’s or dad’s voice, her heart rate and oxygen level go up with
excitement.
We are so proud of our little girl.
P.S. I have added a FAQ section to the website, which I hope answers the questions everyone seems to have :)
Anastasia in her "green house," a plastic dome that helps keep her warm. You can also see her monitor (upper center), and ventilator (right).
August 19, 2005
Today, Anastasia is one week old.
Yesterday was a difficult day. The doctors are trying to wean Anastasia off the ventilator, but she keeps "forgetting" to breathe. It's tough to sit there and watch her stop breathing...and do nothing. If this apnea goes on long enough, the nurses tickle her feet and gently poke her to annoy her...which makes her breathe again. But we also got a good lesson about why it's important to wean her off the ventilator as soon as possible. The nurses were suctioning gunk out of Anastasia's lungs and were afraid she had an infection. Fortunately, her tests results didn't show an infection (although the docs will continue to check for this), and they believe the gunk comes from the respirator irritating Anastasia's lungs. While the ventilator is a good thing, too much of that good thing can be very harmful to our baby's lungs.
Anastasia is also back on her jaundice treatment; this isn't a surprise. We expect that she'll be under the sun lamp quite a bit. (One nurse, as she put the plastic half-tube over Anastasia, called it the baby's little greenhouse, and the sun lamp above her, her grow lights...Any sense of humor is helpful right now!)
Today, I also got to help change Anastasia's diaper for the first time, and I took her temperature (under her arm). I wasn't allowed to take her blood pressure, but a nurse did so, with the tiniest little blood pressure cuff I've ever seen. I was also able to feed Anastasia today. The nurse hooked up a syringe of milk to Anastasia's feeding tube, and allowed me to very slowly push milk into her tummy. Today, the nurses will be upping Anastasia's feedings from 3 ccs to 6 ccs (slightly over one teaspoon).
The nurses have taken to calling Anastasia their "spunky baby." She lets them know when she doesn't like something, by wiggling and batting at people, or trying to pull out cords. And yesterday, when the nurses were putting her into a new position, on her tummy, she must not have liked it. She put her hands up near her shoulders and pushed them down toward her waist - pushing herself up a good inch. The nurses' jaws dropped. She is one strong little girl.
Sometimes, when she's just fed up with all the poking and prodding, she gets a wrinkled up face, and I know that if she didn't have a tube running down her throat, she'd be screaming bloody murder. Yesterday, when we heard one of the other little NICU babies crying, we agreed that when we hear such a cry coming from Anastasia, it will be music to our ears.
August 19, part II
This afternoon, the doctors and nurses prescribed a soothing balm for Anastasia - and her mommy. I was allowed to hold our baby for the first time...and for a good hour!
My first chance to hold Anastasia.
Earlier today, Anastasia was switched from her old ventilator (which constantly breathed for her) to a new ventilator (which only breathes for her when she "forgets" to do it herself); this, in itself, was a pleasant surprise to us. (The respiratory therapist says that Anastasia's made very good progress in one week.) Then the nurse brought in a comfy chair for me to sit in and gave me the good news...At long last, I could cuddle with our baby!
I held Anastasia next to my bare skin for an hour, and she not only tolerated it, she enjoyed it. Her stats stayed very good the entire time.
I cried.
The nurses call this "Kangaroo Care," and it's considered important for Anastasia's health. Babies who are held this way improve physically...and it also helps moms produce more milk.
Tomorrow, assuming Anastasia is up to it, my husband will have a chance to do some Kangaroo Care himself.
August 20, 2005
Each morning, a neonatologist from the hospital calls to tell us how Anastasia is doing. Today was our first day to hear bad news during such a call.
The doctor says Anastasia has developed Chronic Lung Disease (or Bronchopulmonary Dysplasia, BPD). "It's to be expected," the doctor told us. Although most infants grow out of BPD, and there are rarely long term side effects, it's a serious condition while Anastasia has it. Basically, BPD is an inflammation and scarring of the lungs. There is no treatment.
In addition, the doctor believes Anastasia has Patent Ductus Arteriosus (or PDA), which is a condition where a little valve in the heart is open, but should be closed. Again, this is fairly common among extreme preemies. It's not a birth defect. It's just that Anastasia's heart isn't fully developed. The result of the open valve is that fluid is allowed into the lungs (exacerbating breathing problems), and that blood is flowing in the wrong direction in her heart. If the opening is smallish, drug treatment is given. If the opening is large, or doesn't close with drugs, surgery to staple the valve closed becomes necessary. We should know later today how big Anastasia's opening is. We're hoping drug treatment is all that's needed...even though she will have to cease feedings while being treated.
To top it off, our car (which we bought for the express purpose of having something efficient for my husband to drive when he was visiting me while I was on hospital bed rest) is having issues. We left the hospital early today, so he could try to solve the mystery of why the "check engine" light keeps coming on.
Thank you to everyone who checks this site, and who prays for our little baby. And thank you to everyone who has written, called, sent cards, or sent gifts. I wish I could take the time to call or write each and every one of you, but just know that your support, encouragement, and prayers are deeply, deeply appreciated.
August 22, Part II
We just heard that the doctors have taken Anastasia off her ventilator and put her on a CPAP machine. While the ventilator took breaths for her when she "forgot" to, the CPAP only provides oxygen. If Anastasia "forgets" to breathe, her nurse must arouse her (by tickling her, talking to her, etc.). Even though this is a good step (and much better for her chronic lung disease), it scares us to death. Please, pray for our little girl
August 22, 2005
The initial heart scan showed about a 3mm opening in Anastasia's heart; one nurse told us this was a "moderate" amount. She also told us that her own daughter, who was also a preemie, had the same condition and had the opening stapled shut surgically...and today, ten years later, you would never know; she's healthy and strong. This is comforting to us.
And so drug treatment began yesterday. It was tough to think of little Anastasia not getting any food for a day, but today, now that she's off the medication, they upped her milk to 12 ccs. The doctors say they can no longer hear a heart murmur (one of the signs of a PDA), so they're hopeful the scan done on her heart today will bring good news.
Overall, Anastasia seems to be doing well. One of her doctors told us she's made great progress since her birth. She's still a wiggle-worm and the doctors say she shows "attitude" - both signs of a strong baby. Her daddy still hasn't had a chance to hold her, but we hope he will soon. She responds really well when I place one hand on her head and the other on her legs - another form of "Kangaroo Care." It always seems to make her breathing and heart rates better.
Our daughter is also starting to change physically. Today she was above her birth weight (although the nurses say to expect her weight to go up and down the first month), and her ears and nose are no longer so flat (common among extreme preemies). It may be my imagination, but I think I see a little bit of my own infant pictures when I look at her :)
August 23, 2005
This morning the doctor's phone call was very positive. They say Anastasia is doing "great" on the CPAP; she "forgets" to breathe sometimes, but no more than what was expected. They also removed her IV today, which will reduce her chances of infection. The doctor I spoke with is very conscientious about not giving parents false hope - to the point of being pessimistic - but today he said Anastasia went from being the baby they were most worried wouldn't survive to being, in his words, "a rather routine case." (Praise God!) Basically, he said, Anastasia just needs to grow, and then she can go home.
We aren't out of the woods yet (it will be at least two months before we can take Anastasia home, and the doctors still must watch her closely for complications and infections), but we're feeling relieved and blessed. Anastasia is our little miracle baby.
Unfortunately, my husband was running a very slight fever last night, so (to be safe) he couldn't see Anastasia today. (We think the fever might be related to a hernia that he will have surgery on this Friday.) Nonetheless, the nurses gave me the okay to visit; I did the usual three minute surgical scrub, wore a mask, and didn't touch her. Again, just in case.
It was so good to see little Anastasia's mouth for the first time. (It had been covered by the tape holding her breathing tube in place.) She's a little drooling fool right now...something that happens when a baby is on CPAP.
I also got to hear our daughter's voice for the first time. The nurse was changing her diaper, and in protest, Anastasia let out two little whimpery, small cries. Her lungs aren't sufficient enough for her to give a robust cry yet.
The doctors have also upped Anastasia's feedings. She's now getting 13 ccs (not quite three teaspoons) of milk, every three hours.
Tomorrow Anastasia would have been only 27 weeks gestation, and by this Friday, she'll be two actual weeks old!
P.S. For those of you who asked, the check engine light on our car turned out to be something minor. My husband pulled the code, and is satisfied that at this point our vehicle will be fine. Thank goodness he's a mechanic! :)
August 25, 2005
We can hardly keep up with our daughter! Last night we were told that Anastasia has graduated to something called a Vapotherm. It's similar to a CPAP, but more gentle. We were also thrilled to see her entire little face today :) To top it off, my husband got to hold Anastasia for the first time today.
Anastasia's "isolette," or incubator.
Holding her daddy's finger.
August 27, 2005
Anastasia is still doing well, with the doctors and nurses saying we should be very pleased with her progress. She still has some apnea (forgetting to breathe), but mostly she's struggling to breathe deeply enough. All this, we're told, is very common for her situation.
She's been moved from her private pod and into the "public" nursery in the NICU (still no windows for admirers to peek through, though). This has been difficult for us. We're used to our baby having one-on-one care - but now she shares a nurse with two other babies. Also, having other parents come in makes us a little leery of germs...This may seem silly to parents who haven't had an extreme preemie, but we're all too aware that one of Anastasia's biggest enemies is infection.
Still, being in a room with other babies, and being secure in her incubator, we finally decided the grandparents could come see their granddaughter. My mother already has taken a good look at her, but my in-laws, who live several hours away, haven't yet.
Speaking of my hubby, his surgery yesterday went well, but now he has renewed sympathy for what I went through with my C-section. He's still in bed, barely able to sit up (and sometimes unable to)...exactly like I was when I came home. The two of us are hobbling around, but I'm thankful that I'm well enough to help care for him.
I told Anastasia's nurse it was a bit ridiculous that everyone in our family had experienced surgery at the hospital within a two week period. We hope that once Anastasia is home, we won't be back there (wonderful as the care is) for a long while!
August 29, 2005
This morning, one of Anastasia's neonatologists confirmed what we already knew: Anastasia, he said, is "a little miracle."
Still, some days are harder than others. Today, Anastasia's oxygen saturation was up and down more than usual. My mother was in the room with us, and her nerves were shot by the time we left. It made me realize that even though it's still hard for me to watch this, I've really gotten pretty used to it. What a strange thing to be able to say you're used to seeing your child's oxygen go to extremely low levels!