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September 2005
September 1, 2005
Today, our little girl weighed a whopping 2 lbs! The doctors are pleased, and hope she keeps that weight on...and adds more weight, too. They are stuffing her with milk (about 20 ccs, or just over 4 teaspoons, per feeding, with feedings every three hours). This makes Anastasia's stomach pouch way out. It also makes her obviously uncomfortable; she whines as the last few ccs enter her tummy, and has a harder time breathing after each feeding. But the doctors continue to order such feedings because it's so important for Anastasia to put on weight and grow.
Anastasia on August 30th, in her "isolette" or incubator.
The nurses have taken to calling Anastasia the "princess of the pod," because she demands more attention from them than the other babies in the pod (or room). Mostly, they have to keep adjusting her oxygen levels, but one of the most experienced of her nurses assures us her full tummy contributes greatly to these irregular oxygen requirements.
Another ultrasound was done on Anastasia a few days ago, and happily, she again has no brain bleeds. She is a strong, stubborn little girl...and her health shows it. She does sometimes still have a heart murmur, but the doctors are hoping the valve will close on its own as she matures.
All in all, she's doing very well for a little baby born with an APGAR score of only 4! (APGAR is a system doctors use to sum up an infant's condition. 10 is "perfect," and 1 is deceased.)
September 2, 2005
Anastasia is having more apnea, it seems, and more low oxygen saturations, due to her very full tummy. As I mentioned yesterday, the doctors are really stuffing her...This makes it harder for her to breathe (not much room for her lungs to move!) and makes her sleepy (which means she "forgets" to breathe). This is all very typical for an extreme preemie, but it's very difficult for us to watch. When she stops breathing all together, my husband and I stand at her bedside and cry.
But she is a strong little girl. Yesterday, after a nurse moved her, she whined, then lifted her head and moved it - twice! We were amazed that such a tiny baby could do that.
Oh, and today Anastasia is three weeks old (or 28 weeks, if she were still inside me).
It's important to give preemies lots of touch, even if they're hooked up to wires and in an incubator. Here, I'm loving on Anastasia on September 1. Notice how huge Anastasia's tummy is. The doctors are trying to fatten her up by feeding her large doses of milk.
Waking from a nap on Sept. 1.
Anastasia sucked her fingers while in the womb...Now she has a tiny pacifier.
A rare chance to see most of Anastasia's face.
September 3, 2005
Tonight, Anastasia was taken off the Vapotherm machine and put back on the CPAP. This step backwards was taken because our girl was having too many periods of apnea - times when she "forgot" to breathe and her heart rate and oxygen saturation go very, very low. The doctors are also concerned Anastasia might have an infection; they say when a baby goes backwards in her respiratory function, this is often the case.
Please pray for our dear little baby.
September 4, 2005
A little after midnight, the doctor called to say Anastasia had been put on a ventilator. They were also in the process of taking blood and spinal fluid to check to infection, and are putting Anastasia back on an IV. She's also no longer being fed milk, but only fluids through that IV.
I will try to post updates today as they occur, although we plan on spending even more time at Anastasia's bedside, if we can.
September 4, 2005 (Part II)
Anastasia does, indeed, have an infection, and the doctors put her on a round of antibiotics. She's also back on milk, but at a reduced amount (about 13 ccs per feeding). She's still on a ventilator, and this afternoon, the respiratory therapist and doctor decided she was not breathing on her own often enough, and set the machine to breathe for her all the time. She is a very sick little baby.
She's almost back where she began - except now she has an infection, too. However, the staff at the NICU assure us an infection is a curable thing, and once Anastasia isn't fighting so hard to fight off illness, she'll start breathing better again. We are trying to remain hopeful, and know that whatever happens, Anastasia is in the best hands possible: God's.
September 5, 2005
Anastasia seems better today. She's no longer listless, but is as squirmy as ever. Her color looks good, and the dark circles around her eyes are gone.
She's still on a ventilator, but doing more of her own breathing than she was last night. She's also still getting antibiotics - although the doctor told us today that while the initial quick test showed a probable infection, so far the culture hasn't shown anything. The culture is the definitive test, and we'll know the results by the end of the week.
If it wasn't an infection that caused Anastasia's problems, the doctors will look more closely at her PDA (remember that little valve in her heart?). It's causing a murmur again - but it's possible an infection would make the valve open up further. On the other hand, if the PDA is the trouble, surgery may be in order.
So, we're in "wait and see" mode. I'm just relieved that Anastasia is looking better.
But the poor thing never seems to get much of a break. The doctors are already beginning to wean her off the ventilator, and tomorrow she has her first eye exam.
September 6, 2005
We now know that Anastasia has as staph infection. Her antibiotics have been altered to pinpoint just that, and her primary doctor (bless him!) has canceled Anastasia's first eye exam until she is doing better. (The eye exam is very much like one for adults, complete with dilation and bright lights...but extreme preemies are very sensitive to stimulation, and bright lights can be quite stressful for them.)
The doctors are still concerned about her PDA, but will wait to do anything until Anastasia is recovered from her infection.
In the meantime, here are some newer photos:
Here she is at the three-week mark. Compare to the below photo, taken at her birth, and note that the teddy bear is just a little Beanie Baby.
Anastasia on September 4th.
September 9, 2005
Anastasia seems to be responding well to her antibiotics. We can see a difference in her attitude and appearance; she seems more healthy. She's still on the ventilator, but the doctors promise they'll wean her off it as soon as possible - especially since it's irritating her lungs so much the nurses have to suction them for fluids every 1-2 hours. On a happier note, Anastasia continues to grow steadily and is now 2 lbs. 4 oz. She's in the top 15 percent for growth, which is great since many extreme preemies have trouble growing as much as they should.
For those who've asked, I'm getting nearer to being healed; in fact, I was able to clean the house a bit today - for the first time since my bed rest began (about two and a half months ago!). My husband is pretty well healed up from his hernia surgery, and he'll head back to work on Monday. It will be difficult for us both to adjust to his being away from Anastasia so often.
September 10, 2005
When we called the NICU last night to check in on our girl, we were pleasantly surprised to find she'd been taken off the ventilator and put on the CPAP machine...and then the Vaportherm machine. She didn't tolerate the Vaportherm machine very well (she had too many periods of apnea and bradys, where her breathing and heart rate went much too low), so now she's back on the CPAP. Still, it's wonderful progress, and shows she is recovering from her infection.
September 11, 2005
When we visited Anastasia last night, we met a nurse who was new to us. She was aware that Anastasia was born at 25 weeks, but when she learned that my water broke at 20 weeks, her jaw dropped. "You carried her for five weeks after your water broke? How did you do that?" she said. "In all my years of nursing, I've never heard of anything like that." She was amazed that neither Anastasia nor I developed an infection during those five weeks, and that Anastasia had lungs that were able to sustain her outside the womb. She also seemed surprised that the perintologist hadn't delivered Anastasia (instead, my obstetrician did the C-section). "They must have felt there was no way she would live," the nurse said, saying she understood why they would think this. "I've never heard of such a thing," she repeated. "I don't know if you're people of faith, but this baby is a miracle." We smiled and told her how very aware we were of that. "Only the Lord could keep her safe under those circumstances," she added.
As we watch other NICU moms and dads hold their babies constantly (or so it seems to us), or complaining that it will be a whole two weeks before they can take their baby home, we remind ourselves of all we have to be thankful for.
Happily, Anastasia is doing very well on the CPAP. Her heart rate, respiratory rate, and oxygen saturation levels are all quite good, and she is squirming around like she used to. She's up to a whole 2 1/2 lbs, too :) Here is Anastasia wearing her CPAP:
September 12, 2005
Yesterday, Anastasia met her great-grandma, and she got to be held by her mommy for the first time in a little while. The past few times I've tried to hold Anastasia, her numbers (oxygen and heart rate) have plummeted, and I've had to put her back in the incubator almost immediately. Last night, however, one of the nurses whose been with Anastasia since the beginning (and who has decades of experience under her belt) suggested I try holding her a different way.
Traditionally, when a parent does Kangaroo Care (skin to skin contact), he or she holds the baby vertically down their chest. But last night I held Anastasia horizontally. She still had her moments of low saturation levels, but when I suggested Anastasia wasn't tolerating the holding well, the nurse told me "Yes she is. Just make her breathe when she gets to comfy and forgets." So, when Anastasia began to breathe shallow, I rubbed her back or tickled her feet. (She really hates the latter...but it usually makes her breathe!) When this didn't work, the nurse would come up behind Anastasia and whap her on the diaper with one finger. This annoyed Anastasia no end (she'd wrinkle up her face, frown or pout, and let out a complaining cry), but it always made her breathe.
The same nurse also taught us how to give Anastasia massages. "She turns into a kitten when I do that for her," she said.
The nurse also told us she'd been present when Anastasia was being worked on by her neonatologist the night she was born. She described how the doctor intubated her right away, and how they had a very hard time getting her to breathe. She said Anastasia's lungs were so stiff (because they were under-developed) that when they tried to blow oxygen into them with a bag attached to a tube or mask, they could barely squeeze the bag. She said she looked at the doctor and exchanged a knowing glance that this baby wasn't going to make it.
But Anastasia surprised them all :)
September 14, 2005
Anastasia met her uncle yesterday, and continues to be squirmy and wiggly - good signs of better health. She is up to 2 lbs. 10 oz., and is gradually being weaned off the CPAP machine. As tiny as she is, she definitely recognizes her parents. Her "numbers" all go up when one or both of us visit her, and last night when her daddy walked into the NICU, she opened her eyes, apparently looking for him. Perhaps because my hubby has taken to "holding hands" with Anastasia (i.e., letting her hand grasp one of his fingers), she also looked at him and opened her hand wide, waiting for his finger to latch onto. We continue to be amazed at Anastasia's strength. When she's laying on her stomach, she can raise her rear end high, and can also lift her head repeatedly. Last night, she even lifted and partially turned her head...a pretty amazing thing for such a tiny baby!
September 16, 2005
Yesterday, Anastasia came off the CPAP machine and went onto the Vaportherm. Both machines are similar in that they offer some oxygen, but the Vaportherm offers less support (which means Anastasia is doing more of the work) and is probably a lot more comfortable to wear. The CPAP is a facial mask; the Vaportherm is just a set of nasal prongs.
My husband did "Kangaroo Care" (skin to skin holding, which has been shown to greatly increase the survival rate of preemies) with Anastasia last night. He is totally smitten :)
Our girl is doing a good job of breathing on her own, and has very few spells of apnea or dropped heart rate. She's sassy (complaining when we have to encourage her to breathe by tickling her, etc.) and is beginning to open her eyes more. She's also finally turning rosy pink, and is no longer the dark red "extreme preemie" color. She's putting on weight and is actually getting a little Gerber Baby fat. Today, she weighed about 2 lbs. 12 oz.
September 19, 2005
Anastasia now weighs and "enormous" 3 lbs. She's doing very well on the Vaportherm machine, and enjoys Kangaroo Care (skin-to-skin holding) every day with either her daddy or myself. Our girl is also now growing tiny little eyelashes and eyebrows, and is developing a curiosity about things. She will study a hand or a piece of fabric for a few minutes between naps.
Today is her first eye exam, something the nurses told us we don't want to witness. In all likelihood, the doctor will proclaim her eyes "premature," but they start checking eyes so early so they can catch - and fix - problems early.
Kangaroo Care with daddy.
September 20, 2005
Yesterday, Anastasia was going through periods of breathing well, but having oxygen saturation levels that were a tad low. When I asked the doctor about this, he said this could be caused by a number of things, including the fact that we're pushing her beyond what is natural for a baby who'd be 31 weeks tomorrow, if she were still inside me. In the womb, she'd be getting about 46% oxygen, he said, but in the hospital, she's getting between 29 and 34%. The doctors have a "wait and see" attitude at this point, but don't want to give her much oxygen, as this can lead to serious eye problems.
Fortunately, Anastasia's first eye exam was good. Her eyes are still premature, but the doctor said they seemed to be maturing in a healthy fashion so far.
Some of you have written to ask if I'm Kangaroo-ing as often as my husband. The answer is that I hold Anastasia skin-to-skin every week day, while my hubby holds her on the weekends. (He also took one weekday last week.) Most of the time, my husband's at work, and therefore there's no one to take photos, when I'm holding Anastasia.
Someone also asked if I'm breast feeding. Anastasia is still too young to suck well (let alone suck and breathe at the same time). Her time will come, though!
September 23, 2005
I saw Anastasia nearly die in my arms yesterday afternoon. She was having a spell of "As & Bs" (apnea and bradys), where she "forgot" to breathe, then her heart rate plummeted.
She's had such spells before, of course, but this was the worst one I've seen, and it was up close and personal because I was holding her at the time.
After only a few minutes of cuddling with my baby, her oxygen saturation levels started dropping...Then, suddenly, her heart rate dropped radically. I called for the nurse (who was already on her way) and tried to stimulate Anastasia with all the usual "tricks" (rubbing her back, poking her ribs, tickling her feet, thumping her diaper). The nurse tried repositioning her head, but Anastasia's body was already entirely limp and gray, and her face was blue blue. The nurse grabbed an oxygen bag and blew oxygen in her face. She was getting ready to "bag" Anastasia (put a mask over her face and pump oxygen into her lungs) when my baby started to come round; her heart rate went up and her oxygen levels slowly followed. She opened her eyes briefly, roused.
It took Anastasia several minutes to recover, and for about ten minutes or so, she remained very pale. This episode was followed by two shorter "As and Bs," where her heart rate and oxygen saturation dropped, but immediately came back up. When she had a third quick "A and B," the nurse and I agreed it was time to put Anastasia back in her incubator. I was only able to hold her for about ten minutes total yesterday.
The nurse suctioned Anastasia's nose, got a lot of gunk, then turned her onto her belly, where she tends to breathe better. (While in most cases, a baby sleeping on her tummy is at risk for SIDS, it's common for extreme preemies to do better on their tummies - and it's safe, too, since they're on monitors that track their breathing.)
It was a horrifying experience, and I don't think I'll ever forget how Anastasia looked in my arms: ashen and limp.
Fortunately, aside from this period, and another one later in the evening, Anastasia has been doing well. She's been on low oxygen levels and otherwise thriving. The nurses and doctor keep telling me the "As and Bs" are really common at her age, and that she'll outgrow them. It can't happen soon enough!
It does worry me, though, since she had increasing "As and Bs" right before she was diagnosed with an infection, earlier this month.
September 23 (part II)
This morning, we got the results back on Anastasia's "blood gas." This test looks at the oxygen in her blood, which is, according to the docs, at a good level. The doctors also ordered an increase in Anastasia's caffeine level. (Caffeine stimulates and helps preemies "remember" to breathe. The nurses also give Anastasia sugar water when they have to do something unpleasant to her; it helps her cope, and we joke that all we need to add is chocolate to the mix, and Anastasia can have mochas every morning, instead of breast milk!)
The extra caffeine must have helped, because as of 5 pm, Anastasia has only had one brady today. Unfortunately, I was holding her at the time, and her heart and oxygen levels dropped very suddenly. She turned gray and limp, but recovered fairly quickly without having oxygen blown in her face or mouth.
I just keep reminding myself that this is "normal" at her young age (only 31 gestational weeks). And then I welcome ten new gray hairs to my head!
September 24, 2005
Anastasia is doing well enough they've lowered her Vapotherm level again; it's now at 4, which indicates how many liters of air she gets from the machine. She began the machine at 7. She also gained 2 oz. overnight and is now starting to get a few baby fat rolls at 3 lbs. 6 oz. To top off the good news, she's now often breathing with far less oxygen. She's been down as low at 23%, but is often closer to 29%. Either number is excellent and an improvement...much closer to the amount of oxygen found in the average room: 21%.
But the biggest news of the day is that Anastasia has managed to not just lift her head (which she's been doing for a long while now), but turn it. She was laying on her tummy, with the right side of her head on her pillow. She then picked up her head and turned so she was laying on it's left side. We were quite impressed. Oddly enough, though, she seems to prefer sleeping with her head face down into her pillow, and if you move her head out of this position, she stubbornly moves it back.
She's still having bradys, but we haven't personally seen anything so bad as the one she had in my arms on the 22nd.
September 25, 2005
Last night was the first Anastasia mostly slept on her back; this is a tough thing for extreme preemies, as they find it more difficult to breathe in this position. But the nurses tell us she did quite well.
Our girl is a little over 3 lbs. 7 oz., and one of her doctors commented to my husband: "Your prayers may have helped." To which my hubby replied, "I know they did!"
September 27, 2005
Today, Anastasia weighs 3 lbs. 9 oz. and is about 14 1/2 inches long. She's doing well, and we're just waiting for her to learn to breathe more regularly, maintain her body temperature outside the incubator, and learn to eat without an NG (feeding) tube :)
For those who've asked, I've updated the FAQ page with info about Kangaroo Care and what determines when Anastasia will come home.
September 29, 2005
Anastasia was nearly 3 lbs. 11 oz. today, and every day I think she changes a great deal. Little by little, she's maturing into a baby that looks full-term. The nurses tell me that if all goes well, in a week or so Anastasia will be out of her incubator and in an open crib. I can't even quite imagine what it will be like to not have a barrier of plastic between my baby and myself.
Today, Anastasia had a big enough brady that the usual tricks (rubbing of her back, poking her, blowing in her face, or tickling her feet) weren't bringing her back. So the nurse pulled some of Anastasia's hair and pinched her ear to make her cry. It's horrible to see your helpless baby being treated this way...but, of course, the alternative (a stopped heart) is much worse. Happily, however, the ear pinching made her mad enough her heart rate went back up, and we pulled her out of the brady before she turned blue.
