Days 44 and 45
So you may have noticed we didn't send an email yesterday.
We begin the story with a mantra: "But it's all okay now."
Yesterday, I tried to keep a big secret. Yesterday was Naomi's Homecoming Day.
We left the hospital with much celebration, pride and a healthy dose of worry. The car ride home was completely uneventful. Naomi even seemed a little bored by it all.
After we'd been home for about an hour, it was time for her 5 o'clock feeding, which went fine, until time for burp. She just wouldn't give it. Nana asked me to check her out and we carried her into the kitchen where we get better light. She just didn't look right. We gently stimulated her, rubbing her back and feet, turning her over to see if there was any thing stuck in her mouth. We got no response. She turned more blue. William came up fom the basement, called 911 and we began CPR. William and I had just taken the class last week and Nana had taken it the day before. She coached me while I performed the recussitation and William explained the situation to the emergency department. After 4 rounds of breaths and compressions, Naomi spit up some formula through her mouth and nose and began to cry.
EMS arrived a few moments later. We explained what happened, they performed a quick look (Naomi at this point was pink and happy) and we (baby and momma) loaded into the ambulance. After we arrived at Rainbow Babies, they checked all her vital signs, which were perfect. We hung out there for a while and they contacted Hillcrest Hospital (where we've been in residence for the last 6 weeks) and arranged a transport over there. Naomi and I loaded up for our second ambulance drive of the day and met William, Lillian, Nana and Papa at Hilllcrest. Once again, Naomi checked out perfectly, if a little hungry.
She was readmitted to the NICU, where she'll stay for another 5 to 7 days. She must have missed her sister.
It was the most frightening time of our lives. But it's all okay now. It's all okay now.
We'll try again for homecoming around New Year's. It looks like both girls will come home with a monitor, which means that we might be able to sleep again.
I might skip emails for a few days; please don't worry.
Think about signing up for CPR classes. It matters.
In all sincerity and love,
Us
Day 43
Day 43 was another good one. It's hard for it not to be, really. William's on vacation, Nana came to visit, and we all spent the majority of the day in the hopsital visiting the girls.
They had follow-up ultrasounds on their hearts today and the official report lists Naomi's as "small" and Lillian's as "tiny". These are the high-tech medical terms. Any smaller, and they would have been coded as "eensy-weensy".
We've made some more progress on the nursery in the last few days. Lots of shuffling and moving furniture. Poor Roxy. We've been talking about her big suprise recently, the big change. Tonight, she followed us up and around the room, finally sitting on one of the little rugs. You could just see the joy in her eyes, "You guys got me my own room???"
Love to each of you,
us
Day 42
6 weeks today. It's another of those arbitrary milestones that still mean so much.
The babies are still doing marvelously.
Lillian's crossed the 4lb mark! Naomi's at 4lb4. I can't believe how much they've grown. They've already grown out of a few of their clothes. Soon, they'll be double their birthweight! Considering what they dropped to after birth, they already have doubled in size!
The car seat has been delivered so that the nurses can set them up for their test. We cheated and gave them all the answers. All they need to do is sit in the seat and keep breathing! We should have results in a few days.
The girls have moved back across the hall, but not for anything bad, just a restricted staff. There's a small enough number of babies to keep in the one nursery. The ladies are tucked away in a smaller, back section of the nursery, so it still has the peacefulness we were finding across the hall.
Tiny hugs to all,
Us
Day 41
So, in case you are suffering from update withdrawl, my apologies. We went to see our movie last night. Thanks, Mom Rand, for the recommendation for The Blind Side. Adorable and uplifting.
The girls had a great day again yesterday. A visit from Nana made it even better. They are still gaining weight in the open cribs The concern was that they would burn too much energy trying to keep warm, so that's a good sign. Lillian's knocking on that 4lb door at 3lb15, and Naomi's at 4lb3.
Naomi had a hearing test, which she passed. Several people have asked how they do this, as we are all picturing babies with headphones being asked to raise their hands when they hear a sound. Honestly, I do'nt know how it's done. There are sensors involved. That's all I can tell you. I guess, as long as they pass, I'm not going to get all researchy about it.
We're off to give the girls thier good morning kisses and then go spend Fake Christmas Morning at Nat and Amanda's (who came over and helped us kick in the rest of the ursery yesterday. We will actually have to use this room soon!)
Love,
Us
Day 40
40 days. And 40 nights. Thankfully it hasn't been raining the whole time. But, two by two, these girls are getting closer to home.
Lillian had a kick-ass day, gaining three ounces (!) and moving into an open crib.
Naomi's still holding strong, too. She had a bit of an episode last night, spitting up some of her feeding and dropping her breathing and heart rate during that spit up. Not a huge deal, but something to notice in an otherwise very smooth week.
Both girls had a RSV antibody shot today. RSV is essentially the virus that causes the common cold, but can be very dangerous for teeny babes. It is the number 1 reason that preemies are rehospitalized (and the reason that we'll ask you all to keep washing your hands when you visit the ladies.) This shot is not a vaccine, but a load of antibodies that we naturally carry around, but they haven't had the chance to develop yet. They'll get a booster every 30 days until winter/cold season is over.
William is happily on vacation (as are,most of the other teachers on this mailing list--Just a couple more days, Massachusetts!) and we are going to be prepping for an eventual homecoming. No dates yet, but we're much closer than we have been. Whenever they get here, it will be our Christmas. (All together now, "I'll be home for Christmas...")
Happy days (and nights) all around.
M, W, N and L
Day 39
In my distraction over the videos yesterday, I missed a few key updates. The girls hit 34 weeks of gestational age yesterday. Had they been born at this point, they might not have even spent much time in the hospital. The girls also enjoyed a visit from Grandma Rand yesterday!
Naomi fell 5 grams (1/6 of an ounce!) short of her 4lb mark last night, so we'll see if she makes it tonight. Lillian caught up a bit, coming in over 3lb10. They're both still eating great, growing lots.
Naomi's been moved into an open bassinet as of this afternoon and is maintaining her temperatre well. It's wild to just walk in and be able to touch her! Lillian's temp in her isolette has been turned all the way down, so she'll be following suit tomorrow or Saturday.
Several people have asked how we are doing, aside from the girls. Truthfully, as long as they're good, we're good. WIlliam's doing even better, since Christmas break starts tomorrow afternoon. We are brewing plans to go and see a movie for what may be the last time in a long while this weekend. Anyone have any reviews of Sherlock Holmes?
We hope that you are all doing well, too. Much love to everyone!
Us
Day 38
The girls are growing! Naomi's really making this a compettition, gaining 4oz in two days. As of last night, she was at 3lbs15, so she might cross that 4lb threshold tonight! She's 15.75" long, so no change there. Lillian's still gaining, too, but spends more of her energy being alert and awake. She's at 3lb9, and 16.5" long. I don't know if that's the real reason, but there's a marked difference in their alertness levels. I'm linking to new videos so you can see for yourself! (At least I'm trying to. Taking much longer than expected. May go to sleep and try again tomorrow.)
Day 37
Thankfully, today offers very little to report. The girls are eating and growing and being adorable. Today they were wearing their leopard print outfits in honor of their Great Granny.
We are waiting to get them into open cribs as our next step. Once they're in there, we'll look for them to keep their temperature steady and still gain weight.
In all the hubbub of their big move, the girls must have misplaced their birthday book. Belated wishes to their nephew, Matthew, and their Great Pop-Pop (does that make three Pops?). Kisses to you all!
Day 36
And they didn't even send out fowarding address cards!
When I called this morning to see how the night had gone, I was told the girls had moved across the hall. It's still a NICU, but smaller, and slightly lower key. It's staffed by the same nurses, but only holds 6 babies, so there's a lot less hustle and bustle. The nurse this morning said our babies were the healthy enough ones to move over there! It's a step in the right direction, certainly. And the girls get to see the third room of their lives!(operating, NICU, and this one.)
We took our Infant CPR class and discharge class tonight. CPR? Pretty simple. 2 breaths, 30 chest compressions. Repeat for 5 cycles. Now you're all experts. (this applies not only to infants, by the way. Anytime you give CPR, this is the pattern.) The discharge class, on the other hand, was 90 minutes of non-stop information. We may take it again! No, we have lots of this information in books and in our heads, it's just the first time we've really dared to think of it. It's all becming a little more real.
The girls are doing well, still eating lots. They changed the rules this morning to "ad lib" feedings. Up to now, they've been given 30ccs (1oz) per feeding. Sometimes you could tell from their actions, though, that they were still hungry. Eating their fingers, the edge of the blanket, our fingers, basically anything in reach. So an ad lib rule means they get to eat as much as they'll take. Both girls took 45ccs earlier this afternoon and evening! Hungry little birds!
It's been a long day, but a good one.
I wish I could put a scratch n' sniff baby scent here.
Love to all.
Day 35
Five weeks. Five Weeks!
Soon, you'll all have to get used to two terms: Actual (chronological) age and Corrected age. The girls are actually, chronologically 5 weeks old. Corrected age says they aren't born yet. That will be how we measure their accomplishments like sitting up and holding up thier heads and other milestones. Otherwise, we'll be measuring them by impossible standards. Corrected age will be as though they were born on their due date, so they've got some time yet before we start with that.
Little Lillian pulled her tube again today. The best part? They haven't put it back in yet! We're hoping her sister catches on to this idea soon, or the docs decide to help her out.
This feeding thing seems to be working out. Naomi's almost 3lb10, and Lillian's 3lb7ish.
Here's Naomi in the middle of this morning's feeding. Watch out, she'll eat your head!
Day 34
It's a good thing our babies are good looking.
How does such a tiny thing make so much stink? Oooowee! The high-calorie fortifier they use in their milk apparently makes for some nasty output. Really. There are times in which we feel the need to open the isolette doors and let one of them air out a bit!
The girls had an exciting day today, with a visit from Nana and Papa, who got to spend lots of time with babes in arms. We have pictures, but William took them on his fancy phone, so they're on facebook. (Granny and Pop-pop, I think this is leaving you out. Wanna join facebook?)
All the medical updates are still quiet and good. We'll keep it this way.
I hope you are all doing well!
Melinda
Day 33
A Happy Friday to you all.
The sibling rivalry was here in all its intensity today! This afternoon, just as I was about to leave my 'dayshift', I walked over to say goodby to Lillian. There she was with her eyes wide open, a sweet smile and her feeding tube in her hand. I was I'd had a picture of that moment. Such an innocent face, the little stinker.
When we returned this evening, we got the report from the nurse that Naomi was not to be outdone and had pulled her tube, in the middle of the feeding, no less. She actually had to be suctioned out a bit, as her food was still coming through the tube.
We're in big trouble, aren't we?
While the girls are eating most of their feeds by bottle, the docs aren't totally ready to give up on those tubes yet. And now that they've been so pesky today, they've earned themselves another layer of tape. Shame, because their faces are getting so expressive. Lillian was cracking me up tonight: eating her bottle, opening her eyes so wide and holding her hands up on the side of her face, like I was robbing her in an alley. We'll do video of a feeding here soon. (I can't email a video, much too big, so you're forced to see that on facebook.)
What did I report for weights last night? Lillian's at 3lb6 and her sister's almost at 3lb8!
Not that I would say this outloud and create a jinks or anything, but they've not had any bradys today. (Who said that??) It's amazing how much progress they've quietly made, sneaking up day by day.
I'm so proud to be their mother.
Love!
us
Day 32
I am feeling much better, especially since I got to spend plenty of quality time with my girls today. They have magical healing powers.
They are very hungry little caterpillars! As of this morning's rounds, they have decided to give the girls bottles at as many feedings as they can go. I think they've only been fed through the tube once today! I got to do two of their feedings and they eat like little champs. They are easy burpers, too.
Weight continues to climb, with Naomi at 3lb6 and Lillian at 3lb5. At this rate, they'll hit 4lbs before Christmas!!
I kind of like that these updates are getting a little boring. That's a good thing. There were brand new triplets in the nursery tonight and they are teensy. I remember vividly how crazy those first days seemed, with the status changing minute by minute and nurses always hoverig around. Tonight, we got to just put them back into their isolettes when we were done feeding them, change diapers and nestle them into position on our own. We just let the nurse know on our way out that they were all settled back in. Say an extra prayer or wish for those three tiny babes tonight. May our girls serve as good examples.
Stay warm, everyone.
Us
Day 31
Pictures, as promised. (The Academy Award goes to Aunt Pat for wardrobe design.)
I have not seen the girls today. I am proud of myself, as I have only called the nursery 3 times. William just got back from seeing them, and reports that all is well.
Upon leaving there last night, I was stricken with some evil flu/food poisoning insanity. After talking with the nurses, we decided that it would be best to keep my distance for 24 hours. I certainly hope it was food poisoning, so there is less danger of passing something to the girls. I haven't been anywhere except home and the hospital to contract any viruses, so that makes the most sense.
From my obsessive calling, I still have reports and they're still good. They have each had only one brady in the last 24 hours! They have taken more of their feeds by bottle and are getting faster at it. William got to feed both of them tonight. Naomi is currently at 3lbs5oz, and Lillian's at 3lb4.
I'm going to sleep now, so the time between now and seeing the girls goes faster. Oh, how I miss them.
Day 30
Today is our daughters' one month birthday.
It feels like its gone by in a flash, but I also have a hard time remembering what life was like before they came.
They are still doing remarkably well.
I forgot to mention yesterday that they had their third head ultrasounds and all is still clear. While we're not completely out of the woods for brain bleeds, we are definately at that beautiful, dappled edge of the forest where we get to take deep breaths and stop looking over our shoulders.
Lillian is now off her canula and breathing completely independently. Yay!
They each took two whole bottles today. This is a key step toward getting them home, so keep rooting for them in this. I got to feed both girls this morning and it was wonderful.
I have pictures from today, but my camera battery is dead and I want to sleep before it will be done charging. Tomorrow, I promise. On facebook ,there is a new one from tonight on William's page, thanks to his fancy new phone. It makes me happy. (The picture, not the phone, but that's not so bad either.)
The girls would also like to wish a happy birthday to their nephew, Payton, who turns 6 today!
Day 29
Good news:
Lillian's PICline is out.
They've turned her canula down to 1 Liter of pressure.
Naomi took three of her feeds entirely by bottle today.
Lillian to entirely one (her first try!!)
They both had incredibly stinky poops.
Lillian is now 16.5 inches long, Naomi is just over 16. (Growth of an inch, plus a little.)
They are already 3lbs3oz. This is about an ounce a day!
They are astounding and wonderful.
Love to you all.
M, W, L and N.
Day 28
Get out your tuning pipes and warm up your singing voices; the string of birthday milestones begins. 4 weeks today!
I know I just told you about 3 pounds, but as of an hour ago, they're both almost 3lbs3! Really cruising along. We'll put them in some of their outfits this week and get pictures out. As for this week's photos, if you haven't checked facebook, I did manage to post the videos to my profile. It's a long process, but now that I know how to do it, it will be easier. William has a photo up from tonight, too, on his profile. It's a good one!
Lillian's PICline is still inher arm, but not actually connected to an IV. So, she's getting all her nutrition through feedings. I imagine they'll take the line out tomorrow. Today, she thought it was a nifty pacifier handily attached to her arm. And speaking of pacifiers, I gave her one tonight while I was holding her and the nurses could hear the sucking from across the room!! ( For Dad--"This baby sucks. What else you got??") They also plan to turn her canula down another notch tomorrow. As long as everything goes smoothly, the bet is that she'll be off of it entirely by next weekend.
Naomi is doing well, too, just steady as she goes. Her heart rate has been a little high, but nothing crazy. They've held her caffiene dose for the tonight, just to see how she does. (They give this as a nervous system stimulant, to kep heart and respiratory rates up. If they do it on their own, the docs can start weaning the caffeine. Decaf only, ladies. Especially before bedtime.)
The girls helped me with my bookclub discussion this afternoon, as we were reading The Glass Castle, a memoir about a crazy family. And far more crazy than any of us. Damaged crazy. It was definately different reading it as a parent, I think. This perspective is still very new for me, but it became more real as I sat at their bedsides and read, looking between the two girls and not having to imagine what it would be like to be someone's mother, just knowing. I sometimes opened up their isolette window as I was reading to assure them that I would never do anything as awful as the parents in the book. It's a worthwhile read, if your interested, but hard to believe that it's nonfiction.
Much love to everyone. Hope you are all well,
Us
Day 27
I lost a day in there somewhere. Again. Don't know where or how, but I'm not sure it matters.
We have, count them, TWO! Two three pound babies, Ah.Ah.Ah. (Um, that last line is better if you say it with a fake Transylvanian accent. And if you're purple.) Lillian did indeed make it by midnight last night, so they both hit three pounds in the same day.
They are really starting to look different, and if I'm smart enough to install the driver for our new video camera, I will be posting some videos on facebook forthwith. Those of you (most, I think) who are linked up with us there should check them out. Anyone not on facebook, you'll have to keep waiting for the blog, I'm afraid.
We've noticed that Lillian has a little dimple/dent in her chin, just like her dad. All these features that appear as they put on a few ounces are really incredible.
Both girls had eye exams yesterday, and by all reports, things are premature, but normal. Retinal blood vessels are not fully developed at birth, premature babies are even more at risk for complications from something called Retinopathy of Prematurity (ROP). If the blood vessels over-develop, they can force the retina to detach from the globe of the eye.(Apparently, this is why Stevie Wonder is blind.) But, with careful monitoring, this is much less of a risk. Also, they used to way overdo the oxygen treatments for premature babies, which led to more of this. So, they will have more exams before they leave, but so far, so good. We've also done informal eye exams when we forget to turn the flash off on the camera. By their reactions to that, both girls see just fine. Except for those temporary, floating purple dots.
They continue to be totally adorable and irresistable.
I'm off to decipher the instruction manual for the camera.
'Night.
M+W+L+N
Day 25
Oh, so late. So sleepy. So good.
Work friends threw me a shower tonight (was supposed to be the week the girls arrived!) which was fabulous. It was nice to see these pople that I haven't seen in a while. They were so excited to hear about the girls--and there was such good news to share!
We have---are you ready??? A three pound baby!!! Naomi was first over the line, hitting it exactly at 1361 grams. 3.00lbs. Lillian was just edged out at 2lb15.5oz. They hadn't weighed her by the time I left tonight, but I won't be surprised to hear that she's made the mark as well. It's a rather arbitrary milestone, but it means a lot to me. And percentage-wise, it's such a big gain. To have been born at 2lb5, lost down to 2lbs2, and now up to 3 whole pounds? Awesome.
Speaking of awesome? Lillian is off the cpap, on the canula. I don't know where the big change of heart came from with the doc, but I'll take it. Actually, I do know, because I asked a lot. Her murmur is sounding "softer". This doesn't necessarily mean smaller, but it could. It's progress. And, in other respects (bradys) she's been stable enough to assure the staff that she was ready to try. So far, so awesome. It's fantastic to see her beautiful face.
I got to feed Naomi with a bottle today! She took 8 whole ccs, which is about a third of her feeding level. It was another one of these really trivial things that felt like a real Mom Moment. Once Lillian's air pressure comes down a little, we can get her started on the bottle, too. But, trying to manage a bottle feeding and the air pressure would be too much for her to coordinate.
I know there are a lot of exclamination points in tonight's email, but I'm feeling pretty great about the girls and their progress. I know you all share that, too, and that's also awesome. Thanks for that.
(On a side note, our Maple football players got a little bit stomped in tonights championship game, but they made it there, and that's saying quite a bit. Go them.)
Sleep now.
Love.
Day 24
It's late already and I'm tired tonight, so this will be short, but all is good.
Naomi is now without her canula, so the only tube she's got is her feed, that goes into her nostril. And, she took 4ccs from a bottle today! It took her a couple of tries and she desatted (oxygen) twice, because she couldn't coordinate the suck, swallow, breathe rythym, but it's still encouraging!
Lillian's still got tubes. Cpap, feeding, and IV. But, IV might not be much longer! She's almost back to full feeds, so once we reach that milestone, she can lose the PICline, too! I asked Doctor S. today what he thought about the cpap timeline, and I felt like one of those pageant moms for the first time. "Let's not push her too hard", was really the message I got. He envisions no big changes until after the weekend. But, she was visited by the occupational therapist today (N. will see her on Tuesday, as this is standard protocol.) and she responded very well to all the moving about. The OT will start teaching us some positioning and massage techniques that should be helpful.
Papa came out for a good long visit today and was very successfully charged with the job of calming LilIian when she gave her little fusses. Both girls got their kangaroo time in, too. It seems like that's really going to be a daily thing from now on. I can't wait to just nuzzle them whenever I want. But, putting my head in that isolette is only going to lead to trouble. Especially when I get stuck and can't get back out!
Send out a good vibe for Maple Heights football team, who plays for the state championship tomorrow! William will be there, freezing his butt off, but enjoying every minute of it, I'm sure.
Love to you all!
Day 23
The girls hit 32 weeks gestational age today. (At some point soon, this birthday/milestone thing is going to get out of control! Next week, we'll hit 4 weeks on Sunday, one month on Monday and 33 weeks gestational age on Wednesday. Get out those trick relighting candles, people.) This is the milestone we were aiming for on bedrest. Missed that one, didn't we?
But, here on the outside, things continue smoothly. Last night the girls broke the 1300 gram mark, putting them both at 2lb14oz. The nurses are all amazed at how close they are staying in their growth--within 4 grams! (There are almost 30 grams in an ounce, to give you an idea of conversion.) Wasn't I just telling you how they passed up 1200 a few minutes ago?? I'm thinking we'll cross 3lbs by the end of the weekend.
We had good visiting time today, kangarooing both girls. They really do visibly enjoy these times, and it shows on the monitors as well. Heartrates level, breathing is more regular and oxygen saturation levels stay high and steady. They are usually alert for the first 15-20 minutes and then slip into a contented sleep. Even after they are jostled back into their isolette, they crash right back into a deep sleep.
Hoping that all of you and your endeavors are going well,
Us
Day 23
Hello, all.
Today was another good day. Both girls only had 3 bradycardia episodes, which is really down, especially for Lillian. Apparently, she didn't want surgery either!
Their weights really jumped up last night, and it may be from water weight, but we'll hope that it's valid. Lillian's at 1290, with her sister close on her heels at 1286. Both of these translate to about 2lbs13.4oz. We're thinking about flirting with 3lbs!!!
I brought home a new Lillian-scented blanket tonight for Rox to sniff at her own, leisurely pace. She's been quite interested in it. (Hell, I might steal a sniff or two!)
Selfishly, I got to kangaroo both girls today. I stole all the time because William had class tonight. He still managed to sneak in a goodnight visit, though, because he's superdad. The girls were delighted to see him, of course, opening their eyes and looking around. They've both been making overtures at sucking their thumbs, too. I saw Naomi get it today for just a few seconds, but in her excitement over the success, she lost it again.
I'm already anxious to see them again tomorrow!
Love to you all,
Us
Day 22Hello, everyone.
I wanted to send tonight's update early, as I know people were anxious about surgery updates. As of right now, surgery is on hold. (Collective exhale here.) The echo shows that the PDA is still there, but smaller. She is stable, and doing well, so they feel that it isn't necessary to rush into a surgical fix. They'll keep a close eye on her, though, and may do an x-ray later in the week to see how her lungs look. This probably means more time in the cpap and PICline IV, but that's ok, too. We'll just do what she needs.
Naomi is still cruising along steadily and has broken the 1200 gram marker. She was delightfully alert today for part of my visit, darting her little lizard tongue around and occassionaly squawking for the sheer joy of it.
As you can tell from the attached picture, I got to hold both girls at once today!! It was just fabulous to look back and forth between their two amazing faces. As their Nana said today, we can't wait to watch them get to know each other, as well as the rest of us.
The girls would like to send out a Happy Birthday to their Aunt Amanda today, too!
Hugs, everyone.
Day 21
The girls were serenaded with Happy Birthday for the third time today! We also had our inaugural reading of Goodnight Moon tonight. I've left it there and intend to read it to them at the end of each of our evening visits. They seemed to enjoy it, starting off wide awake and blinking a little longer with each turn of the page, until they drifted off. Just as it's supposed to be.
Today was a nice day, as we got to kangaroo both girls this morning for a long time. William had Naomi for just over 2 hours! It's such a beautiful part of the day. It's so easy to just be there, muttering to them, humming, or just sitting quietly, passing the time.
Doctors are talking like Lillian's surgery is becoming more of a reality. It's scarier now that we're talking less "if" and more "when", but as they've explained, as surgeries go, this one is pretty routine. She'll have another heart echo done tomorrow and they'll use that to make a final decision. Word is, once they've made the call, she'll be on the schedule right away, so this might happen as soon as Tuesday. I'll definately give the update tomorrow. I had a nice long talk with her this morning and told her that whatever she needs, whatever she decides, will be right. I don't like to think of our little baby and surgery in the same sentence, but if that's what it takes, we'll be ready.
We're making progress on the blog situation. Just need a catchy title. Any suggestions?
I hope all the Thanksgiving travelers made it home safe. How long till we can get together again??
Love to all of you!
Us
Day 20
What a whirlwind of a weekend!
It's been great visiting with family, and still making time to see our girls in the nursery. They are doing quite well. We got good kangaroo time in this morning. That always makes us feel better, too.
Lillian completed her third dose (second round) of ibuprofen, but they are still hearing quite a clunker of a murmur. Sometimes, though, this can mean that it has shrunken. (Think how small your lips are when you whistle, versus when you sigh.) The docs intend to do another echo on Monday to confirm the size and severity of the PDA and decide what comes next. In the meantime, she's still kicking up quite a fuss. They have restarted her feeds, though, so she should be a little mollified.
Naomi is also doing well. When we went in this morning, we caught her in the middle of her escape plans. Seriously, she had scootched herself all the way to the top of her isolette, turned sideways and continued scootching until her little head was practically against the had window of the isolette. We have a little Houdini on our hands!
The Weatherlow-Miller-Smith clan has spoiled us all a bit this weekend, so we'll soon have video to share with all of you! I hope you find it as captivating as I do to sit and stare at these ladies while they smack thier lips and do "jazz hands".
Love to you all!
Us
Day 19
Happy Turkey Day!!
We loved hosting our first Thanksgiving here tonight, and very much look forward to the girls joining us for the next one.
Tonight, just enjoy the pictures! (Lillian is still , obviously, on the cpap. I wish you could see how adorable her cheeks are.)
(For those of you who are fact junkies, Lillian's topped 1200 grams!! At 1205, she's between 2lbs10 an 2lbs11. Naomi's not far behind at 1180, which is between 2lbs9 and 2lbs10.)
Our thoughts go to all of you that couldn't be around our table tonight. We raised a glass to you.
Hugs and Kisses,
Us.
Day 17
Evening, all.
The attached picture is a shout out and salute to my bookclub members who, last weekend, threw a book shower for the girls. This has been the pattern for our book club babies (Seems like we're not always reading--Lillian, Naomi and the two others currently baking bring us to 9 babes to two years!) and what a fabulous idea. There are some classics and some great new stuff, too. I can't wait to share them with the ladies.
Medically, we continue our crazy two step dance. Lillian's going for another round of ibuprofen, as her heart murmur seems to be really clunking again. They did another ultrasound on her PDA is looking large. This means we are holding feeds again for three days. I think she's quite unhappy with this plan. She still gets all her nutrition through the IV, but her belly feels empty--you can hear it rumbling through the stethoscope. They'll keep a close eye on her kidneys again, and hopefully this will do the trick. This may expalin why she's had some difficulties recently.
Naomi's still doing well, but they increased the flow on her canula from 1 liter to 1.5. This seems to have been a good stop to her apneas and bradycardias overnight. She's up to full feeds, taking nothing from IV, which is great.
We got some good baby time in tonight, kangarooing both girls. William had Naomi out for almost two hours! I heldLillian, which I needed. We just took her off the cpap for the holding, and she did marvelously. She and I had a long talk about her heart thingy and about how Chris the respiatory therapist is much too old for her.
I hope everyone enjoys their Thanksgiving tomorrow (or Friday.) Give your friends and family an extra squeeze.
M, W, L, N
Day 16
16 days! Hard to believe, really.
Both girls had a pretty good day.
Naomi's PICline is out--one more step to being an untethered baby! She's up to 17ccs every three hours for feeds, but we'll have to start making some of that formula, as she's outpaced her dear old mum. She's had some bradycardias and apneas today, but nothing excessive. They think she may be having some reflux, which is very treatable.
Lillian's still on the cpap, but her belly puffiness has gone down quite a bit (with help of another suppository last night. She almost got dear old dad tonight, too, but he was saved by a well-placed wipe. I'm starting to think WIlliam has all the fun. Remember, Naomi peed on him the other day!) They've restarted her feeds (only a tiny amount, but enough to get her system moving). She's been acting hungry, too. Chomping her lips at things and squirming.
Both girls appear to have a crush on Chris, the respiratory therapist. Whenever he comes around, they flutter their eyelashes and blink a lot. Could be the head massages. I may start fluttering my eyelashes for that.
Tonight, I began bribing the staff in earnest. We'll see if the pumpkin cookies get us a little closer to extreme family time on Friday.
Goodnight, all.
Day 15
Better than yesterday.
Naomi is still being relatively uncomplicated. Her PICline is still in, but I think it will come out tomorrow. She's also being weaned on her nasal canual air flow, which just means that they've turned down the air pressure. I'm knocking on rabbit's feet here, but she should come off it within a few days. We had some great open eyed alert time tonight. She definately knows how to keep us from leaving.
Lillian had fewer bradys today, but still a handful. She's still on the antibiotics, but the blood cultures haven't finished yet. (The lab also hasn't called in a frenzy with 24-hour results. This is good.) They're holding her feedings tonight, as her belly's pooched again, and there was some green goop in her belly. They did another xray, just to make sure, but it just shows gas--the pressure from the cpap fills her little belly with air. She's also due for another stool, which will relieve a lot of what she's got going on. This girl just needs some prune juice and we'll be fine. In more exciting news, though, she's lost her umbilical raisin! Her naked belly button is just begging to be nuzzled. Soon.
It's hard to be patient.
Day 14
Two weeks! It's hard to believe they've been here that long.
Today, we had some successes and some setbacks. Naomi cracked 1000 grams last night and is back to her birthweight of 2lbs5oz. Lillian is roaring ahead at 1150 grams--nearly 2lbs9oz!!
Lillian's great growth must be taking all of her energy, though, as she's had a rough 24 hours. Her number of A's and B's (apneas and bradycardias) were significantly higher last night and this morning. This afternoon, they made the call to put her back on the cpap once again. As much as I hate hearing this news and seeing her little head all muffled up again, it really is a small thing. She needs the help and we can give it to her. It's not a ventilator, it's not oxygen, it's just a flow of air that keeps her breathing more regular. (Can you tell I've been coaching myself through this all evening?) They've also started her on some antibiotics as a preventative measure, since infection can be one of the reasons for an increase in the A's and B's. Her blood and urine have been sent out for cultures that will be observed for 48 hours. If those are negative, the antibiotics will be discontinued. They did a quicker blood panel that came back clear, but the cultures will give a more accurate, complete picture. This also means that her PICline will stay in for at least a few more days.
Please, don't worry too much. I know it sounds like a lot, and it makes me worry too much, but these are small hiccups. The staff seem relatively unconcerned and continue to assure us that the girls are both doing just fine. Better than fine.
Tonight, we took some time to join in a "family of friends" Thanksgiving dinner at Nat and Amanda's. It was wonderful to socialize like normal people for a little while and enjoy the company of good people. One couple in attendance had delightful 3 year old twin girls (and a 2 year old sister!) and it was lovely to see what our girls are headed for.
Sleep beckons.
M.
Day 13
Lucky 13. Their second Saturday.
Today, Lillian and Naomi met their great-grandparents. It was a thrill for everyone. (Well, we assume so. The girls slept through most of it.) We had a full house, as Nana, Papa, Granny, Pop Pop, and Grandma Rand all came out to visit. They had to switch on and off, as we are only allowed four people total in the nursery at a time. It was still wonderful to have so much family gathered together.
Medically, it was another smooth day. Naomi had zero bradycardia and apnea episodes. This is great! Now, if she'd just cross the threshold of 1000 grams. Lillian is growing, but had 12 occurences of bradycardia. I am still assured by everyone, nurses, doctors, respiratory therapist, housekeepers and cafetieria workers, that this is totally normal preemie stuff and once they get a little bigger and a little older, we can look for it to diminish and eventually stop.
The doctors think they may be ready to remove the PIClines as of Monday or Tuesday. As hard as it was to get them in, it's very encouraging to think they might be ready to shed another support. This means that they would take all their feedings by tube, in preparation for bottle feeding around 32 weeks. Wow!
I hope that all these updates will continue to be this smooth.
I hope that you are all well.
M
Day 12
No big changes today. This is preferable.
The girls would like to send out congratulations to several amazing people on their update list. First, Uncle Brad, on rocking Providence during the opening night of To Kill A Mockingbird. They can't wait to give you a standing ovation. Next, Papa JD on passing all of his flying tests so far and qualifying to solo fly completely independently. They have not yet agreed on a destination for their first flight, but Paris is lovely in the springtime. Finally, Uncle Jim and Aunt Joanne have almost completed their new home and it looks like it's just begging for a visit from very energetic twins.
We hit a new milestone today. Naomi peed on her dad for the first time ever. Sadly, we did not have the camera ready in time. She did look pretty pleased with herself, though.
Lillian is trying to tell us to play the lottery, as her weight has been steady at 1120 grams for three days in a row. Pick-4 anyone?
Medically, they both had head ultrasounds yesterday, their second, and it is again clear. There will probably have at least one more before they're discharged, but this is a great start.
Lillian had an xray on her belly today, as it was distended after her morning feed. But, during the xray set-up, she delivered a blowout poop, and all was well again.
Tomorrow, the great grandparents will be smuggled into the hospital (H1N1 has made the visiting rules incredibly strict.) and, in preparation, the girls were practicing their tapdance routine all day long. Seriously. Lots of alert, open eye time and vigorous kicking. As soon as we can find some very tiny gold lame' outfits, we'll be ready for Broadway. We're also going to have to work on the OH-IO in preparation for tomorrow's big game. They're great at the H. (Which really just involves throwing your arms straight up in the air) O is proving to be a little problematic.
Goodnight everyone. Be well.
Day 11
Happy Thursday!
Both girls are back to the nasal canula, off the cpap. This is, of course, progress. But, this time, I am aware that it is not writ in stone that they will stay this way.. Basically, we have to challenge them occasionally, but sometimes they'll stop and let us know it's too much. So, we hope they are ready, but if not, we can always revert back to the cpap. It's currently hanging by their beds to ward off any evil spirits.
Bradys (heart rate dips) were pretty scarce today, still. Naomi had two right before I left this evening, just to give me more gray hair, but nurse assured us that it's still normal for them to do this, and it's not like they're going to rush to put her back on the cpap.
Both girls are still moving up on their feedings--Lillian's at 5cc every three hours and Naomi's at 7. They'll move to 6 and 8 as of 2:00 am. Nurse Margie informs me that dark beer has been known to increase milk production. The news just gets better every day. Weights are still pretty consistent, but they'll be heading up soon. Once they get rolling, the increases should be rather noticeable.
We are getting a little braver in assisting with their hands-on care. Little things like diaper changes, mouth care and positioning make us feel more involved and less like spectators.
Both girls had some very alert time in this evening's visit. Eyes wide open and looking around, little lizard-like tongues poking around. They respond to the pacifier a lot when they're like this, too. It's awfully hard to walk away from them when it feels like they're looking right at you. So I didn't, not until they fell asleep. (The hospital is currently under construction and part of what they're building is a new Level III nursery. Apparently this new version will have private rooms for each baby, where parents can stay 24 hours. Not that we can't now, it's just less comfortable in a big, noisy room. I know that we need to rest, too, but I'd sure like to be able to do it there.
Speaking of rest, that's where I'm headed. I look forward to seeing some of you soon for Thanksgiving. Others, we may have to wait a little longer, but we are looking forward to it nonetheless.
M (and W and N and L)
Day 10
It's hard to believe we're in double digits already. The girls hit 30 weeks gestational age today.
It was another smooth day. I got to the hospital later than usual, since I was waiting for the gas man to come and read the meter. I didn't freak out on him too much. But, the girls forgave me for being late.
Both girls are now back off the lights. They'll do bloodwork again in the morning to make sure they can stay off.
They're still on the cpap, but having very few bradycardias and apneas.
Feedings are still going smoothly. Lillian aspirated a little bit of it back overnight, so they'll hold her increases to every 24 hours instead of every 12. Naomi's already up to 5 ccs every 3 hours and will go to 6 at midnight. Hopefully they'll put on some weight soon.
They are scheduled for a follow up head ultrasound tomorrow to make sure there are still no bleeds on or in their brain. This is another one of those completely terrifying-sounding things that is apparently normal for preemies. They had their first scan at day 3 and it showed nothing, so we'll keep hoping for that.
We got to kangaroo both girls tonight again--William had Naomi (I'd snuck in a visit with her earlier this afternoon) and I had Lillian. As usual, they both loved it, totally relaxing and just melting into us. It's the most calming thing in the world, for all of us, apparently.
Thank you all for your thoughts and well wishes. It will be a big part of what sustains us through this very long process. That, and new baby smell.
M
Day 9
Evening, everyone.
I didn't send a voume two after our evening visit last night. It was a good visit. When they change the girls over from the cpap prongs to the mask (to prevent skin breakdown), they get to spend a few moments out of the velcro helmet thingy. The respiratory therapist showed us how to massage their heads while it's off. The girls obviously loved it. They had thier eyes wide open and were visibly relaxed. It's great to be able to show them that not all touching has to be annoying or medical. And, just like holding them, it makes us feel just as good.
Lillian was on hold for her feeding until she had a stool, so they gave her a little help in that direction. Well, she sure came through. Three times, apparently. So, they've started this girl on feedings, too! Not only is the breastmilk good for them, but with a regular pattern of feeds and stools, they should be able to clear out more of the bilirubin and get out from those lights. And, they'll put on more weight. Lillian's already at 1110 grams (2lbs7oz!!, a bruiser compared to her sister at 990--2lb3oz). For now, they plan to up their feedings by 1cc every 12 hours. Lillian's already at 2, Naomi's at 3. They seem to be taking it well, and digesting completely.
Today was, all in all, a smooth day. Still on sipap, still on bilirubin lights. But, far fewer bradycardias and apneas. Naomi has had zero in the last 24 hours; Lillian had four before 10 this morning, but only 1 since then.
Nana came to visit them today and got to hold Lillian for the first time!
William and I went up this evening and got to help with more of the routine tasks. It's nice to do more "normal" parent stuff. Ask me a few months if I find changing a diaper this exciting.
Already looking forward to seeing them tomorrow.
Love to all of you. (and visions of tiny, squeaky hiccups.)
M
Day 8
I've realized I sent yesterday's email titled Day 7, and the one the day before that. I suppose the first Sunday should have been Day 0 or somesuch craziness, but we're just going to have a little daylight savings moment and call this Day 8.
You know what's cute? A tiny baby with squeaky hiccups. Seriously. I try to feel bad for her (mostly Naomi gets them) because it must be annoying, but I can't help the giggling.
Today's updates are pretty repetitive. Both girls are back on the cpap, as expected. Lillian's still hada couple heart and breathing dips, but much fewer. Naomi has had zero. As much as I hate to see them strapped back into the scuba masks, I get it. They still haven't reached even 30 weeks. This will really help them with all the other growing and healing and developing they have to do. These little girls have a lot of plates to spin right now.
I told Kate and my dad this afternoon that I'd love to see the doctors all stand around thier isolettes and write articles in medical journals about these amazing babies who have disrupted the status quo with thier miraculously fast-paced progress. But, I will try to be more realistic. Slightly.
Growthwise, Lillian seems to have grown a 1/2 inch! Naomi hasn't sprouted quite as much, but she's still moving forward.
Both girls were to get a new echocardiogram this afternoon/evening to have a look at the PDA in thier hearts. If Lillian's looks more closed, they'll begin feeding her this evening. If Naomi's is still not progressed as much, they may elect to have her begin the ibuprofen treatment.
I got to change Lillian's diaper this afternoon. Mercifully, it was not her first stool! It was nice to have a more normal mom moment.
We're headed up there in a few minutes to spend the evening with the girls. Enjoy the pictures! Naomi is the one who looks like she's smiling (probably gas!) and Lillian is the one sacked out and drooling on her forearm.
Love to you all!
Day 7
As a special one week birthday present for the girls, I am going to sleep early (ish).
So, highlights:
Lillian did get her third dose of ibuprofen.
Naomi had her first stool. By all reports, it was ginormous.
Both girls are back at (L.) or near (N.) their birthweight.
Naomi is still taking her feeds well. They'll probably start Lillian on 1cc every 6 hours tomorrow.
Naomi is back on the cpap breathing apparatus (scuba mask). This is a minor setback, nothing huge. The analogy given me by the doc was that she's been running at sprint pace for a few days with no support, so she's just a little tired. This is probably why we've seen an increase in the bradycardia and apneas. I would venture to guess that they'll put Lillian back on tonight or tomorrow morning as well.
They were a little worried about possible infection for Naomi as a cause for her heart and breathing pauses. This is Big Scary. Infection is our #1 enemy. They took blood and sent it off for analysis. First results are clear. They'll watch the culture for another 24 hours, but things are looking good. Giant sigh of relief.
We got to hold both girls tonight, which is really the only news that matters. They say this contact is very good for the babies, but I can tell you it does a whole lot for Mom, too. We each had one girl out, both at the same time, for over an hour, just in rocking away in the glider chairs. Mmm. So happy.
I do have more pictures but this was supposed to be a short thing. Notice how I couldn't maintain the list format??
Love,
M, W, N and L.
Day 7
In 12 hours, our girls will be one week old.
It's all still a little unreal.
We got to visit today with Nana and Papa, but didn't get to hold them. As much as that's a disapointment, it's just as amazing to put a hand on their heads, or feel the squeeze from tiny fingers. Or, just stare, slack-jawed, through the isolette at these litte creatures and think about how they've turned your whole world upside down.
Medically, this was a pretty smooth day. Last night's PICline insertion was not successful on either girl. The catheter went in fine, but the veins collapsed. Attempts were made again this afternoon, and, finally, both girls have their line in place! Lillian's had to be adjusted this evening, but is now in a great placement. These PIClines can stay in place for about 21 days, and hopefully we'll get them to full oral feeds by then.
They've removed Lillian's umbilical line (leaving a sad little sticker removal/belly wax mark), which would have started to deteriorate here shortly.This also scoots her one step closer to being fed some breastmilk, as there is less interference in her belly. Naomi is still being fed 1cc at a time (picture a toothpaste cap) but they've stepped up the frequency from once every 6 hours, to once every 4, and now to once every 3. We're still waiting for something to make an appearance at the other end. She's peeing like a champ, but no stool yet. They can administer a glycerin suppository if things get desperate, but we're nowhere near that yet.
Both girls are still dipping heart rates (Bradycardia) and oxygen (Desats). These are reffered to as Bs and Ds. But, they've backed off on the pressure on her nasal canula and she's tolerating it okay. They might step back up, and consider replacing Naomi's at a low level, just to see if that decreases the frequency of their B and D episodes. It's good to see them make progress, but we can't push it too fast.
Both girls are off the grow lights. They'll pull blood levels again tomorrow morning to make sure they stay that way.
As mama, I have assigned the girls chores each day. Things like, "pee a lot", "get that PICline in, young lady", and "quit dropping your heart rate just to mess with your mother." Their current job is to steadily gain weight. They have dipped since birth (normal) but both are back up to 1000 grams. Naomi is just barely and Lillian is at 1030, I think. This puts them just over 2 lbs. 453.6 grams per pound, says Science Teacher/Dad. They've got to pork up a little bit to fit into the amazing wardrobe shipped in by Aunt Pat! Seriously, I can't wait to take pictures of them in these little things. You should see the hats. The hats make me tingle.
Well, I've got to start writing these missives earlier, because I get so tired that I can't remember if I've covered everything! If I've neglected some detail that you are chewing your nails over, please let me know.
Any other opinions about blog format vs. email?
Day 6
Hello, everyone!
Before I sum up the day, how would most of you feel if I tried to convert this to a blog format instead of a daily email? It would mean you could scan back through older entries and see photos without downloading them. I don't know how to do it yet, so there's no immediate danger, but let me know what you think.
Today was my first full day at home, and I really do miss this almost instant access to the girls. We're only 20 minutes from the hospital, but that's farther than the 40 feet I was shuffling down the hall.
This morning, William and I got to sit in on the Great Roundtable Discussion of Medical Personnel as they went over the details for the girls. They were quite good at stopping to explain details as they got muddy.
Here are the basics:
Lillian's bilirubin levels have dropped enough to come off the grow lights again, which also means no squishy helmet and sunglasses. She's always much happier that way.
She did not get that 3rd dose of ibuprofen, but her output increased quite a bit. They'll monitor for the rest of the day/night and see about finishing up tomorrow. They seem to think that things are headed in the right direction with the heart, though, as the murmur is a little quieter and her oxygen dips are slightly less frequent. However, she seems to have substituted this with heart rate dips. I think she just likes giving her mother gray hair.
Naomi has been taken off the nasul canula completely, since it was often observed in her mouth or on her forehead with no adverse effects. So, she's breathing completely without intervention. This is fantastic, but we know it might not be permanent, too. She's also picked up the little heart rate game that her sister invented. Seriously, now might be a good time to invest in a hair color company.
They removed the PICline from Naomi this afternoon, as on Xray, it was pointing too closer to her spine. She still had her other IV line in , so that was good. They will try again tonight, this time with both girls. This will be attempt 3 for N, 1 for L. While I don't like the idea of them getting stuck so much, these lines are much better in the long run. Lillian is still running on a line into her belly button, using the umbilical artery, but that will start to disappear here shortly. So, I'll call up there in the middle of the night to see how those line insertions went.
On to happy, warm, squishy news. We all got to hold both girls again today, with Papa JD making a guest star appearance. The photo is attached to the other email As has been their habit, the girls were just as happy as could be to be in someone's arms. Maybe it's just coincidence, but their numbers and monitors are always steady and superb when we're holding them. I managed to hold both of them today without blubbering at them. My next wish is to hold them both at the same time, but they're hooked up to machines on opposite sides of the isolettes and those tubes only go so far. We'll have to see if it's possible. I wonder if they're aware at all that the other one isn't there.
The sleepiness is taking over, so I'll sign off. Love to all.
M.
Day 5
Guess who came out to play today? (See picture!)
I am typing this email from my couch, so that's new. Roxie wants to remind everyone that she still exists and she's still pretty cute, too.
Today was a pretty great day. I definately took my time getting out of there, but we got lots of baby time in. William was able to come up to the hospital and spend most of the day there before he took me home around 5.
Medical updates:
Both girls are back on the grow lights, as their bilirubin numbers (jaundice) crept back up a little. A minor hitch, but they have to have those glasses on again. (Didn't I ask for this yesterday? Ouch.)
Naomi now has her PICline (sounds like: pick-line) in. They tried to get this in the other day, but weren't successful. Having this done is good, as she will no longer have to be stuck every few days for a new IV site. (And she won't have those water wings taped to her hand like you see in the picture.)
Lillian is now on a nasal canula to breathe. This is where we all stop and praise the universe for a nurse named Linsey. She's noticed how much Lillian hated that thing on her head (It was hard not to. Much of the time, she just clutched at it and squawked.) and decided she was going to throw temper tantrum until the doctor let her switch over to a high pressure canula. This means she's still getting the oxygen support if she needs it, but it comes from a much smaller apparatus. They can also humidify the air through this so her poor little nostrils don't dry out. So, Lillian's little head is free of the giant evil breathing thing.
LInsey also discovered that both girls very much like to lie on thier bellies. This is normally a big no-no for infants, but with all the monitors, there is little risk of trouble. When I went in this morning, both of them were just sacked out on their bellies, sleeping so peacefully.
Lillian's breathing and oxygen saturation rate has been so much better and steadier today. They have, however, canceled the third and last ibuprofin dose for tonight. Her urine production has been a little low today and this treatment, because it constricts blood vessels, can interfere with kidneys. So, to err on the side of caution, they've held off. They'll reevaluate in the morning.
Now for the really good stuff.
We got to hold both babies today. Both of us got to hold both babies. I am still a little high from it all! We took each girl out one at a time. They came to me first, and I got to hold them skin-to-skin on my chest. Apparently time on mom's chest helps them regulate body temperature and breathing rate. After about 20 minutes there, each girl moved to Dad's chest, all bundled in warmed blankets. They were clearly so pleased by this. Both of them were just snuggled in, occasionally opening an eye to see what was up, but mostly just a melty bundle of baby, happy to be in loving arms. According to the nurse, we should be able to do this once a day. That is all I need in this world right now.
Tonight, I will snuggle with my dog, but she doesn't smell quite as good as new baby.
Love to you all!
Day 4
Day 4 has been largely uneventful. This is okay. No big tests or maor events.
Both girls are out from the grow lights, so they aren't wearing thier little tanning masks anymore. This means we get to see their gorgeous eyes when they pop open. I know that they aren't looking at us yet, but it still feels pretty good. They both had their bilirubin levels retested and are staying steadily below the worry line, so the lights are off. Now they are covered under a blanket, much like a parrot at night.
Lillian had her first dose of the ibuprofen last night and her second tonight. They are keeping a close eye on kidney function for this, so the staff have to weigh all of her wet diapers. If they weren't so damn tiny and cute, this would be ickier. One more dose tomorrow night and then we can start looking for some more improvement on her breathing function. She really is a stinker, though. The oxygen saturation level should be anywhere between 85 and 99. LIllian likes to dip down to 84, make the machine beep and her mother panic. None of the staff are perturbed by this, but beeping machines make me twitchy. I've asked everyone and thier sister about this and its long term ramifications. In response I get, "It's a preemie thing. Really. Fine." and a very sympathetic smile. I've told her that if she wants that awful thing off her nose, she's got to step it up. I'm pretty sure she rolled her eyes at me. Where's that tanning mask??
Naomi has been pretty steady, but still fiesty. She's still quite the flipper and flopper. They put them in differnt positions frequently with bolsters and rolled towels (washcloths) to prevent any sores or flat headedness. But Naomi almost always manages to pull every thing around so she's all flopped out spread eagle and then she tosses her forearm over her eyes. I see the teenage years very clearly: Lillian's going to be rolling her eyes and harumphing while Naomi sleeps until 3 pm.
They are going to start feeding Naomi 1cc of breastmilk at a time. This is good, because I'm not making much more than that. (That is also normal, as I have been assured by the lactation consultant. Everyone here will have a lot more time after tomorrow when I am discharged and they are not having to constantly reassure the kind of weepy, gimpy lady in the fuzzy bathrobe. I think that must also be fairly standard practice for their job descriptions. "How well do you deal with overly emotional women who limp through hallways in various forms of sleepwear and flip flops?" It's like some kind of zombie overnight camp here.)
I intend to take more pictures of the ladies tomorrow, so as to include those in the update.
Love and tiny kisses,
Me and the girls.
Day 3, vol. II
This update is long and full of medical stuff, too. It's not that I expect you to read and/or memorize it all, but this is a good a way as any to keep track of all of this.
After holding Naomi this afternoon, I was just giddy for hours. Floating on air. We haven't gotten to hold Lillian yet, but tonight the nurse taught us a trick. Instead of swaddling her with a blanket, we can kind of capture her arms and legs (easier said than done!) and gently hold her still. Her heart rate calmed right down and she stopped crying in seconds. I just sat there with her like that for minutes and she stayed calm. It was almost as good. I still can't wait to hold her, though. William did the same trick with Naomi and it really works. We'd been so nervous abou touching them, just touching a hand or foot, not wanting to irritate them so this was almost like being given permission to handle them more.
They had three tests today.
Head ultrasound: To look for brain bleeds, which are pretty common in premature babies
Both girls have a clear report. They may have another look in a month or so, but they
get a big A+ there.
Chest X-ray: To check lungs, heart and circulation
Naomi: A. Everything looks clear!
Lillian: B/B-. Things are a little muddy.
Echocardiogram: Basically an ultrasound of the heart to track circulation. Many (most?) preemies are born with what's called a PDA--patent duct arteriosis, for those of you keeping notes. While they're in the womb, the lungs don't need blood flow, so the blood gets used for all the other parts. Once they're outside it's essentially a hole in the heart. Most of the time, a PDA will close on it's own.
Naomi: Hers is there, but so tiny, that the docs are pretty sure it will close by itself
without intervention.
Lillian: This is what's making her chest xray muddy. It's really just like a bigger than
usual heart murmur. They will treat this with--get this--ibuprofen. It's not like
we can just toss her an Advil, but they'll give her an infant mix in her IV starting
tonight. They expect that after 3 doses, they'll see a marked improvement.
This is also an explanation for why she's still on the cpap breathing apparatus
(just a long tube that covers her nose and is vented to an air mix.) and her
sister is already off.
Once we can close up the PDA (even a little) and get her off the cpap, then we
can hold her!
Tonight they are putting a PICline into Naomi. This is a longer term IV that goes through a catheter in her leg nearer to hear heart. This is standard and okay. Lillian will get one soon. They had been accessing both of them through their belly buttons, but after a few days they want to let those heal up and the veins in their hands and feet are just too tiny and fragile to hold up for long. With one of these, they will get stuck less often. So, it sounds scary, but it's still a step in the right direction.
**I have been waiting up for the Nurse Practioner to come and give me the update on the line insertion. She got it into her leg, but couldn't get past the groin. They didn't want to maul her, so they put a regular IV in her hand. They'll giver her a break and try again tomorrow or Thursday. The good news from this? During the procedure, which lasted almost an hour, her oxygen levels and breathing rates stayed very steady. Her heart rate increased a bit, but that's cause she was pissed. Understandably. It's great that she can handle stressors this way.
Now, a very tired and still giddy mama will sleep. So much love to all of you.
Day 3, Hour 48
The girls are now a little more than 48 hours old.
Today, they let me (and Grandma) hold Naomi. I have no words to describe that for you. You'll have to see the pictures.
I told you last time about the reverse isolation, but both girls are now clear of that. I think it only lasted about 12 hours. Their bilirubin levels areheaded in the right direction, so that means we'll get to turn off the grow lights pretty soon. The little eye masks are cute, but judging by how much they reach up for them, also pretty annoying.
Naomi is just breathing with the little prongs in her nose, which you'll see in the pictures.
As soon as Lillian is off the breathing apparatus, we can hold her, too. Boy, was she jealous! We'll have our hands full when both of these girls are ready!
They had several tests today, and we'll get the results later this afternoon.
Still on the uphill climb.
Day 2, Hour 33-ish
The girls are still doing well. They have put them on the glow-lights, to combat some jaundice, so their little faces are covered by eye patches and with the cpap breathing apparatus over thier noses, they look like tiny miners headed into the caves. Naomi spends a lot of her time clutching that thing on her forehead. Both girls have learned to pull the tube out of thier mouths, so I count that fiestiness as good. This tube is just to let air out of their bellies, so they're not tugging on crucial equipment. Lillian was squeaking up a storm while they prodded and tested and positioned her. I certainly don't like to hear a baby cry, but it was good to hear her complain, you know?
They have been put in "reverse isolation" which means that anyone who is handling them, or their mother who just wants to touch them, has to wear gloves and gown. This is due thier white blood cell counts being a little low, more of a preventative measure. We're hoping to be able to handle them more soon and maybe hold them by the end of the week. This is definately the hardest part.
They are still wowing the staff with their fight and blowing me away with their amazingness.
Update, Hour 12
Both girls have been taken off the ventilator tubes and are breathing on their own (with nose thingies.) I went down to say goodnight and they look great. I have footprint cards that are the most adorable things ever and must be scanned. Naomi is a fiesty thing--had a grip on her tube and was ready to rip ot out herself. Lillian is a little calmer, but has a great grip on a finger if it's offered. Now, I sleep. I can't wait to see them again.
