Sign language and a new dress

That first photo just cracks me up. I'm not sure what it LOOKS like Makayla's doing - but what she's actually doing is signing "drink," while watching "Baby Signing Time." Hard to tell, I know - it doesn't really resemble the true sign that closely - but it's her own version, and it's pretty darn cute when she does it!

If you've never heard of Signing Time or Baby Signing Time, you really are missing out - these videos are so awesome. Anthony LOVES - LOVES - LOVES them, and was so sad when they stopped showing Signing Time on PBS last year. He was thrilled when I bought some videos for our recent 4-week road trip (more on that in coming posts). I also decided to try a couple of the Baby Signing Time videos, and the twins are totally hooked.

We had already been doing some sign language with the girls...mostly the basics...please, thank you, more, eat, bottle, milk, etc. Mackenzie's Early Intervention teacher does a bit more sign language with her when working on language skills, as well. But we took the Baby Signing Time videos (the first 2 that came out) with us on our trip, and I am amazed at how many signs the girls have picked up. Words they regularly use include: more, milk, eat, drink, please, thank you, all done, sleepy, baby, hat, car, and shoes. When prompted, they can do many more, including strawberry, water, bus, diaper, and bath. Today they were asking me for grapes and crackers using sign language! As an added benefit, the girls love the videos so much that on our trip, when the girls were screaming in the car, the videos were the one thing that would definitely calm them down! Darrell and I got to listen to Baby Signing Time a LOT on our road trip!

Anyway...I'm NOT fluent in sign language, and I'm learning right along with them, but I'm a huge advocate of these videos, because I see what a difference it makes already for my kiddos when they can communicate to me what they want. Rather than screaming and crying and me playing a guessing game to figure out what the problem is, they can tell me exactly what they want/need, and it makes things much more peaceful. Don't get me wrong - we still have our share of chaos - we DO have 18-month old twins, after all! But anything that helps reduce the number of tantrums - I'm all for that!

I stayed up late last night trying out a surprise gift my sweet hubby got me while on our road trip - a new sewing machine! I had recently bought the Pink Fig Sophia Dress and Swing Top pattern and wanted to try it out, so I decided to make a dress for the girls. I simplified it for time's sake and because it's just too hot here in the summer to have two layers of fabric on a long dress like this. I'm still happy with how it turned out, especially considering it was my first time ever doing any shirring OR gathering, both of which I had to do on this dress!! I am in LOVE with Melissa Averinos' Sugar Snap fabrics, which I used for the dress. They are so bold and vibrant and just gorgeous...the pictures can't possibly do them justice.

Makayla was a little unhappy with me taking her photos here because all she really wanted to do was nurse. That's all she really wanted to do ALL DAY LONG today. She's trying to get 2 molars in right now, and I suppose it's soothing to her to nurse. But really? I don't have time to sit around ALL DAY LONG and nurse her. Alas - how could I refuse those big, huge brown eyes filled with giant crocodile tears???

Baby shower gifts

My dear friend Heather's baby shower was Saturday afternoon, and I had been trying to figure out what to make for her. I knew it would be *something* handmade, but hadn't decided on what - a blanket? Bibs? Burpcloths? Too many decisions! Finally, it dawned on me - a nursing cover-up!! (And some matching burp cloths...you can NEVER have too many burp cloths, right?!)

I found a great tutorial here, which I mostly followed. I do recommend making the boning a bit longer...I made mine 14" rather than 12", but that's just personal preference. I also recommend using 1.25" D-rings, rather than the 1-inch - I used the 1-inch, because that's what I had on hand, and that's what was called for, but I think they were just a little bit too small.

I used some Amy Butler fabric I'd been holding in my stash - I *love* pink and orange together - they are just so bright and cheery - such happy colors together! A great feature to this cover-up is that both bottom corners have a triangle pocket made of flannel. The flannel can be used to wipe baby's mouth when she's finished nursing, and the pocket can be used to stash nursing pads, pacifiers...whatever!

For the burp cloths, I just turned under the edges of a strip of fabric, and stitched it down the center of a pre-folded cloth diaper. (I do pre-wash and dry the cloth diapers before doing this, because they do shrink up quite a bit on their first wash, and otherwise they would end up quite puckered.) This is an easy way to transform a plain cloth diaper into a stylish burp cloth!

I added some nursing pads, Lansinoh cream, milk bags, and Mother's Milk tea, for a complete breastfeeding-themed gift. (Heather's quite the lactivist like me!) I hope she enjoys the gifts, and I can't wait to meet sweet baby girl Macy in a couple months!!

Long overdue update!

Wow, it's really been a long time since I've posted an update!! Sorry about that - too busy actually taking care of the kiddos to sit and post updates about them!! :)

Let's see, what's new...we saw the neonatologist on May 9. Mackenzie has a milk protein allergy, so we are now adding a lactose-free hypoallergenic formula to her breastmilk (Nutramigen). It seems to have done the trick - she is eczema free now and spitting up much less. Unfortunately, the stuff smells terrible going in and coming out, and it costs a small fortune...but she's gaining weight, so it's worth it! We are up to about 36 calories/ounce now (normal is 20 cal/oz), and she's regularly taking 3 oz per feeding (which equates to more like 5.5 oz worth of calories). She did take 6 oz in one feeding last week once, but she ate like crap the rest of the day!! Yesterday she took a 4 oz feeding and spit up a LOT afterwards...I think 3 oz is about what her tummy can handle. And as of last Wednesday, Mackenzie is up to 8 lbs, 5 oz!!! Woo hoo!!

At Mackenzie's O.T. appt on Friday, the therapist noted that Mack's legs are hypertonic - which basically means her muscles have too much tone. This causes them to be tight and basically contracted all the time. Mainly it's her calves and hamstrings. The therapist was unable to get Mack's legs in a straight position due to the problem, so now we are doing stretching with her a few times/day. This can be a problem for preemies, and it can also be a sign of more significant problems, such as cerebral palsy. There's not much else to do about it at this point, other than to sort of "wait and see." The girls have an appointment in the NICU follow-up clinic next Thursday, June 12, so I'm hoping they can shed a little more light on this and the overall big picture as far as how she's doing.

Mackenzie's doing well otherwise. She's so smily and happy (after she's been fed!), loves to chew on her fingers, and has discovered the wonder of her toes. She likes sitting in the infant rocker and batting at the toys on the bar, and will also lay on the playmat and bat at the hanging animals. She can roll from her tummy to her back, and is getting close to being able to go from her back to her tummy. She likes laying next to Makayla and grabbing Makayla's hair or her hands.

Makayla continues to have quite a bit of reflux, though she doesn't seem particularly bothered by it anymore. She also continues to have apnea alarms fairly regularly, though we occasionally get through a night without any alarms. The doctor we saw on the 9th said she was surprised Makayla's still having so many alarms. As of last Wednesday, Makayla weighed 13 lbs, 11 oz!! She's quite the rolly polly little thing.

Makayla talks up a storm, and loves to do back-and-forth "conversation" with anyone who will pay attention to her. I really have to get it on video, b/c she totally responds to anyone who will talk to her. She has also figured out how to turn on the charm when someone walks by her while she's in the bouncy seat - she's realized that if she lights up with a big grin and some kicks, she's likely to get rewarded by being picked up! Makayla can also roll from tummy to back, but not back to tummy yet, though she's close. She sits up in the Bebe Pod seat sometimes - yesterday she sat in it while I was working on a craft, and seemed to enjoy herself. She also likes sitting in the bouncy seat watching me cook or do chores in the kitchen. I think Makayla's getting close to being ready to try some solid foods. She watches me eat very intently and practically begs to be included. The doc said we'll discuss solids at their 6 month appt. Mackenzie's therapist said she's no where near being ready for solids yet, which I wasn't surprised to hear.

We had a nice visit with my mom for a couple weeks in May. She helped me get through some much-needed sorting in closets and the kitchen. I literally got rid of half of my clothes!! It felt great!! The girls enjoyed all the extra attention, as did Anthony.

We also have some other GREAT news...we are in escrow on our first house!! We expect to close sometime mid-month -in the next 2-3 weeks. The house is in San Jacinto, which is on the other side of the big mountain from where we are now. It's closer to Darrell's work, and it's in a cooler area...the average in July-August is about 100, as opposed to 120 here, and it actually cools off at night, unlike here. It's a 2-story house, about 2400 sq ft (so 1100 more than what we have here!), with 4 bedrooms plus an open loft area. It's a nice sized lot, so the kids will have a place to run and play outside, and it's got a cute little courtyard off the dining room area on one side of the house. It was a foreclosure, so we got a great deal, and it's in great shape...just built in late 2005, sold for the first time in May 2006. Here's a link if you want to see pics, although they aren't great pics... http://www.californiamoves.com/property/propertydetails.aspx?propertyguid=882d9380-46d2-411c-a6e2-3bef73d0c512&page=1&PropSearch=10&sortord=D&sort1=listprice&qstext=rogers+way&rpp=10.
My dad is coming out June 12 - July 2, to be here to help out with the move - yay for help!! Anthony can't wait to see his grandpa again!!

Okay, gonna go find some recent pics to post! The girls had their first swimming experience last week, so I'll post some pics of that too.

4 groovy months!!!

Can you believe the girls are 4 months old today? That's a third of a year! That's about 18 weeks! That's 120 days or so. I have no idea how many hours or minutes or seconds that is...but wow, the time has flown by!! And at the same time, it feels like they've been here, a part of our family, for...well, forever!

We've been keeping quite busy over the past few weeks. Mackenzie continues to see her occupational therapist weekly...I enjoy the sessions, because it's mostly play time, and it gives me some individual time with her. Some days I think her feedings are getting so much better, and other days it feels like they're as difficult as ever. The awesome, wonderful news is that in spite of her frequent reluctance to eat, the formula we're adding to her breast milk is doing the trick, and she's gaining weight. Last Thursday, at the geneticist appointment (which I'll update about in a minute), she weighed 6 lbs, 8 oz (up from 5 lbs, 13 oz on 3/31), and this past Wednesday, at our breastfeeding clinic, she weighed 6 lbs, 14 oz!!! That's 6 oz in 6 days - awesome!! There have been several times when we've gotten her take 3 oz in a feeding, though there are also still times when we can only get 1 oz into her. I'm trying not to stress about it, now that she's gaining, and just hope it all balances out in the end. She's been smiling more and more, and babbling some too. She's discovered the wonder of her hands, and spends time staring at them, grabbing one hand with the other, and putting them in her mouth. She's just now starting to be able to wear newborn-sized clothing, though much of it is still big on her.

Darrell took Mackenzie to her geneticist appointment a week and a half ago. According to the doctor, her features fit 20-30 different potential genetic syndromes. The down-side is that none of the syndromes are good news, with lots of associated problems. The up-side is that she does not have all of the features of any of the syndromes, so there is still a good possibility that her problems are coincidental and not part of any bigger syndrome. They drew her blood that day to run some tests, which we do not have the results for yet. She will be going on Tuesday for a kidney ultrasound and a brain ultrasound, and the doctor also wants her to see an opthamologist for an eye exam. We'll keep you updated.

Makayla is our little butterball! Seriously, the rolls on this girl...squeezably delicious! On Wednesday she weighed in at 12 lbs, 3 oz. She's in mostly 3-6 month clothes now! It's funny to have twins, and one of them wears newborn diapers and one of them wears size 2 diapers!! Makayla continues to have a lot of reflux, and has also started drooling a lot - which means we're changing onesies several times a day. You might suggest that I put a bib on her...but honestly, it's kind of fun to put different outfits on her!! LOL She rolled over from her tummy to her back for the first time this week...she and Mackenzie were both on the play mat, and when she rolled over, she literally pushed Mackenzie right off the mat! She's very engaging, babbling a lot and laughing a lot (as long as she's been fed). She is very insistent about eating the second she wakes up!

Anthony just adores the girls and is constantly showing his love and affection. Sometimes he's a bit too over-zealous in showing his love, and we have to keep reminding him to be gentle and a little bit quieter with them. But he's a fantastic big brother!

I'll try to get some new pics taken this week!!

Doctor's appt and updates

Sorry it's taken me a while to update from the girls' appt on Monday. Was a very busy week, and then Darrell was out of town Fri and Sat, so I was on my own with the kiddos.

The girls saw the neonatologist in Fontana on Monday. Mackenzie only weighed 5 lbs, 13 oz on their scale - but she's never been weighed on that scale before. The doc was obviously concerned, as we have been. She said to start alternating her feedings between breastmilk and 22-calorie formula (regular formula and breastmilk have 20 cal/oz). She also said to increase her Reglan (for reflux) and started her on Tagament (also for reflux). She put in a referral for Mackenzie to see a geneticist to make sure there's not some genetic syndrome that caused her clefts and the other problems, including her failure to thrive. The good news was that we got to stop using the apnea monitor for her and she's off her breathing medicine!!! Yay!

Makayla weighed 10 lbs, 13 0z - no eating problems here! The doc increased her Reglan and left her on the Prilosec (both for reflux). The doc said she will not discontinue her apnea monitor before 7 months, since it is still going off every night multiple times. Crazy child - doesn't she know that breathing is sort of important???

Both girls will go back on May 9 for another visit with the neonatologist and to get their shots.

On Wednesday, at my breastfeeding group, we weighed the girls - and they have been weighed on that scale many times, so it's a bit more accurate. Mackenzie officially hit 6 lbs!!!! Woo hoo!!! And Makayla was a whopping 11 lbs, 8 oz!!! She really is trying to double Mackenzie's weight, I think! You should see the rolls on this girl! Those thighs!!

In the meantime, we started giving Mackenzie the formula at every other feeding, and she didn't do well on it...became very fussy and started spitting up a LOT - like still spitting up formula 3 hours after a feeding - and then didn't want to eat at her next feeding b/c she still had a tummy full of undigested formula! And of course, I'm such a lacivist, I hated the idea of giving her so much formula anyway - especially when our freezers are overflowing with breastmilk!! So after doing some research and talking with my lactation consultant and the pediatrician, we are now just adding a little bit of formula powder to the breastmilk at every feeding, to bring it up to 22 cal/oz. This way, she's still getting most of her nutrition from breastmilk, and only getting a small amount of the formula. So far, it seems to be working better. She's not spitting up as much and not as fussy. If she continues to tolerate it, her occupational therapist and the neonatologist said we could slowly increase the amount of formula so she gets more calories per oz - more "bang for the buck."

In case you didn't notice, I've added a link over on the right side for Barefoot Books. They are the most awesome children's books ever, and I signed up to sell them! If you click on the banner up on the top right, or on the bottom of my blog, it will take you directly to my website, where you can learn more and even make purchases!

I'll try to get some new pics up this week! Have a great week, everyone!

Milestones

Well, both girls are holding their heads up, although Mackenzie does it MUCH better than Makayla. Mackenzie can also roll herself from her tummy to her back!! My theory is that there just isn't much to roll, so it's easy!! Both girls are also finding their smiles - they've been smiling in their sleep for a long time, but now they are starting to actually smile intentionally. Yay!! My stepdaughter Samantha came Tuesday night and spent the night, and helped me out all day yesterday - she was a HUGE help!! We went to the pharmacy and got Makayla's new tummy medicine - the doc put her on Prilosec for her reflux...here's hoping it works! We also took the kids to my breastfeeding group. Makayla, the little chub, weighs 9 lbs, 10 oz !!! She's so rolly polly, it's so cute. Mackenzie, sweet Mackenzie, still only weighs 5 lbs, 7 oz - but at least she gained 5 oz this week!! We're gonna have to throw a party to celebrate when she hits 6 lbs - maybe by 3 months of age??

Here are some pics - haven't posted any for a while.


This is from several weeks ago...aren't they just adorable?!


Isn't this so cute, how Makayla puts her arm around Mackenzie - the protective big sister!!


This is from maybe a week or two ago.


Whatcha doin' mom??


This is today...I am so amazed at well Mackenzie holds her head up. They say you can use this little seat once they can hold their heads up...but I don't think they anticipated that would happen for a baby less than 5 1/2 lbs!! I had to put a blanket behind her to fill in some of the vast empty space!!


My little china doll.


Look, mom, I'm learning how to smile!! This is fun!


And this is what Makayla thought of the whole idea...you want me to do WHAT???? Waaaahhhhh!

Oh, and let me explain this pic...I've been talking with a couple friends about our breastmilk. Normal breastmilk separates after it sits for a while, and usually you end up with most of it looking like slightly cloudy water, with a thin layer of milky cream on top. My breastmilk? Well, apparently I make SUPER milk...this is what it looks like after it separates - a thin layer of cloudy water on bottom, topped by several ounces of very creamy milk, topped by an even thicker custard-like layer of pure fat!! They've been wanting to see it for themselves...so here it is!!

Two months old already!!

Wow, I just realized I haven't posted in almost 3 weeks...oops! Sorry 'bout that! I can hardly believe it - the girls are 2 months old already! It's a surreal feeling - at the same time, it feels both as though they just got here and as if they've been here forever! I can honestly say I have never been so exhausted in my life, nor have I ever felt so strong...it's amazing how you are given the grace and strength you need, when you need it. Before the girls were here, I couldn't imagine how I was going to handle a 2-yr old and twins; never imagined one of the twins would have special needs! I am definitely relying more on my faith than ever before in my life, and I often recite one of my favorite scriptures - "My grace is sufficient for you."

Makayla weighed 8 lbs, 9 oz last Friday 2/22 (was 5 lbs, 6 oz at birth). She is finally on the regular growth chart, though still only at the 5th %ile - but ON the chart, nonetheless!! She is so snuggly and sweet, though she is by far the needier of the two as far as needing to be held and comforted. She has really bad reflux, which so far is not really responding to the meds, so she cries a LOT. I feel so bad when I can't comfort her...it's very sad. She is BFing really well and loves to be worn in the sling. She's a funny combination of Darrell and me - her features are so me - looks exactly like I did as a baby; but her skin is so much darker than mine. She's just precious - and SO much hair - it just keeps getting thicker and curlier - so cute.

Mackenzie has had a really hard time with feeding and gaining weight. She was 4 lbs, 2 oz when she came home from the NICU on Jan 26; a month later, she's only 5 lbs, 2 oz (she was 2 lbs, 15 oz at birth). She actually went the entire week last week (Fri-Fri) without gaining even an ounce, so I was glad to see on Wednesday that she had gained a couple since Friday. She's still not even on the preemie growth chart, let alone the regular one! We're still not entirely sure why she hates eating so much, but her feedings are pretty traumatic for all involved - she just screams and flails and pushes the bottle away...etc etc. The doc put her on reflux medication in case that is the problem, and we met with an Occupational Therapist this yesterday. They gave us some calming techniques to try, and a new bottle to try. They would like to see her weekly for 6 months - but we have to wait for insurance approval. It truly breaks my heart b/c she cries b/c she's hungry, but then she cries when we give her the bottle...it's a catch 22. She is just as cute as can be, and amazingly strong...holds her head up so well, rolls over from her stomach to her back...it's so funny to watch her, just this teeny tiny thing with so much spunk!

Anthony is so in-love with his baby sisters. He calls them "mister 'Kayla" and "mister Kenzie." Mister is his way of combining "My" and "sister" - how cute is that?! I've tried, fruitlessly, to explain to him that mister means a boy, but he just shakes his head and laughs at me...LOL. He also keeps up a running commentary for me on what's happening with the girls - "Mama, Kenzie's crying." "Mama, Kayla's hungry AGAIN." "Mama, Kayla spit out her binky." "Mama, Kenzie spit up milk from her nose." (When she spits up, b/c of her palate, sometimes it comes out her nose - really gross!) And it's hysterical listening to him talk to them the same way I do - he's a little parrot. "What's the problem, mister Kenzie?" I always tell the girls, "I know, honey, I know..." when they're upset abut something. Now Anthony says it..."I know, baby girl, I know.

I had family here helping out until this past Saturday, when my mom left. Monday, Darrell went to work and it was my first day alone with all 3 kids. It wasn't as bad as I thought it might be, but by the time he got home, I was definitely ready for a break. So I told him I needed a steaming hot bubble bath and a glass of wine. He said to go ahead. Of course, before the water was even finished running, Makayla was awake and hungry - so my steaming hot bubble bath with wine became a luke-warm bath with a nursing baby!! LOL - at least I got a bath! Darrell's been off the rest of this week - but come next week, he's back to work full time, and I'm on my own. I do have a friend lined up to come over on Tuesday for a few hours to help out.

On Wednesdays, I've been going to a breastfeeding group, which I really enjoy. But I've been just taking one baby pretty much, other than the time my sister went with and we took both of them. So when I told the other moms and the leader - a lactation consultant - that this week I would be on my own with all 3, so I didn't think I'd make it to group, they all insisted that I bring them all along. OMG - can you imagine what that would be like?? I am so scared to try it, but I guess I'm gonna have to figure it out sooner or later, so depending on how I feel that morning, and on how everyone's temperments are that morning, I may give it a try.

I have my tubal ligation scheduled for Friday, March 14th. This shop's closed!!! A good friend is flying in from San Francisco to help out with the kids and for a visit that weekend. Yay!

I don't know what we're doing for Anthony's 3rd birthday on the 17th. Since he's no longer in daycare, he doesn't have a bunch of friends to invite to a party. I have several friends with kids near his age, so maybe we'll all just have a picnic at the park or something like that.

Sorry so long between updates!!

Things are a tad busy around here, as you can imagine. We took the girls to an appointment with a neonatologist at Kaiser - Riverside last week, at their high risk clinic. Makayla's now on Reglan for her reflux, and I have seen some improvement, though she still seems to have some discomfort. She weighed 7 lbs, 3 oz - quite the little cuddly chub! The doc wasn't concerned about her apnea alarms, and actually, she hasn't had any more alarms since she's been on the Reglan - which makes me think the apnea episodes may have been related to the reflux.

Mackenzie's giving us some problems in the feeding and growing department, though. She only weighed 4 lbs, 5 oz, which meant she had only gained 1 oz in the 8 days since her previous appt...not good!! She seems to have developed a major aversion to eating - at least from the bottle. She just screams and tenses her whole body and arches her back and pushes the bottle away with her arms and shakes her head back and forth - as many ways of saying "NO!" as she can possibly come up with! It's quite frustrating for her and for whomever is feeding her! She demonstrated for us while we were in with the doctor, so he didn't have to just imagine what we were describing.

Anyway, the doc put in a referral for the craniofacial team (that's who will treat her cleft issues) and for occupational therapy (to help with feeding and with sensory issues). The OT referral hasn't gone through yet, but her appointment with the craniofacial team is this Friday in Fontana. The nurse from the team called yesterday and gave us a few tips on feeding, so we've been trying those out - some of them seem to help. She's also going to bring some different bottles/nipples for us to try on Friday. I also met with a lactation consultant yesterday - she got to witness and experience firsthand what happens during feedings - we have her sympathy! She gave me a supplemental nursing system to try out with Mackenzie - it's basically a bottle filled with breastmilk hanging from my shirt, with a small, thin tube that I tape to my breast - so when she latches on, the tube also goes in her mouth and give her extra milk. We had a little success with it yesterday - will continue to try, since she really enjoys breastfeeding. We tried to do a pre-nursing and post-nursing weigh-in for her, to see how much milk she's able to get, but the scale where we met was not very accurate, so it didn't really work. I'm going to see her again tomorrow at a place that has a much more accurate scale, so we'll try again. She's also been weighed on that scale before, a couple weeks ago, so it will be an accurate measurement of how much she's gained in that time.

So between Makayla wanting to nurse every couple hours, and the feedings with Mackenzie being so time-consuming and stressful - seems like feeding is about all we have time for around here!!!

Both girls have a well-baby check-up with the pediatrician this Saturday and will get their first round of shots - yikes! Here's to hoping they don't both get all fussy and miserable afterwards! Will definitely be pre-dosing them with Tylenol!! It's bad enough when one baby is fussy after shots - can't imagine it multiplied!

Anthony is just thoroughly enjoying his baby sisters. He loves to touch them and kiss them - and wants to be really really helpful. So helpful that he tried to pick up Makayla out of the swing a couple days ago when she was fussing. Yeah, gonna have to keep an eye on that!! ;)

Pictures galore and an update

My sister Karen and her 18-month old daughter Emma came for an impromptu visit last week. They arrived on Sunday, and then my mom arrived on Tuesday. As you can imagine, it was a full house - but we had a blast, and got lots of great pictures.

The girls are growing so fast (well, at least Makayla is!). Mackenzie had a doctor's appointment last week, and she's grown almost 4 inches since she was born. She weighed 4 lbs, 4 oz...still has a ways to go to catch up!! Makayla weighed 6 lbs, 11 oz at the breastfeeding clinic last week!! She's chunking-up quite nicely! Both girls will see the neonatologist this week, so hopefully there will be some more gain! Mackenzie will also have another cranial ultrasound, to check on her brain bleed.

Mackenzie's biggest issue right now is she doesn't particularly care to eat. She'd go 6 hours between feedings if we let her!! And each feeding is a challenge - first to get her to accept the bottle, then to get her to eat enough. It's a constant battle - and I don't want feedings to become a source of angst for her!! She does love to breastfeed, but she can't suck well and can't latch well, so basically I have to kind of hold my nipple in her mouth and essentially hand-express milk into her mouth. She doesn't seem to mind, but I have no way of knowing how much she's actually getting, so I don't feel comfortable letting her just BF for all her feedings. The doc is not going to be very happy with mommy and daddy if she hasn't gained much!!

Makayla's two biggest issues right now are her apnea and reflux. The first couple weeks she was home, her apnea alarm NEVER went off - only her low heartrate alarm did. But for the last week and a half or so, she has been setting off her apnea alarm a LOT - yesterday I think it went off at least a dozen times; that said, she never had any color change (like she did the one day when she was purple around her mouth a little over a week ago). And her reflux is getting worse by the day, it seems. She can't stand to be laid flat, she cries in pain when she spits up, she is bothered when she gets the hiccups, and she wants to nurse constantly - I think b/c the sucking soothes her discomfort. We're going to discuss this with the neonatologist on Wednesday.

Update on the girls

Sorry it's been so long since I updated...life's been a little busy around here!

Makayla's doing great here at home. She's up to 6 lbs even, as of yesterday, nursing like crazy. She loves her swing (sleeps there a lot) and loves to be held. And praise God, the second test for CAH (from the newborn screening) came back negative!!!!! Yay!! She has been having alarms for bradycardia (low heart rate) on her apnea monitor, mostly during and after feedings. And always at night, for some reason. Anyway, the neonatologist said he's not concerned, as it's normal for this to happen during feedings and because she's not turning blue when it happens. I'm still waiting to hear from the Kaiser neonatologist regarding setting up an appointment for Makayla for follow-up. He'll be the one monitoring her for apnea, bradycardia, Synagis shots, etc - all of the preemie issues.


We saw the geneticist yesterday, regarding getting the girls tested for Charcot-Marie-Tooth disease (the neuromuscular condition I have). Each child has a 50% chance of having it. The doc, however, does not want to test the girls at this point, b/c he feels children shouldn't be "labeled" unnecessarily, and basically said that if/when they develop symptoms, then they could be tested. Darrell sort of agreed with the doctor. I was frustrated with this, though I understand his reasoning - but I wonder if he has children of his own! He said we have enough on our plates right now and that we didn't need this to worry about too...does he think that just because we don't have a positive test, that I won't worry about it???? At least if we did the test, there would be a 50% chance I'd be relieved of this worry...whereas without the test, I'll continue to wonder and worry. Anyway, he did say we could do the test anytime, so if I'm still thinking about it and worrying about it in a couple months, after things have settled down, then we'll revisit the issue.

I went and fed Mackenzie today for her 11:30 feeding. She's doing much better with the breastfeeding now...a combination of having more energy, being more alert, and her growing - so her mouth is a bit bigger! She nursed for about 45 minutes. She's in an open bassinet now - graduated from the incubator. She's up to 3 lbs, 11.5 oz - YAY!! She's nippling every feed now, though they still sometimes have to gavage whatever she hasn't finished in 30 minutes. They are adding Human Milk Fortifier to her breastmilk, to help her gain weight. But we're getting closer to discharge!!! I'm guessing maybe another week to 10 days??? Oh, and her newborn screening came back completely fine!! I was upset last Friday, b/c when I went in, I was looking at her chart and discovered that on 1/1/08, they did a cranial ultrasound and found a Grade I brain bleed, and no one ever told us. However, I talked with the doctor a few days ago, and he said Grade I's are very subjective - what one doc says is a Gr I bleed, another doc might say is nothing. He said it's not associated with any long term problems at all, so I was relieved.

We had a nice surprise on Monday - Darrell's work group threw us a baby shower! We got a double stroller, baby bathtub and toys, and lots of adorable clothes...and diapers...always good. It was really nice to see everyone - I hadn't seen most of them in quite a while.

Update...more prayers, please...

Well, Makayla's home with us!! Our first night wasn't bad - she pretty much slept the entire night, although she wakes up to eat every 2 hours, of course. Which wouldn't be so bad if I didn't still have to pump for Mackenzie as well...I'd basically get about 45 minutes - 1 hour of sleep during each 2-hour cycle. Man, am I tired today! Tonight, she's not really wanting to sleep soundly - keeps fussing in her sleep. She was starting to get kind of loud, even though she's not fully awake, and Anthony was starting to stir, so I brought Makayla out to the living room to avoid waking him. She's dreaming right now and keeps smiling and sort of chuckling in her sleep - SOOOOO cute! She must be having milk dreams!

I got a call from the neonatologist at the hospital this evening. They received Makayla's Newborn Screening results, and she tested positive for a disease called Congenital Adrenal Hyperplasia. It's a genetic disorder affecting the adrenal glands, wherein they don't produce enough of two different hormones that help the body handle stress (illness, injury, etc). I've just read a very little bit about it. There's no cure for it, but it is treated with life-long hormones/steroids that have to be given 2-3 x/day. Anyway, she doesn't for sure have it - the doctor said there are quite a few false positives - but I have to take her back to the hospital tomorrow for more lab work to determine if, in fact, she does have it. Please pray that this was just a false positive and that she will not have to deal with this for her entire life!

And while we're at it, let's add in some prayers that Mackenzie's newborn screening comes back totally negative for everything!!! They don't have her results in yet.

I didn't see Mackenzie today - both b/c of having Makayla home and b/c I seem to be getting a cold. I talked to her nurse this evening, and she has gained weight (albeit very little) the last 3 days. They are still limiting her nipple-time to 15 minutes per feeding, and today she was only able to finish one of her feedings in that time. The other feedings she didn't do so well and a good portion of the milk had to be given through her tube. She continues to be very "active," and pulled out her feeding tube last night when I was there, and again today.

Moo...!!!

Darrell says all I've talked about for the last 48 hours is milk, milk, milk. I guess my life has been sort of consumed with pumping - it's amazing how much harder it is to pump full time than it is to nurse a real-live baby full time! But we're getting there...now if I could just remember to actually TAKE the milk from the freezer with me to the hospital, that would be a good thing. I forgot it when I went earlier today, so now I have to go back later - it's a 50-mile round trip. First thing I did when I got home was make a sign for the garage door reminding myself to take the milk!

Mackenzie continues to amaze us with how strong she is. She is taking 13 cc per feeding now - still mostly tube feedings, but she gets one breast and/or bottle feeding per shift. She breastfed for the first time yesterday, and again today, and I am amazed at how successful she's been in spite of her lip and palate. Her routine antibiotics have been discontinued, and she's only getting a tiny amount of fluid through her IV, so the nurse said it will probably be discontinued soon. She is gaining weight now, which is awesome.

Makayla is also continuing to improve. She has been able to stay off the CPAP, and just gets oxygen through the nasal canula. She gets albuterol breathing treatments every 6 hours. She is having spells of tachypnea (breathing too fast), so they are keeping an eye on that. She's having less episodes of the irregular heartbeat and slow heart rate. Her CRP is basically zero, which means her infection is clearing and the antibiotics are helping. Her bilirubin is down to 8.1, so today is probably the last day she'll have to be under the lights. She has been losing weight, but fortunately they started her on tube feeds yesterday. She's only getting 6 cc per feed now, but they are increasing it by 1 cc with each feeding. Hopefully she'll get to try breastfeeding in the next couple days. I finally got to hold her again today, for only the second time since she was born - it was wonderful. She snuggled right up against my chest.

I'm going to try to post some more pics and a video.