Saturday, January 26, 2008

Together at last


Just hanging out in our Boppy together.



Mmm...a great thing about being a twin...if you can't find your OWN fingers, just suck on your sister's!!!


And this pretty much sums up the difference in their personalities!!

Friday, January 25, 2008

Reunited, and it feels so good...

She's home!!!! We finally have both of our girls at home with us!! This afternoon I finally got to hold BOTH of my girls at the same time - for the first time!

Mackenzie came with an apnea monitor, on caffeine and iron. She had a cranial ultrasound yesterday, and her brain bleed has grown, but it's still only a Grade I. She'll have to go for another u/s in 2 weeks, and we're praying it will be GONE. A home health nurse is coming on Sunday, she'll see the pediatrician on Tuesday, and both girls will see the neonatologist in Riverside on 2/6.

Ok, gotta run - both girls are demanding attention!!

Wednesday, January 23, 2008

Love this...

I stole this off the signature of one of the ladies on the cleft lip/palate board...

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain."

Doing lots and lots of dancing around here!!!!

Our grower/feeder is growing and feeding!!

In the NICU, when a baby is pretty much stable, but just needs more time to learn how to eat and to grow, they are referred to as a "grower/feeder." That's basically what Mackenzie's been for a while now. I talked to her nurse this morning, and she officially hit 4 lbs today!!!! YAY!! AND they removed her feeding tube, as she has been able to take all of her milk by bottle in her alotted time. Another big YAY!! I asked if the docs have mentioned discharge yet, and they hadn't done rounds yet for today. I'll call back later and see if any orders were written. When they order her hearing screen and pneumogram (to check for apnea and bradycardia spells), we'll know we're close - discharge is usually only a day or two away when they order those.

I saw my doctor today regarding my abdominal and back pain. The nausea is gone, but I'm still having quite a bit of pain, mostly in my back now (under my right shoulder blade), and it's much worse after I eat. I can't take a deep breath at all, it hurts so bad. She had me come in for labs yesterday, and had those results in time for my appointment. Initially she thought maybe I just had a bad GI bug, but after we talked, she said it does sound like a gallbladder problem. A couple of my liver function tests were abnormal, which can indicate a gallbladder problem. She is sending me for a HIDA scan, which is apparently the "gold standard" test for gallbladder problems - LOL I have to stay away from the babies for a certain number of hours afterwards b/c they will inject me with a radioactive substance for the test! That probably won't be until next week sometime. Anyway, the doc said if it does show a problem with the gallbladder, she'll refer me to a surgeon to have it taken out, since I've had repeated "attacks" of this kind of pain. If it's not my gallbladder, we'll look at GI issues - I was scheduled for an upper GI/endoscopy last summer, but cancelled it due to the pregnancy. So there could be some reflux or ulcer issues going on.

I just found out this afternoon that I have to take Makayla to Riverside tomorrow for her Synagis shot - apparently they only give them 2 days/month, and today and tomorrow are the days for this month. If I didn't take her, she would have a lapse in protection from RSV before the February shot. It's a darn good thing I followed up on it after my appt today, b/c they were supposed to call us but never did!! I'm praying my daycare provider will let Anthony come tomorrow, so I don't have to drag him along with me. She has her first follow-up appt with the neonatologist on Feb 6. Hopefully we'll be able to get Mackenzie's scheduled for the same time.

Oh, and here's an UGH for ya...Anthony's been going to daycare part time - 3 days/week - for several months. Basically since I got put on bedrest during the pregnancy. Anyway, yesterday the daycare provider called and said she doesn't want to do part-time care anymore, so now we have to find a new daycare for him. Yes, because we needed one more thing on our plates to deal with right now. Thank God my mom's coming back, b/c there's just no way I can manage two babies and two apnea monitors and a toddler, while taking the twins to all their appointments and such. Darrell's planning to take off the last half of February, I think, so that will help too.

Tuesday, January 22, 2008

No time for mommy to get sick!!

Well, last night I ended up taking an ambulance ride to the hospital. About 4:00 p.m. yesterday, I was home alone with Anthony and Makayla, while Darrell visited Mackenzie in the NICU. I had just eaten a pear, and I suddenly had severe stomach pain and nausea. I thought I was coming down with a GI bug or something. I took some nausea medicine in the hopes it would help - I HATE throwing up!! Alas, it didn't work and I proceeded to lose everything I had eaten the entire day. The pain got progressively worse and moved over to the right side and wrapped around my back. I left Darrell a couple messages asking him to please come home, and when he called me back, I told him I thought I was going to have to go to the hospital, the pain was so unbearable. He called some friends to come over, not knowing if he was going to have to take me or what. By the time he and they got here, there was no way I could sit up for a car ride anywhere, and Darrell had to call an ambulance. I'm telling you, the pain was as bad as labor!! You know it's got to be bad for me to be willing to go to JFK hospital (it's the closest but also the most ghetto and busiest).

So when I got there, they did some labs, gave me some nausea medicine and pain medicine - which made the pain bearable but did NOT take it away - and did an abdominal ultrasound. They assumed it was my gallbladder. I figured it wasn't, since this is the 3rd or 4th time over the past couple years I've had an attack like this (though this was by far the worst), and they always think it's my gallbladder, but they never find any stones. So, of course, once again, no stones...so they sent me home without an explanation for the pain. The Dilaudid held me for the night, but today, the pain is bad again. I ate half a piece of dry toast and a cup of chicken broth, and it made the pain worse.

So my thoughts are that it's either an ulcer/reflux issues with radiating pain (brought on by the 800-mg motrins I've been taking since delivery!), or I'm wondering if you can have gallbladder issues without actually having stones. At any rate, I've called the doctor and am waiting for a call back regarding getting an appointment to be seen. Fortunately, Anthony's done a good job of entertaining himself today, and he'll be in daycare the rest of the week. I think he's currently re-enacting last night's drama - he's playing with his fire engine!! (You know, of course, when you call for an ambulance, they feel it necessary to send a fire engine as well!)

So prayers for mommy's tummy would be appreciated!!

And, yay, my mom's coming back a week from today!!!!

Friday, January 18, 2008

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.

Thursday, January 10, 2008

Sweetly Broken

Just wanted to share this song, as it has become one of my favorites. I feel like in the last 14 months, God HAS softened my spirit and sweetly broken me and forced me to surrender in areas of my life I was clinging too tightly to.

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.

Tuesday, January 08, 2008

In about an hour...

...I'll be on my way to the hospital to pick up Makayla!!!! She's coming home!!! She's done great the past couple days, so she's ready. They're giving her the Synergis vaccination to protect her against RSV (a respiratory virus that just causes a cold in healthy kids but can be fatal in preemies), and they are sending her home on an apnea monitor (monitors her heartrate and breathing). They did a pneumogram a couple nights ago, which is just a 12 hour monitoring test to check for any breathing irregularities or heartrate problems. I talked with the doctor this morning, and he said she had some mild periodic breathing (short pauses), and had a couple of very short bradycardia episodes (low heartrate) - like 7 to 9 seconds long each. This is totally typical for a preemie, but to be on the safe side, they are sending us home with a monitor. Darrell and I have both refreshed our CPR training too - a requirement of the NICU.

I'm so thankful our friend Gloria got a couple preemie outfits for the girls - when I went to find something for Makayla to wear home today, I realized two things - one, most people bought us older-sized clothing, so we really don't have many newborn-sized clothes; and two, the newborn-sized clothes would be enormously huge on her, seeing as she's only about 5 lbs and they are made to fit 8-11 lbs. So thank goodness for Gloria and the preemie outfits!!!

It's kind of bittersweet, since we'll be leaving Mackenzie there - I'm sad that they'll be separated for a while (although they're not really together now anyway, since they're in separate beds).

I forgot to ask the doc if Mackenzie's gaining weight again...did I post that she had lost for 3 days in a row? Can't remember! Anyway, they are limiting her bottle-time to 15 minutes per feeding, then tube-feeding whatever she hasn't eaten - all to try to limit how many calories she expends trying to eat. I'll check when I go in this afternoon. I asked him about her anemia; he said it's too soon to see any improvement in her hemoglobin, but confirmed that it continues to be low and said they'll be watching it. She is currently on iron and Procrit; the doc said he's hoping to avoid having to give her a transfusion. At least she was more alert when I went in on Sunday; Saturday when Darrell and I went in, she was so tired she didn't even have the energy to breastfeed. Sunday they had done a gavage feeding for the feed prior to my visit, so she wasn't so tired and was able to nurse for quite a while.

Yesterday was the first day since they were born that I didn't go in to visit - it felt very strange. Darrell went in and did the CPR training and other discharge training, but I was exhausted and also afraid I'm coming down with a cold, so I didn't go (and I had already done the training). And Anthony is still home from daycare, with a runny nose and cough. We did go to Target when Darrell got back from the hospital - my first trip there in many months!!! Woo hoo! We got a baby swing - so so cute - with some gift cards, as well as a couple other little things - pacifiers, an extra cover for the changing table pad, etc. Anthony had a gift card too, and got a new train engine for his Thomas set...always a spirit-lifter for him. I am amazed still at how quickly I get tired out - Darrell could tell I was running out of steam when I was practically hanging from the shopping cart! LOL

I'd like to ask for everyone's prayers about my work situation...or lack thereof. Ideally, I would not have to work and be able to be a stay-at-home mom. The thought of putting the twins in daycare breaks my heart, and sometimes even finding a daycare that will take one baby, let alone two babies, on apnea monitors is extremely difficult. Realistically, me not working is just not feasible for us right now. I got terminated from my hospice job while I was on bedrest - they were only required to hold my job for 16 weeks, and sure enough, during the 17th week, I got a letter informing me that I was no longer employed there! I have mixed feelings about this, but that's another post for another day...just suffice it to say that it may be that I'm better off not being there. I have a limited time remaining on disability, and then I will have no income, so I need to start looking for a job. It would be great if I could find something that either has evening/weekend hours so my schedule and Darrell's could work out such that the girls don't have to spend much time in childcare, or something part-time that pays enough to meet our needs...I don't really know what the answer will be. I know God will meet our needs and provide something...but prayers in this area would DEFINITELY be appreciated. Thank you all!

Friday, January 04, 2008

Look, Ma, no tubes on my face!!



Well, so far so good...Makayla's doing great off the nasal canula. Her respirations have been staying steady all day, even when she was nursing. And since they d/c'd her tube feedings, she finally has a face free of tubes!!



Sweet, tiny Mackenzie - laid her head down on my breast and went to sleep after she finished nursing this afternoon. Can you see how tiny her little head and little hand are? It's so amazing every time I hold her - I just can't believe how little she is. She's like a little china doll.

She has continued to have pauses in her breathing, and she has slight desats during them (where her oxygen level falls), so the nurse practitioner was going to write an order to start caffeine. The nurse who's caring for her today said she will likely have to go home on an apnea monitor, since this is happening - but let's keep praying that she grows out of it before she comes home, so we don't have to deal with that!



Makayla snuggling up to mom after nursing. The nurse said she may actually get to be moved to an open bassinet tomorrow, depending on how she does tonight - and skip the incubator phase.

Both girls actually lost weight from yesterday, but this is likely due to them increasing their nipple feeds - sucking expends calories, so it will take them a little time to get used to that. Mackenzie weighed 1347 grams (2 lbs, 15 oz) when she was born, and today weighs 1418 gms (3 lbs, 2 oz). Makayla weighed 2438 grams (5 lbs, 6 oz) at birth, and today weighs 2255 gms (5 lbs even).

Continuing strides...3 steps forward, 1 step back

Just a quick update...haven't been in to see the girls yet today, but I just got off the phone with their nurse.

They are going to take the nasal canula off Makayla this morning and see how she does. They are also nippling ALL feedings for her, provided her respiratory rate stays within an acceptable level, and I can breastfeed her whenever I'm there.

Mackenzie is nippling every other feeding, as I reported yesterday. One problem that has crept up is she is doing what's called "periodic breathing," which is common in preemies - basically she has episodes where she's not breathing like she should be. So far, her oxygen saturation isn't dropping too much when she does this, but the nurse said they are watching it closely and they may need to start her on some caffeine to help with this.

Since Anthony is home sick today, I won't be going to the hospital at my usual time. Will wait until Darrell is home from running errands and getting the car serviced, then go in...probably for their 2:00 or 5:00 feeding.

Thursday, January 03, 2008

They're one week old!!!



Grandpa got to hold both of the girls today when we went to the hospital. This is the first time the girls have been together since before they were born!! They are one week old today.



Here you can finally see the enormous size difference in them - Makayla is twice as big as Mackenzie!! They were both content because mommy had just nursed both of them. (Not at the same time - we're just trying to master the whole eating thing first!) And check out that hair!!! The nurses are all just totally in love with the girls - they even fight over who gets assigned them! The nurse said once they're a little more stable (mainly Makayla's breathing), they'll put them together in a bed for me and unwrap them so I can get pics of them together without the blankets.

So today was Makayla's first time breastfeeding - and she's a champ! She knew exactly what to do, and was just as peaceful as could be afterwards. Her antibiotics got discontinued today - yay!! She's had no more problems with her heart rate or rhythm since her sepsis (infection) cleared. They are slowly increasing her feedings and decreasing her IV fluids. She can nipple-feed every other feeding (breast or bottle).

Mackenzie's IV was completely discontinued today - woo-hoo - one less thing hooked to her tiny body. Her feedings are continuing to be increased, she's nipple-feeding every other feeding, and the doc said I can breastfeed her whenever I'm there (so not just once/day anymore). AND, the chromosome study came back normal - a huge relief (they did that b/c of her cleft lip/palate and the two skin tags she has on her ear to make sure they weren't indicative of a bigger genetic problem).

Ugh, Darrell just called and said the daycare provider just called him b/c Anthony threw up twice. Seriously, this is getting ridiculous. Since Thanksgiving, the kid has been sick 4 times - and every time we get him well enough to go back to daycare, he goes for 1-2 days and comes home sick again!! He was fine when we sent him back yesterday, then he came home with a runny nose and coughed all night...now he's throwing up. Good grief...

Tuesday, January 01, 2008

Video and pics


Makayla under the bili light with her goggles on under her cap.


Daddy getting some snuggle time with Mackenzie.


Mackenzie's new "condo."


video

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.

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