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.

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!

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.

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...

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."

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.

Another step in the right direction

Woo-hoo - Makayla's off the CPAP, for the time being. Don't be surprised if she's back on it tomorrow...but for today...yay! She is on nasal canula oxygen, and she maintains her oxygen level quite well, but she tends to work hard to breathe, so she may need to go back on the CPAP. Her CRP (measures for infection) decreased today, which means the antibiotics are working - another yay!! Her bilirubin has continued to increase (causing jaundice), so she started phototherapy today - she's working on a suntan under the lights. :) She's still not being fed - maybe tomorrow if she continues to improve. Her chest x-ray was fine. Her echocardiogram shows two holes in her heart - but both are very common in preemies. For now, they will just keep an eye on them; if they don't close on their own, surgery may be in her future. Apparently they still don't know what's causing the irregular rhythms, but they are giving her some IV calcium and sodium bicarbonate to try to get her electrolytes better balanced to see if that helps.

Mackenzie has graduated from an open bed to a "condo," aka isolette. Even though it sort of looks worse in the pics, it's actually a good sign - it means she's not as critical and they don't need such immediate access to her. She only lost 6 grams yesterday, which means we can hopefully expect her to start gaining now (all babies lose a certain amount after birth, but so far her loss has been very minimal). She is having some "residuals," which means there is still undigested milk in her tummy 3 hours after her feeding, that they have to suck out with a tube. This afternoon they had us give her Pedialyte for her bottle feeding instead of breastmilk, b/c she had too much residual left from her previous feeding. I think this is just caused by an immature digestive system. Her labs look great - no signs of jaundice or infection at all. Darrell got to hold her for a long time this afternoon after I did her bottle feeding. She was very sleepy and looked so content in his arms.

This morning I had to take my dad to the emergency room, as he was having chest pain and was in atrial fibrillation (for the 3rd time in the last couple months). Fortunately, all it took was some IV medication to correct the heart rhythm, and he was released a couple hours later. He is scheduled to fly home next Saturday, 1/5/08, so we pray his heart doesn't act up anymore and that he can have an uneventful trip home.

I am continuing to struggle with pain and extreme fatigue. Just walking from the parking lot into the hospital today was almost more than I could manage. I'm hoping that a few more nights of good sleep will help; if not, I'm going to call the doc later in the week to have them recheck my hemoglobin level. I was very low going into delivery, and even lower afterwards. My doc talked about doing a blood transfusion, but was hesitant for fear I'd have a reaction, so ended up just putting me on iron 3x/day. But it may just not be adequate - we'll see what happens.

Pictures

Makayla right after birth...

Makayla on 12/28/07...

Mackenzie on 12/28/07...

Daddy holding Mackenzie on 12/28/07...

Daddy and mommy, with mommy holding Makayla (you can really just see her hat, which is ivory and pink, and her tubes...we were doing our first skin-to-skin time (also known as kangaroo care).