Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

What I Wore Sunday: August 11

sunday 8-11-13I bought some new shoes on Thursday and I just love them! I designed my outfit to coordinate with the shoes. I don’t know that I was wholly successful, but at least nothing clashes! I’m wearing that skirt again despite myself, but I’m holding it up with a tight-fitting tank top that grabs the waist band of the skirt and prevents it from sliding. That doesn’t take care of the feet grabbing danger, but at least I know the skirt won’t fall off–even though I keep snagging my feet on it as I walk.

Shoes: Esprit

Skirt: Liz Lange Maternity at Target

Tanks: black tank underneath from Motherhood Maternity; blue tank from Old Navy

The outfit isn’t actually that flattering, but I wanted to not be sweaty for a change this week, so I wore tank tops. I don’t generally go sleeveless to church, but I was wearing my long mantilla so my shoulders were covered. That is, until my veil fell off halfway through the liturgy. I must have done a poor job pinning this morning. Plus Stephen kept demanding to be held at church and that didn’t help my veil remain secure either.

There was a baptism at church today, the first one I’ve seen in the Byzantine Rite. It was pretty neat. There is a strong emphasis on renouncing Satan and evil, and the sacraments being protection against evil. I kind of liked it. In the Eastern Catholic tradition, babies receive all three sacraments of initiation at once: baptism, chrismation (confirmation), and Eucharist. I didn’t get to watch when the infant received communion, though I wanted to see what it looks like because it doesn’t seem possible to feed a baby something strange-tasting. I also wanted to see how it’s done because I’m not totally sure Agnes could even do it right now, so I wanted to watch and see what’s involved. Alas, the baby stayed in the pew and Fr. Sal came down to the family so I couldn’t see around all the other bodies between them and me.

Jeremy and I want to set a date for Stephen and Agnes to complete the sacraments. They are both baptized, but we want them to receive chrismation and Eucharist as soon as is feasible. I’m sure there must be a way for that to happen in the Byzantine Rite; I’m sure we’re not the first family to come from Roman Rite to Eastern Rite and want the rest of the sacraments for our young children.

Just a quick Agnes update: she weighed 7 lbs 8 oz on Tuesday last week, and the home care nurse is visiting tomorrow so we’ll have an updated figure. Agnes has not be spitting up quite as much the past couple days, though her more recent spit was fairly dramatic. I’m hoping she continues to spit only once or twice a day, or less! I hope her medications aren’t causing the spit; yesterday and today the only time she spit was after the feeding that includes her two medications. I’ll see if she repeats again tomorrow and maybe call the doc if I notice a trend.

In other children news, Stephen is adorable about Agnes. Just a quick example: I sat down on the couch with Agnes, in the spot I usually sit to do her feeding. Stephen brought over the pillow I always use to help position Agnes and said, “bottle. Baby Agnes. Bottle.” He always calls her “Baby Agnes,” which is getting better pronunciation: now it sounds like “Baby Annis.” So that’s an improvement.

I’m linking up with Fine Linen and Purple as usual on a Sunday. Head over there for more posts!

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What I Wore Sunday: August 4

Hey everybody I’m linking up with Fine Linen and Purple again! It’s fun!

Today we took Agnes to Divine Liturgy for the first time! The nice folks at Holy Ghost have been praying like nuts for our little peanut (did you see what I did there?). Votive candles have been lit, “mass intentions” have been requested–though I don’t know what they’re called in Byzantine rite–, and many personal prayers have gone up for our sweet Agnes. It was my honor to take her to meet everyone at Holy Ghost today! She repaid the honor by fussing during the entire liturgy! In typical infant fashion, I guess. Anyway, everyone was so ¬†happy to see her, and everyone said how cute she is, how beautiful she is. Even though this is what I think:

Totally Looks Like

But in a good way, I assure you. No really, I think she’s adorable! Just in an alien-type manner.

It was extremely sunny this morning!

It was extremely sunny this morning!

For this special day, I selected special outfits for the kiddos and we even got a full family photo.

Stephen and Agnes are wearing coordinating “Big Brother” “Little Sister” shirts. You can’t really see them because my picture is so poor. I’m sorry; you’ll have to take my word for it that the shirts are cute! Agnes is wearing newborn size “skinny jeans” and those are about as ridiculous looking as you imagine they are. Also her socks have teddy bear shaped gripper treads on them. So cute! And so useless on a pair of infant socks, but whatever. They’re cute!

My outfit consists of another one of those henley tops from Old Navy and a skirt I found on clearance at Lane Bryant. Why is it so hard to find long skirts these days? This skirt I’m wearing was the only long skirt on the rack that was my size. It’s a good thing I liked it! You can’t see my shoes but they are a coordinating shade of pink with flowers on the toes. I’ve worn them before for all y’all.

Just a quick Agnes update for those of you who are following along. She is doing really well at home. I think she is starting to breathe easier: not as much squeaking and wheezing compared to last week. She also had a real setback where it comes to eating from a bottle. Thank God she has a feeding tube, otherwise she would be wasting away. I think she was just adjusting to being home. Today her feeds started to pick back up. She took as much as 30 ml from a bottle this afternoon. Hopefully it won’t be long before she can regularly eat most of her food by mouth instead of by tube. Finally, she is starting to be more fussy. I know, this doesn’t sound that great, but it is because it is actually normal baby behavior. She demands to be held if she is awake in her bed. She starts to get cranky if it’s almost time to eat. She is also being awake more compared to last week. She was awake for most of the morning today. It was a nice change for her. Her eyes are really pretty so I’m happy when she keeps them open for me!

Thanks for reading. Head over to FLAP for more link-ups.

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What I Wore Sunday: July 28 Baby Eve Redux

Six weeks ago I linked up with Fine Linen and Purple for my “baby eve” what I wore Sunday. That time six weeks ago, I was headed to the hospital for Agnes’ birth. Today I’m linking up again for my “baby eve” because tomorrow we are finally bringing Agnes home for the first time! Tomorrow will be her first time breathing fresh air, riding in her car seat, meeting the pets, and sleeping at home. I won’t lie: I’m really extremely very nervous. But also excited! Tomorrow will be a whirlwind of talking to all the hospital folks I have been trying to speak to ahead of time, getting last minute instructions, taking a baby CPR class, picking up medical equipment and verifying medication instructions. Hopefully we’ll get her home before Stephen goes to bed!

100_1700Anyway, in honor of today being “baby eve” again, we did the photo at the hospital in Agnes’ little room!

I was wearing my black mantilla for church, but I took it off after liturgy and didn’t put it back on in the hospital. Other clothes:

Dress from the Goodwill store in Billings, MT. I think it might be Coldwater Creek, but don’t quote me. Neato detail: the dress is reversible. The other side is yellow with large red flowers. You can kind of see the flowers peeking through if you look closely at the picture. Another neato detail: this dress is technically part of my “pre-pregnancy” wardrobe. It was a little tight; I almost thought I wanted to change clothes but it wasn’t bad enough for me to bother. I decided to wear a dress today to celebrate the fact that I am done with that infernal breast pump. I did one final pumping this morning and now it is packed away, hopefully for a very very long time.

Black sweater from Target many years ago. I like that it covers my shoulders and arms without being a warm sweater. I can wear it in July.

Minnetonka Moccasins. Did you even need to ask?

Agnes is wearing a cute sleeper by Carters. It has little zebra faces on the feet and a patch that says “mommy loves me.” It also features built-in mittens which is why you can’t see her hands in the photo. In the picture, Agnes is wearing heart rate and respiration rate monitors which are connected to the screen by that thick blue cable. I will be very happy when I don’t have to thread wires through the buttons and zippers of her clothes. Plus it will make diaper changing a lot easier when I don’t have to be careful of the wires when her diaper is open and she is frantically kicking her legs.

In other Agnes news, she ate an entire bottle for the first time ever this afternoon! I was worried she wouldn’t eat anything because she was super mad when we were getting started. It took about five or seven minutes for her to calm down enough to even think about sucking on the bottle. After a couple false starts she finally did take it and begin drinking. She dribbled a lot while sucking, but the couple times I tried to take away the bottle so she would have a chance to swallow the milk in her mouth, she didn’t let me remove the bottle! She really wanted to keep going. After she finished, she looked pretty worn out! I expect her progress will continue to be slow; I’m thinking she might drink one full bottle for every 24 hour period for a few days, maybe a week. After that, she might gradually start adding full bottles to the count until she can finally eat exclusively by mouth. That’ll be the day!

I asked the nurse to snap a photo of Agnes with her empty bottle. I’m totally giving one to Dr. Ahmann, he who doubted Agnes could do it.

Next week we can all go to church as a family! That will be really fun. All the nice folks at Holy Ghost have been praying for Agnes and asking me every week how she is doing. It will be fun to show her off to our parish!

100_1703

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Totally Boss Weaner

Let’s just be clear about one thing, unlike many of the moms whose babies are in the NICU, I am weaning from the breast pump intentionally. Many women who try to pump for an extended period of time find that the pump just doesn’t do the job at sustaining a milk supply. The milk eventually stops on its own. My supply was okay. Agnes was eating a little more than I was able to supply but I did have a two week head start, so she has eaten only maternal breast milk while in the NICU. My decision to wean from the breast pump is a totally personal decision based on my deep-seated hatred for my breast pump and the activity of using it.

Don’t think this decision has been easy for me: it hasn’t. I still feel a pang of sadness whenever I think about not nursing Agnes, which I think about at least once an hour throughout the day. But the truth is, I was pumping to supply breast milk which is the best food for newborns, but also to keep myself ready to nurse Agnes when she was ready to nurse. However, seeing how she struggles to eat by mouth made me think that perhaps it will be months before she is strong enough to nurse. I can not pump for months. I loathe pumping. In addition, I do not want to confuse Agnes by attempting to nurse in alternation with attempting to bottle feed. She is having enough trouble just succeeding at one of those! As bottle feeding is the more sustainable option, that is what I have decided to do for her. And one further thought: Agnes’ growth is of great interest to her doctors so it seems to me that it would be extremely important to know exactly how much she is eating. That would be impossible to measure if Agnes were nursing.

Having said all this, I would just like to brag that I am an extremely successful weaner. I have been gradually reducing my time with the pump for about a week, and my milk is almost totally done. This is exciting for me because I won’t have to pump anymore and I can focus my time on my children where it belongs. But this is also sad for me because it really means I will never nurse Agnes.

A great time to relax and enjoy a machine sucking on your boobs. Not. And it is actually not possible to do one-handed.

Here are my tricks for successfully weaning from a breast pump.

First, rent the pump from the hospital that is so ineffective that it is borderline broken. That’s the one I rented and I have a feeling it played a large role in developing my hatred for pumping. I tried telling the lactation consultant that one side of the pump doesn’t suck as well as the other, and her solution was to give me new tubing to connect the pump to the collection containers. I actually think it worked even worse after I put on the new tubing, but that may be an error in my observation. Also, an ineffective pump really helps the weaning go quicker! [Note: it was my individual unit that probably needed repair. The unit I used at the hospital worked just fine! I am not maligning this brand of breast pump! k thx]

Second, gradually add more time in between pumping sessions. Go for three hours in between, then four and a half, then six. It might be uncomfortable to start, but your body will adjust.

Third, try to pump only to ease the pressure a bit. This is hard to do; for my own experience, once I sat down to pump I wanted to make it worth my while. But it is important to leave milk behind to signal your body to stop making more milk.

Fourth, remind yourself how wonderful it will be to not have to pump throughout the day! Think of how much time you will have to spend with your family, accomplish things around the house, and run errands that don’t have to fit in a two-hour window.

My goal is to be totally weaned by Monday. Agnes is coming home on Monday! She will come home with an n/g tube because she is still not ready to totally feed from a bottle, but she will not have any other medical/equipment needs besides the feeding tube! I’m pretty excited about that. I’m looking forward to hanging out with my two kids at home together, playing with toys and reading stories. And all that other baby stuff. And feeling like a real family for the first time since Agnes was born.

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Believe in Miracles

I never thought the day would come so soon that the doctor starts talking to us about Agnes’ discharge date. He told us today that Agnes would be ready to leave the hospital by the end of the week, but because they need to monitor her for a week after stopping caffeine, she won’t be ready to leave until Monday, a week from today. That’s okay! I’ll take it!

Now that we’ve decided for sure to take Agnes home with an n/g tube for feeding, things are moving quickly. We still need to finish the n/g training and we need to get a bunch of discharge instructions, but for the most part we are ready. Also now that the pressure is off for Agnes to eat an entire feed from a bottle, she has really stepped it up. The nurse last night got Agnes to eat as much as 35 ml! This morning I got her to eat 25 ml, and the nurse repeated that at 1:30pm. Earlier this evening Agnes had a physical therapy session right before eating, so she only¬†took 11-12 ml. Let’s all recall for a moment that yesterday she would not eat more than 5 or 6 ml from a bottle. This turn around is a true miracle.

Unfortunately, Agnes’ doctor is still telling us he is doubtful that she will be able to take a full feeding from a bottle. Dude! The evidence is right before your eyes that she is improving. Why do you think she will not continue to improve? Can we all please say a prayer for him? His name is Dr. Ahmann and I hope he doesn’t read my blog! (Or maybe I hope that he does…) My prayer for Dr. Ahmann is that Agnes will open his heart to believe in miracles, and to believe that every baby under his care has the chance to defy expectations. So there!

Dr. Ahmann did make some positive changes in Agnes’ care in order to prep her for coming home. I didn’t expect so much all at once (another miracle?). Today they took Agnes off caffeine which she was taking to assist breathing evenly with deep breaths. This is a great move for us because if Agnes had come home on caffeine, she would have needed continuous heart rate and respiration rate monitoring. Also today, they changed Agnes’ food from 27 cal per ounce to 24 cal per ounce since she has been gaining weight like crazy! This recipe will be easier for me to supply at home, plus it will make tube feeding much simpler; the 27 cal needs to be pushed through the tube by an electric pump because it’s a very thick liquid. The 24 cal can drip by gravity and flow easily through the tube. This change means we will be able to feed Agnes through her tube by hanging a syringe on a rack, and we won’t have to rent and learn how to use the pump! Score!

It was a big day for Agnes.

Agnes has been in the NICU for 35 days, and will be in for another 7 at the most, if everything continues to proceed without trouble. There have been so many highs, many more lows, and lots and lots of uncertainty. Just when I think all hope is lost and I get discouraged, Agnes makes a huge leap or we get some good news from a doctor. There have been many little miracles during our time in the NICU. None of Agnes’ bowels died before that surgery could be completed. The surgery went perfectly. Agnes’ airway turned out to be not as in danger as we had feared. She tolerated the switch from ventilator to Vapotherm. She was only on Vapotherm for a week. She tolerated the increasing feeds. She is responding very well to physical therapy. Agnes smiles. She is starting to eat more from a bottle.

I can’t wait to see what Agnes has ready to impress us next.

As Jeremy told me recently, it is a miracle just that she is alive.

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Moving On Back

So on Tuesday morning before the crack of dawn, Agnes was moved from the front room of the NICU back to the fourth room, which is technically the sub-intensive care room. This evening she moved again: even further back in the unit to the TLC rooms. The TLC rooms are like private alcoves with a folding partition that you can use to either leave the room open or closed off for privacy. There are three nurses for the TLC group of rooms, six patients total, and I guess they mostly just leave the families alone unless it’s time for nursing care. It is my understanding that Agnes will be discharged from this room when she is ready.

I’M PRETTY EXCITED!!!!

I still don’t know exactly when she will be discharged, but the end is definitely coming near. It is looking more and more like she will come home with a feeding tube, but I think she will eventually be able to eat from a bottle. We have been offering a bottle at most feedings since Monday, and she has only taken 5 ml on average. Yesterday the day nurse had a bit more luck: Agnes ate 10 ml for the nurse a couple times, and about 10 or 11 ml for me in the early afternoon. She didn’t really eat from a bottle overnight from what the nurse told me this morning, but at her 10:30 feeding, Agnes took a whole 17 ml from a bottle when I fed her! I guess they didn’t offer a bottle at 1:30, and she only took 7 ml at 4:30, so to make a long story short, who the heck knows when Agnes will be able to eat a full feed–50 ml–from a bottle?

My thinking is, if she is ready to come home in every way except the feeding, I’ll take her with a tube. At this point, I want her home as soon as possible, even though I get kind of nervous when I think about caring for her without the medical staff around; without handy heart rate, breathing rate, oxygen saturation monitors; without emergency medical attention available in the next room. How will I know if her O2 level drops dangerously and suddenly? What if she doesn’t fuss enough and I sleep through her 1:30am feeding? I don’t know what a yeasty rash looks like, so how will I know when to use the special butt cream they have for her? What if the cat smothers Agnes while she naps? What do I do if her n/g tube falls out and I can’t bring myself to stuff 24 cm of plastic tubing back down her nose?

Seriously, that last one is a biggie because I can’t even manage to spritz saline nose spray up my own nose if I have congestion. I sit there with the tip of the sprayer up my nostril and I just can’t pull the trigger. I don’t know what it is. It really freaks me out.

Plus since Agnes has her own special kind of trisomy disorder, I have no idea what I need to be concerned about or what precautions I need to take. Is she going to be more susceptible to infections? Do I need to take extra care sanitizing surfaces and sterilizing bottles and other things she uses? How concerned about her weight will I need to be? Maybe she’s not supposed to grow at a normal rate because of her genes. Will she have lots of allergies? Do I have to worry every time she sneezes? Can I wash her clothes and bedsheets with the same laundry soap I use for the rest of the family or is her skin too sensitive?

My big hope is that Agnes will be more or less like a regular kid for me when it comes to the day-to-day activities. I know she will have lots of appointments with assorted therapists, and she will take several special medications, and I will have to be mindful of her predicted developmental delays, but I’m hoping I will be able to treat her like a regular baby for the most part.

I think it will be good for me to help care for Agnes now that she is in the TLC room at the NICU. It looks like a fair approximation of home, with less intrusion from the nursing staff. I’m even planning to take some clothes from home for Agnes to wear!

Hopefully we can get some new pictures of Agnes soon. Our real camera ran out of battery power and we can’t find the charger! We’re stuck with blurry snaps from Jeremy’s cell phone camera, but the NICU rooms are so dim because of the sleepy babies that any photos turn out quite poorly. Anyway, I’ll see what I can do to get some more current Agnes pics up on the blog!

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Time to Eat

Agnes has been doing well the past couple days. On Monday we pinned down the doctor and got her to say Agnes would be coming home in “one to two weeks.” Late Monday night/early Tuesday morning Agnes was moved back in the NICU to the sub-intensive care section, which means everyone thinks she is stable and getting closer to going home. Also on Monday we started trying to feed her from a bottle. She did really well the very first time, but every time after that she has not done well at all. She sucks a couple times, dribbles almost all of the milk out, spits up a lot, then gives up and won’t take the bottle any more. She is starting to do okay with a pacifier, so maybe she just needs a lot of practice with sucking. Babies need a lot of coordination to get the sucking and swallowing together well enough to actually eat. Plus Agnes was in a drug-induced stupor for the first two weeks of her life, so she really is like a newly born infant learning to eat. Plus we know Agnes is going to have developmental delays, and this is probably our first real observable delay.

She is also back in the isolette. She only stayed in the crib for a day before the docs put her back. She couldn’t hold her temperature. They are gradually turning down the heat in her bed, so maybe they are thinking to try her in a crib again soon.

There are really no more medical interventions they can do to get Agnes home sooner. It’s all up to her. She needs to hold her temperature and eat from a bottle. The docs have talked about sending her home with a feeding tube just to get her home sooner, and I am pretty sure I don’t want to fuss with that! But after watching Agnes struggle for three days to get hardly anything from a bottle, I think it might be a reality for her to come home with a feeding tube. She may still get the bottle thing–the last feeding I was around to see today went a bit better with Agnes drinking about 10 ml from the bottle before she quit. That’s up from the usual 3 or 5 ml that she was doing before.

In other news, I have decided to quit pumping for breast milk. Honestly, it is the main thing that stresses me out and makes me break down crying. I also worked out that I spend about 5 hours a day on pumping and pumping-related activities. That adds up to be equivalent to a full-time job. I feel like the pumping is stealing time away from Agnes, time away from Stephen, and time away from my other duties as a housewife. Sometimes I think I go to the hospital to pump my breasts, not to see Agnes. I usually only have a few hours at a time to spend at the hospital, and by the time I get there and get down to the NICU, it’s almost time to pump so there’s no point in getting Agnes out to hold since I have to leave so soon. Then whenever I do have time to visit Agnes, the nurses need to do stuff to her, or the physical therapist wants to work with her, or whatever. I can’t keep pumping when it causes me so much stress and heartache. I know “breast is best” and the milk is much better for Agnes than formula, but she may not be able to nurse for months, if ever. I can’t keep pumping for months just to be ready for her when she is ready. I don’t have that kind of time to spend with a machine that takes me away from my children.

The NICU operation really pushes moms to pump breast milk for their sick babies, which is fine. I get that they want to set babies up for nursing. But for long term patients, it is so hard on the moms to sustain pumping. I was talking with some other NICU moms who are having the same experience. We all feel pressured to keep pumping at the expense of time spent with our babies. Except there are folks talking to us from the other side saying we need to be doing “kangaroo care” every day for as long as possible. I’m sorry, but how exactly am I supposed to hold my baby for at least 90 minutes and still pump every two hours? Not possible. Not possible. No wonder I feel like crying all the time. So I’m going to quit and Agnes will just have to get used to the taste of formula when the breast milk runs out.

So, in case you missed it amidst my rambling, what I really hope and pray for right now is for Agnes to start being successful at eating from a bottle. That’s the most important thing right now.

stephen at hospitalAnd in conclusion, here is a picture of Stephen, lest he be forgotten. Isn’t he adorable? He is a little parrot these days, mimicking everything we say including tone of voice. He knows some colors which is apparently very precocious. His animal sounds are the cutest ever. He also has recently learned a very advanced concept. To illustrate, he will walk up to me and point at my face and say “no glasses” even if there are no glasses-wearing people around for comparison. He also pointed to my wrist and said “no clock” because I wear my watch on the other arm, which he couldn’t see at the time. He’s a genius, adorable child!

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