Going Home With Agnes

Here’s the moment we’ve all be waiting for…Agnes is finally at home! We spent the whole day at the hospital yesterday doing various discharge activities. We started by giving the photo of the first bottle Agnes finished to Dr. Ahmann. He seemed pleased to receive it and promised to keep it on his work station desk for a while. As a side note, Agnes hasn’t eaten another full bottle yet, but I think she is still getting used to being home.

Jeremy and I also took a little infant CPR course at the hospital. I’m really glad we did because of Agnes’ respiratory issues. Part of the course was about how to deal with a choking infant too, which is actually applicable to Stephen so the class was really valuable! One of the more useful hours I’ve spent lately.

After the CPR class, we went back to Agnes’ little room and waited for all the peeps to come find us. We had to talk with someone from palliative care, the social worker, the case manager, a nutritionist, and Agnes’ nurse. All that took about four hours, for one reason or another. We needed to go pick up her prescriptions from the outpatient pharmacy, including vitamins with iron. No, actually it was supposed to be vitamins without iron. No, actually it doesn’t matter which, we can decide. No actually, it has to be vitamins without iron. Whatever. The pharmacists got really annoyed and finally just shoved a bag in Jeremy’s hands and told him to get lost.

Then we had to wait for all of Agnes’ medical supplies to arrive. She got an I.V. pole and one month’s supply of feeding tubes, syringes, and n/g tubes.

Then we filled out a paper for Agnes to get an RSV vaccine, but it turned out that paper was from another patient’s paperwork so the case manager took it back and shredding it.

Then finally we were on our way!

Agnes did really well in her first 24 hours home. She didn’t eat very much by mouth, but again I think that’s because of all the changes for her coming home. We got our gear together and I felt pretty comfortable giving her tube feedings and dispensing her medications. She’s been sleeping a lot. The home care nurse came by this afternoon to assess Agnes and found that Agnes weighs 6 lb 11 oz! Agnes has only spit up twice since coming home.

Last night she slept in a bassinet in our room, and I don’t think I slept much at all because I was listening to her wheeze all night! Every once in a while she would stop wheezing and I would startle awake: O my gosh, she stopped breathing! But I’m sure she just had some breaths that were actually quiet. I think tonight we will bundle her up and turn on the fan in our room. Hopefully that will disguise the sounds of her labored breathing. Her noisy breathing is normal for her, so I hope I can tell if/when she is actually in trouble!

Other than that, we’ve been super busy, fitting Agnes’ care into the other things we need to do around the house.

Stephen is handling the changes okay. He seems to be a little out of sorts but he is still mostly behaving like usual. Jeremy and I will have to make a special effort to have some alone time with Stephen so he doesn’t feel neglected.

Now here are some pictures:

Agnes is a starfish.

The nurse is removing the heart and respiration monitor leads.

Happy to have a lead-free chest.

We’re going home!

Stephen and Agnes playing on the pretty blanket Aunt Jenea made.

Agnes is home!

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!

Anyway, 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!

Seven Quick Takes: July 26

Once again I am joining Jennifer and all the fine bloggers at Conversion Diary for a Quick Takes Friday. I do it when I feel like it, okay. Don’t judge me for my sporadic linking-up.

1. I’m down to two pumping sessions! Tomorrow maybe I’ll do two again, then one on Sunday. If I’m motivated I might do one final time on Monday morning, but Agnes is coming home Monday so I probably can’t be bothered to pump after Monday morning!

2. We’re trying to get the house ready for a fragile newborn. I resurrected my trusty old housecleaning schedule and adapted it for our current house. The important thing will be to keep the carpets vacuumed and the surfaces as dust-free as possible. Agnes has some respiratory trouble. I hope we can make it clean enough for her to do okay at home! Hello, daily vacuuming! Also I need to get my life back in control. The cleaning schedule will help me stay on track and actually maybe accomplish some things around the house in the midst of caring for a toddler and a needy newborn with lots of doctors’ appointments.

3. The cats really like the changing station I set up in the guest room. I’ll probably have to kick them off the mat when it’s time to change Agnes’ diaper.

Cats (l to r): Iggi, Sashimi.

4. My husband delivers pizzas. He gets an employee discount. Apparently as his family, I get the employee discount as well. This could be trouble. In related news, dinner tonight was delicious.

5. Yesterday I wore a pretty new skirt, put on makeup, and even styled my hair before we went to visit Agnes at the NICU. I guess my effort really paid off because one of the nurses made a special trip to Agnes’ cubby just to tell me that I looked “lovely.” That’s why we ladies do it, folks. So the NICU nurses can enjoy our put-together style. No seriously, I feel a lot better these days now that I am taking some time with my personal appearance. And since Agnes is doing so well, I’m not afraid to wear mascara, and I feel much perkier when I don’t look like I just rolled out of bed and threw on a t-shirt.

6. I had my six week postpartum appointment with my OB on Wednesday, even though I was only five and a half weeks postpartum. He’s on vacation next week. I really like several of the OBs at that practice, but it seems like every OB has one question on the brain when meeting with postpartum women: What are you doing for birth control? I always tell them we do fertility awareness, natural family planning. So far I haven’t had any trouble from docs when I give this response, though I suppose I will probably get resistance as I get older. I wish they would give me a little trouble because I would love to explain the process to them and show them that it really works!

7. I really love coffee. I also have nothing else to say for my seventh quick take. So…coffee. It’s the best. I’m a cream and sugar kind of gal. I don’t like flavored creamer because it gets too sweet by the time you add enough to make the coffee creamy. And coffee has got to be strong!

 

Head over to conversion diary for some more fun quick takes! Thanks for reading!

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.

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.

What I Wore Sunday: July 21

It’s been awhile since I linked up with Fine Linen and Purple for the weekly What I Wore Sunday. It feels good to be back at it. Head over there to read the other linkers (we’ve been through this before…).

The prayers, hymns, and acclamations of the Byzantine liturgy are really beautiful. I notice a different thing every time we go to liturgy, and today I noticed a beautiful petition in one of the litanies that occur throughout the liturgy. The petition says, “For an angel of peace, a faithful guide, a guardian of our souls and bodies, let us ask the Lord.” And all respond, “Grant this, O Lord.” Angels have recently started to fascinate me, like in the past year or two. It is really neat to think about my guardian angel following me around and protecting me and leading me away from danger. A couple months ago I met a really neat young lady who has a special gift to see and communicate with angels. She told me that I have three angels! She says different people have varying sizes of angel entourages. Sometimes when I pray to my angel for intercession and help, I ask him/her (?) to bring all the available angels in to help as well. Every angel can’t be busy all the time, right? Then I imagine the room filling and filling, crammed full of angels, piling in up to the ceiling. It’s pretty cool, and it helps me remember that I am not alone and I don’t have to deal with my trials with only my own strength. 

I could have used some angelic intercession this morning because I was having the hardest time even getting out of bed! I got up to pump at 5:30am, then went back to sleep until my second alarm at 7:30am. That’s already pretty late for a Sunday morning, but on top of that, I couldn’t drag out of bed until almost 8:00! And we had to leave at 9:00 to get to church! And I still had to drink my coffee, eat breakfast, pump again, pick out my church clothes, get dressed, and do hair and makeup! “…Let us ask the Lord!”

On the steps of Holy Ghost.

Luckily I was able to do it all. Barely. I had to cram my veil in my purse and do it at church, though. Also luckily, I had already more or less decided on my outfit in my head. I picked this new top from Old Navy, a maternity skirt from Target, and my trusty Minnetonka Moccasins. The veil is my new beautiful Spanish mantilla.

I like this Old Navy top more than I expected to. Last week, I half-heartedly went shopping for some new clothes that actually fit me now that I’m not preggo anymore. I tried on a bunch of shirts that did. not. work. and finally passed the table full of henley tops on my way to register. The style looked like it might work for me, so grabbed one in the size I thought was best and bought it without trying it on. Good for me, it fit. The neckline is a little more revealing than I prefer, but it still qualifies as modest.

That skirt. I really need to stop wearing it because it was just a teensy-tiny bit too large when I was pregnant, and now I’m not pregnant. Plus there is something about it that table corners, furniture arms, staircase railings, and my walking feet find really attractive. One good tug and this thing will be long gone. I tempt fate every time I wear it. I know this, and yet I keep wearing it. “….Let us ask the Lord!”

My moccasins. O how I adore thee. Amen.

The veil. I’m still the only lady who wears a veil at church. I actually expected someone to ask me about it, but so far, no one has mentioned it. I guess no one really cares. Whatever. I really enjoy wearing a veil to church so I’m going to keep doing it!

After church we all trooped over to the hospital to visit Agnes. She was moved twice this week, first to the sub-intensive room, then to a semi-private room in the TLC section of the NICU. More and more, people are talking to us about when we take her home. No one has given us a specific date, but it will be soon. Possibly even this week!

Jeremy and I have to learn a few things before we can bring Agnes home. First, she is definitely coming home with an n/g tube. We have to learn how to put one in and how to care for it, keep it clean, and make sure it stays put in the right place. The nurse showed us how to put one in and we took turns listening to Agnes’ tummy with a stethoscope to verify that the tube was down in her stomach where it belongs.

Second, we have to learn how to administer feedings through the tube. This will involve a syringe with tubing that connects to the n/g, and possibly an electric syringe pump unless we can talk the doctor into letting us try gravity feeding.

Third, we have to learn how to draw oral medications into a syringe and administer them through the n/g. We will also have to learn how to crush a pill into small enough fragments that Agnes will either be able to suck them off a finger or the pieces have to fit through the n/g.

Fourth, the doc may send her home with caffeine as one of her medications. Caffeine helps little babies regulate their breathing and take deep breaths. If Agnes comes home on caffeine, she will also need continuous monitoring of her heart rate and respiration rate. We would get a little battery powered monitor that we would have to pack up and take along when we take Agnes out of the house.

Now that we’ve started getting information and training for going home, I really think we’ll be out of there in a week. Next Sunday I may be able to feature Agnes in What I Wore Sunday! Here’s hoping!

Jeremy took this pic while he was holding Agnes. Them’s skilz.

What I Needed to Hear

I heard this song on the radio just as I pulled into the hospital parking deck. It’s just what I needed.

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!

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.

And 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!

The Sweet Little Peanut

Agnes and me. She is only hooked up to a monitor and a n/g feeding tube in this picture!

Agnes is doing well. I think the doctors are surprised, but in a good way! She is disconnected from all I.V. fluids and medications now, as of yesterday morning! She is getting all her nutrition from breast milk, fed through a little tube that snakes through her nostril, down her esophagus, and into her stomach. Starting yesterday she also switched from a continuous feeding to what the medical peeps call “bolus” feeding. That just means they give the milk quickly. For Agnes, they have started by giving her the full amount over two hours with a one-hour break before the next feeding. She is tolerating this change well, and today they increased her food which was also just fine for Agnes. In a couple days they will try feeding Agnes the full amount over one hour with a two-hour break between feedings.

Today Agnes seemed to be working a little harder at her breathing than she was a couple days ago. The doctor listened to her breathe and didn’t detect any congestion in her lungs or any other possible cause, so they will just watch Agnes and see if she improves. They did talk about possible interventions, but I’m glad they opted to leave her alone. She is maintaining a good oxygen saturation level, so she doesn’t really need help, but of course the docs want to make sure she is comfortable and happy. They did decide to give Agnes a dose of caffeine, which seems like an odd treatment, but a lot of the NICU babies get it. Supposedly it helps the tiny babies with breathing. The doc thinks it might help Agnes take big deep breaths. As far as I could tell, all it did was make Agnes stay awake and alert for the entire afternoon while my mom held her, my dad held her, I attempted to get her to breastfeed for 25 minutes, Jeremy held her, then I held her again, then put her in her bed when my arm fell asleep…and she was still awake and alert when I left for the evening. Yay, caffeine. I did offer to the doctor that I would be willing to drink more coffee so Agnes could get naturally caffeinated breast milk, but I think the doc thought I was joking.

It really looks like Agnes might be on the launching pad for coming home. I think she will be out of the NICU in a week or maybe two at the most. If there are no setbacks. All she needs to do at this point is keep gaining weight, start maintaining her body temperature better, and be able to eat by mouth. And even the feeding can be fudged a little since the doc told us she would be willing to send Agnes home with a feeding tube. I don’t want to deal with a tube! I think Agnes will be able to suck; she did okay when I tried her at the breast this afternoon. She really made an effort for a long period of time, and I could feel that she was sucking a little. She wasn’t effective, but this is only her second attempt. Even if she can’t make it at the breast, I’m confident we can at least find a bottle she can use.

She’s a sweetie, and she is defying expectations. Go Agnes!