Laughing, Weeping, Living

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

The Reasons Why

I just realized today that my last several posts have been about everything except my infant in the hospital. Agnes has been in the hospital this time for just over three weeks, and she isn’t going to come home until early next week. We are back in the routine we established when Agnes was in the NICU: wake up and get ready for the day; go to the hospital; stay as long as we can until Stephen gets bored and loses it; come home for the afternoon; putz around the house; maybe go back to see Agnes after Stephen goes to bed; sleep; repeat.

Actually, for the past week, I haven’t even gone back at night to see Agnes for a couple hours after Stephen goes down for the night. I just can’t. I’m burnt out on hospital.

I’m sick of the hospital. I don’t remember what life was like when we didn’t have to go to the hospital every day. I don’t remember what it was like to have Agnes at home. Every time we drive somewhere, Stephen thinks we are going to visit “baby Agnes.” He has a routine when we arrive at the hospital. He pushes the button to open the automatic doors from the parking deck into the hospital building. Then he runs over the pedestrian bridge across the street. Then he has to touch three things: the giant rubber ducky art made out of gum balls, the 3-D timeline of Children’s Hospital history, and the portraits of the “doggie brigade” therapy dogs. Then he says, “horse, horse,” when we walk up to the horse sculpture. Then he gets a sticker at the information desk. Then we go up to Agnes’ room.

I don’t want my son to have a routine about going to the hospital.

Another thing that is happening to me with Agnes being in the hospital is I don’t feel connected to her anymore. She doesn’t feel like my baby, and I don’t ache to see her and hold her anymore. It gets less and less hard for me to leave her room every day. Of course I’m concerned about her, and I want her to come home, but I feel really detached from her on an emotional level. I do her care when we are with her, and I want her to be comfortable. I get irritated on her behalf when I can see that she is uncomfortable because of a dirty diaper, or her swaddle is tangled, or she has slipped into a strange position in bed. I want to fix those things. But I don’t feel a connection to Agnes like what I think of as a “normal” mother-baby connection.

It’s very hard on my family to have Agnes in the hospital and being medically fragile. I think the stress of that situation has just finally worn me down. I can’t think about it, and the more time I spend at the hospital, the more worn down I feel. I’m starting to resort to coping mechanisms more. I watch stupid T.V. programs in the evening and I let Stephen watch more T.V. during the day. I need to drink multiple cups of coffee to keep going during the day. I need to take naps more often than I used to. Instead of one beer with dinner, now I sometimes have a drink with dinner and another one later in the evening.

Finally, another reason why I haven’t been writing about Agnes is nothing is really happening. She is stable and her condition is pretty much unchanging. The amount of oxygen she gets changes every time we go there, but she usually gets around 30%. Her trach and g-tube sites look good and healed. She has the most horrible diaper rash I have ever seen ever. The doctor even prescribed a cream they use in the burn unit to heal peeling, excoriated burn wounds. Maybe her butt is looking better today. Maybe. But other than the rash, she is doing fine. Our caregiver training is nearly done. We all need to take a CPR class on Saturday, then we all get to do our 12 hour stays. My parents will do theirs 6 hours plus 6 hours over the weekend, and Jeremy and I will do 12 hours on Monday. Tuesday is Agnes’ tentative discharge date, depending on whether we can get the last two shifts covered for nursing assistance.

I will be relieved to have Agnes home. Maybe when she is home I will start to feel more connected and caring toward her again. It will be nice to not go to the hospital every day.


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!”

sunday 7-21-13

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.


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 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.

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!


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!


Respiratory Ninja

Ha ha, that title has nothing to do with Agnes, but it’s a good story. There are all kinds of specialized staff in the NICU: nurses, nurse practitioners, neonatologists, respiratory therapists, the transport teams who bring babies to the NICU from other hospitals, the laundry guy, the woman who only delivers the I.V. nutrition bags, and many others. Anyway, there was a woman in a transport team jumpsuit puttering around the room while the nurses were taking care of patients and charting. I guess the transport people are mostly skilled with respiratory care–the ventilators and oxygen supply and stuff. Well, the nurse was charting away at her computer, and the transport woman was puttering around. Then suddenly the transport woman announced that she had adjusted the settings on a baby’s ventilator while the nurse was busy, and now the nurse didn’t have to worry about it. The nurse thanked the transport woman, and the transport woman declared herself to be “like a respiratory ninja.” It was great.

Anyway, you come here to read about Agnes, not the goofy nurses who work at the NICU.



The update with Agnes today does have to do with respiration: she is off all breathing assistance as of this morning! She is breathing totally on her own, with no Vapotherm, no additional oxygen, and no help with air pressure! This is really amazing to me because I was sure she would not be able to do it. I know, I know, where is my faith? She had so much trouble in her first few days that I was sure she would need help now. But a few weeks really made a difference for her. I forgot that while she was technically a “full term” baby, she was still only 37 weeks, and there is a lot of development that happens right up to week 40. Her lungs are probably better able to handle breathing, and she is also stronger and bigger now which helps. I have learned my lesson with this one. I will believe in Agnes every step of the way from now on, I promise!

Agnes is also happily installed in her big girl bed, complete with rail-mounted light up music thing which I have never witnessed her even looking at. Well, I’m sure she will notice it eventually. Agnes is having a little trouble keeping warm enough now that she is out of the isolette. I’m sure she will settle in soon, but for the time being she is wrapped up in a t-shirt, and sleeper, and a swaddling sleep sack. The nurse might give her a little hat or something to help, but she won’t go back in the isolette; I did ask about that specifically and the nurse said Agnes would get to keep her crib.

Now that Agnes doesn’t have all that tape and tubing on her face, I can really see what she looks like. She’s a cutie!



Agnes Makes Progress


Agnes with a Broviac I.V. in her head, and the Vapotherm nasal cannula.

The past five or six days have been very eventful for Agnes. She got off the ventilator and on to Vapotherm, a C-PAP like machine that supplies air pressure and oxygen as the baby requires. She started out on Friday at 6 LPM of pressure, and this morning she was down to 2 LPM. She was struggling a little bit when I saw her this morning, but they had cranked her down only an hour prior to my visit and she was still getting used to the new settings. I think she’ll be doing better by the time I go back to visit later today. The hope is to get her off all breathing assistance by the end of the week. I think she’ll make it, but only Agnes knows the truth! We’ll see how she handles each change in her treatment.

The other major change in Agnes’ care is her feeding is increasing pretty quickly. She started out on all I.V. nutrition while she was recovering from surgeries, and they finally introduced milk on a continuous drip through a feeding tube early last week. She is up to 11 ml/hr of milk, which means the I.V. fluid is reduced to 5 ml/hr. I think the goal is to get the milk up to 15 or 16 ml/hr so they can discontinue the I.V. altogether. That should also be accomplished by the end of the week. Once Agnes is up to the full amount of milk, they will start phasing her away from a continuous drip and more towards a feeding schedule. They will give 3 hours worth of milk over a period of 2 hours, with a 1 hour break. If that goes well, they will shorten the amount of time it takes to dispense 3 hours worth of milk, until Agnes is getting an entire feeding in a very brief amount of time.

When Agnes is finally free of all breathing assistance, she can start trying to feed by mouth. We will try her at the breast, and also see if she will take a bottle or suck on a pacifier. This is the part that is totally unknown right now. She has tongue tie and the recessive jaw, both of which may hamper her ability to suck effectively. Personally, I’m not at all sure she will be able to nurse at the breast, but I am confident she will be able to drink from a bottle. The alternative is she will be sent home with a feeding tube, either the kind that threads through the nose and down the esophagus, or the surgically installed kind that goes directly to the stomach. I really really hope that is not necessary!

Agnes is still gaining weight; she weighs almost 5 1/2 pounds now. She is maintaining her body temperature well, so they are moving her out of the isolette today and putting her in a crib! She can even start wearing shirts!

Yesterday Agnes got some cute little hand splints. These will help train her wrists and fingers into a more relaxed, straight position. Right now her wrists curl in toward her forearms, and her fingers are like little claws. She will open them if you work with her hands, but the splints will help get them into a straight resting position so you don’t have to work at it. The therapist said it’s good that Agnes can open her fingers enough to grasp something–she does have movement with her hands and fingers. Agnes will be able to open her hands with therapy, but it will probably take a few years with splints and stretching exercises.

The doctor told us yesterday that she did some more research about Agnes’ genetic condition, and she couldn’t find any cases in the literature where the children lived longer than 11 years. She was quick to say that this doesn’t necessarily mean Agnes will not live past 11, just that no cases where the kids lived longer were ever written about and published. The doctor also said people are living longer and longer with conditions that used to have early mortality, so we shouldn’t be discouraged. It’s hard not to be discouraged when the doctor tells you your kid will probably die as a teen or sooner, and I’m still not quite to the point where I can accept that news. The truth is Agnes has a super rare anomaly with her chromosomes, and no one is quite sure what it will mean for her long term. I’ll go ahead and tell you what it is. I hesitated before because genetics are kind of personal, but Agnes has the opportunity to educate others and help shed light on a condition that currently has very few known facts. Agnes has a partial trisomy of chromosome 16. Chromosome 16 has two arms, a short arm (p) and a long arm (q). Agnes has a third 16q, which is attached to her chromosome 15. It doesn’t appear that any material from 15 is missing. A full trisomy 16 would result in miscarriage or death shortly after birth, so that’s lucky for Agnes that she only has half of the third 16. There is still a lot of extra genetic material which is why she will probably die young. The body can’t function well with all that extra information; there will be problems, we just don’t know what they will be. I hope the doctors that are caring for Agnes do keep track of her and maybe write about her case for publication. Her life could be a helpful example for someone else who may be born with a similar condition.

There is such a wide range of possible outcomes. We can only hope and pray that Agnes’ outcome will prove the literature wrong and that she will be one of the cases where the kid lives longer or responds especially well to therapy.


Every Breath You Take

Big news today: Agnes is finally off the ventilator!

The doctors had promised Agnes would get off the ventilator at least once and maybe twice before, and it didn’t pan out for one reason or another, so when the doctor told me the plan was to extubate today and get Agnes off the vent, I was a little skeptical. I’ll believe it when I see it, lady. So I showed up for morning rounds this morning, and Agnes’ nurse was giving her a dose of steroids in preparation for the extubation. Then we waited around…some more…I dozed in my chair…we waited…and the doctors came in for rounds finally! The plan was to have respiratory care folks perform the extubation while the docs were rounding in the room, just in case. So there they were. And suddenly they were gone again! What the heck? Where did they go and leave all their computers behind? I guess there was a minor medical emergency in the next room that demanded their immediate attention. Anyway, they did come back, and the respiratory care ladies showed up, and it was on! They pinned down Agnes the Wiggle Worm and peeled the tape off her face and took out the tube! Then they quickly put on the nose prongs for Vapotherm, a beefed up version of the Plain Jane prongs that just deliver oxygen. Vapotherm delivers oxygen and a mild amount of positive pressure to assist in keeping the airways open. Agnes got a bit of extra oxygen to help her through the transition, but she was down to room air levels of O2 within an hour after the switch. She is getting some positive pressure, and so far her numbers look really good. She is breathing fine with a normal respiration rate, her oxygen saturation is steady in the mid- to high-90’s, and she seems quite comfortable.

She is being more feisty now that she’s stronger and not on narcotics. I sat with her for a long time this morning, and a bit this afternoon and evening, and every time I was there, she kept trying to slide out of her bed through those little armhole doors in the side of the isolette. She would get mad and flail around, and her body would somehow scoot toward the door, and maybe her leg would even flop out. The nurse kept repositioning her, but Agnes was determined.

Agnes also is opening her eyes a lot more today. And now that all that tape is off her face, I can finally see what she really looks like! I saw her as a newborn, but her eyes were mostly closed, plus she’s gained some weight so she looks different. She’s really cute! Her eyes are really dark blue and big, and she has a cute little nose, and I can finally see her cute little mouth. When she starts to sniffle a bit on the way to crying, her forehead wrinkles and she looks really cute. When she cries, she still doesn’t make much noise because her vocal chords are sore from the breathing tube. She makes a dramatic crying face and flings her arms around. All the nurses say it’s a good sign that she cries rather than just laying there not caring what people do to her. She is starting to be appropriately irritated when people mess with her.

We’ve been asking some questions to get an idea of what has to happen before Agnes can come home, and here are some answers:

The physical therapist will come evaluate Agnes and hopefully start working on her contracted joints and poor tone. The occupational therapist will most likely prepare some splints to train Agnes’ contracted finger joints in a more open, relaxed position. The speech therapist will come at some point later to evaluate Agnes for feeding readiness and issues relating to sucking.

The milk feedings through a tube will continue to increase at a continuous hourly rate. At some point, Agnes will be phased to a feeding schedule rather than a continuous drip. Agnes has to be completely off all breathing assistance before they will attempt feeding by mouth rather than through a tube.

It is still possible Agnes will need surgery to correct her recessive jaw. It was mentioned as a possibility right after she was born, but not so much recently. She has tongue tie which they don’t want to repair because of her recessive jaw. The tongue tie is the only thing preventing Agnes from suffocating on her own tongue. If they won’t cut the tie, Agnes may not be able to suck efficiently enough to feed by mouth. In order to cut the tie, they may have to correct her jaw. I’m not sure when all this will be decided.

I think the only issues we know about right now that need to be resolved are the breathing and the feeding. Hopefully nothing else pops up. Things are starting to look a little more positive around here!

Blessed Mary, Mother of God, pray for us! Saint Agnes, pray for us! Saint Maria Goretti, pray for us!


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