Laughing, Weeping, Living

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

Agnes’ New Record

Agnes came home from the hospital at 1:00pm Wednesday December 11. She was readmitted to the hospital at 6:30am Sunday December 15.

At around 2:00am Sunday morning, the night nurse knocked on my bedroom door saying that Agnes’ pulse-oximeter readings were low and she could not get them to come up, after trying for half an hour. So I went down and Agnes’ O2 sat was hanging in the mid-80’s. I tried a number of things with the nurse: repositioning, suction, more blankets, a different head pillow, flush the suction catheter and try suctioning again, rescue dose of Ativan, soothing touch, turn up the O2, make sure the machines are working by testing the pulse-ox probe on ourselves. At about 3:30am, I decided we should try changing Agnes’ trach tube, to eliminate that as a possibility. I woke up Jeremy to tell him what was going on and he came down too. We changed Agnes’ trach quickly, but she gagged and threw up a small amount. We suctioned out her mouth quickly but the damage was done. After that Agnes’ O2 sats were hanging in the 70’s. I tried snuggling while Jeremy called in to Palliative Care. The on-call nurse suggested giving puffs of Albuterol, which we did, and that didn’t help. Agnes looked peaceful–if the pulse-oximeter wasn’t there to tell us we wouldn’t have known there was a problem. the on-call palliative care nurse recommended we talk to pulmonology, which we did. That doctor recommended we go to the Emergency Department, which we did.

Upon arrival, Agnes continued to maintain sats in the 70’s. When the ER folks swarmed in and took her out of her car seat, she threw up again, a larger amount. At this point it was difficult to keep her in O2 above 75 percent even with aggressive bagging. We were lucky that the ER doc had treated Agnes before and knew about her likely problems. She called up to PICU to let them know Agnes was on campus, and they began preparing a room. Agnes endured a mere 40 to 60 minutes in the ER, getting an I.V. places, blood drawn for labs, and a quick X-Ray. It was very different compared to her previous visit.

We were taken up to the PICU soon after arriving, and the team worked aggressively to get her sedated, paralyzed, breathing on the hospital ventilator in 100 percent O2, totally supported. The X-Ray showed total white out on her left lung, and partial white out on her right lung. Doctors diagnosed chemical aspiration from when Agnes threw up bile upon arriving in ER. This was compounding the initial suspected pulmonary hypertensive crisis that started the whole ordeal at 2am. Because Agnes aspirated bile, she suffered septic shock. Her body shut down: low body temperature, low blood pressure, stopped peeing, no bowel sounds. On top of all this, her abdomen continued to swell with fluid. The PICU team is currently treating Agnes with meds to help her maintain normal blood pressure, improve heart function, dilate capillaries in her lungs to improve oxygenation. They are keeping her covered with a warm air cushion to help her maintain a normal body temperature. They are checking her blood work multiple times a day. She has a foley catheter. They inserted a drain to take off some of the fluid build up in her abdomen; that had drained off more than 500 ml by the time I left this evening. Agnes is still totally paralyzed and sedated, and completely dependent on all her treatments.

I have never seen her this sick. I am shocked at how quickly it came on. I feel responsible for her condition because it was my idea to change her trach at home, which caused her to gag and puke and aspirate a bit of bile. I am slightly reassured by the fact that the on-call docs we talked to would have made us change her trach anyway, but still, I feel in a way Agnes’ condition is my fault somehow. In my head I know we did everything they would have done had Agnes been in the hospital at the start of her ordeal, but emotionally I feel responsible. Perhaps this feeling will pass.

And finally, as icing on the cake, the neurosurgeon is serious about externalizing Agnes’ shunt this time. Because of the drain to take off some of the fluid in her abdomen. It could allow an infection to enter and taint her shunt. So the shunt must be externalized, CSF cultures sent, and reinternalized later. As a VA shunt to Agnes’ heart.

Shit.

So, long story short, Agnes is not yet stable. When she is stable, neurosurgery plans to fiddle with her shunt. The PICU team is also hoping to discuss a number of other procedures that Agnes may require. In other words, we’re probably looking at another three to four week hospitalization. Agnes won’t be home for Christmas.

But on the positive side, I guess Santa Claus flies in to Akron Children’s Hospital on Christmas Eve morning, on the Air Bear medical transport helicopter. That sounds exciting! Then he visits all the units. I know I’m not the only parent with a kid in the hospital over Christmas, but I sure feel disappointed.

I guess we need fervent prayers for Agnes’ recovery. There is so far she needs to come back this time. Agnes needs a miracle.

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

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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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4 Days Old…

Agnes has lots going on. I’m only doing a quick post tonight because it’s late; I will post a more complete story soon. She was suddenly transferred to Akron Children’s Hospital NICU yesterday evening where she was pretty much immediately wheeled into surgery to correct a mal-rotated bowel. What happens is, as a baby develops in the womb, the intestines form outside the baby’s body, then a miracle of Life: they fold themselves into the baby’s body in a very particular way. Some baby’s get willy-nilly intestines which causes kinks, which leads to obstructions, which can cause death. So they operated. She is recovering very well, all doped up on morphine and antibiotics. She will be in the NICU for the foreseeable future. Like I said, there is a lot going on with her that will come to be illuminated only with time.

We were able to have Fr. Sal baptize Agnes seconds before she went to surgery  last night.

Jeremy and I are holding together as best we can. We are visiting as much as possible, and my parents are really bearing the burden of Stephen’s care right now. Agnes’s godparents are coming to see her tomorrow.

The doctors expect Agnes to maintain her current condition all weekend while she recovers from the surgery. The next major step with her care plan will happen Monday when they attempt to remove the ventilator tube that is currently supporting all her respiration.

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

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Agnes Makes Her Debut!

The labor and delivery part of this journey is over. Everyone’s favorite deets first: 4lbs 8oz, 18in long, born at 9:04pm on 6/17/13.

I arrived at the hospital yesterday morning at 8 a.m. where they gave me a teeny-tiny dose of Cytotec around 9:45 a.m. The Cytotec works to soften and dilate the cervix, making it more receptive to the onset of labor. The doctor told me it takes about 4 hours for the full effects of the drug to manifest and start to fade, so we would have to wait at least that long until the next step. I felt discouraged knowing the labor wouldn’t really get going until mid afternoon, but there was nothing to do about it.

When she came back to check my progress, the Cytotec had helped to dilate me to 3 cm, and I was having super frequent contractions. Not really painful ones, just back-to-back-to-back, and some of them were uncomfortable. The doc said they couldn’t begin Pitocin until the contractions calmed down, and I felt discouraged again, becoming convinced that I would be laboring well into the night. I was already exhausted and sick of the whole ordeal, so this news was very upsetting. The doctor did reassure me by saying my progress was extremely normal, in fact better than normal and she was very pleased with the way things were going.

I continued to have contractions through the afternoon and into the evening. Several attempts were made to artificially rupture my membranes to help labor truly get underway, but because there was so much amniotic fluid, Agnes kept floating away from engagement and the doctor was nervous to break my water when Agnes’s head wasn’t in place as a cork to prevent the umbilical cord from slipping through the cervix with the gush of water. At this point, she told me she had spoken to my regular OB, and he wanted to come take a look and do the next steps since we were potentially in a scary area. He would be arriving in about an hour.

So Jeremy left to get some dinner since there wouldn’t be time later, and about 10 minutes after he left, my OB showed up. Go figure. “What are we doing right now?” I asked. “I’m just going to check your progress,” my OB said. Next thing I knew he was fishing around for my cervix and asking the nurses if the pads on my bed were sufficiently absorbent for breaking my water. The nurse handed him the amnio hook, and he broke my water! The son of a gun.

Let me tell you, it was every bit as dramatic as I had anticipated, and more. Gush, gush, gush, gush. I just kept saying “Oh my God, Oh my God.” It was wild.

But baby’s cord didn’t prolapse, and after the doctors left, my contractions did settle into a more labor-like pattern. More spaced, more intense. Though I did still have series of multiple contractions in a row with a longer pause between series. This was probably still thanks to that teeny-tiny dose of Cytotec I had been given at 9:45 a.m. I had never received Pitocin or any other assistance to start labor.

It was around this point that I started to rethink my “no medication” plan. The contractions were starting to get pretty painful, and breathing alone wasn’t quite cutting it. Around 8:30pm I buzzed the nurse to ask about medicine and she wanted the doctor to check my progress first, since it’s not safe to do I.V. pain meds too close to delivery. The doc came in to check: 5cm. Grr. But still she said it wouldn’t be long since my cervix was super stretchy. I had a couple excruciating contractions while we discussed the possibility that I might accept an epidural. Then it happened. Pressure. “I feel pressure!” So the doc checked me again while nurses swarmed in to the room.

I was ready. That didn’t take long. They wheeled me at a brisk pace down to an Operating Room for delivery so the special care team could be in the next room. I kept asking “when can I push?” They told me my OB was on the way, but I think everyone knew he wouldn’t make it. When I was finally allowed to push, I screamed and accepted the assistance of nurses. During the first contraction I was allowed to push, I pushed a couple two or three times. On the second push, part of Agnes’s head was born and the doctor said, “Stop pushing Judy, stop pushing!” I guess what happened was Agnes wasn’t turned totally with her nose to my back and the doctor was trying to turn her. I needed to push again and they let me. On the second contraction, one push delivered the rest of Agnes at 9:04pm. She was little! And wrinkly and blueish. And she had hair!

They took her next door to the special care team where they suctioned out her airways and did a number of other immediately required procedures, at which point, my OB arrived! Better late than never. He did get to do the really fun part: stitching up the several tears I acquired during delivery. I did receive pain medication at this point. Why is it that it is bearable to deliver a baby, but when the doctors start poking around with fingers it suddenly becomes unbearable?

It took a while for me to be repaired, and Agnes was taking a really long time. I didn’t get to see her at all before they moved me to my overnight postpartem room. When I was up and around getting ready to go to the NICU, I made the mistake of passing out in the bathroom, which meant I had to wait even longer in bed before the docs were satisfied I could safely visit the NICU nursery. I didn’t get to see Agnes until 3:30am, and even then I couldn’t hold her because her respiration was too high to remove her from her incubator.

I was finally able to hold her on my chest around 8:30am this morning and it was wonderful! She suckled a tiny bit at the breast, but she wasn’t really into it. I’ll try again when I go see her in a little while.

She is off oxygen and her heart rate is good. It appears her esophagus connects to her stomach since a nasal feeding tube was easily and correctly installed. She has an I.V. for fluid, sugars, and antibiotics (for precaution). She has low muscle tone, which combined with a number of other clues such as the high amniotic fluid and the way her ears look, has the NICU pediatrician thinking there is a chromosomal issue. He has ordered a karyotype test of all the chromosomes to find out if his theory is correct. She did test negative for Downs, Trisomy 13 and 18, but there are loads of other issues she has not been tested for.

It looks like she will be in the NICU for at least a week, maybe more. I will most likely be discharged before she is ready.

We’re still praying for a favorable outcome.

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

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What I Wore Sunday: June 16 Baby Eve!

Linking up with Fine Linen and Purple as usual on a Sunday! Head over there to read the other linkers-up. Link-uppers. Linkers. Whatever.

100_1680Let’s talk about my clothes first, this week. This is the big billowy dress my mom bought for my birthday a couple weeks ago. It is really lightweight and comfortable. Today is also my last chance to wear a dress for awhile since I intend to nurse Agnes when she makes her debut tomorrow. My mom bought the dress from a catalogue, maybe Woman Within or Romans or something. I’m not really sure.

I’m also wearing my brand new authentic Spanish mantilla! My in-laws just returned from a whirlwind trip to Spain and Portugal, and they were kind enough to bring me a mantilla in black lace. I have the little white lace one that I made, and I wear woven scarves a lot too. I’m really excited to wear a real mantilla from Spain! The lace is super soft and drapes nicely around my face. I did pin it to my head with bobby pins to prevent slippage. I really like that it covers my shoulders and arms as well. The shape is not what I expected–it’s a long narrow rectangle rather than a square or semi-circle–but it is a really convenient shape for wearing on the head. Because it doesn’t hang down a lot in back, it slides off less easily than a wider piece of fabric would. It still slides a lot if I don’t pin it, but the shape does help in that department.

And I’m wearing my black Minnetonka Moccasins. I promise, I do own other pairs of shoes. But why mess with perfection?

Stephen was excited to stay outside for a few minutes when we got home from church. He adores blowing bubbles. He is wearing a thrift store shirt, thrift store pants, and his new sneakers with lights on the sides that flash when he walks. They’re size 9 toddler shoes. Holy moly.

 

Today Jeremy, Stephen and I were officially welcomed as new parishioners at Holy Ghost! Fr. Sal made an announcement at the end of the liturgy, and gave us our welcome present: a box of donation envelopes! It was cute. Then we all went downstairs for cake. No, the cake wasn’t for us; it was to celebrate Fathers’ Day, but everyone was allowed to enjoy it, even the mothers and the babies.

2013-05-21 19.56.46Today is also my last day without an infant. Tomorrow at 8 a.m. we go to the hospital for my induction. I’m really nervous about it, and I’m afraid that every decision I will want to make about my labor will be taken away from me for medical reasons I don’t know about, or because something comes up that makes what I want an impossible course of action. I’m nervous because the labor will be induced and my body will be forced to comply with the doctors’ wishes that labor begin at a specific time and progress at a certain rate, and nothing will be allowed to unfold naturally. I’m nervous because the neonatologist told me a team of specialists will descend as soon as Agnes pops out. I think he thought he was being reassuring, telling me a lot of doctors will be around to make sure Agnes thrives. But I’m not reassured. All I want to do is snuggle Agnes on my chest and let her try to nurse. I don’t want her to be whisked away to the NICU and stuck with an I.V. and tubes. I’m hoping and praying she defies all the expectations and arrives screaming and flailing her limbs and otherwise being a completely normal newborn. I’m also hoping and praying I can keep my head in the game and do what is necessary. I’m just scared that I will mentally “give up,” especially if the doctors take away all my choices and decision-making opportunities.

I’ll probably see y’all in a few days, after the excitement dies down. Unless labor goes really fast and Agnes debuts by lunchtime tomorrow! Then I might be able to post tomorrow, especially if the locust swarm specialists take her away for testing.

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

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7 Quick Takes: June 7

Linking up with Jen at Conversion Diary for the weekly Friday quick takes. And guess what, folks? Today is actually Friday! Go me!

1. Big news on the pregnancy front: the induction of Agnes’s birth has been scheduled for Monday June 17. Of course, this is contingent on the test results next week continue to be merely moderately concerning rather than like “Oh dear God, get this lady to Labor and Delivery immediately!” Even though I knew the 17th was the date I reached 37 weeks, and the perinatologist told me we would deliver at 37 weeks, Monday June 17 just seems so soon! Even Tuesday June 18 sounds more leisurely for some reason. Well, I guess I’m just happy to know something for sure.

2. In related news, I had to sign a consent form for the hospital as part of the process to schedule the induction, and on that sheet my OB wrote in the medical reasons why I’m being induced, my bishop score, and the method used for induction. When I scanned the page before signing, I noticed he intends to use Cytotec to start the induction. This drug is used to soften and efface the cervix prior to inducing labor with a different drug. Cytotec’s intended use is for treating gastric ulcers. The FDA has not approved its use in inducing labor, though the American Academy of Obstetricians and Gynecologists has said it is fine on several occasions. Pardon my french, but that shit scares the shit out of me. I know any drug that interferes or alters the natural way of things comes with serious side effects, and the extreme side effects that can occur with Cytotec are not terribly common, nor are they much different from those that occur with similar drugs. The difference here is that Cytotec has a few well-publicized law suits, plus that pesky lack of FDA approval for use in labor induction. All I can pray for is for labor to miraculously begin on it’s own, or for my cervix to do all its own work by the 17th because I do not want that drug even in my hospital room.

3. And I was stupid for signing that consent form, but at the time I thought maybe I recognized the name of the drug but I wasn’t sure it was the same stuff I had heard about. It is. On the other hand, the alternative drug Cervidil is FDA approved for labor induction. However, it has a contraindication for when a prolonged time frame of contractions would be harmful to the baby, which is definitely the case for me. So… And it takes 12 hours to administer the dose whereas the Cytotec takes maybe 90 minutes. So… it’s a tough call.

4. But on a positive note I baked chocolate chip cookies today. They are delicious, “thin and crispy chocolate chip cookies” from The New Best Recipe cookbook.

5. Stephen has this funny new trick where he absolutely adores throwing away “trash.” Banana peels, used napkins and tissues, his own dirty diapers, any random piece of paper he finds around the house. We have to watch him or else he might throw away something that we actually need to keep, but so far that hasn’t happened. So far it’s still a charming, odd thing that he does. It’s really cute at the Maternal Fetal Medicine clinic where I get my ultrasounds. They drape a huge paper sheet over me to protect my clothes, then I use that to wipe off the goo when they are finished with the scan. Stephen is super excited to throw away that paper sheet. “Trash,” he says. “Trash. Trash.”

6. Oh, also Cytotec’s non-brand name is misoprostol. Misoprostol is half of the process for a chemical abortion, being taken 12 to 72 hours after a dose of mifepristone. So that will be nice to think about while I’m lying there in Labor and Delivery.

7. Sorry half my takes are about a scary drug. For my last take, I would like to thank the Blessed Virgin Mary for our miracle with Agnes. I also need to thank the saints we have been praying to particularly: Maria Goretti, Agnes, Joseph, and Walburga. Plus we are so grateful for all our family and friends who have been praying, as well as the nuns at the Abbey of Saint Walburga, and numerous priests who have offered masses for Agnes. We are not out of the woods yet, so continued prayer is still appreciated!

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7 Quick Takes: May 24

Lookee, I remembered to do the Friday Quick Takes link-up actually on Friday this week! Go me. Head over to conversion diary for the rest of the link-up fun.

1. I am struggling a little with coming to terms with the fact that I could have a baby literally at any moment. Seriously, she could arrive next week. I have an NST scheduled for Monday morning, with another one on Thursday afternoon. If at any time, baby’s heart rate fails to elevate the appropriate amount in response to her movements, the doctors will almost certainly induce delivery. It’s a little scary to think about. This weekend Jeremy and I are going to try to get some things in place just in case. Set up the baby swing and a changing station, and acquire a few preemie size outfits for a tiny newborn. Stephen was born into 3-month size clothes, so we have nothing small enough for a midget preemie baby girl.

2. On a related note, Agnes is baby girls’ official name. We have been telling people in person, but it was never revealed officially on the blog here until my husband’s guest post earlier this week. She will be named Agnes Maria, in honor of Saint Agnes and Saint Maria Goretti, both of whom were young martyrs. Agnes is often pictured holding a lamb, and the name means “lamb.” It’s been kind of cool so far, when I tell the medical folks she’s named for Saint Agnes, I actually meet a lot of other Catholics. I’ve chatted with at least three nurses who are Catholic. It makes me feel a little better about my sticky situation.

3. Also on a related note, I have been feeling physically less well the past couple days, and the only difference in my condition that I can tell is my new knowledge about what’s going on with Agnes. It’s all in my mind, and it’s annoying. There is too much to do; I can’t just be moping around feeling heavy and out of sorts. I know I do need to take it easy, but my body’s limitations are really starting to bug me.

4. These are the cookies I intended to bake today:

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5. These are the cookies I bought at Costco today:

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Maybe I’ll bake cookies this weekend. Ha. Ha ha.

6. This morning I went to Divine Liturgy at Holy Ghost Ukrainian Catholic Church. I was feeling the deep desire to attend something liturgical and sacramental, especially since this weekend might be my last chance to beef up on graces before Agnes arrives suddenly. I was a little nervous to go since I’ve only been to Divine Liturgy one other time (last Sunday) and I know a daily service is not the place to hang out if your requirement for participation is to follow the people in the pew ahead of you. At a daily liturgy, there aren’t any people in the pew ahead of you. Luckily, there was one guy who looked like he knew what to do, so I followed him. Fr. Sal was pleased to see me there, since the last time he saw me was in a hospital bed. He said he’s been praying for me and Agnes which is really nice. I think Jeremy and I are definitely going to attend that church as our parish. I really like the Divine Liturgy and the icons and the singing. And the people I’ve talked to at the church are very welcoming and friendly.

7. We found some supposedly “ready-to-eat” beets at Costco today. Since Stephen loved beets the other night when I served them, we bought the Costco beets for baby food. We served some to Stephen for dinner. He ate a bite, gagged and choked on it a little because it was hard or something, then refused the rest of his place. Including the chocolate pancakes that were on the plate. Now I’m afraid he won’t eat another beet for the rest of his life. Thanks, Costco, for your hard “ready-to-eat” beets that probably killed my toddler’s appetite for beets.

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Update on the Baby Girl

This is the fourth installment of my account of the ongoing medical issues surrounding my current pregnancy. To read the previous installments, follow the links.

Part One: Ven-TRIC-u-lo-MEG-a-ly.

Part Two: Oh Baby.

Part Three: Ventriculomegaly Update.

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Today I had my first visit with a perinatologist in Akron, OH. It had been three weeks since my last in-depth visit to the docs in Albuquerque, and four weeks since the last time I had an ultrasound to get the growth measurements for baby girl and the progression of her ventriculomegaly.  So I was a little anxious. What if we got in there and her brain ventricles had ballooned in the intervening weeks? Or what if her growth had stalled?

The visit started out a bit rocky when the genetic counselor we met with first thing said to me, “So, do you have any concerns?” And I was like, “Uh, other than the vetriculomegaly?” And the woman seemed to be under the impression that the ventriculomegaly was a concern with a previous pregnancy and she didn’t have any of the records my Albuquerque docs had faxed to Ohio. But she left the room to track down my file and we did get to go in for the ultrasound so things were looking up.

The awesome news is that in the four weeks since the last growth ultrasound, the swelling of baby girl’s ventricles has not increased at all! The measurement was almost exactly the same as last time. Plus the doctors here are saying it’s a “mild case” of ventriculomegaly, where the docs in Albuquerque led us to believe it was bad but not quite severe. The other awesome news is that baby girl now weighs in at approximately 3 lbs 3 oz. Her abdomen still measures very small, so she still technically has intrauterine growth restriction, but that is old news for us at this point.

More awesome news: the doctor said there is nothing about the baby to indicate that I won’t be able to have a natural delivery (after they induce, of course), and more importantly, nothing to indicate that it will be impossible to breast feed. In fact, they want the baby to nurse super badly. Like, it sounds like they will do everything in their power to support breast feeding for baby girl when she is born. So that’s all a huge, huge relief to me. I was really scared about the likelihood of needing a c-section, and I was sad about the possibility that I would miss the opportunity to nurse because she would need immediate care. The doc said baby’s condition does not appear to indicate that immediate surgery and complicated care will be necessary. We may even be able to take her home at the usual time, notwithstanding any underlying genetic anomalies that will not be apparent until after birth.

There is quite a strenuous program set out for me for the coming weeks. The doctors want me to go in twice a week to sit for what’s called a “Non-Stress Test,” which is basically where they strap a doppler monitor to my belly and listen to the baby’s heart beat for a 30 minute stretch of time. They want to make sure her heart rate stays steady when she’s just floating around, and they want to hear the baby’s heart rate increase slightly when she moves around. That’ s normal. Then if anything along the way indicates the baby is in distress, they will consider delivering her.

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I also have scheduled a fetal MRI to get good, clear pictures of baby’s brain. This will determine for sure whether all the structures of her brain are present and accounted for. It will also make clear the nature of the blockage or obstruction that is contributing to the extra fluid in her ventricles.

I also have scheduled a fetal echo, which will provide detailed pictures of baby’s heart. The doc said any time there are issues across multiply systems, they check the heart carefully to make sure everything is a-okay in the cardiac area.

The perinatology clinic is also going to schedule a big team meeting for Jeremy and myself, together with the perinatologist, my regular OB, the pediatric neurosurgeon, the neonatologist, the heart guy, the other brain guy, the genetic counselor, and whoever else might possibly be involved in my care and the care of baby girl when she’s born. It should be quite a party.

So, to sum up, it’s very encouraging that the ventriculomegaly has not worsened in four weeks. It’s very encouraging that baby has grown significantly in four weeks. It’s very encouraging that her heart rate is strong and her movements are vigorous. It’s very encouraging that I will most likely be able to deliver her naturally, and begin to nurse right away. There is a lot of care still required, and lots of questions that still need answers, but there is much to be hopeful for!

Saint Maria Goretti, pray for us and for our baby girl!

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Ventriculomegaly Update

img013Click for Part One.

Click for Part Two.

We had two doctor’s appointments this week since we are out of here next week. We visited the perinatologist yesterday and had an ultrasound done for all the measurements, and today we met with my regular O.B. for a bit of not much at all. There are no major new discovers about my baby girl and her ventriculomegaly, which if you’re just tuning in, basically means there is fluid in her brain that is not draining properly, so it gets backed up in the ventricles of her brain thereby causing swelling where there shouldn’t be any.

Two things of note from this week’s appointments: First, the swelling has increased to about 13 mm. Just to recap, it’s not considered “severe” until the ventricles are swollen to at least 15 mm. Even though the swelling has increased, my baby’s overall head circumference measures normal size, which makes the doctor think maybe the ventriculomegaly is the result of fluid filling in where a missing brain structure should be. He said if it were just a blockage, he might expect the head to measure large. However, he also said the swelling isn’t that pronounced so he still can’t say what the heck is going on. Maybe possibly a genetic disorder that won’t be identifiable until the baby is born.

Second, my baby now weighs about 2 pounds 2 ounces! That is awesome because she gained almost a full pound in three weeks whereas during the last three week interval, she barely gained half a pound. So she’s maintaining a growth curve, just at the small end of the spectrum. On the flip side, though, her abdomen is still measuring small compared to the rest of her body. The doc can’t say what the heck is going on.

Can anyone say “mystery baby” because that is exactly what is happening here.

Jeremy and I have been praying to Saint Maria Goretti to intercede for our baby, and we even made a little pilgrimage a couple weeks ago to Chimayo, NM where we scooped up some Holy Dirt and I applied it to my tummy. Also yesterday, I drank some water from the miraculous spring in Lourdes, mixed with a couple drops of St. Walburga oil. If you’re playing along with Catholic bingo, those are all elements that have historically been associated with miraculous healings. In light of all that, I would like to call MIRACLE for baby’s growth, since she weighs over 2 pounds and that would have been impossible if she had kept at her previous rate of growth. She really stepped it up. She has also been extremely active. I can feel her on and off for the entire day, and sometimes she moves around so vigorously I can see my tummy jumping. Her heartbeat is very strong; except whenever anyone tries to listen to it, she crawls away and they have to chase her around the womb with the doppler wand.

I really do feel hopeful about the outcome for our precious daughter. So many people are praying for us and for her, and the ultrasound scans continue to reveal a baffling mix of good and bad that just doesn’t seem like it should be possible. If she’s missing a brain structure, how can she be so active and strong on the heartbeat monitor? If she has swelling in her brain, why doesn’t her head measure larger? If her nutrition is poor (small abdomen) why does the cord, placenta, kidney function, fluid in the womb, everything, look normal? If she’s supposed to have growth restriction, how can she be maintaining a curve? This condition is commonly caused by chromosomal abnormality or in utero infection, neither of which are the case here. What is going on?

Seriously, I call MIRACLE. Just you wait and see.

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Oh Baby

For part one of my baby’s story, click here.

Today we had another follow up ultrasound and visit with the doctor about our sweet little girl. It looks like the ventriculomegaly is progressing very slowly since the last time, but still progressing. Three weeks ago the ventricle measured about 11 mm and today it measured about 12.4 mm or something near there. The doc said a normal measurement for a baby of her gestational age would be about 8 or 9 mm, and the condition isn’t classified as “severe” until the ventricles are swollen to at least 15 mm.

Also in new news, her tummy appears to be measuring small compared to everything else, but no one could tell me what that signifies. The doc said the placenta and umbilical cord look fine so the issue is internal with the baby.

For the good news of the visit, though my girl is pretty small, she is tracking a growth curve! She is growing at a normal rate, just starting out small. This is a change from my hulking gigantor first born who debuted at 8 lb 15 oz. My baby currently weighs in at 1 lb 5 oz, which does seem small for just over 26 weeks, but at least she is growing.

Also in good news, the blood test scan for infections came back negative! That is a huge relief since it seemed like that would be the worst possible outcome based on what the doc said at our last visit. So that just leaves some other genetic issue that they can’t test for, just because there are so many possibilities and they can’t test for everything.

We even got some really good pictures of her, even though she wasn’t being very cooperative.

26W2D_3

 

She pretty much constantly had her hands up in front of her face. “Go away and leave me alone. Stop prodding me with that wand.”

And they did a cool 4-D image:

26W2D_5

 

There she is! Isn’t she precious? It looks like she has hair, but the technician said there’s not as much hair as it looks; it’s more of a blurring at the edge of the frame. She is moving around a lot in utero and I am gaining weight slowly. I wish some of it would go to her! Jeremy and I were joking about what foods I should eat to help my little girl bulk up. We decided it would probably be raw broccoli and pickles, two of my absolutely least favorite foods. Unfortunately, the nurse practitioner I spoke with said there’s really nothing I can do to help my baby gain weight. Oh well, I guess I won’t have to choke down all that broccoli after all.

 

Saint Maria Goretti, pray for us.

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