Laughing, Weeping, Living

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

The “T-Word”

It’s been a long couple of days around here. Yesterday morning Agnes spit up a high volume for the third time in a fairly short time frame, so we decided to call the pediatrician. For some reason, the office was closed so the phone line forwarded to a 24/7 nurse help line. I told the nurse what had happened, and she recommended taking Agnes to the emergency room, in light of the increased spits and knowing her history of malrotated bowel. Grr. So we took Agnes to the ER at Akron Children’s Hospital. While we were there, they discovered that her oxygen levels were low and that she was having episodes of desaturation. So they ordered a bunch of tests. X-rays, blood cultures, surgery consults, yadda yadda. Of course everyone was freaked out by Agnes’ squeaking breathing, and they decided they had to keep her in the hospital because of her breathing and the oxygen desats. Grr.

So Agnes was admitted for monitoring respiration and oxygen levels, with a slew of tests to try to find out why she is having these episodes. No one seems terribly concerned about the spit ups, apart from the fact that she may have aspirated formula or spit up into her lungs and that is causing the increased trouble.

Today she had a laryngoscopy which detected a narrowing of the space between the vocal folds which the ENT doc is pretty sure is causing the noisy breathing and possibly even the low oxygen levels. Unfortunately there is nothing to do about that problem because any surgical intervention would probably cause more problems then solve, plus the issue may be neurologic, where her brain isn’t telling her vocal folds to open the right way.

Also she had a follow up echocardiogram to determine if her low oxygen problems are because of deoxygenated blood in her heart bypassing the lungs and going straight to the chamber which pumps back to the body. The test concluded that this is probably not the case, which I guess is good. She won’t need heart surgery.

However, that only leaves the upper respiratory obstruction and at this time there is really only one surefire solution for that issue:

Tracheostomy.

This is where they put in an alternate airway below the obstruction. They cut a whole through the outside of the throat and create an opening into the trachea. I don’t know the whole story about what all is entailed in caring for this and maintaining the health of a child with a tracheostomy, but apparently it’s a big deal.

They aren’t saying Agnes should get one today. They do plan to keep her in the hospital over another night or two and run a couple more tests related to upper airway and swallowing reflex and things.

However, I am not clueless and I can tell the tracheostomy is in Agnes’ near future, unless she totally turns around and starts wowing everyone with her super-efficient breathing.

As a side note, I amused myself this afternoon in the hospital room by counting up all the doctors and nurse practitioners who have cared for Agnes. Including my OBs, the perinatologists, labor and delivery docs, geneticists, neonatologists, heart, brain, and endocrine specialists, surgeons, ER docs, nurse practitioners in every unit, and doctors on the floor where Agnes is now: over 50 people. That doesn’t even include the dozens of nurses, the therapists, or the techs who run the ultrasounds and other tests. Gosh, girl. Agnes is single-handedly keeping the medical profession in work.

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7 Quick Takes: June 14

Linking up with Jen and all the other party people at Conversion Diary for the weekly quick takes. Go over there if you like to partay.

1. After spending the night in the hospital because my doctors take not the tiniest chance with the health of my unborn child, I am happy to be home for the weekend. Agnes was monitored constantly overnight, and she turned in a “reactive” performance on the heart rate. That was a good thing, too, because the follow-up BPP I did this morning only scored a 6 because Agnes refused to practice breathing during the 30 minute ultrasound. She still netted a score of 8 out of 10 with the reactive NST plus the BPP, so I was discharged with stern instructions to call immediately if anything worrisome happens over the weekend. As you can imagine, I was not a happy camper laying in that awful hospital bed with a sweaty, bedsheet-wrinkled backside, imagining myself beginning an induced labor on Monday morning after an entire weekend of laying in that awful hospital bed–paradoxically not being able to sleep–with a progressively more wrinkled and sweaty backside to keep me company. So I am very relieved to be home.

2. My hand is really sore where they inserted the XL size I.V. amidst great dramatics on my part. I asked, “do I really need to get the I.V.?” and the nurse said, “it’s in case you need an emergency c-section, but I guess you don’t have to have it in now.” And I said, “I’m confident Agnes will do great and nothing will happen, so I don’t think I’ll take the I.V.” And the nurse said she would let the attending resident physician know. Then the attending resident physician came into my room and told me all the patients get one and it’s not optional. Fine. Sheesh. And now my hand is really sore, right in the same place they will insert another XL size I.V. on Monday. Fun for me.

3. I made a lasagna for dinner tonight, which is what I had been planning to make last night. I really liked how it turned out; I followed the recipe on the side of the noodle box except I added a secret special ingredient: cauliflower! I had half a head in the fridge that I really wanted to use up, so I sliced off the florets only and cut them into teeny-tiny pieces. Then I mixed the cauliflower into the ricotta/egg/parmesan mixture thinking it would masquerade as cottage cheese curds. It worked out really well, though some of the vegetable pieces were a bit crunchy and tasted like cauliflower. I didn’t fool my mom, but she admitted that it “wasn’t too bad” which I choose to accept as positive feedback. If I do this again, I’ll cut the cauliflower even tinier so all the pieces soften and lose the crunch.

4. Two more days infant-free! Agnes will be born on Monday. I have a scheduled  appointment to start the labor induction at 8 a.m. How’s that for a start to the week? Actually I’m glad it’s an early start time. Hopefully I won’t be laboring into the night, and since drugs are assisting and this is my second childbirth, it could go fairly quickly. I think the doctors want a quick labor just so Agnes doesn’t have to cope with contractions over a long time frame. I would be cool with that, too!

5. Stephen is singing in his room. I put him down for the night about 30 minutes ago and he was quiet for a while, but he is clearly not asleep. It really sounds like singing. Or whimpering to a tune. Or something. Whatever, he’ll fall asleep eventually.

6. I bought off-brand oreo-type cookies at the grocery store on Tuesday because I was a pregnant lady craving oreos. I ate a few of them. Now the package is nearly empty! How did this happen? And I’m being serious here; I really did only eat a few of them–6 or 8 cookies, tops. What a world we live in, where a pregnant lady’s pregnancy-craving cookies just disappear…

7. I talked to one of my OB’s about Cytotec, and I guess I’ll trust the docs on this. She said they’ve been using it for years with no problems, and it works. Also that there are no methods that don’t have side effects. She told be about the alternatives to Cytotec, none of which sound as effective or easy or non-invasive. I have to trust the doctors to have my best interests and my baby’s best interests in mind. Maybe my cervix will have done enough effacing by then that Cytotec won’t be necessary, but if it is, I will use it.

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Live! From the Perinatal Ward

Yep. I’m back in the slammer. That is, the doc at Maternal Fetal Medicine sent me to Akron General Hospital for another overnight session of fetal monitoring.

Here’s how it happened:

I went to MFM for my ultrasound and NST appointment, and things were looking fine. Agnes is up to 4 lbs 12 oz which is AWESOME! If she can make it to Monday, she should be nearly 5 lbs for her birth day. The cord dopplers were a little elevated; the S/D ratios were just the tiniest bit above 4. Her ventricles were measuring fairly consistent with previous measurements. My amniotic fluid was a tiny bit less than it was on Monday. She even breathed during the BPP so the ultrasound tech didn’t have to sit around waiting for her to breathe. But, she didn’t move very much during the ultrasound, so she was docked a couple points on her score for not moving.

See, what I just learned today is the BPP/NST is scored out of 10 points, 2 points each for breathing, movement, fluid, tone, and a reactive NST. Well, Agnes has been scoring 8 out of 10 which is technically normal, but today because she was napping during the ultrasound or something, she scored 6 out of 10 which is cause for concern.  The doc sent me to the hospital for overnight monitoring, and there will be a retest for the BPP in the morning. If Agnes does okay overnight, and scores 8 on the BPP in the morning, we can go home for the weekend.

If Agnes does poorly overnight and scores less than 8 on the BPP in the morning, I may have to stay at the hospital over the weekend and deliver as scheduled on Monday. Or, depending on how poorly Agnes appears to be doing, she may be delivered before Monday.

I’ve spoken with a few doctors since being admitted, and everyone has a different story to tell. The OB from my practice tells me to stay positive and not worry too much about the worst case scenario. She says the specialists think a lot about the possible worst case outcomes so that they are prepared and can then provide the best case outcomes. On the other hand, the neonatologist tells me there will be a crowd of specialists in the next room when I deliver, and the moment Agnes is born they will swoop in and whisk her away to the NICU immediately where they will install an I.V. and keep her “as long as possible.” He also tells me she may have an intestinal blockage or maybe her esophagus doesn’t connect to her stomach, and that accounts for all the extra fluid. And that would require an operation. Thanks, doc, for that news which totally and completely new to me and really very serious. Why is this the first time I am hearing this, and how dare you patronize me by asking “did you expect her to receive routine newborn care?”

At least he did try to backpeddle a little and tell me their goal is to do the smallest program of care that is possible for Agnes’s case. That is only mildly reassuring after the rest of what he told me, but I guess I’ll take it.

So, yeah, I’m trying to stay positive despite what the doctors insist on telling me.

At this point, I’m just really frustrated and angry to be in the hospital so soon before I’m scheduled to return for the real deal. I almost wish Agnes could just be born now. I used to be the most adamant against c-section, but now I kind of want the whole ordeal to be over. Just knock me out and take my baby already. It’s the waiting that is the most stressful.

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No Changes to Report

I had one of my twice-weekly testing appointments today. It was one of my shorter visits to the Maternal Fetal Medicine clinic, lasting only about 75 minutes. The BPP ultrasound was a breeze this time since Agnes decided to cooperate and practice breathing right away. The tech only needs to watch about 30 seconds of breathing to count it as a “pass” for breathing, and usually Agnes holds out on us. Not today. My amniotic fluid is still really high, which I’m worried about, but no one else seems terribly concerned. The doppler results also looked about the same as they have been, so there are no real developments. The NST went pretty well, I guess. I was kind of sleepy so I stopped paying attention and read a Baby Talk magazine while Agnes’s heart thumped away. After a while the nurse came and unhooked me, so I guess the results were fine. Whatevs.

One week from today I will be giving birth. That is totally blowing my mind right now. I don’t really feel prepared since I haven’t practiced my deep breathing or pushing positions or anything. I did read the chapter on labor and delivery in the What to Expect book, and that helped a little. I’ve already been to the labor and delivery wing of the hospital so I feel pretty good about that. The rooms are nice LDR suites (labor, delivery, and recovery) with a bassinet so baby can room in. I wonder if that will be possible for me and Agnes? There is a NICU at Akron General which should be sufficient for Agnes if she needs intensive care. I think they only send serious case babies to Akron Children’s hospital and Agnes might not qualify as serious enough for that (I hope).

I’m trying to think about this as levelly as possible. We met with Fr. Sal about Agnes’s baptism, and we’re talking about where to put the bassinet in our bedroom, and thinking about installing the infant car seat. We’re trying not to think like she will be stuck in the hospital for a long time, or that something might be seriously wrong with her. I’m trying not to think about the horrible side effects of the drugs they will give me to induce labor. I’m trying not to think about the fairly high chances I might end up in the middle of an emergency caesarean.

Happy thoughts. Happy thoughts. Yay, new baby. Yay, new baby.

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Small Changes in Agnes’ Condition

Agnes had a check-up today consisting of an NST, a BPP ultrasound, and a growth ultrasound.

The NST was non-reactive yet again. Her heart rate barely accelerated at all even when the nurse zapped her with the buzzer. Agnes also hardly moved during the test, which is a bit unusual. She usually moves so much they have a hard time catching her heart beat on the monitor. But the results were not alarming enough to merit an early delivery. The doctor said a non-reactive NST is not unusual for babies with ventriculomegaly.

The BPP ultrasound was an easy pass for Agnes as usual. She demonstrated movement, breathing, good heart rate, etc. The S/D ratio in the umbilical cord was not a high reading today, so that’s good. However, the test did show an increase in amniotic fluid since the last time, which is kind of strange. I remember being told in Albuquerque that the fluid amount hardly ever increases as the pregnancy continues. The doctor here said the increase in fluid is worrisome since it may indicate Agnes is having trouble swallowing. Just like they are watching her heart rate behaviors, they will watch the fluid because the brain controls all those functions and now it’s starting to look like there are problems with the connection between brain and other areas.

The growth ultrasound revealed an increase of fluid in Agnes’ kidneys. It’s called renal hydro-something-or-other and it had appeared on a previous ultrasound, but today it was more pronounced.

The growth ultrasound also showed that Agnes’ weight is up to approximately 3 lbs 14 oz. This is an increase since the last time, but not by very much. She only gained 11 ounces in two weeks. Her size is still under the 10th percentile, but the doc didn’t say what her percentile is. She still has growth restriction (no surprise). The doctor concurs with my OB that there is most likely a genetic issue going on since there are noticeable problems across multiple systems. She asked me kind of wistfully, “you probably still don’t want to do an amniocentesis?” No, I really don’t. Maybe if they had tried hard to sell me on the benefits of an amnio several weeks ago I would have gone for it, but at this point Agnes could arrive next week so what’s the point of doing the amnio now? They can test her genes when she’s born probably easier and with a less risky method. Even if she does miraculously make it to the magic 37 weeks and I do the amnio now, it will give us a two week edge at most. Is that worth it? I don’t know.

All these results are less than encouraging for me and I really have to stretch to see the bright side:

a) at least they didn’t send me to labor and delivery today.

b) at least Agnes did grow since the last growth ultrasound two weeks ago.

c) at least her NST was borderline ooching to worrisome, rather than a total and utter failure.

d) at least she’s still alive in there.

 

Saint Agnes, pray for us.

Saint Maria Goretti, pray for us.

Mary Mother of God, pray for us.

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