This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

July 29, 2007 -- Adam's Post

Friday, April 30, 2010

Sunday:

Today's update is brought to you by Adam and the letter "W". Adam speaks:

Today was another good day for Michael. When Mom and Dad arrived Michael was in a swing and having the time of his life. It must have been that change of perspective or something. Being the weekend everything was kept at the status quo.

Mommy got to hold and rock Adam once he was finished with swing. Michael loves being held by Mom. Michael snuggled right into the crook of Mommy's arm. However, Michael thought that Mommy was not quite warm enough, so he decided to share some "liquid warmth" with Mommy. That's right, a big wet spot right through the diaper, the outfit, the blanket, right to mom. Michael thought that he was doing so well that he smiled right at Mommy as he was doing his best to "keep her warm". Once Michael had "warmed" mommy he promptly fell asleep. Since Michael was comfortable and Mommy wasn't, we decided to call it a day.

More great things to come throughout the week. "W" stands for "Weeeeeeee".

Adam

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July 28, 2007

Thursday, April 29, 2010

Today has been fun. Daddy gave Michael a bath today with the nurse. It was a bit of a new experience for both of them. Mommy videotaped it (bath day at the hospital doesn't often come on a Saturday, so Dad needed his turn when it came!) Michael wasn't thrilled with the experience. In fact, he seemed a bit frightened. Poor kid has not spent a lot of time upright -- at least not awake. He wasn't sure what to do with it. Surely he'll come to love it in time. If not, I guess that makes him all boy!

There have been no more puking episodes since last night. He got an extra hour before the next feeding time after last night's fun. The Nurse Practicioner also modified his feeding so that the food is pushed into his stomach over a whole hour instead of the previous half hour, but he is still eating the same 55 ml. They will re-evaluate on Monday, but hopefully the poor kid just needed a bit of a break after such a busy week.

Monday should be a busy day. He gets a hearing test and, depending on the radiology schedule, a video swallow test. Hopefully we will learn lots from both. It is clear to all of us that see Michael every day that he can hear. He is soothed by singing and other music and will look at people when he realizes they are talking to him. But, he is growing more immune to sound. There is so much going on around him all the time, including people talking around his bed all the time, that he just tunes everyone out. We wonder how they will test a kid immune to sound? I guess we will have to see!

Adam and I are truly thankful for all the offers of help everyone has made. We've finally collected ourselves and came up with a list of things we could use some help with. Adam and I had a pretty big "honey do" list for the summer. Between my bed rest before Micahel , and all the time in the hospital, it really isn't getting done. If you are inclined to help with anything you see, please give us a shout. [Author's note -- I deleted most of the list but kept some that are relevant to the unfolding story]

1. During the month of August, starting on the 6th, Adam and I will be without a kitchen. We will have a microwave and some refrigeration capability and that is it. We can use meals that can be microwaved. The tough part is that Megan (and Michael ) cannot eat cheese, cream soups, sour cream, or anything that has more than a cup of milk in it. We do have a non-dairy sour cream that we can offer from our fridge that will make a good substitute in a casserole, though.

...

6. Got any referrals to good nanny agencies? We need 'em! Michael is not allowed in daycare for the time being.

Again, thanks so much to all of you! You are the best!!!!!

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July 27, 2007

Wednesday, April 28, 2010

Friday

Big day ... started great ...

Michael tried eating from a bottle today. He managed to get 10 ml into himself, and he seemed to enjoy the experience. Monday is a "video swallow" test to see how he is swallowing and where the food is going. It will also test the effectiveness of different bottles and nipples to see what will work best from a swallowing/non-aspiration perspective. Michael will also have his hearing test on Monday. Another big day.

Tonight ended on a down note, though, with Michael spitting up a decent portion of his late night feeding. It is only the second time he puked, but he managed to do it three times during the feeding. Unfortunately, this will need to be reviewed by the doctors and nurse practicioners and may require an adjustment to his feeding progress schedule. Hopefully everyone will treat this as an isolated event and not a major episode, but it is possible that this will cause a setback in getting Michael home if they decide to roll back the feeds. They take feeding very seriously in the NICU.

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July 26, 2007

Tuesday, April 27, 2010

A Brief History ...

There is not much news to report today. Michael got some time in a swing he borrowed from the boys across the way and had a great time, but it was otherwise an uneventful day. (Hard to have action when you've already accomplished everything, I guess!) Mom suctioned the trach tube for the first time ... but that about sums it up.

So, in response to several questions we've received, I thought I would back up a bit and tell you all what happened from the time Michael was born until we opened up this website. Basically, how did we get to that big ugly word "surgery"? Feel free to stop reading now.

Michael was born on June 19th at 2:27 in the afternoon. Due to complications from a surgery I had as a teenager, I delivered him by scheduled C-section, under general anesthesia. By the time I woke up, he was in the NICU already. He scored very well on his APGAR tests, failing only in one aspect -- he was struggling to breathe. In fact, they had to keep pinching him to keep him breathing. As fate would have it (or the OR requirements) a NICU respiratory specialist was on-hand waiting for the delivery, and it was only a few short minutes before the neonatologists were on their way up to take Michael to the NICU.

Michael had such a significant retraction when he breathed (retraction = the amount his chest pulls inward when he draws a breath) that nurses and doctors frequently referred to it as a pectus (pectus = malformation of the chest wall that makes it curve constantly inward). Basically, each breath was a huge effort for the little guy. (Post surgery there is no pectus or retraction.)

We also knew Michael was born with a rather significant cleft palate. (Just the palate, not the lip.) At the time, we thought the palate, and transition, were probably the cause of the difficulties. Little did we know. As it turns out, Michael has a condition known as Pierre Robin Series. It is a name given to a series of symptoms when they occur together -- specifically, a cleft palate, a small or retrograde chin, and a tongue that rolls backward into the airway, blocking the airway and causing breathing problems. The average person has a 1 in 30,000 chance of getting this series. There are genetic causes, and pure coincidence. Michael's version is genetic, but it is not the typical genetic cause. There is a version of this Series that comes with severe additional complications that we are told Michael does not and probably will not have. Basically, it boils down to a lazy tongue he can't really control that covers his airway. For his entire life before surgery, Michael had to be on his stomach (except during careful periods of observation) so his tongue could not roll back as far. He also had a pacifier to help him keep his own tongue forward.

After a few weeks of observation, during which Michael did improve quite a bit, it became clear he was not going to be able to conquer the problem himself any time soon. Surgery became our only option, so they inserted the trach to give him a stable airway. The G tube in his stomach is to guarantee a stable source of nutrition regardless of Michael's ability to each by mouth (either because of the cleft or because of the trach). We hope it won't be all that necessary.

When will the trach come out? We don't know. It could be a few years, or it could be 7 months. He will have cleft palate surgery sometime between 6 and 9 months of age, and it may be that closing the cleft and 6 months of growth are enough to take out the tube. It may not be. We will have to see.

If anyone has any questions, please feel free to post them on the message board. We'll be happy to answer what we can.

And again, thank you all for your concern, and for your curiosity. It helps us (well, me at least) to talk about what Michael has been and is going through. I always worry that no one wants to know the "gory details" so when folks ask, it gives me an excuse to talk about it.

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July 25, 2007

Monday, April 26, 2010

Wednesday:

Well, Michael's IV in his leg came out this morning. He is now "tubeless" and is only encumbered by the monitoring wires and by his humidifier. So, he had his first bath in a little tub this morning, and the nurses said he loved it. (All prior baths were of the sponge-variety.) Mom wasn't yet there in time for the bath, but Mom and Dad get to give the next bath on Saturday morning.

The most fun thing about being less encumbered is that Mom and Dad can (depending on the nurse in charge) pick up Michael and put him down without nursing assistance. (Some nurses feel more cautious and aren't comfortable with this, but some are.) He is much easier to hold with only the blue tube and the wires measuring his heart and respiration. Michael seems much happier, too, to be able to be out and about more. He fusses less, and relaxes more.

What next, you might ask? Well, Michael needs to get up on full feeds, but that will be in a day or so more. He also needs to work a bit with the therapists on feeding by mouth to see what he is capable of doing with his cleft palate. This will involve some testing with video equipment and x-rays, and trial and error of different types of bottles. There is more than a little pessimism that he will be able to maintain his full feed level by mouth, but we aren't convinced that he can't. So far, Michael has proven he can do anything he puts his mind to, so why not this? He had some success early on, before the doctors disallowed oral feeding, and we see little reason why he won't tackle this challenge head on as well.

In addition, Michael has to have a few more x-rays and tests on his lungs and other organs. They want to confirm his lungs are still fine. And remember the major episode on the day of the first surgery? He'll still need to be tested to see if there was any visible damage from the oxygen compromise, but Adam and I aren't expecting any.

And then, the doctors have written the order that Mom and Dad are to be trained on the care of Michael and his special equipment. This training will take some time (not sure exactly how much). But, the incredible news is that training is in anticipation of discharge! Yes, discharge! The doctors actually said DISCHARGE! Granted, this is still a couple of weeks away, but we are working on a plan to bring this baby HOME! He has passed all medical obstacles required by his doctors in anticipation of leaving the NICU, and now we are working on what it will take to BRING HIM HOME! (I can't say it enough -- it frankly brings tears to my eyes.)

I'll bet you can't believe I waited until the end of the posting to actually say that. Just wanted to check if you were still reading.

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July 24, 2007

Sunday, April 25, 2010

Tuesday.

Our Miracle Baby keeps on trucking! They delayed his CPAP weaning, but it happened. Michael's CPAP was turned off this morning, and his blood gasses are better than ever. He has a humidifier placed over his trach, so the pictures won't look much different, but it sure is a big difference to Michael! The humidifier is like a loose cap on the trach (it really doesn't touch it at all). The ventilator/CPAP was a plug in to the trach which restricted Michael's head movement. Now, he can turn his head however he wants. The only drawback is the cap is pretty big -- not designed with a baby in mind. It gets pushed up against his mouth a bit (and he'll gnaw on it) and it interferes with the super-important pacifier sometimes. But hey, that is a small price to pay.

The sedative/pain killer is now gone too, as is Michael's arterial line. This leaves only the line in his leg, which could be coming out tomorrow, per Dr. K____. This will mean that Michael has no tubes left in him when the leg line comes out -- leaving only the humidifier and the monitoring lines.

And, on the Michael comfort-o-meter, they found a crib! He has a nice big comfy bed now. He can wear some clothes (button down all the way from collar to ankle), and he can have some of his very own blankets from home, too. Cribs mean a lot more flexibility and comfort. They are even looking for more crib hangings and toys for him. (The more distractions for him, the better for the nurses!)

Mom and Dad both had a nice long bit of "holding time". All around, it was a great, great day.

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Later July 23, 2007

Saturday, April 24, 2010

Monday night:

Well, Michael is going off his IV nutrition and will be stomach fed entirely as soon as the current bag is gone. Too bad this doesn't get rid of any tubes and wires just yet, as the same line is being used for multiple things, but it does mean one less machine hooked up to him.

The biggest news on the progress front is the great experiment Michael is trying tonight. At 2AM, they will turn his CPAP off. At 4AM, they will take another test of his blood gassess. If the blood gasses are good, the ventilator is gone! Now that is a HUGE tube to get rid of. (But where will they attach his mobile?)

The biggest news on the care and comfort front is that Daddy got to hold Michael for the first time in two weeks. The arterial line is still in place, but the doctors have written an order that we are allowed to hold him anyway, so long as he can tolerate it. (And, to be honest, it has to be fairly quiet and not crazy in the NICU because it is a delicate transfer with the arterial line.) Michae and Dad both had a great time. Michael was less fussy on all fronts. He didn't cry or pout after he settled in, he didn't squirm or kick, and he didn't get any raspy sounds from his trach. It was like he was waiting for this. What Michael did do, though, is decide to puke for the first time in his life, to Dad and Michael's great surprise! (I'm not sure who was more surprised at that.)

It has been a great day. Hopefully it will be a great night as well.

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July 23, 2007

Friday, April 23, 2010

I guess this posting is a tad later than usual. A lot is going on, but I won't keep you in suspense by waiting until tonight.

Saturday night, after we left, the doctors turned down Michael's pain medication again. It was set at "1" when we left yesterday, and it has been going down at a rate of 0.5 each time they turn it down. (The actual dosage is a bit complicated, based on volume per weight per hour, but like lots of hospital formulae, it boils down to a one number setting on the pump.)

Since Saturday, the CPAP settings have been turned down a few times, and by the time we left last night, it was at the lowest settings before removal. Michael's x-rays continue to be great, as are his blood gasses.
The doctors are very pleased. They even suggested that his arterial line might be coming out today. He will be transferred to a crib as soon as they can find one. The NICU is very full of crib kids right now, which is great for those kids that no longer need isolettes, but it means Michael may have to wait for his bigger bed.

Speaking of all those other kids, the hospital is saying that the NICU is very crowded right now, with lots of premies and sick kids. We are all so grateful for all of the prayers for Michael, but we can't help but think of all those other kids and parents. Some of the babies have been in the hospital for months and months, and some of the parents have to travel hours to see their kids. It sure would be great if you could include the kids and parents of our NICU in your prayers. And, for that matter, kids and parents in hospitals everywhere. It sure is hard to be separated from your baby, and not all parents have the incredible support network we have with all of you. Some of those poor kids only get to see their parents once a week because that is all the more often they can get there with the distance and their other obligations (kids, job, etc.) All the great messages from all of you help us remember how lucky we are, and help give us strength to offer support where we can. We sure would appreciate if all of them could benefit from your prayers too.

We will update more soon. Thanks again to all of you.

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July 21, 2007

Thursday, April 22, 2010

Saturday:

We have had an amazing day. As we said yesterday, Michael switched to CPAP, which is an air support system that pushes air into Michael's lungs, but Michael does all the breathing on his own. Well, this morning was the first time since surgery that Michael's lung showed up completely clear. In fact, his lungs appeared a little over-inflated. Assuming that the x-rays continue to be clear, and this wasn't a fluke, then this is a message that Michael needs to be kept clear of the ventilator and needs to do the work on his own to manage his lungs.

And, more importantly for Michael, he got a mobile above his warmer. I wish you all could have seen how entranced he was with the shapes and colors above him. It is a whole new dimension to his world, and he is so cute with his fascination. This will make the nurse's lives easier, as there is something other than them (and Mom and Dad) to keep him entertained.

We are hopeful that Michael will be moved to a crib soon, as he will have more entertainment options there. Getting rid of a few more tubes and wires is a prerequisite. Hopefully, his PCP line (line in his leg that delivers his IV nutrition and medication) will be removed before too long. And, if his x-rays remain good, and the need for blood gasses goes down, the arterial line will come out of his arm, which means that we will be able to HOLD HIM again soon. What a great day that will be!

We've had been warned numerous times that surgical recovery was likely to be an up and down road, with some setbacks. Ever since the second surgery, though, we have had all forward steps. It seems incredible, but the news gets better every day. Hopefully, all the bad stuff happened the night of the first surgery, and it will be an up road all the rest of the way. We will have to see.

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July 20, 2007

Wednesday, April 21, 2010

Friday:

Well, Michael had another day of progress. His IV feeds went down and his stomach feeds went up and his sedatives went down. And ... first his ventilator settings went down, then they were turned off, and he was switched to CPAP (continuous positive air pressure) after his blood gasses came back "crazy good" (to quote his nurse). What that means is that the machine no longer helps him breathe, just offers air pressure (but the ventilator is set to turn back on if Michael stops breathing altogether).

On a funnier note, it appears that the swelling in Michael's head is going down. The nurses say that his head is the same size but the pictures say otherwise. In any event, his face is sure less puffy. Now the only thing swelling his head is his nurses telling him how cute he is.

As for the lung issue ... no news. The pulmonology consult has not yet occurred. In the meantime, Adam and I choose to hope that the inflation issue in his lung will resolve itself as Michael moves more and the sedative continues to be reduced. The neonatologist has said this is a possible outcome, and we like the idea, so that is what we are pulling for. However, we have been warned that more intervention may be necessary.

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July 19, 2007

Tuesday, April 20, 2010

Thursday:

Short and sweet. Michael has made progress in many areas. He has finished his last feeding at 10 ml every three hours and the next one will be at 15. His sedative settings have been turned down again, and he is enjoying company at his bedside. All of this is good news.

On the "life is not perfect" side of things, Michael's x-rays are still coming back cloudy in his upper right lung. The anti-secretion medication is not helping like the doctors would like, and the pulmonologist is being called in again. This is not something alarming, we are told, but it is a bit annoying because Michael can't come off the ventilator until the issue is resolved. We'll keep you posted.

All in all, a good day, but Mom and Dad are tired. There is something about hospital air....

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July 18, 2007

Monday, April 19, 2010

Wednesday:

Today was a big day. The doctors have decreased Michael's sedative/pain medicine and switched his ventilator settings. Now Michael does all the work, and the ventilator only kicks in if he fails to take a breath for 8 seconds. The ventilator and the sedative are tied together in the weaning process, so when one goes down/away, the other will shortly follow.

Michael's oxygen saturation levels were great all day. He "desatted" to 88 once when he was uncomfortable and wanted to be repositioned, but that was it. (FYI, the numbers measure the percentage of oxygen saturation, and a "desat" is hospital speak for "desaturization of oxygen levels in the blood". I've gotten a lot of questions about that one -- sorry.) A "great day" is O2 levels consistently between 95 and 100.

Finally, Michael started food through his G tube today, at 5pm. The rate is 3 mls every 3 hours, but they are still targeting full feeds (60 mls every 3 hours) by the end of the week. (I'm not sure if that is Friday or Sunday -- I keep forgetting to ask.)

Mom had to "plug in" Michael's feeding tube today for dinner. It was a weird experience. It clicks in like the earphones on an IPOD or walkman, but it feels strange to me. It seems like it should hurt when we tug on it or push on it, but the nurses say it doesn't. Michael does get a funny look on his face, but that could be anything.

During the daytime, Michael wanted so much to be awake. He kept fighting sleep and jerking himself awake every time he started to drift off. He also opened his eyes every time Mommy or friend Tammi stopped talking to him or moved our hands away. He was determined not to miss anything! "I know you are going to leave and have a massive party as soon as I fall asleep!" But, by evening, when Daddy was there, he was much more mellow. He also had fewer oral secretions (aka drool) and in general seemed much more comfortable and more willing to snooze.

The funniest (and most heartwarming) Michael story was when the nurse was trying to console him after suctioning his tube and in general "bugging" him. He was getting fussy, kicking, and turning red with frustration. She said, "It's okay. Mommy didn't go anywhere." At which time I came closer and put my hand on his head and spoke to him. Immediately, he stopped kicking and crying and returned to his normal color. I guess he really was looking for me! (But, two minutes later he started up again, so I guess I didn't fix whatever it was he thought I was supposed to fix.)

Well -- that was Wednesday with Michael. It sure feels like we're finally going in the right direction.

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July 17, 2007

Sunday, April 18, 2010

Tuesday.

Happy Birthday Michael! Today, our baby boy is 4 weeks old, and he has had a big, big day.

First, the surgeon came around and changed his trach tube. He came through it wonderfully, the nurses said. The wounds are healing nicely, and there was no desat during the trach change (which was a possibility).
Second, the paralytic drug was stopped today. After moving around for a few hours, Michael opened his eyes around 4:30. His eyes were covered with a cloth, but as soon as we saw they were open, we removed it, and Mommy was the first thing Michael saw. Before too long, we had to leave for the nursing shift change, but we came back to find a sleeping baby. When he woke up and saw Daddy staring at him, he got all excited and squirmed around on his bed. At that point, it was a battle -- Michael's curiosity versus the sedative that was still being dripped into him continuously. It was pretty much an even fight until we left him for the night.

The doctor on rotation tells us that he expects the ventilator to be turned off very soon and Michael to be back up to normal feeds (through his G tube) by the end of the week. This is all great news, and much faster than we had dared to hope.

Michael had a "low sat" day for him -- his O2 levels were in the high 80s and low 90s for much of the afternoon. After some adjusting of his trach tube, his sats finally came back up. In the meantime, though, his blood gasses were "really good" (per the technicians) and the ventilator was turned down again. It is hard to tell how much Michael is even using the ventilator at this point, though, because he is breathing much faster than the ventilator settings. We can see sometimes that it is pushing him to deeper breaths and supporting his breathing attempts, but it seems to Mom and Dad that Michael is doing much of it on his own.

On the lighter side -- Michael has had two record setting diapers as a result of his diuretics. A "heavy" diaper is about 50 grams or so, and Michael had one of 195 grams and one of 196 grams. Believe it or not, the diaper did not explode. Pampers makes one tough newborn diaper! The nurse is suggesting we write to the company to see if it is fodder for the next great diaper commercial. "If Pampers can handle MY kid's diaper, it can handle YOUR kid's diaper...."

Ok, ok, enough silly diaper stories.

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July 16, 2007

Saturday, April 17, 2010

Another day, more good news. Michael had another great night and day. He had one very minor desat spell during his bath this morning -- he drifted to 85. 85?! We'll take it! This evening when we saw him, he was at 99 and 100 on his O2 levels the entire time we were there.

Things are looking good for turning down Michael's paralytic drugs tomorrow. We need to hear from the doctors after they confer tomorrow, but the signs are all in the right direction. The surgeon who operated on Michael saw him this afternoon, and his partner saw Michael this morning, and both say his incisions are healing well, and they seem to both think that he is ready to be weaned and allowed to wake up.

One of the bonuses for Michael being so critical is that he gets more continuity in his nursing care. He has had the same dayshift nurse for three days, and she is back tomorrow, and he has had the same night shift nurse for two days, and she will be back tomorrow. This makes getting updates easier on us because we can speak to the same folks each time. Thank goodness for small favors. Before surgery, Michael had a different nurse almost every day, and it was like starting over each day.

Onward and upward!

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Later, July 15, 2007

Friday, April 16, 2010

Sunday night.

We just got back from seeing Michael. He continues to have a good day. We did learn that they want to keep him sedated and medicated through Monday, and they will re-evaluate on Tuesday. He is doing well on his "vacation" so they want to prolong it to promote healing of the trach.

The doctors tried to reduce his paralytic medication back to its prior dose today. They had thought that perhaps there was an issue with the syringe that continuously drips the medication and that when the syringe was changed, Michael might not need the higher dose. However, as Michael showed Mom and Dad when we went in tonight, it was no fluke. Michael keeps trying to breathe on his own -- so the medication has been reset again to keep him still. It was strange to see his little stomach muscles move as he tried to breathe before the ventilator, but they increased his dose as soon as we all saw what was going on.

Michael is still laying on his back, but he is tilted a little to his left now (since yesterday). Everything is going as expected, but Michael does have some issues with inflation of his lungs -- more so on the right than the left. Medication to thin the lung secretions has been very successful, as has the repositioning. We understand from the doctors that this is normal for children who are not permitted to move, and his blood gasses are just where they want them to be. He has chest x-rays periodically, so they are keeping a close eye on everything.
All in all, Michael is resting and healing and is stable. He heard us singing tonight, and he responded again. We just have to keep waiting, hoping, and praying. We know you are all with us.

Megan and Adam

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July 15, 2007

Thursday, April 15, 2010

Sunday.

Yesterday Michael's paralytic medication was increased because he was metabolizing the drug too well and it was wearing off too quickly. I guess he really wants to be a part of the world still, which is comforting.
We are getting ready to go visit Michael tonight, but we've already talked to the nurse from the dayshift. Michael had a good day. There was one small desat spell, which was short, not very low, and completely reversed when Michael was suctioned. On the super-positive side, his ventilator settings were turned down again (yay!).

And, unexpectedly, Michael's digestive track has started working. (Graphic detail coming in the next few sentences -- fair warning.) He was not expected to have any bowel movements while on the paralytic drugs, but he has had several in the past day. As a result, the medical staff has turned off the tube in Michael's nose that leads to his stomach and suctions out the stomach contents (bile, etc.) We are taking this as a good sign that Michael will make a quick recovery as soon as they let him off the drugs.

We plan to be spending more time at the hospital tomorrow -- haunting the doctors until we know what the decision is about letting Michael's medicine wear off. We'll let you know what they decide.

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July 14, 2007

Wednesday, April 14, 2010

Below is the first installment from our original CarePage, edited for privacy.

Well, it's Saturday, and it is our first time to try to post something to this new website. Michael had his first surgery last Tuesday night, and his second surgery on Thursday afternoon. He has been sedated since Tuesday afternoon and on paralytic drugs since Tuesday evening. We are hopeful that he will begin to be weaned from the medication on Monday, but that decision won't be made until Monday. In the meantime, Michael is taking a little vacation while the machines do everything for him. He has round the clock devoted nursing care watching all his vital signs.

Interestingly enough, Michael is not completely unaware. He can hear people talking, and he can feel. Depending on how well he is doing, we can touch his head and legs, and talk to him, and they assure us he knows we are there. He is communicating to his nurses through his blood pressure, which elevates whenever someone talks near his bed, or when he is in any discomfort (at which time they rush to figure out what it is and make it right).

Now, for the details. If you don't want to know, stop reading now.

Michael's first surgery was to install a trach tube in his trachea and a G tube in his stomach.

Pre-op was difficult. He had a lot of lines and tubes inserted, and we could not be with him as much as we liked. As a last step, Michael had to be intubated, and because his airway was unstable, the doctors wanted to do it while he was awake and still in the NICU. Unfortunately, they were not able to get the tube in after several attempts, and they needed to take him to the OR without it, to try again. So, down to the OR Michael went, with us in tow. We don't know exactly how many tries it took to intubate him in the OR, but it took more than one, and it was an effort.

Everything seemed to go well for a few hours after surgery. The surgeon was pleased with everything, but late Tuesday night the trach tube failed, and Michael needed to be intubated again. Thank God for Doctor B____, or we would have lost him that night, but Doctor B_____ successfully intubated him on the very first attempt. Despite the great efforts of the medical team and Doctor B_____'s great talents, Michael's oxygen levels were compromised for 20 minutes, reaching as low as the 20's and 30's for several minutes. As a result, neurological testing and brain ultrasounds are in his future to see if permanent damage was done.

On Thursday, Michael had the trach tube replaced with a longer one that the surgeon believes will be more stable, and so far there have been no issues with the tube.

Despite the scare, Miracle Michael again has convinced us that he is fine, because he has shown evidence that he still recognizes our voices when we come to visit. Before the surgery, we used to sing to Michael to make his blood oxygen levels go up, and now when we sing the same songs, his blood pressure drops a bit, so we know he hears us and recognizes what we are doing.

Adjusting Michael's ventilator settings has proved a task of constant adjustment, but there have been no more spells as bad as the first night. He's had a blood transfusion from Aunt Kim's donated blood, and a diuretic to reduce water retention, and pain meds and post-op drugs, but otherwise he just lays quietly while the machines do all the work.

We are looking forward to the day when he is allowed to wake up, and we will keep you posted.

Megan and Adam

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Surgery

Monday, April 12, 2010

Let me take a step away from our timeline for a moment to tell you about one individual who made a remarkable difference to us during this stressful time. She was the nurse that was taking care of Michael on the day Dr. 'S' told me that Michael needed a trach. Let's call her Nurse 'B'.

Nurse 'B' was a young nurse, but not fresh out of nursing school. She was very calm, but friendly, and confident enough in her skills that she wasn't afraid to admit when she didn't know something, nor did she feel the need to put herself above me, as Michael's mom, in some sort of battle over who was in charge. So many medical professional feel the need to do this, but she did not. Even all this time later, she stands out for that choice

As Nurse 'B' said to me much later, the day she met us, she became invested. You don't watch a Mom fall apart, then pull herself back together, then gear herself up to make a life-altering decision for her family and not become involved. She got a backup to watch her cases that day, and she came in to the meeting with the pulmonologist with me. From that moment on, she was there for us. If she was working, she was working with us, and if she wasn't, she was keeping tabs on us. She was a great comfort to me, not because she was emotional and huggy, but because she was not rotating in and out on us. She was simply there, and she kept tabs on everything so that she was always current. She always knew what was going on so she could answer questions, find me answers if she didn't have them, and -- yes -- hold my hand if I needed it. She was imminently professional and at the same time altogether accessible. When she was on duty, my husband and I truly felt that we could let down our guard and the world just might not fall apart at the seams.

I will never forget her, and I will never forget her name. There are a lot of nurses I will never forget, some good, and some bad, but somehow the names of the bad ones have slipped away. Her name, and a small handful of others, have stayed with me. We are actually looking forward to finally going to a NICU reunion so that Michael and I can see her again.

Now, back to our story.

We consented to having a trach tube and a Gtube placed in Michael's trachea and his stomach in one surgery. The surgery was late one night, starting at nearly 8:00, if I recall correctly. My husband and I ... let's finally give him a name, shall we? He wants to be called Adam, so we'll go with that. Adam and I sat in the windowless NICU waiting room, waiting for our three week old son to return from a surgery that would change his life and ours. I have never felt such a state of helpless anxiety before in my life, although it was a feeling I would grow very accustomed to in the coming months.

Michael's trach surgery was on a Tuesday. Our original Carepage sponsored blog began the following Saturday with a little bit of a recap. I will stop my very lengthy introduction to this story here, and let the original blog take over. Hang on tight, though, because the next post has some shockers. Before I hand you off to my younger self, I need to explain a little bit about our Carepage and what we were trying to accomplish.

Basically, we started the web page because we were exhausted from calling five or six or more people every night when we got home from the hospital. We decided that for our own strength, we needed to just explain the day's events once, and whomever wanted to know could read it. We never intended to write a contemporaneous "blog" about our emotional experiences or our feelings. We were primarily focused on transmitting information to people who wanted it. I think this approach becomes readily apparent in the very first post, where I try to recap four days of extremely emotional events into 1000 words or less. (The original Carepage software had a 1000 word limit that was later eliminated.)

So, please don't make the mistake that some have made in thinking that Adam and I were suffering from Pollyanna syndrome, and putting a happy face on everything. We were communicating information as best we could, without trying to scare or upset anyone needlessly. We were not trying consciously to record our emotions. From time to time, though, you will see a completely emotional discharge, sometimes happy, and sometimes sad. At those moments, the emotions were so big that they were beyond our ability to reduce them to clinical words and facts. In truth, we were emotional all the time. We hugged, we laughed, and we cried nearly every day. For much of the time we felt lost and hopeless, and that is why we are choosing to republish our original private blog on this public website.

If we can help one other family feel less alone ... then reliving these days on this blog is worth it.

Thanks for reading.

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He Needs a What?

Sunday, April 11, 2010

Once I put my foot down and decided that I had had it with the "wait and see" approach, life for us began moving at a frantic pace.

One Sunday evening, the head of the NICU practice was the doctor on rotation, and he talked briefly with my husband and me about what our options were most likely going to be after the pulmonologist made his examination. With Pierre Robin, several treatment options were availble. First, there was the "wait and see" method that we were already trying. Second, there was something called a "tongue-lip adhesion" we could try, where a plastic surgeon would literally sew Michael's tongue to his lower lip to try to keep it out of his airway. Third, the doctor thought we might be able to attempt something called a "neonatal jaw distraction" where surgeons would insert devices that would stretch Michael's jaw and pull his tongue out of the way that way. One last option was a tracheostomy, where they would cut a hole in his neck and let him breathe through a tube for awhile. But, the doctor said, he didn't think the chances of the pulmonologist would recommend a tracheostomy because the doctors thought they "saw cord" on the day Michael was born, and tracheostomies were not the first option when the child was intubatable.

Okay.

I can deal with this. A little surgery, some recovery, and moving on. My husband was still pretty much in shock, but I was no stranger to hospitals and surgery. A surgical fix to put an end to this endless waiting ... I could handle that. Of course, no one wants to put a newborn through any kind of surgery, but if it got him home with us ... I could deal with it.

On Monday, the pulmonologist asked me for a meeting. Dr. 'S' came by and said that he wanted to sit down with me as soon as possible. Of course, it was daytime, and I was at the hospital without my husband. My inlaws were with me, but as far as parent decision-makers, I was standing alone in the bulls eye. After the weekend update from the NICU staff, I thought I was prepared. "Sure," I said to Dr. 'S'. "I'm okay with anything so long as he doesn't say he wants to put a trach in my kid."

"Mrs. K___, the doctor does want Michael to have a tracheostomy," he answered.

At that moment, I grabbed onto Michael's crib and hung on for dear life. I was standing in the middle of a very crowded NICU, with at least 15 babies, and their nurses, and some parents, all standing around with machines whirring and monitors beeping, and yet, the room went strangely silent to me. I felt somehow like a white cloud descended around me. My heart seemed to stop, and a cold feeling went through my body, starting at the back of my neck and enveloping me entirely. I thought if I so much as let go of Michael's crib, I might fall over. I wanted nothing more than to drop down on the floor, in the middle of that crowded NICU, and stop moving.

A tracheostomy. They wanted to cut a hole in my kid's neck and shove a tube in. He wouldn't be able to talk or cry to me anymore. This ... this was more than I could handle. I was mentally and physically overwhelmed by the concept. At that moment, if I had been given an honest option of giving the child back to the unborn world he came from and move on alone, I would probably have agreed. I was so devastated and shocked at the turn our life was taking, and I was desperately afraid that THIS was beyond my ability to handle. I thought we had found the line beyond which I could no longer cope.

The doctor said, "I wanted to come over and tell you myself so you could get used the idea and prepare yourself." I remember vaguely that he asked me if I was all right. I remember taking a few deep breaths, never letting go of that crib for one second, never looking at anything but the floor, and I remember saying, "I need a minute." He squeezed my arm again and told me the doctor wanted to see me right away, but I should take a few moments to get a hold of myself. I remember whispering to myself inside my head that I was this child's mother. If I didn't step up to help him, who would? For better or for worse, this was my job, and there was no turning around.

I could draw this story out for pages, talking about what happened when we talked to each of the doctors, what we said, what they said, and how we struggled with the information and what to do, and how we tried to put a plan together with the help of my family, the pulmonologist, and a pretty incredible cleft palate surgeon. I don't know that rehashing these details are really all that helpful, or even that interesting, but I am open to any questions anyone might have.

Instead, I will just limit my comments to a few things I wish I knew during that time. First, my child had a structural problem, not a respiratory system problem. A pulmonologist should never have made the final determination about whether my child needed a tracheostomy. We should have had an ENT consulting, because ENTs deal with structural problems.

Second, the pulmonologist also recommended that Michael receive a gastrostomy tube for his feedings because "children with cleft palates often have eating trouble." This statement is true. I also believe that there was a lot of merit to having the Gtube placed while Michael was already under for his tracheostomy. What I didn't know then and do know now is that a pulmonologist should never have made the determination that my son needed a GI surgery without consulting with a GI doctor.

Third, our pulmonologist dismissed all the other options as follows: The jaw surgery doesn't work, and tongue-lip adhesion would be a waste of time, and a tracheostomy was our only option. I asked for a second opinion, and the pulmonologist told me that "Michael was not safe enough for a second opinion." Lesson number three is that I should never have let that doctor talk me out of a second opinion. Another surgeon, at another hospital, could have done a file review Michael never had to be moved, and I allowed myself to be bullied. In truth, another children's hospital about 12 miles away would have offered me an entirely different plan of action that would not have involved a trach but would have involved the jaw surgery that the other doctor had described to me.

At the end of the day, we convinced ourselves that the trach was, sadly, the best option. We had a plastic surgeon whose judgment we trusted above all, and he had quite a bit of experience with Pierre Robin. In fact, he had just recently attempted a tongue-lip adhesion surgery on another little boy whose family we would soon meet. As it turned out, the surgery was not successful for that little boy, and he ended up needing a trach as well. The plastic surgeon had little hope that the surgery would work for Michael either, and he really did not want to try it only to have it fail. He also was not comfortable with the idea of doing a jaw distraction on a child as young as Michael, himself, but he was willing to try to find us a surgeon who would do one if we wanted. By then, though, we had become convinced that as devastating as a trach seemed to us, it was the best option for Michael.

At the end of the day, as you will see much, much later in the original blog, the decision not to seek a second opinion was not a wise one. Again, we made the best decision we could with the information we had available. In hindsight, this decision was probably not the best one for Michael's individual physiology, but we had no way of figuring that out. (But, again, just because you can't possibly know what is the right answer and what is the wrong answer doesn't mean that there isn't a right and wrong answer.)

If we find ourselves in that situation again, I would never stand for a doctor telling me that a second opinion was not possible. I don't know what choice my husband and I would have made had we gone to the other hospital and met with a surgeon who was willing to do the jaw distraction. Standing where we are now, it looks like we should have tried the jaw surgery, but of course we have no way of knowing what would have happened. That path, too, comes with a host of potential complications, and who knows which one of those complications we might have encountered?

I can say that if we have another child in the same situation, we will probably try jaw distraction before consenting to a trach, but hopefully we won't ever find ourselves there. I am not saying that the trach is a bad thing itself, or that the jaw distraction is a surgery everyone should rush into if they find themselves in our situation.

What I am saying is that we consented to put a trach in Michael to give him time for his jaw to grow so he could breathe without help. In a great deal of the cases, the jaw will eventually grow out, and we were all reasonably confident that Michael's would, too. In a year, though, my husband and I would be sitting down with some of the same doctors, and some different ones, facing the very real possibility that Michael's jaw, while growing, was possibly never going to grow fast enough to get that trach out. One year later, we were facing the same decision we faced in Michael's first few weeks.

Despite our best efforts to avoid unnecessary surgery, all we did was buy time. But again, had we had the jaw surgery in that first month, no one can say what we would have faced on that path. We chose a path that did not go where we thought it would, and it seems like it was the wrong choice, but quite possibly the other path would have led us right back to the trach eventually, too. We will never know.

What I do know is that we made one very right decision during the whole process. We met other doctors in that same pulmonology group, and we selected a different one to do the follow up work after Michael was finally discharged. We needed a doctor we could talk to, and who would listen to us, not one that gave orders and expected us to follow them. I don't doubt that the pulmonologist that arranged for Michael's trach surgery really cared for doing the best thing for my child and wanted to do the follow up himself. I do doubt that he and I ever would have seen eye to eye on treatment plans.

Lesson number four: if you can't communicate with your doctors, you need to make a change.

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I Have Had it With Waiting

Shortly after my pep talk with Dr. 'M', I was down in the NICU, grilling my son's nurses. Of course, they didn't have a lot of answers for me. Up until that time, every nurse had had different answers for us. One of them had said something about how she thought Michael's tongue was covering his airway, but she seemed a bit ... flaky ... and this answer seemed rather absurd to us, so we didn't really believe her.

Finally, I made enough of a pest of myself that someone called the social worker assigned to me. She came to see me, armed with lots of computer printouts and information and helped me connect with the NICU doctors that were difficult to identify among all the other people coming and going in the crowded room.

As it turns out, the flaky nurse was right. The doctors thought my son had something called Pierre Robin Sequence, meaning that his lower jaw was so small that his tongue was pushed up (causing the cleft palate) and had a tendency to roll back, blocking his airway. Thus, small chin = cleft palate + can't breathe. Pierre Robin Sequence as an isolated incident (meaning not caused by some underlying syndrome) is very rare -- something like one out of every 30,000 births, and is believed to be caused by uterine positioning. As time would later tell, we had an even more rare kind of Pierre Robin-- a genetic, non-syndromic kind, probably caused by the genetic micrognathia (small mandible) that ran in our family. In fact, small chins and clefts, or near-clefts, are scattered in my family tree. My son just took it that one step further and made a real problem of it. (Nice.)

But ... what did this all mean for Michael? When, and how, were we going to be able to take him home? The answer from the doctors was, "It's up to Michael." Basically, they were hoping he would get strong enough to be able to control his tongue and keep his airway mostly free without any further intervention. In certain positions, Michael was fine. He was working harder to breathe than they liked, as evidenced by the retractions in his pectus (the center of his chest) when he inhaled, but they had hope. Much had improved since Michael's birthday, though. He no longer became two-dimensional baby when he inhaled. He didn't require oxygen, and he was able to tolerate food given by tube down his nose without compromising his respiratory status.

I should point out that this NICU was very conservative, and babies in respiratory distress, especially those with cleft palates, are not permitted to try to eat by mouth. All food is given by IV nutrition at first, and then by NG tube, with the oral feeding coming only gradually. Emotionally, this fact was hard for us to accept, because we didn't think there was anything so "wrong" with Michael that he shouldn't be allowed to try to eat, but the hospital had its reason. One of the reasons was the risk of fatigue. Michael was already working hard enough, they didn't want him to burn too many extra calories trying to suck and swallow. Another reason was Michael's cleft palate. A cleft palate interferes with the ability of a baby to create an effective suck (making it harder to eat, already something they were worried about), and it increases the risk of aspiration. With a hole in the head where no hole should be, the doctors were concerned about the direction fluid would travel, and the last place they wanted it to end up was in Michael's lungs.

One of the other reasons the NICU had for playing the "wait and see" game was Michael's intubation status. They examined Michael's airway with that scope they use right before they intubate someone, and the NICU doctor on staff thought he could "visualize vocal cords". By that, they meant that they thought Michael was intubatable in an emergency, so they felt that they could give him time to try to work things out. (As it would turn out, this conclusion was about as wrong as wrong could be.)

I went home, and Michael stayed in the hospital. I attached myself to a breast pump around the clock, as one of the only things I could do to help my child. My in-laws had moved in for a little while so they could drive me to and from the hospital every day because I wasn't allowed to drive. My husband went back to work, deferring his paternity leave until Michael could come home with us.

After two weeks, though, not enough was changing. Michael quickly graduated to a "big boy bed" and was out of the incubator. He was maintaining his own body temperature almost right away, and once we managed to get the whole bilirubin/jaundice issue straightened out, there wasn't much need for the incubator anymore. Even better, Michael was able to get all of his nutrition by the tube in his nose, and the IV nutrition was removed. But ... he still needed the high flow nasal cannula. Without the pressure of the air through the cannula, Michael could not keep his tongue out of the way, and he couldn't keep his oxygen levels in a safe zone.

At first, and for a long time, I didn't understand that Michael could go home with the nasal cannula if he was safe. I didn't understand that he could go home with the NG tube in his nose, too. I was feeling sad and frustrated, and I thought we would be in that hospital forever. I wasn't allowed to stay with him, and twice a day I had to leave so the staff could perform rounds. I had to leave to eat, to drink, and to pump. I needed a nurse's permission to enter the NICU and visit with my baby, and I was not allowed to pick him up or hold him without someone supervising me, and depending on how I held him, he might obstruct his breathing.

In many ways, this situation was emotionally unendurable. I was now having regular "updates" from the doctors, which sometimes consisted of messages from them that they had nothing new to report. One day, the new doctor of the week rotated on shift, and he came to me when I asked to see him. He was very excited to report that Michael was on "full feeds" via his NG tube, was out of his incubator, and no longer required oxygen. Wasn't this great?

I was less than impressed. I said, "Sure, that is wonderful, but we are no closer to taking him home. Feeding has never been the issue. What are we going to do about his breathing and the tongue that you think is obstructing his airway? I know we are waiting, but honestly, what are we waiting for, and how long are we going to wait? What is the plan for bringing my son home?"

Well, I'm a bit chagrined to say that the doctor was shocked. He was familiar with Michael's condition, but on his very first day on Michael's rotation, Dr. 'S' was not prepared for anything other than the "wait and see" approach. Certainly no one had warned him that I might be starting a war dance.

To his credit, Dr. 'S' quickly got on board my train. He heard my concerns, my frustration, and my helplessness. He put his hand on my shoulder, and he said, "Ms. K____, I hear you. We need a plan, and I intend to get you one. I am going to call a pulmonologist to come look at your son, and we'll see what he says. If we don't get any answers from him, then I will move on to call an ENT. Either way, we will start to get some answers."

I have a love/hate relationship with that conversation, because very quickly our hospital life went from waiting, waiting, waiting, to frantic action. I often wondered what might have happened if I had kept my mouth shut and let us wait a little longer, but I did the right thing.

At the end of the journey, I can look back and say that at every moment I made the best decision I could with the information I had available. Sometimes, with hindsight, I can see that some of my decisions were right, and some were wrong. Either way, I did the best I could and I have no concerns in that regard. But, as Doctor House said on the TV show House (I'm sorry, but I don't know which episode, and I probably don't have the words exactly right): "Just because you can't know what the right answer is doesn't mean there isn't one."

So, while sometimes I wonder how things might have changed had I kept my cool and stayed quiet, I know speaking up was the right choice.

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Waiting, Waiting, and Now What?

Saturday, April 10, 2010

The days after Michael was born are still blurry.

I remember sitting in the recovery room after my C-Section, talking with my husband, demanding to know why Michael was in the NICU. I kept asking, over and over (in between excrutiatingly painful bouts of the nurse trying to massage my uterus back into shape), "What is wrong with him?" My husband kept answering, "He has a cleft palate." That's it? A cleft palate is no reason to be in the NICU. I knew that much. Then, later, my mother and husband both told me that Michael was having some trouble breathing, and he needed to figure out how to do it before he could leave.

I didn't meet Michael that day. The nurses caring for me were stalling in bringing me a wheelchair, I think in the hopes that I would rest more before making the trip. Probably, I could have insisted, but I really did believe that the baby would be brought to my room soon enough, and we would be able to move on from this mess. I was in a right and proper state of complete denial. The kid would figure it out, and I wasn't ready yet to confront what my logic already knew: "cleft palate" does not equal, "can't breathe."

I lay in my room that day and night, with my mother and husband visiting me. I kept sending them off to be with the baby, saying, "He needs you more than I do." When I was alone, though, I would drift to sleep and then wake up gasping for air, feeling for all the world like I couldn't breathe, and nearly panicking in my efforts to get more air into my lungs. The situation got so bad that I was afraid to fall asleep at all without someone in the room to help me. I had no monitors or anything, so if my oxygen levels did start to fall, no one would know. I would sit up, waiting for my family to return, flipping all 15 channels on the TV over and over, falling asleep between clicks because I was so exhausted. I remember doing this, but even writing it out sounds absurd. I fell asleep from the time it took me to change a TV channel.

Finally, the nurse and my mother intervened, and they called the anesthesiologist up to my room. As it turns out, the problem was my pain medicine. Basically, I would get my periodic medicine dose from the pump, I would fall asleep, and my oxygen levels would drop to about 92, at which point I would wake up flailing around for air. Typically, a person would not recognize an oxygen "drop" to 92, but apparently I did. The anesthesiologist said he found that people with a history of asthma (which I had) were often sensitive to this kind of O2 drop, and since I had a history of asthma, he figured that was why I was so bothered by it.

The next day, with my own breathing problems behind me, I finally got down to the NICU to see the baby (whom we had not yet named), and at some point, I actually made my husband tell me all that had happened while I was unconscious.

From his perspective, the day was pretty frightening. He came in, kissed me before the surgery, and went to sit in the hallway. A short while later, he heard the sound of our son screaming his fool head off in the OR. Some hospital employees were walking past and asked if that was his baby in there, and he said yes. They said the really loud crying was a really good sign, patted him on the shoulder, and walked on. He waited. A few moments later, a doctor he later understood was the NICU on-call doctor and a nurse came down the hall and went into a door next to my OR room. Shortly afterward, they came back out, with our baby in an oxygen tent and began wheeling him down the hall. Of course, my husband followed, and what he saw was terrifying. Our baby was working so hard that each time he took a breathe, his entire chest caved in until it was almost flat. Clearly, this child was in deep trouble.

Chronology at this point is really hard for me to communicate, because I'm not entirely sure I ever got it straight, what with being unconsious for large parts of it, and having the pain meds and post-op fuzziness to deal with. So, I'll just focus on the key things we learned from the doctors.

Except for the breathing part, Michael's APGAR scores were very high.

One of the reasons he cried so hard in the OR was because they kept pinching him to keep him crying. If he was crying, he was breathing. When he stopped crying, the trouble started.

The oxygen tent was not helping. Lack of oxygen wasn't exactly the issue. Michael didn't need more oxygen, he needed more AIR. He was struggling to get the air into his lungs in the first place. His situation improved greatly when they placed him prone (on his belly) in the incubater and had him on a high flow nasal cannula.

My memories of those next few days are ones of fatigue and nervous energy, all wrapped up inside my body at the same time. When I was in my room, I was edgy because I wasn't down with my baby, and I kept going to the NICU despite the fact that it took a lot out of me to make the trip, even in the wheelchair. Once in the NICU, though, I didn't find I wanted to stay all that long. There were very few places to sit, and I was weak and tired. Michael's condition was stable, for the most part, and he seemed to be generally improving, and I was willing to live with that until I got back to my room, and the process started all over again.

I could go on, and on, and on with the stress of those first few days. We were fortunate enough to be at a leading Women's and Children's hospital, with a Level 3 NICU. Mothers in extremely early, unstoppable labor were often airlifted to this hospital because of their experience with micro-premies and sick babies. While all this experience might have been comforting, we had a hard time getting the nurses and doctors to recognize and remember that Michael was not premature. They treated him like a premie and were frequently surprised again and again when he didn't respond like one. Of course, his small-ish size (just under 6 pounds) didn't readily clue anyone in that he was really a full term baby with a problem, not a borderline premature baby.

I'm not saying that Michael was in any danger from the hospital's treatment. No. There is no doubt that the hospital saved his life. What I am saying is that Michael was more restricted and kept from us far more than his condition warranted, and he was sometimes not treated with the right scale or standard. For example, the NICU declared him jaundice based on premie baby standards when, as a full term baby he was not jaundice. As a result, Michael spent several days "under the lights" when he didn't need to. I could go on about how we discovered these issues, and how we rectified them, but I won't. They really don't relate to Michael's story all that much, although they did add to our stress and did give us a harsh introduction about how much truly aware parents really need to advocate for their sick children. I merely want to let it be known that it happened, and that it can happen in even the best of hospitals. We (my husband and I) have since sat down with the head of the pediatrics division of the hospital and talked about all of our issues and concerns, and we have every confidence that the hospital is taking great strides in trying to keep these sorts of situations from occuring in the future.

Two days (I think) after Michael was born, Doctor "M" came on rotation. You will remember her from my first post as the doctor that scared the crap out of me before Michael was even born. On this day, though, she redeemed herself in my eyes for all time. She came in to my room to check on me, and she asked me how the baby was doing. I responded that he seemed to be doing okay, but I still didn't know what was wrong with him. No one was really talking to me all that much. We were still waiting on some sort of answer. She stared at me a moment, then sat down on my bed. Then, she looked me straight in the eye and said, "Mom, he is your baby. You are his mother. YOU are the one in charge of him, not them. Now get out of this bed, go down to that NICU, and you demand some answers."

Holy cow.

She was right.

What on earth was wrong with me? My child was in an incubator (although he didn't need to be, truthfully). He was being kept from me, and I had no idea what was wrong with him.

At that moment, lethargic, complacent mom went away, and mamma cougar came in her place.

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Happy Birthday

Michael was born mid-afternoon, in June, via scheduled C-section.

The C-section was a choice we reluctantly made because of some complications caused by a spinal surgery I had when I was a teenager. In short, the surgery made it impossible for me to have an epidural and put grave doubts on whether I would actually be able to successfully deliver a baby without intervention. After much discussion with the OB, we all agreed that the safest course would be to have a C-section because the odds were good that we would end up there anyway, and the doctors (quite properly) preferred to do it at a planned time rather than in an emergency.

Leading up to the operation that day, I was, as one nurse put it, "the most reluctant pregnant woman she had ever met." Most women are nervous, but happily anticipating the big event, the birth of their child. I wanted it all to be over with, but I guess, in my deepest being, where I never admitted it to anyone but my nightmares, I was still not sure everything was going to be all right. I am not a pessimist by nature, so this kind of despondency was well outside my comfort zone. I was, as I had been for months, plagued by a sense of uneasiness.

We tried to use a spinal so that I could be awake for the operation like a more typical C-section, but fate had other ideas. The anesthesiologists were anxious about the irregularities in my spinal column, and they, in turn, made me nervous, so we were (collectively) unable to get the spinal in place correctly. After a few attempts, my OB pulled the plug on the idea and said we had to proceed with the surgery using general anesthesia. Sadly, this was one of the events I had been afraid would happen. Because of the general anesthesia, my husband was not allowed to be in the OR with me, and I was left with a mask on my face, a catheter in my bladder, and a tremendous feeling of helplessness while my husband waited outside the room and my mother waited in the lobby. My last vision before unconsciousness was a doctor, standing over my head, with an intubation tube in his hand. As soon as I was out, he was going to shove that thing down my throat. The last thing I heard was the pain management specialist, who couldn't place my spinal, looking at me with sympathetic eyes, whispering, "I'm sorry," as he wiped a tear from my cheek.

In theory, I would wake up, with my husband and my brand new baby at my side.

The reality was quite different.

Because we had received so many "near misses" of things that could have gone so wrong, my husband and I had a plan. If the hospital had to take the baby to the NICU, my husband was to follow the baby. The idea was that my mother would come from the lobby to be with me so I wouldn't be alone when I woke up. In fact, though, I woke up before I even left the OR. The team kept asking me questions, and I thought I was really supposed to answer, but hey! I still had this tube shoved down my throat! I couldn't talk! So I pantomined that I couldn't talk, and was told, "If you want to talk, take the tube out."

Yes, I extubated myself, in the OR. I pulled out that tube with my own hand.

Of course, the questions apparently didn't require an answer, and I couldn't remember what they were anymore anyway, so I croaked, "Where is my husband?"

Some nurse answered, "We're taking you to him now."

Then I asked, "Where is my baby?"

The same nurse answered, "They took him to the NICU. I don't know why."

That's it. That's all she said. She offered no other information. She didn't try to find someone to come tell me. She just said that, and for all I can tell, she walked away. I don't know why. I don't know why. To this day, I wish I knew the name of that nurse, because I would like to let her know what kind of panic she caused in me and how those words, even now as I type them, still make me cry.

I was wheeled into the recovery room, and again I asked for my husband, and again I was told he wasn't there. I asked for someone to please go get my mother, but for some reason no one felt that they could do that. I think they thought it was my husband's job or something, or that he should just pick up his cell phone and call her. I don't know what happened, why she couldn't be there when I knew she was so close.

All I knew, in the fog of the anesthesia and the post-op pain, was that my fears had been real. I was alone, and even worse, my baby was in trouble in some other part of the hospital.

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More Troubles

Thursday, April 8, 2010

In my last post, I talked about the troubling uncertainty we had leading up to Michael's birth.  We had a lot of false alarms.  "Hmm, looks like something might be wrong."  (Time passes.)  "Well, I guess it was a false alarm."  Even toward the end, we had one or two more signs of potential Down's, but the doctors told us that the "markers" that showed up were not relevant anymore because we had had a complete count of Michael's chromosomes during the CVS test, and the results were normal.  The markers were simply indicators.  The chromosome count was definitive.

So, all signs were that Michael was going to be perfectly healthy, and yet it seemed we always were sitting down talking to doctors that had grave faces and the word, "But" on their lips.  I even asked my OB when we could "stop worrying."  Now, it was obvious to everyone in the room that I meant when could we stop worrying about all these uncomfortable early test results, but she deliberately misunderstood me.  She said, "As a parent, you never stop worrying.  My kids are over 18, and I still worry about them every day."

Gee, thanks.  I needed that.

Unfortunately, she didn't end the discussion there.  She went on to tell me that just that morning she had delivered a baby to a couple in our local hospital.  They had had all the standard pre-natal tests done and, unlike me, all the tests had come back normal.  So, they went into the delivery room, and the baby was born with Down's.  Then she went on to say this, "Sometimes, you do all you can, and the unexpected happens.  Bad things sometimes happen.  I told that mom that she was just as much a mom as anyone else, and it didn't matter that her baby had some problems."

Well, I'll give the doctor some credit.  She was absolutely right that bad things sometimes happen no matter what, and the baby was a baby and the mom was a mom, and nothing was going to change that.  But, really?  Is that the kind of story to share with a scared pregnant woman who thinks she might be walking into something so much bigger than she can handle?  I don't really think that was the time and place for the story, I really don't.  I was looking for reassurance, or at least a candid explanation of why everyone was continuing to look for problems despite the negative tests.  I needed a verbal hug, not a bolstering pep talk.  I left that office in tears, trying to figure out when, if ever, I might find peace again instead of this lingering anxiety and fear. 

I was bitter and angry at this doctor in our group (let's call her Doctor 'M') for a long time, as was my husband.  As time passed, I eventually saw a method to her seemingly cold and thoughtless words.  First, I think she was afraid I was considering abortion and she was trying to put an end to those thoughts by "reminding me" of my responsibility to the heart beating inside my belly.  Believe me, I never lost sight of that responsibility for one moment.  I think any conclusion on her part that I was considering abortion was a gross overreaction to my distress, and if she really thought that, she needed to have an open and candid conversation with me about her viewpoints rather than this obscurity.  When the early tests had come back, and it looked like one of the possible results would be that Michael had a fatal condition, another doctor (Dr. 'Z') in the group had discussed my options with me, "just in case I was thinking about it."  She had made it very clear, firmly, politely, and openly, that if I decided I did not want to continue a pregnancy that could only lead to heartbreak, they would help me find a doctor to assist me, but that no one in their practice would perform an abortion.  At the end of this conversation, I was neither hurt, angry, or dismayed by the candor, nor did I feel as if I had been accused of being or doing something I was not.

On the other hand, I also think that perhaps Dr. 'M' was still absorbing what had happened to that other family earlier that day, and she was sharing their grief and disappointment in her own way and hadn't yet put the unfortunate situation behind her.  In other words, maybe I just ran into her on the rotation at just the wrong time and she was not able to switch gears from dealing with a grief-stricken new mom to dealing with an anxious and fearful pregnant woman.

I don't know what the issue was, but I was wounded again in a time when everything seemed to be going very wrong.

Unfortunately, again, I had not yet seen the end to my pregnancy complications.  About six weeks before Michael was due, I was in the OB's office again for a routine checkup on a Thursday or Friday only to return home that day with orders for immediate bedrest until the following Monday.  My blood pressure was too high, suddenly, and I was not even allowed to go out to dinner that night.  Of course, the following Monday, nothing had changed, and I was ordered home and in bed for the rest of my pregnancy.

Great.  Just great.  Now, not only was I anxious and scared, but now I was anxious, scared, and left with only daytime TV and books as my companion.  I no longer even had the distraction of going to work every day.

No matter what happened, though, I had one thing to keep me hoping, other than the strong and persistant kicks in my abdomen from a child who was very much alive and active.  I had this:

1st pic

There he was, weak chin and all, looking an awful lot like my own father, even in utero.  Whenever I would look at this, I would feel a little calmer, a little stronger.  This could not be the face of disaster. 

Right?

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Before Our Story Begins ... Being Pregnant

Monday, April 5, 2010

Our original Carepages blog picked up when our son, let's call him Michael, was a little over three weeks old and had already been through two surgeries. So, before jumping right in to the original posts, I figured a little bit of background was necessary.

My pregnancy with Michael was more eventful than anyone would have liked. We started out with a bad nuchal translucency test result at about 11 or 12 weeks, which immediately put us in fear of our baby being born with Down's or a severe heart defect. We (Michael and I) undertook test after test to see if they could find out what was causing the high nuchal measurement, including a chorionic villus sampling test (which is what they do instead of amniocentisis when the pregnancy is too early along) and a fetal echo cardiogram. To this day, I think Michael and I had more sonograms than most people have for all of their children. Every subsequent test came back normal, but despite these subsequent "normal" results, from that moment on, we were treated as "high risk," and I never quite got over the nagging fear.

Here are two pictures from the original sonogram, showing the significant gap at the back of Michael's neck which so concerned the doctors:

nuchal #2 watermarkednuchal #1 Talking is Golden watermarked

Little did we know, at the time, the real cause of all our future problems was staring us in the face in the sonogram that was done at 11 weeks. My son had a frighteningly small lower jaw, a condition known as micrognathia. We all saw the small jaw on the pictures, at 11 weeks and later, at 20 weeks. The doctors even discussed it with me at one point, but "small chins" have been in my family for years. When the doctors heard about our family, they dismissed any real concern over the condition. Micrognathia can be a hallmark for several genetic syndromes, and it could be an indicator of a lot of potential problems, but if the condition ran in my family and we didn't have any genetic issues, no one saw any reason to pursue the matter.

Here is one of the pictures from the 20 week sonogram that shows how small Michael's chin is:

20 wk weak chin watermarked

We all missed another clue, though. We missed that not only did our little guy have micrognathia, but I also had polyhydramnios, meaning I had too much amniotic fluid. Months would pass before we would make the connection between the two conditions, but they were related. Michael's micrognathia was causing my polyhydramnios. To be more specific:

Michael's micrognathia was crowding out his tongue and causing some birth defects that no one could see on the sonogram. Because Michael's tongue didn't have enough room, it got pushed up into the roof of his mouth, so his roof never closed and he was born with a cleft of his soft palate. (This is not a cleft of the hard palate or the lip, but just of the soft palate, basically, the roof of his mouth had a big hole in it.) Because of the position of Michael's tongue (being pushed up and back), and because of the cleft palate, Michael wasn't swallowing the typical amount of amniotic fluid and it was building up. In hindsight, we had a big sign of what was coming, but we weren't looking in the right place. The large nuchal translucency was a red herring. Insofar as anyone knows to this day, it was simply a false positive -- a fluke -- and of no bearing whatsoever on Michael's chin or the problems that was causing. We had been looking for any number of defects, except the one that blindsided us when Michael was born.

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