Friday, December 19, 2008
Family Holiday Pictures
My friend Larisa took some really great family pictures of us for the holidays. It was an amazing feat, especially considering how less-than-cooperative Nathaniel was. Sitting still and smiling was not on his two-year-old agenda!
Thursday, December 11, 2008
When it rains, it pours (on our dining room table)...
Getting Aidan home was not without its other challenges.
The day before, the garbage disposal started spewing out metal with an ear-splitting growl. Corey purchased a replacement, and installed it at one in the morning. Why one in the morning? Well, because that's where he has his free time, I guess. You'd have to ask him.
Then, on the morning of bringing Aidan home, I was upstairs getting dressed and Corey was in the shower. My mom was downstairs with Nathaniel. All of a sudden, water started pouring down the dining room light onto the dining room table. Mom ran upstairs and banged on the bedroom door, "Corey! Erica!" Nathaniel gleefully joined her, "Corey! Erica!" (He thinks calling us by our first names is great fun, but I digress.)
As soon as the shower was shut of, the pouring water stopped. Of course, Corey was still covered in soap. Luckily, the other shower did not seem to cause the issue. There was absolutely no water stain anywhere on the dining room ceiling, and if Mom had not been there, we'd never know what caused a mysterious puddle of water. Right away, I said, "So that's what happened to the Carpenter's laptop!" (We'd borrowed a laptop from some friends that got inexplicably drenched and ruined back in August. We'd seen no water source, drips from the air vents, or ceiling stain. Unable to come up with any other scenario, we'd blamed it on Nathaniel. Poor kid.)
Then, we went to get Aidan and check him out of the hospital. Yay!
Once at home, we called a plumber. When he arrived, we were unable to get the circumstances to recreate for quite a while. Finally, Corey had to put on swim trunks and actually take a shower to get it to pour out of the light again. Turns out, it appeared to be a simple caulking issue. At least, we hope that that's all it was or it's not actually fixed now...
At any rate, this certainly was not what we wanted to spend our time, energy, or money on at this time in our lives. With these latest adventures, the holidays, and astronomical hospital bills, we're simply hemorrhaging money at this point. Turns out they think you can get blood from a turnip.
The day before, the garbage disposal started spewing out metal with an ear-splitting growl. Corey purchased a replacement, and installed it at one in the morning. Why one in the morning? Well, because that's where he has his free time, I guess. You'd have to ask him.
Then, on the morning of bringing Aidan home, I was upstairs getting dressed and Corey was in the shower. My mom was downstairs with Nathaniel. All of a sudden, water started pouring down the dining room light onto the dining room table. Mom ran upstairs and banged on the bedroom door, "Corey! Erica!" Nathaniel gleefully joined her, "Corey! Erica!" (He thinks calling us by our first names is great fun, but I digress.)
As soon as the shower was shut of, the pouring water stopped. Of course, Corey was still covered in soap. Luckily, the other shower did not seem to cause the issue. There was absolutely no water stain anywhere on the dining room ceiling, and if Mom had not been there, we'd never know what caused a mysterious puddle of water. Right away, I said, "So that's what happened to the Carpenter's laptop!" (We'd borrowed a laptop from some friends that got inexplicably drenched and ruined back in August. We'd seen no water source, drips from the air vents, or ceiling stain. Unable to come up with any other scenario, we'd blamed it on Nathaniel. Poor kid.)
Then, we went to get Aidan and check him out of the hospital. Yay!
Once at home, we called a plumber. When he arrived, we were unable to get the circumstances to recreate for quite a while. Finally, Corey had to put on swim trunks and actually take a shower to get it to pour out of the light again. Turns out, it appeared to be a simple caulking issue. At least, we hope that that's all it was or it's not actually fixed now...
At any rate, this certainly was not what we wanted to spend our time, energy, or money on at this time in our lives. With these latest adventures, the holidays, and astronomical hospital bills, we're simply hemorrhaging money at this point. Turns out they think you can get blood from a turnip.
Monday, December 8, 2008
AIDAN IS HOME
We brought Aidan home this afternoon at about 1 pm. He slept the whole way! More news and pictures to follow...
Tuesday, December 2, 2008
Is he EVER leaving?
He's off the oxygen tube, off the feeding tube, done the car seat test, has had the umpteen vaccinations, been circumsized, had his hearing screened - literally everything on the checklist has been done for Aidan to go home. I asked the doctor yesterday, "So, Doc, is our goal to have him be the first kid to actually walk outta here, or what?"
However, if you have been following Aidan's Medical Log, you already know that he is having what they call in the NICU biz "desat episoses". This is where his oxygen levels drop too low and often a nurse has to help him. Not actually resuscitate him, but stimulate or rouse him to get his levels back up. Often, but not always, it has been after eating, which is less incriminating than when it's been during sleep. Still, they say he can't leave until he stops it. (I have literally whispered that to Aidan, "Now, you stop this mister!")
Therefore, this literally means we are waiting to exhale because he is pausing to inhale.
Aidan's Medical Log
Thursday 12/4/08 (Day 72)
7 lbs 4.23 oz (3295 g)
The developmental psychologist has completed her discharge assessment on Aidan.
Wednesday 12/3/08 (Day 71)
7 lbs 4 oz (3290 g)
Corey and I both went in to talk with the doctor today. Aidan's newest echo cardiogram shows the PDA has closed! He has an atrial-level shunt. As a result of our conversation, Aidan has been removed from the pulse oximeter altogether.
Tuesday 12/2/08 (Day 70)
7 lbs 3 oz (3260 g)
1 pm feeding - was given a faster flow nipple and desated again. His heart rate was affected this time.
Monday 12/1/08 (Day 69)
7 lbs 1.93 oz. (3230 g)
5:28 am - another desat episode after the 5 am feeding. There was no apnea or brachcardia associated with it. This will push back his expected release date.
Sunday 11/30/08 (Day 68)
7 lbs .7 oz (3195)
Saturday 11/29/08 (Day 67)
6 lbs 15.3 oz (3155 g)
37 weeks gestation age today!
I spoke with the doctor about the items left to do before his release - the car seat test (where he is placed in his car seat and monitored for an hour), his hearing test, etc. The doctor thinks that, unless there is another desat episode, he will be home sometime later this week!
Friday 11/28/08 (Day 66)
6 lbs 14.6 oz (3135 g)
Thursday 11/27/08 (Day 65)
6 lbs 14.1 oz (3120 g)
I have a sore throat and conjestion, so I visited only once and with a mask on just in case. Aidan had a desat episode this morning.
Wednesday 11/26/08 (Day 64)
6 lbs 14.8 oz (3140 g)
Aidan has been moved to a 3-4 hour 'on demand' feeding cycle. He has been tube free for 24 hours!!!
Tuesday 11/25/08 (Day 63)
6 lbs 14.8 oz (3140 g)
The doctor said today he is doing well! He is "turning a corner". Today, they stopped all meds (except for vitamins), so he is now off of the diuretic, sodium, potassium, etc. He will be given an immunization every 12 hours until all 6 or 7 are given. They have tried him off of the feed tube, too. ('NG' tube)
Monday 11/24/08 (Day 62)
6 lbs 11.9 oz (3060 g)
The doctor has moved him to 60 mL feeds, with additives (calories, etc.) mixed in only every other feed now.
Sunday 11/23/08 (Day 61)
6 lbs 10.4 oz (3015 g)
Aidan is still being treated for the edema (excessive fluid in the tissues resulting in puffy swelling) which is very common in preemies.
Saturday 11/22/08 (Day 60)
6 lbs 10.2 oz (3010 g)
Aidan is 36 weeks today! He has also passed Nathaniel's birth weight of 6 lbs 9 oz. (Nathaniel was born at 37 weeks.)
Friday 11/21/08 (Day 59)
6 lbs 7.71 oz (2940 g)
Aidan is still off of the oxygen air flow support!
Thursday 11/20/08 (Day 58)
6 lbs 5.77 oz (2885 g)
Aidan has been off of his nasal cannula as of 11 am today! Yay!
Wednesday 11/19/08 (Day 57)
6 lbs 3.3. oz (2815 g)
No weight change today.
Corey and I attended the infant CPR class today.
Tuesday 11/18/08 (Day 56)
6 lbs 3.3. oz (2815 g)
Down 15 grams today.
Monday 11/17/08 (Day 55)
6 lbs 3.83 oz
When I fed Aidan this morning, her was off his nasal cannula! He had to go back on it thereafter, though.
Sunday 11/16/08 (Day 54)
6 lbs 3 oz (2810 g)
No weight change today.
Saturday 11/15/08 (Day 53)
6 lbs 3 oz (2810 g)
35 weeks adjusted age today!
Friday 11/14/08 (Day 52)
6 lbs! (2725 g)
The doctor ordered for his feeds to start being given over 30 minutes now. If he tolerates that, bottles can soon be introduced.
Thursday 11/13/08 (Day 51)
5 lbs 13.8 oz (2660 g)
The nurse tried him off of the air flow for a while, but he ended up needing to go back to the 25 mL of 100% oxygen air flow.
Wednesday 11/12/08 (Day 50)
5 lbs 11.7 oz (2600 g)
Now getting 50 mL feeds, still over 45 minutes. Tolerating under 25 mL flow of oxygen sometimes.
Tuesday 11/11/08 (Day 49)
5 lbs 10.8 oz (2575 g)
Monday 11/10/08 (Day 48)
5 lbs 9.24 oz (2530 g)
Tube feeds are being moved from given over 1 hour to over 45 minutes. The feeds have to get down to 30 minutes for him to be tried on a bottle.
Sunday 11/9/08 (Day 47)
5 lbs 7.3 oz (2475 oz)
Saturday 11/8/08 (Day 46)
5 lbs 6 oz (2440 g)
34 weeks old toAidan has tolerated 25 mL flow on his oxygen all day.
Friday 11/7/08 (Day 45)
5 lbs 5 oz (2410 g)
The weight loss is attributed to the new diuretic medication.
Thursday 11/6/08
5 lbs 6.24 oz (2445 g)
Wednesday 11/5/08
5 lbs 3.42 oz (2365 g)
Aidan's last day of Lasix - moving to a daily diuretic instead of the Lasix every other day. The generic of this daily medicine is "diuril".
Tuesday 11/4/08
5 lbs 3.25 oz (2360g)
Aidan has been moved to a "crib"! See "from box to bucket" post.
Monday 11/3/08
5 lbs! (2270 g)
Sunday 11/2/08
4 lbs 14.7 oz (2230 g)
Saturday 11/1/08 (Day 39)
4 lbs 12.5 oz (2170 g)
33 weeks old today!
Friday 10/31/08 (Day 38)
4 lbs 11.5 oz (2140 g)
Now starting 42 mL feeds, still every 3 hours.
Thursday 10/30/08 (Day 37)
4 lbs 8 oz (2040 g)
He has made a move to "wall oxygen" - which means a different rig on his cannula. Currently, he is now on only 100 mL of air flow (was 1.5 L. before), however this is at 100% oxygen. Overall, we understand this to be a big positive step.
Wednesday 10/29/08 (Day 36)
4 lbs 7.25 oz (2020g)
The doctors have decided to double his Lasix dose, from 2 mL to 4 mL doses 2x a day.
Tuesday 10/28/08 (Day 35)
4 lbs 6.2 oz (1990 g)
Incidentally, Corey said this was his birth weight. (Yes, full term!)
Monday 10/27/08 (Day 34)
4 lbs 4 oz (1930 g)
Sunday 10/26/08 (Day 33)
4 lbs 3.4 oz (1910 g)
Saturday 10/25/08 (Day 32)
4 lbs 0.55 oz (1830 g)
32 weeks old! No weight gain or loss today.
Friday 10/24/08 (Day 31)
4 lbs 0.55 oz (1830 g)
Thursday 10/23/08 (Day 30)
3 lbs 13.4 oz (1740g)
They will have do an echo cardiogram on Monday to determine if he needs his PDA surgically ligated.
Wednesday 10/22/08 (Day 29)
3 lbs 11.6 oz (1690 g)
Tuesday 10/21/08 (Day 28)
3 lbs 10.4 oz (1655 g)
Feeds are increased again, to 35 mL.
Monday 10/20/08 (Day 27)
3 lbs 9.5 oz (1630 g)
Starting today, feeds are increased to 32 mL. Residuals (the amount of undigested milk left before they give him his next meal) are down to trace amounts, and they want him to gain weight.
Sunday 10/19/08 (Day 26)
3 lbs 7.56 oz (1575 g)
Due to the weight loss, hey are now adding 1/4 tsp. beneprotien per 100 mL of breast milk fed. They are also now adding sodium chloride to his feeds. He will have lab work on 10/22 to check his electrolytes and Hematocrit (blood level in his system.)
Saturday 10/18/08 (Day 25)
3 lbs 7.9 oz (1585 g)
I asked if there was a weight goal per day, and his nurse for today told me approximately 30 grams a day is a good average.
Friday 10/17/08 (Day 24)
3 lbs 6 oz (1560 g)
Because of the weight gain, no beneprotien was added at this time. However, tests showed low electrolytes so potassium chloride has been added to his meds list.
Thursday 10/16/08 (Day 23)
3 lbs 4 oz (1480 g)
See "Did I mention it's like a roller coaster ride?" for details about today.
Wednesday 10/15/08 (Day 22)
3 lbs 4 oz (1480 g)
Today the kangaroo care went better - I did not have to had him over due desats today. (I had explained to Aidan that I was beginning to take it personally.) When I mentioned the new medicines yesterday, I fogot to mention that he has been getting caffine all along, including back at UNC. It is common for preemies to get caffeine to help with episodes of apnea.
Tuesday 10/14/08 (Day 21)
3 lbs 4 oz (1480 g)
Aidan has been moved to 28 mL feedings now. He has had very little residual. He has had problems today with desats (short for desaturation: drops in blood oxygen saturation levels) and bradycardia today. He will take a drug called lasix every other day to see if fluid is contributing to the desats.
Monday 10/13/08 (Day 20)
3 lbs 3.4 oz (1455 g)
He has had an increasing need for oxygen to keep his saturation levels above the 88% saturation limit set for him. When I was there this morning, he was at 32% oxygen. I was told this is considered a pretty big jump from the 21-25% range he was typically needing at UNC. They are monitoring him closely.
Sunday 10/12/08 (Day 19)
3 lbs 3.2 oz (1450 g)
Aidan is considered "30 weeks" today. Although he was born 19 days ago, for a preemie they call that "19 days out" - not - "19 days old". They focus more on the gestational age, as it is more accurate a description of where a preemie is developmentally.
Saturday 10/11/08 (Day 18)
3 lbs 2.6 oz (1435 g)
12:15 pm: Aidan moved from UNC Newborn Critical Care Center in Chapel Hill to Rex Hospital Special Care Nursery in Raleigh! See the "He's moved to Rex Hospital!" post for more info.
Friday 10/10/08 (Day 17)
3 lbs. 1.3 oz. (1399 g)
Aidan's heart murmur has not resolved on its own, and the nurse told us today that they have done an ultrasound to assess it. It has been sent to the cardiologist, and we are anxiously awaiting the results. They tried him on the 1.5 L of pressure, but went back to the 2 L. His feedings are still at 26 mL every 3 hours.
Thursday 10/9/08 (Day 16)
3 lbs .08 oz. (1386 g)
He's passed his birth weight again! The doctors at rounds today decided to try 1.5 liters pressure, down from the 2 liters his nasal cannula is currently supplying. Everything else is pretty much status quo.
Wednesday 10/8/08 (Day 15)
2 lbs 15.5 oz (1347 g)
Aidan's weight is down again. They are watching him closely after several episodes of apnea. He still has the IV central line, and is still on 2 L pressure and oxygen at 24%. His feedings are holding steady at 26 mL right now, with the added calories.
Tuesday 10/7/08 (Day 14)
3 lbs 0.3 oz. (1372 grams; just a few grams below birth weight of 1375 grams!)
Still some residual and apnea, still has IV central line, etc. His nurse today said he is having a problem with "De-Sat" - or his oxygen saturation dropping too low - especially when he eats. They have upped his oxygen to 30% in response.
Monday 10/6/08 (Day 13)
2 lbs 15.2 oz
Feedings have now been increased to 26 mL @ 24 calories. I saw him this morning for the first time without his IV. The central line is still in; they don't want to move the hep lock until they are sure they don't need it, although they will get rid of it soon since it does pose a risk for infection. His cannula is still at the 2 liters of pressure. Attempts to move it down to 1.5 L have caused the oxygen saturation percentage to dip below the 85% parameter.
Sunday 10/5/08 (Day 12)
2 lbs 13.9 oz
We visited today with Nathaniel, but he did not spend much time with Aidan in the NICU. Big brother's high volume and energy prevented much more than sticking his head in a few times.
Saturday 10/4/08 (Day 11)
12 lbs 13.1 oz
Aidan's day nurse Carol called to let us know that it is November 1st (not October 1st) that RSV season starts. Nathaniel can visit until then! =) We got some video of the boys today. Aidan got the last of his IV lipids today, and IV fluids are scheduled to stop tomorrow night.
Friday 10/3/08 (Day 10)
2 lbs 13.8 oz
Now at 19 mL feedings; will start 21 mL tonight. Cannula still 2 L pressure; oxygen has been increased.
Thursday 10/2/08 (Day 9)
I was there early enough to meet the neonatologist, fellow, resident, and intern during rounds this morning. After which, the CPAP was removed and they went to a nasal cannula. (tube with prongs under the nose). They initially tried 1 liter of pressure, but then switched to a different kind that could tolerate 1.5 L of pressure that could also add heat and humidity to the air. They are starting to add calories to the breastmilk. Corey visited after work, and he was now @ 2 L pressure, but on room oxygen. (21%)
Wednesday 10/1 (Day 8)
Corey and I continue to do "Kangaroo Care" whenever we get the chance. Kangaroo Care is a way to hold a diapered baby against your bare chest skin-to-skin, covered with a blanket. (Like a kangaroo in a mother's pouch.) This helps a preemie maintain their body temperature. Studies have also shown that while being held skin-to-skin, preemies were apt to cry less, have less apnea, and more restful sleep.
Tuesday 9/30/08 (Day 7)
2 lbs 11 oz
We were all excited about Nathaniel's last day to visit. Then, Nathaniel got sick all over the breakfast table! It was very disappointing. Aidan is still having lots of residual in his feedings. However, he is finally passing some meconium. This means the Bili light will be less likely needed.
Monday 9/29/08 (Day 6)
Residuals in feedings are up. =( They had to skip his 5 pm feeding and just use the IV fluids. =( He did not need the Bili light today. The tubes you see on his head are the CPAP (which stands for continuous positive airway pressure). Since being extubated, Aidan still initiates all of his breaths; this CPAP just keeps his lungs a little inflated, even when he exhales. Otherwise, his immature lungs could collapse and stick together.
Sunday 9/28/08 (Day 5)
Successful 7 mL feedings all day today. Nana, Pop-pops, and Uncle David all visited today, but had to leave. He was under the Bili light again today. We were at the NICU from 3 pm to 8 pm, so Nathaniel had no nap and it was a challenge!
Saturday 9/27/08 (Day 4)
I got to change Aidan's tiny diaper and take his temp. During Kangaroo Care, Corey got to "feed" him. Nana Pop-pops came to visit, and Uncle David met him. He is now tolerating feedings, and he sucked a tiny preemie paci today. The nurse told me that is not usually done until 30 weeks or so!
Friday 9/26/08 (Day 3)
I was released from Rex Hospital today around dinner time, and Corey, Nathaniel, and my parents all went to the UNC NICU. We took some video of this first meeting. Corey & I got to hold Aidan George for the very first time this evening!
Thursday, November 13, 2008
The Durant Family
For those friends and family following this that do not know much about the people I work with, I don't know that I can impress upon you what it means to be a member of The Durant Family. Let me set the stage: it is a large school, a multi-track year-round middle school which requires a large staff of about 125 people.
I have taught there since 2002, and each year there are several staff members, students, and student families who are met with some tough times. Deaths of loved ones, surgeries, illnesses...and it is really something the way we all rally around these people. The staff members send out what has become the traditional 'thank-you mass email', which is much more moving than that description suggests. These emails are powerfully worded, the author so appreciative of whatever amazing outreach of love has been bestowed upon them in a difficult time. When I open these emails, I always smile - " Isn't that so nice? Durant came through for someone again! We sure do care about our own..."
I mention all of this because the other day I received in the mail my leave forms from Wake County Human Resources. (I had only had 16 1/2 sick days, not nearly enough to cover a regular maternity leave, let alone the current situation my family and I are in.) I opened the form and saw it - twenty-nine days. Members of the staff had donated their own hard-earned vacation days...a total of twenty-nine of them. Twenty-nine. How do you write a thank you email to people who have given you the incredible gift of six weeks of time with your family when it's needed most? What could one possibly write that would somehow accomplish giving enough thanks for such an act?
I also instantly had an even higher appreciation of these thank-you emails. How hard the author must have worked to consider his or her words to convey the deepest appreciation. For the first time, I truly understood the enormity of their gratitude. And even more than feeling loved, how they had felt so completely humbled. One could certainly never feel deserving of such immense generosity.
As I said, this is not rare but commonplace generosity at the school where I am lucky enough to teach.
And that makes it all the more special.
I have taught there since 2002, and each year there are several staff members, students, and student families who are met with some tough times. Deaths of loved ones, surgeries, illnesses...and it is really something the way we all rally around these people. The staff members send out what has become the traditional 'thank-you mass email', which is much more moving than that description suggests. These emails are powerfully worded, the author so appreciative of whatever amazing outreach of love has been bestowed upon them in a difficult time. When I open these emails, I always smile - " Isn't that so nice? Durant came through for someone again! We sure do care about our own..."
I mention all of this because the other day I received in the mail my leave forms from Wake County Human Resources. (I had only had 16 1/2 sick days, not nearly enough to cover a regular maternity leave, let alone the current situation my family and I are in.) I opened the form and saw it - twenty-nine days. Members of the staff had donated their own hard-earned vacation days...a total of twenty-nine of them. Twenty-nine. How do you write a thank you email to people who have given you the incredible gift of six weeks of time with your family when it's needed most? What could one possibly write that would somehow accomplish giving enough thanks for such an act?
I also instantly had an even higher appreciation of these thank-you emails. How hard the author must have worked to consider his or her words to convey the deepest appreciation. For the first time, I truly understood the enormity of their gratitude. And even more than feeling loved, how they had felt so completely humbled. One could certainly never feel deserving of such immense generosity.
As I said, this is not rare but commonplace generosity at the school where I am lucky enough to teach.
And that makes it all the more special.
Thursday, November 6, 2008
from box to bucket
Sorry for the delay in posting something new. Things have been busy! The big news is that Aidan has been moved from the isolette to a "crib". I put "crib" in quotes, because as I told my mother on the phone, it's more like they have moved him from a plexiglass box to a plexiglass bucket...
Many of you have asked about when Aidan will be released. "How old does he have to be?" or "What weight are they shooting for?" are the usual questions. As it turns out, for preemies there's not an age or weight limit. There are three major things he has to be able to do, on his own and consistently, to be released:
idered the move as an afterthought. Apparently, he ripped out his feeding tube in the middle of the night and his lastest milk meal went everywhere. They has to take him out, give him all new tubes - including the nasal cannula, new bedding, bathe him, and so on. They were going to get him another isolette (the other one was going to need major detailing) when one nurse said, "You know, he has been warm the last few days checked, and he's barely on any heat in the isolette as it is. Think he could make the move to a crib?" They gave it a shot, and so far, so good. Good to know ahead of time that Nathaniel will not be the only Speaks boy who can make a real mess! =)
The eating on his own will come in the next two or three weeks, I am told. Preemies have to get to about 34 weeks developmentally in order to be able to coordinate sucking, swallowing, and breathing. (Aidan "turns" 34 weeks Saturday.) We've been working on some preliminary feeding this week, but it's a work in progress!
The oxygen support is really still needed right now. They are trying to wean him gradually, but they have to watch the desats. When he has a fully belly, or is laying on his back, or especially both, he has the most trouble.
Many of you have asked about when Aidan will be released. "How old does he have to be?" or "What weight are they shooting for?" are the usual questions. As it turns out, for preemies there's not an age or weight limit. There are three major things he has to be able to do, on his own and consistently, to be released:
- He has to be able to maintain his own body temperature.
- He has to be able to eat via nipple instead of tube.
- He has to be able to breathe without oxygen and air pressure support.
idered the move as an afterthought. Apparently, he ripped out his feeding tube in the middle of the night and his lastest milk meal went everywhere. They has to take him out, give him all new tubes - including the nasal cannula, new bedding, bathe him, and so on. They were going to get him another isolette (the other one was going to need major detailing) when one nurse said, "You know, he has been warm the last few days checked, and he's barely on any heat in the isolette as it is. Think he could make the move to a crib?" They gave it a shot, and so far, so good. Good to know ahead of time that Nathaniel will not be the only Speaks boy who can make a real mess! =)The eating on his own will come in the next two or three weeks, I am told. Preemies have to get to about 34 weeks developmentally in order to be able to coordinate sucking, swallowing, and breathing. (Aidan "turns" 34 weeks Saturday.) We've been working on some preliminary feeding this week, but it's a work in progress!
The oxygen support is really still needed right now. They are trying to wean him gradually, but they have to watch the desats. When he has a fully belly, or is laying on his back, or especially both, he has the most trouble.
Monday, November 3, 2008
Corey is NOT in London!
Someone has hacked into Corey's hotmail account (usccheer@hotmail.com) and is sending out emails to people in his address book claiming to be him, and that he is stranded in London at a business conference and needs you to wire money. (You know, there are so many emergency gymnastics conferences in London these days.) Ignore any email about this, and be wary of anything sent from that address in case it bears your computer ill will. Corey is contacting hotmail (MSN) to try to clear it up. Clearly, the fates thought that we might be bored with our current level of daily challenges. =)
Saturday, November 1, 2008
Halloween '08: Aidan George
Aidan is sleeping away in his Halloween costume!The Jack-o-Lantern cap is a gift from some of my co-workers.
The hospital has someone who makes and donates the knit pumpkin caps every year.
Tuesday, October 28, 2008
Worried? Who, us?
There was no news yesterday - not for any of you following this blog, and not for us, either. The echo had not even been conducted when I was there from 9 am - 12 noon. When Corey was there 9 pm - 12 midnight, it had been conducted, but not read by the doctors.
When a doctor breezed through this morning to grab his chart, I had to literally stop her and ask for the results. (A new third doctor is on this week.) Unlike the other two I had met so far, this doc seemed nonchalant about the echo conducted yesterday...and she seemed genuinely surprised we'd had any anxiety at all over the whole thing.
She said she felt the surgery would not be needed any time soon, if at all. She did confirm for me when I asked that the ductus is smaller than it was at the time of the last echo conducted @ UNC.
This one was more like the roller coaster made you think a possible dip was coming . . . and then you were on the Tea Cup Ride.
When a doctor breezed through this morning to grab his chart, I had to literally stop her and ask for the results. (A new third doctor is on this week.) Unlike the other two I had met so far, this doc seemed nonchalant about the echo conducted yesterday...and she seemed genuinely surprised we'd had any anxiety at all over the whole thing.
She said she felt the surgery would not be needed any time soon, if at all. She did confirm for me when I asked that the ductus is smaller than it was at the time of the last echo conducted @ UNC.
This one was more like the roller coaster made you think a possible dip was coming . . . and then you were on the Tea Cup Ride.
Saturday, October 25, 2008
Waiting to Worry
Aidan has not weaned off of oxygen and air pressure as much as the doctors would have liked. Therefore, the doctors have scheduled an echo cardiogram on Monday to determine if he needs his "PDA surgically ligated". This is fancy talk for surgically closing the hole in his heart. The doctor spent a lot of time talking with me about both sides of the medical argument surrounding this surgery, but basically:
Should the surgery be determined necessary, it would also mean another transfer, either back to UNC or to another hospital. You might remember me saying on October 11th when Aidan was transferred from UNC to Rex:
"Rex does not have neonatal cardiology surgical capability, so after reading the ultrasound, [UNC neonatal cardiologist] must be pretty sure Aidan's heart will not need surgery!"
Oops.
So, we're anxiously waiting for Monday to see if we should worry.
You know, more so than usual.
- On one hand, proponents of the surgery point to evidence that after the surgery is done, improvement happens more quickly because there is less strain on the heart."Get in, get out, get him better."
- On the other side, research also shows the PDAs close in their own more often than not. "If it is not causing him imminent danger, why submit to the inherent risks of surgery when it will probably resolve on it's own?"
Should the surgery be determined necessary, it would also mean another transfer, either back to UNC or to another hospital. You might remember me saying on October 11th when Aidan was transferred from UNC to Rex:
"Rex does not have neonatal cardiology surgical capability, so after reading the ultrasound, [UNC neonatal cardiologist] must be pretty sure Aidan's heart will not need surgery!"
Oops.
So, we're anxiously waiting for Monday to see if we should worry.
You know, more so than usual.
Tuesday, October 21, 2008
Thursday, October 16, 2008
Did I mention it's like a roller coaster ride?
Okay. So, today I pointed out to the nurse that he's been the same weight for three days. (See Aidan's Medical Log.) She left to ask the doctor about it, and the doctor came in to "point it out to me" not fifteen minutes later. True story.
She follows this 'revelation' up with, "this [lack of weight gain] is not in the column of things that are okay." As a result of this lack of weight gain (seemingly otherwise unnoticed until I arrived), she decided to increase his feeds to 30 mL each. In addition, she discussed the possibility of adding beneprotein to his breastmilk, along with the vitamins and calories that are already being added.
She went on to say his "lung injury is considerable." (Um, excuse me? Beg your pardon?) She mentioned several other diagnoses of Aidan's that we'd also not yet heard like Pulmonary Insufficiency of Prematurity and Respitory Distress Syndrome. Probably in response to my shocked blank stare, she stressed that it is not yet Chronic Lung Disease because that is not diagnosed until the 36 week mark.
I should also mention that this doctor was casually rattling everything off at approximately the speed of light. I can't process regular conversation this fast, and she's rattling off medical jargon at me. However, I saw no point in asking her to slow down to explain things to me. As she talked, I scribbled down notes like a first day medical intern, and only interrrupted her to make sure I had the names hyperlinked above written down correctly. Now that I have Googled all of these terms, you can be assured I will have some follow-up questions for her tomorrow.
Yesterday, when I asked about the increase in oxygen dependence, a different neonatologist reassured me that his lungs "sounded crystal-clear" and that he is "headed in the right direction." Put your hands in the air, everybody! Wheeeeeeeeeeeee!
She follows this 'revelation' up with, "this [lack of weight gain] is not in the column of things that are okay." As a result of this lack of weight gain (seemingly otherwise unnoticed until I arrived), she decided to increase his feeds to 30 mL each. In addition, she discussed the possibility of adding beneprotein to his breastmilk, along with the vitamins and calories that are already being added.
She went on to say his "lung injury is considerable." (Um, excuse me? Beg your pardon?) She mentioned several other diagnoses of Aidan's that we'd also not yet heard like Pulmonary Insufficiency of Prematurity and Respitory Distress Syndrome. Probably in response to my shocked blank stare, she stressed that it is not yet Chronic Lung Disease because that is not diagnosed until the 36 week mark.
I should also mention that this doctor was casually rattling everything off at approximately the speed of light. I can't process regular conversation this fast, and she's rattling off medical jargon at me. However, I saw no point in asking her to slow down to explain things to me. As she talked, I scribbled down notes like a first day medical intern, and only interrrupted her to make sure I had the names hyperlinked above written down correctly. Now that I have Googled all of these terms, you can be assured I will have some follow-up questions for her tomorrow.
Yesterday, when I asked about the increase in oxygen dependence, a different neonatologist reassured me that his lungs "sounded crystal-clear" and that he is "headed in the right direction." Put your hands in the air, everybody! Wheeeeeeeeeeeee!
Wednesday, October 15, 2008
Pssst! Humor!
Aidan has been at Rex for five days now, and Corey and I have been readjusting our routine around the new parameters of our day-to-day existence. I have had some time to reflect and revisit some of those little moments where the whisper of humor went almost unheard in our whirlwind of emotional disquiet.
The Out-of-Touch Nurse
Not 48 hours postpartum and just released from the hospital, I was standing in the UNC NICU numbly taking in the sight of all the tubes, machines and a very, very small Aidan George. I was sniffling and my eyes were red. A nurse came over and asked me, "Are you sick?" in a slightly alarmed, 'then-what-are-you-doing-in-here' tone.
"Uh, no."
"Oh," she says, "Allergies, huh."
"Uh, no."
Wow. Seriously?
The Over-In-Touch Nurse
The next day, a (different) nurse asked me a set of questions. She forced a nonchalant manner, but was too intently listening to my answers to sell the conversation as casual.
"So, are you sleeping okay?"
"Um, not really."
"Eating regularly?"
"Um, not really."
"Are you feeling weepy and overwhelmed a lot?"
"Well, yeah."
"Honey, do you want to talk to someone about postpartum depression?"
"Um, not really."
The first laugh I had after having Aidan
While recounting the conversation of questions above, I pointed out to my friend Nancy that trying to assess postpartum depression in a mother with a baby in a NICU is like assessing a two-year-old with ADHD - there's no way to distinguish the expected reality with 'symptoms' of a condition. She agreed and said: "Erica, you just tell them:
Jealous big brother tries to steer the car
Nathaniel has been really amazing. We have video and memories of moments with him saying the most adorable, sweet, gentle things. However, good old sibling rivalry doesn't seem to take long to settle in, either. While in the car starting off on one of the long 45 minute drives to Chapel Hill, Corey and I announce, "We're coming baby Aidan!" as was our custom in order to give Nathaniel a heads-up of what was to come. He had always repeated it before, but this time there was this long pause as he contemplated our proposition. Then, he brightly suggested, "We're coming Nana!"
Daddy makes lunch
We are aware that even under normal circumstances, a two-year-old wants control and independence. As such, even amongst the chaos, we offer him choices as often as possible. So, one random day Corey and I were scrambling to get things in order to go visit Aidan. I was pumping (again) and Corey was making Nathaniel a sandwich for lunch:
"Nathaniel, do you want your sandwich cut in squares or triangles?"
"No triangles!"
"You want it in squares, then?"
"No kwares!"
"Rectangles?"
"No 'ectangles!"
"Circles?"
"No irr-cals!"
"Trapezoids?"
"No appy-zoids!"
"Polygons?"
"No olly-gones!!!"
"Dodecahedrons?"
Nathaniel's only response to this was a stony silence at the prospect of having to repeat this shape's name in order to say 'no'. Satisfied, my husband turned to me.
"Honey, how many sides are in a dodecahedron?
The Out-of-Touch Nurse
Not 48 hours postpartum and just released from the hospital, I was standing in the UNC NICU numbly taking in the sight of all the tubes, machines and a very, very small Aidan George. I was sniffling and my eyes were red. A nurse came over and asked me, "Are you sick?" in a slightly alarmed, 'then-what-are-you-doing-in-here' tone.
"Uh, no."
"Oh," she says, "Allergies, huh."
"Uh, no."
Wow. Seriously?
The Over-In-Touch Nurse
The next day, a (different) nurse asked me a set of questions. She forced a nonchalant manner, but was too intently listening to my answers to sell the conversation as casual.
"So, are you sleeping okay?"
"Um, not really."
"Eating regularly?"
"Um, not really."
"Are you feeling weepy and overwhelmed a lot?"
"Well, yeah."
"Honey, do you want to talk to someone about postpartum depression?"
"Um, not really."
The first laugh I had after having Aidan
While recounting the conversation of questions above, I pointed out to my friend Nancy that trying to assess postpartum depression in a mother with a baby in a NICU is like assessing a two-year-old with ADHD - there's no way to distinguish the expected reality with 'symptoms' of a condition. She agreed and said: "Erica, you just tell them:
"No, I'm not okay, but I know that I'm not okay...
...and I'm okay with that."
...and I'm okay with that."
Jealous big brother tries to steer the car
Nathaniel has been really amazing. We have video and memories of moments with him saying the most adorable, sweet, gentle things. However, good old sibling rivalry doesn't seem to take long to settle in, either. While in the car starting off on one of the long 45 minute drives to Chapel Hill, Corey and I announce, "We're coming baby Aidan!" as was our custom in order to give Nathaniel a heads-up of what was to come. He had always repeated it before, but this time there was this long pause as he contemplated our proposition. Then, he brightly suggested, "We're coming Nana!"
Daddy makes lunch
We are aware that even under normal circumstances, a two-year-old wants control and independence. As such, even amongst the chaos, we offer him choices as often as possible. So, one random day Corey and I were scrambling to get things in order to go visit Aidan. I was pumping (again) and Corey was making Nathaniel a sandwich for lunch:
"Nathaniel, do you want your sandwich cut in squares or triangles?"
"No triangles!"
"You want it in squares, then?"
"No kwares!"
"Rectangles?"
"No 'ectangles!"
"Circles?"
"No irr-cals!"
"Trapezoids?"
"No appy-zoids!"
"Polygons?"
"No olly-gones!!!"
"Dodecahedrons?"
Nathaniel's only response to this was a stony silence at the prospect of having to repeat this shape's name in order to say 'no'. Satisfied, my husband turned to me.
"Honey, how many sides are in a dodecahedron?
Saturday, October 11, 2008
He's settled in @ Rex.
I got to visit briefly at Rex from about 5:30 pm until they closed for shift change at 6:30 pm. As you can see from the picture, he has graduated up to an isolette. His first nurse at Rex, Shannon, told me the isolette can convert back into a "warmer bed" if he needs it:
I have a close-up shot of his new surroundings below. He seemed very tucked in and cozy. It was dimmer in this room and I did not want to use the flash, so the picture was very dark. I have enhanced it some. He is also now in clothes since he is in the isolette and not the warmer bed, where he'd been exposed and only in a diaper. He was very bundled and snuggly:
The set up at Rex is much smaller and intimate. Aidan is in a room with only one other roommate, rather than in the E pod with at least a dozen other babies. (Even so, Pod E was referred to as a 'small' pod by the UNC nurses. Pods A-D were easily twice as big as E.) As such, it is quieter and feels slower-paced. The number of machines and nurses bustling around is as dramatically reduced as the number of babies in the room, and there is more space around him for kangaroo care and such. Like UNC, only two visitors are allowed in at a time.
I have a close-up shot of his new surroundings below. He seemed very tucked in and cozy. It was dimmer in this room and I did not want to use the flash, so the picture was very dark. I have enhanced it some. He is also now in clothes since he is in the isolette and not the warmer bed, where he'd been exposed and only in a diaper. He was very bundled and snuggly:
The set up at Rex is much smaller and intimate. Aidan is in a room with only one other roommate, rather than in the E pod with at least a dozen other babies. (Even so, Pod E was referred to as a 'small' pod by the UNC nurses. Pods A-D were easily twice as big as E.) As such, it is quieter and feels slower-paced. The number of machines and nurses bustling around is as dramatically reduced as the number of babies in the room, and there is more space around him for kangaroo care and such. Like UNC, only two visitors are allowed in at a time.
He's moved to Rex Hospital!
I got the call from UNC nurse Carol at 12:15 this afternoon! They had packed him up and were loading him into the special care vehicle. The results of his echo cardiogram showed the murmur to be caused by a small PDA (Patent Ductus Arteriosus). More on these terms related to a preemie heart murmur here.
Anyway, this move means two major things:
While Corey and Nathaniel were still fast asleep, I would leave by 8 am visit the UNC Hospital in the morning. I have to pump milk every 3-4 hours, so I'd have to do that before I left. I'd try to make it by the time the doctors did the rounds, but that did not always happen, depending on the notorious I-40 traffic. The highlight was I'd get to do kangaroo care, including holding Aidan during his 11:00 - 11:30 feeding! =) I'd have to pump at the hospital, and make sure I left in time to meet Corey in a Rite Aid parking lot off Corey's I-540 Gym exit in order to take over care of Nathaniel so Corey could get to work by 2 pm.
Corey would work his 2-9 pm shift while Nathaniel and I would head back home to deal with dinner, bath & bed time, etc. Corey would then go after work to visit Aidan from 10 pm to around midnight or so, arriving home close to 1 am. He'd wake me to pump and set an alarm to wake up for Aidan's 4 am "feeding", after which I'd get a few more hours of sleep before waking up to pump & leave for UNC again.
So, the great news is Rex Hospital - where I had Aidan and also Nathaniel in 2006 - is only about 20 minutes away, not 45 minutes away. Parking is free, not $1.25 an hour. On the down side, they are closed for visitation from 6:30 - 7:45 both am & pm everyday, where UNC had been open for visitation 24 hours. The really big bummer is Nathaniel can not visit at all at Rex. =(
I called and spoke with his nurse for today at Rex, and he's arrived safe and sound. They had had to skip his noontime feeding because they were in transit. As soon as Corey is home today (he works 9-4 on Saturdays) and Nathaniel is up from a nap, we'll head over to see him at Rex! We'll take and post pictures of him in his new location soon! =)
Anyway, this move means two major things:
- The heart murmur is not overly concerning the UNC neonatal cardiologist. Rex does not have neonatal cardiology surgical capability, so after reading the ultrasound, s/he must be pretty sure Aidan's heart will not need surgery! =)
- The UNC hospital where he's been his first eighteen days of life is about 45 minutes away (out in Chapel Hill, for those of you not from 'round here). Corey and I were each doing this a hour and a half round trip daily. (No big deal - gas prices are so low nowadays and we have so much free time...)
While Corey and Nathaniel were still fast asleep, I would leave by 8 am visit the UNC Hospital in the morning. I have to pump milk every 3-4 hours, so I'd have to do that before I left. I'd try to make it by the time the doctors did the rounds, but that did not always happen, depending on the notorious I-40 traffic. The highlight was I'd get to do kangaroo care, including holding Aidan during his 11:00 - 11:30 feeding! =) I'd have to pump at the hospital, and make sure I left in time to meet Corey in a Rite Aid parking lot off Corey's I-540 Gym exit in order to take over care of Nathaniel so Corey could get to work by 2 pm.
Corey would work his 2-9 pm shift while Nathaniel and I would head back home to deal with dinner, bath & bed time, etc. Corey would then go after work to visit Aidan from 10 pm to around midnight or so, arriving home close to 1 am. He'd wake me to pump and set an alarm to wake up for Aidan's 4 am "feeding", after which I'd get a few more hours of sleep before waking up to pump & leave for UNC again.
So, the great news is Rex Hospital - where I had Aidan and also Nathaniel in 2006 - is only about 20 minutes away, not 45 minutes away. Parking is free, not $1.25 an hour. On the down side, they are closed for visitation from 6:30 - 7:45 both am & pm everyday, where UNC had been open for visitation 24 hours. The really big bummer is Nathaniel can not visit at all at Rex. =(
I called and spoke with his nurse for today at Rex, and he's arrived safe and sound. They had had to skip his noontime feeding because they were in transit. As soon as Corey is home today (he works 9-4 on Saturdays) and Nathaniel is up from a nap, we'll head over to see him at Rex! We'll take and post pictures of him in his new location soon! =)
Wednesday, October 8, 2008
Monday, October 6, 2008
"But it can't be labor, I'm only 27 weeks along..."
Looking back, it's one of the stupidest rationalizing statements I've ever made. When in full swing labor with white-hot contractions, you'd think one would have more clarity.
I was wheeled into Rex Hospital's triage at 1:05 am and had Aidan George at 1:12 am on September 24th. (He was due December 20th.) They checked me into the hospital after he was already out. He weighed 3 lbs 1/2 oz - which I am told is hefty for a baby 3 months premature. (My yardstick for 'hefty' is skewed; Aidan's big brother Nathaniel is age 2 and wears 5T. He weighs 42 pounds.)
Not 48 hours earlier, I'd been driving the six hour drive home from my parents' house. If one is going to give birth to a preemie at 27 weeks gestation, I don't imagine alone (other than with said toddler) on the side of I-95 in Dillon, SC is where one would like to be. *shudder* Also narrowly missed was joining my mother in what would have then been a family tradition of having second-born children in the car on the way to the hospital. (To their credit, she and Dad did not also actually have the first born with them in the car at the time.)
When I asked nurse Carla how I went from 6 centimeters @ 1:05 to having him seven minutes later, she smiled sheepishly. "I lied." She explained she could not force herself to say anything over 6 cm without screaming. "She was amazing," Carla said to the other nurses, pointing to me. [In triage] "her little boy was sitting two feet from her. I could read every word she mouthed, but not one bad word actually came out."
Apparently during this time around 1 am, my dear husband was on the phone with my dear friend, Nancy. The plan had been that when I went into labor (you know, in December) she would watch Nathaniel until my parents got into town. She quotes this frantic call from Corey as, "Nancy. I need you. We are at the hospital, and . . . oh! Gotta go!" (*click*)
The nurse had just told Corey that baby boy was already here. No twenty-one hours of labor needed this time around. As for Nancy, she said she told the lord she'd just pray from her couch until she got a call back...
I was wheeled into Rex Hospital's triage at 1:05 am and had Aidan George at 1:12 am on September 24th. (He was due December 20th.) They checked me into the hospital after he was already out. He weighed 3 lbs 1/2 oz - which I am told is hefty for a baby 3 months premature. (My yardstick for 'hefty' is skewed; Aidan's big brother Nathaniel is age 2 and wears 5T. He weighs 42 pounds.)
Not 48 hours earlier, I'd been driving the six hour drive home from my parents' house. If one is going to give birth to a preemie at 27 weeks gestation, I don't imagine alone (other than with said toddler) on the side of I-95 in Dillon, SC is where one would like to be. *shudder* Also narrowly missed was joining my mother in what would have then been a family tradition of having second-born children in the car on the way to the hospital. (To their credit, she and Dad did not also actually have the first born with them in the car at the time.)
When I asked nurse Carla how I went from 6 centimeters @ 1:05 to having him seven minutes later, she smiled sheepishly. "I lied." She explained she could not force herself to say anything over 6 cm without screaming. "She was amazing," Carla said to the other nurses, pointing to me. [In triage] "her little boy was sitting two feet from her. I could read every word she mouthed, but not one bad word actually came out."
Apparently during this time around 1 am, my dear husband was on the phone with my dear friend, Nancy. The plan had been that when I went into labor (you know, in December) she would watch Nathaniel until my parents got into town. She quotes this frantic call from Corey as, "Nancy. I need you. We are at the hospital, and . . . oh! Gotta go!" (*click*)
The nurse had just told Corey that baby boy was already here. No twenty-one hours of labor needed this time around. As for Nancy, she said she told the lord she'd just pray from her couch until she got a call back...
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