Monday, December 29, 2008

Help Wanted

Wanted: Babysitter. Must be deaf, on great drugs, or a priest skilled in exorcisms. Please apply immediately!

(Daxton is now teething. Life as we know it has now ceased!)

Saturday, December 27, 2008

Merry Christmas!

Merry Belated Christmas, all! We had a wonderful Christmas here. Santa did come, though I think Dax was a little worried he straightened up too late in the game. I'm extremely glad we didn't disturb Santa as we ran back and forth to Dax's room 15 times that night due to one thing or the other, but we didn't see him. And since we forgot to leave him cookie, he drank some formula, which we thought was pretty rude. That stuff is expensive!

Daxton was adorable opening his gifts... By adorable, I mean half asleep and uninterested for the most part, but that's our boy :) He did enjoy playing his little piano, but Spanky the vibrating monkey was the winner of the day. I was most excited about his big shiny therapy ball but when we put him on it he gave us this sad look and a sigh so we gave him a reprieve for the moment and gave Spanky back to him. What a rotten little boy we've created!
Ma and Papa Scrooge Mills and uncle Jon came up Christmas Day, and we ate like kings that night and the next morning. We even fixed Dax a special meal of baby food ham and vegetables... Which we now know he does not like, not even one little bit. We gave him a little taste of apple cobbler, however, and that went over much better. Oh, no. Not spoiled at all...

I suppose that's the majority of our Christmas news... As for other goings on, things were almost calm this week, with only a few therapies. During our PT session on Christmas Eve, Yum Yum made the comment that she was going to attempt to get more visits approved for Dax as "his progress these past two weeks is nothing short of remarkable." *Proud mommy sigh* His therapy hours will start over in the next calendar year, but she does not want to lose time between now and then. Pray the approvals go through!
As for our little peanut, I have started getting sick again... Funny how I forgot how much fun "all-day" sickness is, when you are starving, then when you eat you spend the rest of the day burping and throwing up in your mouth. Yay! Not to mention that I am not even two months pregnant now but already pee when I sneeze. Fun stuff.

We went to sneak in for a head-count ultrasound yesterday, but the place was closed... So still we wait... And I grow and grow.

On a different note, I finally got through to social security this week to let them know Dax is now out of the hospital. (I say finally, because apparently there is one phone line for 3 counties, and getting through is nearly impossible.) While he was in the hospital he received a $30 check each month to help with expenses. (I'm not ungrateful, because every little bit helps, but there were times when gas prices were so high it would have been more cost effective to burn the check for heat rather than drive to the bank and cash it!) At any rate, I finally got through to the SSI office to let them know he was home, and I went through about 20 minutes of interview to see if he would qualify for ongoing SSI assistance. The lady finally determined we do not qualify based on income, so I told her thank you and Merry Christmas, but she tells me hastily we're not done yet... And spends another 15 minutes telling me about all the documentation we'll have to supply on a monthly basis or we could get in serious trouble with the government. We have to supply this documentation to make sure they are not overpaying us, although they will not be paying us anything. I'm still scratching my head over that one. I'll let you know when I figure it out... In the meantime I guess I'll be getting that paperwork together!

We hope you all had a wonderful Christmas, and we wish you the best in 2009. Love you all!

Tuesday, December 23, 2008

Wow, a post on a Tuesday!

Hi folks,

Quick update... Went to the cardiologist (a different one) yesterday and no changes were made. Got back the lab work and everything looks fine. Today we had absolutely no appointments of any kind. It was very strange, and kind of nice. Tomorrow he has therapy but that's about it, and then on Christmas Ma and Papa Scrooge Mills and uncle Jon are coming up to visit. It'll be the first time Jonathan gets to see Daxton... I hope he behaves himself! (You'll have to guess which one I hope behaves...)

I'm growing exponentially and am getting anxious for that head count... Surely it's just one? Maybe she already weighs 5 lbs! Wouldn't that be nice!

Lots of people have noticed we refer to our peanut as a girl. There's a story there... It's a well-known NICU-ism that there is a hierarchy of strength in the NICU, with little black girls being the strongest babies, and little white boys are at the bottom of the totem pole and are referred to as "wimpy white boys." (We, of course, gave birth to their king!) Everybody else falls somewhere in the middle. So, that being said, I told Shep a long time ago that if we ever had another baby, it was going to be a little black girl. So. for the time being, we're referring to her as "Sheniqua." (Not sure if that's PC? Oh well.)

And that reminds me of a random story:

When Daxton was so jaundiced he was this gorgeous dark golden brown color, and he looked so strange next to me, as the closest thing I saw to the sun for months was his jaundice lamp. (To quote Nurse Natalie, "No one is whiter than you, Mollie.") One day Shep and I were coming in to visit Dax when he was on the critical care unit, and I remember walking in and seeing 5 or 6 people standing at his bedside way down the hall. Once you're in the NICU for a while, you learn that it's NEVER a good thing to walk in and see a lot of people at your bedside! We see the respiratory therapist standing by the bed, and it appears that she has Daxton by the back of the neck, holding him by her side and everyone is looking at her. He can't be out of the bed! She can't hold him that way! Is he dead?! What's going on?! Of course, we freak out and run down to them, and then laugh as we realize the RT was doing a demonstration on positioning babies on the ventilator, and she was using a little black CPR doll to do the demo. Looked EXACTLY like Dax from the back. (The picture above was from "the dark ages." Remember when?)

Not really sure how I got off on that tangent, but I always thought that was funny.

Hope you all are well! Love ya!

Saturday, December 20, 2008

A Very Sleepy Update

Hello all,

What a busy week it's been! I'm back at work full time now, or as full-time as Dax's schedule lets me be, and his dance card is full. We had a cardiology appointment on Wednesday at 10 and actually got out the door and there on time. I was so proud of us! Of course, there was a scheduling snafu and we had to reschedule for tomorrow, but that was to be expected, right? We had two more appointments on Friday with a cardiologist and the pulmonology clinic at Vandy, and they went pretty smoothly. Had to stop by the lab and have some blood drawn afterwards, so we didn't get out the door until after 11. Three hours in a hospital with a baby is a long time, but Daxton did very well. The good news is, both docs were happy with Dax and do not want to see him again for a month. The cardiologist said we may soon make some med increases as Dax gets bigger, but the pulmonologist says we won't make any changes until the spring unless Dax gets sick. And, of course, we won't get his lab work back until later this week.

The cardiologist seemed genuinely surprised we'd had no emergency room visits since we discharged from the hospital. Made me very happy. Of course, me being obsessive about exposing him is probably a big reason why he has not yet been to the ER, and I just wanted to him (every so gently) over the head with his stethoscope as we sometimes have difficulty getting the doctor's office staff, including his, to let us wait in a separate waiting room away from other people. Germs are the #1 reason a preemie would have to get rehospitalized! (And of course, what are doctor's offices full of? Sick people. Ding! Ding! Ding!)

Our little monkey had three PT sessions this week, and he did really well with all of them. His PT, or "Yum-Yum" as we call her, says she sees improvements with each session. She's really good with him, and we're very glad we have her. (But we still miss you Brown Mama!)

We also got to meet with our early intervention therapist for the first time, but she won't start working with us until this week. We made our goals up for early intervention to work on, and they were able to locate a speech therapy company to do in home speech/swallowing therapy for us. Yay! Hopefully we'll get that assessment completed in a week or so.

I have to add here how much we appreciate our private duty nurse. When I say we don't know what we'd do without her, I mean that literally. She's been amazing for us! She gave Dax his Synagis shot this week and he was true to typical form... He cried for about 5 seconds or so, then life goes on... The nurse, however, pouted the rest of the day!

We do still miss all our "aunts" and "uncles" at the hospital, though. You guys mean the world to us!

Daxton started getting some pretty significant nosebleeds this week, apparently due to all the dry air blowing up his nose from his cannula coupled with the dry air in our house caused by gas heat. We tried a humidifier for a few days but didn't really have much luck, but luckily found out the oxygen company has a humidifier that can be put directly on the O2 concentrator to humidify the air as it blows in Dax's nose. Worked like a charm. Yay! He's breathing better, is much happier, and is no longer bleeding!

I have to add here that I STARTED Christmas shopping today. Yay for me! Surely I'll be able to catch some last minute deals?

As far as everything else, Shep and I are e-x-h-a-u-s-t-e-d! We both take a night to get up with Dax, and then a night to sleep, but neither one of us had had a good night's sleep and we're cranky! Couple that with my pregnancy hormones... Let's just say it ain't pretty!

And as far as the pregnancy goes, I'm doing well but I got enormous overnight. I'm not even 2 months yet, but look more like 3-4 months. I had a lady ask me the other day if I was really pregnant or if it might be a thyroid problem. Write that down as one of those things you don't say to a pregnant woman!

Oh, and I have a funny I think you other mommies will understand... Shep was holding Dax today and feeding him, when he started making his poopie face. (That would be Dax, not Shep...) All of a sudden you hear this shwwwwwwwwp POW and I swear to you Shep jumped halfway across the room. Apparently he'd never experienced the intensity of a baby's power poop on his leg before. It was the highlight of my day!

So, again, I've been out of the loop a bit as far as our friends, but have heard that Baby Rosemary is hanging in there and is about to move to a big girl crib! Yay! She still has a blood clot in her arm, so please pray that resolves. Baby Kinsley is doing fantastic and is as feisty as ever. Baby McKenzye is doing great at home, and Baby Landon has finally made it back home after his bout with whooping cough. Please pray for his continued well-being and no more illnesses this winter! Baby Drayke continues to hang in there. Please continue to pray for him and his family. Baby Payton got her first trials off of the ventilator but hasn't been able to stay off it yet. Please pray for strong lungs for her!

Please also say a special prayer for my cousin Elena and her husband Chris, as they are currently experiencing the loss of their unborn child. We love you both, and are so sorry!

Well, Dax is asleep now and I am not, but I should be. This is my night to get up with him... Which is a good thing I guess, as I'll burn off some of the hormone food I ate today!

Love you all! Thanks again for all the continued prayers and support!

Now off to bed......

Thursday, December 18, 2008

Big Step!

Dax is finally sleeping in his room, in his bed, all by himself! And it takes exactly 4.7 seconds for his daddy and I to run in there every time he coughs or wiggles!

We're sooo getting rid of the treadmill.

(BTW-the one on the right is his girlfriend. How sweet is she?)

Sunday, December 14, 2008

More Catch-up

Okay, so just to keep you new folks up to speed, let me tell you a little more about my son. He was born on 4/4/08, and he was immediately placed on the ventilator, and that's where he hung out for 104 days. He graduated to CPAP after a round of steroids, then soon onto the heated cannula. We yo-yoed back and forth a few times, and discharged on 1 liter of flow on a regular cannula after a second round of steroids. He took bottles for a while, but we eventually discontinued the bottles after he got his g-tube and now eat baby food with a spoon instead, and do continuous feeds at night. He had his PDA ligated at 29 days of life and then went on to have ROP surgery, bilateral inguinal hernia repair (and let me add here that the folks at Vandy said they were the biggest they had ever seen!), and g-tube placement. He has an ASD (atrial septal defect), which is a hole in his heart, and may require surgery for that down the road, but not at this time. As far as diagnoses go... We've got extreme prematurity,ELBW (extremely low birth weight), CLD (chronic lung disease), BPD (bronchopulmonary dysplasia), pulmonary hypertension, history of complete renal failure (history of just about everything at some point or another!), inadequate pons and cerebellum, and absent septum pellucidem. I'm sure I'm missing something, but that's plenty for now.

As far as drugs, we discharged on Pulmicort, Viagra, Digoxin, Lasix, iron, and potassium. Not too shabby, huh?

So now, to shift gears, let me tell you how awesome he is. He's now 4 and a half months corrected age, and is functioning at anywhere from 2-4 months in all his developmental levels. He's working on head and trunk control, he tracks slowly, but he tracks, he smiles interactively, he can shift items from hand to hand, he loves to eat and will take any flavor or texture (except my breast milk, of course. Stinker.) He holds his paci and tries to roll over on his own. He's working on sitting up with assistance, and would rather sit than lie down anyday.

So many of his delays can be blamed on environmental elements, such as lying in a bed flat on a vent for over 100 days when he should have been curled up in a ball in my belly. It took forever to do hand to mouth, but his muscles were too short in some places and too long in others, simply due to positional reasons. We're expecting to have some obstacles to overcome, but we do therapy constantly in our house and he WILL overcome whatever obstacles there are. He's already overcome so many!

And now it's time for his breakfast. Cereal +22 cal and some sweet potatoes and corn. Yum!

Oh, and btw, just read back over this and noticed all the run-on sentences. Sooo not worried about them today, sorry! You are forced to translate!

Saturday, December 13, 2008

In the beginning...

Once upon a time we had a very boring life, just me, my husband, and our zoo. We found out in November of 2007 we were expecting, and found out early in December that we were expecting not one, but two! Further down the road, we discover our little peanuts are a boy and a girl, and we're so excited. With the due date of July 27th in mind, but knowing that our twins might come a little sooner, we begin to prepare our lives for the chaos that is two babies...

We had a mostly uneventful pregnancy. I, being the constant obsesser, watched everything I ate and exposed myself to. Working in the field of developmental disabilities, I was particularly mindful and paranoid about my pregnancy to give my babies the maximum chance for happiness and excellence. I was filled with God's spirit as I had never been and believed wholeheartedly He had promised me two perfect, healthy children.

And then came March 22.

I spent the day feeling "funny." Not bad, but funny. Not one thing I could put my finger on or elaborate on. Just funny. Strange enough that I cancelled going to a girls-only party at a friend's house, but not bad. We watched American Gangster at home that night. Very good movie. Prepared to go to bed, and we were asleep by 10. Not long after, I awoke to go to the bathroom, again, and was bleeding and felt something move through my cervix.

I woke my husband and we rushed to the Hendersonville ER, and when the on-call OB saw me he prepared us for the worst. I was 21 weeks pregnant, I was about to birth both of my babies, and nothing could be done to save them. They were too early to survive.

The doctor and nurse ride in the ambulance with me to The Women's Hospital at Centennial, and they take me straight to the high risk OB floor. I'm snowed with magnesium to slow my labor. Family and friends begin to arrive and we wait. My nurse tells me what to expect. They will deliver my little girl, and then try everything possible to keep our little boy in a while longer. She says our girl is too small to save. We argue with her... She's big! Please try to save her! They agree to send in a NICU team as a courtesy, but do not feel she will be big enough to intubate. The sac of fluid that went through my cervix earlier continued to drop, until you can see Aubrie's little feet hanging out and dancing within the sac. Her legs were so tiny, but so strong. At 5:43PM on March 23, Easter Sunday, Miss Aubrie Angelina Sheppard was born, and just as we said, she was big enough to intubate. 1lb, 2oz, 11 inches long. The NICU doctor lets me kiss her as he takes her away, and then she is gone. I send my husband with her and begin the wait.

The race was then on to save Daxton. The doctors hoped to keep him in at least a little longer, with the goal being 10 more weeks. I am already on strict bedrest at this point and have not touched my feet to the floor since midnight the previous day. The doctors add on indicin along with the magnesium and start antibiotics in case of infection. I am placed "upside down" in the bed with my feet higher than my head to keep gravity from causing Daxton to push against my cervix. The wait is on.

Aubrie had a really good night. The doctors were pleased at how well she was doing. The neonatologist comes down to give us a report, and tells us "there's just something about a 'Sheppard' baby born on Easter..." I agree. I still have total faith our babies will be fine.

Minutes turn to hours, and then a day passes with Dax still in. Aubrie's good night turned into a difficult day, and then the bad became worse. The neonatologist comes down to tell us that there is nothing else that can be done, and we can continue to hold on or we could let her go. We agreed to let Aubrie tell us when it was time, and my husband took his phone up and placed it in her isolette so I could talk to her and tell her how much I loved her. The doctor said that's what she needed... She was waiting to hear from me and then she let go. They brought her down so Shep and I could be with her, but she was already gone. We held her and kissed her and changed here into her final clothes, and then we let her go. It was the worst day of my life.

The hours turn to days that we successfully avoid labor. Procardia and terbutaline, a blood pressure and asthma medication, are eventually added due to the occurrence of contractions, along with a multitude of antibiotics and assorted other drugs. I am eventually able to raise my head level with my legs, and then even raise it higher to eat. Almost two weeks pass before the lady comes in to do my ultrasound and we discover, after much ado, that I'll be having Daxton "in about 5 minutes." We wait for my husband to arrive, and we eventually get Mr. Daxton Anthony Sheppard into the world, and he did make a grand entrance, to a standing-room-only crowd. That's another story entirely.

At 23.5 weeks our son was born. 1lb, 7oz. 11.75 inches. Smaller than a Subway sandwich. Perfectly... Perfect... Of course he has severely under-developed... everything... but he's perfect. The doctors take him away and he begins his 8-month long NICU stay, with all the roller-coaster ups and downs they told us to expect but we could never have anticipated.

Thus begins our story. Our son is now home, and we recently discovered we are expecting again. Of course, I could have been blogging this whole time, but that would make sense and show organizational skills, and that's just not me. I did send out multiple emails over the months, and I may add some past ones on here from time to time.

So that's that. Hope you find some entertainment in our chaos!