Friday, June 8, 2012

I love our kids' doctor

Once again, I think we have the greatest pediatrician. Elliott's assigned doctor was the same one assigned to Truman when he was a feeder-grower and has served as his pediatrician ever since in a Baylor NICU graduate clinic. Elliott's growth rate is slowing since we are doing two nursing sessions a day, which means that milk doesn't get fortified with Human Milk Fortifier like the expressed milk does. (He's up to 4 lbs, 6.5 ounces by the way). I spoke with his doctor about it this morning, and he said that since Elliott is still gaining weight on a daily basis, it's more important that he learns to breastfeed well than it is to grow him quickly. One of things I have always loved about Dr. Suterwala is his sense of perspective -- he never loses the big picture in the face of the daily stats and expectations with a preemie.

Friday, June 1, 2012

Four pounds!

Elliott is now four pounds!!  That means he gained almost a pound in week!  As of today, he is also graduating out of the isolette to an open air bassinet and is attempting his first bottle feed.

Thursday, May 31, 2012

Three Weeks Old

Elliott

Chronological Age: 3 weeks
Gestational Age: 31.5 weeks
Current Weight: 3 lbs, 13.7 ounces

Elliott continues to do far better than he should for his gestational age.  His feeds have increased 1.15 ounces per feed.  The time per feeding has decreased to 1.5 hours.  (His milk is fed via tube over a pump.).  In the biggest news, we started "lick and cuddle" sessions on Monday.  These are designed to give the baby some skin-to-skin time with Mama and get familiar with the breast, the smell of Mom's milk, and the physical position of breastfeeding.  Instead of  just cuddling, Elliott latched on for 45 minutes on the first try.  Because he's not yet old enough to coordinate sucking, swallowing, and breathing at the same time, we do this after I've pumped beforehand so that if he does latch, he gets small amounts rather than being overwhelmed.  Every day since, we have tried again, and Elliott continues to latch on.  I wouldn't really call it nursing, but it's a good sign for when we do start learning to actually nurse, and he is getting some milk in the process.  He had a repeat head sonogram yesterday, and the grade I brain bleed has not worsened, nor have any others appeared.  So, we appear to be in the clear on brain damage for Elliott!!!!!

In not so good news, Elliott's brady episodes seem to be increasing, or at least not improving.   While he will eventually outgrow them, bradys are the sort of thing that cause some kids' NICU stays to drag on.  Let's hope that's not the case with Elliott.

He is fully maintaining his own temperature now.  He's still in an isolette, but he is wearing clothes, and they've turned the air control off.  Because he can maintain his own temperature, he was given a bath this morning, and we can now confirm that he does have reddish hair.  We can't exactly decide whether it's strawberry blonde or a light auburn. 

Truman

Today is Truman's last day of the Preschool Program for Children with Disabilities.  After today, he is a fully mainstreamed, unmedicated, unassisted kindergartener.  Yes, he will still be in the special ed system since he will be pulled out for speech therapy twice a week, and he does require more redirection than most kids, and his teacher is already considering adaptations to help with writing and fine motor delays, but all that is so small compared to what we expected the end game would be when he entered into the PPCD program three years ago.  A permanent transfer to the school where he attended PPCD Kindergarten was approved, so he will spend the next seven years at Moss Haven Elementary.  We love the campus and its staff and are very excited to have Truman there for the long haul (and hopefully Elliott, too, in either 5 or 6 years). 

Truman has an exciting summer lined up with day camps at the Arboretum, Museum of Science and Nature, and Dallas Children's Aquarium, as well as Bible School, tee ball, swim lessons, and a trip to East Texas to spend a week with the grandparents and attend Bible School there as well.  Oh, and sometime this summer, he'll have a baby brother at home.  He is already loving the fact that our swimming pool is open for the season and has asked to swim every day this week.  I've enrolled him in the Mayor's Summer Reading Program and have been trying to get him excited about spending more time having Daddy read to him during the day and earning prizes for listening to books.  We hope maybe by the end of the summer, he'll be doing a little reading himself.  We've also got learning to tie his shoes on the agenda for this summer, too, and in other growing up, Truman slept for the first time last night without a bed rail.  Having a newborn and kindergartener at the same time really does highlight how fast kids really do grow up.

Wednesday, May 23, 2012

May 23

Elliott has finally made it back over 3 lbs.  Last night's weight was 3 lbs, 0.9 ounces.

Tuesday, May 22, 2012

Elliott Update

Chronological Age: 12 days
Gestational Age: 30 weeks, 2 days
Current weight: 2 lbs, 15 ounces
Current length: 16 inches

Elliott continues to do amazingly well considering his gestational age.  As of this weekend, he is officially a "feeder grower."  He has been off all respiratory support -- no CPAP, no cannula, no oxygen of any kind -- since Saturday.  He has only had one spit up of consequence since coming off the CPAP and is tolerating his feeds well.  He is currently receiving 27 CCs of breast milk every 3 hours.  That just under a ounce per feed or a little over 7 ounces a day.  He no longer has an IV or any other form of nutrition.  He is still receiving caffeine, some sodium chloride for electrolytes, and some vitamins.  Everyone, including the medical staff, seems completely surprised by how well he is doing.  I think the four days of labor bought us important time for steroids for his lungs and magnesium for his brain.

We learned he did suffer a grade I brain hemorrhage, but unlike the hemorrhages suffered by Truman, grade I bleeds generally resolve themselves with no long-term consequences.  His next head scan is on May 30 to see if the hemorrhage has resolved itself or worsened.

We are a bit concerned at this point about bradycardia episodes that he began having over the weekend.  Generally they only last a couple of seconds, and he is able to maintain his oxygen levels and recover on his own.  But, the nurses have had to stimulate him a few times to get  his heart rate back up on episodes over the last couple of days.  While these are common, we really hope he outgrows them soon so that they don't delay his homecoming.

We are also looking forward to his gaining some weight.  At this point, he seems to be stuck between 2 lbs, 14 ounces and 2 lbs, 15 ounces.


Monday, May 14, 2012

Elliott Benjamin, May 10, 2012

After four days of trying to stave off labor, Elliott Benjamin made his early debut into the world at 28.5 weeks of gestation.  He weighed 3 lbs, 3 ounces and measured 16 inches long.  He was born crying and with his eyes open.  He appears to have reddish-brown hair.  He is currently in the Baylor Medical Center NICU and will be there until sometime in July.

He spent his first two days on a conventional ventilator before graduating to a SiPAP machine (a step in between the more common CPAP and a ventilator) on Saturday.  On Sunday, he graduated to a CPAP.  He continues to be on the CPAP, but the nurse practitioner hinted this morning that he might graduated to canula later this week.  He has been on room air this entire time, and we are not aware of any desats or any episodes of bradycardia.

He has tolerated feeds well and as of today is up to half an ounce of breast milk every three hours.  Unlike his brother, there are no additives to increase the calories.  He is expected to be at "full feeds" later in the week and off all supplemental IV nutrition.

Bloodwork yesterday showed some jaundice, so he was placed under the bili lights.  Today's bloodwork shows the bilirubin back down to normal levels, but he will be under the bili lights another day as a preventive measure.

He is on caffeine and antibiotics as a general preventive measure, but is on no other meds and shows no need for other meds at this point.

Although we hoped never to be back in this place, this road is so very different than Truman's road.  Elliott is behaving more like a typical preemie with no particular complications.  Instead of waiting for the other shoe to drop or the latest bad report, we are waiting instead for Elliott to grow bigger and stronger and wondering when he will join our family at home.

Wednesday, April 25, 2012

"Well, that's surprising."

Truman's response to a reading of "It's Not the Stork" and learning exactly how Baby Brother got into my belly.

"This baby is huge!"

Baby Brother Updates

"This baby is huge!" -- Those were the words of Dr. Martin after this week's sonogram.  At 26 weeks, 1 day, Baby Brother was measuring two weeks ahead and estimated to weigh 2 lbs, 12.8 ounces.  To put that in perspective, Truman weighed only 1 lb, 12 ounces the first time I held him at one month of age and 2 lbs, 15.6 ounces the first time I nursed him at 10 weeks of age (or the equivalent of 33 week gestation).  It's pretty cool to realize I've already held a baby even larger than the one I'm currently carrying.  I'm on my way to a very large baby, which is fabulous in my opinion.

Everything was still looking good at this week's appointment.  My gestational diabetes test looks great, my weight gain is good, the amniotic fluid looks good, and my cervical measurement is OK.  It went down to 3.2 because I had a more active weekend.  That's still a safe range, but also a reminder to take a little easier next weekend.

26 weeks marks a huge milestone in terms of infant mortality and postnatal outcomes.  Although it is still far too soon for Baby Brother to be born, he would be in exponentially better shape than Truman were he to come at this point.

Ben has been working diligently on the nursery so that I can organize all the boxes of baby clothes and baby gear filling up the nursery and figure out what else we need to replace before Baby Brother's arrival.  I'm so ready to get his room prepared, even though he won't use it for a long time.

Truman Updates

I forgot to report that Truman earned MVP for the two-week period in his mainstream class a couple of weeks.  We still get lots of reports of naughty days from his PPCD class, but he seems to do OK in his mainstream class most days.

He weighed in at 35 pounds at his most recent weight check about six weeks ago, finally hitting a mark we've been working toward for a while.  He's still not filling out at all, but he is getting taller and although he's still the shortest kid in his class, he's not so short that he's out of place among most of his peers anymore.

He's still learning like a sponge, regularly sharing facts with me that I didn't know and reminding me of things I had long ago forgotten.  He's starting to show some reading readiness signs like spelling, identifying how words start and end, and sounding out a few short words on rare occasion.  He impresses me all the time with his intelligence and level of understanding of things I would never have expected him to understand at this age, like his understanding of how some of the changes in my body may be affecting me.  He asks me regularly about whether the stretching of my belly hurts me or makes me sore.




Tuesday, April 17, 2012

"The risk has passed"

Due to large size of our growing second son, my OB/GYN announced at this week's meeting that she believes the risk for cervical incompetence in this pregnancy has mostly passed.  According to my doctor, once the baby reaches about 26 weeks in size, his weight is large enough to begin dissipating across the uterus and he basically serves as his own cervical stopper.  Well, although we just passed the 25-week mark, this guy is measuring about 10 days head, making him a 26-weeker from a size perspective.  He currently weighs an estimated 2 lbs, 3 ounces.  It appears the cerclage has worked!

This week's good news is far from a diagnosis of a risk-free pregnancy from this point forward because although all medical signs point to incompetent cervix, we might have been wrong about why I went into labor.  As a result, we're keeping all the protocols in place for reduced activity, weekly cervical length checks, and anti-contraction injections.  It does mean that we can start to relax a little as to the biggest risk this pregnancy had going in.

My gestational diabetes screen came back with flying colors as well, and my weight gain is on track, so a very healthy pregnancy and good doctor visit all around.

As we get past these milestones and march toward an end to this pregnancy that actually results in a baby, we finally feel confident to take care of some of the things that need to happen to prepare.  This weekend, we settled on a name for the new little one, hired a doula, bought a new dresser for Truman's room so that the baby can have the one in Truman's room that matches the crib, completed a registry, and let Truman make the final decision on bedding for his little brother.  He chose pirate ships, of course.

I'm also starting to feel the need to take care of all the summer details for Truman so that everything is in place in case this baby does decide to make an early entrance after all.  With some input from Truman, in the last week we've also picked Truman's summer day camps and paid and confirmed six weeks worth of day camps, signed Truman up for T ball, and scheduled private swim lessons.  We bought his summer sandals this week, and I ordered warm weather church shirts.

Truman and I also started talking this week about what he wants to do for his birthday party and who he wants to invite.  Considering his birthday is 10 days after my due date, I really don't want to put that off to the last minute.  Also, as the mom of a kid with a summer birthday, I've learned you have to think about the invite list before school is out so that you can find out the last names and contact information for the kids your child wants to invite.  Having a first name only in the middle of July doesn't get us very far.

Monday, April 9, 2012

24 Weeks

At the Ennis Bluebonnet Trails
I am now officially 24 weeks, 1 day pregnant -- a full eight days past the point at which I delivered Truman.  Everything looks great.  No signs of premature labor or a shortening cervix.  The baby is now measuring 1 lb, 14.5 ounces, which is about a week-and-a-half ahead of schedule.  Other than back pain and already feeling quite unwieldy, I feel great.  

Truman continues to ask lots of questions about when his baby brother is coming and what birth will be like for me.  It is occurring to me that we need to start getting ready for this baby.  We've got a new nursery to prepare, a name to pick out, classes to attend.  Even though this is our second child, it's beginning to look like we could actually have a full-term healthy baby, and we know nothing about "take home" babies.

Monday, March 26, 2012

A milestone met

I can now say that my second child will be bigger than my first.  At 22 weeks, 1 day, this baby is weighing in at 1 lb, 6.5 ounces -- 2.5 ounces heavier than Truman did at birth.  Also, my cervix is now longer than it has been my entire pregnancy.  Here's looking forward to another milestone in a week when I have passed Truman's gestational age.

Thursday, March 22, 2012

Another week down

Baby Update
Another week, another good prenatal appointment.  We had our 21-week appointment on Monday.  My cervix is down slightly, but still in good range.  The baby is growing well and now weighs in at 18 ounces--just two ounces shy of Truman's birth weight.  We also had a great appointment and sonogram with Truman at 21 weeks as well.  It was sometime between then and 23 weeks that things went south.  So, keep your fingers crossed that we can get past these next couple of weeks without a repeat.

Truman Update
Truman had his 5.5 year weight check on Monday as well.  He weighed in at 35.3 pounds and 41 inches tall -- still below the charts for his age, but acceptable progress.  His pediatrician is once again suggesting in-patient feeding therapy, but by this age, that means in-patient without mom and dad for at least two weeks, then only once daily visits from mom and dad for the next three or four weeks.  He's going to do some research for us to see what the options are.  But, I've already decided he is simply too young for that sort of time away from us.  We'll just have to keep slugging through for now.

For fun, I thought I would share a couple of recent Trumanisms:

Upon seeing his brother's 20-week sono: "Why he is naked?"

While looking at a small bust of Mozart he insists on keeping on his nightstand: "Mozart wrote boootiful music, but then he died.  Daddy and me didn't get to meet him."




Tuesday, March 13, 2012

Here we grow

So, it's been more than a year since I posted. It's time to get back at it, as we are approaching a point in the Price family where friends and family may want to get more current updates. Before we get to that, however, first a Truman update.

Truman is now 5-and-a-half and in his first year of kindergarten. He is attending Moss Haven Elementary in its Preschool Program for Disabilities Kindergarten program this year and spending about half his day in mainstream kindergarten. After spending much of the first semester dealing with behaviorial issues, Truman has settled in well and is focused on all academic goals this semester. He will be fully mainstreamed next year, only qualifying for speech as a special service. Everyone is comfortable that there are no cognitive delays and that he is an extremely bright and capable boy ready for kindergarten. He loves school.

He still struggles with handwriting and other fine motor and sensory issues and is back in occupational therapy for those issues. Eating is still a major, major issue, and Truman to be very small for his age, weighing in somewhere around 33 pounds and measuring about 41 inches. Truman continues to be a very happy, energetic, and witty boy. He astounds us regularly with his perceptiveness, intelligence, and musical aptitude. He is into pretending, pirates, boats, Star Wars, trains, and cars. He had his first lesson on riding a bicycle yesterday. He is playing soccer and enjoys the kindergarten choir at church.

Now, for the Price family news. This family of three will be a family of four later this year. We are currently expecting our second son due July 29. We are hoping for a full-term baby, but our first goal is to make it to April 26, which is 26 weeks. I am currently 20 weeks, 2 days pregnant. The baby is measuring at 21 weeks, 3 days and weighing in at 1 pound. Considering Truman was big for his gestational age at birth, we know that every ounce counts.

It has been a long road getting this far. We learned that not only do I suffer from incompetent cervix that caused Truman's early delivery, I also have an autoimmune issue that causes miscarriages (but that doesn't have any negative effect on my non-pregnant body). So, after four miscarriages, this pregnancy involved significant intervention with a reproductive endocronologist before to ensure the healthiest possible start and has had huge intervention since becoming pregnant. I underwent five rounds of intravenous immune suppression infusions during the first trimester, had a cerclage procedure at 11 weeks to sew my cervix closed, and have weekly sonograms to check cervical length. I take daily blood thinner injections in my belly, which is standard protocol for anyone with recurrent pregnancy losses, as well as weekly progesterone injections given by the doctor to prevent contractions. I am already on modified bed rest due to fluctuations in my cervix and on many other precautions. So far, I am holding strong with the cervix in a safe zone in terms of length. My latest measurement was 3.8 centimeters. I am currently in the riskiest portion of my pregnancy. If I can make it to 26 weeks, the risk will decrease significantly.

Truman is very excited about becoming a big brother. Once he learned about three weeks ago that he was getting a baby brother, he has been telling everyone, asking lots of questions, and seems very interested in all the details about the pregnancy and preparing for his baby brother.

As we navigate through the riskiest portions of this pregnancy and count down each day to reaching full term, I thought it was an appropriate time to begin regular blog updates again.