Wednesday, March 25, 2009

Colton's Homecoming







Sorry for the delay in getting a new blog update out to you guys. We've been busy settling in with our new family member and getting into a routine.

On Monday, March 23, 2009, Colton finally got to leave the NICU at Texas Woman's Hospital after 7 weeks and 3 days. He started out on January 31, 2009, at 3 lbs. 12 oz. and left on March 23, 2009 at about 7 1/2 lbs. He is still about 2 1/2 weeks shy of his original due date of April 12, 2009. So as challenging as it's been these past 7+ weeks, Colton has made tremendous progress.

We left the hospital after 6:00 on Monday. We had picked up Syd early from school that day as she wanted to accompany her baby brother home from the hospital. Getting out of school early wasn't all that bad either!

We all got to see many of the doctors and nurses that had been with Colton throughout his 7 week stay. Sydney got to say goodbye to the nurses who taught the Siblings Class each Wednesday. We also saw Dr. Gee, the neonatologist who was there when Colton was born. Dr. Hernandez, who was with us in the early days as we were dealing with the PDA not closing. And of course, Colton's heart and "brain" surgeon - Dr. Bloss - the pediatric surgeon who closed his PDA and did his circumcision. Wendy also mentioned that many of the nurses who had cared for Colton stopped by in the NICU as she was going over discharge procedures. I think what sets these doctors and nurses apart from many others is that their bedside manner matches their medical acumen. We thanked them for all they did for Colton but respectfully told them that we hope not to see them again for business purposes! :)

As we were walking out of the hospital, it still didn't feel real that we were finally going home with him. Wendy and I both had butterflies in our stomachs. Sydney was super excited and couldn't wait to get her little brother home. Houston traffic was surprisingly light on our trip home. That was my worst fear - getting hung up in rush hour traffic trying to get him home. Well, some schools are still on Spring Break in the Houston area so I think that definitely helped. Glad to say the ride home was uneventful.

Our neighbor Karen was nice enough to have dinner waiting on us when we got home. She had also bought balloons and decorated the house for his arrival. As we've said many times on this blog, we are truly blessed with wonderful families and outstanding friends. It's made all of this NICU and preemie experience a little more bearable having the support of everyone.
As I've said before, we look forward to the day that we can start to repay this kindness.
After getting settled in and coming down from our adrenaline rush, we went to work trying to create our new routine. Colton has to be fed at least 70 ml (a little over 2 ounces) at least 8 times a day - that's every 3 hours around the clock. Typical newborn feeds are about every 3-4 hours so it's not that unusual. However, Colton also requires the oxygen (nasal canula) during his feeds. He wears an apnea monitor 24x7 with an alarm that makes a car alarm in an enclosed parking garage sound like a whisper. I think the crystal in our china cabinet has all but shattered. Our poor dogs have been traumatized by the apnea monitor alarm as well, especially our black lab, Shadow. Shadow hates any type of electronic beep or alarm (think smoke alarm beeping when the battery is low). For the record, dogs can take Xanax and Shadow is getting good use out of her prescription. The apnea monitor is very sensitive which is a life saver in the event of a true apnea episode. We are hoping to continue only dealing with false alarms on the monitor as opposed to the real deal. Colton will continue to wear his apnea monitor until he is seen by a pediatric pulmonologist who can make the determination when it is no longer needed.

I'll have to say our learning curve for this new routine has really started to pick up. The first night, we worked out a few kinks in the routine and things are starting to go more smoothly. Colton is getting all of his required feeds and amounts which is very important. We also have a little Kangaroo pump, which is a device that helps deliver any remaining milk that he didn't take from his feed to his nasal gastric (NG) tube.

We had our first pediatric visit today as well. We went over Colton's discharge summary which is basically a huge summary report with all of Colton's history from birth to March 23, 2009. Colton and Sydney have the same pediatrician and she is conveniently located 5 minutes from the house (as opposed to Texas Woman's being 75 miles round trip). Dr. B. felt Colton looked really good today and felt he's made good progress based on his early history. Colton will be following up with a pediatric gastroenterologist and pediatric pulmonologist within the next month among other doctor visits. I think it's important to point out that while Colton is out of the NICU, he still has quite a few doctor visits in his future. He also has to overcome a few more challenges with taking all feeding amounts being one of the most important milestones.

We appreciate everyone understanding that we can't have visitors for Colton until after cold and flu season. Right now, late April/early May feels about right. In the meantime, enjoy these blog updates and celebrate with us as Colton has come home to be with his family in Tomball. All the best....Bret, Wendy, Sydney and Colton.

Monday, March 23, 2009

March 23 - Colton is coming home!!!


After 7 weeks and 3 days, Colton Todd Gibbs is finally coming home! We just spoke to the NICU and he passed the appropriate milestones to be released.

He will be coming home with oxygen for feeding, an apnea monitor and a few other things like an NG tube (for feedings and meds) and a pump to push any milk through his NG tube that he doesn't finish. He is still a couple of weeks away from his original due date. He will be popular at his pediatrician and other doctors. And there still is a lot of work ahead for him and his family.

However, we will have him home in Tomball. We will not have to do the 75 mile round trip daily to see him for a couple of hours. And we can work on getting him stronger for his meet and greet in a month or so.

Look for another blog update late tonight or early tomorrow with pictures and further updates.

Good doctors, good medicine, good care and prayers and Faith got him to where he is today. Thanks for your love and support and please keep him in your prayers to continue to grow stronger each day.....All the best....Love, Bret, Wendy, Sydney and Colton.

Friday, March 20, 2009

March 21 - Starbucks for Colton

Colton hanging out (and over!) the open crib in NICU on his 50th day of life. He is 7 weeks old. His due date remains 21 days away now. He is currently 7 lbs 6 oz. He is demonstrating longer and more significant periods of quiet alertness that are consistent with approaching term age.

These are the letters made by Aunt Katie for Colton. Colton can't wait to meet cousin Reed!


Beautiful curtains for Colton sewn by the very talented Karen! His nursery should be on MTV's "Cribs" show!

Colton has started his caffeine habit early. His doctors have him using caffeine to regulate his breathing. They have him up to a therapeutic level in his blood and they re-tested him on the OCRG again Friday. Results will not be available until sometime Monday and those results will determine if he is coming home yet or not. The nurse trained us on giving all his meds today.

Colton weighs in at 7 lbs 6 oz today. The neonatologist have upped his feeding amounts to 70 mL to keep him growing strong and to develop his brain. He finished 6 bottles yesterday, stumbled with one a bit with his 8:00 am feed with a nurse and finished his 2:00 feed with Mom. He gets NG feedings at 11:00 am and pm to help conserve energy and maintain growth. They will look into upping him to 8 bottles if he continues to do well with 6 bottles per day and gain weight. Maybe he can get up to 8 before Monday and get rid of that NG tube! The caffeine has helped him eat better by bottle and should continue to do so.

Everything is pretty much ready at home for Colton's arrival. His name is hung in letters made by my sister-in-law Katie McKinney and they look amazing! My friend Karen made some AWESOME curtains and table cover for his room! His room is looking fabulous! We have a sweet little outfit ready for him to wear home. Now we just need him here!

More updates as we have them. The results of the OCRG should be in sometime Monday and that will dictate what happens next. Until then, he will be working on eating bottles, growing and developing that little brain.

Wendy, Bret, Sydney and Colton-pass-the-Starbucks Gibbs














Wednesday, March 18, 2009

A Few More Days In The NICU

Colton has had a set back in his homecoming plans. Colton did not pass his OCRG (oxycardiorespiragraph). That is a study of his heart rate, breathing rate and oxygen saturation over a period of 6 hours. He had episodes of increased breathing rate and oxygen desaturations that need to be addressed. He will be placed on caffeine to regulate his breathing, which is very common for premature infants. Once they have a therapeutic dose of caffeine on board, they will repeat his OCRG and that will determine if and when he can come home. If all goes well, he should come home late Monday or on Tuesday. It takes a few days to regulate the dose to what he needs and then he must repeat the OCRG study and have the pulmonologist interpret the results..



Otherwise, he continues to do very well. He is eating bottles better and the neonatologist thinks he may be able to complete his bottles once his breathing issues are sorted. Then he won't have to come home with an NG tube. He is up to 60 mL, or 2 ounces, at each feeding that he must consume by mouth or by NG tube. He often starts out great and then falls asleep, unable to finish. He continues to do well maintaining his temperature in the open crib. He is weighing 7 lbs 2.5 oz.



Hopefully he will be home with us early next week without further delay.



Wendy

Colton's homecoming delayed :(

More details soon - but it will at least be Monday or later.

Monday, March 16, 2009

BREAKING NEWS - Colton coming home on Thursday, March 19!

Just got off the phone with Wendy. Doctors informed us that Colton can come home on Thursday, March 19! This allows us to have him home one night then follow up with the pediatrician on Friday. More details later but thought I would post this info sooner rather than later! - Bret

Sunday, March 15, 2009

March 15 - Open Crib Day


Colton moved to the open crib today! He is now working to prove that he can maintain his own body temperature without the help of the isolette. He moved into the new crib at 2:45 today. He also had orders written on his chart for Mom and Dad to begin to learn to use and place the NG tube (his nasogastric feeding tube). On Monday, the social worker will begin to arrange for all the equipment he needs to be discharged home. Mom and Dad will also learn his medications and how to administer them.

Colton has come a long way from 3 lbs 12 oz weighing in last night at 6 lbs 15 oz just under the 7 lb mark. While he may appear to be an average sized full term baby, he is very far developmentally from a full termer. Colton has done excellent in the weight gain department on his diet of breast milk and calorie fortifier via the tube. The neonatologist have strict guidelines based on age and weight for nutrition for the preemies. Even if they do better than expected in the weight gain department, as Colton has done, that doesn't mean they even begin to compare to a full termer. Colton should have spent the last 6 weeks (plus a couple more!) growing and developing in utero. To be able to grow and develop outside, means he has had to sacrifice development in order to learn to breath, digest food and survive on the outside. All preemies seem to struggle in some areas and work like a champ in others. Colton seems to have the digest food and grow part down pat. Actually eating the food by bottle and remembering to breath properly are harder for him. If it was easy to grow the babies on the outside in the isolette, I imagine they would let everyone get out of the 3rd trimester. I have heard it can be trying...I wouldn't know! I have 2 children and I have only been pregnant a little over 13 months total!

As a pediatric physical therapist, I am acutely aware of what is normal development for a premature infant. When Colton is 6 months old, doctors and therapists will expect him to behave as a 3.5 month old infant due to being born 2.5 months early. As with a full term infant, he will excel in some areas and lag a bit in others as he works to develop. Infants born before 32 weeks gestation often lag behind even more due to additional complications they may have. Most preemies catch up with their full term peers by 2-3 years of age. Basically, he is ahead of the curve by getting to come home before his due date! Even if it is with some equipment.

Sydney took off and grew like a weed after we brought her home from the NICU 8 years ago. Since she was 2 years old, she has been 90 percentile for height after starting below the 5th when she was born (Sydney was born at 32 weeks and 3 days gestation). One of the most frustrating things for us was people who assumed she was older and therefore expected her to act the age they thought she was based on her height. We were acutely aware then based on veiled comments or body language how people thought she was not acting her age. It is unfair to expect a 3 year old to have the skills of a 4 year old. The same holds true for Colton. It's tempting to think he is ready to leave the NICU and will be "caught up" or "normal" strictly based on his weight and size. Unfortunately, our society expects certain behavior and characteristics strictly based on size. Make no mistake about it, Colton is doing very well, but he is still a fragile premature infant. I am very thankful he is not had a failure to thrive, which can be very common diagnosis for preemies who do not gain weight well.

This week will be a blur of training and preparation to bring Colton home. The target date remains Friday for his homecoming. I plan to send out birth announcements after we get Colton home, settled, and get the NG tube and stickers off his face so he can have a beautiful picture without medical equipment to accompany his announcement. That is probably still a couple of weeks off.

In addition, RSV season runs through the end of April, so Colton will have to put off company until the end of April. I know everyone is very anxious to see my little man in person; but we will have to wait for his debut on the red carpet. Thank you for your understanding. RSV is a simple cold in adults and older, healthy children. RSV can be deadly for premature infants. This is something both the doctors and the nurses are crystal clear about - your child can die if they are exposed to RSV in the coming weeks. Short of Jesus Christ knocking on the door to visit, we may respectfully ask everyone else to wait until cold/flu/RSV season is over. Next RSV season, Colton will receive special RSV vaccinations to prevent infection. His lungs remain premature and at high risk of damage from illness. We just want to be clear that we are not trying to be rude but have to put Colton's health first. Trust us - we want to show him off and will do so when the danger of the season is over!

Thanks for your support and we look forward to everyone meeting our little man later this Spring. We will continue to update with pictures and reports. Look for a huge spread on homecoming day!

Wendy, Bret, Sydney and Colton

Saturday, March 14, 2009

March 14 - 6 weeks today


Well, it's been 6 weeks since Colton joined us in this world. He is still almost 4 weeks from his original due date. The little guy ain't so little anymore. He is less than 1 ounce from the 7lbs. mark!

You might have noticed more infrequent updates. We haven't had a ton of significant news day-to-day. However, that has changed today.

Wendy spoke to the neonatologist today about how Colton seems stuck at the 6 bottles per day (remember 8 bottles is the target) and the fact that he is still gaining weight like a champ. Given Wendy's background in working with young children and the fact that, medically speaking, Colton appears to be doing well, it looks like we will target next Friday, March 20 as the day we bring him home! Of course Colton has to keep on track like he is now but we are optimistic that next weekend is the weekend we finally get him home.

Colton will still be a preemie when we get him home. He will likely come home on oxygen for his feeds. He will have an apnea monitor for when he sleeps. He will also have his NG tube (tube that you currently see in the pics going through his nostril and into his belly) to make sure he is getting the proper amount of milk and likely administer his Zantac for his reflux. We will get a crash course this week on all of this stuff at the NICU. We just took infant CPR tonight (good times on a Saturday night) so we are hopeful to never need that training in action. However, this is all stuff we believe we can handle and more importantly, the great staff at Texas Woman's believes we can handle.

We will spend most of this coming week putting the finishing touches on everything he needs before coming home. As tough as these 6 weeks have been on us, the real work begins when we get him home. I'm sure our pediatrician will get to know him very well over the next year! We are still in the cold/flu/RSV season. For those who don't know what RSV is, it's a potentially deadly infection of the lungs and breathing passages. Preemies especially are susceptible to RSV and that's why we'll have to be vigilant about limiting his exposure to others over the next month or so. RSV season generally runs from September - April.

Stay tuned for more updates on Colton and all the best to you and your family....Love, Bret, Wendy, Sydney and Colton

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Wednesday, March 11, 2009

Homecoming Planning


Dad is doing a pretty good job of helping me with my bottle!


Bret getting ready to bottle feed Colton

The neonatologist called me to discuss Colton going home! The neonatologist on rotation this week said that if all continues as well as things are going we can expect Colton to be home by the end of next week! She wants Bret and I to take CPR this weekend, they will set up apnea monitor training for us and they will arrange for him to have an apnea monitor and O2 at home. Just before he comes home, he will do a sleep study that will determine if he needs O2 at home for his meals or not but it is easier to set it up and cancel it if we don't need it rather then scramble at the last minute. Currently, he has oxygen at each meal both the bottle feeds and the tube feedings. Eating and breathing at the same time is still rough for him.


Colton drank 5 bottles yesterday and he is to do 5 again today so that he can bump up to 6 tomorrow. His Dad even fed him a bottle for the first time yesterday! He continues to steadily gain weight and now weighs in at 6 lbs 8 oz. He officially weighs 2 ounces more than his sister did when we brought her home! However, we did bring her home just before 35 weeks gestation and Colton is now over 35 weeks gestational age. He should be a little over 7 lbs by next Friday, assuming he keeps on gaining as well as he has been doing.

We are very cautiously optimistic right now, as we are fully aware any set backs will change the game plan. We have several last minute preparations to make before we bring the little man home so we will focus on getting those knocked out.


Thanks again for all your love and support!


Wendy, Bret, Sydney and Colton






Monday, March 9, 2009

March 9 Back-To-Back and the "H" word


Today was a really good day for Colton! He went up to 5 bottle feeds after scarfing down 4 yesterday in his alloted time. The tricky part is back-to-back bottles. The neonatologist also wanted Colton to try to do some breastfeeding as well today. She also said she would push 6 bottles tomorrow provided he finished 5 today. The nurse gave Colton a bottle at 11:00 am. I was particularly bummed out because I usually try to feed him at 11:00 but I was trapped at the doctors office because the doctor was running very late.

Upon my arrival at 12:30, the neonatologist was just getting to Colton. She gave me the good news and told the nurses to have the lactation consultant come for the 2:00 feeding. She also said his weight was good, 6 lbs 3.9 oz and he was done with the lasix for now. While I was excited he was going to try breastfeeding, I was worried about him doing back to back bottles sometime today and didn't want him tiring out. I held him chest to chest while he slept and we waited for it to be 2:00. Colton did very well according to the lactation consultant. He got to try for 10 minutes, but his weight in grams did not change, meaning he didn't even really get much. The nurse said to go ahead and try to bottle feed him, she could push what he didn't eat by his tube. I started feeding him and he ate like a champ. He was a bit slow at the end, which is his usual style, but he finished it in time. He ate his back to back bottles! Our fingers are crossed that he will finish the rest of his bottles today and not try to sleep through a meal after getting the hardest part over.

His pediatrician came in for a visit as he was finishing up his bottle. She said things are looking very good and she actually mentioned the "H" word! Assuming all goes well and he doesn't have any surprises it is not unrealistic to think he could come home by the end of next week! She is always way more optimistic than the neonatologist; they won't even discuss the "H" word except in hushed voices as if the very mention might set the babies back for weeks! His pediatrician was discussing with me that he will very likely come home with oxygen for when he is eating, an apnea monitor, and medicine for reflux. He will have some additional test to determine if the oxygen and apnea monitor are necessary, but the general consensus of the doctors is that he is going to be sporting those items. His task to come home are:

1. Eat 8 bottles per day and get rid of his NG tube.
2. Move to the open crib and maintain body temperature without help. (Must complete #1
before he can move to the open crib)
3. Do 1 and 2 while still gaining weight at a rate of .5 to 1 oz per day on average.

As the pediatrician and neonatologist point out, Colton is in charge. On any given day he can decide to "go preemie" and not eat, lose weight, or demonstrate he can't hold his temperature.

Keeping cheering Colton on, he is past the half way mark and the end may be coming into site for the NICU! For those of you keeping count, this was day 38 of life in the NICU.

And in other good news, the running late doctor is very pleased with the healing and progress of me! We are continuing with the same plan of care and he will check it out again next week.

Colton has a new friend to meet when he gets home. Sarah is a lovely young lady also born at 30 weeks gestation in January to parents that live around the corner from us. Sarah arrived home from the NICU in Tomball today. Welcome Home Sarah!!!

Thanks again to everyone for their love and support! Looking forward to celebrating with everyone in the upcoming weeks!

Wendy, Bret, Sydney and Colton "I can eat back to back bottles" Gibbs

Saturday, March 7, 2009

March 7 - If Projectile Pooping Was An Olympic Sport...

Preparing for the world record
Colton would win a gold medal! Let's start off on a light note about Colton today.

With the amount of food Colton's getting, let's just say "production" is up. "Production" is to be expected in these types of situations. However, little kids don't come with pressure valves indicating pressure build up is high and release is imminent. This ain't our first rodeo so we know little kids can be weapons of mass production. We are also aware that little boys sometimes find it funny to have target practice when their diaper is off. What Wendy and I weren't prepared for was a world record being set in projectile poop at the Level II NICU today.

So as we are changing his diaper and tidying up his baby condo (a.k.a. isolette), Colton gives an indication that he's not quite finished with his business. No big deal, he's actually done this a couple of times. Just hold the diaper in place and let him finish his business. They weigh the diapers to track output of production so it's good if you can get everything in one diaper. Well, as Wendy is preparing for the eventual output, I'm standing behind and to the side of her with wipes in hand. It's kinda like a pit crew except instead of changing tires and filling up gas, we are cleaning and diapering. Funny thing is there was something full of gas today but it wasn't our car.

The next thing I remember, I'm looking down at my gown filled with a substance that was not there 2 seconds prior. Wendy's hand color changed and the isolette looked like a modern artist had gone wild with the paint. The "artist" also forgot the drop cloth because paint was on the carpet as well. We sat there for a couple of seconds in total disbelief at what just happened. You guessed it. Colton officially earned his man card today by building up enough gas to set the new world record in projectile poop.

I tend to exaggerate on some stories but let me tell you, I am not exaggerating on this. I would be lying to you if I told you I had seen anything close to this before. I could eat beans and jalapenos for a week and pump my colon full of propane and I don't think I could come close to replicating what my son did today!

Folks, I'm not kidding when I said I was 2.5-3 ft. away from his isolette. If there was a bullseye dead center on my gown, he would have nailed it perfectly. How Colton managed to reach the top of the isolette is something that will baffle us for years to come. Newton would be scratching his head because the laws of gravity were completely disproven today.

Well if this had been at home, we might not have found it as funny. The nurses in the NICU got a good laugh and Wendy I couldn't control our laughter after we got over the initial shock. Sydney probably got the biggest laugh today because she nearly passed out with laughter when we told her about it when we got home. Colton is already scoring points with his big sister for literally telling their parents they are full of crap.

I was tempted to get a pic of Wendy and myself but I thought that wouldn't be the best picture for the internet. I did take a picture of the redecorating that Colton did to his baby condo but thought I would spare you the visual image. Colton was oblivious to the whole thing because he fell fast asleep after all that hard work. Needless to say, we will be a bit more prepared in case Colton wants to try a little more target practice in the future!
OK, now that we got past that story, let's move on to an update on Colton. He is 35 weeks gestational age today and weighs 6lbs. 5oz. today. We believe some of that weight is residual fluid leftover from when he had his PDA closed. As a result, his neonatologist is giving him a couple of doses of lasix to rid him of any remaining excess fluid. This will likely result in a few ounces weight loss so don't be suprised if you see his weight down in the next couple of days. He is up to 4 bottles now and is basically on room air when he's not feeding. During feeds, he is on oxygen (nasal cannula) to help him maintain his blood oxygen saturation.

Next big step is to move to 5 bottles in one day. This will be the first time that he has "back-to-back" bottles in a 3 hour period. He is fed every 3 hours around the clock. Typically, things slow down at bottle number 5 due to the stress of those two bottle feeds in a row. His isolette temperature is at the lowest setting now. Next step is to move to an open crib. 8 bottles in one day and being in an open crib are 2 of the last remaining major requirements before getting discharged. Again, hard to predict these things but we are hopeful that Colton won't see the new Level II NICU in the new building come April.

Wendy should get to try some "non-nutrative feedings" (breastfeeding just after pumping milk) with Colton this week. This gets him used to latching on in hopes that he will breastfeed instead of Wendy having to use the breast pump exclusively. Speaking of Wendy, she is feeling better now that she has completed her last course of antibiotics.

Well, that's enough excitement for one day. Thanks again for everyone's prayers and support over these last 5 weeks. Our family has persevered thanks to our strength, Faith and the support of our family and friends. Colton has a few more hurdles to go but we are starting to see light at the end of this long and dark tunnel. Here's looking to brighter days....All the best...Bret, Wendy, Sydney and Colton.

Friday, March 6, 2009

Friday March 6: 3 Bottles Down!


Colton did a great job yesterday and ate 3 bottles with the nurses and OT's. He is working on doing the same today. I got to feed him part of his bottle at 11:00 with OT and he did a nice job of eating some for Mom!

He is continuing to grow well and is right on target for his gestational age. His gestational age will be 35 weeks tomorrow as he turns 5 weeks old. But as his neonatologist pointed out, he is actually ahead of the curve as he is supposed to be floating in amniotic fluid with umbilical cord support rather than eating by mouth, breathing and maintaining his body temperature!

He is working on weaning down to room air today between feedings but will remain on O2 for his feedings.

If all goes well for him over the next day or so, he will add in a 4th bottle. It is that jump to the 5th bottle coming up next week that is a huge milestone to achieve and can hang the preemies up for a few days. Keep your fingers crossed that Colton will conquer his bottles like a champ and keep moving forward at a good steady rate.

Wednesday, March 4, 2009

March 4 - And Then There Was 3?


Wendy and I visited Colton today for his 11:00 a.m. feeding. Wendy did most of the feeding today with a little help from the OT at the end. Colton gets his 2nd bottle tonight at 11:00 p.m. The neonatologist feels that if he does well at his 11:00 p.m. feeding tonight, he will move up to 3 bottles tomorrow! We are keeping our fingers crossed that he does well tonight.

His weight was 5lbs 14.5oz as of this morning. When I spoke to his nurse this evening, he is now at 5lbs 15.9oz. That's essentially .1oz away from 6lbs. It's hard to say exactly but he may be over the 7lb. mark when he gets to come home in a few weeks. The tough part in all this is there really is no way to predict when he comes home exactly. It's all up to him and how he does on his bottle feeds. There are some other milestones/tests he must pass as well and we'll get to those as he moves closer to the coming home date.

Texas Woman's is undergoing a huge expansion right now. They have opened up their new wing and are currently remodeling the "old" section (where we are right now). In Colton's "Pod" (section of the NICU), there are about 8 babies right now. Well, that will be changing over the weekend. The Level III NICU (where Colton spent the first couple of weeks of his life) will be remodeled soon, so those babies are moving to a section of the Level II NICU. Long story short, we will be busting at the seams in our pods with babies soon! As if the NICU wasn't a stress simulator before, it will make Houston rush hour traffic a walk in the park. Level II NICU is supposed to move the new part of the building in April. Our hope is that Colton will never get to see that new real estate. :)

Wendy continues to improve and we keep chugging along with day-to-day activities. However, we always keep Colton close in our thoughts when we aren't spending time with him at the hospital. Looking forward to the day we bring him home, get past cold, flu and RSV season, and get to show off what we think is the cutest little guy in the world. All the best to you and your family....Bret, Wendy, Sydney and Colton.

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Tuesday, March 3, 2009

March 3 Two Bottles of Milk on the Agenda


Colton is moving upwards with his bottles. He will try two bottles today. He finished his first bottle today at 11:00 am in 16 minutes with his OT and his doctors decided he should try a second tonight at 11:00 pm with the nurses. He is receiving the same amount of milk, 49 mL, but they are adding 4 packs of extra calories to his feedings to make sure he is getting enough calories. He weighed 5 lbs 11.4 oz today, up .1 oz from yesterday. His stomach is not able to take any more milk at this time with his reflux. If he does well with two bottles, they will add in a third and so on. The Neonatologist told me today that many babies get stuck and have a bit of a set back when the 5th bottle is added in because then they have to do back to back bottle feeds which the babies find very stressful. He is currently using the Dr. Brown's bottle system which the OT thinks works very well for him at this time. Bret and I will get the opportunity to try to bottle feed him in the very near future. He remains classified as "difficult" for bottle feedings by the OT but she assures us that he is much safer now. His neonatologist said he can try some non-nutritive breastfeeding beginning next week!

Colton also had a visit with the Opthamologist this am. He passed this screen for ROP (retinopathy of prematurity) and will follow up in 2 weeks as all his vessels have not matured at this time.

The hospital also called today to set up a car seat check for Colton, which is one of their steps for discharge planning! This is the first step of discharge planning we have seen! It doesn't mean discharge is coming very soon, but it is a step in the right direction.

Today was the first day I drove down alone to see Colton. The drive went as smoothly as it can in Houston. Our round trip mileage is around 72 miles. The trip down can take anywhere from 45 minutes to over an hour depending on traffic and the same for the return. The bad news is the Houston Livestock Show and Rodeo begins tonight. This will significantly increase traffic in the area of Texas Women's Hospital and may potentially block one of our routes that we use. I think the rodeo lasts for 3 weeks. It will be a race to see if Colton gets home first or the rodeo ends.

In Colton's picture today, he is showing off his little "foot blanket" made for him by his big sister, Sydney! Isn't that sweet!

Thanks again to everyone for all their support. We have definitely needed it this past month.

Check back tomorrow to see if the little man ate his second bottle in a timely fashion!

Wendy, Bret, Sydney and Colton

Monday, March 2, 2009

March 2, 2009 First Bottle Down

Pouty Face!
Colton had a good Monday. Everything thing came together for Colton during his 11:00 am by mouth bottle feed with OT today. He demonstrated a coordinated suck-swallow-breath with moderate force with the suck and finished his 49 mL in 19 minutes with at least 3-4 minutes of rest and burping. He was eating at the recommended rate of 3-5 mL per minute! He was very awake and at least moderately interested in the task at hand. Decreased strider was heard during the feeding indicating improved functional swallowing. He was given O2 at 100% on 1/8 L during the feed. He continues to be on a reduced percentage of O2 when not feeding due to periods of apnea and bradycardia. His OT warned us that he might not finish his bottle tomorrow and that it might take several days before he consistently finishes his prescribed amount in 20 minutes and moves up to try 2 bottles a day.


Colton weighed in today at 5 lbs 11.3 oz. The nurses report he is showing increased periods of alertness and wakefulness. Good signs that he is ready to begin to learning to eat and to interact with his environment.


Some people have asked me about more info on the NICU and prematurity. The March of Dimes has good info:http://www.marchofdimes.com/ as does this website: http://www.prematurity.org/baby/index.html.


Today was Colton's 31st day of life. His gestational age is 34 weeks 3/7 days. He will be 35 weeks on Saturday, still 5 weeks from his due date. We still have a ways to go until we get him home and settled. We have to take each day one at a time. The past 31 days have been the hardest of my life by far; however, the love and support of family and friends have been very helpful to me and my family. Some of you have reached out to make me laugh over the past week or so and I appreciate those laughs more than you know! Keep them coming, please!


Lastly, I am showing good improvement per Dr. Hammill's report today at his office. I am on the mend and doing well.


We will let you know how my little man is doing again tomorrow.


Wendy

Sunday, March 1, 2009

March 1 - Month 2 Begins.....


Wendy, Sydney and I visited Colton today at the hospital. Sundays and Wednesdays are the only days that Sydney gets to come into the NICU to visit. There is supposedly a 20 minute time limit for siblings to vist and poor Sydney starts worrying about the time the minute she walks in the door! However, the nurses are cool about the time as long as the kids are on their best behavior. Sydney got her "baby brother time" today so she was happy.


It's strange sometimes walking with Sydney into the same NICU where she spent the first 12 days of her life. I can remember how scary those times were for Wendy and I. However, Sydney is now one of the tallest girls in her class. I have to brag a little and also mention that she is also one of the brightest. She also is a very loving child and Wendy and I couldn't be more proud of her. She is a visible reminder of hope for us that Colton one day will be out of this NICU and will, God willing, be a happy and healthy boy.

If you have never been inside a NICU (and I hope most of you reading this never have to), it can be intimidating. Little micro preemies on ventilators, alarms going off warning of low heart rates, desaturation, etc., and a stress level in the air that you can almost cut with a knife. Admittedly, Level II NICU is not as intense as Level III. However, it's still a far cry from a normal nursery. I feel bad for Wendy because she never got the experience of a normal delivery where family and friends come see her and the baby in her room. However, I plan to make Colton's homecoming a very special day for all of us. A homecoming that we hope will come sometime this month.

Colton continues his slow progress on his feed. He is still on oxygen (nasal cannula) to assist with his bottle feeds and alleviate the desaturation events that are common with acid reflux. He was doing great up until the 8:00 feed last night. He desaturated twice and had an apnea episode associated with one of those desaturations. They had reduced his oxygen from 70% to 30% during the day yesterday. Between the bottle feeds and reduced oxygen, it was just a bit too much for him. He's now back on 100% oxygen and will likely be until Monday. We are hoping it's just a minor setback but illustrates that we will have a ways to go before we get him home.



He now weighs over 5lbs. 10oz. so his weight gain has been a positive sign for the last few weeks. His neonatologist is happy with the positive weight gain. However, the ability to take bottles without wearing down too much (desaturation) is key to knocking down the next milestone.

The daily trips are starting to add up not only in mileage (over 2,500 miles driven since Jan. 31 without ever leaving Houston) but in wearing us down. However, he's in one of the best NICUs in the country so the daily drive is a small price to pay for the level of care he is receiving at Texas Woman's. It's nice having doctors who have "been there - done that" when it comes to dealing with preemie issues. It makes things better to have doctors who remember why they went into medicine in the first place - care of people. We've truly been blessed with some good doctors and nurses whose bedside manner matches their medical experience.

We'll continue to update everyone via this blog. Stay tuned for more updates, including pictures and videos. All the best to you and your family....Love, Bret, Wendy, Sydney and Colton.