Almost 15 months!

Carter will be 15 months old on 12/12…or 1 year adjusted on Dec. 30. His adjusted age is 11 months, that is, his age had he been born on his due date. We base all milestones off his adjusted age. Carter is doing AWESOME!!!

A few updates:

-Carter is a great sleeper. Sleeps 7 pm-6:30am, napping twice for about 1-2 hours each nap. Sleeping is much better for him now that he can handle larger quantities of food and his reflux is under control.

-Still on a few meds…nebulizer treatments at night (try getting an 11 month old to sit still to have stuff blown in his face, yeah, right!), and lots of reflux meds. Other than that…no diuretics or any other meds!! Yay!

-Carter continues to work really hard with speech (when he’s not screaming at the door to go home…). He can drink out of a straw sippy cup and is practicing biting. His speech therapist is helping to strengthen his low tongue muscle tone and to help with some texture issues he has. Apparently I gagged like crazy as a child and so does Carter…however, I never quite went the projectile vomit route that Carter chooses to take. Interestingly enough, Carter is vomiting sweet potatoes but was able to manage a few bites of cheesecake…hmmm… oh and he babbles tons. Says mama, dada, papa, shrieks, screams, squeals, wails, screams, shrieks, screams, did I say screams???

-Food wise, he still takes pureed baby food and formula bottles. We’ve had some issues with reflux but usually just adjust meds and he figures it out. Not time for us to stop reflux meds just yet. We tried and Carter sleeps horribly and gives us a lot of trouble when eating.

-Physical therapy wise…he continues to go to PT every THREE WEEKS now! Wahoo!!! The major concern was Carter’s low muscle tone throughout. When babies are born as early as Carter they are on their tummies and not curled up like they would be in the womb. This greatly affects muscle development. However, Carter is a champ!! He crawls around, bends down to look if a toy fell under the cabinet, easily goes from sitting to standing, standing to sitting, crawls over things and as of today…walks while pushing something!!!! What a show off!

-We just switched Carter out of his infant carrier to a rear facing convertible car seat. Finally!!!! That infant carrier was getting heavy! We had to switch Claire out of it at 6 months old…Carter at 15 months! I hope one day Carter is able to compete with Claire. As of now she just rules the roost, as all big sisters should.

-Carter has quite the personality. He is a feisty little thing and so different from Claire. He knows what he wants and he insists that what he wants happens in that exact second he asks for it. We frequently have lots of tears and tantrums. Yes, tantrums. Squeezing fists, screaming, red-faced, and lots of tears. I think he is having an age-identity crisis. He’s not sure whether he’s an 11-month old or a 15-month old.

-Things are hectic around here at times, as you might imagine with a 1 and 2 year old. Carter can rarely leave the house because of RSV season. RSV is a respiratory virus that causes an everyday type of cold for you or me. However, babies born before 28 weeks are not necessarily born with all the antibodies that even a 28-weeker would be born with to fight off this virus. Also, since Carter has chronic lung disease (lung injury from prolonged use of oxygen) he is at a high-risk for getting RSV. Carter qualified to get monthly shots, November-April, called synagis. This shot helps prevent RSV and also lessen the symptoms if he were to get it. Most kids by age 2 will have contracted RSV, you just might not know it. If you have RSV, you wouldn’t see symptoms until a few days after getting it. Not only that, the virus can live on hair and clothes. Because of all these reasons, along with doctor recommendations, we choose to not bring Carter to places where there are going to be a lot of people. We would feel so guilty if he was hospitalized or really sick because of our carelessness.

Other than that, Carter is growing to be a happy, healthy, wonderful little guy. We are so blessed to be his parents. If you followed our blog during Carter’s journey, we’d love to get your Christmas card or to send you ours!

Our address is:

3183 Davey Court

Aurora, IL 60503

While our NICU struggles and preemie fears have really ended, it hasn’t ended for so many other families. As the holidays quickly approach us, please keep families with babies in the NICU (specifically for baby Arick who was just transferred from Edwards to Childrens), as well as babies out of the NICU that continue to fight for their lives, in your thoughts and prayers this holiday season.

We hope you have a wonderful Christmas and a happy & healthy 2014!

The Sauls

Claire, 2 years old

Our family

Carter at his first birthday party, September 1

Coming up on 1 year!

It’s hard to believe that September 12 Carter will be 1 year old! Time sure does fly…

Carter has made incredible progress and every time I think about it, it brings tears to my eyes! Although he is almost 12 months, he will be 8 months adjusted on August 30. We look at him mostly like he’s an 8 month old. Here are his highlights:

-Carter is completely off of Neocate (the formula with the proteins broken down) and only on Similac Advance (same formula Claire was on)! Hooray! 

-Carter eats 3-4 jars of baby food a day. We can start trying regular milk once he turns one. We add a little Canola Oil to his lunch to keep the fat up in his diet since the fruits/veggies don’t have any fat and low calories. 

-Carter is about 17 pounds and in 9 month clothes. Not sure of his length.

-Carter’s speech development is right where it should be. He laughs hysterically, especially at Claire, and responds appropriately to things he does/doesn’t like. Cries and yells at Claire when she takes toys away from him. : ) 

-Carter’s physical development is about that of an 8 month old! He sits on his own, rotates around to get toys, lays on his tummy and ends up in the middle of the kitchen. He gets up on all fours and rocks back and forth. His physical therapist said he should be crawling in the next two weeks. I of course bawled tears of happiness when they told me that! 

-Eating is still hot & cold for Carter…some weeks are better than others. We just continue to watch his weight gain and as long as that continues to increase, we’ll take it! He is currently at the 5th percentile on the full term baby growth chart – no more preemie chart!!! Wahoo!! When he came home from the NICU he was in the 3rd percentile on the preemie growth chart. Boy has he grown!

-Carter is eligible to receive the monthly shots for RSV from October to April…so once again, we’ll be avoiding large crowds and taking him out in public often. Though his lung development has improved, if he got RSV it could be very dangerous for him. We have a nanny come to our house this school year to lower Carter’s risk of getting sick. Her name is Christina and she brings her daughter with her who is Claire’s age. We love her and got so lucky to find someone like her. 

Anyway, Carter is doing great and we couldn’t be more proud of him! I will post some pictures after his 1st birthday party (this Sunday). 

Overdue Update!

It has been just about 2 months since we’ve given an update. So here it goes! Carter is 24 inches long now and almost 12 pounds. He will be 8 months old on May 12, 4 months adjusted. He is very verbal, cooing and making lots of noises. He loves to laugh and is very, very ticklish. Still sleeping through the night and an all-around good baby!! We just love him so much!

Carter is still seeing the pulmonologist monthly. We are slowly weaning him off his diuretics. We’ve stopped his Diural & Albuterol altogether. He seems to be breathing fine and we don’t really notice much of a difference. Yay!! He had his last synagis shot and we’re hoping we are in the clear from sickness! We have slowly started to take him out and about.

As for GI…Carter still sees his GI doc monthly. I was concerned about his weight gain when I realized he had only gained 4 oz in a matter of 3 weeks. I was frustrated that the pediatrician didn’t notice this and that early intervention took almost 2 months to locate a nutritionist for us. So I’ve decided to no longer go through early intervention & go solely through the pediatrician. Last Saturday at the pulmonologist Carter had gained a pound in the last month and so I stopped worrying about the weight gain. However, at his GI appointment yesterday the doctor was not so pleased. He was not happy with his weight gain or that there is still no substance when Carter goes to the bathroom. : / I went into the appointment feeling great that he had gained a pound and that he’s finally tolerating a little dairy free breast milk in each bottle and left in tears!

Dr. Nagpal suggested Carter get a g-tube. I think he saw my frustration as I’m in tears and can barely speak in the appointment (meanwhile Claire is at this little table eating crayons and peeling the wrappers off!). He first referred us to a pediatric surgeon who does g-tubes and wants us to see her before we come back to him in 2 weeks. He also wants us to go back to speech to make sure it isn’t a suck/swallow issue since he was discharged from speech 3 months ago. He said when we come back in 2 weeks if Carter does not have good weight gain he is going to strongly recommend he have a g-tube.

Steve & I feel very strongly against his recommendation. To try and make me feel better he said Carter would be fed through the tube during the night and bottle fed during the day so he didn’t lose his suck/swallow coordination. I am going to call our health group tomorrow to ask for a referral for a second opinion.

I am dreading the day they tell us to try solids with Carter! Anyway, we feel like Carter has made huge strides and is doing so well. We’ll see what comes of the GI visit in the next few weeks. In the meantime, please say prayers for NO G-TUBE!!! Thanks!

Easter

Happy baby!

6 months old!

Today Carter is 6 months old (10 weeks adjusted) so I thought I would post a quick update on his progress. He now weighs a whopping 10 lbs. 6 oz.!! He has been discharged from speech for now and continues physical therapy every other week. We are working at home and at PT with Carter to help him better cross his midline. He should be able to do this a little better by 3 months adjusted, so he has a few more weeks before his physical therapist says we should be concerned. If you picture a line drawn down the middle of your body, this is the midline. You take your left hand and cross over your midline to perform a task on the right side of your body and vice-versa. Carter keeps his hands out to the side, however, he is starting to bring them in more to suck on his hands when he is hungry. Issues with crossing the midline can effect reading, writing, and speaking abilities. So for this reason, we just continue to work with him to reach this milestone in a few weeks. As I think about him doing this more – he has been grabbing my finger for short periods of time when feeding, therefore, pulling his arm in!

Carter’s physical therapy evaluation put him just below the average mark – yay!! He is slowly falling behind developmentally when compared to other babies at his adjusted age (9 weeks). We are fully expecting developmental delays and are told he should catch up by age 3.

Carter is not quite ready to kick his meds yet! Still on the Diural and Aldactone (diuretics) to keep fluid off his lungs as well as 2 breathing treatments with the nebulizer 2 times a day. I feel as though the nebulizer really improves his breathing and I can tell when it is about time for a treatment without looking at the clock.

Steve, Claire, & I were all sick over the last two weeks and due to overly obsessive hand washing, house cleaning, and laundry – Carter didn’t get it (at least I’d like to think this is why he didn’t get it – especially after my hands were cracked and red from washing them so much!)!!! YAY!!!

For my NICU friends – if you were reading my post on the Edward NICU page about EI verse Follow-up clinic, I’ve decided to go with Early Intervention. Carter will automatically qualify for a birth weight under 1,000 grams and then they will determine what therapies he should receive after they do their evaluation (he’ll be evaluated in the next 2 weeks – hopefully). As of now he receives physical therapy through Edward and I really like his therapist so I can’t see us changing. Except…the physical therapists from EI do come to the house… Early Intervention is covered by the state and you just have to pay a sliding fee per month (for any and all services) depending on income. Because I have HMO insurance – I am not too concerned about getting referrals to specialists in my HMO group, and they would be fully covered by my insurance.

Other than the previous updates…Carter is holding his head up, following objects from side to side, cooing, smiling at us, and sleeping through the night

Look at his smile!

!!

March of Dimes Walk

Carter has been home over a month and he continues to do well! He is 8.5 pounds now and stretching the limit on newborn size! He has been discharged from speech and physical therapy for now – we are checking in with them this week for a quick appointment to make sure things are going well, but after that we are done! Carter is taking 3 – 31/2 ounces a feeding and eats constantly!! Our GI doc was impressed with his weight gain but not so impressed with the fact he’s still having some bowel issues. He switched Carter from Neocate (a formula where all the proteins are really broken down) to Alimentum Ready to Feed (corn free) for a possible corn allergy. After a week that proved to not be a good route for us as Carter has been very uncomfortable and refluxing a lot more.  When I would squeeze his stomach to see if it was soft he would shriek and cry out. So last night Steve & I decided to put him back on Neocate. I called the GI doc today but he’s out of town. The nurse said it was a good move to put him back on the Neocate and to stick with that until the doctor is back. At the pediatrician’s office today he also had no weight gain since a week ago and before going on Alimentum, not even half an ounce! He had been gaining at least an ounce a day on Neocate 24 cal. And since we can mix the Neocate to make it more calories but not the Alimentum, I’m happy he’s back on the Neocate and hoping that will help him feel better and continue to help his weight gain!

Carter started to make eye contact with us this last week! YAY! And he spends all of his time on his tummy. He is so uncomfortable on his back that a few of his docs suggested putting him on his tummy instead. So we got an Angelcare monitor that goes under his mattress. It alarms if there is no movement after 20 seconds. And let me tell you – the thing really works!!

We had blood work labs done last week and they all came back at normal levels!! Hooray!! The pediatrician told us we can stop the vitamin D supplement altogether! One med down – 5 to go!! : )

Carter had his 4 month doctor’s appointment last week and he is in the 10th percentile for weight and height, based on the preemie growth chart. When he left the hospital he was in the 3rd percentile so we’re happy about that!

Also, our family is walking to raise money for March of Dimes at the end of April. If you have been following Carter’s story and are in the area – we would love for you to walk with us!!! If you would like to join our team, you can do so at this link: http://www.marchforbabies.org/s_team_page.asp?seid=1960334

If you can’t walk with us but would like to make a monetary donation to help neonatal research, you can do so at the above website.

And last but not least, Carter’s homecoming video. http://www.youtube.com/watch?v=P9KFH_xTEPw

Making this video for Carter to have as a memory of his start to life helped me to shed the tears I didn’t shed during his NICU journey and helped me to finalize that season of our life. Hope you enjoy it!

Have a wonderful Monday! : )

Major weight gain!!

So as you can probably assume, our journey with Carter has not ended just because he came home. We are told we won’t know just how well he’s done until he’s school-age. Still, I celebrate every little success in his journey! Yesterday we visited our pediatrician for his second weight check since being home, he’s now 6 lbs 2 oz. He has gained a pound since being discharged 12 days ago!! He’s also 19 1/4 inches long – finally reached the 19 inch mark!

Physical therapy wants to see him every other week to make sure he’s on target. The therapist didn’t seem to think there were any neurological issues to be concerned about at this point. She gave Carter a test to see what age he is at based on what he exhibits physically. He fell in the average range for an 8 day old!

Speech therapy is seeing him weekly to make sure he continues to do well feeding-wise. He is still on a special nipple and we’re working toward a normal bottle!

His pulmonologist (lung doc) was pleased with his breathing and isn’t going to up his diuretics unless he starts to retain fluid again. So for now he’s being weaned off the diuretics as he gains weight. He will continue his albuterol and pulmacort nebulizer treatments two times a day since that’s been helping his breathing.

Next week we’re off to see the G.I. And eye doc to check his progress with both those areas. In a few weeks we’ll visit the cardiologist to follow up with another echo.

Carter is doing fabulous at home and we are extremely thrilled with his progress!! And Claire can’t seem to give him enough hugs or bring him enough things in his swing. (I found an entire drawer of kitchen utensils piled in his swing one morning…)

Welcome home, Carter!

On December 29 Carter was discharged from Edward Hospital after a 108 NICU stay. It is truly amazing how well he is doing. He is almost 5.5 pounds and still only 18.5 inches long but length is the last to catch up with preemies. He will be 4 months old on the 12th and his adjusted age is 8 days old. : ) While he is doing well at home, he will still follow up with his pediatrician for weekly weight checks, the pulmonologist, speech therapy, physical therapy, the GI doctor, the eye doctor, and his cardiologist. We are impressed that Carter has already taken 10-15 more mL per feeding since he left the hospital a little over a week ago!

Because of Carter’s extremely immature immune system along with his chronic lung disease, we need to limit visitors to our house. What would show as symptoms of the common cold to us, could put Carter back in the hospital and can even turn deadly. As much as we would like to bring him around and show him off, he needs to stay at home with little contact from visitors. : (

Here are a few pictures of his homecoming. Thank you again, from the bottom of our hearts, for all of your prayers, meals, letters/cards, messages, and gifts. We are forever grateful for this wonderful community we live in. We will forever treasure this season in our life.

Last look at the monitor!

Goodbye Carter’s chest of drawers!

Goodbye corner!

Carter’s primary night nurse. Another wonderful nurse!

Signing the discharge paperwork

Big boy! Leaving the hospital at 5 pounds 3 ounces!

All dressed and ready to go home!

Carter’s primary day nurse, Angela. She is the best!!!!

I’m so excited!!

Getting Carter strapped in!

All ready to go!

Steve feeding Carter AT HOME!

Claire and Carter

A little tummy time!

Merry Christmas!

On our way to Christmas Eve dinner, we stopped by with Claire so she could visit her little brother for the first time ever! We were able to sneak in just a couple of photos – so we wanted to share our very first family pictures this Christmas. Happy Holidays to everyone – and many blessings in the new year!

Look Mom, No Tubes!

Our little guy is growing so fast now! He is almost as long as Claire was when we brought her home from the hospital, and he’s staying right about 5 pounds. But the really impressive change over the past three days has been that he’s no longer taped up with his NG (feeding) tube or his Oxygen flow! If he has learned to both eat and breathe on his own, he is cleared to come home on 12/29. The potential setbacks might include him needing to go back on O2 or possibly having a heart rate drop during a feeding (which happens once in a while) which might push him back a day or two. Otherwise, he’s under careful monitoring and they are preparing to discharge him!!

Last night was the first time that I was able to see his little face with absolutely nothing taped or strapped to it. All he had were his heart rate monitor, his 02 monitor, and his breathing rate monitor. Otherwise, he was receiving a breathing treatment when I showed up and then looking around anxiously for his bottle. He had a visit from his grandparents, too. When I was leaving, the nurse and I were discussing his discharge and I told him to be a good boy and practice his breathing – and he smiled a really big smile a few times in a row. He looks like is finally ready to join the rest of his family at home!!

Carter is tube-free for the first time!

Almost Home!

This morning, I spoke with Dr. Covert and he gave me a very detailed update about Carter’s progress. He seemed very impressed that Carter is already taking full bottle feedings regularly right now, as there is an incredibly short window of time for him to acquire this skill. The risk he runs if he doesn’t learn to bottle feed is that he would struggle to eat and grow for some time. There is the slight possibility that Carter could be released from the hospital on Christmas Eve – but the compromise would be that they would not attempt to wean him off of his oxygen flow and would send him home with monitors and oxygen support. The other option was to attempt to balance his medications a little more in the coming days and wean him from his flow. That way, we give him a chance to figure things out in the hospital and see if he might be able to come home without O2. The only tradeoff is a few extra days of waiting patiently.

In the meantime, our family is preparing to move to our new home just a few miles away. As the bank finalizes up paperwork on their end, we are preparing for a holiday of wrapping, unwrapping, packing, and unpacking! We know that there is a great deal of work ahead, especially in the next two weeks, but by mid-January we hope to all be comfortably home together as a family. We have decided that for the moment, we are holding off on sending out Christmas cards until we are at our new address and Carter is home with us. In the meantime, here’s a picture of Carter when Santa came to visit him a week ago. It’s a picture of a picture, so apologies for the quality! We will keep everyone posted as his coming home date draws nearer!