Tummy Time

5/31/14

Here's a picture of Carter doing some tummy time today.  He did awesome.  His neck strength is amazing for a little guy who was due yesterday but came to us 3 months ago.  He also had a photo shoot done today, pictures to come soon.  They are amazing, no suspense though.

Carter's Due Date

Friday, 5/30/14

Today is Carter's due date, I guess you could call it his second birthday.  He had a nice day and has really been eating well the past couple of days.  He is having feeds where he drinks up to 4 ounces.  This of course tires him out so he is also having some nice naps.  Here is a picture of little Carter getting some good rest tonight.

Beach Night

5/28/14

It was so nice tonight we decided to take Carter for a nice walk on the beach.  We think he really enjoyed his first beach visit.

Mommy and Carter enjoying the waves and sky

Carter left his footprints on the beach

A little friend we met along the way

Happy Memorial Day

5/26/14

Carter, Katie and I celebrated Memorial Day with a 2 mile walk to a little park near our house.  It was a nice day and Carter enjoyed the fresh air.  We are still trying to get Carter into a sleep routine.  We thought we were on our way until last night when he stirred and cried for over an hour until 1 am requiring me to get up with him.  Needless to say he did not fall asleep until 5:30 am.  Katie and I have been trading off and on every three hours to wake up with him but he makes it tough when he stays awake from one feed to the next in the middle of the night.  He grunts quite a bit which is interesting and through some research is apparently another preemie thing that will improve and completely go away with time.  Carter is doing really well and continues to amaze us with his little personality.  It is wild to think though that we are 4 days away from her actual due date and here we are with a little 3 month old.  God is good!

On another note I have posted my first substantial post to my new blog to help new preemie parents and parents to be at http://preemiepowerparents.blogspot.com/

Happy 3 months old Baby Carter

Sunday, 5/25/14

Baby Carter is 3 months old today.  Katie and I are so happy to be able to spend a birthday with him in his home with us.  He did really well last night sleeping for 4 hours in one stretch.  We actually woke up before him trying to figure out why he hadn't woke us up yet.  Enjoy our pictures from today and a couple from his bath last night.  Happy Memorial Day and thank you to all those who have served our country in the past, present and future.  Without you miracles would not be possible!

Sleep is good

Saturday, 5/24/14

Carter had a good night last night.  Katie and I stood strong and Carter slept in his bassinet last night.  It took 45 minutes for him to finally calm down and fall asleep but throughout the night when he would awaken for his bottle he would go back in the bassinet without significant issues.  He has been eating well today and sleeping quite a bit, he must be preparing for a growth spurt.

As you all know from my post earlier in the week I have been in the process of creating a new blog to help parents of preemies understand the conditions that preemies will be challenged with so that they can be empowered to make informed decisions.  I am happy to say that I posted my first message to this blog and would ask that you share it with everyone you know.  This blog will also bring awareness to prematurity which affects over 500,000 births each year.  I will continue to provide Carter updates occasionally to this site.  We are blessed with your support and continued prayers.  You all have been a huge part of our lives and Carter's.  Thank you!

Here is the link to the blog entitled, "Preemie Power Parents"

http://preemiepowerparents.blogspot.com/

Late night post

Friday, 5/23/14

I think Carter's schedule is rubbing off on me because I had no idea it was already so late.  Carter is doing great.  He is eating a lot and not sleeping much lol.  We are going to try and force him to sleep in his bassinet tonight so we will see how that goes.  He has a full belly right now and getting ready to go down for some rest.  We had him out today hoping to tire him but I am pretty sure his stamina for activity far exceeds that of Katie and I at the moment.  I really wanted to thank everyone out there in the blogshere who have followed this journey and continue to follow.  All of your thoughts, prayers, and kind gifts will stay with us for life.  Until tomorrow goodnight and happy weekend! 

An education on RSV

Thursday, 5/22/14

Carter had a pulmonology appointment today and it went well.  He was saturating 98% when they hooked him up to the machine to check his oxygen level.  We also discussed RSV season.  RSV stands for respiratory syncytcial virus.  The season for RSV goes from September to March each year will infect almost every child by their second birthday.  Symptoms can be mild however in babies who are at higher risk the complications can be severe leading to respiratory failure and hospitalization.  Since Carter is a preemie he is at high risk for complications.  In an effort to reduce the potential for complications he will start getting monthly Synagis shots beginning in September throughout the RSV season as long as insurance approves it for the entire season.  The most important prevention however is hand washing and reducing potential exposures such as large crowds who may cough or sneeze around little ones.   Carter has been awake quite a bit today so we are hoping for a restful night, but we will see :)

Carter's First Day Out

Wednesday, 5/21/14

Carter had his first pediatrician appointment today.  He did very well.  He didn't cry at all and just laid on the table while Dr. Rodriguez did his exam.  He said that Carter looks great.  We will be going back for a follow-up appointment in 2 weeks.  Tonight we took Carter for a walk around the neighborhood.  He really seemed to like it and stayed awake the entire time.  Tomorrow we have a pediatric pulmonologist appointment in the morning so Carter will have another active day.  He has been doing great with his feedings and today took 90 mL during two of his feeds.  He's a hungry little man.  Katie and I are doing well we have continued to take our rounds at night and I think we came close to 5 hours of sleep each last night, very excited about that.  I just got done reading Carter "The Monster at the End of this Book" he wasn't scared a bit.  Enjoy our pics from the day.

Family Dream Come True

Tuesday, 5/20/14

Our first 24 hours as a family at home have been wonderful.  Carter has been awake a lot taking in the scenery and all of his new stuff like bouncers, a boppy, and a new bassinet.  He was up most of the night so Katie stayed awake with him from 2 a.m.-5 a.m. and I slept, then when Katie came in at 5 a.m. I got up and let her sleep until 9 a.m.  He has slept a little throughout today and is doing well with his feedings.  Marley (the cat) has been interested but has kept his distance and Carter has yet to realize he exists.  Katie and I have absolutely loved finally being able to be a family together.  We are cherishing every second of every minute of every hour of the day as I know we will forever and always.  The nursery is complete and I promised some pictures of my artwork but first take a look at what the hospital gave us yesterday.  It is a comparison of his birth footprints and his discharge footprints.  So very cool!!!  

  

Our long awaited beginning

Monday, 5/19/14

February 25, 2014 started like any other day.  The alarm went off at 6:30 a.m. and we rolled out of bed and got ready for work.  On my way out I kissed my beautiful wife good bye and we exchanged our ceremonial “I love you” and “have a great day, talk to you later”.  It was a beautiful clear day, with no reason to believe this day would be any different than any other day.  At 10:52 a.m. that would all change.  My cell phone sitting on my desk began to vibrate, I see it is Katie calling so I answer.  She immediately tells me that her water broke.  I can remember feeling my heart sink in my chest like I was in a free fall.  She told me that she called her Doctor and was being taken to the hospital by her co-workers.  I told her not to worry everything would be ok and I would meet her there.  I raced the 5 miles to the hospital and made it up to labor and delivery only to find that I beat Katie to the hospital.  I went back downstairs and she was just arriving with her co-workers.  After getting her in a wheelchair we went to labor and delivery where an ultrasound and test confirmed that her water had broken.  Her doctor told us that it was a priority to get her transferred to Orlando where she could be in the care of medical professionals that would be able to provide her and our baby the best care.  She was 26 weeks and 4 days pregnant and our minds were racing with all of the potential scenarios.  I began researching feverishly because over analyzing everything is my best and worst trait.  After realizing that 80% of pregnancies were delivered within one week I became engaged by fear and intrigued by the unknown.  Katie was taken by ambulance to Orlando and at 6 p.m. we arrived at Florida Hospital Orlando.  She and Baby Hoffman were in god’s hands now and realizing this became my strength for getting through all that was to come.  From the moment she was admitted we knew she and our baby were in the best possible place.   Her goal was simple, “Stay Pregnant”.  This was not God’s plan however and shortly after the medical team performed their evaluation Katie began having severe contractions.  Dr. Wolfe and the medical team returned to the room and upon determining that Katie was now in labor she was moved across the hall into an OR suite.  I remember vividly Katie and I looking at one another and saying, “I guess this it”.  We had not been to one class or read one book but that didn’t matter anymore because this was God’s plan.  Katie was being coached by multiple nurses on the importance of pushing continuously with little breaks.  Within 20 minutes, at 8:09 p.m. Baby Hoffman was born.  That moment was the most amazing I have ever seen and without hesitation I told my beautiful wife Katie that she was my hero.  We caught a small glimpse of Baby Hoffman as he was quickly handed off to another medical team through a large rectangular opening that spontaneously appeared in a wall across the room.  A nurse would come to us shortly after his birth with one question, “What is your baby boy’s name?”  We had three in mind but without hesitation we said Carter, and then Katie would add Carter Henry.  Henry was my dad’s middle name that was handed down to me and now handed down to our son.  Although my dad had passed nearly 7 years ago I had never felt so close to him than in that moment. 

                                            Less than 30 minutes after Carter's birth

It would be another 2 hours before we were led to the area where Baby Carter was being cared for.  I wheeled Katie in a wheelchair as we followed the nurse into the treatment room.  We were told that he had multiple IVs one being in his belly button and was on a CPAP machine in addition to other ongoing treatments.  We were fearful and excited to meet our son.  When the nurse led us to his treatment table I remember laying eyes on him and feeling every possible emotion I have ever felt in my life and some I have never felt, all at once.

                                                                   Day 1

Over the next 48 hours Katie and I would make some very difficult decisions and parenthood had begun 14 weeks earlier than we expected.  Fast forward 84 days.  Carter has overcome a Patent Ductus Arteriosis, Retinopathy of Prematurity, Acute Respiratory Distress Syndrome, Bilateral Intraventricular Hemorrhages, Hyponatremia and many other prematurity related conditions.  The medical professionals at Florida Hospital Children’s Orlando have become a part of our family.  They are true professionals who have been our support when we need it the most, our driving force when we need to be strong and our ear when we just need to talk.  They have taught us more than how to take care of a preemie.  We will be grateful for them for the rest of our lives. 

              Two amazing nurses, Heidi and Priscilla who took such amazing care of Carter

This journey has brought us such emotion but it has also brought us together more than we ever thought.  We always knew we had an amazing relationship founded on respect for one another and indescribable love but we had never truly been tested until now.  There is no other person in this world that I could have faced this challenge with.  As we are discharged from the NICU today to take our little boy home I am met with such emotion about life.   I have learned many lessons and the world is a much different place to me now than it was before February 25, 2014.  Katie and I want to thank you all for your support, your love and your unrelenting prayers.  You all kept us strong throughout this journey and gave proof to the goodness in this world.  We truly love you! 

                                                      As we left the NICU today

Throughout this experience I have tried to find ways to give back and although I will continue to update this blog so that all you can continue to follow Carter’s progress as he grows and has preemie follow-up appointments I will be starting a new blog to help new preemie parents.  When this blog goes live I would ask that you share it with everyone you know.  This blog will have up to date studies, research and topics regarding premature births, conditions and challenges.  I will post the link to it on this blog when it goes live.  For now much love from the Hoffman family to yours as we relax and reap the rewards and emotions in our home with Carter on this amazing night.

One Step Closer

Carter PASSED his car seat test!!!!  Was there ever any doubt with this strong boy?  Way to go buddy.  He slept through the majority of it and needed a pulse oximeter change midway through.  He was very comfortable and now sleeping preparing himself for his next feed.

Almost there

5 minutes left in the car seat.  Doing great.  After this he stays connected in his crib for 30 minutes for additional evaluations.  #babycarterstrong!

Ready for Launch

Sunday, 5/18/14

After a nice full tummy and an occupational therapy session the car seat test is underway.  He did well overnight with his ad lib feeds and drank the minimum requirement of 200 mL in a 12 hour shift.  He did 214 mL to be exact.  He lost 5 grams last night but that is not concerning, he is still 6 pounds 8 ounces.  He also had a hearing test done this weekend which was normal but we expected it to be since he startles quite easily.  I will post his results in a bit when his test has concluded, until then enjoy these pictures.

He wasn't so sure in the beginning

After getting comfy and with the help of a pacifier it isn't so bad

20 minutes in we're asleep and doing well!

I got this

Saturday 5/17/14

I have tthis bottle you can let go Mom.

In the Final Stretch

Saturday, 5/17/14

The medical team was just in to talk with us about Carter's progress.  In the past 24 hours Carter has taken 100% of his feeds by mouth.  Today he will have his feeding tube removed and we will go to ad lib feeding.  This means that he will feed when he cues instead of the every three hours that he has been scheduled for in the past.  He will need to continue his weight gain during the next day or two on this schedule to be successful.  We were also advised to bring in his car seat so that he can have his car seat test.  During the car seat test Carter has to be strapped in and sit in it in the room for 60 minutes without lowering his heart rate or decreasing his oxygen saturation level.  All of this preparation means that we are within days of bringing our little boy home.  Continue your prayers for little Carter to be successful over these next couple of days.    

Another bottle please!

Friday, 5/16/14

Carter has had a very nice Friday.  He has completed his 9 a.m., noon and 3 p.m. bottles today.  Feeding him today was amazing.  He actually paced himself the entire time and finished a 56 mL bottle in 20 minutes.  He would suck 4 times then stop to breath and then resume sucking when he was ready.  I didn't see one stress signal the entire feed.  It was a great moment for us.  They haven't made any changes to his feeding orders today.  I think the medical team is just as excited as us to see him successfully finish 100% of his feeds in a 24 hour period so they want to give him a chance without adding more volume too soon.  His weight last night was 6 pounds 7 ounces.  Here is a picture from today's feeding.

The Marathon Training Continues

Thursday, 5/15/14

Today Carter's focus remained on feeding.  He has successfully completed most of his bottles today with the exception of his bottles in the morning.  He has been sleeping in between feeds which seems to be helping his endurance.  They did increase his feeds to 56 mL each feed today.  He is almost at 2 ounces a feed now.  With his continued growth Carter is busting out of his preemie clothes now and onto newborn clothes.  Katie and I are excited for another weekend upon us to spend with Carter and are getting excited to know that with each days progress we are one step closer to spending the weekend in our home with him.

Carter feeding video

Wednesday, 5/14/14

Carter had a great day feeding.  He drank 33 mL of his 9 a.m. bottle, finished his noon bottle, finished his 3 p.m. bottle and for the first time finished a third in a row at his 6 p.m. bottle.  He did all of this in lieu of the fact that they increased his feeds to 55 mL from 53 mL.  Two mL's doesn't seem like much but for him it can be a challenge.  In addition to a picture tonight I included a link to one of his feeds so you all can see the techniques that we have to use when feeding him so that he can catch up with his breathing and the importance of pacing him.  You can see him head bobbing to catch his breath in between every two to three sucks.  He is doing a lot better the past couple of days in his recovery.

https://www.youtube.com/watch?v=cgSO9L_a_6E&feature=youtu.be

 

Sleepy Carter

Tuesday, 5/13/14

So Carter drank two full bottles back to back then stayed awake for 2 hours and tried a third.  After 30 mL of the 53 mL this is the result........................Nice effort little man, you make us proud!!  Sweet dreams!

11 weeks old

Tuesday,  5/13/15

Today Carter turned 11 weeks old.  He is doing very well today and was a trooper for his eye exam.  The results showed another improvement so his next exam will not be for another 3 weeks.  He is still taking full bottles here and there but remains a little lackluster with his stamina.  They have reduced his calories to Neosure 22 which is 22 calories versus 24 since he has gotten into the 50th percentile for his weight.  With time he will perfect the trifecta of suck swallow breath.  Carter asked that no pictures were posted today since he has a little puffiness from the eye drops he had for his eye exam.

Finishing feeds one by one

Monday, 5/12/14

Today Carter took 3 bottles in a row last night.  He did a good job staying awake but it appears that most of the bottles he has been taking have been night time bottles.  This could mean trouble since it seems like he becoming more alert mostly at night.  His 9 a.m. bottle he only took half of his bottle then went to sleep.  He will likely be having his follow-up eye exam tomorrow so we will hopefully get those results when we go to see him tomorrow.  Carter's room is near completion and when it is completed I will post some pictures.  We are still hopeful that he will get this suck, swallow, breath technique within the next week or two.  Keep the prayers coming that he can get past this final hurdle in his journey out of the NICU!

Happy Mother's Day

Sunday, 5/11/14

Today is a day to celebrate mom for all of her sacrifices, her lost sleep, her unconditional love and all of the blessings that she has afforded each and every one of us from the time we were born until eternity.  I not only celebrate my mom on this day but also my wife.  Today is her first Mother's Day.  She never expected to have a little boy in her arms this Mother's Day but we are blessed that she does.  I will never be able to truly imagine the emotions that she feels on this day but I am forever grateful for her strength and love that has guided Carter through his fight.  She is an amazing wife and mother!

Carter is doing well today.  He took a full bottle this morning at 9 a.m. and we are going to try to another at noon.  After a brief little photo session for Mother's Day Katie put him back in his crib for some rest so that he can be ready for his next feed.  He did gain 2 ounces last night and is now 6 pounds 3 ounces.  Here are a couple more pictures from this morning.

Tired Carter

Saturday, 5/10/14

Carter took two bottles back to back this morning at 6 a.m. and 9 a.m. and did well.  He tired himself out and been sleeping most of the day.  Since he has orders to do every other feed by bottle we did have to wake him up for his 3 p.m. bottle however he only took 31 mL of the 51 mL.  I think he is just resting up for Katie's first Mother's Day tomorrow.  He will have another couple bottles on night shift and hopefully will be more alert for them.  His weight has been steady at exactly 6 pounds.  He has mastered dirtying a perfectly clean diaper in under 10 seconds after it has been changed.  Katie and I just changed his outfit and tucked him in.  Here is a picture for your enjoyment that I took just before his feeding today.

37 Weeks Gestation

Friday, 5/9/14

Carter is 37 weeks gestation today and now weighs in at 6 POUNDS!!!!!  Congratulations little man!  He has been taking his full bottle feeds 4 times a day and as he is more alert they will start increasing them to each feed.  Carter has continued to do well with his Occupational Therapy.  He will be having his next eye exam on Tuesday next week.  We are hoping that this next one will be completely normal.  Last night I got his changing table put together at home, it only took me 4 hours and only required one screwdriver (I am not sure if I am scared by that or impressed by the ingenuity of modern engineering).  Next up is the crib and dresser.  I have a feeling these will be a little more advanced, but bring it on.  Here is the latest picture of Carter taken only a few minutes ago in the arms of his beautiful Mommy!

72 Days of Strength

Thursday, 5/8/14

Carter devoured 3 more bottles today.  His orders are now 4 a day with extras as tolerated.  They have increased his feed to 51 mL.  The amount that he gets to drink is calculated based on his weight so as he gains weight the more he gets to drink.  So eating gets more and more challenging since he is expected to drink more and more as he gets bigger in the same or less amount of time.  Carter's strength of the past 72 days has been amazing and this is his last feat before making our dream a reality.  We know he can do this and are so excited to see him take all of his bottles.  During this nurses week we can't say enough about the knowledge, dedication and comfort that the nurses that have taken care of Carter have meant to us.  The have been Carter's lifeline, keeping him safe, making him strong and teaching him life.  We are forever indebted to them for the difference they have made in our life and the life of our precious Carter.  To the nurses of Florida Hospital Orlando Children's a sincere thank you from Carter, Katie and Matt.

Half-way to suck swallow breath

Wednesday, 5/7/14

Today Carter's feeds were increased to 4 bottles a day and more if he is rooting.  Rooting is a reflex that occurs when an infants cheek is stroked.  The baby will typically turn toward the side that was stroked and begin a sucking motion with the mouth.  When Carter roots you know he is ready to eat.  They have also increased his feeds to 50 mL per feed.  He is doing really well tonight and we are anxious for his next weight as he is nearing 6 pounds!!!  Enjoy your Carter pose for the night, he looks asleep but looking at this pose I think he knows there's a camera in his face.

Suck Swallow Breath Little Carter

Tuesday, 5/6/14

Carter has been doing well today.  He is drinking from his bottle right now.  I must admit it is a little nerve racking not being able to see his oxygen saturation while feeding him since I often relied on this number.  As he gets the breathing thing down a little better it will be a lot easier.  They are going to begin increasing the number of bottles he drinks each day.  So far he up to three a day.  Sunday night they plotted his length, head circumference and weight on the growth chart and Carter is in the 30th percentile for his gestational age.  This is very good for him since at one point he was at the 10th percentile.  Also today we received Carter's MRI results.  He would not have normally had one however it is part of the PENUT trial.  His results were good however they did see a little residual blood from his brain bleed that the ultrasound did not pick up.  This is not surprising since an MRI is much more sensitive than the Ultrasound to detect this.  Overall it was a great scan.

  

Cinco de Milko

Monday, 5/5/14

At 12:55 p.m. today Catherine from Speech Therapy called me to share the exciting news that Carter finished an entire bottle of 47 mL of formula!!!  Even after finishing it he remained awake in his crib showing great improvements from falling asleep during his feeds over the weekend.  I have a feeling little Carter is catching on.  As long as he is consistently finishing his feeds like this they will likely increase his bottle feeds to 3 or even 4 a day very soon.  In addition, Carter has gotten rid of one more wire, his O2 saturation monitor.  Since he has gone awhile without any "real" oxygen desaturations there is no reason to continue to monitor this.  Not to mention they are getting Katie and I trained to not worry about his saturation, which we have done consistently the past 10 weeks.  Dressing him in his footsie onsies just got a lot easier!  He will still be attached to the EKG monitor for his heart rate and rhythm.

Relaxing Sunday

Sunday 5/4/14

Carter is having a relaxing day today.  He drank 27 mL of milk this morning.  He did well but tired out a little bit.  Many people have asked about Carter's feeding and those of you that have been reading the blog religiously have heard me say that for preemies feeding is a learned behavior that required some complex coordination of monitoring cues and proper positioning.  Below is the Feeding Plan that Catherine, Carter's Speech Therapist created to ensure that his feeding experience is a positive one that fosters the right amount of learning and patience.  Other than feeding, Carter is growing nicely.  We learned that each Sunday night he has his length, head circumference and weight plotted against the growth chart to see where he is based on his gestational age.  I will post those results tomorrow night or once I get I get them.  He has gained a number of ounces over the weekend and is currently 5 pounds 10 ounces.  All he has to do is get this eating thing down and the long awaited day we have all been praying for will be here.  Suck, swallow, breath little Carter!!

Ultrasound results are in!

Saturday, 5/3/14

Carter has had a good day today.  Let's get right to the great news.  Carter has his follow-up ultrasound yesterday and the results have shown that his brain bleed has completing resolved without any issues.  They have increased his feeds to 47 mL every three hours now and he remains on a fortifier to add an extra 2 calories to each feeding.  He did well with his bottle this afternoon and took 30 mL of the 44 mL.  The rest went into his tube.  Today while Katie was holding him he went into one of the positions that we saw on ultrasound when we had a 4D and I couldn't resist sharing.  He does this often but I never think to take a picture.  It is so interesting how his little personality was apparent before he even came into this world.  I thought you all would enjoy!  Have a great weekend everyone, I know we are!!

36 Weeks Gestation

May 2, 2014

Today Carter is 36 weeks gestation and making improvements in all areas.  He drank 40 mL of his 44 mL bottle today and has continued to do well with his breathing in spite of the hiccups he has right now.  As part of the PENUT trial Carter will have an MRI of his brain tonight.  We should have some results from that tomorrow or Sunday.  He has done well off of his caffeine and Lasix this week.  He has been getting quite a bit of rest today.  I think the photo shoot, OT and ST from yesterday has caught up with him.  

Thursday

Thursday, May 1, 2014

Carter has been a busy little man today.  At 10:00 he had Occupational Therapy, at 10:30 he had his pictures done by the child life specialist and at 12 he had Speech Therapy.  He did very well with his feedings today taking 24 mL of milk.  He has been stable with his oxygen saturation and there have been no changes made to his plan today.  They are ordering his 36 week head ultrasound for tomorrow.  We are excited for the weekend to spend with him, but first I have to go throw out the first pitch at the Cubbie game.