Peek-a-boo

Monday, 3/31/14

Carter has had a good day today.  He has had no changes to his high flow nasal cannula or his feeds.  He did have an eye exam today that we are waiting on the results of.  We are assuming no news is good news.  The eye exam is necessary to look at the retina to detect any evidence of retinopathy of prematurity.  In this condition vessels that supply the retina (the light sensitive nerve tissue that lines the inside back wall of the eye) grow abnormally and can cause varying degrees of vision problems with the worst being blindness.  Stevie Wonder is a well-known person who actually has retinopathy of prematurity that caused his blindness when he was born 6 weeks early.  In most cases it can resolve on its own, with laser therapy or surgical procedures.  I hope you all enjoyed your preemie lesson of the day now enjoy the picture below!

   

Where's my recliner??

Sunday, 3/30/14

Carter has been stable today.  He remains on 5 L/min with anywhere from 25% to 30% oxygen.  His saturation level still bounces all around from the 70%'s to 90%'s.  We have found that in addition to certain positions he also doesn't like to have a dirty diaper, which I can't blame him.  Maybe that means he will be a tidy kid (fingers crossed).  They have left him on 26 mL of milk for now but did decide to increase the amount of time that he gets it.  It will now be going in over 90 minutes.  Dr. Bernstein today felt that he might still be experiencing some reflux so before they change his oxygen settings they want to see if they can control his desaturations by changing his feeds.  He weighs 3 pounds 2 ounces and Dr. Berstein showed us his growth chart today.  His head circumference is in the 30-40% range and his weight is nearly 50%.  They do not pay much attention to the length since it is difficult to get on a squirmy baby.  Here is your Carter pic fix for the day.  I think he wants a recliner already.

 

Yippeee we're at 3

Saturday, 3/29/14

It is official little Carter has broken the 3 pound mark and is now 3 pounds 1 ounce.  We are so excited that he has continued to gain weight and tolerate his feeds.  It only means he is continuing to get stronger and stronger.  His breathing has improved slightly today and it seems that the rest and being primarily on his belly has helped him.  The nurses have worked all day to continue to lower his oxygen while maintaining his oxygen saturation.  This morning he was at 30% oxygen and now he is down to 24% and maintaining his saturation at 90%.  Now get out your tissues and click the link below.  Our niece Kerrington made this slide show for us for Carter's 1 month birthday.  There is only one thing that we love as much as Carter and that is our families!!

http://web.photodex.com/view/7k6k4bm4/?watch-7k6k4bm4

31 Weeks Gestation

Friday, 3/28/14

Today Carter is 31 weeks gestation.  He is 2 pounds 15 ounces.  His feeds are going well and remains on 26 mL every 3 hours.  His respiratory function has been so so today.  He was decreased to 4 L/min and this morning he began to have trouble with his breathing and had a slight rise in his carbon dioxide so they increased him 5 L and also had to increase his oxygen level to 32%.  They have been able to gradually decrease his oxygen level down to 26% and he remains on 5 L/min.  The medical team says that his lungs still sound nice and clear and they believe that he will improve over the next day with his saturation level and oxygen demands.  We did a little bit of kangaroo care today but after his oxygen levels went down a couple times we had to place him back in his baby cave.  Keep growing little man, you are loved by thousands.

  

A Pictures worth a thousand words

Thursday, 3/27/14

Thirsty Thursday

Thursday, 3/27/14

Carter is resting comfortably as I type.  He is doing well and they have decreased his oxygen to 4L/min and he is now on 23% oxygen.  They have increased his feeds to 26 mL every 3 hours.  He has had zero residual so he is loving his milk!!  His current weight is 2 pounds 13 ounces.  He will get weighed again tonight so hopefully soon we can celebrate 3 pounds.  Nurse Michelle has placed him in a bigger diaper today, not because of his size but because of the frequency that he pees through his diaper.  They have had to replace his bedding twice already today.  I think he just wanted a roomier diaper.  His medical team is very proud of the progress that he has made and so are we!!!!  

Weight Gain Train

Wednesday, 3/26/14

With the help of some extra calories Carter has climbed back on board the weight gain train.  He is now 2 pounds 13 ounces.  He did have to have his feeding tube replaced since it came out yesterday as he was going back into the isolette (you may have noticed it was gone in the pics last night).  He took it like a champ, didn't even cry.  He remains on the high flow nasal cannula at 25% however they did decrease him from 6 L to 5 L which is good.  He does have some desaturations but he is able to correct them himself.  Tomorrow Carter will get his first Hepatitis B vaccination.  It will probably feel like nothing compared to the needles he has had up to this point.  I included a picture today of the high flow nasal cannula machine.  It is much smaller than the CPAP and easier to move around for kangaroo care.

  

1 Month Carter Pics

Tuesday Night, 3/25/14

As promised here are some pictures I took tonight before we said goodnight to Carter.

Soooooo tired

Holy crap, what? I'm a month old? No way!

In the act of pulling off the nasal cannula

Happy 1 Month Birthday Baby Carter

Tuesday, March 25, 2014

Happy 1 Month Birthday Carter.  Carter's major accomplishments in his first month of life included things like closing a patent ductus arteriosis, overcoming a decreased sodium from SIADH, respiratory distress syndrome,being on and off the ventilator 3 times, absorbing a grade I/II brain hemorrhage, and being born at 26 weeks and 4 days gestation.  This little man has shown amazing courage, strength and a will to overcome any challenge.  The prayers and support of so many family and friends have helped keep Carter healthy and strong.  For Katie and I you all have been our rock, your prayers have been our faith and your support has been our strength over this past month.  For that we are so forever gracious.  Carter will continue to get stronger and stronger by the day and although we will remain in the NICU for quite some time each day is a blessing with our beautiful little boy.

Now onto some breaking new!  With every new achievement the medical team has given Carter a gift.  For his 1 month birthday they have outdone themselves.  Today they put the CPAP machine in the closet and he is now on a high flow nasal cannula.  This is a major accomplishment considering only one week ago he was on a ventilator.  The higher flow cannula can create CPAP like pressures that is humidified without the large cannula and fixed respirations.  I am not terribly familiar with this method of oxygenation so as I learn more I will let you know.  In terms of his feedings he is doing very well.  They have increased his calories to 24 every 3 hours from 22.  This should certainly help him gain weight gradually.  He is doing some kangaroo care as I type with Katie and going on his 2nd hour and doing great.  I will post some more pictures later but for now enjoy!!

Milk Life

Monday, 3/24/14

Carter has been doing well today.  He has one of his favorite nurses, Heidi.  He gained 2 whole grams today, it's not a loss so that's good.  He has been breathing well today also.  He has only had one episode today of desaturation.  He has been better about leaving his wires alone and with any luck hopefully he has realized that the better he does the wires he gets rid of.  He still fights the diaper changes but at the same time he whimpers if he is dirty and desats.  He is continuing to get his 24 mL of milk every 3 hours through the pump so that it is not too overwhelming for him.  They have added HMF to his milk.  It stands for Human Milk Fortifier.  It is a highly concentrated, high protein liquid that is added to the milk to improve growth and weight gain.  It is superior to powdered versions because those have been found to harbor bacteria.  I included a link for those of you that are interested.

http://preemies.about.com/od/glossary/g/HMF.htm

Full feed ahead

Sunday, 3/23/14

Carter has been increased to full feeds now and is at 24 mL every 3 hours.  It is based off of his weight so it will increase as he gains weight.  If he loses weight it will stay the same.  Today was his first full feed through his tube and his little belly wasn't quite ready because he started to desaturate from the full stomach and they think a little bit of reflux.  They will start administering his feed using a pump now instead of gravity until he gets accustom to it.  They have taken his CPAP off of a breathing rate now so all of his breaths are on his own.  He still has some apnea spells but they are shorter than 10 seconds so we are doing well.  They are also increasing his pressure to 7 to help keep his lungs open and will get a chest x-ray tomorrow.  His weight did decrease a little and he is now 2 pounds 10 ounces.  The medical team is not concerned with this at the moment.  I got to do Kangaroo Care for the first time today.  It was amazing and scary all at the same time (since his reflux apnea happened while he was laying on me).  He eventually stabilized with a little bump in the oxygen and we had him out for a little over 3 hours.  Great family time!

Suck Swallow Breath in no particular order

Saturday Night 3/22/14

Carter had a very good day today.  He has continued to do well on the CPAP at the lower settings.  He is also doing well with his 21 mL of milk every 3 hours.  So much so that they took out his PICC line today and stopped his TPN.  The PICC line has been in for 21 days so it was becoming an infection risk.  He gave the PICC team a hard fought battle in getting the line out.  Although it is not painful don't tell him that because he cried faintly the whole time.  He does have one more dose of steroids that they are going to give through his feeding tube.  Without further ado if you have not already hit play on Carter's first video which I am sure most of you already have this is the first time he sucked.  He quickly desaturated because he forgot to breath but eventually he will learn to do both at the same time.  Way to go little man, you make us proud!

Continued Progress

Saturday, 3/22/14

Carter is doing well today.  We are doing some more kangaroo care today and he is loving it.  They have decreased his CPAP settings again to 10 breaths per minute and he is on 22% oxygen.  They will continue to decrease these settings as long as he tolerates it.  His feeds have also been increased to 21 mL every 3 hours and as long as he tolerates this today they will be stopping his TPN (total parenteral nutrition) and removing his PICC line.  This is great news since it will be one more line out of him.  They said that if for some reason they need to give him a medication they will place a peripheral IV in for a short period.  Getting this line out helps to reduce his infection risk.  We still have a lot of progress to make but Baby Carter continues to amaze us.  Have to go for now, Katie's bladder is about to burst so Carter has to go back into his baby cave.

Sweet Dreams

Friday Night, 3/21/14

Little Carter is getting ready for bed.  He's a little fussy tonight but he looks very comfy in his baby cave.  They have reduced the rate on his CPAP to 20 breaths per minute and he is currently on 22% oxygen.  They have also had to tape the nasal canula to his nose so he does not pull it off like he has been for the past day and a half.  He has become quite the Houdini.

A straight jacket and tape on my nose, this is a little excessive people don't you think, I am only 2 pounds 12 ounces!

24 days old

Friday, 3/21/14

Carter was excited to see us today because it meant he got to get out of the isolette.  He is resting comfortaby on Katie doing some Kangaroo Care.  Kangaroo Care must have been too boring for him because about one hour into it he decided to wet his diaper so bad Katie got peed on.  So then Daddy had to creatively change his diaper and was laughed at by the nurse when she walked in and saw me in gloves.  To my defense I was going in blind I had to be prepared for anything.  On that note they did increase his feedings again.  He is now eating 18 mL every 3 hours.  The Nurse Practitioner said that they had decreased his TPN to a minimum now and if they can continue to increase his feeds over the next day or two his PICC line will be able to be removed and he will not need the TPN anymore.  His weight is still at 2 pounds 12 ounces.  Check back later and I think Carter will have a new picture for everyone.  He has been posing since we got here, and yawning.    

Throwback Thursday

Thursday, 3/20/14

Carter has a good day today.  I got a call earlier today from Nurse Practitioner Mary that Carter decided to remove his CPAP nasal cannula and when they walked in he was waving it in the air.  He is showing off I think.  On that note, after they advised him how important his oxygen is and taped it back securely they did reduce the rate of breaths on the CPAP from 40 to 30 breaths per minute.  He has been doing well with this and they believe they will be able to continue to wean his settings.  His tube feedings have again been increased and now he is eating 15 mL every 3 hours.  I think they are trying to fatten him up before the steroids are stopped on Sunday.  He is still peeing however the medical team are not concerned about the amount since his electrolytes are now more stable.  Since Facebook has termed Thursdays, Throwback Thursdays I thought Carter would like to get in the act so here is the preemie version of Throwback Thursday!  Grow Baby Carter Grow!

Kangaroo Week

Wednesday, 3/19/14

It's another Kangaroo Care Day for Carter.  We have him out of his isolette and doing some needed kangaroo care.  Great for both Carter and Katie!!  He is much less rambunctious today....so far.   He is still on the CPAP machine at a rate of 40 breaths per minute with 21% oxygen and doing well.  He has been urinating too much so the medical team is keeping a close eye on it.  They have had to replete some of his electrolytes.  If you remember back a couple weeks he had some sodium issues because his urine was too concentrated but his output was normal.  Now however, he is peeing too much.  They are talking about getting a renal ultrasound in the morning however no firm decision has been made yet.  Because of this increased urine output he did lose an ounce so now he weighs 2 pounds 12 ounces.  I did change a diaper which by the way I am becoming a pro at since I have to navigate tubes and wires through two small openings while trying to tame the wild man inside who does not like being touched.  If you are wondering it was full, thank you Carter.  

                                    Holding Daddy's finger while laying on Mommy's chest

Happy 3 weeks old Carter

Tuesday, 3/18/14

Happy 3 weeks old little Carter.  Every day is a blessing and Mommy and Daddy are so proud of your strength.

Carter has been taken off of the ventilator and is now back on the CPAP machine.  He has been doing well and his oxygen saturation has been staying in the high 80's and low 90's.  We are so proud of him although he still loves to mouth breath and this does not help the CPAP machine do its job when the air goes in his nose and out his mouth.  They have increased his feeds again to 9 mL every 3 hours.  He is going to get big fast.  Today his weight is 2 pounds and 13 ounces.  He remains on steroids for the next 5 days which will continue to help his respiratory system.  All of the nurses are in love with him, but how could you not be!

                                 Did someone say "Kangaroo Care", get me outta here!!!!!

Luck of the Irish and prayers!

Monday, 3/17/14 Happy St. Patrick's Day

To start this St. Patrick's Day a little Irish Prayer.

May God give you...
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh, a sweet song,
And an answer for each prayer.

Carter has had a very good day today.  Alexis the Nurse Practitioner says that the steroids appear to be working to improve his lung function.  They have been able to decrease his ventilator settings all day and have plans to get him off of the ventilator and back on CPAP within the next day or two.  He has only had two episodes today of his oxygen saturation decreasing.  They have also been increasing his feeds and he is now tolerating 7 mL of breast milk every 3 hours.  Another good news note is that Carter had another ultrasound of his brain today as part of the PENUT trial and the results revealed that the bleed on the right side of his brain is completely gone and the one on the left is improved.  This has been a great day for Carter.  We wish you all a Happy St. Patrick's Day and there is no doubt that the Irishman in heaven has been giving Carter some Irish strength today.  Love you Pa, this is your day!

Carter's 1st Selfie

Sunday, 3/16/14

Carter had a better night and morning.  His secretions have seemed to lessen and he has been more stable on the ventilator.  The nurses really felt that doing some kangaroo care today would be helpful so about 40 minutes ago Nurse Heidi and RT Donna let Carter go on a little field trip to Mommy's chest.  He has been doing very well with this maintaining his oxygen saturation and temperature.  We did talk with the Nurse Practitioner this morning and Carter's white blood count and c-reactive protein did not rise so they will be starting a short course low dose steroid in an attempt to get him off of the ventilator.  They will continue to monitor him for any signs of infection but based on his labs and how he looks clinically today they do not think there is any infection.  Initially this morning he was not feeding well however this afternoon he has done better.  We are looking forward to a week full of progress. 

                                                            Carter's 1st Selfie

The Fighter

Saturday Night, 3/15/14

Carter had a rough day today as did his mommy and daddy.  We went through most of the day with a lot of questions and very little understanding of what was next only because the clinical picture did not lead down any one path.  The nurses and staff did an amazing job all day keeping up with Carter's needs and for that we are so grateful.  His transfusion went well and he back on his feeds getting stronger.  His oxygen needs are back down to 24% and his oxygen saturation is in the low 90's.  Right now he is in favorite position on his belly with his favorite nurse, Yolanda.  As we left him tonight we told him to stay strong, work hard and we love him.  Although we do not know what tomorrow has in store we do know that God has led the hands of these amazing Nurses, Doctors, Respiratory Therapists and Practitioners to our son Carter.  They have made him stronger for tomorrow than what he was today.  This blog goes out to their tireless efforts, their healing hands and the journey that brought them to my family. #babycarterstrong  

Rollercoaster Saturday

Saturday, 3/15/14

I know everyone has been anxiously awaiting an update today and we really appreciate the extra prayers since today has been a bit of a rollercoaster.  Last night Carter was doing well without any real changes.  This morning however when we arrived he had been having episodes of decreased oxygen saturation.  These episodes have gradually worsened during the day.  He has required more oxygen to maintain his oxygen saturation level and in two instances he had to be manually bagged to support his ventilation because his saturation level was in the low 40's.  During this they performed a deep suctioning and he has a mucous plug that was believed to be causing his desaturation.  This has occurred numerous times and now they are performing the suctioning every two hours and in between as needed.  We discussed again with the neonatologist starting a short course of low dose steroids to help reduce inflammation in his lungs to help his lung status and we were set to start this however after some labs it was found that he has a slight increase in his white count that could be concerning for an infection.  This is a very slight increase so they are not certain there is a source of an infection but they are watching it very closely.  In any event they are not able to start steroids yet because they can increase the risk of an infection.  He is also getting another blood transfusion primarily to give him a source of oxygenated blood.  While they give him the transfusion he is not able to have his tube feeds so those have been stopped until tonight.  I will keep you all posted as often as possible.  Thank you for your continued prayers, #babycarterstrong!!

Feed Me!

Friday, 3/14/14

TGIF has taken on a whole new meaning.  It means we get to spend the next three days with Carter.  He remains on the ventilator and is stable.  The medical team is considering starting him on a course of steroids in an effort to reduce some lung inflammation that seems to be preventing him from weaning from the ventilator.  We haven't a chance to talk to the Neonatologist today so that is all we know right now about his lungs.  They did do an x-ray this morning and it reported that his lungs show slight improvement from earlier in the week.  He is eating well, what Hoffman doesn't?  They have increased his feeds to 5 mL every 3 hours.  He has broken his own record for staying off of phototherapy now at 48 hours and going strong.  I have not provided a weight in some time because of the amount of fluid he was retaining last week however it appears that most of it has gone down.  This morning he weighed in at 2 pounds 8 ounces!!!  Grow little Carter grow!

This is a picture of Carter's blood pressure cuff.  It's only 1 inch thick.

Music soothes the soul

Thursday, 3/13/14

Today Monika the childlife specialist was in and brought Carter a music box.  It sits in his incubator and plays lullabies.  I tried to get him to listen to Baby Beethoven a couple days ago but he his saturation dropped so maybe it was too intense.  We will get there.

Medically, he is doing well.  He is on the ventilator still at the same settings.  The Respiratory Therapist said that he sounds good and they are not getting as much fluid during suctioning.  His saturation levels also seem to be doing better.  He stays near the low 90's which is where they want it.  His feeds have been increased again and he is now getting 4 mL every 3 hours.  Eat little Carter!  He is also off of the phototherapy.  Many people have asked, "How does phototherapy work to get rid of the bilirubin"?  I have shared a link that explains it in detail but for those of you who would like the short version the light is able to convert the bilirubin molecules in the body into water soluble isomers that can be excreted through the urine instead of the bowel.  The blue light that is used is very specific and best between 460-490 nanometers.

http://emedicine.medscape.com/article/1894477-overview

I think I can I think I can

Wednesday, 3/12/14

In the past 12 hours Carter has gone #2 three times.  Huge accomplishment.  His reward is an increase in food.  He is now going to 3 ml every 3 hours.  I guess it has finally set in that the only way he gets rid of his light is to get rid of his bilirubin.

He is still on the ventilator.  He has been having some episodes of desaturation to the low 80's.  They are trying to keep him between 85 and 94% oxygen saturation.  They have increased the pressure setting again with the hopes of essentially forcing the fluid out of the lungs.  He is only on 21% oxygen (what we all breath in the air) so that is also very good for him.  I just spoke with the nurse and she said that he is sleeping on his belly (his favorite position) and has been very good today.  This is the first day since he was born that we are not able to make the trip over.  Although it is tough to not see him today he is in great hands.  The past 15 days has caught up to us and we know that he needs us to be well ourselves so tonight will be a night of rest.  See you tomorrow little man.  Love you!!

                                                        Um, which way is out?

Happy 2nd Week Birthday Carter

Tuesday, 3/11/14

First let's say Happy 2nd week birthday baby Carter.  I never thought I would be celebrating weekly birthdays but everyday with this little guy is an absolute blessing that I will never take for granted.  

For his 2nd week birthday the staff gave him a phototherapy light.  Yes, he is back on phototherapy.  His bilirubin is 6.5 and anytime they hit 6 or above the light comes back out.  I think I will start a line of designer masks for preemies.  He remains on the ventilator but is doing well.  He is down to only 21%-23% oxygen which is as low as you can go.  They are planning on an x-ray in the morning so I expect it will look better.  They did increase his feeds to 2 mL every 3 hours which the jury is still out on whether he is tolerating this increase.  He had a bit of residual after the first increased feed so they are hoping this next one will go through without a problem.  

Katie and I are going to a function at 6 that the hospital puts on for parents of the NICU where we get to meet other parents and learn about different things that we can do for him and other topics.  

PDA gone away

Monday, 3/10/14 

Carter has received official results from the cardiac echocardiogram that he closed his PDA.  He celebrated with a nap (see pic below).  He remains on the ventilator and they changed his setting from CMV to SIMV.  Instead of getting a fixed volume they are now providing him with pressure.  He seems to be doing better with this setting.  The hopes are that this will keep the air cells open and help to clear up the fluid.  He is also still off of the phototherapy however his bilirubin did rise today so he better enjoy this while it lasts because without going #2 it's going to be a rave in the man cave in no time.  His feedings were restarted today at 1mL every 3 hours so hopefully he will tolerate it.  Something tells me this is going to be a good week! #babycarterstrong

                   Sleeping Baby Carter.  What you can't see is his left leg sticking out over the nest

Siesta Sunday

Sunday, 3/9/14  2:50 pm

Carter has been restful today being on  the ventilator.  He is on a setting called CMV which is a controlled mechanical ventilation.  In this mode he gets a preset number of fixed-volume breaths.  He appears pretty comfortable with this right now.  Dr. Raj advised us that they will also be doing a repeart echocardiogram in the morning to take a look at the PDA.  He said that the harshness of the murmur has not changed but since Carter still appears to have some fluid in the lungs they want to rule out the possibility that the PDA is the cause.  They have also stopped his feeds for now because he had a high residual in his stomach when they have checked that past couple of times.  His belly is still nice and soft but he has not gone #2 in about 3 or 4 days so they want to give his GI tract a rest.  He is off of his phototherapy again so he is getting to see the blurry world around him for the time being.  Once we get past this fluid issue hopefully we will start to see some better progress on his lung function.

The Return of the Ventilator

Sunday, 3/9/14

Carter did his best to breath but could not maintain himself so at 6:11 am this morning he was placed back on the ventilator.  Although it's tough I know the 17 hours off the ventilator made him just a little bit stronger.  Everyone has heard of baby steps, these are preemie steps. 

Comfy Carter

Saturday Night, 3/8/14

Carter was taken off of the ventilator at around 1pm today.  He was placed back on the CPAP machine and has been holding his own but it has been a challenge.  His oxygen saturation has been up and down all day.  They have had to raise the settings and support and he has been retaining carbon dioxide.  Tonight a respiratory therapist named Katie came in and she has been a miracle worker.  She performed a deep endotracheal suction on Carter then began albuterol treatments.  So far this has helped him quite a bit.  He seems a lot more comfortable and we are praying that this will be the answer to him maintaining his saturation level with as minimal support as possible.  The respiratory system is one of the biggest challenges for babies Carter's size and age.  Katie the respiratory therapist explained that they have to find the perfect recipe of support for his current lung development that will keep him comfortable while at the same time providing just enough support so he is doing the work and keeping up.  This will be a continuous process since a baby's lungs are not fully developed until they are about 36 weeks old.  Today Carter is technically 28 weeks.

He is still tolerating his feeds well.  He is still getting 1 mL every 3 hours and we expect that they will start to increase this in the next couple of days.  We are also hopeful, as is Carter that the phototherapy will be removed within the next day or two.  Sweet dreams baby Carter!

Breath Carter Breath

Saturday, 3/8/14 3:33

Carter has been taken off the ventilator and is again showing us what he's got.  It's his time to shine.  So far he has not been able to maintain is oxygen saturation levels above 85%.  He is on CPAP and they are doing a blood gas to see if they need to add a rate to help him out a little.  Based on the looks of it I am pretty sure they will be adding a rate.  Aside from his breathing troubles he is doing well.  He is tolerating his feedings and he urinating normally.  Dr. Raj said that they will be doing another echocardiogram in a couple of days to take a look at the PDA and make sure it is still small enough to leave alone.  They are apprehensive to give more Indocine since they do feel it contributed to his urinary issues the past few days.  Keep him in your prayers as he starts his battle with breathing.

11 Days Old

Saturday, 3/8/14

Carter is doing well this morning.  Dr. Araya the pediatric nephrologist reported that his sodium and kidney issue has completely resolved on its own.  They have stopped the extra sodium he was getting and his urinary output has gone back to normal.  They are still not entirely sure the exact cause but think it may be related to something called SIADH.  This stands for syndrome of inappropriate antidiuretic hormone secretion.  Basically antidiuretic hormone is a hormone that prevents the production of dilute urine.  So this condition is more related to an abundance of fluid rather than a decrease in sodium.  In any event he is gotten past this hurdle.

We expect today that the ventilator settings will be changed and he may eventually be taken off the ventilator if he does well.  They are going to try him on a setting where he breaths completely on his own before they remove the tube.  As long as he does well with that they will remove it sometime today.  

                                               Carter's favorite position, frogger.

Oh bother, back under the lights

Friday, 3/7/14

Carter is back under the lights.  He just can't seem to kick this mask out of his man cave.  On another note his urination is improving.  His sodium level is back to normal at 140.  He remains on the ventilator because his chest x-ray did show some fluid around his lungs.  The past couple days of fluid retention was the likely cause.  He does appear a lot less puffy so it is improving slowly.  Dr. Rawlings thinks they will be able to get him off the ventilator tomorrow.  Until then he better rest up because once he is off of it again he will have a lot of showing off to do.

                                         What's a man to do to get rid of this mask?

To Pee or not to pee

Thursday, 3/6/14

Tonight Dr. Araya a Pediatric Nephrologist came in to see Carter.  Carter must have known he was coming because tonight he started peeing more and his sodium has started to rise.  Dr. Araya thinks this issue was a combination of the Indocin that was used to treat the PDA and the fact that his umbilical cord line was removed which did have fluid (that contained sodium) going into it.  The Indocin has the potential to reduce urine output so as he retained fluid it diluted the sodium that was in his body.  He is going to continue to monitor Carter's labs but thinks this will resolve without treatment.

He is doing well on the ventilator but does not seem to like the pulmonary therapy.  The respiratory therapist uses a small tool that basically massages his back to free up any mucous in the lungs so that they can suction it out.  We can't wait for tomorrow so we can spend the whole weekend with him.

No mask for Carter

Thursday, 3/6/14

Carter was placed back on the ventilator today because the CPAP was not opening his lung cells as much as they had wanted.  They are also doing vibration therapy to his chest every 4 hours to help bring up some mucous that has settled in the lungs.  He did get another dose of surfactant and NP Michelle reported that his chest x-ray already looks better.  They expect that they will be able to get him back off the ventilator tomorrow but wanted to give him a little break.

His urine production has increased somewhat but not enough so they are consulting a nephrologist to come in take a peek at what his kidneys are doing that may be preventing him from peeing enough and causing his sodium to drop.  His sodium is a bit higher than it was at 128 but isn't quite where they would like it.  He will be in tonight so I will try to give an update when I know more.

As you can see from the picture below if the Zorro mask is outside of the palace it can't possibly be on Carter.  Although I would like to say he ripped it off and threw it out of his palace I can't but he did get rid of the excess bilirubin and is off phototherapy.

Goodnight little guy

Wednesday 3/5/14 9:40 pm

Carter's sodium level is starting to come back up with the additional sodium that they have placed in his IV fluids.  He is still a little puffy in his hands and feet but they are not too worried about it.  His respiratory status did well today.  He seems to be doing well with the added PEEP (postive end expiratory pressure).  He will have some labs rechecked in the morning.  I promised you all a picture so here it is.  Baby Carter saying his prayers on Ash Wednesday!

8 days old

Wednesday 3/5/14 2:50 pm

Today Carter has been doing well.  They made a slight increase to his CPAP settings to increase the force of air in an effort to open up his lungs more (alveoli).  His saturation levels have been good.  We were advised that his brain ultrasound was stable so that is great news.  Although there is still some risk of a worsening bleed it is very small now.  His sodium has decreased and they are watching that closely but they feel it is due to some decrease in urine production.  They have placed him on additional sodium to help it out.  His goal today.....make urine and breath.  He is still under the lights but his bilirubin did decrease to 4.5 so we are hopeful that he will get off that in a day or so, he is hopeful too since he does not like his mask.  Keep up the good work Carter.  Mommy and Daddy love you!  I will post a picture in tonight's blog for you all to enjoy.  Continued prayers!    

Did someone turn the light back on?

Thursday, 3/4/14 07:30 pm

Carter has had a stable day.  He is still on CPAP and has only had a couple apnea episodes since yesterday.  He seems to really enjoy being on his belly.  His echocardiogram revealed that his PDA has almost closed.  Dr. Rawlings said that they will not treat it anymore unless it re-opens.  Carter had his brain ultrasound today however we have not received the results yet.  His bilirubin did go back up today to 6 however it is likely because he had a transfusion yesterday.  He had his feeds restarted today so they expect that as long as his belly kicks back in he will drop his bilirubin and get back out of the phototherapy.  Carter celebrated his 1 week birthday in 60% humidity in his palace fit for a king.

 Someone turned the lights back on so I'm going to just work on my tan since Daddy keeps taking so many pictures.

Happy 1 week Birthday Baby Carter

Tuesday, 3/4/14  3:50 pm

Happy 1 week Birthday Baby Carter.  Mommy and Daddy cannot believe it has been a week since you blessed us with your presence.  In the past seven days you have shown strength, determination, and persistence but most of all you have taught us that although life sometimes presents you with struggles, love and faith will persevere and conquer all.  You have continued to grow and face every challenge that you are given.  You have further strengthened and now joined a strong bond that Mommy and Daddy created almost seven years ago.  We know that this is just the beginning but we can't wait to continue to celebrate every little milestone that you reach for and attain.

  

The Hoffman Family

3/3/14  05:40 pm

Carter has had a nice day off the ventilator.  He has had to have the oxygen level of the CPAP machine raised a couple of times but has been very stable.  We are still awaiting the results of the echocardiogram.  Carter has been removed from his phototherapy which really made him happy.  Most importantly no more Zorro mask.  He opened his little eyes and with mommy and daddy peering in he made eye contact.  It was an amazing moment but wouldn't be the most amazing of the day.  That came when Katie began Kangaroo Care.  Although we were nervous at first to take him from the confines of his palace the reward was well worth it.  Thanks to Nurse Amy she made the experience void of worry.  Seeing Katie hold Baby Carter is the most beautiful thing I have ever seen.  He laid on Katie's chest for an hour and a half and maintained his temperature, his heart rate and his oxygen saturation.  Way to go little man!!

The first photo of the Hoffman Family

6 Days Old

3/3/14 0900 am

Baby Carter had a good night and this morning was taken off of the ventilator.  He seems to be holding his own as they continue to take blood gasses to monitor his success.  He is having an echocardiogram right now to see if his PDA has closed up.  We face some nervousness today as the ventilator is off since we know its his turn to fight again.  We know he can do it because he has proven his strength.  He is still under the lights although his bilirubin did improve slighty to 3.4.  His weight today has hit the 2 pound mark.  Thank you for all of your prayers and keep them coming!

Sunday Rest

3/2/14  6:00pm

Carter has had a fairly restful day, with the exception of some visitors singing to him and reading him stories which he loved.  They are continuing to wean his ventilator and his blood gasses have been doing well with this.  He did get his blood transfusion today that went in over 4 hours.  Katie and I both changed one of his diapers today and if you think it looks small on the picture you should try slipping one up under his little behind.  Katie did such a good job.  She is a great Mommy.  Then Daddy got to do one a couple hours later and Baby Carter must have known to save his surprise for me in the form of meconium.  Needless to say Nurse Alison had to step in and assist.  Carter 1 Daddy 0.  Carter also got to have his mask off for a little bit today and once it went back on he realized it wasn't actually attached to his face so he has been grabbing at it ever since as you can see in the picture today.  He will have another cardiac echo in the morning to see if the PDA has closed and if it has he will be able to start feedings again.  Prayers for that.

5 days old

3/2/14 11:10 am

Little Baby Carter is 5 days old today.  He is still on the ventilator but they have decreased some of the settings and he has maintained all of his vitals signs and breathing.  He has received 2 doses of Indocin and is getting the 3rd dose right now.  Dr. Berstein said that it sounds like the murmur is closing and he feels that his improved ventilator settings are also a sign of that.  They will be doing another cardiac echo in the morning to verify if it has closed.  He is getting a transfusion today because his platelets and hematocrit are a little low.

In other news Baby Carter opened his eyes today.  They turned off his phototherapy for a little while to adjust his nest and he opened them.  Now he has realized he is wearing a mask and keeps putting his hand up there trying to pull it off.  Daddy has had to re-adjust it 3 times already in the past hour.  Make that 4.  

A poem from Carter

3/1/14

A Poem from Carter

I came into this world earlier than expected,

But with eyes still shut I feel so protected.

I have my good days and some bad as I look to you to lean,

But everyday I grow, I’ll be stronger than you have seen.

My voice may be faint, and features may be small,

But my will to fight this battle will forever be so tall.

I hear all of your prayers, your thoughts and love,

But you have no need to worry, because I have protection from above.

Love Baby Carter 

New month new strength

3/1/14  08:44 pm

Carter had a very good day today.  He successfully had a PICC line placed that will allow them to take out the other IVs that are going into his belly.  This will reduce his risk of getting an infection.  He will begin getting the Indocin tonight to hopefully close up the PDA, Dr. Berstein said that there is a 40-50% chance this will work.  They can repeat the treatment one more time if it does not work the first time.  If it does not again they will need to do a surgical procedure to tie off this vessel.  His feedings will stop while they do this but he was tolerating his feeds well so we are optimistic that this PDA will close quickly and allow him to get back on track.  He remains on the ventilator but he really needed it because he was so much more stable today.  Tonight the nurse was switching out all of his IV tubing which is a small task since he has multiple types of fluids going and it has to be done under sterile technique.  Thank you to everyone who reads Carter's story.  I tell him daily about all of the love and support you all have been shining down on him.
 

MId day update

3/1/14 12:06

Carter is still doing well on his ventilator.  He also had his first bowel movement.  They are attempting to place his PICC line again in hopes of getting rid of his other lines.  We saw Dr. Berstein today and Carter has a PDA, it stands for Patient Ductus Arteriosis.  It is a heart murmur that is common in babies this small.  The easy way to explain it is that when babies are in mommy they do not need to use their lungs so this vessel shunts blood away from the lungs to the body.  When they are born this vessel typically closes off however in pre-term babies this oftentimes does not happen.  They are going to try to fix this using a medication called Indocin.  In the meantime they have to stop his feeds because of some of the potential side effects.  He will still be getting his TPN by IV for nutrition.  Two goals today:  PICC line and PDA closure.  #babycarterstrong

A bump in the road

3/1/14 10:05 am

Baby Carter had a restful night.  Late last night he decided he was too tired and had to be placed back on the ventilator.  They also took it as an opportunity to give him more surfactant to help his lungs.  He is doing pretty well with his feedings however he has not had a bowel movement yet.  He is 1 lb 13 ounces today.  His bilirubin is stable but not good enough yet to remove his phototherapy, so the zorro mask stays for now.  I also read him his first book today.  It was called Let's go Camping.  I think he liked it.

Today's picture is Carter's diaper (unused).  It's pretty small!