Sean's Journey 8.31.11

Oh my gosh!  Sean will be coming home...soon!  September begins tomorrow.  He will be coming home sometime in September.  We are not sure when exactly, but it will be in September!  We are excited and nervous.  God has blessed me with a wonderful and supportive husband and now a baby!   Life doesn't get any better than this!  It has been great becoming a Mom.  I feel like a Mom....but I know I will really feel like a Mom when Sean comes home.  I have heard about the sleepless nights.... and now we get to experience them!  I never thought I would be excited about sleepless nights, but sleepless nights mean our Sean is home with us where he belongs.  Awesome! 

Sean is doing good.  He is still on the nasal cannula, (21% oxygen),  but they are already beginning to wean him from it.  He went from 2 liters to 1 liter today.  The next step is taking him off the nasal cannula completely, sometime next week they say.  Hopefully, he will succeed.  Please pray that he does.

After he is off the nasal cannula, the next step is that he will have to nipple all meals.  In other words, they will take him off the feeding tube. 

Then he will be ready to come home!   Wow!  A baby in our home.  How exciting is that?! 

Sean continues to tolerate his feedings.  He now weighs 5 lbs. 10.4 oz. 

Thank you for your continued prayers and support,
Sean's Mommy & Daddy

Sean's Journey 8.30.11

Sean is getting closer and closer to being ready to come home.  We are only weeks away from his homecoming.  I spoke with his primary RN today and she said that sometimes they can tell parents a few days in advance when their baby is coming home....sometimes it can be one or two days notice.  She said "get ready"...  That's what we are doing...getting ready for our Sean's homecoming.  Daddy has been busy straightening and organizing the room for Sean. 

Sean continues to tolerate his feedings.  He's  up to 3 bottles a day + being fed through the feeding tube.  He now weighs 5 lbs.  8.8oz. 

He continues on 21% room air.  This morning he had a few DSATs and had a Brady/Apnea episode.  But overall, he had a good day.  The RNs say Sean will outgrow these episodes and they will not send him home until he is ready. 

Sean is becoming more aware of familiar voices.  He is wanting to interact. 

He had another eye exam today.  These take place every Tuesday.  We will have the results back in a couple of days. 

Thank you for your prayers & support,
Sean's Mommy & Daddy

Happy 2 month B/day Sean!

Today Sean turned 2 months old!  If he was still in the womb, I'd be 35 weeks pregnant which means he would be born in 5 weeks on October 3rd.  The reason I mention this is because Sean's "corrected age" is 35 weeks, not two months.  When he comes home next month, he will be like a newborn baby. 

Sean's feedings were increased today to 46 cc's of milk every three hour.  He is being bottle fed 3 times a day.  His weight is 5 lbs. 8.5oz! 

Today they stopped giving Sean caffeine.  The caffeine was given to him after he was first born to help remind him to breathe.  He is doing so much better with his breathing that he no longer needs caffeine. 
Sean continues at 21% room air.  He is not requiring any extra oxygen.  The nasal cannula blows air into his nasal passage to his lungs, but does not provide additional oxygen.  Docs are talking about removing the nasal cannula in about 1 week.  We will have to wait and see how Sean does and if he is ready. 

Now that Sean is getting bigger and so much more alert, we are enjoying our time with him even more than before!  We love being Sean's parents. 

Sean's Mommy & Daddy

Sean's Journey 8.28.11

Sean had a good weekend.  He continues to tolerate his feedings.   44 cc's of milk every 3 hours. 

He got a bath last night and loved it!   Sean likes to splash in the water. 

Sean is doing better with his breathing.  He continues on the nasal cannula and is at 21% oxygen.  Thank God he's getting there.  Slowly, but surely.  He rarely has a Apnea/Brady episode anymore and he DSATs occasionally. 

He continues to take water pills to help with water retention.  This seems to be helping with his breathing.  Sean may have had a little water in his lungs, so the water pills help flush out the water. 

Mommy & Daddy spent a lot of time at the hospital this weekend.  We had great bonding time with Sean! 

We are looking forward to his home coming next month.

Thank you for your continued prayers and support.

Sean's Mommy & Daddy

A Preemie’s Bill of Rights

By: READ MCCARTY

I DESERVE…to be understood and treated as the individual I am. I deserve to have my language of cues and signals understood by you, my caregiver. My grimaces, hand stretches, frowns and hiccups are as meaningful as any words, but delivered in the only language I know.

I DESERVE…your recognition that I may be completing many months of my physical

and neurological development outside the protection of my mother’s womb. Even as you

give me the life sustaining care I so badly need, as much as possible I deserve to have

the boundaries, quiet, warmth, gentle stimulation, dim lighting and fetal positioning

I would have in my mother’s womb.

I DESERVE…periods of uninterrupted quiet so I can use my energy to grow and not

hopelessly trying to overcome excess light, noise and over stimulation.

I DESERVE…the warmth, tenderness and comfort of being held by my parents as soon as they feel comfortable and when my medical condition allows.

I DESERVE…the positive energy of love…your kind thoughts and words as you care for me…my father’s soft touch…my mother’s gentle words…a volunteer’s quiet rocking. I deserve these things because in your heart you know their worth even though their absolute clinical value may never be proven.

I DESERVE…your understanding that what is normal and routine for you, as my caregiver, is abnormal and frightening for my mom and dad. So please answer kindly no matter how many times they ask the same question. They deserve your support and understanding and the support of other families as they go through the roller coaster experience of the NICU.

I DESERVE…your recognition that my parents are an integral part of my caregiving team and should be allowed and encouraged to the best of their ability to help care for me during my stay in your hospital.

I DESERVE…your understanding that part of your job is to help my family bond with me

as we learn to trust each other in preparation for my homecoming.

I DESERVE…continuity of care from the NICU to my home… from my neonatologist to my

primary care giver… so together my family and I can reach our full potential.

YOU DESERVE MY THANKS AND RECOGNITION – I AM HERE BECAUSE OF YOU!

Sean's Journey 8.25.11

Sean had a great night and a great day!   He is still on the nasal cannula.  His oxygen has been at 21%. 

He is still drinking 44 cc's of milk every 3 hours.  He's drinking 2 bottles a day, but is getting most of his nutrition from the feeding tube. 

The Docs gave him 2 more doses of Lasix (water pills) because he was still retaining water.  They are hoping that the Lasix will help him not to DSAT too low.  So far it appears to be helping. 

We have not received the results from his eye exam, but if anything was wrong we would have heard by now. 

Sean had another session of physical therapy today.  Mommy learned how to do infant massage on Sean.  It was fun!   Sean enjoyed his massage!  He loves being pampered. 

Thank you for your continued prayers!
Sean's Mommy & Daddy

Sean's Journey 8.24.11

Sean had a good night and a good day.

He weighs 5 lbs. 4oz! 

Sean had more physical therapy today.  He did great!  Mommy learned what exercises to do with him for when he gets home.

Thanks for your continued prayers and support.
Sean's Mommy and Daddy

Sean's Journey 8.23.11

Sean had a great night last night.  He was at 21% oxygen (room air) all night!   He had only one DSAT.  No Apnea/Brady episodes.  He did so well that they placed him back on the nasal cannula.  The regular nasal cannula (2 liters), not the High Flow nasal cannula (4 to 6 liters).  Once again he is off the CPAP!  We are excited!  All day today, he was at 21% oxygen.  He did great!  We are hoping he continues on this good course with no setbacks. 

Sean now weighs 5 lbs. 1.7oz!  He continues to tolerate his feedings.  Today they went up to 44 cc's every 3 hours.  Mommy & Sean spent some really good bonding time together today.  It was so good to see him off the bubble CPAP.  He was bottle fed twice today.  He drank 5 cc's of breastmilk each time.  Now that he is back on the nasal cannula, the RNs are hoping he begins to drink more from the bottle.  Sean continues on tube feeding. 

Sean has outgrown his tiny preemie clothes.  He's getting so much bigger.

Today he had physical therapy.  Mommy received lessons on what kind of exercises to help Sean with when he comes home. 

Sean also had eye exam number three today.  We won't have the results back for 48 hours.  The RN said that the dangerous time is over and if anything was wrong we would have heard sometime by now.  These eye exams take place every Tuesday and will continue when Sean gets released from the hospital.  They place drops into Sean's eyes and check the retinal blood vessels for ROP (eye disease that affects prematurely born babies).

Thank you for your continued support and prayers.
Sean's Mommy & Daddy

Whoo-Hoo! Sean weighs 5 lbs. 0.6oz! - Sean's Journey 8.22.11

Sean's weighs 5 lbs. 0.6oz.!  He continues to tolerate his feedings.  He's drinking 42 cc's of breastmilk every 3 hours.  Today the RNs began giving him 2 bottles a day.  One of the criteria for him going home is that he must be able to nipple all meals (no more feeding tube).  From the bottle, he drank only 2 cc's each time.  He got tired.  Sucking is hard work for small infants.  The rest of his feedings are via a feeding tube that goes through his mouth directly to his stomach.

Sean had another chest x-ray this morning, it looked better than yesterday's.  The bubble CPAP is helping his lungs expand.  Last night he was at 25% oxygen and 28% during feedings.  He tends to DSAT during feedings due to acid reflux, so the RNs give him a little more oxygen. 

Today he was a lot more stable.  He's been at 21 - 25% oxygen.  Sean will be placed back on the nasal cannula when his oxygen is at room air...21%.  The way I understand is...when Sean is at 21% room air for over 24 hours without any A,B, D's (Apnea/Brady/DSATs), he will be placed back on the nasal cannula. 

Sean will soon outgrow his Preemie clothes.  Today Daddy & Mommy took Daddy's favorite Preemie outfit to the hospital and took some pictures of Sean in it.  He looked really cute...CPAP & all. 

We are learning a lot about Sean.  He's a good baby.  The RNs describe him as mellow (like his Daddy!).  He doesn't fuss alot unless he is tired, has a dirty diaper or is hungry.  He loves sucking on his pacifier.  And enjoys music from his music mobile.  Sean has began to smile especially when Mommy & Daddy visit and he hears our voice. 

We are enjoying our baby boy and look forward to getting him home some time in September.

Thank you for your continued prayers and support.
Sean's Mommy & Daddy

Sean's Journey 8.21.11

Sean continues to tolerate his feedings.  He now weighs 4 lbs. 13.8oz!  He is being bottle fed once a day.  He gets most of his nutrition via the feeding tube. 

After being placed back on the bubble CPAP, PEEP 6 (positive end-expiratory pressure), he is DSATing a lot less.  His oxygen level has been at 23 - 25%.  This is better than where it was on the nasal cannula 28 - 30%. 

Mommy held him for over 2 hours today.  It was wonderful!  

We love our baby boy!

Sean's Mommy & Daddy

Ups & Downs in the NICU 8.21.11

Today has been an emotional roller coaster for Mom.  When NICU experiences go up and down, so do Mommy's emotions.  Today, I have felt joy, hope, excitement, anger, frustration, dissapointment and sadness. (Sean is O.K....please read on).

The morning began with joy, hope and excitement because Sean was doing well on the nasal cannula with High Flow and High Humitity.  As I mentioned in my previous entry there had been some discussion about Sean being placed back on the bubble CPAP.  The reason for this was because Sean was beginning to DSAT a little more than normal.  And when he did DSAT, he was dipping down into into the low teens.  This was not good. 

Yesterday to help resolve this issue, Docs decided to go higher on the nasal cannula pressure.  A week ago when Sean was first placed on the nasal cannula, he was at 2 liters of pressure.  He needed more help, so they went up to 4 liters and then finally 6 liters yesterday.  He did really good last night and this morning on the 6 liters of pressure.  I received a great report from the RN this morning and was hoping and praying that Sean would continue to do well and not need to go back to the bubble CPAP.  I was told that Sean was comfortable the entire night and he was doing very well.  No DSATs or Brady's!   He was alert and looking around.  The RN said, "he is a totally different baby" (in reference to his breathing).

After hearing such wonderful news from the RN this morning, I was hopeful and excited that maybe.... just maybe....our baby boy would succeed and wouldn't need to go back on the bubble CPAP.  Just before the RN and I ended our conversation, she said that sometimes it is a battle of will/personalities & different ways of thinking regarding what is best...bubble CPAP vs. High Flow High Humitity Nasal Cannula. 

How quickly things change...several hours later we received a call from the hospital telling us that they took an xray of Sean's lungs and his lungs looked a little hazy compared to the last xray earlier in the week.  Instead of seeing 8 ribs they could only see 7.  This can be the beginning of Atelectasis (collapsed lung).  This is nothing that can't be resolved.  As a matter of fact, Sean has already had Atelectasis during his hospital stay and it has been resolved.  It can be resolved again and of course we want it to be resolved.  We were just hoping it would be resolved by the nasal cannula and not the bubble CPAP.  Sean is simply not ready for the nasal cannula.  This after noon at about 1 PM, our baby boy was placed back on the CPAP.  We understand this is what is best for Sean and we want what is best for Sean.  We were just hoping he would be able to stay on the nasal cannula. 

The reason Docs decided to go back to the CPAP was because it is more reliable.  They know how much pressure Sean is getting.  Whereas with the High Flow High Humitity nasal cannula, even though it is at 6 liters of pressure....it can actually be at 5 or 4.  And there may be a chance Sean's lungs are not getting enough pressure. 

I understand that this is best for Sean, but I still felt anger, sadness and frustration after he was placed back on the bubble CPAP.  I am over it now, but wanted to share.  I will miss seeing our baby boy's face.  With the CPAP equipment it makes it difficult to see his entire face.  With the CPAP equipment and now the feeding tube back in his mouth (instead of his nose), this may get in the way of his development to suck and make it harder for him.  Sean likes to lift and turn his head from side to side...with the CPAP equipment on his head he will have a harder time doing this.  Again, I understand why, but I couldn't help, but feel dissapointment and sadness.

Sean will be off the CPAP again when he is ready.  Please keep him in prayer.

Sean's Mommy & Daddy

Sean's Journey 8.20.11

Sean continues to tolerate his feedings.  He is back at 42 cc's of breast milk + 26 calories of HMF (Human Milk Fortifier) every 3 hours.  He now weighs 4 lbs. 12.4 oz! 
Today was an exciting day for both Sean & Mommy.  Sean breastfed for the first time! 

He continues on the Nasal Cannula with High Flow & High Humitity.  He was contining to DSAT, so there was some discussion about placing him back on the bubble CPAP.  Instead what Doc/RN decided to do was give him a higher flow and keep him on the Nasal Cannula.  This is good news. 
Oxygen has been at 28 - 30% (goal is room air at 21%). 

Sean had a quick bath and his hair washed today.  He loved it! 

Daddy & Mommy have been busy preparing for Sean's homecoming...which will hopefully take place sometime in September. 

Please pray that Sean continues on a good course with no setbacks. 

Sean's Mommy & Daddy

NICU Lingo

1. Apnea:  Interruption of breathing that lasts 15 seconds or more.
2. Atelectasis - the lack of gas exchange within alveoli, due to alveolar collapse or fluid consolidation. It may affect part or all of one lung. It is a condition where the alveoli are deflated, as distinct from pulmonary consolidation.
3. Bradycardia: Slow heart rate.
4. CC's - cubic centimeters (same as milliliters). 
5. CPAP: Air is delivered to a baby's lungs through either small tubes in the baby's nose or through a tube that has been inserted into his windpipe.  The tubes are attached to a mechanical ventilator, which helps the baby breathe, but does not breathe for him. 
6. DSAT - Desaturation - a decrease in the percentage of oxygen found in the circulating blood supply.
7. Gavage feeding: Feeding through a flexible tube placed through the nose or mouth to the stomach.
8. HMF:  Human Milk Fortifier - Powders added to breast milk to increase the amount of calories.
9. Incubator:  Babies are placed in this clear plastic box, which keep them warm and protects them from germs and noice.
10. Kangaroo care:  Holding a baby with skin-to-skin contact.
11. Nasal cannula:  Soft plastic tubes that fit into or under a baby's nose to deliver oxygen. 
12. NICU: Neonatal intensive care unit
13. PEEP: positive end-expiratory pressure. A method of ventilation in which airway pressure is maintained above atmospheric pressure at the end of exhalation by means of a mechanical impedance, usually a valve, within the circuit. The purpose of PEEP is to increase the volume of gas remaining in the lungs at the end of expiration in order to decrease the shunting of blood through the lungs and improve gas exchange. 
14. Pulse oximeter:  Small device that uses a light sensor to help determine blood oxygen levels
15. Retina:  Lining at the rear of the eye that relays messages to the brain.
16. ROP - eye disease that affects prematurely born babies. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but it may lead to blindness in serious cases. As such, all preterm babies are at risk for ROP, and very low birth weight is an additional risk factor. Both oxygen toxicity and relative hypoxia can contribute to the development of ROP.
17. Room air - Room air only contains 21% oxygen, and increasing the fraction of oxygen in the breathing gas increases the amount of oxygen in the blood. It is often only required to raise the fraction of oxygen delivered to 30–35% and this is done by use of a nasal cannula.

Source:  March of Dimes

Sean's Journey 8.18.11

Sean is still on the nasal cannula, but he was starting to DSAT/Brady more again.  There was some discussion about putting him back on the bubble CPAP, but the RNs suggested to the Doctors that instead of putting Sean on the bubble CPAP to put him on the HFHH nasal cannula.  High flow, High humitity.  This gives Sean's lungs a little more support, but keeps him off the bubble CPAP. 

The water tablets helped Sean. He is a lot less puffy and has had a lot of urine output.  The water tablets appeared to work and flushed out the excess fluid.  Hopefully they did not flush him of too many Electrolytes.  They will check for this on Monday.  He looks better and not so puffy.

Sean continues to tolerate his feeding well.  He is on 40 cc's every 3 hours.  He is getting bottle fed at least once a day from the RNs.  He continues on his feeding tube.  Sean now weighs 4 lbs.  11.9 oz!   He loves to suck on his pacifier. 

Mommy had a great afternoon with Sean.  I was able to hold him while he was being fed through the feeding tube.  Sean was wide awake when Mommy arrived, but fell asleep in Mommy's arms.  Mommy had a hard time staying awake.  Looking forward to when he comes home and we can take naps together. 

Thank you for your continued prayers and support.
Sean's Mommy & Daddy

Sean's Journey 8.17.11

We just got home from visiting Sean.  Daddy held Sean for a long time.  Sean was so peaceful in Daddy's arms.  Daddy spoke with Sean and sang a few songs to him. 

Sean continues on the nasal cannula.  Overall, he is doing better with his breathing.  He's at 26 - 30% oxygen. 

Sean has been swollen since last week (Edema - swelling in the body caused by fluid).  "Edema is common in premature babies, whose urinary and circulatory systems are not fully developed."  Sean was given a diuretic to help with the Edema.  "Diuretics referred to as ‘water tablets remove excess fluid from the body by increasing the production of urine."

Thank you for your support & prayers.
Sean's Mommy & Daddy

Sean's Journey 8.16.11

So far Sean is succeeding on the nasal cannula.  He loves being off the CPAP machine.  His oxygen level is at 28 - 30% (goal is 21% - room air).  He occasionally has an Apnea/Brady episode, but it's usually around feeding time.  Most likely it is due to acid reflux.  He also continues to DSAT from time to time.  We've been told overall he is doing well. 

Sean has been sleeping really good.  He loves his music mobile.  The night shift RN says..."he's really into it." He loves to watch the animals go round and round. 

Sean continues to tolerate his feedings.  He now weighs 4 lbs.  11 oz.!  He was at 42 cc's of milk every 3 hours, but Docs decided to come down to 36 cc's.  They are trying to "dry him out" because he still looks a little puffy and it may be due to water retention.  Sean is getting a bottle a day, but how much he consumes is up to him.  He continues to get most of his nutrition from his feeding tube. 

Mommy spent time holding him today.  His hair was washed last night.  He was so cuddly and clean today. 

We love our baby boy and look forward to getting him home when he is ready.  The last 1.5 months have gone by quickly...before we know it Sean will be on his way home. 

Mommy & Daddy are getting his bedroom ready and we are scheduled for a infant CPR class next week.  Good info to know, but hopefully we won't need to use it.  If we do, we want to be prepared. 

Sean's eye exam was today.  His eyes are still immature and there is no sign of retinal detachment.  This is good news. 

Thank you for your prayers!
Sean's Mommy & Daddy

Sean's Journey 8.15.11

Sean is doing well on the nasal cannula!   So far so good.  :)   He is happy to be off the CPAP.  Our hope is that he will continue to move forward with no setbacks.  His oxygen level has been mostly at 25%. 

The RN washed his hair last night.  He's nice & clean. 

Sean's feedings continue to go well.  He is now at 42 cc's every 3 hours. 

Suck...swallow...breathe.  Today Sean nippled his first bottle!  He had 19 cc's of milk from the bottle.  Awesome!   And...he remembered to swallow and breathe! 
Our big boy is now at 4 lbs.  9.2oz.  He is getting so much bigger (compared to his 2 lb. 4oz. birth weight).

Daddy drew black & white shapes (circle, square, rectangle, etc.) for Sean on 3x5 cards.  The RNs suggested that this is good for Sean's brain development.  The black/white contrast helps him focus.

Tomorrow (Tuesday) is Sean's weekly eye exam.  Please pray that all goes well with his eye exam & results.

Thank you for your continued support.
Sean's Mommy & Daddy

Sean's Journey 8.14.11

Sean put on a little more weight.  He now weighs 4 lbs.  8.7 oz! 

He loves his pacifier.  He is doing well with sucking...he will soon learn how to swallow.

Today was a big day for Sean.  He is off the CPAP!!!!   He is now on the nasal cannula.  So far so good.  Sean still requires extra oxygen, but he is one step closer to getting off oxygen completely.  He is requiring 23 - 28% oxygen.  He will need to be at 21% (room air) before he is released from the hospital. 

He is doing well with the nasal cannula.  Today he had an occasional Apnea/Brady/DSAT, but overall he is doing well so far.  We are hoping he is strong enough to handle the nasal cannula and not get too tired. 

Sean is enjoying his new music mobile.  He likes the music and loves to watch the animals on the mobile go round & round.  He is so much more alert. 

Please continue to pray for our baby boy. 

Thank you for your support,
Sean's Mommy & Daddy

Sean's Journey 8.13.11 - Heavyweight Champion...Sean...weighing in at...

4 lbs. 7.3 oz!!!!  Wow!  A couple of days ago Sean weighed less than 4 lbs.  From yesterday to today, he put on 220 grams!  This is a huge increase.  This is good news, but they are watching Sean closely to make sure he doesn't look too puffy.  Puffiness could be a sign that he is retaining water.  So far so good.  There are no signs of water retention. 

Daddy & Mommy had a great day with Sean today.  He is so much more alert and so much bigger than when he was first born.  Mommy was able to hold Sean again today.  It was an incredible experience...and so much fun!  We are enjoying our time with our baby boy.  We are looking forward to getting him home when he is ready. 

He is having less and less Apnea/Brady episodes.  They are almost non-existent.  His oxygen level was at 25% today.  When Mommy held him, RN tried Sean on the nasal cannula (no CPAP) and he did great!   His oxygen seems to be regulating. 

Please pray that when he is placed on the nasal cannula, he will succeed. 

Thank you for your support and prayers!
Sean's Mommy & Daddy

Sean's Journey 8.12.11

Sean put on more weight!   He's now at 3 lbs. 15.7 oz. 
He's eating 38cc's every 3 hours.  He continues to tolerate feedings well. 

Yesterday he was at 21 - 25% oxygen.  Last night, the RN said he was at 28 - 30%. 
He had one Apnea/Brady when Mommy was visiting yesterday.  Sean continues to have occasional DSATs.  The Docs continue to talk about taking Sean off the CPAP and placing him on the nasal cannula.  This is good news.  It most likely will happen soon.

The RN gave him a bath  & washed his hair last night.  Sean likes to be nice & clean. 

The results from his second eye exam  were good.  His eyes are still immature.

He is also getting physcial therapy 3 times a week. 

Please continue to pray for Sean's eating, breathing and eye site. 

Sean's Mommy & Daddy.

Sean's Journey 8.11.11

Sean had a good day yesterday.  He moved from the incubator (isolette) to a crib.  He is now able to regulate a normal body temperature!  Mommy & Daddy celebrated this milestone by taking Sean a baby mobile with music.  He will now be able to listen to soothing music in his new bed! 

When Daddy was talking with Sean last night, Sean smiled at us for the first time. We are beginning to see more facial expressions.   

His feedings have been increased to 38 cc's every 3 hours.  He continues to tolerate his feedings. 

Sean likes sucking on his pacifier.  He is learning how to suck.  He will learn how to swallow soon. 

He had very few Apnea/Brady episodes yesterday and during the night.  He continues to DSAT occasionally.  Yesterday he was at 28 -30% oxygen.  Last night, the RN had him at 21 - 23% oxygen (the goal is 21%, room air).  There has been some discussion about taking Sean off the CPAP machine and going to the next step, the nasal cannula.  This will most likely happen soon.  The only way we will know if Sean is ready is if we try and see how he does.

According to the RN this morning, Sean had a really good night.  He slept deeply....he was still and calm.  She said he likes his new mobile with music.

Please pray that when Sean is taken off the CPAP and placed on the nasal cannula, he will do well with his breathing and oxygen level. 

Sean's Mommy & Daddy  

Sean's Journey 8.10.11

Sean was a little wiped out from his eye exam yesterday, but overall he had a good day. 

Now that he can wear clothes, he looks like a "big" boy in his new Preemie outfits. 

Sean really likes the pacifier.  This will help to prepare him for bottle feeding.

He is strong enough to lift his head and move it from side to side, even with the CPAP on his head. 

Sean had a good night last night.  No Brady/Apnea episodes.  He had at least one during the day yesterday. 

Yesterday his oxygen level was at 28 - 30%.  Last night, the RN dropped him down to 26%.   He will need to be at 21% oxygen (room air) before he is able to come home.

Sean's feedings are going well. 36cc's every 3 hours. 

Before Sean is released from the hospital, he will need to be at 21% room air, his body temperature will need to be stable, and he will need to be nippling all feeds.  This is the criteria Sean will need to meet before coming home.  Mommy & Daddy's best guess is mid-September.  We will need to wait and see....

Mommy goes back to work this Monday, so she can be home with Sean when he comes home from the hospital.  We will continue to visit Sean at the hospital after work.

Thank you for your continued prayers for our baby boy.

Sean's Mommy & Daddy

Sean's Journey 8.9.11

Sean had a good day yesterday.  He looks so much bigger than he did when he was born.  From 2 lbs. 4 oz to 3 lbs. 14 oz.  What a BIG difference!

Mommy held him yesterday for a couple of hours.  Sean is learning how to suckle.  Since birth he has had  a feeding tube that supplies milk directly to his stomach.  This is how he has received his nutrition.  This will soon change.  He will eventually be bottle fed and fed by Mommy. 

Full term babies know how to suck & swallow.  Preterm babies learn how to suck...swallow...and then breathe.  The RN informed me that preterm babies learn how to suck first, but then they forget to swallow.  This can cause obvious problems.  One way they teach him how to do this is by sucking on a pacifier; which he has started to do.  Sean will eventually learn how to suck...swallow....(pause)....breathe. 

I spoke with the nurse this morning.  Sean had a good night.  He had an occasional DSAT.  He is at 28 - 30% oxygen.  He did not have any Apnea/Brady episodes last night! 

Today Sean will be having his second eye exam.  Please pray that they he will not be too uncomfortable (or in pain) during the eye exam and that we will receive good results.  We are praying that Sean's eyes continue to be healthy and that the extra oxygen they are giving him is not harming his eye site. 

Thank you for your continued prayers & support.
Sean's Mommy & Dadddy

Sean's Journey 8.8.11

I spoke with the nurse this morning.  Sean had a good night. 
Sean had some Apnea/Brady's/DSATs, but only a few.
He's at 30% oxygen. 

The nurse I spoke with last night said Sean had his eyes wide open and was looking around quite a bit. 

His feedings continue to go well.  He's now at 3 lbs. 14 oz! 

Please continue to pray for our baby boy.
Thank you!
Sean's Mommy & Daddy

Sean's Journey 8.7.11

Our baby boy now weighs 3 lbs. 12 oz!   He has had a good weekend. 
Mommy & Daddy went by to visit both Saturday & Sunday.  Mommy held him.  Daddy will hold him again soon.
Today was especially special because Mommy was able to hold Sean without the CPAP on his head. 
The CPAP makes holding him a little difficult at times because the prongs can become loose and Sean can begin to lose oxygen.
Today the Docs decided to do something new and instead of him having the "big" bulky CPAP on his head, they changed it for a nasal cannula (this will be used when we hold Sean).  It made holding him so much more pleasurable for both Mommy & Sean. 
Sean was way more comfortable!  And this made Mommy & Daddy very happy.  We really enjoyed our time with him today.  He was making sweet little baby sounds and he kept his eyes opened for us. 

Sean continues to tolerate his feedings.  36 cc's every 3 hours.

Sean continues to DSAT, but only occasionally.  He may have a Apnea/Brady episode from time to time, but nothing like a few weeks ago.  He breathes better on his own, but still needs the assistance of the CPAP machine.  His oxygen is at 28 - 30%.  The goal is that he will reach 21% (room air).

As far as the results of his eye test, the Doctor said his vision is immature.   The RN explained it this way...the musculature of Sean's eyes are not yet fully developed.  This is normal for Premies his age.  He will have another eye test this week. 

Please continue to pray for Sean's breathing, eating and vision. 

Thank you!
Sean's Mommy & Daddy

Sean's Journey 8.5.11

When I walked in to see Sean yesterday he was wearing his first piece of clothing.  A baby blue cardigan.  He looked so handsome for his Mommy.  I absolutely loved seeing him in clothes instead of just a diaper.  Our baby boy is growing.  He is precious and sweet. 

For the most part, Sean had a good day and night yesterday.  Apnea/Brady episodes are almost non-existent.  He contines to DSAT occasionally, but not very much compared to before.  His oxygen level is at 30%.  The goal is for him to get down to 21%.  Hopefully, in a couple more weeks. 

His feedings have been increased to 34 cc's every 3 hours.  He gained a little more weight.  He's now at 3 lbs. 11oz.!  Now that Sean has a little more "meat" on his tiny body, he is looking and feeling more like a baby. 

Thank you for your continued prayers for Sean. 
Sean's Mommy & Daddy

Sean's way of communicating

The RNs say Sean is a fiesty baby.  He lets them know when something is wrong.  He begins to DSAT (oxygen drops) or he moves around a lot.  This is his way to letting us all know he is uncomfortable. 

I don't like to leave the hospital if I notice Sean is uncomfortable.  Yesterday just before I left, Sean was moving around alot.  I knew he was trying to communicate something.  He is strong enough now to lift his head and upper body.  The RN checked his tiny diaper and sure enough it was wet!   Sean doesn't like wet or dirty diapers.  He also doesn't like laying in one position for too long.  We are all getting to know him. 

As soon as his diaper was changed, he was content and I was able to leave knowing he was comfortable.

Sean's Mommy

Sean's Journey 8.4.11

Sean had both his eyes checked yesterday.  We are still waiting on results.
Doctor mentioned that Sean's eyes are premature.  This is normal for preemies. 

Sean had a good day yesteday.  He did seem a little less active than normal, but I think it is because he was wiped out from his eye exam. 

Overnight, he had zero Apnea/Brady episodes.  He had occasional DSATs.  His oxygen level is at 30%, a little higher than normal, but again...I believe he is recovering from his eye exam.

Sean put on more weight!  He's at 3lbs. 10oz!  

Sean's Mommy & Daddy

Sean's Journey 8.3.11

Overall, Sean did well with his eye exam yesterday. 
The nurses had warned us about how uncomfortable it is for the babies to get this necessary test done, so we were not looking forward to it.  We don't know the results of the test yet, it takes a couple of days.  They were only able to test one of Sean's eyes (the right).  When Mommy went to see him yesterday his left eye was a swollen...probably because it was irritated from the test yesterday.   They will try to test the left eye again today.

It is so much fun holding Sean.  He has certainly grown over the last month.  Today he weighs 3 lbs. 8 oz.!
He had a good night last night.  The nurse gave him a bath.  She said he must have liked it because he slept all night.  He didn't have any Apnea/Brady episodes.  He still DSATs off and on.  His oxygen is at 25 - 30%. 

His feedings continue to go well.  He is eating 33 cc's every 3 hours. 

They removed the temperature probe yesterday, so he is now able to wear clothes.  He has been wearing only a diaper for the last month.  Last night after his bath, the nurse put a shirt on him.  Mommy will take more clothes for him to wear.  Our baby boy is growing... we love him so much. 

Please pray for his eye exam today and that he continues to do well with his feedings.  Please pray for his breathing and that he will continue to need less oxygen.  The goal is for him to be at 21% oxygen (room air). 

Thank you for your support & prayers,
Sean's Mommy & Dadddy

Sean will have his first eye exam today - Please pray for him

Today Sean will have his first eye exam.  These eye exams will be done once a week. 
Our hope is that Sean has no issues with his vision. 
The test will cause Sean discomfort, but it must be done. 

It's days like this that I wish Sean had been born full term.  If he was still in Mommy he wouldn't need to go through this type of testing, but we know it's necessary.  The most important thing is that his site is healthy.

Please pray for Sean's site to be healthy and that he doesn't suffer too much pain/discomfort during the testing. 

Sean's Mommy & Daddy

Sean's Journey 8.2.11

Sean had a good day yesterday and a good night.
He is having very few Apnea/Brady episodes.  He is DSATing a lot less.
His oxygen is at 28 - 30%.  The goal is that he will reach 21% (room air), but this may take a few more weeks.

His feedings continue to go well.  Today Sean weighs 3 lbs. 5oz!

Sean's Mommy & Daddy

Sean's Journey 8.1.11

Sean had a good day yesterday.  Daddy held Sean for about 2 hours.  Sean did great in Daddy's arms!

I spoke with the RN who had Sean all night.  She said he has improved quite a bit since she last saw him...a few days ago. 

Sean is now up to 30 cc's for his feedings. 

His oxygen is better.  He is at 26 - 28% oxygen. 
Hopefully soon....he will be off the bubble CPAP. 

Please continue to pray for our baby boy.

Sean's Mommy & Daddy