I gave him his 6pm feeding last night and he took 35 (of 50)cc for me. He's doing so great with learning how to bottle feed!! So proud of him.
 |
| No oxygen tube!!! |
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| Change is good for the soul!!! I'm loving it! |
Saturday, October 30
No oxygen-for the day
Last night B got his nose cannula taken out and was 100% on his own, no oxygen. He did great for about 12 hours and when we called this morning they said they put it back on at 3am to not stress him out too much. Steps forward, steps back. He looked really cute with his little face more exposed. Maybe we'll try without again in a few days.
I gave him his 6pm feeding last night and he took 35 (of 50)cc for me. He's doing so great with learning how to bottle feed!! So proud of him.
In other news....I'm a brunette now! I have ALWAYS been some form of blonde and have always wanted to go darker but was too chicken. Well, you only live once!
I gave him his 6pm feeding last night and he took 35 (of 50)cc for me. He's doing so great with learning how to bottle feed!! So proud of him.
Friday, October 29
Loving the bottle!
Brayden is doing great with bottle feeding!! He took 30cc (an ounce) for me last night and has consistently taken a good amount at his feedings. His only issue is staying awake. He gets tired and falls asleep...LOL. But we are so happy with his progress!
Maybe he wont need to go home with an NG tube (feeding tube) next month??
We are excited for B's first Halloween this weekend. I learned that if you wait till the last minute to get a costume you'll only have 2 choices but everything is on clearance!!! So B will be a pumpkin! The costume is a little big but we'll make it work.
I amfinally getting my hair done today. It's way over due!! Maybe will go dark?? You only live once right?
Maybe he wont need to go home with an NG tube (feeding tube) next month??
We are excited for B's first Halloween this weekend. I learned that if you wait till the last minute to get a costume you'll only have 2 choices but everything is on clearance!!! So B will be a pumpkin! The costume is a little big but we'll make it work.
I am
Wednesday, October 27
I heart K Care
Yesterday I was able to get back into Kangaroo Care with little man. I was (again) reminded how awesome this is for baby (and mom).
B has been having some tremors. A combination of Fentanyl (pain med) with-drawl and the tail end of the meningitis. The inflammation of the brain caused by the meningitis causes the tremors. I feel so sad watching him shake.
So yesterday we started K Care and it took him a while to settle down and rest but once he did, he didn't have a tremor for 2 hours while I was holding him. I'm so glad he was able to get some good rest. The tremors will stop once the meningitis is completely gone, they already get better each day.
In other news B started up the bottle feeding training last night. The nurse said he got 7cc down and he was stopping to breath (a big task for preemies). Hopefully we can get this bottle thing down and he (fingers crossed) wont come home with an NG tube (feeding tube). Even if he is taking half his feeding by bottle would be a blessing. Go little man!!
B is 2 months old today! He has gotten SO big!
B has been having some tremors. A combination of Fentanyl (pain med) with-drawl and the tail end of the meningitis. The inflammation of the brain caused by the meningitis causes the tremors. I feel so sad watching him shake.
So yesterday we started K Care and it took him a while to settle down and rest but once he did, he didn't have a tremor for 2 hours while I was holding him. I'm so glad he was able to get some good rest. The tremors will stop once the meningitis is completely gone, they already get better each day.
In other news B started up the bottle feeding training last night. The nurse said he got 7cc down and he was stopping to breath (a big task for preemies). Hopefully we can get this bottle thing down and he (fingers crossed) wont come home with an NG tube (feeding tube). Even if he is taking half his feeding by bottle would be a blessing. Go little man!!
B is 2 months old today! He has gotten SO big!
Tuesday, October 26
Back in the crib
B is having lots of steps in the right direction.
He is down to one IV line. He is up to 20cc of milk every 3 hours. They postponed his 24 hour EEG, the neurologist said it wasn't necessary right now.
They want him on his antibiotic for 6 weeks from the last negative culture (last Thursday). If he continues to do well and the only thing keeping him there is the antibiotic (he has to have it through an IV) they will send him home with the IV in. We would then have an in house nurse come a few times a week to check on him. Maybe by Thanksgiving then?
B got to move back to a big boy crib yesterday. He was in an open warmer for the time he was sick. it's easier access for the sick babies. We also got to hold him again...happy mom!!
He is down to one IV line. He is up to 20cc of milk every 3 hours. They postponed his 24 hour EEG, the neurologist said it wasn't necessary right now.
They want him on his antibiotic for 6 weeks from the last negative culture (last Thursday). If he continues to do well and the only thing keeping him there is the antibiotic (he has to have it through an IV) they will send him home with the IV in. We would then have an in house nurse come a few times a week to check on him. Maybe by Thanksgiving then?
B got to move back to a big boy crib yesterday. He was in an open warmer for the time he was sick. it's easier access for the sick babies. We also got to hold him again...happy mom!!
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| Starring at mom! |
Sunday, October 24
Tubes out-D's tattoo
Brayden got extubated (breathing tube out) yesterday! We are very excited as is he, he hated the tube!! It creates a lot of mucus and nasty stuff that just sits in the airway. It took him awhile to adjust to having it out and having the nose cannula back in but he got the hang of it and is doing well now.
They are slowly weening him off his Fentanyl (pain meds). Last time he had some with drawl symptoms so this time they are making sure to go slow.
They reviewed the spinal fluid and determined the bacteria they saw is dead bacteria and nothing has grown on the cultures...good news!! Looks like this infection is dead and B is on his way to his old self!
They scheduled his long EEG (brain wave scan) for Monday. I'm not sure how long it will be for. There was talk of 4 hours and 24 hours so we'll see.
He has started his feedings again and will slowly build back up to where he was before he got sick. So far so good and he is digesting everything.
We are so proud of our little guy, he has been through so much. We aren't sure how long he will be on antibiotic, which will determine how long he stays in the NICU but we know that he needs time to get better and I hope to have him home by my birthday (Dec 9). What a great b-day gift!
****
In other news....D's tattoo!
He has wanted a half sleeve for awhile now. Me as well, I love sleeves on men (if done right). Once B was born he had the perfect idea for his sleeve.
He wanted Buddhist Foo Lions. These are used outside of temples for protection. They are seen in pairs and the male rests his paw on an orb. The female accompanies the male to complete the pair. He found a (super talented) women and began working with her to draw it 3 weeks ago. She drew the Foo Lions with the male and female paws both touching the orb with Braydens foot print inside it. Essentially meaning Derek and I protecting him. Inside of his arm is the symbol for strength. Filling the extra space is wind bars, clouds, and water to add elements to it.
He went in for his first sitting to do the outline, Braydens feet will be added later. He has two more sittings to get shading and color added to complete the (half) sleeve. He hopes to be complete by Christmas!!
They are slowly weening him off his Fentanyl (pain meds). Last time he had some with drawl symptoms so this time they are making sure to go slow.
They reviewed the spinal fluid and determined the bacteria they saw is dead bacteria and nothing has grown on the cultures...good news!! Looks like this infection is dead and B is on his way to his old self!
They scheduled his long EEG (brain wave scan) for Monday. I'm not sure how long it will be for. There was talk of 4 hours and 24 hours so we'll see.
He has started his feedings again and will slowly build back up to where he was before he got sick. So far so good and he is digesting everything.
We are so proud of our little guy, he has been through so much. We aren't sure how long he will be on antibiotic, which will determine how long he stays in the NICU but we know that he needs time to get better and I hope to have him home by my birthday (Dec 9). What a great b-day gift!
****
In other news....D's tattoo!
He has wanted a half sleeve for awhile now. Me as well, I love sleeves on men (if done right). Once B was born he had the perfect idea for his sleeve.
He wanted Buddhist Foo Lions. These are used outside of temples for protection. They are seen in pairs and the male rests his paw on an orb. The female accompanies the male to complete the pair. He found a (super talented) women and began working with her to draw it 3 weeks ago. She drew the Foo Lions with the male and female paws both touching the orb with Braydens foot print inside it. Essentially meaning Derek and I protecting him. Inside of his arm is the symbol for strength. Filling the extra space is wind bars, clouds, and water to add elements to it.
He went in for his first sitting to do the outline, Braydens feet will be added later. He has two more sittings to get shading and color added to complete the (half) sleeve. He hopes to be complete by Christmas!!
Friday, October 22
Update-8 weeks old!!
Brayden got sick one week ago. This has been the hardest week of my life without a doubt....but we keep moving forward!
Little man is feeling much better. He is moving around more and less sensitive to touch. He had a LP (lumbar puncture) yesterday and they still see bacteria in the fluid so they switched to a different antibiotic. The theory is that the bacteria is 'smarter' and a different antibiotic is needed to kill it this time.
B will start his 24 hour EEG today. They hook him up to probes and place a camera by him. This will tell the neurologist exactly whats going on with his vital signs and brain waves.
They are hoping to extubate (take breathing tube out) this weekend. He needs to be more awake for this so they are slowly weening him off the Fentanyl (pain meds). He hates the tube so we hope to get it out as soon as we can.
He has a lot of Adema (fluid build up) due to not being very active. He's very puffy, poor little guy. Once he starts moving around more it will all go down.
We are going today to get him a Halloween costume. The NICU is very into dressing up the babies so we want B to look the part!! Last year they said the news came to see the cute Halloween babies.
In other news...Derek started his tattoo (half) sleeve yesterday. It looks great....more to come!
Little man is feeling much better. He is moving around more and less sensitive to touch. He had a LP (lumbar puncture) yesterday and they still see bacteria in the fluid so they switched to a different antibiotic. The theory is that the bacteria is 'smarter' and a different antibiotic is needed to kill it this time.
B will start his 24 hour EEG today. They hook him up to probes and place a camera by him. This will tell the neurologist exactly whats going on with his vital signs and brain waves.
They are hoping to extubate (take breathing tube out) this weekend. He needs to be more awake for this so they are slowly weening him off the Fentanyl (pain meds). He hates the tube so we hope to get it out as soon as we can.
He has a lot of Adema (fluid build up) due to not being very active. He's very puffy, poor little guy. Once he starts moving around more it will all go down.
We are going today to get him a Halloween costume. The NICU is very into dressing up the babies so we want B to look the part!! Last year they said the news came to see the cute Halloween babies.
In other news...Derek started his tattoo (half) sleeve yesterday. It looks great....more to come!
Tuesday, October 19
Progress is progress
Brayden is slowly getting better. He is making small steps in the right direction.
He had a few more seizures yesterday and they started him a new seizure medication, Keppra. He is currently on Phenobar and Keppra. They tried to start him back on the Dilantin that he was on the first time he got sick and right when they administered it the IV line disintegrated and gave him a chemical burn on his leg. They immediately stopped injecting it and decided not to give him this drug again. Poor little guys leg but it will heal. PS, I hate this drug!!
His ventilator (breathing tube) settings keep going lower and his oxygen support level too. All signs of improvement.
He is less sedated this time around. Before he was pretty much totally out of it for 10 days. This time he is moving a little and started opening his eyes yesterday.
He is still very sensitive to touch. The meningitis makes your brain hyper sensitive which is also why he is having the seizures.
When he is more stable, today or tomorrow, they will do another spinal tap to test if the bacteria is gone or going down considerably. They drew blood on Saturday (day 2 of antibiotic) to test for bacteria and nothing has grown on the cultures so it's gone from his blood.
The infectious disease Dr determined this is the same exact strain of bacteria from the first time he was sick. The Dr's are all trying to figure out how it came back and where it was hiding in his body. He was off antibiotic for 2 weeks with no signs of infection and his CT scan was clear. They are thinking Brayden has a small clot that was hiding the bacteria causing it to fester for 2 weeks off antibiotic. He had an Echocardiogram yesterday to see if it's by his heart and if that's clear they want to do an MRI to see if it's in the brain.
It's common for preemies to get sick, not as common to get e coli meningitis, and to get it TWICE is very rare. The Dr's seem very eager to figure this out since it's pretty baffling.
We aren't sure what the length of antibiotic treatment will be this time around (it was 4 weeks last time) but we are looking at much longer to make sure this bacteria is 100% gone. I'm trying not to focus on how long we will all be here, it's too overwhelming. Focusing on day by day makes it much easier.
He had a few more seizures yesterday and they started him a new seizure medication, Keppra. He is currently on Phenobar and Keppra. They tried to start him back on the Dilantin that he was on the first time he got sick and right when they administered it the IV line disintegrated and gave him a chemical burn on his leg. They immediately stopped injecting it and decided not to give him this drug again. Poor little guys leg but it will heal. PS, I hate this drug!!
His ventilator (breathing tube) settings keep going lower and his oxygen support level too. All signs of improvement.
He is less sedated this time around. Before he was pretty much totally out of it for 10 days. This time he is moving a little and started opening his eyes yesterday.
He is still very sensitive to touch. The meningitis makes your brain hyper sensitive which is also why he is having the seizures.
When he is more stable, today or tomorrow, they will do another spinal tap to test if the bacteria is gone or going down considerably. They drew blood on Saturday (day 2 of antibiotic) to test for bacteria and nothing has grown on the cultures so it's gone from his blood.
The infectious disease Dr determined this is the same exact strain of bacteria from the first time he was sick. The Dr's are all trying to figure out how it came back and where it was hiding in his body. He was off antibiotic for 2 weeks with no signs of infection and his CT scan was clear. They are thinking Brayden has a small clot that was hiding the bacteria causing it to fester for 2 weeks off antibiotic. He had an Echocardiogram yesterday to see if it's by his heart and if that's clear they want to do an MRI to see if it's in the brain.
It's common for preemies to get sick, not as common to get e coli meningitis, and to get it TWICE is very rare. The Dr's seem very eager to figure this out since it's pretty baffling.
We aren't sure what the length of antibiotic treatment will be this time around (it was 4 weeks last time) but we are looking at much longer to make sure this bacteria is 100% gone. I'm trying not to focus on how long we will all be here, it's too overwhelming. Focusing on day by day makes it much easier.
Monday, October 18
Deja Vu
Kelle Hampton posted something on her blog this morning I thought was perfect.
When you have a moment of deja vu, it means you are exactly where you are supposed to be in life; that, somehow, if you feel like you've lived through a moment in life before, it has to mean the universe is letting you know you should be living that moment.
This is exactly how we have felt the last 3 days...like we are living in deja vu of 6 weeks ago when Brayden first got sick. Everything from the day of the week (Friday), to the nurse working (Vicki), to the illness, to the symptoms, and seizures.
Right now it still feels like a crazy nightmare but I know in all this there is purpose. We are where we are suppose to be, I'm just not sure why.
The last 3 days I have been in a really low place, I hate this place. In all the sadness and hurt there is always hope. Hope that he will (once again) pull through and be home with us. Today there is still so much hurt but the heaviness is lifting.
I'm not sure how I got through this the first time but somehow I did and I am ready to do it again. I am prepared to do what I have to do as a mom. This is my job now and I will keep moving forward and doing what I need to for him.
It's so disheartening to watch your son go through this and know that he will be in this stressful place for another 5+ weeks, that we will be in this place. We had 'one foot out the door' with talks of going home and now it's back to square one. This will all not magically end once B is home, we have a long road road of recovery, but at least we will all be home!
Brayden is stable and making slow progress. The first 48 hours are the most critical and he pulled through like a champ. I am so envious at his strength and fight. He still has a long way to go but we'll take the progress.
Thank you for all the comments, prayers, texts, and emails. They help us more than you know!!
When you have a moment of deja vu, it means you are exactly where you are supposed to be in life; that, somehow, if you feel like you've lived through a moment in life before, it has to mean the universe is letting you know you should be living that moment.
This is exactly how we have felt the last 3 days...like we are living in deja vu of 6 weeks ago when Brayden first got sick. Everything from the day of the week (Friday), to the nurse working (Vicki), to the illness, to the symptoms, and seizures.
Right now it still feels like a crazy nightmare but I know in all this there is purpose. We are where we are suppose to be, I'm just not sure why.
The last 3 days I have been in a really low place, I hate this place. In all the sadness and hurt there is always hope. Hope that he will (once again) pull through and be home with us. Today there is still so much hurt but the heaviness is lifting.
I'm not sure how I got through this the first time but somehow I did and I am ready to do it again. I am prepared to do what I have to do as a mom. This is my job now and I will keep moving forward and doing what I need to for him.
It's so disheartening to watch your son go through this and know that he will be in this stressful place for another 5+ weeks, that we will be in this place. We had 'one foot out the door' with talks of going home and now it's back to square one. This will all not magically end once B is home, we have a long road road of recovery, but at least we will all be home!
Brayden is stable and making slow progress. The first 48 hours are the most critical and he pulled through like a champ. I am so envious at his strength and fight. He still has a long way to go but we'll take the progress.
Thank you for all the comments, prayers, texts, and emails. They help us more than you know!!
Sunday, October 17
Happy 1 Year Anniversary
One year ago today Derek and I were in beautiful Maui Hawaii getting married.
I can't believe it's been a year already. We have had a year full of ups and downs and have endured more as 'newlyweds' than most couples do in 10 years.This has been the happiest and hardest year of my life with the surprise news we were going to be parents and then the early arrival of our son. I could not have gotten through any of it with out my rock, D. Marriage alone is hard work and this year we have continued to stay grounded and partner with each other. I would not change one minute of it.
Here are some highlights of our first year married...
November
We had a big Reception for all the family and friends who couldn't make it to Hawaii for the wedding. It was such a great party!!
December
Our beautiful niece Zoe was born (12.23.09)
January
Rang in 2010 with good friends!
We spent every weekend visiting Zoe, so fun to watch her grow! I also chopped my hair off!
February
We did a couple's weekend workshop for Valentine's weekend. So very cool!
Finished the 30 Day Shred and dropped 8 lbs...whoo hoo!!
D had a boys weekend fishing trip in upper Wisconsin and I had a massage day with my mom!
March
Zoe is growing like a weed. We love watching her grow and change.
(10 weeks old)Found out we are PREGNANT!!
AprilWE MOVED!!!
We went from downtown Chicago to the north suburbs to be closer to work. Loving it up here!!
May
We entered the 2nd trimester!!
June
Happy 28th B-day to D!!
Found out we are having a BOY!!! Brayden James Helvey!
D finished his 1st triathlon!!
JulyFamily Reunion trip to Arkansas!!! HOTTEST week ever!!
Painted the nursery and the nesting began!
August
SURPRISE....Brayden came 12 weeks early!
August 27th 2010
2lb 14oz
15.75"
28w1d gestation
He was immediately taken to Loyola NICU and our long journey began!
September
At 7 days old Brayden got sick, really sick. He fought hard for 10 days and finally started to come out of it. He went up from there and kept (keeps) growing!
October
At the beginning of Oct he is 4.5 lbs!
2 days ago (15th) he got sick again. He has another fight to go but he is strong little man!!
We still have a long road of ups and downs ahead of us but we are dreaming of the day we can take him home with us!
D,
Thank you for being my rock, my shoulder, my audience, my partner, and my friend. You are so amazing and are the best father in the world. Brayden and I are so lucky to have you in our lives. I love you!
Happy Anniversary!!
Saturday, October 16
Brayden Update-sick again!
D here:
A lot has changed since Heather last posted a few days ago. Brayden has unfortunately taken a few steps backwards and is not doing that well.
The hospital called on Friday morning (around 1:00 am) and said that Brayden needed to be re-intubated due to chronic heart rate drops (bradycardia) and apnea spells. They were not sure if it was a severe case of reflux or something more concerning. So, Heather and I decided to go in and be with him, being that we were staying at the Ronald McDonald House about a mile away.
We stayed with Brayden for a couple hours and left him when he was stable, thinking he would be extubated (breathing tube taken out) once he had some time to catch up and be fine. Unfortunately, when we called a few hours later to check on him, things had changed for the worse. He had some seizure activity and his blood levels were down. All signs of an infection but the doctors still were not exactly sure what was going on. This is not what we wanted to hear, we had been so close to taking him home and leaving this behind! But instead things just kept going downhill.
Yesterday afternoon we found out that he has meningitis, again! They are not sure if this is a relapse from the first round or a different strain but either way he has to go through another round of antibiotics to treat it. He is basically back to square one and a lot of the progress he made in the last 6 weeks has been wiped. He has the whole nine yards back like before: IV lines, artery lines, blood transfusions, fentynal (pain med), sedation, and is now feed through the IV line.
They also took a head ultrasound to see if any of this activity has been due to the intravehicular hemmoraging that he suffered early on. They found that the bleeding had subsided but there was still a moderate amount of fluid in the ducts. It is not of to much concern now but may be down the road in his development. They will continure to watch and if it worsens they will put in a shunt and drain the fluid.
Unfortunately, this all came on a weekend that we had planned Heather's baby shower with my side of the family. As much as she wanted to be there, it was to hard for her to leave and she missed the shower today (Saturday).
Also tomorrow, Sunday the 17th, is our 1 year wedding anniversary! I cannot believe it has been a year. We have done and gone through so much together in the last 365 days! I cannot wait to spend so many more with her and look forward to them all!
Needless to say but the last 48 hours has been very hard on all of us. Brayden has been pretty stable and has not had a seizure since 9:00 am this morning (Saturday) but is still very twitchy and sensitive to noise. Heather and I trying our best to stay positive but are really hurting right now. We are hurting so bad for our son and don't want to watch him go through this again! But with the support of our family, friends, nurses, and doctors we are hoping that Brayden can pull through this, again.
Thank you for your continued prayers, support, and love!
D.
A lot has changed since Heather last posted a few days ago. Brayden has unfortunately taken a few steps backwards and is not doing that well.
The hospital called on Friday morning (around 1:00 am) and said that Brayden needed to be re-intubated due to chronic heart rate drops (bradycardia) and apnea spells. They were not sure if it was a severe case of reflux or something more concerning. So, Heather and I decided to go in and be with him, being that we were staying at the Ronald McDonald House about a mile away.
We stayed with Brayden for a couple hours and left him when he was stable, thinking he would be extubated (breathing tube taken out) once he had some time to catch up and be fine. Unfortunately, when we called a few hours later to check on him, things had changed for the worse. He had some seizure activity and his blood levels were down. All signs of an infection but the doctors still were not exactly sure what was going on. This is not what we wanted to hear, we had been so close to taking him home and leaving this behind! But instead things just kept going downhill.
Yesterday afternoon we found out that he has meningitis, again! They are not sure if this is a relapse from the first round or a different strain but either way he has to go through another round of antibiotics to treat it. He is basically back to square one and a lot of the progress he made in the last 6 weeks has been wiped. He has the whole nine yards back like before: IV lines, artery lines, blood transfusions, fentynal (pain med), sedation, and is now feed through the IV line.
They also took a head ultrasound to see if any of this activity has been due to the intravehicular hemmoraging that he suffered early on. They found that the bleeding had subsided but there was still a moderate amount of fluid in the ducts. It is not of to much concern now but may be down the road in his development. They will continure to watch and if it worsens they will put in a shunt and drain the fluid.
Unfortunately, this all came on a weekend that we had planned Heather's baby shower with my side of the family. As much as she wanted to be there, it was to hard for her to leave and she missed the shower today (Saturday).
Also tomorrow, Sunday the 17th, is our 1 year wedding anniversary! I cannot believe it has been a year. We have done and gone through so much together in the last 365 days! I cannot wait to spend so many more with her and look forward to them all!
Needless to say but the last 48 hours has been very hard on all of us. Brayden has been pretty stable and has not had a seizure since 9:00 am this morning (Saturday) but is still very twitchy and sensitive to noise. Heather and I trying our best to stay positive but are really hurting right now. We are hurting so bad for our son and don't want to watch him go through this again! But with the support of our family, friends, nurses, and doctors we are hoping that Brayden can pull through this, again.
Thank you for your continued prayers, support, and love!
D.
Thursday, October 14
I never had a cause...
...until B was born!
I have never had a cause/organization that I was really gung-ho about. I had things I cared about but nothing that I was passionate about. That all changed when my preemie was born and we found March of Dimes. To be honest I never really knew what March of Dimes was, I knew it had something to do with babies but never gave it a second thought. Come to find out it is a fantastic organization all for preemies and healthy babies...I found my cause!
Every time I get asked if I 'want to donate to March of Dimes' at checkout I always say yes now when before I would cut them off before they were done with there sh-peal and say NO!
I guess circumstance brings you in certain directions on purpose. I always wanted some thing I really cared about like this that I could give back to. We are planning to do the yearly March for Babies walk and raise some money to donate. I can't wait to do this walk with B, with a proud face for my preemie.
D and I have learned so much about something we never gave a second thought to. It maybe crossed my mind for 1 second when I was pregnant that I could have him early! I had seen preemie clothes and thought how cute and small they were, little did I know that my son would own quite a few of them. If I would have known that 1 in 10 babies were born early I would have given more thought to it. I was shocked to learn that 10% of babies are preemies. I always thought it was 'something that happened to other people'. Being surrounded by tiny babies in the NICU makes it more apparent that it's quite common.
I can't go back and honestly if given the chance I wouldn't. Everything happens for a reason and my son is perfect in every way to me...we just had a different journey getting him home.
I have never had a cause/organization that I was really gung-ho about. I had things I cared about but nothing that I was passionate about. That all changed when my preemie was born and we found March of Dimes. To be honest I never really knew what March of Dimes was, I knew it had something to do with babies but never gave it a second thought. Come to find out it is a fantastic organization all for preemies and healthy babies...I found my cause!
Every time I get asked if I 'want to donate to March of Dimes' at checkout I always say yes now when before I would cut them off before they were done with there sh-peal and say NO!
I guess circumstance brings you in certain directions on purpose. I always wanted some thing I really cared about like this that I could give back to. We are planning to do the yearly March for Babies walk and raise some money to donate. I can't wait to do this walk with B, with a proud face for my preemie.
D and I have learned so much about something we never gave a second thought to. It maybe crossed my mind for 1 second when I was pregnant that I could have him early! I had seen preemie clothes and thought how cute and small they were, little did I know that my son would own quite a few of them. If I would have known that 1 in 10 babies were born early I would have given more thought to it. I was shocked to learn that 10% of babies are preemies. I always thought it was 'something that happened to other people'. Being surrounded by tiny babies in the NICU makes it more apparent that it's quite common.
I can't go back and honestly if given the chance I wouldn't. Everything happens for a reason and my son is perfect in every way to me...we just had a different journey getting him home.
Wednesday, October 13
Big Boy Bed!!!
Last night D and I helped move Brayden to his new big boy bed (aka the plastic bassinet). They either use cribs or these bassinets for the 'big kids'. He doesn't have a lot of wires so he is fine in this smaller one.
He had his 'test run' over night to make sure his temperature stayed OK and when we called this morning they said he was actually on the hotter side and they had to use a thinner blanket...whoo hoo...looks like we are staying in the big boy bed!!!
It is so nice to have him out of 'the box' and into this bed. It's much easier for us to take him in and out and do all his changing. One step closer to home!
Yesterday we also tried breast feeding for the first time. His speech therapist said we can try once a day as well as try the bottle once a day. The breast feeding went pretty good. I sat with a lactation consultant and she walked me through it. Even though I read up on breast feeding while pregnant teaching a preemie to do it is a whole other ball game. B did as good as could be expected. He was interested and awake and did some good sucking. After about 5 minutes he fell asleep, preemies way of saying that's enough for today. He did a great job and I was so happy to finally try it!!!
B has another head ultra sound scheduled for Monday (18th) to see how his bleeds are doing. I always get nervous before these. We are always afraid they will give us bad news. The Dr's told us they have no reason to believe they will get a surprise on the u/s but they need to keep checking that the bleeds are healing properly. I guess we just hold our breath till then! They also anticipate B will get an MRI before he is discharged to asses his head further. We shall see...one day at a time!
He had his 'test run' over night to make sure his temperature stayed OK and when we called this morning they said he was actually on the hotter side and they had to use a thinner blanket...whoo hoo...looks like we are staying in the big boy bed!!!
It is so nice to have him out of 'the box' and into this bed. It's much easier for us to take him in and out and do all his changing. One step closer to home!
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| After we took this pic we added all his goodies to his new bed...b&w pictures, name badge, ect to make it homier. |
Yesterday we also tried breast feeding for the first time. His speech therapist said we can try once a day as well as try the bottle once a day. The breast feeding went pretty good. I sat with a lactation consultant and she walked me through it. Even though I read up on breast feeding while pregnant teaching a preemie to do it is a whole other ball game. B did as good as could be expected. He was interested and awake and did some good sucking. After about 5 minutes he fell asleep, preemies way of saying that's enough for today. He did a great job and I was so happy to finally try it!!!
B has another head ultra sound scheduled for Monday (18th) to see how his bleeds are doing. I always get nervous before these. We are always afraid they will give us bad news. The Dr's told us they have no reason to believe they will get a surprise on the u/s but they need to keep checking that the bleeds are healing properly. I guess we just hold our breath till then! They also anticipate B will get an MRI before he is discharged to asses his head further. We shall see...one day at a time!
Tuesday, October 12
4 oz in two days
Yes....B gained 4oz in two days?? That's crazy to me!
He weighs 4lbs 15oz.
He had his CBC (blood test) yesterday and everything looked good. He does not need any blood and will most likely not need any while he's here.
The Dr said he will get a big boy crib sometime this week. We are excited to have him out of his box!!
He really has change so much. He's gone from a frail preemie to an (almost) newborn size with little fat rolls and all!! They up'd his feeding to 45cc every 3 hours.
With the possibility of him coming home fairly soon it brings up a whole new set of emotions. Excited to have my little man home with us. Scared to be out of the 'safety' of the NICU. He is certainly more fragile than a full term baby and will be hibernating inside for a while to avoid any germs but we are ready to be full time parents. Like all new parents we are stepping out into the great unknown. We have been lucky to get to know him and learn how to care for him before he even gets home...it still is scary! We are certainlyalmost ready!!
He weighs 4lbs 15oz.
He had his CBC (blood test) yesterday and everything looked good. He does not need any blood and will most likely not need any while he's here.
The Dr said he will get a big boy crib sometime this week. We are excited to have him out of his box!!
He really has change so much. He's gone from a frail preemie to an (almost) newborn size with little fat rolls and all!! They up'd his feeding to 45cc every 3 hours.
With the possibility of him coming home fairly soon it brings up a whole new set of emotions. Excited to have my little man home with us. Scared to be out of the 'safety' of the NICU. He is certainly more fragile than a full term baby and will be hibernating inside for a while to avoid any germs but we are ready to be full time parents. Like all new parents we are stepping out into the great unknown. We have been lucky to get to know him and learn how to care for him before he even gets home...it still is scary! We are certainly
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| His cheeks and his lips...I die!!! So adorable! |
He loves his paci....a big step for preemies and for eating (soon)!!
Please excuse the baby talk in the video...unfortunately it just happens the minute you become a parent!!!
Sunday, October 10
Getting Big!!
Brayden is....
4 lbs 11oz
17 3/4"
Getting so big....and long! He is too long for most preemie clothes.
He is doing well. Monday he will have another CBC (blood test) to check his blood count levels to see if his body is making blood cells fast enough. There is a possibility he may need blood but they hope not. Getting blood basically restarts the system from producing it on it's own. It helps them out now but later on there is more risk for low counts and anemia so hopefully little man is making enough.
He is up to 40cc every 3 hours of milk (30cc is an ounce) and keeping it down well. Speech is still working with him on feeding. He is slowly getting it!!
I had my 6 week check up with my midwife yesterday and everything looks good from my end. I lost 13 of the 23 I gained.....10 to go!!! Even though I am back in pre-preggo size (yay) I still have the stuff around the middle that likes to hang around after baby!! So worth it but time to work it off!
The doctors told us there goal is to have him home by November (37 weeks gestation). He may require a feeding tube and apnea machine but we would learn how to use it all. It's exciting and scary to think about having him home. We are praying there are no set backs and that he will be with us soon.
4 lbs 11oz
17 3/4"
Getting so big....and long! He is too long for most preemie clothes.
He is doing well. Monday he will have another CBC (blood test) to check his blood count levels to see if his body is making blood cells fast enough. There is a possibility he may need blood but they hope not. Getting blood basically restarts the system from producing it on it's own. It helps them out now but later on there is more risk for low counts and anemia so hopefully little man is making enough.
He is up to 40cc every 3 hours of milk (30cc is an ounce) and keeping it down well. Speech is still working with him on feeding. He is slowly getting it!!
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| Sleeping on mom...shortly after I spit up on her :-) but she doesn't mind!! |
I had my 6 week check up with my midwife yesterday and everything looks good from my end. I lost 13 of the 23 I gained.....10 to go!!! Even though I am back in pre-preggo size (yay) I still have the stuff around the middle that likes to hang around after baby!! So worth it but time to work it off!
The doctors told us there goal is to have him home by November (37 weeks gestation). He may require a feeding tube and apnea machine but we would learn how to use it all. It's exciting and scary to think about having him home. We are praying there are no set backs and that he will be with us soon.
Friday, October 8
Update
B's weight is 4lb 8.5oz. He is steadily going up which is exactly what he is suppose to be doing.
They measure his length on Fridays so I'm curious as to what it is today. He is getting much longer. We ordered him some NICU preemie clothes that are way to small now. We donated them to the NICU for other families to use. His normal preemie size clothes are just perfect now!!
Last night D and I gave him a bath and he liked it this time. It's so fun and rewarding for us to be able to give him all this care.
B has been working with the speech therapist with his feedings every other day and still doesn't seem to interested. He is still young as far as feedings go so hopefully he decides its a good thing soon.
He has been on his reflux medicine for a few days and seems much more comfortable now. This is another medicine he will most likely go home with. Luckily all the meds he will need when he's home are oral that we can give him in his bottles.
They measure his length on Fridays so I'm curious as to what it is today. He is getting much longer. We ordered him some NICU preemie clothes that are way to small now. We donated them to the NICU for other families to use. His normal preemie size clothes are just perfect now!!
Last night D and I gave him a bath and he liked it this time. It's so fun and rewarding for us to be able to give him all this care.
B has been working with the speech therapist with his feedings every other day and still doesn't seem to interested. He is still young as far as feedings go so hopefully he decides its a good thing soon.
He has been on his reflux medicine for a few days and seems much more comfortable now. This is another medicine he will most likely go home with. Luckily all the meds he will need when he's home are oral that we can give him in his bottles.
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| He is so stinking cute in his little clothes! |
Thursday, October 7
We miss Bella
Since D and I have been staying down by the hospital my parents have been taking care of our first child dog Bella. She loves my parents and gets along great with there 3 cats, yes 3, it's a zoo there!! LOL. She is doing fantastic but we miss her terribly.
We see her a few times a week and she gets SO excited! Wagging her tail and bringing us toys. She always seems sad when we leave. It breaks my heart not to have our fur baby with us but we are making the best of our situation and soon we will have asemi normal routine again with her right along with us. Hopefully she likes her new brother! She is very curious about the items of his from the hospital we bring for her to smell, he knows something is up.
My parents send us pics and video all the time, got to love the iPhones!! We love that we can keep updated on her.
Here is a cute video my step dad sent us of Bella doing what she loves, playing with her toys.
We see her a few times a week and she gets SO excited! Wagging her tail and bringing us toys. She always seems sad when we leave. It breaks my heart not to have our fur baby with us but we are making the best of our situation and soon we will have a
My parents send us pics and video all the time, got to love the iPhones!! We love that we can keep updated on her.
Here is a cute video my step dad sent us of Bella doing what she loves, playing with her toys.
Wednesday, October 6
Update
I can't get over how big our little man is getting. 4lb 7oz! Growing like a weed and we love it!!
He is doing well. He has been getting uncomfortable after he eats so they started him on a reflux medicine to help ease the burning a bit. Reflux can cause preemies to have high respiratory rate and lower oxygen saturation, which he shows signs of so hopefully this ends that too.
He is now getting 37cc of milk every 3 hours. He has been working with a speech therapist every day so far to help him learn how to use a bottle. It's going slowly but learning is part of the process.
His NICU preemie clothes are almost to small!!! I can't believe it. I guess I learned the hard way how fast babies grow out of things. Next time...buy a size up!!
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One of my fave bloggers Kristen at K's Little Law just opened an Esty shop and made us this adorable image we are having printed and framed for his room.
He is doing well. He has been getting uncomfortable after he eats so they started him on a reflux medicine to help ease the burning a bit. Reflux can cause preemies to have high respiratory rate and lower oxygen saturation, which he shows signs of so hopefully this ends that too.
He is now getting 37cc of milk every 3 hours. He has been working with a speech therapist every day so far to help him learn how to use a bottle. It's going slowly but learning is part of the process.
His NICU preemie clothes are almost to small!!! I can't believe it. I guess I learned the hard way how fast babies grow out of things. Next time...buy a size up!!
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One of my fave bloggers Kristen at K's Little Law just opened an Esty shop and made us this adorable image we are having printed and framed for his room.
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| visit her shop here |
Tuesday, October 5
Baby Shower (#1)
Sunday (Oct 3) I had my first baby shower! My mom, her good friend Marcy, and Marcy's daughter Jen hosted it for me. It was such a great day to celebrate our little man!
We got so many great things for Brayden. I can't wait to get him home toplay dress up try them out!! Derek and I are truly blessed to have so many people who care about us. We felt so celebrated.
We got so many great things for Brayden. I can't wait to get him home to
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| Love this cookie bouquet!! |
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| All the little place cards matched! |
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| Yum Yum Yum |
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| Favors!! Bamboo is my fave! |
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| Center pieces with pictures of our little man. |
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| My favorite outfit so far, super cute little polo sweat suit! I can't wait to show it off....assuming he doesn't puke on it before we leave the house LOL! |
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| D came at the end to help me open gifts. |
Monday, October 4
Brayden Update
After the baby shower yesterday we headed to the hospital to see B and he is doing great!!
They took his IV line (pcvc line) out!! His remaining meds (phenobar and caffeine) he will get orally. This a big step, we are very happy!
He has reached his goal feeding amount of 35cc every 3 hours which is a little over an ounce each feeding. There is fortifier added to my milk for some extra calories and he gets a vitamin orally once a day.
His weight is 4lb 6.5 oz...getting big!! Length is 17 inches!
I got to weigh him last night and after we stripped him down he decided to pee all over himself. It was pretty funny, we got a good laugh!
The baby shower was awesome!! We got some great goodies for B. We are anxious to get him home to play with all of them. Our second shower is in 2 weeks and B will be even more spoiled!! We are so grateful and blessed!
They took his IV line (pcvc line) out!! His remaining meds (phenobar and caffeine) he will get orally. This a big step, we are very happy!
He has reached his goal feeding amount of 35cc every 3 hours which is a little over an ounce each feeding. There is fortifier added to my milk for some extra calories and he gets a vitamin orally once a day.
His weight is 4lb 6.5 oz...getting big!! Length is 17 inches!
I got to weigh him last night and after we stripped him down he decided to pee all over himself. It was pretty funny, we got a good laugh!
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| Wearing my big boy preemie clothes! He is so long for his age that they are almost too short. We will stick to clothes with no feet! |
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| Wide awake!! |
The baby shower was awesome!! We got some great goodies for B. We are anxious to get him home to play with all of them. Our second shower is in 2 weeks and B will be even more spoiled!! We are so grateful and blessed!
Sunday, October 3
B's first bottle
Last night one of our fave nurses Chris was working and she thought it was time to try the bottle, the Dr agreed so we gave it a go. I wasn't expecting to do this until next week so I was super excited to try it early.
Chris walked me through it and B did great!! He wasn't so sure about it and had trouble swallowing but just him trying made us so happy. He took a few good swallows and got about 5cc down. He had a few Bradycardias from the liquid, when preemies have liquid in there throat (spit, spitup, milk) it can cause a heart rate drop when they don't swallow it. It's completely normal and the nurse was watching the whole time.
It will take him a while to get the suck, swallow, breath thing down but practice will make perfect and soon he will be bottle feeding like a pro!!
It was so cool for us to watch, he was so awake the whole time talking to us with his eyes. Mom and dad are proud!
Chris walked me through it and B did great!! He wasn't so sure about it and had trouble swallowing but just him trying made us so happy. He took a few good swallows and got about 5cc down. He had a few Bradycardias from the liquid, when preemies have liquid in there throat (spit, spitup, milk) it can cause a heart rate drop when they don't swallow it. It's completely normal and the nurse was watching the whole time.
It will take him a while to get the suck, swallow, breath thing down but practice will make perfect and soon he will be bottle feeding like a pro!!
It was so cool for us to watch, he was so awake the whole time talking to us with his eyes. Mom and dad are proud!
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| Passed out during Kangaroo Care!! |
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