Ramsey had to remain at 45 ml today for his bottle feeding. He had seemed to tire so much from the slow-flow nipple so we tried the regular flow but it was a bit too fast for him. Ultimately, he left 15 ml in his first bottle. During his 2nd bottle, he cried so much he only drank 20 ml. This continued until his 9 pm feeding when he finally drank the whole bottle! I think he was dealing with a few problems today that just made him not want to eat; he has thrush, he was gassy and he had reflux.
I hope this isn't a sign of things to come! 45 ml is right around 1.5 ounces and I was told that this is the point where problems can arise. It might be good that he knows when to quit, even if it's sooner than what we want him to so that he doesn't aspirate. So much for my 4 day countdown to 65 ml! I guess this is why you never know just how long it will take till discharge.
We will go home with a monitor which will be a great relief to us. At least then we will know if there are any problems. They will also do a car seat test to see how well he does in the seated position for the drive home. When his oxygen dropped the other night, he was actually in his bouncy seat.
Ramsey had his weekly bloodwork early this morning and the billirubin is finally lower! I need to see how far we have to go to be in the normal range but I am glad that we are finally heading in the right direction.
The Alpha-1 antitrypsin test was just outside of the normal range on the higher end of the scale. I haven't discussed it yet with intestinal care, but I've been told that if there were a problem, it would have been on the lower range. So it appears we don't need to be concerned about that.
Monday, February 28, 2011
Sunday, February 27, 2011
Sunday - Day 46
Ramsey's oxygen was removed early this morning. He took his bottles well! If he keeps it up we should be at our goal in just 4 days!!
Sorry it has been so long since I posted photos. I will work on some new ones of Ramsey this week. The first two, below, were taken today and that is why the nasal canula is still there. These are some more "firsts" as family and friends get to hold Ramsey in their arms.
Sorry it has been so long since I posted photos. I will work on some new ones of Ramsey this week. The first two, below, were taken today and that is why the nasal canula is still there. These are some more "firsts" as family and friends get to hold Ramsey in their arms.
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| Pappy Razza and Ramsey |
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| Aunt Dina and Ramsey |
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| Aunt Donna and Ramsey |
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| Uncle Alan and Ramsey |
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| Alan, Elaine, Denise and Ramsey |
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| Cathy, a loyal blog follower and friend with Ramsey |
Sunday Morning
Based on last night's X-Ray, Ramsey had a little extra fluid, but not much as he had during his stay in the NICU. Today, they will wean him back off the oxygen. Tomorrow, they will do an X-Ray to make sure the lasix have done their job. Apparently once he's 2-3 months old, we shouldn't have to worry about this happening again.
Today they will increase his bottle to 45 ml.
Today they will increase his bottle to 45 ml.
Saturday, February 26, 2011
Boring is Good
In the hospital world, we've come to learn that boring is good. Ramsey hasn't learned that yet, and tonight he decided to shake things up a bit. His oxygen dropped to around 85, so they put the nasal canula back in and did an X-Ray. The X-Ray showed that he is retaining fluid so they decided to give him lasix again. This is nothing new, we experienced this in the NICU, still it's too bad that we had to experience it again at this stage. This type of incident makes the thought of taking him home a bit unnerving because there were no signs of problems, except for the numbers on the monitors.
He took 40 ml for each bottle today. He handled it well, aside from tiring a bit.
He took 40 ml for each bottle today. He handled it well, aside from tiring a bit.
Friday, February 25, 2011
Friday Night
Ramsey's bottle was increased by 5 ml for a total of 35 ml. This allowed his bolus to be reduced to 30 ml. He took each of his bottles well, except for one of the first ones; I tried to burp him halfway through and he lost all interest in finishing it. It took awhile, but he eventually drank it all. It's possible that he could reach a plateau when it comes to the bottle...I hope not! I pray he can reach his goal of 65 ml and gain the weight he needs in order to go home!
Thursday, February 24, 2011
Thursday Night
Ramsey had a great day. He is taking 30 ml by bottle and 30 by bolus. His weight was down last night so they started fortifying his milk to add calories. Hopefully we will move up to 40 ml tomorrow!
Wednesday, February 23, 2011
Wednesday Update - Day 42
Ramsey is doing surprisingly well with his feedings. Every three hours he received 20 ml by bottle followed by 45 ml by through his NG tube. Speech and OT supervised the first two, but I was able to offer the rest on my own. It was discovered today that his tube was in his intestines instead of his stomach so they put a new one into the stomach.
His billirubin is steady...not any worse but not any better. To clarify on the status of the liver, it is fine in that it is not permanently damaged, but it is currently affected by the cholestasis. Cholestasis is any condition in which the flow of bile from the liver is blocked. They have done some blood work to determine the cause of this. So far, they haven't found the exact cause- it's likely that it's from the TPN, but to be safe they are doing blood work tomorrow for something called alpha-1 antitrypsin deficiency. Alpha-1 antitrypsin deficiency is an inherited disorder that can cause lung disease in adults and liver disease in adults and children. I'm not aware of anyone else in our families that might suffer from this and I suspect that the test is being done just to cover all the bases.
Today I talked with a woman from the patient rep. department about our experience with the fellow the day Ramsey was born. The way Ramsey's condition was presented to us that day was completely inappropriate. We understood how serious things were, but being told that we could let him "die in our arms at West Penn or alone at Children's" showed no compassion and was unprofessional. Although I had already discussed it with some of the Children's Hospital NICU staff, I felt I needed to file a formal complaint. I hope that the fellow has learned something from the experience because I would never want anyone to go through what we did. What if we, or someone else in a similar position, would have chosen the first option? If we had, Ramsey would not be with us today, 42 days later, doing exceptionally well. Also, I think Children's needs to know about the incident because they don't deserve to be judged based on the fellow's behavior. With the exception of her, we have had nothing but praise for the hospital and the care Ramsey has received!
His billirubin is steady...not any worse but not any better. To clarify on the status of the liver, it is fine in that it is not permanently damaged, but it is currently affected by the cholestasis. Cholestasis is any condition in which the flow of bile from the liver is blocked. They have done some blood work to determine the cause of this. So far, they haven't found the exact cause- it's likely that it's from the TPN, but to be safe they are doing blood work tomorrow for something called alpha-1 antitrypsin deficiency. Alpha-1 antitrypsin deficiency is an inherited disorder that can cause lung disease in adults and liver disease in adults and children. I'm not aware of anyone else in our families that might suffer from this and I suspect that the test is being done just to cover all the bases.
Today I talked with a woman from the patient rep. department about our experience with the fellow the day Ramsey was born. The way Ramsey's condition was presented to us that day was completely inappropriate. We understood how serious things were, but being told that we could let him "die in our arms at West Penn or alone at Children's" showed no compassion and was unprofessional. Although I had already discussed it with some of the Children's Hospital NICU staff, I felt I needed to file a formal complaint. I hope that the fellow has learned something from the experience because I would never want anyone to go through what we did. What if we, or someone else in a similar position, would have chosen the first option? If we had, Ramsey would not be with us today, 42 days later, doing exceptionally well. Also, I think Children's needs to know about the incident because they don't deserve to be judged based on the fellow's behavior. With the exception of her, we have had nothing but praise for the hospital and the care Ramsey has received!
Tuesday Review
Ramsey had his second day of taking a bottle. He took 15ml and did well again as far as sucking and drinking pretty quickly. OT allowed me to offer it this time in their presence. Hopefully soon they will let me or the nurse do it without them. I'm told to be prepared for a slow process as far as feeding and possibly some roadblocks. Hopefully Ramsey will do well and surprise everyone. I won't be too surprised since he has amazed me every step of the way.
He was due for a second session in the afternoon but he missed it when he went for a second ultrasound. They found the gallbladder this time so the jaundice is probably a result of the TPN. This would be the ideal situation, I think, because the medication they are giving him would correct the issue. Also, some of you have questioned why he is not being put under lights for the jaundice....this is a different type of jaundice, and apparently it is beyond that.
We are finally in a private room - yay!
He was due for a second session in the afternoon but he missed it when he went for a second ultrasound. They found the gallbladder this time so the jaundice is probably a result of the TPN. This would be the ideal situation, I think, because the medication they are giving him would correct the issue. Also, some of you have questioned why he is not being put under lights for the jaundice....this is a different type of jaundice, and apparently it is beyond that.
We are finally in a private room - yay!
Monday, February 21, 2011
Revisiting West Penn
Today was my 6 week exam at my high risk OB's office at West Penn Hospital. The minute I walked through the doors I cried. West Penn was the place we were first informed of Ramsey's diagnosis. There, we had ultrasound after ultrasound, each time nervous to see just what was herniated and how big the lungs looked. There, I stayed for two weeks after my preterm labor. And there, I finally delivered precious baby Ramsey.
I am so appreciative for the care I received at West Penn. My doctor and his staff did an excellent job of treating me and helping to bring Ramsey into this world at 38 weeks instead of much too soon. It was great to see everyone today and to share Ramsey's success story with them! The initial emotions I felt as I entered the hospital were quickly replaced by a celebration of Ramsey's life.
I hope to return to West Penn some day to introduce Ramsey to the OB staff as well as everyone in labor and delivery. The time I spent in the hospital following the preterm labor was made easier by everyone who worked there. Aside from the excellent care I received I enjoyed the interaction with the staff.
One special nurse shared with me a book that I strongly recommend called Heaven is For Real. Heaven is For Real is a true story about a 4 year old boy who begins to share stories of his visit to heaven after a life saving surgery. I strongly recommend the book to anyone who has suffered a miscarriage, lost a loved one, or who simply wants to read about a child's description of heaven. Knowing the boy in the book experienced heaven, but still survived, was such a comfort to me during the moments that Ramsey fought for his life. It allowed me to imagine that God was literally holding Ramsey in his arms until I was able to hold him on my own. It's a must read!
I feel various people have been a part of this journey for a reason and one of them was my labor and delivery nurse. Without her nudge, we may have followed our emotions and chosen the misguided option to let Ramsey "die in our arms". I can't imagine the regret we would have felt if we had done so, especially after seeing how far he has come. Every time I think of her, I am reminded of the Alabama song Angel's Among Us. She was there during what was truly our darkest hour. She was our angel in disguise.
Here's the words to the song if you've never heard it:
I was walking home from school on a cold winter's day
Took a shortcut through the woods and I lost my way
It was getting late and I was scared and alone
Then a kind old man took my hand and led me home
Mama couldn't see him, but he was standing there
But I knew in my heart, he was the answer to my prayers
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
They wear so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
I am so appreciative for the care I received at West Penn. My doctor and his staff did an excellent job of treating me and helping to bring Ramsey into this world at 38 weeks instead of much too soon. It was great to see everyone today and to share Ramsey's success story with them! The initial emotions I felt as I entered the hospital were quickly replaced by a celebration of Ramsey's life.
I hope to return to West Penn some day to introduce Ramsey to the OB staff as well as everyone in labor and delivery. The time I spent in the hospital following the preterm labor was made easier by everyone who worked there. Aside from the excellent care I received I enjoyed the interaction with the staff.
One special nurse shared with me a book that I strongly recommend called Heaven is For Real. Heaven is For Real is a true story about a 4 year old boy who begins to share stories of his visit to heaven after a life saving surgery. I strongly recommend the book to anyone who has suffered a miscarriage, lost a loved one, or who simply wants to read about a child's description of heaven. Knowing the boy in the book experienced heaven, but still survived, was such a comfort to me during the moments that Ramsey fought for his life. It allowed me to imagine that God was literally holding Ramsey in his arms until I was able to hold him on my own. It's a must read!
I feel various people have been a part of this journey for a reason and one of them was my labor and delivery nurse. Without her nudge, we may have followed our emotions and chosen the misguided option to let Ramsey "die in our arms". I can't imagine the regret we would have felt if we had done so, especially after seeing how far he has come. Every time I think of her, I am reminded of the Alabama song Angel's Among Us. She was there during what was truly our darkest hour. She was our angel in disguise.
Here's the words to the song if you've never heard it:
I was walking home from school on a cold winter's day
Took a shortcut through the woods and I lost my way
It was getting late and I was scared and alone
Then a kind old man took my hand and led me home
Mama couldn't see him, but he was standing there
But I knew in my heart, he was the answer to my prayers
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
They wear so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
Ramsey's First Bottle
Ramsey was offered his first bottle this morning by Speech Therapy, and this afternoon by Occupational Therapy. He was given 5 ML (around 1/4 ounce) each time and he drank it right up! They said it normally takes much longer to catch on. Each feeding was followed by his tube feed so that he would be hungry when they tried it, and so he would associate the bottle with eating, feeling full, etc. The second time he threw up shortly after the feeding was completed. Hopefully, that was just coincidence...I want things to continue to go smoothly!!
In case you missed my quick update a few hours ago, the liver looks good. We're still uncertain about the gallbladder. More blood was taken to check the billirubin and it is a bit higher than the last time they took it. He is looking more jaundice to me also. Surgery will discuss it in the morning but as of this morning they suggested we could try another ultrasound to see if the gallbladder shows up. It's possible that it was compressed during the first ultrasound. If it doesn't show up after the second ultrasound I think that they will do a test to see if it's there or not. I'm not certain how a missing gallbladder might affect a newborn, but all in all, I think it should be OK if he doesn't have one.
In case you missed my quick update a few hours ago, the liver looks good. We're still uncertain about the gallbladder. More blood was taken to check the billirubin and it is a bit higher than the last time they took it. He is looking more jaundice to me also. Surgery will discuss it in the morning but as of this morning they suggested we could try another ultrasound to see if the gallbladder shows up. It's possible that it was compressed during the first ultrasound. If it doesn't show up after the second ultrasound I think that they will do a test to see if it's there or not. I'm not certain how a missing gallbladder might affect a newborn, but all in all, I think it should be OK if he doesn't have one.
Sunday, February 20, 2011
Sunday Night
Still no word on the ultrasound results. I think they wanted us to speak with a doctor tomorrow instead of a resident today. Weekends are always slower here...
Sunday Morning
Ramsey had his ultrasound last night since his bilirubin is high. We are still waiting for the report. They couldn't see a gallbladder so if he doesn't have one, that could be why it remains high.
No other significant changes other than a plan to increase his feeds to 65 ML an hour. I believe a true bollus feed takes place over a half hour so we are almost there.
We're hoping to be moved to a private room today. We are currently in a semi-private room but at the moment, the other bed is empty.
No other significant changes other than a plan to increase his feeds to 65 ML an hour. I believe a true bollus feed takes place over a half hour so we are almost there.
We're hoping to be moved to a private room today. We are currently in a semi-private room but at the moment, the other bed is empty.
Saturday, February 19, 2011
Prayers Please
Ramsey is having an ultrasound tonight to check his liver. His bilirubin has been high. They think this is caused by the TPN (nutrition) that he received for so long, but they want to rule out any liver problems. If it's just caused by the TPN the affects on the liver can be reversed using medication. Let's pray that his liver is OK!!
A Good Move
Today we moved to acute care. It is great that Ramsey is no longer in need of the ICU! Today has been a tiring and overwhelming day. As happy as I am that he was moved, it will be an adjustment. The nurses here have twice as many patients so the atmosphere is different on this floor. Parents have more responsibility and if you do need the nurse, you just press the call button. It's quiet now, but a few minutes ago, all I could hear was crying babies and call buttons everywhere! I'm sure Ramsey would be fine here, but I feel I should sleep in his room tonight. I know I'm probably putting added stress on myself, but that's my style. I felt bad because Reed wanted me to sleep with him tonight. I got him ready for bed, came back over with Dennis to see Ramsey, then hope to be back with Reed before he wakes up. Of course, if Ramsey wakes up at that same time, it will ruin my whole plan - lol. Time for bed now and time for me to stop rambling.
Thursday, February 17, 2011
The Zoo
Ramsey is doing well. His feeds were increased a bit more today and he is still tolerating it. He seems to love his binky except when OT is there!! He did very well today without the nasal cannula!
Dennis and I took Reed to the zoo today for some quality family time (next time we'll take Ramsey too). It was a quick trip, but it was still fun! Who would have guessed you could go to the zoo in February and not wear a coat!
Dennis and I took Reed to the zoo today for some quality family time (next time we'll take Ramsey too). It was a quick trip, but it was still fun! Who would have guessed you could go to the zoo in February and not wear a coat!
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| This Jeep was a lifesaver since Reed didn't want to walk today. |
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| This baby elephant slipped on the ice seconds after I took the photo. His mom used her trunk to urge her back up away from the icy water. |
Room Air!
They removed the nasal cannula to see how Ramsey does without it!! I don't think he'll miss it much at all. He will likely be transferred to the step down over the weekend.
Wednesday, February 16, 2011
Ramsey's Fun Day
Ramsey has so many new experiences in store for him! He had a fun day watching his mobile (a new addition to the crib), sitting in his bouncy seat, and especially being "held" by his big brother Reed. Reed was so excited! These moments are priceless...
Wednesday Morning - Day 35
Ramsey's MRI and ultrasound were both normal!! I expected them to be, but still, I'm so thankful that they were.
He is being transitioned to the bolus feeds by increasing his volumes.
Surgery has requested that he moves to their step down as soon as a bed is available. Of course, that will be a wonderful move because it means he is doing better- still it's a bit sad to leave this floor that we are so comfortable with and everyone that has cared for him along the way. We will always be grateful for their help and the awesome care they provided Ramsey!
He is being transitioned to the bolus feeds by increasing his volumes.
Surgery has requested that he moves to their step down as soon as a bed is available. Of course, that will be a wonderful move because it means he is doing better- still it's a bit sad to leave this floor that we are so comfortable with and everyone that has cared for him along the way. We will always be grateful for their help and the awesome care they provided Ramsey!
Tuesday, February 15, 2011
Tuesday Night
Ramsey had a full day today. He had OT twice. The first time we woke home for his therapy and he didn't do the greatest, but he redeemed himself for his afternoon session! We were given a list of exercises to do with him. I tried them tonight, and it was fun to see/feel how well he was latching on.
They are preparing for the day Ramsey might be discharged in case he catches on fast to his bottle feedings! They did an ultrasound of his kidneys to make sure some fluid that was there previously is gone. Also, they are currently doing an MRI of his head just to be sure he is OK after everything he went through, although he hasn't shown any signs of problems. We'll probably have the results of both of those tomorrow.
Ramsey mat have pulled his ND tube out a little however they were going to pull it into his stomach anyway, so they didn't do an X-Ray to know for sure. I can tell you, he wants the feeding tube and nasal cannula out in the worst way!!
They are preparing for the day Ramsey might be discharged in case he catches on fast to his bottle feedings! They did an ultrasound of his kidneys to make sure some fluid that was there previously is gone. Also, they are currently doing an MRI of his head just to be sure he is OK after everything he went through, although he hasn't shown any signs of problems. We'll probably have the results of both of those tomorrow.
Ramsey mat have pulled his ND tube out a little however they were going to pull it into his stomach anyway, so they didn't do an X-Ray to know for sure. I can tell you, he wants the feeding tube and nasal cannula out in the worst way!!
Tuesday Morning - Day 34
Ramsey will be given 16 ML feeds by today's end. Next, they will start bolus feedings, most likely 3 times/day. Bolus feeding provides a larger amount of milk all at once, instead of gradually throughout the day. This will help to stretch his stomach and prepare him for bottle feeds.
He is currently on room oxygen. Today, they will try turning it down to 1/2 Liter so we are getting very close to removing the nasal cannula!
Ramsey's current weight is 6lbs. 9 oz. He is in the 7th - 10th percentile. When his swelling was bad, he was at the 75th percentile.
He is currently on room oxygen. Today, they will try turning it down to 1/2 Liter so we are getting very close to removing the nasal cannula!
Ramsey's current weight is 6lbs. 9 oz. He is in the 7th - 10th percentile. When his swelling was bad, he was at the 75th percentile.
Monday, February 14, 2011
Monday Night
It's so exciting to see Ramsey's tubes and wires decreasing in number. Holding him gets easier each time one is removed. Ramsey no longer needs morphine! It's been several days since he was given any medications, except for the breathing treatments (which may continue for the rest of his life). His feeds are up to 13 ML. By Wednesday morning, we should be at our goal of 16 ML, then we may begin offering a bottle. Occupational Therapy worked with him today for the first time. They will continue to do so every day, and they encourage us to work on his therapy a few times a day also. His rooting and sucking reflexes are good. His gag reflex needs a little work, but that is common. I hope he does well with these exercises and that he can handle swallowing and digesting once the bottle is introduced!
When Ramsey was diagnosed with CDH, something special happened. Amidst the fear and uncertainty of his future, I suddenly became closer to the people I care about. I found that I opened up to other's more, and they did the same. Suddenly, we were saying "I Love You" even if we had never said those words before. We realized what really matters in life, and we owe it all to Ramsey! Valentine's Day will come and go, but we should all continue to let other's know we care, especially if they don't expect to hear it!
When Ramsey was diagnosed with CDH, something special happened. Amidst the fear and uncertainty of his future, I suddenly became closer to the people I care about. I found that I opened up to other's more, and they did the same. Suddenly, we were saying "I Love You" even if we had never said those words before. We realized what really matters in life, and we owe it all to Ramsey! Valentine's Day will come and go, but we should all continue to let other's know we care, especially if they don't expect to hear it!
Happy Valentine's Day!
Ramsey left us a cute Valentine with his hand print on it and is geared up in his Valentine's outfit (thanks to a gift from the Ligonier/Latrobe Mom's Group)! He also has his strawberry chapstick on so he is ready for lots of kisses!
Ramsey is doing phenomenal! His oxygen was turned down again, they have discontinued the lasix and he is almost at the goal of 16 ML feedings. Once we reach that, we will introduce the bottle. They will start therapy soon to prepare for that, but he already loves his binky, so hopefully he will also like the bottle!
Happy Valentine's Day! XOXOXOXO
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| My First Valentine's |
Ramsey is doing phenomenal! His oxygen was turned down again, they have discontinued the lasix and he is almost at the goal of 16 ML feedings. Once we reach that, we will introduce the bottle. They will start therapy soon to prepare for that, but he already loves his binky, so hopefully he will also like the bottle!
Happy Valentine's Day! XOXOXOXO
Sunday, February 13, 2011
Sunday Night
I'd say Ramsey has had his best day yet! He transitioned to the regular flow canula, which means he still has the oxygen tube to his nose, but that he is doing better. His oxygen is now set to 25, and it only needs to go to 21, which is room oxygen. Then, they will gradually turn it down from 1 liter until it can be removed. His feeds are up to 11 ML and I believe he only spit up once today.
Dennis gave him his first bath tonight, so he was excited and he did a great job! I was excited to have dinner out tonight with Dennis...it was good to get a breath of fresh air, to eat something besides cafeteria food, and especially to spend some quality time together.
Here's a video from a couple days ago...Ramsey kept getting hiccups and he did not like them one bit!!
Saturday, February 12, 2011
Saturday Night
Ramsey celebrated his 1 month birthday today. He had a pretty good day! His feeds are up to 9 ML. He spit up several times, but no one was overly concerned about it because it was clear. His oxygen (the nasal canula) was turned down to 1. He seemed to fall asleep easier today, and he didn't need any morphine or other sedation (PRN). They have been considering starting him on methadone for withdrawal, which is a long drawn out process. I hope that the fact that he didn't need any PRN's today might mean that he won't be needing the methadone.
Friday, February 11, 2011
Friday Night - Day 30
Ramsey had trouble sleeping today. With the help of medication this afternoon, he quickly fell asleep. I just woke him to bath him at 10 PM. I'm fearful that he will not fall back to sleep and although I want to hold him in the worst way, I'm giving him a little time first to see if he will fall asleep on his own.
Children's offers so many awesome events for children and adults. Many times, grandma takes Reed to the events, but this week, I joined him at the Family Life Carnival. Reed had so much fun, especially catching rubber ducks. I think I need to invest in a water table and fish net this summer...the pictures say it all! Thanks to Children's for taking these great photos that I copied from their Facebook page. Also, thanks to Project Sunshine for helping with the event. Project Sunshine is a nonprofit organization that provides free educational, recreational, and social programs to children and families living with medical challenges.
Tonight, the special event was for the adults at a Coffeehouse Night just for Valentine's Day. They offered complimentary massages, which of course I looked forward to all day. They were 10 minute massages offered by about 6 volunteers. Lucky for me, I scored a 20 minute one from massage therapist Rita Lach of the North Hills. Thanks Rita!! They also had live entertainment, drinks and desserts. I thought I was living the glamorous life until I went to tuck Reed in and he clogged the toilet! So much for my relaxation!!
Ramsey is looking half asleep now...I may just have to rock him to sleep :)
Children's offers so many awesome events for children and adults. Many times, grandma takes Reed to the events, but this week, I joined him at the Family Life Carnival. Reed had so much fun, especially catching rubber ducks. I think I need to invest in a water table and fish net this summer...the pictures say it all! Thanks to Children's for taking these great photos that I copied from their Facebook page. Also, thanks to Project Sunshine for helping with the event. Project Sunshine is a nonprofit organization that provides free educational, recreational, and social programs to children and families living with medical challenges.
Ramsey is looking half asleep now...I may just have to rock him to sleep :)
Friday Morning
Ramsey had a pretty good night. He needed a little more morphine. He has been alert since early this morning. They removed the NG tube (from his mouth) since it seemed to be bothering him and interfering with his pacifier use. He spit up a little afterwards so they dipped his pacifier in some sugar water. He spit up again so they think maybe the sugar water might have been part of what was upsetting him. Hoping for a great day!!
Thursday, February 10, 2011
Thursday Night
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| Let's hope he doesn't need this vent ever again! We'll be glad to see it leave the room! |
This afternoon, he was agitated and spitting up a bit. They inserted a small tube through his mouth into his stomach to help with the spitting. The agitation was treated with morphine which didn't help so he was given an extra sedative to help him relax. Luckily, he didn't need to go back on the vent today.
This evening, Ramsey was agitated again and needed more meds to help him go to sleep and relax his breathing. I hope he rests well tonight!
Ramsey is now up to a 5 ML continuous feed. They'd like to get him up to 16. Then, they will begin bolus feeds so he can begin to tolerate larger amounts of food at one time. Once he handles that, we will move onto bottle feeds.
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| Pappy Barnhart holding Ramsey for the first time |
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| Aunt Lori and Ramsey |
Wednesday, February 9, 2011
The Sweetest Sound
Today was such an exciting day! Ramsey went from being irritable one minute, to being extubated and content minutes later. His cries are so sweet and soft, but louder than they expected them to be. When Dennis heard him for the first time, he said "Is that it?" Ramsey spent a little time awake, then rested most of the day. I'm sure the changes were tiring for him. The 24 hours following the extubation are the most critical. There's always a chance that he would need intubated again, but so far we are hopeful that it won't happen. Without the vent, we will be allowed to get him in and out of bed ourselves. I'm a bit nervous to do so, because he still has so many wires and tubes, but he is much easier to move and hold now. I'm sure after another day I'll be more comfortable with the task. I uploaded a video taken shortly after the extubation. It's so cute to see him breathing and he even sneezes at the end. He still has the ND tube in his nose for feeding and now he has a high-flow nasal canula in his nose too.
Extubation was a Success!
Ramsey was extubated and everything is looking great so far! He is breathing well, crying a bit, and when he does cry, it sounds good for someone that has had a tube in for so long. I held him after extubation for about an hour. They just took another gas and it was awesome! His CO2 is 42 (within the normal range). His PH is 7.4. He now has a high flow nasal cannula and will eventually be transferred to the regular canula.
It's funny, it almost seems like he was just born. There is so much excitement here, and hearing him cry for the first time was wonderful. I took some video since Dennis was unable to make it in in time for the extubation. I will see if I can post it on here for you to see! I can't wait for Dennis and all to see and hear him!!
It's funny, it almost seems like he was just born. There is so much excitement here, and hearing him cry for the first time was wonderful. I took some video since Dennis was unable to make it in in time for the extubation. I will see if I can post it on here for you to see! I can't wait for Dennis and all to see and hear him!!
It's OUT!
Ramsey is doing good so far...will update soon!! :) You should hear his little cries...music to my ears!
It's a Go!!
His gas was so good, the nurse wants to frame it! They will begin the extubation soon! Hope he likes it!
Cross Your Fingers
Let's cross our fingers and say a big prayer. They are about to take the blood gas...let's hope it's a good one!!!
Big Day!?
Today is day 28....Ramsey has been with us 4 weeks. Today, they are hoping to finally extubate him (remove the breathing tube connected to the vent)!!! His morning gases were excellent so they lowered his oxygen. If his noon gases are still good, they will do it! It will be such a milestone to have him off the vent...and it will be so odd to finally hear him cry.
They will increase his feeds every 12 hours and reduce his morphine soon.
I pray that he tolerates all of these changes and that he enjoys life without the vent!!
They will increase his feeds every 12 hours and reduce his morphine soon.
I pray that he tolerates all of these changes and that he enjoys life without the vent!!
Tuesday, February 8, 2011
Tuesday Night
Ramsey finally woke up this afternoon and we had a great day. Grandma Razza got to hold him on Sunday, and today my mom got to hold him- I'm so happy they finally got to hold him after nearly a month! I'm sure the rest of the family is also looking forward to holding him for the first time!
Ramsey was awake for much of the afternoon and I enjoyed my time rocking him and telling him stories. Tonight, I helped bathe him again and held him a little longer.
His feeds are back up to 2 ML- so far, so good. His vent is still at 22. They'll need to lower the pressure a bit but we are so close to extubating!
Tonight, I want to close with the best card Ramsey has received, written by 9 year old Caleb (the CDH survivor whom we met in person a couple weeks ago). Thanks Caleb- we loved your card and it brought tears to my eyes!
Dear Ramsey,
Welcome to the club. The CDH club. Your trophy is a big scar across your stomach. Congratulations! Your mom will always be worried about you but still love you the way you are.
From your new buddy,
Caleb
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| Grandma Barnhart |
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| Grandma Razza |
His feeds are back up to 2 ML- so far, so good. His vent is still at 22. They'll need to lower the pressure a bit but we are so close to extubating!
Tonight, I want to close with the best card Ramsey has received, written by 9 year old Caleb (the CDH survivor whom we met in person a couple weeks ago). Thanks Caleb- we loved your card and it brought tears to my eyes!
Dear Ramsey,
Welcome to the club. The CDH club. Your trophy is a big scar across your stomach. Congratulations! Your mom will always be worried about you but still love you the way you are.
From your new buddy,
Caleb
Tuesday Morning - Day 27
Ramsey has been resting, mostly due to the extra sedatives he was given. He still seems a bit uncomfortable due to withdrawal. His feedings will resume today; they will start back up at 1 ML. His vent was reduced to 22 this morning, so he is nearing extubation! I will be so relieved to have that removed from his mouth, and I'm sure he will be too. You can tell that the tubes are bothersome to him.
Monday, February 7, 2011
Monday Night
Ramsey rested all day, and now it's my turn!
Following is a poem written by 17 year old Chelsea Croner. Chelsea hopes to have a career helping children and was inspired by Ramsey's story.
Mommy's Strong Soldier
Mommy I'm crying out for help.
But only in my head.
I'm lying here patiently in my bed,
listening to every word that is being said.
The nurses keep whispering,
What are they saying?
Mommy will they help me get better?
Both her and I are hoping and praying.
Visitors and family ask when I am coming home.
No one really knows.
I've been in this hospital for almost a month.
Although it seems like a while,
then i see my mommy's smile.
She makes anything worthwhile.
I'm getting surgery today.
This is another step closer
It's taking time, tick tock tick tock.
God I cant wait for this to be over.
I don't think I can take this.
I'm pretty much a wreck.
Well hey; I'm only 3 weeks.
What do you expect?
This has been a long journey.
And I'm still going through it
I'm not alone though, I have a great family and much support
I will keep on fighting, I will not quit.
No one is perfect in this world.
Everyone has flaws.
Keep trying and keep your head up when you fall.
Mommy, you've done alot, I give you appreciation.
I wont hesitate to help you with any problem that you're facing.
Whether I'm young or older,
I promise, I'll always be your strong soldier
Following is a poem written by 17 year old Chelsea Croner. Chelsea hopes to have a career helping children and was inspired by Ramsey's story.
Mommy's Strong Soldier
Mommy I'm crying out for help.
But only in my head.
I'm lying here patiently in my bed,
listening to every word that is being said.
The nurses keep whispering,
What are they saying?
Mommy will they help me get better?
Both her and I are hoping and praying.
Visitors and family ask when I am coming home.
No one really knows.
I've been in this hospital for almost a month.
Although it seems like a while,
then i see my mommy's smile.
She makes anything worthwhile.
I'm getting surgery today.
This is another step closer
It's taking time, tick tock tick tock.
God I cant wait for this to be over.
I don't think I can take this.
I'm pretty much a wreck.
Well hey; I'm only 3 weeks.
What do you expect?
This has been a long journey.
And I'm still going through it
I'm not alone though, I have a great family and much support
I will keep on fighting, I will not quit.
No one is perfect in this world.
Everyone has flaws.
Keep trying and keep your head up when you fall.
Mommy, you've done alot, I give you appreciation.
I wont hesitate to help you with any problem that you're facing.
Whether I'm young or older,
I promise, I'll always be your strong soldier
Monday Morning
Ramsey upgraded to a crib last night! He was getting a bit too long for his bed; he is now 20". Also, we started giving him a pacifier. He really seemed to like it, but it wouldn't stay in unless it was held there.
Ramsey was really uncomfortable last night. We attributed it to withdrawal. He just looked so miserable, and he couldn't sleep. He only seemed comforted when the binky was in his mouth. He was given a little sedative to relax him, but even that wasn't helping. Around 4AM, he threw up again. They checked his tubes to make sure they were positioned properly...they thought maybe the one they put in yesterday needed adjusted (The one in his nose, that they put directly into his intestines, hoping to prevent the vomiting). It was still positioned properly. Amidst all of this, they gave him some morphine to relax him. He continued to vomit, and he threw up the tube that was in his mouth. (While the tube was out, they heard his cries for the first time; the tubes had kept him silent until then). They re-intubated him. They have determined that he is suffering from some major reflux. They will start him on Pepcid to treat it, and will continue his feeds once the meds take effect.
Reflux is common with CDH babies, since their intestines need some help to get working. They will start him on a small dose of Pepcid and increase as needed. I hope and pray that it helps him. I hate to see him in pain, and the morphine apparently wasn't much help. If the meds don't help the issue, they would need to insert a G-tube (feeding tube directly into his stomach).
Amidst the feeding setbacks, one plus is that his CO2 was better than it has been in days. This allowed them to lower the vent to 26. I am hoping that he can be extubated soon. He may need steroids in order to beef up his lungs in order to to do so. The tube in his mouth is affecting his palate, which could affect how well he takes a bottle, as well as cause issues when his teeth come in.
Praying that the reflux can be treated, that he can be extubated soon, and that he rests well today!
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| Ramsey in his new crib |
Ramsey was really uncomfortable last night. We attributed it to withdrawal. He just looked so miserable, and he couldn't sleep. He only seemed comforted when the binky was in his mouth. He was given a little sedative to relax him, but even that wasn't helping. Around 4AM, he threw up again. They checked his tubes to make sure they were positioned properly...they thought maybe the one they put in yesterday needed adjusted (The one in his nose, that they put directly into his intestines, hoping to prevent the vomiting). It was still positioned properly. Amidst all of this, they gave him some morphine to relax him. He continued to vomit, and he threw up the tube that was in his mouth. (While the tube was out, they heard his cries for the first time; the tubes had kept him silent until then). They re-intubated him. They have determined that he is suffering from some major reflux. They will start him on Pepcid to treat it, and will continue his feeds once the meds take effect.
Reflux is common with CDH babies, since their intestines need some help to get working. They will start him on a small dose of Pepcid and increase as needed. I hope and pray that it helps him. I hate to see him in pain, and the morphine apparently wasn't much help. If the meds don't help the issue, they would need to insert a G-tube (feeding tube directly into his stomach).
Amidst the feeding setbacks, one plus is that his CO2 was better than it has been in days. This allowed them to lower the vent to 26. I am hoping that he can be extubated soon. He may need steroids in order to beef up his lungs in order to to do so. The tube in his mouth is affecting his palate, which could affect how well he takes a bottle, as well as cause issues when his teeth come in.
Praying that the reflux can be treated, that he can be extubated soon, and that he rests well today!
Sunday, February 6, 2011
New Derry is Rooting for Ramsey
Our Super-Boy is Ready for the Super Bowl
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| Ramsey is ready to PARTY! |
His CO2 was great last night. They lowered the vent to 32 around midnight and will lower it again today!
Thanks to Project Sweet Pea for giving Ramsey his terrible towel and cute Steeler bear!!
Saturday, February 5, 2011
Saturday Night
Ramsey had a rough afternoon, throwing up and pooping at the same time. Luckily an X-Ray revealed that everything is OK, he just needs to continue going to the bathroom. His belly looks so large. It was sad seeing him so sick, but as Dennis said these worries are minor compared to our previous concerns. They stopped his feeds for a few hours until he recovered. Lasix and chips continue as needed.
Ramsey lost his "button" today- he has a nice little "innie". Earlier this week, they removed the tape from his incision; it looks great- it is just a hairline incision and the nurses said he won't even have much to brag about.
Ramsey lost his "button" today- he has a nice little "innie". Earlier this week, they removed the tape from his incision; it looks great- it is just a hairline incision and the nurses said he won't even have much to brag about.
Saturday
Ramsey had a good night. The plan for today is much the same as it has been. The morphine was lowered. He is still receiving the "chip" laxatives...if he keeps going, they might increase his milk intake today.
We're looking forward to a visit from Kate and Jessica today, as they deliver Steeler goodies on behalf of Project Sweet Pea to the NICU babies here at Children's Hospital and Magee-Womens.
We're looking forward to a visit from Kate and Jessica today, as they deliver Steeler goodies on behalf of Project Sweet Pea to the NICU babies here at Children's Hospital and Magee-Womens.
Friday, February 4, 2011
Friday
Ramsey threw up a little last night then finally did #2 again. He felt much better afterward. They aren't making many changes today, except for lowering the morphine. They feel the morphine might be keeping him from moving his bowels properly.
I am anxious to get back to the hospital asap! We are waiting for UPS to deliver a package that should have been here yesterday before we can leave. Poor Reed is so confused. He thinks the Ronald McDonald House is my home and that home is now Dennis' home.
I am anxious to get back to the hospital asap! We are waiting for UPS to deliver a package that should have been here yesterday before we can leave. Poor Reed is so confused. He thinks the Ronald McDonald House is my home and that home is now Dennis' home.
Thursday, February 3, 2011
Thursday Night
Ramsey's 10PM gas was in the 50s so they were able to lower the vent to 34. They will give him lasiks twice a day for the next couple days.
Thursday Morning
Ramsey pooped last night! Hopefully he keeps it up. They are planning to increase his feeds to 3 ML an hour.
The nitric is turned off and they made some big changes on the vent. The vent's rate was lowered to 36 (down from 42) and this time, they increased his pressure support to 10 (up from 6). They think he is breathing well on his own, so lowering the vent will allow him to do so, but increasing the pressure will give him added support when needed.
I am running home tonight to pick up some things for Ramsey and have a night at home with Dennis and Reed....it will be good for Reed! I hope I can handle being away. I know I will worry, but he is in good hands here. I guess, as the rest of the family has discovered already, it is hard being here, but it's also hard being away.
I'm so thankful for a wonderful staff here at Children's and also for wonderful friends and family. We are so fortunate for their support! Thanks to my mother, and Dennis' mom in particular, for staying here to help with Reed so that we can attempt to give him a little normalcy at this time. And when we can't be together, it's good to know we have many options for his care - with our parents, with his sitter (thanks Frank and Betty), or with other friends/family members who have offered to help. We couldn't do this alone and we will never take their support for granted.
The nitric is turned off and they made some big changes on the vent. The vent's rate was lowered to 36 (down from 42) and this time, they increased his pressure support to 10 (up from 6). They think he is breathing well on his own, so lowering the vent will allow him to do so, but increasing the pressure will give him added support when needed.
I am running home tonight to pick up some things for Ramsey and have a night at home with Dennis and Reed....it will be good for Reed! I hope I can handle being away. I know I will worry, but he is in good hands here. I guess, as the rest of the family has discovered already, it is hard being here, but it's also hard being away.
I'm so thankful for a wonderful staff here at Children's and also for wonderful friends and family. We are so fortunate for their support! Thanks to my mother, and Dennis' mom in particular, for staying here to help with Reed so that we can attempt to give him a little normalcy at this time. And when we can't be together, it's good to know we have many options for his care - with our parents, with his sitter (thanks Frank and Betty), or with other friends/family members who have offered to help. We couldn't do this alone and we will never take their support for granted.
Wednesday, February 2, 2011
Wednesday Night Update
The vent is finally down to 42...hopefully they won't need to turn it back up again. His CO2 is still fluctuating. He was given a laxative today- hopefully it kicks in soon...that was 2:00 and he still hasn't gone. I got to hold him again today, and may do so again tonight. The room is always warm and the lights are dim; it's hard not to fall asleep with him in my arms.
Wednesday Morning Update
It's hard to believe we've been here three weeks so far! Ramsey's nitric was turned down again, but it won't be off until tomorrow. His tube feedings are still going well, in fact today, he will receive double the milk (2 ML /hour). The morphine was lowered again today also. I guess the last few days have been much the same but slow and steady wins the race!
Tuesday, February 1, 2011
Tuesday Night
Ramsey is being given a very small constant supply of milk. Each hour, he receives 1 ML. So far, he seems to be digesting it well. Let's hope that continues!
The nitric oxide was weaned again today and will probably be off tomorrow. His vent was turned down to 43, but after another high CO2 at dinnertime, it was turned back up to 45. It may just be a slow process, getting him off the vent. Surprisingly, his last CO2 was lower (which is good), so maybe tomorrow will be a better day as far as that goes. I'd like to see some successful weaning on the vent.
Tonight I felt so bad for him as he shook due to withdrawal. Luckily, it didn't last long and he didn't need anything to get over it.
The nitric oxide was weaned again today and will probably be off tomorrow. His vent was turned down to 43, but after another high CO2 at dinnertime, it was turned back up to 45. It may just be a slow process, getting him off the vent. Surprisingly, his last CO2 was lower (which is good), so maybe tomorrow will be a better day as far as that goes. I'd like to see some successful weaning on the vent.
Tonight I felt so bad for him as he shook due to withdrawal. Luckily, it didn't last long and he didn't need anything to get over it.
Milk Time!
Ramsey gets to try a little milk today. Since feeding issues are common, let's hope and pray that this feeding and subsequent ones go well!
His morphine was lowered again today as well as the nitric oxide. They might try to lower the vent later- we'll see.
His morphine was lowered again today as well as the nitric oxide. They might try to lower the vent later- we'll see.