Day 56
Jack is doing very well recovering from his surgery. He is still a bit uncomfortable and suffers from occasionally bouts of oxygen desaturation, but it far less frequent than yesterday. He did have to be put back on CPAP because his blood gases came back showing that his CO2 was a bit high. This is only temporary and he should be off the CPAP tomorrow. In fact, he was put back on nasal cannula so we could hold him. He likes that a lot more.
His neurosurgeon said that his shunt seems to be doing its job. His fontanel (soft spot on his head) is a bit full, but his shunt may take a couple of days to work properly. Finding the right valve for the shunt can be tricky because it is a pressure release valve. If it is too sensitive to pressure, then too much cerebral spinal fluid can pass into his abdomen. If it isn’t sensitive enough then not enough fluid will pass leading to too much pressure. He had a few X-rays today to see if there were any problems and there were not. When we left the NICU tonight his fontanel seemed to be less swollen. His nurse will keep track of that tonight and tomorrow morning the surgeons will come back and check it.
Wednesday, April 30, 2003
Tuesday, April 29, 2003
Day 55
Day 55
Jack had his shunt and hernia surgeries today and all went well. To read more about the procedure click here.
We went in to the NICU bright and early this morning because Jack had his surgeries scheduled for 7:30. We wanted to be by his side before he was whisked away to the OR. His surgery was actually moved to 9:40 and unfortunately the NICU was closed to visitors so we couldn’t be with him for a very long time. So, we waited outside of the NICU for his crib to come wheeled down the hall. That happened pretty much right at 9:40 so we were prepared. We followed him down a couple of floors to the OR and wished him good luck.
His surgery lasted about four hours and we spent that time in the Family Waiting Room and took a few breaks to walk around a bit. At about halfway through, his neurosurgeon found us and gave us the great news that Jack’s shunt surgery was a success and there were no complications. We still had to wait until his hernia surgery was completed before we could see him. That call finally came and we learned that was without incident as well. What a relief! Now all we had to do was wait for Jack to be wheeled back up to his home in the NICU.
So there we sat for what seemed like a long time. Finally, we saw the elevator doors open and there was Jack. We yelled, “Is that Jack? Can we see him?!” And they said yes. There he was, wide awake and looking all around. We thought that he was going to have to be intubated for a few days. It was great to see him doing fine and without a tube in his mouth.
We gave his nurse about twenty minutes to get Jack off his temporary oxygen and monitoring system and then went into the NICU. He was still a very active boy at that point too. He was on a lot of caffeine to help stimulate his breathing and was quite alert. We also managed to get to his bedside when the doctors were making their rounds. They said he is looking very good. He was having some issues maintaining his oxygen levels and a few times they dropped rapidly. Actually more rapidly than we have ever seen. We were very nervous, but the nurse said that this sort of thing is normal after surgery. That kinda put our minds at ease. He also didn’t seem very comfortable soon after he returned. We’re sure he was in pain, but we just don’t know how much. The nurse soon gave him a pain reliever and that seemed to help.
We took a small break and went for a walk, hoping that Jack would be better when we returned. And he was! The nurse said that he only destabilized once compared to every three or four minutes when we were first with him. He also seemed much more relaxed. The medicine was doing it’s job.
We left earlier than normal since we were pretty exhausted and Jack fell into a deep sleep. We also didn’t want to disturb him because we know he needs his rest too.
We called in and spoke to his nurse about a half an hour ago and she said Jack is doing fine. He only had a few episodes and is in no noticeable pain. Once again he proved that he can not only overcome obstacles, but also exceed everybody’s expectations.
Jack had his shunt and hernia surgeries today and all went well. To read more about the procedure click here.
We went in to the NICU bright and early this morning because Jack had his surgeries scheduled for 7:30. We wanted to be by his side before he was whisked away to the OR. His surgery was actually moved to 9:40 and unfortunately the NICU was closed to visitors so we couldn’t be with him for a very long time. So, we waited outside of the NICU for his crib to come wheeled down the hall. That happened pretty much right at 9:40 so we were prepared. We followed him down a couple of floors to the OR and wished him good luck.
His surgery lasted about four hours and we spent that time in the Family Waiting Room and took a few breaks to walk around a bit. At about halfway through, his neurosurgeon found us and gave us the great news that Jack’s shunt surgery was a success and there were no complications. We still had to wait until his hernia surgery was completed before we could see him. That call finally came and we learned that was without incident as well. What a relief! Now all we had to do was wait for Jack to be wheeled back up to his home in the NICU.
So there we sat for what seemed like a long time. Finally, we saw the elevator doors open and there was Jack. We yelled, “Is that Jack? Can we see him?!” And they said yes. There he was, wide awake and looking all around. We thought that he was going to have to be intubated for a few days. It was great to see him doing fine and without a tube in his mouth.
We gave his nurse about twenty minutes to get Jack off his temporary oxygen and monitoring system and then went into the NICU. He was still a very active boy at that point too. He was on a lot of caffeine to help stimulate his breathing and was quite alert. We also managed to get to his bedside when the doctors were making their rounds. They said he is looking very good. He was having some issues maintaining his oxygen levels and a few times they dropped rapidly. Actually more rapidly than we have ever seen. We were very nervous, but the nurse said that this sort of thing is normal after surgery. That kinda put our minds at ease. He also didn’t seem very comfortable soon after he returned. We’re sure he was in pain, but we just don’t know how much. The nurse soon gave him a pain reliever and that seemed to help.
We took a small break and went for a walk, hoping that Jack would be better when we returned. And he was! The nurse said that he only destabilized once compared to every three or four minutes when we were first with him. He also seemed much more relaxed. The medicine was doing it’s job.
We left earlier than normal since we were pretty exhausted and Jack fell into a deep sleep. We also didn’t want to disturb him because we know he needs his rest too.
We called in and spoke to his nurse about a half an hour ago and she said Jack is doing fine. He only had a few episodes and is in no noticeable pain. Once again he proved that he can not only overcome obstacles, but also exceed everybody’s expectations.
Monday, April 28, 2003
Day 54
Day 54
Tomorrow is an important day for Jack. He is having surgery to have the shunt implanted and also to fix his hernia. We weren’t expecting the surgery to happen tomorrow, so the news was a surprise. Tonight he will get his last feeding before the surgery and very early in the morning he will be taken to the OR. Unfortunately he will have to be intubated again during the surgery but he will probably only need the breathing tube for a day or two.
We are very nervous but the neurosurgeon has performed hundreds of these procedures and the likelihood of complications is small. We are more worried about infections in the coming days and the possibility that the shunt may not work properly. Jack has been a real trooper so far in his life, so we feel optimistic that everything will be ok. We mostly feel sorry for the little guy…that he has to go through this, because despite occasionally experiencing refluxes after eating, he seems very comfortable and relaxed in his little home. Any discomfort for him is hard on our hearts. But, we know that this needs to happen, so we are trying to be strong for him.
Tonight, Jack is continuing to do well. Sometimes his oxygen levels drop a bit, but that is only because he gets so comfortable he forgets to breathe. It only takes a little stimulation to get him to take deep breaths and sometimes the oxygen needs to be increased slightly. We are so grateful for the nurses who keep a watchful eye on him, ready to come to his aid if he needs it.
We will be seeing Jack bright and early at 6am to wish him well. Please keep him in your thoughts and prayers.
Tomorrow is an important day for Jack. He is having surgery to have the shunt implanted and also to fix his hernia. We weren’t expecting the surgery to happen tomorrow, so the news was a surprise. Tonight he will get his last feeding before the surgery and very early in the morning he will be taken to the OR. Unfortunately he will have to be intubated again during the surgery but he will probably only need the breathing tube for a day or two.
We are very nervous but the neurosurgeon has performed hundreds of these procedures and the likelihood of complications is small. We are more worried about infections in the coming days and the possibility that the shunt may not work properly. Jack has been a real trooper so far in his life, so we feel optimistic that everything will be ok. We mostly feel sorry for the little guy…that he has to go through this, because despite occasionally experiencing refluxes after eating, he seems very comfortable and relaxed in his little home. Any discomfort for him is hard on our hearts. But, we know that this needs to happen, so we are trying to be strong for him.
Tonight, Jack is continuing to do well. Sometimes his oxygen levels drop a bit, but that is only because he gets so comfortable he forgets to breathe. It only takes a little stimulation to get him to take deep breaths and sometimes the oxygen needs to be increased slightly. We are so grateful for the nurses who keep a watchful eye on him, ready to come to his aid if he needs it.
We will be seeing Jack bright and early at 6am to wish him well. Please keep him in your thoughts and prayers.
Sunday, April 27, 2003
Day 53
Day 53
We had a nice time at the WalkAmercia event today, thanks Grandpa Bob, Steph, and Jill for walking with us!! Check out the WalkAmerica link for our grand total!
We also had a very nice visit with Jack this afternoon. He was sleeping mostly, but that’s okay, he works so hard! We tucked him in for the night and told him we’d see him tomorrow.
We are hoping to know tomorrow what day his surgery will be this week. Most likely Wednesday or Thursday. We will keep you posted. Please keep Jack in your thoughts and prayers!
We had a nice time at the WalkAmercia event today, thanks Grandpa Bob, Steph, and Jill for walking with us!! Check out the WalkAmerica link for our grand total!
We also had a very nice visit with Jack this afternoon. He was sleeping mostly, but that’s okay, he works so hard! We tucked him in for the night and told him we’d see him tomorrow.
We are hoping to know tomorrow what day his surgery will be this week. Most likely Wednesday or Thursday. We will keep you posted. Please keep Jack in your thoughts and prayers!
Saturday, April 26, 2003
Day 52
Day 52
After a long pause in development, Jack’s room is really taking shape with the addition of his crib and changing table/chest of drawers. They match the woodwork perfectly. Thanks to Grandpa Bob and Tina we could get the furniture to our house. Thanks to G-Pauly, we could get the furniture up the stairs and assembled. And thanks to Great-Grandpa Umpa, we could get the furniture! It truly was a team effort and it looks wonderful up there, but yes, it will only be complete when Jack comes home.
And, that time is getting closer and closer. Jack is doing great. His nurses say that he looks wonderful. On his medical chart, the doctors even said he is “growing like a weed!” He weighs 4lbs 4.3oz.
His rapid weight gain of course is good, but that also means that he will be getting the shunt put in soon. This week to be exact. Probably Wednesday or Thursday. While under anesthesia he will also get his hernia taken care of. This will be a crucial time, but we know Jack is strong enough to get through it A-Ok.
After a long pause in development, Jack’s room is really taking shape with the addition of his crib and changing table/chest of drawers. They match the woodwork perfectly. Thanks to Grandpa Bob and Tina we could get the furniture to our house. Thanks to G-Pauly, we could get the furniture up the stairs and assembled. And thanks to Great-Grandpa Umpa, we could get the furniture! It truly was a team effort and it looks wonderful up there, but yes, it will only be complete when Jack comes home.
And, that time is getting closer and closer. Jack is doing great. His nurses say that he looks wonderful. On his medical chart, the doctors even said he is “growing like a weed!” He weighs 4lbs 4.3oz.
His rapid weight gain of course is good, but that also means that he will be getting the shunt put in soon. This week to be exact. Probably Wednesday or Thursday. While under anesthesia he will also get his hernia taken care of. This will be a crucial time, but we know Jack is strong enough to get through it A-Ok.
Day 52
Day 52
Boy it’s late way past our bedtime! Jack had a great day today. He’s up to 4lbs, 1.5oz. He’s our big boy!
Mommy got to hold Jack all afternoon, and he hardly needed his nurse at all…we’re getting used to taking care of Jack all on our own.
Tomorrow we will pick up Jack’s crib and changing table from BabiesRus. We are very excited!
Goodnight everyone and have a great weekend!
Boy it’s late way past our bedtime! Jack had a great day today. He’s up to 4lbs, 1.5oz. He’s our big boy!
Mommy got to hold Jack all afternoon, and he hardly needed his nurse at all…we’re getting used to taking care of Jack all on our own.
Tomorrow we will pick up Jack’s crib and changing table from BabiesRus. We are very excited!
Goodnight everyone and have a great weekend!
Thursday, April 24, 2003
Day 50
Day 50
Jack is a whopping 4lbs today!! He’s actually just a tad over 4lbs…YAY, way to go Jack! He’s continuing to amaze us with his rapid weight gain. Jack’s eating well, but sometimes has bouts of acid reflux. This is uncomfortable for Jack so they put him on a medicine called Reglan to help him digest his food faster to relieve the reflux.
Jack really loves his crib! Well, actually we really love his crib too. It’s so much easier to see him and take care of him. We don’t even need a nurse around when we want to get him out to hold him. This freedom is absolutely wonderful!
It looks like Jack will need the shunt surgery. This is not a surprise to us. This will take the place of his temporary reservoir and will be a permanent solution to drain the fluid to prevent swelling from Hydrocephalus. He also has a small hernia that will also be repaired at the time of his shunt surgery. This is good because then he’ll only have to go under anesthesia once. They want him to be just a little bit bigger before they do the surgery so we are not sure of an exact time frame yet.
Jack will have another eye exam in two weeks. We will then meet with the eye doctor to see if he can tell us anything more. Even though a lot of things are “wait and see” we know Jack is strong and will pull through everything just fine!
Jack is a whopping 4lbs today!! He’s actually just a tad over 4lbs…YAY, way to go Jack! He’s continuing to amaze us with his rapid weight gain. Jack’s eating well, but sometimes has bouts of acid reflux. This is uncomfortable for Jack so they put him on a medicine called Reglan to help him digest his food faster to relieve the reflux.
Jack really loves his crib! Well, actually we really love his crib too. It’s so much easier to see him and take care of him. We don’t even need a nurse around when we want to get him out to hold him. This freedom is absolutely wonderful!
It looks like Jack will need the shunt surgery. This is not a surprise to us. This will take the place of his temporary reservoir and will be a permanent solution to drain the fluid to prevent swelling from Hydrocephalus. He also has a small hernia that will also be repaired at the time of his shunt surgery. This is good because then he’ll only have to go under anesthesia once. They want him to be just a little bit bigger before they do the surgery so we are not sure of an exact time frame yet.
Jack will have another eye exam in two weeks. We will then meet with the eye doctor to see if he can tell us anything more. Even though a lot of things are “wait and see” we know Jack is strong and will pull through everything just fine!
Wednesday, April 23, 2003
Day 49
Day 49
We got many surprises today when we went in to see Jack. He is in a CRIB! Way to go Jack. He was doing such a good job keeping his temperature where it needs to be that they decided he no longer needed an incubator. Now we have to shop for a mobile for him!
In addition to that great news, Mommy fed Jack with a bottle! Yes…Jack did very well mastering the act of sucking and swallowing at the same time and remembering to breathe. He was given 15ccs of food and managed to only get about 3 on his bib. What a great job!
He is up to 34ccs of food every three hours and that is contributing to his rapid weight gain. He is 3lbs 15.6oz. Just .4oz away from an astonishing four pounds. That is great news.
We did get the results from the eye exam today and found that Jack suffered some optic nerve damage at the time of his bleed. Its frustrating, but like seemingly everything else, only time will tell. It might turn out that he may need glasses at an early age. We are optimistic because we know that Jack can see. When we take pictures of him, he flinches and quickly closes his eyes because of the flash. He also looks at us all the time.
We had a nice chat with one of his nurses today. We discussed Jack’s trip home and all the joys and challenges that come along with it. Of course we can’t wait till the day that Jack will be coming home, but it will be a stressful time. We are used to having our most of our daily worries lessened by knowing the NICU staff is there ready to jump in at any time. But, we are preparing in advance by doing as much as we can with Jack now and asking the nurses many questions.
We got many surprises today when we went in to see Jack. He is in a CRIB! Way to go Jack. He was doing such a good job keeping his temperature where it needs to be that they decided he no longer needed an incubator. Now we have to shop for a mobile for him!
In addition to that great news, Mommy fed Jack with a bottle! Yes…Jack did very well mastering the act of sucking and swallowing at the same time and remembering to breathe. He was given 15ccs of food and managed to only get about 3 on his bib. What a great job!
He is up to 34ccs of food every three hours and that is contributing to his rapid weight gain. He is 3lbs 15.6oz. Just .4oz away from an astonishing four pounds. That is great news.
We did get the results from the eye exam today and found that Jack suffered some optic nerve damage at the time of his bleed. Its frustrating, but like seemingly everything else, only time will tell. It might turn out that he may need glasses at an early age. We are optimistic because we know that Jack can see. When we take pictures of him, he flinches and quickly closes his eyes because of the flash. He also looks at us all the time.
We had a nice chat with one of his nurses today. We discussed Jack’s trip home and all the joys and challenges that come along with it. Of course we can’t wait till the day that Jack will be coming home, but it will be a stressful time. We are used to having our most of our daily worries lessened by knowing the NICU staff is there ready to jump in at any time. But, we are preparing in advance by doing as much as we can with Jack now and asking the nurses many questions.
Tuesday, April 22, 2003
Day 48
Day 48
Jack weighs 3lbs 13.2oz today. We can’t wait till he reaches 4 pounds.
Jack slept in his mommy’s arms most of the afternoon and then even was held by his daddy when he arrived. Then he got a little upset and went back into his bed (not from his daddy though).
Jack had an eye exam today and we are still awaiting the results. We should have them tomorrow.
There was little new news today, but Jack is still on the right path. He’s getting bigger and stronger every day!
Jack weighs 3lbs 13.2oz today. We can’t wait till he reaches 4 pounds.
Jack slept in his mommy’s arms most of the afternoon and then even was held by his daddy when he arrived. Then he got a little upset and went back into his bed (not from his daddy though).
Jack had an eye exam today and we are still awaiting the results. We should have them tomorrow.
There was little new news today, but Jack is still on the right path. He’s getting bigger and stronger every day!
Monday, April 21, 2003
Day 47
Day 47
Jack is officially off CPAP! At least for the time being. He is doing all the work on his own now, but that doesn’t mean that he won’t need the assistance of CPAP sometime in the future. We are just happy, and we’re sure Jack is too, that no more bothersome nasal prongs are needed. He still has the small ones for the nasal cannula, but they are no sweat for him. He does try to pull them out occasionally.
Mommy got to hold Jack again this evening and he did very well. He was looking all around switching glances back and forth between Mommy and Daddy. He even snuck in a few great big smiles.
He’s up to 3lbs 11.5oz already. Soon he’ll be up to 4 pounds! It wasn’t too long ago that he barely gained an ounce every three days. Now he gains an ounce a day and sometimes more.
He is doing really well regulating his body temperature, so soon he’ll be in a crib instead of an incubator. That will be great because it will be so much easier to get him out of bed and hold him.
Jack is officially off CPAP! At least for the time being. He is doing all the work on his own now, but that doesn’t mean that he won’t need the assistance of CPAP sometime in the future. We are just happy, and we’re sure Jack is too, that no more bothersome nasal prongs are needed. He still has the small ones for the nasal cannula, but they are no sweat for him. He does try to pull them out occasionally.
Mommy got to hold Jack again this evening and he did very well. He was looking all around switching glances back and forth between Mommy and Daddy. He even snuck in a few great big smiles.
He’s up to 3lbs 11.5oz already. Soon he’ll be up to 4 pounds! It wasn’t too long ago that he barely gained an ounce every three days. Now he gains an ounce a day and sometimes more.
He is doing really well regulating his body temperature, so soon he’ll be in a crib instead of an incubator. That will be great because it will be so much easier to get him out of bed and hold him.
Sunday, April 20, 2003
Day 46
Day 46
HAPPY EASTER! Jack had a very happy Easter today. He got his picture taken with the Easter Bunny and everything! The nurses posed him with the Bunny and snapped a Polaroid of him and put it into a cute card for us. That truly made our day!
He is up to 3lbs, 10.6 oz and is getting 31ccs of food. He’s continuing to grow right before our eyes. He’s still on 9 hours of Nasal Cannula and 3 hours of CPAP. He’s getting there!
HAPPY EASTER! Jack had a very happy Easter today. He got his picture taken with the Easter Bunny and everything! The nurses posed him with the Bunny and snapped a Polaroid of him and put it into a cute card for us. That truly made our day!
He is up to 3lbs, 10.6 oz and is getting 31ccs of food. He’s continuing to grow right before our eyes. He’s still on 9 hours of Nasal Cannula and 3 hours of CPAP. He’s getting there!
Saturday, April 19, 2003
Day 45
Day 45
Jack weighs 3lbs, 9.5 oz! He had a big weight gain in the last two days. He’s now getting 30ccs of food every three hours. He’s also on 9 hours of Nasal Cannula and only 3 hours of CPAP. Tomorrow they hope to eliminate the CPAP completely!! He’s making great progress since he was only off the ventilator less than a week ago.
We got to hold Jack again today, he’s such a good boy! We are so looking forward to the day when he comes home. We’ll be so happy. But until that day, we know he’s getting the best care anywhere!
Jack weighs 3lbs, 9.5 oz! He had a big weight gain in the last two days. He’s now getting 30ccs of food every three hours. He’s also on 9 hours of Nasal Cannula and only 3 hours of CPAP. Tomorrow they hope to eliminate the CPAP completely!! He’s making great progress since he was only off the ventilator less than a week ago.
We got to hold Jack again today, he’s such a good boy! We are so looking forward to the day when he comes home. We’ll be so happy. But until that day, we know he’s getting the best care anywhere!
Friday, April 18, 2003
Day 44
Day 44
Jack was so alert and wide awake during our visit today. His little facial expressions are priceless! He’s such a cutie. He amazes us more and more each passing day – he’s getting so big and strong. We’re hooked on the kid!
We gave him a bath this afternoon and he didn’t seem to mind it at all! He was such a good boy. They also extended his time off CPAP! He’s switching from CPAP to Nasal Cannula every 6 hours. This is a great accomplishment. He didn’t have any Apnea episodes today, which is also very good.
We hope everyone has a safe and happy Easter! Goodnight everyone!
Jack was so alert and wide awake during our visit today. His little facial expressions are priceless! He’s such a cutie. He amazes us more and more each passing day – he’s getting so big and strong. We’re hooked on the kid!
We gave him a bath this afternoon and he didn’t seem to mind it at all! He was such a good boy. They also extended his time off CPAP! He’s switching from CPAP to Nasal Cannula every 6 hours. This is a great accomplishment. He didn’t have any Apnea episodes today, which is also very good.
We hope everyone has a safe and happy Easter! Goodnight everyone!
Thursday, April 17, 2003
Day 43
Day 43
Jack and mommy got to bond “kangaroo” style this evening! It was a wonderful thing for both of them. Jack was very content and even had his dinner while on her chest.
Every once in a while preemies get a little too comfortable and forget to breath and have an episode called Apnea. Most times they can be stimulated by a tickle on the foot or a pat on the back. Jack has these every so often, and this is something he’ll grow out of eventually. It’s very scary for us to watch, but we are getting accustomed to it. Other than that, Jack is doing very well with his breathing. He is cycling between CPAP and nasal cannula every few hours. They will continue to decrease the amount of time spent on CPAP and increase the time spent on nasal cannula as the days go by.
Jack weighs 3lbs, 6oz and is getting 29ccs of food every three hours. That’s 1cc shy of a whole ounce! He is getting bigger and changing so much as the weeks go by. He’s getting chubby cheeks and everything!
Jack and mommy got to bond “kangaroo” style this evening! It was a wonderful thing for both of them. Jack was very content and even had his dinner while on her chest.
Every once in a while preemies get a little too comfortable and forget to breath and have an episode called Apnea. Most times they can be stimulated by a tickle on the foot or a pat on the back. Jack has these every so often, and this is something he’ll grow out of eventually. It’s very scary for us to watch, but we are getting accustomed to it. Other than that, Jack is doing very well with his breathing. He is cycling between CPAP and nasal cannula every few hours. They will continue to decrease the amount of time spent on CPAP and increase the time spent on nasal cannula as the days go by.
Jack weighs 3lbs, 6oz and is getting 29ccs of food every three hours. That’s 1cc shy of a whole ounce! He is getting bigger and changing so much as the weeks go by. He’s getting chubby cheeks and everything!
Wednesday, April 16, 2003
Day 42
Day 42
Well, little Jack surprised us again. He was actually off the CPAP today and just got a little assistance from nasal cannula, which just provided oxygen for him to breath. He was on that for over two hours! In fact, the tube wasn’t even hooked up properly so he wasn’t getting any oxygen and only after 15 minutes did his oxygen saturation drop a bit. That’s 15 minutes of breathing without any assistance! What an accomplishment!
Tomorrow they are going to take him off CPAP for a little longer. They’ll continue this until he is off totally. That doesn’t mean that he will never be on it again. In fact, if preemies off CPAP develop an infection, it is not uncommon for them to have to be intubated for a while until their body recovers. We’ll just keep our fingers crossed that this won’t be the case for Jack.
Daddy even got to hold Jack today while he was free of CPAP. He looked up at him and smiled a few times. Jason was making funny noises and singing to him. That made him smile. He was so content all day in his mommy’s arms. He loved it.
When it was time to put Jack back on the CPAP, he was not a happy camper at all. He fought the nasal prongs and tried to pull them out (which he did eventually). But mommy and his nurse settled him down and it seemed like he just accepted the fact.
Soon we will start Kangaroo Care with Jack which is bonding skin to skin. A man from Jason’s work who recently had a preemie said once he started Kangaroo Care with his daughter, she started to progress much more rapidly.
Jack got a new home today as well. It was time for his incubator to be changed and he got an older, less advanced model. He doesn’t seem to mind. We just take it as good news that he doesn’t need all those bells and whistles any more… and now we can see him better.
Well, little Jack surprised us again. He was actually off the CPAP today and just got a little assistance from nasal cannula, which just provided oxygen for him to breath. He was on that for over two hours! In fact, the tube wasn’t even hooked up properly so he wasn’t getting any oxygen and only after 15 minutes did his oxygen saturation drop a bit. That’s 15 minutes of breathing without any assistance! What an accomplishment!
Tomorrow they are going to take him off CPAP for a little longer. They’ll continue this until he is off totally. That doesn’t mean that he will never be on it again. In fact, if preemies off CPAP develop an infection, it is not uncommon for them to have to be intubated for a while until their body recovers. We’ll just keep our fingers crossed that this won’t be the case for Jack.
Daddy even got to hold Jack today while he was free of CPAP. He looked up at him and smiled a few times. Jason was making funny noises and singing to him. That made him smile. He was so content all day in his mommy’s arms. He loved it.
When it was time to put Jack back on the CPAP, he was not a happy camper at all. He fought the nasal prongs and tried to pull them out (which he did eventually). But mommy and his nurse settled him down and it seemed like he just accepted the fact.
Soon we will start Kangaroo Care with Jack which is bonding skin to skin. A man from Jason’s work who recently had a preemie said once he started Kangaroo Care with his daughter, she started to progress much more rapidly.
Jack got a new home today as well. It was time for his incubator to be changed and he got an older, less advanced model. He doesn’t seem to mind. We just take it as good news that he doesn’t need all those bells and whistles any more… and now we can see him better.
Tuesday, April 15, 2003
Day 41
Day 41
Mommy got to hold Jack for three hours today! He did very well in her arms. He was making little faces and smiling. She even got to feed him while she held him.
He gained 40 grams today, but he is still officially at 3lbs 3oz. We are very proud of him.
Even though he is doing very well on the CPAP, it can still be uncomfortable for him and sometimes he tries to pull the prongs out or they just accidentally come out. The nurse just comes over and puts them back in, or we can even put them back in if we are there.
He is so cute when he sucks on his pacifier while he gets fed. He really goes to town. He even sneezes! Everything he is doing is cute! It’s great to hear his sweet voice, even if he is very angry sometimes. Most of the time he is not.
Mommy got to hold Jack for three hours today! He did very well in her arms. He was making little faces and smiling. She even got to feed him while she held him.
He gained 40 grams today, but he is still officially at 3lbs 3oz. We are very proud of him.
Even though he is doing very well on the CPAP, it can still be uncomfortable for him and sometimes he tries to pull the prongs out or they just accidentally come out. The nurse just comes over and puts them back in, or we can even put them back in if we are there.
He is so cute when he sucks on his pacifier while he gets fed. He really goes to town. He even sneezes! Everything he is doing is cute! It’s great to hear his sweet voice, even if he is very angry sometimes. Most of the time he is not.
Monday, April 14, 2003
JACK IS OFF THE VENTILATOR!
Day 40
JACK IS OFF THE VENTILATOR! We were so surprised to see that he was breathing all on his own when we got there today. He is such a strong boy. We’re very proud of him. He seems so much more comfortable now that he doesn’t have that tube down his throat anymore. He actually had his own pacifier and he did a good job breaking it in.
His nurse said that once he gets used to the CPAP, they will gradually wean him off that as well. That process consists of taking him off the CPAP for a few hours at a time and then increasing the length of time that he is off. Towards the end, he will only be on the CPAP for a few hours a day. We really don’t know the timeframe yet. It really depends on how well he does.
It will be great to be able to hold him without being hooked to a breathing tube. Of course he will still be on oxygen, but it will be much easier to take him out of his bed.
Right now he is handling the transition very well. His blood gases are good and the only time we saw his oxygen saturation drop is when he pulled the nasal prongs out. This is not a big deal because the nurses quickly respond and put them back in.
We also heard him cry for the first time and he made cute sounds when he hiccupped after his feeding. Soon he will be crying louder and louder after his vocal cords heal from being intubated. We can’t wait!
JACK IS OFF THE VENTILATOR! We were so surprised to see that he was breathing all on his own when we got there today. He is such a strong boy. We’re very proud of him. He seems so much more comfortable now that he doesn’t have that tube down his throat anymore. He actually had his own pacifier and he did a good job breaking it in.
His nurse said that once he gets used to the CPAP, they will gradually wean him off that as well. That process consists of taking him off the CPAP for a few hours at a time and then increasing the length of time that he is off. Towards the end, he will only be on the CPAP for a few hours a day. We really don’t know the timeframe yet. It really depends on how well he does.
It will be great to be able to hold him without being hooked to a breathing tube. Of course he will still be on oxygen, but it will be much easier to take him out of his bed.
Right now he is handling the transition very well. His blood gases are good and the only time we saw his oxygen saturation drop is when he pulled the nasal prongs out. This is not a big deal because the nurses quickly respond and put them back in.
We also heard him cry for the first time and he made cute sounds when he hiccupped after his feeding. Soon he will be crying louder and louder after his vocal cords heal from being intubated. We can’t wait!
Sunday, April 13, 2003
Day 39
Day 39
Jack is officially 3lbs 3oz today. He is making good progress on his weight gaining between 20 to 40 grams a day. That is just what he should be doing. His blood gases are good again today and that is good news if you want to get off a ventilator.
We ordered Jack’s furniture for his room today from Babies ‘R’ Us. He got a nice crib and changing table/ chest of drawers. It should be ready for pick-up in about two weeks. We need to get a lot ready for his trip home.
Jack was sleeping most of the time while we were there. Once in a while he would open his eyes and look around, stopping briefly to look at us. It is an awesome feeling to make eye contact with your baby. Especially when your baby had to wear a protective mask for the first few weeks and you couldn’t even see his eyes. Everyday, he seems to become more aware of his surroundings and more in tune with his facial expressions. Some people think that they see Jack smile at them. That’s not impossible to believe…Jack has surprised us in many ways so far.
Jack is officially 3lbs 3oz today. He is making good progress on his weight gaining between 20 to 40 grams a day. That is just what he should be doing. His blood gases are good again today and that is good news if you want to get off a ventilator.
We ordered Jack’s furniture for his room today from Babies ‘R’ Us. He got a nice crib and changing table/ chest of drawers. It should be ready for pick-up in about two weeks. We need to get a lot ready for his trip home.
Jack was sleeping most of the time while we were there. Once in a while he would open his eyes and look around, stopping briefly to look at us. It is an awesome feeling to make eye contact with your baby. Especially when your baby had to wear a protective mask for the first few weeks and you couldn’t even see his eyes. Everyday, he seems to become more aware of his surroundings and more in tune with his facial expressions. Some people think that they see Jack smile at them. That’s not impossible to believe…Jack has surprised us in many ways so far.
Saturday, April 12, 2003
Day 38
Day 38
Jack seems to be enjoying the lovely day. He was very content during our visit this today. He now weighs 3lbs, 2oz, and is up to 26ccs of food! He’s a big boy!
His vent settings were lowered again to 25 breaths per minute, and this time his blood work came back a-okay! So they will try him on an even lower setting this evening. He’s well on his way to being off that ventilator.
We want to thank everyone for their continued support, it’s your words and your prayers that are helping our little family stay so strong. We hope everyone has a great weekend!
Jack seems to be enjoying the lovely day. He was very content during our visit this today. He now weighs 3lbs, 2oz, and is up to 26ccs of food! He’s a big boy!
His vent settings were lowered again to 25 breaths per minute, and this time his blood work came back a-okay! So they will try him on an even lower setting this evening. He’s well on his way to being off that ventilator.
We want to thank everyone for their continued support, it’s your words and your prayers that are helping our little family stay so strong. We hope everyone has a great weekend!
Friday, April 11, 2003
Day 37
Day 37
Jack is still at 3lbs 1oz, but did gain 20 grams…just not enough to officially gain an ounce. Tomorrow he will be there though.
Jack is being slowing weaned off the ventilator. They lowered his vent settings to only 25 breaths per minute at around 25% oxygen and then took a measurement of his blood gases. His C02 levels were a bit high so they raised his breaths to 30 times per minute. Tomorrow they will most likely try again. Right now Jack is comfortable with the amount of help the ventilator is giving him. In order to get him off that he has to learn to do more on his own. He has been gradually doing that over the past month, but now they are being a bit more aggressive in their approach. Hopefully next week he will be on CPAP
Jack is still at 3lbs 1oz, but did gain 20 grams…just not enough to officially gain an ounce. Tomorrow he will be there though.
Jack is being slowing weaned off the ventilator. They lowered his vent settings to only 25 breaths per minute at around 25% oxygen and then took a measurement of his blood gases. His C02 levels were a bit high so they raised his breaths to 30 times per minute. Tomorrow they will most likely try again. Right now Jack is comfortable with the amount of help the ventilator is giving him. In order to get him off that he has to learn to do more on his own. He has been gradually doing that over the past month, but now they are being a bit more aggressive in their approach. Hopefully next week he will be on CPAP
Thursday, April 10, 2003
Day 36
Day 36
Jack is tipping the scale at 3lbs, 1oz today! He is doing very well. Angie gave him his bath this afternoon, and took part in a few of his care sessions today. We spent some time with him this evening getting him fed and ready for bed.
The doctors think Jack will be ready to be off the ventilator soon, and on to something called CPAP. This will help him breathe using nasal prongs with oxygen and some ventilator control, but he won’t have to have a tube down his throat and he will be taking all the breaths on his own.
We are so happy to be planning Jack’s homecoming, and we look forward to seeing our friends and family all together at Jack’s party!
Jack is tipping the scale at 3lbs, 1oz today! He is doing very well. Angie gave him his bath this afternoon, and took part in a few of his care sessions today. We spent some time with him this evening getting him fed and ready for bed.
The doctors think Jack will be ready to be off the ventilator soon, and on to something called CPAP. This will help him breathe using nasal prongs with oxygen and some ventilator control, but he won’t have to have a tube down his throat and he will be taking all the breaths on his own.
We are so happy to be planning Jack’s homecoming, and we look forward to seeing our friends and family all together at Jack’s party!
Wednesday, April 09, 2003
Day 35
Day 35
Jack has reached 3 lbs! And, along with his weight gain, there must have been a strength gain as well. Today, without being initially noticed, Jack lifted up his head and turned it completely in the other direction. We’ve seen Jack raise his head off his bed a few times in the past, but nothing to this magnitude. Jack’s nurse was surprised. He shouldn’t be moving his head because he is intubated and the nurses have to totally disconnect him to move him around. But, they looked at his oxygen saturation and there were no problems with that. It will probably be soon when Jack is off the ventilator anyway, so this shouldn’t be a problem in the future. We’re just proud of his accomplishment. Soon he’ll be doing jumping jacks.
Jack has reached 3 lbs! And, along with his weight gain, there must have been a strength gain as well. Today, without being initially noticed, Jack lifted up his head and turned it completely in the other direction. We’ve seen Jack raise his head off his bed a few times in the past, but nothing to this magnitude. Jack’s nurse was surprised. He shouldn’t be moving his head because he is intubated and the nurses have to totally disconnect him to move him around. But, they looked at his oxygen saturation and there were no problems with that. It will probably be soon when Jack is off the ventilator anyway, so this shouldn’t be a problem in the future. We’re just proud of his accomplishment. Soon he’ll be doing jumping jacks.
Tuesday, April 08, 2003
Day 34
Day 34
Jack weighs 2lbs 15 ozs. He gained 40 grams in one day. What a big boy!
Jack was very sleepy tonight. We read him “Goodnight Moon.” He responded by opening his eyes a few times, but then it was back to his slumber.
There isn’t much to report tonight, but Jack is continuing to do very well. We just can’t wait for him to come home.
Jack weighs 2lbs 15 ozs. He gained 40 grams in one day. What a big boy!
Jack was very sleepy tonight. We read him “Goodnight Moon.” He responded by opening his eyes a few times, but then it was back to his slumber.
There isn’t much to report tonight, but Jack is continuing to do very well. We just can’t wait for him to come home.
Monday, April 07, 2003
Day 33
Jack was very alert and active tonight. We took part in his evening care session and helped get him ready for bed. While he was getting dinner we sang “Itsy Bitsy Spider” to him. We’ll have to learn more songs though, because too many encores of that song and it’s permanently stuck in your head!
Jack won his first contest! We e-mailed www.earlybirds.com.au an Australian company and told them Jack’s story. He was chosen as “the preemie of the month” and they are going to send Jack clothing made just for preemies! Very cool for Jack to be winning over hearts all the way in Australia. They haven’t updated their site yet to include Jack’s picture, but we keep checking every day!
Jack was looking all around his isolette tonight. He even made eye contact with us a few times, what a wonderful feeling. As he drifted off to sleep we wished him goodnight.
Jack was very alert and active tonight. We took part in his evening care session and helped get him ready for bed. While he was getting dinner we sang “Itsy Bitsy Spider” to him. We’ll have to learn more songs though, because too many encores of that song and it’s permanently stuck in your head!
Jack won his first contest! We e-mailed www.earlybirds.com.au an Australian company and told them Jack’s story. He was chosen as “the preemie of the month” and they are going to send Jack clothing made just for preemies! Very cool for Jack to be winning over hearts all the way in Australia. They haven’t updated their site yet to include Jack’s picture, but we keep checking every day!
Jack was looking all around his isolette tonight. He even made eye contact with us a few times, what a wonderful feeling. As he drifted off to sleep we wished him goodnight.
Sunday, April 06, 2003
Day 32
Day 32
Jack continues to have a great appetite. He is up to 24 ccs of food now. How much can his little tummy hold anyway? Jack weighed about the same as he did yesterday, only gaining a few grams. We aren’t too concerned because depending on the time he pees, his weight can vary. His doctors say he is steadily gaining weight. As long as it increases, we are happy.
Not much has changed from yesterday, except we are talking more and more about the day when Jack will come home. There’s a big party in the works, so stay tuned.
Jack continues to have a great appetite. He is up to 24 ccs of food now. How much can his little tummy hold anyway? Jack weighed about the same as he did yesterday, only gaining a few grams. We aren’t too concerned because depending on the time he pees, his weight can vary. His doctors say he is steadily gaining weight. As long as it increases, we are happy.
Not much has changed from yesterday, except we are talking more and more about the day when Jack will come home. There’s a big party in the works, so stay tuned.
Saturday, April 05, 2003
Day 31
Day 31
We had a chat with Jack’s primary doctor today and he had some encouraging news. First, if all goes well, Jack may be able to come home even before his due date (June 13th)! This is the first time a doctor mentioned him going home. And late next week, he may even be off his ventilator, so that means no more tube down Jack’s throat and we’ll be able to hear his first cry.
Once again, the doctor reiterated that we won’t know exactly how well Jack will do until he actually reaches the points where his developmental milestones should be…breathing completely on his own, sucking and swallowing reflexes, and ultimately muscular control. There aren’t many tests that can accurately predict how he will be. We just have to take the wait and see approach.
The doctor also said that he is seeing signs that the area of the bleed is starting to clear up. This doesn’t mean that the damage will go away, but instead something called a porencephalic cyst is starting to form. This isn’t necessarily bad news, but just something that happens after an IVH. The cyst basically takes up the space where the bleed occurred.
We left feeling pretty good and optimistic after our talk. We got more assurance that he’s progressing well. His lungs are developing well, he’s taking his food well, and he is growing and getting stronger.
Angie got to hold Jack again and as usual he fell asleep in her arms.
We had a chat with Jack’s primary doctor today and he had some encouraging news. First, if all goes well, Jack may be able to come home even before his due date (June 13th)! This is the first time a doctor mentioned him going home. And late next week, he may even be off his ventilator, so that means no more tube down Jack’s throat and we’ll be able to hear his first cry.
Once again, the doctor reiterated that we won’t know exactly how well Jack will do until he actually reaches the points where his developmental milestones should be…breathing completely on his own, sucking and swallowing reflexes, and ultimately muscular control. There aren’t many tests that can accurately predict how he will be. We just have to take the wait and see approach.
The doctor also said that he is seeing signs that the area of the bleed is starting to clear up. This doesn’t mean that the damage will go away, but instead something called a porencephalic cyst is starting to form. This isn’t necessarily bad news, but just something that happens after an IVH. The cyst basically takes up the space where the bleed occurred.
We left feeling pretty good and optimistic after our talk. We got more assurance that he’s progressing well. His lungs are developing well, he’s taking his food well, and he is growing and getting stronger.
Angie got to hold Jack again and as usual he fell asleep in her arms.
Friday, April 04, 2003
Day 30
Day 30
Jack spent the day lounging around in his bed. He didn’t do too much today. He did get a visit from his neurologist, but that is nothing new for him. He is up to 2 lbs 14 oz. Soon he’ll be about 3 lbs and we are going to throw a party!
Angie and his grandma Josie spent the day with him and Angie got to do his afternoon care which consists of changing his diaper, taking his temp and getting him dressed. He didn’t cause too much of a fuss this time.
We think that he is beginning to react to our voice and touch. We are continuing to touch him while talking to him. This would have been too much for him to bear in the early days, but if he gets too stressed we let him rest.
Tomorrow, April 5 will be his official one month birthday. What a milestone!
Jack spent the day lounging around in his bed. He didn’t do too much today. He did get a visit from his neurologist, but that is nothing new for him. He is up to 2 lbs 14 oz. Soon he’ll be about 3 lbs and we are going to throw a party!
Angie and his grandma Josie spent the day with him and Angie got to do his afternoon care which consists of changing his diaper, taking his temp and getting him dressed. He didn’t cause too much of a fuss this time.
We think that he is beginning to react to our voice and touch. We are continuing to touch him while talking to him. This would have been too much for him to bear in the early days, but if he gets too stressed we let him rest.
Tomorrow, April 5 will be his official one month birthday. What a milestone!
Thursday, April 03, 2003
Day 29
Jack was sleeping comfortably on his belly when we were visiting with him tonight. He had just been through his care session and was just finishing his dinner when we got there. He opened his eyes a few times to say hello, but then it was right back to sleep. We can just sit and stare at him forever!
Jack’s getting 21ccs of formula every three hours, and his ventilator settings are even lower tonight and he is taking more breaths on his own. He is continuing to progress each and every day.
Thanks to everyone for your continued support. It means a lot to us! Have a good night everyone!
Jack was sleeping comfortably on his belly when we were visiting with him tonight. He had just been through his care session and was just finishing his dinner when we got there. He opened his eyes a few times to say hello, but then it was right back to sleep. We can just sit and stare at him forever!
Jack’s getting 21ccs of formula every three hours, and his ventilator settings are even lower tonight and he is taking more breaths on his own. He is continuing to progress each and every day.
Thanks to everyone for your continued support. It means a lot to us! Have a good night everyone!
Wednesday, April 02, 2003
Day 28
Day 28
Jack got his first bath from us tonight! Well, it was more of a wipe down with baby body wash. He didn’t like it too much though. It was probably cold for him. First we washed his face with no soap. Then, we added a little soap and washed the rest of him starting at his head. It only took about 10 minutes. We didn’t even realize that Jack gets baths. He has been getting them every other day for a while now. Now that they know we like to bathe him, they are going to wait and let us do it every time.
We also met Jack’s neurosurgeon for the first time. We never had the opportunity to see him because he usually comes in first thing in the morning to see Jack. He was a jolly fellow and very nice. He said Jack is progressing well from his viewpoint. I think I trust the viewpoint of a neurosurgeon. Every day or two they come in and tap his reservoir and get about 10 ccs of fluid, which is pretty standard.
Jack has pretty good reflexes too. He was staring wide-eyed at his kitty when the nurse at the bed across from him turned on the light. He quickly slammed his eyes shut.
Jack got his first bath from us tonight! Well, it was more of a wipe down with baby body wash. He didn’t like it too much though. It was probably cold for him. First we washed his face with no soap. Then, we added a little soap and washed the rest of him starting at his head. It only took about 10 minutes. We didn’t even realize that Jack gets baths. He has been getting them every other day for a while now. Now that they know we like to bathe him, they are going to wait and let us do it every time.
We also met Jack’s neurosurgeon for the first time. We never had the opportunity to see him because he usually comes in first thing in the morning to see Jack. He was a jolly fellow and very nice. He said Jack is progressing well from his viewpoint. I think I trust the viewpoint of a neurosurgeon. Every day or two they come in and tap his reservoir and get about 10 ccs of fluid, which is pretty standard.
Jack has pretty good reflexes too. He was staring wide-eyed at his kitty when the nurse at the bed across from him turned on the light. He quickly slammed his eyes shut.
Tuesday, April 01, 2003
Day 27
Day 27
Jack is up to 21 ccs of food and weighs 2 lbs 14 oz!
He was being fed while we were there tonight. He tolerated his formula very well. There were a couple of times when it seemed that he had an upset stomach, because in his facial expressions it looked like he wanted to cry. His arms became tense and he clenched his fist. A few times he would grab onto his ET tube and yank. We were nervous that he was going to pull it out. We tried a few times to move his arm away from his face, but he was insistent upon quickly moving it back and keeping his hand tightly clenched on it. The nurse reassured us that babies do not often pull their tubes out. Not often, huh?
Jack is getting much stronger as well. During his times of discontent he will almost raise his head completely off the pillow! When you put your finger in and he grabs it, you almost have to fight to get your finger back.
He especially does not like being changed. But, he doesn’t like being wet either. This creates a conflict for Jack, but ultimately he has to be changed and he responds by becoming the seriously mad, kicking preemie. He soon becomes content in a short time after being snuggly wrapped in his blankets.
Tonight he also learned how much Little Brown Hare loves Big Brown Hare from listening to us read, “Guess How Much I Love You?” He drifted off to sleep midway, so don’t spoil the ending for him.
Jack is up to 21 ccs of food and weighs 2 lbs 14 oz!
He was being fed while we were there tonight. He tolerated his formula very well. There were a couple of times when it seemed that he had an upset stomach, because in his facial expressions it looked like he wanted to cry. His arms became tense and he clenched his fist. A few times he would grab onto his ET tube and yank. We were nervous that he was going to pull it out. We tried a few times to move his arm away from his face, but he was insistent upon quickly moving it back and keeping his hand tightly clenched on it. The nurse reassured us that babies do not often pull their tubes out. Not often, huh?
Jack is getting much stronger as well. During his times of discontent he will almost raise his head completely off the pillow! When you put your finger in and he grabs it, you almost have to fight to get your finger back.
He especially does not like being changed. But, he doesn’t like being wet either. This creates a conflict for Jack, but ultimately he has to be changed and he responds by becoming the seriously mad, kicking preemie. He soon becomes content in a short time after being snuggly wrapped in his blankets.
Tonight he also learned how much Little Brown Hare loves Big Brown Hare from listening to us read, “Guess How Much I Love You?” He drifted off to sleep midway, so don’t spoil the ending for him.
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