Happy Halloween! Madeline had a great time trick or treating and I can honestly say that she was acting completely like herself tonight. Not that she has been acting strange or indifferent, but with everything going on and how well she has handled the situation, it was so nice to see her enjoying the evening. I am guessing that she was enjoying her time walking with me. She is excited for Jack to be home. Tonight she said that she can't wait for all of us to be home again at the same time. It goes to show how important that time as a family really is to her. Steve and I cannot wait for those days!!!
Jack didn't have to dress up for Halloween....he was just himself, the Sleeping Beauty. Yes, Jack still thoroughly enjoys sleeping. He has it mastered. However, the great news is that he is eating by bottle more than his feeding tube. These past 2 days have been big days for Jack. He has officially been able to take full feedings from his bottle. He has made better progress using the side lying technique with feeds. He took 2 full bottles back to back today, which is an accomplishment for our little guy. This morning the Dr. decided that since Jack was able to eat 82% of his maximum the feeding tube could be removed. So, when I entered the room today, I was finally able to see my baby without ANY tubes anywhere on his face. I haven't seen him like this since he was born, since he was placed on CPAP shortly after he was born. Such a pleasant surprise, and if I may, he sure is one handsome little guy. He will be much cuter at home though. ;) A side note: Jack weighs 2970 grams (roughly 6 pounds 8 oz.).
As we are making great progress on his feeds we are getting more anxious to bring him home. On Sunday we were told that they would talk about when Jack could come home on Wednesday during rounds. We are hopeful that he will be home with us before the weekend begins! So, this is a big day for us. We are excited and continue to pray that maybe our baby can join us in our home.
I must say that we have been blessed with the most amazing support system. I do believe that the world is praying for Jack. So many have shared with me that schools, churches, prayer groups and other social groups from all over the world are praying for Jack, and for that we are thankful. Jack had an incredibly rough start to his life, but we are so happy with his progress, his fight to keep on going, and for the skilled hands that worked with him. Cincinnati Children's is a very special place to so many people, and I am proud to say the same about the hospital. If it weren't for the brilliant team that works with Jack on a daily basis, we wouldn't be where we are. We thank God for placing such great professionals in Jack's life to support him as he starts his life, and we believe without any doubt that Jack will grow up to be a normal, healthy boy. As for the wimpy white boy syndrome....we hope that term doesn't stick with him for too long.
Throughout this time we have also neglected our house and our dog. I must thank all of those that have helped us with Carmen so that she is given the love and attention that we cannot give to her now. Thank you! Thank you mom and dad for taking her and helping us with her for the week.....she'll appreciate the haircut and bath...especially since she'll be able to see again! ;) Thank you to our parents and siblings and their families who have all reached out and helped us in some manner. We cannot express how much gratitude we have for what you have done for us. You have dropped everything at times for us just to make life easier for us and we hope you know that we truly appreciate everything. We love you all!
As for Jack....we cannot wait to bring him home. I promise that when our little guy comes home that the world will know. It will be a day filled with emotions for us. We've been dreaming of this day since March 11, 2011 when I found out I was expecting, and the long road that we have traveled to get where we are has been filled with hills and curves. I'll continue to give updates through the week, but I certainly hope the next update says that we are coming home!
Monday, October 31, 2011
Thursday, October 27, 2011
October 27, 2011
Well, nothing major has changed. Jack continues to sleep, sleep, sleep. It certainly seems to be his favorite past time....and quite honestly....something that is driving me crazy. As I admit that I am a control freak, not being able to control this situation has made me lose sleep. No matter how much someone says that you need to sleep, it seems that it gets harder and harder each day, even though he is doing so much better, that he isn't home with us. The Dr.'s continue to remind Steve and I that this is all on Jack's terms. No one can say or even guess when babies get their light bulb moment, but we are ready for him to have his light bulb moment.
As for some side notes, Jack's weight is now 2790 grams. Yes, the hospital does everything in grams and milliliters.....and now we are used to using those units. This past week Jack has been consistently losing weight, so the Dr.'s increased his calories to 24 KCal per ounce. They briefly talked about increasing him to 26 KCal, but the nutritionist convinced the Dr. to hold off on that and give Jack one more day on the 24 KCal. Last night he officially had a weight gain. Of course this made us happy. We hope he continues with this and makes it an upward trend.
We cannot even express our gratitude to those that have supported us in SO MANY ways. We continue to be amazed and overwhelmed with the support. I want to personally thank my friends at work who have made sure that our family is eating a healthy, well-balanced diet. You are all incredible.
This has all certainly taken a toll on all of us and we are exhausted, but again, you make each day work and figure it out. We appreciate your prayers and we continue to pray that Jack finds the urge to wake up and eat...literally. The small things in life that make us happy. We continue to dream about our family being together again in our home....we hope it's sooner rather than later. It seems that the tears that I cry each night help me with this whole process of not having my baby home with the rest of us, but I also appreciate that Jack's issues are no longer life threatening and that we have made a lot of progress.
Sorry I haven't been updating more frequently.....
Until next time...pray for our little guy to find interest in food, to gain weight and to wake up and want to eat.
May God bless all of you!
As for some side notes, Jack's weight is now 2790 grams. Yes, the hospital does everything in grams and milliliters.....and now we are used to using those units. This past week Jack has been consistently losing weight, so the Dr.'s increased his calories to 24 KCal per ounce. They briefly talked about increasing him to 26 KCal, but the nutritionist convinced the Dr. to hold off on that and give Jack one more day on the 24 KCal. Last night he officially had a weight gain. Of course this made us happy. We hope he continues with this and makes it an upward trend.
We cannot even express our gratitude to those that have supported us in SO MANY ways. We continue to be amazed and overwhelmed with the support. I want to personally thank my friends at work who have made sure that our family is eating a healthy, well-balanced diet. You are all incredible.
This has all certainly taken a toll on all of us and we are exhausted, but again, you make each day work and figure it out. We appreciate your prayers and we continue to pray that Jack finds the urge to wake up and eat...literally. The small things in life that make us happy. We continue to dream about our family being together again in our home....we hope it's sooner rather than later. It seems that the tears that I cry each night help me with this whole process of not having my baby home with the rest of us, but I also appreciate that Jack's issues are no longer life threatening and that we have made a lot of progress.
Sorry I haven't been updating more frequently.....
Until next time...pray for our little guy to find interest in food, to gain weight and to wake up and want to eat.
May God bless all of you!
Monday, October 24, 2011
October 24, 2011
Well, another day at the hospital and no major changes. Jack continues to snooze the day away. He is continuing to make progress though. He took 40 ml of his 55 ml from a bottle this morning before falling asleep. This is the best that he has done so far. However, he was so tuckered out from his 9 AM feed that he took 6 ml at 12 noon. So.....we continue to pray that every 3 hours he gains strength and endurance to eat on his own.
During rounds today we did learn that the Dr.'s and his dietician are not satisfied with his weight gain. In order for him to gain more weight they are going to fortify his formula and the breast milk. Instead of the 22 calories per serving they are going to give him 24 calories per serving. At this time he weighs 2785 grams, which is roughly 6 lbs. So, hopefully this will help him gain weight.
Other than that...nothing new. He is still cute as ever and we are still ready for him to come home......more than ever.
Thanks for your continued support and prayers for Jack.....they are working.
During rounds today we did learn that the Dr.'s and his dietician are not satisfied with his weight gain. In order for him to gain more weight they are going to fortify his formula and the breast milk. Instead of the 22 calories per serving they are going to give him 24 calories per serving. At this time he weighs 2785 grams, which is roughly 6 lbs. So, hopefully this will help him gain weight.
Other than that...nothing new. He is still cute as ever and we are still ready for him to come home......more than ever.
Thanks for your continued support and prayers for Jack.....they are working.
Sunday, October 23, 2011
October 23, 2011
It's been a couple of days since we have given an update for Jack. This wasn't intentional.....exhaustion just has the best of us right now. I must say that it's a very tough road to ride on with another child at home. The parent guilt is incredible and you hope and pray that you are doing what is best for both of your children, especially when it's impossible to be with both of them at the same time with our current situation for long periods of time. However, with that being said, Madeline has been AMAZING with coming to the hospital. Steve and I have decided that we don't want to force her to go to the hospital, but give her the option. Ever since Jack has been off of his ventilator and the chest tube was removed she is more interested in visiting Jack since he "looks" like a little baby rather than a "sick little baby". While she is there she enjoys seeing him and holding him. Children's also has activities for siblings to do bedside while they are visiting so those activities have helped pass her time as well. We are blessed to have a little girl that is mature enough to sit in the hospital for 4 to 5 hours and not cause too many problems. Of course, the nurses love to see her there because they don't see siblings too often, and they enjoy her precious smile, bubbly personality and lovely singing voice! I must say though that it's the best feeling having all of us sit at the hospital together and sit as a family. Those moments have been few and far between these past 2 weeks. And.....this is the toughest part for me. When I am with Jack at the hospital, I miss Madeline terribly and when we are home we all miss Jack. It brings me to tears every night.
As for Jack's health, he is doing great. He continues to need no additional support for breathing. At this time he only has his feeding tube. He continues to sleep almost the entire day. This is the big problem. He doesn't wake up to be fed or recognize that he needs to wake up to eat. The nurses attempt to wake him up and try to feed him from a bottle. On the average he is able to take about 10 ml of his 55 ml feeding on his own and then the rest has to be given to him through his feeding tube. He doesn't have the endurance to drink from a bottle. They tell us this is very typical of wimpy little white boys. We are praying that he soon figures this out......but no one knows when it will click. We don't have the option of bringing him home on a feeding tube, but at this point I want him home so badly I would have no problem feeding him through his tube for his feedings.....all in time it will come.
In the past couple of days Jack received some good news. His newborn screening test came back negative.....always a good thing. He also received his hearing test. They did a more extensive hearing test on him since he is a preemie. Instead of just checking for impulses and on the feedback to return, they did a brain stem test on Jack. His hearing checked out beautifully....again, another great thing. They did notice that he has fluid or build up of some sort in his right ear, which could be from the amniotic fluid or the way his ear canal is. They could tell it was in the middle ear or ear canal....so when we get him home and back at the pediatricians they will check that. This is something this is considered very normal and shouldn't be a concern for us.
Steve and I are so thankful for everyone's prayers for Jack and our family. These past 2 weeks have been so hectic for us, but God has been with us helping us get through each day. Even though we are sitting at the hospital and not doing much, it's exhausting. Thank you ALL who have provided dinner for us. It's one less worry for us when we get home and allows us to sit at home with the 3 of us and not have to eat out all of the time. Again, thanks for everything and pray that our little guy soon finds strength in eating and is able to sustain it for several days.
There is nothing more that we want than to bring baby Jack home....we are ready for him and have been! May God bless all of you and your families.
As for Jack's health, he is doing great. He continues to need no additional support for breathing. At this time he only has his feeding tube. He continues to sleep almost the entire day. This is the big problem. He doesn't wake up to be fed or recognize that he needs to wake up to eat. The nurses attempt to wake him up and try to feed him from a bottle. On the average he is able to take about 10 ml of his 55 ml feeding on his own and then the rest has to be given to him through his feeding tube. He doesn't have the endurance to drink from a bottle. They tell us this is very typical of wimpy little white boys. We are praying that he soon figures this out......but no one knows when it will click. We don't have the option of bringing him home on a feeding tube, but at this point I want him home so badly I would have no problem feeding him through his tube for his feedings.....all in time it will come.
In the past couple of days Jack received some good news. His newborn screening test came back negative.....always a good thing. He also received his hearing test. They did a more extensive hearing test on him since he is a preemie. Instead of just checking for impulses and on the feedback to return, they did a brain stem test on Jack. His hearing checked out beautifully....again, another great thing. They did notice that he has fluid or build up of some sort in his right ear, which could be from the amniotic fluid or the way his ear canal is. They could tell it was in the middle ear or ear canal....so when we get him home and back at the pediatricians they will check that. This is something this is considered very normal and shouldn't be a concern for us.
Steve and I are so thankful for everyone's prayers for Jack and our family. These past 2 weeks have been so hectic for us, but God has been with us helping us get through each day. Even though we are sitting at the hospital and not doing much, it's exhausting. Thank you ALL who have provided dinner for us. It's one less worry for us when we get home and allows us to sit at home with the 3 of us and not have to eat out all of the time. Again, thanks for everything and pray that our little guy soon finds strength in eating and is able to sustain it for several days.
There is nothing more that we want than to bring baby Jack home....we are ready for him and have been! May God bless all of you and your families.
Thursday, October 20, 2011
October 20, 2011
Jack continues to make progress in the right direction and we couldn't be happier. Jack's oxygen level was decreased from 2.0 Liters to 1.0 Liters today while we were there. They also shared with us that they needed to change his formula to something with more calories, proteins and fats. So, instead of being on Similac Advanced Shield, he is now on Neosure. This is all based on the fact that he was a 34 weeker. (This is the term that the Dietician and the Dr. used.) There was really nothing else that changed, until we left for the day. Jack was able to be nursed 2 times today, and he is doing fantastic, but he just tuckers out too quickly to be able to eat as much as he needs to keep him full and growing! So, we continue to work on that. While I am not there to nurse him, they are supposed to try bottle feeds with him. Again, since he is asleep so much, this is nearly impossible because he is premature. We know and understand that he needs to sleep to grow, especially since he was 5.5 weeks early. This is very typical, but I would be lying if I didn't say that this isn't frustrating. This seems to be our next big hurdle, and we aren't sure what to expect at all. Every day is so different when it comes to how much awake time he has.
We called to get an evening check on Jack and the nurse shared with me that he is NO LONGER ON OXYGEN! They removed his canula! Yes, this means that he is breathing entirely independent! We couldn't be happier. Pray that he continues to have the strength to do this. While we were gone, the nurse also replaced his feeding tube, as it's been problematic in the past couple of feeds. However, she said the new feeding tube is giving similar issues. So, tomorrow we will be sure to take pictures of Jack with no canula and only his feeding tube! Oh, I cannot wait to see him! I am absolutely positive he is going to be even cuter without his face covered with tagaderm and other tape.
Please continue to pray for Jack and his needs. We need prayers that Jack gains enough strength during feeding to either nurse or bottle feed. The only way we get to bring our baby home is if he is eating and gaining weight. They will not allow him to leave the hospital with a feeding tube, so we are praying that as each day progresses that he is awake enough to feed from a bottle or nurse, and as we do that, we are 1 day closer to coming home. Oh, how we wish and dream to have our baby in our home.
Thanks for your support.....sorry this is so short...I'm simply exhausted and going to bed.
We called to get an evening check on Jack and the nurse shared with me that he is NO LONGER ON OXYGEN! They removed his canula! Yes, this means that he is breathing entirely independent! We couldn't be happier. Pray that he continues to have the strength to do this. While we were gone, the nurse also replaced his feeding tube, as it's been problematic in the past couple of feeds. However, she said the new feeding tube is giving similar issues. So, tomorrow we will be sure to take pictures of Jack with no canula and only his feeding tube! Oh, I cannot wait to see him! I am absolutely positive he is going to be even cuter without his face covered with tagaderm and other tape.
Please continue to pray for Jack and his needs. We need prayers that Jack gains enough strength during feeding to either nurse or bottle feed. The only way we get to bring our baby home is if he is eating and gaining weight. They will not allow him to leave the hospital with a feeding tube, so we are praying that as each day progresses that he is awake enough to feed from a bottle or nurse, and as we do that, we are 1 day closer to coming home. Oh, how we wish and dream to have our baby in our home.
Thanks for your support.....sorry this is so short...I'm simply exhausted and going to bed.
Wednesday, October 19, 2011
October 19, 2011
After spending 10 hours at the hospital today with Jack, we are exhausted. It was another BIG day for the entire family. Jack continues down the right path. Jack was officially taken off of his high flow oxygen canula and is now on the low flow canula. He is on 2.0 Liters with 25% oxygen. Room air is 21%.....and that is the goal. The respiratory therapist today shared that they believe he will be off of the oxygen tomorrow altogether!!! HOORAY ! ! It's one less tube we have to worry about. We are sick of tubes, leads, cords, etc....and so is Jack.
The Dr.'s allowed Jack to breast feed today and he did super! He seemed to know exactly what to do. The only issue is that he is so darn sleepy all of the time, but that doesn't surprise any of us since he is a preemie. Although his weight of 6 lbs. 2 oz. doesn't exactly make him look like a preemie. He is certainly one of the larger babies in there.
We also had another big moment because Jack was finally able to be held by big sister Madeline!! As you can imagine it made us all tear up, and Madeline immediately fell in love. This was her first true interaction with Jack because her previous interactions were very brief because all of his cords, tubes, leads, etc. were frightening to her little 5 year old eyes. She didn't want to leave tonight and insisted that she hold Jack until Jack was ready to go back to his bed. Jack was quite content in her little arms, so I had to tearfully take Jack from her and put him in his crib and we left......which still SUCKS! There is nothing more difficult than having to leave a child at the hospital. I still cry everyday when I leave..I just can't get used to this. We also took our first family picture. I can say that this was an AMAZING feeling and it felt good to have the whole family in one picture, finally. Now, it's no professional photo, but it's my new favorite photo.
This is also a favorite.....she couldn't stop kissing him!
Again, thanks for all of your continued prayers. Jack continues to do so well and we couldn't be more satisfied. We just can't wait to have him home.
The Dr.'s allowed Jack to breast feed today and he did super! He seemed to know exactly what to do. The only issue is that he is so darn sleepy all of the time, but that doesn't surprise any of us since he is a preemie. Although his weight of 6 lbs. 2 oz. doesn't exactly make him look like a preemie. He is certainly one of the larger babies in there.
We also had another big moment because Jack was finally able to be held by big sister Madeline!! As you can imagine it made us all tear up, and Madeline immediately fell in love. This was her first true interaction with Jack because her previous interactions were very brief because all of his cords, tubes, leads, etc. were frightening to her little 5 year old eyes. She didn't want to leave tonight and insisted that she hold Jack until Jack was ready to go back to his bed. Jack was quite content in her little arms, so I had to tearfully take Jack from her and put him in his crib and we left......which still SUCKS! There is nothing more difficult than having to leave a child at the hospital. I still cry everyday when I leave..I just can't get used to this. We also took our first family picture. I can say that this was an AMAZING feeling and it felt good to have the whole family in one picture, finally. Now, it's no professional photo, but it's my new favorite photo.
Again, thanks for all of your continued prayers. Jack continues to do so well and we couldn't be more satisfied. We just can't wait to have him home.
Tuesday, October 18, 2011
October 18, 2011
Jack had a super day, again! When we arrived this morning we were pleasantly surprised to see him in a crib!!! Jack was in a giraffe bed before due to his medical needs, but since he has had his chest tube and ventilator removed, his cords and tubes don't get in the way and can just be laid down in bed next to him. As of today, Jack still has his PICC line in, a feeding tube, and his high flow oxygen canula. We can actually pick him up with out having a nurse around. We also were so happy to see that Jack FINALLY received his first bath this morning. His hair was nice, clean and fluffy. And of course, he smelled like a sweet, little baby. All great things. And another achievement, he can now wear clothes! So now Jack's cousins don't have to think he doesn't like wearing clothes or that we forgot to dress him. ;) When we arrived we also noticed that there was a shirt attached to the end of his bed and on wires. We found out that the preemie shirt was just too tight....another great problem. Jack was officially 6 lbs. 2 oz. at his weigh in last night. He continues to gain weight so we are pleased with that as well.
Tomorrow he may be having his PICC removed. This would mean that he would no longer receive TPN (Total Parental Nutrition) and he would go to full feeds on breast milk. The nurses have been checking to see if Jack has any fluid remaining in his stomach from his NG tube and he has always had an empty stomach, so he is digesting everything that he is receiving. His progress has allowed him to have daily increases in the amount of food he is receiving at each feeding.
His chest xray from 7 AM this morning showed that he had no signs of a pneumothorax in either lung. We are hoping that this is the way it is every day and one less worry for us. The chest xray also allowed the Dr. to no longer see the P.I.E. in either lung. They did comment that Jack's lungs were still hazy but the P.I.E has improved.
They reduced his O2 volume level from 4.0 to 3.0 today. The goal is to get to 2.0. We are almost there! There has been a slight change in how they are going to transition him from this due to humidity and the potential of drying out his nose on a different oxygen canula. We will see what each day brings and how they transition Jack to complete room air.
We also met with one of the Occupational Therapists today in regards to Jack. They wanted to touch base with us about how they will become an important member of the team as we get closer to having Jack feeding from a bottle, and then potentially to nursing. Baby steps......but we like baby steps! They will also include a speech therapist in on the process. As for his current reflex of sucking, he really enjoys his pacifier. This will only help strengthen his sucking reflex when it comes time to being bottle fed.
Steve and I are so pleased with Jack's progress. We also believe that he is making such great progress because of everyone's thoughts and prayers for Jack and our family. Without our support network we couldn't do this. We are exhausted at the end of each day, but ready for whatever tomorrow brings and always anxious to see him. Eventually we will have him home with us....and we can't wait!
Thank you all so much for your prayers. Steve, Madeline, Jack and I certainly appreciate it. Tomorrow is going to be a big day....Madeline is going to visit him and finally be able to hold her baby brother. Stay tuned for some pictures of that special moment tomorrow.
Good Night!
Tomorrow he may be having his PICC removed. This would mean that he would no longer receive TPN (Total Parental Nutrition) and he would go to full feeds on breast milk. The nurses have been checking to see if Jack has any fluid remaining in his stomach from his NG tube and he has always had an empty stomach, so he is digesting everything that he is receiving. His progress has allowed him to have daily increases in the amount of food he is receiving at each feeding.
His chest xray from 7 AM this morning showed that he had no signs of a pneumothorax in either lung. We are hoping that this is the way it is every day and one less worry for us. The chest xray also allowed the Dr. to no longer see the P.I.E. in either lung. They did comment that Jack's lungs were still hazy but the P.I.E has improved.
They reduced his O2 volume level from 4.0 to 3.0 today. The goal is to get to 2.0. We are almost there! There has been a slight change in how they are going to transition him from this due to humidity and the potential of drying out his nose on a different oxygen canula. We will see what each day brings and how they transition Jack to complete room air.
We also met with one of the Occupational Therapists today in regards to Jack. They wanted to touch base with us about how they will become an important member of the team as we get closer to having Jack feeding from a bottle, and then potentially to nursing. Baby steps......but we like baby steps! They will also include a speech therapist in on the process. As for his current reflex of sucking, he really enjoys his pacifier. This will only help strengthen his sucking reflex when it comes time to being bottle fed.
Steve and I are so pleased with Jack's progress. We also believe that he is making such great progress because of everyone's thoughts and prayers for Jack and our family. Without our support network we couldn't do this. We are exhausted at the end of each day, but ready for whatever tomorrow brings and always anxious to see him. Eventually we will have him home with us....and we can't wait!
Thank you all so much for your prayers. Steve, Madeline, Jack and I certainly appreciate it. Tomorrow is going to be a big day....Madeline is going to visit him and finally be able to hold her baby brother. Stay tuned for some pictures of that special moment tomorrow.
Good Night!
Monday, October 17, 2011
Some Pictures of Jack
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| 10-15-11 Jack resting with his intubator tube sticking out his mouth, its so nice to have this out of his mouth and hear him cry. |
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| 10-17-11 Steve holding Jack for the first time. |
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| 10/16/11 Jack and I "Kangarooing". Love every minute of it. |
October 17, 2011
Our new normal is spending the day at Children's Hospital, building B, floor 4, Room D2. We did just that again today. Jack has made amazing progress in the week that he has spent there. Today we were happy to see that the lights were off because Jack's billi levels were back to where they should be. This now meant that he didn't have to wear his cool purple mask, and he didn't have to try to peak through his mask. They are going to continue to increase his feeds because he has been able to tolerate them, and is digesting it all and leaving nothing behind in his stomach. Again, it's always nice to know that his other body systems are functioning properly. Last night around 10 PM Jack's chest tube was water sealed, which means it is one step closer to removal, and allows to see what his chest cavity is doing without support. He had an xray done at 1 AM and it showed NO SIGNS of a pneumothorax in EITHER of his lungs! This is amazing. This was the sole reason for his admission to Children's Hospital NICU. Steve and I were just thrilled when we called in this morning at 4 AM and received the news. We didn't know what to expect on how long he would be water sealed, but during rounds we learned that he would be losing his chest tube today! That is exactly what happened at 12 noon. The fellow to Jack's Dr. came in and removed it. I left for the procedure because I didn't think I could tolerate seeing my baby go through more pain than he has already had to endure, but Steve stayed with him and was a solid rock. Steve said that the hardest part of the procedure was taking the Tagaderm off of his skin, and the rest was easy. He actually fell back asleep during the rest of the procedure and the actual removal of the tube. This was Jack's 2nd chest tube, the first was not successful so they had to change the type of tube that was inserted into his cavity, so now he will have a scar on his left side. Very, very, very minor.......him being with us and being able to breathe on his own is MUCH more important....but when he gets older he will always have that to look at. :) It can be his permanent souvenir.
Since his chest tube was removed today, it made holding him much EASIER! It was one less worry we had when moving him from his giraffe bed to my chest. Today he was officially able to take part in Kangaroo Care.....a special hold for the parent and child. BUT THE BIGGEST NEWS OF ALL TODAY......STEVE WAS FINALLY ABLE TO HOLD HIS SON TODAY FOR THE FIRST TIME. I have been waiting for this moment. I am going to load some pictures of our little Jack....enjoy!
Since his chest tube was removed today, it made holding him much EASIER! It was one less worry we had when moving him from his giraffe bed to my chest. Today he was officially able to take part in Kangaroo Care.....a special hold for the parent and child. BUT THE BIGGEST NEWS OF ALL TODAY......STEVE WAS FINALLY ABLE TO HOLD HIS SON TODAY FOR THE FIRST TIME. I have been waiting for this moment. I am going to load some pictures of our little Jack....enjoy!
Sunday, October 16, 2011
October 16,2011
Today was another busy, exhausting day, but Jack had a super day. We arrived to the hospital in time for rounds and was able to listen to all of the medical information they have on Jack. It's crazy that there is a team of Dr.'s that are so involved in his care on a daily basis. We are becoming more and more used to the terms that they use and what they all mean to Jack and his care. It usually lasts about 10 minutes and it's nice to see his team on a daily basis because we feel like they are really connected to him and his needs. Anyhow during rounds we learned that they were going to exhubate Jack today. I will go into that more later. They also said that today he is officially over his birth weight for the first time, which is another great accomplishment for our little guy. We also learned his Billy levels, which were slightly too high, explaining why he was receiving phototherapy today when we arrived. So, along with that comes a cute little purple mask to shield his little eyes from the LED lights that are shining brightly on him. We are hoping this will only be on 24 hours, but tomorrow his blood test will show more. His chest x-ray showed that his neumothorax on the right side is completely gone and there was nothing present on his left side where his chest tube is located. All good signs for his respiratory system....a big improvement from where we were a couple of days ago. They also stated in the radiology report that his lungs are functioning as they should and Jack is able to inhale and exhale as he should be able to. They also increased his food intake from 13 ml to 20 ml every 3 hours. They also are monitoring how much drainage and air is being extracted from his left lung. If it continues to go well like it has the past 3 or so days, they are considering removing the chest tube tomorrow or Tuesday. So, pray for that. Steve and I believe that if Jack is fussy at all, it's because his chest tube is causing pain or discomfort.
Back to the exhubating. Jack was intubated because he was unable to breathe without support. Today they were confident that Jack could handle on his own with the support of a high flow oxygen canula. So, ten minutes after we were done listening to rounds, Jack's respiratory therapist came and exhubated him. We all said a prayer before they removed it and Jack did AMAZING. We had to listen very quietly in order to hear him cry, but he was crying! Such a pleasant sound to hear again. He is very raspy from being intubated, but nonetheless, he has a voice again! Steve and I were thrilled to hear this from him. They immediately set him up on the new canula. He is now receiving oxygen through his nose which is saturated with warm water. Eventually the goal is to get him to be on a regular oxygen canula, which simply provides oxygen at the same rate as room air. There are more numbers involved, but I won't go into those details. As the day progressed Jack showed how much of a fighter he is. He was breathing on his own throughout the day and needed little reminders to take a breath. He seems happier too and a bit less finicky now that he doesn't have a tube down his throat. This also allows for him to have a pacifier. Our nurse today, Katie, who was amazing, ordered a pacifier for him and when it arrived we gave him the option of having it. He immediately took to it and was sucking away, which will help with self-soothing.
We were able to hold Jack again today....a great feeling to know that the baby you are holding is breathing on his own. It's a whole new thing to know that he is making his chest rise without the support of his ventilator. Jack had lots of visitors today! Good thing he was on his best behavior... :)
Back to the exhubating. Jack was intubated because he was unable to breathe without support. Today they were confident that Jack could handle on his own with the support of a high flow oxygen canula. So, ten minutes after we were done listening to rounds, Jack's respiratory therapist came and exhubated him. We all said a prayer before they removed it and Jack did AMAZING. We had to listen very quietly in order to hear him cry, but he was crying! Such a pleasant sound to hear again. He is very raspy from being intubated, but nonetheless, he has a voice again! Steve and I were thrilled to hear this from him. They immediately set him up on the new canula. He is now receiving oxygen through his nose which is saturated with warm water. Eventually the goal is to get him to be on a regular oxygen canula, which simply provides oxygen at the same rate as room air. There are more numbers involved, but I won't go into those details. As the day progressed Jack showed how much of a fighter he is. He was breathing on his own throughout the day and needed little reminders to take a breath. He seems happier too and a bit less finicky now that he doesn't have a tube down his throat. This also allows for him to have a pacifier. Our nurse today, Katie, who was amazing, ordered a pacifier for him and when it arrived we gave him the option of having it. He immediately took to it and was sucking away, which will help with self-soothing.
We were able to hold Jack again today....a great feeling to know that the baby you are holding is breathing on his own. It's a whole new thing to know that he is making his chest rise without the support of his ventilator. Jack had lots of visitors today! Good thing he was on his best behavior... :)
Saturday, October 15, 2011
October 15, 2011
Today we were able to hold him again. As you can imagine, these are very special moments for us. I have been the only one able to hold him, so I hope that Steve gets his chance soon. We cannot wait to be able to hold him without tubes everywhere and to hear him cry. With him being intubated he cannot cry. You can tell when he gets ticked though. He doesn't like being messed with by the nurses and prefers to be left along. The good news is that he does not act that way when I hold him! Again, another special feeling.
We have been so blessed with the amount of people that are praying for Jack and our family. We certainly appreciate it all so much. It's hard for us to keep up with everyone for many reasons, and one being exhaustion when we get home from the hospital. We hope this blog will allow everyone to stay up to date with Jack and his journey to come home. We cannot wait for him to come home and big sister Madeline is ready for him to be here too.....the hospital isn't a really cool place for a 5 year old to hang out.
We have been so blessed with the amount of people that are praying for Jack and our family. We certainly appreciate it all so much. It's hard for us to keep up with everyone for many reasons, and one being exhaustion when we get home from the hospital. We hope this blog will allow everyone to stay up to date with Jack and his journey to come home. We cannot wait for him to come home and big sister Madeline is ready for him to be here too.....the hospital isn't a really cool place for a 5 year old to hang out.
October 15, 2011
Hello everyone! Welcome to Jack's blog. Steve and I have been blessed with an overwhelming amount of support since Jack has decided to come into the world a tad bit early. So many people have called, e-mailed, text or stopped by the house and we just can't keep up. We spend most of each day with Jack at Cincinnati Children's and go home in the evenings to be with Miss Madeline. This certainly was not expected at all....but here we are and we must move forward so that Jack and his every need is taken care of, as well as making sure that Madeline is not lacking the love and attention that she deserves. Through these past 6 days saying that we are exhausted would be an understatement, but God has given us the strength to get through each day to do what we need to do. For that, we are grateful.
Jack was born on October 10, 2011, at 34.5 weeks gestation. He was born at Christ Hospital and immediately after he was born he displayed signs of distress. They cared for him in the Special Care Nursery at Christ Hospital. This nursery is considered a level 2 nursery. After 24 hours of being at Christ in the nursery, the doctors became concerned with his needs. His first diagnosis is RDS, Respiratory Distress Syndrome. This simply means that Jack has very premature lungs. It was decided that because he had a collapsed lung and air in his chest cavity outside his left lung, a chest tube needed to be inserted. This warranted a move for him from Christ Hospital to Cincinnati Children's NICU. I am not going to go through what Jack has all been through, but rather I will provide you with what we currently have in place for Jack's medical needs and go forth from there.
As of this morning, Jack has a NG tube (feeding tube), a chest tube (to allow the air outside of his lung to be vacuumed out), a PICC line, and he is intubated and on a ventilator (to support his breathing because of his immature lungs). Alot has happened for us to get to where we are today and we are so pleased with Jack's strength and how he is progressing. Certainly every day has not been peaches and cream. I will be throwing out numbers and terms that we have become so familiar with it and I will try to make sure that you understand what we are talking about. This is a situation where you must have a QUICK learning curve when you are thrown into a situation like this. It's been mentally, physically and emotionally draining, but we are willing to do whatever it takes to make sure our little guy makes progress and that each step is a step closer to being healthy and coming home.
Each day the team of Dr.'s and other medical professionals that are on Jack's team do something called rounds. I will begin with what our rounds for Jack was like this morning.
Based on his day yesterday, they are going to continue to lessen the support of the intubator in hopes of weaning him off of the ventilator so he can breathe on his own. This makes us very nervous because we fear that he will not breathe on his own, but we have to keep the faith and trust the Dr.'s in their care of Jack and they know what is best for him. This is one of the MANY things that we are not in control of. They also said that they wanted to increase his feeds today because he tolerated the food yesterday (it was his first day of breastmilk) so they wanted to increase it today. That was doubled today. Based on what we have observed, he seems to be tolerating more calories. It has also increased his wet and dirty diapers, so that is good news for us...we know that those systems are functioning. They have also decreased the amount of oxygen he is receiving through his ventilator. Again, all in hopes of getting him off the ventilator. The good news about his chest tube is that the vacuum that it is hooked up to is showing minimal suction from his lung, which is critical. The chest tube is in place to ensure that his air on the outside of his left lung (there is a technical term but I won't go into that today). His air pocket on the right side has also decreased and the small pocket of air there they believe will be absorbed into his body in the next couple of days. His xray this morning showed that his air pocket on his right has improved and his left cavity is looking great. Throughout this process Jack has had some damage on his lungs because of the trauma and the prematurity of his lungs. It is a condition called P.I.E., an abbreviation for Pulmonary Interstitial Emphysema. It's not the same emphysema that people who smoke would get. This simply means that in the short term he may have to be on oxygen longer or come home on oxygen. It may make him more dependent on oxygen. This is a condition that can improve, so we remain hopeful. As for his PICC, which is in place because of his need for food and antibiotics, may have to be replaced, which we found out right before we left the hospital today. It's because it is going up his neck rather than down his central vein. We will know more tomorrow on how they plan to work this issue out.
Yesterday was the first day that we were actually able to hold Jack. This was a HUGE step. They allowed us to hold him, but it took 3 people to move him to me. The respiratory therapist and 2 nurses moved him yesterday. The fear of moving them is that any of his tubes could become dislodged or disconnected. So, the move is a very careful one at that.
Jack was born on October 10, 2011, at 34.5 weeks gestation. He was born at Christ Hospital and immediately after he was born he displayed signs of distress. They cared for him in the Special Care Nursery at Christ Hospital. This nursery is considered a level 2 nursery. After 24 hours of being at Christ in the nursery, the doctors became concerned with his needs. His first diagnosis is RDS, Respiratory Distress Syndrome. This simply means that Jack has very premature lungs. It was decided that because he had a collapsed lung and air in his chest cavity outside his left lung, a chest tube needed to be inserted. This warranted a move for him from Christ Hospital to Cincinnati Children's NICU. I am not going to go through what Jack has all been through, but rather I will provide you with what we currently have in place for Jack's medical needs and go forth from there.
As of this morning, Jack has a NG tube (feeding tube), a chest tube (to allow the air outside of his lung to be vacuumed out), a PICC line, and he is intubated and on a ventilator (to support his breathing because of his immature lungs). Alot has happened for us to get to where we are today and we are so pleased with Jack's strength and how he is progressing. Certainly every day has not been peaches and cream. I will be throwing out numbers and terms that we have become so familiar with it and I will try to make sure that you understand what we are talking about. This is a situation where you must have a QUICK learning curve when you are thrown into a situation like this. It's been mentally, physically and emotionally draining, but we are willing to do whatever it takes to make sure our little guy makes progress and that each step is a step closer to being healthy and coming home.
Each day the team of Dr.'s and other medical professionals that are on Jack's team do something called rounds. I will begin with what our rounds for Jack was like this morning.
Based on his day yesterday, they are going to continue to lessen the support of the intubator in hopes of weaning him off of the ventilator so he can breathe on his own. This makes us very nervous because we fear that he will not breathe on his own, but we have to keep the faith and trust the Dr.'s in their care of Jack and they know what is best for him. This is one of the MANY things that we are not in control of. They also said that they wanted to increase his feeds today because he tolerated the food yesterday (it was his first day of breastmilk) so they wanted to increase it today. That was doubled today. Based on what we have observed, he seems to be tolerating more calories. It has also increased his wet and dirty diapers, so that is good news for us...we know that those systems are functioning. They have also decreased the amount of oxygen he is receiving through his ventilator. Again, all in hopes of getting him off the ventilator. The good news about his chest tube is that the vacuum that it is hooked up to is showing minimal suction from his lung, which is critical. The chest tube is in place to ensure that his air on the outside of his left lung (there is a technical term but I won't go into that today). His air pocket on the right side has also decreased and the small pocket of air there they believe will be absorbed into his body in the next couple of days. His xray this morning showed that his air pocket on his right has improved and his left cavity is looking great. Throughout this process Jack has had some damage on his lungs because of the trauma and the prematurity of his lungs. It is a condition called P.I.E., an abbreviation for Pulmonary Interstitial Emphysema. It's not the same emphysema that people who smoke would get. This simply means that in the short term he may have to be on oxygen longer or come home on oxygen. It may make him more dependent on oxygen. This is a condition that can improve, so we remain hopeful. As for his PICC, which is in place because of his need for food and antibiotics, may have to be replaced, which we found out right before we left the hospital today. It's because it is going up his neck rather than down his central vein. We will know more tomorrow on how they plan to work this issue out.
Yesterday was the first day that we were actually able to hold Jack. This was a HUGE step. They allowed us to hold him, but it took 3 people to move him to me. The respiratory therapist and 2 nurses moved him yesterday. The fear of moving them is that any of his tubes could become dislodged or disconnected. So, the move is a very careful one at that.
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