It has been a busy weekend for us. Justin and I have spent lots of good quality time with Cohen yesterday and today. Justin has been working more, so weekends are his opportunity to catch up on Cohen time.
He has done really well this weekend. He is taking at least 2 full bottles by mouth a day. This is awesome progress. The doctor said the nurses or I can try him with a bottle whenever he is awake, so we are hoping he can start taking more and more per day. He is also back down on 2 liters of flow in the vapotherm. Hope he can stay down this time!
I mentioned that the orthopedic doctor came back Thursday. He went ahead and took off Cohen's cast and was thrilled with the progress from being in cast just 6 days. We could really tell a difference in his feet. We were super excited. However, today we noticed they have already turned back to the way they were before. The ortho doctor comes back to check this week, so I am betting he will recast him.
The next big thing for us will be moving to Vanderbilt for the swallowing study. We have no idea when this will happen, but likely sometime this week. Hope to know more about the time frame tomorrow. I have been praying hard over this transition. We are really nervous about the whole ordeal. We hope they will send us back to Baptist after the study, but are told it's not a sure thing.
We will miss all the nurses, doctors, respitory therapist(s) and other NICU parents from Baptist. We have developed some wonderful relationships there. I am sure the Vandy NICU is great, but we are really settled in here after almost 70 days. We have been so blessed to have so many angels in this hospital. It's just so hard to imagine being anywhere else!
Cohen will also miss his next door neighbor and little girlfriend, Emma Claire. Justin and I have developed friendship with her parents. They are so much fun. We have laughed with them all weekend. Cohen and Emma Claire's nurse, Stacy, calls them "brother and sissy". She tells Cohen, "Be good, I am going over to feed Sissy." It cracks me up.
My biggest excitement of the day was giving Cohen a bath for the first time! He usually gets soap baths on the night shift, every few days or so. Stacy and I had so much fun soaping and lotioning him up------we could not stop sniffing him!!!!
I just wanted to say thanks to everyone again for the prayers and kind words. I am reminded today about how many of our friends and family both near and far in need prayers for different things. Please know that even though our family is in a little rough patch, we are still praying and thinking of you all too. Much love to you all.
Sunday, February 28, 2010
Saturday, February 27, 2010
Forgot to mention....
I keep forgetting to tell you about Cohen's amazing weight gain. I looked back at my notes to make sure, but on Feb. 14th he weighed 5 lbs 1 ounce.....now 2 weeks later, he weighs 6 lbs 7 ounces! He is not a tiny baby anymore! They are still pouring the feed to him every 3 hours. He now takes 50 cc's per feeding. He still has almost 3 weeks until his due date, but I think he would have been as big as Ames (8lb 8 ounces).
His cheeks are chubby and full-----he is looking better all the time.
Have a great Saturday!
His cheeks are chubby and full-----he is looking better all the time.
Have a great Saturday!
Friday, February 26, 2010
February 26th
It turned out today was the day. The pediatric ENT from Vandy (Dr. Wooten)came and performed the bronc test on Cohen. Actually, he only did about half of the procedure. He didn't have to intubate him fully, so that was great news. As for results, I am going to do my best to navigate all this for you!
1. Cohen has laringomalaysia (floppy tissue in airway) We expected this would be the diagnosis. This is the reason he can't manage his secretions. Dr. Wooten said he had "pools" of liquid sitting in the back of his throat, causing him to have a hard time taking bottles, etc.
2. The feeding tube (og tube) is apparently irritaing his voice box and causing some swelling. It looks like a G tube may happen after all to give the throat time to heal.
3. He did recommend we transfer to Vanderbilt for the swallowing study. We will probably have to go the end of next week.
All in all, the news could have been much worse. We are not really excited about going to Vandy, as we are comfortable and love Baptist. Hopefully we can be sent back after the procedure.
It was a long day waiting on the doctor. I was a nervous wreck until he actually got there. He was great about answering all our questions and explaining everything in detail to us. After he left, 2 of our doctors spent alot of time helping us muddle through all the info.
I am so thankful for everyone in the NICU. God has blessed us tremendously during this journey so far. We are still praying and hoping for the best!
Thank you all for your love and support. Will update you soon.
1. Cohen has laringomalaysia (floppy tissue in airway) We expected this would be the diagnosis. This is the reason he can't manage his secretions. Dr. Wooten said he had "pools" of liquid sitting in the back of his throat, causing him to have a hard time taking bottles, etc.
2. The feeding tube (og tube) is apparently irritaing his voice box and causing some swelling. It looks like a G tube may happen after all to give the throat time to heal.
3. He did recommend we transfer to Vanderbilt for the swallowing study. We will probably have to go the end of next week.
All in all, the news could have been much worse. We are not really excited about going to Vandy, as we are comfortable and love Baptist. Hopefully we can be sent back after the procedure.
It was a long day waiting on the doctor. I was a nervous wreck until he actually got there. He was great about answering all our questions and explaining everything in detail to us. After he left, 2 of our doctors spent alot of time helping us muddle through all the info.
I am so thankful for everyone in the NICU. God has blessed us tremendously during this journey so far. We are still praying and hoping for the best!
Thank you all for your love and support. Will update you soon.
Thursday, February 25, 2010
February 25th
Cohen is doing well, he is back on 3 liters of flow and around 30% supplemental oxygen on his vapotherm. He is still having some heartrate drops, but not too many. He is having trouble managing his "secretions" in his throat. He doesn't seem to swallow or cough up what he needs to. It will be interesting to see what the bronc study shows, if the Vandy guy ever shows up to do it.....we have been told tomorrow, for sure. Ha! I won't believe it till I see it!
The orthopedic doctor did come today. I had a huge note by his crib for him to call me if I wasn't there. (no way you could miss it) Sure enough, he came when NICU was closed for lunch. Did he call me? Nope. I was pretty bent out of shape. I called his office and his nurse called me back. She couldn't answer my questions so she said she would talk to him and call me back again. Now, in my mind, it would be easier for him to just pick up the phone and call me. I mean, come on! You are treating our tiny baby and you can't even call us??????
Sorry, I am just so frustrated!
However--The ortho doctors notes he left were really positive. He felt like the cast really helped his legs. He will check back in another week. The reason I am trying to call him is to have more detailed info. This report conflicts somewhat with the notes he left last Friday. Will update you when I find out more.
With all this hurry up and wait during the past week, I feel like I am losing focus on what is important with Cohen. I have to remember that he is growing and getting stonger everyday. He is more active and awake. He is really starting to look like a more "typical" newborn. All these things are such a blessing. We are thankful for his progress!!!!
The orthopedic doctor did come today. I had a huge note by his crib for him to call me if I wasn't there. (no way you could miss it) Sure enough, he came when NICU was closed for lunch. Did he call me? Nope. I was pretty bent out of shape. I called his office and his nurse called me back. She couldn't answer my questions so she said she would talk to him and call me back again. Now, in my mind, it would be easier for him to just pick up the phone and call me. I mean, come on! You are treating our tiny baby and you can't even call us??????
Sorry, I am just so frustrated!
However--The ortho doctors notes he left were really positive. He felt like the cast really helped his legs. He will check back in another week. The reason I am trying to call him is to have more detailed info. This report conflicts somewhat with the notes he left last Friday. Will update you when I find out more.
With all this hurry up and wait during the past week, I feel like I am losing focus on what is important with Cohen. I have to remember that he is growing and getting stonger everyday. He is more active and awake. He is really starting to look like a more "typical" newborn. All these things are such a blessing. We are thankful for his progress!!!!
Wednesday, February 24, 2010
February 24th
Just wanted to give a quick update. We have basically spent the last 3 days waiting on doctors. The ENT from Vanderbilt still hasn't come through to do the "bronc" study. Not sure when this will happen now.
We also thought the orthopedic doctor was coming back today to check Cohen's cast. As of now, 9:12 pm, he has not shown up. He did come late last time, so I haven't given up on him yet. Justin and I came home late this afternoon to take Calee and Ames to church tonight. The nurses promised they would have him call me when he comes.
Most of you know, I am not the most patient person on the planet. I am trying to keep my cool with all of this waiting, but it is a challenge. Hopefully tomorrow will be a more productive day!
I'll letcha know!!! Have a good night.
We also thought the orthopedic doctor was coming back today to check Cohen's cast. As of now, 9:12 pm, he has not shown up. He did come late last time, so I haven't given up on him yet. Justin and I came home late this afternoon to take Calee and Ames to church tonight. The nurses promised they would have him call me when he comes.
Most of you know, I am not the most patient person on the planet. I am trying to keep my cool with all of this waiting, but it is a challenge. Hopefully tomorrow will be a more productive day!
I'll letcha know!!! Have a good night.
Monday, February 22, 2010
February 22nd
Yesterday our family was given an amazing gift. After 61 days, Calee was able to meet her little brother! Words can't describe what an exciting and happy time it was for all of us. Watching Calee see Cohen for the first time was truly one of the happiest moments of my life. I am so thankful for doctors with big hearts that made this happen. Justin and I took tons of pictures, and will post them soon.
On a less joyful note, we have gotten some more possible negative information on Cohen. Like I said earlier, the orthopedic doctor came back and casted Cohen's legs Friday night. He apparently told the NICU doctor that he thought the problems with his legs could be neurological. We were shocked to say the least. This is the same doctor that told us he was perfectly fine a month ago.
We do have hope that this is not the case, that he is just taking extra time to get better. Cohen has taken several bottles in the last week. He also can move his arms and legs, cough, cry and focus his eyes on objects. He also has good hearing, which is another good sign.
Today, a pediatric ENT doctor from Vanderbilt was supposed to come and do a "bronc" test on Cohen. This is to see rather or not he has larangomalysia (extra skin/flap in his throat) that could be causing him to have trouble swallowing. We waited all afternoon for this doctor not to show up------not a great first impression! Now, they are thinking he will come Tuesday or Wednesday. We are hoping for the best on this study.
All in all, Cohen is doing well. There are just so many what if's right now. We are trying to keep our spirits up and pray for the best possible outcome. We just know he will be ok!
Thank you for your continued love and prayers. We are so lucky to have such wonderful family and friends to help us through this time.
On a less joyful note, we have gotten some more possible negative information on Cohen. Like I said earlier, the orthopedic doctor came back and casted Cohen's legs Friday night. He apparently told the NICU doctor that he thought the problems with his legs could be neurological. We were shocked to say the least. This is the same doctor that told us he was perfectly fine a month ago.
We do have hope that this is not the case, that he is just taking extra time to get better. Cohen has taken several bottles in the last week. He also can move his arms and legs, cough, cry and focus his eyes on objects. He also has good hearing, which is another good sign.
Today, a pediatric ENT doctor from Vanderbilt was supposed to come and do a "bronc" test on Cohen. This is to see rather or not he has larangomalysia (extra skin/flap in his throat) that could be causing him to have trouble swallowing. We waited all afternoon for this doctor not to show up------not a great first impression! Now, they are thinking he will come Tuesday or Wednesday. We are hoping for the best on this study.
All in all, Cohen is doing well. There are just so many what if's right now. We are trying to keep our spirits up and pray for the best possible outcome. We just know he will be ok!
Thank you for your continued love and prayers. We are so lucky to have such wonderful family and friends to help us through this time.
Sunday, February 21, 2010
Saturday, February 20, 2010
February 20th
Cohen is having a good day with his new cast. He does not seem to mind them, he has spent all day sleeping and taking it easy. They moved the vaoptherm back down to 2 liters. I was not really excited about this, I was hoping they would take him down slower. One of the hardest parts about this is having little to no control over what/how things happen. He is tolerating it just fine so far.
Justin and I are spending the night in Nashville, so we have gotten to spend alot of time with Cohen today. We also got to meet some friends for dinner downtown. It was fun to catch up and visit and have a semi-normal dinner. I only called once during dinner to check on Cohen, so that was pretty good for me!
Justin and I are spending the night in Nashville, so we have gotten to spend alot of time with Cohen today. We also got to meet some friends for dinner downtown. It was fun to catch up and visit and have a semi-normal dinner. I only called once during dinner to check on Cohen, so that was pretty good for me!
Friday, February 19, 2010
Orthopedic update
I don't think I mentioned that the NICU doctor called the pediatric orthopedist to come back and re-check Cohen's little legs and feet again. They felt like they haven't improved enough. We have been waiting on him to come all week, and we just called to check and they said he just left. He went ahead and put casts on both of Cohen's legs. The nurse said they go all the way from the bottom of his diaper to his toes! I am so distraught that I am not there to see them. What doctor comes at 8 pm on Friday night???
Justin's mom and sister are going to visit on the late shift tonight, so I told them to text me a pic asap! This is when it's hard to be so far away! It is all I can do not to jump in the car and see for myself------
I am glad they called him to re-check. I don't want them to miss something that could potentially turn more serious. Hopefully, this will fix the problem.
I will post a pic tomorrow!
Justin's mom and sister are going to visit on the late shift tonight, so I told them to text me a pic asap! This is when it's hard to be so far away! It is all I can do not to jump in the car and see for myself------
I am glad they called him to re-check. I don't want them to miss something that could potentially turn more serious. Hopefully, this will fix the problem.
I will post a pic tomorrow!
February 19th
My computer has been down for a couple of days, so I haven't been able to update. Hopefully we will be getting some better internet service soon!
Several changes have been made for Cohen over the last 2 days. He is back down to 3 liters on the vapotherm, with just a couple of spells. He took almost a whole bottle at the 8 am feeding yesterday, and then more at the 11 am feeding. He did great! Patty, the nurse he has had the last 3 days has been in the NICU for 25 years and she is exceptional, to say the least. She has really pushed him to try and take the bottle. She does not think he has reflux, she believes he has the floppy airway tissue that I told you about earlier in the week. She says they grow out of it, and hopefully he will do so soon. In my own mind, I think if it was really severe, he wouldn't be able to take any of a bottle. That's just me trying to diagnose in Cohen's favor!
This morning, he wasn't able to take the bottle, he kept choking and dropping his heartrate. It really is one step forward and one back. Patty said she would try him again later if he is good and awake. That seems to be the key with him.
On a sad note, my Mom is leaving today after spending 2 weeks with us. We are going to miss her so much. It has been so great having someone with me during the week driving back and forth and to hear all the info I get about Cohen everyday. Also, my house has never been cleaner! She is like an energizer bunny, always doing laundry and organizing.....and she is still recovering from surgery!
Justin and I are hoping to stay in Nashville Saturday night, so we can spend alot of time with Cohen Saturday night and Sunday. Justin has been working all week, so he hasn't been able to see him for a couple of days. He is about to die to get down there! He will think he is so big!
Take Care, I will update you all soon.
Several changes have been made for Cohen over the last 2 days. He is back down to 3 liters on the vapotherm, with just a couple of spells. He took almost a whole bottle at the 8 am feeding yesterday, and then more at the 11 am feeding. He did great! Patty, the nurse he has had the last 3 days has been in the NICU for 25 years and she is exceptional, to say the least. She has really pushed him to try and take the bottle. She does not think he has reflux, she believes he has the floppy airway tissue that I told you about earlier in the week. She says they grow out of it, and hopefully he will do so soon. In my own mind, I think if it was really severe, he wouldn't be able to take any of a bottle. That's just me trying to diagnose in Cohen's favor!
This morning, he wasn't able to take the bottle, he kept choking and dropping his heartrate. It really is one step forward and one back. Patty said she would try him again later if he is good and awake. That seems to be the key with him.
On a sad note, my Mom is leaving today after spending 2 weeks with us. We are going to miss her so much. It has been so great having someone with me during the week driving back and forth and to hear all the info I get about Cohen everyday. Also, my house has never been cleaner! She is like an energizer bunny, always doing laundry and organizing.....and she is still recovering from surgery!
Justin and I are hoping to stay in Nashville Saturday night, so we can spend alot of time with Cohen Saturday night and Sunday. Justin has been working all week, so he hasn't been able to see him for a couple of days. He is about to die to get down there! He will think he is so big!
Take Care, I will update you all soon.
Wednesday, February 17, 2010
February 17th
Cohen has been in the NICU for 8 weeks today. Counting my stay, we have been at Baptist almost 11 weeks....hard to believe it's been so long. In some ways it's going fast, in others it seems forever. He is exactly 36 weeks gestation today---still 30 days from his original due date!
Cohen has had a fairly good day. He got blood transfusions yesterday and today. He was able to take Justin's direct donor blood, so that worked out well. They tweeked his feedings around a bit, and added some rice cereal to try and help with his reflux. The doctor also changed his medicine to zantac instead of reglan for reflux. I hope this can help him digest his feedings and not spit up or have spells. He only had one spell today so far.
The doctor I mentioned in my previous post was in surgery today, so we saw Dr. Kreger, the on call from last week. I explained to her what all info we were given Monday, and she reassured me on several things. She said she still firmly feels Cohen needs more time. He had a rough start to life and it will take him extra time to recover. She feels like talk of G tubes and tracheotomy are premature since he is only 36 weeks today. I felt alot of relief. I am so happy I was able to touch base with her and get some positive information.
All in all, we are having a good week. My mom is here until Friday, so it's been great having someone to ride with me to the hospital during the day when Justin is working.
Hope you like the slideshows I posted earlier in the day. I will try and update more with pictures. Several people have asked me about the pic with Cohen in his crown. The nurses made it for him to wear over his IV in his head! It was so sweet. One of the other pics is Cohen compared to a water bottle a couple of weeks ago! Enjoy!
Cohen has had a fairly good day. He got blood transfusions yesterday and today. He was able to take Justin's direct donor blood, so that worked out well. They tweeked his feedings around a bit, and added some rice cereal to try and help with his reflux. The doctor also changed his medicine to zantac instead of reglan for reflux. I hope this can help him digest his feedings and not spit up or have spells. He only had one spell today so far.
The doctor I mentioned in my previous post was in surgery today, so we saw Dr. Kreger, the on call from last week. I explained to her what all info we were given Monday, and she reassured me on several things. She said she still firmly feels Cohen needs more time. He had a rough start to life and it will take him extra time to recover. She feels like talk of G tubes and tracheotomy are premature since he is only 36 weeks today. I felt alot of relief. I am so happy I was able to touch base with her and get some positive information.
All in all, we are having a good week. My mom is here until Friday, so it's been great having someone to ride with me to the hospital during the day when Justin is working.
Hope you like the slideshows I posted earlier in the day. I will try and update more with pictures. Several people have asked me about the pic with Cohen in his crown. The nurses made it for him to wear over his IV in his head! It was so sweet. One of the other pics is Cohen compared to a water bottle a couple of weeks ago! Enjoy!
Tuesday, February 16, 2010
Monday, February 15, 2010
February 15th
Let me start by saying Cohen has had another good day. He is still on 4 liters of flow and about 25% supplemental oxygen. His Aunt Amy even got to hold him for the first time today! He also had a large explosion while I was changing his diaper, and it literally flew on the floor (and my hand)! It was too funny.
As I have mentioned before, the NICU doctors work 3 weeks on and 3 weeks off. The first week they are back is spent rounding on the "long term" babies, like Cohen. This morning, we met with a new doctor that hasn't seen Cohen in 5 weeks. Let me say this politely.....the last time we saw her, she was leaving on her 3 weeks off, and I was NOT sad to see her go.
That being said, I was prepared for her to be more negative and tell us some worst case scenarios. She did not dissapoint me.
In her defense, Cohen is back on the same settings on the vapotherm as when she left. In her eyes, he hasn't made much progress. She would like to see us go to Vanderbilt sooner than later, and she mentioned problems like laryngomalasia, a condition when he has floppy air way tissue, causing lots of feeding/breathing problems. Then she said he might have to have a tracheotomy and a G tube. Needless to say, I have been busy googling and researching since I got in from the hospital. I have never hoped someone was more wrong in my life----
Justin and I are trying hard to not get worked up over what she said. We have learned that this is just her personality. I think she believes we are in denial, and that we just don't want to see that Cohen could have a permanent disability. She is partly right, I am just not willing to diagnose him until we are CERTAIN. We want to give him every chance to grow and be full term before we put him through unnecessary tests.
Please don't think I am not grateful for the doctor and her care for Cohen. I do think she cares and is knowledgeable, I just think she does not realize how scary this all is for us.
Thank you for caring about our family. We appreciate all of the continued prayers and support.
As I have mentioned before, the NICU doctors work 3 weeks on and 3 weeks off. The first week they are back is spent rounding on the "long term" babies, like Cohen. This morning, we met with a new doctor that hasn't seen Cohen in 5 weeks. Let me say this politely.....the last time we saw her, she was leaving on her 3 weeks off, and I was NOT sad to see her go.
That being said, I was prepared for her to be more negative and tell us some worst case scenarios. She did not dissapoint me.
In her defense, Cohen is back on the same settings on the vapotherm as when she left. In her eyes, he hasn't made much progress. She would like to see us go to Vanderbilt sooner than later, and she mentioned problems like laryngomalasia, a condition when he has floppy air way tissue, causing lots of feeding/breathing problems. Then she said he might have to have a tracheotomy and a G tube. Needless to say, I have been busy googling and researching since I got in from the hospital. I have never hoped someone was more wrong in my life----
Justin and I are trying hard to not get worked up over what she said. We have learned that this is just her personality. I think she believes we are in denial, and that we just don't want to see that Cohen could have a permanent disability. She is partly right, I am just not willing to diagnose him until we are CERTAIN. We want to give him every chance to grow and be full term before we put him through unnecessary tests.
Please don't think I am not grateful for the doctor and her care for Cohen. I do think she cares and is knowledgeable, I just think she does not realize how scary this all is for us.
Thank you for caring about our family. We appreciate all of the continued prayers and support.
Sunday, February 14, 2010
Valentine's Day
Our family is full of love this year for our new little valentine. Cohen was SO great today. He has had an exceptional weekend. No spells at all!! Dr. Kreger was really positive today, saying we just need to give him time and maybe he won't have to go to Vanderbilt at all. She made no changes to his care today.
A new doctor comes on call tomorrow and Dr. Kreger promised she would update her and tell her our plan. I just don't want anyone to try and rush him again. He has shown us he can do things, just at his own pace. He also took 20 cc's of his 11 a.m. bottle today, which is half of his feeding!
Another piece of BIG news is Cohen's weight gain. HE WEIGHED 5 LBS LAST NIGHT! We are soooooo excited about this! Weight gain is so important in preemies, and he has gained 2 whole pounds in his 54 days. That is just amazing!
I have never felt more blessed on Valentine's Day than I do today. I wish all of you love and happiness today and everyday. Thanks for reading and caring about our family!
A new doctor comes on call tomorrow and Dr. Kreger promised she would update her and tell her our plan. I just don't want anyone to try and rush him again. He has shown us he can do things, just at his own pace. He also took 20 cc's of his 11 a.m. bottle today, which is half of his feeding!
Another piece of BIG news is Cohen's weight gain. HE WEIGHED 5 LBS LAST NIGHT! We are soooooo excited about this! Weight gain is so important in preemies, and he has gained 2 whole pounds in his 54 days. That is just amazing!
I have never felt more blessed on Valentine's Day than I do today. I wish all of you love and happiness today and everyday. Thanks for reading and caring about our family!
Saturday, February 13, 2010
February 13th
Sorry I haven't posted in a few days...I actually did write a long winded explanation of things yesterday and my computer went crazy and deleted it!
I was tired and didn't retype it all----
Cohen has had a really good last 2 days. He seems to be feeling much better. His color looks good, and he has had very few spells. His vapotherm is still at 4 liters of flow, and his oxygen is staying low, sometimes he has even been on room air (21%).
I was able to try and feed him a bottle again yesterday, and he took about 14 cc's, so that was great! I was nervous trying it again, since last time he dropped his heartrate and saturation rates so much. He got tired easlily, but he was able to take some of it! Great news!
I also wanted to let you know we found out Justin and his Dad are blood donor matches for Cohen. Justin went and gave the blood Cohen needs this week yesterday. Poor Justin, they really dug at him to get it! His arm looks awful today!
It's amazing all I have learned about blood in the last few days! It is only good for 28 days from the donation date, so Justin's Dad can go and give in a week or so before Cohen needs it again. After you donate, you can't give again for 56 days. If Cohen needs more blood after they both donate, all you friends that are B positive may get lucky and get to donate. (haha) I also found out I can't donate for a year, due to getting a transfusion on Christmas----
I have such a new appreciation for the Red Cross and the blood bank. I have always donated blood, but never fully understood what an awesome organization they are. I am already having daydreams about doing a blood drive next December in honor of Cohen, to give back all the blood he and I have taken from the bank. Is a first birthday party with a "GIVE BLOOD" theme out of the question? Justin say's that is one way to make sure no one will come!
Thank you for loving and caring about our family! I will update again soon.
I was tired and didn't retype it all----
Cohen has had a really good last 2 days. He seems to be feeling much better. His color looks good, and he has had very few spells. His vapotherm is still at 4 liters of flow, and his oxygen is staying low, sometimes he has even been on room air (21%).
I was able to try and feed him a bottle again yesterday, and he took about 14 cc's, so that was great! I was nervous trying it again, since last time he dropped his heartrate and saturation rates so much. He got tired easlily, but he was able to take some of it! Great news!
I also wanted to let you know we found out Justin and his Dad are blood donor matches for Cohen. Justin went and gave the blood Cohen needs this week yesterday. Poor Justin, they really dug at him to get it! His arm looks awful today!
It's amazing all I have learned about blood in the last few days! It is only good for 28 days from the donation date, so Justin's Dad can go and give in a week or so before Cohen needs it again. After you donate, you can't give again for 56 days. If Cohen needs more blood after they both donate, all you friends that are B positive may get lucky and get to donate. (haha) I also found out I can't donate for a year, due to getting a transfusion on Christmas----
I have such a new appreciation for the Red Cross and the blood bank. I have always donated blood, but never fully understood what an awesome organization they are. I am already having daydreams about doing a blood drive next December in honor of Cohen, to give back all the blood he and I have taken from the bank. Is a first birthday party with a "GIVE BLOOD" theme out of the question? Justin say's that is one way to make sure no one will come!
Thank you for loving and caring about our family! I will update again soon.
Wednesday, February 10, 2010
Day 50-February 10th
Hard to believe Cohen has been here for 50 days. I already don't remember life before him!
He only had 1 spell today, and it was a 5 a.m. I set my alarm clock and called every 2 hours during the night, after the bad day yesterday. Needless to say, I am tired today!
My Mom went with me again today, and we sat with him all morning and afternoon. The doctor on this week, Dr. Kreger, spent alot of time talking with us and explaining things. I will try and hit the high points.
She thinks he needs more time, that until he gets to 40 weeks, we won't really know the extent of what he needs. I totally agree with this.
She also helped me understand some things about the Vanderbilt study. Basically, if he goes to Vanderbilt now, and they diagnose him with reflux and swallowing issues, the treatment is exactly what they are doing now. So, we are not going to rush this for a few weeks----somewhat of a relief.
Dr. Kreger was really positive and encouraging. The only negative thing she said is babies with Cohen's lung disease almost always go home with a "G" tube in their stomach. I am hoping he will be an exception, but time will tell us.
Cohen also needs more blood, so we are trying to find a direct donor, due to the blood bank being low. I am a match, but since I had to have a blood transfusion after Cohen was born, I can't donate for 90 days. Justin and his Dad are going tomorrow to be blood typed. If they are not matches, I guess I will be asking all of you 0 and B types to come donate!!!!
We are so thankful Cohen has had a better day. Thank you all so much for your thoughts and prayers. Love to you!
He only had 1 spell today, and it was a 5 a.m. I set my alarm clock and called every 2 hours during the night, after the bad day yesterday. Needless to say, I am tired today!
My Mom went with me again today, and we sat with him all morning and afternoon. The doctor on this week, Dr. Kreger, spent alot of time talking with us and explaining things. I will try and hit the high points.
She thinks he needs more time, that until he gets to 40 weeks, we won't really know the extent of what he needs. I totally agree with this.
She also helped me understand some things about the Vanderbilt study. Basically, if he goes to Vanderbilt now, and they diagnose him with reflux and swallowing issues, the treatment is exactly what they are doing now. So, we are not going to rush this for a few weeks----somewhat of a relief.
Dr. Kreger was really positive and encouraging. The only negative thing she said is babies with Cohen's lung disease almost always go home with a "G" tube in their stomach. I am hoping he will be an exception, but time will tell us.
Cohen also needs more blood, so we are trying to find a direct donor, due to the blood bank being low. I am a match, but since I had to have a blood transfusion after Cohen was born, I can't donate for 90 days. Justin and his Dad are going tomorrow to be blood typed. If they are not matches, I guess I will be asking all of you 0 and B types to come donate!!!!
We are so thankful Cohen has had a better day. Thank you all so much for your thoughts and prayers. Love to you!
Tuesday, February 9, 2010
February 9th Part 2
Cohen's day has been rough. He is continuing to have serious spells. When we got there today he they had already charted 6, and he had 4 more while Justin and I were there. They were not your average, run of the mill spells. These were long and scary.
Needless to say, we were really upset. So was our nurse, Stacy. She chased down the doctor and they sprang into action. They took blood and checked his blood gas level, hermadacrite, and electrolytes. They were all perfect. They also put him back on the high flow nasal cannual (vapotherm) and raised it to 4 liters. Then she ordered more breathing treatments. They also did and x-ray on his chest to check for aspiration and it looked good. All this literally happened in under 30 minutes.
The doctor on call, Dr. Papp, said she thinks they have just pushed him too hard. That they need to slow down and let him learn at his own pace. I pray that she is right and this is what he needs. I feel like the Vanderbilt swallowing studies are looming over our head. I am not sure rather to push to have them now, or wait and see what happens. I sure don't want to put him through the trauma of a transfer that isn't necessary.
I am writing this to ask you to pray. Pray that Cohen can get stronger and overcome obstacles and come home. That he can breathe on his own and not damage his heart or lungs in the meantime.
We are encouraged by all that they are trying. I can't tell you thankful I am for our nurse. Words don't describe what she has done for Cohen.
We love you all and thank you for your prayers for our precious son.
Needless to say, we were really upset. So was our nurse, Stacy. She chased down the doctor and they sprang into action. They took blood and checked his blood gas level, hermadacrite, and electrolytes. They were all perfect. They also put him back on the high flow nasal cannual (vapotherm) and raised it to 4 liters. Then she ordered more breathing treatments. They also did and x-ray on his chest to check for aspiration and it looked good. All this literally happened in under 30 minutes.
The doctor on call, Dr. Papp, said she thinks they have just pushed him too hard. That they need to slow down and let him learn at his own pace. I pray that she is right and this is what he needs. I feel like the Vanderbilt swallowing studies are looming over our head. I am not sure rather to push to have them now, or wait and see what happens. I sure don't want to put him through the trauma of a transfer that isn't necessary.
I am writing this to ask you to pray. Pray that Cohen can get stronger and overcome obstacles and come home. That he can breathe on his own and not damage his heart or lungs in the meantime.
We are encouraged by all that they are trying. I can't tell you thankful I am for our nurse. Words don't describe what she has done for Cohen.
We love you all and thank you for your prayers for our precious son.
February 9th
I meant to write last night and got so excited over all the snow I forgot! I would say Cohen's day was average. He has some congestion in his throat and chest, and is still having spells, but he did gain more weight.
My mom (LuLu) came down yesterday for the first time since her surgery. She could not wait to see Baby CoCo, as she calls him. He was excited to see her too, so excited he forgot to breathe for a couple minutes. They had to get that awful bag out again. This was by far and away the worst spell I have ever seen him have. Poor LuLu was not ready for this---
The only major info I got yesterday is they are putting off the MRI for another week. The doctors want him to stabilize more before putting him in the machine. I think this is a good choice, I am somewhat relieved they are waiting.
We are still working on him with the bottle, and he took a little from it yesterday.
I better go and get the kids up, I let Calee stay up way too late thinking school would be out for snow! I have noticed all my post show the wrong time, it's seems to post pacific time...I am trying to figure out how to change it!
Have a good day!
My mom (LuLu) came down yesterday for the first time since her surgery. She could not wait to see Baby CoCo, as she calls him. He was excited to see her too, so excited he forgot to breathe for a couple minutes. They had to get that awful bag out again. This was by far and away the worst spell I have ever seen him have. Poor LuLu was not ready for this---
The only major info I got yesterday is they are putting off the MRI for another week. The doctors want him to stabilize more before putting him in the machine. I think this is a good choice, I am somewhat relieved they are waiting.
We are still working on him with the bottle, and he took a little from it yesterday.
I better go and get the kids up, I let Calee stay up way too late thinking school would be out for snow! I have noticed all my post show the wrong time, it's seems to post pacific time...I am trying to figure out how to change it!
Have a good day!
Sunday, February 7, 2010
February 7th
I don't know where to start. Since writing on Friday, we have gotten lots of information about Cohen. Some is good, some, not so good.
Bare with me, I know this is a lot of information. Cohen has several obstacles in front of him before he can come home safetly.
1. Getting off the Nasal Cannula (vapotherm) and supplelmental oxygen.
He is doing great with this, down to 2 liters and gone from "high flow cannual" to "regular wall oxygen cannula" today. Keeping fingers crossed that he can be completely off breathing help within 2 weeks. He still will likely come home on some supplemental oxygen.
2. Be able to take all feedings from a bottle
This part is tricky. The doctor thinks he may have a swallowing problem. She gave us several "scenarios" yesterday. First step is having an MRI on his brain this week to rule out central nervous system issues. They will have to take him downstairs to the MRI machine, and he will be in it for a few minutes with no machines. Extremely scary to me, but doctor assures us he will have a complete NICU team with him. Next, he could have to transfer to Vanderbilt to have test done by a pediatric swallowing specialist (yes, there is such a thing!) They are treating him right now for reflux. We hope this is all he has, nothing more complex. Dr. Fish is giving him 1 week to try and master the bottle, and if he can't we will move forward to the Vandy testing, depending on what the MRI reveals.
The good news on this is he took part of a bottle yesterday, with an EXTREMELY patient nurse working with him for over an hour. (Stacy, the red headed nurse I have talked about before, she is amazing.) So this gave us some hope that he might just need more time.
3. Stop the apnea spells
Again, this is subjective. His spells may be related to reflux, but we won't know until after MRI and more tests. We are still hoping they will just diminish, since he is almost 35 weeks gestation.
These are the big issues right now, there are some other less significant factors that I won't spell out.
Cohen continues to gain weight and grow at a fast pace. He weighs 4 lbs 8 ounces today. We have so many things to be thankful for, we are trying not to worry too much about the what if's----
Thank you for your continued support and prayers. We just couldnt make it without all of you.
Bare with me, I know this is a lot of information. Cohen has several obstacles in front of him before he can come home safetly.
1. Getting off the Nasal Cannula (vapotherm) and supplelmental oxygen.
He is doing great with this, down to 2 liters and gone from "high flow cannual" to "regular wall oxygen cannula" today. Keeping fingers crossed that he can be completely off breathing help within 2 weeks. He still will likely come home on some supplemental oxygen.
2. Be able to take all feedings from a bottle
This part is tricky. The doctor thinks he may have a swallowing problem. She gave us several "scenarios" yesterday. First step is having an MRI on his brain this week to rule out central nervous system issues. They will have to take him downstairs to the MRI machine, and he will be in it for a few minutes with no machines. Extremely scary to me, but doctor assures us he will have a complete NICU team with him. Next, he could have to transfer to Vanderbilt to have test done by a pediatric swallowing specialist (yes, there is such a thing!) They are treating him right now for reflux. We hope this is all he has, nothing more complex. Dr. Fish is giving him 1 week to try and master the bottle, and if he can't we will move forward to the Vandy testing, depending on what the MRI reveals.
The good news on this is he took part of a bottle yesterday, with an EXTREMELY patient nurse working with him for over an hour. (Stacy, the red headed nurse I have talked about before, she is amazing.) So this gave us some hope that he might just need more time.
3. Stop the apnea spells
Again, this is subjective. His spells may be related to reflux, but we won't know until after MRI and more tests. We are still hoping they will just diminish, since he is almost 35 weeks gestation.
These are the big issues right now, there are some other less significant factors that I won't spell out.
Cohen continues to gain weight and grow at a fast pace. He weighs 4 lbs 8 ounces today. We have so many things to be thankful for, we are trying not to worry too much about the what if's----
Thank you for your continued support and prayers. We just couldnt make it without all of you.
Friday, February 5, 2010
February 5th
I am hanging out in the NICU waiting room with Ames while Justin is in with Cohen. Cohen is still doing well, but has had a harder couple of days since my last blog.
Since moving to the crib, he has to lay swaddled on his back and side. He DOES NOT like it! He loves his belly! So, he has had lots and lots of spells. I guess that's his way of complaining.
I did get to try and give him his first bottle this morning. He sucked on it perfectly, but dropped his heartrate almost instantly. This is what we expected, since he is still so young. He should have 6 more weeks before he has to worry about this! Poor thing, we are pushing him so hard I sometimes have to stop and think he is just 34 weeks gestation.
Dr. Fish says he is doing fine, we just need to get rid of the spells (he had 8 last night) and reflux. She said it will just take time.
I did have lots of fun changing him into a precious outfit and hat this morning. Several friends have sent him preemie clothes, and 2 of my awesome neighbors ( JoJo and Phyl Ferg) bought every preemie outfit in Murfreesboro yesterday. Cohen is completely decked out!
Hope you all have a great Friday!
Since moving to the crib, he has to lay swaddled on his back and side. He DOES NOT like it! He loves his belly! So, he has had lots and lots of spells. I guess that's his way of complaining.
I did get to try and give him his first bottle this morning. He sucked on it perfectly, but dropped his heartrate almost instantly. This is what we expected, since he is still so young. He should have 6 more weeks before he has to worry about this! Poor thing, we are pushing him so hard I sometimes have to stop and think he is just 34 weeks gestation.
Dr. Fish says he is doing fine, we just need to get rid of the spells (he had 8 last night) and reflux. She said it will just take time.
I did have lots of fun changing him into a precious outfit and hat this morning. Several friends have sent him preemie clothes, and 2 of my awesome neighbors ( JoJo and Phyl Ferg) bought every preemie outfit in Murfreesboro yesterday. Cohen is completely decked out!
Hope you all have a great Friday!
Wednesday, February 3, 2010
February 3rd
WOW! Cohen has had another big day of progress! He has moved to a open top crib AND got to put on clothes for the first time! He looked so big in the crib and clothes, it almost made me forget he is not a full term baby! It was a wonderful day, to say the least.
Cohen has had some spells today, with the excitement of moving beds and all....but he is still hanging in there at 2 liters of flow on the vapotherm and anywhere from 25-40 on his supplemental oxygen. I know I keep saying this, but hopefully they will start him with a bottle soon.
He is having some trouble with reflux, since we started supplementing with formula. My supply has gone down, but I am still working on getting it back. He is getting half formula and half my milk right now. I am a little distraught over this but trying to stay calm and hope for the best!
The progress helps me to remember there is a light at the end of this tunnel. Cohen will get to come home. I feel so blessed right now I could pop.
Love and Blessings to all of you.
Cohen has had some spells today, with the excitement of moving beds and all....but he is still hanging in there at 2 liters of flow on the vapotherm and anywhere from 25-40 on his supplemental oxygen. I know I keep saying this, but hopefully they will start him with a bottle soon.
He is having some trouble with reflux, since we started supplementing with formula. My supply has gone down, but I am still working on getting it back. He is getting half formula and half my milk right now. I am a little distraught over this but trying to stay calm and hope for the best!
The progress helps me to remember there is a light at the end of this tunnel. Cohen will get to come home. I feel so blessed right now I could pop.
Love and Blessings to all of you.
Tuesday, February 2, 2010
February 2nd
Baby Cohen's progress has really sped up over the last few days. The doctor turned his vapotherm down from 3 to 2 liters of flow today. He has done great so far!Soon he will need no help breathing! YAY!
Now, he just has to try to take a bottle. Hopefully the blood he got yesterday will supercharge him and he can learn fast!
Justin's parents went to Nashville with us today. His mom even got to hold Cohen for the first time. It was great to see Mayma finally hold her new grandson. They were so excited to see how much he has grown.
As far as us moving Cohen closer, I haven't gotten a call back from the Murfreesboro hospital, I guess if they never call back it will make our choice easy.
I am hesitant to mention this next thing, I don't want to jinx anything...but there is talk of him moving to a "big boy" crib tomorrow! Wow!!!!The thought of him being out in a real crib is amazing. Another great step forward.
Love to you all! Will let you know what happens tomorrow!
Now, he just has to try to take a bottle. Hopefully the blood he got yesterday will supercharge him and he can learn fast!
Justin's parents went to Nashville with us today. His mom even got to hold Cohen for the first time. It was great to see Mayma finally hold her new grandson. They were so excited to see how much he has grown.
As far as us moving Cohen closer, I haven't gotten a call back from the Murfreesboro hospital, I guess if they never call back it will make our choice easy.
I am hesitant to mention this next thing, I don't want to jinx anything...but there is talk of him moving to a "big boy" crib tomorrow! Wow!!!!The thought of him being out in a real crib is amazing. Another great step forward.
Love to you all! Will let you know what happens tomorrow!
Monday, February 1, 2010
February 1st
Wow. Hard to believe January is behind us. Seems like time is going at warp speed.
Baby Cohen is still doing well, not many changes, but he is getting a blood transfusion today. This is his 3rd transfusion since birth. He did have 2 spells today, but that's not out of the ordinary.
My heart is heavy again today.
Yesterday I told you about the sweet couple next to us losing their precious son. Today we found out another NICU parent and friend lost her baby as well. Another little boy. The mother, Katie, was on the antepartum floor with me before our sons were born. Her baby was born on New Years Eve, and was just over a pound. This was her first baby, and she has been so excited about his progress. Justin and I just talked to her last week and he was doing pretty well. It's amazing how fast things can happen, and I ask you to pray for Katie and her husband. Like the couple I mentioned yesterday, they are wonderful people with great love for their son. Sometimes reality is so hard.
Justin and I are weighing to pros and cons of possibly moving Cohen to Murfreesboro NICU. The doctors agree he is stable enough for the move. I am hoping to tour and ask questions in the next few days. I am not even sure this is possible, our insurance may or may not pay for transport. Also, we would be changing doctors, respiratory therapists and ovcourse nurses. He is doing so well at Baptist I am scared to change, but being in M'Boro means lots more time to visit and spend with Cohen. Hopefully we will make the best choice for Cohen.
Please keep Cohen and all the babies in NICU in your prayers. We are grateful for your love and support.
Baby Cohen is still doing well, not many changes, but he is getting a blood transfusion today. This is his 3rd transfusion since birth. He did have 2 spells today, but that's not out of the ordinary.
My heart is heavy again today.
Yesterday I told you about the sweet couple next to us losing their precious son. Today we found out another NICU parent and friend lost her baby as well. Another little boy. The mother, Katie, was on the antepartum floor with me before our sons were born. Her baby was born on New Years Eve, and was just over a pound. This was her first baby, and she has been so excited about his progress. Justin and I just talked to her last week and he was doing pretty well. It's amazing how fast things can happen, and I ask you to pray for Katie and her husband. Like the couple I mentioned yesterday, they are wonderful people with great love for their son. Sometimes reality is so hard.
Justin and I are weighing to pros and cons of possibly moving Cohen to Murfreesboro NICU. The doctors agree he is stable enough for the move. I am hoping to tour and ask questions in the next few days. I am not even sure this is possible, our insurance may or may not pay for transport. Also, we would be changing doctors, respiratory therapists and ovcourse nurses. He is doing so well at Baptist I am scared to change, but being in M'Boro means lots more time to visit and spend with Cohen. Hopefully we will make the best choice for Cohen.
Please keep Cohen and all the babies in NICU in your prayers. We are grateful for your love and support.
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