Laney got a little boost a few days ago that has made a world of difference. Her doctor decided it would be a good idea to give her a few very small doses of steroid. This was supposed to give her a kick start in getting off the C-PAP, to get strong enough to just be on a nasel candula. It has worked as well as we could have hoped. She has been rock-solid for several days now and, shockingly, may be off the C-PAP for good. She now holds her blood oxygen levels high enough that she does not require C-PAP. We are hoping she can continue this indefinitely.
One thing she hasn't been doing is gaining much weight. We've asked the doctors if there is any coincidence in the steroids and the lack of a lot of weight gain and they said no, so apparently it is just that - coincidence. But she is up to 3lb. 2 oz. and hopefully in the morning she will be up another ounce. She's been getting many different nurses lately and that drives us a little batty but Laney takes it in stride. It is much easier to hold Laney on nasel candula and a lot quieter, so I think she enjoys it better also. We're still taking it day by day but we're hoping this little step forward is permanent. Thanks so much for all the thoughts and prayers, maybe they are as big a part of this as what they are putting in Laney's milk.
Monday, March 30, 2009
Monday, March 23, 2009
A message from Laney:
I have watched and heard my parents doing this "blog" thing over the last 12 weeks. I thought to myself , "Why should they get to have all the fun? I want my turn in the spotlight!" So this is my update. Well I won't restate what they have said but I will update you all from where they left off.
I just wanted to start with an update on how I am doing.
I am actually doing quite well. I made it to the 1300 gram mark. I know I still have a long way to go but I can see that 3 lbs on the horizon and am anxious to get there. Of course I have stored most of what I have gained in my cheeks and even created a new chin! I wonder if there is a limit of how many chins I can have before I obstruct my airway? Anyway, I am still on this stupid C-pap and they are no closer to getting a seal on it than they were a week ago. It is frustrating and my face is tired but I am getting stronger and I know someday soon I will get off this machine and it will just be a thing of the past. I probably won't even remember it. Dr. Snyder has been my doctor the last 3 days. I have not seen him since the night I was born. I think I have a crush on him. I wonder if you always get a crush on the doctor especially when they save your life? He has been great and has increased my feeds to 25ml and started me on albuterol treatments today. They seem to help. I don't seem to dip into the 70's or 60's on oxygen saturation as often and I recover faster when I do desat a little. I really like that doctor. Mommy and daddy think he looks like Clark Kent. To me he is just Superman! What else....Suzy, my nurse, made a new copy of my feet prints yesterday! You thought my feet were big before...holy cow you should see them now! Tomorrow Kim, another nurse, is going to do my hand prints when I fall really asleep. Yesterday I got to lay around with daddy for 2 hours and
today I got to hang out with mommy for 2 hours. I do love getting out of this bed for a while. Today when mommy put me back I woke right up and sat and stared at her while she talked to me for about 20 minutes! Not sure what she was saying but she just kept talking in this high pitched voice that I notice people only use when they talk to me. Strange. I wonder why adults do that? I still have to have this C-pap on when they hold me but I think I am on the verge of not needing it when they hold me. There isn't too much more to report. I mean when you lay around all day in a bed they call the giraffe and you sleep for 23 hours of the day it can be hard to find new stuff to report. For now I am doing good and workin on getting stronger every day. To finish I will show you some pictures of my new belly!
I am actually doing quite well. I made it to the 1300 gram mark. I know I still have a long way to go but I can see that 3 lbs on the horizon and am anxious to get there. Of course I have stored most of what I have gained in my cheeks and even created a new chin! I wonder if there is a limit of how many chins I can have before I obstruct my airway? Anyway, I am still on this stupid C-pap and they are no closer to getting a seal on it than they were a week ago. It is frustrating and my face is tired but I am getting stronger and I know someday soon I will get off this machine and it will just be a thing of the past. I probably won't even remember it. Dr. Snyder has been my doctor the last 3 days. I have not seen him since the night I was born. I think I have a crush on him. I wonder if you always get a crush on the doctor especially when they save your life? He has been great and has increased my feeds to 25ml and started me on albuterol treatments today. They seem to help. I don't seem to dip into the 70's or 60's on oxygen saturation as often and I recover faster when I do desat a little. I really like that doctor. Mommy and daddy think he looks like Clark Kent. To me he is just Superman! What else....Suzy, my nurse, made a new copy of my feet prints yesterday! You thought my feet were big before...holy cow you should see them now! Tomorrow Kim, another nurse, is going to do my hand prints when I fall really asleep. Yesterday I got to lay around with daddy for 2 hours and
today I got to hang out with mommy for 2 hours. I do love getting out of this bed for a while. Today when mommy put me back I woke right up and sat and stared at her while she talked to me for about 20 minutes! Not sure what she was saying but she just kept talking in this high pitched voice that I notice people only use when they talk to me. Strange. I wonder why adults do that? I still have to have this C-pap on when they hold me but I think I am on the verge of not needing it when they hold me. There isn't too much more to report. I mean when you lay around all day in a bed they call the giraffe and you sleep for 23 hours of the day it can be hard to find new stuff to report. For now I am doing good and workin on getting stronger every day. To finish I will show you some pictures of my new belly!Friday, March 20, 2009
The Waiting Game
It looks like Laney is going to be teaching Angie and me the new meaning of patience. Not that she is trying our patience, far from it. She has been doing very well the past week. Getting her weight up and over her birth weight was a wonderful milestone. But we are learning that we will probably have many, many more small, positive milestones to go before we take her home. If you had asked us before this started whether we knew the path would lead this way, we would have said yes, we know it will be a long hard row to hoe. But once you are in it, hoeing that row, it sometimes feels like you're never going to get to the end of that row. It looks more and more like we're going to get there, but we keep trying to steel ourselves to the fact that it is going to take a while. You'd think after 8 weeks of bedrest that we would have learned some patience, but apparently not.
We have much to be thankful for, though. One is that two different nurses have asked to be Laney's primary nurse. When those two are on a shift, they now are almost always assigned to Laney. I had no idea how much better that would make us feel when we go home at night, or when we can't be there every minute of each day, knowing she is in the hands of a nurse we
know, like, and trust. Nearly all the nurses have been great, and getting a little variety sometimes is probably helpful, considering the notion that the more eyes checking on her the better, and considering the crucial role that nurses are playing in Laney's day-to-day progress. But having some consistency does wonders for our piece of mind. Little nuances like the fact that the canula CPAP makes her nose bleed and plug up, and the fact that many of her decelerations in blood oxygen concentration are caused by plugged nasal passages, those are things the nurses remember when they have her over and over again.
These are just two small examples from many to choose from. Bottom line, the consistent nurses care for Laney better because they know what she is like and they see progress or setbacks and can infer why they are occurring. The nurses that only have her once can't put the pieces together quite as well, and it is much harder to go home at night when you don't know the nurse. Thankfully, for yesterday and the next two days, she has the same two nurses on back-to-back 12 hour shifts, so Angie and I are on Cloud 9 with respect to our comfort level with Laney's nurses right now. I know, part of this is probably us just being protective parents, but much of it is real, and makes a world of difference.
One thing this ordeal has shown us is how supportive our friends and family are. We are getting help from every possible direction and we know most of you would like to do even more if you could or if there was more that needed to be done, which thankfully, right now, there is not. We have been overwhelmed on a daily basis with your generosity and compassion and cannot thank you all enough. Despite what we have been through and what is yet to come, we feel so blessed and are so grateful to all of you. Your generosity appears to know no bounds.
The Meyers
We have much to be thankful for, though. One is that two different nurses have asked to be Laney's primary nurse. When those two are on a shift, they now are almost always assigned to Laney. I had no idea how much better that would make us feel when we go home at night, or when we can't be there every minute of each day, knowing she is in the hands of a nurse we
know, like, and trust. Nearly all the nurses have been great, and getting a little variety sometimes is probably helpful, considering the notion that the more eyes checking on her the better, and considering the crucial role that nurses are playing in Laney's day-to-day progress. But having some consistency does wonders for our piece of mind. Little nuances like the fact that the canula CPAP makes her nose bleed and plug up, and the fact that many of her decelerations in blood oxygen concentration are caused by plugged nasal passages, those are things the nurses remember when they have her over and over again.These are just two small examples from many to choose from. Bottom line, the consistent nurses care for Laney better because they know what she is like and they see progress or setbacks and can infer why they are occurring. The nurses that only have her once can't put the pieces together quite as well, and it is much harder to go home at night when you don't know the nurse. Thankfully, for yesterday and the next two days, she has the same two nurses on back-to-back 12 hour shifts, so Angie and I are on Cloud 9 with respect to our comfort level with Laney's nurses right now. I know, part of this is probably us just being protective parents, but much of it is real, and makes a world of difference.
One thing this ordeal has shown us is how supportive our friends and family are. We are getting help from every possible direction and we know most of you would like to do even more if you could or if there was more that needed to be done, which thankfully, right now, there is not. We have been overwhelmed on a daily basis with your generosity and compassion and cannot thank you all enough. Despite what we have been through and what is yet to come, we feel so blessed and are so grateful to all of you. Your generosity appears to know no bounds.
The Meyers
Monday, March 16, 2009
Turning the corner
Sorry we are not keeping up with this blog as often as we want. I just got some new pictures so I will put some of them up soon. Our days seem to fly by between time at the hospital, keeping up with home, and catching up on all the things we have let slide for the last 11 weeks.
Just as a quick update Laney is doing great. It has been a tough week. The first 2 weeks she seemed to be flying along going from ventillator to ventillator making leaps of progress. She was advancing feeds and her lungs were making consistant improvement. It felt like Kevin and I were grabbing her coattails and just getting pulled along for the ride. Well over the last week we hit a plateau. She was still doing well but she is on maximum feeds and her lungs are great they just need to get stronger in order for her to get off the C-pap. Well, the problem is that she hates the C-pap and was spending all her energy fighting it. So we were in a spiral and kind of a standstill. It has been a little discouraging for us to watch. When you couple all that with a lack of sleep I have to say I have done my share of crying this week.
On a brighter note! We seem to have possibly turned a corner. Laney received a blood transfusion yesterday and it seems to be the little push she needed to gain some ground. She is almost back to her birth weight and the episodes of her slowing or suspending her breathing have greatly declined. This is drastically improving her parents stress level. She is still on the C-pap but the doctors are convinced she is on the verge of not needing it anymore. They were no longer letting us hold her while not on the C-pap. It just seemed to wipe her out and set her back. Medically she looks like she should be able to get off the C-pap she just needs the stamina to be able to do it. The doctor today told us to start holding her off the C-pap and only on a nasal canula in order to start testing her and help her build up her muscles so eventually we can get rid of the C-pap altogether. So that is our plan for now. It is great to be able to hold her and see her face all at the same time.
That is it for now. I will get some pictures together and post again soon. Thank you all so much for following along. We are so excited that things are going so well. Thanks for your support!!
The Meyer's
Just as a quick update Laney is doing great. It has been a tough week. The first 2 weeks she seemed to be flying along going from ventillator to ventillator making leaps of progress. She was advancing feeds and her lungs were making consistant improvement. It felt like Kevin and I were grabbing her coattails and just getting pulled along for the ride. Well over the last week we hit a plateau. She was still doing well but she is on maximum feeds and her lungs are great they just need to get stronger in order for her to get off the C-pap. Well, the problem is that she hates the C-pap and was spending all her energy fighting it. So we were in a spiral and kind of a standstill. It has been a little discouraging for us to watch. When you couple all that with a lack of sleep I have to say I have done my share of crying this week.
On a brighter note! We seem to have possibly turned a corner. Laney received a blood transfusion yesterday and it seems to be the little push she needed to gain some ground. She is almost back to her birth weight and the episodes of her slowing or suspending her breathing have greatly declined. This is drastically improving her parents stress level. She is still on the C-pap but the doctors are convinced she is on the verge of not needing it anymore. They were no longer letting us hold her while not on the C-pap. It just seemed to wipe her out and set her back. Medically she looks like she should be able to get off the C-pap she just needs the stamina to be able to do it. The doctor today told us to start holding her off the C-pap and only on a nasal canula in order to start testing her and help her build up her muscles so eventually we can get rid of the C-pap altogether. So that is our plan for now. It is great to be able to hold her and see her face all at the same time.
That is it for now. I will get some pictures together and post again soon. Thank you all so much for following along. We are so excited that things are going so well. Thanks for your support!!
The Meyer's
Monday, March 9, 2009
Holding a miracle
We have come a long way since our last posting. Laney was taken off the ventillator on Thursday night and did FANTASTIC! She is now on C-pap full time. It took a while but she has become more tolerant of the mask she has to wear. She has continued to lose weight. Most of it is water that the doctors wanted to minimize in order to keep her heart from working to hard. She is down to 2lbs. and 1 oz. But she finally made a turn this morning and actually gained 16 grams. I know it doesn't sound like much but she is headed in the right direction. We are very excited. She had been receiving 3 cc of milk every 3 hours and tolerated it great. Today they increased it to 5 cc every 3 hours, so now we are expecting her to start gaining some weight. It will be great to watch her start filling out all that skin. 
We had a pleasant suprise on Sunday when the doctor allowed us to hold her without the C-pap. We got to hold her with just a nasal canula which is a huge step. Her time off the C-pap machine right now is minimal in order to make sure her lungs get as strong as possible but it is fun to hold her and be able to see her face all at the same time.
I even finally got Kevin to hold her the other night. It was great to see! Such a contrast between the two when it comes to size. On cuteness she has him beat by a hair. (sorry hun) We get to hold her a couple times a day. It just depends on how her schedule works out.
Right now we are very thankful for all the progress she has made. One of her doctors even called her a "studette" today. She seems to have suprised them all with her toughness. Don't get me wrong she is still very fragile and we have a long way to go but Kevin and I agree that we seem to have overcome most of the huge hurdles and the rest will resolve itself in time.
For now we will just continue to be patient and just enjoy every day with her as we watch her grow. Thank you to everyone that has been bringing food and gifts. For those of you following along on our journey, your support has been wonderful and encouraging. It really has kept us going when the stress gets a little to intense. We can never thank you all enough. I will leave this update with our only family picture!The Meyers
Thursday, March 5, 2009
Wednesday, March 4, 2009
Laney Renee Meyer
I have to apologize for taking so long to update the blog. It has been a flurry of activity since Laney arrived on Feb 25 at 10:40 pm. She was 2 lb. 9 oz. and 14 1/2 inches long. She was put on a super fancy ventilator called a "jet" until Monday morning. This machine is designed to help her lungs expand and give them some time to develop. She did great. They took her off and put her on a normal ventilator on Monday morning. She loved this. She was a little tired of the pressure associated with the jet. She did so well on the normal vent that they actually extubated her on Monday night and put her on a Cpap machine. Basically she was breathing on her own. She did not much care for this machine. She doesn't much like things on her face. She has a tendency to pull at them whenever she is awake. She is a little fiesty! She stayed on Cpap for about 2 hours but her little lungs were not quite developed enough to blow out the CO2 and they ended up having to reintubate her and put her back on the normal ventilator. Since then she has been doing great. She has weaned off all medications except for her nutrition supplement. As of yesterday she had lost a little weight. She was down to 2 lb 4 oz. Don't let her small size fool you. She is pretty strong and a little stubborn. It is fun to watch. When they turn her she tries to turn back. She even grabs her breathing tube with her feet and tries to pull it out! She is very entertaining to watch. I will try to get some pictures and videos posted soon.
We crossed another milestone last night when they started to feed her. We have been concerned about her tummy but she tolerated it really well and her body seems to be processing it. So now they feed her every 4 hours.
We have not been able to hold her yet but we are hoping that it is coming soon.
Again I apologize for not keeping more updates on this page. I am feeling much better so hopefully I can get moving a little more and give you updates more often. Kevin and I are so grateful for all of you. Everyone has done so much to help it has truly been overwhelming. We are so incredibly lucky and we consider each one of you part of our success so far. I am headed back to the hospital to say goodnight.
Thank you all sooo much!
Love
The Meyer's
We crossed another milestone last night when they started to feed her. We have been concerned about her tummy but she tolerated it really well and her body seems to be processing it. So now they feed her every 4 hours.
We have not been able to hold her yet but we are hoping that it is coming soon.
Again I apologize for not keeping more updates on this page. I am feeling much better so hopefully I can get moving a little more and give you updates more often. Kevin and I are so grateful for all of you. Everyone has done so much to help it has truly been overwhelming. We are so incredibly lucky and we consider each one of you part of our success so far. I am headed back to the hospital to say goodnight.
Thank you all sooo much!
Love
The Meyer's
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