So as I wrote a few weeks ago, during a routine cardioechogram the cardiolgist discovered that Eden had a heart defect called an Atrial Septal Defect (ASD). On the cardiologists report he noted that the right side of her heart was slightly enlarged because of the way it was pumping blood through the ASD. In addition, there appeared to be some pulmonary hypertension (increased pressure in the lungs).
So to make a long story short, we discussed a plan to close the hole in her heart if the problems continued to get worse. The cardiologist said at the time that it wasn't something that needed to be treated immediately, but that we would need to follow up to make sure the hypertension wasn't getting worse. So in the meantime they were giving Eden a little more oxygen to make sure she stayed above 95% in the hopes that it would decrease the amount of work her heart was doing. (I hope this very condensed version of the story is all making sense!)
So her first follow-up echo was done on Friday and it looks like there has been some improvement! The cardiologist said the hypertension has gone down and he feels there's a good chance that the hole will close on it's own over time without having to do the procedure. He wants to do another follow-up echo in three months to check things out again, but it looks like we are ok to put this problem on the back burner for a while! Yeah! One more thing to check off the list!
I'm so glad we didn't go forward with the procedure when they first presented the problem. It was a hard decision for us to make at the time because this was before we had done the trach and they thought there was a chance that the problem with her heart could be contributing to her breathing problems. We are just so grateful that we made the choices we did, and we are thankful to the people who helped us make those decisions!
Monday, September 28, 2009
Saturday, September 26, 2009
Overcoming the overwhelming sleepy factor
The whole feeding thing has been interesting the last couple days. Even though we try every three hours, it seems that her pattern is to only be awake enough to really try just once a day. Yesterday's successful feed resulted in 30 ccs. Today's successful feed resulted in 40 ccs so at least we are improving! I just can't think about the fact that she needs to be taking close to 70 every three hours before they will let us out of there! Oh dear...
Here are some pictures from our good feeding session today:
She seems to like this weird sideways position. Well at least she did today - who knows what tomorrow will bring.
She has to take frequent breaks though. Isn't she cute? :o)
The rest of the day she was just way too sleepy. Not only sleepy, but covering her mouth to make sure I don't stick anything in there when she's not looking.
And yes, she still has her "stop hands" and she uses them frequently.
Here are some pictures from our good feeding session today:
She seems to like this weird sideways position. Well at least she did today - who knows what tomorrow will bring.
She has to take frequent breaks though. Isn't she cute? :o)
The rest of the day she was just way too sleepy. Not only sleepy, but covering her mouth to make sure I don't stick anything in there when she's not looking.
And yes, she still has her "stop hands" and she uses them frequently.
Friday, September 25, 2009
The sleepy princess...
I have been looking forward to the first feeding for a long time now. Wednesday was supposed to be the big day, but once again Eden was sure to remind us that she is in charge and we have to do things according to her schedule.
She was awake a lot Wednesday morning, and then had a pretty busy afternoon with her first trach change (I can discuss that in a bit) so I was a little concerned that she would be a little sleepy for the planned 6 pm feeding. Well, I was right - check this out...
We tried everything to wake this little gal up; cold wipes and a diaper change, taking her temperature in her armpit(which she usually hates), tickling her feet and legs, sitting up, patting... you get the picture. It was a no go.
So then we decided that we would try on Thursday at her noon feeding.
The time was quickly approaching and she was awake and rooting around good, and working pretty hard on her pacifier. Unfortunately we had to wait for a respitory therapist to come by and take her off her trach collar and put her back on the ventilator before we could start. I was starting to get impatient because they were taking forever to come back and I felt we were losing our window of opportunity!
Sure enough, 45 minutes later when we could finally start she was sleepy again so we were trying to keep her awake and manuver around the big ventilator connections to try to get her comfortable enough to latch on.... yeah, it was interesting. It went ok for the first time, or so they say. The comfort everyone has offered is that it's hard to teach a baby to breastfeed under normal circumstances so she did pretty good with what we had to work with.
So then at her 6pm feed yesterday we decided to try a bottle instead to see how well she would do with that. Turns out it was a little more successful and she ended up drinking 8 ccs from the bottle. That was considered a success.
So today I decided to get here bright and early to try to breastfeed again at her 9 am feeding when she is usually very awake and alert. However, as a first, she decided she didn't want to be a morning person today and she refused to wake up again - go figure. (Eden, someday I'll get you back for this!) :o) I tried my best to wake her up again though and she was able to latch on a little better today, but she was just too sleepy to really do much once she was there!
So then we also tried a bottle to see if she would take that. She ended up getting about 4 ccs. I would say it wasn't a complete failure, but I was hoping for some improvement from yesterday. Oh well, the day is early... we still have time to keep trying today!
Ok so I must say, some may judge me about the whole bottle vs. breastfeeding thing and that's ok. My hope and plan was to breastfeed her all the time, and don't get me wrong, I'm not giving up yet on breastfeeding. However, I'm getting to a point of desperation to be home that I don't care if I have to continue to pump and feed her breastmilk through a bottle. We just want to be home and if it's easier for her to pick up feeding through a bottle than we can go home sooner so it's worth it to me!
We will press forth on the feeding battlefront and hopefully we will start to see some improvement with either source!
So the first trach change on Wednesday went well. ENT says that she looks like she is healing well and everything looked good. Next week it will be my turn! (The actual trach gets changed once a week, and the straps and bandages get changed twice a day for now, and once a day by the time we're home).
Yesterday I changed the strap and her bandages and did skin care for the first time, but I had the help of our trach nurse Jo Anne. Today though I'm on my own so I hope I remember all the right steps and instructions! I don't think it will take too long to get the routine down, but right now it seems very daunting!
I think I also forgot to mention that she had another eye exam a week or so ago and they said her retinas are finally mature and have grown the way they should. The best news of all is that they don't see any retinopothy, which is a very frequent problem with preemies. She is now good to go and won't need another eye exam for three months! Yea! One more thing out of the way!
And finally, to wrap things up for today I have to post the picture of Eden and grandpa. He has been a very frequent visitor but just held her yesterday for only the second time. So grandpa, even though she sleeps through almost all your visits, she does love you and appreciates you coming to see her. :o)
She was awake a lot Wednesday morning, and then had a pretty busy afternoon with her first trach change (I can discuss that in a bit) so I was a little concerned that she would be a little sleepy for the planned 6 pm feeding. Well, I was right - check this out...
We tried everything to wake this little gal up; cold wipes and a diaper change, taking her temperature in her armpit(which she usually hates), tickling her feet and legs, sitting up, patting... you get the picture. It was a no go.
So then we decided that we would try on Thursday at her noon feeding.
The time was quickly approaching and she was awake and rooting around good, and working pretty hard on her pacifier. Unfortunately we had to wait for a respitory therapist to come by and take her off her trach collar and put her back on the ventilator before we could start. I was starting to get impatient because they were taking forever to come back and I felt we were losing our window of opportunity!
Sure enough, 45 minutes later when we could finally start she was sleepy again so we were trying to keep her awake and manuver around the big ventilator connections to try to get her comfortable enough to latch on.... yeah, it was interesting. It went ok for the first time, or so they say. The comfort everyone has offered is that it's hard to teach a baby to breastfeed under normal circumstances so she did pretty good with what we had to work with.
So then at her 6pm feed yesterday we decided to try a bottle instead to see how well she would do with that. Turns out it was a little more successful and she ended up drinking 8 ccs from the bottle. That was considered a success.
So today I decided to get here bright and early to try to breastfeed again at her 9 am feeding when she is usually very awake and alert. However, as a first, she decided she didn't want to be a morning person today and she refused to wake up again - go figure. (Eden, someday I'll get you back for this!) :o) I tried my best to wake her up again though and she was able to latch on a little better today, but she was just too sleepy to really do much once she was there!
So then we also tried a bottle to see if she would take that. She ended up getting about 4 ccs. I would say it wasn't a complete failure, but I was hoping for some improvement from yesterday. Oh well, the day is early... we still have time to keep trying today!
Ok so I must say, some may judge me about the whole bottle vs. breastfeeding thing and that's ok. My hope and plan was to breastfeed her all the time, and don't get me wrong, I'm not giving up yet on breastfeeding. However, I'm getting to a point of desperation to be home that I don't care if I have to continue to pump and feed her breastmilk through a bottle. We just want to be home and if it's easier for her to pick up feeding through a bottle than we can go home sooner so it's worth it to me!
We will press forth on the feeding battlefront and hopefully we will start to see some improvement with either source!
So the first trach change on Wednesday went well. ENT says that she looks like she is healing well and everything looked good. Next week it will be my turn! (The actual trach gets changed once a week, and the straps and bandages get changed twice a day for now, and once a day by the time we're home).
Yesterday I changed the strap and her bandages and did skin care for the first time, but I had the help of our trach nurse Jo Anne. Today though I'm on my own so I hope I remember all the right steps and instructions! I don't think it will take too long to get the routine down, but right now it seems very daunting!
I think I also forgot to mention that she had another eye exam a week or so ago and they said her retinas are finally mature and have grown the way they should. The best news of all is that they don't see any retinopothy, which is a very frequent problem with preemies. She is now good to go and won't need another eye exam for three months! Yea! One more thing out of the way!
And finally, to wrap things up for today I have to post the picture of Eden and grandpa. He has been a very frequent visitor but just held her yesterday for only the second time. So grandpa, even though she sleeps through almost all your visits, she does love you and appreciates you coming to see her. :o)
Tuesday, September 22, 2009
The silence is a good thing
I know, it's been three days since I updated the blog. I've had a couple people tell me they have been concerned that the silence meant something bad was going on. Well fortunately, in this case, the slience is definitely a good thing. I have been spending so much time holding Eden that I have hardly even so much as glanced at this darn computer.
She is now doing her "collar trials" (time on the trach collar, and off the ventilator) twice a day for three hours each time. It is awesome because that means the majority of the time that I'm there with her she is off the ventilator and very easy to hold and interact with.
The trials are going really well and the team of doctors are feeling very positive about her progress. We are hoping that it continues, but are also being very careful not to push her too hard too fast. It has definitely been a good few days so we are so grateful.
On the schedule for tomorrow: her first trach change! ENT will be there to do this first one and make sure that everything is healing correctly and to take out the sutures. I'm not sure I want to watch, but then again, I guess I better because I'll be doing it going forward. Yikes...
So on to the fun stuff - pictures!
This is what it looks like when she is on her trach collar - and also what it looks like when she wiggles out of the bottom of her blanket.
Daddy told her to look at the camera, but she was very focused on me. I couldn't help but post this picture even though it's not the best of me... I love to know she likes her mommy.
She also loves her daddy - he just plays with her so hard that she's just too tired to look at anything.
There are many things that Eden does that she gets from her daddy. One of the big ones - blinking right when I take a picture. I hope to teach her otherwise before too long because if I don't I have a feeling our family pictures will be very strange looking.
The last bit of good news for today is that the first opportunity to feed Eden is coming very soon. It may be tomorrow afternoon, or Thursday morning if the trach change happens too late in the day. We are hoping and praying that she catches on really quickly. I'll be sure to post details after that fun "first". She's just such a cutie and we love her to pieces.
She is now doing her "collar trials" (time on the trach collar, and off the ventilator) twice a day for three hours each time. It is awesome because that means the majority of the time that I'm there with her she is off the ventilator and very easy to hold and interact with.
The trials are going really well and the team of doctors are feeling very positive about her progress. We are hoping that it continues, but are also being very careful not to push her too hard too fast. It has definitely been a good few days so we are so grateful.
On the schedule for tomorrow: her first trach change! ENT will be there to do this first one and make sure that everything is healing correctly and to take out the sutures. I'm not sure I want to watch, but then again, I guess I better because I'll be doing it going forward. Yikes...
So on to the fun stuff - pictures!
This is what it looks like when she is on her trach collar - and also what it looks like when she wiggles out of the bottom of her blanket.
Daddy told her to look at the camera, but she was very focused on me. I couldn't help but post this picture even though it's not the best of me... I love to know she likes her mommy.
She also loves her daddy - he just plays with her so hard that she's just too tired to look at anything.
There are many things that Eden does that she gets from her daddy. One of the big ones - blinking right when I take a picture. I hope to teach her otherwise before too long because if I don't I have a feeling our family pictures will be very strange looking.
The last bit of good news for today is that the first opportunity to feed Eden is coming very soon. It may be tomorrow afternoon, or Thursday morning if the trach change happens too late in the day. We are hoping and praying that she catches on really quickly. I'll be sure to post details after that fun "first". She's just such a cutie and we love her to pieces.
Saturday, September 19, 2009
One Step Forward!
The process of weaning from the ventilator has begun! Today was the first time they turned off the vent and used only the humidified/oxygenated trach collar, and Eden passed with flying colors! They tested her CO2 levels before taking her off the vent and she was at 48. After the two hour trial her levels were at 41. She tolerated it really well and we are so happy for this big step.
The plan now is to go without the vent twice a day for two hours each time and see how she tolerates that. When she's on the vent the remainder of the time, she is just getting some small pressure support for each breath that she takes. Hopefully it will be no time before she doesn't need the ventilator at all. We will pray that the good news continues!
She continues to heal and recover so quickly. The last couple days she has hardly moved her head at all, but today she is a lot more comfortable moving her head back and forth. It is truly amazing how stong these little babies are. Their bodies adapt so quickly to everything that comes their way! What a miracle... it's a beautiful thing.
Today was also the NICU grad reunion party over at Lovelace. Every year they put on a big carnival type event for all the families who have had a baby in the unit there. Even though Eden wasn't able to go with us, we stopped by this morning and saw quite a few familiar faces. It was fun to get everyone caught up with Eden's progress because they were all so anxious to find out how she was doing. We are grateful for all the friends we made and for the care they gave Eden. We are really looking forward to having Eden there with us next year!
The plan now is to go without the vent twice a day for two hours each time and see how she tolerates that. When she's on the vent the remainder of the time, she is just getting some small pressure support for each breath that she takes. Hopefully it will be no time before she doesn't need the ventilator at all. We will pray that the good news continues!
She continues to heal and recover so quickly. The last couple days she has hardly moved her head at all, but today she is a lot more comfortable moving her head back and forth. It is truly amazing how stong these little babies are. Their bodies adapt so quickly to everything that comes their way! What a miracle... it's a beautiful thing.
Today was also the NICU grad reunion party over at Lovelace. Every year they put on a big carnival type event for all the families who have had a baby in the unit there. Even though Eden wasn't able to go with us, we stopped by this morning and saw quite a few familiar faces. It was fun to get everyone caught up with Eden's progress because they were all so anxious to find out how she was doing. We are grateful for all the friends we made and for the care they gave Eden. We are really looking forward to having Eden there with us next year!
Friday, September 18, 2009
She's recovering beautifully!
I am so grateful to say that Eden's recovery is going really well so far. They were able to wean her off the morphine yesterday afternoon so she was only getting tylenol every couple hours. Then throughout the night they were able to even stop the tylenol. She has been awake quite a bit today and seems comfortable and somewhat used to the idea of the trach. It still makes her really sad every time she has to get suctioned, but I'm hoping that soon enough she will be used to that and it will become a much easier process.
She was also able to begin her regular feedings again last night and she was very grateful for that! The poor baby was more than ready to have a full belly again. Everything in the feeding department looks like it's going great. Now the next step to is stop with that darn feeding tube and get her to eat like a real baby! :o) Once she has fully recovered from the procedure we will begin that process. We are definitely praying for that to go by quickly because as of right now it seems that's the only thing standing in our way of taking sweet Eden home! Things are definitely moving now and we feel like we're starting to see the light at the end of the tunnel!
She has taken to the pacifier pretty well most the time. We are hopeful that this is a good sign that she doesn't have oral aversion from having the vent tube in her mouth for so long.
She really enjoyed learning all about Winnie the Poohs adventures with dad. So precious...
I just can't get enough of that cute face. I just stare at her all day long and am so grateful that I can FINALLY see what she really looks like!
She only has the small feeding tube on her face now - what a relief!
I also just have to say thanks for all the calls and messages we've received in the last couple days. Forgive me for not answering or returning calls right now, but please just know that we appreciate all the love, support, and prayers for our family!
She was also able to begin her regular feedings again last night and she was very grateful for that! The poor baby was more than ready to have a full belly again. Everything in the feeding department looks like it's going great. Now the next step to is stop with that darn feeding tube and get her to eat like a real baby! :o) Once she has fully recovered from the procedure we will begin that process. We are definitely praying for that to go by quickly because as of right now it seems that's the only thing standing in our way of taking sweet Eden home! Things are definitely moving now and we feel like we're starting to see the light at the end of the tunnel!
She has taken to the pacifier pretty well most the time. We are hopeful that this is a good sign that she doesn't have oral aversion from having the vent tube in her mouth for so long.
She really enjoyed learning all about Winnie the Poohs adventures with dad. So precious...
I just can't get enough of that cute face. I just stare at her all day long and am so grateful that I can FINALLY see what she really looks like!
She only has the small feeding tube on her face now - what a relief!
I also just have to say thanks for all the calls and messages we've received in the last couple days. Forgive me for not answering or returning calls right now, but please just know that we appreciate all the love, support, and prayers for our family!
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