Thursday, March 22, 2007
Thursday 3-22-07
Grace was transferred to the step-down unit on Tuesday afternoon. It took a little while for us to get use to our new environment. Are new nurses are great but after being with the other ones for so long I think Grace and I are both experiencing a bit of separation anxiety. We are in a "bay" with two other patients and we are use to being in our own room so it has been hard getting use to it. The other two kids in there are much older, they both like to watch TV at the same time and they both have to turn up the volume to be able to hear there movie over the other one. I had the worst headache yesterday and Gracie has not been sleeping as well over there either. She will eventually be coming home to her three older siblings so I suppose she should get use to a loud environment with chaos. Another change we are getting use to is that they now want Dave and I to handle most of her care. I had to give her and injection in her leg last night, It didn't go so well and the nurse had to do it over :( I think i cried more than Gracie. She is almost completely off of the oxygen and tolerating her feeds well so if all goes well we should get to come home when she finishes her antibiotics. I have heard this could be April 6, 9, or 12 so we will just have to wait and see. Now it looks like we may skip going to Kaiser and stay here until we go home. I am learning it just depends on who you talk to, so we will just have to wait and see.
Monday, March 19, 2007
10 WEEKS OLD
Not much new information to report. Gracie has been doing great off of the ventilator. The doctors seem confidant that she won't go back on. The only thing keeping her in the hospital now are feeding issues and antibiotics which she receives through a IV (she needs to be on the antibiotics for a month to treat the staff infection, which she started on March 9). There has been some talk about transferring her to Kaiser but I was told this morning that the transfer definitely will not happen this week. This is fine with me, I would rather just keep her here until she can come home.
Her feeds are going really good. She was back up to her full feeds (19cc's per hour continuous) by Friday. Today they moved on to the next step in her feeding. They stopped the continuous feeds and went to boluses feeds which is to give her one ounce every 3 hours. I believe that her goal is to get 3 ounces every three hours.
The occupational therapist came around this morning to assess Gracie to see if she will be able to tolerate feeding from the bottle or breast. She thinks it looks good; so Gracie will be giving the bottle a try on Wednesday. She also taught me some exercises for Gracie to do in order to help stretch out her legs and one for her hands to help her thumbs loosen up. Her right hand looks good but the left one is a little tight. When she makes a fist her thumb wants to go inside and they want it to go outside. I'm told that it is common condition for preemies.
Dave and I are doing good. The kids are on Spring break. They will be spending part of the time at my mom's house, part of the time at Dave's sisters house and part of the time with us. They are really handling this situation very well, we are so proud of them. However, they are getting very anxious to have all of us home. We have weekly meetings with Gracie's "team" and last week the kids were with us. The doctor asked them if they had any questions and they replied "when can we take her home?" Of course the doctors couldn't give them an answer. (I feel it is a few weeks away which is better then months like we originally thought)
As always thank you for all of your prayers and keep them coming.
Much Love,
Jackie
Her feeds are going really good. She was back up to her full feeds (19cc's per hour continuous) by Friday. Today they moved on to the next step in her feeding. They stopped the continuous feeds and went to boluses feeds which is to give her one ounce every 3 hours. I believe that her goal is to get 3 ounces every three hours.
The occupational therapist came around this morning to assess Gracie to see if she will be able to tolerate feeding from the bottle or breast. She thinks it looks good; so Gracie will be giving the bottle a try on Wednesday. She also taught me some exercises for Gracie to do in order to help stretch out her legs and one for her hands to help her thumbs loosen up. Her right hand looks good but the left one is a little tight. When she makes a fist her thumb wants to go inside and they want it to go outside. I'm told that it is common condition for preemies.
Dave and I are doing good. The kids are on Spring break. They will be spending part of the time at my mom's house, part of the time at Dave's sisters house and part of the time with us. They are really handling this situation very well, we are so proud of them. However, they are getting very anxious to have all of us home. We have weekly meetings with Gracie's "team" and last week the kids were with us. The doctor asked them if they had any questions and they replied "when can we take her home?" Of course the doctors couldn't give them an answer. (I feel it is a few weeks away which is better then months like we originally thought)
As always thank you for all of your prayers and keep them coming.
Much Love,
Jackie
Tuesday, March 13, 2007
9 WEEKS OLD
Hi All,
Gracie was extubated on Monday! We were warned that she may not tolerate it very well and that she may have to be re-intubated right away. She seemed to tolerate it fine and was even taken off of the Hiflow and put onto regular O2. I was able to hear her cry, although her voice is very, very soft I could hear it. I was also able to hold her again, I think I held her a total of 3 times yesterday :) When I arrived this morning Gracie was back on the Hiflow (hi pressure oxygen through a cannula) it's a tiny step back but at least she is not being intubated again. As a matter of fact, they have taken all of the ventilator equipment out of her room. Once she proves that she can be off of the ventilator for good the only things keeping us here would be feeding issues and her antibiotics, which are to treat the staff infection and they are through a iv and she needs to be on them for about 3 more weeks. When that is the case she will be moved to Kaiser Walnut Creek. I heard a rumor that this could happen by the end of this week!
I have some photos to post and the hospital's computer guy is looking for the cord so we can upload them from my camera. Hopefully later today.
Love and Hugs to all,
Jackie
Gracie was extubated on Monday! We were warned that she may not tolerate it very well and that she may have to be re-intubated right away. She seemed to tolerate it fine and was even taken off of the Hiflow and put onto regular O2. I was able to hear her cry, although her voice is very, very soft I could hear it. I was also able to hold her again, I think I held her a total of 3 times yesterday :) When I arrived this morning Gracie was back on the Hiflow (hi pressure oxygen through a cannula) it's a tiny step back but at least she is not being intubated again. As a matter of fact, they have taken all of the ventilator equipment out of her room. Once she proves that she can be off of the ventilator for good the only things keeping us here would be feeding issues and her antibiotics, which are to treat the staff infection and they are through a iv and she needs to be on them for about 3 more weeks. When that is the case she will be moved to Kaiser Walnut Creek. I heard a rumor that this could happen by the end of this week!
I have some photos to post and the hospital's computer guy is looking for the cord so we can upload them from my camera. Hopefully later today.
Love and Hugs to all,
Jackie
Thursday, March 8, 2007
TWO STEPS FORWARD, TWO STEPS BACK...
Well Gracie had a great weekend and by Sunday she was down to a pressure setting of 14 and a rate of 20 on her ventilator.
On Monday her blood gas results returned to the not so great; and on Tuesday her temperature was up to nearly 104. They determined that she has an infection, most likely from her ventilator and they are treating it as pnemonia. Surprisingly they did not make many changes to her ventilator settings, they left the pressure alone and came up on her rate to 30, then brought it back down once her fever broke. Wednesday she looked very swollen and was very sleepy all day. She just didn't look as good as she had been looking the last week or so.
Today we found out that she has a full-blown staph infection. They are using some pretty heavy anti-biotics to fight it. Their concern is that it not get to her heart or pacemaker. Our hope is that the medications she is on will get rid of it before the infection gets worse.
Her vent settings are back up to 40... and any hope that she would be entubated this next week are gone. They have added a couple of weeks to her timeline in order to fight this infection, and then start over with the weening of the ventilator.
On Monday her blood gas results returned to the not so great; and on Tuesday her temperature was up to nearly 104. They determined that she has an infection, most likely from her ventilator and they are treating it as pnemonia. Surprisingly they did not make many changes to her ventilator settings, they left the pressure alone and came up on her rate to 30, then brought it back down once her fever broke. Wednesday she looked very swollen and was very sleepy all day. She just didn't look as good as she had been looking the last week or so.
Today we found out that she has a full-blown staph infection. They are using some pretty heavy anti-biotics to fight it. Their concern is that it not get to her heart or pacemaker. Our hope is that the medications she is on will get rid of it before the infection gets worse.
Her vent settings are back up to 40... and any hope that she would be entubated this next week are gone. They have added a couple of weeks to her timeline in order to fight this infection, and then start over with the weening of the ventilator.
Saturday, March 3, 2007
Countdown
We had our weekly meeting with Dr. Adatia, he is in charge of the PCICU, and he told us that everything about Grace is going great right now. He also told us that they will be trying to take Grace off of the ventilator sooner rather than later...
Now, he is the one who told us last week to expect a rough couple of weeks!
... we looked at each other with mild shock, and he clarified. He wants to take her pressure setting from 16 down to 8 - one point per day - and after that reduce the breath per minute rate to ten (or so) over the next few days. So, the sooner he was talking about is actually about ten days away!
And then, after we relaxed, Dr. Adatia let us know that most babies do not just get off the ventilator easily after being on for as long as Grace has been. He said that we should expect it to be an off and on trial for some time to come... but, I think we'll let Grace have the final word on this.
She continues to look better everyday. The scars from her first surgery are almost all just pink lines now. They are getting smoother all the time... sometimes we go to lunch and when we get back it seems like she has progressed a day.
Jackie got to hold her for the second time yesterday afternoon! With big brother Adam sitting right beside them.
She has an IV line, a feeding tube, and a ventilator and that is all! Most of the tubing and wires and stacked up medications are gone now and she is moving more and more. She got to sleep on her tummy for a big chunk of yesterday.
On Monday her nurse said that they will bump her up to a crib... progress in accomodations.
We have more pictures and will post them soon. Thanks again to everyone out there with a prayer for Grace.
Now, he is the one who told us last week to expect a rough couple of weeks!
... we looked at each other with mild shock, and he clarified. He wants to take her pressure setting from 16 down to 8 - one point per day - and after that reduce the breath per minute rate to ten (or so) over the next few days. So, the sooner he was talking about is actually about ten days away!
And then, after we relaxed, Dr. Adatia let us know that most babies do not just get off the ventilator easily after being on for as long as Grace has been. He said that we should expect it to be an off and on trial for some time to come... but, I think we'll let Grace have the final word on this.
She continues to look better everyday. The scars from her first surgery are almost all just pink lines now. They are getting smoother all the time... sometimes we go to lunch and when we get back it seems like she has progressed a day.
Jackie got to hold her for the second time yesterday afternoon! With big brother Adam sitting right beside them.
She has an IV line, a feeding tube, and a ventilator and that is all! Most of the tubing and wires and stacked up medications are gone now and she is moving more and more. She got to sleep on her tummy for a big chunk of yesterday.
On Monday her nurse said that they will bump her up to a crib... progress in accomodations.
We have more pictures and will post them soon. Thanks again to everyone out there with a prayer for Grace.
Friday, March 2, 2007
It all happened in a week...
The doctors had told us to expect a rough couple of weeks... she is amazing Grace... Her pacemaker wound is healing nice, the medications she was given dissolved the blood clots and helped set her heart beat back to normal! It all happened in a week...
In addition, she got to lay on her stomach for the first time and loved it.
They have found that lowering her beats per minute is making her a much happier baby.
The next big hurdle is the ventilator. She is down to 23 bpm and a pressure of 16. When she came out of surgery she was at nearly 100% support. They are lowering the support ever so slowly, the last two times they tried to lower she fought it. So now I suppose we have to trick her with the ultra slow changes and hope that she tolerates it...
More later... we keep praying for a long, long string of good days like this...
In addition, she got to lay on her stomach for the first time and loved it.
They have found that lowering her beats per minute is making her a much happier baby.
The next big hurdle is the ventilator. She is down to 23 bpm and a pressure of 16. When she came out of surgery she was at nearly 100% support. They are lowering the support ever so slowly, the last two times they tried to lower she fought it. So now I suppose we have to trick her with the ultra slow changes and hope that she tolerates it...
More later... we keep praying for a long, long string of good days like this...
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