We won't be going home today, nothing major is going on its just that Grace has had too really sleepless and fussy nights. The doctors don't know what is causing her to be so fussy, it could either be a terrible bout of colic or withdrawal, or a combination of the two. But they want to get a better feel for what is going on with her and see if they can help it any before they send us home with an inconsolable baby.
Right now she is finally asleep in her swing--though she has woken up several times she has fallen back asleep---this is the most rest she has had at one time in two days (1 1/2 hours). Last night the nurse and tech her so kind they took Grace out of the room at midnight and walked the halls with her so I could get some sleep since I hadn't slept the night before. I was so grateful, I woke up at 6am to Grace screaming in the hall (she has a good set of lungs) and then resumed the walking the halls with her.
We finally tried a dose of morphine, she had her normal response--slept for 20 minutes and then woke up calm. But an hour later the inconsolable crying began. It is so hard because normally she calms easy and is content if in your arms, but not these last few days. So the plan today is to stop the gavage feedings and feed her via the pump over 1 1/2. Hopefully this will help or at least give the doctors a better understanding as to what is going on with her.
I'm hoping to go home tomorrow, I'm tempted to just tell them that we will take our colicky baby home and deal with the hardship that brings to just have her home finally. We have been in the hospital for a total of 86 days, 80 of which spent in the PICU--its time to go home. My goal is to spend more time at home than we did in the hospital before its time to have her second open heart surgery.
PS--if any of you have had colicky babies, I would love to hear what worked for you to help them get some sleep.
Tuesday, September 30, 2008
Sunday, September 28, 2008
The Plan
Grace is still doing well though last night and today she has been extremely cranky and fussy. We have been weaning her methadone and though they have only cut the dose a little bit it is still very noticeable by Grace.
In addition to this we have worked our way up to feeds every 3 hours, which means she is getting 69cc (that's a little more than two ounces) an hour. The doctors wanted to do gravage feeds, which is basically not putting the syringe on a pump and letting gravity work so she can get the feeling of filling her stomach gradually, but before they do this I think she needs to work up to it so that is what we are doing. Once Gracie seems to tolerate getting the 69cc in a half an hour on the pump then we will try the gravage feeding. She doesn't throw up much just about 5-10cc but whenever her stomach is full she starts coughing and chocking retching---it is actually quite scary to watch.
So I think we are still aiming to go home either Tuesday or Wednesday--there is a small chance we could go home on Monday but I hope not, I'm just not ready. To be perfectly honest I'm scared to death to go home. It's not that I don't feel confident in providing her care, like giving meds, her shots, etc. (though I haven't learned how to put in the feeding tube yet), it's more that I'm afraid of what could happen. We have made it so far and yes she is stable and doing great, but forever our lives will always rest upon how long Gracie's heart will last. All we can do is trust in God and know that He is in charge and hope and pray that she will live a long life, full of joy and happiness.
In addition to this we have worked our way up to feeds every 3 hours, which means she is getting 69cc (that's a little more than two ounces) an hour. The doctors wanted to do gravage feeds, which is basically not putting the syringe on a pump and letting gravity work so she can get the feeling of filling her stomach gradually, but before they do this I think she needs to work up to it so that is what we are doing. Once Gracie seems to tolerate getting the 69cc in a half an hour on the pump then we will try the gravage feeding. She doesn't throw up much just about 5-10cc but whenever her stomach is full she starts coughing and chocking retching---it is actually quite scary to watch.
So I think we are still aiming to go home either Tuesday or Wednesday--there is a small chance we could go home on Monday but I hope not, I'm just not ready. To be perfectly honest I'm scared to death to go home. It's not that I don't feel confident in providing her care, like giving meds, her shots, etc. (though I haven't learned how to put in the feeding tube yet), it's more that I'm afraid of what could happen. We have made it so far and yes she is stable and doing great, but forever our lives will always rest upon how long Gracie's heart will last. All we can do is trust in God and know that He is in charge and hope and pray that she will live a long life, full of joy and happiness.
Saturday, September 27, 2008
sisters
Morgan came up again on Friday and spent the day with us in the hospital room--no wagon trips around the floor today, but I did let Morgan get into Gracie's crib to "help" me change Grace's diaper. So I had to take some pictures of the girls together; I've waited a long time to have them be in the same room and begin bonding.
car seat
One of the things that Gracie needs to do before we can go home is a car seat trial--she has to be able to sit in her car seat for the duration of the drive home (1 hour and 15 minutes) without dropping her sats. She did really well at the onset, she seemed to like the new perspective and even enjoyed being closer to her mobile, so how could I resist taking pictures.
But after about 15 minutes she let me know she had enough and no amount of rocking, patting, or rubbing was going to change that. I had no other choice but to take her out, hopefully she'll do better the next time we try.
wagon
Thursday Morgan came up to see Gracie in her new room and just absolutely loved it. She went to the playroom and painted, she rode in the elevator a couple of times and even went for a wagon ride with Gracie.
Gracie's nurse helped load Grace and her feeding pump and a portable monitor into a wagon, Jason pushed the oxygen and off we went around the unit. Grace slept through the whole walk but Morgan loved it!
Thursday, September 25, 2008
Yummy
Today has been a really good day for Grace. She rested extremely well, in fact she has only been awake for maybe two hours all day. I hope that doesn't mean she'll be awake all night.
Gracie's big accomplishment today was drinking from a bottle!! At 11:30am the speech therapist came to work with us on how to feed her, but Grace didn't want anything to do with the bottle. So we left her alone and planned on trying it again later; but before we tried, we turned her feeds off for an hour to hopefully make her hungry and then the gave her a flavored formula. Its the same formula she has been on--ellacare, just vanilla flavored, it smells like cake batter. Though it was some work for both Gracie and I she drank 16cc!! What an accomplishment!!! As she finally latched on and drank I was so happy tears filled my eyes, 12 1/2 weeks after birth and she is finally experiencing eating for the first time. Every day she does more and more baby things instead of spending all her energy on healing and growing.
Eating is really hard for all heart babies--it takes so much energy and coordination, so the plan is to have Grace on every two hour feeds. So she'll get 46cc every two hours over the course of an hour tonight. Then in the morning we will give her a bottle again and she will have the opportunity to drink as much of the 46cc she can in 10-15 minutes (depending on how tired she seems) and whatever she doesn't finish goes through her feeding tube. Then the next two feeding she'll just be fed through her tube and then we'll try the bottle again. We're just hoping that her belly can handle having so much volume at once.
Other milestones for today--Grace wore her first dress today and looked absolutely adorable. Its a dress Jason picked out and bought and all Grace's were impressed with how well he did on the purchase :) Morgan also came to visit and loved seeing Gracie, she even got to go for a ride with her in the wagon. We loaded Gracie in with a portable monitor and walked around the unit--though Grace was asleep she liked it because whenever we stopped she would start to cry. What can I say the girl knows what she likes and knows how to get others to accommodate her.
Gracie's big accomplishment today was drinking from a bottle!! At 11:30am the speech therapist came to work with us on how to feed her, but Grace didn't want anything to do with the bottle. So we left her alone and planned on trying it again later; but before we tried, we turned her feeds off for an hour to hopefully make her hungry and then the gave her a flavored formula. Its the same formula she has been on--ellacare, just vanilla flavored, it smells like cake batter. Though it was some work for both Gracie and I she drank 16cc!! What an accomplishment!!! As she finally latched on and drank I was so happy tears filled my eyes, 12 1/2 weeks after birth and she is finally experiencing eating for the first time. Every day she does more and more baby things instead of spending all her energy on healing and growing.
Eating is really hard for all heart babies--it takes so much energy and coordination, so the plan is to have Grace on every two hour feeds. So she'll get 46cc every two hours over the course of an hour tonight. Then in the morning we will give her a bottle again and she will have the opportunity to drink as much of the 46cc she can in 10-15 minutes (depending on how tired she seems) and whatever she doesn't finish goes through her feeding tube. Then the next two feeding she'll just be fed through her tube and then we'll try the bottle again. We're just hoping that her belly can handle having so much volume at once.
Other milestones for today--Grace wore her first dress today and looked absolutely adorable. Its a dress Jason picked out and bought and all Grace's were impressed with how well he did on the purchase :) Morgan also came to visit and loved seeing Gracie, she even got to go for a ride with her in the wagon. We loaded Gracie in with a portable monitor and walked around the unit--though Grace was asleep she liked it because whenever we stopped she would start to cry. What can I say the girl knows what she likes and knows how to get others to accommodate her.
Wednesday, September 24, 2008
We're here!!!
We were discharged from the PICU at 11am this morning! I can hardly believe that we actually were able to leave the PICU. Gracie is doing great. She seems to be enjoying the quietness of having our own room again and I am enjoying being with her all the time and taking care of her. But I must admit that it is hard not to have a nurse with her 24/7---really unless needed the nurse only comes in to do vitals---every four hours. So needless to say I feel the need to stay with her every night--I'm afraid she'd be left alone crying for too long and she'll of worked herself up too much.
Gracie has some major goals:
1. she needs to gradually be weaned off the adavan and methadone (this will be a long process)
2. We need to see if she can come off of continuous feeds and do bolice feeds. Currently she is getting 23cc an hour, so they want her to be able to tolerate 46cc every two hours and then watch her for a day or two and then see if Grace can handle 69cc every three hours. All along we will be trying to get her to learn how to drink from a bottle. This is the goal that is going to determine when she comes home---if things go the way that is hoped by the doctors Gracie could be home in a week.
3. I need to learn how to care for her and how to manage her meds. She needs to do a car seat test
I know she will be able to accomplish these goals its just a matter of when she does it---everything is on Gracie time---I'm hoping that her time frame has sped up. But in the mean time I am enjoying watching her sleep, caring for her, and just being with her.
Gracie has some major goals:
1. she needs to gradually be weaned off the adavan and methadone (this will be a long process)
2. We need to see if she can come off of continuous feeds and do bolice feeds. Currently she is getting 23cc an hour, so they want her to be able to tolerate 46cc every two hours and then watch her for a day or two and then see if Grace can handle 69cc every three hours. All along we will be trying to get her to learn how to drink from a bottle. This is the goal that is going to determine when she comes home---if things go the way that is hoped by the doctors Gracie could be home in a week.
3. I need to learn how to care for her and how to manage her meds. She needs to do a car seat test
I know she will be able to accomplish these goals its just a matter of when she does it---everything is on Gracie time---I'm hoping that her time frame has sped up. But in the mean time I am enjoying watching her sleep, caring for her, and just being with her.
Tuesday, September 23, 2008
Moving on up...
Sorry I can't help but post pictures of Gracie, she's so cute and as a reader of other's blogs I enjoy it better if their are pictures!! Hope you don't get tired of seeing this cute little face.
So provided Gracie does well tonight we will be moving to the third floor tomorrow--just writing those words brings tears to my eyes. For so long our goal was just to keep her alive from day to day that moving her to the floor wasn't even a consideration. Now our sweet little fighter is doing so well we are even talking about bringing her home next week if things go well. Miracles really do happen and Gracie is living proof--really how could anyone survive what she has gone through if it wasn't for a loving Father in Heaven who strengthened and cradled Gracie during those rough times.
Many people told us that most heart babies don't like to be held or touched because of their experiences but Gracie absolutely loves to be held and cuddled. In fact she demands it, all of her nurses can will tell you that they have had to hold Gracie just to keep her calm and relaxed (not that any of them complained). Anyways I wonder if she loves being held so much because even once she was born, Heavenly Father wrapped his arms around my sweet baby to nurture her through her 10 major procedures and all of her many complications. What an amazing image!!
Thank you all for your help, support, love and prayers. For those of you who have helped with Morgan--thank you--I don't know what I would have done if I didn't have wonderful friends and family to care for her so I didn't have to worry so much about her and who cared for her.
Sunday, September 21, 2008
Holding Steady
Today was a quiet and good day for little Gracie. She seems to be tolerating having the milirone off and the "big" change today was lowering her high flow from 4 liters to 3 liters. I spoke to the doctor today, he said that she could go up to the third floor as early as Tuesday!!! Can you believe that after 12 weeks we may finally get out of the PICU? I'm very nervous but excited. Oh how I hope that Gracie does well and continues to progress.
We gave Gracie a nice sponge bath and she absolutely loved it, she didn't even cry once I noticed today that her hair has gotten more red in the back--who would have thought she'd have red hair? I guess that is expected considering her fiestiness and temper.
Saturday, September 20, 2008
Still doing good
Gracie is doing well. Her milirone was turned off completely today and the doctors are just watching to see how she will tolerate it. One of the Attendings told me today that it will take a day or two before we really can see if she tolerates it well. Turning her milirone down and off is the only thing that has the doctors have done--they want to take it extremely slow just to be safe and because Gracie has proven to be finicky when more than one thing is done at a time.
The next step is to try and turn the high flow down--optimistically speaking if she tolerates everything well enough, Gracie could move up to the third floor by Thursday at the earliest. Though the thought of being on the floor scares me to death, we are hoping and praying that she will get there soon.
We brought Gracie's swing to the hospital today and she loved it! Hopefully it will help soothe her because right now she demands to be held continuously--the nurses today had to take turns holding her and bouncing her just to keep her calm!!
The next step is to try and turn the high flow down--optimistically speaking if she tolerates everything well enough, Gracie could move up to the third floor by Thursday at the earliest. Though the thought of being on the floor scares me to death, we are hoping and praying that she will get there soon.
We brought Gracie's swing to the hospital today and she loved it! Hopefully it will help soothe her because right now she demands to be held continuously--the nurses today had to take turns holding her and bouncing her just to keep her calm!!
Thursday, September 18, 2008
Everyone's smiling
Today was a very good day! Gracie did great all day long and was extibated this afternoon and did wonderful. She was still mad like she has been the previous times she had her breathing tube removed, but this time I think it was because they put her back on high flow at 6 liters (higher than she has ever been on before, I think). But after her gas came back with some great numbers she was taken down to 4 and almost fell asleep instantly.
I held her about an hour after she was extibated and she loved it. I even was able to hold her up chest to chest--I wasn't sure how she would like it, but she fell right asleep and slept in that position for about 40 minutes. Gracie then woke up and was content just looking around and eventually giving me her first social smile--talk about melting my heart. I walked out of the hospital on cloud nine--she is smiling and feeling good, what more can I ask for aside from having her home?
The doctors think she just might make it to the floor this time and even said as early as a week away!! Of course it all depends on little Miss Grace, sometimes I think she loves the PICU so much that when we mention sending her to the floor she finds ways to stay. She just has to get home and then she'll see how wonderful it is, even if it means leaving all of her favorite nurses and doctors; she'll see them all again soon enough.
I'm posting a little video we took of Gracie tonight--she is working up to smiling and we would have gotten it on film but our memory card was full so it cut us off. We hope you enjoy seeing our little beauty.
I held her about an hour after she was extibated and she loved it. I even was able to hold her up chest to chest--I wasn't sure how she would like it, but she fell right asleep and slept in that position for about 40 minutes. Gracie then woke up and was content just looking around and eventually giving me her first social smile--talk about melting my heart. I walked out of the hospital on cloud nine--she is smiling and feeling good, what more can I ask for aside from having her home?
The doctors think she just might make it to the floor this time and even said as early as a week away!! Of course it all depends on little Miss Grace, sometimes I think she loves the PICU so much that when we mention sending her to the floor she finds ways to stay. She just has to get home and then she'll see how wonderful it is, even if it means leaving all of her favorite nurses and doctors; she'll see them all again soon enough.
I'm posting a little video we took of Gracie tonight--she is working up to smiling and we would have gotten it on film but our memory card was full so it cut us off. We hope you enjoy seeing our little beauty.
Wednesday, September 17, 2008
A Success...
Let me apologize before hand if this post is somewhat incoherent; I've been up since 4am and just got home from checking cleaning in freshman apartments. I just wanted to post tonight because I know there are many wanting to know how she is doing.
Gracie's heart cath was really successful and she is recovering comfortably. Apparently Gracie just wants to be a pioneer in her recovery first being suspended for several days and now having to have had two stints placed at either end of her sano--something that they say they have never done. At one end a muscle was compressing the sano and at the other end there seemed to be a kink.
The doctors are optimistic that this will help her so much, we can already see an improvement. Gracie's sats have stayed stable in the high 70s and 80s. They have weaned her on her vent and feel she is ready to be extibated, but promised to wait till tomorrow afternoon when Jason and I can be there. We are hoping that this procedure was exactly what Grace needed to get her over the hump and excel now.
I also spoke to the doctor about her heart arrhythmia and they are thinking that the stints are going to help with that so they aren't going to start her on any meds to treat it for now. I'm a little concerned but I trust that the doctors know what they are talking about. We have been in the PICU for so long that I know that many of her care givers love Gracie and want her to excel as much as we do. Since she has been reintubated everyone who walks by stops and asks what happened because it is such a shock to see her reintubated. How wonderful it is to know that she is cared for by so many nurses and staff in the PICU--it makes leaving her there a little bit easier.
Thank you again for all your thoughts, prayers and support.
Gracie's heart cath was really successful and she is recovering comfortably. Apparently Gracie just wants to be a pioneer in her recovery first being suspended for several days and now having to have had two stints placed at either end of her sano--something that they say they have never done. At one end a muscle was compressing the sano and at the other end there seemed to be a kink.
The doctors are optimistic that this will help her so much, we can already see an improvement. Gracie's sats have stayed stable in the high 70s and 80s. They have weaned her on her vent and feel she is ready to be extibated, but promised to wait till tomorrow afternoon when Jason and I can be there. We are hoping that this procedure was exactly what Grace needed to get her over the hump and excel now.
I also spoke to the doctor about her heart arrhythmia and they are thinking that the stints are going to help with that so they aren't going to start her on any meds to treat it for now. I'm a little concerned but I trust that the doctors know what they are talking about. We have been in the PICU for so long that I know that many of her care givers love Gracie and want her to excel as much as we do. Since she has been reintubated everyone who walks by stops and asks what happened because it is such a shock to see her reintubated. How wonderful it is to know that she is cared for by so many nurses and staff in the PICU--it makes leaving her there a little bit easier.
Thank you again for all your thoughts, prayers and support.
Tuesday, September 16, 2008
Heart Cath
Gracie will go in for her 10th major procedure tomorrow morning at 7:30am. Most likely they will stint open her sano and hopefully this will help with her oxygenation levels and everything else.
The doctors are optimistic that this is what Grace needs--they were actually thinking it was time to send her to the cath lab anyways, even before all of this happened. The Attending--Doctor Whitty--also thinks that we should be able to extubate by friday. She feels that Gracie doesn't even need to be intubated, it was more of a precaution and she would need to be intubated anyways.
After studying Grace's heart rhythms from the last two months, the doctors believe that she has a heart arrhythmia--kind of hard to detect since the waves aren't much different from regular heart waves. We're hoping that meds will be able to fix it, in fact one of the meds that they use to treat the heart arrhythmia can also be an after load reducer--which is what the enalapril was intended for.
I'll post tomorrow after the cath lab.
The doctors are optimistic that this is what Grace needs--they were actually thinking it was time to send her to the cath lab anyways, even before all of this happened. The Attending--Doctor Whitty--also thinks that we should be able to extubate by friday. She feels that Gracie doesn't even need to be intubated, it was more of a precaution and she would need to be intubated anyways.
After studying Grace's heart rhythms from the last two months, the doctors believe that she has a heart arrhythmia--kind of hard to detect since the waves aren't much different from regular heart waves. We're hoping that meds will be able to fix it, in fact one of the meds that they use to treat the heart arrhythmia can also be an after load reducer--which is what the enalapril was intended for.
I'll post tomorrow after the cath lab.
Monday, September 15, 2008
Mother's intuition
Last night as we were getting ready for bed I felt really uneasy about where Gracie was--so uneasy I was literally scared to death for her. Before I layed down I called the hospital and found all to be well--she was resting comfortably, the only change was that her high flow was increased from 4 liters to 5 liters. I felt comforted and went to sleep only to have Morgan join us in bed at 1am because of her teeth and her way of dealing with all that is going on. About 2 hours later, we couldn't handle Morgan being in bed with us so we took her back to her bed--needless to say that when my alarm went off at 4:30am to pump and call the hospital I ignored it and the next thing I knew we were getting a phone call from the hospital.
We were told that Gracie wasn't doing too well, her blood pressure and heart rate were extremely high and no one knew why. Apparently after the nurse did her morning assessments, she went to the next bed to assess the other little girl she was caring for and within a minute Grace's alarms were going off--her blood pressure sky rocketed along with her heart rate and the weird thing was that she was sound asleep. So they gave her some fluids and eventually she relaxed and the numbers came down. But a few minutes later, as the attending was sitting watching her, Grace's heart rate went from the 170s to the 210s within 15 seconds and she was still asleep. She started having irregular breathing and they decided to reintubate her to be safe. It took quite some time to calm her down and a lot of sedatives but she seems to be stable now.
The doctors are puzzled--they have no idea what caused the episodes or what to do. They did an echo, all looks fine. They did an ultrasound of her head--and that is normal. So the next step is probably to go back to the catherization lab and possibly stint open her conduit (what was placed in her heart in her first surgery). Hopefully by doing this they will be able to help whatever narrowing may be affecting the squeeze of her heart that is effecting her blood pressure.
We are so grateful for great doctors and nurses that know what they are doing and that are willing to keep us involved in Grace's care. The fellow on, told us that he wouldn't necessarily consider this episode a step backward--if anything it has given us additional information about Gracie. Something needs to be done because her heart can't handle working on its one when she is extubated without some help. Basically he feels that Grace plateaued in her progress and we just need to get over that hump. I kind of think of it like this: some heart babies have a really fast recovery, where everything goes according to plan. Others, however, their road is more curved and whindy, in that it may seem that they are just going in circles, but those circles are just part of that whindy road that eventually will bring them out of the woods. (Have I confused you all with my little analogy?)
Please continue to pray for our Gracie, she needs all the help she can get. She is so strong and I know she is a fighter and wants to survive--looking into her big, beautiful eyes I can see she isn't ready to give up yet. Thank you all for your love and support.
We were told that Gracie wasn't doing too well, her blood pressure and heart rate were extremely high and no one knew why. Apparently after the nurse did her morning assessments, she went to the next bed to assess the other little girl she was caring for and within a minute Grace's alarms were going off--her blood pressure sky rocketed along with her heart rate and the weird thing was that she was sound asleep. So they gave her some fluids and eventually she relaxed and the numbers came down. But a few minutes later, as the attending was sitting watching her, Grace's heart rate went from the 170s to the 210s within 15 seconds and she was still asleep. She started having irregular breathing and they decided to reintubate her to be safe. It took quite some time to calm her down and a lot of sedatives but she seems to be stable now.
The doctors are puzzled--they have no idea what caused the episodes or what to do. They did an echo, all looks fine. They did an ultrasound of her head--and that is normal. So the next step is probably to go back to the catherization lab and possibly stint open her conduit (what was placed in her heart in her first surgery). Hopefully by doing this they will be able to help whatever narrowing may be affecting the squeeze of her heart that is effecting her blood pressure.
We are so grateful for great doctors and nurses that know what they are doing and that are willing to keep us involved in Grace's care. The fellow on, told us that he wouldn't necessarily consider this episode a step backward--if anything it has given us additional information about Gracie. Something needs to be done because her heart can't handle working on its one when she is extubated without some help. Basically he feels that Grace plateaued in her progress and we just need to get over that hump. I kind of think of it like this: some heart babies have a really fast recovery, where everything goes according to plan. Others, however, their road is more curved and whindy, in that it may seem that they are just going in circles, but those circles are just part of that whindy road that eventually will bring them out of the woods. (Have I confused you all with my little analogy?)
Please continue to pray for our Gracie, she needs all the help she can get. She is so strong and I know she is a fighter and wants to survive--looking into her big, beautiful eyes I can see she isn't ready to give up yet. Thank you all for your love and support.
Saturday, September 13, 2008
Today...
Where do I start? As I mentioned earlier, today was a rough day for Gracie. Her heart rate has been high all day and even got into the "200 teens," she had a high fever and just seemed inconsolable unless she was in some one's arms being rocked and bounced. The cultures drawn a couple days ago showed that she had a urinary tract infection, so the doctors decided to send another culture to verify it--but started her on antibiotics anyway.
The cardiologist that did the echo last night thought that her leaking valve was leaking more than it was on Tuesday's echo--but he didn't know for sure; this is why her milirone was increased. The also increased her high flow to 5--she has never been on it that high (I think this is what added to her agitation, its like a wind storm in your nostrils). They also increased both her adavan and methadone because of her extreme agitation.
Despite all the changes nothing seemed to take away what has bugging her--she wasn't sleeping soundly and her heart rate was still higher than we would want it. Around 7:30pm, Gracie was still fussy and no matter what way I held her, bounced her, or rocked her nothing helped. I looked down and noticed that her feeding tube had grown...somehow it got pulled out and we suspected it was no longer in her intestines like it should be. The nurse turned off Grace's feeds and waited for the doctor to come by and within 15 minutes of her feeds being off and me patting her belly nonstop she was able to relax. Gracie was so relaxed that she just stared at me for 45 minutes straight--she was so close to smiling, it was as if she was teasing me. The corners of her mouth would turn up just a bit and then she would open her mouth or something...but I think her first social smile is coming.
Anyways the feeding tube was indeed pulled out, the nurse said it probably was in her esophagus. No wonder she was so upset--her tummy isn't use to having food in it, let alone 23cc an hour for who knows how long. Hopefully now she can rest easily and get the rest she needs.
Thank you for your thoughts and prayers.
The cardiologist that did the echo last night thought that her leaking valve was leaking more than it was on Tuesday's echo--but he didn't know for sure; this is why her milirone was increased. The also increased her high flow to 5--she has never been on it that high (I think this is what added to her agitation, its like a wind storm in your nostrils). They also increased both her adavan and methadone because of her extreme agitation.
Despite all the changes nothing seemed to take away what has bugging her--she wasn't sleeping soundly and her heart rate was still higher than we would want it. Around 7:30pm, Gracie was still fussy and no matter what way I held her, bounced her, or rocked her nothing helped. I looked down and noticed that her feeding tube had grown...somehow it got pulled out and we suspected it was no longer in her intestines like it should be. The nurse turned off Grace's feeds and waited for the doctor to come by and within 15 minutes of her feeds being off and me patting her belly nonstop she was able to relax. Gracie was so relaxed that she just stared at me for 45 minutes straight--she was so close to smiling, it was as if she was teasing me. The corners of her mouth would turn up just a bit and then she would open her mouth or something...but I think her first social smile is coming.
Anyways the feeding tube was indeed pulled out, the nurse said it probably was in her esophagus. No wonder she was so upset--her tummy isn't use to having food in it, let alone 23cc an hour for who knows how long. Hopefully now she can rest easily and get the rest she needs.
Thank you for your thoughts and prayers.
Two Steps back
When I called and spoke to the nurse early this morning I was told that the cardiologist had to come in and do an echo on Gracie--her heart rate was in the 180s and morphine didn't even seem to help. He didn't say much but increased her milirone to .50cc and put her back on high flow. I haven't been able to talk to the doctors yet so I don't know what he saw or what they are thinking. I'll update later once I know more.
Friday, September 12, 2008
We can see the light...
Last night we were talking to the doctor and he told us that Gracie is so close to leaving the PICU, that he can see the light at the end of the tunnel--she is so close and just needs to keep moving forward!!!
By yesterday afternoon Grace was off of the high flow oxygen and just on a regular cannula and the millirone was off completely. Unfortunately though, Gracie didn't seem to be tolerating it very well--her heart rate sat in the 180s and she began to develop a fever. They turned the millirone back on to .25cc an hour and ran a whole bunch of cultures to see if Grace developed an infection because of her surgery last Friday. Throughout the night her fever broke, but she never really slept (she has been quite cranky with a lot of gas) and her sats were in the 60s, so they thought they would have to put her back on high flow. It seemed that we were hitting a bump that we just couldn't get over; but Grace managed to stay off of high flow today!!
During rounds today the doctors think that taking her off of both high flow and millirone probably was just too much and that they would let Gracie just rest and begin weaning milirone possibly tomorrow. But this time they will go slower than just turning it off from the .25cc.
So while I was there I just held Gracie and she was exactly where she wanted to be, she just slept so soundly that I could actually stroke her head and she wouldn't even budge. I was so happy because she needed some good sleep. Wish us luck that Gracie will decide she is ok with being off the milirone because once she is we should be on the floor as early as Tuesday or Wednesday--its all up to her now!! Gracie can do it, she has come so far!!
By yesterday afternoon Grace was off of the high flow oxygen and just on a regular cannula and the millirone was off completely. Unfortunately though, Gracie didn't seem to be tolerating it very well--her heart rate sat in the 180s and she began to develop a fever. They turned the millirone back on to .25cc an hour and ran a whole bunch of cultures to see if Grace developed an infection because of her surgery last Friday. Throughout the night her fever broke, but she never really slept (she has been quite cranky with a lot of gas) and her sats were in the 60s, so they thought they would have to put her back on high flow. It seemed that we were hitting a bump that we just couldn't get over; but Grace managed to stay off of high flow today!!
During rounds today the doctors think that taking her off of both high flow and millirone probably was just too much and that they would let Gracie just rest and begin weaning milirone possibly tomorrow. But this time they will go slower than just turning it off from the .25cc.
So while I was there I just held Gracie and she was exactly where she wanted to be, she just slept so soundly that I could actually stroke her head and she wouldn't even budge. I was so happy because she needed some good sleep. Wish us luck that Gracie will decide she is ok with being off the milirone because once she is we should be on the floor as early as Tuesday or Wednesday--its all up to her now!! Gracie can do it, she has come so far!!
Wednesday, September 10, 2008
Grace's Song
A friend that I met up at the hospital gave me this website called Songs of Love--you fill out a questionaire about your child who is facing a life threatening illness (thanks Hollie) and we just got the song today. Jason and I love it and hope that Gracie will come to love it too. Hear it is for your listening pleasure.
http://www.box.net/shared/03s4skjron
http://www.box.net/shared/03s4skjron
Pictures of Gracie
As I held Gracie today I realized that the simple sponge baths Gracie had been getting wasn't doing the trick--she stunk!! So I gave her a good head to toe bath wetting her down as much as I can without imerging her completely in a bath. These pictures were taken after her bath--though she hated the bath, I think she felt good and was happy that she was clean. One of the pictures even has her smiling a bit. She is such a beauty!!
Miracle For Gracie's Neighbor
Today was a quiet day up at the hospital for Gracie which is a good thing because her sweet little neighbor needed the attention today. Daxton Cook who is only three months old has been waiting for a heart for the last two months and finally his family got the call this morning at 2:25am!!! The heart is in and beating and things seem to look good. Please keep Daxton and his family in your prayers--they have a long recovery ahead of them. It is amazing to me how one family's tragedy and heartache can be another family's miracle and blessing. I am struck in awe at how selfless and giving families are when they donate their loved ones'--especially their babies' and small children's--organs. Please pray for the donor family as well in their time of need and comfort.
Tuesday, September 9, 2008
Any suggestions?
I'm wondering if anyone knows of someone who would be available to watch Morgan regularly while Gracie is still in the hospital. We have had a lot of help from so many friends and family but Morgan being bounced back and forth between different and new people everyday is just too hard for her.
I'm looking for someone who I can trust implicitly with my little Morgan. Preferably we want someone who wouldn't mind watching her at our apartment, but we are flexible. I can have a schedule so the hours are some what stable and consistent and we are willing to pay.
Please, if you have any suggestions we would love to hear them. If you can't figure out how to post a comment you can always email me at deanna_gourley@byu.edu.
Gracie is doing well. Right now we are working on weaning her off of the millirone and high flow oxygen, once these things are done we will be moving on up to the third floor. I asked the doctor today when he was thinking we could be on the floor and he said by the end of this week or beginning of next week--depending on how Gracie tolerates all the weaning. I tell her everyday that she needs to get off the meds and high flow so that we could progress and go home--9 weeks is just too long to not be home yet!!
Sunday, September 7, 2008
Insanity
I'm sure many of you are familiar with Albert Einstein's quote about insanity "...doing the same thing over and over again and expecting different results," well all of Grace's doctors must be insane. :) As you all know she was started again on the analipril drug--she was given half of the normal dose, which is so small of a dose that nothing should have happened. Because it has a half life of 12 hours she was given another half of dose during the night shift, well it must of built up in her system because around 2am her sats started dropping steadily.
When I called around 5am this morning I was told that her blood pressure had begun to drop but they were giving her extra fluids to help it and they weren't concerned. We decided to go up to the hospital early and attend the Sacrament meeting there--as the Sacrament was being passed Jason's phone rang and it was the hospital, Grace's nurse was calling to tell us that we needed to get to the hospital immediately that her sats and blood pressure had dropped dramatically and they couldn't get them up. They had her on dopamine and ordered some blood--hoping that once Gracie got the extra blood she would be able to increase her pressure and sats.
When Jason and I got down to Grace's room her blood pressure had a means in the low 40s (we like the mean in the 60s) and her sats were in the low 50s (should be between 70 and 85). Her heart rate was in the 190s and climbing and she was sweating profusely. I asked to hold her, hoping that it would help her raise her sats and it did a pit but she was really uncomfortable. A couple hours later we put her back in her bed, gave her some morphine and she had received about half of the blood ordered---her sats were in between 70 and 75, blood pressure had a mean of 60s -70s and heart rate came down from as high as 210 to 175-180. It was some of the most scary hours we've had with Gracie in a while.
At one point the Attending came in and said that this child is never getting analipril again--its nice to see someone who finally broke the insanity cycle! Tomorrow I am hoping to be at the hospital for rounds so that I can hear for myself what they are planning on doing now that Grace has proven them that analipril is not for her.
When we left the hospital tonight Gracie no longer was a dusky bluish-purple color but a pinkish pale color (which is good for her). I really hope this is the last big bump in the road before Gracie comes home---please keep her in your prayers she is and always will be so fragile, all babies with heart problems are.
Here are some picutes of Gracie while Morgan visited today. Today is Grace's 2 month birthday so we decided to bring Morgan up to see her--though Grace wasn't doing well we thought we needed to let Morgan see her. It was kind of funny, normally she is so afraid of Grace and all her tubes and wires, but she was absolutely fine with them today. She really does love Gracie and I think she finally realizes that Gracie should be home with us.
All of us intently staring at Gracie's monitor--watching her numbers.
Morgan pointing out all of Grace's booboos.
Looking at Grace's small feet.
Friday, September 5, 2008
Skin Graft done
The heparin was turned off yesterday, feeds were stopped at midnight, and everything was in order for Gracie to go to the OR this morning. No matter how many times I have done the walk with Grace to the OR and say my goodbyes, it doesn't get easier. Today she cried the entire walk and was still crying as I left her.
Apparently it took her a while to settle down and allow the sedation to take affect, but once she was under everything went well and quite smoothly. The plastic surgeon is optimistic that the graft will take, especially since the cadaver graft actually took and began to fill in some of the wound.
The anesthesiologist didn't want to extubate in the OR because of all the sedatives Gracie was on, so she came back intubated. It was so hard to see her with the tube in her mouth again and the look in her eyes--It seemed as if she was confused as to why the tube was back. She came back at 10:30am and the nurses immediately started weaning the rate from18 back down to 12, we did a half hour spontaneous trial and then extubated around 4:30pm. She did great, it took her an hour to get her sats stable, but she has been doing wonderfully since 6 ish.
So tomorrow we will start her on analipril again and hopefully she will do well. Luckily we have a nurse that knows Gracie--I trust her explicitly. So please pray for our Gracie these next few days, she really needs to do well with analipril.
Apparently it took her a while to settle down and allow the sedation to take affect, but once she was under everything went well and quite smoothly. The plastic surgeon is optimistic that the graft will take, especially since the cadaver graft actually took and began to fill in some of the wound.
The anesthesiologist didn't want to extubate in the OR because of all the sedatives Gracie was on, so she came back intubated. It was so hard to see her with the tube in her mouth again and the look in her eyes--It seemed as if she was confused as to why the tube was back. She came back at 10:30am and the nurses immediately started weaning the rate from18 back down to 12, we did a half hour spontaneous trial and then extubated around 4:30pm. She did great, it took her an hour to get her sats stable, but she has been doing wonderfully since 6 ish.
So tomorrow we will start her on analipril again and hopefully she will do well. Luckily we have a nurse that knows Gracie--I trust her explicitly. So please pray for our Gracie these next few days, she really needs to do well with analipril.
Wednesday, September 3, 2008
Skin Graft update
I was asked to be at the hospital this morning before 7am to talk with the plastic surgeon before the surgery. When I got to Grace's bedside i did my normal surveying of her IV tree to see if there were any changes to her meds and I noticed that her Heparin (blood thinner) was still on. This surprised me because normally for any surgical procedure it has been turned off at least four hours before hand; so I asked the nurse and the doctor and they said that the surgeon must have felt that the procedure was not too intense but she would follow up before they took Grace to make sure that the OR just didn't realize she was on it still.
So about 2o minutes later the Surgeon came by and explained that the heparin did in deed need to be off and to be sure he wanted it off for at least 12 hours (even though it only has a half life of 4 hours) because any blood clots that form could prevent the graft from taking and the whole procedure would have been lost. Needless to say we won't be going to the OR until Friday.
Other than that, Grace is doing well, just resting and gaining her strength. The doctors are just letting her be until after surgery. We did however move rooms yesterday--we no longer are in our private little room--we are out in the main area where it is quite busy and noisy. I know they moved us because Grace is doing better, but still it is a hard move--Gracie really does like it quiet. But I guess it is good preparation for when she comes home and will have to deal with the noise from Morgan and all of our freshman boys.
So about 2o minutes later the Surgeon came by and explained that the heparin did in deed need to be off and to be sure he wanted it off for at least 12 hours (even though it only has a half life of 4 hours) because any blood clots that form could prevent the graft from taking and the whole procedure would have been lost. Needless to say we won't be going to the OR until Friday.
Other than that, Grace is doing well, just resting and gaining her strength. The doctors are just letting her be until after surgery. We did however move rooms yesterday--we no longer are in our private little room--we are out in the main area where it is quite busy and noisy. I know they moved us because Grace is doing better, but still it is a hard move--Gracie really does like it quiet. But I guess it is good preparation for when she comes home and will have to deal with the noise from Morgan and all of our freshman boys.
Monday, September 1, 2008
Grace in Motion
While visiting Grace, we decided to catch her on video--she doesn't do much but is so cute and adorable. You can hear how hoarse her voice is, she almost sounds like a little animal.
Gracie did wonderful through the night and is becoming stronger each day. Today she even sucked on her pacifier for about 20 minutes!!! Hopefully she won't have an aversion to things in her mouth like so many heart babies.
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