Please go to http://www.voteforcdh.org/ and vote for CHERUBS. Learn more about CHERUBS at http://www.cdhsupport.org/ They help families of babies born with Diaphragmatic Hernia's. To win this money would help research CDH and help support families like mine. Cherubs is wonderful, they sent us an entire box full of things to help us with this time and information on CDH. Please take just a minute to help. Thank you.
http://youtu.be/b0ZzaLUt6mE
Wednesday, June 29, 2011
3 months old
Grace is off of Fentanyl and Dex and she should be off Versed by the weekend! Then she will only have Methadone to wean. She is on the Bosentan for her pphn since she is allergic to Sildenafil.Her ECHO on Friday was good so we are waiting to hear from Cardiology on the Flolan weaning process. She's moving along! She had her Gtube clamped for a few days and her stomach seemed to be moving her bile and saliva through and tolerating all her meds. Until yesterday when she started retching after her meds and then after her 9pm meds she vomitted it all, and it was a little scary because then she immediately started desatting and not coming back up at all so we feared she may have aspirated on her meds. A chest xray showed that she didn't and actually showed her left lung was much larger than it used to be. How functioning it is, is still not known but it is there! Still don't really know what happened though, because after a bit we got her settled back down no problem. Here are some pictures from last night.
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Sunday, June 26, 2011
Saturday, June 25, 2011
Wow the week flew by! The princess is doing well! Early in the week, Grace's dr's decided that they wanted to switch her oxygen from high flow with a blender to off the wall regular canulas at 2 liters. I was not so sure how this was going to go, since she was desatting quite a bit still when upset and was able to recover by being turned back up to 5 liters. Well really I shouldn't have been worried. She is doing awesome on 2 liters! When resting her sats are about 99 and 100 and when she gets upset, sometimes she doesn't desat at all, and when she does it's not awfully low and she comes back up quickly and easily! She is doing so great!
She had Physical Therapy on Weds, and she wasn't too happy but she did well, she has alot we need to work on with her to get her closer to where she should be.
When Grace used to cry she sounded so sad and pitiful and to me it sounded like crying was an awful lot of work and painful for her. Now her cry is strong, you can hear her from the door when you walk in, over the phone and she does not act like it bothers her! Her nurse said yesterday, "wow what a set of lungs she has". Amazing words to be spoken about a baby with CDH!
Grace had her hearing screen this week too, and she PASSED! Great news! Babies who are on ECMO and intubated for so long are at risk for hearing loss, but as of now she is good! Now, this doesn't mean she won't develop it at some point so she will need to be followed and has another hearing test scheduled for 6 months away. We have our first outpatient appointment scheduled. Even though it's in 6 months and obviously she would be home in 6 months it was super exciting to schedule it!
Grace is continuing to wean sedation very well, she should be off of her drips completely in a week or so unless she tells us otherwise. She is not requiring much breakthrough at all either.
And a small thing, but today she got to have her pre pulse oximiter taken off! She had her pulse ox measured pre and post, one on her hand one on her foot previously and now we just have to measure her post! Her hands are free. They also are going to try to feed her by mouth this week hopefully. Honestly not sure why we are going straight to a bottle when she cannot suck. I have been asking to have someone come work with her to get her to suck and learn how to use her mouth and keep being told "oh thats a good idea we can do that" I have been trying to help her, but really I don't know what Im doing! So I really do not think it's going to actually happen that she will be able to feed by mouth but you never know.
She is doing so well!
Please pray that she will continue to do well
pray that we can get her transitioned from her Flolan to teh Bosentan without issue
Pray that she can learn to use her mouth and that her stomach will tolerate it, right now her stomach seems to be moving, she's had her g tube clamped for a few days with very minimal retching and no distention.
We are finally steadily moving along in the right direction!
She had Physical Therapy on Weds, and she wasn't too happy but she did well, she has alot we need to work on with her to get her closer to where she should be.
When Grace used to cry she sounded so sad and pitiful and to me it sounded like crying was an awful lot of work and painful for her. Now her cry is strong, you can hear her from the door when you walk in, over the phone and she does not act like it bothers her! Her nurse said yesterday, "wow what a set of lungs she has". Amazing words to be spoken about a baby with CDH!
Grace had her hearing screen this week too, and she PASSED! Great news! Babies who are on ECMO and intubated for so long are at risk for hearing loss, but as of now she is good! Now, this doesn't mean she won't develop it at some point so she will need to be followed and has another hearing test scheduled for 6 months away. We have our first outpatient appointment scheduled. Even though it's in 6 months and obviously she would be home in 6 months it was super exciting to schedule it!
Grace is continuing to wean sedation very well, she should be off of her drips completely in a week or so unless she tells us otherwise. She is not requiring much breakthrough at all either.
And a small thing, but today she got to have her pre pulse oximiter taken off! She had her pulse ox measured pre and post, one on her hand one on her foot previously and now we just have to measure her post! Her hands are free. They also are going to try to feed her by mouth this week hopefully. Honestly not sure why we are going straight to a bottle when she cannot suck. I have been asking to have someone come work with her to get her to suck and learn how to use her mouth and keep being told "oh thats a good idea we can do that" I have been trying to help her, but really I don't know what Im doing! So I really do not think it's going to actually happen that she will be able to feed by mouth but you never know.
She is doing so well!
Please pray that she will continue to do well
pray that we can get her transitioned from her Flolan to teh Bosentan without issue
Pray that she can learn to use her mouth and that her stomach will tolerate it, right now her stomach seems to be moving, she's had her g tube clamped for a few days with very minimal retching and no distention.
We are finally steadily moving along in the right direction!
Monday, June 20, 2011
Each day, a little better.
Since my last post on Thursday, Grace has continued on the right path. Guess we'll start with Friday! On Friday they continued weaning her drips and and she didn't seem to notice much! She was fussy and wanted to be held but as long as you were holding her she was fine! They went up to 24 calorie breastmilk which decreased the amount she got, but now the amount is back up today because her weight is higher now.
Grace was also started on a new med for her PPHN to try to replace the Flolan with an oral med since Flolan is through her Broviac. Which we could take her home on, but I for one would really rather not! Not so thrilled about some of the side effects and possible risks of this new one, but I suppose it is one step at a time and we will take it as it comes.
On Saturday it was much of the same, just Grace steadily moving along, I wasn't there but Adam said she was doing good and was awake for a bit and calm! Sunday was Father's Day and we went to breakfast and Daddy got a trip to Lowes and then I went to visit the Princess. She was in a swing when I got there, fussing but her nurse (one of our primaries,, who we love!) said that she HAD been happy in it! She got her diaper changed and got Grace swaddled, she LOVES to be swaddled and then we got some cuddles in. On Sunday I noticed that she was able to get upset and not drop her sats right away and come up fairly quickly when she settled down. Sometimes without having her flow or O's turned up. Very good things!
Today Grace got off of her Fentanyl! Woohoo! Her Dex is close to off and her Versed isn't too far off! Then we just need to wean Methadone and she is drug free! So glad she is moving along with it.
A few things of concern, are her PICC line, she kicks so much and moves around so much that she causes it to bleed alot, and now she has worked a stitch loose, please pray it does not come out.
Please pray that she does not run into liver damage due to her new med.
Pray that she can keep her sats up while crying and stop needing the high flow.
Pray for her stomach to begin working, I'd love for her to be able to feed by mouth!
She is doing so so great, especially for where she was. She is just an amazing little lady and I am so so glad she is mine! Oh how could I forget, when she is sleeping she smiles in her sleep. Not while she's awake yet but alot in her sleep. She is absolutely gorgeous. Her cry is getitng stronger as well. She's doing so well!
Grace was also started on a new med for her PPHN to try to replace the Flolan with an oral med since Flolan is through her Broviac. Which we could take her home on, but I for one would really rather not! Not so thrilled about some of the side effects and possible risks of this new one, but I suppose it is one step at a time and we will take it as it comes.
On Saturday it was much of the same, just Grace steadily moving along, I wasn't there but Adam said she was doing good and was awake for a bit and calm! Sunday was Father's Day and we went to breakfast and Daddy got a trip to Lowes and then I went to visit the Princess. She was in a swing when I got there, fussing but her nurse (one of our primaries,, who we love!) said that she HAD been happy in it! She got her diaper changed and got Grace swaddled, she LOVES to be swaddled and then we got some cuddles in. On Sunday I noticed that she was able to get upset and not drop her sats right away and come up fairly quickly when she settled down. Sometimes without having her flow or O's turned up. Very good things!
Today Grace got off of her Fentanyl! Woohoo! Her Dex is close to off and her Versed isn't too far off! Then we just need to wean Methadone and she is drug free! So glad she is moving along with it.
A few things of concern, are her PICC line, she kicks so much and moves around so much that she causes it to bleed alot, and now she has worked a stitch loose, please pray it does not come out.
Please pray that she does not run into liver damage due to her new med.
Pray that she can keep her sats up while crying and stop needing the high flow.
Pray for her stomach to begin working, I'd love for her to be able to feed by mouth!
She is doing so so great, especially for where she was. She is just an amazing little lady and I am so so glad she is mine! Oh how could I forget, when she is sleeping she smiles in her sleep. Not while she's awake yet but alot in her sleep. She is absolutely gorgeous. Her cry is getitng stronger as well. She's doing so well!
Thankful
This post is long overdue and I apologize. Most of my blogging is done either very hurriedly in the waiting room or while I am pumping and doing it one handedly or in the very very early morning/late night hours when I have been awake for 20 or so hours and have a hard time being coherent and remembering what I intended on writing! I also intended on doing all of these personally or with a card and well I just can't it seems.
I have alot of overdue "thank yous". Thank you to Grandma Pam, and Grandma and Grandpa Fisher for stepping in with the kids during the first week and all the times since, not sure what we would have done alot of days without you guys. Mike and Lynette, thank you for everything, your help with the boys, and the house and prayers and encouragement is more helpful than you know. Though I am not thankful that you know what we are going through, I am thankful you know what we are going through. Make sense?! Thank you to The Kolinski's, we sure need gas:) Thank you to the BG office, your giftcard was used for the boppy that Grace LOVES, and Fremont, you know we love to eat:) and Grace loves getting lotioned up after her bath! And thank you just for supporting Adam and making his workday easier. Thank you Andi and Maya for putting on the auction and all who donated and bought, you all will never know how incredibly touched I was by that. Thank you to the Grant family, how very kind of you, I would absolutely love to bring Miss Grace for a visit to Maine one summer. Kathleen and Scott (and your beautiful babies) the bracelet and butterfly are very appreciated still. Grace likes the music now. Danessa, Thank you for thinking of our family and what a neat thing for your church to do. Dacia, it is amazing how intwined you are with the Fisher family! You are so sweet and so thankful for your gifts, Grace likes getting hospital mail! To whoever left the gas card in my pump bag, wow thank you! How sly! I was so surprised and actually cried. Stevenson's I will forever be grateful for the Navy for bringing our families together. You are so incredibly kind and I appreciate your gifts more than you can know. I still hold out hope that I will be Liz's mother in law one day!!!! Barrow family, thank you SO much for your gift. It will be so useful! Thank you to the Vineyard church. Thank you Matt for mowing the lawn a few weeks ago! Thank you to the American Legion, Ida. Thank you Helen and family! thank you Aunt Jo and Dianne. I am sorry if I am forgetting anyone at this time, I am overwhealmed with the love and support that has been given to our family. The generosity of others is just astounding. For all the thoughts and prayers from everyone, thank you! Grace is miss popular and we know that is helping her get better!
I have alot of overdue "thank yous". Thank you to Grandma Pam, and Grandma and Grandpa Fisher for stepping in with the kids during the first week and all the times since, not sure what we would have done alot of days without you guys. Mike and Lynette, thank you for everything, your help with the boys, and the house and prayers and encouragement is more helpful than you know. Though I am not thankful that you know what we are going through, I am thankful you know what we are going through. Make sense?! Thank you to The Kolinski's, we sure need gas:) Thank you to the BG office, your giftcard was used for the boppy that Grace LOVES, and Fremont, you know we love to eat:) and Grace loves getting lotioned up after her bath! And thank you just for supporting Adam and making his workday easier. Thank you Andi and Maya for putting on the auction and all who donated and bought, you all will never know how incredibly touched I was by that. Thank you to the Grant family, how very kind of you, I would absolutely love to bring Miss Grace for a visit to Maine one summer. Kathleen and Scott (and your beautiful babies) the bracelet and butterfly are very appreciated still. Grace likes the music now. Danessa, Thank you for thinking of our family and what a neat thing for your church to do. Dacia, it is amazing how intwined you are with the Fisher family! You are so sweet and so thankful for your gifts, Grace likes getting hospital mail! To whoever left the gas card in my pump bag, wow thank you! How sly! I was so surprised and actually cried. Stevenson's I will forever be grateful for the Navy for bringing our families together. You are so incredibly kind and I appreciate your gifts more than you can know. I still hold out hope that I will be Liz's mother in law one day!!!! Barrow family, thank you SO much for your gift. It will be so useful! Thank you to the Vineyard church. Thank you Matt for mowing the lawn a few weeks ago! Thank you to the American Legion, Ida. Thank you Helen and family! thank you Aunt Jo and Dianne. I am sorry if I am forgetting anyone at this time, I am overwhealmed with the love and support that has been given to our family. The generosity of others is just astounding. For all the thoughts and prayers from everyone, thank you! Grace is miss popular and we know that is helping her get better!
Thursday, June 16, 2011
Did I ever mention I hate rollercoasters?
I do, my husband went to Cedar Point with me once, and refuses to let me come again. I think the last straw for him was when I waited in line for an hour for the Mantis and then walked right through and said I would see him and our friends when they were done! Rollercoasters scare me, they make me uncomfortable, they worry me and they make me sad. I don't like to go on them and if I do, I can't wait to get off. So I avoid them.
CDH is not a rollercoaster I can avoid or get off of. Neither can Grace.
I remember early on, hearing about when she would eventually go through withdrawls and I remember watching this baby on ECMO, who if at times you even moved her, came close to dying and thinking "how hard could it be, if you are at the point where you don't need to be sedated?, how can anything be worse than this?" Well now I've found out. Withdrawls suck. Big time.
Some babies only take a few days to wean, because they are on such little sedation and they too will withdrawl. Grace at one point was on "enough sedation to kill a horse" as one of her primaries says. So her process is long, alot of withdrawling and alot of hard days.
Grace was doing pretty well with the wean for the first few days. Until she got to this past Monday. She had then had enough. All day Monday she was very inconsolable, very fussy, had alot of gas, sneezing and yawning. She was very obviously uncomfortable in her own skin. I spent 14 hours at the hospital because I could not leave her. Once she was able to calm down she was ok being held for a bit, but if you even moved she would start up again. She was getting so worked up and upset that she would desat into the 50's at times. Not good. Tuesday the surgeons gave her a weaning break and she had a better day, still sneezing and yawning and a little fussy butn ot like Monday.
Yesterday, I thought she would be ok. She had an alright night and morning and even afternoon, nothing terrible but then around 6 pm she just started up again. Get her settled and calm and then try to put her down because you needed to eat, use the bathroom or pump and she flipped out. I didn't pump for 8 hours yesterday because I just could not put her down or leave her. I left the hospital around midnight, because she had finally settled.
I called around 7 am and her nurse said she woke up around 2 and had been up on and off mostly on since then. And that as soon as you put her down, she was upset again so her and the tech had taken turns holding her all night. This is going to be a rough month of weaning. Or longer.
Please pray for sweet Grace to have an easier time weaning.
They have started fortifying my breastmilk for her, to give her higher calories in less volume. The idea is to give her as much "umph" as they can, without giving her so much volume that her body would need to get rid of. Give her body the chance and energy to work on breathing rather than getting rid of fluid. So they add 12 cc of concentrated Enfamil to 100 cc of breastmilk. Which allows them to give 34cc an hour rather than 37.
She is working on physical therapy and occupational therapy.
Neuro wants to just follow her after she goes home in their developmental clinic.
I am so so thankful for this sweet miracle that we have been given. As hard of a time as we are both having with her weaning, I am so glad we are at that point. She still has so many hurdles to climb. I heard this on the radio the other day "how do you eat an elephant?" One bite at a time. So how do you beat CDH? One step at a time.
CDH is not a rollercoaster I can avoid or get off of. Neither can Grace.
I remember early on, hearing about when she would eventually go through withdrawls and I remember watching this baby on ECMO, who if at times you even moved her, came close to dying and thinking "how hard could it be, if you are at the point where you don't need to be sedated?, how can anything be worse than this?" Well now I've found out. Withdrawls suck. Big time.
Some babies only take a few days to wean, because they are on such little sedation and they too will withdrawl. Grace at one point was on "enough sedation to kill a horse" as one of her primaries says. So her process is long, alot of withdrawling and alot of hard days.
Grace was doing pretty well with the wean for the first few days. Until she got to this past Monday. She had then had enough. All day Monday she was very inconsolable, very fussy, had alot of gas, sneezing and yawning. She was very obviously uncomfortable in her own skin. I spent 14 hours at the hospital because I could not leave her. Once she was able to calm down she was ok being held for a bit, but if you even moved she would start up again. She was getting so worked up and upset that she would desat into the 50's at times. Not good. Tuesday the surgeons gave her a weaning break and she had a better day, still sneezing and yawning and a little fussy butn ot like Monday.
Yesterday, I thought she would be ok. She had an alright night and morning and even afternoon, nothing terrible but then around 6 pm she just started up again. Get her settled and calm and then try to put her down because you needed to eat, use the bathroom or pump and she flipped out. I didn't pump for 8 hours yesterday because I just could not put her down or leave her. I left the hospital around midnight, because she had finally settled.
I called around 7 am and her nurse said she woke up around 2 and had been up on and off mostly on since then. And that as soon as you put her down, she was upset again so her and the tech had taken turns holding her all night. This is going to be a rough month of weaning. Or longer.
Please pray for sweet Grace to have an easier time weaning.
They have started fortifying my breastmilk for her, to give her higher calories in less volume. The idea is to give her as much "umph" as they can, without giving her so much volume that her body would need to get rid of. Give her body the chance and energy to work on breathing rather than getting rid of fluid. So they add 12 cc of concentrated Enfamil to 100 cc of breastmilk. Which allows them to give 34cc an hour rather than 37.
She is working on physical therapy and occupational therapy.
Neuro wants to just follow her after she goes home in their developmental clinic.
I am so so thankful for this sweet miracle that we have been given. As hard of a time as we are both having with her weaning, I am so glad we are at that point. She still has so many hurdles to climb. I heard this on the radio the other day "how do you eat an elephant?" One bite at a time. So how do you beat CDH? One step at a time.
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