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http://youtu.be/b0ZzaLUt6mE

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.

Beautiful girl

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!

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!

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!

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.

Withdrawl

Please pray for poor miss Grace this week. I don't have enough time for a detailed update, but she is starting to expierience withdrawl from her sedatioin. She is very very upset and is desatting alot. She is needing a ton of PRN's. They also tried the Slidenafil again, and think she is reacting to it again so they have stopped. Please pray they can get her PPHN under control with an oral med since she cant stay on Flolan forever.

A totally new baby

I can't believe how different Grace is these days. She used to throw awful fits and have so many moments of unhappiness and needed alot of extra sedation to even get through the days and nights. Whe an she moved into the isolation room, she became a little happier but still had her fits just not as much and needed sedation but not as much. Once she was extubated though, she has just soared. She tolerates things so much more, she is awake and happy alot. Grace is still weaning her sedation without issue. She goes down on Fentanyl at 9 am, Dexmedtomidine at 12 and Versed at 9pm, the full process will take awhile but at least it's happening! She is only getting 0-3 PRNs per shift as well! She is almost up to full feeds and is tolerating them wonderfully, she is having appropiate dirty and wet diapers, but is still on diuretics 2x a day. She loves being held and talked to. She starts to whimper a bit and then calms down. She had physical therapy yesterday and I heard she did great! The left side of her head is quite flat, so we are working on taking the pressure off of it, to help round things out.
She had a bath last night, and tolerated it quite well, and was fine as soon as she was picked back up. It is amazing to watch her act like a "normal" baby. She moves her hands around the way babies do, she sleeps and moves her mouth while she is. She makes these little sighs, and she yawns which is just so cute. She is just making such strides and I love it!
Nobody can believe how well she is doing! She is amazing!
We serve an awesome awesome God, nobody could look at Grace and deny that. With Him, she has overcome amazing obstacles, she is living proof of His love. From a medical standpoint, she shouldn't be here and she is. From the begining, He has been with her. A baby born with as severe CDH as her would have been intubated immediately upon birth, some babies even go on ECMO at delivery, but they certainly are not allowed to even try to breathe on thier own, it could have a hugely negative impact on thier survival. But Grace was not intubated immediately, and WAS given the chance to breathe, and boy did she try and she is doing so great now! I really believe that everyone who cared for Grace and I during her first hours were put where they were by God for Grace. Her outcome could have been alot different, if even one person had made a decision different than they did and I am so thankful.
Her care team has been more than amazing and we owe them all so much thanks for bringing her to the point she is at. And certainly everyone's thoughts and prayers and help. The Lord has used all these people to heal Grace because He is a good and loving God and when I look at Grace I am just blown away at the gift that has been given to me.
Our next steps that we could use prayer for are
Pray please that she could wean her oxygen with no issues, 4 liters is way too much to go home on!
Pray that she will continue to tolerate her sedation weans without issue
Pray that she will get the hang of using her mouth and that she will soon be able to tolerate using her stomach too
Pray that we can wean the Flolan without any worsening of her pphn.
Pray that she just continues on this forward path that she is on, until finally she is home!
Thank you so much!

Ruffle Butt. Her first outfit!

sleeping beauty

In her big girl crib!!

Thank You Miss Dacia for my jammies! After bath and ready for bed!

No tube, no problem!

Grace really enjoys not being intubated. I knew she hated that tube. She has been pretty happy without it and she loves to be held now. She makes tiny little cries and then settles down, and even went an entire 8 hour shift without needing a single PRN. She started out on 5 liters of oxygen and is down to 4. She is going up on her feeds still and is off of tpn and lipids. She likes to have her paci in her mouth and tries to suck but her mouth is weak and she doesnt really remember what it's for. But it's good she likes it in there and that she tries to chew it, we will be working on that. We are also going to start PT again, she is moving along! I am so glad she is doing so well. Thank you all so much for the thoughts and prayers.

Extubated!

Yesterday was the big day! Miss Grace is extubated with high flow nasal cannulas! She is on 5 liters of oxygen right now, which will slowly be weaned. She started off on 3 but she was desatting pretty quickly so it was bumped to 5 until she gets used to this whole breathing on her own thing! She is handling it pretty well, she doesnt seem to like having things in her nose but she will get used to it, it's better than in her throat! She also has to learn to cough up all the secretions that are in her chest and that is hard for her to learn too. She is absolutely gorgeous without tape all over her face. Her cry is so weak and quiet right now, but I couldn't help but cry when I heard it, music to my ears! Can't wait till it's super loud! I'll post a more detailed update later, but we are extubated! Please pray she does not require reintubation!

Wordless Wednesday

More progress!

I am so proud of Grace! She is doing so well! She is tolerating her feeds with no problems and I think her stomach may be starting to work, because she is not putting out much bile at all out of her tube! She is tolerating her feeds so well that they went from increasing them every 12 hours to every 8 and then every 6! She is almost halfway to full feeds now! The pressure for me to up my production is on! She has been sprinting and doing very well with it, she doesn't even seem to notice anything is different! She even threw a huge fit today while sprinting and was able to maintain her sats. We are really hoping for extubation very soon. They have her on antibiotics due to the pseudomonas and want her to have a little more of the course done before they extubate. They are still weaning her sedation and she is still doing well. She had been being given TPN and lipids for the last 2 months since she couldn't eat and tonight her TPN will run out and not be replaced! She is off lipids too, and may still get some here and there but she is well on her way to getting everyting she needs from breastmilk!
She is doing very well and I am so happy with the progress she is making!
Thank you all for your prayers and keep them coming!

My girl is a star!

I LOVE calling to check on Grace and hearing those above words! Grace has finally decided that maybe the NICU isn't where the cool kids hang out and she should work towards getting out of there! I am so happy and proud of my sweet girl, she has sprinted twice today and didn't even act like anything was going on, and her gasses during and after were awesome! She is doing so good! They will sprint again tomorrow morning and get a gas and then Peds Surg will discuss what the next step is! The big E word maybe?! She has been happy and content and sedation is still weaning and Adam held her today and said she didn't even mind the transition! Oh and they discovered that the bug that caused her pnenomonia is pseudomonas, likely due to her ET tube. I guess it's not that uncommon in people intubated and especially for so long. It's also the same thing you could pick up from a hot tub. Ew. So one more reason to get that tube out! So luckily though she was already being treated with the antibiotic that kills that, before they knew so they will keep her on it for I think a 14 day course of Zosyn. Other than that, she is amazing! I know that our downs are not gone for good, I know there will still be some hard and rocky days but I am enncouraged so much with the progress we are making. I know we still have a long way to go before we are discharged and even then the work we will have to do will be immense but I am just tickled pink with where we are right now! Thank you all so much for your thoughts and prayers, keep them coming! Pray that Grace could be extubated and that she will not need reintubation at any point. Pray that her sedation wean continues smoothly! And please pray that her stomach would start to to move things through like it should!
We have an amazing Lord and I am so very thankful for the amazing gift of grace He has given me, my sweet Grace on this earth.

And after you suffer for a short time, God, who gives all grace, will make everything right. He will make you strong and support you and keep you from falling. He called you to share in his glory in Christ, a glory that will continue forever.
  1 Peter 5:10

A G-D!

Today Grace had a GD, or a good day, but we aren't telling her that! It's funny how even the smartest most practical people are scared to jinx anything. That's NICU talk for you:) We also talked about when she goes to "the zoo" today. Not that we are close to going to the Zoo but it was nice that we talked about it in the context of WHEN it does happen instead of IF it happens. (If you aren't picking up, the zoo is home, or the h word!)
It was decided that even though Grace completely freaked out last time she was held, that she is doing well enough now that even if she cries or wiggles or anything that she just has to get through it because ultimately holding her is good for her. We want her comforted by our arms and even though it might be hard at first because she is just not used to it, we have to remember that its not that she doesn't like us, it's just that her whole life she's been laying in a bed so it might feel weird to her. And now she's not at a point where it can hurt her, she can get upset without losing her lung volumes and desatting (she still desats but not like she used to) and we just have to let her work on it. So I held her for about 3 hours and would have held her longer, but I had to go home! She was a little angry about the transition, but she calmed down quickly without the help of drugs! She stayed happy the whole time, mostly asleep. She did vomit a few times, which made her pretty upset, she really doesn't like throwing up.
They have started very slowly going down on her drips, it will take awhile to get her weaned but she is doiong good so far! It will likely take at least a month to wean the drips completely because her doses are so high, but so glad we are there! Her feeds are continuing to go up, tomorrow morning she will be on double digits! I love knowing she is getting breastmilk and her TPN is weaning!
Grace does have a small pnuemonia, but she is on antibiotics and they aren't really concerned, it is sometthing they expect. Her nurse said tonight that she's surprised she hasn't had it before now.
Grace got her chest tube removed yesterday as well as her replogle, how cute her nose looks without a hose in it!
The amount of breaths the vent delivers per minute has been decreased and she hasn't seemed to notice! Her blood gasses have been awesome!
She is doing wonderfully right now, and I am so so happy! I knew we'd get here, it just at times seemed so so so far away.
God is amazing to our family and I am so thankful for all who are praying for our sweet girl. Let's pray that these GD's keep on coming and that we take our trip to the zoo sooner than we are expecting!

Grace has had two great days! She has been happier in her quiet room and has been requiring so much less sedation than she had been before. She is tolerating her feeds, she is up to 7cc per hour! Her goal will be 33. She just looks so good. She had her MRI yesterday and we found out that she does have some atrophies on her Cerebellum, or spots where the cells have been lost. She has another spot on one part of her brain in the Caudate nucleous, called an infarct or where her there was a lack of oxygen to that part. She also has fluid built up in the ventricles of her brain.Her head circumference is also only in the 2nd percentile.  So what does all of this mean? Well they don't really know, she could simply develop at a slower rate than her peers, she could have Cerebal Palsy, she could not be able to keep her balance, she could have a very hard time walking or with coordination. They really can't tell at this point, she will just have to be watched carefully. Now, reading all the things online about all of this makes it seem bad, makes it seem like there's not alot of hope for her to not need a ton of intervention in that area. but somehow I am hopeful. Somehow I feel at peace that she is going to be ok, that these brain issues are not going to define her life or even give her any trouble. Im not sure why I feel that way but right now I am not horribly worried about it. It was however brought up,again,  whether I had had an ultrasound during pregnancy, since her head circumference was small at birth as well. The Neurologist wondered if her brain had looked fine at the time of my ultrasound. I wonder if it really did. I should take a nickel for each time in the last 2 months I've been asked if I had an ultrasound. Apparently the only thing the tech got right was that I was having a girl.
But on to a lighter subject. Grace is doing very well witht he vent weaning and today the words "extubation" and " possibly as early as monday" were used in the same sentence!!! So pray, pray hard that she has a stellar weekend and we truly can extubate next week. That woud be just wonderful and I think she would be a happier girl without that darn ET tube! They are also hoping to come down ever so slowly on her sedation, which can be a hard thing, so pray that when they do start that, she tolerates it well and does not have any setbacks due to the stress of it on her body.
I had a few weeks where I was upset that she wasn't making as much progress as we would have liked, or that in comparrison to other CDH babies she was so far behind where they were but ya know, I had to look at it differently. The way I chose to look at it, was that even though she wasn't making the leaps and bounds they were or that we would have hoped for at this point, she is making them for her. 50% of CDH babies do not survive, 50% percent! That's alot of babies, and Grace has fought with everything she has to not be part of that statistic, even though she was truly bad enough to be. So maybe she's still so far from being "normal" but she is beating the odds in amazing ways. She has come so far and will continue to beat the odds and amaze everyone she meets.

Steps in the right direction...

Yesterday morning when I called to check on Grace, her nurse told me she was propped up in her boppy! She texted me a picture that was just super cute and said that she liked it! They said Grace was not as irritated as she had been but was still getting upset frequently. When I got there last night, she was up in it and looked happy but then got upset and needed a diaper change and then decided she had had enough of her boppy. She has been tolerating her feeds pretty well, obviously her stomach is being drained by the g tube and she also has another Replogle, which is a tube through her nose into her stomach, to drain the stomach as well. I hope she can lose that soon, she hates having it in there and honestly it kinda bothers me too since the purpose of the g tube is to drain the stomach she theroretically should not need the Replogle but she does so I hope soon she doesnt. Her feeds are up to 3 cc per hour and they have been added to her daily fluid intake so her TPN is starting to be weaned! She is officially finally a breastfed baby (sort of!) She is pooping like crazy too, about 5 a day which is just great news! Things are moving like they should!
Big news for the day though, is that Grace is no longer on Nitric! Woohoo! They stopped it this morning and her first gas after stopping was actually better than the last gas on it! Her flolan is quite high, but how great that she is off Nitric and they havent even restarted Slidenafil! They will hopefully restart that next week and her gut should tolerate it since it is tolerating food.
She will have an MRI tomorrow to determine the effect that ECMO and the large large quantities of sedatives have had on her brain. She had had some spots of concern on one of her cranial ultrasounds while on ECMO but a follow up ultrasound did not show anything. Please pray that the MRI shows a completely healthy brain! She will have an ECHO on Friday to access her PPHN after being off Nitric, please pray it is still controlled or even more controlled than it was!
Pray she could be extubated sometime next week, she hates her tube and 2 1/2 months is an awfully long time. I constantly wonder what her cry sounds like..
Please pray that she is finally on the upswing, that she is finally on her way to our home, that she could finally be more comfortable and happy. I am really hoping and praying that she is finally on her way to recovery. (as much as one can recover from CDH) As each week passes, it seems as though it gets harder for everyone. Harder for Grace to stay happy, harder for her to be a "patient patient" harder for the boys to cope (which is why I am now home most of the day with them and switching evenings with Adam at the hospital) Harder for Adam and I to maintain our marriage, we communicate solely through text, or 5 minute conversations when one of us is out the door and the other is just coming in. As a family we used to do alot together and always had dinner together, now its very very rare that all 5 of us are together and obviously all 6 are never together. I'm having a hard time getting enough sleep and pumping. I don't konw if it's the stress of everything or what but my supply is just dipping constantly, it seems I cannot ever get it up to where it needs to be. I am pumping about half of what her full feeds will be. I certainly look forward to the day when our whole family can be together again and our time in the NICU can be just a memory.