Sunday, August 14, 2011

Day 137. She Rests.

If you are a parent expecting a CDH baby or if your baby is still fighting, you may want to skip this post.  If you choose to read it, please know that 50% of these babies DO survive. Do not lose hope.

Grace Fenella Hall born March 27th 2011 passed very quickly and peacefully on August 9, 2011.
Nobody is really sure what happened. I called to check on her around 11 am, I didn't have childcare for the boys, so I was going to head up after Adam got off of work, getting to her around 5:30 or so. At 11 she was fine, she was laying on her back in her bed looking at her beautiful self in the mirror. She loved looking at herself in the mirror. She knew she was the most gorgeous girl who ever lived. The boys and I went about our day. Around 2 pm I went downstairs to grab my phone, I was about to call to check on my sweet girl. As I walked into the kitchen it was ringing. Seeing the number was U of M, I didn't worry. There were alot of new CDH babies, a few in her room and I just figured the nurse was calling to let me know that Grace's room might be closed when I got there or something like that. It was one of the PA's for the surgeons. At first I still wasn't worried. I haven't worried about Grace for some time. She told me that Grace had been requiring alot more support and medications and that she hadn't been in the room yet but that Ana wanted me to know that Grace had taken a turn for the worse and wondered if I could start heading up. It is at least an hour drive and I had my kids I needed to find a sitter and wait for. STILL I'm not understanding the depth of the situation. When I told her an hour and a half, she told me to bring my boys with me and they'll have someone waititng to take them. Then I knew. I needed to get going. We got in the van immediately and still it took us over an hour because there were a TON of rude people on the road and there were 2 accidents, one was taking up both lanes. It was heartwrenching because I was freaking otu and had my boys. We were all praying, but I knew.
When we got to the hosptial, I parked illegally and we ran up there, in the hallway one of the nurses who's been with us the whole time, though not a primary was walking through. Usually she is very quick to say hi and she saw me and put her head down and kept walking. I went into the unit and Lindsay the chaplain who baptised Grace came to me and said "just wait, Ana want's to talk to you" The social worker walked out and I knew. I knew. Then when I saw Ana, it was confirmed. Ana said, "let's find somewhere to talk" and I don't even know who held me and walked me to the conference room. Ana sat me down and said so sadly, "I don't know what happened, her heart just suddenly stopped"
They brought her to me, and she was beautiful. She had nothing on her face, no nasal canulas with tape, nothing at all. She was perfect. She looked so incredibly peaceful and I really can't explain this, but having her in my arms, she still made me feel so comforted. That's the thing about Grace, she always made me feel better. Sometimes I couldn't get up there to see her as soon as I would have liked and my heart would jusst be so heavy waiting to see her. As soon as I'd get there with her, she just calmed me. She was love.
I held her and loved her and finally Adam got there (I called him as soon as I left, but he works about 90 minutes from the hospital and there were the accidents) we held her and cried together.
We gave her a bath and put her lotion on her and dressed her in a dress and loved her more. The boys had been upstairs playing with the unit host and they were brought down. They took it hard, Tyler most of all. They were able to hold her and love her too.
Alot of nurses came by and one of Grace's primary nurses came and stayed with us.
We talked about what happened. Ana said she had walked by Grace's door to get something from the supply cabinet and Grace was in her swing, being Grace. Perfectly fine. When she turned around, Grace was blue and her stats were gone. That quickly. She doesnt think Grace even knew what was coming. I am thankful she didn't suffer or struggle. They tried for 45 minutes to bring her back and they could not.
Grace was the most amazing gift ever. She showed me more in 4 months than anyone has ever in a lifetime.
We are so thankful for the amazing staff at U of M for giving us four amazing months with Grace. So many people worked so hard to keep her here and so many people loved her so much. She changed lives. To hear a surgeon say that she learned so much from Grace is amazing. 
I miss her so much, my days don't feel right without a trip to U of M or pumping all the time for her or waking up and calling to check on her. She was my girl.
We will have visitation for her on Tuesday August 16th from 3-7pm with a small service at 6. Maison Dardenne Walker Funeral Home, Maumee Oh
We will be working on a garden next week in her memory, at our home. Since she is being cremated, this will serve as a memorial place for her.
Thank you all so much for your countless thoughts and prayers over the last four months. To date this blog has over 25,000 hits. I am blown away that that many people are loving my girl and were pulling for her. We appreciate each and every one. We willmake it through this, because Grace is in Heaven right now, with one eye open making sure we are all behaving ourselves and doing what we are supposed to be doing, the right way. She can be as nosy as she wants to be now and can see everyone! She will always always live in the hearts of many.  Thank you.

Friday, August 12, 2011

On Tuesday August 16 from 3 to 7, with a brief service at 6 please come and help us celebrate the amazing life of Grace Fenella Hall. Maison Dardenne Walker Funeral Home 501 Conant St. Maumee Oh 43537

Wednesday, August 10, 2011

The sweetest Angel.

My beautiful sweet Grace was called home to Jesus on August 9, 2011 around 2 pm. My beautiful Angel.

Tuesday, August 9, 2011

Grace needs major prayers

This is graces aunt Brandi! I just got a phone call from miranda to tell everyone they need to pray!!! She got a phone call from the hospital and they told her to get up there ASAP. Grace is not doing very well and she is needing a lot of help!! Please stop what you are doing and pray!
Pray that she will be okay!
Pray that her doctors will know what to do at the right times and she will get past this!
Pray for adam and miranda to get them safley to the hospital!
Pray that the boys will also have strength!
Nothing too different going on with Grace. She had a doppler of her leg the other day to check on the clot that she developed when she had the femerol line placed back in May. Because of that clot she gets 2 shots a day of Lovenox, poor girl. The doppler showed that the clot was not there! But then I guess her last ECHO showed a possible clot at the ECMO site so they did an arterial study today, hopefully that comes back with no clot at the ECMO site and we can disconinue the lovenox. She looks like a little pin cushion with dots everywhere and brusises from them. If the DVT is gone then I'm taking credit because I've given her a few of the shots, so I must have the touch. Ha! I will be so glad though if she can stop lovenox, it's torture!
She has an ECHO today, PLEASE pray that there is SOME improvement to the PPHN. I told Grace that her next surprise needs to be to get rid of that. We'll see if she listens:) They went up on her Flolan this past week so maybe it helped. They also went down on her Sildenafil and she's been tolerating the decreased dose. So now she is on 4 different drugs for her PPHN, I really hope there is an improvement.
Grace has been weaned completely off of all sedatives and narcotics and now just has Ativan PRN's, should she need them. She has been getting about one dose per day.
Grace just can't catch a break because in addtion to everything else, she is now teething. She is 4.5 months old now, so she is following in the traditional timeframe for our kids to teethe. I wish she wasnt! She is bothered by them very much and though it's silly, its really sad to me that she will go home with teeth. She smiles but we've never gotten a huge toothless grin out of her and that makes me sad too.
They've increased her calories again so now she is on 38 calorie breastmilk because they don't think she is growing fast enough. she is almost 13 pounds which is close to double her birthweight which I think is fine. I didn't think the calories should have been increased and when I called this morning they had decreased them back to 26 cal because she wasn't tolerating the increase.
Grace is so funny, she has a few mirrors in her bed and sometimes when she gets to crying, her reflection will suddenly catch her eye and she will look at the mirror like "wow that baby just wont stop! what's your problem?!" and then stop crying and just stare at herself. Adam said yesterday taht was reaching out and touching her reflection. She LOVES to look at herself. And rightly so, she is the most beautiful girl in the world after all!
Thank you for all the kind words and prayers coming from all over. Special thanks to the Dvorak family for the surprise I got in the mail. That was way too kind of you and made me stop whatr I was doing and have a cry! please continue to pray for Grace to get better and come home. Please also pray for the families of Maddie Spence and Mattiaus, CDH babies who grew thier wings over the weekend. Also for the 4 other families in the NICU with CDH babies. CDH is just such and awful and heartbreaking thing to live through.

Thursday, August 4, 2011

Some progress of sorts.

The Grace I saw at the begining of the week, was in my opinion Grace reacting to Sildenafil (Viagra). Her symptoms though they were also those of an infection, were too coincidental with the increased viagra dose and the reaction she had before. In an attempt to curb whatever it was, she was started on IV Vancomyacin and Zostyn, two very strong broad spectrum antibiotics. They did do cultures on everything and of course nothing was growing. The concern with the infection though is, could it be her patch that was used to close her belly? (Not her diaphragm, that was closed without a patch but her abdomen  needed a patch from having a silo for so long.) Could that be why her stomach looked so awful? If her patch was infected the concern would be that it could infect the tubing in her belly connected toher shunt and then the shunt is infected as well. Not good. So they stopped putting bacitracin on her belly to let it dry out and they started her on the antibiotics. She hasnt had a fever yet. BUT the other thing they did was cut her Viagra dose in half to where it was a week ago before all of this started happenieng and she hasnt had a fever or irritability since. So which was it? Viagra? Infection? Still don't know! My instinct says viagra even though I want so so so much for her to be able to use it. So when I called today I was told they were going up on her Flolan to try to get her off the Nitric. Im not sure when she is supposed to get another ECHO but I'd like for it to be soon.
She has been having some pretty ok days. She gets fussy like a baby will but whether it was the antibiotics or the viagra she is feeling better. Her heartrate has been down closer to her baseline, she is still breathing heavier and  her sats are up but she is also on 6 literrs of oxygen.
She now LOVES to drink breastmilk. She doesnt take a bottle and she doesnt nurse but if you put in a syringe and drop it in her mouth she LOVES it. It's very cute. She had some physical therapy yesterday which she hates. Dan tries to butter her up before working with her but she doesnt buy into it. She knows who he is and she's not a fan. She has alot of work to do to get to where she should be. Some 4 month olds are crawling and she cannot even lift her chest up when prone. She will get there but it's alot of hard work for her. I cant imagine any of it feels good. She is such a tough little girl and I am so blessed to have her and so thankful that she is here with us.
Please continue to pray for baby Aiden as well, CDH and PPHN are giving him a hard time right now.
The most beautiful girl in the world

Ready for bed with her lovies

Beautiful girl

Her Belly. poor girl

Tuesday, August 2, 2011

It's August...

Honestly, I truly did NOT think we'd go into August and if we happened to, it would be a few days only. Folks we'll go into at least September.
The last week has been very very frustrating and the last 48 hours even moreso. Two weeks ago, we thought we'd be home within the month. Yes she was still on Flolan, but there was an awful lot of talk of her going home on it and being fine. Suddenly she's back on high flow and Nitric but we thought just for a short period of time. NOW, she is doing awful. There were even mentions of having to intubate again (her surgeon is NOT going to at this time but if she does'nt start improving, it's not out of the question) Grace has not tolerated at all the weaning of the Nitric, she desatted and became frantic each time it was tried. Sildenafil was started and she was tolerating it and the increase of it. Two days ago, she spiked a fever again and her white count is slightly eleveated, her heartrate is sky high and her sats are not great, she is requiring alot more oxygen and is working very very hard to breathe.Her belly, where her repair inciscion is, is awful, it's oozing and red and open. She once again is having a whole septic workup and was given blood, her flow was turned higher. The fits she's throwing are crazy, I was holding her and feared I might drop her because she was flailing around so much. She was frantic. I held her until 4 am yesterday because that's what she wanted. Today she finally calmed down after she was given some blood and cooled down and got some more flow. We had a family meeting today and the original point was to be able to iron out a plan for going home and what needed to be done before hand etc. but turned into how are we going to get Grace out of this downward spiral  she appears to have fallen into. She could be reacting to the Sildenafil again, which is an easy fix, to stop giving it to her but then obviously she needs something more than the flolan and bosentan that she was getting because she started up with these desatting episodes. Then we might have to start looking at whehter or not she has some other issue going on the cause the PPHN rather than just CDH. If she does then it's a whole other ballgame which will be much trickier and harder. She could also just have an infection that they could treat, right now she's on IV antibiotics. Please pray hard that htey figure this out because she is not doing so great. If it's the Sildenafil then that's so upseeting because she needs some major help with her PPHN. We fond out that she does have pyloric Stenosis after all but right no w nohting will be done to fix it. She is not in a position at all where she could get a repair for it. FOr a baby who does not have CDH who's only issue is pyloric stenosis, its a 12 miute laproscopic procedure, but for Grace it would be a much more lengthy and difficult procedure. So right now the plan is to hope she will grow out of it in the next ten months or so, and if she does not then they will re evaluate and perhaps she will be more stable for an operation but right now since she is fed post pyloricly it is just not worth the risk of intubation, anesthesia and opening her stomach up again. I completely agree that she's not in a postition for a surgery right now but how I hate this because she has begun loving haveing breastmilk given by mouth just a tiny bit, and I think as she gets older she wouldn't be against eating actual food, which she will not be able to do until the PS is fixed. But at least she can have breastmilk/formula. Please pray that she will outgrow the pyloric stenosis much sooner than later.
So right now we are between a rock and hard place again. If Grace has an infection in one of her lines or her shunt or her patch then that's not good. But at least it's not the viagra and we can get her pphn under control still. If it is the viagra then she cannot have it, and we are back to the drawing board with how to deal with her pphn and how do we get it under control and get her home? The options all kind of suck.
I struggle daily with just being so thankful that she is alive and taht she made it, I am SO happy she is here, the numbers don't lie and HALF of all CDH babies born will not survive and yet she did, as sick as she was/is. At the exact same time it is so hard and frustrating that she is seemingly "stuck" where she's at. She is not going to live a "normal" life by any means, she will be j tube fed for a very long time with the G to drainage ( not sure if I ever explained this one. She has a tube that drains all her stomach acid into a bag)  she will very likely e connected to flolan for quite s ome time and will be dependant upon oxygen for awhile, as it is right now, her requirements are high and if i t is accidentially disconnected, she is blue and struggling almost immediately. But yet she is alive, so I know we are very lucky. We lost another NICU friend this week, please keep the Pepper family in your prayers.  /Also, please keep a new CDH fighter in your prayers, his name is Aiden and he's in the hands of Grace's amazing team so already he's got alot going for him!
I had one of Grace's surgeons share with me the other day that as much as he believes in the medicine because that's the field he chose and that's what he is forced to know, he also know's there is something more to Grace, that she is not here just because of science. I know this without a doubt. Prayers worked to keep her here, now lets amp up the prayers to get her through these challenges and get her HOME. She is 4 months old, she will not be coming home before she is 5 months and possibly not before 6 months. It's basically hard to say at all but she needs to come home soon. She needs to for her and we need her to for our family. Our kids need both parents around, Grace always gets one, and the boys get one. Nobody gets two at the same time. We've almost depleted our savings in the gas alone it costs to drive the 2 hour round trip each day. School is starting soon, which creates a bigger challenge of how I am going to manage school pickup and drop off as well as spending time with Grace. Grace knows and feels better when I am around, I didn't believe in the begining that she knew who I was or that I was there, the nurses would say " oh she knows youre her mommy" when she was on ECMO and I would tell myself the same thing but truly didn't believe it. How could she know? But now? She knows, she knows and she loves me and she is happier when I am there and it makes it so so SO hard to leave her every night and to know that when school starts I will not be able to spend anymore than a few hours each evening with her. I will not be able to be there during the day and it hurts me so much to know that she will not have me. She does have awesome primaries who love her too, and all the other nurses do too, but there is no replacement for mommy.
Please pray that
she could come off Nitric and back to 2 liters
wisdom for her Dr's (who have already done an amazing job with her) to be able to find what works for Grace to get her home. My favorite Dr said yesterday "we will get her through this, we've all invested far too much physically and emotionally in Grace to not"
Her pyloric stenosis to resolve soon
her pphn to start to change for the better
she has a very hard time avoiding diaper rash, pray for a clear bottom!
pray for our family to figure out how to navigate this for the next few months.
As very much as we still have to overcome, Grace is truly truly a miracle. Jesus has carried this baby from the begining and has not let her go. Grace shouldn't have survived either of her transports and she did, she wasn't expected to make it off ECMO and she did, she is fighting like a champ each day. CDH babies who are diagnosed prenatally and delivered in tertiary facilities with everyone ready for them and with a plan do not survive sometimes for more than a few hours. Babies who were given excellent odds before birth, do not survive and yet she has. She has beaten every odd stacked against her and she is absolutely amazing. I have no doubt that she can get through these huge hurdles, but have no idea how long or hard it's going to be. Thank you for your contiued prayers and support.