9 months

Today Grace would have been 9 months old. 9 months was always a big deal to me, I don't know why it just feels like a big month. As always, I wonder what she would be like. I wonder how big she would have been, what size clothes she would have been in. When she died, she was squeezing into 3-6 mos still but most were on their way out and the majority were 6-9 and sometimes even a 12 mo since her clothes needed to be a little roomier than most. I wonder what she would think of all the rain we've been having, she would have hated it I'm sure. One drop hitting her probably would have really made her angry. (Not that she would have been in the rain much...) I think she would have liked sitting and watching the lights on the Christmas tree and I think the noise of the wrapping paper would have annoyed her.
Not a second goes by that I don't think of her or miss her.
Happy 9 month Birthday my Beautiful Girl.

Grace's Tree.

The Navy was good for our family for many reasons and one of them being the family we have accumulated along the way. Each duty station brought new friends who became our family. All over the U.S we have family we might never actually see again but who are so very dear to our hearts. From a distance so many of them have made such a difference in our journey with Grace.
One family has done something so thoughtful and touching in our sweet Grace's memory.

This beautiful tree has been planted in a park very close to our house for Grace. Adam texted me about it when I was at an appointment with one of the kids and I just started crying. I am so touched and excited over this. It is planted right by the playground in the park so when we take the boys to play we can also enjoy our Grace tree. I am so excited for the spring and for the tree to bloom. I am sure it is going to be absolutely beautiful! Thank you John, Adrienne and Jacob, we absolutely love it and am sure Grace does too!
Oh, if you are local and want to know what park this is in, contact me and I'll let you know, I'm just not wanting to post it here!

WOW!

I had the best on intentions, but fell short! I spent November not posting the way I thought but I did make a marked effort to be thankful as I went about my days. I did pretty well. At first. I kept pretty busy and stayed pretty happy. Then I'm not sure what happened but then I became a mess. Grief I suppose is that way. Stuck in my sorrow is how I've spent the last few weeks if I'm to be completley honest. Sad. So sad. I just want my little girl back. I know, I know, she's safe in the arms of God, she is not suffering anymore (because really no matter how much I never wanted to admit it, she did alot of suffering) she is in no pain, she has no annoying nasal canulas, no painful gtube to clean around etc. She is whole and perfect, even more beautiful in Heaven than she was on this Earth. But she's not in MY arms. She's not sleeping on my chest, sprawled out in a way that made her physical therapist cringe. She's not staring at me talk to her as if I am the most interesting thing she's ever seen.She is not throwing a fit so loud that I can hear from the hallway or the room next door.  Her name is rarely spoken outside of my home, by others than myself. I know she's always with me, there are distinct times where I know she's been here but it's not the same. I still want her physically here. Dressed in the cutest stinking Christmas dress ever. With one of her bows or flowers on her head. In just a few days we will pass the mark of her being dead longer than she was alive. How is that even possible? The other day we were at a Christmas party with people who we didnt know and who didn't know us. A few knew us and knew about Grace (we only actually know them because of Grace) but I mentioned the 3 boys at home and someone said "oh you have 3 kids? how old?" and I didn't tell her I had 4. I told her about my boys and not my precious girl. And I felt awful and have ever since. I didn't want to be the party ruiner. And that makes me sad, sad to know that yes, if I do talk about my daughter I am putting a damper on something, at the very least making someone uncomfortable or sad or making them feel pity on me.
I am hoping and praying so much to shed this sadness. My brain knows that I am doing nothing to honor my amazing daughter by crying and being sad and missing her, but right now all my heart wants is to see her again right now. Like yesterday.

Thankful!

I had the best of intentions but a very busy week has kept me away from posting much at all!
Last week was filled with appointments, school things and alot of sick kids and a very tired mommy! Everyone has been fighting off a nasty cold, cough and sore throat bug that seems to be going around! Over the last week, I have been thankful for many things, instead of going day by day to catch up, I would like to just list some things that I've found myself being thankful and happy for this last week.

I am thankful for my midwife that delivered Grace, I saw her last week and was again reminded of the care, compassion and support that she has shown me since March.
I am thankful for my son Tyler's teacher at school, I had a conference with her last week and I just have to say I am so very thankful he is in her class, it is right where I think he needs to be!
I am so thankful for my mother. We've had our share of rough times, but I am truly blessed to have her. She has been an immense help since March and I love the way she loves my children.
I am thankful for the Veterans of our country, I am thankful for the sacrifice of them and thier families. Having been a Navy family for 9 years I truly appreciate all they do.
I am thankful for my husband job/coworkers. I am thankful that he is able to work with such caring and supportive people who make his workday better.
I am thankful for my mother in law. She as well has been a huge help the last few months as well!
I am thankful for the life I have been given. Adam and I got married when we were 19 and 20 and over the last 9 years we have been through alot, alot more than alot of people will ever go through in thier entire lives but we always come out better because of it. I am thankful that I know that, and that I know that someday we will be able to say that about losing Grace, it's far off I know but I am thankful I have him to help me through this and am glad that he is the one that the Lord chose for me.

Despite everyone having pretty yucky coughs and colds we had a great weekend! Usually we put our Christmas tree up and Adam's village up either the day after Thanksgiving or the day after our 2nd sons birthday, the fisrt week of December but Adam kept asking if we could do it earlier since last year we were moving at Christmas time we didn't put it up. So I said "why not?" and we put it all up this weekend and I had so much fun with my kids and husband eating cookies, drinking cocoa and decorating! We were given Groupons for the African Safari wildlife park that is about an hour away so we took the kids to that yesterday and it was just a great time! You drive through and can feed Llama's Deer, Buffalo, Moose, and Texas longhorns food through your windows! It was crazy. They made huge messes in our van and stuck thier heads right in and it was just so funny, definately not something we had ever expirienced!

Days 6 and 7

Nov 6
I am thankful for my kids having friends that they love to play with right in our neighborhood. When we lived in Connecticut, we had a great neighborhood of friends. Alot of kids around the same ages and play levels, parents who we could connect with and alot of fun and memories were had.
When we moved back to Ohio 16 months ago, we did NOT have that, we didn't know or trust our neighbors, the parents had no interests in what their kids were up to and so the kids were up to no good and not good for our kids. When we moved into our new house, we suspected that there would be alot of kids for ours to play with, but in the dead of winter, it's hard to make new friends!
The summer has been filled with playing with neighbors and I am so very thankful that my boys have some great friends to grow up with!

Nov 7.

I am so thankful for Tyler. My first baby. I'm not sure how he got to be 7 years old, the time has flown by too quickly and I'd love for it to slow down. Tyler was my little buddy, not becoming a big brother until he was close to 3. When Adam was at sea for months at a time, it was me and Tyler by ourselves. Tyler took losing Grace so very hard and I am so glad that recently he is doing so much better. He is such a sweet boy and I am so proud of the little man he is becoming. He is so smart and creative and kind and I am blessed to be his mother!

30 Days of Thanks, Days 4 and 5

My goodness,I certainly tried to post yesterday and blogger was being very finicky for some reason. Alas I am catching up again.
Day 4.

 I am thankful for this little guy. My middle son, Iain. Iain is by far one of my biggest challenges in parenting. He was such an easy baby, he nursed easily, slept well, didn't cry much and was always just so calm. I thought we were so lucky to have such an easy time with him! When he hit about a year though? Boy did things change! He is one big ball of energy and will. I'm not sure if there is anyone as headstrong as this boy. But oh is he such a joy as well! Iain is hilarious and his heart is huge. Some of the things that he says just make me laugh so much and I love his snuggles. He is very much a mama's boy right now, I'm not sure I've ever seen a more clingy child but it's ok. He's not quite 5 yet and I don't mind him needing to stick close to me right now. I am so very thankful for my sweet boy.

Day 5

I am so thankful for this man. The last 11 years of my life have been amazing because of Adam. He is an amazing father to our children and wonderful provider for our family. He is an amazing husband. He is my best friend. Today he took the boys and I got a haircut and had some quiet time at home, and I am so thankful that he is MY husband!

30 Days of Thanks Days 2&3

Well goodness already off to a rough start! I was going to blog last night after the boys went tobed, and I ended up going to sleep at 9pm after I got them all in bed! So two days today!

Day 2.
I am thankful for the kindess of strangers.
Throughout Grace's life and now after, we have become aware of many people who we do not know praying and thinking of us. Some have done such wonderful things for our family. I am so thankful for many people who have introuduced themselves to us because of our girl.

Last night was a pizza party for Iain and Isaacs soccer team that they played on during August, September and October. It is just a team through the YMCA but the coach wanted to do a little something extra for the kids and it was so nice. While we were there, the coach and another mom started talking about the number of kids they had. They said to me "you just have these 3?" and after momemtarily panicking, I gathered my courage and I said "No, actually I have 4. I have a daughter as well but she passed away in August." To be honest, oftentimes even with people close to me, if I mention Grace it's like I just said something awful and the conversation ends and I've made people uncomfortable. But last night? With two women who I've not really spoken much more than greetings to at soccer was different. They both said they were sorry and then the one mom asked how old she was and I talked about her. Then she asked what her name was. That might not sound like anything big, but it is. To have a stranger wonder what her name was, and for me to speak it. It just made my heart feel good. I am thankful for thier kindness.

Day 3

I am thankful for the people in this picture. Without them, I would not have been able to make it through losing Grace. You see, more than even my longest friends, the people in this picture unfortunately know exactly how I feel. We all lost our babies within 6 weeks of each other, our babies all lived thier entire lives in the same NICU and now live thier eternal lives together in Heaven. They probably don't know just how much being able to text, email, facebook and see them has gotten me through this. Though I hate the circumstances under which we all met, I am forever thankful for them.

                                                      A little sunshine on a chilly day!

30 Days of Thanks. Day 1.

I hit a rough patch recently, I don't know why I was just so sad. Missing Grace so much. I need to greive her but I also need to be together for the children I do have at home. Something that got me through the very begining (besides shock I guess!) was I forced myself to focus on the wonderful times I had with Grace. Like to think about and be thankful for the amazing snuggles she gave me, or for the smiles I had from her, or from the times when she made it obvious that she wanted ME! To focus on that instead of everything I will never have with her, did help me. I think I got out of the habit of that, and just thought of everything I didn't have with her. So, in an effort to keep myself on track and count my blessings I am going to try to write each day about somehting that I am thankful for. I do truly have alot to be thankful for. I don't have my beautiful girl, but I am not left with nothing.

Today I am thankful for living in a wonderful neighborhood with great neighbors. I feel safe in my neighborhood and didn't worry about what kinds of people were passing out candy to my 3 sons and nephew last night. I love the company of another neighbor while walking. After Grace died, my neighbors all brought us food and have prayed for us and supported us at Grace's memorial. I am very thankful for living where we do.

7 month birthday

Today my little Gracie Girl would be 7  months old. She has been gone for 11 weeks. Somedays it's still very hard to even believe it. I wonder what she would be doing, I wonder how much bigger she would be. I know what my boys did at 7 months, and I know she would not have been close to what they were doing but I know she would have been reaching her own milestones at her own times. The weather is getting colder, and I wonder how she would have looked in her cute sweaters I have hanging in her closet. I wonder how many teeth she wouldhave had by now, she was working on them before she died. I wonder, if she had lived, would I have her home right now? Or would I still be spreading myself way too thin, all over the place trying to be at the hospital for her and trying to still give my boys what they needed? I wonder what I would have dresses her as for Halloween? I wonder how much hair she would have, it had started to really grow the last few weeks before she passed.  I miss her so much.

These are the hard times coming up for me, a year ago today actually we walked through our house for the first time, I was 18 weeks pregnant with her and just so happy. We found what we thought was going to be the perfect house for our 3 boys and 1 sweet girl ( I didn't know yet she was a girl, just had a hunch) On Nov 6, we found out we WERE having a girl! I was ecstatic, I wanted a girl, LOVE my boys so much but I was so ready for some pink, we had our offer accepted, we had a closing date, we had a HEALTHY GIRL on the way, life was good! I wish I could go back to last year. I wish when I had my ultrasound and the tech kept saying that she had a hard time seeing everything because Grace was rolled tightly in a ball, I wish I would have not accepted when she said she was finished becuase she had gotten a "good enough" look and requested a follow up. Maybe then 7 months ago things would have turned out much differently and I wouldn't have had to leave the hospital for the final time, empty handed 11 weeks ago.

But all of that, doesnt really matter because as much as it is hard for me to accept, everything was part of Grace's purpose. I suppose she wouldn't have touched as many lives if we had gotten the diagnosis prenatally and things had began differently, I don't know.

I miss her so much, I love her so much and I know that one day, I will see her again. I am trying so very hard to hold onto that, I know she is waiting for me, I know she wasn't "taken" from me, rather I was loaned her for a short time and though in my mind that time was not nearly long enough and in that time I didn't get all that I wanted with her, I know that it was all the time she needed to fullfill her purpose.

I believe that God does have a plan for all of our lives, He knows what is to come for me and for my family. I have a hard time being able to visualize the days when my heart is not crushed and consumed with grief over Grace, the days when I can truly say once again my life is joyful and the good days far outnumber the bad days. But I believe they will come, someday. I think of this verse often

          I will restore to you the years that the swarming locust has eaten, the hopper, the destroyer, and the cutter, my great army, which I sent among you. You shall eat in plenty and be satisfied, and praise the name of the Lord your God. 

I miss you beautiful Grace.

A Walk to Remember

On Saturday October 8th, one day shy of Grace's 2 month "angelversary" (did you know that's a term used for the day your child died? Makes it sound "better" I guess) we went back to U of M. Each year they hold a Walk to Remember and Tree Planting Ceremony in memory of all the beautiful babies lost. It was the first time we had been back up there since Grace passed and as we got closer it got  harder. I'm glad Adam was driving because I might have turned around. It was just so hard as we got closer because I started remembering how when she was here, I would love getting closer because I was almost to my girl! We met up with 3 other families that lost thier sweet babies, I've blogged about them all before actually. Emma, Eva and Aiden families, it was nice to see them, as they've all been a big part of my healing process. We had dinner with them as well as another family from the NICU.
There were two speaker, one Neonatologist, who I remembered seeing but honestly don't know if she ever had anything to do with Grace. But what she said made me cry. Then there was a parent speaker. A woman who had lost her son 19 (i think) years ago. Her son lived a much shorter life than Grace and did not have CDH but she just reduced me to a sobbing mess. She spoke of many of the feelings and emotions that I have, but her son also arrived atHolden like Grace, as an emergent transport which just made me think about the day Grace was born and just how incredibly scary it was. Then we walked through the Arboretum and had a short ceremony for the tree planting. The tree was an Apricot Brandy Magnolia, it was already planted but we all had the opportunity to help mulch it. It was actually a very healing day for me, I am so glad I went to it. Somehow it helped. We went back to the NICU afterwards with Emma's parents. It was nice to see some of the staff that was so helpful to us along the way.
 Not a second goes by that I don't miss her. Before I was even pregnant with her, I knew one day I would have another baby because it always just felt like there was someone missing. I didn't know who, but I felt like when we were all together, our family just wasn't complete. It's so sad to still feel that way, even though I have carried and birthed 4 children.
I haven't really been around here, I've had alot of just awful very sad, very hard days. So much I don't understand and never will and am not supposed to. Sometimes I am so ok with that, sometimes I can accept so readily and easily that she passed, it was just her time, just her purpose and others, I am driving myself crazy with "what ifs,if only's and whys" I replay the day of her death in my head because I just do not understand it, I do not understand what happened. I have so many questions about htat day that I didn't even think to ask then. Ilook at her pictures and cant understand how a baby so FULL of life could die, some pictures, if you took the nasal cannula away, you wouldn't be able to tell anything was wrong!
But mostly, I am ok, we are ok. I would have considered Adam and I to have a good, strong marriage before, but through this we are stronger. I would have considered myself a good mother before, but through this I am better.
I will NEVER get over this, but somehow, I AM moving THROUGH it. I'll never understand why I didn't get to keep her, but I am so very glad I got the time I did with her.
We planted her garden, next spring we will do even more. I am happy with it. There are alot squirrels playing and digging in it, but the plants do seem to be doing pretty good. I like having it, because somehow it feels like she is here with us.
I'd like to thank everyone for thier support and love through all of this. So many have reached out to us by this blog, facebook, email, regular mail etc. Some of you, we don't even know! I am slow to get thank you's out but please know that not a single gesture of kindness has been in vain or unnoticed. At times Ive been overwhealmed with how great you all are! Thank you all so very much.

Update

Ive tried to come back here and write, to write about Grace's funeral or other things about her or  write about my feelings, my brokeness. Each time I try, I cannot. I'm not sure why but I cannot bring myself to write on this blog or publish the few posts I have attempted..I do not know why. I know I still have alot of pageviews so, I wanted to say, I am surviving. Barely but I am. I have 3 sons so to not is not an option. Inside I am just broken. There is no other way for me to describe how I feel. Maybe it's just too painful. Maybe this post will help to bring me around to writing again. I don't know.
I would give anything, in a heartbeat to have the most beautiful girl in the world back in my arms. I wanted to bring her home so badly, but if it meant having her alilve, I'd drive to U of M every day for the rest of my life.
Please don't stop thinking of my absolutely amazing daughter. She may not have survived CDH and PPHN but she was an amazing fighter.

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.

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

The sweetest Angel.

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










miranda.j.hall@gmail.com

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.

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

b

Ready for bed with her lovies

Beautiful girl

Her Belly. poor girl

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.

17 weeks

They went down on Grace's flow today, back down to 2 liters on a blender with the Nitric still at 20. Sildenafil  has been being given for over 24 hours now, such a low dose but so far so good. I dont know when they are going to get an ECHO I don;'t know when they are going to wean Nitric.Grace has been ok. We napped together for a bit today, one of the sweetest things about having a baby is falling asleep with him/her on your chest, I'm glad that's one thing we didn't completely miss out on with her.
she likes having kisses on her cheeks and chin, she sort of smiles for it. I might take a purposeful blogging break, to be honest my hearts not really in it right now. day to day  nothihng really changes, pphn stays the same, stomach stays the same, her mood stays the same her reflux stays the same. Im sort of quite discouraged by the lack of progress lately, and just feel like taking a break, so I suppose no news can be considered good news or exactly the same news. if anything astronomical happens, I'll come back.

5 am phone calls

Are never any fun especially when they are from your childs surgeon. Grace had another huge desat epidode this morning but I guess it was worse than ever and they put her back on high flow and also back on Nitric Oxide and gave her a blood transfusion and are giving her extra diuretics. They are going to try slidenafil again and see if maybe she can tolerate it yet. PPHN is what is holding her back from home, though it is much more controlled than it was, it's still not controlled enough for her to be off of Flolan or to not desat like she has been doing. At some point she will outgrow the PPHN as she gets bigger but I'd kind of like her home before then. There are 4 more weeks left before school starts and honestly I really thought we'd have all 4 of our kids home for a bit before then, but its not going to happen.

No change

Grace had her ECHO today, no change. So frustrating. Waiting for word from Cardiology as to where they want to go from here.

The weekend.(and the first half of the week, since Ive been writing this for 4 days)

For the most part, Grace had a good weekend. On Saturday she had a cranial ultrasound to check on the fluid levels in her venticles because Friday night I guess she was just very fussy. Her nurse described her as "her pre shunt self" but the ultrasound was fine and she went on to be fine. So on Saturday she got to play wiht her big brothers for a bit, this was the first time they had been up to see her since the shunt. She was a little fussy at first, but then she ended up not minding them and she liked when they held her hands. The boys were so excited and happy because we let them hold her. She lounged in their arms and was pretty happy.However, then something scary and unusual for her now happened. She started to fuss just a small amount so I started changing her diaper, she wasn't even screaming or that upset. Then she started to desat. Big time. She went down to 31%. For a number that should be as close to 100 as possible, that's not good. She was very pale, limp, quiet, and blue. She recovered with a few minutes of extra oxygen and then was fine, back to satting 100. They did a chest xray and it looked fine, we have no idea what happened. It was pretty scary but she has been fine since.
On Sunday I got to take her for a walk around the 4th floor wiith a nurse. Grace really liked being in the stroller just strolling around, we only walked for about 10 minutes.
On Monday we gave our first try at nursing. It didnt last long and though she didnt hate it, she didnt love it either, and didn't really know what to do. I'll spare the details but will share if you are interested. Tuesday I tried again and it was an immediate fail/freakout so I'm not sure I should try again. She obviously wouldn't be doing it for nutrtion as she is fed bypassing her stomach but maybe for comfort and practice using her mouth.
This morning I was told that by her nurse (who is one of her primiaries, so she knows her well) that Grace got madder than she's ever seen her and she desatted very low. The monitor read 12 but she was kicking and moving so she's not sure if 12 was accurate because you would think at that low she would be passing out, but she was dusky and her lips were blue so she was very low nonetheless.
Tomorrow is ECHO day, we'll see if upping her oral med and switching to jtube for meds has made any difference in the pphn. I really hope so.
I'll try to update again tomorrow, I know I havent been keeping up on it as much as I'd like, most days I don't get home from the hospital until after midnight and if I am home before then theres entirely too many things to do around here. Please continue to pray that she might turn around on the pphn front. It's basically the one thing thats keeping her there, but unfortunately its a very very big thing.

16 weeks?

Sunday marks Grace's 16th week of life, 16th week of NICU visists, 16 weeks of this beautiful little girl fighting each day to live. Grace is so alert and so much more like a "normal" baby these days, everyone says "she likes her shunt" and it is so amazing to look at her and remember where she has been the last 16 weeks. I never thought it would be true but looking at her, it is seriously hard to ever picture her as the same baby on ECMO with her intestines in a silo. I found a picture on my phone that Adam had texted me months ago, of the vent showing she had .8 lung volume, how excited we were, how far we've come!
Grace got her PICC line out on Monday, so exciting. The PICC had delivered all of her conintuous drips, she is off of all of her IV sedation/painkiller meds and is weaning the oral Methadone and Ativan. The PICC could also give any other meds she might need, but she doesn't really need anything extra these days and it could be used to give blood, but aside from a transfusion after her shunt surgery she hasn't needed blood in a really long time, and the PICC was being used for drawing blood gases, which we don't really need anymore either! It's very exciting that she doesn't need that port! Now Grace is down to two pumps on her IV pole, 2, there was a time when she had the double pole, plus the one on her isolette AND pumps running off ECMO. Now she only has her Flolan and her feeding pump. That's IT. She is still connected to the monitor, one wire running from her leg and 3 leads on her chest/belly and she also has her g tube to drain into a bag so she is not completely "wireless" but so so much more than she used to be!
Grace has been smiling, it is the most amazing thing ever. I just sat and cried the first time she did, I couldn't help it, I am just SO happy. She has this mobile that she used to love and for awhile just didn't even give it the time of day, but we kept it, thoping one day she would like it again and she does! She LOVES to watch her bugs go around and sit in her vibrating bouncy seat. She loves to sit in the door of her room and watch all the people in the main room, she's a nosy little girl. Sometimes she just complains, she is perfectly fine and satting great and nothing is going on but she is wide eyed and yelling. She has quite a story to tell and wants to make sure everyone is aware of her presence. Last night when she got her breathing treatment (she gets them 2x a day) it was so cute, because she was screaming but she wasn't actually crying and she kept looking out of the corner of her eye at the RT, as if to say, "she's still here? Go away!"
Though she is doing better than ever, there are still a few things we could really use some prayer for. The Lord is amazing and has worked in wonderful ways in Grace's life, she's such a miracle I know we can overcome these next few things that we need to!
1. Grace really needs her pphn to improve more, her ECHO's have been unchanged for quite some time now, obviously great that it hasnt gotten worse but we need them to improve so that she can start weaning FLolan. Flolan is a 24/7 coninuous drip through the Broviac in her chest that is to help her pphn. The ideal thing is that she goes home off of it, and her pphn is controlled by oral meds. She is at the max dose of it. But until her pressures lower more she cannot wean Flolan.
She is on a med called Bosentan which is oral and her dose is being highered every other day on that to see if it helps and they can wean Flolan. If her ECHO remains unchanged after the higher dose of Bosentan then they are goign to see if they might be able to try Sildenafil one more time to see if it helps. If not then she will go home on Flolan and in time hopefully her lungs will grow and develop better and she will be able to wean it. They have switched from giving her meds through the G tube, into her J tube thinking that perhaps her stomach isn't completely absorbing the Bosentan which is maybe why her ECHO hasn't changed.
2. Grace's abdominal incision is having trouble healing, most of it looks great and in fact is so light it's already hard to see. One spot however has always been a little bit of a troublemaker. It had healed up ok and is now broken open and has even started to bleed. Please pray that this wound can heal quickly.
3. Please pray that her stomach would just start to work. Pray that she could begin moving things through, right now, she is putitng out so much bile into her drainage bag, and they aren't sure she was absorbing the meds, please pray that her stomach will just wake up soon and begin working like it should so that we can start feeding through the stomach like normal or even just that she would tolerate moving her own digestive juices through and we could clamp it and not have to have a huge drainage bag.
Grace also has awful reflux, please pray that it might get better.
Even aside from all of those things, she is doing amazingly well. She is so so gorgeous, I just cannot belive how great she looks after the shunt. I am so glad. We are so incredibly blessed to have our sweet girl, she beat some incredible odds. 
Please also pray for a family we met in the NICU who's own sweet girl went to be with the Lord over the weekend, our hearts ache for the Martin family. As close as she sometimes came to joining the 50% who do not survive, I cannot even imagine it actually happening, and how hard it has to be.
I heard a song on the radio recently that I am in love with, by Stephen Curtis Chapman and it says "and tell the story of grace with every move that you make and every little thing you do" Grace has certainly lived up to her name, each day of her life has been telling the story of Grace, what an amazing little blessing she has been, not only to us but to everyone else who knows her.

The surgery, recovery and self extubation......

So I mentioned that Grace was doing well after the surgery, and each day seems to be different. When she came back, it was around 10:30 pm and it was pretty hard to see her intubated, sedated, and bandaged again, she was also orange from all the betadine that they clean her with to keep her sterile. She stayed sedated the night mostly, she opened her eyes a bit but was very out of it. They got a blood gas and the RT's felt she might even be a little over ventilated. The next morning they made one change to the vent and said they were nervous to extubate too quickly given her history. They wanted to wean slowly. All day Thursday was spent trying to keep her from pulling her tube. IT was great though because you could watch her look at the tube and then grab it, she never really had much hand eye coordination before and now she does. She tolerated being intubated alot better than I thought she would. Yesterday she wasn't as eager to pull it, she behaved herself a little more. I held her yesterday and she kept moving her head and pushing with her feet, trying to get it out though. She finally got the MRI, it kept getting pushed back until around 10 pm! She only needed morphine and ativan, much better than her first one where she required general anesthesia! They did a sprint overnight and while she did good, she got tired and her gas was ok but not great. So they wanted to sprint her again a few times and a gas tomorrow morning. The sprint during the day went well and then after lunch I held her. While I was holding her she needed to be suctioned and she hates that, I hate it too. After she was suctioned she started vomitting and after that, she started moving her head like crazy and i was trying to stabilize it. All the while I was watching her tube and it was taped. then I realized that though the tape was all intact, the tube was moving in and out of the tape. I yelled for her nurse (Amy, one of our wonderful Primaries) and she came in and looked and said well she's not vocalizing and she wasn't desatting so we thought it was still in, she checked it out and turns out the end of the tube was just inside Grace's mouth. She extubated herself! They got some nasal cannulas and put her on 3 liters off the wall and she is fine! She did not want to wait for the surgeons to call it, she said she was ready! An hour later they got a gas and it was fantastic! So though I am obviously not happy she needs a shunt I am glad she has it now because she really seems to be doing better now.She is focusing her eyes on you now and she is trying to reach for things and she is bringing her hands to her face, doing so many things she wasnt! I pray this is the last thing we have to overcome before home. One of the things that is worrisome though is how her abdomen is going to respond to the extra fluid being shunted in, so pray that this all works as it should and she can finally be on the road to recovery.

Doing well

Sorry I have not updated since the surgery. Grace was not down in surgery for as long as we had feared because they were able to go ahead and place the tubing into her stomach rather than have to figure out how to get it through her heart. SO overall it only took her about an hour. The neurosurgeon said it went as well as he would have hoped on his end, however sedation was an issue as always with Grace. She is still intubated, which really stinks. SHe hates it still, but is much more tolerant of it than she was a month ago. They are being very cautious of extubating too quickly because of her PPHN. She is awaiting an MRI hopefully later today and then if she tolerates that well, then we might be able to continue weaning her vent today and hopefully extubate tomorrow. I will post a more detailed update later, but she is doing well right now. It seems she is much less irritated, perhaps she did just have a headache her entire life.

Surgery again.

This morning when I came in, Grace had had the cranial ultrasound and her nurse was waiting for the final results. She paged the PA for Grace's surgeons and she came down and talked to me. She said they got the report back and Grace did have fluid accumulation around her brain. Hydrocephalous. Neurosurgery came down and checked her out and talked with me. They said based on how her head was bigger than it should have been, and her ultrasound and the fact that her eyes were downshifting and she was very irritated but in a different way than normal, were all indicative of Hydrocephalous. So the solution is to place a shunt in her skull. She will have this rubbery plastic piece that sits on her brain with tubing through and down to her stomach to drain the Cerebral Spinal Fluid from her brain to her stomach, where her body will hopefully reabsorb it. The shunt will be permanent, and she could possibly need numerous additional surgeries. They know some people do not need more than this one, some need just another and some need up to 10 more just depending on different factors. With Grace having had her CDH repair, then having it opened again to place the GJ her stomach is compromised so they may not be able to place it there, if they cannot place it there then they will need to use her venous system. Which in Grace is tricky since she was on ECMO she does not have use of her right jugular and Carotid artery, so they would try to go on the left but she has a Broviac in her right subclavion so then there are challenges finding where to thread it through. So hopefully they can go to her stomach.
Grace will intubated for her surgery and will come back from surgery intubated and it will be very hard for me to see her like that again. Hopefully she will be able to extubate soon and not have any issues coming off the vent, she was doing so well before. She is down in surgery right now, and it's unkown how long the surgery will take.
Please keep thinking of her and keep her in your prayers. I really hope this is the last hurdle she has to jump.

Grace is having a cranial ultrasound this morning to check for fluid in her brain. Please pray they do not find anything, as it could be a scary situation. I will post a more detailed update hopefully later but wanted to get the prayer request out.

Alot of the same.

Grace has an ECHO tomorrow to assess her PPHN and see how well the Bosentan is working and then hopefully we can develop a plan for weaning Flolan. Please pray her ECHO is awesome and we can finally start the wean and that her PPHN stays controlled without it. I am so so anxious to just get moving. I just want her home, to have our family whole again.
So please pray for more improvements for Grace, though she has come so so far, she still has so so far to go.

Vote for CDH

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

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!