Another surgery down.

I lied on my last post, Grace had surgery today instead of tomrrow. That's how things work around here, nothing stays the same for long! She had a good night and morning and then went down for surgery to put her intestines back in and close her abdomen. They had thought she might need a patch on the outside, but she only needed a mesh patch that was sewn onto her abdominal muscles. Her skin on the outside was able to be closed on it's own though. So the patch on the inside shouldn't have as high of a risk of infection as a gortex patch would have. Down the line they may need to go back in and give her a tummy tuck of sorts if she grows, since the patch will not grow with her. We will cross that bridge when we come to it.
She was started on Octreotide for the Chylothorax, which brings with it its own risks and side effects. One of which is Necrotizing Entercolitis. They don't know why some babies on Octreotide get it, but they do sot hey will watch her carefully for it. She is already outputting less than she was so they might not need to have her on it for long. I hope so.
When we got here last night, she was wide awake and just staring at the pictures we have on her top. There is one of the boys and one of our family. She loves to look at them. So then we read her a story and talked with her and the RT came in to do her breathing treatment. She is so funny because when she is awake she will watch intently whoever is messing with her. She wants to make sure if someone is in her house,t hey are doing things correctly!
Please pray that Grace will recover from her surgery quickly and with no complications. That the chylo will resolve quickly and there are no adverse side effects from the treatment of it.
Pray that her pphn does not worsen due to her intestines taking up more room in her body than her lungs are used to.

Neverending

Grace had a very good night, she tolerated being moved around and messed with quite well. She was awake on MOnday from about 6 pm until 11 pm. Her blood pressure rose a few times but not too high and mostly because her neighbors were crying. Grace doesn't care for apartment living. She was trying so hard to stay awake, fighting sleep just like a healthy baby would be. Both of her eyes were so wide open and she was trying so hard to smile at me. She got a few half smiles out. She seems to be alot more comfortable and happy than she has been. Her road is still quite long and hard though.
Grace has two chest tubes, one was placed when she went down for her initial repair surgery when she was 2 days old. That one has mostly stopped draining. She also had one placed on her right side about 2 weeks ago or so which is still draining a significant amount. Her dr's now suspect that perhaps it is a chylothorax, meaning her lymphatic fluids may be leaking into her lungs. They sent a sample of the chest tube fluid to see and we should know it it is that or just alot of fluid still coming from that side. If it is chylous then they will decide whether or not they need to go in and clear it out or if thye can just treat it with another IV medication. When it comes time for her to finally be on feeds, they will probably give her a special formula. I don't know if that means always or just for a time. As each day goes on, it becomes more and more clear to me that I most likely won't nurse this baby and it breaks my heart but as long as she's here I guess it doesnt really matter in the big picture.
Grace is also scheduled to go to the OR on Friday to finally put her intestines back in and they will put a gortex patch in to close her. So she will not have a silo anymore but instead will have a patch on her stomach. It will not be skin colored. She has to have this because, when they did her repair before they didn't want to squeeze everything in and then have her swell up alot on ECMO and have issues. So they left a little of her intestines in a silo. they had planned on cinching it down a little each day until it was all the way in and then close her up. Well she started having so many other issues taht her silo became the least of her worries. Since her skin has been stretched open for a month and the silo popped out numerous times and had to be sutured back in, they just don't think he skin will be able to stretch enough to close.
I was so happy when they were able to do her repair without a patch because it can cause all sorts of problems later on down the road. This gortex pactch will come with the same problems and that's upsetting to me.
Overall she is doing alot better than a week ago and considering all the things she has been through she is doing very well.
Please pray that her pulmonary hypertension can be brought under control. She is on Flolan for it, and they have just upped her limit on that, she should reach her limit by Thursday and they will repeat her ECHO(echocardiogram) then, please pray it shows improvement. Right now she does have a very strong healthy heart but that could change if her pphn does not improve.
Pray that her repair goes smoothly. I hate sending her to the OR.
Pray that she does not have a chylothorax, though it can be fixed it just adds more time and steps to getting her home. 
Thank you all so much for your thoughts and prayers, they are very much appreciated even if they are not immediately (or at all) responded to.

pulmonary hypertension

Grace had another ECHO today, the hope was to do the echo and then take her off nitric to see what the echo showeed with no nitric. They never even stopped the nitric because her pulmonary hypertension was not improved enough for them to try. Pulmonary hypertension is something all cdh babies deal with in some form. graces has always been profound and still is. it is the biggest hurdle that she needs to get over. please pray that the pphn would start to lessen and finally resolve.

4 weeks.

Today on Easter Sunday, Grace is 4 weeks old. 4 weeks ago was supposed to be the start of some of the best days of our lives. A new baby is the most amazing gift, and this new baby was so so wanted and loved and very anxiously awaited for. I never could have imagined the past 4 weeks would have played out the way they have.
I don't even know how to put the last 4 weeks into words. Last night for the first time in 4 weeks all 5 of us spent the night at home. The first night there was not one of us at the hospital with Grace. Honestly we should be excited about that. It meant we were comfortable enough with her progress to do it, to give our boys some normalcy. Iain was so excited, he said "you are both sleeping at home!?" Its sad that he's grown used to only one parent or just grandma. So then we all drove up to Uof M this morning. Coincidentally we were driving through at almost the exact same time we first drove up to U of M four weeks ago. On that drive 4 weeks ago I had no idea what was coming, no idea what was in store for us. I remember feeling so dizzy as we walked that long walk from the parking garage to the NICU (hey I had just had a baby, 10 hours earlier!) and going to the wrong place and the nurse telling us "only healthy babies are over here, you need to go down the hall" and that hurt, I don't know why but her words stung. It was all like a bad dream. When we walked into her room, there were probably 25 people rushing around taking care of her. I think that was when it hit me that she was really sick. Somewhat sick babies don't have that many people rushing around them. She's come a long way since that day.
Grace has had more good times. her Nitric was weaned from 80 to 48, which they did do last week but she didn't tolerate it so they went back up. Let's really hope and pray that they can leave it and keep weaning, the goal is obviously 0. She hasn't been desatting, even when she's awake! she is able to stay awake and go back to sleep without having to be given a PRN of anyting. Before they do assesments and move her they give her something to prevent her from getting worked up but otherwise she is fine. She has actually been suctioned a few times without having had "happy juice" and tolerated it. She is doing such a good job. I am so proud of my little girl. She was awake Friday night for close to an hour and was tolerating having her top up and so I was able to pull a chair up right to her and talk to her and be face to face with her, talking and making awesome eye contact and kissing her. It was amazing. It made my heart just soar. I think she liked it too!
Today for Easter we brought in a dress, and obviously she can't wear it yet but we drapped it over her and took some pictures with her dress and hairband. She tolerated it very well and was so dang cute. She was even awake for it, so it was so so cute.
Big thanks for the last four weeks are in order. Thank you so much to the "Easter Bunny" who left the kids goodies on our porch this morning. They were so so excited and surprised! (us too!) Everything was very well recieved and all has been put to use already! Thank you so much to the Schaefer family, for driving from CT to help us out last week. I will always be so glad and thankful that the Navy brought us together. Andi and Maya (though I don't know you, I think you must be awesome!) for doing an online benefit. I can't tell you how humbled I was, when I was finally able to hop on over towords the end. Everyone involved in anyway with that, is amazing. Thank you Lynette for bringing dinner last week. Yum! Thank you to all the people who have sacrificed thier time and time off work for watchign our boys. Bowling Green SS, thank you for the card and gift card! Fremont SS, thank you for your care and and for giving Adam the ability to not worry about work. I promise he is coming back! Thank you to everyone who has helped out in any way, thanks for the thoughts and prayers. Please pray that Grace will continue to improve and that we will be able to bring her home in a few months. Pray that we will continue to be able to weather this storm, it seems it is getting harder to juggle everything as the days just keep passing. Pray that Grace can continue to tolerate all they are doing to her. She is such an amazing girl. I am so proud of her!

A good day:)

Today I left the hospital feeling more encouraged than I think I've felt in almost 4 weeks. Grace stayed very stable all day, I've realized that even if we aren't making giant leaps, stable is still a very good thing. About a week ago they started Grace on a paralytic drip, whereas before she was only getting PRN's of it, which would only last about 20 mins or so. She could not be awake without getting so worked up and drop her sats and raise her blood pressure. We didn't have any open eyes or arm or leg movements or finger squeezes (I like to think when she squeezes my finger, she's telling me she loves me, and knows it's me)while she was on the drip, but today they STOPPED it! She was able to wake up some today!
When I got to the hospital she squeezed my finger and she was starting to open her eyes a little but not much. I left for a bit and when I came back, Jamie her nurse said that she had been awake while I was gone! I missed it! Later on though, I had went back to the Ronald McDonald house with the boys and Adam and was getting them ready to come back here and Adam's dad was visiting Grace. He called and said she was starting to wake up, so I RAN back to the hospital and those sweet little eyes were open and her little legs and arms and hands were just moving around!!! And she stayed awake for about 30 mins without dropping her sats at all! Her breathing was a little uneven and over the vent but her sats didnt drop! I was able to clean her mouth for her and she tolerated it, and I she looked at me while I talked to her. It was just so amazing.
Earlier in the day they needed to change the blanket on her bed, there was some type of drainage on it, that we never could figure out where it came from. To change her bedding, one person gets the new blanket ready and the RT hold her ET tube (her breathing tube) and then somebody (or 2 or 3) lift Grace a bit off the bed, while one person switches the blankets out quickly. When she was on ECMO it was alot harder to do this than now so we didnt get to help. Yesterday Jamie asked if I wanted to help and I was able to put one hand under her head and one under her  and help lift her a few inches!! It doesn't sound like alot but it so amazing to have both my hands on her, to feel her soft little skin on mine. I am so glad I was there.
I have more I want to write about but will later since ive been trying to publish this post for almost 24 hours!

Mommy and Dadd

Mommy and Daddy and Grace.

This is how crowded we were with ECMO!

Sweet baby feet

We played dress up one morning:)

Boring Night

Today Grace's team said the plan for her was to have a boring night. Dr's orders! I sure hope that's what she's having!
Monday morning Grace had been desatting for over an hour, but it wasn't anywhere near as low as it had went on Sunday morning. But they were down into the 70s consistently and they went up on her vent settings and gave her more sedation and they were still desatting. Even though they weren't extremely low it was so upsetting because she needs to keep her sats up on the vent, we no longer have ECMO to live for her.
Someone asked how she did if she was hand bagged, which she hadn't really been much. So they said why not try it and see what happens? So the RT (respiratory therapist) who I really like, Delaney, started on it. Grace was fine. Her oxygen went back up into the high 80's and a few times hit into the 90's. Still not 100 but much much better than what the oscillator was giving her. When Grace was put on the oscillator she was not extremely sedated and she got really upset. I really think it scared her. I know she's sick and I know that she's not a "normal" newborn but she is still a full term, 3 week old baby. she still can get scared. And the reason why she was put on so many drips and  PRN's to keep her paralyzed was because she could not wake up on the oscillator without raising her blood pressure and dropping her sats. I always thought she simply hated the oscillator and was freaking out. Well someone else (I had slept in the waiting room for about 3 hours the night before so I am not sure who even decided it) made that connection as well and said "she doesnt like the oscillator" and they got her a conventional vent and she's been on that since Monday around 6 am! She is still on Nitric but is doing well. Her settings are pretty high still and do need to come down but they have weaned a bit today and she has tolerated it.
She is having a somewhat hard time with her temperatures. She keeps getting hot and then cold. they aren't sure if she's developing an infection or what is going on. She has been on an antibiotic since she got there though, so the likelyhood is low. I think it's because she hasnt had to do it herself in 3 weeks, ECMO did it for her and she's not used to it.
She is still paralyzed, hopefully she can start waking up more tomorrow the next day. I love seeing her beautiful eyes, even if it's just for a few minutes.
This weekedn was really hard, it was hard to see the light it was hard to not think the worst was happening. We were told as soon as we got to Mott that there would be ups and downs and to expect them but I never ever imagined that the downs could be so incredibly down and hard. And that the ups would be so small, but so big at the same time, if that makes any sense. But when I think that last week she was completely supported by ECMO and this week she is not, well that is a step in the right direction. Even though she still has quite awhile on the vent, she's just on a vent and not a vent and ECMO. It's baby steps and I have got to realize that and take it for what it is. I think I have alot of trouble with it, because 24 days ago I had never even heard of CDH, I never knew such a horrid defect existed. Let alone what it entailed. When she was born they said "oh they see this often and fix it no problem" and then the first dr who talked ot us at mott said that CDH babies go home anywhere between a few weeks or a few months and that he thought we could expect weeks not months. So to know that we've been here weeks and we have MONTHS to go, is hard since we never expected any of this.
 Adam and I are both having a hard time lately because Grace is the only baby in her room who cannot be held and who cannot be awake and who cannot be touched even sometimes. She is the only one who cannot interact, the only one who is not fed breastmilk or formula, even if just from a tube. It is really hard to see all the other babies making progress but her's isnt so drastic. Well none of those babies have CDH so it's not the same. It's just very painful right now. We would give anything for her to have her eyes open and to hold her. Oh to hold her would be the most amazing thing in the world. but we can't and everyone else can but they don't even come visit! So many things we don't understand right now. And we probably never will.
So please pray that Grace has a boring night, that we could not see the other babies and feel upset. Pray that Grace can start waking up more in the coming days and that we might be able to start talking about getting her chest tubes out and her intestines put back inside. She has a long long road ahead of her but she is so tough, she is such a fighter. Nobody works with her without commenting on her sass and spunk! She's an amazing girl for sure.

update

After I posted this morning, Grace remained pretty stable for a few hours. But then around 3 she started to drop her oxygen sats and raise her blood pressure. It stayed that way for about 2 hours. They track two numbers for oxygen, one is a preductal flow and one is postductal flow. They are supposed to be the same or as close together as possible to measure the pulmonary hypertension. They are both supposed to be 100 or close to it. This morning they had dropped into the 30s and around 3 they dropped inoto the 70s low 80s. They were able to get her stable again with sedation.
Her nurse gave her some eye ointment to keep her from getting scratched corneas and when she did that, Grace's blood pressure went up to 106/158 which is way too high. Right now it's 71/141 much closer to what it needs to be. Anytime she gets upset she raises her pressure and drops sher sats. her vent settings are very high still. Pray that she can stay calm and that her pulmonary hypertension can resolve itself. Its a really huge hurdle that needs to be overcome, its going to be a struggle. right now she is stable but its also very late and quiet and shes very sedated. Pray that she can come down on her vent and nitric and keep her numbers where they need to be and that she can wake up and not freak out. Pray that she overcomes this soon. Pray that her drs and nurses would be able to provide wonderful care with wisdom. Pray for Adam as he goes back to work tomorrow, he is having a hard time with going but it's necessary to work to have a hosue to bring Grace home to! Pray for the boys sicne they are still having a hard time, they don't really understand why this is happening. Please continue to pray for her healing that she would turn a corner overnight and be so much better tomorrow.
she is such and amazing little girl and she is so so strong and such a fighter. She is going to giver her brothers a run for thier money for sure!

The Rollercoaster

Well I said it myself. What a difference a day or a few hours make. Many many prayers needed for Grace this morning. Adam called me and said I needed to get here. Grace has been desatting alot, that means she's not getting enough oxygen. her blood gasses have not been what theyve wanted and theve had to up her vent settings. she is now on 80 ppm of nitric instead of her 20, which had even weaned to 15. There has been mention of putting her back on ECMO, Adam said. Please pray our little girl can pull through this as well. She is on a paralytic (pav) drip now as well, so she cannot wake up. Pray for the upswing to come back, for wisdom for her dr's that they would make the right decisons for her. That those decisions don't lead them to ECMO.

No more ECMO Cannulas!

In the words of one of Grace's surgeons, "she is a rockstar"!!!!!!! She is doing so well! Yesterday Dr Molitor was going to remove Grace's cannulas, so they sent us all out of the room around 2. We came back about an hour later when they said they would be done and peeked through the window and none of the nurses had caps and masks on so we asked to go in and they let us. Well upon walking up to Grace's bedside we saw there were still cannulas in her neck. He said that they were probably being too cautious and they probably could have taken them out and all would have been ok but htye didnt want to because she had had a blood gas right before that they didn't like and they spent the last hour deciding what to do. So they decided to wait until today and they would do it. Ok we thought, better safe than sorry. Then 10 minutes later after consulting with another Dr, they decided to take them out!! It took awhile but they came out and she didnt loose any more blood than they were expecting and she tolerated it with alot of sedation! She has been pretty heavily sedated since then because they want her to rest and basically unless they paralyze her, that girl isnt resting. She really starts to act up! She is on the high frequency vent still and they are hoping to switch to a conventional vent on Monday. She is still on the Nitric and they had started to wean it down but then she had a blood gas that was a little off what they wanted so they stopped. They have been able to wean down her vent settings already as well. She is doing such a great job! I am continnually amazed through this the difference a day or even a few hours can make each way. We spent Thursday just a mess because of the talk that morning and Friday just proved wonderful.
The next steps are to come off the high frequency vent to conventional and getting those intestines back in. they will work on that next week. Hopefully those chest tubes come out soon too. As soon as those are out, she is all mine to hold!
Her kidneys seem to be doing well, they do not have any indication that she will need to be put on dialysis. Neuro came and talked with us about the findings on her brain, but we still wont know anything until she is totally off the vent. When they extubate is when they schedule the MRI, so we have a ways to go. But the Neurologist said that the part of the brain the ischemia is on, affects motor development, and asked how Grace is when she is not paralyzed. Grace will throw a fit like a "normal" (I hate using that word, I hate when she's talked about it's "CDH babies") newborn. She balls up her fists and swings her arms around and picks up her legs and kicks around. She moves her head from side to side when she is screaming (silently) too. EVen with ECMO cannulas in her neck she was moving her head. So because she does all that, and her eyes reacted to the light she is not really thinkkng that her motor development should be impacted at this point!
Lots of good news the last few days, keep praying! This little girl is such a fighter, such an amazing little lady.

Decannulating

Grace is being decannulated right now. They should be done soon, we hope to hear how it went soon. She is doing well on the oscillator and Nitric. Her blood gasses have been good and her vitals have been stable for the most part. She had her eyes open for her brothers today, they loved that. She is so amazingly wonderful. Often kids and thier parents will stop in to the NICU to say hi, and today there was a little boy who spent 81 days at Holden with CDH. He is now a healthy active 2 year old. It was just nice to see him and talk with his mom for a few minutes. I will try to update more later.

day 19 and off ecmo

Grace is no longer on ECMO, she still has the cannulas (really its cannulae) in case they need to go back on but she is not being supported by it any longer. It wasn't a move that was made because she was ready for it, it was a decision made because the risks of ECMO were beginning to outweigh the benefits of being on. she had more areas in her brain that they arent sure if its bleeding or not.She is on an oscillating ventilator, it works a different way than the traditional vent. she wasn't very well sedated when they started her on it and she got very upset because her whole body shakes on this vent. They are hoping to have her on this for a few days and then be able to tranistion to a traditonal ventilator.Grace is also on Nitric Oxide to help lower her blood pressure and relax her blood vessels,. Graces's issue is that she has alot of pulmonary hypertension, and she can oxygenate pretty well and actually always has but she cannot ventilate, she cannot rid her body of enough co2. So her blood becomes too acidic. So though her heart is very strong, her hernia was not huge, it was closed without needing a patch and they would have been able to fit all of her organs back into her abdomen (her being on ECMO was why they left her intestines in a silo, because with ECMO they didn't konw how much swelling she would have) her issue has always been severe pulmonary hypertension which makes her a much riskier case. The ECMO was supposed to help that, and though it did, it didnt get rid of it. So that's where we are. They have been happy with her blood gases so far since coming off ECMO. For her she is doing very well, she is doing better than they expected since her body wasn't really ready to come off ECMO. she still very much needs prayers. I know God has a plan for her and I know I can't change it, but my feverent prayer is taht His plan for her is in this world and our family and our home.
It has been a hard day because as soon as I got to the hospital today one of the surgeons started talking about coming off ECMO and the serious questions that nobody wants to think about and voice, that are too painful for me to type out and I KNOW that even if they see the worst, she can be fine. He can carry her through and she can overcome this, I KNOW it's true. I've read a few CDH babie's stories and there are some that sound so much like Grace's so far and they are beautiful healthy thriving children now, and I've seen my own cousin completely defy everything the doctors have said so I know it's possible but it is so so so hard to hear his words running through my head. Pray for Grace to continue to be strong and overrcome this, and for Adam and I to be strong enough for her, for our boys, they are having a hard time. Our little girl is such a strong little lady and she truly is amazing. She is so  small and has had such an impact on so many people already, I know she will continue to do so for many many years.

No news.

Not a whole lot to report today. Today was Grace's 17th day of life and 17th day on ECMO. They did not trial again today like planned. They want her kidneys to start to work on thier own again, so they wanted to give her a break today. As of right now the plan is to trial again tomorrow. Of course that can change, but I hope they do and that she rocks it. I mentioned her high tolerance to the drugs, well today when I came in, I found out they decided to stop giving the PRN's of morphine and Ativan and switched instead to Fentanyl and Versed. They are supposed to work better but now it's just more things to wean her from. Poor girl. Her silo popped off again, this time in a different place, so now she has more stitches in that. She had a pretty uneventful day, but got pretty upset a few times and has been moving her arms and legs and head when she cries. I hate it. Pray for her comfort, for quiet, for her kidneys and for her to come off of ECMO by Monday. Adam is going back to work on Monday and we would both just feel more comfortable if she was off ECMO when he goes back because we aren't going to be able to be there overnight anymore when he goes back and we won't be able to have someone there all the time when he goes back either.
The boys bought Grace a purple and pink unicorn mini pillow pet to put on the top of her isolette. They can't wait to see her more and hold her. Pray for them as well, they are doing such a good job considering how sudden and severe and different things have been for them. They are still having a hard time though, they just want her home and to hold her. They don't really understand completely why its taking so long.
Thank you so much for all the thoughts, prayers, kind words and acts that everyone has shown.

A trial of a trial..

Today Grace's team decided to do a trial of a trial off ECMO. We didn't know it was just a practice trial till right before, so sorry for everyone who I told that we were trialing! She did such a great job though. Usually they will trial for about 4 hours, but they just did an hour with Grace. Yes, she was off ECMO for an hour today! Between 1:10 and 2:10 pm she was stable on the vent and Nitrous Oxide! She was doing really good, but they didn't want to push her too far. Dr Ruzick (Ana) said she was only thinking they might get half an hour out of her if they were lucky and Grace could have kept going past the hour! She said that CDH babies often crash immediately the first time they trial and she didnt so they are very pleased with how it went and will try again tomorrow! It is such encouraging news because last week it felt like nobody thought she was going to be able to do this anytime soon! The only issues we had with trialing was that Grace seems to have a very high tolerance to drugs. She eats up morphine and ativan like crazy. They upped her limit to 200, when she first got to Mott they had started her on 60, and each day she seems to need more and more. So they gave her 2 doses each of them and she was still breathing very quickly over the vent and wiggling alot, but wasn't uncomfortable but they wanted her to stop breathing over the vent so they gave her a paralytic, which she STILL was able to stay awake through.
They will trial again on Weds. Grace had a hard time coming down from the meds though, she was very twitchy and shaky and just looked unhappy. Weaning her from all the drugs is going to be an ordeal. When they trial her again, they will just let her go as long as she can or for 4 hours and then they will cut the lines and let her be ECMO free! They will leave the cannulas in her neck for probably 48 hours, usually it's 24 but for Grace they are going to leave them in for 48. They leave them in in case they need to go back on ECMO (I sure hope not) so that they don't have to recannulate her which would be hard to do since they tie off her carotid when they decannulate.  So please pray that miss Grace can be free of ECMO today and her lungs will continue to do the work they need to! Please also pray that her kidneys have not been affected while she was on ECMO, they are not "worried" they say but it is a concern that they might not function the way they should. She did have some urine output yesterday after not having any for a few days so that is promising.

April 11 Some good news.

I haven't seen Grace today, I had to come home with the boys for the night. Today is Day 15 of Miss Grace's life. Day 15 on ECMO. Adam just called me and said that she had an uneventful night and that Grace was awake for the whole time they changed her diaper, messed with her silo, changed her position and did all thier assesments and she didnt raise her blood presure or drop her sats the whole time and didnt grimmace at all and they didnt push anymore morphine while they were doing that. Good things since she can't really remain on Ativan and Morphine forever and will have to cope with things without thier help. He also said that, the surgeons do think she will be able to come off ECMO this week, since her lungs are doing a little and since last week when she crashed, she was able to stay alive with the osscillating ventilator, so if they need to take her from ECMO to the oscillator then on to the regular vent they can. Her ECHO today showed that she does still have some pulmonary hypertension that being on ECMO has not been able to resolve but that they can treat with medication. They are going to keep trying to get her volumes up and they are going to try to clear her lungs a bit more.
Grace is just so amazing, 2 weeks old and she has been through so so much already. Continue to pray for her healing, for her to be comfortable and keep moving forward.
Today I was sitting on the 4 season porch with the boys, and even though it was kind of dark and rainy this morning, there were 2 bunnies just running and playing out back, going between our house and the neighbors and we were watching them. Grace and daddy were missing and I found myself just thinking that I couldn't wait until she could watch the bunnies out of the windows, she will love it I know. I was just sitting there thinking about how everything we've done with the house since we bought it in December, was with the boys and her in mind. How the furniture I was sitting on was bought with spring and summer and watching the boys play out back and how Grace would have somewhere to sit away from the sun and I'd have somewhere to sit comfortably and nurse her and not have to have the boys come inside, and how none of that is going how we had planned. But I didn't even get upset like I would have last week or even 2 days ago because even though I had so many ideas of how our lives were going to be with her and the boys and how awesome things would be, and how great it was going to be to have a sweet little girl and my 3 adventurous boys and all the thoughts of the things we could do, that's not all lost now. Not at all. It's all still here just in a different way. I still have 3 adventurous wonderful boys, I still have a very sweet little girl. Even though I am missing all the awesome moments of having a newborn and Im missing things my boys are doing, I am not MISSING OUT. Things are just amazing in different ways and though I can't expiereince all the things I was looking forward to with a baby and with the boys,I will expierience great things with them all together later. I ordered the book One Thousand Gifts about a month before Grace was due and have been trying to read it since I got it but was so busy that I never read more than the fisrt page. Since Grace is just sleeping alot, I've been able to start reading it and I wonder if I just wasn't supposed to read it before she was born and that's why I never picked it up till she was at Mott. There's a line that I just couldn't move on from. I read it over and over again and keep tyring to remind myself of it.
"It is suffering that has the realest possibility to bear down and deliver grace. And grace that chooses to bear the cross of suffering OVERCOMES that suffering."

I think this was about day 7?

Two brothers holding her hand.

Day 13

Dr's and illness are often frustrating things. I am finding myself frustrated and upset and somuch more right now. I'm frustrated with how we are told one thing, and then later it's not the same. I'm not a dr, just a mom so alot of things might be a little lost on me. When we first got here, we were told her right lung was pretty close to a normal size, and that she does have a left lung but it was very under developed. To me that sounded somewhat promising. I also believed that since we didnt even know she was sick, and I held her for a good 5 minutes (which isnt terribly long, but if you can't breathe I think it's a pretty good stretch) and then they checked her out for awhile, and she wasnt on a breathing tube or vent for a good hour and she survived that that should be good things. Well today they said that even though her right lung is a good size, it's not a "normal" lung and that they didnt see much left lung. And that it doesnt really matter how big the right side is, it matters how well it will function. I was under the impression that her right lung was good, I don't know if I just missed it at some point or if I chose not to hear or believe or if Im just that naieve but I thought her right lung wasn't really a concern, and that even if her left lung was barely there, you can live with just the one. You can live with one, but it has to be "normal". I KNOW that truly they can say all this and that they can have all their statistics and all thier numbers and comparrisons and all their science and none of it can matter, I know she can make it and God can bring her through and all can be just fine but it is so difficult to hear that perhaps it's not nearly as promising as you had thought.
I'm also upset and frustrated that yesterday when they bronched her they said she did fine. Right before they did it, I was holding her hand and she was squeezing it and then they turned the lights up and she squeezed and closed her eyes more tightly, and I said I didn't think she was completely paralyzed and they assured me that she was going to be comfortable and that she was not going to feel anything and not be stressed and not be uncomfortable at all. Well this morning during the nurses shift change, the night nurse was telling the day nurse about her Atavan and morphine and how they have basically been pushing it regularly and if you don't stay on top of it, she is going to be very unhappy and that during her bronch and chest tube yesterday she was very unhappy and they had a very hard time keeping her calm. That was so upsetting to hear, because when she is "unhappy" her face is crying, but she isnt making any noise and isnt having tears, she just has this silent scream going on and it is the hardest thing to see, and not be able to do anything about. I am perhaps just a little overzealous with my kids, when one of my babies cries, they don't cry for long at all. You cry, you get picked up, changed, cuddled, nursed, comforted and I can't do anything at all but hold her hand and talk to her.
She does have some good things going on today, her chest is clearing of fluid and she is not requiring blood like she was and she is responding the way they would have liked from the chest tube. Please pray that her lungs begin to function and that she can come off ECMO and begin to move forward.
Alot of friends and family have said they know someone, or konw someone who knows someone that has CDH or a child with CDH and have asked if I minded my contact being given out. Our lives became a completely open book on March 27th, so please by all means direct them here, or facebook or let them call or text, or email. I don't care, I would imagine any encouragment would be a good thing. Also, if youve called or texted or emailed or facebooked and havent recieved a response, please just konw we are not purposeful with not responding and that every kind word and gesture we have recieved was not lost, we have appreciated everyone's amazing kindness. we are overwhealmed with the amount of love and care that has been shown. Please continue to pray for our sweet sweet Grace.

Day 12

Grace had her right chest tube placed today and they looked down her throat with the camera to see if they could see anything that was blocking her lungs from opening. She did very well for the chest tube and bronch, and they have drained quite a bit of fluid from around her right lung already. They did not see thick secretions like they thought they might, so they know taht that is not an issue right now. After the fluid came out, she started having some small volumes in her lungs, hopefully they continue to get better and we can start trialing off ECMO and coming off for good. It's day 12 for ECMO as well. She rested most of the rest of the day, opening her eyes momentarialy and sticking her tongue out when they repositioned her. I wonder if she will do that at home. Tomorrow they will start to condtion her lungs more, and try to get them working. They want to give her the time she needs and not push her, but at the same time, she needs to be getting a move on with getting off ECMO. She's back down to close to her birth weight so that's good that so much fluid has been taken off. So her day was pretty good, even though she had to get the chest tube and bronch, she was still doing really good.

Day 12

I suppose it should say day 11 since day 12 has just begun. Nevertheless. Grace has had a few quiet days, which is good I have to remind myself that it's good. She's been very stable. She went 24 hours without requireing any blood product at all and then when she got some, it was only platelets. She was awake for quite a few hours yesterday and all her vitals stayed where they should, which is so good since she was getting so stressed out before when there was noise or she was awake. I missed it because I had to be home with the boys but Adam said she was awake for 2 hours straight and they didnt have to give her a boost of drugs to calm her down that whole time. He texted me about doing mouth care with Colostrum but I don't know if he actually did or not. 
Grace still has alot of fluid around her lungs, they are removing fluid like crazy from her little body, each day she is loosing a little weight, she was down to 9 lbs yesterday, I'm not sure what the heaviest she was. She was 7#4oz at birth and with being on the ECMO she balooned quite a bit. At the time I didnt think she looked all that big, probably because Iain was 9#11 oz at birth and Isaac 9#5 oz so she must have just looked like a normal sized baby to us:) But looking at the pictures from last week, she was huge! So they've seen alot of fluid around her right lung and they were hoping that with putting the kidney on the ECMO circuit they could get that to leave but it's not really going anywhere. So they will likely place a chest tube on her right side as well today. I know they need to get it out, I know it needs to be drained but it's things like that that get me discouraged. At this point I thought we'd be starting to take things out, but we just keep adding more and more to her.  I know we just have to be positve though.
We put a family picture above her head on her incubator top and she was staring at it while she was awake. Studying the family who is so anxious for her to come home and join them! She didnt like taking her eyes off it. She sticks her toungue out alot, it's really cute, the nurses say she sticks it out when she's mad! She must have learned that from her brothers.
Keep the prayers coming, pray that Grace's lungs start working the way they need to, that she can come of ECMO in the next week, since Sunday will be the start of week 3 on ECMO which is really long. Pray that our boys continue to do well with this craziness, they are each having a hard time but are handling it pretty well most of the time. Pray for strength for Adam and I and please pray for Grace to be comfortable and strong and for her to just pull through all these struggles and get them behind us. I know the Lord is using her for a great purpose, I know His plan for her must be grand. She is the most precious baby I've ever seen, she just oozes sweetness even though there's not much she can do. She is "full of spunk" as one of the nurses told me. I can't wait until she is just running around driving me crazy:)

Day 10

Grace is 10 days old. I can hardly believe it's already been ten days but at the same time I can't believe it's ONLY been 10 days. It's such a strange feeling. She had a good day today, when I left around 11pm they said she was "very stable". She was resting nicely, and the last blood gas they drew was so nice they decided not to draw another until the morning. She has an awesome nurse tonight so that's good too. Grace was awake for just a bit today, she is so beautiful especially when her eyes are open! She really likes to be touched by mommy and daddy, but is just a bit annoyed by most others. Like I mentioned before, the noises really bother her, so they've been keeping her quite sedated because she doesn't like to be bothered. Weaning her from Moriphine and Adavan probably won't be too much fun.  Her brothers came to see her today and she liked that alot. She had her eyes open then and I think that made them pretty happy too.
Grace started showing some lung volume on the vent, let's hope her lung function begins to improve further and her lungs clear out all the fluid and wetness so that she can begin the steps to trialing off of ECMO. The ECMO specialists are all great people, but I can't wait to see them go!
I have to keep telling myself that it's going to take awhile, that baby steps are ok, that she is going to get through this even if it takes awhile, that I can't expect it to happen overnight. BUT that's really hard. The first 2 or so days that we were here, they were saying we'd be there for 3 weeks to a month and that ECMO should be about 12 days. Well since we are entering day 11 on ECMO we know that's not happening, which means the month thing isnt happening either and it's so hard for me to not get discouraged.
So all in all, not much to report today, which is thankfully a good thing!

The scariest moments.

This is Adam, Grace's father. Miranda has been at home with the older boys the last few nights, so I will be doing the update. On Monday evening a large clot of blood that had been building up in the lines of Grace's ECMO (Heart Lung Bypass) machine dislodged itself and began to travel through the machine. It stopped in the artificial lung and immediately shut down the machine and caused Grace to be off of support. I was in the room visiting when this happened. The room turned into a frenzy so fast that it is a blur to me now. They immediately called for her to be placed on an oscillating ventilator and soon thereafter they started using chest compressions to keep her alive. A new artificial lung was brought in to replace the clotted one, but it also clotted, almost immediately, and they required a third one. A third lung was not ready however so Grace had to be kept off of her heart lung bypass for roughly 20 minutes. The doctors allowed me to stay in the room, but due to the large number of people at her bedside, I could not even see how she looked. Eventually the third lung was installed and Grace began to slowly start to receive ECMO support again. She did however prohibit flow slightly so they looked at her heart with an ECHO and discovered that the cannulas (tubes that go into her neck from the ECMO machine, into her heart to deliver blood flow), had shifted and was now impeded by a portion of her heart. So Grace underwent a third surgical procedure to move the cannula, and restitch it into place. The surgeon had to reopen her neck incision to do the cannula manipulation. After the cannula was repaired Grace was back on full ECMO and was able to stabilize eventually. Yesterdays adventure rocked the foundations of my soul. I have never before in my life, experienced emotions like the ones I felt yesterday when I though that I was going to lose my sweet baby Grace, right there in front of my eyes. I thank God, and am eternally grateful to Him, for bringing her through this. In the midst of all this chaos though, Graces right lung, her good one, was able to inflate slightly from the pressure of the ventilator. So in my weakest and darkest moment, God performed a miracle, and gave me hope to guide me through. Yesterday was a day like I have never known. Grace has now recovered and looks great! Her lung volumes are improving, and she opened her eyes and stared at mom and dad yesterday while we held her sweet little hand. As a result of the confusion of Monday night, the surgeons decided to change out her ECMO machine with a fresh one, and try to prevent a reoccurence. After the changeout it was decided that she should go on a type of dialysis to try and help her kidney's and prevent any damage to those. There was also a good deal of clotting in the bag that is containing her intestines while her body makes room for them. So the surgeon had to remove the bag and clean out the clotting. Miranda and I were both able to stay for this procedure, as it was done bedside. During the procedure I witnessed my sweet little girls stomach contents, laying on a surgical cloth, with a pesons hands inside of her stomach. A quite peculiar situation for a person like my self, who is not very exposed to the medical world.  I am heading up to see her now, but more will follow.

surgery update

Grace is out of surgery and they say she is good! She's not back in the NICU yet so we havent seen her but they said her chest was filled with clot and they really are glad they did it! Hopefully this will give her lungs room to open and start the process of getting off ECMO!!! Thank you for all the thoughts and prayers and keep them coming!

Surgery

Grace is scheduled for surgery at 9 am tomorrow. They need to remove a clot from her left chest cavity. Hopefully it will allow for that lung to have room to  grow. She had a very good day today, her oxygen hardly dropped at all and her blood pressure didnt raise. Her heartrate stayed fine, it usually does, she has a strong heart. They have to change the ECMO tubing after one week, so they did that today which meant she was off of it for about 50 seconds. Doesnt sound like alot but was scary to me since everything dropped from that. It all went back up quickly though. I will post more tomorrow, going to get some rest so we can be strong for Grace tomorrow for surgery. Please pray and think of her around 9 am!

Day 8

Today Grace is a whole week old.IT's 5 am Sunday April 3. A week ago I was sitting in at Flower Hospital while Grace was being prepared for transport at Toledo Hospital to U of M. In some ways I'd like to go back to last week. This was all less real then. I still did not have any concept of what her having  CDH really meant. Now the concept is overwhealming and I'm not sure I am handling it ok. I want my baby girl to be healthy, I want her to be in my arms and nursing and I want her brothers to be able to see her. I want my family to be whole and happy and not broken up and sad. I hope this comes soon.
Grace has had some more rough times. When we got to the hospital yesterday morning, we found out that a few hours earlier she had strarted bleeding from her chest tube. The bleeding really picked up and the NICU went crazy, we were asked away from her so they could figure it out. They don't know where it is coming from but were able to stop it for now with upping all her "product". ie different types of medicine. They need to figure out if maybe it's just all old blood that has been slowly pooling for a week and found it's way out or if its new blood, in which case they will have to open her back up to find out. Opening her up is a huge huge risk. She is still on ECMO and so her blood is being thinned by heparin and transporting her and the ECMO machine to OR is very risky. I didnt get a call overnight so I am hoping, praying this means she is back on the upswing. I love this baby so much, need her and want her more than I ever could imagine. Please pray for her to be healed. Pray for me to find my strength, any I thought I had has escaped me. 
Her cranial ultrasound showed no growth to the area of ischemia which is a good thing, they don't think it's likely that it's a bleed but rather just an area that didnt get alot of oxygen. Pray it's not going to affect her much.
The boys are having a hard time, I know they are being well taken care of, and I know that they are having fun and being given things to do but I can hear when I talk to them how sad they are and it's so so hard. I tired to be with them and with her and it's just too hard but it's too hard to be without her or them. I just dont know how to divide my time  and love.
Going to head to the hospital, I really hope there's some good news. Thanks all so much for the thoughts and prayers, they mean alot and we really could use any and all you've got.

Well Grace was doing very well and they were talking about starting to Trial her off the ECMO, starting Thursday. Well it turns out she's not having any title volumes in her lungs so she is not ready. She is not filling them on her own yet more or less I think is the general idea there. So they are waiting and letting her rest more. They will hopefully begin at the beginning of the week, but if she isnt filling them they will up her vent and try some other things. Pray that she begins to use them. Hopfully after some rest this weekend she can. She gets herself very worked up, coughing to try to get her tubes out and looking around and trying to act like a normal newborn. When people touch and talk to her too much she gets too excited and then has to be sedated again because she is just working too hard on getting out of here! We are going to reduce her stimulation and see if it helps.
 Dr Molitor came in and talked with us yesterday about a concern of theirs and it was pretty upsetting. Grace has a cranial ultrasound done every other day to make sure she does not develop a brain bleed from the ECMO and all the blood thinners that she is on. She does not have a bleed but rather they have found a small area of her brain where she somehow did not recieve enough oxygen to. They don't really know at all what this means for her because ultrasound is not able to diagnose something like that, she will need an MRI, which she is not stable enough for. When she is off ECMO she will get one. Pray that it's small and on an area of the brain that is just not going to matter much. Her nurse made me feel alot better about it than I was at first. She said it wont set back when she goes home at all, it will just depend on how it affects her when she is there. 
She told me as soon as Grace is off ECMO we can hold her, and if I want to sit and hold her 24/7 then I will sit and hold her 24/7. I can't wait. I want that sweet girl in my arms so much. She is so wonderful she likes to hold our hands and have them up by her face. She likes to suck a pacifier as best as she can too
Giving her my colostrum has stopped for the time being, since its so exciting for her. She really likes it alot htough so that makes me really happy and gives me hope for nursing her one day. Pray she does not become a poor feeder. (She's a Hall and a Fisher, she has to like to eat! ha!)
Pray for our boys to not be having too hard of a time without us. And pray for rest for Grace. She gets very annoyed by the sounds of the NICU. There are two babies by her that just cry ALOT. They can't help it, one is sick and one doesnt get alot of attention. BUT they agitate her, the door closing agitates her since she right by it.
Over all though her nurse Jennifer, who will be one of her constant care nurses says that she is doing nothing that they would NOT expect. She said so far she is going on a "normal" course for CDH.