Balloon Release!

Tonight's Balloon Release was amazing. Thanks to everyone who participated. There were releases in Nashville, TN- Sturgis, KY-Frankfort, KY- Louisville, KY- Pawhuska, OK- and some CDH families in Cleveland and California also released balloons. We had about 50 people at the balloon release in Nashville and about 30 at the one in Sturgis. This is a testament to how many lives Maxton touched! At the one in Nashville a stranger came up to see what was going on, so I shared Max's story with her and educated her on CDH. :-) We released 18 turquoise balloons with Maxton's name on them for the 18 days he was here with us. We also released some nice white balloons for all the other CDH babies, both heavenly and earthly. My friend Racheal took a bunch of pictures that hopefully I will get into a slide show, but for now here are few!

Today Maxton would have been 4 weeks old. It's crazy to think that just 4 weeks ago I was at the hospital about to have a baby and now it has been 10 days since he has been gone. He is certainly missed by many and I know he will never be forgotten!

CDH Awareness Day!

Please remember to wear turquoise tomorrow in memory of Maxton and all other CDH babies! Please also tell someone new about CDH to make more people aware! If you are in Nashville please attend Max's balloon release. Hopefully it won't rain! We are having it at Centennial Park (main parking lot in front of parthenon) at 6pm. There will also be several other balloon releases around. Please take pictures and send them to me!!! :-)

By the way, we are still doing well. I know people keep asking, so I thought I would throw that out there. Thanks for praying for peace for us!

One Week

I sit here alone for the first time since Maxton passed. I cannot believe tonight it will have been a week. In some ways it seems like yesterday and in some it seems like a lifetime ago. I wonder, was I ever even pregnant? Was this all a bad dream? Like Marion said, I have the battle scars of pregnancy with no baby to hold. This time last week I was very concerned over my baby and was so fearful that he would pass away, and just a few hours from then that became a reality. I am now a childless mother. Every time someone asks, 'Do you have children?', the question will be bittersweet and the answer will probably make them feel sorry for me, or sorry for asking. I don't want people to feel sorry for me. I just want them to learn. To learn to love. To learn to hope. To learn to be a better person. Those are just a few of the things I have learned from this journey. I will always have Maxton in my heart.

Shockingly, I have not been sitting around wondering "why?" I know that Maxton was sent to me for a purpose that he fulfilled. What I don't exactly understand is why he had to be taken. I'm not sure why he couldn't have stayed here and still fulfilled his purpose. One day, I am confident, I will be able to ask God this question, and until then, I have a certain peace about it. A peace that I am sure will grow over the next few days, months, and years. I know my Maxton was loved by multiple people while on this Earth and I know that his death, though untimely, was not in vain. I am forever grateful for you all reading this and sharing it with your friends. I find comfort in knowing that Maxton was able to touch multiple lives, the lives of friends, the lives of strangers. It may sound odd, but it makes me find hope in his death. I am hopeful that those who read this will love their children or family that much more. They won't take as many things for granted. I know that when God decides to bless us with another child, we will certainly be better parents because of Maxton. I cannot say this enough, but Maxton has forever changed my life, my husbands life, and our marriage.

I feel as though I have to mention my CDH friends in this. These women are the most amazing women I know. Regardless of individual outcomes, the women I met through this journey are so strong and inspirational. I have made some forever friends and I am grateful to God for that, as well. I think that God chooses us mothers for a reason. I don't think I am any stronger than any of them. I plan to be a part of this community of love and support for the rest of my life.

Having said all of this, I miss my baby. I wish I was holding him now, or watching him take a nap, or even visiting him at Vanderbilt. I suppose I will always miss him. We had a very nice service for him. Thanks to PJ, my pastor, for making it extra special. It is so surreal to be here... in this place.. somewhere I never thought life would bring me. I see that I am starting to ramble so I will leave you all for now. I intend to continue to post here as it is very therapeutic for me. Read at your own will, as it may make you sad depending on my mood.

Balloon Release

I just wanted to let everyone know that we continue to appreciate your thoughts. We has received so many kinds words and gifts, as well as hearing of some nice donations made to CDH foundations. We know that Maxton's life was not in vain and I have found so much comfort in that. I can tell that people are praying for peace for me because I definately feel it. I desperately wish that my baby was here with me but understand that God needed him there.

As for the balloon release, it will be next Tuesday, March 31st at 6pm at Centennial Park in Nashville, TN. We plan to celebrate Maxton's life and the lives of other CDH angels (both heavenly and earthly). Regardless of whether you are able to make it to the balloon release or not, please wear turquoise in rememberance of Maxton and all the other CDH babies. CDH affects roughly 1600-1800 families per year, and half of those do not survive. We are certainly not the only ones who are grieving for our child. As always, thank you for checking on us and praying for us.

Arrangements

We have decided to have Maxton's final resting place in Kentucky. Partially because we hope to move there one day, and partially because it is so much more peaceful than the city.

Visitation
Wednesday March 25th
4-6pm
Whitsell Funeral Home
609 N Main St.
Sturgis, KY

Funeral Service
Thursday March 26th
2pm
Henshaw Christian Church
237 Chapel Hill Rd.
Morganfield (Henshaw), KY

We will also be planning a memorial service here in Nashville for Maxton. It will take place on March 31st and will serve to remember Maxton with a balloon release. We will also hope to raise CDH awareness on this day due to it being CDH awareness day. I am not sure of the time or place yet (if anyone has a location suggestion let me know, I am thinking some park maybe?)Please wear turquoise in rememberance of Maxton on the 31st for CDH awareness. We continue to appreciate everyone during this difficult time.

If anyone would like to do anything in memory of Maxton, we request that you consider donating to a CDH foundation in his name. The following organizations all help families within the CDH community:

Parker Reese Foundation
P. O. Box 2199
Elizabethtown, NC 28337
Jessica Singletary at (888) PRF-CDH0
http://www.theparkerreesefoundation.com/

Breath of Hope, Inc.
PO Box 6627
Charlottesville, VA 22906
Elizabeth Doyle-Propst at (888) 264-2340
http://www.cdhawareness.com/

Global CDH
P.O. Box 209
Hasbrouck Heights, NJ 07604
(201)984-5830
http://www.globalcdh.org/

CHERUBS
3650 Rogers Rd, #290
Wake Forest, NC 27587
(919)610-0129
http://www.cdhsupport.org/

Our sweet angel baby

After 18 days on this beautiful earth, our sweet baby earned his angel wings tonight at 11:56 while David and I held him. They had done everything they could for him throughout the day, but he was not responding and David and I made the gut-wrenching decision to allow Maxton to go to heaven and be with God. I am completely heartbroken over this but we had to put Maxton before ourselves and he had just fought so hard he wasn't able to fight the newest battle. We had prayed that God would let us know when it was time and about 1 mintue later there was a knock at our door to discuss the day. We knew our little warrior was not able to win the battle. We are currently considering arrangements and will be sure to post them. We want to thank everyone for praying for our son. I know that he has touched many people and has accomplished so much in the past 18 days. I know I have said this before, but I cannot begin to describe how much Maxton's life has meant to me and my husband. We will never be the same people and have been changed for the better. We could have only hoped to share this with Maxton while here on earth, but know that we will be able to hold his beautiful little soul again in heaven. Thanks so much for praying for us.

Silo

So Maxton now has a silo. Plan A did not work and things got very bad, very quick. While waiting for surgery to come up to Maxton he coded- his heart stopped and he quit breathing. Luckily, the surgeon arrived as this was happening and opened his incision and after 10 minutes of chest compresions, his heart restarted. All of this happened in a matter of about 30 minutes. His heart is now beating but his oxygen is not too good. For a while it was running in the 50s-60s ( and for a brief time much lower than that), which is why they decided to do the silo. Max is very purple, but is starting to regain some of his color. The next few hours are very critical, as he has alot of acid in his system. His level should be less than 1 and it is at 14. There is risk that this could poison him, but they are giving him a lot of fluid to hopefully combat this. There is also risk that he could desat again or his heart could stop again. Right now his oxygen is in the low 80s pre and the 70s post. They think after a few hours the numbers should be getting closer to each other. I am holding it together as best I can. My little man has been through so much but he is clearly not ready to leave us just yet. I am praying that God has plans for him that involve and nice long life with his loving parents. David and I are staying at the hospital tonight to be near him in case he has another bad episode. We appreciate everyones prayers and know that this what has kept Maxton alive. Every time I see him I remind of everyone praying for him and how much love people are sending our way.

The plan

As we speak they are switching Maxton from the high oscillating vent to the jet. Due to the bleed and the swelling, Maxton's tummy area is now pushing on his diaphragm, which is pushing on his lungs. His sats have dropped off dramatically this last couple hours to about 60 right now. The good thing is that his pressure is now up and staying up which makes them think the bleed has likely stopped. His heart rate is also in the 140s-150s. Hopefully the switch to the jet will help his oxygenation improve.

Plan B- If the oxygen doesn't improve then they will open his incision from yesterday, look around for the bleed and try to fix it, and then put a silo on. This would be a bag on the outside of his body to hold his intestines, which would remove some of the swelling volume and let his lungs expand more.

Plan C- If neither of these works then ECMO may be used.

Please pray that the doctors are able to stabilize our little man soon. We are so very concerned about this. We knew that he would likely be sicker after the surgery, but were hoping for the best and may have tricked ourselves into thinking he was going to do great. Today has been especially tough and it seems like it is only just starting.

Ashley and David and sweet baby Maxton

Bleeding

Maxton did great overnight but when I got here this morning they had just had a bad blood gas. Apparently his blood volume has dropped and he has some internal bleeding. They are trying to figure out where, but have not been able to as of yet- though the think it is likely in the abdomen. He is tolerating the bleed well, but that could change at any minute. Right now they are going to start giving him quite a bit of blood products to get his pressures back up (they are in the mid 40s) and hopefully get his heart rate down- it is in the high 170s-low 180s. The fellow told me that if the bleed is in the abdomen it should swell and the bleeding should stop if it gets to the point where the abdomen is too swollen. Please pray for my little man today as I cannot imagine losing him.

Little Man

Maxton is still looking pretty good. He is obviously pretty swollen, right now mostly concentrated to his abdomen. They have been weaning his oxygen tonight and he is down to 73 (or was when I left). They will continue to wean throughout the night if Max's blood gases look okay. So far they have looked good and improved throughout the day today. By no means does this mean he is "out of the woods" but I am definately encouraged that they are able to wean some things. They have been giving him blood products because he is draining quite a bit through his chest tube and because he lost some during surgery. However, I think they are planning to stop/slow down because he blood pressure is getting a little too high. They are trying to keep it above 50 due to the potential for his pulmonary hypertension to worsen after the surgery. When I left it was running in the low 70s. I think they would prefer it to be in the mid-low 60s or high 50s. His heart rate was in the 130-140s. He was satting 100-100. His delta p was at 33-34 and his MAP was at 14.0. I am praying that he can keep this up for the next couple of days. I am so inspired by him and can't wait to scoop him up and giving him little kisses! Thanks for checking in on us.

Warrior Scar

Little Maxton now has his very own warrior scar. Surgery got underway around 10am. At about 11:30, the RN came out to tell us things were going well and they were in the process of finishing with the patch, then they would be closing up and coming to get us. So, about 12:40, they came out. ( I was a nervous wreck that last hour wondering what was taking sooo long!). Maxton's defect was "large". I asked the surgeon what organs were up and he kept saying "all of them". I plan to get more clarification on this, but regardless, they are all back down now. :-) He could not sew Maxton completely up, due to skin not stretching enough to allow a complete close. (basically since there hadn't been any organs in his tummy area, it was pretty small) His outer layer of skin is sewn up, but the more muscley skin underneath is still open... so Maxton now just has a real hernia (like what most people think of when they hear hernia). This will have to be fixed at some point, but not to be worried about for right now. He apparently did good during the surgery. The fellow (one of his doctors) told us that he did better than they expected. His oxygen is obviously back up to 100% and his nitric is at 19. His delta P is set at 29 and his MAP is at either 14.5 or 15 (it was fluctuating so I couldn't tell and didn't wanna ask while they were still cleaning up). He looks really good. His is swollen, but looks like a new man! The goal today is to keep his blood pressure mean above 50 and to keep him satting well. They are just going to let him rest right now. The only drips (other than food and stuff) that he is on is still the morphine and the versed. I anticipate that they will start a blood pressure med later today but it is good that they haven't yet. He mean was like 49-50 when I was back there. I think they were trying to give him a little time to see if he would get it up on his own during recovery. Obviously, the next 48-72 hours are critical. I am hopeful that Maxton will not decompensate (alot of CDH babies do). Please keep us in your thoughts. I cannot even begin to describe how greatful and thankful we are! We truly appreciate each and everyone of you..

Tomorrow and Pretty peepers!

I just wanted to let everyone know that the surgery is expected to take about an hour half. We are looking at like an hour prep time because they are moving the OR to the NICU. Then, the surgery, then about 1-2 hours of clean up/stabilization. I figure that I won't know much until like 2 or 3. I know the surgeons are supposed to let us know how it went, but I may not update the blog until I know that he is stabilized. I just wanted to let you all know that I plan to update it fairly soon after I find anything out. Of course, this time frame is assuming things happen on time. :-) We all know how that goes!

Everything is looking good for tomorrow. Max's heart rate was from 118-138 most of the day, ocassionally in the 140s. His nitric is off for now. He is on phenobarbital, versed, and morphine. He is on the vent still (delta p) and it's settings were 24, with the MAP at like 12.0-13.0 (depending on how much he is breathing). I know the settings will all be different tomorrow, but it is so good to know that he can wean off of things and do well!

Despite all the sedatives that Max is on, Max opened his beautiful little eyes more today. I went to pick up David at work and when we came back David said "Hey buddy" and that eye opened really wide and he was moving it around looking for his daddy. :-) Everytime David would say something he would open his eye (or try to open it) and look around. ( I must say, I was slightly jealous.. hehe) Poor kid can't really focus on anything due to being overly sedated, but he looks so cute trying to see us. :-) I, of course, did not have my camera with me and had to run down to the car to get it. I got some video and a couple of pictures. I cant wait til we see his eyes and he is able to be more awake, but this was awesome. I think Max is really trying to tell me not to worry, that he will be fine! :-)

Friday is now THE day!

So when I came in the morning- big shock- the nice nurse told us that surgery will be tomorrow. I pretty much knew this because of my conversation with the doctor last night. I do have a time though, 9-9:30. So I am glad that it is tomorrow. At least the doctors will be fresh and we won't be squeezed in. Max is doing good. His heart rate is in the 130s-140s, which is the best it has been in a few days. He is nice and wiggly and smiles sometimes even though he hasn't really opened his eyes yet. Doctors rounds went pretty good this morning. The did a head ultrasound yesterday and I have been anxious to find out what it said. Apparently, the bleed has progressed some, with new vessels being dialated, but they are also able to see clotting, which is an improvement from before ( I think). Basically, this would make him a candidate for ECMO if needed because the bleed is still a grade 2. Of course we are hoping he won't need it, as it still increases his risk of a bleed while on ECMO. The doctor did say this morning that they were pleased with how much they have been able to wean things and "fine tune" them before surgery. He said "this is as close to perfect as we can get with your intestines in your chest". It was nice to hear that he is doing well and we are hoping this means no ECMO. (ECMO is like a heart-lung by pass machine that helps oxgenate the blood. You are given blood thinners which is what would make the risk of bleeding increase) Max's nitric was stopped this morning and he was satting okay when I left (low-mid 90s) so we will see if he was able to keep that up or not. I am sure he will be back on the nitric after surgery but it is good that he can stop now. I think that is about all for now. I know you all will be praying for Maxton tomorrow and I am so grateful. It is amazing to read posts from everyone, especially those who dont even know us. We are so honored that you take time to pray for us. I can't wait to tell Maxton about all the lives he has touched when he gets older. I've been telling him now, but he is pretty drowsy. :-) Of course, who knows what all he will remember...

Surgery Update

I spoke with the surgeon tonight who explained that surgery may not happen until Friday. He said that the schedule is very busy tomorrow and that Maxton's surgery still might happen, but it would probably be on Friday. I am okay with this as David is off on Friday and I sure don't want them doing surgery when they feel rushed, so we will see what happens. I have been praying for the surgery and feel like God will let it happen when it is time. :-) Just wanted to let you all know that it may be tomorrow or it may be Friday! Other than that Max is doing well. Thanks for all the prayers and love and concern. We sure do appreciate it and I know it is nothing but the grace of God that has allowed Maxton to be such a fighter!

No more Nitric?

Maxton is still doing well. He is now on the morphine and has been having little shivers today. I am not sure if it is from the switch or not but I covered him up really good before I left for the afternoon. He has been able to lose his brain oximeter due to it running pretty high. He was down to 1 on his nitric when we were there and they were planning to turn it off sometime this afternoon. Hopefully when I go back he will have it off and still be satting fine. :-) His oxygen is back down to 40 and his delta p is back down to 24. All in all, he had a good night last night and a good day today. They also took one of his IVs out of his hand so he has a free hand to grasp mommy's finger. :-) When I went this afternoon they let me change his diaper because he had wet over his cathater again. They also let me take his temperature and swab out his mouth again. I love being able to help and interact with him. The other big news of the day.. Maxton had two poopies last night!!! Thsi was his first since birth so I made a big deal about this morning!!! GOOO MAXTON!!! :-)

The surgeons came in before we left to look at him. One commented how much better he looks this week than last week and I must say- I Agree! She also said that they weren't sure when they were doing surgery. We told her we were told that it would be tomorrow but she acted like that might not happen. She said that it really depends on how many emergencies they have come in because they are short staffed because it is Spring Break. I was not too happy to hear that- especially since my mom used her vacation to stay here another week (this week) so that she would be here for surgery. Hopefully he really does have surgery tomorrow. I am going to plan that he will anyways. Many thanks for all the prayers. I know that is why we still have Maxton with us!

Happy St. Patrick's Day!

Happy St. Patrick's Day! :-)


Had to make sure MAxton has on some green... not to mention keep his little feet warm.



Maxton with a miniature plush version of Charley Dog (his big brother!)




Some of the high tech equipment in Max's room.





This is the full version of Max's room. I had trouble getting it all in the picture!

Today was a good day. When we left the hospital tonight Maxton was still breathing a little over the vent, but not as bad as before. His heart rate is a little better. His nitric was weaned to 1.5 and his oxygen was at 46. :-) I am sooo proud of him. He is such a trooper. ( I know I say that every time, but it is so true. ) He was moving a lot tonight but they had just changed him from the fentanyl to the morphine. He kept raising one arm. It was almost like he was trying to wave. :-) Not much else to update. Surgery is still set for Thursday. Hope everyone had a good day!

I don't need no stinkin vent

I am not sure what the deal with Max is, but I think he got perturbed when they said he wouldn't have surgery until Thursday. Yesterday evening and all day today Max has been breathing WAY over the vent. While it is good that he wants to breath he still needs to rest. He is taking these huge breaths regularly and it is interfering with the vents job (not to mention causing his heart rate to go up from running in the 130s-140s to the 170s) Apparently, he also peed over his cathater today. I told his nurse that he is ready to graduate to being a baby who doesn't need all this equipment. I've been telling him all day that NEXT week he can try to be a big boy, but this week he needs to rest. :- )

This morning rounds went okay. They are going to switch his fentanyl to morphine because of the breathing. They decided that since he has been on fentanyl for about 2 weeks that he is likely just used to it, so they will make the change over sometime today. They turned off his dopamine. This means Max is only on morphine and versed! Go Max! His brain oximeter is reading way high (which is good) like in the 90s. This measures how much oxygen his brain is getting. They want him to stay above 50. His nitric oxide is down to 2.5 and his oxygen is at 52-55. His delta p is at 28, and the MAP is at 12.0. ( I am writing all of this in case some CDH mom in the future finds it useful and to explain things to Max one day). All of these numbers are good. We had to bump up the delta p due to his over breathing. The oxygen is up a little because they are weaning the nitric.

David and I are going back to check on our sweet baby later today. I got some cute pictures of him in his green socks (so that the nurses couldn't pinch him). Hopefully I will post them tonight! Happy St. Patricks Day!!

Surgery Date

Today we met with the doctors during rounds and apparently Thursday is surgery day. It was either Tuesday or Thursday because those were the only days with enough time on the schedule to move the surgery room to Max's NICU room. The doctor said they picked Thursday so they could fine tune things until then and get everything ready. Max is doing good. His vitals and sats look good. The delta p is weaned to 25 with a map setting of 13.5, but Max has it running at about 12.3. The doctor was asking the attending why this would be and the attending said that it is because they turned Max yesterday and his good lung is up so the machine isn't working as hard. Max is breathing pretty regularly and I love watching it. They are planning to wean his nitric today until he can't tolerate it. This morning it was set a 5 (actually 4.5). They are thinking he will let it go to 3, but not below that. I think it would be awesome if he could tolerate not having it at all. His oxygen setting is at 46. :-) I am SOOOO glad! He is such a little fighter! Anyways, keep little Hoss in your thoughts! I am worried about how he will react after surgery, but hopefully he will be just fine.

New Pictures!

This is from last weekend when little Max was about twice his birth weight!



So swollen.. luckily he was able to pee alot with the help of some lasic. :-) Note the cute little hairdo.



His lovely nurse turned him on his side on Thursday and he looked so comfy! Note the shrinking baby in there. I was excited to see he has elbows.

Sucking on the breathing tubes.

Sleepy time.. of course if you were on 3 sedatives you would be sleepy too.

Family picture from yesterday. We are so proud of our sweet baby boy!

A Wean Away

First off let me be a typical mom and just say that Maxton is soooo amazing. :-) Yesterday and overnight he was doing well with the nitric oxide weaning so it is now weaned down to a setting of 5, which is as far as they are wanting to wean. Everything else is pretty much where they want it pre surgery so the only plan for today was to try to wean his oxygen some more. They are pleased with where it is but I think they are figuring if they can wean it some more, why not? It is at 55 this morning and the plan is to wean it until it gets to 40 if possible. I am so proud of my little man and think he is just letting them wean away. As far as surgery goes we aren't sure when it will happen. The nurse said that she thinks it will be either tomorrow or Tuesday. As of now, it is not on the schedule, but hopefully we will know more tonight.

In exciting "mom" news- Yesterday I was able to clean out his mouth with a little antibacterial swab. I thought for sure he was going to flutter open one of those little eyes, but never did. His eyes have not been open yet due to being on so many pain meds. Well, today that little stinker opened his eyes. Of course he waited until Momma left to go get some lunch. I had cleaned out his mouth again this morning and he made some really cute faces and tried to move his arms and legs. Then he started sucking away on his breathing tubes. He looked so cute. I stood there for about 30 minutes staring at him hoping he would open those eyes. I could see his eyes moving behind his eyelids, but nothing. So I resigned myself to the fact that he was not going to open them because he was just on too many pain meds. Then when I came back about an hour later I was informed that they had opened and he had looked around a little then closed them again. I tried to clean out his mouth again in the hopes he would open them back up, but alas, nothing. I am okay with this, but sure would like to see those pretty baby eyes looking up at me. Maybe tonight when his dad gets off of work and we go over there he will open them for the both of us.

Are you impressed yet?

I think Maxton is trying to ask me if I am impressed with him yet. Since this time last week Maxton has lost a TON of fluid. Probably like 5 or 6 pounds of fluid. He has weaned his Delta P from 49 to 23. His oxygen from 100 to 52. His MAP on the vent from 18.0 to 13.0. His dobutamine is gone as of today and his dopamine has been weaned to where they want it (3). I am just so impressed by little man. The nurse today said she thinks that he is letting them wean more than they thought he would. So, today they decided to wean his nitric oxide. They are planning to wean it to 15 I think. So far is he down from 21 to 18 with the plan to go down by 1 every hour as long he is still satting well. When I left he was still satting 100 pre and 100 post. His heart rate was in the 130s-140s and his blood pressure mean was in the 60s, which is where they want it. His ECHO this morning showed his pulmonary hypertension was improving and is now about 1/2 of his systolic pressure. I am not sure exactly what this means, but I do know the doctors were pleased with this progress. Surgery is still likely next week. The plan now is to wean as many things as they can before surgery so that there is more room to go up after surgery if it is needed. of course we know they will have to go up on some things after surgery but the less they have to go up the better. Also, Maxton is breathing over the vent some today and it is pretty regular. They said this is fine as long as it isnt interfering with his blood gases, which looked good so far today. Just thought I would give an update since we came home this afternoon to rest. :-) Thanks for checkin in!

Holding His Own

Maxton is such a little fighter! He is hanging in there and still letting them wean away. I am so glad to see him making progress. Last night he was weighed and weighed 10 pounds 4 ounces. This morning in rounds the doctors were pleased that he had gotten down closer to his birth weight. I think they forgot he was a big baby again because after the resident said how much he weighed at birth both the fellow and attending were like.. oh okay, so he is close to his birth weight. :-) I was like yeah... he was a big boy! Anyways, basically it looks like surgery will likely happen sometime next week. I am thinking earlier in the week, but a date hasn't been discussed. I know he is pretty much weaned down to the levels they want him to before surgery so he just needs to lose a little of the swelling. He looks so much better now... like a baby again. :-) I love looking at his little face.

The doctor took time to caution me that Maxton could be very sick again after surgery, possibly worse than he was before surgery. I am hoping that this is not the case. ECMO was mentioned again- that he might need it after surgery, if he is a candidate at that time. David and I are very nervous about ECMO due to the previous brain bleed. It hasn't been checked lately, but would be before going on ECMO. I was aware that he would possibly get very sick again but am hoping and praying for the best. I know my little man can do anything as he has proven this several times now.

The plan for today was to continue to wean his dobutamine from 8 to 3.. which may possibly be done by this point as they were weaning one an hour. I think that was the entire plan other than losing some more weight. Doctors rounds go much quicker when you are doing "well". :-)

As always, thanks for the prayers and kindness and support. You other CDH moms are awesome! And obviously I love my family and friends and everyone else who also checks the blogs. Please continue to pray for us and also all the CDH families out there as this condition is so very serious and scary.

Uneventful day

I am almost scared to post this, but so far today has been relatively uneventful. Maxton continues to allow the doctors to wean his meds and settings, which is exactly what they are wanting to see. :-) His delta p (vent) setting is down to 24 with the mean on 13.5. His oxygen was down to 62 when we left, but they are turning it down every hour as long as he tolerates it. Today they also weaned one of his blood pressure meds, dobutamine from 20 to 10 and they may continue to wean overnight. I am so proud of him. I had a pep talk with him and he is doing so well with what the doctors are wanting to see. There is talk of possibly doing his hernia repair next week as long as he continues to do well and gets some more of the fluid off of him.

Today his super great nurse was able to turn him and now he is laying on his side. The only "hiccup" today was that he has a small bed sore on his bottom where he was laying in the same position for so long. Poor little guy. He now has some meds and dressing on it, so it should heal in about a week. I am hoping that he is able to continue to tolerate the weans. :-)

Oh yeah, I forgot to metion that they never did put in a second tube. The doctor felt it was unneccessary due to Maxton tolerating the leak very well and continuing to be weaned off of meds. Hopefully this leak will not interfere with the weaning tonight. His tummy looked much less "ballooned" today so some of the air must be getting out the other tube.

As always, thanks for checkin in on us. We really appreciate everyones support during this difficult time. David and I are already learning so much and growing so much. It's amazing what one little guy can do!

Chest Tube- Take 2

Apparently sometime this afternoon Maxton developed another air leak in one of his lungs, so this evening a second chest tube will be inserted. His settings pre leak were down to 28 on the vent with a mean of 12.5 (where they are wanting it) and his oxygen was at 67 (it was at 58 but due to weaning the vent they had to go up a little on the oxygen). The air leak was noticed because he was starting to split in his sats and when his RN went to check on him (by the way I LOVE his nurse) his tummy looked pretty full. So after they did a chest X Ray they confirmed that he was leaking air. Luckily, his settings were only minorly adjusted on the vent to get him back to not splitting. His vent is now at 32 and the mean is 13.5. His oxygen is at 96 though, but I am hoping after the second chest tube they will be able to come down off of it some overnight. My poor guy keeps getting these little "glitches" but hopefully he will continue to well with the weaning. They also weaned his dopamine slightly today.

This morning the doctor called him the amazing shrinking baby. :-) He is ALOT less swollen today than he has been and sort of looks like he did after he was born again. Another doctor commented that it was nice to see a baby in there again. :-) The docs were pleased with the weaning and Max's ability to tolerate it, so if we could just get these little leaks under control I think we would be much more comfortable. I gave him a pep talk so hopefully he will listen to me and be good for the nurses and docs tonight.

On a sad note, please pray for Marion and Jason as their precious daughter Addison lost her fight with CDH today. It brings home the reality of just how lucky we are to still have Maxton with us and just how serious his condition is. I have faith that God is answering prayers and we appreciate everyone thinking of us but if you could, please pray for all the other CDH babies as well. The families listed to the right (and many others that I havent had time to put up) have been so supportive. If you are bored, check out their blogs as well.

Quick Update

I was so scared that the chest tube would cause an episode and Maxton's settings would have to be increased. Luckily, that has not been the case thus far. This morning his oxygen was down to 62 and the vent setting is now down to 39 from 49. :-) I am so happy my little Hoss is hanging in there. I know he is fighting so hard and am hoping he has another day with some baby steps forward.

Chest Tube

About 10 minutes after leaving the hospital (and making sure with the nurse that there hadnt been any talks of chest tubes lately) we got a call from a surgeon saying they were putting in a chest tube. Things really do change minute from minute. After about an hour we got a call saying that it had gone well and they were waiting for the chest Xray to confirm correct placement, but that Maxton had tolerated it very well. I asked about his settings and it sounded like everything was kept the same, so I was very pleased with that. The procedure took about 10 minutes and seemed to go perfectly. Little man is SOOO strong and I am so very proud. He continues to amaze me everyday.

I heard in rounds this morning that they are using him as one of their case studies. I think he has the doctors a bit baffled. :-) The RN said this today "No offense, but Max is one weird little guy". I think God sent him here to challenge those doctors and I am glad he is teaching them too. I hope all is well with everyone. As always, thanks for checking and praying/thinking of us!!!

"Why Rock The Boat"

When I went back to see Maxton late this afternoon the doctor was back there because he was having a "mini episode". He quickly recovered (with the help of little pain meds) . The doctor said they were pleased with the way Maxton was able to now self regulate during an episode without a lot of fluids and also pleased with the way the weaning was working. In the time since the morning, they have decided not to do anything about the air link at this time. Tomorrow may be a different story, but for right now the hole will just be there and the air will be drained later. Maxton has been weaned down to 69 on the oxygen and also further weaned on his pressures on the vent. The next thing is to wean the other vent setting ( I am honestly not sure what it does, but I know it is set right around the maximum). Basically they are suprised his still tolerating weans with the leak and the doctor said since he was doing well with it "why rock the boat". I am praying that Maxton continues to tolerates the weans throughout the night. He is also getting some good doses of lasics and seems to be putting out alot of the fluid that has accumulated. The doctor said today that Max was probably double his birth weight. I think he may have forgotten that he was a big boy to begin with, but I would say he has several pounds of extra fluid right now that needs to go away before they can do surgery. Here is to hoping for good night and good day tomorrow. Thanks for the prayers, they are definately working.

Uncharted Territories

When I called this morning I was very pleased to hear that Maxton was being weaned down on his oxygen to about 94 and he didnt have any episodes overnight. However, when I got here this morning the nurse was telling me that they may have to put chest tubes in. apparently, Max's left lung now has a hole in it. This is not uncommon in CDH babies, but the typical treatment is a stay on ECMO. As I have already said, MAxton is not really an ECMO candidate. Yesterday his head ultrasound showed that his brain bleed was still a stable grade 2, but it had not improved any. The doctors are sort of confused as to what treatment would be best. A few doctors still recommend ECMO so as to not further damage the lung, but the risk for brain damage because of the preexisting bleed is still very high. Another set of doctors feel that perhaps a "chest" tube should be placed in the abdomen to allow the air to escape. Typically, a chest tube is inserted between the ribs, but with Maxton's organs still being herniated this is not safe. They would like to be able to just repair his hernia and then put in chest tubes, but they feel like the amount of swelling on Maxton would not allow for a good repair of the hernia. They have been debating since early this morning trying to figure out what to do. David and I feel like the tummy chest tube is the best option as we would not want MAxton to have a huge brain bleed on ECMO resulting in death or severe brain damage. The doctor we met with agrees, so hopefully the surgeon will agree as well.

In the meantime Maxton is doing very well being weaned. I am so proud of him and feel like the prayers and pep talks David and I have been giving him are definately working. He hasn't had an episode today and his oxygen is now at 78 and he is still satting 100 both pre and post. His vent setting is still high but they are hoping to wean that starting possibly this hour. His bi carb drip is gone and his dopamine is down to 10, which was the goal from yesterday. His vitals are right where they want them. If it wasn't for this hole in his lung we would be having a good day. I appreciate everyone checkin in on us and have read everyones comments. I wish I could reply to you all individually, but know that I have been reading your well wishes!! I will hopefully update later about what the doctors decide!

Extra prayers today please!

After meeting with the doctors this morning it has been decided that Maxton needs to prove that he can be weaned on some of his support. Yesterday his oxygen was bumped down to 80, but overnight his nurse moved his head to the other side and he had an episode, so it was bumped back up to 100. His vent was also bumped back up to 47. Basically, they will be weaning both of those meds today, along with his dopamine. Please pray that he tolerates this well! They are very concerned about the amount of support that he has needed thus far and really want to see him needing less to maintain himself. I am praying that everything goes well. ECMO was again mentioned as a possibility if nothing else is working, but the risks with it are HUGE due to Maxton's brain bleed. The are doing another ultrasound today to determine if the bleed is still present. Please pray that it isn't, then maybe Maxton can be placed on ECMO. I feel guilty because I prayed so hard that he wouldn't need it and now that he does he doesn't qualify for it due to his brain bleed. Hopefully, he will be able to maintain himself today and show the doctors just what he is made of.

Also, they have mentioned the possibility of his "episodes" being seizures. They are giving him some anti-seizure meds in the event that they are seizures. If they are seizures it could indicate that the brain bleed has caused some damage. However, it could also mean that he will be able to be weaned off the support that he is on. He was doing well yesterday with the weans other than the episode after his head was moved.

I feel like today is going to be a long day for us. I am really praying that he does well with the weaning as this would make the doctors much more comfortable with the inability to go on ECMO and comfortable with Max's plan of care. I plan to update later assuming there is a computer available. Thanks for everyone's love and support. My little guy is fighting as hard as he can and I cannot explain just how proud of him I am. He has already taught me so much and I will never be the same.

Teeny Tiny Steps

Maxton has had a pretty uneventful couple of days. He has a few "mini" episodes but is able to recover pretty quickly with his preferred regimen of fluids and a bump up on the vent or oxygen. I think the doctors have finally figured out exactly what he needs when he is starting to have an epsiode and have been able to keep a larger one from happening. Today they were able to wean his oxygen down to 80 but he had a mini episode so it was back u pto 84 when I left. The plan overnight is to simply wean it back to 80. The larger picture goal is to get it down to 60.

I think the doctors wanted Max to make bigger progress in the beginning but have now learned to listen to him and to understand that he will do things in his own time. I am so proud of how hard he is fighting. Whenever I visit him he looks so precious and tries to wiggle his little toes (nice to see but I wish he would just rest).

The good news is that CO2 levels are up. Today one was 38. The doctors had said yesterday they would like to see them above 30 (yesterday morning his highest was like 26). So I was very glad to hear 38 this morning.

Overall I think Maxton is doing a little better. I think the doctors would like to be able to put him on ECMO but are still not able to because of his brain bleed. It is not any worse, but still not any better so for right now the plan is still the high oscillating vent. We were told today that Max is basically getting the treatment that would have been given to ECMO babies before ECMO existed. I am okay with that.

Thanks for checking the blog and leaving posts. Everyone is so encouraging. I am so proud of my little Hoss. Praying for a restful night.

A little Better

Last night they got us a room at the hospital so that we would be close if Maxton had another episode. So far he has done well. The vent was at it's maximum setting of 50 yesterday and today they have been able to wean it to 42 and change the way Maxton is laying, all without an epsiode. I am hoping that this trend continues.

The doctors in rounds this morning were much more positive than the doctors yesterday. They are pleased that Max has been doing well with his sats. The main concern is some brain damage due to low CO2 levels because the vent has to be so high. As of right now ECMO is still not possible due to the brain bleed. They are doing an ultrasound today to check the bleed in case Maxton has another episode to see if ECMO if possible later. The doctor said they have learned that Maxton doesn't like too many changes at once and hopefully they are figuring out his "plan of treatment". I have learned these babies are so tempermental and each has their own plan of their treatment.

Todays plan: very, very slowly wean the vent
try to wean off of most of the antiobiotics
wean the dopamine a little
Add a monitor to montior blood flow to the brain to see if brain damage is likely occuring or not.

I think that is it for the plan. I am so proud of my little man. I told him we couldn't wait to hold him and love on him and he kicked his little foot this morning. I think he can't wait either. Oh yeah, they are also increasing his fentanyl to try to stop some of the movements. he was awfully wiggly for a sedated baby this morning. :-) Of course we liked to watch him move a little.

Thanks for you support and prayers!

Still Trying to Fight

Maxton is still trying to fight. When we got here around 6 he was in the middle of one of his episodes. We walked back to a room full of people and monitors beeping with levels falling. After about an hour and a half he is now "stable" again. Unfortunately, he is also on the maximum amount of support that they can do for him. Now, it is up to him. We know that he is a fighter and will do his best. We are praying that God be with him and fight along side him. We were told that at this time he has about a 30% chance of making it. We are praying like crazy that he doesn't have another episode during the night because there isn't anything they will be able to do. They did mention ECMO again. The brain bleeding is not any better, but it is also not any worse. They are not sure whether to do ECMO but will likely do it if he has another episode. Please pray for our little man. I can't imagine losing him as we both love him so very much. We are trying hard to stay positive and know that other babies have been in position and come through just fine. This gives us hope and we try to remember everyones stories when meeting with the doctors. We appreciate you all, more than words can ever say.

Holding his own

Maxton has been hanging in there today. I called to check on him in the middle of the night and he was doing pretty good. He is on alot of support right now, which has them concerned, but he is maintaining his levels. His blood pressure looks good. In the middle of the night he wasn't splitting, which is a sign of pulmonary hypertension. His per and post sats were both in the high 90s. When we got there this morning; however, things weren;t looking all that great. His heart rate was in the 190s and his pre sats were like 80 and post were in the 50s. They decided to bump up his vent a little and things started to improve. Within about 30 mintues his sats were back in the 90s (pre) and 80s (post), with his heart rate in the 150s. When we left both sats were in the 90s or even 100. I called a few mintues ago to check on him and he has maintained things this afternoon and he has even tolerated a small bump back down on the vent. They are going to try to wean it a little more and hopefully he will also tolerate that.

As far as the brain bleed goes, I haven't really heard much about it today. They did an ultrasound earlier but since we left before the results we havent heard. I do know they haven't had to give him any blood products today so I am guessing it has not been continuing to bleed. They gave him some plasma yesterday so hopefully that did the trick.

We were told that little Hoss is the sickest baby in the unit right now, which was pretty hard to hear. I feel blessed that he is here and love every minute I can spend with him. I am hoping that he maintains himself today and continues to be able to tolerate the small weans. :-) Thanks for checking in on little Hoss and know that we feel so blessed by your support and prayers!

Pics

I decided that I had to come home and get some rest. I know Max will be trying to get some rest tonight too. He hasn't really had an episode since 5, so hopefully he will do okay tonight. We are planning on going to rounds in the morning so maybe we can get some more information tomorrow. Here are some pics of our little man from yesterday. :-)

Here is little man hoss right after birth before going to Children's



First family picture.



Little Hoss trying to get some rest.





Isn't he beautiful!!!!



Mommy and Max when I finally got to go check on him.

Another Update

Earlier today we were told that Maxton would definately be on ECMO and they got us to sign consent and everything. we were told the procedure would take an hour so when they called 30 minutes later and asked us to come back for a patient consult I about freaked out. I was half crying going back there and my poor "rock" of a husband looked like he was about to lose it. We thought the worse had happened.

I am not sure if what they have told us is neccessarily good news but he is not on ECMO at this time. Maxton has small bit of bleeding in his brain and it has increased slightly since yesterday so they decided that they cannot do ECMO on him at this time. Basically the docotr said that if they did ECMO today there would be a 5% chance that he would live but that he would mostly bleed out. They did tell us that that may change and he still may end up on ECMO but that it would be unlikely unless they thought death was certain. Pretty scary to hear that, let me tell you.

Luckily, in the 30 mintues between doing ECMO and then not doing ECMO they were able to get him stablized. His sats are still splitting. He has sats being monitored in two places and they would like them to be close together, within about 5 numbers, but Maxtons are 100 in one place in the 70s-80s in the other. He is now on a high oscilating vent which is working fairly well. He has had a couple of episodes since the ECMO talks but has been bagged and been able to recover. He is also on several new meds. His blood pressure seems to be somewhat stable. His pulse is fairly high, at around 160. (earlier it was like 220 so we will take 160!) They also had to put in another PICC line earlier as they have been sticking him all day trying to get him stable.

They also mentioned earlier that Maxton may have an infection because some of his liver readings were "off". The doctor said that they actually hope this is the case because that would explain many of the problems that they have had today. They have swithced antibiotics hoping that the switch will knock out any infection and help stabilize little man.

I cannot decide whether I need to go home and rest (Iknow I should) or stay here overnight in case something changes. I am leaning towards going home since we live like 20 mintues away, so if I do I will post some pictures. Thanks for praying for us and we appreciate everyone.

Keep Max in your prayers

Overnight I called a couple of times to check on Max and his sats were splitting, which is not good. Sometimes his oxygen is at 97 and sometimes in the 80s or 70s. This morning he had an "episode" and was pretty hard to get stabilized so I was trying to get discharged so I could come over here and be with him. Well, when I got here he had just had another episode and they were working with him to get him stable. Right now they are giving him some blood since some blood work showed he was predisposed to bleeding. They also talked with us about ECMO. It looks like he may be on it by this evening, obviously we are really hoping not but know that if that is what the doctors feel is best then we will be okay with it. They are also in the process of changing him to a different vent so hopefully that will help and he will become more stable. He is still either trying to breath over the vent or getting hiccups alot. When I was back there it looked like he had the hiccups so I asked and the RN told us that they have been trying to figure out if it is him trying to breath or hiccups all morning.. she said they just aren't sure. I think that is about all for now. I am officially discharged and will be over here for a while, but will hopefully be able to post some pictures of Maxton later today! Please keep him in your thoughts!
Ashley

Hangin in there.

I got to meet my beautiful son officially this morning around 4:30. I did see him after the delivery when I leaned up on the table to get a quick peak before they intubated him. He looked so pitiful at first. His heart rate had been kinda dropping the last few pushes and when he was born he was purple and his little mouth was open without any sound. At first I was worried he wasn't alive, but he pinked up and he was doing very well when I met him this morning. His blood gases were good. According to the doctor he is doing "great"... he said that twice, once when we spoke at 4 and once at 8, so I am assuming it is true. His sats were between 96-100 with the vent and he was really breathing over it. He is still trying to breathe over the vent. They have him on fentanyl but he is pretty stubborn and isn't wanting to rest too much. His pulmonary hypertension is doing well with the nitric oxide they are giving him.

I just saw him again about 30 mintues ago. They put a PICC line in this morning. They also had to add some dopamine for his blood pressure. Overall, they are still telling me that he is looking "great". I feel very relieved to hear this and am so glad to see him looking so well. Apparently the surgeons met this morning and think that if he continues to do this well they may do surgery on Saturday. I was very suprised to hear this and wasn't thinking about surgery talk at all.

Hopefully I will be able to get out of the hospital tomorrow. I am looking forward to going home and getting some rest and of course, coming back to see my little Hoss. He weighed 8 lbs 11 ozs last night and was 20 3/4 inches long. I appreciate all the prayers everyone has said and feel so lucky to have such a good support system. Plan to update tomorrow unless something happens tonight.

Maxton's arrival

First let me say this is Ashley's dad and we appreciate all the prayers and concerns for Maxton. May God Bless You. Maxton arrived in this world at 11:30pm 3-3-09. He weighed in at 8 pounds 11 ounces. As of this blog he was being examined. Everything went fine. Ashley is resting comfortably. I will update you tomorrow. Again from our family thanks for everything!

Reflections of an almost new Mommy :-)

So today I have been a bit of a basket case. I am very excited about finally meeting Maxton, but everytime he kicks I wonder if it will be the last one I feel. He hasn't been too active this last week. Earlier he had the hiccups and I was wondering if it would be the last time I felt them. Despite everything I have enjoyed being pregnant.

At my first appointment in July (7 weeks gestation) , I was told that my placenta had a bruise on it. The doctor was not too worried about but decided to do a follow up ultrasound in 4 weeks. At the follow up ultrasound at the end of August, I was told that the bruise had healed but that there appeared to be extra fluid around the babies neck. It was a Wed. and they had a follow up appointment with a high risk doctor scheduled for me for Thursday. I knew it must be serious if they had an appointment for me the next day. When I went in they tried to do a nuchal fold test, but Maxton would not show them the part they needed to see. Anyways, we were told that based on the pictures of the babies neck we were likely looking at either a Down's baby or a Turner's girl. The doctor was pretty certain that the baby would be a Turner's syndrome baby. Anyways, I opted to have a CVS based on this. The Fish results came back a normal boy, as did the final results. This was the beginning of Sept. I remember how happy we were. My husband high fived me so hard my hand swelled. We felt so blessed and excited.

Then about 7 weeks later in October I was told that the baby had a possible hole in his diaphragm. I came home and googled everything I could and found CDH. It was a Friday and my follow up was on a Monday. I had read tons of things about CDH and found that when I went to the appointment I knew everything the doctor had said. I knew before they told me that my baby would have CDH. I had a sort of peace about it that I felt God would only have given me if I had to face CDH.

Of course, Maxton has also been potentially diagnosed with coarctation of the aorta. It's been one heck of a ride. I must say since the coarctation appointment, I have mainly gotten good news, which has been good!

I really feel that Maxton will be a fighter. He has made David and I so strong and even though we are scared for him, we cannot wait to have him home with us and teaching us more about ourselves.

CDH has already changed my lives. I read other blogs and I cry with strangers who really aren't strangers at all. My family has grown by at least 50 people with the addition of just one child. I feel blessed to know this people and although I wish that I didn't have to deal with CDH and that I could bring my baby home on Thursday, I am so grateful to the mothers who have come before me and to those who are currently expecting. I always felt like I wanted to work with children with cancer.. that has been my dream job. My new dream job is to work with CDH families and babies and make lives better for the CDH community. Maxton isn't here yet, but I know my purpose in this.

Please continue to pray for us. Pray for Sky and Carla who lost their beautiful son, Joseph this past week. Pray for Charlie, Davis, Addison, Oakley and other CDH babies fighting to live as we speak. I love each of this families and though I may never meet them personally they have all touched my lives in ways I cannot explain. Tomorrow by this time, little Maxton should be here. We hope to update tomorrow night so be looking. :-)