a letter to Aiden

My dearest Aiden,

I have loved you since the second you were born. I’m so sorry that you had to leave this earth so soon. I will always love you. I will never forget you, I can promise you that.  You have changed my life forever. Even though you were only here for a short period of time, you have touched more lives in one month than most people can in a lifetime. There is so much love for you, even from complete strangers. People looked forward to hearing how you were doing. People from all over the world were praying for you. You have been such an inspiration.  Through you we know that miracles do happen. You are such a strong little boy. You had so much fight in you it was unbelievable.  I am so sorry you had to go through that. No baby should ever have to endure what you went through. But you never gave up. You have taught me to never give up and never lose hope.

I only got to hold you for a short time but in that time, you and me bonded more than any mother and child ever could in a lifetime. I was so honored to give you your first and last bath. It is a memory that I will hold with me forever. You took your last breathes and died in my arms as I snuggled you as close to me as I possibly could. You held onto my finger with your little hand and you squeezed it so tightly.

I never got to rock you sleep, dress you up in cute little outfits or feed you a bottle.  I never even got to see your gorgeous blue eyes or hear you cry.  You have never seen my face but I know that you knew my voice. I never got to sing you a song or read you a book. I wish that I could of seen you kick your legs.

Every time I walk in your room I picture myself putting you to sleep in your crib. Or you cooing to your light projector. I picture you crying and me picking you up and soothing you. When I’m in your room I picture what life could have been like with you here.

I will make sure that Savannah and Sierra  will never forget who you are.  You have been a part of their lives since the day I found out I was pregnant with you. Matter of fact, Sierra was the first person to know that I was pregnant. Your sisters were so excited that they were going to be big sisters. They gave you a hug and a kiss every night while you were in my belly. Even though they never met you, they love you so much.

I’m sorry that you had to be born sick.  I never wanted this for you. I wish that I could of traded places with you. We knew that you were sick before we had you but that didn’t change the fact that we loved you and we wanted to give you life. I know that you were put on this earth for a reason. Now you are an angel looking down on us. I love you and I will see you again one day.

                                                                                           Love Always,

                                                                                              Mommy

Funeral Arrangements

Edmonds&Evans Funeral Home 6941 central Ave Portage IN Friday July 20 Visitation 11-1 pm Service 1 pm Please wear blue pink or yellow. These are the CDH awareness colors.

Rest in peace my sweet little boy

Aiden earned his wings today and now he can rest peacefully in heaven. Saying goodbye to a child is the most heart wrenching thing anyone could go through. He fought so hard but now we know he is no longer suffering. He is an angel now and will be looking after his sisters from afar. I want to thank everyone that has been following Aidens story. This little guy has touched more peoples lives in one month than some people do in a lifetime. Thank you for all your prayers. Funeral arrangements will be posted soon. RIP Aiden Robert Grant 06/13/12-07/14/12

Not a good day

Aidens oxygen levels are dropping. He is at his max dose of all his bp meds. His kidneys aren't working. They keep giving him volume for his bp but if he doesn't start to pee he will swell up and his oxygen will drop even further. We need a miracle right now. Everyone please pray for aiden right now. He needs everyone to pray for him. He has come to far to not make it. He has been so strong but his body needs to work harder to overcome this. The doctors said they can't do anything else for him so now it's in Gods hands!!!

In the next few days

Either Thursday or Friday will be the very last attempt to get aiden off ECMO. More then ever before Aiden needs your prayers. We are not ready to say goodbye to him. He has come so far and he has been such a fighter but we are scared to death of losing our one and only baby boy. This journey has been by far the hardest thing we have ever gone through and we are so thankful to have everyone's support. Please pray that the doctors are guided in the right direction and he is able to come off. That his heart is strong and that he can overcome his pulmonary hypertension. That his kidneys start working and that his blood gases and vitals are right where they need to be. Thank you all for your support!!!

The past few days

Aidens blood pressure has been all over the place. Either it is high or low and they haven't found a happy medium yet. They are constantly playing with his bp meds and blood products to keep his bp steady. They thought he was maybe bleeding internally somewhere with his bp acting like that so they did ultrasounds of his abdomen and head and those came back ok. They also thought it could be infection so they have him on vanco. All his cultures have came back neg. Aiden has a patent ductus arteriosus (a shunt in the heart that is suppose to close after birth didn't close) so he had been shunting a lot the past two days. Oxygen rich blood mixes with Oxygen poor blood putting a strain on the heart and increases pressure in the lungs. it also decreases oxygenation to the extremities. He is still bleeding from his chest tube and his urine. They did a echo on mon and they will repeat it right before they try to wean him off ECMO to see if his pulmonary hypertension had gotten any better. The goals for the next couple of days are to come down on the bp meds, get fluid off if they can and to keep his bp steady. Do keep those prayers coming. Thank you!!!

This is where we stand

Yesterday they tried taking Aiden off ECMO because all the bleeding. He only was able to tolerate it for about an hour and a half before his heart got too tired. They realized then and there how serious his pulmonary hypertension is. They tried giving him factor 7 for the bleeding. It slowed it down but it didn't stop. They said if they can get the bleeding to stop they can give him another week or two on ECMO to see if his pulmonary hypertension gets better. They said it may or may not get better. It usually gets better within a few weeks but in his case it didn't. However if they can't get the bleeding to stop he cannot stay on ECMO. So please please please pray that they can stop the bleeding and that his pulmonary hypertension gets better so when they try to get him off ECMO again he can tolerate it!!! Thank you so much

Failed attempt

Aiden had his surgery on 50% ECMO. After surgery his blood gas came back really good. So they decided to clamp off ECMO because they were hopeful that he would have better ventilation once all the packing was gone and they thought that would get him off ECMO even if it was only long enough for him to clot from the surgery. 20 minutes after they clamped off they did another blood gas and that one came back bad. So now he is on 100% again. Now the problem is he is bleeding again. Not as bad as before but now he receiving blood products. The doctors are having a hard time getting his extra fluids off so having to give him blood and another med to stop the bleeding is discouraging.So the plan is to get as much fluid off as possible and try taking him off ECMO again. Maybe the third time will be a charm!!!

Surgery # 6 (for real this time)

They decided to go ahead and do his dressing change surgery. They said that the tight packing was causing ventilation issues. They did the surgery on 50% ECMO and it went just fine. They didn't close it up. They packed it very lightly so let's hope that it doesn't bleed. He didn't need any blood products or extra fluids and hopefully it will stay that way. They will monitor him for a while and depending on his ABG's they may just take him off ECMO. So we will see. Back to the waiting game. More updates to follow!!

Sooo close!!!!

Aiden was suppose to come off ECMO today but last night he started to bleed again and his blood pressure dropped. They had to give him a lot of volume and blood products so we are back at square one. The goal for the weekend is to get fluids off of him. They also turned up the vent to see if he can tolerate that for the weaning process of ECMO.

Second go round!!

Well the surgery he was suppose to have yesterday they decided to postpone. They didn't want to interfere with all the progress he has made with getting off the fluid. Tomarrow is a big day. They are planning on trying to take him off ECMO. This time I believe he is ready and will do just fine without it. Also if all goes as planned they are planning on doing his dressing change surgery tomarrow as well. They may even close the incision up. They aren't sure yet. A bit of shocking news we found out that Aiden has extra fluid in and around his brain. They don't know the cause. They are just closely monitoring it for now. So let's pray that it doesn't mean anything and that it will heal in time!!! On a good note his chest x rays have shown that his right lung is filling up with air and his left(bad lung) is filling up too they just can't tell how much. So they prayer for the day is that he can come off ECMO smoothly and that his surgery goes well and that they can close it up once and for all!!! Thank you:)

Surgery # 6

Aiden will have his 6th surgery today. Unfortunately he is still on ECMO. So everyone please pray that he doesn't have any excessive bleeding during or after the surgery. We ate praying that his vitals stay perfect and that he doesn't require a lot of blood products. He still isn't losing the extra fluid so they have him on another med so let's pray that the fluid will start to come off so he can start to be weaned off ECMO!!!

Just keep peeing!!!

So today's big project for Aiden is to pee, pee, and pee...lol. He still isn't getting the fluid off so the doctors have him on two diuretics and are using a filter on the ECMO machine to pull fluid off but Aiden isnt wanting to give his fluid up. I'm excited for him to lose the fluid because I haven't seen his normal size yet...just pictures. So I want to see my 5 lb baby!!! Dressing change surgery Probley thurs or fri. Hopefully he is off ECMO but Aiden is being stubborn with his fluid so he Probley will still be on ECMO. So the prayers for this week consist of Aidrn getting off all his fluid, him coming off ECMO and his surgery to go very smoothly off ECMO!! I have a couple of side notes as well 1. For Aidens fans that are expecting a CDH'er, please take this advice. Never ever give up hope!!! Aiden coded the day he was born, his "good" lung collapsed, and we were told not once but twice by the doctors and I will never forget these words "If this doesn't work, I'm sorry there is nothing else we can do for your baby" (pertaining to all the blood loss)but Aiden has overcome all of that. Secondly, never underestimate the power of prayer!!! 2. Aiden has had several several several blood transfusions that have saved his life!! So I am asking people to donate blood and save a life!!! 3. My little miracle is in the paper (the times) so go check that out!! I love CDH awareness!!!!

New news

Aiden has been doing good. Doctors would like to see him off ECMO by the end of the week. They have decreased his med to stop bleeding. They have increased his diuretic because they said he is not getting rid of fluid as fast as they would like him to. He has had a little bleeding from the jp but nothing to be concerned about. They would like up do his dressing change surgery wed or thurs. they would prefer to do that off ECMO but if hey have to do it on ECMO they will. Our poor baby has at least 3 more surgeries to go and has had 5 already but he is such a little trooper. The doctors aren't sure when they want to close up his rt chest from his lung surgery or when they want to do his hernia repair. I guess one day at a time...lol. That is all the current news I have so thank you again and again!!!

Thank you!!!

I would just like to say thank you to everyone that has been following Aidens story. Thank you for all the prayers and support. We have had more support than I ever could of imagined so thank you!!! You guys are awesome!!! Thank you to everyone who has donated items and money for the fundraiser!!! And a special shout out to my family that has been extra supportive during this difficult time!!!

I LOVE good days!!!

Aiden is officially back on ECMO 100% and his vent setting is almost all the way down to resting setting. As for the bleeding...virtually none!!!!!! He has had a little bleeding which is ok. We just don't want too much bleeding. He has recieved very little blood products and he was started on a diuretic so some of his puffiness should subside. He has good urine output and has beef pooping...lol. So we hope that his bleeding stays under control and that he can come off ECMO very very soon!!

Waiting

Aidens ECMO is on the lowest setting and his vent is on the highest setting but ECMO can't stay this low for long. He is doing ok right now. The bleeding had slowed down. Eventually they will raise ECMO and hope he doesnt start to bleed again. If he does they will have to remove ECMO all together and then his survival rate will drop. He will then have to rely on the vent alone which blew his good lung when they tried him on the vent alone the day he was born. Let's pray that his repaired lung will hold out for him. Let's pray that his numbers stay good and the bleeding stops and when his ECMO is raised that he doesnt start to bleed. Let's pray that he doesnt need blood products or volume. Thank you all again!!!

More prayers please!!!

Aiden's chest won't stop bleeding. They are giving him a medication to try and stop it from bleeding. If he doesn't stop bleeding by 6:00 they will have no choice but to go in again to try and stop it. Please pray that this medication works for him. He has already been so much and our little guy needs a break. Thank you

Another surgery

Last night Aiden had his dressing changed and they decided to stitch it up and out in two chest tubes. Well this morning we got a call from the nicu telling us that there is too much blood draining so they have to go back in to see what is bleeding. So right now Aiden is in surgery again. This time they will pack the wound and leave it open so they can see what is going on. So let's pray that they find the bleeding and they can stop it. That he needs very little blood and fluids. That his vitals stay normal

Dressing change

Right now the surgeons are changing Aidens surgical dressing where they fixed the hole in his lung. This procedure is considered a surgery. They are goi g in to see if the lung is still bleeding. If it isn't they will try to stitch the site up. If its bleeding they will pack it and redress it. This procedure poses a risk for bleeding. So let's pray that the lung has stopped bleeding, that the site can be stitched up, his vitals stay ok, that minimum fluids and blood need to be given and that he doesn't start bleeding from the procedure. Thank you again for all the prayers and support!!!

Baby steps

Aiden is only bleeding from the incision site right now. They said that he is bleeding significantly less than what he was. Once he can form a clot at that site and recover from all the blood loss his blood pressure should stabilize. Then they can stop giving him so much fluids and start him on lasix for the swelling. That is the goal for the next couple of days. Please pray that Aiden will stop bleeding and maintain his blood pressure ob his own so he can be one step closer to coming off ECMO. Thank you very much!!!

Prayers please!!!!

Aiden has had some bleeding the past couple of days. This morning we got a phone call from the NICU saying that they can't control the bleeding and they will have to do exploratory surgery to find out where it is. He is on ECMO so he already runs the risk of bleeding so doing this surgery could of caused him to bleed out. He was bleeding from his "good" lung and some muscle as well. They stitched him up and now we are waiting to see if the surgery actually worked or not. He still has some bleeding and has received a lot of blood products. They are afraid that if they can't get this bleeding under control we will lose him. So I am asking you to pray for baby Aiden. Pray that the bleeding will stop and that his vitals will stay stable and for him to be well enough to come off ECMO. Thank you so much!!!

Update on new plan

Well Unfortunatly decreasing his fluids made his blood pressure drop, decreased his urine and made ECMO circuit out. So they are having to give him more fluids again. He is still on albumin every 12 hrs. Today they are going to try and wake him up a little bit more. We are praying that it doesn't effect his blood pressure or urine output. He also had a chest x ray today and they didn't see any air in the lung with the hole so that is a good sign that it is healing.Eceryonr please pray that the doctors are headed in the right direction for Aiden's recovery. Let's pray that decreasing his paralytic doesn't effect his urine or blood pressure. Thank you all for supporting us:)

The next plan of action

Aiden has had a lot of swelling since he has been of ECMO. So the new plan of action is to give him albumin, decrease the fluids they are giving him(they had to give him fluids to keep his blood pressure up but they are going to except lower pressure now cause he does fine with it lower) and they are going to decrease his paralytic so he can have very tiny movements in hopes that these three things will bring the swelling down. Auntie Nay got to see his first movement. Now how fair is that...lol. We are going to see Aiden then we are going to pick up the keys to the Ronald McDonald house. Then we are going to go home and see the girls and pack some more stuff before we come back out here.

It's a boy!!!!

Aiden Robert Grant has made his grand entrance into the world. 5lbs 8oz, 19.86 inches. Born at 10:34am. His left lung is not functioning at all. His right lung has a hole in it. His is on ECMO right now. They will try to take him off in about 10 days. If they can't he will have his surgery while on it. He is in a medical coma because with him moving around his SATS were dropping. He coded yesterday during a chest x ray from him moving too much. Today josh went and saw him and he is stable and doing ok. Please continue praying for our little boy!!!

We have a birthdate set!!!

I am having the fetal lung test done on 6/11 in Chicago. We would know within a couple of hours how mature the lungs are at that point. We will welcome our baby into the world on 6/13/12 at 38 weeks(with the baby's cooperation of course)!!!! I see Dr. Ismail on June 5 to check on the baby and to make sure that we can still go ahead with our plan. So the countdown begins. 4 more weeks to go and although I am very nervous I am also excited to meet our new addition!!!

update

I went to the Dr. yesterday for another ultrasound.  Everything is looking pretty good. Only the baby's stomach is up in the chest cavity right now. Both kidneys are looking good now. The baby was underweight 3 wks ago but now the baby weighs 4 lbs already. I started taking the steroid shots today in attempts to mature the babys lungs as much as possible. I will have to get one more tomarrow. I already take a daily injection so whats one more. The Dr. wants to do a fetal lung test between 36-37 wks. That is done by testing amniotic fluid. Once again I can't get away from the needles. Once the Dr. sees how mature the lungs are then he will decide on when he want me to go in for the c-section. He said he will probley deliver me between 37-38 wks. He is hopeful that the hole in the diaphragm is small because only the stomach and part of the bowel has been able to pass through. I hope that is the case but anyone who knows alot about CDH knows that there are no guarantees.  A baby can have a mild case and not survive or a baby can a servere case and live. The past week or so has been a hard week for me dealing with all this.  I'm part of a support group for CDH and I follow alot of CDH stories. This past week alone I have seen 3 babies lost to this aweful birth defect!! As I get closer and closer to delivering I am realizing that our baby will be leaving the hospital to go to one of two places and I'm hoping that it is home. If I told you that funeral arrangements didn't cross my mind I would be lying but unfourtantly thats just the way it is and I'm trying to accept that. It's not fair but I know that things don't always go the way that we want them too. Thank you for following our story and listening to me vent a little bit.

This is just the beginning

 I was 15 weeks pregnant when I started having chest pain and wheezing that wasn't relieved by my inhailer.  I was having upper back pain as well. I thought it was my asthma or pneumonia. Finally Josh said it was time to go to the ER. So we went and they diagnosed me with blood clots in my lungs. They put me on injections for the rest of my pregnancy and had me follow up with a hematologist. while I was there they also did a ultrasound just to make sure everything was ok.  Three or four days later I had a appt with my OB. She said that the ultrasound showed that the babys' stomach was up higher than it should be. She said not to worry too much because it could of just been the angle of the picture.  So she refered me to a perinatologist. So I went for a ultrasound and they said that the stomach was definately displaced but I wasn't far enough along to confirm CDH. At this point I didn't know exactly what they were looking for. The ultrasound tech asked me if I knew what they were trying to confirm and i said no. He said we are looking to see if your baby has a diaphragmatic hernia. I has to ask him what that was. he said it is when the diaphragm fails to form all the way allowing organs to move into the chest cavity.  I asked him if it was repairable and he said yes with surgery after the baby is born. Since they weren't able to confim it that day we left the office and immediately started researching what a diaphragmatic hernia was.  I realized very quickly that this is very serious. As I read those words "rare birth defect", "life-threatening", "50% of babies don't survive", "babies must be put on a ventilator and tube fed", "1 in 10 babies have another birth defect", "1 in 5 babies have a heart defect" my eyes filled up with tears to the point where I could't even see.  Of course Josh was telling me not to panic yet because we didn't even know if the baby had this or not. I think Josh was in denial because we both have healthy families and we have two healthy kids.  But me, I knew something was wrong. I knew that it had to be CDH. My gut was telling me that it was CDH. We spent the next four LONG weeks waiting for my next appt so we could find out what was going on. I remember the day like it was yesterday. A day I will never forget. It was January 31st 2012. Two days after my birthday. They started the ultrasound and found the stomach and part of the bowel in the chest cavity. They could barely see any diaphragm at all. They saw that the kidneys were underdeveloped and the stomach was pushing the heart to the right side of the body.  They took measurements of everything. Then the Dr. pulled me and my mom into his office to discuss the pictures. He told us that the baby does have CDH but we have options. Either we can continue the pregancy and do nothing or we could terminate the pregancy. I went home that day and I had to discuss with Josh our "options." We decided to put it into Gods hands and contine the pregancy.  Next we had a aminiocentesis and a fetal echo. Those both came back with good results.  Next on our list was to meet with the pediatric surgeon. Basically she just explained what CDH was in very good detail (which  most of it we already knew) and how they were going to repair the hernia. She explained ECMO and what they consider the baby to be "stable" enough for surgery. She told us about the different ventilators and explained some post op stuff.  We started having monthly ultrasounds and they all showed no changes up until the last one I had about 3 weeks ago. That one showed that the bowel had come down and one of the kidneys looked really well but the other one was still lagging. Now we will see the perinatalogist every two weeks for a ultrasound and when I am close to full term he wants to check the fetal lung growth before he decides when he wants me to go in for a c-section. I know that this story is not even close to being over. Now we play the waiting game for the next couple of months for our baby to be born. As for now all we can do is pray for miracle. Pray for our baby to be one of the lucky ones.