Thursday, August 25, 2011

My sweet baby boy..............

My sweet baby boy passed away on August 23rd. He was with us for 25 days and he will be forever in our hearts.  Mommy, Daddy, and Cole love you!!!!

Wednesday, August 17, 2011

Day 20

     On Monday, August 15th, we found out that there would be no trial off ECMO. An ECMO trial is when the ventilator settings are turned up while the life support cannulas are clamped down. Aiden and the vent work together to maintain his "stats". Aiden did get a cranial ultrasound and his bleed is still considered stable. Aiden's bleed has been classified as being a Grade II, which is considered moderate. Bleeds catergorized as Grade I or II mean that the long-term damage is small because the blood remains contained within the ventricles and the additional fluid does not cause excessive pressure. The neurologist team at U of M are following Aiden closely because of his bleed. Aiden receives a cranial ultrasound every Monday, Wednesday and Friday to follow his bleed. They have found that because of his bleed the ventricles in the brain are dilated because there is no where for the bleed to go so they have discussed putting in a temporary shunt if needed after he comes off of ECMO. They stated that this may or may not happen and that usually after babies come off ECMO the bleed reabsorbs. We are hoping for this too. The cardiology team suggested that we keep Aiden on Vasopressin which helps to regulate the body's retention of water; it is released when the body is dehydrated and causes the kidneys to conserve water, thus concentrating the urine and reducing urine volume. Cardio also suggested we go up to 20 on Flolan, this medication is used to treat high blood pressure in the lungs (pulmonary arterial hypertension). Aiden is still having issues with peeing too much and peeing too little which in turn affects his sodium levels. The Endocrinology team is now working with the doctors and nurses to figure out Aiden's plan. Aiden now works with the Pediatric Surgeons, the ECMO specialists, the Endocrinologists, the Urologists, and the Cardiology team. WOW! I have a hard time remembering every little thing that each doctor tells me and now you all understand why because there are so many teams that work with Aiden daily. I am forever grateful for each and every one of these people.


     On Tuesday, August 16th, I found that Aiden was going to have a day of rest and the teams were all working together to figure out his plan. I was definitely okay with this because I had planned on my oldest son, Cole coming to Michigan for a day of fun. My dad and brother drove to Michigan with Cole. My mom was going to leave with them at the end of the night because she has been here for about a week. I spent the morning at the hospital and waited for them to arrive. When they showed up, we spent some time at the RMD House in the playroom of course. I showed Cole a bunch of games that I got for him for free from the hospital. We then went to lunch and to the Hands On Museum which was free. It's like Science Central in Fort Wayne, Indiana.  Cole had a blast! After the museum we went to the hospital so Cole could see Aiden again as well as my brother and dad could visit too. Cole was much more interested in the playdeck on the 8th floor of the hospital. He did tell Aiden he loved him and we were able to contain him to take a picture. After playing on the deck at the hospital, we headed back for dinner at the RMD. Everyone left around 8pm and I went back to the hospital for about an hour before I headed back to RMD for the night.


On Wednesday August 17th, I went up to the hospital where I stayed for the majority of the day. I met with the Pediatric Surgeon, Dr. Geiger and Dr. Ruiz. The plan was to trial off ECMO in the next day or two and then to have Aiden rest for a day or two and then do the repair surgery. This is the plan but the plan always changes because it is up to Aiden on what we do next. I also met with the Endocrinologist team to get some family history. They are looking into the renal gland or pituitary gland which could be the culprit for the peeing problems that Aiden has been having. Sodium seems to be the biggest concern and endocrinology has stated that they are leaning more towards the pituitary gland and thinking that Aiden may be in need of supplements as a short-term or long-term plan to maintain his sodium levels. I was able to help change his diaper again, take his temperature throughout the day, rub his head, hold his hand and hum to him like I do every day. Aiden loves when I hum to him! He always seems to settle down when I am by his side. He also loves his mommy's breastmilk. He receives some of my milk on a long q-tip that I put on his lips and on the inside of his mouth. He sucks on his bottom lip when I do this.

Thanks for checking in on Aiden. Thank you for all your support and prayers. Continue to keep praying for Aiden. He has a tough rode ahead of him and this is only the beginning. Pray that we figure out his urine issues. Pray that his bleed remains stable. Pray that the bleed reabsorbs itself and the shunt is not needed. Pray the his PPHN remains in a good place. Pray that this little guy comes off ECMO with no problems. Pray that his repair surgery is successful.



Sunday, August 14, 2011

Day 17

On Tuesday, Aiden trialed for one hour and thirty minutes. He did well with some moderate PPHN. The Pediatric Surgeon, Dr. Ehrlich would like Aiden to trial one more time to make sure he is ultimately ready to come off ECMO. They are thinking that in the next 2-3 days that going to take Aiden off ECMO and do the repair surgery after a day or two of rest. Or in the next 2-3 days they will do the surgery on ECMO even if he is ready to come off ECMO because the surgery itself stresses out babies and he could ultimately need to go back on ECMO and this would be devastating.

On Wednesday, I was able to participate in some of Aiden's care. I have been taking his temperature every hour when I am in his room. I changed his diaper once. That was very hard and scary because there are lines everywhere and I didn't want to cause him pain or pull anything out. He used a pacifier Wednesday night and he totally loved it. Thanks Carrie for suggesting this. Carrie, who has become a close friend through this CDH journey, came to visit with Aiden and I on Wednesday. Carrie was in the same boat four years ago with her son, Noah. Carrie has been extremely helpful because she definitely knows the ropes. If I have a question or a concern I know I can call Carrie and she usually knows the answer or knows what to say. Thanks Carrie!

On Thursday 8/11, we were told that Aiden would again trial on Friday 8/12. During the trial he would be at 15 on Flolan and be put back on Nitric. If we found that his pulmonary hypertension (PPHN) was good then they would possibly cut away from the ECMO machine and do his repair surgery. If his PPHN was moderate they would possibly do the repair surgery on ECMO. Aiden's gases have been really good this week which is great. Aiden has been having trouble with keeping his blood pressure (BP) up when he is turned which happens every four hours or when someone touches him too much or it is too noisy in the room. CDH babies are sensitive. Aiden has been opening his eyes a lot in the AM. I now have this on video and will post in the future.

On Friday 8/12, I was able to brush his hair and put lotion on parts of his body. He enjoyed it for a little bit. The nurses and doctors are pleased with the breaths they are getting on both lungs at this time. Gases are still good. Trial lasted four hours today. At the very end of the trial Aiden started to drop his BP and was having trouble blowing off CO2. After giving his a bolus of Albumin (?), Aiden was where he needed to be. Aiden has been so good at peeing that he ultimately is causing his organs to become dry which in turn lowers his BP. He has trouble keeping fluids inside. We are now back to the drawing boards of figuring out how to keep him peeing but not as much as he is now. We are now going to trial again either Sunday or Monday after talking with the Peds Urologists about his peeing issues.

On Saturday 8/13, the Peds Urologists came by to figure out Aiden's peeing problem. I have heard that peeing too much is better than not peeing enough. I hope that is true. The Urologists found that Aiden has too much sodium in his body which is causing him to pee off so much. They will check their records and figure out a game plan on how to get this solved. They stated that Aiden's sodium intake is high but it is not dangerous. Thank God! They are now trying to figure out if it is some of the medicines he is getting that is putting his sodium intake at a high level or if it is something else. Urologists stated that the kidneys look good and that they are not worried about their shape or function. Thank God again! Last night when I went back to check on Aiden before bed the Urologists had ordered a saline based solution with less sodium to see if this will help out our little guy.

On Sunday 8/14, I called the nurse in the morning as usual to check on my baby. She stated that he is still peeing a lot but that the saline solution had started to work so we are all hoping that with time this will be his solution. They are also testing some of his stool because he has been pooping more than usual the last two days and they want to take precautions to make sure there is not an infection. Pray there is no infection in his little boy. I will update more later. Thanks for all your support and prayers.


Tuesday, August 9, 2011

Day 12 (Tuesday August 9th)

Greg and I arrived early to the hospital this morning. We were told that Aiden would most likely have his ECHO( a sonogram of the heart ). They would also then start the ECMO trial today. At around 11am, Aiden received his ECHO and they started to wean him off ECMO at 11:31am. He lasted for an hour and a half and they decided to end his trial because his pulmonary hypertension (PPHN) was bad. They would like to up the dosage on his Flolan (keeps PPHN down). Aiden receives Flolan every twelve hours and it takes a while to up the dosage. They will trial again in a couple of day but no word yet on a date. Originally before we started the trial we met with the Pediatric Surgeon who was working this week, Dr. Ehrlich. He stated that he would like to do the repair surgery on ECMO. They are benefits and risks to do the repair surgery on ECMO. He did not want to take Aiden off ECMO during surgery even if he could last because he wants Aiden to be well supported and be able to rest after surgery. So we knew whether he did good or bad during the ECMO trial that surgery would most likely happen this week or next. The surgeon would like Aiden to be ready to come off ECMO (but still be on the machine itself) before they do the surgery because this will give him a better chance of healing. To put  him back on ECMO after the repair surgery would be a very bad thing. He has been bleeding some out of his colostomy procedure because when babies are on ECMO they bleed because they are on Heparin which thins the blood. When there is an opening on the body the blood finds some place to go and this happens to be at the colostomy site.  The techs did an x-ray before I left the hospital today and no official word came back about the x-ray. One of the Peds Surgeons stopped by tonight and was not concerned with the bleeding at the colostomy site because it has put out some clots which means that the bleeding has slowed down tremendously.   The surgeons stated that Aiden didn't trial well today because he is too "dry." He is peeing too much making his insides dry. Peeing is good for these babies because they are so puffy from all the meds but he is a "champ" when it comes to peeing. At this time he doesn't have enough support (liquids) to keep the medicine inside his litttle body. The Pediatric Cardiology team has now become involved with Aiden to help figure out his pulmonary hypertension (PPHN) issues. The more people involved the better (I hope). 
Have I told you how much I hate pulmonary hypertension? This seems to be Aiden's biggest issues amongst many others that is truly keeping him from coming off ECMO and getting his repair completed. We are actually in a study now to see why pulmonary hypertension affects CDH babies so much. I hope they come closer to an answer to help more babies like Aiden. Keep the prayers coming for Aiden.

Please keep the Hall family in your thoughts and prayers tonight. Their daughter has lost their battle with CDH. The Hall family has been so kind and helpful to our family. I am heartbroken for them........

Day 11 (Monday August 8th)

Today has been a busy day for both Greg and I. Greg has been studying for his two tests that will finish out his last semester at school. He will then officially graduate with his Accounting degree. The finals were put on hold last week due to Aiden becoming very unstable.Thank you IPFW! I have been making tons of phone calls for insurance for Aiden, filling out paperwork and setting up payment plans for bills we have received so far. And to think that we haven't received a single bill yet from the day Aiden was born or from my scary hysterotomy procedure. Aiden has been stable today. He has had some dips in his blood pressure but this seems to happen when there is too much noise in the room or when the nurses turn him and handle him too much. We do not have the official word on his cranial ultrasound. We were told by his nurse that there were no changes according to her report. We are still waiting to hear the offiical report from the doctors. One of Aiden's goal's to trial off ECMO again was to get to 10 on Flolan. He will officially be to 10 as of 9pm tonight. They complete an ECHO tomorrow sometime (waiting on the time for this). While they do this, they will then trial to see how his pulmonary hypertension is during this. The reason he had to go back on ECMO was because he had bad pulmonary hypertension and at that was not on Flolan because the doctors were not given enough time to start this medication. We are now hoping that with him back on and being prepped for the trial that he will make it off ECMO again and stay off. One of the side effects of Flolan is that some babies get the "shakes". Aiden shakes throughout the day and night and it is heartbreaking because to parents it looks like he is cold but that is not the reason. He also has been making a lot of faces more like he grimaces when he is agitated. I have talked with the doctors and they have decided to up his morphine to see if he stops. Today he did seem to grimace less. Hoping we found the cure for his grimaces.

Sunday, August 7, 2011

Day 9

Today was a wonderful day because I was able to see both of my sons, Cole and Aiden. I woke up and spent the morning with Aiden and then came back to Ronald McDonald House to meet my sister, my brother, my dad and Cole. My mom was already there. I greeted everyone at the door and he ran to me and gave me tons of kisses and hugs. He was instantly attached to my side. Anytime we went to a different room he asked me to come along. I was definitely exhausted by the end of the day and night but it was totally worth it. I did feel guilty at the end of the visit that I was not able to be in two places at once but Cole really needed me and I needed him too. I don't think I stopped smiling until the end of the night ( I will get to that story in a minute). Cole immediately was drawn to the play room at the Ronald Mcdonald House and he loved it. He looked so different after not seeing him for 9 days. We then walked over to U of M where he was able to meet his brother, Aiden. He told his brother he loved him and sang "Twinkle Twinkle Little Star" to him. He was fascinated with the different machines and the babies that were crying. We told him that Aiden has some "ouchies" and that the machines were making them better. He was also fascinated with my "ouchies" from my hysterotomy procedure. We then showed him the play deck on the 8th floor of the hospital and he was in heaven. They have tons of playground equipment and toys. I stayed around the hospital for an hour to be with Aiden and they went back to play. I met the family back at the RMD and ate dinner. We played some more and then they left around 8:30pm. I thought that I would be a big "cry baby" when he left but I was strong. I received tons of kisses and hugs. My favorite part was holding his hand all day and just hearing him call me "momma". I missed that so much! I am hoping to see him again the following weekend. After they left, Greg arrived and we went back to the hospital. We found out that Aiden was going to be moving into a new room so that all of the babies on ECMO would be together. We were not a fan of this because the space we had in our original room was huge and we could sit by his bed all day long and not feel cramped. Greg and I were very upset and frustrated with the lack of space Aiden had. He was also placed next to a baby that would not stop crying and he was extremely agitated and they had to put his top on to drown out the noise. We went to bed last night and were determined to talk to the charge nurse, peds doctors, the social worker and anyone else we could to get this figured out. Please pray that Aiden stays stable and boring!!

Friday, August 5, 2011

Day 8

Today has been a boring day and I am so thankful for this. Borings days=good days. Aiden has peed of tons liquid and looks like a perfect normal little baby. He has his blankets in his isolette along with a new bow that is red and says "LOVE" on it. One of our primary nurses, Rachel already has a special bond with Aiden and makes sure he is looking handsome every day. She is great! She has encouraged us to kiss his head when we see him and allows us to cradle his head and hold his hand. We are encouraged to talk to him while doing his mouth care (wiping his lips with sterile water) so that he associates anything oral to be pleasant and not scary.  I hope this works. CDH babies have oral aversions and we are hoping Aiden isn't one of them. Aiden also has a special bond with another nurse, Kemmie and she just adores him. She was unable to be with him yesterday but checked on him three different times during her 12 hour shift.  

The doctors today have told us that Aiden's bleed is still stable. They will not do another ultrasound again until early Monday morning. They are currently weaning his Dopamine down and increasing his Flolan (medicine for pulmonary hypertension). He is currently at 3 on his Flolan and they will increase it every 12 hours which will take until Monday evening. They are also weaning down on the ECMO support. All of this is being done to prepare for the ECHO (heart scan) that they will do on Tuesday to see if he is ready for another ECMO trial. Aiden went off ECMO the first time because of the bleed. He was not ready for this and was not able to hold his own so we decided that it would be best to go back to ECMO to give him a fighting chance to survive and pray that his bleed would not get worse. We are hoping to have lots of boring days ahead of us.

My dad is bringing Cole to Ann Arbor tomorrow along with my sister and brother. I cannot wait to see Cole. I have not seen him in 8 days. I miss him terribly! I know he is being well taken care of but I know he misses my hugs and kisses as only a mom can give him. Last night, he asked his daddy to hold him. Of course he did but I wished that was me. He has been opening up his envelopes that I made for him each night and he gets super excited. I put little notes inside with candy, stickers and crayons. He then makes me a picture. How do other CDH mothers handle being away from their children for so long? I hope I can be strong with not being with him and that it doesn't affect him and our close relationship.

Please continue to keep Aiden in your prayers. He needs them continously. He is my little scrunchie face and I love him so much. He scrunches his nose and lips and eyes when I talk to him. I am hoping that means he likes when I talk to him or sing to him and that he isn't telling me to be quiet. LOL!

Thank you for all your support and prayers as Aiden is needing them every day and night.

Thursday, August 4, 2011

Day 7

Aiden is stable at this time. His cranial ultrasound came back stable which means the bleed hasn't gotten any bigger. Aiden has a new nurse today and I have asked her to become on of our primaries. I love her! We now have one day primary and one night primary and are actively searching for more. It is good to find a nurse that works well with your baby as well as Greg and I. They get to know your baby and what his likes dislikes are. Greg and I feel most comfortable with Rachel during the day and Becky at night but need to look for one more day and one more night nurse to feel comfortable leaving his bedside. We have run into one nurse who we have already reported and hope to not run into this again. The staff at U of M are amazing! Ana one of the pediatric surgeons is truly amazing and was at Aiden's bedside for hours upon hours. I have met so many wonderful nurses and ECMO staff and feel blessed to have made the decision to come to University of Michigan.
Today has been so exciting. Greg and I were able to become more involved with Aiden. Aiden is moved every four hours to a new position. I was able to touch his back and be a part of the move. I know this doesn't sound like much but any kind of touch is truly amazing. We were encouraged to kiss his head and wipe his lips with sterile water as well. I cradle his head when I can and hold his hand as well. Sometimes he grips my hand but even to just touch him is wonderful. He is very sensitive to touch and we have to be careful not to overstimulate him. We took tons of pictures and videos today. Will post these soon. He has a bow around his neck like he is a present and holds his elephant lovie when he can. He looks like the spitting image of Cole.
Continue to keep prayers coming because Aiden is in desperate need.

Thanks:)

Day 6

I am updating the blog on behalf of Greg and Leslie as the majority of their time is devoted to Aiden right now. The past few days have been a roller coaster to say the least. On Monday they discovered that Aiden has a slight bleed in his brain. At first the bleed was not of huge concern and can be a common complication while on ECMO due to the amount of Heparin (blood thinning agent) that is needed to keep the circuit from clotting, but none the less, something that needs to monitored carefully. Early Tuesday morning they discovered that he had a pneumothorax (hole) in his right lung. They inserted a chest tube to drain off the fluid and allow the lung to reinflate. The lung will reseal itself, but the chest tube will stay for awhile to continue to drain fluid. Despite lowering the heparin, the brain bleed had progressed and it was in Aiden's best interest to come off of ECMO before it progressed any further. They were hopeful that he was ready to hold his own on the conventional vent. Aiden did very well for the first several hours but by Wednesday morning, he was struggling once again. They moved him to the oscillator, a high frequency ventilator, and he continued to have issues with blood pressure and oxygen saturations. After meeting with the head neuro surgeon and pediatric surgeons, they came to some conclusions:
1. Aiden's case of CDH is worse than previously thought
2. His pulmonary hypertension is severe
3. He has a peripheral anus (basically meaning the colon does not extend to the outside of the body) this caused the meconium to push up onto the other organs. He does have a colostomy at this time until this repair can be made. No word yet on when this will take place.
4. The diaphragm repair is not an option at this time as he is not stable enough for surgery. Although the repair itself will place the organs in the correct place and let the lung expand, it will not necessarily help his current situation so it is more important that he is stable enough to handle surgery.
5. He has a level 2 bleed in his brain (with time they hope this will be reabsorbed with no lasting issues, time will tell)
Due to the severe pulmonary hypertension, Aiden coded for several minutes this afternoon. Dr's were able to stabilize him once again and the decision was made to put him back on ECMO. The cannulas hadn't been removed since yesterday, so he was hooked back up quickly. Since this afternoon, he has been stable on ECMO and the Dr's are hoping that the next few days he can rest. As long as the bleed remains stable and there are no further complications, they will attempt a trial again in a few days and will use medication to control the pulmonary hypertension. Greg and Leslie were encouraged to get some rest and sleep tonight after a very dramatic few days. The dr's have said he is a very unique but severe case, but they are hoping for a few quiet days and another trial off ECMO in the days to come.
Please keep Aiden, Greg and Leslie in your prayers. The last few days have been very touch and go as will the next 24 to 48 hours  as well....
Carrie