Aiden had surgery today and all went well. Greg and I were able to sit with him this morning before surgery. The NICU nurse said he had a "great night". We were so pleased! The doctor sat down with us after surgery and was happy with the outcome. He stated that he was very stable during the surgery and that because of this they would like to slowly start weaning him off of ECMO and see how he handles it. I was surprised that he suggested it so soon and we know that things change every hour with CDH babies. We will continue to stay positive and hope that the weaning is started sometime this coming weekend.
Greg had to leave this morning in order to complete projects and study for his final exams on Thursday of this coming week. He will take his last tests in his last two classes on Thursday. It was very hard for him to leave today and he was very emotional as any parent would be. He has been such a rock for me and I too did not want him to leave. I am counting down the days for him to return. My mom came to U of M today along with my sister. Lindsay got to meet Aiden for the first time today and she was very helpful. I have not really walked around much due to my pain and they pushed me a little bit and I was able to make it from my room to the NICU today. Wow! I was exhausted by the time I made it to see Aiden.
During our visit, I found that the nurses put his elephant lovie in his hands. He is holding it! I love it! I was also able to give him mouth care. I put my breast milk on a long q-tip and put it over his lips and on the inside of his lips. He seemed to like it. It was another thing that I can start to do for him and feel like I am actually taking care of him. I will post pictures soon. My mom and sister are now grocery shopping for me to take items to the Ronald McDonald House. My sister will visit one more time with Aiden and then she is leaving. Thanks Lindsay for coming and taking such wonderful pictures and videos. She bought me the most beautiful necklace that contains little baby feet, Aiden's birthstone and Cole's birthstone. Absolutely wonderful. I may post later after my night visit but if not will post tomorrow. Thanks again for all your support and prayers. Please keep them coming!
Sunday, July 31, 2011
Saturday July 30th
Greg and I got some sleep last night after a long day yesterday. Greg had to stay at the Ronald McDonald House to keep our room which we just got and I am still at the hospital. I got to take a shower today! I was super excited but scared to see my incision from my surgery. There are just stitches and not staples which I thought was originally there. I have been sore all day today and my throat is super sore and my voice is hoarse from being intubated. Still moving slowly around and I am not sure how I am going to move around without my best friend: my wheelchair. I will discharged sometime tomorrow but have not been given a time.
We were with Aiden three times today and the last visit was my most memorable one because I was able to hold his hand and he held my hand back for a little bit. I did another cradle of his head and it felt so good to feel so close to him in some way or another. Aiden had a pretty okay day. We learned today that he definitely does not like to move positions. He prefers to lay on his back and so far he is most comfortable in this position. We put up some special things in his area of the NICU today: blankets, rosary, elephant lovie, etc. It is now "his" space. The NICU and ECMO staff are amazing at U of M. They have made Greg and I feel so much better after each visit. They are so kind and caring and really care about Aiden. Aiden is currently receiving Morphine, Dopamine, Ativan, and Hydrocortisone. They did double his Morphine today because he doesn't like to be disturbed too much as he is sensitive to touch. Most CDH babies do not like a lot of stimulation which is why Greg and I do "cradle" holds only. The NICU team stated that "Aiden is in charge" and they follow his cues every day. They do not know when they will do the repair and will wait until he is more stable and hopefully he is off of ECMO before the repair. Aiden has surgery tomorrow in the morning and we will update you after we know the outcome. Surgery is around 8am and should last an hour or two.
My mom is coming back to Ann Arbor to stay with me while Greg goes home to finish out his last week of classes. Greg's finals are on Thursday. He will officially graduate with his Bachelors Degree. YEAH Greg:) Cole is doing well hanging with his Mimi, Papa, Uncle Luke and Aunt Lindsay. He received his first letter from me today and it was an envelope full of Toy Story markers. He made Greg and I pictures today. A friend of mine, Carrie Baker gave me the idea of making letters for Cole each day and put into a basket that he could pick out of each day. Inside each of them were assortment of various items that he would appreciate like markers, crayons, stickers, candy. I also put in a quick note from me since I will not get to be with him every day. I absolutely loved the idea and made about 60 letters for him to open. He opened his first one today with my mom and he immediately decided I needed a picture and so did his dad with his new Toy Story markers. I cannot wait to see my picture tomorrow.
I will update you all tomorrow night once we know how surgery went. Thanks for all your support and prayers:)
We were with Aiden three times today and the last visit was my most memorable one because I was able to hold his hand and he held my hand back for a little bit. I did another cradle of his head and it felt so good to feel so close to him in some way or another. Aiden had a pretty okay day. We learned today that he definitely does not like to move positions. He prefers to lay on his back and so far he is most comfortable in this position. We put up some special things in his area of the NICU today: blankets, rosary, elephant lovie, etc. It is now "his" space. The NICU and ECMO staff are amazing at U of M. They have made Greg and I feel so much better after each visit. They are so kind and caring and really care about Aiden. Aiden is currently receiving Morphine, Dopamine, Ativan, and Hydrocortisone. They did double his Morphine today because he doesn't like to be disturbed too much as he is sensitive to touch. Most CDH babies do not like a lot of stimulation which is why Greg and I do "cradle" holds only. The NICU team stated that "Aiden is in charge" and they follow his cues every day. They do not know when they will do the repair and will wait until he is more stable and hopefully he is off of ECMO before the repair. Aiden has surgery tomorrow in the morning and we will update you after we know the outcome. Surgery is around 8am and should last an hour or two.
My mom is coming back to Ann Arbor to stay with me while Greg goes home to finish out his last week of classes. Greg's finals are on Thursday. He will officially graduate with his Bachelors Degree. YEAH Greg:) Cole is doing well hanging with his Mimi, Papa, Uncle Luke and Aunt Lindsay. He received his first letter from me today and it was an envelope full of Toy Story markers. He made Greg and I pictures today. A friend of mine, Carrie Baker gave me the idea of making letters for Cole each day and put into a basket that he could pick out of each day. Inside each of them were assortment of various items that he would appreciate like markers, crayons, stickers, candy. I also put in a quick note from me since I will not get to be with him every day. I absolutely loved the idea and made about 60 letters for him to open. He opened his first one today with my mom and he immediately decided I needed a picture and so did his dad with his new Toy Story markers. I cannot wait to see my picture tomorrow.
I will update you all tomorrow night once we know how surgery went. Thanks for all your support and prayers:)
Saturday, July 30, 2011
Baby Aiden is here
After a fun and relaxing night with the family, I woke up the next morning on Thursday July 28th with my water breaking. Greg and I were in the car thirty minutes later and on our way to Ann Arbor. We were full of nerves while driving up and thankfully I did not start to contract until we were 45 minutes away from the hospital. After checking in at the hospital I found that I was about 3 cm dilated but my contractions were not strong so they started me on Pitocin. Not fun! It took many hours to get to 7cm and then 30 minutes later I was at 10 cm and ready to push. They wheeled me into the OR because they need more room. About 15 people were in the room doing various things for me and the baby. After about 8 pushes, Aiden James Reed arrived at 8:23pm weighing 6 pounds and 8 ounces and 20 inches in length. Greg and I got a quick glimpse of him and he was immediately whisked away to the Pediatric team. Aiden did pretty well for the first 2 hours of his life on a ventilator but after struggling they decided to put him on the ECMO machine.
I had some complications as well after the birth. They could not locate all of the placenta and the OB team went through 4 different OB doctors trying to find it. They then decided that the best way to get it out would be a D & C. They tried that option and that did not work. The team of OB doctors then talked with me about my options on how to locate the rest of the placenta and they were not good choices:
1) Chemotherapy 2) a procedure much like a C-section to search for the missing placenta 3) Hysterectomy. None of these choices were one that I wanted to attempt but I went with #2 hoping that #3 would not be the option that would happen. They put me to sleep and after 3 hours of surgery they were able to find the missing tissue and close me up. I was a mess and so was Greg. This is definitley not something we wanted to be dealing with on top of everything that we were already dealing with with Aiden.
After my surgery, I was in recovery until 3 am. My parents rushed up to Michigan and were able to see me in recovery and see Aiden the next morning. Today has been an emotional day because I have had lots of pain due to my surgery and have felt dizzy and nauseated throughout the day. Greg has been with Aiden off and on throughout the day and I finally was able to see him in the afternoon. I was only able to stay with him for a short amount of time due to feeling nauseated. He is so beautiful! The spitting image of Cole at birth and I have lots of pictures that Greg and I took today but will post tomorrow. Greg and I both went back after we ate dinner. We stayed with him for over 2 hours and met some of the wonderful NICU team. They have been so kind and caring. Aiden is doing pretty good on ECMO but has started to look very puffy. This is pretty typical because of all the fluids and medicine they have him on. It is very overwhelming when you see him because of all the wires, tubes and machines but I know this is what he needs to keep going. The ECMO nurse was cleaning his ECMO cannula tubing tonight and he was making some funny faces while she did this. It was so exciting to see this since he is heavily sedated so that he doesn't move around because of all the wires. Greg and I cradle the top of his head when we see him and talk to him a lot since we cannot hold himbecause too much stimulate would be bad. I cannot wait to him tomorrow. He is just too adorable!
Good news: Greg and I were able to get into the Ronald McDonald House today. Bad news: Someone has to stay there each night or risk losing our room so I am staying at the hospital tonight by myself and Greg is at RMD House. Good news: I met a woman tonight that I have been following her blog since March when her daughter was born with CDH (not known until after birth. Her daughter is actually in the same NICU room as Aiden. I was happy to see her and I know she will be so helpful to our family.
Cole is also doing well as he has been busy with going to the babysitter, playing with his friends and spending the night with Mimi and Uncle Luke. He has been doing so well with his potty training and hope that it continues to go well. Lindsay, Luke, my mom and dad have been so helpful throughout all of this and I cannot thank them enough. Thank you to all our friends and family members for prayers and support through all of this. Please keep the prayers coming as Aiden really needs them right now!
I had some complications as well after the birth. They could not locate all of the placenta and the OB team went through 4 different OB doctors trying to find it. They then decided that the best way to get it out would be a D & C. They tried that option and that did not work. The team of OB doctors then talked with me about my options on how to locate the rest of the placenta and they were not good choices:
1) Chemotherapy 2) a procedure much like a C-section to search for the missing placenta 3) Hysterectomy. None of these choices were one that I wanted to attempt but I went with #2 hoping that #3 would not be the option that would happen. They put me to sleep and after 3 hours of surgery they were able to find the missing tissue and close me up. I was a mess and so was Greg. This is definitley not something we wanted to be dealing with on top of everything that we were already dealing with with Aiden.
After my surgery, I was in recovery until 3 am. My parents rushed up to Michigan and were able to see me in recovery and see Aiden the next morning. Today has been an emotional day because I have had lots of pain due to my surgery and have felt dizzy and nauseated throughout the day. Greg has been with Aiden off and on throughout the day and I finally was able to see him in the afternoon. I was only able to stay with him for a short amount of time due to feeling nauseated. He is so beautiful! The spitting image of Cole at birth and I have lots of pictures that Greg and I took today but will post tomorrow. Greg and I both went back after we ate dinner. We stayed with him for over 2 hours and met some of the wonderful NICU team. They have been so kind and caring. Aiden is doing pretty good on ECMO but has started to look very puffy. This is pretty typical because of all the fluids and medicine they have him on. It is very overwhelming when you see him because of all the wires, tubes and machines but I know this is what he needs to keep going. The ECMO nurse was cleaning his ECMO cannula tubing tonight and he was making some funny faces while she did this. It was so exciting to see this since he is heavily sedated so that he doesn't move around because of all the wires. Greg and I cradle the top of his head when we see him and talk to him a lot since we cannot hold himbecause too much stimulate would be bad. I cannot wait to him tomorrow. He is just too adorable!
Good news: Greg and I were able to get into the Ronald McDonald House today. Bad news: Someone has to stay there each night or risk losing our room so I am staying at the hospital tonight by myself and Greg is at RMD House. Good news: I met a woman tonight that I have been following her blog since March when her daughter was born with CDH (not known until after birth. Her daughter is actually in the same NICU room as Aiden. I was happy to see her and I know she will be so helpful to our family.
Cole is also doing well as he has been busy with going to the babysitter, playing with his friends and spending the night with Mimi and Uncle Luke. He has been doing so well with his potty training and hope that it continues to go well. Lindsay, Luke, my mom and dad have been so helpful throughout all of this and I cannot thank them enough. Thank you to all our friends and family members for prayers and support through all of this. Please keep the prayers coming as Aiden really needs them right now!
Wednesday, July 27, 2011
Latest news
I went to my doctor's appointment today. I was told that I am still less than 2 centimeters dilated. This is great news because if I was found to be 2 centimeters today my doctor was going to make me go to University of Michigan. Next week will be my last appointment with my doctor because he no longer feels comfortable with me staying in Fort Wayne so far from Michigan so close to my due date. My next doctor appointment is scheduled for Tuesday, August 2nd. I was told more than likely that Thursday August 4th or Friday August 5th would be the day he would sent me up to University of Michigan. The overall appointment went well for both baby and I.
Today I am faced with the fact that I am not able to have an actual plan for this birth. Not being able to have a final plan is hard for me because I am a big "planner". I am hoping to drive up on Friday August 5th because Greg has his finals on August 4th and then he will officially be done with school. I am trying to figure out the planning for Cole to come visit the weekend of August 6th and August 7th and then find him something to do over the weekend so he isn't stuck in a hotel room and bored to death. Any suggestions anyone? I currently have a reservation with the MedInn (hotel inside the hospital) to start on 7/29. I now need to move this reservation to Thursday August 4th and then possibly move it again if I don't leave until Auguat 5th. I also am on the waiting list starting August 4th for Ronald McDonald House. I hope that on the day I drive to Michigan that I can get right into Ronald McDonald House and avoid staying at the MedInn. It would be nice to be settled into one place rather than move into MedInn for a day or two and then get a call that I can now move into Ronald McDonald House. Pray that when I drive to Michigan they will give me good news that there will be an opening once I make it into town.
It really still hasn't hit me yet that I am going to have a new baby soon. I don't think it will hit me until I am in actual labor. It hasn't hit me yet that I am going to be away from home especially Cole, Greg and all of the comforts of just being at home. I think on the drive to Michigan I may need to bring lots of kleenex.
I will keep you updated more often as the days dwindle down. Thanks for keeping our family in our thoughts and prayers as will definitley need them even more once the baby is here.
Today I am faced with the fact that I am not able to have an actual plan for this birth. Not being able to have a final plan is hard for me because I am a big "planner". I am hoping to drive up on Friday August 5th because Greg has his finals on August 4th and then he will officially be done with school. I am trying to figure out the planning for Cole to come visit the weekend of August 6th and August 7th and then find him something to do over the weekend so he isn't stuck in a hotel room and bored to death. Any suggestions anyone? I currently have a reservation with the MedInn (hotel inside the hospital) to start on 7/29. I now need to move this reservation to Thursday August 4th and then possibly move it again if I don't leave until Auguat 5th. I also am on the waiting list starting August 4th for Ronald McDonald House. I hope that on the day I drive to Michigan that I can get right into Ronald McDonald House and avoid staying at the MedInn. It would be nice to be settled into one place rather than move into MedInn for a day or two and then get a call that I can now move into Ronald McDonald House. Pray that when I drive to Michigan they will give me good news that there will be an opening once I make it into town.
It really still hasn't hit me yet that I am going to have a new baby soon. I don't think it will hit me until I am in actual labor. It hasn't hit me yet that I am going to be away from home especially Cole, Greg and all of the comforts of just being at home. I think on the drive to Michigan I may need to bring lots of kleenex.
I will keep you updated more often as the days dwindle down. Thanks for keeping our family in our thoughts and prayers as will definitley need them even more once the baby is here.
Thursday, July 14, 2011
Time is running out..................
Today I am 35 weeks. I went to the doctor's office today and found that I am 1 cm dilated and 60% effaced. The doctor stated that this is pretty typical for a 2nd pregnancy and that he wasn't extremely worried. He did however give me a steroid shot and I will get another one tomorrow and one more next week more than likely. I am seeing him every 6 days now rather than 7. My blood pressure was high for the first time for me and the doctor believes it is from a new med that they put me on. He did not seem concerned. My fluid is high but not high enough to be "drained". He stated that when I return next week to his office that if I am 2 centimeters and around 80% effaced that he will want me to make my way towards the University of Michigan. Baby Aiden is around 5.5 pounds and doing great with practicing his breathing. Ultrasound is as normal as can be for a CDH baby. After the appointment, I came home and immediately panicked and packed everything I needed just in case. Then I called the Perinatal Nurse Coordinator, Jeannie and spoke with her about everything which made me feel better. She has been a lifesaver through all of this. Thank you Carrie & Brian Baker for introducing me to Jeannie and the wonderful staff at U of M.
I did however already meet with my doctor this week on Monday evening in the ER. I was having tons of Braxton Hicks which they stated that past 34 weeks they pretty much call them "real" contractions. They were about 15 minutes apart and had lasted several hours even after drinking tons of water and putting my feet up. They told me to come into the ER due to the fact that I am not a "typical" case because Baby Aiden has CDH and I am not delivering in town. He ordered a shot to help stop the contractions and boy did that hurt. They did end up stopping and I was able to go home after a couple of hours with a new med (Procardia). I have not had consistent contractions since Monday until last night which only lasted for an hour. I am praying I make it to 37 weeks which I then become considered full-term.
This past weekend was extremely busy. I went to University of Michigan on Thursday July 7th. I had a Fetal MRI, an OB appointment, an ultrasound, a Fetal ECHO, and a meeting with the Pediatric Surgeon. I traveled to Michigan with my mother because Greg is in the middle of summer school and we did not want him to miss any classes. He will be graduating in August with his Bachelors Degree in Accounting. YEAH GREG! At our meeting with Dr. M (Pediatric Surgeon) we discussed numbers and the delivery plan. Last time we were in Michigan we received "puzzling" numbers because the LHR was 1.6 and the lung volume did not match up...it was 6.12. Usually the lung volume with an LHR of 1.6 should have been a 12. The doctor stated that this usually means that the readings were not accurate from the Fetal MRI or there was an organ that was up that they couldn't make out. Today we found out the the 1.6 LHR was never our true number and that it was more of a 1.09. Still decent but not great which means that the ECMO will definitely be primed and ready for the baby if he needs it. It definitely wasn't news we wanted to hear but knowing that we still have a 60%-65% for survival for baby is promising. We also found out that the liver is still down and the doctor stated that at this point nothing else should be moving into the chest cavity which is great news. Having the liver up is not a good chance for survival for CDH babies. I was sad leaving U of M last week but I am staying positive in knowing that Baby Aiden is a fighter and we will definitely be bringing him home.
On Friday July 8th following my Michigan trip, Carrie and Brian Baker held a benefit for Baby Aiden at The Shiloh. It was a great success and there were over 350-400 people who showed up to support our family. There was a silent auction, raffles, Corn Hole tournament, Texas Hold'em tournament, childrens' games, dinner provided by Texas Roadhouse, and a cash bar. Greg, Cole, and myself cannot thank everyone enough especially the Bakers, Natalie Zehr, The Shiloh, Texas Roadhouse (Bryan & Matt), volunteers, family and friends for the generous donations and time that everyone helped make the benefit so successful. Texas Roadhouse has also dedicated a night on Thursday July 21st to give our famly 10% of their generated food sales that night as a donation. Come on out on that night and get some yummy food. We are so truly blessed to have such wonderful people in our lives.
I am mentally trying to prepare leaving Greg and Cole when I go to Michigan. Greg, Cole, and my immediate family will be with me during the birth of Baby Aiden. Greg will stay with me as much as he can and bring Cole to see me but not seeing both of them everyday as I do now will be extrhemely emotional. I am trying to stay positive but worry about the effects it may take on both Greg and Cole. I hope Cole knows how much I love and miss him and we don't loose the bond that we built up over the last 3 years. I hope that Greg can handle working full-time, finishing school and becoming a single dad until I can come home with the baby. I worry a lot! I worry for Greg, for Cole, for Baby Aiden especially, about bills, about returning to work, missing my family, the list goes on and on. I hope that I will be able to focus on the right things at the right times. Please keep our family in your thoughts and prayers. I will try to keep the blog updated more as we get closer and closer to Baby Aiden coming into the world.
Thanks for all your support and prayers,
Leslie, Greg, Cole and Baby Aiden (due August 2011)
I did however already meet with my doctor this week on Monday evening in the ER. I was having tons of Braxton Hicks which they stated that past 34 weeks they pretty much call them "real" contractions. They were about 15 minutes apart and had lasted several hours even after drinking tons of water and putting my feet up. They told me to come into the ER due to the fact that I am not a "typical" case because Baby Aiden has CDH and I am not delivering in town. He ordered a shot to help stop the contractions and boy did that hurt. They did end up stopping and I was able to go home after a couple of hours with a new med (Procardia). I have not had consistent contractions since Monday until last night which only lasted for an hour. I am praying I make it to 37 weeks which I then become considered full-term.
This past weekend was extremely busy. I went to University of Michigan on Thursday July 7th. I had a Fetal MRI, an OB appointment, an ultrasound, a Fetal ECHO, and a meeting with the Pediatric Surgeon. I traveled to Michigan with my mother because Greg is in the middle of summer school and we did not want him to miss any classes. He will be graduating in August with his Bachelors Degree in Accounting. YEAH GREG! At our meeting with Dr. M (Pediatric Surgeon) we discussed numbers and the delivery plan. Last time we were in Michigan we received "puzzling" numbers because the LHR was 1.6 and the lung volume did not match up...it was 6.12. Usually the lung volume with an LHR of 1.6 should have been a 12. The doctor stated that this usually means that the readings were not accurate from the Fetal MRI or there was an organ that was up that they couldn't make out. Today we found out the the 1.6 LHR was never our true number and that it was more of a 1.09. Still decent but not great which means that the ECMO will definitely be primed and ready for the baby if he needs it. It definitely wasn't news we wanted to hear but knowing that we still have a 60%-65% for survival for baby is promising. We also found out that the liver is still down and the doctor stated that at this point nothing else should be moving into the chest cavity which is great news. Having the liver up is not a good chance for survival for CDH babies. I was sad leaving U of M last week but I am staying positive in knowing that Baby Aiden is a fighter and we will definitely be bringing him home.
On Friday July 8th following my Michigan trip, Carrie and Brian Baker held a benefit for Baby Aiden at The Shiloh. It was a great success and there were over 350-400 people who showed up to support our family. There was a silent auction, raffles, Corn Hole tournament, Texas Hold'em tournament, childrens' games, dinner provided by Texas Roadhouse, and a cash bar. Greg, Cole, and myself cannot thank everyone enough especially the Bakers, Natalie Zehr, The Shiloh, Texas Roadhouse (Bryan & Matt), volunteers, family and friends for the generous donations and time that everyone helped make the benefit so successful. Texas Roadhouse has also dedicated a night on Thursday July 21st to give our famly 10% of their generated food sales that night as a donation. Come on out on that night and get some yummy food. We are so truly blessed to have such wonderful people in our lives.
I am mentally trying to prepare leaving Greg and Cole when I go to Michigan. Greg, Cole, and my immediate family will be with me during the birth of Baby Aiden. Greg will stay with me as much as he can and bring Cole to see me but not seeing both of them everyday as I do now will be extrhemely emotional. I am trying to stay positive but worry about the effects it may take on both Greg and Cole. I hope Cole knows how much I love and miss him and we don't loose the bond that we built up over the last 3 years. I hope that Greg can handle working full-time, finishing school and becoming a single dad until I can come home with the baby. I worry a lot! I worry for Greg, for Cole, for Baby Aiden especially, about bills, about returning to work, missing my family, the list goes on and on. I hope that I will be able to focus on the right things at the right times. Please keep our family in your thoughts and prayers. I will try to keep the blog updated more as we get closer and closer to Baby Aiden coming into the world.
Thanks for all your support and prayers,
Leslie, Greg, Cole and Baby Aiden (due August 2011)
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