October 2011 Poem

Found this poem on facebook from a mother from my Compassionate Friends group and wanted to share with you all.

Grieving Mothers

I Miss My Child

Don't ask me how im doing, you don't really want to know
you want me to say im doing fine, not let my feelings show
you talk about your children, but you never mention mine
you think thats showing that you care, that i will think thats fine
but my child is still important, i love them just the same
it hurts that you wont talk of them, afraid to say their name
the club that i belong to, it gets bigger everyday
i hope i never see you there, of that i hope and pray
its a group of special people, whose hearts are forever broken
and our pain is only doubled when our angels names are never spoken
we're angel moms and angel dads, and we want you to remember
that we didnt ask to join this club, or ask to be a member
so when you ask that question, and i say that im just fine
give me a hug and say to me "your not, no need to lie"
all we need is understanding, sometimes a shoulder too
if the roles were reversed we'd do the same for you

by Michelle Garner
(a amazing mother)

 

My first meeting and a trip to Michigan

On Tuesday October 4th, I will join a group called Compassionate Friends for the first time in Fort Wayne. I am nervous, scared, sad, and happy about going. I am not sure what to expect but I do know from connecting with some of the members on Facebook that seems like the group for me. This is a support group for parents who have lost their children. I am hoping this will help me through my process of grief. I also joined a "private" group on Facebook with other CDH moms who have lost babies. It has been such a blessing. I continue to stay in contact with another mother whom I met during my time in Michigan and she is wonderful. She lost her daughter one week before Aiden passed. Please keep her family in your prayers as they continue to struggle with the passing of their baby girl. I am actually meeting with them this weekend in Michigan. They are having a rememberance day on October 8th and Greg and I will attend. This will be the first time we have been back to Michigan and I am hoping for strength to get through this program.  I have been reading books to help me with the loss of Aiden. I am having a memory chest made for me to put some of Aiden's belongings in to keep in the family room. My mom had his name written in the sand by Christians Beach. It is a couple in Australia who write children's names in the sand during sunset and then sends you the file. It is absolutely breathtaking. I will try to post it.                                                 

                                                                        
I have put together a collage of pictures as a tribute to Aiden on one of our walls in the house. I can't wait until its complete. We have many other pictures of Aiden on our home but this will be "his wall". We received Aiden's urn and it is absolutely beautiful and sits on our mantel. I also received my urn necklace and it is also beautiful and it makes me feel so close to Aiden. My sister's friend is helping me complete a scrapbook of Aiden. I can't wait to see the finished results. We engraved pumpkins this week and made one for Aiden of course. Cole decorated it with happy faces:) Greg, Cole and I have been attending church much more since Aiden has passed and it was especially hard to attend the first time after Aiden passed because church was the last place we saw Aiden because his funeral service was held there. Today at church was even harder because of the messages and a couple sat in front of us with a newborn baby about 3-4 weeks old. Of course he was a boy. Greg and I were heartbroken through the service but glad we were in church and were together to learn on each other. I am getting ready to go back to work in a few weeks and not looking forward to this at all. My work requires me to work with families, children especially babies and this will be so hard on me. I hope I have the strength to make it through each day. I am posting a poem I came across another blog and it touched me so much that I have to conclude with it. Thank you everyone for continuing to support us through our loss of our beautiful angel baby, Aiden.

Normal

Normal is having tears waiting behind every smile when you realize someone
important is missing from all the important events in your family's life.

... Normal for me is trying to decide what to take to do for Birthdays
Christmas,New Years, Valentine's Day,and Easter.

Normal is feeling like you know how to act and are more comfortable with a
funeral than a wedding or birthday party...yet feeling a stab of pain in your
heart when you smell the flowers and see the casket.

Normal is feeling like you can't sit another minute without getting up and
screaming, because you just don't like to sit through anything.

Normal is not sleeping very well because a thousand what if's & why didn't I's
go through your head constantly.

Normal is reliving that day continuously through your eyes and mind, holding
your head to make it go away.

Normal is having the TV on the minute I walk into the house to have noise,
because the silence is deafening.

Normal is staring at every child who looks like he is my child's age. And then
thinking of the age he would be now and not being able to imagine it. Then
wondering why it is even important to imagine it, because it will never happen.

Normal is every happy event in my life always being backed up with sadness
lurking close behind, because of the hole in my heart.

Normal is telling the story of your child's death as if it were an everyday,
commonplace activity, and then seeing the horror in someone's eyes at how awful
it sounds. And yet realizing it has become a part of my "normal".

Normal is each year coming up with the difficult task of how to honor your
child's memory and his birthday and survive these days. And trying to find the
balloon or flag that fit's the occasion. Happy Birthday? Not really.

Normal is my heart warming and yet sinking at the sight of something special my
child loved. Thinking how he would love it, but how he is not here to enjoy it.

Normal is having some people afraid to mention my child.

Normal is making sure that others remember his.

Normal is after the funeral is over everyone else goes on with their lives, but
we continue to grieve our loss forever.

Normal is weeks, months, and years after the initial shock, the grieving gets
worse sometimes, not better.

Normal is not listening to people compare anything in their life to this loss,
unless they too have lost a child. NOTHING. Even if your child is in the
remotest part of the earth away from you - it doesn't compare. Losing a parent
is horrible, but having to bury your own child is unnatural.

Normal is taking pills, and trying not to cry all day, because I know my mental
health depends on it.

Normal is realizing I do cry everyday.

Normal is disliking jokes about death or funerals, bodies being referred to as
cadavers, when you know they were once someone's loved one.

Normal is being impatient with everything and everyone, but someone stricken
with grief over the loss of your child.

Normal is a new friendship with another grieving mother, talking and crying
together over our children and our new lives.

Normal is not listening to people make excuses for God. "God may have done this
because..." I love God, I know that my child is in heaven, but hearing people
trying to think up excuses as to why healthy children were taken from this earth
is not appreciated and makes absolutely no sense to this grieving mother.

Normal is being too tired to care if you paid the bills, cleaned the house, did
laundry or if there is any food.

Normal is wondering this time whether you are going to say you have two
children or one, because you will never see this person again and it is not
worth explaining that my child is in heaven. And yet when you say you have one
child to avoid that problem, you feel horrible as if you have betrayed your
child.

Normal is avoiding McDonald's and Burger King playgrounds because of small,
happy children that break your heart when you see them.

Normal is asking God why he took your child's life instead of yours and asking
if there even is a God.

Normal is knowing I will never get over this loss, in a day or a million years.

And last of all, Normal is hiding all the things that have become "normal" for
you to feel, so that everyone around you will think that you are "normal".†

My first tatttoo

My first tattoo in rememberance of my son, Aiden James Reed. It hurt badly but it was so worth it. The picture isn't the best but I wanted to show it off. I will try to take a better picture and post later. Thanks:)

A poem I love........

What a Grieving Mother Really Thinks

Hello, Old Friend,
Oh, yes, you know
I lost my child a while ago.
No, no please
Don’t look away
And change the subject
It’s ok.
You see, at first I couldn’t feel,
It took so long, but now it’s real.
I hurt so much inside you see
I need to talk,
Come sit with me?
You see, I was numb for so very long,
And people said, “My, she is so strong.”
They did not know I couldn’t feel,
My broken heart made all unreal.
But then one day, as I awoke
I clutched my chest, began to choke,
Such a scream, such a wail,
Broke from me…
My child! My child!
The horror of reality.
But everyone has moved on, you see,
everyone except for me.
Now, when I need friends most of all,
Between us there now stands a wall.
My pain is more than they can bear,
When I mention my child,
I see their blank stare.
“But I thought you were over it,”
Their eyes seem to say,
No, no, I can’t listen to this, not today.
So I smile and pretend, and say, “Oh, I’m ok”.
But inside I am crying, as I turn away.
And so my old friend, I shall paint on a smile,
As I have from the start,
You never knowing all the while,
All I’ve just said to you in my heart.
~Kelly Cummings

My Wish List

I borrowed this from a blog that I read who borrowed it from Cherubs literature called “Wish List for Bereaved Parents” I modified some of it with my own words.

1. I wish Aiden hadn't died. I wish I had him back. If there is a way to get him back in my arms, I’ll find it. I don’t really believe he’s gone.
2. I wish you wouldn't be afraid to say “Aiden”. He lived and was very important to me. I need to hear that he was important to you as well.
3. If I cry and get emotional when you talk about Aiden, I wish you knew that it isn't because you have hurt me. I never stop thinking about him, you didn’t remind me he’s gone. His death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
5. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you more than ever, even if I’m harder then ever to deal with.
6. I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about Aiden and Cole the weather and anything else.
7. I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug. I’m so grateful for each and every time someone has reached out to us.
8. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of Aiden until the day I die.
9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss Aiden, and I will always grieve that he is dead.
10. I wish you wouldn't expect me "not to think about it" or to "be happy". Neither will happen for a very long time.
11. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal. Sometimes that means I’ll say things I don’t mean or are irrational. Thank you for letting me say them anyway and not taking it personally.
12. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.
13. When I say, "I'm doing okay," I wish you could understand that I don't feel okay and that I struggle each minute to get through the day. And I hate that my life is just “trying to get through”
14. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.  Expressing myself, even if you did something to bring out my worst emotions, isn't meant to be an attack on you.
15. Your advice to "take one day at a time" is excellent. I wish you could understand that I'm doing good to handle it at an hour at a time.
16. I wish you understood that grief changes people. When Aiden died, a big part of me died with him. I am not the same person I was before he died, and I will never be that person again.
17. I wish very much that you could understand - understand my loss and my grief, my silence and my tears, my void and my pain. But I pray daily that you will never understand.

The Band Perry - If I Die Young

Aiden James Reed

Aiden's Final Days

Monday, August 22nd.................Aiden, Greg and I had a rough weekend. Over the weekend, the doctors tried to trial Aiden off ECMO again and after only 35 minutes his oxygen levels (postductals) were in the 20's. Oxygen levels should be in the 100's. Aiden was shunting.....Pulmonary shunting causes the blood supply leaving a shunted area of the lung to have lower levels of oxygen and higher levels of carbon dioxide (i.e., the normal gas exchange does not occur). We were called over by the hospital to come be by Aiden's side. Greg and I both had extreme anxiety as we ran over to the hospital because we were not sure what we were walking into. It was not a good day. Aiden's was unstable all day. He was not happy at all. On Sunday, Aiden was very cranky and did not want to be touched because of the Saturday trial. All day long his blood pressure was high and then it would drop drastically. Greg and I grew restless with the doctor's plans and wanted to know what the next steps would be for our baby. Greg and I called for a meeting for Monday and we had it set-up for 2pm with the a list of doctors that we requested be present: Dr. Ruiz (Pediatric Surgeon) Dr. Myalischka (Pediatric Surgeon), Dr.Thatch (Fellow Pediatric Surgeon) ChistyAnn (Physician's Assistant), Jeannie (Prenatal Coordinator),  and Janet (social worker). There were a couple of attendees present as well as one of our primary nurses, Julie. Greg and I had a list of questions to ask the team of doctors so that we could figure out the next step in Aiden's care. Before the meeting, Dr. Myalishka found Greg and I at Aiden's bedside and the look on his face was not his usual "happy" one. I felt a pit in my stomach before we sat down for our meeting. Dr. Ruiz did most of the talking and we never made it to our questions because we were told at the meeting that after all that they had done thus far for Aiden that nothing was working and that there was nothing else that they could do for Aiden. We were told that Aiden was no longer making progress and and that we were prolonging the inevitable. Aiden would never come off ECMO because his pulmonary hypertension was so severe and there was nothing else they could offer him. The PPHN was severely affecting his lungs and heart and they had no other options. I don't think I heard half of what she said but Greg repeated it all back to me. I don't think I would have believed Dr. Ruiz unless Dr. Myalishka did not repeat the same words to me "prolonging the inevitable". Dr. Myalishka was the Pediatric Surgeon that Greg and I met with on our first meeting at the University of Michigan to discuss which hospital we were going to come to to give birth to Aiden. He is an amazing surgeon and won us over. I knew it was bad when not only Greg and I were crying but also our primary nurse and the prenatal coordinator too. Greg and I left the meeting numb and left the hospital to figure out what we were going to do and try to digest the information. We took a long walk in the gardens next to the Ronald McDonald House and thought about our lives without Aiden. I called my family and asked them to come down to say good-bye to Aiden. We talked with the doctors and nursing staff about our plan for Aiden and that we wanted to hold him while he passed. We spent the rest of the evening with Aiden and I sang him songs and read him books. We had him baptised by the Chaplain. The nursing staff closed off our section of the NICU space and gave us privacy to hold Aiden as he passed. We took so many pictures of our sweet baby boy. It was the most difficult time in both of our lives and I will never forget being able to sing to him and hold him tight as he made his way to Heaven. As he was placed into my arms that night he looked like he was in pain and as soon as I held him it was as if he was in the place he had always wanted to be...in his mommy and daddy's arms. Greg and I held him for hours and then at 12:41am on Tuesday August 23rd Aiden James Reed passed away. I hope Aiden finds so much joy in Heaven and is doing all the things he could not do here on earth like laugh, cry, run, and jump. I hope Aiden is looking down on us and keeping his family safe.
We held a service for Aiden on Saturday August 27th. It was a day that I hope parents do not have to endure...planning a funeral for your three week old son. I know he is in a better place and he is no longer in pain but each day is a struggle. We have planted a tree (thanks Lindsay, Grant, and Jude) for Aiden in our backyard and put flowers, engraved stones, and angels for our memoir for Aiden. We also planted a Japanese Maple in our front yard as another tribute to Aiden.
Each night we tell Aiden we love him and miss him before we go to bed. Cole doesn't quite get that Aiden is never coming home and tells me that Aiden in still in Michigan when I ask him where his brother is. Sometimes he tells me he is in heaven but he doesn't understand what heaven is after we have talked about it and even read stories about it. If any other moms who have lost children that have other children have tips on how to explain this better to my three year old I am open to suggestions. Cole has started to tell me that he wants "another Aiden" to come home. We have put up pictures in the house and plan on dedicating a wall in our home to only Aiden. There isn't an hour that goes by that we don't think of Aiden and wish he was here and I am sure this will never change.

Thank you everyone for your support and prayers through all of this.

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!!!!

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.

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.

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.

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!!

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.

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

Sunday July 31st

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!

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:)

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!

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.

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)

6 weeks and counting...

Six weeks from tomorrow I will officially be in Ann Arbor awaiting my induction. I will find out the exact date for the induction on July 7th when I go to Ann Arbor to get a Fetal MRI, a Fetal ECHO, meet the Pediatric Surgeon again and also meet the OB who will be delivering my baby. I am excited to get the final details of how things will play out for the delivery. I am starting to get super nervous about being away from home, away from Cole and Greg and having limited access to supports around me. We have been trying to do as much as possible as a family. Spending time outside, going to the pool, and using our Zoo membership. We have been getting ready for Cole's 3rd birthday to approach which is June 21st. We are so excited and are getting him a Scooby-Doo cake which seems to be his favorite for the time being. I am trying to prepare for all of this by starting to pack but it definitely is not the same kind of packing you would normally do for the delivery of a newborn. It is more like packing for college: towels, sheets, food, etc.

I had a doctor's appointment on June 16th with Dr. Wheeler and he stated that everything looks great with the baby other than the CDH diagnosis. Liver is still down, stomach is still up and part of his bowels are still up. I have been meeting with Dr. Wheeler every two weeks to ensure that my amniotic fluid stays within a reasonable level. Mothers with CDH babies tend to have higher levels of amniotic fluid (polyhydramnios) which can cause pre-term labor. Dr. Wheeler stated that he would just "drain" me if needed but feels that my levels are great at this point. I have my next appointment on June 30th so wish me luck!

We are also getting ready for the benefit that the The Baker Family has so graciously put together for us to help with medical expenses. It is located at The Shiloh on Friday July 8th from 6pm-10pm. There will be a silent auction, raffles, childrens' games, Texas Roadhouse dinner, Texas Hold'em Tournament, Corn Hole Tournament, and cash bar. It should be loads of fun so please come out and enjoy yourselves and invite any of your friends and family. Thank you all for continuing to follow along with our story and support us in this journey.

Leslie, Greg, Cole and Baby Reed

Decisions

It has been a long and stressful week. We took a trip to Riley and IU Hospital in Indianapolis on Monday, May 9^th. We also took a trip to University of Michigan Hospital Ann Arbor on Thursday May 12^th. During both trips we were able to have tremendous help from my parents and sister who were able to watch Cole, take him to the sitters as well as paint the nursery for Baby Reed. We have now decided that we will be delivering our baby boy at the University of Michigan Ann Arbor. The coordination and communication from the hospital in Michigan was absolutely amazing! The best part was meeting the Pediatric Surgeon, Dr. Mychaliska. He sat with us for two hours explaining every bit of detail on how he would help our son beat the odds of survival. He has given us a survival rate of at least 80% for our son. He gave us more information on ECMO. ECMO stands for Extracorporeal Membrane Oxygenation. ECMO is a special procedure that allows sick or injured lungs the opportunity to rest and get better. When lungs are sick or injured they are unable to provide oxygen and remove carbon dioxide (a waste product) as they normally would. ECMO is similar to the heart-lung bypass used in the operating room but is used for longer periods of time.

At both hospitals I had an ultrasound, genetic counseling, a fetal ECHO (a scan of baby’s heart), and a fetal MRI. Ultrasounds looked good and showed no other abnormalities other than the hernia. The babies’ stomach, some of his intestines and the tip of his colon are in his chest. The hernia is left-sided which means that his heart has shifted into the wrong place and all of this puts pressure on his lungs which makes them small and underdeveloped. Babies who have CDH suffer from small and underdeveloped lungs. This condition is referred to as pulmonary hypoplasia. Although hypoplastic lungs are the underlying threat to survival, the critical nature of the condition at birth is due to pulmonary hypertension or persistent pulmonary hypertension in newborns (PPHN) as a result of the underdeveloped lungs. Both hospitals concluded that the baby has a LHR (lung-to-head-ratio) of 1.6 which gives a better chance of survival. A sonographic lung-to-head ratio (LHR) is used to assess the baby's lung size compared to his gestational age. This number assists the team in determining the severity of lung problems anticipated for the baby.

The plan now is to continue to have prenatal care in town with Dr. Wheeler and make one or two more visits to Michigan to continue with testing as we get closer to my due date which is August 18^th.  I will have another series of test around week 33 in Michigan and they will then determine when I will move to make sure I am in town for my induction which will be planned for week 38. I do not want to go into labor in Fort Wayne. My name will be on the waiting list at Ronald McDonald House in Ann Arbor and I will check into their hotel until I can get into a room at the RMD House. I do not know how long I will have to stay there as this depends on how well our son does after he is born. No matter what numbers they give us for survival we will have to pray that each day he is with us that he continues to want to fight so that he can come home with us.

We want to thank everyone for their continuous support and kind words. Each day has become a struggle but with your prayers and support they become easier. Greg and I want to especially thank our friends, The Bakers (Brian and Carrie). They have been a lifesaver through all of this. We know the Bakers because their son was diagnosed with CDH in utero and we attended their benefit over five years ago. They have helped us with all of the questions and concerns we have had. They are also holding a benefit for us on Friday, July 8^th at the Shiloh. The benefit will be a huge support to us. Thank you again everyone for all that you have done!

Our beginning

This pregnancy has been rocky since the moment we found out I was pregnant. We found out I was pregnant after Christmas and soon after found out that I had a small hemorrhage. I was put on pelvic rest for the first five months of my pregnancy which meant no lifting anything over ten pounds which included Cole. It also meant that I no longer had to do chores. Thanks Greg! We have had many ultrasounds since finding out and have many pictures of our baby.

At week 19, Greg and I went to the OB appointment and we found out that we were having another little boy. Greg was super excited that it was another little boy! During the ultrasound, the doctor told us that he would like for us to have another ultrasound at our next appointment to get a better picture of the heart because it was not clear. He felt confident that everything was fine but needed that next ultrasound to be sure. He had me a little worried. At 23 weeks, I went back to the OB and had my ultrasound. The ultrasound tech made no indication that anything was wrong during my ultrasound and stated that she had gotten everything that she needed. The OB came in and stated that the baby still was not cooperating well and that he wanted to send me over to the Perinatal, Dr. Wheeler to get a Level 3 ultrasound done to ensure everything was okay. I was able to get in the next day and took my mom along with me since Greg was completing a final. Little did I know that during this ultrasound that we would find out that our baby has CDH, Congenital Diaphragmatic Hernia. I instantly knew what this was because I had attended a benefit for a friend of mine, whose child was also born with this four years earlier. Never in a million years did I think that I too would be carrying a baby with this same condition.

CDH occurs in approximately 1 in every 2500 births. The cause of CDH is not yet known. A baby's diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.  Currently the only organ indicated that is "up" is baby's stomach which is by the heart.

Every baby diagnosed with CDH is different. Survival rates depend on the types and numbers of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual. There is no reliable indicator to predict if a baby will do well or not. Babies with no diaphragm and little lung sometimes do well, while babies with 2 full lungs can sometimes do poorly.

We currently have appointments set for Riley on May 9th and University of Michigan on May 12th. We have a jam-packed day for both locations. I will be getting an MRI and Echo done which will help to give the doctors a better feel of what we are in store for after he is born. We will decide after these appointments where our baby has the best chance of survival.
We want to ask for lots of prayer and support during this time.