37 Weeks

I cannot believe how fast the last week has gone. The weeks waiting for 36 weeks seemed to take forever, simply because it was crucial to make it there. Now we are nearly one week away from delivery day! Just 10 short days away.

Last week, the team had a comprehensive meeting about delivering Kennedy, finalizing all the details. Yesterday, we had an ultrasound and a fetal echo. The ascites in her belly has remained the same, and the doctor said the edema under her scalp has seemed to go down a bit! Such amazing news. Praise the Lord! With all that being said, yesterday was our last set of appointments before April 20.

The day of delivery is obviously going to be pretty hectic. We are the first scheduled appointment, scheduled for 7:30AM. We will have to arrive at the hospital around 6AM to get me prepped for surgery. Instead of delivering me on the woman's floor where they typically deliver babies, we will be delivering on the general surgery floor in the OR next to our surgeon's (Dr. Ohye) OR. Blaine will not be with me for my epidural, as they will be prepping him to meet us in the OR for delivery. I am so happy and grateful he will be able to be there with us and get to see his baby girl. Once Kennedy is delivered, she will get cleaned up, vitals taken, baptized, pictures taken, and prepped to head over to the next OR for her septostomy. Blaine and I will be returning to recovery and they will be keeping him updated. Once I can be moved into my postpartum room and Kennedy is out of surgery, I am hoping I will be able to go up and see her ASAP.

These last few weeks have been pretty stressful in themselves, let alone this next week and a half. I still feel like I have gotten nothing done, besides trying to keep the house decently picked up. Sleep at night isn't easy, and I still have to pack our bags!!! Yikes. Thankfully, I still feel great, besides my sore hips and lack of sleep for the most part. No signs of labor yet. And I at least have my lists written out for what I need to pack for Carsyn and I. My dad is coming this weekend and will be taking Izzy back to Ohio with him, until we are ready for her to come back home. Every time I think of her leaving, I get teary eyed and slightly upset. It's always been difficult for me to leave her. The longest she's been gone has been 2 weeks. I don't even know the next time I will see her, and Carsyn has been all about her dog lately, which really breaks my heart. When Izzy isn't visible to her, she always asks, "Where's Izzy?" She says Izzy better than she says anything else. At least I know Izzy will be taken care of, I just hope she doesn't forget me! ;)

As we all prepare for these final days before our lives really take on a big change, I have started a group on Facebook (link is posted at the end) for all those who would like to follow. I will continue to update the blog, as it is very therapeutic for me to write about my thoughts and feelings, but on the group it will be easier to post updates and pictures and for people to contact us. Please understand that we have begun these things (blog and group) to try and update all our friends and families as easily as possible for us. We love hearing from everyone, but trying to text, call, and message each individual back can be overwhelming. So if we don't directly respond to you, do not take it personally! We still enjoy hearing from you all! :)

God bless,

The Maag Family

Photo courtesy of A Stitch in Time Photography

Big sister laying with little sister's blanket.

Photo courtesy of A Stitch in Time Photography

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36 Weeks

With a big sigh of relief, we are so happy that we have made it to full term. If Kennedy decides to make her appearance before April 20, they will do what they can. On the other hand, as time is quickly winding down, there seems to be endless things to do. As there always seems to be an endless list of things to do before having a baby, I feel like my list seems twice as long this time around as we won't be home in a few days after delivery. Trying to set up arrangements to get the dog home to Ohio with my dad (even though it will break my heart to see her go, and I will cry like a little baby), packing bags for Blaine, Carsyn, and I and not knowing how much to pack, getting last minute baby items that we will need, etc. my list seems to just go on and on and on. It's kind of overwhelming when all I want to do is sleep, as I haven't been sleeping well with the combination of being uncomfortable and my racing mind. Carsyn has been sick this past week, and thankfully my aunt, uncle, and little cousins were visiting this week over their spring break, and they were beyond a HUGE help and allowing me to nap for 2+ hours almost everyday.

Our doctors appointments haven't been anything dramatic, as of late, praise God. Nothing much has changed in regards to the ascites (fluid in her abdomen), but her heart is still pumping strong and her biophysical profile looks great. As the stress from the appointments has been minimal, with time ticking down so quickly, we have been getting pretty emotional. Our emotions seem to be running wild and are going in every direction. I absolutely cannot wait to see her, but on the other hand I am so scared, nervous, and anxious. I know things will be hard and this is going to be a lifelong journey, but I guess you never know the circumstances until you are in the moment. I hate this feeling, but it's extremely difficult seeing all our friends having adorable, happy, and healthy babies, along with happy families with their new bundles of joy. I feel so selfish and jealous, but I feel like it's not something I can control. I don't know when I will even be able to hold Kennedy, or what her health will be like when she arrives, besides being already very, very sick. Don't get me wrong, I am so incredibly happy for all those people, I just wish I could join them in that realm.

Blaine will be traveling to Louisville, KY next weekend and Virginia the following weekend for track meets. And in 17 short days, Kennedy is scheduled to arrive. Please continue to pray for us as this journey is just beginning.

The pictures below were taken by Amie of A Stitch in Time Photography from Haslett, MI. Thank you to Blaine's athletes for this amazing gift, and an even bigger thank you to Amie for donating her time and sessions to us to help capture some beautiful photos along this difficult journey.

Going home..

It's definitely been a tough and trying few days. The doctors are still stumped and don't know where the fluid is coming from. I have been on a medication to help her heart pump a little stronger to see if it helps lower the fluids, however, it's such a slow process it could take some time still. The doctor came in today and ran a quick ultrasound. Since it's such a slow process, she can't really tell if the fluid has gotten better or worse. She was reassured that it is continuing to stay away from the heart and lungs, and that there weren't any drastic changes in the current fluid just from seeing with the naked eye. The MFM team discussed and agreed upon us going home for the night to be with Carsyn and get to sleep in our own bed. Maybe it would be a little less stressful on me, and in turn help Kennedy. I am continuing my medication, and we have an ultrasound scheduled for tomorrow, Monday, March 16, back in Ann Arbor. We also then have another appointment in Ann Arbor scheduled for Wednesday, March 18, where we will reevaluate again, and also meet with the surgeon that will be working on Kennedy.

We are praying the fluid level stays the same or gets better, and pray it stays away from her heart and lungs. I am pretty nervous being home now, but I am so happy to be with my girls for the night and day.  I'm hoping I can relax a little bit and get some better rest than I have been in the hospital.

Thank you all for your loving prayers and support.

33 Weeks

Yesterday was Carsyn's 15 month-day. I had a doctors appointment in Lansing with my specialist and Blaine had left on Wednesday for Arkansas for Indoor Nationals. I left Carsyn with a babysitter at home and went to my appointment. We had an ultrasound scheduled to look at Kennedy's growth and check on her. This has been one of the first appointments I have had to go to on my own without Blaine, and I was trying my best to stay relaxed which I was doing pretty well until the ultrasound tech came back in and said my doctor wanted a biophysical exam (ultrasound looking at baby's movement and practice breathing) done. In the middle of that, my doctor came in. She told me she saw some fluid in Kennedy's abdomen, which is one of the first signs of heart failure. My worst nightmare had just occurred. She asked me to head straight to Ann Arbor and go to triage where I would get monitored and see my doctors at Mott's and hope they can figure out what is going on.

Leaving the doctors office was one of the most trying times I have had to endure alone along this whole process. I wasn't sure what Blaine was doing and I was so scared he wouldn't be able to talk to me. I didn't know what to do about Carsyn and Izzy, and I didn't want to go home first because I didn't want to upset either of the two girls coming home and having to leave again. Of course I was a crying mess. Blaine finally answered his phone and he did all the phone calls and figuring out who will watch Carsyn and let the dog out, etc. all from Arkansas as I got on the road straight to Ann Arbor.

No one was quite ready for my arrival once I reached the hospital. The doctors hadn't communicated with the support staff very well, but I got a triage room and got everything ready to roll. I wasn't quite sure what I was expecting, because I wasn't told very much either. Blaine's brother, Blake, met me at the hospital and stayed with me all evening. Blaine had decided that he needed to be here, as we didn't know what we were facing at the time, although we did know Hydrops is a very serious and life threatening condition. He called his travel agent and there was a flight he could get out on was in 2 hours, so he immediately headed to the airport to come home. I met with another one of the MFM team. He did an ultrasound to get some pictures for their team and to send to the cardiologists so they could determine how urgent the situation was. He found some other edema, or swelling, under Kennedy's scalp also, which I was not sure how to feel at that point, just because it was located on her head and I didn't know how serious it would be. He told me the cardiology team and the high risk MFM decided that we could wait until the next morning to regroup and take another look. Of course I had to wait all night for any sort of answer, and I was scared, but at least Blaine was on his way. I was glad knowing someone was taking care of Carsyn and I had someone to let the dog out. My in-laws were on their way to our house to stay with Izzy and would get Carsyn in the morning, as I didn't know how long I would be staying here in the hospital, or what we would be facing next. Blake stayed at the hospital with me until he had to go pick Blaine up from the Detroit Airport as he was landing at 11pm.

I had one of the best nurses I have ever had first. She took  great care of me the entire time. I was given a steroid shot in the hip to help Kennedy's lungs develop in case they do need to take her earlier than the expected date of April 20. I have never felt anything like that. The needle is never bad, but the feeling that someone kicked me in the hip and the sore and pain in my hip for the next 15-30 minutes was brutal. I sat in my bed until it went away. I had to have some blood drawn too, and was hooked up to the baby monitor to watch Kennedy's heart rate and for contractions. All was well and the best part, I didn't have to keep the monitors on my belly all night, so I could get some good rest. The hardest part of the night was waiting for Blaine to arrive. It felt like an eternity until he got there, and I don't think I've ever been so happy and relieved to see him once he did get there. I was prepared for a long restless night, just from all the anxiety, and most people know how comfortable the hospital beds are, not. We both just sat on my bed for awhile and began watching a movie. We didn't get to sleep until about 2:00am, and our fetal echo was scheduled for 8:00am. The nurse said she would leave us alone for the night so we could get some sleep and would be back before the appointment. I slept pretty well (I think mainly because I was just so exhausted from the emotional day), but woke up around 5:30, and fell back asleep for about 15-20 minutes before a little baby in the hall way woke us both up crying. From there I couldn't fall back asleep. I lay there thinking about Carsyn and how she was doing, and also that I may never get to hear Kennedy cry. It broke my heart all over again. There was so many things running through my mind and I didn't know anything new, besides things have gotten a little worse so quickly, but how much worse really. The nurse thankfully came in a short time later and got my vitals for the morning and told me to get some breakfast before my appointment, as it would probably take quite some time.

The fetal echo came and went. We confirmed the Hydrops and got some good news that there was no fluid around the heart or lungs. One problem left, what is causing this fluid to pool in her belly and scalp. We sat down and discussed the findings and the doctors decided that delivering Kennedy now would not be an option. With her heart condition, and the fluids, on top of being premature was not an option and they wouldn't be able to do much to help her at that point. Their goal now was to send me down to the fetal floor and get a general ultrasound to see if they could see any underlying reasons why there was fluid in her abdomen........the doctors are stumped. There aren't any signs they find where the source is, and at this point there aren't many options other than to try and give me a medication to help her heart pump a little stronger and hope it stalls or improves the fluids. I agreed to take it, as I would do anything possible to give her a chance in this world. The doctor also called for a couple blood labs to see if I had a virus that can be causing the edema and fluid backup. We will be here in the hospital for the rest of the weekend, and will take another look on Monday and hope to see some good results.

How does one prepare themselves to lose a child? How do you prepare yourself to fight so hard and expect her to fight 10 times harder for herself when you know she will already be very sick from her first moment in this world, and possibly even more sick with another life threatening condition that the doctors don't even have any answers to treat it? I never thought in a million years I would ever have to face the thoughts of losing my precious baby, but with all the hope and love in the world, it's not something to completely look past. One of the hardest things is having to face all these doctors and seeing the pain even on their faces because they are doing what they can to help her, but at this point they don't know what to do. The most they can do is to continue giving us our options and praying they work out in our favor. But as most have known, it hasn't exactly worked that way thus far. We are still so optimistic and hopeful that she will make it. Her heart is beating strong and she is growing like a weed, on the larger side of the spectrum which is good, but everything else looks great besides what we already know and now the mystery and unknown of her Hydrops diagnosis.

It will be a long weekend. Long days. Long nights. Just sitting around waiting for Monday to arrive to hopefully see some miracles beginning to work. I will at least get to see and spend some time with Carsyn tomorrow, but being away from home without her is so hard. in 15 months, I have spent every night with her, besides this weekend and the one night before intervention. I've taken her everywhere with me, and I really haven't even gotten away without her much in general.

Thank you everyone for the prayers. We need them more now than ever before. Please pray for her to continue to fight and be strong. To give herself and the doctors just a couple more weeks to give her the best chance possible. For all the doctors involved to find something, anything, to understand why this is happening and for their knowledge and gentle hands as she is brought into this world within the next few short weeks. For our family to stay strong and continue to fight with our precious girl that we love so so much more than she will ever know.

May God bless you all.

HLHS/Kennedy Bracelets

I know a lot of people have been asking where they can get Kennedy bracelets or buy them. If you would like any, all we are asking for is a donation of any kind! If you have donated and would like bracelets, please email me (kennedysjourney@gmail.com) with your mailing address, how many you need, and if you donated online the email you used to donate with.

Please understand if we do run out, we will be ordering more, which could take a couple weeks. I also mail them in batches, so please be patient! Thank you so much for your support, we truly appreciate it so so much!

DONATE HERE!

31 Weeks, 3 Days

Things this past week have been pretty slow. Carsyn has been pretty fussy and grumpy, which makes me very thankful I have been able to pick her up and carry her around. If we did have intervention I wouldn't have been able to pick her up for about a week. We think she is cutting her molars, and all she wants is to sit on my lap and watch TV. She never watches TV that often, and usually plays on her own very well.

Kennedy has been wiggling around a lot, and has been getting the hiccups quite often. When Carsyn sits on my lap....or belly, or even pushes into my belly at all Kennedy is already pushing back. She's a feisty little girl, and I am praying she continues down that road.

One of our cardiologists at Mott's contacted me last week, just checking in to see how we were doing and to inform us of our tentative plans for the rest of the pregnancy. They had spoken with the surgeon who has accepted to do Kennedy's surgeries, and from the research Blaine and I have done on him, we are very happy with him. We will meet with him at our next visit, March 18, and go over more specific details once Kennedy arrives. Our tentative date for delivery will be planned for the morning of Monday, April 20 (38 weeks, 3 days). Just one day after the gestation I was induced with and had Carsyn! Kennedy will be delivered via c-section, and immediately undergo full surgical atrial septectomy right in the operating room. This first surgery would be the first step of the hybrid Norwood procedure. There will be two more steps to the hybrid Norwood procedure, and those would likely be done another day after she has had time to recover from delivery and the first procedure. We honestly don't know much about the hybrid Norwood, and we aren't sure how all of the different steps are involved in that first week of life. With everything else we have been able to research, but with her delivery and first procedure, we are waiting to speak with the doctors and surgeons for a much better and more clear explanation of all the steps. I do have a general idea of how the hybrid works, I just know I don't know it well enough.

Although, we are back to wait, again, we are very confident in our doctors and surgeons and are looking forward to meeting and speaking with all of them in a couple weeks.

Carsyn wearing her shirt for her little sister! ❤️ 

Madisyn (Cousin) and Columbus Grove 8th Grade Girls held a fundraiser for Kennedy at one of their basketball games in February. 

Fetal Intervention

Disappointment is never easy. All the hope we get and things that have been laid in front of us don't always work out, and we know all things may not work, but you never expect it. It's always disappointing when it doesn't. As scared and nervous we were for this intervention, we had hope. Hope for Kennedy that this could be her life changer, but it wasn't. It obviously wasn't in God's plans for this to happen, and she even let us know that herself in a way.....

Kennedy 30 Weeks

Kennedy 30 Weeks

Yesterday, we had a busy day, so it thankfully went by decently fast. I took the dog to the vet because she has been itching and chewing herself badly. Ever since we found out Kennedy had a CHD, Izzy knew something was wrong. German shepherds have been known to be emotionally sensitive animals, and she has truly been showing that since the week of January 7. It's almost like all of our stress and anxiety is her stress and anxiety, which makes me feel awful because I know she is miserable in her itchiness to begin with. I then had some errands to run while I was out and since Blaine's parents came in on Sunday night I didn't have to drag Carsyn all around the frozen tundra. I don't get to do many things on my own, which I truly don't mind, but sometimes I just need some space to breathe even if it means doing things I don't necessarily want to be doing. Blaine got home right when we were hoping he would be home to head to Ann Arbor.

We finished packing our bags and seeing Carsyn for a few minutes before getting on the road. She stayed the night in Lansing with Blaine's parents and Izzy and ended up coming to the hospital in the morning. The drive went by fast, as fast as an hour drive can go with all the anticipation waiting to greet us the next day. I was pretty happy because I found out I passed my 3 hour Glucose test and I don't have gestational diabetes! The drive really started to make things feel real. We made it to the hospital in a timely manner and got my pre-op blood work done in literally 30 seconds. From there, we found our way to the hotel where my dad was already waiting for us. I've always been a 'big eater' especially the night before big events, not necessarily sporting events, but mostly when I know I have to fast for a period of time. We went to Red Lobster for dinner and I honestly don't think we could have ordered any more food than we had. After dinner, we went back to the hotel. At that point, I really didn't want to do much besides relax. I think all the running around from the day made me pretty tired, which I was VERY happy about. I actually fell asleep decently early, and even though I was up every so often, I still got about 6 hours of sleep. The last time I could drink any water was 2:30am. I woke up with a really dry mouth and looked at my watch. It was 2:07. I had half a bottle of water next to me, so I decided I was going to chug it while I had a few minutes before I was cut off.

I woke up around 5:00 for the day and got my shower with the required antibacterial scrub. We were planning on leaving at 6:00 for the hospital so we could get there and find which floor we had to be on, because I wasn't quite sure which one. Let's just say that it all didn't happen that way. I was completely flustered and extremely anxious before we even got out of the hotel. Once we finally made it to the hospital (with a few wrong turns here and there), we ended up on 3 different floors in the hospital and some of the people we asked didn't even know where we were supposed to be themselves! Right when we were supposed to be there (6:30), we made it to our destination. I had to change into the lovely hospital gown and put all my items away. Our nurse got my vitals and ran my iv, and also had the pleasure of giving me some "special medicine" to stop my uterus from contracting. Thankfully, I am not a shy person. They brought in an ultrasound machine and looked to see Kennedy's position and her weight so they could give her the proper dosage of medicine. Once everything was settled, and the doctors were all mostly arrived at the hospital, they transported me down to the surgical floor. Blaine was at least able to go down with me to meet the anesthesiologists.

Looking at her position and finding her weight.

The anesthesiologists came in and completed all their work. We were mostly prepared to get my epidural; the anesthesiologist was just about to open the epidural when the MFM doctor walked in and told him to wait to open it because she didn't want to have to give me an epidural if Kennedy wasn't positioned right. They brought in the ultrasound machine on the surgical floor and low and behold, she was not in position. We went on a 10 minute walk to try and get her to move, which she did, but not enough. Next, instead of walking, the doctor just had me roll to one side to see if she would move. Again, she moved, but the wrong direction this time. So I rolled to the other side for about 10 minutes. She was in a much better position then, but not necessarily ready for surgery. The doctor was having trouble seeing the septum and finding the angle she would have to take around all the other structures. The other MFM doctor came in and looked for himself and so did two cardiologists. They all left for a few minutes and came back in and told us, once again, heartbreaking news.

Walking the halls trying to get Kennedy to move.

Kennedy is growing great. She is a great weight and her heart is growing, except the left side of the heart including the left atrium, significantly. The problem they were discussing was the fact that the stent was too big for the area it was supposed to be placed. All the doctors had a few different concerns: 1. The stent was too big for the area. 2. The left atrium was so little they were worried of going too far and puncturing the other side of the heart. And 3. Corrosion of the stent because it would be pushed up against the left atrium wall. They all felt at this point the risks were more than the benefit, if everything went completely perfect and Kennedy would be in the absolute perfect position, there was even less margin for error for the doctors. The little glimpse of hope we had was once again whisked away. It was hard to be upset because I knew she was still safe inside my belly and I didn't have to worry about the procedure. However, what would this mean for her from here? What's next? The waiting game, once again.

We discussed with the doctors the next steps to aim for. I hate that word "aim" just because it shows so much uncertainty. At this point though, we aren't quite sure of anything. How can anything be certain, when everything starts to go one way then we get thrown a curve ball. The MFMs' and cardiologists' next steps are to meet with the cardiothoracic surgeons to discuss what they think. We now have two scenarios that can happen. They both are scheduled C-sections between 38-39 weeks (target time, but it all depends on her growth) where all the doctors are on hand and ready to intervene immediately. It all depends on what the surgeons and doctors think is best, because once she is delivered they only have a slim window of time, called the honeymoon period, where the babies are okay, but will go down hill quickly. Some babies honeymoon period is 5 minutes, and others could last 30 minutes. All the time the doctors have after delivery is so precious and crucial.

The first procedure that could be done is a normal C-section where they deliver her in the cath lab and take her across the room to operate immediately to open up her atrial septum. The second procedure is called the EXIT (Ex Utero Intrapartum Treatment) Procedure. With the EXIT procedure, I would be fully sedated and they would do a C-section but only deliver her head and shoulders and intervene before she is fully delivered leaving her on the placenta until she is fully delivered.

Kennedy's survival rate, from our understanding, has gone down to about 50/50 now. We are just praying she will continue to fight, and grow, and be strong for when she arrives. All of our doctors are so amazing, and all the prayers, support, and love from everyone is truly incredible.

Over the next month, we don't have much dealing with Kennedy. We will have a couple more growth checks, and will meet with the surgeons and doctors in Ann Arbor to discuss a delivery date and all the other details.......again, we wait.

We aren't necessarily upset the procedure couldn't happen, we are more disappointed the doctors couldn't do what they thought was best and scared, again, for what the future holds for our precious girl. For now, we know she is safe where she is and she is growing well. Please keep praying for us, as our road has become a little rocky, once again. We understand this process and journey isn't always going to be easy and smooth. There will be so many more ups and downs, and we will take them as they come. We believe Kennedy is one hell of a fighter (pardon my language), because that's what we have learned over our lives, to fight like hell.

Thank you so much everyone for all the thoughts, prayers, and love today. We truly felt it, but it obviously was not meant to be, and Kennedy seemed to feel the same way by not getting into the perfect position.

Please keep sharing our DONATION page. "Every little bit makes a difference."

Also, if you could, please say an additional prayer for Blaine and all the athletes traveling to Cleveland, OH for the Big Ten Meet this weekend. I am happy Blaine won't have to drive his own car to the meet, but also that he won't have to leave us at home with the unknown after the surgery that was supposed to happen. GO GREEN!

Michigan State University Throwers