There's no place like home!

Jackson has been home from the hospital for a little over a week now. This has been a week of adjusting and settling into our new routine. We've been trying to find a routine that works for all four of us. 

He's been doing great since coming home! He's eating like a champ. I think he's making up for lost time with eating. He's taking about 4 ounces every 3 hours. My sister informed me that that is about what her 6 month old daughter is taking. And Jackson is only 3 weeks old! He's napping through the day and sleeping some at night. He wakes up about every 3-4 hours during the night. He's quickly gaining back the weight that he lost at the hospital. 

I agreed to participate in a study that measures Jackson's weight, oxygen levels, intake, and our stress level for the first 4 months. This requires me to weigh him daily and check his oxygen levels daily. It's reassuring to me to know that he's gaining weight and his oxygen levels remain great. This will also alert us to any problems that arise with weight or oxygen levels. It puts my mind at ease a bit. 

Since coming home, we've been to the doctor 3 times. 1) "newborn" check up with his pediatrician, which he passed with flying colors! 2) cardiac clinic check with the nurses in the surgeon's office. He got his last set of stitches out and they said he looked great! 3) back to the pediatrician for a sick appointment. He seems to have picked up a cold from his sister. Of course, we panicked a little mostly because he's 2 weeks out of heart surgery. We don't want any complications. The doctor assured me that she would have brought her child in too. I still felt a little ridiculous for taking him to the doctor for a cold. Oh well. Better safe than sorry. 

Lucy and Jackson have started bonding. She tries to give him his pacifier when he cries. She kisses him goodnight every night (most likely where the cold came from), and she offers him her blankie when she's not using it. 

We're all definitely doing much better since being home. As Dorothy so eloquently put it, "there's no place like home". 

Many people have been asking about Blair. I'm happy to report that she is home from the hospital too! She went home on Wednesday. Please continue to pray for her and Jackson's recovery and healing. 

Happy Easter Everyone!! 

Home Sweet Home

We were officially discharged from Children's Hospital today. And we couldn't be happier. Jackson passed his echo and the final check from the doctors. Per hospital policy, we had to taken out by "transport". We were told they would be in our room in 15 minutes. About 5 minutes later, they showed up. Needless to say, we were not ready. I put Jackson in the car seat, took him out, put him back in, adjusted straps, fed him, etc. I felt bad for the two ladies waiting to transport us. They had to wait...and wait...and wait...and wait...

We called in the cavalry in to help us leave the hospital and arrive home. Ted's mom and sister came to the hospital to help us leave. My sister was on her way to Cincinnati to help us get settled into our new routine and family dynamic. 

Once home and settled, Ted arrived with Lucy. She was a bit shy at first towards him. I think it was the amount of people here and the fact that we had the video camera in her face waiting to catch her reaction. Once people started leaving, she opened up and was excited to meet him. 

Jackson started crying while I was changing his diaper. Lucy handed him her blankie to calm him down. My jaw hit the floor! She was giving up her prized possession to her new little brother. I think we'll all be ok.

We can't even begin to offer up enough thanks for everything that everyone has done for us. It has truly amazed us. We continue to be shocked by how far reaching this blog has gone and how far away the prayers have come. Thank you so very much!! 

We know Jackson's Journey is far from over. We will continue to periodically update the blog with all things Jackson Schwieterman related. We can't believe where this journey has taken us. Hard to believe just 3 very short weeks ago, we were anxiously preparing for his arrival. And now, we're home. 

Here are a few pictures of our adventure home today :)

Strapped in and ready to go home. 

Happy to be home. 

Mommy & the kids

Kisses! 

Sending lots of love and good wishes your way. Thank you so much!! 

Love, The Schwieterman's

Tubeless!!!

Last night was another rough night in the step down for Jackson and mommy. He didn't sleep much. Which means momma didn't sleep much. Clearly days and nights are mixed up. Hoping we get those straightened out soon. Again the wonderful nurses took pity on this momma and held Jackson while I got some much needed sleep. 

Rounds came with good news today. Jackson's feeding tube was pulled! Yay! They said his feeds were going uphill (which is good). So as long as that continues, he won't need it. So far so good. The real test will come tomorrow during rounds. Jackson got his stitches out today and his echo done. All those were done in anticipation of.....GOING HOME!!! TOMORROW!!!! Yep! As long as Jackson feeds good and his echo looks good, we're out of this place! 

That comes with a whole new set of worries. We're nervous to take him home...times two! Not only is he a newborn (which comes with its own set of worries), we're taking home a baby that had open heart surgery a week ago! So momma and daddy are nervous! I know the nervousness will fade with time. The first few nights home might be spent watching him sleep to make sure he's still good. 

We really are so very grateful for all the support we've received throughout this whole ordeal. Prayers have been answered several times over. And we have the readers to thank for it. Jackson has been in very good hands here. We just pray that he's in just as good hands at home. 

And I'm happy to report that Blair is doing great too! She continues to lose tubes and today was taken off her oxygen. She's on room air! Thank you for your prayers for her too. Means so much to have so many people that you don't even know praying for child. I know Blair's family appreciates it as much as we do! 

Here are a few pictures of my tubeless little big Jack :)

Mommy's Day Out!

Last night was an eventful one. Jackson cried and fussed all night long. The wonderful nurses took pity on me and fed him and passed him around to be held. All. Night. Long. So mommy got some sleep. This morning was much of the same. So I called in reinforcements (Ted) and made him come and help out. There was no way I was going to be able to eat, pump, etc while holding Jackson in my arms. And Jackson was finally asleep when Ted walked in. Go figure! 

Anyway, we've decided he's got his days and nights mixed up. In true newborn fashion, he slept all day. Which means tonight is going to be an adventure! I had forgotten about these things. 

When Ted arrived, he decided I was very much in need of some time away. And I couldn't have agreed more. So I went and picked up Lucy from the sitter and we headed home to play! And nap. And we played and napped. It was wonderful! And very much needed. There is a picture below of the fun we had :)

Things were good while I was away. Jackson's oxygen was turned off. He's now breathing room air just like us. There's talk of us going home tomorrow, Friday, or even Saturday. Ted and I have to pass a "feeding tube insertion" test first. We actually have to insert Jackson's feeding tube to be able to take him home. Just in case he should decide to take it out himself. He also passed his hearing test today! 

In other news, I'd like to thank some people. Thank you to my in-laws for helping with Lucy and to my father in-law for working long hours at the shop so Ted can be here with me at the hospital. Thank you to Whitewater Crossing Christian Church for all the meals you've been providing for us. It's helped a lot! Thank you to Brooklyn for Jackson's first picture in his room. Thank you to the Thrash family for the E-card and Jackson's second picture in his room. Thank you to my mom and sister for giving up their lives at home to come and help with my chaotic life. And thank you to everyone for your continued support, prayers, thoughts, emails, messages, calls, etc. It helps so much to have such a strong support system. Your support has meant so much to our family during this time. I know we're not out of this yet, but I thought I needed to stop and thank some special people. 

Please keep up the prayers for Jackson and Blair. Jackson has had such a great recovery because of all of you. So thank you from the bottom of our hearts!! 

Happy 2 week birthday!

Today is Jackson's 2 week birthday! Hard to believe 2 weeks has passed already! It has flown by. And he's accomplished so much in those 2 short weeks. He was born at a hospital where they don't let people give birth. He had and is currently recovering from open heart surgery! He's a champ!! 

We continue to face the challenge of feeding. His heart rate has been great today. No issues of the low heart rate from yesterday. He got his picc line out today. Other than that, we've dealt with feeding. He takes a good amount from the bottle, but the rest has to go in his feeding tube. They increase the amount he should be taking daily. So today he should be taking 65 ml from the bottle. He only takes about 30 ml's from the bottle, so the other 35 is put in his feeding tube. Tomorrow his amount will increase to 75 ml. That is the struggle that we face. 

Meanwhile, life in the step down unit is a lot like home, minus the home part. I take care of him day and night. Last night was a night of not much sleep. Much like the life of a newborn. I'm thankful to have this struggle with him. Hopefully, it'll make the first night at home easier. However, momma needs some sleep! 

Special thanks to a FRIEND today for making me feel better :) I so appreciated it! You da best!! 

Please continue prayers for Jackson and Blair's recovery. They both need your prayers and positive thoughts and support. Mucho thanks!! 

Here are a few pictures from today...

Lucky number 13

As it turns out, 13 may be Jackson's lucky number. He was moved to the step down unit today on his 13th day of life! 

He did have a minor setback though. His heart rate started dropping. We're used to him being in the 100's, and he dropped down to the 70's. The doctors looked at him and said he was good. It would fix itself over time. Apparently, this is a result of the balloon procedure he had done at birth. If the doctors aren't concerned, then neither should I! And they still sent us to the step down unit with this :)

Now the biggest issue, other than the heart rate, is his feeding. He is proving to be a little interested in the bottle but not much. Hoping his interest in the bottle increases.

So the step down unit is nice. However, it's a bit overwhelming for this momma. We went from the CICU where they did everything. They even picked him up and handed him to me to hold. I didn't get him out because of all the wires, tubes, etc. In the step down, it's pretty much up to me how things go. If I want to get him out and hold him, I do. If I want to change his diaper, I do. The nurses come in when his alarms go off or every 4 hours for their assessment. Much more relaxed down here. I know they are preparing us to go home. But to go from doing hardly anything to doing everything, it ovewhelms this momma!

Please say a little prayer for Jackson's continued recovery and for Blair's continued recovery. And a little one for this momma too :) if you don't mind. 

Here's my little big Jack :)

Irish Blessings

May the sun shine, all day long,

everything go right, and nothing wrong.

May those you love bring love back to you,

and may all the wishes you wish come true!

The blessings of the Irish were on Jackson today. He had a great day! He lost 2 more tubes today. All of his medications are now by mouth, instead of IV. I was lucky enough to not only hold my baby boy but feed him twice today! 

Several weeks ago, we met with one of the two pediatric heart surgeons at Children's. The surgeon explained the procedure that Jackson would have done (arterial switch). He also explained all the potential side effects, set backs, etc. He told us that the biggest obstacle we (as parents) would face once the surgery was over would be feeding. These babies that are born with heart defects that require surgery right away do not get the opportunity to eat/nurse right away like most babies. So getting them to eat is the biggest obstacle we would face. That is the struggle that we are now facing with Jackson. He'll eat a little but not nearly as much as he should be. He might actually get a feeding tube put in to assist him in his eating if he won't take the bottle. 

The best news came this morning with rounds. The attending doctor on duty told me that they have one more tube to take out. They'll take that out tomorrow morning. Once that is out, we should be sent to the step down unit...I cried...Happy tears! I can't believe that we could be sent to the step down unit and kicked out of the CICU! This means we could be home in a matter of days. We are trying not to get our hopes up. We are expecting setbacks to happen. We're kind of just waiting to get the news that Jackson has taken a step back. And that would be fine! We're hanging on his schedule. When he's ready, we'll be ready. 

Here are a few pictures from today's snuggles :) 

Thank you for all your thoughts and prayers. They have definitely worked! Both Jackson and Blair came out of surgery a success. Now they need them for recovery. Please continue to pray for them. They are strong little babies who need your thoughts and prayers. 

Look mom...NO BREATHING TUBE!

Today has been a good day in the CICU. Jackson was taken off another medication. And we also saw 2 more tubes removed! We couldn't be more proud of his hard work! One of the tubes that was taken out was his breathing tube. Yay! He's now on a nasal cannula. This just gives him a little extra oxygen. 

I watched them take out his breathing tube and give him the nasal cannula. This mommy has become quite the observer lately. I watched them remove his breathing tube the first time, I watched his picc line being put in, I watched the chest tubes be removed, and today I watched the breathing tube come out again. I might end up in medical school when all this is over :) Just kidding. Those who know me well know that I would never be able to stomach this! I guess when it's your child there, you don't want to miss anything! 

One of Jackson's doctors told me today that if he continues doing this well, she could see us in the step down unit by Tuesday or Wednesday and home by the weekend!! I was speechless! They are going to let me take this little heart surgery patient home?!?! We are trying really hard not to get excited about this prospect and get our hopes up. It's really hard not to. We know setbacks happen. And we know that we will experience them. But the idea of being home next weekend makes me smile a little :)

Please continue to keep Jackson in your prayers. His recovery is such an important step. Also, please keep Blair in your prayers throughout her recovery too. The Schwieterman and Watts families thank you very much! 

Here's Jackson today, a few less tubes and wires :) Isn't he handsome?

Rockstar!

Jackson is doing great! The doctors made it a point to tell me today how much of a rockstar he is. They said he's doing everything that they've asked him to do. We couldn't be more proud of our little man. 

Here's what's happened since the surgery: 

1. He did have a catheter put in during surgery that initially they weren't using. This catheter was to drain the fluid that had built up in his little body. He was draining it himself without the need of the catheter. However, through the night, the nurses needed to start using it. No big deal. It was completely expected that he would need to use that. This is why they put it in during surgery, they just had it pinched off. He's using it now!

2. He has been taken off of 2 medications.

3. He has had 3 tubes/wires remove. They removed the LA line. This line went right to his left atrium in his heart and measured the pressure there. The pressure has been good all night and all day today. So they said take it out! He's also had his two chest tubes taken out. These drained off excess fluid around the heart. The tubes didn't have fluid coming out of it 24 hours after surgery, so they said take that out too! 

4. They are weaning him off of other medications. And the ventilator! The plan is to have ventilator taken out tomorrow morning. 

He may not look any different to you in this picture, but I promise there are a few less tubes and wires! 

Like I said, he is a rockstar!! 

On the other side of this is mom and dad. Mom and dad are struggling to find balance in this chaotic situation. We are struggling to find balance between being with Jackson at the hospital and at home with Lucy. Let me tell you, this momma's heart breaks not being able to be with both of them! I know we need to rest too. I know I just had surgery. But it is so hard! I am dealing with a lot of "mommy guilt" for not being able to be with both of them. I know every situation is different and every person is different. And we have to find what works for our family. And that changes from day to day. 

So last night I stayed at the hospital. There was no way Ted was going to be able to get any sleep in Jackson's room last night, so I sent him home to sleep. There are sleep rooms you can sign up for in the CICU. Last night I was able to get one. Tonight, we're both at home. We needed some Lucy time, and she needed some mommy and daddy time. Tomorrow? Well, that will have to wait until tomorrow.

One day at a time...

Surgery Day...

Today was a very long day. We escorted Jackson to the operating room around 8:15 this morning. Updates came about every 1-2 hours beginning about 9am. We were given our own private waiting room. Thankfully, we didn't have to sit with all the other families in Same Day Surgery. That would have been awful. We waited for updates. 

Each update came with good news and good "feelings" in the OR from the nurse who was giving the updates. With each update, I let out a little bit of a breath I didn't realize I'd been holding in. 

The final update came about 5:15pm from our hero himself, Dr. Morales. He came in and said surgery went very well. Jackson did great. With that, the last little bit of the breath that I was holding onto came out. And I cried. And I cried. And I cried. And then I hugged him. And then I thanked him. 

It wasn't until about 8pm that we were finally about to see Jackson. He looked so much better than we thought he would. We were truly prepared for the worst. He looked good! Sure he's got lots of tubes and wires everywhere. Those will come out. Those will all disappear slowly, one by one. Until eventually, he has none of them. We're not patient parents, but we can be. We will be patient parents. 

Our prayers have truly been answered. We know he's not out of the woods yet, but we're one step closer. We know we'll have tough days ahead. But he's had his surgery. That (in our opinion) was the biggest hurdle. 

A HUGE thank you to everyone for all your positive energy, prayers, thoughts, well wishes, you name it! We truly couldn't have gone through this without your support. Please continue to send all those Jackson's way. He needs them throughout his recovery. 

Throughout this journey, we've tried to be honest and truthful about our thoughts, feelings, and experiences. What would a blog be if it was untrue? So I've added a picture of Jackson after surgery below. He's a strong little man!! 

Tomorrow's the Day (for real this time)!

So as you may already know, Jackson's surgery got bumped today. The cardiology team had three cases that were more emergent than Jackson's. One case was even flown from Children's in Columbus to Cincinnati Children's. So we were reminded that things are taken "one day at a time" around the CICU. I would hope if Jackson were one of the emergent cases, that the family that got bumped would be understanding. So we were. It stinks. But at least he's strong enough to wait another day. 

However, this is not a fun roller coaster to be on. The only people that got some sleep in our house last night was Lucy and Poppa Jim. Gaga (my mom), Ted, and I didn't sleep. It was tossing and turning. Anxious and nervous. It's like we got on the roller coaster...headed up that first really big hill...and then the roller coaster went back down that big hill. We're ready to get off this roller coaster and find one that's more fun! 

Some good things did come from today though:
1. More cuddle and snuggle time with Jackson for both mom and dad.
2. I changed his diaper (for the first time)!
3. I fed him just a little from the bottle.
4. I got to change his diaper again!

Numbers 2, 3, and 4 may not seem like a big deal to moms and dads out there, but for this momma, who has only been able to hold her son for little bits of time, it was a huge deal! He, of course, cried and cried while I was changing his diaper. Apparently, he's not a fan of having his diaper changed. I don't move quite as fast as the nurses do, but I promised him I would get better. 

I'm thankful that he's able to be strong enough to hold on one more day for surgery. I'm also thankful for those little bits of normalcy that I experienced today (holding him, feeding him, and changing his diaper). 

Ted is thankful that Jackson's surgery was postponed until tomorrow for different reasons. His involve superstitions and the number 13 :) 

Again, I ask for your prayers and positive thoughts to be sent Jackson's way for surgery tomorrow. He is a strong man, but he needs all the prayers and thoughts he can get. Thank you all so much!! 

Tomorrow's the Day!

All surgery consent forms have been signed. All conversations have been had. 

Today consisted of snuggle time with my favorite little man. 

He found his fingers today, instead of the pacifier.

Please keep Jackson in your thoughts and prayers tonight and tomorrow. He is a strong little fighter and will prove that tomorrow but prayers and positive thoughts will help :)

Picc Line Champ!

At 8:00am, we found ourselves on the way to Children's. We had a meeting scheduled with the surgeon to go over all the details of the surgery, along with the "worst case scenarios". We arrived a little late (due to weather and traffic). We were informed by our nurse that there had been an emergency case that the surgeon had to do and would be unable to meet with us until later...maybe.

Later came and went....and went....and went...But that's ok. If my child were the emergency case, I would hope the parents waiting for their meeting would be understanding. And we were. We found other things to do with our time, like snuggling with a certain little man. 

Jackson was scheduled to get a picc line at about 2:00 pm today. A picc line is an iv that can stay in a lot longer. Anything put in his picc line would get to the heart and the rest of the body pretty fast. A standard procedure for Jackson's surgery. Around noon-ish, they told us that it was moved to tomorrow. They came back about 15 minutes later and said, "just kidding. we're going in 5 minutes!". Mom and I headed down with Jackson to get his picc line. He was a champ! The only time he cried was when they cleaned his arm with the alcohol. He didn't cry or fuss when they stuck him with the needle (mommy did), or when they pulled the needle out, or even when they were taping it off. Nope! He only cried with the cold alcohol swab. He's going to get through this with flying colors!! 

We left the hospital around 5:00ish, only to be called back to the hospital to meet with the surgeon. Of course, Ted pulled a u-turn and headed back to Children's. We met with our awesome surgeon and talked all about the procedure, risks, etc. He was very confident and assured us over and over again. He said Jackson was in great hands and all would be fine! He made this mommy and daddy feel much, much better. 

So they've removed Jackson's feeding tube to begin the prep for surgery. They are letting him take a bottle, or what he'll take from it. He doesn't take much. Any he takes would be considered a "bonus". His nutrition comes straight from TPN (Total Parenteral Nutrition). A mixture of all the nutrients he needs. 

Tomorrow will find more surgery preparation and hopefully some more snuggle time :)He did get his footprints done today. 

He's our little champ! 

Keep the thoughts, prayers, and well wishes coming! Jackson feels them and thanks each and every one of you for them! 

Snuggles

We went to visit Jackson and have some quality time with him today. He's doing very well. The little bit of extra oxygen Jackson was getting has been removed! He's breathing room air, just like everybody else :) 

He still has his NG tube, which breast milk goes through to his belly. They use that if he won't take all the milk he's supposed to be getting. He would only take a small amount in the bottle. So they have to put the rest in his tube. That's ok though. He's taking milk. 

We meet with the surgeon tomorrow morning to go over the procedure for the surgery and all the risks, etc. We've been told this meeting is very hard because it goes over all the worst case scenarios. None of which we're going to encounter. Nonetheless, not looking forward to this meeting, but it has to be done. 

Thought you'd like to see some of our snuggles from today :) 

Please keep Jackson in your thoughts and prayers. Tough days ahead. Tomorrow is Blair's surgery. Please say an extra prayer for her tonight. Thank you!!! We are very grateful! 

No news is good news

After calling and checking on the little man, Ted and I headed up to the hospital to visit him once my mom arrived to wrangle Lucy. 

He's doing well. They are in the process of weaning him down on the liters of oxygen he's getting and weaning him off another med. He did take part of a bottle today. Yay! That's good news! Their goal is to keep weaning him off medications and increasing the amount of breast milk he takes. The goal is to get him to take a bottle before surgery. He'll be more likely to take it after surgery if he takes it before surgery. 

He's taken to a pacifier like a champ though. And as you can see, made a new friend...

Thanks for all your thoughts and prayers! We appreciate them so much!!

Keep them coming :)

A special thanks to the Kiefer family for the awesome lasagna and brownies tonight. They were delicious!! And for the adorable outfit for Jackson. Can't wait to see him in it :)

2 steps forward and 1 step back

We were told to take things one day at a time. We were also told there would be great successes and then there would be setbacks. Yesterday was a good day, Jackson was taken off the ventilator and given breast milk. Those were huge achievements. 

One of my nurses came in and woke me up at 6:00 am to tell me that they had decided to give Jackson a blood transfusion. He was ok. He just needed a little extra blood. The nurse said he was ok to go back to sleep. So I did. When I did wake up we headed up to the CICU to get a report for ourselves. 

Jackson had taken such big steps forward that he needed to take a step back. They assured us that he was ok and that this would happen a lot. He did get the blood transfusion. His oxygen saturation levels were falling lower than they would like. They weren't dangerously low, just low enough that they should be try to fix it. So they gave him a little extra blood. And he did great! He definitely benefited from a little more blood. He was also put back on one of the meds that they had taken him off of. He just liked being on it more. 

We learned during rounds that he was to get a feeding tube to get some nutrition. They didn't want to make his little body work overtime trying to breathe and trying to eat. So they gave him a feeding tube that runs in his nose to his stomach. They're giving him tiny amounts of breastmilk. But he's getting breast milk! 

I was discharged today. Ted and I had a long discussion last night about what our plans should be once I was discharged. We decided that we should go home and spend some time with Lucy, sleep at home, and also spend some time at the hospital. He is quick to remind me that I just had surgery too and need to take it easy. I hate being away from Lucy, but I also hate being away from Jackson. If the CICU staff could just come to my house and take care of him here, there would be no issue! I could be with both of them at once!! That would be perfect! 

Anyway, once I was discharged I tearfully said goodnight to Jackson. I would see him again tomorrow. I know he's in very good hands. We came home and I took a short nap. Lucy arrived shortly after . The run into my arms and the hug that she gave me and the "mommy!!!" that came with it was one of the sweetest moments. I think she might have missed me too :) 

I've called to check on my little man and he's doing great! I think he knew I needed to be with Lucy too :) We'll head back to the hospital tomorrow for some Jackson time. We're also meeting with the surgeon to finalize surgery. Looks like it is scheduled for Wednesday morning. 

As always, please keep the prayers coming! Jackson gets stronger by the day. That's all thanks to the power of prayer. 

I'd also like to ask you to send a few extra prayers to Blair. Through a good friend, we found out that little Blair was born yesterday also with transposition of the great arteries. The difference is that she was undiagnosed until after birth. She was flown to a Children's in Chicago where I'm sure she'll receive excellent care. 

Today was a good day...

Today was a very good day for Jackson. Ted ended up having to make a run to the dentist. His temporary crown came off. So he missed out on this mornings festivities. 

I was able to attend morning rounds. This is where the doctors, nurses, fellows, respiratory therapists, etc, all meet in Jackson's room and go over how he did during the night and the plan for the day. The doctor I chatted with today told me that in the CICU (cardiac intensive care unit), they take things one day at a time. He said to focus on today and today's goals, which were big ones! Today's goals were: 1) go off the ventilator and 2) get some breast milk by bottle. 

Goal #1 was a success! They took the ventilator off while I was there. And he took it like a champ! He barely even cried. They put in a tube with supplemental oxygen going to his nose (cpap). This still gives him a little extra oxygen, just not a ventilator. I was able to sneak a few pictures in between the vent coming out and the other tube going in. He's a handsome big guy! 

Goal #2 was semi-successful. He did take about 2 ml of breast milk through bottle today. However, his breathing turned a little difficult for him. He most likely has some fluid built up that is making it harder to breathe. The doctors didn't think it was too bad, but they did recommended holding off on more breast milk until he gets time to calm down and process the vent being removed. 

Because his vent was removed, this happy momma was able to hold her baby boy today! That was by far the highlight of my day! And I did it not just once but twice! He snuggled right into me. Definitely the place he's meant to be. And I can't wait to do it more often!! 

My computer wouldn't cooperate last night. So I wasn't able to post a picture of our private wing. This is Beyonce and Jay Z's private floor in the hospital. 

We cannot even begin to thank everyone for all their prayers, thoughts, well wishes, etc. It means the world to us to know that Jackson is on so many people's minds and hearts. Please continue them. They are being heard and answered! There's still very rough roads ahead, but with all your support we can get through them! 

Beyonce & Jay Z

Ted and I have decided that we are Cincinnati's Beyonce and Jay Z. We have the entire hallway at Children's Hospital to ourselves! The only other people in the hall are nurses. So not only do we have the entire hallway to ourselves, we have our own private nurses. Just call us Beyonce and Jay Z. 

Today was a good day for Jackson. He was weaned from two medications and his ventilator has decreased. They are hoping to remove his ventilator tomorrow. With that comes even better news....we will finally get to hold him! And he will also begin getting breastmilk from a feeding tube or a bottle! That's also big news! We didn't think he would get breastmilk until after his surgery. He's moving along and progressing quite wonderfully.

We don't have a surgery date yet. The surgeon told us yesterday that they will wait until all Jackson's systems are stable. In a way, the longer the better. It will most likely be sometime next week, assuming he doesn't get any infections in the meantime. Keeping our fingers crossed and praying that he stays healthy! 

He spends his days hanging out in his cozy room with his awesome nurses. We've figured out that he's quite ticklish. And he likes to kind of be left alone. When the nurses have to change bandages, move wires, etc, he gets a little agitated and angry with them. And then his machines start beeping. He gets that from his father :)

Lucy spent this snow day at Grandma and Grandpa Schwieterman's. She loved watching Stan shovel the driveway and feed the birds. She is in great hands! Ted went over there today and showed her pictures of her baby brother, Jackson. He said she was into the pictures until she saw one of me and yelled, "mommy!!!" Then she wanted to play with his phone. So we're going to keep working on the whole brother thing with her. 

We are so looking forward to holding and snuggling Jackson tomorrow. There will be lots of pictures of those moments. I've included a picture of the sweetest little feet. Who doesn't love some baby feet :)

As always, please keep the thoughts and prayers coming. We truly believe they are being heard and answered. Keep up the great work!! 

Happy Birthday Little (Big) Guy!

Last night consisted of very little sleep. Between the nerves, the anxiousness, the dreams, nightmares, and of course my husband snoring away, I slept very little. A combination of Christmas Eve night and the night before a major surgery. Nonetheless, the alarm went off at 4am. Ready or not! 

As I gave Lucy kisses goodbye, the tears were flowing like water. That was one of the hardest parts of today. We've been told that as long as I'm a patient, Lucy can't come and visit me here. Damn lockdown flu restrictions! So we have a sneaky plan to let me see her once I'm no longer a patient here and just Jackson's mommy. She was left in the great care of my mom and my sister this morning. She was ready for Jackson's arrival. 

C-section went as planned (and rehearsed). He was a little blue when he came out. So they took him right over to the Cath Lab to assess him. They decided he needed the balloon procedure right away. The doctor informed us that his color and levels went up immediately with the balloon. We were also told that had I delivered at Good Samartian Hospital, he probably wouldn't have survived. The transport time between Good Sam and Children's would have been too long and cost him his life. Thankfully, we are exactly where we needed to be for him. 

Since the balloon, he's had one setback. His blood pressure dropped. They were able to stabilize him quickly and proceed from there. Since then, he's done great! They're are weaning him off some of the meds already! The next step is to keep him stable and continue weaning him. Ted was able to go up and see him within a few hours of being born. Like a good husband, he took lots of pictures and even did some facetiming with me so I could see my little (big) man. I was able to go up later in the evening and spending some quality mommy time with him. He is perfect, minus the tubes and wires, and looks just like Lucy! 

As Ted took pictures and sent them to me, everyone in the room kept saying he looked big! Much bigger than the 7 pounds 11 ounces that they told us he was. There was a reason for that...he's not a small 7 pounds, he is actually 9 pounds 9 ounces!! Guess my little peanut isn't such a peanut after all :) He's still absolutely handsome and I can't wait to hold him! 

Please keep your prayers coming! It was truly divine intervention that decided that we should deliver at Children's, which ultimately saved his life!! We are so very thankful and grateful for the outpouring of support for Jackson. Thank you all so very much! 

 
   

The beginning...

Jackson's journey began the morning before a Kenny Chesney concert. I woke up and took one (of many) pregnancy tests. To my surprise, I was pregnant! We were so excited! Of course, this meant I couldn't partake in the drunken debauchery that has occurred at many of the Kenny concerts of the past. That was ok. Ted and I were adding to our little family. Our family of 3 was now going to be a family of 4! And we couldn't be more thrilled. 

Besides the mandatory evacuation to the interior of Paul Brown Stadium, due to the thunderstorm that decided to plant itself over the concert. The concert was fun and worth staying sober for :) 

Fast forward a few months later and we found out we were having a boy! I asked the ultrasound tech to double-check. I couldn't believe we were going to have a baby boy! Ted was so shocked, he was silent. We called everyone and asked if they'd go to football games down the road for our new little boy, if they'd umpire a game or two of his, and if they'd help coach this little boy in little league. Of course, everyone happily agreed. 

The ultrasound tech told us the baby boy wasn't very cooperative and couldn't give them all the images they wanted and needed. So we'd have to come back several weeks later to try again. We went back at the beginning of January. And he still wouldn't cooperate! We were assured that there was nothing indicating a problem, they just couldn't see if there was a problem. Another ultrasound was ordered at Good Samaritan Hospital in the Seton Center. 

We arrived and was prepared for him to show everyone all the stuff they needed. Yet again, he wouldn't cooperate. One more ultrasound was ordered. So January 29 we dropped Lucy off at the sitter and headed to Good Sam for our last ultrasound that would definitely show Jackson was just fine.

The ultrasound tech was very nice and worked very hard to get all the images she needed. She informed us that her images just weren't very good. She was going to see if the doctor could get better ones. A light bulb went off in my head - they had told us if there was a problem, the doctor would come in. Think positive Amanda! He's fine. 

The doctor came in and chit-chatted her way through the ultrasound. She asked all about Lucy, me, and Ted. Finally, I asked if there was a problem. And she said the words every expectant mother dreads to hear - "yes". As I'm struggling to breathe (from crying so hard), she explained that Jackson had transposition of the great arteries. This occurs when the arteries go to the wrong places. It is fixable, but it would require open heart surgery within a week of him being born. We went from there to see my OB (that I cried to), to see the cardiologist at children's (to which I continued crying to), and finally home to see Lucy (and yes, I continued the crying fest). They all told us the same thing-"he'll be fine, he'll go on to live a normal life, he can still play sports and have a normal childhood, it'll be rough in the beginning". Hands-down. worst. day. of. our. lives.

Since the diagnosis, we feel we are experts on transposition. We have found that only 30% of children born with this find out in utero. Most babies are born with this and only find out after birth because they turn blue. We are so thankful that is not the case with us. We also found that 60-70% of babies born with transposition are boys. Children's only deals with about 10-15 transposition cases a year! Not rare but not very common either. 

We were also informed that Children's doesn't deliver babies there. They only do c-sections and emergency ones. The last delivery they had there was about 2 months ago. They decided my delivery should be there just to ensure that there is no wasted time for him between birth and the potential balloon that might be needed. 

On Thursday, we met with the delivery team at Children's. It was quite intimidating. Ted and I walked into a board room with 11 other people seated around the table. There were cameras recording our meeting and microphones hanging from the ceiling. My high-risk OB doctor was there, a cardiologist interventionist, imaging, other doctors, nurses, etc. They were all there to tell us their role in the delivery and stabilization of Jackson. They also informed us that should I go into labor on my own before Tuesday, there is a phone tree that will be activated for me. I assured everyone that I am not important enough for a phone tree. They assured me that I am :) 

Here I sit, several ultrasounds, non-stress tests, fluid checks, OB doctors visits, and cardiologist appointments later. He's scheduled to arrive Tuesday morning (March 5). He will arrive via c-section at Children's Hospital. He'll be here in less than two short days. We're ready (and not ready), scared, nervous, anxious, etc. All the emotions you can feel rolled up into one. 

We've got our plan and the doctors have their plan ready. He'll be born, assessed, possibly have a balloon placed to keep blood flowing, and get ready for surgery. Within a week of life, he will have his open heart surgery where they will cut the arteries, at the heart, and reattach them. Fortunately, my recovery will be at Children's too. I'll be a floor or two away from him. Much better than a few miles down the road. 

We can't thank everyone enough for all their thoughts, prayers, well wishes, food, etc. We have such a great, strong support system!! We are very grateful and thankful for that! We know that our hardest days are ahead of us. With a support system like we have, we are sure to get through this with flying colors. We'll look back at this some day and smile, knowing that Jackson's Journey made us all better because of what we went through.