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.