Getting back to normal

Our lives have been hectic to say the least over the last week! We have finally got everything unpacked and put away, still working on laundry though (any volunteers??). Jeremy and I are getting used to our new routine and it's going pretty well so far. We are getting the hang of functioning with little sleep ;) We can even do middle of the night conversions from oz to mL in our heads when making his formula...I feel pretty accomplished about that! Hehe!

Jensen is doing awesome! He had his first cardio appt at home and it went great. His sats were lower (around 74/75) than in Philly (77-80). His cardio wasn't too concerned because everything on the echo remained unchanged. We will be going to Raleigh or Cary weekly from now on to see his cardiologist.

Next week will be very busy. I will be making an appt with his home neurologist and will be getting in touch with his ENT and endocrinologist. Jensen also has an appt with his pediatrician next week. Lots and lots of doctor's appts...that's also our new routine!

Here's Jensen enjoying his house :)

Pics from home!

Putting him in his crib for the very first time!

Happy to be home in his oversized sleep sack =)

First bath at home

Our little monster

Jensen adores his nap nanny!

Those hands touched our baby's heart <3

Last picture at the hospital

Home at last

We made it home with our sweet boy :) I cannot describe how relieved we are to bring Jensen home. The trip was stressful to say the least but Jensen slept through most of it. We were anxious about how things would go at the airport with a newborn, medical equipment, milk and medicine. Everything went much more smoothly than we thought. The only thing that held us up was the milk. It had to be tested and then it set of an alarm. While we were waiting for a supervisor the TSA agent noticed the milk was in a CHOP cooler. She turned out to be a CHOP heart mom herself and after we chatted for a minute Jensen and I just got 'pushed' through the line...apparently the food wasnt an issue anymore! Meeting other heart moms is fabulous :)

Jeremy and I are beyond exhausted trying to get ourselves organized. We have a ton of bags to unpack and Jensen's med supplies to put away. There is only about a half hour between his feedings so there is hardly any time to get things done around the house. Hopefully in a few days we will have more of a routine and things will be easier.

Here we go on to the next leg of this journey...

We are being discharged Tuesday!

Yes! Yes! Yes! We finally get to bring our baby home! Jensen just finished his car seat test, tomorrow we have lots of loose ends to tie up, then Tuesday we are being discharged! We will be very busy tomorrow getting all the last minute things together: getting his feeding pump, pulse ox, scale, NG tube supplies, scheduling appointments with our home doctors, packing, buying plane tickets, etc...  It is so worth it though! We are beyond excited to be so close to going home =)

Jensen was very happy to see his favorite New Jersey-ians Sandy and John today! They have been such a blessing to us and we are so happy they could visit our little man before we went home. Now that we will be home with Jensen, we would love to have everyone meet him, but we have to keep his best interest in mind. Our doctors have told us to minimize his interactions with people to avoid any type of illnesses before his second surgery. The time between the two surgeries (interstage) is the most critical period of his journey and we don't want to jeopardize his health in any way. We know that so many people love this little boy and we promise you will all get to spend time with our little man. We will just have to post-pone it until his health is a little more stable =)

We cannot express our gratitude to all of Jensen's supporters. People we have known for years and people we have never met have continually prayed for us, supported us, and raised awareness for Jensen's condition. There have been many fundraisers, donations, and prayer chains from people all over the country. Jeremy and I are overwhelmed at everyone's generosity. Your prayers and kindness have touched our hearts...we feel so blessed! Thank you all so much for being on this journey with us. We have come so far but still have a long way to go...

Waiting on weight gain

Jensen had a good day yesterday.  He had only one spitting up episode and took his bottles like a champ. His weight was up (only slightly) to 4.13 kg. Hey, progress is progress. He had a milk scan to look for reflux and to see how fast his stomach empties. Everything looked ok so now his team just needs to continue adjusting his milk formula so he can gain weight with minimal reflux. His morphine is now down to once a day, thank goodness! He was also started on Enalapril for his blood pressure. This will help to stave off any remodeling that can occur around the site of regurgitation at the aortic valve. The regurg is only classified as mild (used to be listed as moderate) but they want to be extra careful and prevent his BP from getting too high.  At this point the meds he will be going home on are:  Aspirin, Enalapril, Hydrocortisone (this was simply a stress dose to keep his steroid levels in balance during the surgeries, takes a long time to wean), and his 2 reflux meds. Hopefully we won't have to add any more to this list!

Jensen had another visitor yesterday! A fellow heart mom, Andrea, came to CHOP to donate toys to kids on the 6th floor. She and her HLHS cutie patootie Caleb saved a special toy for Jensen! It has been so great to meet other moms with the same experiences. These ladies are always so helpful and encouraging, I'm so lucky to know them! Thank you Andrea and Caleb =)

I love this little guy so  much!

Jensen and Mommy <3

Jensen and Daddy <3

Oh the many faces of Jensen (or Jeremy since they look so much alike!)

Sneaky face =)

Talk of going home

Jensen's echo and ultrasound looked great today! He has fantastic collaterals formed around the blood clot in his leg, so he is getting adequate blood flow. His Sano looks wide open, as does the stent in his pulmonary artery. Dr. Fuller thinks there is no need for him to have a cath before he goes home (or during interstage either). She is hoping to get us discharged at the first of next week!

There are still some issues that I think will keep us here longer. Jensen HAS to gain to weight and get his acid reflux under control. He is taking small feeds by mouth, but ends up burning too many calories doing that. He still needs to practice with a bottle to maintain his sucking and swallowing skills, but he needs to gain weight badly. Today his attending decided to keep him practicing with bottle feeds (only in smaller amounts of milk) and to keep giving him bolus feeds through the NG tube throughout the day. In addition to this, they have put him on continuous feeds at night with his fortified breast milk. Hopefully this will help give him some calories without him working so hard! Keep your fingers crossed our boy gains some weight over the weekend!

Feeding

Jensen started his oral feeds on Monday and ended up taking 0.5 oz. The mixture is so thick he had a hard time getting any out and was exhausted by the end of the feed. Yesterday, speech made his formula a little thinner and he did wonderful! He took 0.5 oz that morning and made it look easy compared to the day before (although it was still tiring for him)! For his afternoon bottle, he took 1 whole ounce! That was a huge improvement to make in just a few hours. Also, he had gained a little bit of weight yesterday =)

Jensen is not only kicking butt on his bottle feeds, he has been on room air for almost 24 hours now! Jeremy and I even had our nurses turn off his monitoring screen so we can't see his sats. We are really comfortable with where he is with his oxygen and we need to get used to not having a screen tell us that he is dipping. One step closer to home!

Parents in the CCU have a big checklist of things to do before you can be discharged. It includes NG class, CPR, medicine administration, giving feeds, car seat test, etc. We had done everything we could, except for putting in his NG tube. We were waiting on it to either expire or for Jensen to pull it out himself. Well, yesterday it expired. Jeremy and I rock, paper, scissor-ed for it, and I won (or lost, depending on how you feel about torturing your child). I was so nervous and just knew I was going to traumatize my poor kid. Much to my surprise, it was super easy and Jensen didn't even cry! I was so impressed with my boy =)

No one has given us a discharge date, but I feel like our time in Philly is almost over...thank goodness! We are so ready to be home. We're tired of living in this hotel, eating out for every meal, and having to go to the hospital to spend time with our baby. We can't wait to be a family in our own house!

Sweet boy <3 He slept through the night for his mommy!