Wednesday, July 24, 2013

We moved to STEP DOWN!!!!!

Today has been the best day! Jacob has made so much progress today I think my heart may explode!



I woke up at 8:30 to the surgical PA coming in to take out Jake's RA line. FINALLY that thing was coming out. I knew once it was out Jake would get up and things would start to get better but I had no idea he would do as amazing as he did. It was actually pretty interesting to see that they just pull out the line at the bedside. The RA line goes right into his heart. They just snipped some stitches that were holding it in and pulled it right out. They had given him some morphine so he would be calm but he barely flinched. When they took the line out his original chest tube bleed a little more than I liked, it worried me but luckily it quickly stopped. They said it is normal especially where it has been in so long.

We let Jake sleep off the morphine for about an hour or two and then it was time to get up! Occupational therapy came in first. They got him to sit on the edge of the bed then had him walk to a chair.

Ready to get out of bed.
I thought his legs would be super weak from being in bed all week but he did so well. He stood up by the chair for a while and then sat on my lap and played with puzzles and colored. Before today Jake would not do anything. What a difference getting out of bed makes!

When they were done, the physical therapist came by. She asked if we wanted to wait since Jake just worked with OT but he seemed like he wanted to keep going. She stood him back up and we walked around the bed to the other side.

Standing up for the first time in a week!
Walking for the first time.
Jake didn't fuss at all! I think he thought we were leaving because he started saying blankie, he wanted to make sure we didn't leave it lol. He walked around the bed and we put him back in it to rest

VIDEO OF JAKE WALKING

I thought he would pass out from all of his hard work but he stayed awake. Since he was still awake we decided to take a wagon ride around the unit. It must have been super exciting because half way through the ride he bent down and started to fall asleep lol. All of his hard work finally caught up to him.


A short while later we were told we were moving to the STEP DOWN UNIT! It is really just the other end of the hall but it is a huge step toward going home. The only thing still keeping us here is the fluid coming out of Jake's chest tubes.

We got all moved into our new room and Jake wanted to go on another wagon ride. This one lasted for well over an hour. Every time we got back to the room Jake would point to the hallway and say "More Ride!" A good friend of ours from home sent Jake a baseball to have his care team sign so he would have a keepsake from his surgeries. I thought that was such a great idea! So during our ride we visited some of our favorite doctors and nurses and got their autographs. They loved the idea too. Thank you Michelle, Pete and Jacob. Our ball is almost full of signatures already!
 

It is really good for his chest tube drainage to keep him sitting up so we kept on strolling around the unit for a while and then we decided to bring Jake to the playroom. He had fun playing with a racetrack they had. Aidan was mad he couldn't go but this playroom is only for patients. I told Aidan that he had a lot of toys in Jake's room. He replied with "It is not fair, being a big brother is really hard work. I work just as hard as the doctors and I should get to play" lol. Seriously this kid is a handful. He eventually understood. This stay has been hard on him. He is 6 and is bored, can't blame him.



It is no small task getting Jake out to play. It is not easy maneuvering around those chest tubes! He has the one tube which is just a small tube with a bulb at the end. That isn't so bad. The other one that they put in for the right lung is the complicated one. It has a huge box at the end of it which keeps track of the drainage. We can't lift Jake under his arms for 6 weeks because his chest bone is healing. So we have to scoop him up under his butt kind of like a baby. So I scooped him up while Andy made sure the chest tubes were not getting caught and carried the huge box. I stood him up and he walked over to the toy. He played for about 20 minutes and then we decided it was time for a break so we went back to our room.

All of the energy he was exerting must have made his appetite come back because he was eating all day long. He went from saying no to everything and anything I would show him to wanting everything. He ate almost as well today as he does at home. It was truly amazing. Really the only thing keeping us here now is his chest tube drainage. The original tube has slowed down a ton. It is barely putting anything out tonight. I wouldn't be surprised if that comes out soon. The other tube however is still putting out a lot of fluid. Getting him up and moving will help get all of the fluid out but please pray it slows down soon so we can go home! There is really no way of telling when it will stop. Some kids only drain a few days and others can drain for weeks to a month. Only time will tell. Jake also did not need any pain medication all day. I think he got maybe two doses of tylenol today, no morphine during the day. We did give him a dose of morphine tonight around 10pm because he was saying Owie but that is not surprising since he was up and moving so much today. Still huge progress that he didn't need it all day.

We had a bunch of visitors today. Aretta Straw a fellow heart mom, dropped of some gifts for the boys. We didn't get to meet them because Jake was having his PT and I couldn't leave but the boys love their gifts. Thank you Aretta! Christa and her two little girls also stopped by. I think I mentioned on here before that her daughter Gabby was having her Fontan when we were here for Jacob's first open heart surgery. Jake was still tired so we went and hung out for a bit on the bridge (hallway that parents hang out in and visit with friends and family). Daddy stayed with Jake while he took a nap.


A little later in the day we had a very special visitor. A 21 year old HLHS survivor named Chelsea Schnell and her mom stopped by to see Jake. Of course he was asleep the whole time but it was so awesome for me to be able to talk to her and see how great she is doing.

Chelsea with Jake.
 I asked a million questions and she was nice enough to answer them all! She lives in Philadelphia and goes to college here. Dr. Norwood did her surgeries here at CHOP 21 years ago. She doesn't remember any of her surgery stays which is the great thing about them being so young. Hopefully Jake wont remember any of this either. She is living a very normal life and you would never guess she had HLHS. I can't tell you how amazing it is to see how good she is doing and know that one day that could be Jacob, just living life and thriving.




You can click here to visit Chelsea's blog

A few of her YouTube Videos:
https://www.youtube.com/watch?v=dOSYK0iQ7y0
http://www.youtube.com/watch?v=5togkirH0AU


RECAP of today:
  • Jake has been eating a ton and barely retching. 
  • The RA line is finally out
  • Jake has walked, played and been up most of the day
  • Still draining quite a bit from the right chest tube, the other is slowing down
  • We moved to Step Down! 
We had an amazing day. Tomorrow PT is going to have Jake walk around the unit. Please continue to pray for Jacob, especially pray that his chest tubes start slowing down so we can get out of here. Other than the fluid Jake is ready to go. I am hoping we will be home by next week but of course we are on his schedule so it will take as long as it takes.

If you could also pray for a little girl here named Valentina. I have hung out with her parents quite a bit during this stay. They are a wonderful family. Valentina is 5 months old and just had her Glenn (Second open heart surgery). She has had some complications and has been having a rough few days. Please pray the doctors can get everything worked out so she can get better and go home soon.

I better get some sleep, I have a feeling tomorrow will be another active day.



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Monday, July 22, 2013

Progress...

Overall it was a much better day. Dr. Spray decided that he did not want Jake to have a PICC line. He wanted his IV meds transferred over to all oral meds. He didn't want him to be under anesthesia again or risk infection in another central line. They decided it was worth a shot to try and get a IV by ultrasound guidence so we went down to Interventional Radiology to try. After 2 IVs blew and a whole lot of meds to calm Jake down they were able to get one!

We came back up and spent the day sleeping off the drug haze. Jake didn't retch nearly as bad as he did yesterday. He was able to keep down apple juice for me. He still would retch but didn't vomit any. They gave him Zofran to help with his nausea. He pooped on his own, a lot! I know TMI but if you are a heart mom you will get how important that is for all of the belly issues he has been having.

THE BEST PART OF MY DAY. I GOT TO HOLD JAKE!


He still has the RA line in (Line that goes directly into his heart). We hope to have that out in the morning. They have been transitioning his medications so he shouldn't have any IV meds after tonight.  He had some pediasure tonight and even ate a few cheese puffs for daddy. Not the most nutritious of foods but hey he ate! Baby Steps.



Aidan had a fun day as well. Child Life came in and told us that this week at CHOP they are having Camp Get-A-Well-A. She gave the boys t-shirts and a schedule of crafts and activities they are having around the hospital for siblings and patients. Aidan made wooden medallions today for he and Jake. It was just what he needed to help break up the day.



We also decorated Jacob's door and windows with Window Markers. I drew his favorite train "The Little Engine" on his door with his name. The nurses loved it.




Please keep the prayers coming. He is still draining a lot of fluid. More then they would like. It could keep us here for weeks to a month. Praying that once we get the line out we can get him out of bed and help that fluid get out of his body. We are making progress!




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Sunday, July 21, 2013

Belly Troubles...


When preparing myself for the Fontan I knew we would face issues with fluid. All Fontans drain a lot of fluid from their chest tubes because of the pressure changes which occur in their body. What I did not expect was all of the issues he would have with his stomach.

When the kids have their second open heart surgery (The Glenn), they get "Glenn Headaches". Basically their plumbing is re-routed and the pressures in their body go to their head causing horrible headaches. When the kids have the Fontan, their anatomy is yet again re-plumbed and their bodies once again have to adjust to the new flow and the new pressures. This time the pressures go down to their stomach causing a lot of belly pain. For Jake he has been battling lots of air in his stomach. I am not going to lie this is horrible. Jake looks better then I was expecting him to but it is so hard watching him go through all of this and not being able to do anything to help him.

The past few days have been really hard on Jake. Here is a quick run down of what has been going on. I hope it all makes sense because I am pretty tired but I wanted to give everyone an update.

FRIDAY
Good Stuff: Got a lot of fluid off lungs
Bad Stuff:
Lots of fluid accumulated, Lost IV

Chest Tube
Jake woke up Friday feeling pretty bad. We expected the day after his surgery to be rough but his numbers were all trending down and he had a fever that was creeping up through out the day. He was pretty miserable and having problems keeping his oxygen up. His chest x-ray showed a lot of fluid on his right lung so they decided to put in another chest tube. It was really good that they did because they got 8 oz. of fluid off of his lung immediately. That is a ton of fluid! His fever went away immediately (The fever was the bodies response to the fluid) and his oxygen was a little better. His labs all went back to normal as well. He continued to put out about 20ml of fluid an hour through that tube.

One of Jacob's IVs started to infiltrate so they needed to take it out. I knew once one went the other was sure to follow. Since it was almost the weekend they called IV team who said there was no way they could get him (He is impossible even under the best of circumstances). It took over 10 tries in the OR which is the ideal place to get an IV since they are warm and asleep. I told them in the past we always needed a ultrasound guided IV placement. They called Interventional radiology but they didn't come up. The docs said that it was fine for him to just have the one IV and not to worry about it.


SATURDAY
Good Stuff: No Oxygen, No Catheter, Own Room!
Bad Stuff: Belly in tons of pain, Swollen liver, No IVs
  

The good news is Jacob no longer needed any oxygen support. The doctors were happy as long as he stayed above 80. His last IV blew which I was afraid it would. Now the only access he had was the Fontan line that goes directly into his heart. IV team tried but could not stick him and there was no one from Interventional radiology to do the ultrasound guided placement. This is exactly what I was afraid would happen. It was decided that he would need a PICC line for a more stable access site. We would have to wait until Monday or Tuesday for that. This meant that we would have to keep in the Fontan line which meant Jacob would be stuck in bed all weekend. He can not get out of bed with that line because it is directly into his heart so we can't risk it getting pulled out.

Another plus on Saturday was Jacob got his catheter out. He was able to pee on his own yay! The bad news is his stomach got progressivly worse. It was very hard and full of air. The x-ray showed stool that was stuck there along with a ton of air. We had been giving his glycerine suppositories, mirilax and Collace but nothing was working. He would cry if you went near his stomach. His liver was also enlarged but they said that is due to the fluid build up and his belly pressures.

The Best news of the day was we got our own private room. Before we were in a room with 3 other people includeing 2 infants. Everytime Jake would attempt to sleep the babies would cry and he would wake up. Having a private room is great! I can spend the night in the room with him and it is so quiet.

On a fun note, Taylor Swift visited CHOP yesterday.
I took her picture and got screamed at by security lol.




SUNDAY 
Good Stuff: He POOPED!!!!!! Got the ART line out. Still peeing on his own. Fluid is slowing down.
Bad Stuff: TONS of belly pain, Lots of vomiting, Still stuck in bed.


Sunday Jacob woke up and looked great. He was singing and repeating everything off his movie Chuggington. He asked to eat and ate one grape (We celebrate even the little victories). He just seemed so much better. Then started the major belly issues. He started wretching and vomiting. He wanted to drink so bad but he would take one sip then sit up and vomit. He started turning completely over in bed on his hands and feet and crying in pain. His belly was really hurting him. I felt so horrible for the poor baby. We again tried suppositories, anything to help him but nothing was working. He would sit up in bed and just dry heave over and over. We stopped giving him anything to eat/drink but he kept asking for it. He was no longer allowed to have morphine or oxycodone because it was contributing to his constipation.

Later on today we realized his ART line was bleeding. It looked like all of the turning and climbing in bed caused him to pull a suture. The docs agreed to take it out. I was a bit nervous about this because it is the place they would get all of the blood from for labs. They said they can access his Fontan line to get labs if need be and hopefully he will get the PICC soon and they can access that. The good thing is this line was in his groin and very uncomfortable. By taking this out he no longer had any lines in the diaper area which will be so much better for Jacob.

Finally tonight they did an Enema and he FINALLY pooped! I was hoping this would make him better but he still had a lot of air in his belly. He is still dry heaving and gassy. We are venting him and giving him gas medication. The docs say this is normal typical Fontan belly. His body is trying to adjust to the new pressures in there but unfortunately the gut takes a beating while adjusting. We know that if he could get up and moving then all of this would start to get better. The problem is the only access is that one Fontan line and as I said he can't get out of bed with that. He was supposed to get a PICC line tomorrow so we can get that Fontan line out and get him moving but the schedule is full. Please pray that they can fit him in. Another day of waiting in bed is not what I want for him. I want him to be able to feel better. If he moves the fluid and air will move easier through his body. He wants to get out of bed and I don't blame him.

Good news is his fluid is slowing down and turning clear which is all good. He has gone from about 20ml/hour to 10ml/hour. He had milk and there was no Chylous which can sometimes happen so that is GREAT! The color is changing to clear which is also great. Hopefully this is a good sign that it will be slowing more and more and eventually stop! The fluid is also contributing to Jacob not wanting to eat.

We also had some visitors today. We  had a surprise visit from my Aunt Linda and Uncle John. They live in Mass. but were in North Carolina and stopped by on their way up to New York. We had no idea they were coming and it was such a great surprise! We also had a visit from a fellow heart mom and friend Christa. She came to visit and brought some delicious food. It was great to get to take a break and chat for a while!

Jake with Uncle John and Aunt Linda! We love you guys!
Jake with Christa <3 td="">
Thank you for the continued prayers for Jacob. He is slowly getting better and I know with each day will come progress. Please pray they get Jacob in for the PICC line soon. This stay has been rough on everyone. Aidan is having a really hard time not having both his mommy and daddy with him. I stayed with him last night and Andy stayed with Jake. We don't leave Jake without at least one of us or my mom but it is hard because they both want their mommy. Please pray Jacob continues to improve and we can all be home together within a few weeks.



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Thursday, July 18, 2013

We made it...

We are officially Post-Fontan!!!!

We have dreamed of this day since Jacob was in my belly and we found out he had HLHS. We knew he would need 3 open heart surgeries to survive. Back then it seemed so far away. The day we could be Post-Fontan, the day we would no longer have this surgery looming over us. That day is here. We did it, we are officially Post-Fontan!

Honestly, part of me is nervous because he is doing so well. I keep waiting for something to happen. Thankfully he has been stable and has done better then I could have imagined. 

We started off the day by running late. It never fails, our alarm clocks didn't go off and the iPad I set as a back up ran out of power and turned off. So we woke up 3 minutes before we were supposed to be there. I only woke up then because my mom happened to wake up and see what time it was. Thankfully we were right down the street at the Ronald McDonald House. We got dressed, parked and made it upstairs in the hospital in 20 minutes! He was having his MRI study first then going straight into his Fontan. They gave him versed to calm him down before we went and boy did it work. He was punch drunk and laughed the whole way down the hall as they were wheeling him to the OR. He kept saying "Weeeeeeeee" It was adorable! I was starting to feel the tears coming as I kissed him good-bye then I turned around and saw the doctors open the doors and Jake Pointed down the hall. It was like he was saying "Lets do this". I couldn't help but smile. Off he went, my amazing strong boy.





Everything went very well. Surgery went smoothly, Jake had no issues coming off of the bypass machine or the ventilator. He was extubated by the time we saw him. He only had one chest tube, a inter-cardiac line which goes directly into his heart, and an arterial line. They had to put the art line into his groin area because his his veins and arteries are so used up. They tried the hand but were afraid pushing it anymore could risk him not getting any blood flow to his hand which would be VERY BAD. He only needs the art line for the heperin they are giving him, once they get him to therapeutic levels they can switch him to lovenox. He is on the heparin because of his factor IV Leiden gene. He is at risk for clotting so we need to have him on anti-coagulants for a few months post-op. They have already gone down on his heart med (Milrinone) and he may not even need enalapril (Blood pressure med he was on at home) anymore once he goes off of the milrinone. He is getting some dex to help take the edge off. It is like a Valium but without the blood pressure side effects. He is also getting Fetinal for pain but we are transitioning to morphine. I know I am not spelling any of these meds right but forgive me I am too tired to look it up.

Dr. Spray, Jacob's Surgeon
 We are so blessed to have him as Jacob's Surgeon.
He is not only one of the best pediatric heart surgeons in the country, but he is a great guy too!
His oxygen levels are still a little low but he is still pretty sedated so that is normal. He needed a lot of fluid pushed earlier to keep his blood pressure where it needed to be but they said that is very common after the Fontan. It is a way of getting the volume in him to "Kick start" the new circulatory system. It has balanced out now and they actually are starting diuretics to help get rid of fluid now. It is a balancing act. He has not needed any blood transfusions since coming back. They do get blood in the OR on the bypass machine but he hasn't needed any transfusions.

He is not draining that much blood into the chest tube which is great. This may increase tomorrow as his body adjusts to the new pressure in his body. If he continues to do well they are going to shut off the sedation tomorrow, wake him up and get him moving more. The plan is to remove the inter-cardiac line tomorrow and possibly his art line. The chest tube will stay in for a while but it is really small and can be pinned to his pants so he can walk. They said they will get him up and walking around tomorrow or Saturday depending on if his art line can come out or not.

The plan is to keep him sedated and calm tonight. He is waking up once in a while but I can easily calm him right back to sleep.



Thank you so much for the continued prayers for our precious little warrior. He continues to amaze me with his strength and will to fight. The next few days will be rough but I will try and update when I can.


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Wednesday, July 17, 2013

Back on Schedule...

We got the call we have been waiting for today. CHOP called to let us know that Jacob will be having his Fontan tomorrow morning. We also got into the Ronald McDonald House. Things are finally falling into place.

We need to be at CHOP at 5:30 tomorrow morning. Jacob is first on Dr. Spray's schedule. First he will have a MRI scan of his brain. This is a research study that we are participating in. They will look at the blood flow to his brain now and then compare it with the blood flow in 6 months after he has his Fontan. This will allow them to see if the difference contributes to developmental delays. We also wanted to participate because it will show us if Jacob has ever had a stroke or if there is anything else contributing to his speech delays.

After he is taken back we will go meet with Dr. Spray to discuss the surgery and ask him any questions we may have. Then he will go down and once again operate on our beautiful baby boys heart. This is the third time we have handed Jake over for open heart surgery, 5th surgery he has had (g-tube, airway). It never gets easier to hand him over but we know he is in the best hands possible.

The past few days have been crazy but I am glad we are back on track. The boys had a great night tonight playing and exploring the Ronald McDonald House. Jake was in LOVE with the trains. 
 

This is the first ever Ronald McDonald House. The architecture is beautiful!








Aidan met a new friend, Perry. They built a really cool dragon out of legos.


Please pray for our baby boy as he enters this next stage in his journey. I will try and post as soon as I can to let everyone know how it went.


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Tuesday, July 16, 2013

The waiting game...

I would love to update you by saying we are finally Post-Fontan but plans have taken a different turn. Jacob's surgeon went home sick yesterday with an acute viral illness and his surgery was cancelled. It has been a crazy couple of days but here is an update about what has happened so far.

We arrived in Philadelphia Sunday evening. Yesterday our day began at 8am at the Cardiac Prep and Recover Unit. As soon as we were taken back and Jacob saw the hospital gown he started crying and yelling to go home. We finally got him changed and calmed down but he was not a happy camper. Thankfully we had the iPad so he could watch his favorite movie "The little Engine that could".


Child life came by and gave him some toys. They had a police car he could get in and ride so he cruised the halls for a while. I was excited to see that his oxygen levels were 86/87 the whole time we were there! That is awesome for Jake.

While waiting to go for his cardiac MRI we had our surgical consult and learned step by step what they would be doing in the surgery. We signed all of the paper work giving them consent. We also met with anesthesia to go over risks and sign those forms. Jacob's nurse gave him a cute train pillowcase and a "Shadow Buddy". The Shadow buddy is an adorable little doll with a heart line on his chest and a heart patch. He comes wearing a gown and with a bag full of items for the kids to use to "Treat" him. It is a way to teach kids about the surgery and what may happen to them. We named him J.J for Jacob's Journey. The boys (especially Aidan) loved playing doctor with him and fixing him up.



When it was time for his MRI Jacob was given versed (His happy juice) to help take the edge off. Unfortunately it did not work as well as it has in the past and he was still giving us a look like he didn't trust any of us. I went back with him while they put the mask on and put him to sleep. I hate that part, he fought them the whole way. He was not going down without a fight. The MRI took a few hours, while they had him back there and sedated they went ahead and did his echo and took all of his labs. I was so grateful for that because getting blood from Jacob is very difficult. Once Jacob was awake and drinking juice he was taken down for a chest x-ray. They also did an ekg and then it was time to get discharged!


Sleeping after MRI
Before we got discharged we learned that Jacob's surgeon Dr. Spray went home sick. Any heart mom can tell you that if you find out your surgeon is not there you kind of panic. We were told to go back to the hotel and plan on being back at the hospital at 5:30 am unless they call and tell us otherwise. Later that night we got a call that his surgery was cancelled because Dr. Spray was too sick to come in. They had no idea when we would be rescheduled and said they would call and let us know.

As you can see Jacob was really sad that his surgery was Cancelled lol.

I spent all morning today on the phone with people trying to figure out what is going on or where we could stay. The Ronald McDonald House in Philadelphia and New Jersey were both full and wouldn't even consider letting us in if they had room because Jacob was not admitted yet and there was no plan as to when he would be back on the schedule. I tried talking to the hospital and the RMH social workers but there was nothing they could do. We were already in our second hotel but it would be expensive to continue to stay there. We decided to come to Holiday Inn, in Cherry Hill New Jersey because they had a hospital rate of $63/night which was about half of the price of what we were paying in Philadelphia and there was no parking fee. In Philadelphia you have to pay $20 to $40 in parking fees (CRaZy)!

The GOOD NEWS of the day is that Jacob's heart echo and the preliminary MRI results showed that his heart function looks great. Clinically he could wait longer for his Fontan if he had to. Although that makes us very happy to hear, we don't want to have to wait until later this year for his Fontan because we are already here. My husband has used vacation time, we drove 9 hours and have already invested in this trip. If we were pushed back until the fall Aidan would be in school and Andy's vacation time would be used so he couldn't come either. We tend to think of the surgeons as super heroes but they are human and these things happen. I understand that but I also feel that Jacob should get priority since he was scheduled back in February and we have come all this way.

I called the scheduling department tonight but they said they still couldn't tell us anything. A short while later I got a call from the Chief of Anesthesia, Dr. Nicolson. She was so nice and apologized that we were not contacted earlier today. She said that Dr. Spray has only cancelled surgeries because of illness two times, this being one of them so he is really sick. He spoke to Dr. Nicolson earlier and told her that he would see how he feels tomorrow and IF he feels better then he will come in tomorrow. If he comes in they will meet and discuss if he is well enough to do surgery on Thursday. If so, Jacob will have his Fontan then. Everything depends on how Dr. Spray feels. Obviously we don't want him operating on Jake if he doesn't feel 100%. This is heart surgery on a child so he needs to be at his best. We also can not risk Jacob getting any illness which could hurt his recovery or worse. We spent weeks trying to protect Jacob from any illness so we can't risk him getting sick in the OR. Dr. Spray is an amazing doctor and I know he will not do anything that could risk Jacob getting sick. If we have to wait then we will but hopefully it is not too long!

We discussed the possibility of using a different surgeon. CHOP has three caridac surgeons. One of them is not in town, she is on vacation until late July. The other one is booked this week. So we are pretty much just in a waiting game. We need to take it day by day and see what happens with Dr. Spray. I was very concerned but I feel much better now that I spoke with Dr. Nicolson. She is a very good person to have in your corner when needing to get on the schedule. She is going to call me tomorrow after she talks to Dr. Spray and give me another update. We should have a plan then (I hope).

So 3 days, 3 hotels and a whole lot of stress but thankfully Jacob's heart looks awesome and that is the only thing that matters. He has also been talking like crazy since we have been here. He has been responding to questions and talking in sentences which is awesome for Jake. Thank you so much to everyone who has reached out to us. Your generosity and kindness has been greatly appreciated. Please pray that Dr. Spray is feeling much better soon and we get back on track.  Until then we will be hanging out in Jersey...






















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