Saturday, March 31, 2012

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 :)

Friday, March 30, 2012

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

Thursday, March 29, 2012

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...

Sunday, March 25, 2012

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...

Saturday, March 24, 2012

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 =)

Thursday, March 22, 2012

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!

Wednesday, March 21, 2012


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!

Monday, March 19, 2012

Working hard

Jensen ended up spending almost 12 hours off oxygen yesterday! He ended up having to go back on (up to 2 liters at one point) but I think it was a good start for him. Last night was a weird night, he just wasn't being himself. His sats dropped for a while and finally leveled off once he was turned up to 2 liters, he was gagging and spitting up quite a bit, sounded very congested, and was pretty fussy. Our nurse was great and called his resident and fellow multiple times without me asking. They did a chest x-ray to check for aspiration, fluid around his lungs, and to make sure his NG tube was still placed correctly. Everything looked pretty normal, they couldn't really determine what was going on.

His team ended up giving his feeds over 2 hours instead of one (for the reflux), suctioning his nose (for the congestion), and giving an extra dose of Lasix (for possible fluid). At about 1:30 this morning his sats leveled off, his gagging stopped and he slept straight through the night! Dr. Fuller checked on him this morning and he still looked great, hopefully last night was just a minor setback.

Today his oxygen was weaned back down to 0.25 liters. He was put on fortified breast milk because he is still losing weight despite several days of being fed hindmilk alone. He also took a bottle for the first time since surgery and did pretty well! It will definitely be a slow process to get him to bottle-feed but he is getting there! He has also been doing lots of physical therapy and stretching AND we have him practice tracking and fixation with a sensory stimulation app =) This boy is working hard to get discharged!

My parents left today after being with Jensen for a month! They and Jeremy's parents were such a big help while they were here, especially when he was critical. They reminded us to eat, brought us food, faxed our insurance documents...basically all the little things I could not possibly have dealt with while Jensen was so sick. Mom and Dad also transported my ridiculous oversupply of breast milk to our house today! Jensen is very lucky to have two sets of fantastic grandparents!
Holy Cow! That's a lot of milk!
Taking his first bottle post-surgery!

Sunday, March 18, 2012

Notice anything?

That's right! No more oxygen! His sats have been in the high 70s- low 80s. Yesss!

Saturday, March 17, 2012

Another day in the life =)

I have apparently scared off our nurse we were supposed to have for four nights in a row. She mysteriously got reassigned after last night's "loud advocating" for our son (some might call it me being an annoying mother). Whatever. She was terrible and did almost everything wrong. But today is a new day and we were given a dayshift nurse straight out of Heaven! She was wonderful!

Jensen is still struggling with morphine withdrawal. He is now on Tylenol and that seems to help, but he is still very irritable and sometimes inconsolable. He was so clingy last night I barely got to lay down at all, let alone sleep. I actually fell asleep standing up! Jensen's oxygen is still up and down, going between 0.5 and 1 liter. Like the morphine, I think it will take longer for him to wean off the last little bit.

He had his swallow study yesterday and did very well. He was very awake and they got to try every position, bottle, and liquid thickness they had. He ended up needing the thickest liquid (its the consistency of a milkshake) to prevent aspiration. The speech pathologist will start working with him on Monday. They will be adding a thickener to the breast milk and using a special high flow nipple. He definitely has the ambition to eat, just has trouble with swallowing. I hope he does well with this combination.

I've had some people ask about our schedule, so this is what we are doing now: Jeremy and I basically stay with him for 12 hour shifts. Jeremy is staying overnight tonight and I will relieve him in the morning at shift change so he can go to the hotel and sleep for a few hours. He will come back just after lunch and we will spend a few hours together until dayshift ends and then I will do the overnight shift. Rinse. Repeat. Its definitely exhausting, but better to have only one sleep deprived parent than two =)

And now for your daily dose of Jensen cuteness: 
Chuck up the deuces 
Whoop! Whoop! Happy St. Patty's Day!

Thursday, March 15, 2012

Let the "real" parenting begin

The CCU is proving to be a true test run for life at home. Instead of kissing the forehead of a sedated baby and then going to the hotel to sleep through the night, we get to be real parents now! Its wonderful and awful at the same time! I love that he is more awake and alert because he is coming off of his morphine. However, he is also very fussy and sometimes inconsolable because he is coming off the morphine. He had a busy day today and yesterday with many people stopping by to check on him. Jensen just doesn't want to be messed with right now but his room is like a revolving door of lactation consultants, speech therapists, nutritionists, nurses, discharge planners, social workers, fellows, residents, attendings, physical therapists.... that poor boy.

Jeremy and I are also having a hard time differentiating what is "normal" baby stuff and what is heart baby stuff. We hear him make noises, but does that mean he is simply waking up, or is he gasping because his respiratory rate just dipped? He also spit up for the first time today. Does that mean he isn't tolerating his feeds because his stomach pH is too low, is he suffering withdraw symptoms, or is he spitting up because he is a 3 week old baby and that's what babies do? (Seriously, can I get a call button for a nurse installed at my house?!) Our attending for tonight wasn't too concerned, but is going to see if a pattern develops with the spitting up before they make any changes.

An ENT came by today to look at Jensen's vocal cords. One side of his vocal cords is not moving, which is not surprising given the intubation time. He basically said its something we will just have to watch. It will probably resolve itself, but we have no idea about a timeline and how well he will recover from the damage. His cry is still getting louder everyday, but just from the side that is moving. He will have the swallow study tomorrow, everyone say a prayer he does well. Feeding is now his biggest challenge. (Oh, guess who is down to 0.5L 02!? That's right, we're not so worried about his oxygen situation anymore!)

Here's Jensen doing physical therapy today! Although it looks like I am choking him, he was sitting up working on head control! He did so well!
And Jeremy was excited to find a candy store across the street from the hospital! He stocked up so he would have enough of a sugar rush to make it through the night with a fussy baby!
Hehe! I love his adorable face! He's still working on moving his eyes...sometimes they just go in whatever direction they please ;)

Wednesday, March 14, 2012

New life in the CCU

Jensen is adjusting to life in the CCU. His mommy and daddy are working on it ;)  Its definitely a different atmosphere. The goal of the CCU is to get you ready to go home with your little one...there are varying opinions on how to do this. Some of our nurses will let us 'work at our own pace' and take over care when we are ready. Other nurses expect us to do much more. We are loving having more freedom and time with him, but it can be overwhelming.

Jensen's achievements for the day: morphine weaned again, Lasix spaced out to only twice a day, held O2 sats at 1L for the entire day, and had a consult with speech. He was able to take about 5 ml from a bottle today. He still has trouble swallowing but has improved since yesterday. Tomorrow an ENT will see him and he will have a swallow study on Friday. This is where they use barium and video his swallowing to track where everything goes. They will also assess any vocal cord damage; he is getting louder but his cry is still very hoarse. Our attending cardio mentioned getting a G tube for Jensen instead of the NG. The G tube is surgically placed and goes directly into his stomach. It is a more permanent option than the NG and is used for babies that are at risk for aspiration during oral feeds. Jeremy and I are not thrilled about this idea and think this cardio is jumping the gun a little. We really feel like if Jensen is given a chance, he will improve his feeding enough to avoid a G tube (and hopefully an NG). I'm turning into one of those "mama bear" heart moms that I was warned about ;) I know what my little guy is capable of and I'm going to make sure he has every opportunity to shine (and eat!).

In other news, Jensen's very first friend Christian was discharged today! While we will miss having his family around, we were happy to see them go =) Yay Christian!

Tuesday, March 13, 2012

Hello CCU =)

We finally made it to step down today! Its amazing how moving 75 ft down the hall makes such a huge difference! I felt like today was such an accomplishment for our little man =)

Jensen's new room is a private room with a sleeper sofa, so one parent can spend the night with him. Jensen and Jeremy are having a boys' night tonight! We took an infant CPR class today, which was one more thing crossed off the list to go home. We have also been giving Jensen his meds and feeds through his NG tube. Speech came by today to work with him on a bottle feed and he had some trouble swallowing. This is to be expected, of course because he was intubated for so long. Tomorrow, they are going to try again and hopefully he will have made some improvements. His oxygen is still up and down, he is on 100% at 1.5 L with sats in the low 80s. Dr. Nicholson has been checking on him multiple times a day to make sure his oxygen levels are under control. We are fully expecting to go home on oxygen after everything Jensen has been through.

Today was a very busy but wonderful day! Dr. Fuller is out of town right now but still texted me to let me know that she misses Jensen and is so happy he's in the CCU =) We are so lucky to have her as his surgeon. She definitely goes above and beyond any expectations we had about her.

Leaving the CICU!
His big boy bed =)

Monday, March 12, 2012

Getting better every day

Jensen is doing great! We should be heading to the CCU tomorrow :) He is now getting bolus feeds, 75 mls every 3 hours and he's tolerating it well! Once those feeds are condensed a little more, speech will give the green light for oral feeds. Please pray for Jensen as he heads toward oral feeding. Feeding is a big hurdle for Heart babies and will determine when we are discharged to go home.

He is being a little picky about his oxygen. He has been changed from 3 to 1 1/2 liters and then back up. He does desat for a while then is fine. This shouldn't keep him from the CCU but he definitely needs to find his happy oxygen settings.

He also had some of his stitches removed today and the rest will come out on Wesnesday. His scar is healing very nicely!

He is definitely a daddy's boy :)

Sunday, March 11, 2012

Getting closer to home

We haven't moved to the CCU yet, but we are getting there! Today we took our first parent education class. We learned how to put in an NG tube in case he goes home with one. We still need to take CPR and a medication class next week. Jensen is on oral morphine AND lasix now! The only IV he has left are his steroids which are being weaned. His morphine dosage is very low...yay! His feeds are still continuous but he is up to 20 ml/hr. He is scheduled for a follow-up MRI in 2 weeks.

Jensen spends a lot of time cooing and being cute in general =) He was awake and content for a full hour today! Yesterday he spent a long time with me doing skin to skin! We have also been continuing to work on his sucking and he loves a milk-dipped binky! We are so in love with our little man <3

Pics =)

 Dr. Fuller and I
 The new Willis family
 First bath from Mommy!
 Scrubbing his chest =(
 He looks so small now!
 Hates chest PT!
 Haha! He was wearing himself out from all the crying!
My loves <3

Saturday, March 10, 2012

Stepping down?!

That's right! There's been talk of stepping Jensen down to the CCU! We have no idea when but we were told today he is "not an intensive care patient anymore"! Yay!

Jensen has been put on a regular cannula instead of the high flow and he's on 2 L at 30-40% O2 with sats in the 70s-80s. They're still working on weaning him but he has had some desats so it will just take time. His morphine is still being weaned and his feeds are up to 16 ml/hr! His belly is so much less swollen, he looks great! He now weighs 4.2 kg...he was 4.9 only a few days ago. He absolutely does NOT like chest PT! He turned bright red from all the screaming! His voice is still very hoarse from the breathing tube. Speech said yesterday that it will take about a week for it to sound more normal. He has been doing great sucking his binky and swallowing drops of milk. That's a good sign for feeding by mouth soon :)

We are so so grateful for everyone's prayers for Jensen! I know they are working because he is doing amazing! We are so blessed :)

From this morning: Jeremy thinks he is pondering world domination! I am just happy to see the art line out of that arm!

Friday, March 9, 2012

Big steps today!

Jensen amazes me! He has come so far and keeps getting better. He is still on the high flow nasal cannula but it's down to 20-30%. The EEG was this morning and Dr.Licht is going to read it and then check on him. The chest xray from this morning was a little fuzzy, probably just from being intubated for so long. Respiratory will be doing some chest PT later. A speech pathologist will start working with him on Monday, they will be checking his vocal cords for any damage. He was taken off Milrinone (heart med) which was his last continuous drip! He is now receiving oral morphine with his food and it is being weaned slowly. His feeds are being increased so he's now getting 6 mls/hr! It's like a buffet! His swelling looks sooo much better today and his fellow called him "svelte" :)

Pics from today! He is definitely a blue

Thursday, March 8, 2012

Bye bye vent!

Yay! Our boy is doing fantastic :) he was extubated this morning! He is now on a high flow nasal cannula that's at 50% oxygen. He is being weaned off his morphine and has started feeds (again). He's has so many procedures lately he hasn't been able to feed for more than a few hours at a time before they make him NPO. So he's starting at 1 ml/hr of breast milk and increase by 1 ml every 4 hrs. He is still peeing like a champ! His swelling is going down slowly but surely. He had an echo this morning and everything looks normal. He had a small amount of leakage around the neoaorta but that is nothing to be concerned about. His left pulmonary artery looks good and has great blood flow through the stent. He will have his EEG tomorrow morning.

We are so happy to lose tubes everyday! We finally got to hold him ! We are one step closer to going home :)

Wednesday, March 7, 2012

2 weeks old!

Yesterday was a rough day for everyone in our pod, but today is a new day and we have a new outlook on things. Our boy is doing great today and that's what matters! He is completely off his dopamine, diuretics are only every 6 hours now, and his morphine will be weaned down today. He is having a PICC line placed in his leg (an IV that is more for long term). He will also have his umbilical line, chest tube, and RA line removed today. He was seen by an occupational therapist who checked his tone and reflexes. She said everything looked like he is right where he is supposed to be. He will have a follow up EEG on Friday to make sure he is not having any more seizures.

Since he is getting the PICC line placed his extubation has been moved to tomorrow. He is definitely ready to lose the vent, he is on minimal settings and has been for a few days now! We are definitely enjoying Jensen being more awake :) we have also been on quite a bit of diaper duty since his catheter was removed! He showered mommy for the first time today...I'm sure there's a lot more of that to come :)

Tuesday, March 6, 2012

Hard day

Jensen looks better and better every day. We are so proud of him! He went to get his MRI today at 10:30 and waited around most of the day for results. While we were waiting our attending told us that the clot in Jensen's left leg had completely occluded the artery. However, his body had already formed collateral blood vessels around it and is supplying blood to his foot sufficiently. Unless the clot dissolves, we will probably never be able to use that leg did future procedures (Caths mostly). This isn't great news but at least he has a pulse and decent BP in that leg.

Finally we spoke with Dr.Licht and the news wasn't great. Jensen was already at risk for learning impairment and developmental delays simply by having a CHD. After the extended surgery times, amount of time on bypass, ECMO, low oxygen, and seizures there is a pretty concerning injury to his brain. His brain volume looks significantly decreased compared to the pre-surgery MRI. This could be an injury or it could be dehydration from the diuretics, we aren't sure. There is also injury to his cerebellum. This controls tone, balance, posture, coordination, etc. Also, we knew he had a subdural bleed, but it was larger than what was previously described to us. To prevent it from growing larger, they stopped his heparin. The heparin was being used to thin his blood bc of the clot in his leg. Hopefully the clot does not grow now that he is not on blood thinners for the subdural bleed. It's all a balancing act.

Lastly, Jensen has an injury to his hippocampus. This area involves learning and memory. The damage was most severe in this area. None of this information is qualitative. We have no idea how this will affect him or what his quality of life will be. The hope is that if we are aggressive with therapy, early intervention will make a difference in his outcome. They are working with our social worker to set up physical, occupational, and speech therapists as well as a pediatric neurologists back home.

This has been an incredibly frustrating day. We see him improve every day and this feels like we are taking steps backwards. I just wish our little man didn't have to fight so hard.

Monday, March 5, 2012

What a show off!

Jensen has proven to be quite the little show off! Just after Dr. Fuller finished closing his chest, he opened his eyes and looked around (with plenty of meds on board!). His numbers were beautiful all day long. When we went home tonight the ventilator was down to 25 and his oxygen sats were 86-87! He is still negative (peeing fluid off) and moving around a lot. He is now able to start chest PT, which will help the small sore on his back. Jensen LOVES laying on his side, he looks so comfy! He has done incredibly well today!

Tomorrow Jensen will have an MRI, so he will be under anesthesia...again. I hate that he has to be under so much, but I know its the only way. He is definitely doing well trying to breathe on his own, so hopefully once he wakes up from sedation, he can be extubated. We love this little boy so much! It only gets better from here =)

Chest is closed!

Yes! Dr.Fuller just told us his chest is closed and he is doing well! His pressures did not change once he was closed, so he is tolerating it very well. All that peeing the last few days has made a big difference! The pacing wire in his heart was removed but he still has the chest tube and RA lines. Dr.Licht wants to do a clinical MRI tomorrow to check for any injury the seizures might have caused. They are going to leave his breathing tube in through the MRI and then extubate on wednesday.

Just before the procedure this morning Jeremy and I were loving on him and Jensen opened his eyes wide and gave us a big smile! Now I know you probably think it was just gas, but we like to call it a smile. Whatever it was, it was the sweetest face I've ever seen :)

Sunday, March 4, 2012

Ups and Downs

This heart journey is definitely a roller coaster.  Thinking back to where Jensen was a week ago, he has improved by leaps and bounds. His surgery day seems like years ago! He had yet another great day, thank goodness!

I met another wonderful heart mom, Julie who some of you back home might know. They are from the Tri-Cities! Weston is a sweet little boy at CHOP, whose room is right beside Jensen's bed. He is definitely the sunshine of the CICU =)

Although there are so many positives right now, we are heartbroken for another heart family. They lost their heart warrior Jayden today. Please keep the family in your prayers, I can't imagine the pain they are going through.

Chest closure tomorrow

Jensen had a fabulous night again! He is doing so well getting rid of fluid, he looks great! He is getting ready to start getting breast milk through the NG tube again. His color looks much better today too.

Chest closure should be starting at about 830 in the morning. Dr.Fuller will be doing external stitches (vs ones that dissolve internally) because he has been open for so long they don't want to risk infection. His chest tube should come out on Tuesday and extubation on Tuesday or Wednesday . They are still discussing taking out his RA line (measures pressure in his right atrium). If they do decide to take it out we will get to hold him very soon!! I can't wait! I haven't held my boy since Feb 24. I'm so so so proud of how well Jensen is doing! I'm one lucky mama!

Saturday, March 3, 2012

Big strong boy :)

That's what I've been calling Jensen all day! He is still doing great but man... This boy is strong! He fights sedation so hard and he has a super tight grip that could crush fingers. There were several rounds of "silent cries" today, absolutely heartbreaking to look at. He is also going through some withdrawal because he is being weaned off of his morphine. Its rough to see, but I know Jensen is a little fighter and will have an even better day tomorrow. He always calms down when Jeremy and I talk to him and love on him. We feel like we can actually do normal parent things with him now.

Jensen had some visitors today! Talisha drove up from TN for the weekend and got to see our cute boy! Also, Sandy and John stopped by for a bit! We love showing off how well he is doing :)


Jensen had a great night and so did we (finally got some sleep!). He looks great and all his numbers are good. The drain in his neck from the cannula was taken out and is healing nicely.he is very active this morning! They want him to be pretty mobile today to help get some fluid off. We are happy to see him moving but that means he also cries :( He gets aggravated when he is messed with too much and starts to cry. His BP goes up then once he calms down his BP goes back down. It's hard to watch but it is progress And means his BP is on the right track.

We are thrilled he is doing so well! Dr.Fuller is still planning on closing his chest on Monday and then extubating him on Tuesday.

Friday, March 2, 2012

One happy mama!

Jensen is doing awesome after coming off of ECMO. His sats are mid 80s, HR 140s, BP 70s/40s. His vent settings have been turned down and his partially collapsed lung has reopened. He is showing no signs of seizures, he is still peeing great, and maybe starting breastmilk feeds again tonight. We are ecstatic!

For those of you who were wondering, Christian is Jensen's pod-mate. They're best friends and will be chasing after girls in the next pod very soon! They were born  the same day and he has TGA. His surgery did not go as planned and ended up needing a second surgery. Things were rocky for a while, but now, he is doing awesome and was extubated! I love hearing that baby cry =) We are so happy for his sweet parents!

We celebrated coming off the circuit by going out to eat some BBQ with the parents, yum! We are also celebrating by getting more than 4 hours of sleep...yesssss!!

Thank you for all the prayers, donations, and messages. We are so grateful and our little boy is doing wonderfully because of all the love and support. to bed! Goodnight!

Bye bye ECMO!

Jensen is officially off the circuit! Yay! Everything went very smoothly this morning...finally! Dr.Fuller was able to repair the carotid and the jugular too :)

So the plan is to keep him stable, watch his blood pressure (it's normal to be a little low after coming of the circuit), and to continue getting to swelling down. Monday they plan to close his chest! I really think that decannulating is a big step in the right direction and after this, he will improve by leaps and bounds!

About to start the trial

Last night Jensen did have more seizures after his meds were increased. Dr.licht wanted him put back on the continuous EEG. After that he did not seem to have anymore seizures but we haven't heard about the official report yet. His head ultrasound was normal. Yesterday he ended up being -600 so they turned off his diuretics bc His Creatinine was starting to creep up.

Now we are waiting on the ECMO trial to start. We just talked to Dr.Fuller and hopefully it will last about an hour.

Thursday, March 1, 2012

We have one stubborn kid

Jensen has had a fantastic day: poopy diaper, lots of pee, moving around, good numbers...

Then he starts having seizures again. The NP looked at him and consulted with neuro. They think he is just low on his phenobarbital level. His dose was increased and they are watching him. If he has any more signs of seizures they will do more EEGs.

Dr. Nicholson and Dr. Fuller gave him a talk and told him to behave. Tomorrow is a big day and we don't need anymore shenanigans! Hopefully he will be coming off ECMO, they are starting at around 8.

Anxiously waiting for tomorrow

Jensen looks great again today! He is -400... We're so proud! (he's peed more out than they put in) His creatinine level was slightly elevated so they back off on his diuretic and he's tolerating that well. Tonight his doctor wants to do a small trial run for taking him off ECMO. His BP is up slightly but they believe that means he will be able to handle being weaned. He is now up to 3cc/hr of breastmilk! I think we are more excited about this than he is. He did have a small injury on his back that his team is looking into. Because of ECMO and his open chest, mobility is limited which makes him a prime candidate for bed sores. Right now the area is small so hopefully it will not get any worse since he will coming off the circuit tomorrow.

We did experience the "silent cries" for the first time today. You can tell he's uncomfortable and his face looks like he's crying but bc of the breathing tube, no sound comes out. It's devastating to watch. Thankfully they could give him a sedative through the circuit (which acts like a central line) and he was calm within a minute.

We will find out at night rounds what time he is scheduled for the trial.

Another great day :)

Our little snuggle bunny looks great today! His swelling has gone way down! His nurse last night washed his hair and brushed it. It's still slathered in ultrasound goop but he looks more like himself. He is also tolerating his breast milk feeds really well and made some poopy...yay! He is still peeing like a champ and they are turning his diuretics down later today.

Overnight he was waving his arms around trying to get some extra attention from his nurse :) He is actually a little too active so they started him a a low dose drip to calm him down. We are so proud of his progress, hopefully tomorrow he will continue to do well and will come off ECMO.