Sunday, April 29, 2012

How far we've come

We just had a follow-up interview for one of the research studies we are participating in. This one in particular is investigating improvements that can be made in counseling parents that receive diagnoses like HLHS. They are interested in how we make decisions based off of what our doctors tell us and how our experiences change our method of decision.making. So I looked back at pictures from right after Jensen's surgeries and re-read my blog posts around that time. It seems like a year ago, although it really hasn't been long at all. It is simply amazing to me how far our little warrior has come. When an adult had open heart surgery, recovery is long and painful. Our little guy has rebounded from essentially four open heart surgeries like they were nothing! People always say kids are resilient, well, I think heart kiddos are extra resilient (but I may be biased ;) ). 

Here's a look at what has changed in the 9 weeks since his surgeries. 

10 days after surgery, his chest was finally closed
Those first few days Jensen were just complication after complication. It seemed like for every piece of good news, we received three more curveballs that totally changed the game plan. We never prepared for all the things that went wrong. The thought of ECMO never entered our minds until Dr. Fuller came out, looking exhausted and said that it was the only way to keep him stable. That time in his hospital stay seemed like an eternity. We were pretty much zombies and going home seemed so far away.

Jensen weighed 9 lb 5 oz at birth and gained almost a pound of fluid while he was on ECMO. When we were discharged he was back to his birth weight. Today, he weighs 12 lbs 6 oz! He is now in the 65% for his weight =) Because of the delayed sternal closure and ECMO cannula in his neck, he wasn't able to move for weeks. Although he is a little behind, he is working hard every day on holding his head up and using full range of motion in his neck. Here he is today. Chunky, healthy, and full of life. 

Any time I get overly anxious about his cardiac function or his sats dipping a little more than I'm comfortable with, I just think about how far he has come. Jensen is the most amazing little person I know. He is such a strong, independent boy! He has overcome so many obstacles in his short little life and is now thriving! We love this kid more than anything and are so lucky to be his parents. 

We have a ton of people to thank and couldn't possibly name them all. There were those that prayed for us, sent us encouraging messages, dropped by the hospital for a visit, and donated time and money to get us what we needed. We are beyond grateful for each and every one of you. We definitely could not have come this far without everyone's help. 

Monday, April 23, 2012

Day one: Stay at home mom

 Jeremy is back at work and today starts my new career...stay at home mommy. Although I feel like my brain is going to mush from not having been academically challenged in a while, I'm staying busy with little man. (I seriously miss being in college though!) The day started out great, Jensen woke up and was being especially cute. Then he had a poopy diaper so bad I had to give him a bath (sounds familiar right?). Since he was fussing about the bath already, I decided to replace his tegaderm. This is the tape that keeps his NG tube on his face. That was another ordeal and I ended up having to cut it off. That means sharp scissors.... near my child's eyeballs. I'm pretty sure that method of tape removal is frowned upon, but I was working with a screaming baby so I had to get it done quickly! 

We realized that Jensen's weight loss over the weekend was caused by using frozen milk from a few days after he was born. The fat content is much lower since its full of all those fantastic proteins. So instead of wasting that milk because he's not really gaining weight on it, we are mixing it in with his regular milk. It seems to be working much better and he's gaining again. Here's a sample of our milk-mixing routine that we do every day:

We measure out 9 ounces of breast milk and add 6 tsp of formula, which fortifies the milk to 27 cal/oz. We then measure 4 ounces of that fortified breast milk into a separate bottle and add a 30 g gel packet of simply thick (consistency of honey). We then measure out 25 mls of thickened, fortified breast milk and this is what he takes by mouth. Next, we make a separate 9 ounce bottle of fortified breast milk using the milk that contains colostrum. We add 20 mls of fortified colostrum breast milk to 60 mls of fortified regular breast milk and this is what he gets through the NG tube. 

Now I'm sure you didn't want to know every detail of our feeding routine, but I want people to know about it. Heart kiddos have such a hard time eating. The combination of the heart defect, not allowing feeding before surgeries, multiple runs on bypass, and multiple intubations makes for a tough road. They can have oral aversions, vocal cord paralysis, severe reflux, loss of suck-swallow reflexes and a million other feeding related issues.  Many of these kids need different types of feeding tubes and although it is the easiest way for them to gain weight, it makes life more difficult for the parents. I must admit, I get a little jealous when I see a mom out nursing her baby or simply pulling out a bottle and feeding them in 20 minutes with problem. But, I know once Jensen is given the green light to bottle feed, things will be much easier. He has such a big appetite I know he will do great! I'm looking forward to the day the Jensen pulls his tube out and we don't have to put it back in =)
Daph and Jensen...they love each other!
His scars are looking great!

He turned 2 months old on the day I turned 23!

This bouncy chair is the best investment we have made ;)

My sweet baby <3

Friday, April 20, 2012

Interstage stress

Interstage is the period between the Norwood (Stage I) and Glenn (Stage II). It is the most critical period of a hypoplast's life. Their physiology is fragile and their lungs are still developing. The right ventricle has a tremendous workload during this time. The tiniest cold can send an HLHS baby into congestive heart failure. Its stressful to say the least. 

Every day we weigh Jensen. We time how long it takes him to eat. We spot check his sats. His temperature is checked frequently. Each week I check in with a nurse practitioner from the Infant Single Ventricle Monitoring Program at CHOP. We also alternate visits with our cardiologist and pediatrician so that Jensen sees a doctor every week. Here are the list of red flags we were given by the ISVMP:

fussiness or irritability
change in behavior
change in color
diarrhea, vomiting
not eating well
weight loss
sweating more than usual
change in breathing pattern
increased sleepiness
cold symptoms

Now, for any of you who have been around a baby know that all babies exhibit practically all of these "red flags". So how do you differentiate what is "normal" baby stuff and what is heart baby stuff. I'm quickly learning that the answer to that don't. Its incredibly frustrating and stressful to question every cry, every poopy diaper, every gag reflex. 

Jensen has had a lot of reflux issues lately. This is common in heart babies and the NG tube only makes it worse (the tube does not allow the muscle between his esophagus and stomach to close, allowing acid to backflow). He sometimes wakes up out of a deep sleep gagging, which then causes fussiness. He seems irritable around his feeding time. Is this because of reflux or decreased heart function? I called the NP at CHOP and our cardio here in NC. We were seen by his pediatrician pretty quickly and determined we should just increase his reflux meds. 

He also has had some weight loss (36 g to be exact). This kid generally gains anywhere from 20-100 g daily. So, I called the NP at CHOP and let her know. We were told to wait until we have two consecutive days of weight loss since he doesn't have any other symptoms. If he does lose again, we will be making an emergency appointment with our cardio on Monday. 

Now we get to play the waiting game. We will be anxiously waiting until tomorrow night at 8:30 when we are scheduled to weigh him again. Some days it really feels like we just like any other family with a healthy 2 month old. He smiles and does cute baby things. He has chubby cheeks and looks healthy. However, this week definitely does NOT feel like that. 

Please pray that Jensen gains weight. Also, pray that Jeremy and I don't lose our minds during interstage ;) I know this is only temporary and we can handle it, it is just sometimes overwhelming. 

Wednesday, April 18, 2012

Longest week ever!

Seriously, this week is sooo long! We have been so stinking busy and we are exhausted! We've got a lot on our plates right now. Insurance has denied covering Jensen's formula, CHOP keeps trying to bill us, we enrolled Jensen in Tricare, Tricare tried to deny us from seeing our current pediatrician, we are trying to enroll him in the Exceptional Family Member Program, we have to get all new referrals (for the doctors we already see), we have to find an office to get Jensen's endocrinology blood work done, and we have had two appointments in Chapel Hill this week. Sigh.

We really like our neurologist here in NC, Dr. Tennison. He did an exam on Jensen today and confirmed that he is lacking some muscle tone (which the physical therapist also mentioned).  Dr. Tennison also was concerned about Jensen's head circumference, he is only in the 5th percentile on the growth chart. His weight and height are ok, but he wants to re-measure him in a few weeks. We will also be getting another MRI around the time of his second surgery. Basically, we didn't learn anything new, the neurologist just wanted to see him to establish a baseline to see how Jensen develops over the next year. It was pretty nerve wracking to see him flop Jensen around to check his reflexes and muscle tone. He even picked him up under his arms and I thought I might die! (Babies who have had open heart surgery are not supposed to be picked up under their arms for several weeks after surgery, Jensen is past that time frame, but it makes me nervous)

Overall, Jensen is doing well. His reflux is starting to pick-up again, so we will be increasing his meds soon. He is around 11 1/2 pounds now =) He is on the brink of laughing...and we do all kinds of crazy songs and silly voices to try and coax that laugh out! Jensen finally got to meet our pups for the first time! Frankie and Daphne have adjusted well to being back home and are great with Jensen! Daphne stays right beside him when we go on walks and is always concerned when he cries. Frankie doesn't really care so much, he pretty much just leaves Jensen alone.


Sniffing butts

Meeting the baby for the first time!

Our cute little family

Talking to his daddy

He LOVES Jeremy

All the kids napping

Tuesday, April 10, 2012

Tales from Jensen's first Easter

Jensen will be 7 weeks old tomorrow! Goodness, its going by so fast! I hope everyone had a fantastic Easter weekend. Ours was quiet (well, as quiet as a house can be with a screaming baby). We dressed up, took pictures, gave Jensen his Easter basket which he wasn't so interested in, and we grilled out a delicious dinner. It was pretty much perfect...except for the Easter surprise Jensen gave mommy...
Awww so sweet

...not so sweet.

So after our Sunday stroll around the neighborhood I picked Jensen up out of his stroller and heard a splat on the floor. That was the sound of poop hitting the floor. A lot of poop. Now some of you might be offended by looking at a picture of the poop, but I LIVED it, so get over it! It was everywhere: the stroller, the floor (throughout the house), my dress, a scoop of it in my hands, between his toes, etc, etc....
Needless to say, the kid got an impromptu bath. Other than that, it was a great day! 

Jensen just had his evaluation to determine what services he qualifies for through NC's Early Intervention program. A physical therapist came to the house to do testing on him. He did great and was mostly cooperative! He does have issues favoring one side of his neck, due to the ECMO cannula being there for so long. This causes him to be unable to track moving objects properly. However, for all that he has been through, he is doing well. He is beginning to hold his head up on his own, grasps things well, smiles all the time, and moves his arms and legs appropriately for his age. He definitely qualified for physical therapy and speech therapy, we should hear back in the next week if he needs any other services. 

Tomorrow we are off to Cary to see Dr. Robinson for a cardio appt! This will be the first time he has met Jensen and I can't wait to show him off =) 

I'll leave you with some cuteness for the road...

This counts as tummy time so we've been baby wearing a lot!!

I'm sexy and I know it...I work out (hence the track suit!)

Thursday, April 5, 2012

What Jensen has been up to

Tummy time! Sometimes he loves it...this was not one of those times.  
Playtime with mommy and daddy! He has tons of toys we shake in his face all day ;)

His first ride in the jogging stroller

Cruising around the neighborhood

He instantly fell asleep in the stroller!

He wasn't really up for sightseeing 

And his daily activity...being ridiculous cute =)

Wednesday, April 4, 2012

Busy bees!

My goodness we have been so busy! Jensen is growing like a weed, he now weighs 9.9 lbs. He is finally starting to look chunky! He has been doing fantastic on his bottle feeds, he takes almost an ounce in less than 5 minutes (he is allowed up to 20 minutes). Jensen has also been showing signs of hunger before every feeding time, this is great progress. We spoke with a dietician from CHOP and she recommended increasing the volume he gets at every bolus feed. He is definitely on the right track =)

Jensen has been weaned down on his hydrocortisone. He only has to take it for about another week and he will be completely off steroids! This means we only give him meds 2x daily instead of 5x daily. That makes our schedule much easier. We are still waiting on a referral to an endocrinologist so he can check Jensen's blood work after the steroid wean is complete.

Other than that, Jeremy and I have been getting a lot of things done. We have already started getting follow-up phone calls for several of the research studies we participated in. We have a full developmental evaluation scheduled. Jensen has a neuro and cardio appt coming up. We are starting to get the hang of this parenting thing...I think! Jensen finally slept in his crib all night last night! yay! He has been doing lots of tummy time, neck stretches, and loves taking walks in his stroller. We have been sensory stimulating the heck out of this baby with our black and white flashcards! He is probably sick of his mommy and daddy in his face every time he is awake... oh well, he better get used to it =)