Meeting Basco!

On the road!

We're going where??

MONDAY!!!

Crib put together...check
Carseat installed...check
Prescriptions ordered...check
Pediatrician appt scheduled...check
Home supplies ordered...check

Lalito we are taking you home on Monday!!!!!

Love,
Mom, Dad, Caleb and Basco

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4 months

Lalito turned 4 months old last week! Hard to believe it was that long ago. Stretching out the feeds has NOT worked. It seemed to help a little the 1st day but now we seem to be even worse than before. We are hoping that the vomiting is withdrawal related that way we at least know it will resolve itself over time. Yesterday he received his last dose of methadone (which he threw up not long after) and Wednesday will be the last day for Valium. That leaves us with just 6 other meds to administer at home on a daily basis. No wonder he feels sick! That's a lot of meds for a tiny belly. His weight gain is still going okay - 14 lbs and 14 oz.

No whole family visits this weekend. Poor Caleb caught the cold I had last week. Still a very happy guy and talking up a storm!! Much of the time he is telling the dog what to do or sneaking her extra pieces of kibble or telling us to sit down and play blocks. He also talks about baby "Ya-lo" and we can't wait to see what he thinks of having him home. Not long now!

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Cool tunnel from our nice neighbor ;-)

Snuggling with Mr. Caterpillar

Nesting

Ugh...the puking is back with a vengeance. You can tell how uncomfortable Lalito is. We were hoping it would settle down again after he had time to adjust to the last compression but no luck. So yesterday we decided to go back to where we were before he started throwing up again - 2 hrs on, 1 hr off. Hopefully, that will get us back on track and we can try again after he gets a little bigger.
We had a family meeting last week and the discussion was mostly on how long we would be here. The plan is to finish off his narcotic wean here, which takes us through 1/21. They want to keep him for several days after that to make sure he is okay with the wean, but estimate that he could go home around the 25th! This doesn't take into account a possible g-tube surgery, but we could always go home with the ng tube (the feeding tube that goes into his nose) and then have that surgery as an outpatient. So no definite plans but we are using the 25th as our goal date and starting to get ready to welcome Lalo home. This includes furniture assembly, cleaning and trying to warn L about the 90 lb puppy at home who can't wait to meet him (he will probably wonder why his new nurse is so furry and has bad breath ;-)

So cute!

Caleb putting together the baby's dresser

Dreaming of playing football

Why yes - I am a chick magnet!

Big and little

Talking to Auntie V

Family

Mom and little brother

New year

Lalo is making great strides with his physical and occupational therapies. He is gaining head control and neck strength by working on lots of tummy time and sitting up more. We focus a lot of time on his right side, which is weaker from his stroke, and correcting his neck preference towards the left. He is very receptive to all of the exercises we do with him and it is obvious that he works quite hard. We are busy learning everything possible from the therapists so we are able to help him as much as we can, especially once we get him home. Luckily most development for a baby is done by playing, so we are good at that! The occupational therapist is so pleased with his progress that she wants to see him every day instead of three times a week (she was originally worried he couldn't handle that much). All babies that start out so sick get behind developmentally. Lalito was too busy staying alive early on and has spent the first 4 months of his life in a hospital bed. But we are amazed every day to see how hard he works and what new tricks he has!

The last few days his reflux has been really bad. We tried compressing his feeds more to 90 min on and 90 min off, but that proved too much for him to handle so now we are up to 105 on and 75 min off. But I think the change hit him hard and as a result he threw up some important meds and then has added some withdrawal to the mix. We will be so happy when we have eliminated at least 2 of the narcotics - diazepam and methadone - january 20th is the projected date! They are backing off of how much they are fortifying his milk, down to 24 calories per ounce. Last weight we have is 14 lbs 2 oz - with lots of cute rolls ;-)

He was visited by a doctor today to fit him for a helmet. Because of being on ecmo and being so sick he had to stay in the same position and the left side of his head is flatter than the other side. The doctor recommended we wait another 3 weeks or so to optimize the timing he is in it. Hopefully in that time we can continue to make progress with how we position him. Best case scenario we can avoid it all together because it is expensive and insurance will likely not cover it. But he most likely needs it and we are anxious to get him in it it so we are closer to getting him out of it!

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Bath

Not an Elf

Love

Book time

Family picture

The boys

"Baby!"

Brothers meeting!

DC

Well we are finally a bit settled into Lalo's new digs in DC. He apparently did fine on the ambulance ride, sleeping most of the way, and only seemed a little frazzled by all the change and commotion. He is a pretty laid back little guy and has been sharing lots of smiles with his new friends. From what we've seen so far, it definitely is a more relaxed environment and they are very focused on rehab therapy. He will have occupational, physical and speech therapy (at least) several times a week and child life services are involved too to help with the normal play side of being a baby. Their focus right from walking in the door is how to make the transition to home smooth. We have gotten education materials on the meds he is on, been shown how to give his meds through his feeding tube, and started the infant CPR training. It is nice to be able to focus and prepare for bringing him home.

It is also super close to Lalo's work - about 10 min - and a little bit closer to home. Distance-wise it is probably not too different, but at Hopkins the garage is always chaotic and not very close to the nicu plus you have to go through the inner harbor. I always had to leave his bed an hour and a half before I had to get to daycare to make sure I would be there on time. The first day here was super busy and I ended up only leaving a half hour before I had to be there...and I made it! That all adds up to a lot more time we get to spend with Little Lo. And the very best part...siblings of all ages are allowed and encouraged to visit! Yesterday we brought Caleb in to meet his brother for the very first time. We got a great reaction - he had a huge smile and said "baby!". All four of us sat and read a book together. It was wonderful for a brief time to not feel guilty for not being with one of them. Pictures to follow...

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