a guy and a bee

a collection of random thoughts and ideas from me, her, and sometimes us

Two good days: BBA

Apologies for no update yesterday. It was a good day though. BBA was drinking bottles like a champ and was awake and alert when we were both there for visits. BBB attended his first Monday night dinner and was so enthusiastic about the outing he slept through the whole thing. 

Today, BBA was taken off all nutritional supplements (a good thing) and his blood sugar was holding steady while eating 60mL every three hours!  Still on glucose and blood thinner. Antibiotic ends tomorrow. 

Now the waiting game begins … as long as he has a consistent blood sugar reading and eats by bottle every three hours, they will wean him off the remaining glucose. Once off, he will need to maintain his blood sugar and eat well for several days for them to consider transfer/release. He can come home on the blood thinner if everything else is ok. Fingers crossed his system is up to snuff. 

Sunday: BBA

Slept well overnight and looks great. Housed a bottle while I was with him and was an excellent snuggler. Looked less yellow, but his bilirubin had yet to be retested for the day. 

Also a very proud moment for the situation we are in…I got pooped on!!!!  His belly was down five centimeters from its high last week. It seems like the antibiotic and his system overall are working well. 

Friday: BBA 

Today was a good day. Things are looking up again. His belly has softened and now we are simply waiting for him to start passing air and stool on his own again. Once he does, which the doctors think may happen today, they can consider starting him back on food, maybe as soon as tomorrow. All other reports are good and we got lots of snuggles in. 

Thursday: BBA

He was sleeping well yesterday and being weaned off his glucose and insulin medications entirely. All initial issues have now been resolved, for the time being. He had two x-rays of his belly. Results will be back today (Friday).  Depending on those results, he could be back on food today or could be off food for a week. Will update later this morning. 

Wednesday: BBA

It was a good day…glucose IV was turned down again and he is remaining stable. All other stats are normal. He was eating well from a bottle. His blood thinner finally reached therapeutic level, so they removed the old PICC line. Overall, progress. 

Last night we were notified that there was concern for belly rigidity and they were discontinuing all food (bottle and tube feeding) until they could determine the cause. They drew blood and started him on an antibiotic until they had more answers (today). 

Tuesday: BBA and BBB

BBA: I had an amazing surprise when I arrived this morning…he was in a “real” crib!  I never thought I would be so happy to see my kiddo behind metal bars. 

 

I also was able to participate in rounds and see the doctors, for the first time, looking incredibly positive and optimistic about next steps. 

As of last night, he is only on his medication to regulate his insulin, his glucose IV, his blood thinner, and his feeding tube. All other tubes/IVs have been disconnected. Today they began aggressive bottle feeding, both increasing the quantity of food he is getting in his feeding tube and giving him a chance to bottle feed every four hours. They are also significantly reducing his glucose IV because his blood sugar continues to rise. As a direct result, they are going to start weaning him off the medication to regulate his insulin. The results of the repeat eccocardiogram came back and all initial concerns have been resolved. 

Not ready for release, but much more progress and improvement and good news than we have had in the two weeks he has been in the NICU. 

BBB: this afternoon we decided to go get @littlepund from daycare together. He was a big hit with the ladies! Plus, he and @littlepund got some amazingly adorable bonding in on the drive home…

  

Monday: BBA and BBB

BBA: good things today. He has been completely weaned off of supplemental oxygen and he is breathing great. And his nose is so little and looks just like BBB’s without the cannula. They significantly decreased his glucose IV as a result of consistently good blood sugar readings. They ran the new PICC line early this morning and the blood thinner is working to break up the clot around his original line. They should be able to take it out in the next day or so. He is eating really well and was awake and calm today. Results from the repeat eccocardiogram should be back tomorrow. And he looks like dad…aka awesome; nose is all mom though. 

BBB: he spent the afternoon awake and curious. Just fell asleep and is snoring like a champ…just like dad. 

Sunday: BBA and BBB

BBA: his oxygen was weaned down to one liter overnight and the plan is to take him off the supplement entirely in the next day or so. He is doing great breathing and they do not think he needs to supplement anymore. 

His blood sugar stayed steady overnight and they reduced his glucose IV fairly significantly for such a tiny person. They are also considering reducing the medication he is on to test his system for his insulin and glucose balance. 

They inserted a catheter in his leg to administer the blood thinner to break up the clot in his arm as a result of the PICC line. They have not yet inserted the new PICC line. 

He still has his feeding tube in, but also ate via bottle this morning and did great. This one is REALLY exciting as he has to be able to consistently eat via bottle before he can be released (after all other issues are resolved). 

He got a bath last night for the first time making him smell much better (less hospital, more baby). It also allowed us to truly experience the level of peach fuzz he possesses. Super cute!!!!  And they made his bed with his PBK blankets; hospital incubators are much more adorable when adorned with Pottery Barn Kids blankets. 

BBB: still sleeping and eating (and pooping, yes, I went there) well. He is awake more during the day and has his head up and he is looking around. He also didn’t seem to mind when @littlepund tried to pull his “shoes” off (his sleeper had shoes built in). 

Saturday: BBA, BBB, and @littlepund

BBA: he looked good today and was in his swing when I got there. His oxygen supplement remains at 21% but the quantity has been reduced to 2 liters; they are hoping to wean him off the supplement in the next few days. They have increased the amount of milk he is getting via feeding tube and hope to continue to do so each day. The medication they started yesterday has already increased his blood sugar dramatically which means his glucose IV will begin to be weaned to test his system. The endocrinologist is also recommending bottle feeding instead of the feeding tube since he is tolerating the milk/formula so well. His left eye is no longer swollen shut (he has been excreting fluid like a champ) and he looks less puffy overall. He has developed a clot in his right arm due to his PICC line. They have started him on a blood thinner to break it up and will be running a new PICC line this weekend as it is the only way he can get his glucose. Overall, a good day. 

BBB: he has enormous eyes, which you can see now that he is awake more during the day. He slept well again last night in his crib and continues to eat well too. He is very curious and likes to get his head up so he can see what is going on. 

@littlepund: she had a great day today playing outside with her pirate ship and sandbox. She has been doing well with BBB at home considering she is not yet two and thinks he is “her baby.”  We continue to work on being gentle, but I think that may well be a lesson for life. 

Friday: BBA and BBB

BBA: he is doing well today and got to hang out in a swing for a while. He seemed to like the change in scenery. Glucose and insulin are holding steady which is progress on its own. If he continues to respond to the medication he is on, they may begin to decrease his glucose drip. Supplemental oxygen is down to 21% (the normal amount a human breathes in). They are continuing to give him oxygen via cannula to ensure the quantity he is taking in. He is taking in 6mL of milk per hour by feeding tube (double the amount from yesterday) and they are hoping to continue to increase that amount. Once he is off his IV they will switch to bottle feeding. He was able to keep his pacifier in on his own today; new skill!

BBB: he had a thoroughly uneventful day of sleeping, eating, and pooping…i.e., normal baby!!  He is waking up more during the day and wants to look around. We let him play on his tummy for a little bit and he seemed to enjoy the activity. Slept well and in his crib again last night. Fingers crossed it continues. 

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