5 Months Old

Lynnea is five months old today. She had a pretty good day. This afternoon she was running a low grade fever, but it went away, and wasn't high enough to be too concerned about. She is no longer on any oxygen support, at least for now (we'll see how things go over the next day or so before we know for sure if she can go without it). During her time with the speech therapist today, she had a difficult time trying to suck off from a nipple, so we're still a long way from really going back to bottle feeding. Lynnea slept most of the day, but during the times that she was awake, she enjoyed sucking on her fists, and trying to get her thumb in her mouth.

One Step Closer to Home

Lynnea has moved over to 5A, which is just one step away from going home. She had another good day; she is tolerating weening off from her narcotics pretty well without any major withdrawal symptoms. She is off from her high-flow oxygen, but still requires some low-flow oxygen support (flow only, she's on room air). She is still full of smiles, and looks great.

Still Looking Good

Lynnea had another good day today. She is completely off from Precadex, which was the only thing that was keeping her in the PICU, so hopefully, we're still on for moving to 5A tomorrow. We were told today that the big things that Lynnea still needs to work on before we can go home are her feedings (ideally she could be bottle feeding before we go home, but at a minimum we would like her on bolus feedings at least during the day), and weening a few more of her meds down to a manageable amount to give at home.

Happy Birthday Ashlyn!

Today we had a birthday party for Ashlyn in the family lounge at the hospital. She enjoyed playing with her balloons, eating pizza and cake, and getting to play in the playroom. She was very excited about many of the gifts she got, but especially liked her Jack-in-the-Box. Unfortunately, we were not able to have her blow out candles on her birthday cake because it would have set off the fire alarms.

Lynnea also had a good day; tomorrow she should be completely weened off from her IV drips, so all of her medications will be given through her G-tube. The Speech Therapist continued working with her on drinking from a bottle, and today she managed to take a little without dropping her blood-oxygen saturation levels, which is exciting.

Still in the PICU

Lynnea gets to hang out in the PICU at least through the weekend; I think this has more to do with the availability of beds in 5A than her condition. This morning Dr. St. Louis was bold enough to throw the word "home" around as a possibility in another 10-14 days, so there's still a small chance that we could make it home before Easter. We still haven't heard any sort of longer-term plan for her, but I assume that this is because they need more information before they will decide what to do next.

Thursday

Lynnea had another good day, though I thought she was awfully sleepy all day. She had smiles for people, and managed to keep her saturations in a good place most of the time. There was talk during morning rounds about possibly moving her out of the PICU tomorrow and onto the general floor. They attempted to bottle feed her once today, which she seemed to enjoy; unfortunately, her saturations dropped while they were feeding her, so they decided that it's still too much work for her to bottle feed, so we'll stick with the G-tube feedings for now. It is reassuring though to know that she still has a good sucking reflex and is still able to coordinate the breathe-suck-swallow actions needed to bottle feed.

Another Good Day

Lynnea had another pretty good day today. She was full of smiles for just about everyone, and her nurse said that she almost giggled, but not quite. This afternoon she was taken off from Milrinone, and so far seems to be doing OK (they put her back on Digoxin and Captopril to take the place of the Milrinone) but tomorrow will be a better indicator of how she's tolerating that because Milrinone tends to stay in a person's system for a while. Tomorrow they will also be doing more weening off from the narcotics that she's on, so I expect things to be a little more difficult tomorrow, but we'll see.

Smiles

Today Lynnea had lots of smiles for just about everyone; she also had a few episodes of inconsolable crying, but I know she still has plenty of reasons to be miserable some of the time. They took out her arterial line today, so now she only has her PICC line. They talked about trying to take her off from Milrinone possibly by the end of the week. Overall, she had a good day. Snuggle time went better today than yesterday, and she took a nice nap in my arms this afternoon.

Holding My Baby

Today Lynnea was able to snuggle with me for the first time in a very long time. It didn't go as well as I had hoped, but in the long run she was somewhat tolerant of it once she got over the misery of being moved from the bed into my arms. Hopefully tomorrow we will have better snuggle time. Lynnea also had her chest tube removed today, her Pacer wires are out, and she's down to just her PICC line and an arterial line for IV's. She continued to keep her saturations at an appropriate level throughout the day. Her echocardiogram from yesterday showed some improvement in heart function, which is good news.

Grumpy Baby

Lynnea was extubated this morning around 7am. She's been doing OK off the ventilator all day, but she still needs some oxygen support, so she has a nasal cannula, and is on high-flow oxygen, which drives her nuts. She's been awake and a bit on the grumpy side all day, with good reason, of course -- I'm sure her throat hurts a lot after being on the ventilator with the tube down her throat for so long (Ashlyn called it a "yummy straw" when she saw it. . . someday Lynnea will have to explain to her that the ventilator tube is indeed not a yummy straw), and now that she's not sedated, she tries to move around some, which probably causes her chest to hurt. She keeps looking at me like she really wants me to pick her up and snuggle her, but I can't do that yet, and she doesn't understand. I tried giving her a Nuk, which she seemed to like at first, but then she became frustrated with it because she can't quite remember how to suck on it consistently. She had an echocardiogram this afternoon, but I haven't heard what the results were yet; they will probably discuss it in morning rounds tomorrow.