The girls are now 6 lbs 7 oz. They have been teetering around 0-10 gram difference between each other the last couple days. Brynlee has yet to beat Josie for weight, but did equal her the other night.
We had the baby shower for the girls back on the 19th. It was so great to see almost everyone I love be there for such a special time. It took a few days to get everything put away and I still have some organizing to do, but its slowly getting there. I think we have almost everything that we need for when the girls get to come home.
Brynlee tested her first bottle back on the 21st. She did great and was able to get 7 mL. She did drop her stats, so we stopped. We waited and waited for her to be awake enough for the speech therapist to observe her in the following days and she never would be in the mood to eat when she was around. She tried this morning and only took two sucks and decided she was done by dropping her oxygen and heart rate.
They took the girls off of vapotherm yesterday, but ended up putting Brynlee back on a cannula last night. She kept dropping her stats and running lower in oxygen. The cannula is straight from the wall and doesn't have the huge tubing attached, so its easier to get her out of bed. It also goes down to .5 liters where vapotherm only goes to 1.0 liters for pressure. Josie is still rocking on breathing on her own. She surprises me all the time by making such big improvements so quickly!
The girls' eyes are looking better. It sounded like Brynlee's retinopathy of prematurity was almost gone. I am not sure how it works other than excessive blood vessels can grow - so maybe there isn't any additional vessels on this last exam since the previous exam? Josie's is showing improvement from last time, so both girls will see her in two weeks. It should be Brynlee's last time and hopefully next time they will say only one more time for Josie. Wishful thinking doesn't hurt!
The girls had a hearing exam today that they passed. I wasn't there for it, which I would have loved to see. :(
The girls had a head ultrasound last week. Brynlee's was fine and Josie's showed a few issues. They did a MRI for a closer look and it didn't show anything different than the ultrasound. I still need to find out what exactly they found or if there will be follow-ups, since I kept missing the doctors regarding this. It sounded similar to a light bruise and nothing major.
We found out a couple weeks ago that Josie has a paralyzed left vocal cord. Our primary nurse and I were talking about the differences between the girls. Somehow I brought up that she used to cry before her PDA surgery and no longer cries. They had an ENT come in and he found the left vocal cord was paralyzed. Luckily it is parallel with the other vocal cord so hopefully it will make up for it or maybe the nerves will regenerate/heal itself. It's a waiting game on what all this injury will entail. Her poor little cry is so quiet and raspy. This also put a halt on nursing as it can affect her airway and make aspirating easier. They wanted to do a swallow study on her before trying a bottle and nursing, but wanted to wait for her to mature a week or so.
Today we did the swallow study on Josie with breast milk, formula and formula with rice cereal. She took a bottle with breast milk mixed with barium first. She tried it three times as they imaged where it was going. It was pooling and then going near her airway. As she got to the third try and became more tired, it was getting closer to going down the wrong tube and did have a little aspiration. Next they did 3 tries with formula, which is thicker; and then formula with rice cereal. As she became more tired on the 3rd tries, it was entering her airway even with the rice cereal mixed in. Her vocal cord and another flap is what keeps fluid from entering the opening and going into her lungs. With chronic lung disease, it is even more risky to allow particles into the lungs to irritate them. The speech therapist said she did great on the coordination for sucking, swallowing and breathing; but anatomically, she just can't take a bottle safely. She thinks neurologically, she is fine, though. At this point, we are looking at going the G tube route. The issue isn't going to change anytime soon, so we can't really wait it out. We can always revisit it all in a few months if we feel her voice is getting stronger, signalling that her vocal cords are strengthening, but at this time its about getting her home. We have yet to hear what the neonatologist says since it came up pretty late in the day. It looks like physical and occupational therapy will also go into play by working with positioning, tummy time, neck strength. We may be allowed to do 5 mL to 10 mL once or twice a day depending on how much risk they think is there. This would allow her to still have the taste, sensation, movement, etc. She will need an upper GI scan and a digestive test for positioning and to see how she is digesting her food before they can put the G tube in. It was quite the shocker and overwhelming today, so hopefully we get more answers and timelines in the next few days on what to expect.
Brynlee's swallow study should be coming up soon and she definitely has the vocal cords working. She is a little quiet (which may be from smaller, immature lungs), but I think she is still trying to get the hang of breathing and eating as she matures. She doesn't ever miss out on the chance to voice her opinion and grunt at you if she isn't liking something.
Now for fun stuff- pictures!
Josie
Brynlee
Brynlee
Brynlee's tongue appears frequently - usually in a not so peaceful expression!
Brynlee
Josie
Brynlee, Ty, Josie
Brynlee
Brynlee
Josie
Josie getting her face cleaned up
