Happy 4 month Birthday Millie and Ruby!!!
I can't believe the girls are 4 months old today! I have about 10 minutes to write this update because everyone is relatively quiet in our house right now. The girls have really woken up lately, but unfortunately that means they are often crying. I think they get over stimulated and have trouble falling back asleep when they have been awake too long. I need to learn to read their cues better, and I suspect that it will get better with age, but there is still no real schedule to their awake/sleep cycles. I feel guilty that we don't have more quality awake time, but it truly seems like they are fussing a lot of the awake time, so we can't do tummy time or whatever it is that I feel like they/I should be doing. I am trying to stay cognizant of the fact that they are really only 1 month old in adjusted time, and things have a way of working out. I mean...they won't still be getting up at night forever, right? The sleep deprivation is starting to get to me. I have a laundry list of things that I have done/forgotten lately that I could tell you about, but I'll choose just one. I dropped off some trash at the dump near our house (sounds trashy but it's an upscale dump if you could qualify dumps as such). Anyway, I went from the dump to Publix which is maybe a mile away. About 3/4 of a mile I started to think it felt really airy in my mini van. I kept thinking how fresh it seemed, but I checked my windows and the sunroof and nothing was open. It wasn't until I was turning into the Publix parking lot that I noticed that I left the rear door completely open and up in the air.
Someone is constantly crying in our house lately, and that doesn't include the children.
I was hoping to give you a good report this week, but we had to take Millie to the hospital last week. Long story short she didn't look good last Monday. She slept most of the day and looked really pale. I hooked her up to Ruby's pulse ox monitor and she was satting in the 70's. I wasn't sure if it was real or not because once again the probes were not working that well. I called the oxygen company and had them bring out new probes at 9 pm. She continued to bounce up and down and finally at 2 am I felt like her sats were staying down more than up. My Mom was in town, so I had Scott drop Millie and I off at the ER. They really should give out frequent flier cards - we should have Platinum status by now. I am starting to worry that they have Munchausen by Proxy written by my name. People are starting to recognize us in the ER and I find myself giving directions to other parents ("Oh the bathroom - around the corner on your left."). Agh......They put Millie on some oxygen and did some tests. She tested positive for Rhinovirus and Enterovirus - both cold type viruses. Emmett has had a runny nose and congestion which I thought was allergies, but I guess it was a cold because he woke up with a double ear infection two days later. I took Ruby to the hospital to visit Millie (before I knew she tested positive for viruses but frankly they were both congested, so I know Ruby had it too). I was actually worried about Ruby, so I thought we would hang out at the hospital and if Ruby started desatting then we would already be there).
Ruby visits Millie in the hospital.
I have taken Jake to the neurologist and the neurosurgeon lately. I'll have to write another update about that, but he is doing well on Depakote and we're going to do some more tests to see if there is a surgical option for him. He is tolerating the Depakote and not having seizures, but I have noticed that his impulsivity/aggression is a little worse. He has been all over Emmett the past few days. He grabs him by the hair and tries to pull him to the ground. I make a big show of putting Jake in "time out" when this happens for Emmett's sake, but Jake continues to do it. He has been trying to bite me, pinch me, hit me in the face a lot as well. Not new behavior but maybe increased. I am really worried about protecting the girls from him. I had the same worries with Emmett when he was a baby, but Jake was not as mobile then as he is now. There is really no safe place (another reason the girls can't be on the floor for tummy time more often). I never leave Jake and the girls in the room together. On a positive note, Jake is doing amazing with his swimming. I need to figure out how to upload a video to blogspot, because you need to see this. Last Saturday he swam 25 yards BY HIMSELF using flippers to help. He has come such a long way, and it is all thanks to his amazing swim teacher Beth Scruggs. I could write another entry just about her, but I have tears in my eyes just thinking about all she has done for Jake and the Nashville community. She coaches the Special Olympics swim team, and she has such a gift that she is sharing with us.
No more time to write tonight. I still have to tell you about what miracles my girls are and all they have survived. To think that when I was 16 pregnant and diagnosed with Twin to Twin Transfusion Syndrome that both girls were just weeks away from death. Millie was almost in heart failure and Ruby was shrink wrapped in her amniotic sac. Ruby was donating all her nutrients to Millie, but it was too much for Millie and overloading her heart. A fatal situation for both of them which is why I was sent to Cincinnati for fetal laser surgery. Another entry but I feel so blessed to have these girls here (even when they keep me up all night!).
Happy Easter from Millie!