Friday, April 20, 2012

Double Trouble

We are still at the Monroe Carell Jr Children's Hospital at Vanderbilt. I honestly thought we would only be here a few days when Ruby was admitted last week, but 8 days later we are still here. Ruby was admitted last Thursday then Saturday she developed a fever and a chest X-ray showed pneumonia. She was very congested and uncomfortable the first few days and required pretty frequent suctioning. Millie was great all last weekend then Monday night she developed a slight cough and Tuesday morning she woke up with a fever. I took her straight to the MD, but her lungs were clear so we came home with instructions to monitor her closely. She went downhill pretty fast all day. She vomited several times and did not want to eat. She was listless and not herself at all. When I checked her oxygen level it was dropping and bouncing up and down so I took her back to the MD. Our MD was off that day but two of the other MD's agreed that she did not look well and sent us to the ER. So while Scott was up on the 8th floor with Ruby, I was down in the ER with Millie. Millie's chest x-ray also showed pneumonia and she was admitted and started on antibiotics. Ruby started getting progressively better and needing less and less suction and then yesterday they took her off oxygen and she was able to maintain her sats. After 24 hours off oxygen she was discharged. Millie is doing better too but she is a few days behind Ruby on this illness and she is still on a little oxygen. We hope to have her home in a few days. The girls were put in separate rooms but across the hall from each other. When I was there by myself I was running from room to room but they finally worked it out so that Ruby could "visit" Millie during the day. She had a portable monitor and a bassinet to use. We tried to wheel her whole bed in the room and although it fit, it was a liability for the hospital and they made us move it back. At night they went back to their separate rooms which meant that we had to have two people spend the night. Thanks to babysitters and family we have made it work. Thanks to Pam, Margaret, Lauren, Laura and Mildred for taking the night shift some. We couldn't have done it without you. At times like this I realize how blessed I am with amazing family and friends. I can't even list all the names of people that have brought us dinner, taken Emmett to school and for play dates, neighbors that have come over to sit with my kids and help out or run over when they saw an ambulance. It gives me so much comfort to know that I can call on people to help when I am in crisis mode.

I have just gotten home from the hospital with Ruby and Scott is staying with Millie. It's late but I have been trying to write this entry for days. The girls have become quite colicky lately. I think this is all I can do because I keep shutting my eyes. More later and pictures. Elizabeth

Friday, April 13, 2012

Guess where we are?

One guess as to where Ruby and I are? Yes, that's right - the Monroe Carell Jr Children's Hospital at Vanderbilt. Ruby and Millie have been congested since Millie was here last week and diagnosed with a virus. It has not affected them too much but Ruby's congestion started getting worse this week. She had an episode Wednesday where she looked like she was turning blue. I took her to the MD, but once we were there she looked nice and pink and her lungs were clear. Later on Wednesday she started coughing. The coughing got worse over night, and she would not eat much and seemed really uncomfortable. I tried hooking her up to the pulse oximeter, but I really don't think it is accurate. I am trying to go more on how the girls look and are acting. She looked pink, but her cough sounded bad, so I took her back to the pediatrician yesterday. He agreed she did not sound good, so he sent us to the ER. We were hoping that a breathing treatment and more accurate pulse ox monitoring would do the trick, and we would be able to come home. She had a breathing treatment with hypertonic saline. This is basically saline with a higher salt component which irritants the lungs and thins out the mucus to help get it out of Ruby's lungs. They followed this with deep suction which involved sticking a tube down her nose and into her lungs to suction her out. This seemed to really help her, but her sats continued to drop into the upper 80's, so the MD admitted her so she could get some extra oxygen and more breathing treatments if needed.

I think Ruby got over stimulated and also didn't feel well, because she cried for 3 straight hours last night from 8 to 11. It's hard to walk a baby around when they are attached to the oxygen on the wall. I had about 3 feet that I could pivot in and nothing was making her happy. The respiratory therapist finally came in and gave her a racemic epinephrine breathing treatment. She had developed a stridor (high pitched breathing sound which indicates swelling in the back of the throat) and wanted to use the epinephrine to decrease the swelling. This seemed to help and she finally calmed down. She has done well the rest of the night and this morning. She is coughing, but she has fed and rested well, and they have lowered the amount of oxygen that she is on. The plan is to keep her here tonight and hopefully she will do well and get to come home tomorrow, but we will see. We are currently still in an ER room. The hospital is over crowded, but we hope to get a regular room later this day. It's not too bad, but sharing a bathroom with the neighboring room is a little weird. It seems like there are 20 people in there with how often I hear them in the bathroom, but they probably didn't appreciate my middle of the night bathroom usage either!

We have no idea if this is the same virus from last week or something new. This is a prime example of how prematurity continues to affect us. Premature babies are not just small newborns. They have so many risks to their health and development that we can't always predict. My hope and prayer is that one day they will not be affected by their prematurity, but there are still a lot of unknowns at this point. They have certainly done well so far even despite our frequent hospitalizations, but just because they start to gain weight and look like "normal babies" we can not let our guard down. I think the general public thinks that once you get out of the NICU and gain weight that you are just like any other baby, but that is not the case. Speaking of weight the pediatrician this week Millie weighed 9 lbs 12 oz and Ruby weighed 9 lbs 10 oz!

Ruby resting!

Monday, April 9, 2012

Happy 4 Month Birthday

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!