Open Crib

Millie made it to an open crib today. She looks like such a big girl. She has to hold her own temperature, so she is wearing a onesie, footy pajamas, and is covered with two blankets. We'll see how she does. Sometimes babies go back and forth for awhile. She weighs 4 lbs 6 oz! Just look at those cheeks filling out.

Ruby did fine with her transfusion. She did get some Lasix to help with the extra fluid, but she did not have to go back on the nasal cannula like Millie did with her transfusion. She weighs 3 lbs 11 oz. She lost a little weight during the transfusion because she couldn't eat, so now she is caught back up.

We moved rooms again. I thought we wouldn't have to move again, but the census is down and we're in a room with 4 other babies! I would be upset about the noise, but while I was there my girls monitors were beeping constantly, so we were making the most noise out of the 6. The monitors beep when the O2 sats drop below 87. My girls constantly go up and down. It is not considered a true "desat" unless they stay down and don't bring themselves back up, but the monitor goes off every time it drops. Very loud and annoying.

It's starting to hit me that the girls are actually going to be coming home. It has felt like such a long way off for so long, that I have put off dealing with the logistics of it all. Since we were out of our house this Fall, and I was on bed rest I never put together their nursery. Never fear.....amazon to the rescue and boxes have been arriving daily. They won't tell me when the girls are coming home because they can't, but I do know that when they can hold their temp in an open crib and take all their bottles by mouth then that's the magic ticket. I think it may be sooner that we thought.

Jake is doing better. He is currently off all seizure medication. He has been a little hyper, but otherwise eating better and not too fussy. His MD wants him to do a 24 hour EEG at Vanderbilt. I think that makes sense, because he has not had an EEG in several years. That will tell us if he is having subclinical seizures. I hope we can get this scheduled before the girls get home, but that may not happen. That will be a very "un fun" 24 hours, but we'll get through it. Jake is sleeping in our room for now on a little blow up bed. We're always on seizure watch, but right now more so than normal.

Ruby's Turn

Little Ru Ru is getting a blood transfusion today. Her hematocrit has been hovering just above the level that they like to transfuse, and she dipped down to the transfusion level today. Our nurse was able to get her IV in one stick and she will get two rounds of blood 8 hours apart. She can't eat for 24 hours, so she will probably not be very happy with that. I was able to give her her last bottle at noon today before they started giving her the blood. She is taking her bottles really well. She and Millie are both getting 2 bottles/day. Millie only took half her bottle yesterday, before she got too tired. Our nurses say that Ruby continues to be the feisty one! She weighed 3 lbs 11 oz today and Millie is 4 lbs 2 oz!

This is a picture of Ruby today. She is wearing a little hospital gown that Scott's Aunt Charlene made her. This was after our nurse got her IV placed.

Millie taking a snooze.

Although I worry about the girls all the time, Jake continues to be my biggest worry. He has had several episodes of "abnormal motor movement." It's hard to explain but he will kick his feet, slap his arm and roll his head around in repetitive movements. He has done it twice at school and once at home, but he did it for three hours straight at home. I am not convinced that it is not seizure activity, but his neurologist thinks it is a reaction to the new seizure medicine we started him on. He has been on it a few weeks and his mood has been so much better. The last two weekends have been great, because normally he cries/screams for 4-5 hours/day, and he hasn't done that, but now we have a new problem. We have stopped his medicine and we are giving it a few days to see what happens. If the episodes stop then I guess it probably was the medication. Today he had a small episode at school, then he was very weepy and almost listless at home this afternoon, and he has not been eating much. I don't know what to think. It is heartbreaking and scary, so we could use your prayers that we can find a solution.

Emmett has a cold this week. It only slowed him down for 1 day. Here he is taking a break with our dog Avery. Avery will be 13 this Spring and she is so sweet and lets Emmett crawl all over her.

Small Setback

Spoiler Alert: Millie and Ruby are fine, but Millie had a little setback this week. Millie got her blood transfusion on Wednesday. The blood was given twice 12 hours apart. When I came in to see the girls on Thursday morning Millie's heart rate was hovering around 100 which is low for babies. She had also been put back on the nasal cannula with a little oxygen, because she had been dropping her sats as well. The MD came in, and said it was probably fluid overload from all the new blood, so he ordered a chest X-ray to make sure there was no fluid in her lungs (there wasn't), and then gave her Lasix (a diuretic) to make her pee off the extra fluid. That seemed to help and her heart rate improved. Just in case she had an infection going on as well they did not start her feeds back, so she got TPN through her IV line for the next 24 hours. They started her feeds back slowly yesterday, and by last night she was back on her full amount and doing fine. They also took her nasal cannula back off yesterday. She did get her first bottle yesterday and just like Ruby she did great. Ruby continues to get 1 bottle/day.

I haven't checked their weights from last night but the night before Millie weighed 3 lbs 15 oz and Ruby weighed 3 lbs 7oz. Ruby is also wearing clothes now!

Millie getting her first bottle. Sorry Millie when you read this one day that your hat looked so goofy!

The girls aren't even home yet, and I seem to be losing my mind more and more every day. I walked out of the house this week and this is what I saw:

That is Jake's cup of milk on top of my car which had been there overnight. Ha Ha I thought - can't believe I left his cup on top of the car. 3 minutes later as I got to the top of my street I heard a big "THUNK." My first thought was that something hit my car and then I remembered the cup. So I saw the cup, took a picture of the cup, then still left it on top of the car. It was raining so I kept going and didn't stop to look for it. Our nanny spotted it later that day in a neighbor's yard. I finally went back and got it the next day.

Guess who's eating?

Ruby got her first bottle today. 

I expected this to be a painful and slow experience. I thought Ruby would take a few milliliters then we'd eventually have to stop because she would fall asleep etc. Nope - she sucked the entire bottle down in 15 minutes with one break to burp. There are some tricks to feeding preemies. We fed her in a side lying position, and we would let her take a few swallows then angle the bottle so milk was not coming out and she could take a break to breathe. The hardest part for preemies is coordinating the "suck, swallow, breather" so we can help them do it in the beginning as they are learning. She will continue to get 1 bottle/day and the feeding therapist said she will probably quickly advance to 1 bottle/shift, since she did so well today. Millie would have gotten her first bottle today, but she ended up needing a blood transfusion. She has been teetering on the low threshold of where they usually transfuse for a week or so and her hematocrit dropped a little more today. The down side is that she had to get an IV and she can't eat for 24 hours. Hopefully this will make her a hungry girl for when she takes her first bottle tomorrow.

I forgot to get Millie's weight today, but two nights ago she was 3 lbs 12 oz! Ruby was 1500 grams last night (about 3 lbs 4 oz). If she weighs 1500 grams or more again tonight then she can start wearing clothes tomorrow.

Millie weighs 3 lbs 9 oz and Ruby is 3 lbs 2 oz! Both girls have gotten 3 hours of kangaroo care every day for the last 5 days thanks to my Mom, Scott's Mom, Step-Mom and Scott over the weekend. I try to alternate who I hold each day, so that I can spend time with each girl. Millie took her pacifier like a champ today, so I think she is getting close to trying a bottle. I talked to the neonatologist about when we would start bottles today. He said usually at 34 weeks gestation unless the baby shows good signs before 33 weeks (taking pacifier). He was going to have her try 1 bottle/day starting today, but since he had never seen her before, he wanted to wait a day or two. I think that makes sense. I have not seen Ruby take her paci as much as Millie, but I think she has taken it some as well.

Ohh...forgot to tell you. Millie is off the nasal cannula. They took her off yesterday, and she has done great with no major desats. I can't believe both girls are breathing room air. I feel incredibly blessed for their progress so far, and thankful for all the prayers, well wishes and amazing nurses and doctors taking care of them in the NICU. I had to do a phone interview with the social security office today. It took 45 minutes to answer 6 questions but one of the questions was "Are there any family and friends that have shown interest in the girls?" My response was "ummm, pretty much everyone we know." I thought that was such an odd question, but the interviewer's response to my response was "you can only pick one." I think she just needed a back up person to put on the form, but I had no idea that's what she meant. Ruby and Millie will get medicaid insurance as a back up to our insurance while they are in the hospital. They qualify for this based on their "extremely low birth weight." That is a category  by the way - extremely low birth weight is obviously worse than "very low birth weight" which is the next category up. We are pretty much Cigna's worst nightmare as a family, so this will be helpful to have TennCare as a back up if only for 3 months. The last time I glanced at my hospital bill (before the girls were born) it was $60,000. Yikes!

Both girls have had low hematocrits (anemia) for the past week or so. They have been monitoring it every few days. This is a common problem with preemies because red blood cell production stops temporarily after birth. This happens with full term infants too, but it lasts longer and is more severe in preemies. The rule of thumb is to do a blood transfusion if the hematocrit is 25 or less. Today Millie was 25.3 and Ruby was 26. Last week Millie was 25, but she has not been symptomatic ("meaning more apnea spells or poor weight gain"). She has been thriving, so they have put off doing a transfusion with the hope that her hematocrit will go up. That is still the hope, but they'll check both girls again in 2 days.

Is anyone watching "The Bachelor?" I am half paying attention and half blogging, but Scott keeps commenting and asking me questions. He is paying more attention than I am. He likes to pretend that he is above watching any reality TV, but he's busted. I wish you could hear the back talk to the TV coming from  
his corner of the room. He also just told me that Emily's face twitches like mine when she cries. Not sure how to take that, but at least she is the PhD student.

Pictures

Millie wearing her first clothes!

Ruby off the nasal cannula!

Today's stats: Millie is 3 lbs 6 oz and Ruby is 3 lbs! They are really starting to look like real babies now and get some fat in their cheeks.

Yesterday the girls were 33 weeks gestational age. The neonatologist told me I could try breast feeding with them once/day. I was able to try with Millie yesterday and she actually latched on. She did not take in much, but the fact that she latched on for about 5 minutes was great. We should be able to start bottles soon (much easier for them than breast feeding). Millie actually sucked her thumb for about 10 minutes while I was holding her today. It was the cutest thing, and maybe she will be a thumb sucker like her older brothers. I couldn't believe she could actually coordinate that at 33 weeks.

Ruby is still doing great off the nasal cannula. She has not really had any desats. Millie still has a few even on the oxygen, but her lungs just need a little longer to get stronger.

More pics you say? Twist my arm......here they are:

Emmett wanted to wear his rain boots with his PJ's tonight.

Emmett also wanted his lovey (Baa) to take a bath with him tonight. Good thing we have a back up Baa.

Jake doing some mall walking - his favorite weekend activity (other than swimming).

Big News Today

In the right corner of the Lilly Pad weighing in at 2 lbs 15 oz is Ruby "I don't need any O2" Doolittle. 

In the left corner of the Lilly Pad weighing in at 3 lbs 5 oz is Millie "I'm so big I can wear clothes" Doolittle. 

Ruby is off the nasal cannula as of 11:30 today! She has tolerated it great without any desaturations. She was decreased to 0.5 L on the nasal cannula yesterday then off today. It seems fast and sudden to me, but she was ready. She has been on room air level of oxygen for awhile, so she was just getting the pressure from the nasal cannula. Millie has been lowered to 0.5 L on the nasal cannula and is getting anywhere from room air oxygen (21%) to 25%. Millie weighs 1510 grams as of tonight. She had to reach 1500 grams in order to wear clothes. She will still be in the isolate but it will not be temperature controlled. I think she is ready - we are both practically sweating after we do kangaroo care lately. That girl can heat up!

The occupational therapist met with me today and showed me how to do infant massage. It is modified somewhat for preemies, but it is to help loosen tight muscles which preemies tend to have and to also provide positive touch. I'm a little leery of it because everything I've read says not to stroke a preemie and the touch I am providing should be kangaroo, but it was deep slow strokes and Millie did seem super relaxed and happy during it. I can see that it will be really helpful for both girls in another couple of weeks. Preemies want to splay their arms and legs out instead of staying in a flexed position like typical newborns. A lot of the positioning aids they use are to help the babies stay in the flexed position.

I'll try to get some more pictures tomorrow!