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!

Kangaroo Redefined

Millie weighs 3 lbs 1 oz and Ruby weighs 2 lbs 11 oz. The girls' are so close to being able to wear clothes and be on air temp in their condo's (incubators). Right now they are only in diapers, but the condo's are heated based on a thermometer probe that is attached to their skin. If they get cold then the condo heats up and vice versa. Once they reach a certain weight (now I can't remember what it is exactly because they told me in grams but Millie is very close), then they will turn the warmers off, and see if they can hold their own temperature. The girls were also moved up to the 8th floor (also called the "Lilly Pad") which is considered the step down unit. The Lilly Pad is where the more stable babies go that are feeding and growing. I didn't expect to be moved so soon, but they needed the space on the 7th floor for some sicker babies. It's a good thing to get moved, but it is an adjustment. The girls condos are now next to each other (if I sit between them then I can almost touch both condos where previously there was a wall between them), but we're also in a room with 4 beds total. Right now there is only one other baby in the room, but I do feel like the noise and activity level on the 8th floor is higher than our quiet area at the end of the hall on the 7th floor.

I've been doing some research on kangaroo care, and I had a chance to talk to a physician that has done a lot of research on premature infants. She told me that the two most important things I can do for the girls is to provide them breast milk and to do kangaroo care. Preemies are born with immature intestines, and they are at high risk for a condition called necrotizing enterocolitis (NEC) which can be fatal. Preemies fed breast milk are much less likely to develop NEC.  Thankfully milk production has never been a problem for me. I am spending roughly 2 1/2 hours per day pumping (split up over 7 sessions), but I can't imagine not doing this for them.

I had a long discussion with the physician I spoke to about kangaroo care. She told me that I should really be holding the girls for 3 hours at a time. The stressful part for them is getting them in and out of the condo,  but the kangaroo care itself has so many benefits. She did not recommend holding the girls at the same time, because it is hard to support their bodies in the right position for them to breathe well. I am supposed to be reclined at a 30 degree angle and to hold one hand under their bottom and the other hand at their shoulders, so that their head is angled upwards. It's all about being calm and quiet to mimic what it would be like in the womb. I should cover their eyes with a blanket so it is dark. Kangaroo care has been shown to improve brain development (more neural synapses are formed during kangaroo care) in addition to increasing growth and weight gain, decreasing stress for the baby and the Mom or Dad and improving heart rates and breathing etc. I knew all this about kangaroo care, but I had been told that I was only allowed to hold the girls for 1 hour each. I have definitely felt like the girls sleep well when we're doing kangaroo care, and it feels wrong to disturb them after only 1 hour (or really less by the time they get situated), but I thought the MD's must know best if they were telling me to only do it for 1 hour. So.....I was even more stressed out after this conversation because what she said seemed right and why was I being told to only hold them for 1 hour? And why did no one tell me to recline to 30 degrees and how many times have I talked during kangaroo care when I should have been quiet?

I talked to the girls nurse on Friday about increasing Kangaroo time, and she was very supportive and agreed that the research she had seen said that 1 hour was the minimum not the maximum. The Nurse Practitioner wrote a new order and Saturday I held Ruby for three hours straight. She did great, and we both took a nap. There is no way that I can hold both girls for three hours every day (which would be 6 hours total), but it should still benefit them if I do each one every other day. Scott actually went today and held Millie for three hours. I also asked the Nurse Practitioner if we could decrease how often we are bathing the girls. They have been getting baths every 3 days, but this is not a pleasant experience for them. The feel of the wash cloth, the cold, the stroking etc is all negative stimulation for them and once again we want to replicate what would have been going on in the womb. Babies in the womb are not clean! The NP agreed that we could decrease time between baths.

I am kicking myself for not making these changes sooner, but at least I have been doing some form of kangaroo care from the beginning. The nurses have told me that I kangaroo a lot more than most of the NICU Mom's that they see (again why? is no one giving other Mom's this research?). I plan on looking into this in the future, so I'll keep you posted (hold me to this because I think this is important).

Double Time!

Millie and Ruby together again. Hard to believe they spent 27 weeks together and now have been separated since birth. I got to the NICU today and the respiratory therapist asked if I wanted to hold them together. YES!! She got a portable oxygen unit, and they were able to hook Millie up at Ruby's bedside. There are extra monitors at each bedside as well, so we were able to monitor both girls while I held them. It was amazing to see them together. They would occasionally open their eyes to stare at each other. At one point they both had an oxygen desaturation at the exact same time. Looking at the picture, Millie is in the pink and red hat and Ruby is in the pink and green hat. Now that the set up is there, I can continue to hold both of them together!

Millie now weighs 2 lbs 15 oz and is 16.5 inches long. Ruby is 2 lbs 9 oz and 16.3 inches long. We thought Millie might need a blood transfusion today (she is anemic - common preemie issue) but she is borderline, and they will recheck her blood in a few days. Hopefully she will not need one. They are both still on the 1 L nasal cannula with oxygen. I hope we can start weaning them down soon - they can go to 0.9 on the nasal cannula then 0.8 etc.

I can't get enough of seeing them together so here are more pics:

Millie looks at Ruby

Ruby looks at Millie

Hands!

I had to throw this last one in here. This is Emmett beating on the doors of Phillip's Toy Mart. He was very angry that we left. I was going to buy something, but we had to abort mission at the counter and I had to carry him kicking and screaming out of the store.

Happy One Month Birthday!

So today really is the girls' one month birthday. I got to hold both of them for an hour each. I can't hold them at the same time because their beds are too far away from each other for all the tubing to reach. Millie weighed 2 lbs 12 oz last night (down an ounce but she probably had a blow out right before) and Ruby is still 2 lbs 7 oz.  Millie's oxygen saturation was dropping before I held her. She didn't look good to me (I think dusky is the word the nurses use when they start to lose their nice pink color from lack of oxygen). I had the nurse suction her and out came the biggest boogie that must have been blocking at least one side of her nose. She did much better after that. One of the girls' nurses told me that they have to suction them about once a shift, and it always makes a difference. On the low flow nasal cannula there is no moisture/humidity like there is in the high flow cannulas. The oxygen tends to really dry out their noses. I am learning a lot from the NICU nurses and starting to know what to look out for, but then I start to worry about what happens when I'm not there. The nurses are really amazing though, and we haven't had a single one we didn't like.

I feel constantly pulled in a million different directions, but this is only the beginning and a feeling that I am going to have to get used to with four children. I think I do a better job focusing on the girls when I am with them than I probably do with Jake and Emmett. That is the one good thing about the NICU - it's quiet and I am there to hold them and that's it. I had the nurse take a quick pick of me holding the girls today with my phone. I am so happy holding them and so happy to have these girls. I was missing them before I even knew they were going to be born. Does that make sense? It does to me. My family feels complete now.

Millie

Ruby

Diapers

I wanted you to see how tiny the girls' diapers are. The one on the right is Ruby's and the one on the left is Millie's. I think Ruby is about to outgrow the little one, but it's smaller than my I Phone.

4 Weeks

I told Scott I was taking cupcakes to the NICU nurses yesterday to celebrate the girls' one month birthday. Scott looked at me confused and said, "I thought they were born on the 9th?" Oh.....hmmm.....well, they are 4 weeks old, but I guess it would make more sense to celebrate their one month birthday than 4 weeks. Too late - I had already ordered the cupcakes.

As of today Millie weighs 2 lbs 13 oz!!!! Ruby weighs 2 lbs 7 oz!!! No real news to report other than that. They are still on low flow nasal cannulas with about 30% oxygen and getting caffeine. Millie is up to 24 ml of milk every 3 hours and Ruby is still on 20. The MD increased Millie today, but held off on Ruby because her stomach was a little distended. I talked to her nurse this afternoon and after 2 big blow outs she is no longer distended. I think we can all relate to that.

Jake is doing better. He went to school the last two days. He did vomit Thursday night which I think was a post seizure issue. How he made it all day at school and ate lunch and dinner I don't know. He was very pale when I picked him up from school, but after he vomited he looked and acted much better.

A few new pics......


It's funny how the girls already have little personalities. Ruby loves to kick her feet and arms out of her snuggly no matter how many times the nurses tuck her in.

Ruby

Millie opens her eyes more than Ruby. She looks adorable in this flower hat my friend Beth gave her!

Millie

Jake

I guess Jake was feeling left out of the blog, so he decided to get our attention. Not really, but Jake did have a seizure last night. For those of you new to "The Doolots" you can read about Jake's story at www.caringbridge.org/jakedoolittle. I don't have the energy to repeat it all here. I haven't updated caringbridge in a long time, so I am due for a Jake update, but it may have to come in bits and pieces. We have been battling seizures with Jake since right around the time Emmett was born (hmm....maybe there is something to sibling rivalry). It was hard to diagnose at first because Jake would vomit and be "out of it," but it never looked like a typical seizure. We have been through 4 different seizure medicines, but mostly changing them due to side effects. Since the end of last school year Jake has had several seizures that are more typical without the vomiting. He has partial seizures, so he will stare and tremor but he does not have "all over convulsions." His seizures tend to last quite awhile, and the rule of thumb is to give him rectal valium to stop the seizure if it lasts more than 5 minutes. This is more of a rule for a convulsive seizure, so we end up waiting 15 minutes or so usually before we give it. It's a gray area but watching your child have a seizure is frightening, and it's hard to know whether the brain is being further damaged in the process. We did give the diastat (rectal valium) last night. It works in 4-5 minutes and puts Jake to sleep immediately. This happened around 7 pm, and Jake had not had his night dose of his regular seizure medicine yet. I talked to his neurologist, and he said to wake Jake up in an hour or so to make sure he wasn't still seizing and to try and give the other medicine then. We were able to give it, and Jake went right back to sleep. We had him sleep on a blow up bed in our room to keep an eye on him. At 3:45 am this morning he was "Wide Awake Jake" and we've been up ever since. We usually give Jake muscle relaxers in the middle of the night to get him to sleep all night (I know that sounds terrible but Jake has a terrible sleeping history/pattern, and this is what we've finally figured out that works for all of us). We didn't want to give him any last night since he had a seizure and been given Valium. He seems perfectly fine now, so I guess I'll send him to school with instructions to call if he gets tired and needs to come home.

I think we'll probably change seizure medicines again since Jake is maxed out on the dose of his current one, but still having seizures. We have an appointment with the neurologist coming up, so we'll wait and change then. Jake's last seizure was about 3 weeks ago, so hopefully we can make it to the appointment before he has another one.

Jake early this morning drinking his milk and checking out Google Earth on the IPAD. 

Millie and Ruby are doing well. They have had less apnea spells since starting the caffeine back two days ago. Their weights were the same (not sure about last night's weight - I usually get the stats in the morning), but that's ok since they had several days of gaining.

Like Mother Like Daughters

It seems the girls just like their Mamma need their caffeine. They have been having more and more apnea spells where they forget to breathe and their oxygen and heart rates drop. Sometimes they will bring it back up on their own and other times their nurse has to give them some stimulation (rub their back) to remind them to breathe. They were on caffeine in the beginning, but they have been off it for awhile now. I guess going down to the 1 L flow on the nasal cannula is affecting them as well. Their oxygen rates have been varying from room air (21%) up to 40% depending on what is going on with them. Fortunately the caffeine can be given in their feeding tubes, so they don't have to get another IV. Their nurse told me that the caffeine was probably turned off too early, and that we shouldn't expect them to be responsible for their behavior yet! If only there was a Starbucks in the NICU, then we'd all be happy.

Millie weighed 2 lbs 9 oz last night. She has been gaining 2 oz/day the last few days which is crazy to me. I did kangaroo care with her today, and she does feel bigger. Ruby weighed 2 lbs 4 oz, so she is growing too! I'm so happy that they are doing well, and so thankful for the amazing NICU staff taking care of them. Our nurses have been great, and they really love our girls.

Emmett hit a milestone today too because he is 18 months old today. I took him for his first haircut to celebrate. I had mixed feelings about cutting off the curls, but he was getting the mullet look. The curls would appear after bath then slowly frizz out and look like a rat tail. We went to the same guy that cuts Jake's hair. Jerry has the patience of Job. I had grand plans to get pictures and videos, but Emmett wanted nothing to do with the haircut. We had brought a DVD player but that didn't work, and Emmett was slashing around, so I had to hold him. Jerry actually turned to me at one point and said he was afraid he was going to cut Emmett's ear off. I decided to switch game plans and asked Jerry for a sucker. Emmett has never had a sucker before, but boy did that make his day. We had a pretty uneventful haircut after that. Jerry was nice enough not to cut it too short and leave one curl for me. I also grabbed an extra sucker as walked out the door thinking that's going to come in handy again soon.

Emmett post hair cut with one curl left!

Jake starts school back tomorrow, and we are all exited about that. Routine is good for him, and he really loves school. Our only snafu is that the bus has been picking him up at Scott's Dad's house. I called today to get it changed, but it takes "3 to 5" days to process and let the bus drivers know. So I guess I will be driving him the next few days. We live close to the school, so it's not a big deal (for a couple of days at least!).  I promise to update more about Jake in a future blog.