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.