Monday June 30, 2008

Evie finally got her bath today – at 9pm. She had stuff in her hair and had a good day, so I figured she was due. She didn’t mind it too much and smelled much better afterward! Dad got to hold Maggie during her 8:30 pm feed – since he hasn’t been able to hold them much. She made some funny faces and made her head all red and then made some atrocious noises, quickly followed by smelliness. I’m not sure how many times we are going to think it as funny in the future – but she did it 3 times while Dad was holding her, so we thought it was pretty funny. However, we did Rock-Paper-Scissors for who changed it, and I lost. Maggie moved up her feeds to 33cc – she’s trying to catch up to her sister! The girls and I had our 2pm practice and…it definitely needs more practice. I’d pretty much given up on Maggie after 20 minutes or so, but after a little rest and remembering what she was supposed to be doing – she finally was actively participating. But she didn’t quite have the breathing part synchronized in the breathe, suck, swallow routine and so we had to stop her. But, I was happy as I figured I’d end up leaving frustrated. I have keep reminding myself in all of this – baby steps.

Sunday June 29, 2008

It was a fairly routine day for the girls, they pretty much just slept in their apartments. Mom did get to do another round of practice with each of the girls, but I think they were too sleepy to put much effort in. However, both girls increased their feedings again to 36cc and 32cc for Evie and Maggie, respectively. There were a few other changes in their medication, less of this, more of that. The only thing of significance with the meds is that Maggie’s hematocrit (red blood cell) count was a bit low; thus, they will give her Epogen shots again (I actually hadn’t realized they had stopped).

Four Pounds!

I can't believe I forgot to mention that Evie exceeded the 4 pound mark today. She is looking more and more like a "well baby" every week. And, the weight isn't just in her budda belly like Maggie's seems to be, Evie is growing all over. Evie's feet are even getting bigger (and stinky - did I mention that? - it's the pulsox and tape's fault)

Saturday June 28, 2008

Day 2 of Nursing…went much better than day one. Evie was great for her mom and figured some stuff out and gave a few good sucks. Dad tried to show me up by getting her to suck on her pacifier after she acted like she was done with me. Maggie did about the same as yesterday, she wasn’t quite as interested at first, but eventually came around and I claim that she did get some nutrition on of it! (I’m trying to keep things non-detailed for those males and ladies without children.) However, I am quite pleased with their “practicing” and we’ll keep working at it. It is nice to get to ease into it.

Evie continued to have a few spells today, but was working on keeping her oxygen blend lower. Maggie was a little out of her element today as she was on higher oxygen and not near as feisty as usual. Maybe she was working on that growing thing. However, since she had a pretty good day, she got to have a bath. (I’m not sure if that is a reward or not, Dad doesn’t think so.) She didn’t cry one bit during her bath and was quite cooperative. We are getting better at this and now are “in charge” and get to tell the nurse what things we usually do and what we need to get it done. So we got Maggie all cleaned and lotioned up and back in bed for a good night’s rest.

Friday June 27, 2008

I waited anxiously all day for Dr. Hiller to make the rounds and get to our girls; and of course, she had an incredibly busy day and didn’t make it to our girls until about 8pm. It is extremely unusual that it would be that late in the day, but since our girls are no longer the sickest babies in the NICU, we are the last on the list – which we are pretty ok with…except today. Today was supposed to be the day that the girls and I got to start practicing nursing. I say practicing because we didn’t really expect them to get much nutritional value out of it. So, I went over to the NICU a little bit before every feeding time (every 3 hours) to see if Dr. Hiller had written the order, but no luck until 8 pm. At 8pm though, I finally got to swaddle up Evie and see how she would do. She figured out the first part, but only got a little trial before she started to de-saturate. I blame the removal of her OG tube and getting stuff stuck in her throat – or maybe she just hadn’t figured out how to swallow yet. Thus, we put her back to bed and fed her the “normal” way. Evie had a good first shot at it, and when she gets her breathing a bit more efficient, she’ll be able to try a little bit longer.

We had a bit higher hopes for Maggie, because she has been showing more interest in sucking. When I was trying to change her diaper, she even started sucking on my knuckle – hungry girl. And we were right, Maggie was excited to get to try out something new and did very well. She stayed out for much longer and had intermittent periods of sucking and then fell asleep in Mom’s arms. Thus, Maggie’s first trial was very successful. We get to try nursing once a day with each of the girls – since it is quite a tiresome feat.

Maggie got a new bed today because her heater wasn’t working quite right. Of course this bed exchange was happening while there were all kinds of activity in the NICU and we had brought Colleen Meyer in to visit the girls. Otherwise, they’re still feeding and growing!

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Thursday June 26, 2008

I might be spoiled and crazy because I started the day with a round of water-skiing and wakeboarding at 9am and 50 degrees. This was necessary because Joe needed to get to work back in Missoula and I’m not sure when I’ll have another chance. Back in Missoula, the girls were about the same, Maggie’s hanging out squirming and sleeping and close to room air on her oxygen mix. Evie is still having issues with de-saturating often and having oxygen needs between 40%-60%. They’re both still growing though! I got to hold both of the girls this afternoon since Dad was working. I could really tell how much bigger Evie is, and also realized what it would be like to hold a normal sized baby (~7.5 lbs). Evie wasn’t being very good at sharing and expressed it by not being very efficient in her breathing. She wouldn’t necessarily stop breathing, but would breathe so shallowly that she wasn’t getting enough oxygen in her blood. Maggie was being funny because at first she just held her sister’s wrist and then tried to see if Evie wanted to suck on her fingers. Then Maggie decided that Evie didn’t smell very good (which she didn’t) and Maggie flipped her head back so she was looking at the ceiling instead of her sister. I eventually moved Maggie back up; however, she didn’t like being on her tummy upright, and wanted to lie on her back. Thus, Maggie wiggled down to the crook of my arm and on her back; then she was fine. The girls only snuggled for an hour and then just weren’t being good enough to stay out. I told them they are going to have to learn to share and be good girls or they wouldn’t get to play together.

Wednesday June 25, 2008

We said good morning to the girls and at 8am and got the typical update: they had a decent night and both gained some weight. So, we headed to Bozeman for appointments, to visit my wonderful coworkers at the MSU Foundation, check on the house, and then head out to visit Rich, Bev, and Christie at Ennis Lake. It wasn’t exactly Joe’s idea of a great 3rd Anniversary – but I at least got to get my first round of water skiing in for the summer! I think Grandpa Rich’s first comment when I went into early labor was, “well, she figured out a way to water ski this summer.” I really would have given up playing on the lake for the girls this summer, but I guess the girls figured giving up snowboarding for a season was enough.

The girls had their second eye exams today and Maggie’s eyes were relatively unchanged; however, Evie’s eyes have progress to Phase 2. This still does not require action, but we will continue to watch closely and if they progress further, she could be up for laser surgery. However, in talking to Dr. Hiller, if they were really worried about it, the ophthalmologist would be checking every 4-7 days instead of 7-10 days.

Tuesday June 24, 2008

“No orders today” is what Dr. Hiller told us this afternoon as we walked in to hold the girls. The girls are just hanging out and growing, which is what we like. We also like it when the girls are really good during kangaroo time – which they were. Maggie was cute because she was laying on me and I tried to turn her heard to face her Dad, but she would only move it straight to my sternum. Then she started sucking, so I turned her head and gave her her pacifier. She then continued to intermittently suck on that while she was getting fed. I’m so excited she is developing her baby instincts!

We’re headed to Bozeman on Wednesday, so don’t be alarmed if there is no posting for Wednesday until later on Thursday.

Monday June 23, 2008

Grandma and Grandpa Faulhaber visited today and both got to hold one of their granddaughters. Diana held Evie and Paul held Maggie – and the girls were on their best behavior. They were stunningly good as compared to their previous couple days. I guess they wanted Grandma and Grandpa F to keep taking care of their dog and visit them again. We had a good chat with Dr. Hiller and it made me feel better that the girls were just having a dip in their rollercoaster ride and that we should expect to have a few more ups and downs before the ride is over. Maggie is still our little lung rockstar – she has been back down to about room air for oxygen needs and they decreased her flow to 0.1 liters per minute. She did get put on some Phenalbarb that should help with her biliruben levels. They checked Maggie’s ductus again and it was possibly slightly smaller. There were no changes on Evie’s oxygen or meds, but ordered to just to keep growing out of her lung issues; although the lung x-rays this morning looked pretty good. The nurses have heard an intermittent murmur on Evie, but again just think it is a flow murmur due to growth. I asked Dr. Hiller about when, if at all, we could get moved to Bozeman. She answered what I had expected – it depends on their eyes. Most of the other issues can be monitored from Bozeman, but if there is any change in their eyes that would require laser surgery, it would need to be done in Missoula. So, I expect at least another 3 weeks in Missoula at a minimum. So, all is going well and we have some much anticipated events to look forward too.

Sunday June 22, 2008

We finally got to do kangaroo care this morning from about 9-11am. I think that the girls needed some cuddling to help them get over their little de-saturation phases. But, they continued to have an afternoon of keeping the nurses busy. The nurses are a bit concerned about this little phase the girls are going through and so Dr. Kaneta ordered blood tests today versus Monday. However, the blood tests all showed normal. So, there doesn’t seem to be anything in particular causing their apnea (other than prematurity as Dad would say). So, we’ll just stay the course and plan that they will grow out of it.

Saturday June 21, 2008

Yey, the girls finally got their baths today! Mom and Dad whisked them over to the sink and scrubbed them down – ok, not that roughly. They weren’t quite as dirty as last time, but it was nice to get them all cleaned up. Evie just kind of looked at us wondering what torture she was going through now, but Maggie was the one who cried. Dad learned to flip them over on their tummies so we could scrub their backs, but then tested out their breathing under water abilities. Luckily they had their nasal cannulas and didn’t notice after their little mouths and noses went under water for a second. It was mostly funny and something to give Dad a hard time about.

Maggie holding on for dear life & Evie hanging out

We didn’t get to hold them this evening, because they both had ended up having a finicky day with shallow breathing and desatting. They continued that into the night too until Maggie got her caffeine at 5am. Their food intake was increased by 2cc again – yikes those are getting to be full tummies. One of the nurses refers to it as having Thanksgiving dinner for every meal.

Friday June 20, 2008

The girls were expecting some holding or bathing today, but timing just didn’t work out right. But we visited them often and watched Maggie do her yoga. She has quite the moves – including planks and downward facing dog. Then she tucks herself in like she wasn’t doing anything – funny girl. Maggie is very active, I can’t image her doing all of that inside me – plus she gets the hiccups after almost every feeding. Evie on the other hand continues to sleep and sleep. Auntie Christie finally got to see Evie’s eyes today during 2pm care. Both girls were awake then and seemed to be expecting to come out to play, sorry sweethearts – not today.

Maggie did get a new apartment – they downgraded her a bit because she no longer needed the humidity and other special functions of the Giraffe Incubator. Evie will move tomorrow to her new apartment, so that other babies can use their fancy digs. Both girls increased their feedings by 2 cc – with Maggie slightly below Evie at 30 cc. Dad was supposed to get home for baths tonight, but his plane was 2 hours delayed, so we’ll try to get that done tomorrow. But he sure did miss those girls, and can see that they did continue to grow while he was off being employed in Redmond, WA.

Maggie Yoga

Thursday June 19, 2008

The girls were being so good today. Auntie Christie and I held Evie and Maggie, respectively. Maggie was awake and checking things out – Evie slept as usual. I did get to do the whole process of getting Maggie ready and out of her incubator for holding, and then put her back in and positioned. That makes me feel somewhat self-sufficient. Upon reviewing their weekly weight gain, Evie added 5.6 ounces (10.8%) and Maggie added 6 ounces (12.9%) over last week. The nurses can see a difference in their size when they come back after a few days of being off.

Wednesday June 18, 2008

The girls needed as much rest as they could get today because they were scheduled for their first eye exams. The eye exam includes dilation of the pupils, holding the eyelids open, and shining bright lights into them. I know that I totally despise that part of my annual eye exam. I was warned that the babies are not real fond of this process either, so I decided not to observe the first one. But the nurse said Evie didn’t mind so much, and Maggie cried the entire time – about as I expected.

Dr. Todd Murdock is the girls’ ophthalmologist and is checking for retinopathy of prematurity. He explained to me that the blood vessels start growing around the retina at about 20 weeks gestation, but do not finish until approximately their due date. When babies are born prematurely, the blood vessels don’t necessarily grow around the eye, but start growing into it. It is typical that all premature babies have some form of this, but the degree to which it grows it what is monitored. The girls’ diagnosis is Phase 1, which is the lowest out of 4 phases. They will likely get weekly eye exams until there are 36 weeks gestation to monitor the growth. If they growth is fast or excessive, laser surgery is a possibility.

So, we let the girls just rest today and didn’t take them out for holding. Plus, they have been being a bit more finicky again with their oxygen and asking for more Nurse attention by going out of their ranges and causing their alarms to beep. Maggie increased her feedings to 28cc of milk based on her size (and to get her to grow more). Evie is receiving more caffeine (9cc) because she has grown so much!

Mom and Auntie Christie worked on scrapbook pages today, as we are certainly not going to have time at the end of the summer.

Tuesday June 17, 2008

We put Joe on a plane this morning to commute to Redmond, WA for work for the next 4 days. He did see his girls at 5:45 am before heading to the airport and they were being good little girls. The girls did do another sleepover today from 2-5pm, but in Evie’s apartment this time. Maggie was very squirmy, but Evie just slept through the whole thing – I don’t think she moved at all. Aunt Christie arrived this afternoon, so she got to be the Joe stand in – just not as obnoxious. I thought since Maggie had been so good the last couple of days, she would be easier for Christie to handle; but apparently the girls must know it is not their parents because she acted up like Evie did for Grandma Bev on Sunday. We did figure out that her gavage tube (oral feeding tube) was coming out after she ate, so that might have been part of the problem. The girls have been taking turns de-saturating and making the nurses work, but Nurse Mary thinks that they did better when they were together because they reminded each other to breathe.

Nurse Barbara was back as Evie’s nurse tonight and played dress-up. Yes, Evie actually has clothes on tonight – and was on her side cuddled up fast asleep. Granted, Nurse Barbara said it took her a while to get Evie situated and happy because she didn’t like laying on her tummy tonight, which is strange. Both girls were tuckered out after their afternoon playtime and were fast asleep.

Monday June 16, 2008

Oh more fun stuff today – the girls got to do a sleepover! Evie went and stayed at Maggie’s apartment after kangaroo time today. They were so cute and didn’t even fight. Evie looked around and tried to figure out if Maggie’s pad was as nice as hers and Maggie was trying to be a good hostess. They started off on their backs looking at each other, and then after feeding time switched to their tummies. Needless to say, the girls were exhausted when they went back to their own homes when the night shift nurses came on. Then they got all swaddled in by their nurses for a good night’s sleep.

As far as technical stuff, Evie is still on her cannula. She isn’t as stable as with her CPAP, as expected, but is doing well enough that they haven’t had to put her back on it. Thus, after 24 hours of the ventilator/CPAP machine being off, they have to retest it – so they took the machine away and will only bring it back if necessary. But the nurses must be somewhat sure she will stay on it as they put Evie’s feeding tube down her nose. This keeps it out of the way for learning to suck and is slightly more durable than the mouth one. They checked Maggie’s ductus (PDA) again today and it looked to be small, which is smaller than moderate, so we are encouraged that she is growing out of it.

I like days when there is good stuff to talk about. Oh, and the girls’ car seats arrived today!

Sunday June 15, 2008

Happy 1st Father’s Day Joe! It was an eventful day as I had expected given the routine last couple of days. Maggie finally hit her 3 pounds!! The girls were again thoughtful and made cute Father’s Day cards for their Dad. Grandma Bev and Grandpa Rich drove up for the day to see the girls – the girls really do make a lot of progress in 3 weeks. So Grandma Bev got to hold Evie and Mom held Maggie while the Dads went and played a round of golf.

Evie decided to make a big leap today and move from her CPAP to a nasal cannula!! This is an exciting step for Evie because she has been such an oxygen hog and needing the air pressure (which had also kept her at nice regular breathing). But as we experienced with Maggie, we expect Evie to go back and forth between her CPAP and cannula as she gets used to lower pressure. Evie did well for a little bit – she had her eyes open for Grandma Bev and thought Grandma was funny (or at least she smiled at her jokes). But then she had a few spells where she forgot to breathe nicely, so we had to put her back to bed a little earlier than originally planned. It is hard work breathing on your own, and so we did notice that her breaths were faster and shallower, but it just takes practice and she’ll get the hand of it. We were happy to see that she was still “rockin the cannula” as Joe puts it at 9pm!

Of course, little Maggie was being an angel all afternoon; she was much calmer in contrast to her squirminess the last few days. She also had a change and got to move her cannula pressure from .3 cm2 to .2 cm2, which means she is getting closer to breathing without assistance. Maggie was so good that when the men visited after golfing, she got to go snuggle with Grandpa Rich. I think it was a good Father’s Day for all.

Saturday June 15, 2008

The girls had a quiet day of sleeping and growing. They increased their feedings to 30 cc and 26 cc for Evie and Maggie, respectively. Otherwise, there was nothing new going on – they must be resting up for Father’s Day excitement.

Friday June 13, 2008

Not many new moms and dads get the opportunity to go to the gym in the morning, take a nap with their kids in the afternoon, and stroll along the river at night. So, I guess in some ways we are like Hollywood parents who have really expensive nanny service! It does make for a nice summer Friday under the circumstances.

Evie and Dad had a nice nap and slept quite soundly. Little Maggie has turned into quite the squirmer. She moved around a lot during kangaroo time and even randomly cried a few times (very short, but crying nonetheless). Once I think she cried because it was pretty loud in the room, but the other ones seemed to be just because she woke up – hmm, guess that’s what babies do. Again, Maggie’s orders are to grow and Evie got to decrease her O2 pressure to 5. Her oxygen needs have been down a bit – if she would stop being such an oxygen hog, they might get to move her to a nasal cannula. But she has to get those lungs working better. They did have to replace her CPAP nose prongs with slightly wider ones so that the air doesn’t leak around them. I’m not a big fan because her poor little nose gets squished and irritated. The nurses say that it doesn’t do permanent damage, and I suppose I will believe them considering how many babies they deal with.

Thursday June 12, 2008

It is pretty quiet today with the normal routine of family naptime (kangaroo time) from 2-4 pm. Joe had to change 3 diapers before getting a little poopy one. And then he diapered poor Maggie’s arm in – but at least he caught his mistake before anyone else did.

Oh, and I'll try to update weights every Thursday. Maggie is closing in on her 3 pound mark - I can even see a difference in the size of her hands.

Wednesday June 11, 2008

Record for the day – Mom changed 3 poopy diapers (Dad – zero). The days are getting fairly routine for the girls and the only change was Evie’s increase in feedings to 25 cc. Mom and Dad did Maggie and Evie kangaroo time this afternoon and Dad, as usual, provided entertainment for the nurses. Joe tasted the MCT oil and he described it as eating movie theater popcorn – and the best stuff he’s tasted in the NICU yet.

Just to document so the girls know that their first summer – it snowed in Montana on June 11 and there was fresh snow sticking on the hills. If they were born on the east coast – it would be blazing hot; and if they were born in the Midwest, it would be flooding.

Tuesday June 10, 2008

Bath time! The girls got their first baths today. I have been trying to work it into the schedule for a few days now, but between Joe’s phone calls and the girls’ proper sleep time, it has been difficult. But we finally worked the baths in by doing Evie at 1pm and Maggie at 8pm. Dad of course, thought the girls should keep their “protective crusts” and didn’t need baths – but the nurses thought he should be a participant in the first baths anyhow. We did the bath in a pink tub close to her bed in case we needed to use the CPAP, but Evie did really well blow-by. We started with Dad washing her hair first, and then we dipped her into the tub for the rest of it. She actually kind of enjoyed it and didn’t cry at all. But my oh my was she dirty – she had a bunch of tape and then some drool and gook behind her ears. So, we did pretty well for her first bath – in the clean department. Then we dried her off and I kangarood her to warm her up. It was quite nice.

We waited until 8pm to do Maggie’s bath because Dad had conference calls scheduled (which subsequently got cancelled, but not with enough notice to do both girls). Maggie wasn’t quite as delighted with the bath, but she did pretty well. We finally took the pink bows out of her hair, they were stuck really well. I’ll have to make some new bows and get the magic sticky stuff (K-Y, apparently dries and sticks really well). When we were done, she got to snuggle up and sleep with Dad – and they both slept because it was after 9pm.

As far as their care, Maggie’s orders were “No orders today”. Evie added ½ cc of MCT oil instead of increasing her food. They also increased Evie’s pressure on her CPAP to see if we could get her oxygen needs down. Otherwise, we continue to feed and grow.

Monday June 9, 2008

Carrie is tired after holding our girls tonight, so I get to tell about diapers. Maggie pooped up three in a row for me - the first one (looked like a hot air balloon inside if it were a Rorschach test), a second she tagged while I was changing the first (looked like an ellipsis in there...), and a third while I was holding her that looked like an angry clown. All of them smelled the same not good, though. I didn't get to see Evie's diaper tonight, but I think hers were exciting earlier today.

Maggie's trying to be quite the exerciser - she squirms around her isolette quite a bit. She's been found 90 degrees off where she was supposed to be and schooched down in the corner once, too. I'm worried she'll start knotting blankets and hoarding syringes to aid her escape. Evie's calmer, she's focusing on growing instead of elicit freedom, but the problem with that it's tougher to move when you're bigger - chubby babies have a lower strength to weight ratio, I think.

It's Monday, which also means test day - blood tests, and both an echocardiogram and head scan for Maggie. Blood test results mean Evie's probably going to get one last (hopefully) transfusion in a day or so, and Maggie's scans were unchanged -she had a single class I intraventricular hemorrhage probably a month ago that's healing, and still has a moderate patent ductus arteriosus with an atrioventricular septal defect. So no surprises, we're still just feeding and growing.

I'll let Carrie "moderate" this posting when she sees it. Joe

Sunday June 8, 2008

Apparently Maggie is going to be our little escape artist. We already know that she squirms out of her nose prongs (both CPAP and cannula), but today she squirmed from her normal horizontal position to a diagonal across the bed. Nurse Farrah also told us that at one point last night Maggie had squirmed all the way down to the bottom of her bed so her feet and butt were against the corner – goofy girl. Joe finally got his opportunity to hold both of the girls – even kangaroo style. (It might have been because Mom had coffee this afternoon and could only hold Maggie for an hour and did a hand off.) The girls looked like they enjoyed it along with their Dad. The girls were measured last night and Evie was 15 inches long and Maggie measured 14 ¾ inches long – 2 inches in 5 weeks isn’t bad!

My project today was to finally finished my research and order the girls’ car seats and a stroller so that when the time finally comes – we have the equipment to take them home! The crib mattresses and bedding are next – and then I figured we’ll have the basic equipment for these two. Do you think I’ve hit the nesting phase??

Saturday June 7, 2008

The girls had an uneventful day and there were no changes in their orders – which sticks to the current plan of feed and grow. Maggie did stay on her nasal cannula from 11pm Friday night to 7:30 pm Saturday night – that was great! She can just keep adding a little more time each opportunity. Maggie’s blood test this morning did show that the transfusion was very successful and increased her hematocrit (percentage of blood volume occupied by red blood cells) from 32 to 46. Otherwise, we just showed off their cute pictures to the nurses and receptionist.

Friday June 6, 2008

Evie passed 3 lbs today!! Go girl! The girls were doing well this morning and both gained 20+ grams. We participated in morning care and then sent Joe to work and me to the gym. We held the girls early this morning – at 11 a.m. so that we could head to Bozeman after noon. Evie was a little angel with Mom and did wonderful on her blow-by oxygen. She was under my shirt and looked kinda funny with just this little head sticking out of my shirt. Joe held Maggie who just went back on her nasal cannula. They both had their food and were pretty wakeful for a while. However, Maggie had a bad spell, which the nurse blamed on a bit of spit-up. But she had to get put back in her bed and given a few breaths with the oxygen bag. It scared mom because she was pretty purple and I couldn’t see the monitor to know that she wasn’t really bad. But, she bounced back quickly afterward and was then doing just fine. We called the nurses in the afternoon and Maggie was going to start another blood transfusion – about 25cc. As Joe puts it, she needed a top off. In the evening the girls were continuing to do quite well, so we slept well in our own bed!

6/5/08 Part II

The rest of Thursday was rather uneventful. Maggie went back on her CPAP around 11 am. Mom and Dad had kangaroo time at 5pm and Maggie got put back on her cannula for her 6 hour interval. The cannula is under 2 conditions – Maggie keeps breathing so that she doesn’t desaturate where she can’t bring herself back up and her breaths are less than 100 per minute. She has a bit of an issue with breathing too quickly, which will probably wear her out. But she gets to practice every 6 hours. Evie got to do oxygen flow by during her kangaroo and handled it very nicely with Dad. At their weigh in this morning – Evie is 2 pounds 15.8 ounces (6 grams away from 3 lbs) and Maggie is 2 pounds 9.2 ounces.

Thursday June 5, 2008

The report from last night… I did get to hold both girls at the same time, it was so wonderful. Maggie was so good, she was wrapped in the pink blanket and got to come out first. We took off her CPAP to give her nose a rest and just used blow by oxygen – but she didn’t really need that either. The oxygen mostly sat away from her and we just had to wave it in front of her face twice. She was awake and looking around for the first part, and then finally went to sleep. I put my hand above her head to block some of the light, and she looked up at my hand and I think the back of my rings caught her attention, because she kept looking at them. Then we got Evie out, who was wrapped in the blue stripped blanket. I think we woke her from a deep sleep, because she wasn’t quite ready to breathe on her own – and she had just eaten. She turned a little purple right as we took her out and then reminded her what she was supposed to be doing, so she got to come out and take pictures. While she was out she opened her eyes and smiled with her sister. Then she went a little blue again and we decided we’d better put her back on her CPAP. Then Evie fell right back to sleep. I held them for about an hour and a half and Dad did stop working and come over to see us. Joe says the girls are like onions – they make his eyes water when he is around them.

At this point, you should definitely go look at the new pictures in the photo gallery – start at the bottom of page one. (There are 2 pictures on page 2 also)

The difficult part of the night was putting them back because Maggie was not happy about having to get her CPAP back on. She thought she’d proven herself, so she didn’t have to have it and fussed. But she might have had a point because the prongs got her and made her nose bleed, poor thing. But it quickly clotted and she was sleeping when we left. However, she might have found a sneaky way to get back on the nasal cannula. The nurse asked Dr. Hiller if they could try her on nasal cannula again – which has smaller nose prongs and much lower pressure – to help her little nose. So, she started on that at 2:30 am and was great when we checked her at 8:30 am this morning. I’m worried she’ll get a bit tired from working on breathing, but the nurses will watch her. She’ll probably go back and forth between the cannula and CPAP, but any little break helps.

Wednesday June 4, 2008

Hmmm, it has been a pretty quiet day today. We haven’t spent a lot of time with the girls – but I’m headed over this evening to hold them both – at the same time I hope. (Joe has work to do) They have been pretty much sleeping – and being finicky on their oxygen needs. The girls started their Epogen (brand name for erythropoietin) shots to help red blood cells to grow. This is necessary because they don’t have much bone marrow to produce their own blood and hopefully this will keep them from needing as many blood transfusions. They will get the shots Monday, Wednesday, and Friday for quite a while. The girls did have visitors today – Joan and Tom Schafer stopped by since they were “in the area” and got to see our little girls. But since the girls can’t really come out and play – we just stood and talked about them. It was quite nice to see and chat with the Schafers since we haven’t been in the same town for 6 weeks.

Well, I’ll report on holding the girls tomorrow – but now I’m headed out the door!

Tuesday June 3, 2008

The girls had a much more peaceful night last night – it must have been because their parents held them before settling down for the night. When talking with the nurse this morning, she commented that they are in the feeder-grower stage. There are not any major things we are fixing at the moment – just working on those lungs and growing, which is a pretty good place to be.

Joe enjoyed his kangaroo time because he got spit up on twice and had to smell a dirty diaper the entire time. Despite Joe changing her diaper before holding, Maggie wasn’t quite done with her job – and with the fortifier it is pretty stinky. Evie was a doll for her mother of course!

Grandma Bev wanted new pictures, so here are some:

Evie

Maggie

Monday June 2, 2008

Sorry for the lateness of my posting. We switched up our schedule yesterday and held the girls from 8 -10:30 pm, so by the time we got back to the room I was too tired to blog.

So, the only big change was that Evie got her PICC line out – which means she doesn’t have any IV fluids and is relying on oral feedings. I was there when the nurses took it out, and it was anticlimactic, which I suppose is good. But, Joe has another medical thingamajig to put in his collection. Maggie kept her nurse on her toes last night as she had a few spells and had to get bagged. She has an issue where she doesn’t bounce back very quickly and the nurses have to breathe for her a few times. Dr. Hiller must have decided she wasn’t quite ready for the reduced pressure, so she went back up to 4. That means that Maggie is probably not quite ready for the cannula – although she still hates the CPAP and manages to continually push them out of her nose. Evie doesn’t seem to mind the CPAP too much – she’s just happy to have the ET tube out of her throat! Oh, and I figured out the additive that Maggie is getting to increase her calories, it is MCT oil (medium chain triglycerides). These are easily absorbed lipids (Joe terms), and they do seem to be helping as she is gaining weight.

Sunday June 1, 2008

On the first day of June, I want to take this opportunity to say Thank you to all who have been praying for our girls and walking with us on this journey. It fills my heart to know that there are so many people out there caring for our little baby girls and it has helped me remember that we are not in this alone. So thank you so much for being with us and I look forward to the day when you all will get to meet our ‘not so little’ girls.

The girls had a day of feeding and growing. They are still increasing their feedings and both gained over 40 grams today. Maggie is still on her CPAP, but went down on her pressure to 3. Both girls still have little spells where they stop breathing, but it is typical preemie behavior as their brains are just not quite mature enough. Mom and Dad spent a couple hours in the NICU holding the girls, reading stories, and chatting with the nurses. I think we have a couple positive steps to look forward to tomorrow, but will report when we get there. This evening the girls looked all comfy as they were swaddled in for a good night’s sleep.