Thursday July 31, 2008

Dr. Hiller said we are “very close” to going home. Thus, we started a new plan. The girls are going to feed orally for all feedings – about half “home cooked” and the other half “casual dining” or “take n bake” (bottle feeding). Or at least they will try to do all orally – if it doesn’t work, we will revert to gavage. But, we are trying to limit the gavage as much as possible. Maggie has done well on her oral feedings all day. However, poor Evie is just so sleepy she can’t wake up enough to eat. I’m pretty sure she wants to be a baby that eats for an hour and then sleeps for 4 or more, but unfortunately she doesn’t have that option yet. Evie also has an issue where she is surprised by sucking and getting milk that she vaguls and drops her heart rate and saturation. She does that about once per feeding and we have to get the oxygen mask out. So, Evie is going to take a bit more work – but hopefully it was just an off day and tomorrow will be better.

Evie is still on her supplemental oxygen and will more than likely go home on oxygen. She did have a few hours today where she was off of it, but then she woke up and needed up to 40% blend again. Only time will tell, but hopefully Evie will keep growing out of her lung issues and will only need the oxygen for a month or two. Actually, Maggie will likely go home on oxygen too since we live at a higher elevation – but in her case it is better to have it and not need it than need it and not have it.

So, this is good news for today – we have a plan to work toward and it feels like we are finally on the downhill slope.

Tonight we send a few prayers for easy diagnosis, quick resolution and healing for my cousin once removed Blake Levery – son of Miea (Brewington) and Brad Levery. He is one year old and in the ICU down in Texas.

Wednesday July 30, 2008

Finally we have some better news today. Both girls had their eyes checked again by Dr. Sippy and they both are looking good. He said that the spots that Dr. Murdock had seen last Friday in Evie’s eyes have cleared up and were probably looking poor because they were not totally healed from surgery; thus why they wait 2 weeks to do the follow up exam. Maggie has a slightly similar story as Evie and has a few spots that are still healing, but her 2 weeks is on Friday. Thus, he thinks the surgery did what it was supposed to and we most likely will not need any supplemental procedures. However, he wants to look at them again in a week.

On the feeding side, we came up with a plan to try to phase out the NG tubes. We are going to nurse/bottle feed 5-6 times a day but limit the feeding time to 40 minutes. Thus, we’re hoping to make some progress.

Patience

Hi all, Joe guest blogging again -

This part of our girls' lives is pretty anxious and boring all at the same time. They're almost ready to go home, but just can't quite get there. We have to be able to feed them normally - I don't understand why I can't be trusted to gavage the girls - but there's some dumb policy or some such.

So we're still practicing feeding. I show the girls how to burp, I'm pretty good at it, and they're learning. We chatted with the nurses about wacky names tonight, since I think "Meconium" and "Lactation" are such pretty names. It turns out there is more than one baby named Meconium out there, and a bunch named "Abcde", too. This is really somewhere Dads add value - we prevent giving children names that are too easy to rhyme on the playground.

Speaking of lactation, we finally got ahold of the lactation specialist today, her name is actually Julie. She had lots of suggestions and minor tweaks, but the bottom line she gave is one Mom doesn't want to hear - our girls are premature and barely full term even now. Crud, if they were born now they'd actually be much, much worse at feeding. So they're doing great, in reality, though that's not getting us released this week.

I fed Carrie Dairy Queen, and she's still pretty crabby - and if she's this bad this week, it's probably going to double every week going forward. So let's hope the little ones rally, pass the eyeball tests, and we head back to Bozeman soon!

Oh, and Lanugo is a very pretty name, also.

Monday July 28, 2008

It’s all about the food…and even though they have Wilcox/Hageman genes…we’re not there yet. Evie earned the prize for best nurser today – but that didn’t happen until about 9pm tonight. To try to get the girls off of gavage feedings, we introduced the bottle. However, to start they only get to bottle feed AFTER they practice with mom. So, Dad finally got to participate in feeding the girls (other than holding the syringe of course). I don’t think Maggie has figured out when she is full yet – because she ate the whole bottle AFTER she had nursed with mom. She seemed to be fine and still wanting to suck on her pacifier so maybe she is just trying to catch up to her sister. Evie does pretty well on the bottle feeding too. Thus, hopefully this will help them get used to eating all of their meals instead of getting fast food – which is a go home requirement.

Sunday July 27, 2008

Maggie passed the 5 pound mark today – and this one is staying because she’s not pumped up with IV fluid like the last time. This evening I thought I could see the growth in Maggie’s face. The girls were happy to see their parents at 2pm and both girls nursed well. Then at 5pm, their gavage feeds (fast food) were increased to 53cc and 48cc for Evie and Maggie respectively, so they weren’t quite as excited about their 8pm feeding. But then, when we put them back to bed, they both decided that they were hungry and started rooting on their blankets. It is quite funny to watch them turn their heads into the blanket and start bobbing around; so we topped them off so hopefully they will go to sleep.

Saturday July 26, 2008

The girls had a nice quiet day. They did start it with both having a very good practice with mom - yey Evie! Then they just slept and grew. Since they were awake ar 2pm (thinking mom would come feed them), they got their hearing screens and both passed.
Oh, and apparently they were dressing up for Christmas in July last night and have cute matching red sleepers. Evie (L - with oxygen) and Maggie (R)

Friday July 25, 2008

There really wasn’t much going on today. Maggie nursed 3 times today and Evie practiced 3 times. Evie was awake for the first 2 and tried really hard, but I think needs to work on her form and efficiency. But the girls are so cute these days. Maggie is just too funny and wants to suck all the time. And when she is held upright – she bobs her head around trying to find something to latch onto. The girls both gained huge amounts today – like 100 grams for Evie and 80 for Maggie. Thus, the growing plan yesterday worked!

Mom and Dad are making their 24 hour trip to Bozeman and Ennis tomorrow, so there might not be a post until Sunday.

Thursday July 24, 2008

Today was Nurse Appreciation Day, as determined by me...as I decided the nurses needed to be treated to DQ sundaes for the wonderful care that they give our girls. But the other interesting nurse news is that we finally had a male nurse in the NICU. Out of our 11 weeks there, this is a first - and Joe was absolutely excited to have some additional testosterone around.

The girls are finally back to where they were before the surgery, Maggie is being herself and Evie sleeps all the time. We started trying the supplemental nursing system (SNS) - which essentally increases the flow while sucking because of a little tube that hangs from a plastic bottle around my neck. The first go wasn't so successful because the girls were totally worn out this morning at 2am. And I think Maggie is smart enough to figure out when she doesn't have to work very hard to get fed. However, we just did normal practice at 2pm and Maggie did awesome!! She ate at least 25cc in about 10 min - it's the best she has ever done. Evie still needs a lot of practice and to be more awake - she is so sleepy! Unfortunately, the girls have not been gaining much weight since we went to 4 nursings a day, so we cut back to 3 and are trying to make sure we totally fill them up. However, that means I get more sleep at night.

Wednesday July 23 2008

girls are good. they got to try cup feeding out of a medicine cup. it wasn't very successful, but Maggie did ok. we were trying to determine how hungry they were after nursing. I don't think either of them have enough stamina to get full feeding by sucking and swallowing, thus we are trying different methods. both girls were quite the poopers yesterday, so that is good. Mmggie was much calmer today also. evie had her follow-up eye exam, and there are still some problem areas. we'll need to talk to the dr. tomorrow to figure out a plan. but dr. sippy will have to come reasses in a couple days because dr. murdock is out of town.

this is mobile blogged because my computer would not restart this morning and joe failed to blog last night because I had to go to bed.

Tuesday July 22, 2008

Maggie has always been the whiny one, but today she is cranky and crying despite our efforts to calm her down. She wasn’t too mad about her bath at 8pm (boy was she smelly), but during her awake time she can’t seem to calm down. It started at 2am this morning when I was over at the NICU to feed Evie (yes, my first middle of the night feeding), and then she was bad this afternoon and this evening at 8pm. I’m hoping it’s just because she needs a bowel movement. Maggie started practice time again at 2pm this afternoon – and she ate and ate and ate (and cried). Evie did well at all of her feedings except the 2:30 pm one – not sure why. The Nurses think it’s the 36 week stupids: when the babies just are not always on top of it and have good days and not so good days. But gee is it frustrating!

Girls are better!

Just a little update to let you know Maggie is much better and back in bed with her sister. She hasn't had any spells since yesterday afternoon and the Nurse said her monitor was quiet all night! She is also off of her oxygen again.

Evie says "Whoa, who's that?"

Monday July 21, 2008

Maggie is better today, but still not 100%. She had 2 racemic epinephrin treatments this morning, but did not have any further brady spells until about 7pm. Her IV fluid was discontinued and her feeds went up to 40cc. She is still on her warming bed, but is doing much better. The nurse is going to bundle her up and see how she does and then hopefully she’ll go back in with her sister tomorrow. Maggie was 5 lbs today, but that includes an IV and a lot of excess fluid, so I expect her to lose weight for the next couple days.

The girls did have a visitor today, Jenn Massey was in town so she was able to stop by and visit. Evie was sleeping and Maggie was a bit upset and crying. But it was very fun to show off my girls – despite the leads and tubes. Evie had a normal day and is still working on her feeding.

Sunday July 20, 2008

I wish the 48 hour time period had worked as well on Maggie, but unfortunately we didn’t have pushy nurses or doctors on duty. Maggie wasn’t much better this morning; she was still wheezing and working really hard at breathing. She had racemic epinephrine treatments every 2 hours during the night and until 11am, but it didn’t do much good. Usually the treatment will cause her heart rate to increase (adrenaline), but she got used to it and didn’t do much in her later treatments. So, Nurse BJ pushed to start Maggie on Decadron to get the swelling down. Maggie was also very hungry, much like her sister on day 2, so she got up to 30cc of milk. Then Maggie started having bradycardia spells – drop in her heart rate below 100 bpm. They did not seem to be caused by anything in particular, but those can be scary. So, she got a half loading dose (think ½ of a Coke) of caffeine and then will get some more in 24 hours. These things started to help and Maggie sounded much better this evening, but was pale and still not back in bed with sis. I’m really bummed they didn’t give Maggie the same attention and treatment as Evie, because I think she should have been much improved 48 hours after surgery. Evie started the Decadron the day after surgery, and since Maggie is 1 day behind on that, I think it is going to take her 72 hours to be better.

Evie, on the other hand, is doing great and had 3 full “home cooked meals” without supplementing with fast food today. I’m hoping we’ll add in that 4th feeding tomorrow – even though it will require me to get up and go to the hospital at 2:30 am – ugh, but it’ll be worth it. Evie again crossed the 5 lb mark. She had lost weight after surgery, but is gaining again!

Saturday July 19, 2008

Surgery still stinks. Maggie has had 3 epinephrin racemic treatments and will probably have another one or more tonight. She sounds like Darth Vader, which isn’t cool for a little 5 lb baby. It upset Dad tonight, which is pretty much a role reversal from where I was on Tuesday. I am hopeful that she has a very restful night and her poor trachea heels and the swelling subsides. Her lungs are really good and she didn’t need her cannula for a significant portion of the day, but it is so much work to get that air through her trachea that she needs a little help.

Evie just fed and grew, although she still needs a lot of practice on the feeding part. She wasn’t being a very active participant during practice. I did give the girls their first manicures today. Their finger nails have been scratching me, so I brought a file and smoothed them out. Actually, Maggie only got one hand done since she still has her IV.

Extubation

Maggie got her breathing tube out around 12:30pm. Mom thinks she could have had it out about 8 hours after the surgery, but since that was in the middle of the night - they wouldn't do it until they had Dr. orders. However, she is doing much better after ventilation than her sister - so we are hopeful this will be a much easier day. We are going to see the girls now, type more tonight.

Friday July 18, 2008

It was surgery day again; however, most of the day was normal. Both girls nursed this morning and did pretty well. Evie is back on her nasal cannula as of about 6am this morning. I had a feeling that she might be headed there last night as she had a few little spells when we were there. Plus, the Decadron and caffeine were wearing off. Thus, this was not unexpected, especially since she was still on oxygen before her surgery. Evie did however get to have a spontaneous bath this afternoon before she got to eat – Mom did it all by herself with no help! Plus, Evie did it without supplemental oxygen also! And she smells much better (the bath was Nurse prompted due to her smelliness!).

Maggie moved to the procedure room to be intubated and start her medications at 2pm. The procedure started 3:45 pm, and was complete at 5:45 pm. Dr. Murdock performed the procedure this time and Dr. Sippy showed up a little after 5pm to assist. They said that the procedure went well. Maggie needed to have multiple doses of medication as she was starting to move a bit and because the procedure went longer. However, Maggie seems to be handling the ventilator much better than Evie did. Her blood gas levels (CO2, O2, pH) were very good right after intubation and she was using only 21% oxygen. She also did not require suction to clear gunk out of her lungs – that is a good sign as Evie had several suctions within the first couple hours. After 8pm, she was fairly awake and was taking a good portion of the breaths on her own. However, since the Dr. isn’t usually around at night (unless necessary), they probably will not extubate her until tomorrow morning. I’m anxious to get that tube out of her throat as soon as possible so it will cause minimal irritation. I’m hopeful that Maggie’s recovery might be a little less strenuous since her lungs are in better condition.

Thursday July 17, 2008

The girls were great today – except they tended to stay awake longer than I thought they should. But part of that was probably because Evie was hungry and jealous that her sister got to nurse. However, Evie got her full feding (45 cc) at 5pm and then wasn’t really interested in practice at 8pm. Janet and Pat Mullaney came to visit the girls – they arrived just after the girls finally went to sleep in the afternoon. It was wonderful that they were both off their oxygen and Evie got her IV out at 4pm. They are getting fewer and fewer attachments all the time! I had the night nurse put the girls in their own clothes last night, cute little sleepers, because I think they might outgrow the preemie clothes about the time they get to go home.

Now the bad news, Maggie had her eyes checked this morning and hers are in the same condition as Evie’s were. Thus, she’s scheduled for eye surgery Friday at 3:30 pm. Her lungs are in a little better condition and so hopefully can take the time on the ventilator a little better – but we’ll see. I guess I have a better expectation for the surgery and recovery so that it won’t be so hard the second time. Plus, I know that she will need 2 days to recover and then hopefully will be in tiptop shape again.

Wednesday July 16, 2008

Today is a much better day. They were right about the 48 hours – it gives time for the harsh medication to wear off and the body to recover. Evie was awake this morning and not upset – so Mom and Dad got to hold her. She did have some bradycardia spells (slowed heartrate) last night with or without apnea, and she still seemed rather pale this morning. But it’s probably just from the medication. We talked to the Doctor and her lungs look much better today, but we’ll keep her cannula pressure up. She did get a loading dose of caffeine yesterday when she was extubated to help with the breathing – but that with the Epo had her wired yesterday. Dad also held Evie while Mom fed Maggie for the 2nd time at 2pm. Then, we put Evie into bed with Maggie – reunited (can’t get the song out of my head).

It was bath day for Maggie. The strangest part is that it was so easy! We didn’t have to have an oxygen tank or anything – we just disconnected her leads and carried her off to the sink. I’m pretty sure we didn’t have any nurse assistance – I even put on the new leads and turned on the monitor, we are such self-sufficient parents! Then I wasn’t sure she would eat again after her bath, but she did. Dad didn’t think she needed any supplemental fast food, so we just put her back to bed. Nurse Martha said she’d watch her and see if she gets hungry before her 5pm feeding. So, if Maggie loses weight tonight it’s Dad’s fault.

Clean Maggie!

At the 5 pm checkup we had amazing news – Evie didn’t need supplemental oxygen. Nurse Martha started weaning her down because she was satting high – and she kept lowering the pressure from .5 all the way to 0. Amazing – as Evie was still on oxygen before the surgery – Decadron and caffeine must do fabulous stuff. Evie was still off of it at 9pm, although she did need a little boost during her care. I expect that she’ll need a little bit once the high wears off, but we’ll take what we can get! Oh, and Maggie didn’t take any fast food before her 5pm feeding – so we must be getting pretty good at practice.

Tuesday July 15, 2008

Warning: Mom's had a rough day - so you might want to skip this one and read tomorrow.

Surgery sucks. The surgical procedure isn’t that bad, but the recovery is the worst. The ventilator really messed up Evie’s lungs. Her blood gases haven’t been very good and her x-ray showed that her lungs are all cloudy…something we’ve worked 10 weeks to improve shoots backward in 1 day. She finally got ex-tubated at 12:30 pm and went onto the nasal cannula with very high pressures and pretty high oxygen. Of course, having a tube down your throat is pretty traumatic and causes swelling in the vocal chords and elsewhere and thus the poor girl can’t cry and is really scratchy when she tries to breathe. She’s not a happy camper either as she was so hungry at 2pm that she was sucking ferociously on her pacifier when she wasn’t squirming her head around. She was given Epinephrine blown into her face to help the swelling in her throat and probably some other drugs I don’t know about. Since her lungs were so bad, they started her on the Decadron steroid again. She will get 4 doses over a day (once every 6 hours). They did a culture on her ET tube and found white blood cells and something else indicating possible infection. She is still on her heating table and the nurses are just trying to get her to sleep so that her body can heal. It breaks my heart to see her like that, but they tell me to give her at least 48 hours to recover. And I have to keep reminding myself that it is better than being blind.

Maggie is being Maggie. Silly girl who wakes up before it is time to eat and thinks she is so hungry – but doesn’t take enough to fill her tummy before she gets bored or falls asleep.

Monday July 14, 2008

Let’s start with great news…Evie reached 5 pounds today. (the nurses weight them during the night shift.) But then she went NPO (non per os – no food) at 5:30 am and only got IV fluids after 8am. Mom got to carry Evie back to the procedure room around 11am this morning – then I held her as long as I could before they needed to start the eye drops and intubation. I put her on a warming table – like what the girls were on for the first week of life, and that is what the procedure was done on and will be her bed until she goes back with her sister. The day shift was easy as Joe, Carol Raymond, and I just hung around Evie and chatted with the Nurse. Joe came up with health issues that are caused by some of the new NICU rules. For instance, touching your cell phone will give your baby stink foot. Or, staying past 6pm will cause your smelly ear jam (like toe jam, but behind the ear). Evie even got her favorite Nurse Barbara back for the night shift. We told her that she didn’t have to go for surgery to get her back, she could have just asked. But “Auntie Barbs” was taking good care of her during the night to make sure she was comfortable. Unfortunately, they were not going to ex-tubate her until the morning sometime.

Maggie had a very quiet day, we practiced at 8am and 8pm and did ok. She is pretty small in that huge steel crib. But we snuggled her next to the puppies J. Carol Raymond got to hold her for her feeding in the afternoon. Holding babies is a new thing for Carol since she only has big girls and no babies.

Joe's Technical Eye Details...

Carrie wants me to update on what actually happened, because I got to watch the end of the procedure. I've been told that some people go all fainty when hearing this stuff, so if you're sqeamish, please head over to the photo gallery, it's turbo cute.

The key of the operation is a low power red laser (around 600 nm wavelength), which the Dr. sends through a magnifying glass (which has no effect on the coherent light of the laser) to the retina. The magnifying glass is so the Doc can see his aim point - he's got a "laser" pointer like on a laser level that shows his target. The laser fires pulses when a foot pedal is pressed, with 400 milliwatts of power with 200 millisecond duration every 300 ms. This energy is absorbed in the back of the eye and burns blood vessels to slow their growth.

But the laser can only be focused on a fixed target - so Evie had to be paralyzed. As in - breathing won't work paralyzed. So we first gave her an IV painkiller, then put in a breathing tube hooked to a ventilator (Dr. Hiller was very efficient at that part), and then gave the paralytic agent.

The Doc aims the laser with his head, much like a shark- or penguin- mounted laser beam in my evil supervillian schemes. Turns out it's highly uncomfortable to aim the head laser through the magnifying glass into a retina for 45 minutes. Dr. Sippy did it a 1600 some times on Evie's right eye, fewer on her left. His laser counts pulses for him. Added to this, you have to get all around the edges of the retina, which means dilating the pupil with eye drops and pushing the eye around with a probe. Highly irritating for poor Evie's eyes - the drops and the probing is probably the worst part.

But it's pretty straightforward, and Dr. Sippy knew his stuff - I asked him about close work affecting nearsighedness, which our girls probably face, and he had good knowledge of current research.

But as those of you who have had surgery know, coming back off anesthesia stinks, big time. And poor Evie didn't like it much - she's normally pretty mellow, but a little Maggie-style fury would be nice to get her back off the ventilator - her chest doesn't sound nice when the vent is forcing air. So we're waiting now for her to get back to her cannulas as soon as she can.

Eye surgery complete

Evie started laser eye surgery about 1:15 pm and finished right around 2:30 pm. The Dr. did fine and Evie was recovering all afternoon. She's "riding the vent" as Joe puts it, because she is not taking all of the breaths on her own - she is letting the ventilator do it. But, we'll let her do that for a little while and then we'll make her breathe on her own again. Maggie misses her...

Sunday July 13, 2008

Today was uneventful. Evie practiced twice and Maggie once, because we didn't get back from Bozeman until 2:30 pm. But both girls did well (still not perfect). Otherwise they are just making preparations for Evie's eye procedure tomorrow.

Saturday July 12, 2008

Maggie is still off of her oxygen! And she’s doing fantastic! I am very excited about that.
On the other hand, Evie had her eyes checked today and it wasn’t a surprise when the doctor said that it would be best to treat her retinopathy now. Her left eye is “pre-threshold” which means that the blood vessels are progressing where they should not be. Her right eye isn’t quite as bad, but is moving in that direction and it doesn’t make sense to wait a week for it to get bad. So, she is scheduled for laser surgery on Monday around noon. I think the hardest part for me is that she will have to be re-intubated (oxygen tube down her throat) and given an IV for nutrients and anesthesia. So, that pushes us back a bit on heading to Bozeman by at least 2 weeks.

Friday July 11, 2008

Baby steps make up a lot of distance some days. The girls are being slowly weaned off of most of their additives: Maggie discontinued her caffeine today and Evie’s oxygen flow was decreased to .1. Evie did protest a bit as she had a few spells through the day where she desaturated – probably because of intermittent breathing. However, Maggie was sitting at 21% oxygen mix all day, until 7pm. Then Nurse Carla just turned it off. And when I fed her, she did not have her cannula in her nose; and then we took it off completely and she was doing wonderful! It’s a trial, but I think she has a really good chance of succeeding! Other than that, practice is improving and all 3 of us are anxiously waiting for Dad to come back from Redmond tomorrow (with Mom’s plants and other miscellaneous items from the Redmond house).

Thursday July 10, 2008

It was a feed and grow day. We practiced twice today and the nurse was ambitious and thought I should try nursing both girls at the same time. It was successful this morning – with an extra set of hands, but that is going to take some work. The girls also got their nasal gavage tubes today! We’ve been trying to get them so that we don’t have to take out and insert tubes in their throat every other feeding. It works well, because we can see how much the girls have eaten (by pulling food out with the syringe) and then give them their remaining feeding while I hold them. It’s pretty slick. This afternoon, the girls and I had a nice snuggle and story time. However, the girls were antsy this evening and practice wasn’t quite as successful, but we’ll keep working.

Wednesday July 9, 2008

I was totally surprised when I walked into the NICU this morning and there was this HUGE stainless steel crib with my two little girls all bundled up. The crib seems a bit much, but it gives them a lot more room to handle the girls, plus you can set stuff next to them. The girls like it too :0 They’re both gaining weight still – so I think that they are doing just fine in an open crib – and thus their old apartments disappeared. Both girls did well on their practice sessions today; we’re all getting the hang of it and hopefully will be ol’ pros soon. Evie discontinued her caffeine today, so she is on minimal additives.

The girls also finally got baths. Yep, while the Faulhaber Grandparents came to visit I thought we’d show them what big girls we have – that do normal baby stuff. The girls did just fine – and of course only Maggie let out some cries. And my, did they smell so much better! Maybe we’ll get some pictures from the Grandparents to post because Grandpa Paul apparently is only a baby bath observer. It was a pretty busy day for the girls, but they seem to be handling it just fine. I love it that they are doing normal baby stuff.

Pictures!

Yey, Lynn at the RMD house had a camera cable I could borrow...so there's new pictures up on Aunt Brandy's website. Check out their new 'cage'.

Tuesday July 8, 2008

Today was a regular day. The girls gained weight, blew out their diapers, tooted in their bed (made the nurses laugh and crinkle their noses), practiced twice with mom, ate fast food, and slept. We’re making progress on those ‘go home’ requirements!

I finally got my phone figured out to take some pictures, so here there are snuggled up and tucked in for a good night’s sleep. (Evie is on the left)


Maggie


Evie

Monday July 7, 2008

The girls seem to be handling their temperatures fine with the constant bed temperature, thus we’re making progress on one of the “go home” requirements! Nurse Sue and I dressed the girls in cute little pink outfits today – so cute! At 2pm, Evie got practice and did ok. However, both girls are still getting their “fast food” as I have decided to term the feedings through their OG tubes. Poor Maggie had an incident when her nurses were moving her oxygen and somehow tipped the bubbler (water) and ran water down her cannula. I figured out the “accidental bath” because her clothes were wet – and thus she was colder than she should have been. So, I changed her outfit and snuggled her to warm her up. So, we postponed her feeding until 8:30 pm. But, she recovered quickly and at 5pm the girls went to their open crib! They are sharing a crib so they can keep each other warm. And warm they were – 3 hours later they were toasty 99°F. I’m so excited they are doing well and all bundled up next to each other. With that much bundling, the girls can’t move very far, so I think they sleep pretty well. And Evie is definitely related to the Wilcox side that can sleep anywhere and through anything. Oh, and we get to move to 2 practices a day tomorrow.

For the Dr. report: Maggie’s ductus is still open and she also has an Atrial Septal Defect (ASD). Since there has been no change in these for the last few weeks, we can assume they are not going away on their own. However, they are not causing her any problems either – so we are not going to do anything about them until they do. We’ll end up having regular check-ups with a pediatric cardiologist after we go home to monitor the conditions and probably have surgery before she is 2 years old. However, when Maggie is big enough, they can fix the conditions with a catheter instead of incision. The girls discontinued some of their medicine, including their Epogen shots, Phenobarbital (for jaundice), and Synthroid. Regarding their eyes, we’re not on the surgery list yet, but they are still keeping a close watch on Evie’s eyes. The eye doctor will probably check them again before the end of the week to see how quickly they are progressing. Dr. Hiller said that if it weren’t for the eyes, we’d probably be feeding and growing in Bozeman. Well, at least that tells me that the girls are progressing the way they should be and are the “easy kids” in the nursery.

p.s. I switched cameras this week – and don’t have the correct card reader or cable to upload the pictures. So, there probably won’t be new pictures until this weekend :(

Sunday July 6, 2008

The girls are acting more and more like “regular babies” everyday. Maggie made her mom sad this morning because after her feeding (OG tube) she became really fussy and cried more than she ever has. I think she was working on filling her pants, but even after I changed them she was not content. Her pacifier helped some, but I think she might have been cranky. I positioned her onto her tummy to help her feel more content and that worked, but goodness she was vocal. Maggie is definitely the fussier one, Evie just takes it all in stride. This evening the girls got swaddled in blankets and the heaters turned off in their incubators to see if they can maintain their body temperature. This is the intermediate step before the open crib that I was hoping they would get. And at 8pm, they both were doing great. I held them during their OG feeding – which made me happy because we haven’t had enough snuggle time lately.

Saturday July 5, 2008

Not much was going on with the girls for most of the day – they were just hanging out. However, in the afternoon, Maggie got to do a trial with NO cannula! She had been down at room air for the morning so they took her cannula off for a bit. She eventually needed it back and was in the 30% range when we stopped by to see her at 11:30 pm. However, that was probably because the girls had their eyes checked. The ophthalmologist must have been bored or on call or something because he showed up at 10pm last night (on a holiday weekend??). Evie’s ROP is still Phase II – and slightly worse than last week. Maggie has Phase II in one eye – but the Dr. seemed to think hers was better. I’ll get more details after from Dr. Hiller once she has talked to Dr. Murdock. But they were all snuggled in and fast asleep.

Rock Creek

Dad is fishing rock creek on the way back to Bozeman

Friday July 4, 2008

Happy 4th of July!
And Happy Four Pounds for Maggie. As some of you may have noticied, she was 3.99lbs yesterday - and blew over it to 4 lbs 1.3 oz today! (see picture) Both girls were doing well this morning however, Evie was still in her apartment (versus crib). She needs a little more time - but also she had several things going on yesterday so she maybe just needs a day or two of rest.

Mom and Dad are headed to Bozeman and Rapelje for the Doely Family Reunion. Thus, there will be a delay in postings until Sunday. I was going to figure out how to blog from a mobile device, but haven't got that figured out yet. But, the girls are doing fine, so there shouldn't be much to blog about anyhow.

Have a safe and celebratory 4th of July!

Thursday July 3, 2008

Yey, I have stuff to blog about today. The girls and I had a great learning experience during practice today and we made progress! I did dress them before taking them out of their apartments – they were so cute. Plus I had the camera this time and took pictures – of course they were tuckered out and sleeping when we finally took the pictures. The girls also received their 2 month vaccinations, and they both handled them fine. We were there for Evie’s shots and she gave out one little cry… and then was fine. I’m sure Maggie had a bigger issue with that – she’s the vocal one (Dad calls it preemie fury).

Both girls were given increased feedings today, Evie is up to 39cc and Maggie to 36cc. That sure seems like a lot. The other exciting news is that Evie got to do a trial with an open crib. She started it at 7pm and had several de-saturation spells probably because she is not used to be bundled up, in the light, or in that position. I held her and calmed her down a bit but then thought we should maybe do an intermediate step. So, we put her back in her apartment but turned the constant temperature down to 30° C (86° F), and will see if she can keep her body temperature in there. I’m hoping the nurse will keep turning the temperature down to closer to room temperature as long as she tolerates it. But, I’m happy that we are finally giving her a chance. Nurse Tricia gave the girls nicknames: Evie’s nickname is stinky because she manages to stink up her apartment all the time. Maggie’s nickname is sneaky because she pulls out her feeding tube and nasal cannula regularly. She thought I should definitely blog about that so we can reminisce and have our facts straight.

Wednesday July 2, 2008

The day was uneventful, which I guess is good. Mom and Dad held the girls this afternoon for a little while, until Dad had a conference call and then I held them both. They were sound asleep, and thus practice was essentially non-existent. But the girls had good days and their oxygen needs are leveling out.

Tuesday July 1, 2008

It amazes me that my girls are 2 months old already. Not anything as I imagined the first 2 months of their lives would be. And yet, we have all grown a lot in those 2 months. As Joe said, we’ve gone from “oh my, very premature” to “when do we get to take home our 4 almost 5 pound bundles of love”. Needless to say, I’m getting anxious.

The NICU is going to sound like a hopping casino in the next day or so, because the girls were given a new range to keep their oxygen saturation. It moved from 79-90% to 86-94% - a smaller and more difficult range to keep your sats. So, the alarms were dinging a lot. But that was pretty much the only change. I did hold Maggie this afternoon after practice and while she got her nutritional food – that was nice as we haven’t had much quiet hold time lately. And then I had promised Evie I would read her a story one of these nights, so that’s how I tucked her in tonight.