Another month gone by

Wow, it is December 8 already and the girls are 7 months old! Well, essentially they are 4 month olds, but still!

The house has been a revolving door of company for the month of November. Cousin Shari and Oma and Opa, and Great Grandma Evelyn came to visit and help out 2 weeks in a row because Dad had to go to Redmond. Then Gma and Gpa F came for Thanksgiving. But now we have a few quiet weeks before the Christmas celebrations start.

The girls have started being more fun everyday. Evie's latest thing is "Thhhpt" - she can do it and loves it when we do it back - makes her laugh even mid-cry. She is still the fussy one and wants to be toted around like a sack of potatoes (thus the nickname "spud"). She also goes by Evie bear (i.e. Halloween costume) and Evie Claus (red Christmas outfit).

Maggie has become the talker - she will talk to us or stuffed animals or the TV. She is also mellow most of the time and can hang out with her toys or watching TV (oops). She is the thumb sucker and likes to play with her hands. Her nicknames are Maggie Bug (Halloween costume) and Maggie Elf (green Christmas outfit).

The girls got another round of their RSV shots - not fun, much crying. But they weighed in at 13 and 11 pounds for Evie and Maggie, respectively. They've had a few stuffy noses, but thankfully staying fairly healthy - thanks to handwashing and the fact that the girls don't go anywhere in public.

Otherwise all are doing well and looking forward to the holidays!

Oh, check out the new pictures also.

10 shots

Thursday was vaccination day for the whole family. Mom & Dad got their flu shots and the girls got 4 shots each - Synagis (to prevent viral respiratory tract -RSV - infections), flu shot, and 2 of their 6 month vaccines. This is the first time the girls were really upset by their shots, but they handled them just fine afterward and only needed a little tylenol. Otherwise, it was an uneventful doctor visit. The girls are gaining weight appropriately and Evie has almost reached the 5th percentile line on the growth chart for her adjusted age. I updated their weights on the top of the page also.

On Tuesday this week, we went to have the girls' photographs done. We did family pictures and a few of the girls in a basket, but Maggie wouldn't smile at all. So, we rescheduled for the Monday before Thanksgiving. Hopefully we can practice getting the girls to lay on their tummies and lift their heads up. But Evie is not very fond of tummy time.

Evie and I played dress up today. I'll have to download the pictures after I recharge the batteries. Then she got a bath - with minimal crying this time! Maggie was a sleepy-head today - she did get her Saturday bath, but maybe we'll play dress up tomorrow.

6 months old!

It is amazing to realize that we have been at this for 6 months already - wow about the amount of time that I was pregnant! So, as we zip into November, I realized that there are so many things I should be documenting and sharing. I know, every parent thinks each little step is so amazing, although every child goes through it. But, for the sake of the girls' Aunts and Uncles who don't get to see them but once a quarter or less, I'll share!

First off, I am writing this at 5:30 am, after feeding the girls for the first time this morning. However, it is essentially 6:30 am because we came off of daylight savings time. So, the girls slept from 10pm to 5:30am, 7 1/2 hours! And I woke up before they did and decided I would feed one before the other one was crying. I guess I will handle Evie being awake all day if she sleeps all night!

Last Saturday, Oct. 24, Maggie took a bath without crying!

Evie is trying to grow out off all of her clothes. She is still in 3 month clothes, but some fit better than others. Little Maggie is right between the newborn and 3 month clothes and so they are either too tight or too big. We did have really cute Halloween costumes, thanks to Uncle Andy. They were a bit too big - mostly the head, but I put them in them anyhow. I can't really say we celebrated Halloween, because we sat at home and only had 2 trick-or-treaters. Of coure, those were our friends who brought their little princess, Rhianna, and dragon, Owen over - so cute! But, looking at our neighborhood, it is totally understandable no one trick-or-treats - we are too spread out for efficiency. So, we pretty much just dressed the girls up for pictures - the outfits are too warm to wear in the house for long. But my Evie Bear and Maggie Bug are very cute! I think I will continue to put them in those sleepers as long as they fit them even though Halloween has passed :)

The girls have distinctive cries these days. Evie is usually the crabby one who wants attention, and does the normal cry. She even gets the tears going if you try to lay her down. As I mentioned earlier, she is awake most of the day and will only take cat naps while being held. She fell asleep on my legs yesterday. And I typically come home at 4:40pm to her asleep on the nanny. And when Evie is crabby, she prefers to be carried around like a sack of potatoes - and thus Joe has nicknamed her "Spud".

Maggie, on the other hand, is a little bit more calm and will hang out in the swing (typically falling asleep) or on the floor/playmat and just hang out. However, when she cries it is the saddest thing ever, and sometimes she just wails when the situation is not that bad. But oh it just breaks your heart. She must just get her tongue curved just right to make it sound like that.

But overall, the girls are doing great. They both like to 'stand' on my lap and push up with their legs. Preemies apparently have high muscle tone in their legs, which is why these girls can do that. Yet, they are not pushing thier heads up when laying on the floor. We need to practice on this, but neither are very interested in practicing. Tummy time is not Evie's favorite thing these days - she fusses until she gets put on her back. They are also still keeping their heads turned to the left or right instead of just laying with their faces facing up. Maggie looks up a little bit more - and is interested in the mobile and other toys a little more than Evie.

Oh, and I guess I haven't written that we did hire a nanny 5 weeks ago. Her name is Megan and she grew up in the area and recently graduated from high school. She has had more experience with toddlers than babies - but is very attentive to the girls and things are working out well. She works 8:30 am to 4:30 pm, so I work from 7:30 am to 4:30pm and Joe works 8:30 am to 6pm or so.

(I started this post a week ago and finally finished it at 5 am on Saturday morning - what does that tell you??)

It's about time, mom!

Gee, I haven't had much of a chance to post anything online, nor have I been very good at taking pictures the last two weeks. The girls are becoming so much more active. They began smiling responsively around September 28. Then last week they made fun sounds and giggled. Both girls started sucking their thumbs - or more typically their entire fists on October 14. Maggie is better at getting hers in her mouth than Evie. I took a video of Maggie doing it the first night. It is quite short.

Then, the girls were playing on the floor on Oct. 16 and I took the following clips of them being happy. They are their video notes for the Aunties Brandy and Christie.

5 month old milestones

Last night was a great night, and what better time then on their 5 month birthday?! Evie has been weening off of her oxygen and slept all night last night without it! She has been off of it since 10am yesterday morning and is doing great. It is wonderful as it makes her so much easier to tote around the house.
Then, the next milestone was that the girls slept 6 hours in a row last night. It may have to do with being out until 9pm with the Foundation staff at the CFO's house. But hey, we'll take it. Oh, and when the girls did wake up at 5am, they tandem nursed and Evie went straight to sleep. Maggie wanted some supplement, but then happily dozed off until 8:30 am as well. What a wonderful way to start the day!

Here are the girls' 5 month pictures!

Evie

Maggie

Hungry baby

This is probably the most timeliest post I have done in a while, but it is just so funny!

The story goes, I came home from lunch and Joe had fed the girls 1.5 to 2 hours before, but they were squirmy. So, I gave Maggie a snack and put her back to bed while I finished eating. Joe went upstairs to check on the girls and exclaims "Evie is latched onto Maggie's head!". I of course, wanted a picture, but that wouldn't have done it justice. Enjoy!

Across the state Doctor visits

We have visited 3 doctors in 3 cities in Montana in the last 7 days - but they all had good results!
On September 16 we drove to Butte to visit the eye doctor for a follow up check. The eye exam was much easier than usual as the Dr. was able to just look into their eyes instead of prying them open. The results were that both girls' eyes are nice and clear! They are both still far sighted as normal newborns should be, so that is good too. We get 4 months before the next exam (which puts us driving over the pass to Butte in the middle of January.

Then Wednesday the girls had a weigh in at their pediatrician's office in Bozeman. They both gained, but Evie is extending the gap between them. Don't worry, we have an excuse for Maggie in the next paragraph. Evie is up to 9lbs and Maggie at 7.5 lbs. Go girls!

Finally, On Monday September 22, we visited the pediatric cardiologist in Billings. It should be recorded that we were 22 minutes early for the appointment - and if you know me - that is amazing. I forgot that it was Billings and apparently no one arrives that early at the hospital as there was no traffic and the parking lot was empty. I understood Oma's concern about parking when we left at 10am as there wasn't a spot left in the parking lot. Oh, but back to the appointment. We flew threw the first 20 minutes - Maggie even had an EKG with lots of little stickers that looked like puzzle pieces. I'm not sure what that showed, as Joe doesn't have experience reading those (not something we learned in the NICU) and it must have been pretty normal. When the doctor finally arrived in the office around 9:15 am (one of the reasons I don't arrive early to appointments), he did her exam and said it was pretty boring/normal. He didn't hear a murmur either. Then he did her echo cardiogram and verified that her ductus (patent ductus arteriosis) had closed, but she still has a moderate to large sized ASD (atrial septal defect). And when he measured the ASD, it was 0.8 cm - which seems large to me even. Luckily, it isn't really causing her any problems except she is working a bit harder and thus burning more calories and not gaining weight quite as fast. She will eventually have it closed, but hopefully we can hold out until she is big enough to do the surgery via catheter instead of open heart. The Doctor said sometime between the ages of 4-6, but he said the catheter was an option after she was at least 5 kg. Things that would cause us to close it early would be if she has problems with lower respiratory infections (pneumonia) or is not regularly gaining weight. So, the story is get her to grow and we'll take care of it when we need to.

Back to work and Mr. Mom

I returned to work on Monday September 8. And it hasn't been too bad, I think it is much easier to leave the girls at home since Dad is staying at home. Plus, I get to come home at lunch - so I am really only away from them for 4-5 hours. I also think having to leave the girls in the NICU also has me accustomed to leaving them for a few hours at a time.

And Dad has been doing an amazing job at home. Not only is he handling two babies, but he has also managed to finish projects that I could not make any progress on. After Brandy and Zach removed wallpaper and primed the walls, Joe finished painting the holding pen and turned it into the playroom...

Yey! Now I have to put something up on the walls and find some cute furniture to fill the room.

Then, Joe finished putting the grommets in the curtains in the nursery, so that is finally done. Looks cute huh!

Baptism weekend

Our family rolled into Billings a little after 11am - a bit late for our 11am appointment with the pastor. So, Oma and Aunt Christie met us at the church and swapped cars with kids so that the girls could get to the house and have some lunch. That went well, but we forgot to give Oma and Auntie directions on how to get the girls out of their car seats. They figured it out with the help of the neighbors.

The celebration brought in all the Aunts and Uncles to Billings to meet and sponsor the girls for baptism and it was the first time for many to finally meet the girls. Thus, the house was quite aflutter with people and conversation both Saturday and Sunday.

The girls were baptised at Good Shepherd Lutheran Church on Sunday September 7, 2008. This event was our first "public" event followed by a gathering of relatives and friends at the Hageman's house. The girls were amazingly well behaved during church, probably because they were held the entire time. And they were brought into the family of God surrounded by numerous family and friends.

The gathering at the Hagemans was a bustle of food and conversation, followed by ooh and aahing over the girls and the cute gifts they received. It was so wonderful to get to see so many people that have been watching over our little girls for the past 3 months. It is such a blessing to have such wonderful friends and family.

We should have lots of pictures of the girls, but none of them are on my camera. So, I'll get those who took pictures to post them.

Lots of visitors

It's amazing that 3 weeks have passed since I blogged last. At first it was because there was nothing to blog about (and no time to do it), but then things picked up and were very busy around here. Labor Day weekend is an annual gathering with the Wilcox clan - primarily hosted by the Hagemans and Schafers up at Ennis Lake - but it all starts with a lot of preparation. And this year the prepwork was in my kitchen! But thankfully, not really done by me. Oma Bev came to hang with the girls and I and she spent the first day in the kitchen. Joe was stunned because we still had to scavage for dinner! But we got food for the entire weekend. Oma said - don't get used to me coming and cooking at your house, and I responded - don't get used to me cleaning up all of the dishes after you! It was a mutual understanding. But the house got tidied up on Thursday before the Hagemans headed for the Lake.

On Friday, Aunt Brandy and Uncle Zach flew in from Phoenix to see their new nieces. Actually, they came to help me get projects done that I just couldn't make any progress on. I think I had Uncle Zach fixing drains and putting items up on high shelves within 2 hours of arriving. But there was lots of baby cuddling too. Great Aunt Carol & Uncle Jim stopped by to meet the girls and see the house for the first time on Saturday. Of course, Aunt Carol got the whole routine, holding, feeding, & diapering for Maggie (Thanks Aunt Carol!).

Then it was off to the Lake. There was quite the gathering at the lake and some fierce ping pong and foosball competition. But the Lake was for visiting only as the weather was crummy! Cousin Leslie became the official baby holder along with Great Grandma Evelyn. Oma and Opa even gave up their master bedroom for the grandbabies and parents. Apparently, they didn't want to have to get up every 3-4 hours during the night! The girls did great - because of lots of holding. As far as the first overnight trip, we did fairly well with only one major forgotten item, an extra bottle of oxygen. Dad had to make a run back to Bozeman to pick up the extra - oops.

Labor Day Monday brought us back to Bozeman and rejoined by Aunt Brandy & Uncle Zach. Aunt Brandy jumped into her major project of turning the holding room into the play room, and the first thing on the list was removal of floral wallpaper. She did awesome and had it all down in just over 4 hours. They also ran errands and other various items before priming the walls for the paint. That was a late night project that everyone participated in but me - I was out of gas and needed to feed the girls. On Thursday they headed back to Billings.

Yet the house wasn't empty for long as Uncle Andy and Melanie came to tour Bozeman Thursday through Saturday. We gave him a good excuse to come to town.

We did visit the pediatrician on Tuesday the 2nd. The girls are still doing really well. Evie weighed in at 8 lbs! Maggie is still working on those quality pounds and is 6lbs 15.5 oz. But they are both jumping up on the growth chart. The Dr. did say that their heads are the first things that grow and Evie's looks huge! Other than that, Maggie is still having problems with giving her food back, so we started her on Prevacid for reflux.

A real mom

It’s official, I feel like a real mom…I cannot get anything done during the day except taking care of babies and am lacking sleep. This is more on the lines of what I expected of motherhood Thankfully, I have a husband who takes a wee morning shift of feeding the girls so I can get more than 1.5 hrs of sleep at a time.

Joe and I are getting more experienced with hauling the girls around in the car as we have been to the pediatrician twice and to Butte to see the ophthalmologist. We like our pediatrician – thanks to cousin Leslie for the recommendation! The pediatrician was worried about us after our first visit on 8/14 as neither of the girls had gained much weight since discharge from Missoula. However, upon our follow-up on 8/18, both girls had packed on the ounces and she was thrilled. Evie weighed in at 6 lbs 15.5 oz and Maggie was 6 lbs 3 oz. Poor Maggie does have a bit of an issue as she has thrush (yeast infection in her mouth), and she is not fond of her medicine and tends to give back her meals with it; or, she might have a bit of reflux. So, Evie has extended the weight gap even further over the past few days as she loves to eat!

We met the Missoula ophthalmologist in his associated clinic in Butte last Tuesday, as he takes appointments there one day a month. Butte is a MUCH faster drive than going all the way to Missoula. This appointment gave us good results as both girls’ eyes are looking well. Of course, the eye exam is never fun (Joe refers to it as aggressive eye interrogation), and Maggie cried loudly, but we figured out to give Evie her binky to soothe her. We have another follow-up next month to verify that Maggie’s eyes are totally clear, but we anticipate they will be mature and ‘clean’. The ophthalmologist did say that the girls were at a higher risk to have nearsightedness due to the laser procedures, but they were already destined to need corrective lenses. However, he did see that Evie is still currently farsighted, as typical for babies.

Both girls have figured out how to get their hands to their mouths. Evie sometimes helps to “hold” her bottle – although she is not very good about holding in her binky. I did go buy a bouncer as Evie likes to be awake after she eats. She is starting to enjoy it, but hasn’t quite gotten used to it. Evie did go on a walk with Mom and Bruce last night in the baby carrier – it didn’t put her to sleep, but she sucked on her binky most of the time and seemed to enjoy the fresh air.

The girls definitely are not neglected... Grandma and Grandpa Faulhaber spent last weekend down here – weeding the grounds and working on curtains. The girls then enjoyed a day with cousin Shari last Monday. I claim that she spoiled whiny Maggie and held her and snuggled her – and so now Maggie will cry until she is held and then she will fall asleep. Opa and Oma stop by as they head through town each Thursday and Sunday on their way to and from the lake for some cuddle time. Great Grandma Evelyn spent the day with the girls on Friday and did her share of cuddling and patting backs also.

Stroller ride

We finally did something that was worthy of blogging so that I could add another post - we took the girls on their inagural stoller ride in the double stroller. Granted, it took me 10 minutes to figure out how to get both car seats in it (move the front shade forward, remove the snack tray......), but then we took the girls out with the dogs and the Faulhaber Grandparents for their first walk on Saturday evening. Now that I have the car seats in, it should be much easier to get the girls ready for a nice jaunt around the neighborhood. However, we are a bit limited in the areas to walk because we live on the only one paved road before South 19th and I don't think the girls are quite ready for dirt roads yet! Otherwise, things are just "normal" at home - the girls are sleeping, eating, and pooping.

Getting settled

Sorry I haven't posted for a few days, but you can guess that we have had our hands full. It is really going quite well - the girls are used to sleeping for chunks at a time and we usually feed them back to back (or at the same time if bottle feeding and there are 2 parents available), so there is a little bit of time for peace and quiet. However, the parents' sleeping intervals at night are shorter than we would like, because a feeding does take 1-2 hours. The challenge has really been making sure the house is set up for babies with monitors. So, unfortunately, the girls are pretty much held hostage in their nursery.

We did take Maggie off of her oxygen on Sunday since she doesn't really need it. Then on Monday she got a bath, and Tuesday I put her in the baby carrier and walked around the house for 10 minutes or so. She was helping me do chores, but then I put her back to bed and hooked her back up to her monitors. Since Evie is still on the oxygen, she hasn't had as much fun and stays within about 3 feet of the crib. We do have portable oxygen tanks, but it takes a little time to move the regulator and cannula. I'm hoping to do a "fashion show" one of these afternoons, but have lots of not as fun stuff to catch up on first.

Sunday was visitor day - and even though they tried to time it so that there was only one group at a time...they all showed up at the same time. But I figure the girls are used to having people around in the NICU, so it didn't bother them too much. Grandpa Paul and Grandma Diana brought Bruce, our dog, home and were the first visitors. They actually timed it quite well and stayed for a few hours before those passing through Bozeman showed up. !!Thanks for taking care of Bruce for us!! Then Frank & Mary Hemphill and the Schafers (my wonderful housecleaning fairies) showed up to gree the girls and were quickly followed by Opa and Oma (Gpa Rich & Gma Bev). Most of that crew left by the time Timmie-Lynn and Darren DeHaas showed up as they were headed from Boise back to Billings. We had a good chat with everyone and Maggie was even awake for most of it!

So, all is well in the Faulhaber household. Here are some pictures of the girls at their homecoming, Dad's baby beard (yes he shaved within 2 hours of being home), and the girls being cute in their crib.

Dad's baby beard (to get us home) and Maggie

Heading Home!

The day has finally arrived - we are in the car and headed home...all 4 of us! The night went well and I guess I'll get used to sleeping for 2 hours or less at a time. The morning was very busy with getting the girls fed, going over last minute items and paperwork, waiting for discharge orders from Dr. Hiller - and chatting with her, and gathering tons of baby supplies and stuff with lots of help from Nurse Marsha. Dad was very anxiuos to get out as soon as possible and went into "crisis mode"' which is sometimes when he performs best. He had the car loaded and checked out of RMH by 10:30 and we hauled the babies with monitors and oxygen through the NICU for our "victory lap" and quick good-byes to the car. We finally got to take the girls outside and put them in their little car seats in the car + happy tears! We waved good-bye to Missoula right around 11 am.

The first hour of the drive has been uneventful - and allowed mom's squished butt in the backseat to catch up on blogging. We'll see how the rest of the day goes and try to blog tonight or tomorrow.

Loves to all for your support during the crazy start to this journey. Here comes the fun stuff, right?!

Friday August 8 2008

Today we finally got to room in at the hospital. Again I checked into room 119 at 2pm and this time Jinny and I rolled the girls' crib down. It is a bit squished in there even though it was a triple room...but it has 3 beds and storage of other cribs, chairs, and other extra labor & delivery stuff. So the nurse comes to check on us at feeding time and brings bottles. Dad came over after he was done working at 6pm and helped with feedings and picked up Subway for dinner. We did let him go back to the RMH at 11pm to sleep until 3pm. I figured he should at least have one turn walking over to feed in the wee hours of the morning.

Evie has been the super eater today and Maggie has been sleepier. But they are both doing great and the NICU staff are anxious for us to leave tomorrow.

I forgot to mention that Evie passed the 6 pound mark on Wednesday. Maggie is almost there but probably will hit it the first couple days we are home.

Thursday August 7, 2008

Surgery - or the laser procedure - went well. It started a little after 8pm and was done by 8:45pm. They gave her one dose of Versed and Morphine and then something afterward to help her wake up. She was doing pretty well at 9:30pm. When Evie gets awake and hungry they will feed her and ween her off of her IV hopefully by morning. If everything goes fine I will room in Friday night and hopefully go home Saturday or Sunday. Maggie is just hanging out.

Wednesday August 6 2008

Status: Nevermind, we,
are not going home. The monitors came today and we learned how to use them. We packed the car with all the stuff we have accumulated at the RMD house and took my overnight bag to room 119 at the hospital. Then the girls had their follow-up eye exams and the plan changed again. Evie still has a little spot that the blood vessels appear to be still growing on her right eye. There is a chance that it might start receding, but we would have to return next week to check. And then if the procedure needed to be done we would have to re-admit. So, it makes sense to just fix the spots now and hopefully have a speedy recovery and go home this weekend. The procedure would be short and they would do sedation instead of paralyzation, so hopefully the recovery is nothing like the original surgery. Maggie's eyes seem to be fine with only a little bleeding that is mostly resolved. So, with
the car loaded and not really enough room to fit everything in one trip, we decided to drive home one more time without the girls. Granted the last two trips to Bozeman I thought would be the last without the girls. I sure hope this one really is.

Tuesday August 5, 2008

The girls made their first trip out of the NICU today. Granted, it was rolling in a crib down the hall to the well baby nursery where they got their pictures taken. They are finally up on the Community Medical Center website but I’m not sure how long the picture will be up there. Also, the information isn’t quite correct because the nurse made up the heights as I had a momentary memory lapse. Otherwise, they had a pretty normal day.

Go Home Status: At 5pm, the social worker finally got someone to work out a plan for getting us medical equipment in Bozeman. It was quite a hassle, but the Missoula company is contracting equipment to a Bozeman company so that they can rent it to us and we will have a service provider in Bozeman. However, the contract did not get finalized and thus the equipment did not get delivered and thus we did not get to room in. The doctor wants to make the rooming in a trial run with the equipment we will go home with, so that is postponed. I just hope it all falls into place tomorrow and we can room in Wednesday night and head out Thursday afternoon.

Monday August 4, 2008

Go Home Status: The hospital social worker is trying to get us all the equipment we need to take the girls home. This equipment includes oxygen, heart rate monitor, & oximeter for both girls. Apparently it isn’t as easy as we hoped because there isn’t one provider that rents all of those items in Bozeman. And even if we can get all those in Bozeman – they usually come out to the house to set it up…but we need it to get out of Missoula. So, they are working on logistics but hopefully we get the stuff by tomorrow afternoon. If that works, the plan is for me to “room in” at the hospital where the girls will stay in the room with me and I get to take care of them all night. It is kind of like a practice round and it would be best if we had the equipment we will be using at home. The next step is the eye exams and those happen late Wednesday afternoon. So, if all goes as planned we will be headed home Wednesday evening. Now, I have to remind myself that things don’t always go as planned – as evidenced by everything else with these kids.

Otherwise it was a normal day of feeding and not feeding. Evie did get a bath this afternoon – trying to get rid of the ew gross toe jam. Joe and I are in that phase of new parenthood where we think the girls’ bodily functions are funny (and encouraged) and it is cute when they cry. I’m sure that won’t last too long.

Sunday August 3, 2008

Both girls gained weight last night! That is a must have to go home this coming week. They also did the car seat test this morning at 6am and did fine. Evie did require a little higher blend of oxygen, but that will not be a big deal as she will go home on oxygen anyhow. Mom and Dad were both frustrated with some of the girls’ feedings today – but they made up for it at the 8pm feeding. Part of the frustration was probably that Dad finally took part in the late night feedings and was tired and Mom needed to get out of the RMD House. So, a nap for Dad and retail therapy for Mom must have done the trick. Yes, I realize we won’t have these luxuries going forward, but we’ll take them while we can get them. We also checked off watching the newborn video and CPR video (yesterday) from the list. We’re getting so close to going home – even the receptionists and nurses are on watch.

A trip to the NICU

I made this silly little video for those who didn't get a chance to visit to see what it was like on a typical trip to the NICU.

Guestbook

Please leave a note for Evie and Maggie in their guestbook!

Click on "Post a comment" to "sign" the guestbook. You don't need to have a blogger account, just click "Name/URL", type your name in the box and write your note in "Leave a comment".
Please include the following:

• Name
• Relation
• Location
• Note for the girls

I should have put this together when I first started blogging because I have heard so many people say that they enjoy reading the blog and have shared it with their friends. And now as we are a few days from going home and starting this thing called parenthood, I finally get around to putting in this post.

So, I would love for the girls to have a note from all of their "subscribers" or those who have been watching over them for the past 3 months.

Saturday August 2, 2008

Joe and I spend a lot more time in the NICU these days – every 3 or 6 hours for 1-1.5 hours at a time. (OK, Joe sleeps all night, but usually helps bottle feed during the day.) And because of that, better feeding, and a go home plan – both of the NG tubes are out! Of course, did I remember to take pictures, no. Actually, Maggie pulled her NG out yesterday and we just didn’t put it back in. The goal is for no NG feedings and weight gain for a couple days and they’ll kick us out! The other exciting thing is that we took the car seats over to the NICU this evening. The receptionist and nurses were all excited for us. We’ve been anxiously awaiting the “car seat test” in which they put the girls in their car seats for 3.5 hours to make sure they don’t have any breathing issues. I’m not sure they will do the trial tonight, but we are hoping to cross it off the checklist shortly. The end of the NICU stay is in sight!!!

Friday August 1, 2008

It is really quite neat to be able to wander around the NICU with a baby in my arms, it seems so out of the ordinary since they are usually hooked to monitors. But Nurse Lisa disconnects Maggie and greets me at the door and then I feed her without the monitor – it is good practice for when we won’t have numbers to look at. Evie still has her oxygen and has a few more problems while she is eating, so she doesn’t get disconnected as often. The girls worked very hard at eating all day – we did give them a break at 2pm and let them sleep since we didn’t ease them into the full time schedule very much. But then Maggie woke up at 4pm and was wide awake. We fed her at 5pm and she still didn’t want to go to sleep. I finally changed her very heavy diaper at 7pm and she dozed off. Evie, of course, sleeps as much as possible.

Dad did his part in feeding today – and gets the marks for making each girl regurgitate once. I’m not sure if it was bad luck or poor form yet. And it is pretty entertaining to laugh at the girls’ bodily functions – they have some fantastic burbs!It is really hard to believe it is August 1 and I have 3 month old twin girls, which have never been home. I guess it will be like I had full term babies this week and will take them home just like newborns. Thankfully, I suppose, we do know a bit more about taking care of newborns and have had practice in some areas!

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.

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!

Comments are welcome!

Just a note to let you know that we love reading your comments...so feel free to type a note as often as you like. I know there are faithful readers out there, and some who just stop in and catch up once in a while - and we'd love to hear from all of you.

You don't have to create an account to leave a comment - just click on "Name/URL" and type in your name or use "anonymous" and then type your name at the end of your note so we know who it is from.

I can't wait until the girls get to meet all of the people who are pulling for them - thanks for keeping us on your list.

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.