Daily Dose: Sunday, July 5

Today was a good day for Hope. She continues to do marvelously after her surgery. She has gone from having roughly 40-50 alarms- a portion of which are true "events", a fewer portion are "significant events" and even few cause any big concern or uproar- to having................ (insert drumroll here)................................... 5 events!!!!! This is great progress! There is a possibility that these have been reduced due to the sedation Hope was on following her surgery since this also happened after Hope's tracheostomy, but as she continued to recover from that surgery they gradually increased. We hope that these have honestly improved, not just because of her sedation, and we will update this number every day from now on.

Hope was very excited to be able to wear clothes again. As you can see, she is wearing a floral number from the Hope Collection.

Daily Dose: Thursday, July 1

Hope is prepared and ready to go for surgery tomorrow. She is tentatively on the schedule for 2pm but if emergencies (other surgeries) come up she may get bumped later in the day or even to Friday morning. Hope spend all day getting ready for her surgery. She took a long soak in the tub. Hope won't be able to take a bath for 10 days (ewwwww) or so after the surgery, but once she is all healed up and her incision looks good she'll be back to splashing around just like the does now.

As of last night Hope was up to 10 pounds 13 ounces!!!! She is getting closer and closer to 11 pounds!

As you can see, Hope is still maintaining her fashion sense. She is modeling a new ensemble from the Hope Collection. *Note the matching socks.

Hope has had lots of visitors in the last week and wants to thank everyone that has come to visit her: Nancy Vardon, Judy Convertini, Caitlin Zinnecker, Joyce Carlson and Pastor Ruth. She loves seeing all of these people who care so much about her!!

Daily Dose: Sunday, April 26

Hope had a nice, quiet and restful day today. She has gone two and a half days without an episode!! But she still seems to be a little uncomfortable and struggling to breathe. Peggy, Hope's favorite RT, propped her up on a boppy pillow and that made Hope more comfortable. Hope's broncoscopy is scheduled for tomorrow at 2:00 or 2:30. We are all hoping that this will give the doctors, and us, a clearer picture of what needs to be done to make Hope more comfortable. We pray that it goes well.

Just thought I would point out that Hope has yet another incredibly adorable ensemble on today. This piece of the Hope Collection sports a ladybug (Hope's favorite) on the front. Very cute!

Daily Dose: Thursday, April 23

Hope showing her love for her daddy!!

Hope had a fairly quiet day today. She didn't have any episodes during the day (good job Hope). The blood cultures have not shown any infection... yet... but she is still on antibiotics for good measure. In the rounds they discussed giving her a blood transfusion because her blood count seems to be slowly creeping down. They decided not to do it today, but haven't ruled out giving her some blood in the next few days.

As you can see, Hope is modeling yet another piece of the Hope Collection. This cute piece was given to Hope by Aunt Em (gotta represent the Daddy's side of the family too!). Daddy, obviously, thinks this is the best ensemble to date, Mommy isn't so sure about it, and Hope is in the middle. She thinks it's special, but she just likes clothes in general.

Daily Dose: Thursday, April 16

Hope re-wearing her inauguration hat

Hope had a quiet day today. She is still on 3 litres of vapotherm. She will stay on that until she has a couple good, solid days. Today was better than yesterday. She still had a few episodes but for the most part she recovered out of them on her own. Hope was very happy that she was able to snuggle with Mommy again today. Mommy was very happy about it as well!

Hope continues to do well in the Biggest Fatty competition. She has gone above and beyond the 6 pound mark. She is up to 6 pounds 3 ounces, which is over 4 times her birth weight!!!!! GO HOPE!!!

Hope has another new ensemble. This adorable part of the Hope Collection comes from Jenny Carlson and Hope's friends Zachary, Elijah, Hayden & Tanner Carlson. A BIG THANK YOU to the Carlson Clan!!

Daily Dose: Easter Sunday, April 12

Hope & Grandpa R's hand: look how big she's gotten!!

Hope and her own personalized blanket!

The family

Hope's Easter Dress

Hope's Easter "play" outfit

Hope's fuzzy bunny butt!

Happy Easter to everyone!!!

Hope had a good day today. She was surrounded with family as we celebrated Easter. Hope's day started out with a visit from the Easter Bunny (not a real bunny but a surrogate). The nurses in the NICU hid little eggs around the unit for the parents to find, it was very very nice of them. Then Hope got a special surprise! Hope's favorite RT, Peggy, brought Hope a personalized blanket (shown above). Peggy embroidered Hope's name and date of birth on the blanket. It was so thoughtful and Hope LOVES it!!!

The next big move for Hope today was changing into her very own Easter dress!! Aunt Em came yesterday with plenty of new outfits, including an Easter dress. Hope LOVED the new item of the Hope Collection. It had no ruffles (Hope doesn't like ruffles) and it was very classic and stylish. Classic chic even.

After a nice family picture, with Hope sitting up working on her neck muscles, she had some snuggle time with Mommy and some successful "non-nutritive" feeding. Then it was time for the wardrobe change....

Next, Hope was sporting the "Happy Easter"/fuzzy bunny butt ensemble, also a new feature from the Hope Collection. Hope liked this outfit, minus the difficulties in getting it on. She especially liked the cute little fuzzy bunny on her butt.

Hope is getting very close to 6 pounds, so we are waiting for that big milestone. She was looking incredible this weekend, even when she wasn't always behaving. She is quite the character and such a cutie!!!

Daily Dose: Wednesday, April 8

Hope had an AMAZING day today!!! She has been officially weaned off the vapotherm, so she is now on just 1 liter of flow on the nasal cannula. She is doing GREAT with it!! Her feedings were also increased today from 18mls every 3 hours to 25mls every 3 hours. And she is tolerating that well so far!! Since Hope is on the nasal cannula, they decided to let her try the "non-nutritive" feedings again, but... since the doctors think Hope was a little overzealous and was being more successful than was expected, they allowed them to be "semi-nutritive".

Hope has a lot going on in her crib today. We have a new ensemble for the Hope Collection. Hope is modeling an outfit given to her by Grandma & Grandpa H, it is very comfy and cute. Hope also has some things to look at in her crib. First, she has a string over her crib where we can hang toys for her to play with. You can't see the string but you can see the tip of a ring of keys hanging there. Next, Hope has some beautiful black and white (and red and blue) pictures in her bed that her friends Pat & John Durham gave to her. Hope LOVES looking at the pretty pictures. She looks forward to using the pretty crib bumper that came with the photos but apparently there are some NICU rules preventing the bumper from being in her crib.

Hope is VERY thankful for all these gifts, especially since yesterday was her 4 month birthday!!!!

Daily Dose: Sunday, April 5

Aunt Em picked out Hope's outfit, explanation below

Aunt Em and Hope!!!

Hope put on a stocking cap and started yawning!

Hello Bright Eyes!!

Hope had a great day today!! She started off with some good snuggling time with Aunt Em. Then Aunt Em helped Mommy give Hope a bath and put on new clothes!!

Hope weighed in today at 2440 grams, which is 100 grams up from yesterday! She was doing well today, still on the vapotherm and doing well with her feed as well. She is getting some residual but they keep feeding her, eventually she'll figure it all out!!

Now, about Hope's outfit today.... So Aunt Em was in charge of the outfit today, which obviously meant the orange hat (which just happens to be made with love by Aunt Em's friend Madeline's mom, a big thank you to Madeline's mom!!!). So once we established the hat selection it was time to pick out the rest of the outfit, the only problem was that Hope doesn't have any orange clothes!! Aunt Em was appalled at this and has vowed to rectify this situation immediately. So instead, Aunt Em picked the next cutest thing she could find. This lovely ensemble was given to Hope by one of her nurses, Angie, so a big thank you to Angie for the ADORABLE little lady bug outfit... You are probably still wondering why Hope has on those silly looking, odd-shaped socks. Aunt Em had nothing to do with the socks. Hope's feet were cold so Mommy had to put something on them and apparently the makers of baby socks make square socks. Well I have some news for the baby-sock-making-company: baby feet aren't square!! But at least Hope still looks incredibly adorable!!!!

Daily Dose: Thursday, April 2

Hope had an amazing day today!! As you can see she has many improvements in her lifestyle. She convinced the doctors this morning that she was ready to get off the ventilator, so now she is on the vapotherm again and is a much happier camper.

After she convinced the doctors to lose the ventilator, she then convinced them that she was ready for a move up in the world. Hope is now in a BIG GIRL CRIB!!!!! She has officially graduated from an isolette to a big girl crib. So far she is maintaining her body temperature very well and sleeping through all the noise that she now hears.

Just when you thought it couldn't get any more exciting in the life of Hope... it did!! She started her feedings again today. They are starting small, 6 mls every 6 hours, but that is a great start so far. She had been under the care of the surgeons since her surgery but today they felt that she had recovered to the point they could hand her care back over to the neonatologist, which is a great sign of her recovery.

As you can see, not only is Hope in a new BIG GIRL CRIB, but she is also modelling another ensemble from the Hope Collection. Underneath her blanket she is wearing a beautiful green outfit, sent by cousins Kelly and Jerry, trust us, it's very cute. The adorable hat was made, with love, by Carol Weiden. So big thanks to cousins Kelly & Jerry and Carol W.

Daily Dose: Thursday, March 26

Another great day for Hope!!!! Today Hope spent most of her day resting and recovering. Hope is still getting some Morphine and Versed which is keeping her very very comfortable. She had a chest x-ray this morning which showed improvement from yesterday's x-rays so her ventilator settings did not change.

Hope has peed off some more of the fluid she was retaining so her weight was 2310 grams today, but no worries, that is still above the 5 pound mark!!!!

Even though Hope hasn't been feeling her best lately, like a true fashion icon that she is, she did not let that get in the way of her high fashion lifestyle. Today Hope was modeling a new addition to the Hope Collection: a rockin' pink hat (brought to you from designers "cousins Kelly and Jerry"). Hope sent a special message to Aunt Em today, she said that she is truly beginning to understand how difficult it is to live in the world of high fashion and that she will need Aunt Em to teach her all the ins and outs, which obviously means A LOT OF SHOPPING in the future. I guess we can handle that.....

Thanks from Hope

Hope would like to thank Aunt Em for her cute outfit today! The yellow duckies got her in the mood for spring!

Daily Dose: Wednesday, March 11

Hope: day 94

Hope had a very alert day today!!! And she looks great!! Today she had a head ultrasound and echo cardiogram in order to rule out the infection might be coming from the abscesses in her heart or brain. Even though there was already an echo they did another one for some reason. Good news!! Nothing suspicious was found!!!

The physical therapist worked with Hope today and said she is doing everything she should be at this age so we are all very THANKFUL for that.

Hope is continuing in her fashion show, the Hope Collection. Today she is modeling a cute little "duckie" ensemble. Of course at this rate, what isn't cute on Hope?

Daily Dose: Tuesday, March 10

Hope: day 93

LOOK AT THAT SMILE!!! Isn't she beautiful?!?!

Hope had an overall very good day today. She had a minor bump being that she had some more yellow residuals last night and had high ostomy output, so they stopped her breastmilk feeds. They will wait a day or two then try again.

Hope had a follow up eye exam today and her ROP has improved. Everyone is very pleased with this and they are going to follow up in 2 weeks.

Hope's surgeons and the infectious disease department got together today to discuss Hope's situation. They are thinking that there may be a tiny part of her intestines that are permitting bacteria to pass over to her blood, causing her frequent blood infections. The surgeons think they can easily correct this when they go in for her reconnection surgery, so.... they have decided that they are going to let her current antibiotics take their course (either 6 or 13 days more) and then do her big surgery immediately after. Now, just like every other day, we need the prayers to keep coming because Hope most likely has a really big week ahead of her.

As you can see, Hope is sporting a new selection from the Hope Collection. Everything she wears looks beautiful and it seems as though she likes this ensemble because she is beaming!!

Daily Dose: Monday, March 9

Hope: day 92

Hope had another good day today. She has a new attending doctor that will be taking care of her until March 27th. She had no big developments, which is a good thing, today. She is still on her vapotherm and tolerating her feeds. Hope seems to be struggling a little to digest her feeds, at least more so than the last time her feeds started back up. But the doctors are still pushing forward, so she's still getting her feeds. Hopefully she picks up on the digesting soon.

Hope had some physical therapy today. The therapist worked with Hope for a while and determined that she is actually doing really well, for right now at least. Given all the setbacks and challenges she has had thus far, along with the implications of the PVL, this is really good news. This doesn't guarantee that things will be smooth sailing forever, but for today and right now Hope is doing well and we are all very thankful for that.

Now... for the update on the Biggest Fatty.... today, Hope weighed in at 1820 grams which is..... drumroll......................

more drumroll.................

4 POUNDS!!!!! Way to go Hope!!

As you can see from the picture above, the fashion show continues. Hope is modeling a cute little outfit from Mommy's cousin Kelly and her husband Jerry. Hope said she really likes this ensemble from the Hope Collection and she sends a great big THANK YOU to cousins Kelly & Jerry.

Daily Dose: Monday, March 2- part 1

Hope: day 85

Sorry there was no post yesterday, things were kind of "in limbo" so we wanted to wait until this morning to give a better update.

Yesterday was a very rough day for Hope. Turns out she does have an infection. Yesterday she was very, um, irritable to say the least. She was agitate and made sure EVERYONE knew it. In fact, she even yelled at Aunt Em, no joke. Apparently Aunt Em's departure did not sit well with Hope, but do you really blame her?

Hope does have an infection afterall. The doctors are a bit befuddled with the fact that Hope has had three e-coli infections, but because her urine cultures came back positive they think it might have started there, as opposed to the intestines. The doctors may order a renal ultrasound later this week to see if they can find anything. At this point they are not planning on going in for surgery, thank goodness. If there appears to be something in her bowels they will most likely look for it when they do her "take down", aka "reconnect".

As you can see from the picture, taken this morning, Hope is back on the ventilator. But this is only a small step backwards, not a longterm. Last night her heartrate slowed down quite a bit and she had a few "episodes" so the doctors were concerned that she was getting fatigued. They put her back on a ventilator and she seems to have stabilized out from that. She will probably stay on the ventilator for a few days while she fights off the infection. She is doing well with the vent, they have it set at 30 breaths per minute and she is breathing over it at about 50 breaths per minute, so that is great.

It is also very good to see her so calm and alert this morning. Yesterday she was so agitated and "combative" that her calm demeanor today is so nice to see. While we do miss the Elephant, for many reasons, this now gives Hope a chance to model more of the Hope Collection. Look for more items int he near future.

Daily Dose: Saturday, January 31

Hope: day 55

And the "Biggest Fatty" award goes to Hope today!! She gained 10 grams so she is now up to 1150 grams. Hope's feedings have now been fortified up to 27 calories/ounce, so we expect fat results from Hope!!! But, as we have learned, Hope will do things as she pleases at her own rate. So we will just wait and see what that entails.

Today was Daddy's day to snuggle with Hope and he had a very good time. Which included hearing Hope cry some more and hearing her have the hiccups. Who knew that such a little girl good have such loud hiccups?? G'ma R got to take Hope's temperature today and change her diaper. I don't think any grandma has ever been more excited to change a diaper, but hey, it's the little things in life that count.

Today Hope sends a big THANK YOU to Cindy Hutchison's sister, for making the beautiful booty seen on her left foot in the picture above. Hope only has one on right now because her other foot, as you can see, is taken up with some sort of a monitor. But... Cindy's sister made her a full set of matching booties and a matching hat AND another set of booties, matching hat and a beautiful blanket. Thank you so much for your genorosity and thoughtfulness. Hope definitely appreciates having a warm foot, hopefully she'll have 2 warm feet soon!! The Hope Collection is really starting to bloom, just in time for the upcoming spring fashion season.

Daily Hope: Monday, January 26

Hope: day 50

Hope: day 50

Hope had another great day!! She managed to snuggle with Mommy for a few hours, which is always a good thing for all involved. Her feedings were increased to 11ml and she seemed to be tolerating that well. The feedings are definitely making a difference since today when Hope was weighed she came in at 1120 grams, which is about 2 pounds 7 ounces. She weighs a whole pound more than when she was born!!!

Hope was not extubated today, as the doctors had originally thought might occur. She just wasn't ready to do all the work on her own yet, but that's ok. She'll let them know when it is time. She has to gain weight more rapidly first.

Hope's platelet count increased on its own since yesterday!! This is great because it is the first time since she had an infection that she regenerated her own platelets, so no infusion necessary today!

As you can see from the pictures, not only is Hope looking more "baby-like" (as many people have commented) but she is again sporting part of the Hope Collection. This hat has been worn before, but is making another appearance. The lovely pink knit hat is trimmed with pink fuzz stuff (yes, that is the technical fashion term) and was made by Hope's favorite RT, Peggy. Another big thank you to Peggy for keeping Hope clothed!

In other news... Hope seems to be inspiring to others. As everyone knows, Hope Vivian (Vivian Jr) had a bowel obstruction very early in her life and then had to have surgery. Well, today it appears that Vivian Sr (Hope's Great-grandma Anderson) also has a slight bowel obstruction, or something of the sort. Great-Grandma Vivian is spending the night in the hospital so please keep your prayers with her tonight since we can't be there. Aunt Em talked to Great-Grandma tonight and gently informed her, as only Aunt Em can, that only one member of the family is permitted to be in the hospital at a time and since Hope already had dibs on hospital duty, Great-Grandma WILL BE GETTING BETTER SOON!!! Great-Grandma said she understood and promised to do her best, which she better follow through with her promise or Aunt Em will have no choice but to go "shape her up". And nooooo one wants to see that, trust me on that one.

Daily Hope: Saturday, January 24

Hope fights

"Aunt Em!!! I can't take the paparazzi anymore!!"

Hope: day 48

Hope being held by Mommy with Daddy, Grandpa Robinson, G'ma Robinson & Aunt Em

Hope & her Mommy & Daddy

Hope: our little ladybug

Hope & her Mommy

Hope: day 48

Hope's FACE!!!

Hope & Mommy

Hope: day 48

Hope: the dancing queen

Today was a great day for Hope!! Hope now weighs 2 pounds 6 ounces!! Rather "full" or "healthy", but not "fat" or "plump". She is quite the character. She was fairly active this morning, and part of that was captured on film (see the video above). Hope is currently filming for the release of her upcoming music video. Stay tuned for that in the future....

Hope spent about 3 hours snuggling with her Mommy today. Hope maintained her body temperature and all her breathing was very regular and good. In fact, everything was better when she was snuggling with Mommy as compared to just chillin' in her isolette.

Hope had her tape changed and new tubes and such adjusted. So we had a chance to see her face again!! And put on a new pink fluffy hat (made by Peggy the RT). The pink hat goes very nicely with the new blanket she is sporting. The Hope Collection is really starting to shape up.

Hope got to hear lots of good stories today. Aunt Em told her all about the Inauguration of the 44th President of our lovely country. Aunt Em had the opportunity to travel to Washington, DC and view all the festivities surrounding the inauguration. It was a pretty incredible experience. Aunt Em told Hope how everything she saw reminded her of Hope, partially because Hope's name was plastered around the City. Being around such a large group of people who all believe in the same thing and are there for the same reasons, that is pretty amazing. Aunt Em got chills on numerous occasions, just seeing the American flag waving, hearing the President's Inaugural address, seeing the motorcades, and on and on. Hope kind of tuned out when Aunt Em started talking "shop" about politics and platforms and executive orders. But one day I'm sure Hope will understand it better, or at least appreciate it.

We are all so thankful for the good days that Hope has been having and pray that they will continue. Hope is getting so strong and looks so good.

Daily Hope: Thursday, January 22

Hope's looking at you

Hope is getting bigger

Hope had another good quiet day today. Not a lot was going on. Pretty sure she was keeping it calm and saving up her energy for tomorrow when G'ma and Aunt Em arrive. There will be party time in the NICU tomorrow night!! Lots of catching up to do.

Hope has been handling her feedings well and is up to 8ml every 3 hours. So she should continue to beef up! Her breathing has been maintaining so she continues to get strong!! Mommy was able to hold Hope again today so they are continuing to bond.

Another thing that Hope did today for the first time was to move her head from one side to the other. This may seem like such a miniseries thing but it is HUGE for Hope. That means that her muscles are growing and developing and that she is getting antsy. Again, pretty sure she wants to get out of the isolette and play, but not quite yet.

There will hopefully be many more pictures tomorrow, and hopefully also more on the fashion show and the Hope Collection.

Daily Hope: Friday, January 9

Hope: day 33

Hope LOVES her pacifier, when she got it today she threw her hand up and said: "SCORE!"

Hope: day 33, caretime with mommy & daddy

Hope's foot is still a little tiny, but it's cute (and I don't even like feet)

Hope: donning a new bunny hat, posing for the camera

Hope: day 33

Hope & her pacifier

Hope's new Bling!

Hope's newest hat, another creation by Peggy

Hope got ANOTHER new hat today from her favorite RT, Peggy. As you can see, she is donning the new addition to the "Hope Collection", coming soon to a NICU near you. The bunny hat has little bunny ears that are knit in and then tied with bows. It is INCREDIBLY adorable, and Hope obviously LOVES it! She tried to hippity hoppity around the NICU today, but she couldn't get out of her isolete, bummer. She also got a blanket change so her new blanket is pink and matches her hat. Always fashionable and practical at the same time.

Hope had a good day today, her calories were increased, still working on beefing her up. Hope also got another blood transfusion today, so tomorrow she should be READY TO GO!! As you can see from the pictures, she LOVES her pacifier. She loves it so much at times she gets so engrossed in "sucking" that she forgets to do the other important things, like breathing. So we have to work on multi-tasking, she'll catch on soon.

Hope is looking so good and especially snuggly lately. Everyone can't wait for her to be able to be held and to snuggle up in our arms. Her favorite position to lay in is on her tummy with her little butt stuck up in the air. She snuggles down, her arms tucked in, her butt in the air, and her unstuffed teddy bear right next to her. And she has the most beautiful face in the world, a peaceful and blissful face that knows none of the problems the world faces outside her little isolete.

Another highlight to Hope's day today was the added "bling" to her space. Special thanks to Aunt Em's co-worker Julie for the bling. Hope was definitely missing something, now it feels like home =) THANKS JULIE!!!!

Aunt Em read Hope another story today. We read the story of David & Goliath and how David was sooooo small and so underestimated, yet he conquered the big bad giant Goliath. Hope was telling Aunt Em how she's going to conquere whatever big bad giants come her way. I'm glad that Hope is going to fight the problems off because sometimes I feel like I'm useless and helpless, but with Hope here, there is no fear!!!!

Aunt Em is rating today another solid 7. There weren't any major progressions but good maintenance, so that we are thankful for.

Now for a personal note from Aunt Em: while I spend limited time with my precious Hope, and I have yet to hold her hand or give her a hug, just being with her is amazing. I sit next to her and she radiates hope (yes, pun intended!!!). While there are lots of things that we don't plan for, in fact, lately NOTHING is planned for, that doesn't make it bad. I'm again reminded that our plans are not the plans that will happen or should happen. Given, we can control some things, like Hope's AMAZING wardrobe, but beyond that it is really not our's to control. And so again tonight, on this Friday night in my parents' apartment/house/hotel, I lean on Hope for understanding, an understanding that is beyond my current abilities but I know that someday we will all finally realize the true reasons for today.

Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out. - Vaclav Havel