Saturday, January 31, 2009
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.
Friday, January 30, 2009
Hope had another quiet day today, and quiet usually means good. She is now on full feedings, which are 20 ml. While she is eating to her maximum capacity, she didn't gain any weight today so she is still at 1140 grams. But that's ok. Hopefully with an increased nutrient enriched feeding she'll pick up on the weight soon.
Today was Mommy's day to snuggle with Hope, and it was great, per the usual. The phrase "She is just so cute" has been said on more than one occasion today. Everyday with Hope is a great day, but these days when she is able to snuggle and breathe on her own, so incredible!!!
Hopefully tomorrow will bring "the Biggest Fatty".
Thursday, January 29, 2009
Hope is loving being a Ninja with her CPAP mask. She is definitely enjoying the freedom of breathing on her own. Her oxygen levels are down to 28%, which is even less than she was at yesterday!!
Since Hope was doing so well breathing, her feeds were increased to 17 ml per feeding and she is gobbling it all up, so hopefully she'll be gaining weight more rapidly. She weighed in today at 1140 grams, 10 grams more than yesterday. Yesterday she was weighed with her CPAP on but today she was weighed without it so she probably did gain more weight today than just 10 grams. Hope doesn't know it but she is competing in "The Biggest Fatty" competition, against herself. So her goal weight for tomorrow is 1175. We'll see if she can make her goal weight and stay in the game.
Hope got to snuggle with Daddy today. AND.... Mommy & Daddy got to hear Hope cry for the first time when she was out snuggling. They said it was a tiny little cry but was music to their ears!
Hope is looking so beautiful without any tubes or anything and just her beautiful face with her big eyes wide open for the whole world to see!!
Wednesday, January 28, 2009
As you can see... Hope was extubated today!!!! Which is fantastic! She is sporting a new "ninja" headgear. Ok, it's really a Cpap mask. The mask eases her breathing process but she is definitely breathing on her own, no ventilator necessary!! Apparently when Hope was extubated and taken off the ventilator, she was sure she liked her new mask. But... like the brilliant baby she is, she quickly realized that the mask was far better than having a tube down her throat. Her breathing has been great, in fact, even better than on the ventilator. When she was on the ventilator it was kind of like she could only breathe through a straw (the tube) but now she can open her whole airway and suck in all the good air!
Hope was busy breathing on her own today, so her feedings were not increased. The nurses also wanted to make sure that Hope was concentrating on breathing, so Daddy didn't get to hold her as planned, but he'll make up for it tomorrow.
Hope weighed in today at 1130 grams, which is a heavy 2 pounds 7 ounces (if Aunt Em's online conversion is accurate). While it is only a 10 gram increase from yesterday, that's ok because she was only weighed once and since she is weighed in her isolette, it isn't an exact measurement anyways. So hopefully tomorrow will bring a more accurate, and higher, number.
Overall a good day for Hope. Her lungs are breathing away on their own, and I'm sure she feels liberated!!
Tuesday, January 27, 2009
Hope decided to take after her Aunt Em and begin her traveling at a young age. Today was full of travels and adventures for Hope. She normally resides in Mod 2, however, due to some cleaning in Mod 2, Hope traveled over to Mod 5 to hang out with some new babies for a bit. She liked the change of scenery but was definitely happy to be back at home in Mod 2. Because she was so busy traversing the NICU she didn't get a chance to snuggle with Daddy today, so hopefully he'll get his turn tomorrow.
Also, tomorrow may be extubation day!! Today Hope's vent settings were lowered in preparation for a possible extubation and she took it in stride. But, as always, this is up to Hope, not us or the doctors, when she'll be extubated. So we'll see if tomorrow brings the extubation or if she is going to continue riding the vent for a while.
You can see from the picture that Hope is continuing to "fill out" (if that is the politically correct way to say it). Due to the adventures today Hope hadn't been weighed before Mommy & Daddy left for the night, but she looks a bit more "full" in the picture at least. We'll have an updated weight tomorrow!
An update on Great-Grandma Vivian... good news is she doesn't have a bowel obstruction!! Which means no emergent surgery or anything. She does, however, have an infection of some sort. So she stayed the night at the hospital last night and again tonight. Apparently she is overly jealous of Hope in her isolette because Great-Grandma Vivian was in isolation today as well! Apparenty Great-Aunt Dawn had to put on a gown before she was allowed to go into the room, which I can only imagine is similar to Hope's Mommy & Daddy putting on a gown before they hold her. So basically... Great-Grandma Vivian needs to quit trying to be like Hope so much and go home already! Thanks again for all the prayers for both Great-Grandma Vivian (aka Vivian Sr) and Hope Vivian (aka Vivian Jr).
Monday, January 26, 2009
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.
Sunday, January 25, 2009
Another good day today for Hope!! She is 7 weeks old today! So hard to believe that it has been 7 weeks already!!!
Hope spent a few hours this afternoon snuggling with her Daddy, which she loved, but had to cut it a little short so the nurses could take care of business in the NICU. Hope also got to hold Aunt Em's hand for the first time today!!! At first Hope was a little less than impressed, but eventually Aunt Em had to pry Hope's hand off of her finger, but only because Aunt Em HAD to drive back to Chicago.
Hope continued with her feedings today and handled those well. Tomorrow could potentially be a big day. Hope may be extubated, but we just have to wait and see. It isn't really our timing that we are going on, but Hope's. She does keep trying to pull her tubes out, but we'll see if she is really ready. Being a baby is very hard work, remembering to breathe, digest, breathe, sleep, breathe. Lots of hard work. At least being cute comes especially easy for Hope!
While the position isn't EXACT, you can see from the last picture that was posted above and compare it with the one below, you can really see just how much Hope has grown and just how well she is doing. And also you can see that now her little tiny diapers actually fit!!!!
Saturday, January 24, 2009
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.
Friday, January 23, 2009
Hope had a good day today. She started off her morning with some good snuggling time with Daddy for a couple hours. Later in the day she had to have a new PIC line put in. The PIC line was put in through her foot/leg and will provide an access point for medications, nutrients, etc. Hope appeared to take her newly placed PIC in stride.
As part of Hope's growing process she has begun to "fill" out. Her tiny little ladybug butt now has cheeks, as opposed to flatness. Very tiny little buttcheeks, cute ones at that.
Hope also was VERY excited today because Aunt Em and Nanabug (Grandma Robinson) came back to visit. They spent just a few minutes with her when they got in tonight, but noticed how much she has grown. Apparently Aunt Em has yet to learn complete social graces as it apparently is inappropriate to tell a newborn baby how fat they are. But seriously, I meant it in a good way!!! Anyways... Hope got over it, after many minutes of therapy and apologies, and then Hope and Aunt Em had some good time together. Aunt Em began to tell Hope all about her adventures, beginning with Mexico. Hope didn't really care about Mexico, but is already looking forward to hearing all about the Inauguration during story time tomorrow.
Due to a recent request, a few tidbits of information regarding Hope's Mommy (as provided by Hope's Daddy):
1) She was born a preemie too
2) She was in the NICU too
3) She is not "fat"
4) She is still adorable
Thursday, January 22, 2009
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.
Wednesday, January 21, 2009
Hope is back on her feeds, but she is pacing herself, so they are not as big as before, but if she tolerates them well then bring on the feeds!
Hope loves to cuddle and got to spend a considerable amount of time cuddling with her Daddy today.
In other news..... Aunt Em is back in action and I would like to thank Hope's Mommy for keeping everyone up to date on her growth and for making great posts!!! I was worried I would be without a job, so I guess it's a good thing I kept my day job.
Hope is fairly excited because on Friday Aunt Em and G'ma Robinson will be coming back to visit!! Aunt Em will be driving up to Grant to pick up G'ma on Thursday and then drive her down to Indianapolis on Friday so she can be with the rest of the family. Hope doesn't know it yet but Oliver, her pseudo-cousin (Aunt Em's dog), will also be making the venture to Indianapolis. Oliver was very excited until he found out he won't get to see, or lick, Hope. But he is still excited to spend so much time with G'ma in the car!! (Please pray Oliver makes it home safely after 6 hours in the car with G'ma)
Tuesday, January 20, 2009
Today was a very, very big day for Hope. She had a lot of things happen, including her weekly cranial ultrasound.
Bad news first: Hope's blood cultures from the 17th ultimately did show continued infection, causing the doctors to decide to remove her central line. This has been a "semi-permanent"IV site that is located in her neck to allow her to easily receive blood products, medicine and nutrition. Having it removed was not a big deal for Hope, but it means 2 things: 1. For the next 72 hours or so, the nurses will have to use other IV sites to give Hope what she needs, likely meaning more pokes, and 2. The vein in Hope's neck that this IV was in will no longer be usable. It is possible that the surgeons will install a new central line next week.
For the good news: everything else!!! Hope had her eyes tested for the first time, and the doctors thought she was developing normally. Also, her echocardiogram came back this morning showing no signs of PDA (hole in her heart), so no heart surgery was needed! This was a surprise to the doctors, as well as for us.
Most importantly: Hope's cranial ultrasound came back showing that her damage and swelling was stable. This is wonderful news, and two weeks of stability are good all the way around. We are very, very thankful for this news, as well as for all of your prayers.
As you can see in the picture, Hope is indeed sporting her new Inaguration Day hat. She was very excited and proud today, and happy to be able to participate in the festivities.
Mommy and Daddy were so thrilled with today's news that they went out tonight to celebrate. Hope thanks everyone for their continued thoughts and prayers!!
Monday, January 19, 2009
Sunday, January 18, 2009
Hope has spent the weekend busily fighting off an infection. The good news is that so far today her blood cultures have not shown any further infection. If they remain clear until Monday morning the doctors will not have to remove her central line as they previously thought they might.
However, Hope has had some other issues this weekend. Her diastolic blood pressure (the second, lower number) has been lower than the doctors would like. That coupled with the fact that her urine output had dwindled a bit, as well as her creatinine levels being slightly elevated, causes the doctors to suspect that her PDA had reopened. This is a blood vessel in her heart that is open in all newborns. It usually closes on it's own in full term babies but often in preemies this doesn't happen. Hope had an open PDA while she was in South Bend but they were able to give her some medication to close the vessel. It's not uncommon for the vessel, however, to reopen. Since Hope has had intestinal issues she won't be able to have another dose of the medication. The doctors plan to do an echocardiogram on Monday to determine if the vessel is open. If it's open, but only slightly they may wait it out to see if it will close on it's own. If it's a large opening Hope will have to have a small surgery to clamp the vessel closed.
On a lighter note, Hope got a pretty new hat from Peggy today. It's a pretty blue with a flower on top and it made her feel very fashionable today.
Hope spent the weekend with her Grandpa Holtz and had a wonderful time with him. She hated to see him have to leave today but knows that he will be back soon to visit her again. She was very excited that he brought her some hats to add to her wardrobe, but her favorite part of the weekend was getting to sit and hold his hand for hours at a time.
Saturday, January 17, 2009
Hope's past two days have been quite eventful. On Friday, her blood cultures came back positive for infection, meaning that she has come down with sepsis. Although she has fought through sepsis twice before (once in South Bend, once here at Riley), this one seems to not be as difficult for her. She has been able to maintain her good respiratory status and blood gas levels for the pest two days. Her platelets, however, did dip down again on Friday so she received another platelet transfusion.
Hope's doctor's are concerned that the infection may be coming from Hope's central veinous line, which she had had put in surgically a few weeks ago. If her cultures do not come back negative for infection tomorrow, the doctors will consider removing it. This would make it harder to provide Hope with all of her nutritional needs, blood products, and medicines because only peripheral IV's could be used, but would be worth it if it would end the infection and make Hope feel better.
While all of this has been going on, Hope has been busy cuddling with both mommy and daddy. Daddy was able to hold Hope for two hours on Friday, and Mommy for four hours on Saturday. Hope seems to be tolerating this very well, and Mommy and daddy look forward to do this on a regular basis now as long as she remains stable.
Although Hope's Grandpa Holtz is leaving tomorrow, her Grandma and Grampa Robinson will be coming to see her - she has missed them, and looks forward to seeing them again!
Thursday, January 15, 2009
Tuesday, January 13, 2009
Monday, January 12, 2009
For those of you who have waited anxiously for an update, Emily apologizes. Her trip to Indianapolis proved not to be the tropical destination she had hoped for so after making sure that Hope got some bedtime stories from Christmas Bear and Kwanzaa Zebra, she boarded a plane and skipped the country. Emily envied the warm and humid atmosphere of Hope's isolette and so she has decided to spend a few days in sunny Mexico. She has promised Hope that she will bring back lots of new stories about the beach, sun bathing and cute cabana boys. So the blog is being written by a ghost writer (Hope's Mommy) in her absence.
Hope has had a great couple of days. Her nurse weighed her today and she has gained weight! She now weighs 900 grams - a whopping 1 pound 15 ounces!! They have also taken her off of the jet ventilator and moved her onto a conventional ventilator. This is less support for her and means she is getting stronger.
Hope is now getting all of her nutrition from her feedings, no more IV nutrition. She is tolerating her feedings well, which will help her continue to gain weight. All in all, everything is looking really great for Hope and she's making wonderful forward progress.
As you can see, Hope is sporting a new hat today. It's hard to see in the picture but this hat has a cute red flower on the top of it. She thanks Peggy, her wonderful, thoughtful respiratory therapist for this beautiful new accessory!
Saturday, January 10, 2009
As you can see from the picture, Hope has beautiful blond hair. Hope's hatless head has lots of blond hair. There was discrepancy amongst certain parents as to what color Hope's hair is, but no more questions: it is blond.
Hope had another stable day. Her calories were increased and the feedings were tolerated. Today was a good day.
Hope had visitors, Pat & Jennifer (Pat is a friend of Andrew's from work). Always nice to have a new friendly face at the NICU.
Aunt Em left today, but not in a hurry. Her 35 minute flight turned into over 3.5 hours sitting on a plane. The good news is that Hope now has a new following: United Airlines flight attendants.
Friday, January 9, 2009
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