Daily Dose: Friday, August 28

Not a whole lot of new things for Hope today. She had a good day. She took a nap in her bouncy chair by the window, sat in her kid kart, played on the floor and spent lots of time snuggling with mommy & daddy.

Hope wants the rainy cold weather to get better so she can venture outside again!!

Daily Dose: Thursday, July 23

**disclaimer: Hope's Mommy & Daddy moved into their new house but do not have an internet connection yet, so Aunt Em is not being supplied with daily pictures

Hope's bronchioscope is schedule for bright and early Monday morning. She will be put under general anesthesia so they can get a good look at her airway. She still is having a lot of episodes. The ventilator changes and medicine changes don't seem to be doing much good. We are all praying the bronchioscope will give some insight.

Besides preparing for her big tests, Hope has had a very VERY busy few days with lots of family visiting. On Wednesday, Hope got to cuddle with her Great-grandpa Holtz and Great Uncle Phillip. She also got to meet Aunt Kim and Great Aunt Alice for the first time!! Then she got to spend time with Grandma & Grandpa Holtz. Today she got good snuggling time in with Mommy, Grandma Holtz, Grandpa Holtz, Aunt Kim and Daddy!! A normal baby would be all snuggled out but Hope is looking forward to more tomorrow!!

Daily Dose: Tuesday, July 14

Today was not a good or bad day for Hope, just a day. She was restless last night until about 1am when she finally fell asleep and then slept soundly through the rest of the night.

Today she still had a large number of desat episodes. We are all hoping and praying that we can find a solution to this because she probably won't be able to come home to her new house until the episodes are resolved.

Hope got to snuggle with both Mommy & Daddy a bit today and fell asleep before they left for the night.

Daily Dose: Sunday, June 21

Hope had a not so comfortable day today. She had a great morning until Mommy & Daddy got to the hospital. At that point, Hope gave Daddy a special "Happy Father's Day" gift by going through a bad brady and desat, promptly followed with two more events within the hour. Not exactly the Father's Day gift Daddy was looking for.

The pulmonologist decided that it would be best for Hope not to try her bottle feeding again until after she has her swallow study on Tuesday. Based on the results of her last chest xray, it seem that she is aspirating a small amount of the feedings into her lungs, but we won't know for sure until after her study.

Hope looked pretty restless throughout the day and appeared as though her tummy hurt. As Daddy held her, Hope seemed to calm down and be on the upward swing.

Grandma and Grandpa Robinson visited Hope this afternoon and Hope snuggled with Mommy & Daddy today.

Daily Dose: Saturday, May 16

Hope had an uncomfortable day today. This morning she was feeling good and snuggled with Grandma & Grandpa R, but then she got a little agitated. After a bit Hope's nurse checked her temperature and realized Hope was running a fever. So the drill started with time and tylenol and eventually Hope's temperature came back down to normal, but the doctors had still ordered the usual "fever" workup: cbc, blood cultures and urine cultures.

Hope's CBC came back this afternoon showing elevated level of white blood cells which is a good indication of infection. These results combined with Hope's earlier temperature spike caused the doctors to start an IV in her arm and put her on numerous antibiotics. If Hope's cultures return growth over the next few days they will narrow the antibiotics down to the ones that target her suspected bug. In the meantime, Hope just doesn't seem to be feeling very good. She is restless and exhausted. Hopefully she will get a good night's rest and feel better tomorrow morning.

Hope had a special visitor today: Bernadine Johnson. Rumor has it that Mrs. Johnson tried to put Hope in her purse to take her back to Fremont with her, but when Hope wouldn't fit, instead she decided to give her some beginning piano lessons, starting with hand positioning.

Daily Dose: Wednesday, May 13

Hope had a pretty quiet day today. She had great blood gas this morning so they continued on the plan to wean her off the ventilator and weaned her pressure down one more notch. She is still very competitive in the Biggest Fatty competition, she is up to 7 pounds 8 ounces!!!

Yesterday the unit was closed when Mommy & Daddy got back from the G-rant so Hope had to make up for lost time today. She snuggled with both Mommy & Daddy and then she lounged in her boppy, such the life!!

Yesterday when Mommy & Daddy got back from the G-rant the unit was closed, so she had to make up for lost time today.

Daily Dose: Sunday, May 10

Hope had a rather uneventful day today. She was a bit agitated this morning, which ended up being that she just wanted to snuggle, can't blame a girl for that!! While Mommy & Daddy were at lunch, Hope snuggled with her nurse, Ariana, and that calmed her right down. Seeing as how Hope was in the snuggle mood and Daddy was able to go back in and see her, Hope and Daddy snuggled for quite a while, making up for lost time while Daddy was sick. Hope didn't forget it was Mother's Day, and saved some snuggle time for Mommy at the end of the day.

Tomorrow, Monday, Mommy & Daddy start trach training. They have to take two classes and then they will start doing the trach changes, another part of the process in getting Hope (and Mommy & Daddy) ready to come home.

Daily Dose: Saturday, May 9

I dare you to find a cuter baby!! Impossible!!

Hope had a great day with Mommy today. Grandma & Grandpa R stopped in to see Hope this morning but then headed back home to the G-rant for a couple days. Daddy was feeling under the weather today so he wasn't able to visit Hope. We are hoping he'll be feeling better tomorrow and will be able to go see Hope.

Hope was doing her "workout" today. She practiced her head control by sitting up and playing with Mommy for a bit, but that was tiring work so then she just snuggled in and took a nap in Mommy's arms. Pretty sure they both enjoyed that nap equally.

Hope continues to do well in the Biggest Fatty competition. She is now up to 3310 grams, which is 7 pounds 3 ounces!! Good work Hope!!

Daily Dose: Friday, May 8

Hope was not a happy camper today. She started off the day with a temp, spiking at 103! Her nurse unbundled her and took off her warm clothes, then gave her a nice wipe down with a cool cloth. Within an hour she had cooled back down to around 97. The doctors were worried she might have another infection, but a blood work up showed nothing out of the ordinary. It is possible she just got overheated. Since she didn't have any other temperature spikes the rest of the day it is evident that Hope will need to learn from Aunt Em how to soak up the sun without overheating (aka Aunt Em & Hope go on vacation and Aunt Em shows Hope the ropes of the beach).

Hope had a chest xray this morning and that looked clearer than it has in quite some time. Since it was so clear they were able to notice somethings that were different. her diaphragm is higher on the right than it should be. They weren't sure if this was due to pulled muscles or nerves, internal organs pushing up on it, or if there was something wrong with her diaphragm. They ordered some extra imaging to see if her diaphragm was moving normally. The imaging showed that her diaphragm is functioning normally, which is great, so at this point no one is too concerned about it causing problems. It might be due to muscle weakness and may correct over time, or it might just be the way Hope will always be, perfect in her own way =)

Grandpa & Grandma R were able to see Hope again today because the hospital was reopened, finally. They both took advantage of this with some good snuggling.

Daily Dose: Tuesday, May 5

Hope had a good day today. She had great blood gasses which meant the doctors weaned her ventilator settings down slightly. She also went up to full feeds as well, which is 55ml every three hours!

Hope had her last eye exam today. It did not show any real improvement, but Hope is now old enough to be past the risk of ROP.

Hope got to snuggle with Mommy today and you can see how comfortable she was in today's picture.

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: Saturday, April 4

Hope looking wide awake (even though it was 10pm)

Hope wasn't happy when we told her it was bedtime

Aunt Em & Hope, snuggling!!!

As you can see, Hope had a BIG day today! Or, better put, Aunt Em had a BIG day today!! That's right, Aunt Em FINALLY got to snuggle with Hope. After a very long day, at about 9pm tonight, Aunt Em and Hope made their connection. It was a love connection. Hope was trying to convince Aunt Em to join in her "getaway plan" but Aunt Em explained to Hope that an escape at this point, no matter how fun, would not be the responsible thing to do. Hope's Mommy agreed.

Hope had a good day today. Her feedings went well. She snuggled with Grandma & Grandpa R this morning and then with Aunt Em & Mommy tonight.

While Hope was snuggling with Grandma & Grandpa R, Mommy & Daddy were working very hard to pack up their house and load it into a moving truck. Hope's family wants to say a BIG thank you to neighbors Drew & Jenna (and their friends), Pat & Jennifer, and Aunt Terri for coming over and helping Mommy & Daddy get things ready to move to Grant. Hope isn't quite ready to leave the hospital, but when she is everything should be ready for her, waiting in Grant. Everything went very well today and we are all very thankful for all the helping hands that made today a much better day!!

Hope is sleeping fast as she looks forward to ANOTHER day of snuggling with Aunt Em tomorrow, oh, and Mommy & Daddy too.

Daily Dose: Tuesday, March 31

Hope had another great day today. She was weaned on her ventilator settings and has been having great results with her blood gasses. Since she is one week out of surgery the nurses are trying to cut back on her sedation so she is awake more time.

Hope didn't take the feedings so well last night, so they were stopped, for now. Feedings will be tried again sometime soon. Hope's hematocrit was low as well and there were a few "episodes" so the doctors gave her a blood transfusion which should perk her up.

Hope got to snuggle with both Mommy & Daddy today. She is now up to 2520 grams, which is 20 grams up. She also has turned out to be quite the pisser. She had her heaviest diaper ever.... 132 grams. That is analogous to a 180 pound man making 5 pounds of urine in 4 hours.

Hope appears to be getting sick of her ET tube, finding more problems with that than with her belly. Hopefully the ventilator is gone in the next few days so we can get that ET tube out!!

Daily Dose: Saturday, March 28

Hope had a very stable day. Her tummy is a little swollen but that is normal during recovery from surgery.

The big news for the day....... Hope had a poo today!! Daddy got to change his first poopy diaper (with many many more to come in the future). Daddy couldn't believe how excited he was to see poop! It means that something is working inside Hope.

Hope maintained the same weight as yesterday, which is okay after her big gain yesterday. Today she got to snuggle with BOTH mommy and daddy, which was the first time since her surgery!!!

Daily Dose: Thursday, March 5

Hope: day 88

Hope had another good day. Her ventilator rate (breaths per minute) were lowered in hopes of "sneaking" her off of it in the next few days. They started her on small breastmilk feeds again but stopped after the first one because she wasn't sure she was ready to eat again. But....

Hope continued to gain weight!!! She is not up to 1760 grams (3 pounds 14 ounces)!!!! She is really taking the Biggest Fatty competition seriously. So glad she is competitive!!!

Both Hope and Daddy were feeling better today so they snuggled for quite a while. They were both VERY happy to spend time together.

Daily Dose: Tuesday, March 3

Hope: day 86

Hope had a very busy day today. She didn't end up having a renal ultrasound yesterday, but instead they did a cardiac ultrasound. The ultrasound showed an "artifact" but the radiologist thinks it is just a shadow from her ribs. The abdominal and renal ultrasounds today showed no abscesses and no pockets of infection. Her cranial ultrasound showed no changes, which means it has been stable for 8 weeks now!!

Hope had another eye exam today. The doctors saw she has stage I ROP (Retinopathy of Prematurity). This is technically described as "mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression." The ophthamologist says they'll keep watch on it but is not worried and fully expects her to outgrow it (as over 90% of kids do).

The biggest fatty today is...... Hope, weighing in at 1730 grams (3 pounds 13 ounces)!! Hope snuggled with Mommy today which everyone loved because Hope hasn't been able to snuggle in almost a week. Hope was more awake and alert and, thanks to all the prayers, seems to be feeling a little better all the way around. Keep the prayers coming!!!!

Daily Dose: Friday, February 27

Hope: day 82

Hope had a quiet start to the day today.  She wasn't feeling the greatest, kind of quiet and not very active.  Aunt Em came for a surprise visit, well surprise to Hope at least, and when seeing Aunt Em didn't even perk her up.... well, Hope was obviously not feeling good.

After Hope snuggled with Mommy for a little while the doctors and nurses decided to review some of Hope's blood work and found that some of her levels were extremely low, and she needed another blood transfusion (she hasn't had one in a while).  We hope the blood will help Hope perk up a little bit so that Hope is ready for party time, I mean, errrr, "play time" with Aunt Em tomorrow.

Hope might have another infection of somesort so they are trying to nip that in the bud by starting antibiotics.  We look forward to seeing a much more active Hope tomorrow.

Another note......

Hope's family received a BEAUTIFUL little wooden stool with Hope's name on it.  We are all very grateful but...  we don't know where it came from!!  No name and no return address.  So hopefully the anonymous donor is out there because we would all like to give a great big 

"THANK YOU!!!!" to whomever the very generous and thoughtful donor is.

Daily Dose: Thursday, February 26

Hope: day 81

Hope continued to be on the positive weight gain, weighing in today at 1590 grams, 3 pounds 8 ounces, which is now 2 pounds heavier than when she was born!!!

Hope got to snuggle with Daddy today for two hours. She is still on a CPAP of 6, but is handling it well.

Hope had a quiet day, which is great, and word on the street is she is resting up for a very exciting visit tomorrow!!!

Daily Dose: Tuesday, February 24

Hope: day 79

Hope: day 79

Hope: day 79

Hope: day 79

Hope: day 79

Hope had another great day today. She had no episodes, so this is at least 5 days without any episodes!! The doctors are thinking about weaning down Hope's CPAP pressure. Currently she is on 7 but they are thinking they will wean her down to 6 within the next few days. If Hope handles that well then they will continue to wean to 5. If THAT is handled well for a few days then the doctors will switch her over to vapotherm, a nasal cannula supplying oxygen that is humidified and heated.

Hope gained weight today!!! She is now up to 1540 grams, 3 pounds 6 ounces. She is really striving to be the biggest Fatty!!

Other than that, Hope got to snuggle with Daddy for 2.5 hours today and Mommy was able to take some great pictures of Hope's face without any tubes or her "trunk" or CPAP hat on! ISN'T SHE AMAZING!?!?!

Daily Dose: Monday, February 23

Hope: day 78

Hope had a good day today, a quiet day. The report from Mommy said that Hope is still adorable, still in her hat (as you can see in the picture), still adorable, still weights 1520 grams (same as yesterday), and is still adorable.

Apparently Hope really IS the most adorable baby in the world!!!!!

Mommy & Daddy weren't able to spend much time with Hope today because another baby was having some complications so Hope's module was closed. The doctor's rounds allegedly went smooth. After Mommy & Daddy got to get back with Hope she was able to snuggle with Mommy for two hours.