Sunday, May 31, 2009

Daily Dose, Sunday May 31


Today was a quiet restful day for Hope. She spent the day doing a little bit of all of her favorite things: cuddling with daddy, cuddling with mommy, lounging in her boppy, swinging in her swing, playing with her balloon and sitting up and watching all the people walk by.

Her blood gas this morning was good so her ventilator settings were lowered again today. She appears to be on a good trend and hopefully they will be able to continue to lower her support throughout the week.

Hope weighed a whopping 9 lbs 2 ounces today (4,150 grams). She is now 20 inches long. At the rate she is growing, she will be pushing 10 pounds before we know it!

Saturday, May 30, 2009

Daily Dose, Saturday May 30




Hope spent most of the day today awake and alert. She spent a lot of time sitting in daddy and mommy's laps and looking all around checking things out. She is still very intrigued by her balloon friend and she played with him for a while today.

In order to rule out that Hope's episodes are caused by seizure activity the doctors have ordered another EEG for Tuesday. Hope had an EEG done back in April but it was only over a short duration (15 or 20 minutes) and since Hope slept sound through it the doctors did not see anything suspicious. This time she will likely have a longer EEG test run (up to 24 hours long) in order to catch a larger time period and hopefully see what happens when she has an event.

Hope's blood gas was good this morning but not stellar so they decided not to make any changes to the ventilator settings today. If her gas is good tomorrow they will consider weaning tomorrow.

As you probably all know from reading lately Hope has been growing by leaps and bounds. Today was a big day for her - she broke through the NINE POUND mark!! As if it were even possible for any of us to forget.... Hope was born at 1 pound 8 ounces. She is now over 6 times what her birth weight was!!!

Friday, May 29, 2009

Daily Dose, Friday May 29


Overall today was a good day for Hope. She spent a good deal of the day awake and playing not only with mommy and daddy but with her new balloon. Daddy bought Hope a bumble bee balloon and she loves it! She likes to have it tied to her wrist so it will bounce up and down when she moves her arm. As you can see by the picture she spent a bit of time just staring at her new friend today.

The developmental pediatrician visited with Hope today. They haven't scheduled the swallow test yet because Hope is still pretty sleepy because of the valium. The doctor had some trouble waking Hope up and so they decided to lower the dose of valium she gets during the day in Hope of helping her to be not so sleepy.

Hope's ventilator settings were lowered once again today. She is breathing on her own once again with just the pressure support and air pressure coming from the ventilator. The plan is to wean her down a little further in the next few days.

Hope had such a big weight gain yesterday that she decided to take a break and remain even on the scale today...maybe tomorrow she'll break the 9 pound mark!!

Thursday, May 28, 2009

Daily dose, Thursday May 28




Hope had another good day today. Hope's blood gas results this morning were very good, so the doctor weaned more on her respiratory support. This seems to be going well, and Hope is looking forward to more weaning in the next couple of days.

Tomorrow developmental pediatrics will come to consult on Hope's ability to swallow. If things look good, the doctors will probably order a couple of tests and then, if things still look good, the doctors will clear Hope for breastfeeding!

Hope had no significant events today. Mom and dad are hopeful that we may be almost done with these, as they seem to be gradually diminishing in frequency and severity.

Hope weighed 4,060 grams. This puts her over 4 kilos, which is 8 pounds 15 ounces!!

Wednesday, May 27, 2009

Daily Dose, Wednesday May 27




Another good day for Hope. She was able to do non-nutritive feeding today and tolerated it very well. This should put her on a good track for getting a swallow study on Thursday. We will also reevaluate the valium dosing on Thursday.

The doctors cut Hope's ventilator rate in half today. So far she is tolerating it very well and continues to breath over the ventilator.

Hope spent a lot of time cuddling with mommy and daddy today. She modeled a new outfit from the Hope collection. As you can see she is very ready for summer!

Tuesday, May 26, 2009

Daily Dose, Tuesday May 26




Hope spent most of the day sleeping today. Everyone is keeping a close eye on her to make sure that she is getting enough valium that she is relaxed and comfortable, but not so much that she sleeps all the time. At this point we are going to keep the dosage the same, but monitor her on a daily basis.

Hope spent some time with her physical therapist this morning and they were very pleased with what they saw. Hope has been practicing every day with daddy and mommy and she showed the physical therapist just how well she is doing learning how to hold her head up.

The big news of the day was that the developmental pediatricians started their evaluation of Hope for oral feeding. She was pretty sleepy but they were pleased with what they saw. Hope took a bottle happily and without any trouble. They want her to resume the non-nutritive feedings and if that goes well they will put Hope through a swallow study later this week to assure she is not having any reflux or swallowing issues. Hopefully she will do well with this and she will soon be able to take some of her food orally instead of all by feeding tube as she does now.

Monday, May 25, 2009

Daily Dose, Monday May 25



Another good day for Hope. She spent most of the morning and early afternoon snoozing and saving her energy for playtime this afternoon. Once she woke up she sat and played with mommy and daddy for quite a long time. When she got bored with this she sat in her swing and played until after mommy and daddy had left.

Hope's blood gas was very good this morning. They decided to lower the settings on her ventilator just a bit and Hope tolerated this very well. She didn't have any episodes all day and was able to keep her heart rate and oxygen levels up all day long.

Hope had some special visitors today. Her friends Jody & Peggy Byland stopped by to see Hope. She was so happy to have visitors that she even opened her eyes and woke up from her nap.....for a minute.

Sunday, May 24, 2009

Daily Dose, Sunday May 24


DADDY IS BACK!!!

Hope was very happy to see daddy again after 4 days of missing him. He cuddled with her for a couple of hours, and he told her all about his time in Boston. Daddy brought Hope a book about Wally, the Green Monster, and his travels through Red Sox Nation.

Hope also cuddled with mommy, grandpa R and spent some more time hanging out in her swing. She had fewer episodes last night and today. Hopefully these will continue to diminish in frequency and severity.

Saturday, May 23, 2009

Daily Dose, Saturday May 23



Hope spent a good bit of the day sleeping and resting. Her bottom is still very sore so she lounged around diaper-less with the oxygen on the tush again. Hopefully since they stopped her antibiotics today things will clear up soon.

Once Hope did wake up, she was ready to play. She hung out with mommy, grandma R and granpda R for a while and then the real excitement started. Her nurse got her a swing to play in for a while. Hope wasn't sure what to make of this new vantage point at first. Her next mission was to figure out how and why she was moving without someone holding her...this was all very new and strange.

Hope weighed in at 3830 grams today - 8 pounds 7 ounces.

video

Friday, May 22, 2009

Daily Dose, Friday May 22


Hope had a very good day today. She was much more comfortable over night and had fewer episodes throughout the day today. The doctors are happy with this and don't plan to make any changes to her support over the weekend. Hopefully she will have a couple of restful days and then we can look at weaning her down next week.

The only rough part of Hope's day was that her bottom is very sore. We aren't sure if it caused by the cream they are using to treat it or if she is reacting to all of the antibiotics she is on this week but her bottom was very red and sore today. In an attempt to treat it Hope got a mini spa treatment. She lounged around without her diaper on and had oxygen applied directly to her sore bum. Hope likes this treatment and thinks she will have to continue with spa treatments once she leaves the hospital.

Once again Hope had a great weight gain. She was up to 3,810 grams - 8 lbs 6 ounces!

Thursday, May 21, 2009

Daily Dose, Thursday May 21




Hope was restless last night. Her nurse couldn't get her comfortable for several hours so this morning they decided to increase the amount of valium that she is getting. Hope's mommy and daddy were not happy about this because they don't want to drug Hope any more that she needs and they want her to be as awake as possible not constantly sedated. Everyone finally agreed that we would try the increased dose and see how Hope reacts to it.

Despite the increased valium, Hope was able to get in some good practice sitting up today. Hope likes to sit up and get a change of scenery. She loves to look around at all the machines, lights and people.

Hope is modeling a very cute new pink outfit today. This outfit comes from her good friends the Haveman's - Hope loved dressing up and looking so pretty today.

Wednesday, May 20, 2009

Daily Dose, Wednesday May 20


Hope had a much better day today. She didn't need any sedation all day. She had a few small dips with her oxygen saturations but was able to pull herself back up and out of them.

Hope's bottom is still a bit raw so her nurse ordered up some special "Riley Butt Cream". It has special ointments and painkillers in it to hopefully help her be more comfortable.

Hope has decided to try and make up for all of the days early on in her hospital stay when she didn't gain very much weight. She had another big weight gain today and weighed in at 3,730 grams today - 8 pounds 3 ounces!!

Hope spent some special time cuddling with daddy this morning. Daddy had to go out of town to take care of some business. Hope is going to miss him very much but will try to be on her best behavior until her comes back.

Tuesday, May 19, 2009

Daily Dose, Tuesday May 19


Hope spent a little while chillin' on her tummy last night before she got agitated again. She couldn't get comfortable no matter what was tried. Finally this morning her nurse gave her a dose of valium to try to get her to relax and rest today. This made Hope VERY happy for a couple of hours.

Her cultures still have not grown anything and so the new suspicion is that perhaps she caught something viral and not bacterial. She seems to be feeling a bit better day by day and now is just agitated that she is not feeling all the way better yet.

Hope has reached another weight milestone. She weighed in at 3640 grams today which is just over ..... 8 POUNDS!!!

Monday, May 18, 2009

Daily Dose: Monday, May 18

Hope chilling on her boppy

Finally a position that is comfortable



Hope had a little bit of a rough evening tonight. She was very very uncomfortable. Hope has a pretty bad diaper rash which makes it very uncomfortable for her to lay on her back. The hard part is with her trach, she can't really lay on her stomach. Aunt Em tried to console Hope today and snuggle with her, but Hope wasn't exactly in the mood. I think that was partially because Aunt Em didn't bring Hope any gifts as she had promised, so she wasn't very happy about that.

Mommy finally found a position that made Hope more comfortable. As you can see from the last two pictures above, Hope did not want anything to do with clothing or a diaper. She also was much happier laying on her stomach. Mommy held Hope's head up for a while, then we figured out how to position her head she could rest of a pillow. Hope's night nurse, Beth, suggested putting an oxygen mask near Hope's bottom, where the rash was so bad, to air it out. Hope DEFINITELY liked this. It looked quite silly, but she was happy, so we went with it.

A follow up from yesterday: Hope's RSV test came back negative, not very surprising, which is great.

*Editorial note: Aunt Em (that's me) is going to be off blog duty for about 4 weeks while I do some studying in Europe. Hope's Mommy has promised to keep up the blog while I'm away, however, I will be checking in on things and making sure that everyone is being kept up to date with all of Hope's happenings. Hopefully I don't get written out of a job!

Sunday, May 17, 2009

Daily Dose: Sunday, May 17

video

Hope had her ups and downs today. She had a great morning, was awake, alert and social with everyone. The video is from this morning when she was doing her developmental exercises.

In the afternoon she had more dramatic events and was a bit agitated. They tested Hope for RSV- a respiratory something that babies can get. To do that, she had to be put in isolation. Now, everyone that touches her has to wear gloves and a gown until the test results come back.

Hope is working hard to feel better tomorrow, and the news that Aunt Em is coming for a visit will definitely help her perk up!!!

Saturday, May 16, 2009

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.

Thursday, May 14, 2009

Daily Dose: Thursday, May 14


Hope had a few episodes today, but that is nothing new. She seems to have 2 or 3 episodes a day. Everyone had hoped the trach would put an end to these episodes, but it looks like the lower airway collapse she has might be causing her to have continued episodes. She was not weaned off the pressure support today with the idea that she would stay at their current settings for the weekend to give her a little time to grow and get stronger. She will probably be weaned down a little on Monday.

Mommy & Daddy finished their trach classes today. Now they know the 3 C's of trachs: change, clean and care! They will be doing their first trach change on Monday, hopefully it goes well.

Wednesday, May 13, 2009

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.

Monday, May 11, 2009

A special note

I have not received today's Daily Dose from Hope's Mommy & Daddy so I figured I would take a few minutes to write about some other things. Hopefully I don't overextend my literary bounds.

Today is a very important day in our lives. It was one year ago today that Andrew & Sarah lost their first child at 21ish weeks. At the time it was, and still is in a lot of ways, devastating. I can't begin to imagine what Andrew & Sarah were going through. I was trying to figure everything out and asking why this had to happen to them? They had been married for 8 years, they waited until they were in a place in their lives where they could provide for a family, they had moved back to the Midwest, close to family, Sarah was working from home, every thing was in place, everything was perfect. I just couldn't understand how they could do everything so right and then have their unborn child taken from them without explanation. Well.... God doesn't always give us explanations when we demand them.

A few months later, great news! Sarah was pregnant again! And this time they were going to the doctors frequently and the specialists regularly to make sure this pregnancy would go "normally" and this baby would be perfect. Again, they did everything right. They planned for everything and followed all the instructions. Then in November all the sudden Sarah was on bedrest. Then just a few weeks later I got a call late in the night congratulating me, Aunt Em. I had been woken from a sleep and I was confused. I started crying because I was so happy, but then I realized that something wasn't right. Wait!! It isn't time yet!!! She can't be born yet, she still has to grow!! For all of us it was such a trying night, while we sorted things out, tried to find information and tried to figure out where to go from here. I didn't know her name, but I got in the car the next morning (after I responsibly took a final exam) and drove over to see her, to meet my niece for the first time! On the way there they told me her name: Hope Vivian. It was so beautiful to hear her name and it was so amazing to see her. She was so little but we all knew she was a fighter, and we have all seen just how much of a fighter she is.

A year ago I was asking: why them? What did they do wrong? Today, I'm saying thank you. Thank you for giving Andrew & Sarah and our family another chance. Everything happens for a reason. Yes, it may be cliche but it is a phrase that throughout my life I have learned to live by. I still don't know exactly why things happened the way they did on May 11th, but I do know that if God hadn't taken my little nephew to be with Him before he was born, before he could live on his own, we would never have met Hope. We would never have grown closer (in a special way) as a family. Did I mention we wouldn't have Hope?

While a year ago we mourned a loss, today I am celebrating a beautiful life that has changed my life forever. I still don't know exactly why things happened and I probably never will have an exact answer, but if I had to make an educated guess I would say it all happened for Hope.


A quote from Vaclav Havel that I have learned to love:
Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out.

Sunday, May 10, 2009

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.

Saturday, May 9, 2009

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!!

Friday, May 8, 2009

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.

Thursday, May 7, 2009

Daily Dose: Thursday, May 7

HAPPY 5 MONTH BIRTHDAY HOPE!!!



Hope was a bit touchy today. They decreased her pain medication which meant when she was awake she felt a bit uncomfortable. She has been weaned off the ventilator settings so she no longer gets breaths from the ventilator, just pressure support when she initiates a breath. Her pressure support was taken down one notch today and hopefully will continue to lower the support one point each day and see how she tolerates it.

Hope got some good snuggling time with both Mommy & Daddy. She still hasn't seen Grandma & Grandpa R this week since the hospital is closed down because of the pig disease, oops, sorry, that wasn't very politically correct. Because of the "H1N1 virus".

Today is Hope's 5 month birthday!! In the picture you can see that Mommy is reading a book to Hope. It is a book called "The Night that You were Born", very fitting for this birthday of Hope's. We can't wait to celebrate Hope's birthdays at home, eventually.... eventually.

Wednesday, May 6, 2009

Daily Dose: Wednesday, May 6


Hope was feeling pretty good for most of the day and remained awake and alert for the entire day! Mommy, Daddy & Grandpa & Grandma R took an infant CPR class. The good news is they all passed with flying colors!!!!

Mommy & Daddy met with Hope's developmental pediatrician this afternoon. She was very pleased with the progress Hope has been making. Hope was able to focus on objects and track them with her eyes. Hope also sat up and did very well with her head control. Hope was showing off and even turned to look at the doctor when she spoke to her, which made the doctor pretty confident that Hope could hear her. Mommy & Daddy discussed that Hope had been referred for further hearing testing so the doctor dug a little deeper to find out details. Turns out the hearing test that Hope "failed" was just that she didn't respond to sounds at 35 decibels. The doctor was pretty sure that given all the ambient noise in the room, 35 decibels is very quiet and not surprising that Hope had trouble. Hopefully Hope will do well with her follow up test with the audiologist after she is released.

One thing that Hope needs to work on is getting the social smiling down. Hope was also showing a little tightness in some of her muscles but the doctor showed Mommy & Daddy some things to do to help Hope relax. After 5 minutes of doing those things, Hope was completely relaxed and content so Mommy & Daddy have to make sure they do those things every day to Hope help stay relaxed and loose.

The BIG news for today is that Hope weighed in at 7 pounds 1 ounce today!!! Yes, SEVEN pounds. That is HUMONGOUS compared to when she was born. Way to go Hope!!

video
Here is a little video of Hope looking around

Tuesday, May 5, 2009

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.

Monday, May 4, 2009

Daily Dose: Monday, May 4

Hope had a good day today. Her ventilator rate was lowered and her pressure support was increased. In layman's terms: Hope is breathing more on her own but the ventilator is helping her to take deep breaths when she breathes. She had a chest x-ray today and it looked much better.

The doctors did Hope's first trach change today. The dressings from her surgery were getting a bit smelly. Hope is becoming quite the picky girl, so she wanted those stinky dressings GONE! Hope tolerated the change well. Mommy & Daddy will soon be learning how to do the change themselves. They have to take 2 classes and successfully change the trach 3 times each before they'll let Hope go home. Aunt Em has suggested that they take the class and do all the trial runs this week so Hope can come home, but apparently there is more to it than that.

Sunday, May 3, 2009

Daily Dose: Sunday, May 3


Hope was a bit more comfortable today. She had began to be weaned down the morphine, but she didn't like that very much at all. They went back up on her dosing and then she was very happy. She had one episode, but that was because she was taking care of business, aka pooping. Next goal for Hope: poop without blacking out.

Other than the one episode, she slept most of the day while she recovers from the surgery. Mommy says that Hope is liking her time under the warmer, Hope obviously gets that from Aunt Em and her love of the sun!

Saturday, May 2, 2009

Daily Dose: Saturday, May 2


Hope was a little uncomfortable today. She hadn't had a "number 2" since surgery so she was getting pretty constipated and was NOT happy about it. The nurses gave her more versed and morphine to keep her comfortable and as of tonight she finally had a number 2. Hopefully she will be feeling better soon.

Hope was looking a little bit puffy from the post surgery and her weight was up to 3140 grams.

Hope had a fairly quiet day. Riley is closed to all guests except parents (due to this flu garbage), so Grandma & Grandpa R are waiting patiently to get back in there.

Friday, May 1, 2009

Daily Dose: Friday, May 1


Hope did very well during her tracheotomy yesterday. She is recovering today. As you can see in the picture, for a little while today she didn't have any tubes or tape on her face at all!!! And she's sooooo cute!! She now has her feeding tube back in so she is re-taped, but she is doing well.

Hope's recovery is coming along, with the help of lots of morphine. I know that Hope must be "high" on the good medicine since her Daddy told me that she "likes the morphine more than new clothes." Obviously that is not possible because Hope LOVES new clothes (especially the ones that Aunt Em buys her!!). If only she could talk for herself to set her Daddy straight...

Thanks for all of the prayers, we appreciate everything and are looking forward to coming home, eventually!