Thursday, April 30, 2009

Daily Dose: Thursday, April 30

Hope before her tracheotomy

Hope had her tracheotomy today around 5pm. The procedure went well and she is now on the ventilator, recovering. Hopefully things will go well tonight and she can begin to be weaned off the ventilator. The doctors have her on plenty of medicines for the pain.

It was a rough day, emotionally, for everyone, including Hope. She was crying today but there was no sounds because of the trach. This is something new to get used to.

Special update!!

Hope is scheduled on the "add-on" list to have her tracheotomy today at 2.30pm EST. Please pray that the procedure goes well and that it helps Hope be more comfortable and breathe easier.

Wednesday, April 29, 2009

Daily Dose: Wednesday, April 29

Hope is looking at something interesting

"Did you just say I have more new clothes?"


"This is what I think about CPAP"

Hope had a quiet day today, which we are all thankful for. She had no episodes, gained 20 grams (putting her up to 3070 grams), went up slightly on her feeds and nutritional supplements, and got some great snuggle time with Grandpa R, Mommy & Daddy.

While Hope was chilling today, Mommy & Daddy had a very big day. They had a discussion with the doctors to discuss what happens between now and Hope's discharge, aka "care conference." The doctors are firmly recommending a tracheotomy and Mommy & Daddy have consented to that. It will take Hope a couple of weeks to recover from the surgery. After that the focus will be on weaning her back off the ventilator as she will be on it for surgery, and then determining whether or not she will be able to feed orally. If she isn't able to get most of her nutrition orally, Hope will have to have another surgery to have a G tube put in. That will provide semi-permanent access to her stomach.

Breaking it down.... Hope is going to have a tracheotomy. If she does well with the tracheotomy and feeding, the anticipated arrival home is 5-7 weeks. This is a little bit longer than we had anticipated, but it is not devastating because there is finally a light at the end of the tunnel, a ribbon at the end of the marathon, an exit off the highway, a... (ok, I think you get the point) Please pray for ALL of us that we can find patience with this new knowledge and our extended stay in Indianapolis. A special prayer request straight from Hope: please pray that Daddy can keep his mouth shut and not make a scene for a few more weeks. Apparently Hope knows her Daddy just as well as the rest of us and she's only 5 months old!!!

Tuesday, April 28, 2009

Daily Dose: Tuesday, April 28


Hope had a quiet night and day. Last night they put her on CPAP from a recommendation of the pulmonologist. The thought was that with enough pressure they might be able to keep her airway open and make her more comfortable until a long term solution could be formulated. Well.... as we know from before, Hope DOES NOT like CPAP. She spent most of the night being very agitated and inconsolable. Her nurse, Beth, tried all night long to make her comfortable by rocking her, holding her, putting her in her boppy.... all to no avail. When Mommy & Daddy arrived this morning Hope was still upset. She was kicking and flailing and screaming, in typical girl fashion. Mommy & Daddy asked the doctors to put her back on vapotherm. Once she was back on vapotherm she fell sound asleep and slept most of the day, but do you blame her? Being upset all night is tough work!

Mommy & Daddy talked to the pulmonologist this afternoon. While no decisions have been officially made, it is starting to look more and more like a tracheostomy will be the best thing to help Hope be able to breathe. Tomorrow everyone is sitting down to go over things in more detail and look at a potential time frame for all of this.

Monday, April 27, 2009

Daily Dose: Monday, April 27


Hope had her bronchoscopy this afternoon. The findings of the test were not really surprising.
Hope has a floppy upper airway. When she inhales, the area of her airway above her vocal chords collapses making it very difficult for her to breathe. The good news is the area of her airway below her vocal chords AND her vocal chords all look healthy and normal. So we expect her to begin talking ASAP! The floppiness in her upper airway is something that should improve over time and she will eventually outgrow the problem. The question is...... how long
will this take?

Hope's Mommy & Daddy will be meeting with the pulmonologist tomorrow to go over the findings and determine what to do next. There are a few different options to discuss that will help make Hope more comfortable. One option is that she will outgrow it quickly, and if that is the case she will just be supported with vapotherm or cpap or other respiratory treatments. Another option is that surgery could help. And another option is a tracheostomy.

We are all VERY proud of Hope today. She was a very brave little girl through the entire procedure. She was staring at the doctor's face the entire time he was performing the procedure. It was as though she was memorizing every inch of his face and filing it away that she was NOT happy and did NOT like the strange man sticking a camera in her nose. I advise him to watch out when she gets older because we all know she's going to be feisty.

Sunday, April 26, 2009

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!

Saturday, April 25, 2009

Daily Dose: Saturday, April 25


Hope had a fairly quiet day today. She is looking much better now that she's gotten her blood transfusion. She was asleep for most of the day today. Possibly her body has been working so hard to regenerate blood, keep her heart rate up, and breathe, that now she has the blood she finally let her guard down a little and took a breather... yes, pun intended.

Hope's blood cultures still have not shown any infection, which is great, and as of yesterday her white blood cell count was back in the normal range, so Hope's antibiotics were discontinued today. Hopefully the bronchioscope will be scheduled for either Monday afternoon or Tuesday morning and provide some answers to Hope's episodes.

Hope got lots of snuggle time today, with Mommy & Daddy AND Grandma & Grandpa R.

Friday, April 24, 2009

Daily dose: Friday, April 24

Mommy holding Hope during her EEG

Hope had a very tiring day today. It started with two episodes overnight that were pretty severe. The doctors let Mommy & Daddy know that one of the episodes overnight required bagging to bring her back (always scary) and because of that Hope would be getting a blood transfusion today, hopefully to help her out a bit, and that they want to conduct an EEG to rule out seizures as a possible cause for Hope's frequent episodes.

Before Hope could get her transfusion, the nurse had to do a blood draw to get a CBC, CRP and a "newborn screen" since Hope is now well over 4 months old. This meant multiple pricks for Hope, so by the time all the info for the blood transfusion came back her blood level was EVEN lower!! She did receive blood in the very late afternoon so hopefully she will be feeling a little better later.

As you can see from the picture, Hope had many electrodes attached to her head for about 30 minutes to measure all of her brain activities. The results came in at the very end of the day. Hope is apparently at risk for seizures, but none occurred during the test (which is obviously the case because that's always what happens, or so it seems!!). The kind of good news is that this rules in seizures as a possible cause for her episodes, however the bad news is that it ruled out nothing, which makes Aunt Em think we have made no progress, but they have given some possible causes to the seizures: (1) insufficient respiratory support; (2) neurological issues; (3) reflux (which would add Hope to the list of family members with reflux); (4) low hematocrit, aka blood levels; (5) floppy airway. This used to be the end of the list but NOW we have added...... (6) infection, like sepsis or UTI; and..... rounding out the list...... seizures!!!! This list is not making Aunt Em very happy AT ALL, so I can't even imagine how Hope is feeling about it all.

We are all hoping that we will make more progress next week in ruling OUT possible causes, not ruling IN more. Seriously, shouldn't the list be getting smaller???

Thursday, April 23, 2009

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.

Wednesday, April 22, 2009

Daily Dose: Wednesday, April 22



Hope had another tiring and busy day. During the doctors rounds this morning, Hope had another episode, and the good news is the doctor was able to witness it, especially since it was Hope's third episode in twenty-four hours. The doctors were impressed and among her other tests she ordered blood cultures, urine cultures, and a CBC to see if Hope has an infection. The CBC came back with elevated white cells, which is indicative of an infection, which then prompted the doctor to put Hope on antibiotics AGAIN!!! Right now this is only for a couple days, but if Hope's cultures come back positive it could be an extended process.

In addition, the pulmonologist met with Mommy & Daddy today. Hope's CT scan results from yesterday did not fully explain away her episodes, so she will have a broncoscopy to check for "flopy airway". She probably won't have this done until early next week beause we need to see if she has an infection first or not.

But even after all of this... isn't she beautiful??

Tuesday, April 21, 2009

Daily Dose: Tuesday, April 21


Hope had a busy day today!!! She had a chest CT scan this morning. It determined that she has moderate chronic lung disease. This is not brand new information to us or the doctors. We are waiting to hear back from the pulmonologist as to what they think of this, but a good guess is that they will order a broncioscope next.

Hope also had her eye exam. It showed that the blood vessels have grown out to zone 3. She still has some minor ROP so they are going to check her eyes again in two weeks. Since she is in zone 3 the doctors aren't terribly concerned.

Hope DID NOT end up having her head MRI. She had one of her episodes shortly before she was scheduled to have the test (she's smarter than the average baby) and the doctors and nurses didn't want her to have an episode while they were running the test so the MRI has been postponed, indefinitely. After talking to Hope's doctors the MRI might not even be done. The results won't change how Hope is cared for and there isn't any really big benefit to having the MRI. We all want to give Hope every chance we can and don't want to limit her by predicting what she may or may not do. Even though she didn't have the test, we thank everyone for continuing to pray for Hope. She wouldn't be here without everyone's support.

Pray for Hope

Special update:

Hope should be going in for her head MRI soon. Please pray for her (and her Mommy & Daddy) as they wait for the results of this important test. We are hoping for some encouraging news when the results come in the next few days. Lots of prayers please!!!!!

Monday, April 20, 2009

Daily Hope, Monday April 20

Hope & Mommy hanging out

Hope had a good day today. She had one episode this morning but was able to do well the rest of the day. Today started a new rotation for the doctors. This doctor wants to start looking at a plan to get Hope home which makes mommy and daddy VERY happy. One of the the things that needs to be addressed before she can come home is the number of episodes Hope is having. The doctors asked the pulmonologist to take a look at Hope to see if they could provide any insight. They would like to have a CT scan done on Hope's chest to see how bad her chronic lung disease is. If that doesn't give them an answer they would do a broncioscope. This would involve putting a tiny camera into her airway to check to see if there are any issues.

Hope has a big day tomorrow. She is having her eyes checked again. Hopefully the blood vessels in her eyes have continued to grow normally and her eyes are healthy. The really big thing scheduled for tomorrow is Hope's head MRI. This will provide a clearer picture than the head ultrasounds did. Hope's daddy and mommy are praying very hard for encouraging news to come from this test. We won't get the results until Wednesday so it's going to be a long stressful couple of days. We ask everyone to pray hard for Hope and for encouraging news to come from this test!!

Sunday, April 19, 2009

Daily Dose: Sunday, April 19

Hope & Cousin Kelly

Since Hope had a few episodes the night before, they increased her vapotherm to 3 litres this morning. She went the entire day today with no episodes, which made everyone very happy.

Hope spent more time snuggling with Cousin Kelly while listening to "Green Eggs & Ham". And, for the record, Hope decided that she did not like green eggs and ham, she would not eat them Sam-I-am! But Aunt Em thinks that just because Mommy & Daddy are vegetarians doesn't mean Hope doesn't have to not like ham, it must have been the green eggs that scared her.

Hope is up to 2930 grams, which is 6 pounds and 7 ounces!!! She is also getting longer, not just rounder. She is no 18 inches long, which is 6 inches longer than she was when she was born. GROW HOPE GROW!!!!

Saturday, April 18, 2009

Daily Dose: Saturday, April 18

Hope with her Mommy & Great-Grandpa Holtz!!

Hope & Great Aunt Patti

Hope's first game of patty-cake (played with Aunt Terri)

Hope had a fairly good day. She had a LOT of visitors, which was very exciting. Hope's Great-Grandpa Holtz, Great Aunt Patti, Great Aunt Terri and second cousin Kelly all came from Ohio to see her. She was very happy and excited to see all of them, especially Great-Grandpa & Aunt Patti, because she'd never met them before.

Cousin Kelly got to hold Hope for the first time, which both Hope and Kelly enjoyed very very much.

Hope gained a little more weight today, totaling 2900 grams. She had a couple of episodes throughout the day so the doctors are keeping an eye on her.

Friday, April 17, 2009

Daily Dose: Friday, April 17

video

Hope seemed to be in a much better mood today. Her vapotherm was turned down to 2 litres and she handled the change very well. In fact, it seems to be more comfortable for her! She didn't have any episodes today and her coloring is a little bit more pink so hopefully that is a sign she is making her own blood!

Today was another winner in the Biggest Fatty competition. Hope is up to 2890 grams, which is 6 pounds 5 ounces. Today was her last day on the antibiotics for the sore on her hand. After she got her last dose they took her central line out as well. She was a very very brave big girl during the procedure and didn't even flinch once when they did it (probably because she was ready for it to be gone!!). For now she is IV free!!!

Thursday, April 16, 2009

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!!

Wednesday, April 15, 2009

Daily Dose: Wednesday, April 15


Hope had a very busy day today with lots to report on. Because her blood level is low she had multiple episodes. To eliminate the episodes the doctors have put her back on the vapotherm, at least until she can start making her own blood and get stronger. Her blood levels are quite low, but her labs seem to indicate she is trying hard to make her own blood. The doctors want to hold off on transfusing her (unless completely necessary because things get worse) because this is a struggle that Hope will have to face one way or another, and it might as well be while she in the care of the doctors and nurses at the hospital when she can have all the support she needs to get through it.

Hope had a hearing test today and neither ear passed. This does not necessarily mean there is a problem, or that it is a major problem. The test (which Aunt Em thinks is ridiculous) has no degree of pass or fail, you either do or you don't. What the test does mean is that Hope will need to be tested again by an audiologist when she comes home. Often kids who don't pass the hospital's hearing test do well with the audiologist, but Hope's doctor told us that, considering her brain ultrasound results, it is more likely that Hope will have some hearing difficulties.

Hearing difficulties do not necessarily mean profound deafness as there is a large range of impairment. If there is an impairment, it is not necessarily related to Hope's brain issues as hearin gimpairment is th emost common difficulty diagnosed at birth. Many times these issues can be mitigated with hearing aids or surgery.

So what does this tell us? This tells us that this is something we should be concerned about, follow up on, and prepare for possible early intervention. The good news for Hope's Mommy & Daddy is that they have a basic understanding of how you support a child with a hearing impairment. They are both fully capable of learning sign language if that becomes part of our reality. Given the broad spectrum of challenges Hope may face, this is one of the easier ones for Hope's family to support her through.

Tuesday, April 14, 2009

Daily Dose: Tuesday, April 14



Hope had a good day today. She is now up to the weight of..... 2750 grams. She did well with her feeds today, but still had a few of her episodes. She seems to be low on blood, which normally would initiate a blood transfusion, but since she is now making her own blood the doctors want to see if she can "catch up" on her own.

Also today Hope had a sweat chloride test. This test is used to confirm that she doesn't have cystic fibrosis. But..... she couldn't sweat enough so they couldn't do the test. Obviously the doctors and nurses are unaware that beautiful baby girls like Hope don't sweat... they glow! So maybe she will have her "glow chloride test" later.

Hope's Mommy has been feeling a little (or a lot) under the weather since yesterday afternoon so keep her in your thoughts as she is trying to get better so she can continue to care for Hope and spend time with her. Hopefully tomorrow afternoon she will be back up to speed.

Now time for some editorial from the blogger (me). I know that everyone just loves to watch the progress Hope has been making, via the blog entries, but also the pictures. Well, I can honestly say that I am enjoying it more than anything!! Everyday that I'm not with Hope I can't wait to get her daily picture in my inbox. Today's picture, for whatever reason, just really hit me. She is a miracle, in every sense of the word. Look at her! She is truly amazing in every way. From her big bright eyes, to her reddish/blonde hair, to her little tiny hands and feet. For those of you who know me, it is a very rare day for me to be at a loss for words, and in fact, I can't remember a day when I have been at a loss for words. But tonight I'm at a loss. I can't begin to express how much this little tiny neice of mine has made an impact on my life. How she came into the world in a hurry, a little teeny tiny bundle of Hope. And how she has fought through what many would say was one unbeatable battle after the next. I know, with every ounce of my being (and I have quite a few more ounces than Hope does), that she is going to be ok, and she is going to grow up to be a beautiful person who will have one heck of a story to tell, and I am just proud that I can be part of her life. And that... that doesn't even begin to describe how much she means to me because for once, I am at a complete loss for words.

Monday, April 13, 2009

Daily Dose: Monday, April 13


Hope had a good but tiring day today. She had a few episodes but she still was able to do a full force breastfeed. Hope had enough of this "non-nutritive" stuff and she was ready to show everyone that she could do it on her own!! She did very well with it. Hope was also weaned back to .5 litres of flow and is up to full feeds. The doctor was very very impressed!!

Hope also got a little taste of luxury today. Mommy & Daddy took their first infant massage class today and were able to give Hope her first massage! Apparently being a baby is so stressful and requires massages... what a life!!

Mommy won't be able to feed Hope again tomorrow because she is feeling a little under the weather tonight. So we all are sending get well wishes to Hope's mommy because Hope definitely wants to continue her good work with her feedings.

Hope got MORE gifts today!! Peggy, Hope's favorite RT, brought her a pair of socks to match her blanket and someone donated the beautiful hat that Hope is wearing. Hope sends a big thank you!

Sunday, April 12, 2009

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!!!

Saturday, April 11, 2009

Daily Dose: Saturday, April 11


Hope had another overall good day today. As you can see, she got her daily bath and then decided to snuggle up under a blanket before getting her clothes on. Isn't she cute and "filling out"? (she is very sensitive about her weight so I'm not allowed to call her pudgy or fat)

Hope had a bit of an interesting morning. She is still learning how to multitask. She had problems remembering to breathe this morning, and it turns out she was making quite the diaper for mommy & daddy to change during all of this. We are glad that she is so "productive" but still reminding her to breathe through things.

Hope worked on her "non-nutritive" feeding today, but turns out it was quite nutritive. She ended up getting 15mls out of her "non-nutritive" feeding, so for her evening feed she only got 30 mls instead of her full amount.

Hope is really turning out to be quite the competitor in the Biggest Fatty competition. Weighing in today at 2650 grams, which is nearing the 6 pound mark!!!

Grandma & Grandpa R. returned from their brief hiatus to Michigan today. So they were very happy to see Hope and how well she is going. Aunt Em came down to celebrate the Easter holiday as well. And Aunt Em brought some presents from the Easter Bunny just for Hope! These presents will be viewable on tomorrow's blog... but I warn you... prepare yourself for complete and utter cuteness!!!!

Friday, April 10, 2009

Daily Dose: Friday, April 10


Today Hope had a tiring day. She has done well with her nasal cannula so the nurse practioner weaned her back to .5 litres of flow today. This is the farthest she will be weaned other than to put her on room air, so this is exciting!

Hope has developed an abscess on her left hand where her last IV was placed. It looked like a pimple last weekend but the doctors cultured it yesterday and found it is a staph infection. Today the doctors were worried it might pass into the bones in her hand so they have started her on 7 days of antibiotics. These should solve the problems with her infection, but could complicate her feeds since they kill off the "good" bacteria in her stomach. We hope that Hope will be able to take her feeds through the antibiotics.

Today Hope had some "stool issues" so the doctors did not up her feeds in case there was difficulty with the increased volume.

Hope was pretty touchy today. She had numerous episodes where her heart rate and blood oxygen dropped to an alarming level. Today, Hope preferred to be left alone to sleep. Can't blame a girl from getting tired, life is rough!! Hopefully she'll be feeling better tomorrow for the Easter festivities!!!

Thursday, April 9, 2009

Daily Dose: Thursday, April 9


Hope had another great day today!! Her feedings were increased to 33mls every 3 hours. She is tolerating them well, which means she should be gaining weight!!

Hope's weight is up to 2610 grams!

Hope spent the day chilling for the most part, preparing for Easter. A quiet but good day for our little Hope!

Wednesday, April 8, 2009

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!!!!

Tuesday, April 7, 2009

Daily Dose: Tuesday, April 7

Hope appears to be a little tired, but she had a busy day so you can't blame her

Hope had another great day today!! Her feedings were increased from 12mls every 3 hours to 18mls every 3 hours. Her vapotherm support was lowered and she is tolerating that well.

Hope had a follow up ROP (eye) exam and the doctors were pleased with her progress. They are going to check her again in two weeks. Physical therapy also had a visit with Hope. They are pleased with how she is doing. She has excellent muscle tone and is right where she should be for her adjusted age. She is using her muscles and limbs appropriately and she is moving and doing things just as expected. The therapists said the fact she is doign these things along with her ability to maintain a "calm alert" state (which she obviously gets from Aunt Em) are both VERY promising things. While these don't guarantee a future outcome, they are good news and are even more evidence of the fact she is WONDERFUL!!

Hope is continuing to be the biggest Fatty. She is up to 2550 grams, just 1 gram shy of 5 pounds 10 ounces.

Monday, April 6, 2009

Daily Dose: Monday, April 6


Hope had another great day. From a respiratory standpoint she is doing great. And she is taking her feeds well so that is also a big plus. They upped her volume from 5mls per 3 hours to 12 mls per 3 hours! Today she had 4 poops, not 1, not 2 but FOUR poops. Good work Hope!

This morning Hope was a bit chilly, and the nurse and doctor were concerned she might have an infection. So they took her blood, did some tests, and fortunately everything looks fine, so they assume it is environmental. They don't want Hope getting to cold, so they brought in a warmer for her. Daddy now refers to her has his "little french fry." Some have suggested that Hope was jealous of all the warm weather vacations Aunt Em goes on and decided she would get her own sun.

Today the doctor had a chat with Mommy & Daddy about the BIG PICTURE! Hope's gastrointestinal situation seems to be going well, but they are still concerned about her respiratory condition. Depending on whether Hope has any setbacks and how she progresses the doctor told Mommy & Daddy to plan on being at Riley for another month to 3 months, depending on progress.

Sunday, April 5, 2009

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!!!!

Saturday, April 4, 2009

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.

Thursday, April 2, 2009

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.

Wednesday, April 1, 2009

Daily Dose: Wednesday, April 1


Hope had a very frustrating day today. She is thinking that her ET tube is sooooo last month and wants it out.... NOW! Because of this frustration she spent some of her day being a little agitated.

To prepare Hope for the removal of her tube, which will hopefully be tomorrow, the doctors started her on a short series of steroids. These probably aren't going to make her any happier about things, but she does have a lovely weekend too look forward to as Aunt Em will be coming to visit and snuggle!!!

Today Hope had 3, yes THREE, bowel movements!!! The doctors seem happy with her healing and recovery progress.

Hope weighed in today at 2590 grams. Still continuing to grow, little by little.