Tuesday, March 31, 2009

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!!

Monday, March 30, 2009

Daily Dose: Monday, March 30

Hope had another good day today. AND.... she had another poop! Believe me, because Hope's Daddy was so proud he sent me a picture of it, so be glad that I have spared all of you faithful readers.

Hope's doctors decided to aggressively wean her off the ventilator which went very well. And surgery also decided to start her feeds!! The feeds are very very small right now, but it is great that she is making progress on both fronts!

They are also trying to decrease the morphine doses as it is known to slow down bowels, which obviously would be a tiny bit counter-productive!!

Mommy & Daddy report that Hope seems to be feeling more comfortable today, so we look forward to more good days this week!

Sunday, March 29, 2009

Daily Dose: Sunday, March 29

Hope is looking extremely cute today, in case you didn't notice!!

Hope had another good day today. The doctors lowered her ventilator setting a little bit so that is good and she continues to be on the road to recovery. Both Mommy & Daddy got to hold Hope tonight. Grandma & Grandpa Robinson were on babysitting duty during the day while Mommy & Daddy took care of some business, but looks as though they were successful and held down the fort quite well!

Hope gained a little more weight today, she is now up to 5 pounds 7 ounces. Her belly is a little bigger than yesterday, which means she is still retaining fluid. She definitely needs to start losing this excess. In today's picture you can ALMOST see her belly. She has her hand near it, as if she is bashful and doesn't want her picture taken. Silly Hope, we've already taken all those embarrassing pictures of you, why stop now!!!

Saturday, March 28, 2009

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!!!

Friday, March 27, 2009

Daily Dose: Friday, March 27

As you can see, Hope was awake for a little while this morning. She seemed to be tolerating her pain pretty well but is still out of it most of the time from all the medicine.

Hope's belly has gotten a bit bigger and she is retaining more fluids, putting her weight up to 2420 grams, which is 110 more than yesterday. Her doctor isn't concerned about it, but Hope does need to get rid of the excess fluid before she can begin feedings or be extubated. We are hoping next week for that.

It's so great to see, even if only via picture, Hope awake again and her beautiful little eyes. Unfortunately, someone has to break the bad news to Hope. Aunt Em was supposed to come and visit this weekend, and tell her all sorts of interesting stories about lots of things, but.... One of Aunt Em's professors was so kind and decided to have a MANDATORY class Saturday afternoon for 3 hours. So.... Aunt Em will not be seeing Hope this weekend. Aunt Em hopes that the bad news doesn't set Hope back at all. Aunt Em will be thinking of Hope all day on Saturday as she sits, very disgruntled, in school. But at least when Aunt Em goes next weekend she will get to hold Hope (fingers crossed), so at least the wait will be WELL WORTH IT!!!

Thursday, March 26, 2009

Daily Dose: Thursday, March 26

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

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

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

Wednesday, March 25, 2009

Daily Dose: Wednesday, March 25

Hope had another very restful and recovery filled day. Everyone is very excited at how well she is recovering from the big surgery. Today her nurse said that Hope is exhibiting the "best case scenario"!!! Hope's surgeon came and checked on her and said he thinks she is "coming out of the woods".

Hope hasn't gotten very puffy, which they expected her to, and the fluid she has retained she has been steadily peeing off. Hope's heart rate continued to be back down in the normal range and her blood gasses were all good. Her chest x-ray showed that she was a little under-inflated, but after she was repositioned that helped and it got better.

Hope is obviously retaining some fluid, which might possibly be skewing her weight, but she weighed in today as the biggest fatty FOR SURE!!! She weighed in at 2390 grams, which is 5 pounds 4 ounces!!!! That's right, over 5 pounds!!! Way to go biggest fatty!!!

Tuesday, March 24, 2009

Daily Dose: Tuesday, March 24

Hope had a very restful day today. She spent the day on Morphine to relieve the pain and Versed to forget that she ever had surgery. By tonight her blood pressure and heart rate had leveled out somewhat, so that is good.

Hope had another eye exam today and there was no change from two weeks ago, so we are grateful that everything still looks good. The doctors and nurses are very happy with her recovery so far. They were prepared for Hope to be very sick today (in typical Robinson style) but so far she has done really well.

We are thankful for a good day today and we look forward to another one tomorrow and many more in the future.

Monday, March 23, 2009

Update on Hope

Hope, Pre-surgery, Just chillin'

Hope, Post-surgery, with her pretty pink bow

Thank you everyone for all your thoughts and prayers for Hope today. As Aunt Em as said, surgery went well for Hope today. The surgeons were very happy with how everything went. Hope is resting sound tonight with some morphine to help with her pain. She got a little too warm after surgery and that caused her heartrate to be a bit elevated but once they got her cooled off a bit she settled right down. Everyone thought she might get a bit puffy (one of the side effects of the surgery) but so far she is not showing any signs of this. All in a all a great day for Hope - one more (Huge) step closer to coming home.

As you can see from the picture Hope was not about to let surgery hold her back from being stylish. Erin (one of her very nice nurses) made her a pretty pink bow to wear while she is recovering. Thank you Erin!

Pray for Hope

Hope has had a great morning. Grandpa says she was wide awake and "it must be nice not knowing what's ahead." They took Hope down to the OR for her reconnection surgery. The doctors expect this surgery to last around 3 hours. Please pray for the doctors, that they will have skilled hands. Pray for Hope, that she will handle the procedure well and bounce back quickly. And pray for Hope's family as they wait anxiously, knowing that it is out of their hands.

UPDATE***** 2.35pm EST*****

Hope is out of surgery. The doctors said everything went well. They found a small obstruction in her lower bowel which they think may have been the cause of the infections. They pushed that through fine. They also removed her appendix for good measure so she won't have to worry about complications with that later. She is back on the ventilator and will be for a few days but looks like everything went well.

Saturday, March 21, 2009

Daily Dose, Saturday March 21

Hope had another great day. She got to cuddle with Grandma and Grandpa Holtz more today which she enjoyed very much!
Her surgery is scheduled for Monday morning and although she has reached her weight goal Hope decided to make great progress in the weight gain department. Today's weight was 2110 grams (4 lbs 10 oz) which was a 70 gram weight gain for one day. Way to go Hope!!

Friday, March 20, 2009

Daily Dose, Friday March 20

The big day has been scheduled! Hope is having surgery on Monday around 10 am. It should take about 3 hours to complete. The surgeons feel confident that the surgery will go well, but Hope wants everyone to pray for a good outcome.

Hope continued to gain weight today with a weight of 2040 grams - 1 gram shy of 4lbs 8 ounces. She is doing very well with her non-nutritive breastfeeding too. In fact when her nurse checked to see if she had anything in her tummy on Thursday evening she was pleasantly surprised to find 6 mls of breastmilk! Looks like the non-nutritive feedings are more nutritive than expected. This is an amazing milestone for Hope, because it means she has figured out the suck-swallow-breathe combination which is a huge step in her development. Mommy and Daddy (and everyone else too) are SO pround of her!

Hope finally got to cuddle with Grandpa and Grandma Holtz today. All three have been anxiously awaiting this day and the time flew by too quickly for everyone. Since Grandma and Grandpa will be visiting for another couple of days Hope is looking forward to getting some more cuddle time with them very soon.

Thursday, March 19, 2009

Daily Dose, Thursday March 19

Hope had a very good day today. She didn't have any major respiratory or heart rate drops today.

As for her weight....*drumroll please*...... 2020 grams!! She has reached her minimum weight goal for her surgery!! At 4lbs 7oz Hope is now big enough for the surgeons to be comfortable doing her surgery. They stopped by to see Hope today and think they will do the surgery either next Monday or next Friday (they say it's going to be a busy week for them and they'll have to see when it will best fit in).

Hope was excited to see Grandma Holtz today (Grandma Holtz was pretty excited to see Hope today too). Grandpa Holtz will be coming to visit first thing in the morning and Hope is resting up tonight for a big day of cuddling tomorrow!

Daily Dose, Wednesday March 18

Hope had an episode free day today!!! Hopefully these will continue and she'll continue to breathe well and keep her heart rate up.

Hope is ALMOST to her 2000 gram weight goal. Her bed also serves as a scale and it is not always exactly accurate. The first weight they took today was actually 2000 grams, but they usually do at least 2 or 3 weights to get the most accurate. They weight they took as the final weight for today was 1990 grams (4lbs 6oz) - only 10 grams away from her goal!! The surgery team is thinking of doing Hope's reconnection surgery sometime next week, but nothing is scheduled for sure yet.

She got lots of cuddle time in today: cuddling with mommy, daddy, Grandpa Robinson and Grandma Robinson. She's looking forward to cuddling in the next day or two with Grandma and Grandpa Holtz!!

Tuesday, March 17, 2009

Daily Dose, Tuesday March 18

Hope's module was closed a good deal of the day today so Hope spent most of the afternoon snoozing. She did still get in some quality cuddle time with both mommy and daddy.

Hope is inching closer to her weight goal of 2000 grams. She gained 30 grams and weighed 1940 grams today (4lbs 4oz). The doctors were going to talk with the surgeons today to see what they had to say about the results of her lower GI, however, we have not heard back on that consultation yet. Hope is getting herself ready for the big day. The doctors have to check various things to make sure she is ready and one of the things they check is her Prealbumin level. The surgeons want this level to be 10 but Hope, in her typical fashion, is knocking it out of the park with a level of 17 today!

She is still having a few minor breathing and heart rate episodes each day. The doctors and nurses are thinking that perhaps they took her off of the caffeine a touch too early. They are going to keep an eye on Hope and see if she works through this on her own in a couple of days.

Monday, March 16, 2009

Daily Dose, Monday March 16

Hope did much better with her breathing today. She is still on the vapotherm and that seems to have helped her. She had a couple of VERY brief drops in her heart rate today but she quickly pulled herself back up before the nurses could even get over to her bed.

She had quite an adventure today. She took a ride in her travel isolette down to the radiology department in order to have a lower GI. The surgeons wanted to take a look at the part of her intestines that are "below" her ostomy so they could make sure there weren't any obvious problems with them before they do her reconnection surgery. Hope was a very brave, very strong girl throughout the entire procedure and did very well with it. The great news is, there didn't appear to be any problems with that section of her intestines.

Hope lost a little bit of weight today (but who wouldn't after an enema like that!?) She is down to 1910 grams, so not a large loss. Hopefully tomorrow she will be back on track with weight gain.

Sunday, March 15, 2009

Daily Dose, Sunday March 15

Hope had a fairly eventful day today. She seemed to have some difficulty remembering to breathe, which led to her heart rate falling multiple times, and got her way more attention form the nurses and respiratory therapists than is healthy. After the third episode, they consulted with the resident on staff and decided to put her back on the Vapotherm. This is a bit of a setback for Hope, as she has been off of the Vapotherm for a few days, but hopefully it will be temporary.

One of the causes for these episodes seems to be the preemie infant variety of asthma - the doctors think her lung tissue might have started contracting and spasming. They have inhaler medication to treat this, and she has been having this 3 - 4 times a day for a while now, but they have decided to up it to to 8 times a day.

Because of her episodes today, the doctors also checked her blood to make sure that she didn't have an infection (again). The blood test results indicated that she was not sick, but they did show that her blood levels were low so she is receiving a blood transfusion tonight. Hopefully the additional red blood cells will help Hope with her respiratory issues as well.

Hope weighed in today at 1930 grams - up 30 grams from yesterday. This is really good growth for her, and means she will hit 2000 grams in a few days if she keeps up at this rate. This is the milestone the doctors have set for her reconnection surgery, and the sooner she is ready for this the better. The doctors will leave Hope on her powerful antibiotics and will not feed her breastmilk until her surgery is complete.

Saturday, March 14, 2009

Daily Dose, Saturday March 14

As you can see from the picture, it was a big day for Hope, but an even bigger day for Grandpa and Grandma Robinson. After months of patiently waiting they got to hold Hope for the very first time today. Everyone was so happy to finally get this cuddle time! Hope spent a lot of time cuddling today - she got to cuddle with Grandpa, Grandma, Daddy AND Mommy all in one day!
Hope is getting closer and closer to her surgery day. She weighed 1900 grams today (4lbs 3oz) which puts her only 100 grams away from her minimum weight goal. If she keeps gaining like this she'll be there in no time at all!

Friday, March 13, 2009

Daily Dose, Friday March 13

Hope had a quiet, restful day today. She had some blood work done yesterday and, as the nurse practitioner said today, it came back "stone cold normal".

Since Hope has been on antibiotics her tummy hasn't been able to digest food very well she has not been getting breastmilk feedings. She has been practicing non-nutritive feeding in order to become familiar with the process. The doctors told Hope she had to cut back on doing that because they suspect that she was actually being too successful. This is actually a fabulous thing as it would mean Hope has figured out the suck-swallow-breathe combination. Daddy & Mommy are so proud of her!

Hope gained more weight today. She weighed in at 1860 grams (4lbs 1oz). Only 140 grams to go to reach her big 2000 gram weight goal. Go Hope!

Thursday, March 12, 2009

Daily Dose, Thursday March 12

Hope's mommy and daddy didn't get to spend much time with Hope today. Her module was closed most of the day because other babies were having surgeries. Hope was on her best behavior so her nurse could take care of the babies that were more sick than her.

Hope is no longer on the vapotherm, she switched to just the nasal cannula today and is doing very well with it!

The developmental pediatrician evaluated Hope today and was very pleasantly surprised by what she found. She said Hope is exhibiting behaviors that are expected for a baby her age. She was quietly alert, which means she was awake but just quietly looking around not agitated. This is a great neurological development sign as many babies with Hope's condition can not reach this state and tend to be very agitated when they are awake. This is not a promise of what days to come look like but it is a very encouraging sign and we are so very thankful. Hope's condition is not a regressive condition and so milestones she reaches now are not things that she will lose.

Wednesday, March 11, 2009

Thanks from Hope

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

Daily Dose: Wednesday, March 11

Hope: day 94

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

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

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

Tuesday, March 10, 2009

Daily Dose: Tuesday, March 10

Hope: day 93

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

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

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

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

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

Monday, March 9, 2009

Daily Dose: Monday, March 9

Hope: day 92

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

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

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

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

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

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

Sunday, March 8, 2009

Daily Dose, Sunday March 8

Hope All Dressed Up

Hope had a great day today. She is doing very well breathing on the vapotherm. Although she isn't thrilled about still having prongs in her nose she thinks it's much better than the tube down her throat or the mask strapped to her face. Since she doesn't have those any more her nurse switched her feeding tube from in her mouth to in her nose. It doesn't sound very comfortable to mommy and daddy but the nurses say it's more comfortable for Hope.

Hope continued her breastmilk feedings today and is doing well with them. She is on small amounts right now (only 4mls every 3 hours) but they will slowly increase the amount as she tolerates it. She is still gaining weight steadily, weighing in today at 1790 grams (3lbs 15oz).

Hope cuddled with both mommy and daddy today, which made all three very happy!

Hope's great-grandma Vivian likes to dress up when she feels good so Hope thought that sounded good to her today since she was feeling so good. She put on a pretty pink outfit given to her by her friends Pat and John Durham and she put on a pretty pink hat sent to her by her friend Sierra and Sierra's mom, Penni. Hope (and her mommy and daddy) thank everyone for their beautiful gifts!

Saturday, March 7, 2009

Daily Hope, Saturday March 7


Today was Hope's three month birthday. To celebrate, Hope got dressed up and cuddled with Mommy. It is amazing to see how much she has grown and changed in the past few weeks.

Hope now is big enough to be held as frequently as she wants to , and she can be held swaddled in a blanket "the normal way". As much as Mommy and Daddy liked kangaroo'ing, it is really nice to be able to watch Hope while holding her. She makes the cutest faces...

Hope had a big first today: she made her first attempt at "non-nutritive feeding". Basically, this is breast feeding after Mommy has pumped and is empty so that Hope doesn't have to worry about swallowing. Although Both Hope and Mommy were a little nervous the first time, it went really well and they will probably try again tomorrow.

Hope gained a little bit of weight today as well - she is now at 1770 grams, up 20 grams from yesterday. The doctors seemed pleased with her growth, and they are beginning to talk about her reconnective surgery as if it might not be a long time away.

Hope had visitors today - Mark, Jennifer, and Caleb Byland came down from Fremont to see Indianapolis this weekend, and Jennifer was able to stop in and see Hope for a few minutes this morning. It was very sweet of the Bylands to stop by and visit Hope and her family.

Hope didn't get much time to see Mommy and Daddy today because her module was shut down from 1:00pm because a new baby was admitted. Hopefully the new baby is feeling better and Hope can see Mommy and Daddy all day tomorrow.

Friday, March 6, 2009

Daily Dose, Friday March 6

Hope's Beautiful Face

Hope Modeling Her First Outfit

Your eyes do not deceive you! That's really Hope!

Hope decided that she was fed up with the ventilator tube today. She was trying to be a good girl but in her own "special" way she was telling the doctors and nurses that if they didn't get the tube out of her mouth she was going to have to take it out herself. So the doctors took Hope off of the ventilator today. Normally babies are put on the cpap as the next step down from the ventilator but Peggy thought that Hope didn't need to mess with that step and so they put her straight onto vapotherm. This is just a nasal cannula that provides a little bit of pressure support with heated and humidified air. So far she is doing very well with it, and it allows her a lot more freedom of movement.

Since she was feeling so much better and seems to be completely over her infection, Hope wanted to give everyone a little bit more of a fashion show. As you can see in the picture Hope tried on her first clothes today. She got a nice bath, put on some comfy clothes and then curled up in mommy's arms for a nice long nap. Both mommy and Hope were very relaxed and very happy.

Thursday, March 5, 2009

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.

Wednesday, March 4, 2009

Daily Dose: Wednesday, March 4

Hope: day 87

Hope had a good day today. Her blood gasses this morning were good. There was positive growth on one of her blood cultures, but the doctors weren't sure which one it was so there was another one drawn today, hopefully that will come back with no growth.

Hope continues to be a strong competitor in the biggest fatty competition. She is at 1730 grams today and we are pretty sure that is a semi-accurate weight and not affected by her fluid retention from earlier this week.

Hope seems to be doing fairly well and is getting past her infection, but the doctor isn't sure about taking her off the vent just yet. We are hoping that tomorrow we'll have an update but probably not until the weekend. The doctor also said Hope needed to come off the ventilator before her feedings resume, so we anxiously wait for that.

Mommy got to snuggle with Hope for a couple of hours today. Daddy hasn't been snuggling because he had a bug of some sort and definitely didn't want to give it to Hope, but maybe later this week Daddy can get his snuggle in.

Tuesday, March 3, 2009

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!!!!

Monday, March 2, 2009

Daily Dose: Monday, March 2- part 2

Hope: day 85

Hope is doing a bit better this evening. Her 8pm blood gasses were much better. She is busy resting and hopefully kicking the infection.

Hope had her kidney ultrasound this afternoon and will do an abdominal ultrasound sometime soon, but no results have come back yet. She is still on the ventilator, but was on room air most of the afternoon. She was also awake quite a bit during the day and according to Mommy she had a "much better day than yesterday." So that is what we are thankful for!!

Daily Dose: Monday, March 2- part 1

Hope: day 85

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

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

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

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

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