Saturday, February 28, 2009
The doctors are encouraged because they say she doesn't "look" sick and has been more active than yesterday. Please pray that they are able to pinpoint what is making our little Hope sick and help her feel better soon so she can keep growing and getting strong.
Friday, February 27, 2009
Thursday, February 26, 2009
Hope continued to be on the positive weight gain, weighing in today at 1590 grams, 3 pounds 8 ounces, which is now 2 pounds heavier than when she was born!!!
Hope got to snuggle with Daddy today for two hours. She is still on a CPAP of 6, but is handling it well.
Hope had a quiet day, which is great, and word on the street is she is resting up for a very exciting visit tomorrow!!!
Wednesday, February 25, 2009
Hope had a quiet day today. She seemed to be incredibly tired from all of her photoshoot yesterday and slept most of the day. Hope has got to learn that being high-fashion and beautiful is a tough job, sleep is for the weak... ok, and for babies.
Hope gained MORE weight today. She is now at 1560 grams, 3 pounds 7 ounces. Ounce by ounce she will become the biggest Fatty! Since Hope is becoming such a fatty, aka gaining weight, they increased her feedings a bit. The doctors lowered her CPAP pressure to 6 and she has tolerated it well.
Tuesday, February 24, 2009
Hope had another great day today. She had no episodes, so this is at least 5 days without any episodes!! The doctors are thinking about weaning down Hope's CPAP pressure. Currently she is on 7 but they are thinking they will wean her down to 6 within the next few days. If Hope handles that well then they will continue to wean to 5. If THAT is handled well for a few days then the doctors will switch her over to vapotherm, a nasal cannula supplying oxygen that is humidified and heated.
Hope gained weight today!!! She is now up to 1540 grams, 3 pounds 6 ounces. She is really striving to be the biggest Fatty!!
Other than that, Hope got to snuggle with Daddy for 2.5 hours today and Mommy was able to take some great pictures of Hope's face without any tubes or her "trunk" or CPAP hat on! ISN'T SHE AMAZING!?!?!
Monday, February 23, 2009
Hope had a good day today, a quiet day. The report from Mommy said that Hope is still adorable, still in her hat (as you can see in the picture), still adorable, still weights 1520 grams (same as yesterday), and is still adorable.
Apparently Hope really IS the most adorable baby in the world!!!!!
Mommy & Daddy weren't able to spend much time with Hope today because another baby was having some complications so Hope's module was closed. The doctor's rounds allegedly went smooth. After Mommy & Daddy got to get back with Hope she was able to snuggle with Mommy for two hours.
Sunday, February 22, 2009
Hope has been having some very great days lately, which we are all thrilled about. The doctors rounds used to be very involved talking about different medications, the ventilator, blood work, x-rays etc... lately though rounds have amounted to basically "This is Hope: she's growing, Don't Change A Thing!" The doctors and nurses have joked about how boring things have become (which around the NICU is a VERY good thing).
However, as you all have come to know Hope, she does not do boring. Since she has been feeling so well, she has been talking to her good friend Peggy about how she might be able to get back to "dressing up" in her latest fashions. Peggy and Hope did some talking and some plotting and Hope decided that, in honor of today being the day of the Oscars, she would make her acting debut as "Hope: The Cute Little Elephant".
And the oscar for "CUTEST BABY IN AN ISOLETTE" goes to..............
Friday, February 20, 2009
Thursday, February 19, 2009
Hope had another good day today. The good news is that her blood work is "textbook perfect" according to the doctors. She hasn't had anymore episodes over night or all day. She had a few desats but that was her way of telling Mommy & Daddy she wasn't comfy, because when she was repositioned she was sating 96-100, where she should be.
Hope's chest x-ray looked better today than it has in the past week week or more so they decided to stop the percussive therapy. She spent about 2 hours snuggling with Mommy so both Hope and Mommy were very happy. She gained a little bit of weight today, approximately 10 grams, increasing her fattyness factor to a total of 1430 grams.
Sidenote.... Aunt Em is in New York City attending a conference and EVERYONE is asking about Hope. The typical conversation goes:
Friend: Hey Emily
Aunt Em: Hi, how are you?
Friend: Good, how's Hope?
Aunt Em doesn't get asked how she's doing, but she is doing great so that's fine. Bring on all the support of Hope. At least 25 people have seen Hope's pictures tonight since Aunt Em arrived. Hope has support from all over and that makes a big difference, so keep the support coming.
Wednesday, February 18, 2009
Hope continues to be a contender in the Biggest Fatty competition. She gained 50 grams today, weighing in at 1420 grams. Good work Hope!!!
Hope also got to snuggle with Daddy today for almost 2 hours. They both loved it, but rumor has it Hope was asking when she is allowed to snuggle with Aunt Em. Really, I could hear it all the way in Chicago, hehehe.
Tuesday, February 17, 2009
Hope had a good day today. While she didn't gain any weight, she didn't lose any either so she remains at 1370 grams. She had her bi-weekly eye exam and everything appears to be developing normal so far!
The surgery department looked at the sutures in Hope's neck and are planning on taking the remaining stitches out this evening. Hope was ALREADY on her best behavior which I'm sure has absolutely nothing to do with the sugar water she may get.
They also are talking about her reconnection surgery, which is termed a "take down". They think that might occur when she was grown to around 2000 to 2500 grams. Since that is still 1000 grams away, Hope will probably be in the hospital for a month past her due date.
Hope enjoyed her time snuggling with Mommy today, as you can see from the picture above.
Monday, February 16, 2009
So it is official... Hope is going to be a dancer when she grows up. We always joked around because before she was born she was always moving around. And it seems as though she just has a knack for dancing. In the picture for today she was "getting her disco groove on". Dancing quite energetically today to some flamenco music that only Hope could hear. Already dancing to her own beat, now that's what we like to see!
Hope is finally on the weight gain train. Today she weighs 1370 grams, which is over 3 pounds!!!!! (cue lights, sirens, confetti, and drop balloons) Good work Hope, that's the Biggest Fatty.
Hope snuggled with Daddy today for a while but other than that had a very good and very quiet day. She has had no "episodes" for over 24 hours now, and the two she had previously were technical issues, like water getting in her nose from her CPAP, not her forgetting to breathe. We are looking forward to another day free from episodes.
Sunday, February 15, 2009
Hope is 10 weeks old today!!! As you can see from the pictures, a few of them are from Friday. We didn't get a chance to put these beautiful pictures of Hope's face up on Friday, so they are augmenting today's post since today's picture is a little bit fuzzy.
Hope had a very good day today. She gained more weight, up to 1350 (2 pounds 15 ounces), obviously she now is just trying to stay with the date theme. As long as she is keeping up with the biggest fatty, that's fine, however she does it!!
Hope spent time today snuggling with Mommy. She also got her first taste of sugar! The nurse practitioner had to take out the stitches that were in Hope's neck from when her central line was taken out. The stitches didn't dissolve so a little removal was necessary. Hope was on her best behavior so as a reward for her good work they gave her some sugar water on her pacifier, and like any Robinson, Hope LOVED IT!!! It's official, Hope loves sugar. So feel free to send any sugary things to Hope, but it is probably best if you send them to Aunt Em so she can taste test them first and make sure they are ok before Hope eats them, hehehe. But considering Hope can't digest on her own yet, let alone eat, maybe that should hold off after all.
Saturday, February 14, 2009
Hope had another great day today. Her eyes open for a lot of the day. She was looking great!! She got to snuggle with Daddy, which was a special treat since today was Daddy's adoption day, so Happy Adoption Day to Hope's Daddy!! She had a little scare when the snuggling started, but turns out she just spit up a little bit and couldn't breathe because of it, so that got suctioned out and she was back on her breathing frenzy, phew!!!
Hope is truly the best Valentine ever. Mommy & Daddy have been fighting over which one gets to claim Hope as their Valentine, but we all know the truth: Hope is Aunt Em's Valentine!!! (oh the perks that come with being the author of the blog!!)
Friday, February 13, 2009
Hope got to snuggle with Mommy for about two hours and was very active during most of it. Mommy said that Hope kept trying to turn her head over but then her tubes would get stuck and so her head would only turn half way. Mommy would turn it back, then Hope would try again. At least we know she is a persistent little one!!!
Good news is all of the blood cultures that have been "brewing" have come back, so far, clear, so that means there is no infection!! The other news is that we aren't sure why Hope isn't gaining weight. So they are changing things around again, trying to add more fat so she can get more weight in.
Hope only had one incident today. (an incident is where she kind of forgets to breathe and possibly has to be stimulated PLUS a little extra breathing help) Well.... today Mommy & Daddy left Hope in the care of Aunt Em for a little while. Those of you who know Aunt Em know that she is great with kids (possibly debatable now) however she happens to be a very sleepy person. So Aunt Em and Hope were hanging out, Hope in the safe confines of her isolette and Aunt Em in the nice comfy wheely chair next to the isolette. After story time Hope was napping, and, well... it looked pretty nice so Aunt Em kind of started to doze off in the comfy chair. Obviously that is inappropriate so Aunt Em told Hope she'd be back in a few minutes and went to the waiting room where she promptly passed out cold. Aunt Em woke up a bit later and went back to see Hope. She still looked great. She was awake and kicking at Aunt Em's hand and being very playful. Aunt Em noticed somethings in the isolette were in a little different position, but no big deal. **fast forward to when Mommy & Daddy come back*** Mommy asks the nurse how she was and Deb, the nurse, tells her that Hope had one pretty severe incident of not breathing while they were gone. Mommy looks at Aunt Em (who has a completely shocked look on her face) and asks what happened. It is then that Aunt Em confesses that a nap took place. Hope, with a beautiful look on her face, was trying to say: "Don't worry Mommy. Aunt Em left so I just held my breath till she came back." So yeah..... not exactly Aunt Em's help, but the first solo-babysitting didn't exactly go well.
The good news is that was Hope's only episode/incident for the day and she had a great day overall.
Thursday, February 12, 2009
This video was from Hope's respiratory treatment on Tuesday. It looks a little alarming at first, but it definitely helps her breathing!!!
Hope had a different day today. She had some other episodes of uncooperativeness, aka forgetting to breathe. She's still working on that.
The highlights, and/or the only events of today include:
- Becoming overly joyous at the sight of Aunt Em
- Having another case of the hiccups
- Flailing her arms and legs
- Being cute
- Being cute again
- More cute
- Still cute.
Wednesday, February 11, 2009
As you can see, Hope is THE MOST ADORABLE baby in the world. She is pictured here hugging her unstuffed Teddy. Seriously..... can it get any cuter than this? (Rhetorical question but the answer is NO!)
Hope had a good day. Her weight was down to 1270 grams, which is down from yesterday, but is still up 30 grams over the past two days. That is reasonable and realistic, so we give Hope some props: Good work Hope, aka the Biggest Fatty.
Hope got to snuggle with Mommy for a while. Everyone else (ok, maybe just Aunt Em) is getting very jealous of all this snuggling and looking forward to when Hope can snuggle up with all of us!!
Hope's feedings are going well again, upping them to 10ml per feed, which is up from 9ml. We shall see how that affects the Biggest Fatty competition.
Hope is overly excited because Aunt Em is coming tomorrow, Thursday, and then Friday night Grandma & Grandpa R will be returning from their brief hiatus.
Tuesday, February 10, 2009
Hope had a little excitement last night. She had an "episode" so they ran bloodwork, did a chest x-ray, blood culture, and a urine culture. The chest x-ray showed she had poor expansion, so she is now on percussive treatment and an inhaler. We are still waiting on the results from the cultures. The CBC bloodwork showed that her crit was low, so she also had an infusion, which makes her color much better!!
Hope's weight gained 100 grams overnight!!! That is a whopping 1340 grams, 2 pounds 15 ounces (which is just 21 grams short of 3 pounds!!!) But, we don't want to get TOOO excited because the weight could be a bit inaccurate and show a loss tomorrow, so we just have to weight and see!! (pun intended)
Hope was a movie star today as well, she was videotaped during her percussive treatments. We'll post those a little later.
Monday, February 9, 2009
Hope had another nice quiet day. Her antibiotics were discontinued because her infection looked as though it has left the building! She won't have her blood gasses drawn again until Thursday (provided she behaves herself).
Hope snuggled with Mommy today for 3.5 hours, which everyone loves, and those of us who aren't snuggling with Hope are very very jealous.
Hope is tolerating her adjusted feedings well and gained 40 grams today for a whopping total of......... 1240 grams! Very excited about this weight gain and we pray it continues!
Sunday, February 8, 2009
Hope had a good day today! She hasn't been able to snuggle since Wednesday because of all the tests and not feeling good, but today she was able to snuggle with Daddy, so that was very good. Hope is also beefing up. She is now up to a whopping 1200 grams, 2 pounds 10 ounces!! This is a new high weight for her. So we are very excited she is making a little progress. Hope is back on the weight gain train and it's going full speed ahead! Chooo Chooo!!
Hope is already missing Grandma & Grandpa R as they are back in Grant taking care of business for a few days, but they should be back this upcoming weekend. And Aunt Em is coming so Hope has LOTS to look forward to!!
Hope's Great-Grandpa Holtz is still in the hospital but the doctors have isolated the problem, given him some medication, and we are hoping things are taken care of soon.
Update: Mommy & Daddy, along with Grandpa & Grandma R have officially moved into the new dwelling place. An apartment all to themselves!! If you want to send mail, here is the address:
Dave & Lynne Robinson/Andrew & Sarah Robinson
City View Apartments
3801 N. Meridian Street.
Indianapolis, IN 46208
Saturday, February 7, 2009
HAPPY 2 MONTH BIRTHDAY to HOPE!!!! Hope celebrated her 2 month birthday with Mommy & Daddy today (as Grandma & Grandpa R drove back to Michigan). Today was a much better day for Hope. She didn't have any, repeat... ANY, as in none, zero zilch, nada... major "episodes" today. The blood cultures still looked good which means it is most likely that Hope doesn't have an infection, so that is good news. Her blood gasses were good this morning and because they have been stable for a few days they will not draw them again until Monday morning. So.... if Hope behaves, no pokes on Sunday!!!
Hope has decided to compete again in the Biggest Fatty competition. She is up to 1190 grams (2 pounds 9 ounces) which is only 1 gram away from 2 pounds 10 ounces!!! Her feedings have gone well, especially considering she gained weight. We are very excited for this new added "fluff" to Hope and looking forward to it continuing.
Friday, February 6, 2009
Hope had a pretty rough day today. The attending doctor looked at her follow-up KUB x-ray from last night and thought that it looked as thought the gas wasn't moving as well as it should so they consulted with the surgeons who had worked on her intestines and they decided to perform an upper GI, only in reverse. Since she has a nice little "port" (what Aunt Em refers to as her nubbin) that goes straight to her intestines they were able to put the dye in via her ostomy site and imaged it running in reverse, tricky. They were looking to see if she had any scar tissue that might be forming from the previous surgery and possibly blocking or slowing things down. The great news was there was no signs of that or any other trouble.
Hope is so adventuresome. All her previous procedures and tests were performed at her bedside because she was on the jet ventilator and wasn't stable enough to travel. Today, however, she got to ride in a transport isolette and took the elevators all the way from the 3rd floor to the 1st floor where the radiology department is She was wide awake for the trip and was just laying back, taking it all in, like the good little adventurer she is. She tolerated the travel and tests very well. There was lots of big equipment in the room where they did the imaging so Hope felt OVERLY small on the very big table the put her on, but thankfully Peggy (Hope's favorite RT) was there and held her hand to keep her company while they ran the tests. A big THANK YOU to Peggy for making her feel better.
They stopped Hope's feeds while they were waiting for the surgeons, radiology and while running the tests, so she resumed feeds at 5pm tonight. They didn't weigh her because of all the other adventures. They also didn't want to take her CPAP mask off because she was having a lot of "episodes" today. She de-satted and dropped her heartrate SEVERAL times today (scarring Mommy & Daddy) and a couple of times she needed some stimulation and oxygen to help her remember to breathe again. The doctor things she may have outgrown her caffeine dose so that will be increased later today and another dose starting tomorrow.
Hope didn't seem like she felt good today, which made Mommy, Daddy & the Grandparents worry. But hopefully tomorrow she will perk back up.
Other good news is that the blood cultures from yesterday hadn't come back with any growth today, but Hope will get an additional antibiotic today just to be on the safe side.
Hope's Great-Grandpa Holtz is sympathizing with Hope tonight as he is now spending the night in the hospital as well. He passed out earlier today and had to be taken to the hospital. The doctors said his heart is beating irregularly (the top is beating faster than the bottom). Hope is praying that Great-Grandpa's doctors will take as good care of him as Hope's doctors have taken of her, and if they do she's sure he'll be healthy and back home soon. So please say an extra prayer for Hope's Great-Grandpa Holtz.
All the x-rays and test results came back normal. They are unsure why she is not gaining weight, but we are all very thankful that there aren't any big problems right now.
Thursday, February 5, 2009
Hope was very culturally enriched today because Daddy was reading her poetry. She enjoyed the poetry so much that she struck a very artistic pose for today's daily dose.
Today was a great day for Hope. Last night they started her back on TPN (the nutrients that come through the IV) so today was her first day with reduced feeds. She lost weight, apparently confused by the Biggest Loser (tv show) and Biggest Fatty (NICU competition), and is now down to 1140 grams. But.... they expected she might lose a little weight today since she "disposed" of so much of her food on Tuesday before being cut back.
Hope had another "blonde" moment today and either forgot to breathe or got tired of breathing, causing some apnea. Her heart rate dipped and her stats dropped but they brought them back up fairly quickly. Since she has had a few of these episodes over the last few days she got another chest x-ray. Everything looked good on the x-ray, so that is something to be thankful for. Her residual was discolored today so they got a KUB x-ray earlier today. That x-ray appeared to show some pockets of air, so another x-ray was ordered to make sure things were moving and they are. Hope has a bit of air in her stomach and digestive system but that could be from the CPAP pushing air in. Hope also had a complete blood work-up today and that came back looking good.
In other news.... Grandma & Grandpa Robinson finally left the hotel they have called home for almost 2 months and moved into an apartment in Indianapolis. The good news is that Mommy & Daddy moved in too!! They left the McCrib and now everyone is staying under one roof. The McCrib was great and everyone was so supportive but it will be good to have a kitchen they can cook in, and be able to get away (even if only a little bit) from the stress and chaos surrounding the hospital area.
Wednesday, February 4, 2009
Hope had another great day!! This morning they took her blood gasses, which were improved, so her CPAP pressure was lowered to 6. Her gasses were checked in the afternoon again and were still good, so Hope is now a 6 on the CPAP.
Hope got to snuggle with Mommy today and then got a special treat (which you can see in the picture above). Hope got to listen to her first concert. Daddy played Hope some tunes on his alto flute. Obviously Hope LOVED the private concert just for her, as did the nurses and everyone else in the unit.
Hope didn't gain any weight today, so she is holding steady at 1180 grams. The doctors are changing her food tonight. Currently Hope was on full breast milk but since that isn't helping her gain weight she is going to be changing to partial breast milk and partial IV feedings. Hopefully she'll tolerate that better and start gaining weight and truly become "the Biggest Fatty" (per Aunt Em's wishes).
Tuesday, February 3, 2009
Today was a big day for Hope. It was cranial ultrasound Tuesday. Hope's ultrasound was good and showed no signs of change. Hope's feedings were lowered because her output (aka poop) is higher than is desirable. They will keep an eye on that and see what is going on with that. The good news is that she weighed in today at 1180 grams, which is 20 grams more than yesterday and she now weighs 2 pounds 9 ounces!!! Now that's what I call "the biggest fatty". Hopefully she continues to gain so she can win the competition, however, it appears she is only battling herself, so I suppose she will win no matter what, but don't tell her that, we want her to be competitive, ok, Aunt Em wants her to be competitive.
Hope's eyes were checked again today and all looks good thus far. They will be checked again in a few weeks. Hope also had a chest xray that looked much better than Sunday's, showing much better expansion.
Besides all those tests Hope managed to get some good snuggling in with Daddy today.
Monday, February 2, 2009
Hope was switched from the CPAP mask to the nasal prongs. Statistically she handled it quite well, however, she was adamant that those prongs would NOT be in her nose. After many struggles, she finally convinced them to switch her back to the mask. Little did Hope know, but they were planning on putting the mask back on anyways, they just wanted to give her face a breather (yes, pun intended).
Hope is approaching her 2 month birthday!!! And we are very glad that things have been going so well lately. Hope is asking for some special prayers tomorrow. She'll have another head ultrasound and is hoping for stable or improved results. Please say an extra prayer for that tomorrow. And while you are at it, throw in a prayer for Hope's Mommy & Daddy. They get a little uneasy on ultrasound days, understandably. So let's hope that everything is good!
Sunday, February 1, 2009
Happy 8 week birthday to HOPE!!!!
Hope had a rather rough morning this morning. Evidently she thought there was a sale on ventilators and, being the conscientious shopper that she is/will be, she didn't want to pass up a good sale. It started off when she had her blood gas drawn. It wasn't great so they increased the pressure on her CPAP. If the gasses didn't improve in an hour they were facing re-intubation. Thankfully they sold out of ventilators and were not offering rainchecks, aka her gasses went back up and she did not have to be re-intubated, staying on the CPAP for now. As long as Hope "behaves herself" she won't have another blood gas until the morning.
Hope is still learning how to multi-task. She gave everyone a few more grey hairs today when she kind of forgot to breathe and her heart rate dropped really really low and her oxygen saturations kind of dropped low as well. Fortunately, she bounced back and no further action was necessary.
Hope has become sick of her stationary surroundings and tried to go on an adventure of her own. She was laying on her belly in her isolette and started kicking. She got to kicking at her bedding and next thing you know she had scooted herself out of the bedding and across the isolette. Apparently she didn't get the memo that she's too young to crawl!!!! Silly Hope!
In other news... today is Superbowl Sunday. Hope doesn't seem to care since the Pats aren't playing, so she, along with her Mommy & Daddy, are uninterested. Grandpa & Grandma Robinson also appear to be uninterested since the Lions aren't playing. G'pa R seems rather disenfranchised, saying something about it is doubtful if the Lions will ever make it to the Superbowl within Hope's lifetime, even if she lives to be 100. Very interesting how pessimistic Lions fans appear to be.... well at least Hope is somewhat optimistic.