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.

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.

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.

Daily Dose: Thursday, February 26

Hope: day 81

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

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

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

Daily Dose: Wednesday, February 25

Hope: day 80

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.

Daily Dose: Tuesday, February 24

Hope: day 79

Hope: day 79

Hope: day 79

Hope: day 79

Hope: day 79

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

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

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

Daily Hope: Monday, February 16

Hope: day 71

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.

Daily Hope: Friday, February 6

Hope: day 61

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.

Daily Hope: Thursday, February 5

Daddy reading some poetry to Hope

Hope: day 60

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.

Daily Hope: Wednesday, February 4

Hope (day 59) with Mommy (age 30) and Daddy (age31)! HA!

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).

Daily Hope: Monday, February 2

Hope: day 57

Hope had another good and quiet day today. She spent some time snuggling with Mommy, which both Hope and Mommy LOVE!! Hope didn't gain any weight since yesterday, still at 1160 grams, but that's ok. She'll gain weight at her own speed.

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!

Daily Hope: Sunday, February 1

Hope: day 56

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.

Daily Hope: Thursday, January 29

Hope: day 53; with her pacifier

Hope: day 53; just chilling

Hope: day 53; BEAUTIFUL!!!

Hope is loving being a Ninja with her CPAP mask. She is definitely enjoying the freedom of breathing on her own. Her oxygen levels are down to 28%, which is even less than she was at yesterday!!

Since Hope was doing so well breathing, her feeds were increased to 17 ml per feeding and she is gobbling it all up, so hopefully she'll be gaining weight more rapidly. She weighed in today at 1140 grams, 10 grams more than yesterday. Yesterday she was weighed with her CPAP on but today she was weighed without it so she probably did gain more weight today than just 10 grams. Hope doesn't know it but she is competing in "The Biggest Fatty" competition, against herself. So her goal weight for tomorrow is 1175. We'll see if she can make her goal weight and stay in the game.

Hope got to snuggle with Daddy today. AND.... Mommy & Daddy got to hear Hope cry for the first time when she was out snuggling. They said it was a tiny little cry but was music to their ears!

Hope is looking so beautiful without any tubes or anything and just her beautiful face with her big eyes wide open for the whole world to see!!

Daily Hope: Wednesday, January 28

Hope: day 52

Hope: day 52; "Ninja Hope"

As you can see... Hope was extubated today!!!! Which is fantastic! She is sporting a new "ninja" headgear. Ok, it's really a Cpap mask. The mask eases her breathing process but she is definitely breathing on her own, no ventilator necessary!! Apparently when Hope was extubated and taken off the ventilator, she was sure she liked her new mask. But... like the brilliant baby she is, she quickly realized that the mask was far better than having a tube down her throat. Her breathing has been great, in fact, even better than on the ventilator. When she was on the ventilator it was kind of like she could only breathe through a straw (the tube) but now she can open her whole airway and suck in all the good air!

Hope was busy breathing on her own today, so her feedings were not increased. The nurses also wanted to make sure that Hope was concentrating on breathing, so Daddy didn't get to hold her as planned, but he'll make up for it tomorrow.

Hope weighed in today at 1130 grams, which is a heavy 2 pounds 7 ounces (if Aunt Em's online conversion is accurate). While it is only a 10 gram increase from yesterday, that's ok because she was only weighed once and since she is weighed in her isolette, it isn't an exact measurement anyways. So hopefully tomorrow will bring a more accurate, and higher, number.

Overall a good day for Hope. Her lungs are breathing away on their own, and I'm sure she feels liberated!!