Wednesday, July 29, 2009

Free at Last!

Babs had her assessment with Dr. Black today at the hospital and she came home completely PICC-line-less. Yippee! In fact, it crossed my mind while I was changing her after our car ride back that she actually has fewer accoutrements than ever in her life! She doesn't even have a bag hanging off her anymore. She's... free!

Now she can bathe as often as needed and go swimming and wear pants or a dress without a onesie underneath or even hang out in just a diaper!

Her disposition is more calm and happy today too. We laughed in the car for about 15 minutes straight on our ride to PCMC. And she wasn't scared of Dr. Black when he entered the room (of course, he wasn't in scrubs today either.) Although she still cries every time she poops and wakes up multiple times during the night, I think she's getting more used to her (now bleeding) bum rash. At least, she doesn't seem as disconcerted by the pooping experience and the subsequent pain.

Our Ilex arrived today in the mail, so we're excited to give that a try and see if it helps get rid of the red. Ilex is suggested by more Hirschsprung's parents than anything else. So far, we've been experimenting with a beautiful cocktail of layered powders and ointments at every change, and it takes us back to our kindergarten finger-painting experiences. True artistes!

Tuesday, July 28, 2009

Smile!

During it all, baby was getting a new tooth!

She has another white pearl next to her two front bottom teeth -- 7 teeth in all now. The one on the opposite side looks set to break through soon.

The transfusion went well last night. The nurse helped me set up the pump and line, then left. She told me the pump would beep and shut down if there was an air bubble and explained what to do if that happened. As soon as she drove away, the pump beeped and shut down, but the screen said, "Occlusion." Fortunately, my vocabulary was adequate to understand the trouble, so I found the occlusion and fixed it.

The hardest part of the procedure was keeping babs from playing with (or munching on) the medical equipment attached fairly near the palm of her 1-year-old hand. And also, I couldn't get the pump to turn off. But once I brandished my sword, it backed down.

Monday, July 27, 2009

... Jiggety Jig

Today's assessment at Primary Children's:

Dr. Black seemed pleased with Bridgette's health, overall. He said, "Sick people look sick, and she doesn't look sick."

Her incision sites continue to heal without infection. He says he's seen worse bum rash from Hirschsprung's babies, and I believe him. I've seen photos. No one is thrilled with baby's fluid intake, but he concurred with me that we could do i.v. treatments at home and that she needn't be readmitted to the hospital. He also noted that baby doesn't appear to be dehydrated -- her mucus membranes are wet, her skin bounces back when pinched, her fontanels aren't sunk, etc. As a total colon HD kid, we've monitored these signs her whole life, so if she heads towards dehydration, we know for what to look.

I believe we will do transfusions of straight saline solution today and not TPN or lipids. We always thought her chub would come in handy around surgery time, and Dr. Black agrees. She's lost weight over the last two weeks (10 oz), but those of you who have seen her specialty-thighs and Pillsbury-arms know she can afford to feed off her fat for a little while. Them migrating whales. They've got a system.

Dr. Black seemed visibly relieved that some of her other symptoms (such as fever) have gone away too. I got the impression, however momentarily he let on, that he was more worried about the blood supply to her rectal cuff than his somewhat nonchalant discussion of it before had indicated. I thought her stool looked very bloody last night, but it may have been the cherries we fed her, or perhaps it was simply brown, like a normal person. Her stool changes color a lot, and today it was back to green and definitely no blood.

So, baby and I are home! She continues to ignore most food and drink (though she increases her total, but small, formula intake by 1/2 ounce daily), and an Intermountain Home Care nurse will be coming by later this evening to hook up some fluids to Bridgette's PICC line. In short, it may be slow, but she continues to progress.

We'll return to PCMC in two days for another assessment.

Saturday, July 25, 2009

Odd Delay

What an odd miscommunication. Apparently there is no one in PCMC clinic today, so we are keeping Bridgette home until Monday. By the time she had truly gone to bed last night (woke up several times due to her sore bum) she had managed to drink 14 oz., in doses of 1 to 2 ounces at a time. This morning she started with 3 oz. in one sitting, an improvement already. The surgery resident at the hospital said to stay the course, and unless we feel she needs a readmit for nutrition, to wait until Monday to bring her in. Assuming she continues to improve, we will pull the line then.

Good thing the home nursing group left us extra supplies to flush her PICC! Ends up we'll be caring for it longer than planned.

Friday, July 24, 2009

One Day at Home

Baby has definitely eaten better at home than at the hospital, but only drank 10 oz total today. Not stellar. I hope her surgery team believes, as we do, that she will continue to improve better here in a familiar environment than at the hospital.

She had three very small bites of banana today too, as well as a dropper full of infant vitamin and some Tylenol. She's kept everything down.

In fact, everything is staying down and flushing out of her vigorously, and that bum rash we almost avoided in the hospital (she started turning red the day we left) has flourished with vim. She has racing stripes up her back. She screams every time she poops and every time we change her -- both of which happen every half hour. (For a family that has always recycled more than we throw away, our diaper consumption just skyrocketed. Before Bridgette was born, we had considered using cloth diapers. Now, despite polluting the earth with 40+ diapers a day, we're glad we chose disposable.) Bridgette is exhausted and should be in bed at this moment, but she's in Jeff's lap crying because she hurts so much.

One challenge is that her poop is still about as runny as water and acidic as... well, hydrochloric acid... and as we change her, she sprays almost continually. So, sometimes we go through three diapers a change just to try to get a clean one on her bum. This is also a challenge when it comes to creaming her. All of the help sites say the bum should be totally dry before applying diaper cream, so that we don't trap moisture under the barrier. Problem is? We can't seem to keep her dry. Ever. Not for 2 seconds straight.

I went shopping for supplies this morning (acidophilus, ear thermometer) and at both stores the pharmacists asked me questions which led to them asking for details which led to them requesting Bridgette's whole story. (I swear I didn't just start spouting, as tempting as that is.) Both pharmacists were really concerned and said they'd pray for her. (One even wants us to call back as she progresses.) I thought it was really sweet of them.

When I arrived home, I found Bridgette passed out in Jeff's lap, like so.

We also had a home nursing service bring us supplies for her PICC line. For those who don't know, a PICC line is a like a super-mega-i.v. The procedure to put it in requires full-anesthesia, at least for babies. They threaded a line up through a major vein in her arm and it ends directly in her heart. A piece of plastic connected to the line is actually stitched directly to her arm to keep the line stationary. So when meds or nutrition/lipids are pumped in, they get delivered straight to her right atrium. When we do blood draws, it also comes straight from the heart.

When Bridgette woke up this morning, I double-checked all the potential trouble signs concerning her PICC and found one. She was bleeding around the entry site. I immediately called the hospital, and when they found out it was only about the size of a dime, they weren't concerned. Still, I was really glad when the home nurse came and said the same thing. She unwrapped it (left the dressing on) and watched it the whole hour she was here. She thinks the wrapping was too tight, and I agreed. So we rewrapped it more loosely, and now baby can use her arm again too.

The nurse taught me how to clean the clave and flush the PICC line with saline and Heparin. I must admit, I feel more like a nurse every day.

The nurse also checked Bridgette's vitals. Her heart rate and blood pressure, which were always high at the hospital, are totally normal here. One more reason, in my book, to keep her home. We've continually monitored her temp (thank you brand-new ear thermometer), and it's been normal all day.

Here is Bridgette happily playing with her bottle of milk, and drinking none of it.

Thursday, July 23, 2009

We're Home

And it's nice to be home.


As soon as we walked in the door (9:30 p.m.) Jeff offered Bridgette a bottle and she immediately drank 2 ounces. And now she's at the table eating Cheerios. The hospital would be aghast that we've moved straight to Cheerios... but we just want her to eat. Now we wait to see if her intestines can handle it.

Please wish us well. As previously mentioned, we will return to the hospital on Saturday no matter what. At that point she will either be readmitted or have her PICC line pulled. It all depends what happens over the next 36 hours at home.

With that, our kind neighbors just brought us a yummy dinner, and Jeff and I are both very hungry and tired, so I bid you adieu for tonight.

Baby goes home today! (with a caveat...)

If you are surprised by the title, you are no more surprised than me!

Dr. Black and his helper came in a few minutes ago, and here's a rundown of our conversation.

Dr. B: It's weird she's not eating. Do you think she would eat at home?

Me: I can't guarantee it, but I think so.

Dr. B: Has she ever had this problem before?

Me: Once. The last time she was here in the hospital. She refused to nurse. As soon as we got home she was fine.

Dr. B: She's not on any meds except for Tylenol every 12 hours. You can do that at home. Her wounds look good. All of her tests have come back negative. She just won't eat.

Me: Yeah, it's very frustrating. I don't understand it. I start out each attempted feed very gently and calmly and get progressively more upset as she won't eat.

Dr. B: Well, would you like to go home?

Me: (Eyebrows raise. Hopeful eyes ensue. Too timid to smile.)

Dr. B: We could wean her off the TPN and lipids, send you home with the PICC line still in, and if she doesn't eat or drink, bring her back on Saturday for more nutrition.

Me: Ok.

Dr. B: Have you ever placed a tube in her stomach? We'll send you home with one of those as well so you can force fluids if you need to.

Me: Ok. We can force her to eat by syringe too. We did last night.

Dr. B: Ah. You water-boarded her.

Me: It sure felt like it. None of us liked it.

Dr. B: We'll send you home tomorrow morning.

Me: (Timid smile ensues.)

Dr. B's helper, to Dr. B: Would you prefer tomorrow? or today? It would be easier today since tomorrow is a holiday.

(For you non-Utah people, July 24th is Pioneer Day here. A lot of companies, including Jeff's, give employees the day off. The hospital staff would be skeletal. Even our Croatian friend, Fadila, who cleans the room each day will not be here all weekend. She's very excited.)

Dr. B: Sure. Let's send her home today. Now you understand that if she doesn't eat, you might have to tube feed her which won't be pleasant for either of you. You measure the tube from her ear to her belly button then put it down her nose. If she continues not to eat, you will have to come back on Saturday.

Me: Alright. And if she does eat? Do we bring her back in to remove the PICC line?

Dr. B: Yes. Just take her in to the clinic. Be in touch with us about what's going on.

We discussed a few more details, and I was sure to ask for orders for an additional blood sample for the Johns Hopkins study in which we're participating (it's so hard to draw her blood, we want to do it with the PICC line in). But looks like we're trying an experiment and taking her home tonight! Yippee! I sure hope she eats because I really don't want to come back!

Wednesday, July 22, 2009

Baby Discovers Her Appetite

Baby Bridgette had one ounce of milk this afternoon from her bottle. It was nice to see her open wide and drink.

I am watching babe while Kel takes some time off to rest and have fun. Bridgette sure is a happy kid, she is always smiling or clapping. She even remained calm during her bath! The surgeon assistant stopped by tonight and thinks we are looking at Friday as a discharge day. We sure hope he is right!

Seussling Gets a Bath

Bridgette's nurse accidentally dropped Seussling on the hospital floor, so Seussling got a bath on Sunday. After drying in the shower for three days, he (or she?) is now back in the crib with Bridgette while she naps.

A brief history of Seussling:

- We discovered Seussling on the modern cover of Dr. Seuss's If I Ran the Zoo.

- In the story, Young Gerald McGrew let's all the normal animals go and fills it with "beasts of a much more unusual kind."

- Seussling is not pictured or named inside the book. Therefore, "Seussling" is a temporary nomenclature until Bridgette comes up with a suitable permanent name. So far she just sucks on him... which is pretty hard to pronounce.

- If I Ran the Zoo is credited with the first printing of the English word "Nerd," an animal McGrew brings back from the land of Ka-Troo. And while I don't know if it's an island, it appears you have to sail there.

- You can watch the book here: Part 1 and Part 2.

Standing Still

I called Aunt Brenda last night and got an update on the dogs (who I miss SO much), and while talking, our conversation sparked a visual representation of our hospital status. I feel like we've been moving down the cliche-tunnel. And this whole time we've been doing one step forward, 3/4 steps back. And now, when we can finally see the light at the end of the tunnel, we've just stopped moving. We're staring at the exit making no progress at all.

Yesterday baby's temp was back up, and still no one knows why. Today it is back down, and no one knows why. They won't let us leave until it's stable.

But more importantly, baby has been cleared to drink formula, yet she's simply refusing to take it. The schedule to go home is the following -- 1 oz, 3 hours; 1 oz, 3 hours; 2 oz, 3 hours; 2 oz, 3 hours; 3 oz, 3 hours; 4 oz, 3 hours; 6 oz, 3 hours; 6 oz, 3 hours. Even though Dr. Black said she could start formula yesterday afternoon, 16 hours later and three separate attempts, baby just pushes the bottle away. It's like she's forgotten how to eat.

Jeff's going to bring some frozen breast milk later from the dregs of my pumping stores. We're hoping she takes to it because as things stand now, we're going to be here indefinitely.

Tuesday, July 21, 2009

Baby Snacks / Gram Leaves

Once again, we thank Mom/Gram for coming to help us with our little one in the hospital. She's flying home to Texas today. We had thought that Bridgette would be at home by the time Gram/Mom left, but we're glad that she's at least doing so much better. Mom/Gram has been a huge help and relief for us during Bridgette's stay, and we will miss her very much.

Gram/Mom and Bridgette spent many hours cuddling, including most of last night! :) Hope you can sleep on the plane!


Baby was able to sip 9 mL of grape flavored Pedialyte this morning, and she's kept it down as of noon. If she continues to keep clear liquids down today, she might be able to move to soy formula tomorrow.

Part of the problem with clear liquids is that Bridgette has always refused to drink anything but formula or water. And she's never really cared for water much either. They don't want to give her water on an empty stomach, so we're starting by feeding her liquids she typically refuses to drink anyway. And true to form, she is refusing them. They have a special grape flavored unction and added it to her plain Pedialyte, only because I mentioned she does like the taste of grape Tylenol. But she only nibbled at the 15 mL offered and mostly chewed on the bottle nipple.

Here she is sleeping with her legs crossed.

And here's baby today with her stomach pump out of her nose! YAY!!!

Monday, July 20, 2009

If You're Happy and You Know It...

Here is Bridgette enjoying one of the drawings her cousins sent to her hospital room. The works of art now adorn the outside of her crib, and the balloon my Dad's company sent her is floating cribside too. She likes playing with it.

Yesterday, Bridgette had more up and down. Her bile was less green for most of the day, and then it turned back into dark moss around evening. This morning she's been pretty clear and had two very full poopy diapers right in a row. The poo looks just like green/brown water.

The surgery team made rounds this morning and the head doctor made the decision to take her off the pump today. It's an experiment, one we've tried before with disappointment. So now we wait to see if she vomits. If she does, we turn the pump back on. (We're keeping the nose tube down just in case.) If she doesn't and continues to poop, then we will get to give her some clear liquids tomorrow morning after the surgery team assesses her.

They've also pulled her I.V., her I.J. (yippee!) and her tummy dressing. She still has three pinrose shunts to drain the incision sites (the shunts are called vesiloops and look kind of like yellow rubbery twisty-ties) and steri-strips to hold her sutures together, but her wounds appear to be healing nicely.

In the meantime, baby is intermittently sleeping, crying, and playing, like any baby would do. She's just doing it in a bit more discomfort than a normal baby and with all kinds of tubes and wires attached to her. Her lips are dry and cracking now, and she seems perpetually sore and reticent, in no matter what position she's resting or playing.

Just FYI, I wrote this entry last night, but when I went to publish it, the system crashed. I was far too tired and annoyed to do it again. So this video is from yesterday morning. I have no editing software here, so the clip is a titch long. Bridgette is pulling her cord, reaching for the camera, and clapping. If you're happy and you know it...

Sunday, July 19, 2009

Cords, Cords Everywhere, and Not a Drop to Drink

Maybe you regular followers can find the literary or musical reference in each of my titles. It can be our little game. I need some amusement after all, especially around 1 a.m. My friend Angela wins a prize for knowing the "Hot Dog" Disney song from the last entry.

This time, I was just thinking about how tangled Bridgette's cords get every time we pick her up, turn her, hold her. We have to unplug half of them to put her back in her crib.

And "not a drop to drink?" Well, that refers to Bridgette too. 12 hours after the last post and not much has changed. Baby is still having her stomach pumped (into day 6 now), and we haven't seen any more poop. Fortunately her temperature is still down, and her second set of blood tests also came back normal.

Bridgette can no longer have morphine or toradol, so her pain is only being controlled with Tylenol. Since I.V. Tylenol hasn't been invented, we give it to her orally and clamp her pump for 1/2 an hour while it absorbs. Of course there's always a small concern that her tummy will fill with enough bile during this time that she'll vomit, but there's not much choice. If we don't clamp the pump, then the Tylenol just gets immediately sucked up again.

Jeff and I had a great extended-date day. We thank Gramma Hoose profusely for sitting a 12 hour shift. She reported that Bridgette took a long nap on her lap, played happily with some toys in her crib, and shared quality bonding time with her grandmother. Jeff and I had time to nap, eat lunch out, go to a movie (HP-6), swim, shower and eat dinner. It was wonderful!

At lunch (California Pizza Kitchen... Mmm mmm mmm...) our server asked, rather perkily, "Where did you two go to get such fun pink wristbands!?" I'm afraid my response was both dull and dignified. After she left, Jeff suggested we should have said, "To the Primary Children's family theme park, where the main attraction is sitting in a chair while your child goes on a roller-coaster ride!"

Actually, being here is very sombering in so many ways. We are surrounded by babies and children who are all experiencing difficulties. And while Bridgette's case is more serious than some, it is considerably less serious than many. Car wrecks, tumors, surgeries, cancer, infectious illnesses, and very many unique cases. As Bri's surgeon said, "If you think you have it bad, step into the next room." Of course he meant it symbolically. (We would never step into the next room. Their baby is contagious.)

In fact, just two days ago there was a Code Blue announcement on our little infant surgery unit. It was room 3011, just 5 rooms down from us. Our nurses all ran, literally, down the hall to try to resuscitate the baby. (Just so you're not on tenterhooks like I was, they were successful, and the baby was moved up to the PICU.) I wandered down to 3011 once the excitement was well over and realized that the Code Blue baby had been in Bridgette's old room, the one she was placed in after life-flight when she was only 3 days old. There was something poignant about that. It just made me think about how everyone has experiences in life that, at the moment, seem impossible to bear. I wish I planned to follow up that sentence with some great elucidating maxim you could each use in Sunday School tomorrow, but I'm not. It's just life. If you think you're alone in your pain, you're not. There's a lot of people out there in pain. Being in a place like this sure changes your perspective in a hurry.

Saturday, July 18, 2009

Hot Dog, Hot Dog, Hot Diggety Dog

Bridgette is feeling much better today. All of her tests have returned showing no unusual trouble. Her potassium levels were low last night, unsurprisingly, but now that she's on TPN, they've gone back up this morning. She's still got a little bit of an unsolved temperature, but at least it's low-grade.

She still hasn't pooped again since that first day. The best explanation I've heard, which is still a bit of a guess on the part of the doctors, is that her terminal ileus woke up first and evacuated whatever had built up during surgery, including the blood that had collected from her staples, etc. That would explain why it looked brown. Her upper small intestine, including her duodenem and jejunem, may have still been asleep following anesthesia, and when we stopped pumping, it backed-up the bile that was being produced and dumped into her stomach. I can think of a few holes, or at least questions, concerning that theory, but whatever the case, we're just so pleased that things seem better.

The best news is that overnight the color of her bile became less dark green, and by morning, we were suctioning about 1/3 of the amount we were getting yesterday. We've been hearing constant gurgling and churning noises in her tummy, and that's also a good sign. This morning Dr. Black said that as long as she gets progressively better, even if it's slower than we first expected, we can consider that good news. He called the last 24 hours a "hiccup."

Here's a photo of Bridgette last night when Daddy came to relieve Mommy for the night.


And here's a photo of Bridgette this morning with less bile being pumped up. I haven't seen her toothy grin since before surgery day! Today she has been watching Playhouse Disney and clapping and smiling to the music. Even the housekeeper who came to clean our hospital room a few minutes ago took one look at her and said, "Oh good! Is she going home today?" Although the answer is no, we hope this good progress continues.

Gram is going to spend the whole afternoon and evening here with Bridgette so Jeff and I can go see Harry Potter, take a dip in the hotel pool, and maybe get a nap before I'm on for the night shift.

Friday, July 17, 2009

Today's Tests

Once again, we wish to thank so many of you for your interest in Bridgette's condition. Since we don't know what's wrong, the docs and nurses want to rule in or out a variety of illnesses and troubles. So, Bridgette has undergone a slew of tests today, some of which we have seen the results and others for which we are waiting.

Abdominal x-ray (KUB): no obvious bulges, loops, blockages, or strictures. This is a good thing.

Chest x-ray: to rule out pneumonia because she continues to run a fever. No results yet, but doubtful. Her oxygen is superb (canula came out last night), her lungs sound clear, and when they suctioned her nose for another test, she was clean.

PICC line insertion: for TPN and lipids. Baby hasn't eaten since last Sunday. We weren't worried about nutrition because we thought she was headed toward real food today. But with this step-backward, she needs to get some nutrition and fats as well as extra I.V. fluids. Her other meds can be given faster now, and blood draws will be easy. (Past draws have been nightmarish.) I was able to talk the PICC doctor into finding her vein with an ultrasound instead of flourescents since I have an issue with contrast dyes. Fortunately, it worked out just fine, and he was able to find a good vein with the ultrasound. The end of her PICC line is in her right atrium.

Urinalysis (soaked cotton balls): to test for glucose and bacteria. No results yet.

Urine culture (from catheter): to test for specific bacteria. No results yet.

Stool culture (from bag attached to her bum): to test for C-diff. No results yet.

Viral Resiratory Panel (from nasal suction): to test for flu and other respiratory viruses. Results pending.

Basic Metabolic Profile: blood test, especially for electrolytes. Results pending.

Complete Blood Count: white and red cell count, hemoglobin, neutrophils, and hematocrit. Results pending.

She also has continuous stomach pumping, lots of meds, and vitals every hour. She still has an I.V. and an I.J. (intra-jugular, in her neck), but we'll probably pull the I.V. now that she has a PICC line. I would prefer to pull the I.J. because she finds it so uncomfortable, but the I.V. has collapsed, so it's the obvious choice.

One good sign is that despite the output from her tummy, it has started rumbling and grumbling with fervor. You can hear it from across the room. That is a sign that her intestines may be waking up.

Waiting for News

The resident on duty came to see Bridgette about 1:30 a.m. and said her belly was pretty distended. This was no particular surprise. We started pumping Bridgette's stomach again around 2 a.m. and her bile output is extremely dark green and continues to increase as the morning marches on. This morning they emptied 135 ml after just a couple of hours of collection. The nurses are also worried and have ordered an X-ray to see if we have a new intestinal block. We're also waiting for the surgery team to do their rounds. Until those two things occur, there's not a lot for us to do but wait and watch her pump do its work.

Baby is resting fitfully, and she's pretty shaky and weak. At this point she hasn't eaten since last Sunday, and her body continues to take a lot of other hits too. She's been here long enough now to fear doctors and nurses, and when they come in the room her heart rate skyrockets and she cries whenever they touch her, even if they're not actually hurting her.

Thursday, July 16, 2009

Trouble

Bad news tonight. Baby has begun vomiting a lot, dark green. Not sure what is happening. Will be holding her and helping her through the night. Surgery team will reassess in the morning. For now, it's pretty ugly.

Three Good Newses


1st News: Last night, baby gave her first post-surgery smile. It only lasted a moment, and it wasn't for me, but Gram enjoyed a split-second of pure cherub.

2nd News: Bridgette was whimpering until 3 a.m. when her temperature finally went down. (It's back up again, now. It's been fluctuating a lot.) I put her favorite blanket in with her and she immediately sucked on it and stayed quiet (but awake!) the rest of the night. She had been chewing her lower lip to pieces but not anymore! This morning she's been more lucid than yesterday and has even played with a few toys.

3rd News: After the nurse shift change this morning, her new crew came in to take Bridgette's vitals. I stepped in to use the bathroom and when I came out they were checking her diaper. My exact words were, "What's THAT!?" They just looked at me funny before one realized I was serious. "Poop," came the answer.

To my credit, I wasn't expecting her to poop so soon, so to my horror I thought it was blood. But it was actually a blowout! (And she hasn't eaten in 4 days, so it's weird that that's possible.) She had sticky poo all up and down her legs, back and front, and there was a lot of it. I never thought I would be so excited to see poop! Her surgery team is making the rounds, and when they stop by, we'll find out if Bridgette can have the suction tube removed from her nose and stomach and if she can start with some clear liquids now that we know her bowels are moving.

Wednesday, July 15, 2009

Too Much Pain - Day 3

Yesterday, when she first woke up, Bridgette made a noise she's never uttered before. It was about the saddest sound I've ever heard in my life. I can only describe it as a cross between the mewling of a kitten and the bleating of a goat -- a soft, hoarse, keening cry. Now, almost 20 hours later, she's stirring every 5 to 15 minutes, fluttering her eyes and whimpering. There's not much we can do to help. I just try to gentle her back to sleep with a smile, a soft voice and her Dr. Seuss lovie.

We decided to get a hotel room for a week in Salt Lake City, so we could take turns getting some rest away from the hospital. It's located just a few miles down the road. After 48 hours, it was my turn to sleep, and I appreciate that Jeff stayed with Bridgette overnight in the hospital. Apparently her pain became very hard to manage between the hours of midnight and 4 a.m., so he really took a hit. She's on a morphine drip now.

Here you can see a little more of Bridgette's incision sites. She's been running a low-grade fever since sometime in the night, but that's not too unusual after a major surgery. She's receiving antibiotics to stave off infection, and she has two small shunts at her wound sites to allow drainage of anything unclean.


We have so many reasons to be grateful that I wanted to share a few blessings we've experienced as well. First, we are very lucky to live so close to Primary Children's Medical Center (PCMC). It serves children's specialty cases from all over Utah, Nevada, Wyoming and other surrounding states. It's only a 40 minute drive from our house. That's less time than some people's daily commute.

Second, PCMC is a great hospital that takes good care of both patients and parents. We are grateful to have a private room and to have the "Rainbow Cafe" downstairs with tasty food, healthy options, and low-costs. They even have a "hospitality cart" that comes around each morning for mommies and daddies who can't (or choose not to) leave their children's rooms for meals. It doesn't have healthy options, but it does have free food! After a long night, it's super to get a little refreshment.

Third, of course we are grateful for Bri's splendid surgery team. Dr. Black has over 30 years of experience with bowel surgeries, and he has really shown a lot of concern for Bridgette as an individual, despite his busy schedule. He takes the time to offer information and answer questions, and he's not condescending at all. As we were waiting for Bridgette to exit surgery yesterday, Jeff told me he's glad that Dr. Black takes his job seriously but also acts like her case is routine. I was grateful both he and Bri's anesthesiologist came out to talk to us personally both before and after the surgery. And Dr. Black even draws us pictures!

Fourth, we are so, so grateful for Jeff's good job and for our health benefits, without which we would not be able to pay for this surgery and Bridgette's medical supplies. I am also grateful that Jeff has been able to take time off to help. Not all daddies have that option.

Fifth, and certainly not last, but the last about which I will write now, we are really grateful for all the help we've been offered this week. My mom had been traveling for 1 1/2 months just prior to Bridgette's surgery, and I know she's tired, but she still flew back up to help us. We have several neighborhood children and family members who are helping take care of our two dogs (who I miss very much!) and our house while we are away. We have had offers for meals and visits (which we will accept at some point!) and we have had lots and lots of friends and family leaving us wonderful messages here on the blog, on Facebook, and by phone and text. Bridgette even got a new book from one of our neighbors the morning she came to the hospital. Thanks so much for your friendship, love, and constant prayers.

Tuesday, July 14, 2009

Sweet Little Face

Baby Bridgette is back in our private hospital room now, sleeping off the remains of her anesthesia. She stirs occasionally and opens her eyes, but only for a moment. She is still getting oxygen, but all her vital signs look terrific.

This picture shows the old stoma site (sewn closed) and the top of the vertical incision Dr. Black made to remove the colon and stretch the ileum down for the pull-thru. Dr. Black said that the whole length of the ileum coils around a considerably shorter vein that feeds it, so his one concern from surgery was that he couldn't stretch the vein down long enough to reach her rectum. He will be watching the last inch of her ileum to be sure it heals correctly because it might not have good bloodflow. The other entry point for surgery was through her rectum where Dr. Black used a stapler to attach the ileum. She also has a new I.V. in her neck.

Here is Bridgette this morning pre-surgery. She's really been a pretty happy baby through it all. Her skin is naturally sensitive, so her cheek is red from the tape that kept her nose tube in. Right now she's got tape everywhere, so I'm guessing she'll have lots of red blotches when we go home in a few days.

Daddy and baby alternately read her new book and watched TV this morning. They were pretty darn cute.

We got to carry Bridgette down to surgery, and she took her new favorite snuggly toy. We know it's a Dr. Seuss character, but I took off the tag before reading which one. Anyone recognize it? We'd like to know it's real name. We think it's an odd looking little guy, but she LOVES it.

We met briefly with Dr. Richard Black, her primary surgeon, and Dr. Matt Clark, her anesthesiologist immediately before surgery. They were good to answer questions, tell us what to expect when she woke up (what tubes would be where, etc.) and Dr. Clark even carried her in instead of putting her in the bed.

I asked if she had a hard time when we left, and he replied, "I hope this doesn't bother you, but... no. She was fine. She snuggled into my shirt, and when I laid her on the bed, she just looked up at me, kind of like, 'Why did you set me down?'"

Here is Papa when Bridgette came back to the room, and he saw her for the first time without her stoma!

Bridgette is Done With Surgery

Baby Bridgette is done with surgery after three hours. Dr. Black came to tell use that everything went fine. We will be able to stay with her in the recovery room in about 30 minutes!

Dr. Black mentioned that her colon was as thin as a pencil, I guess that's what happens to our muscles when we don't use them :)

Surgery Update

Baby Bridgette is doing great after 2 hours of surgery so far :)

Baby's in Surgery

Bridgette went in to surgery about 1/2 hour ago. Her anesthesiologist and surgeon met us outside the surgery room to answer any last minute questions and to reassure us that they'd take good care of our baby. I talked to Dr. Black about Bridgette's lack of mobility, and he suggested we get a complete neurological evaluation. He's also going to look around inside her for for any physical reasons that may have made it so painful for her to lay on her tummy.

We expect the surgery to take 3 to 4 1/2 hours, and we hope that we will get at least one update half-way through. They carried her into the surgery room in their arms, still gripping her "lovies."

Bridgette was noticeably tired this morning, but she was still such a good baby. She didn't cry at all except when they took a couple of blood samples. Her white blood cell count was high yesterday (probably from her immunizations on Friday), but they looked good today.

When she woke up, I did my very last bag change! She wore a cloth diaper around her tummy at night because she was still leaking out of both ends of her double-barreled stoma from her Go-Lightly and enema. Her skin was just too wet to attach a wafer. This morning her skin was pretty raw, so I went ahead and did one more bag to give her skin a couple of hours of protection and calm before surgery.

It's so different having this surgery than the one when she was born because she is significantly more lucid and can predict pain. She gives us pathetic "help me" looks when she's hurting and has even taken to gripping my fingers very tightly in her little fist. But she has spent most of the last day playing patiently (and watching more T.V. than she's ever seen in her life) and has even been smiley for the nurses.

Monday, July 13, 2009

End of Day 1

No food, check-in early, grumpiness for a few hours in her strange new surroundings, and then Bridgette's natural "tough" charm kicked in. All the nurses (and me and Jeff and Gramma Hoose too) were really impressed by how good and sweet and even smiley Bridgette was, considering what we put her through.

The I.V. team had a hard time finding a vein, and I think that was the worst part of Bridgette's day. She twisted and turned and cried and howled as they tried her feet then her wrists then her feet again. I discovered I am not a tough mom. I didn't actually cry in front of her, but as soon as I left the room, mommy turned into the baby. Daddy was very calm and helped Bridgette be brave.

From 3 to 9 p.m. baby had a nasal drip with 40 oz. of Go-Lightly forced through her small intestine. One of the surgeon's assistants called it "Go-Violently" which was apropos. We changed 14 maxi pads, 14 disposable diapers, and 26 cloth diapers that were totally soaked in Go-Lightly expulsions.

At 11 p.m. she had a rectal enema to try to clean out her colon. When we realized it was just 200 cc's of saline solution, we knew it would be no problem. We've done rectal irrigations every day of her life! We're just sad she had to stay up so late to get it.

Another difficult part of the day was that Bridgette usually takes two 2-hour naps plus sleeps 12 hours at night, but she pretty much had to stay awake until just now (11:30) with only a few snatches of sleep on our laps. As such, her mostly-happy self really was impressive.

Gramma Hoose flew in today to be with us during Bridgette's hospital stay, and we are once again grateful for her help. She sewed a couple of button-books for Bridgette, and as suspected, Bridgette loves the buttons!

And here she is sprawled out in "I'm-exhausted" position for one of her little naps. What a beautiful baby. We're so happy she's a part of our lives!

Thanks to all of you for your prayers, thoughts, and best wishes. We appreciate your notes, Facebook messages, phone calls, texts, and comments. It's meaningful to us to have your support as we go through another stressful transition in Bridgette's health.

Bridgette is Back at Primary Children's

We arrived safely at Primary Children's Medical Center this morning. Bridgette got her last milk for a while and is now on a clear liquids only diet until midnight. She will be having her intestine flushed out by having 40 ounces of a solution dumped into her stomach over the course of a few hours. For this she will have a tube in her nose that we hope she doesn't yank out.

Bri will be having the pull-thru surgery tomorrow morning. For those of you who have questions about her condition and what this surgery actually is, please see this link: http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/

We appreciate your thoughts and prayers, we are anxious to get this over with and move on :)

Saturday, July 11, 2009

Birthday Fun - Take 2

Thanks to everyone for taking photos for us and to Heidi for letting me take a few with your camera!

Usually, Ma Johnson provides the cake and ice-cream for each grandchild's first birthday, but in addition to her HD, we have discovered that Bridgette has some food allergies -- namely, dairy and eggs (so far). I found a recipe for egg free, dairy free, soy free cupcakes so that she could have a treat on her birthday, and Ma Johnson bought a cute princess cake for the rest of us to enjoy.


We had her party at a park down the street. The hill behind us provided loads of entertainment for all the kids. We had Subway sandwiches, chips, and cold water (yum!) not to mention the cake and ice-cream. Thanks to all the family and friends who came. We missed those of you who wanted to come but couldn't make it!


Sammie & Lili

Ellie (and both Grandpas in the background)

Singing happy birthday...

Her first taste of cake.

Bridgette was mostly mellow but not very happy during her party because she was pretty tired. (In fact, she almost fell asleep while we were opening presents.) This was a rare shot of her big grin.





Time for Daddy to clean her up!

She didn't like it one bit.

Bridgette enjoys her new gifts and has played with all of them at home since her party. Here she is reading a new texture book with members of the Bott family.

So, we were the last ones to leave the park, and when I got home, I found my parents and brother waiting outside our home. Amusingly, my brother had a key. He just forgot he had it, so they were stuck outside for a while.

Happy birthday, baby girl! Here is her first touch of cake.


And here were her last touches of cake. Despite the amount on her face, you can watch here what she actually did with it.

Declaration of Independence

We, the Hoose-Johnson family, hereby declare our independence from King George III.


And if you think this is cool (or even if you don't), you should see the 3D version with the barrels of our steely guns pointed between your eyes...

Wednesday, July 8, 2009

Happy First Birthday, Bridgette!

Our precious baby turned one today!

More photos later. But here's a "taste."

Independence Day Fun

We had a great 4th of July weekend. Aunt Lynn (for whom Bridgette was named, Bridgette ClaraLynn Johnson) was able to fly in from Cleveland, and my parents came up from Texas. Here we are at a BBQ in our backyard.



On Independence Day we went to a parade in the morning. This float was entered by Primary Children's Medical Center, and since Bridgette is having surgery there next week, I took a picture.

My brother helped "fly" the American Eagle. He told us to look for him, "I'll be the one in the bright green shirt."

We went to see Singin' in the Rain at the Hale Center Theater on Monday night, so I included this photo from the parade too. We really liked the guy who played Cosmo (please see yellow arrow). He was very talented.

I got to print my own Declaration of Independence at the Crandall Printing Museum on a Benjamin Franklin press. I found it difficult to pull the lever as far as the expert encouraged me to do.


Bridgette and Lynn became fast friends. And Chewy did not miss out on the lovin'. We were so glad to have Lynn visit us.

My family all attended Stadium of Fire that night along with Jeff's sister, Karla. Jeff wore earplugs. He was smart. Not only were there two wild and crazy fireworks shows (including lots of fire in the stadium... thus the name), but we also saw the Jonas Brothers perform. It was noisy because almost 40,000 people were screaming like little girls between and during every song.

Here are a lot of performers. Performing.

The climax of the show was a reverential retirement (which means it was burned) of this gigantoid flag which has been used in the show for over 10 years. They normally unfurl it across the whole field. It was also flown during the SLC Olympics.

Lynn agreed that the show (and the little girls) ... (and the people who acted like little girls) were very loud.

Heidi and Jeremy were kind enough to watch Bridgette while we were at the show. Heidi took the next two shots which are simply adorable.


On Sunday we went on a picnic in the mountains. Bridgette was tuckered.




Here she is about to completely melt down.


Bri opened her birthday gift from Lynn on Monday morning. A Dress Me Emma doll! Bridgette likes it very much. She especially likes the bear. She tends to eat it. We had plenty of bear-munching photos from which to choose for this blog entry.




Monday night, as prehithertofore mentioned, we saw a delightful production. The production included real rain on stage. And since it was theater-in-the-round, the audience got quite wet. Highly amusing.

Little Bridgette with Aunt Lynn.



Eagle spinning & flapping, Stadium of Fire dancers (mostly kids), Jonas Bros screamers, and a short clip of fireworks to the tune of Defying Gravity.