Thursday, July 31, 2008

Bag & Blessing

Bri, on her dressing table, getting ready for an ostomy bag check. Seems like everytime she has been laid on her back during her lifetime, she has experienced pain. Only in the last few days has she begun to remain calm when we prepare for diaper/bag changes. We're so proud of her.

Checking out the blinking light on the camera. Bri seems exceptionally interested in life and the sights and sounds it offers. She began seeking out specific noises during week one. She would look at her hospital monitors when they would beep.

Just hanging out!


We have our first bag success! We hope it's not a fluke! By using a combination of products from different companies (which would no doubt be disappointed if they knew we were mixing and matching their products) we finally got one bag to stay on for over 24 hours! This is the first time in almost a month.

Can you believe Bri will be a month old next Tuesday? And still smaller than when she was born...

The wafer that is attached to her skin (to which the bag is then attached) is starting to peel off now, but for some reason it hasn't leaked yet. I'm sure we'll have to change it out soon, but having the bag work for one full day has made life seem doable. Since bag changes take 1-2 hours apiece, this is the first day we’ve been able to change her diaper and empty her bag in the few minutes that a regular diaper change takes, instead of laboring nearly a third of a day over those miserable bags. With the bag working as it should, we just whip off the wet diaper then suction out the bag with a syringe - practically like normal people!

Bridgette is also moving towards a three hour feeding schedule, eating more at each feeding. This simplifies life too. She hasn't yet mastered the differences between night/day, so we are often holding and entertaining her during the wee hours. But at least this is just a typical baby activity and represents an adjustment to parenting that is not abnormal.

As to Bri's baby blessing -

Jeff will bless her at our 9 a.m. meeting, and as mentioned in an earlier post, anyone interested in attending is welcome! Our church is the Lindon Central Stake Center located at 56 E. 600 N. in Lindon. We intend to leave the meeting directly following the blessing.

If you would like to join us, drive to Lindon on State St., turn east on 400 N. or 800 N. then turn again on Locust Ave. This is our street. Then just find 600 N. and turn east again. This is the street on which you'll find our church building.

We are considering hosting a picnic in our backyard that evening for anyone who would like to visit. If we do have a picnic (and we'll let you know soon), it would be a "bring-your-own-picnic-food-and-chairs-or-blankets" kind of affair.

Monday, July 28, 2008

Home... again.

"Kangaroo Care" - This is Bri's favorite way to snuggle.

Practicing martial arts? Artemis's newest archer?


The baby's perspective. Bri loves this swing that Sarah let us borrow. And anything that Bri loves this much, mommy loves too.

After round two and three more days at the hospital, Bri came home again tonight with much less fanfare than last time. Her skin has already started to heal up, and we have found a new ostomy bag that we hope lasts for longer periods than her old ones.

We learned from the surgeon that one reason ileostomy protection is so important is the amount of stomach acid and pancreatic juice that is excreted with her stool. Having acid and bile sitting directly on her skin eats away at it with much more gusto than what causes normal diaper rash.

Bridgette has yet to put on any weight and currently weighs approximately 12 oz less than when she was born. The surgeon has also told us she will likely deal with malnutrition issues her whole life. Bri is doing her best to buck this suggestion by eating every 2 hours at a minimum... and sometimes every 15 minutes. While this is difficult for mom, we certainly prefer it to her prior inability to eat anything. We're praying she puts a little fat around those tiny bones of hers as quickly as possible.

Kelly is about to pass out from exhaustion. She also finally got herself to an IHC Instacare doctor down in Lindon yesterday and was diagnosed with a UTI that has infected her kidneys. Treatment has begun, and we hope it clears up quickly.

Jeff got a little break today then came back to SLC to drive his family home.

As a sidenote, we are planning to do Bridgette's baby blessing this Sunday, August 3rd, at 9 a.m. We invite and welcome anyone who wants to attend, and we'll give directions to our church in a subsequent post. Jeff and I plan to take her home once the blessing is complete, but we would be happy to chat with anyone (reverently, quietly) prior to sacrament meeting.

Sunday, July 27, 2008

Baby Goes Back to the Hospital

The area around Bridgette's ileostomy has become extremely red and nasty looking, so we took her back to PCMC tonight. She will be there until at least Monday. They are going to try and get the skin looking better and find an ostomy bag that does not leak after two hours. Bridgette has been a very good baby and has not complained a bit!

Dr. Black will be examining her on Monday for the hernia of her stoma as well. Thankfully the hernia goes away when she stops crying, so hopefully he will give the thumbs up on letting her go home. We sure hope we can come to a good solution so she can live at home and have a great first year of life.

Saturday, July 26, 2008

Baby Bridgette Update #12

A bath at home.

Her stoma area is very, very tender.

Jeff and I keep wondering whether to take Bri back to Primary Children's for this or that... the list is somewhat long. Her skin is now so red and tender around her stoma that she literally screams anytime we have to touch it, and sadly, we have to touch it often. We're not sure how to make the skin breakdown stop. Any ideas, anyone?

She has her first check-up with the pediatrician on Monday where we find out if she's gained any weight this week. Hopefully the doctor will also help us determine whether she needs to return to the hospital too.

The good news is that both mom and dad got about 5 hours of sleep last night, and I got another 2 hour nap today. It's been wonderful.

Thursday, July 24, 2008

Settling In

We have now been home from the hospital for a few days. Baby is doing OK. We have switched from ostomy bags to using cloth diapers and pads. Hopefully the switch will help lesson the annoyance of changing a bag every six hours. Baby is a little dehydrated so we are giving her a special baby solution with lots of water and electrolytes. Her little intestine is also sticking out a tiny bit more than normal. We hope she does not have to go back to the hospital.

Many have asked what you can do to help our family and we sure do appreciate your offers. Thank you for the meals and kinds words. We will definitely post on the blog or contact you specifically if we think of some things that would really help us out.

In the meantime your prayers and support are continually appreciated.

Wednesday, July 23, 2008

Baby Bridgette Update #11

As yesterday was auspicious, please enjoy a plethora of photos that document our excitement.


A little conversation with mom about going home.


Resting with daddy while we wait for discharge.


The last of the wires & tubes comes out - her PICC line.


Happy, hungry, and ready to get dressed in her own clothes for the first time.


This is the same outfit in which Kelly went home from the hospital 29 years ago. It's quite large on little Bri.


Bri's last hospital feeding.


So tiny!


First car ride... if you don't count the ambulance.


She seems to enjoy her carseat, as a whole.


Bridgette looking around at her newest environment.


Curiosity waning...


Car rides are hard work.


Welcome home, Bri!


Chewy & Piper really wanted to give the newest member of our family some friendly kisses.


What good dogs.


Family photo #1 - The Johnson Pack


Family photo #2.


Bri's first nap in her own crib.


The hospital tags finally get to come off.

As Bridgette's Aunt Lynn aptly noted in an email yesterday, "Tuesdays seem to be the day of the week for big happenings." She's right. Tuesday #1: birth. Tuesday #2: surgery. Tuesday #3: discharge from the hospital. We smiled for hours as we brought baby Bri to our home!

She's a good little girl, but mom & dad soon discovered that the clever care-taking we learned at the hospital is extremely difficult to do at home. Many tears were shed by all three of us as we were frustrated by one failed ostomy bag after another. We even had trouble with her irrigation which is supposedly simple. And of course, none of us slept. Well, Bri did. Occasionally.

We'll be calling the surgeon today because we're concerned that the trouble we experience may stem from a more serious issue... a herniated and slightly prolapsed stoma. If this IS the case, Bri is not finished with surgery. If not, then we simply need to find a better alternative to the ostomy bags we are using. They are evidently not created for infants. Jeff's been doing a bit of online research and has discovered that we are not the only ones with infant ostomy woes. It would seem no one with an infant ileostomy has found a superior solution.

While we figure all of this out, we appreciate that many of you would like to visit us. We hope you continue to feel this way! For the time being though, we need to work out personal schedules, medical needs, and take as many snatches of rest as we can manage. We'll make a post here when we're ready for you to meet our little girl!

Thanks for all your continued support. In many ways, we feel we need your prayers as much (or more) than ever.

Monday, July 21, 2008

Baby Goes Home



Tomorrow baby Bridgette will get to go home! We are excited to bring our daughter home and to see her grow up. She is a very good baby and we are glad that she is doing so well. Grandma is going to be staying with us for a few weeks to help us get adjusted to our new lives.

Sunday, July 20, 2008

Some Firsts...


Daddy's first time to help bathe Bridgette.


Bri's introduction to her "slumber bear" which makes womb noises. It helped her to sleep when she was restless with hunger.


The bear is currently the same size (perhaps a bit larger) than Bri.

Today we have helped change an ostomy bag, received rectal irrigation instructions (although we haven't done it ourselves yet), and Jeff got to help change his first diaper and give Bri a bath. Tonight Jeff will perform a rectal irrigation since he's going back to work tomorrow. Although I've already helped bathe and change her, I will get my chance to practice rectal irrigations on Monday (...and forevermore. We learned today she must have 3 a day to keep her colon clean and prevent infection.)

Just as a matter of interest, Bri is up to 35 cc's of breastmilk now and will get 40 at 9 p.m. She has to reach 55 cc's before she can come home.

Here's a cute video of Jeff drying baby off after a bath and giving her a fresh diaper. What a good daddy.

video

Saturday, July 19, 2008

Baby Bridgette Update #10














15 cc's...

Much progress!

As of 6 p.m. tonight, Bri is up to 25 cc's. At this rate of increase, and if she is able to continue to stool and eat properly, she could come home as early as next week - perhaps even early next week. (Monday?)

Part of whether she is ready to leave the hospital is dependent on how much training mom and dad can cram in quickly. None of the nurses or special teams scheduled training with us until today since no one expected Bridgette to be home bound this early. Tomorrow we hope to be able to practice changing the ostomy bag, doing rectal irrigations, and seeing whether Bri will breastfeed again. We also want to ask the surgeons a slew of questions as well as meet with a geneticist about the potential of this health risk occurring in a second child.

Jeff and I visited our home today in Lindon. It was my first time home in almost two weeks, and it was great to see the dogs, do a little laundry, and eat the food that we normally stock instead of that of restaurant ilk.

It feels a little empty after all this time to arrive home without a baby in tow. But her nursery is prepped and ready when the stars align.

Thanks again for all your support. We have been constantly bouyed by your messages of love.

Friday, July 18, 2008

Baby Bridgette Update #9


Bri's ostomy bag gets changed again. Here you can see the purple knob sticking out from her side. That is her stoma, a piece of her little intestine. This squirts out the poop that the bag is supposed to catch, but so far, all of her bags have been leaky.


Bri enjoying her first post-surgery meal.


Daddy feeding Bri 10 cc's of breastmilk. I love this photo. They're both so cute.



Well, I'm writing this from the hotel while daddy watches Bri all day. I am feeling much better than last night, but I'm spending the day resting & recovering before going back to the hospital.

Grandma reports that Bridgette really enjoyed her first bottle with that tiny bit of milk. She guzzled it down and fell right asleep. Feedings continued through the night and by morning, Bri realized what a small amount 5 cc's really is, so she got a bit cranky when there wasn't more. This morning Jeff got to feed her 10 cc's, and (oh we hope hope hope) if she doesn't get sick, that amount will continue to increase.

Thursday, July 17, 2008

Kel's Tummy

Looks like Kelly caught whatever I had. I hope she can get better really fast, but in the meantime her poor tummy is not doing very well. We just hope baby Bri and Grandma do not catch it.

Thanks again everyone for your love and support. Our burdens have truly been lightened just by reading your kind words and knowing you're praying for us.

Baby Bridgette Update #8


You can see Bri's ostomy bag here, with her stoma (a little piece of her small intestine) sticking out. She looks like she has a cast because they've wrapped her PICC line arm up to prevent it from being pulled or getting wet. She loves to be swaddled & held and really hates being unwrapped.


Mom and Bridgette try to catch some Z's.


Three generations. Bridgette's birth completes a 5 generational direct living chain as she also has a great-grandmother and great-great-grandmother (93 years old) on my mom's side. They live in Ohio.

For those of you have been checking, sorry to keep you waiting on this entry. We are, understatedly, busy.

Bri is steadily improving. Last night during Jeff's shift (for which Bri stayed awake all night) they were able to remove her nose tube. She is still getting lipids and TPN through her PICC line, although she is almost off her pain medication. She scrunches up her little face when she's hurting.

The good news for today is that Bridgette seems to continue to recover faster than expected. She will get her first, post-surgery meal tonight: 5 cc's of breastmilk from a bottle. She'll continue to get 5 cc's every 3 hours if she does not vomit. If all goes well, they'll up her intake tomorrow.

She may also get to come home earlier than expected. We take things a day at a time, sometimes minute by minute, but now the doctor is saying perhaps 1 to 3 weeks before her return home.

My dad, Grampa Hoose, left for Texas today to go back to work. We really appreciate all he's done to help us - finding us a place to stay, meals, Priesthood blessings, staying with Bridgette at the hospital, and emotional support.

Grandma seems very strong, considering how many hours she's spending at the hospital. Dad, Jeffrey, is extremely resolved to do whatever is needed to take care of Bridgette. Mom is the only one who seems to be waffling at the moment. I have hit what I call my personal "panic wall." After watching Bri's first ostomy dressing change last night, I realized just what we're going to go through over the next year. I've been quite unable to sleep or eat recently, the little sleep I get is riddled wih nightmares, and I'm afraid my emotional and physical states are catching up. Add to that postpartum recovery, and I can only say that I have felt overwhelmed the last few days. Hopefully Bri and her other caregivers will be patient with me.

Tuesday, July 15, 2008

Baby Bridgette Update #7

After 2 1/2 hours in surgery, baby Bridgette is in recovery, but our news is not the best. She has Total Colon Hirschsprung's Disease, or in other words, her entire colon (large intestine) doesn't function. It will have to be removed when she is strong enough, perhaps in a year.


For now, Dr. Black performed an ileostomy. This means that her colon has been completely bypassed and her ileum (small intestine) is now what is attached to the sack on the outside of her body. We haven't seen her yet, but my parents described the sack as 4" long and 3" wide. Grandma is taking pictures at our request.




The positive spin is that the ileum is where nutrition is removed from food, so she should still grow and develop. If she had had Total Bowel Hirschsprung's Disease, meaning both the colon and ileum were affected, we don't know if she could/would have survived. A small portion of her ileum also had no nerve endings, but it was relatively small.



The only reason she had ever been able to pass anything through her colon is because her ileum was working overtime. It is normally the circumference of a little pinky. They said hers was the size of a garden hose. Eventually the pressure from the ileum pushed the fecal matter through her colon and out of her body.


If a colostomy had occured as we expected, we could have taken Bri home in 2 to 3 days. Now it appears she will be at PCMC for 3 to 4 weeks.


A nose tube has been replaced to suction her stomach during recovery, and she is on pain medication. She will soon have a new PICC line, so she can receive nutrients and lipids in a central vein. The intent is to at least stabilize her weight if not help her gain a little. They will keep the normal I.V. line for antibiotics, etc., as well as wires and instruments to track her blood pressure, oxygen level, breathing and heart rates. We're hopeful that she can return to eating in 3 to 4 days.


We've been told this first year will be very difficult as we watch to be sure the colon does not become infected. We will have to perform continual rectal irrigations as well as other related care. It will be a challenge, but we will do our best to help her have a normal life.


Jeff and I are, of course, highly emotional right now. We've done our fair share of crying over the last week, and a lot of those tears came today. But, now that we have some answers, we are resolved to do whatever is necessary to help this little girl thrive.


Bri, herself, seems determined to thrive as well. After such a long, intense surgery, the nurses were all surprised that she barely spent any time in recovery. She has already been moved back up to her room where my parents are with her as she wakes up. I could hear her making post-surgery baby noises in the background when they called.


Although Jeff really was quite sick, he is on the mend. I never actually got sick, so if I'm fine tomorrow morning, I will most likely get to see my baby again soon. Jeff may have to wait until Thursday.


In the near future, we have a lot to arrange. Jeff is not sure how to handle his work schedule (he changed jobs the day before Bridgette was born) and finishing my master's degree has suddenly become iffy. We will wait to see how the next few days and weeks shake out as we prepare for our new life.

Update #6: Happy first week, baby?

Grandma & Grampa say goodbye to Bri before she goes in for surgery.

Bridgette is officially one week old. She's celebrating by having surgery. Her biopsy came back positive, so she's in right now having a colostomy. We're waiting for the call that says she is finished and OK. So far we've had one call to say they're still doing biopsies. She has been in for 1.5 hours, and they expected to be completely finished at that point. We don't know what is taking so long.

In case you are unfamiliar with the procedure, a colostomy includes doing multiple biopsies to see where the nerves end in her large intestine. These are the nerves that aid stricture and relaxation and help push food through her bowel. The section that doesn't function will be cut off or otherwise blocked and the good part will be pulled through an incision made in her tummy. A bag is attached to this piece of intestine and all her digested food will be emptied into the bag. She will wear this bag on the outside of her body for about 8 months, after which she will undergo another operation to attach the good intestine to her rectum. The most intensive follow-up care will last at least 3 to 4 years, although there may be some amount of care her entire life.

Mom and dad are pretty miserable today. Jeff got really sick last night and was vomiting, etc. We're hoping it was food poisoning, but just in case it is easily transmittable, both Kelly & Jeff have sequestered themselves in their hotel room down the street from the hospital.

There has never been a harder day to be away from our baby.

Grandma & Grampa Hoose are taking care of our little one and are calling us regularly with updates, but we feel particularly helpless as she goes through this procedure. We didn't even get to say goodbye to her. We didn't want to touch or kiss her because there could be no worse time for her to become ill with a tummy bug: pre, during, and post-surgery. We're pretty depressed and despondent right now.

Grandma said that Grampa Hoose gave Bri another blessing before surgery, and they both feel sad for the situation but very positive. It's amazing how much I am relying on my parents' feelings of hope in these early days of my own parenthood - today especially. I'm very grateful they are here.

Bri got two more meals before she went with the infant anesthesiology team. She seems to have a much easier time with a bottle because she has spent the last week being pacified with a pacifier that is shaped exactly like a bottle's nipple. I hope someday we can move back to breastfeeding.

She also pooped one more time on her own, so it may be that not much of her colon is affected by Hirschsprung's - and the less the better.

Thank you again for all your phone calls, blog comments, emails, thoughtful gifts, offers to help, prayers, and compassion. We ask for your continued prayers for baby Bri.

Baby Bridgette Update #5


Well, it took over 12 hours, but Bri finally ate her second meal around 9 p.m. I was so worried that her first meal had made her sick again. She went back to her early habit of sleeping all day with no interest in anything else. But, a sponge bath in the evening (which she once again hated) apparently woke her appetite. Bridgette lost more weight again today, so I'm hoping she eats all through the night. Amazing how worrying that your child might die makes you so grateful for dirty diapers and 2 A.M. feedings.

As to diapers, there were no more poopy diapers today, but we did hear her pass gas a few times. She has been significantly bloated with gas this week which has been another major source of her pain. In her x-rays, you can see her intestines are completely distended with it. So, anything her body can expend on its own is a major step.

Because she has permission to feed, mom is taking her first "official" night watch. So far, baby and I have gotten some very quality snuggle time. By morning I assume that will be quantity snuggle time too.

In case her biopsy comes back positive, Bri's surgery was pre-scheduled for 2 P.M. Tuesday, so I was told I couldn't feed her after midnight tonight. Can you imagine not eating for 6 days, losing almost 1/7 your body weight, being given one meal, and then having feedings revoked again? This, of course, made me very sad. But one more lovely piece of news to share! Her surgery time has been moved to 4:15 P.M., so I get to feed her until 10 A.M.! Now I wait to see whether she will indeed reward us both with hunger pangs throughout the night. A mother can hope!

Monday, July 14, 2008

Baby Bridgette Update #4

... a bad night, but so far a great day!




Daddy kisses baby before he goes back to work to figure out how many more days he can get off.






Bri is awake and content after her first real feeding! What a gorgeous baby...




Today's news:

Bri's TPN line (the way they were trying to get nutrients and lipids into her little body) kept making her veins swell, despite the low flow-rate. So, last night they had to give her yet another I.V. She's had them in both arms, through her belly button, and now her feet. They even attempted at one point to put an I.V. in her head, but her head wasn't very receptive. Then they took away the nutrients and put her back on straight saline solution. She was in pain and super hungry and cried almost the whole night. Grandma Hoose stayed with her and took the hit. We're grateful for her patience and hope she gets some good sleep today.

We passed Grandma Hoose at the elevators on our way to the hospital this morning and got the update. Finding out about the set-backs started mom on an emotional note. Bridgette's lost quite a bit of weight already, so we were extremely disappointed she was back to hydration only. And of course, no parent wants to hear that their child cried all night long.

When we arrived at the hospital, it was just in time to meet Dr. Black, Bri's surgeon, for the first time. He did the biopsy, for which Jeff left the room. He's having a hard time watching his brand-new baby girl be put through so many painful situations. We should get the results by tomorrow afternoon. If she is positive for Hirschsprung's, her operation will occur tomorrow or Wednesday.

The good news is that when Dr. Black arrived, he gave permission for Bri to start breastfeeding! At 8:30 a.m., Bri ate the first meal of her 6 day life. Six days is a long time to go without food, but she was also brand new to breastfeeding, so the first few minutes were a little tough. She got the hang of it though and snacked off and on for about 15 minutes.

She has slept peacefully ever since EXCEPT when she had her first natural bowel movement! Who knew poop could be so beautiful? We don't know yet whether she really did it on her own or if it was because of the stimulation from the biopsy. Either way, she has been comfortable all morning with a full belly and an empty bowel. The next hurdle is to wait to see whether her stomach digests the milk or if she vomits again. If she gets hungry soon, we are guessing it has moved on through, and we'll try a second feeding. She will continue to get routine rectal irrigations, just to be sure her new sustenance doesn't get backed up and make her sick again.

On a cute/humorous note, despite her tiny size and her rough start in life, we've noticed that Bridgette's quite strong. She got a sponge bath last night (which she hated,) and she almost completely rolled over to get away from the nurse who was trying to wash her. And when Grampa watched her two nights ago, he wrote this in his log, "3:15-4:00 a.m. - I can too get out of this swaddling. Just watch me."