Day 60- Hungry but having fun

It seems that right after I wrote that No News is Good News we started to get some not so good news.
Each week they draw blood to do labs they check many things but once again his inflamation was up (CRP test). That indicates something isn't quite right so they look for infection. This is when they do the blood, urine, spinal tap, and picc line tests to see if the infection is in any of these areas. At this time they also started him on really strong antibiotics so they were one step ahead of whatever was going on.
I refused the spinal tap because of the risks I learned about last time and because in my heart I felt it wasn't the issue and he seemed to be doing good (no fever etc). Well none of the tests showed anything significant so they tested his wound (day52) the next day they called me at 7 am to tell me the culture grew staph. So it was a good thing we had already started him on antibiotics. About an hour after I got to the hospital he threw up but it wasn't a normal throw up and they wanted to do some xrays of his belly to see if it was something to be worried about. They decided to stop feeds for the day. However by the end of the day between the xray, a distended belly, the throwup and bile not passing through his system they decided to treat it as NEC Necrotising entracoloitis. A disease of the intestines that can be pretty bad. To treat this they use antibiotics and stop feeds. They decided a 10 day course of treatment would be good. That means 10 days no food and then we start back at the begining of reintroducing feeds to him at a small amount (blast we had been up to 39mL). They also put an Anderson Tube back in his stomach to drain the bile since there is a blockage in his system and it isn't making it through.

With the Anderson (day 57)

Since they supspended feeds he is back to getting all nutrients (TPN) through his picc line. But that day the picc line clogged and they couldn't unclog it so they had to replace the picc line (put a tube in his vien and thread it all the way up his arm to his heart).
They also had been finding for the last couple days his red blood cell count was down and the iron they had started wasn't helping so he got a blood transfusion that day as well.  That was quite the day for us. But through it all he has seemed really good. (This all happened on the 17th, Day 53).

 Today(9/25 day 60)has been great, they removed the Anderson tube since his stomach is now passing the bile through his system.  The fun part was that the developmental therapist came and we put a mat on the floor and got him out of the crib to play for the first time. It was really fun we got the toys out and had a great time. It was really refreshing to see him hanging out like a normal baby. I love these fun good days. He is doing great. On Saturday they will do another x-ray of his belly. If everything looks good we will stop the antibiotics and Start him on food AGAIN!!! We will have to start slow but that's ok. He is the biggest baby in our room. We look forward to more progress. We are  hoping to have him home by Halloween.

Debbie the Developmental Therapist (day 59)

Playing with Toys

No news is good news- 7 Weeks (Late published)

Editors note: Jennie asked me to publish this over a week

ago with pictures and I didn't get around to it.  This is an old post and more has happened and I am sure Jennie will update it soon.

No News is good news.

Sorry it has been so long since we have given an update but in this case no news is good news.

He is doing great. He is  just as adorable a can be. Bridger is completely off oxygen support. He is currently working on eating more.


They give him just over 50% milk then the rest of his nutrients (TPN) is given through his picc line. So he gets 36 mL just over an ounce of milk every 3hrs. He takes 50% of his milk by bottle/nursing😃. He gets gas pains but he is pooping well.
He was totally off his meds for a day or two but then we decided he still needed to be on a low dose of morphine, he tolerates eating better with it. And since the TPN is hard on his liver he got another medication to help out there.  Overall he is doing really well.

Unfortunately I haven't been able to see him since Thursday.  Carter and I got that nasty cold that is going around. I had to take Carter in to his Pediatrician on Friday because he was having some respiratory problems (not unusual for Carter). He got a breathing treatment and is doing great.

Looks like Mr Bridger will have a few more weeks in the NICU (2-6????). But as always we are excited about the progress he is making. Tomorrow will be 50 days of this adventure.
Its crazy to me because everything was so different with Carter. By this time Carter had been swimming, to a rodeo, boating, on a road trip to AZ, and tried Ice cream and a sucker (spoiled by Great Grandma Taylor). He had so many different experiences than Mr Bridger. I still think he'll be a newborn when I bring him home but he is sure getting bigger. he is almost 8lbs now.  But wow I cant believe how they look the same to me.














Carter with Dad








Bridger with Dad















Bridger's Steps of Progression
✔️= done ➖= in progress

✔Intestines put in Silo (day 1)
✔Closure Surgery (day 12)
✔Off the ventilators (day 21)
✔Held by mom and dad (day 21)
✔Weened off sedation (day 23)
✔Weening his pain meds
Off paid meds
✔Weening his oxygen support
✔️Off oxygen support (day 41)
✔Hear bowl sounds (tummy grumbles)
✔Poop
✔️Introduce food(day 29)
➖Tolerate food (digest food)
Increase foods to full feeds (60mL)
Remove Wound Vac
➖Nursing
Take our baby home

The Rollercoaster Week

I have to tell you we have been on a bit of a rollercoaster this last week. Are you ready for the play by play??? Ok here goes.... first I will list all Health Care Personnel as NICU.

Day 33 I come in to find out little Bridger HAD (past tense) a fever for a couple hours at night so they want to check for infection. And they are going to suspend his feeds until further notice.

NICU: We are going to check a bunch of different tests including an LP to see if he has an infection in his body.
ME: What's an LP?
NICU: Spinal Tap, We will pull spinal fluid to see if there is any infection that may affect the Central Nervous System.
ME: Ummm, can I refuse this test?...... (I'm feeling super uncomfortable about this).... But, I went ahead and gave consent for them to do the test.

They do the LP...........12 hours Later

NICU: We have found a bacteria in the Cerebral Spinal Fluid (CSF). We will start some heavy duty antibiotics and do another LP tomorrow to see if it is real and if there are signs of Meningitis.

DR GOOGLE: Bacterial Meningitis- treat with antibiotics-  Prognosis- brain damage, seizures, hearing loss, hydrocephalus. YIKES!!!! (I was starting to regret looking to Dr. Google).

ME: What kind of bacteria did you find?
NICU: Staph (found in skin and in hospitals, strange to be found in the CSF, the sample could just be contaminated)
DR GOOGLE: Staphylococcal meningitis (SM)- even with treatment there is a very high risk of death.
ME: YIKES!!!!!!!!  (We start praying really hard for a contaminated sample)

Day 34
They try to do another LP they poke him 2x but they cannot use the samples because they have blood in them. They will try again the following day. Still no signs of a fever or any other signs of meningitis.

Day 35
They don't think they will be able to get a clean LP so they will try the following day.

Day 36
Again, They don't think they will be able to get a clean LP so they will try the following day. However they will let us start again on feeds since he seems to be doing just fine.

Day 37
NICU: Today is the day we are really going to do the LP today.
ME: OK, I want your most experienced person to do it and to get it right today.

The first time they tried he was moving too much (If he moves during it and they hit a bad nerve he could become paralyzed).So they decide to sedate him and try later. I left to go play with Carter for a little bit, I told them to call me after the LP and when they get the initial results.

Hours pass, NO CALL. So I call them.

ME: Um... did you do the LP
NICU (nurse in training): Oh yeah sorry I forgot to call you and then we went to lunch. Im so sorry.
ME: OK, well any results???
NICU (nurse in training): Yes.... Hesitation..... they don't look good... they have been reported "CRITICAL"

My heart drops, I was so confident the initial test was bad. He seems perfect how could this be. I ask further questions but she doesn't have any answers. She will have a Dr call me back..... I was freaking out... The Dr called and I missed the call while dropping Carter off at Grandmas. I call back and we decided they will review the results with both Jordan and I when we arrive. Jordan and I rushed back to the hospital in complete silence with a pit in our stomachs.

Not long after we arrived we spoke with the Dr and found out that the critical label on it was only because it had a little bit of blood in the sample.  He is just fine. NO INFECTION. WE ARE SO HAPPY.

ME (TO TRAINEE NURSE): I could throw my shoe at you right now. I'm so glad it wasn't as bad as you made me think it was on the phone.

Of course she totally apologized for freaking us out. I forgive her, we have a mutual friend so we can be friends after this and we can now laugh about it all. But yikes.

Day 38 (today)
Culture is still looking good. We are thrilled. They placed a feeding tube today so he can get more food, since he is not eating as well as he was last week.  But that is totally manageable and not a big deal.

Bridger's Steps of Progression
✔️= done ➖= in progress

✔Intestines put in Silo (day 1)
✔Closure Surgery (day 12)
✔Off the ventilators (day 21)
✔Held by mom and dad (day 21)
✔Weened off sedation (day 23)
✔Weening his pain meds
Off paid meds
✔Weening his oxygen support
Off oxygen support
✔Hear bowl sounds (tummy grumbles)
✔Poop
✔️Introduce food(day 29$
➖Tolerate food (digest food)
Increase foods to full feeds (60mL)
Remove Wound Vac
➖Nursing
Take our baby home

Introducing Food

 Lots of fun progress has been happening since my last post.

Introducing foods (DAY 29)

Sunday evening they decided that he was ready for food!!!! This is a big step for him. Because he hasn't had any food yet; they wanted him to take it nice and slow. For the week in advance they had told me it would be administered by a feeding tube. But Sunday Bridger got a new doctor that thought he could handle swallowing and allowed us to feed him by bottle. I know that doesn't seem like a big deal, but to me it was a big deal. Many of the babies here become lazy and dependant on feeding tubes because they get the nutrients they need without putting forth the effort to suck. I was thrilled when they told us he could just start off with the bottle (yes one day we want him to breast feed but for now they must measure it very closely).

It kinda felt wrong like we were teasing him because he wasn't able to start with much. His first feed was 4mL

Sunday 4mL

He gets to eat every 3 hours as he handles food well they increase the amount he can eat.Today, Tuesday morning he is up to 10 mL. He will need to be up to around 60mL (I think thats 1.5-2oz) before he can come home.  It is common for most Gastroschesis babies to do really well with their feeds at the begining but then it becomes too much for the stomach and we have to wait (days or weeks) to continue increasing the amount of food. (He gets breast milk in the bottle and they still deliver additional nutrients via Picc Line.)

Pooping

Unfortunately he is not pooping as much as we would like and as much as he was last week so we are hoping for more poops. (He is receiving glycerin suppositories every 12 hours for that).

His Cold

He has had a cold (RHINO VIRUS) since day 13 so he has been in isolation (away from other babies, and the nurses take extra measures to make sure they don't transfer the cold to other babies). Well yesterday evening they tested him again and it came back Negative! (Day 30) He is over his cold! Yippie Bridger.

New Bed (DAY 30)

He can maintain his own temprature so he has been moved out of an open warmer bed and now his has a crib like a real baby.

 Meds

They are continuing to ween him off his meds and he is handling the lower doses really well.

Oxygen

He spends a couple hours a day with no oxygen support but it is nice to have it close to give him a little extra support when he needs it.

No cords on his face

The Hole

The hole is his belly is healing up well. They have a vacuum and a sponge on his belly that will suck the skin closed and help it heal faster. He will probably need the "Wound Vac" for another month.

The hole- the yellow is a patch that was sown in during surgery.

This is an older picture- but it shows the wound vac.

Overall

This little guy is doing great. We think if he continues to progress we could have him home at the end of September.

We sure appreciate the grandparents watching our 2 yr old, Carter. The meals that have been brought over have been awesome and I've loved my Young women from church doing chores at my house. Thank you for the thouhgtful messages, and most importantly all the prayers that have been said for our family.

The only bad news to report is that my car decided it wanted some attention so it started smoking on the way home from the hospital last night and we had to take it in today. I hope it gets out of the car hospital soon. Luckly the car hospital is cheaper than the NICU 😉. This hasn't tripped us up too much, my parents have an extra car they are letting me use for now. My parents are always taking such good care of me.

Well thanks for caring

Love,

The Taylor's

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Bridger's Steps of Progression

✔Intestines put in Silo (day 1)

✔Closure Surgery (day 12)

✔Off the ventilators (day 21)

✔Held by mom and dad (day 21)

✔Weened off sedation (day 23)

✔Weening his pain meds

Off paid meds

✔Weening his oxygen support

Off oxygen support

✔Hear bowl sounds (tummy grumbles)

✔Poop

✔Introduce food(day 29$

*Tolerate food (digest food)

Increase foods to full feeds (60mL)

Remove Wound Vac

Nursing

Take our baby home

*We are praying that his digestive system will work properly and that he won't need any further surgeries.

Church in the hospital & Bridger Update

We have felt so many blessings lately. There is no question in our minds that there is a Heavenly Father who loves us, who watches out for us and who answers prayers. We know there are many of you praying and fasting for our family. We know this by the comfort we feel on a daily basis. Thank you for your prayers!!!  Yes there are frustrating moments but they are few compared to the moments of joy, bonding, and growth. We have been lifted and carried through this by the angels working for God.

 Today being Sunday we were able to attend our church at the hospital. It is awesome. Jordan decided this will be his "home ward." It lasts only 30 minutes! You can wear whatever you want! And the spiritual moments are strong.
Plus

-Today sweet 3 yr old was dancing next to the podium during the musical number.
- The life flight team quietly snuck out while they were passing the sacrament to go pick up another kid.
- You can wear your Pajamas.
-People of other faiths join to worship- the Mennonites have been there the last couple weeks.
-The sweet spirit of the kids who come in with IV poles, wheelchairs and all sorts of disabilities.
-Getting to partake of the sacrament and remember that Christ understands all of it.
-Musical numbers are the best.

Now for a Bridger Update
He is doing awesome!!!! We are thrilled about his progress even if it is in a diaper. Yippie for the many poopy diapers he has started having. His bowels are waking ups and making sounds. Today he cracked a smile when he tooted in his sleep. Jordan smile was even bigger.
This week  I got to hold him skin to skin. I was supposed to try Non-nutritious Breast Feeding (pump all the milk out but then let him try the act of nursing to help him learn to do it for later). I may have accidentally snuck him some milk and of course he loved it. His doctor no longer wants us to try Non-nutritious Breast Feeding. They are still waiting to really introduce any food to him but it should be soon!!! He needs very little oxygen support, in fact, he spent 6 hours the other day with absolutely no oxygen support. He is also doing very well as they wean him off his pain meds.

Bridger's Steps of Progression

✔Intestines put in Silo (day 1)

✔Closure Surgery (day 12)

✔Off the ventilators (day 21)

✔Held by mom and dad (day 21)

✔Weened off sedation (day 23)

✔Weening his pain meds
Off paid meds

✔Weening his oxygen support
Off oxygen support

✔Hear bowl sounds (tummy grumbles)

✔Poop

Introduce food

*Tolerate food (digest food)

Nursing

Take our baby home

*We are praying that his digestive system will work properly and that he won't need any further surgeries.

Day 21- Holding Our Baby

Getting to hold your own baby is a gift. A gift that I cherish, you don't realize what an incredible thing it is until you can't do it.

In order for us to hold our little guy he had to be off the ventilator (he was put on the ventilator during surgery, day 12; 12 Days Old Blog Entry).  The ventilator would breath for him and keep his lungs expanded against the extra pressure from the closure surgery.

He was on the ossiliating ventilator for a week, they have to keep him really sedated while on this ventilator so his body wont fight against it, there was some debate on whether he was ready for the next step, being put on a conventional ventilator. They went ahead and did it (he had some awesome nurses who were fighting for him). That was on thursday(day 19), almost one week after his closure surgery.

Two days later (Saturday) as we were driving to the hospital I was on the phone with my sister Heather (the one who wrote the BIRTH STORY, Birth Story Blog Entry - that made all of us cry and laugh). I told her we would probably have to wait another week till we could hold him (till he was off the ventilator). I was a little discouraged but willing to be patient.

The moment we walked in our nurse excitedly said, "TODAY IS THE DAY! We are getting him off this ventilator and you are going to hold your baby!!!". I was completely shocked.

As the motherly tears of excitement started welling up and pouring down my face, my first thought  was..... "Today is the first day for me to put on mascara, what a bad day for mascara."

3 hours later it happened, I was holding my precious baby

He was wide awake, happy, and alert. He looked straight into my eyes. We were having some serious bonding time. (for the past week he was so swollen he couldn't really open his eyes, plus all the drugs kept him pretty out of it). But as we held him he was so aware and so connected. He didn't close his eyes for the next 4 hours. Jordan and I spent the time with him in our arms just soaking it in.

He was still awake and still calm and content when we hesitantly left. He fell right to sleep 10 minutes later. 4 hours is a long time for a newborn to stay awake especially for a newborn on morphine and sedatives. But he knew this was important and he didn't want to miss it.

Holding Bridger was an anniversary gift. Sunday August 17th was our 7 yr anniversary. With all the commotion of life we hadn't really given much thought to our anniversary. But God made sure we got an anniversary gift.

 After leaving the hospital we got Carter (our 2 yr old) and went out on a date. We rode our bikes to the Hawaiian Ice Stand around the corner from our house. We were celebrating our awesome family and the great adventures we have had over the last 7 yrs. This little adventure we are having with Bridger is strengthening our marriage and our love for each other.

I am so grateful to have Jordan as mine. He is amazing and such a great support. As I watch him take on his role as father to both of these boys I fall deeper in love with him. I can't believe I am lucky enough to have someone as strong, devoted, loving, and fun. I have been blessed.

We are so excited for the progress Bridger is making. But, there are still quite a few steps before we get to take him home. And there is no time table, it is all dependant on him and he seems to take his time.

Bridger's Steps of Progression

✔Intestines put in Silo (day 1)

✔Closure Surgery (day 12)

✔Off the ventilators (day 21)

✔Held by mom and dad (day 21)

✔Weened off sedation (day 23)

Weening him down/off paid meds

Weening him down/off oxygen support

Hear bowl sounds (tummy grumbles)

Poop

Introduce food

*Tolerate food (digest food)

Nursing

Take our baby home

*We are praying that his digestive system will work properly and that he won't need any further surgeries.