Reflection

WOW. Is it really December 31, 2012?
I realize it has been 6 months since my last post and I feel like such a failure! I promised myself if I was going to write a blog that I was going to keep at it and not get this far behind! Oh man...what have I done?! LOL. I could try and get everyone up to speed with where Brody's at but 6 months is a lot to write about. So, I'd like to take this time and opportunity to reflect back on the past year. Makes sense, right?

January started the year started off with a bang as we learned about Brody. I am thankful that I was able to grieve before the birth of my sweet baby, even though it made for a difficult pregnancy. And although I couldn't fully know what was to come at least I was prepared so it didn't come as a shock when I was left all alone, with empty arms, in a hospital room that was once filled with doctors and nurses immediately after giving birth.

February was filled with non-stress tests, bio physical profiles and ultrasounds. I learned to trust as God does not make mistakes. God created this perfect baby for our family. I admit, I did cry a few times feeling like I was robbed of a perfect pregnancy and a perfect baby. I had no idea that I was just defining the word "perfect" incorrectly.

In March we welcomed sweet Brody. Adam and I grew a lot during this time. Basically, March, April, and May were all about finding the delicate balance it took to spend time with Brody, with Ryder, and with each other. I have never so desperately wanted to just have my family together for one day. One hour. One minute. Brody needed a lot of machines and medications just to keep him alive and if Adam and I weren't at the hospital we were calling and speaking to his doctors and nurses.

I learned how to change a diaper with all sorts of wires and tubes in the way. I learned how to take his vitals, place a feeding tube, and give a shot. I knew how to read his monitors and which wires were safe to unplug to pick him up. Day after day I left him in the care of the hospital only to go home empty handed. It wasn't easy trying to explain to a 2 year old about his little brother, whom he had never met but somehow I believe Ryder got it. He has a love for Brody that is beyond words. They have such a special bond and it's so amazing to witness.

Brody surprised everybody and came off dialysis after just 6 weeks! He eventually got weaned off the oxygen and has been breathing completely unassisted since the end of April. Both of which I am so beyond thankful for. Every day with out dialysis is a miracle and I continue to ask God to bless us and keep him off of dialysis until he can get a transplant. His doctor even talked to us several times about a trach and that he may never breath on his own. I love how my little boy has proven doctors wrong time and time again. :)

Our family was finally together for the first time at the end of May. I will never forget the look on Ryder's face when he came running down the sidewalk to see his little brother.

Brody was hospitalized in June and twice in July for infections. He got rid of his feeding tube mid-July and we had the Brody Johnson Benefit to raise money for his medical expenses. I cannot say thank you enough to everybody who had a hand in putting together that benefit. It was amazing. Thank you to those that came and supported us. Thank you to those that could not be there but prayed for us. Thank you. I had to take a lot of unpaid time from work and God has provided for our every need.

Brody had his 7th surgery in August and a nephrostomy bag was put in place. It is cumbersome to say the least but we are learning to live with it.

September and October were low key. Just a LOT of doctor appointments and blood testing. Through it all I still have the happiest baby in the whole world. The ultimate challenge of these two months were simply trying to get Brody to gain weight. We took a weekend trip to Nashville for a wedding and of course had to make a trip to the ER there too. But this time it was for Ryder. Not 30 minutes after arriving at the hotel he knocked out his front tooth! He might be the most accident prone child ever. The highlight of the year however (second to Brody being born, of course) is that Ryder is finally diaper free!  Hallelujah!! :) 

I started back to work mid-November which comes as a huge blessing. It means Brody is well enough that I can return to work. Brody also started physical therapy through Babies Can't Wait. He was evaluated and found to have "mild delays" and I can really tell the therapy is helping. I can't say enough good things about Babies Can't Wait.

Brody had his latest surgery at the beginning of December and has continued to pack on the pounds. He is in the less than 2 percentile for both height and weight but his doctor is happy with his own growth curve. He is currently around the 14 pound mark and can sit up on his own pretty well. He's finally starting to bear weight on his feet too. He has a contagious, heart-melting smile and loves the sound of his own voice. Oh, and Ryder chipped his other front tooth. ;)

Eight surgeries, 2 blood transfusions, hundreds of blood tests, ultrasounds, x-rays and doctor appointments, I'm happy 2012 is coming to a close. I'm looking forward to 2013, knowing it's going to be a crazy ride, because God is good all the time. He has gotten us through this year, making each one of us stronger, and I know he will take care of us through it all. Ryder and Brody are the best boys any mother could ask for. I thank God every day for both of them. I know they will both continue to surprise and amaze me.  Adam has stuck by my side, even during my darkest days, and I hope we can take more time for ourselves this coming year. A few more date nights maybe. I'm hoping Brody gets his transplant in early 2013 and I'm hoping Ryder doesn't hurt himself too bad!

I feel the need to write out my new years resolutions too. Maybe this will help me stick with them??  So here they are in no particular order:
1. Be kind, especially to my incorrigible, yet adorable, 3 year old.
2. Spend more time with Adam. (we will celebrate our 5 year anniv. in June)
3. Use my CFA coupons (haha)
4. Drink more water, take the stairs, and eat breakfast.
5. Run ...{shutter}
...I'm sure I'll come up with more, as I always do.

So here's to a wonderful 2013!

...Peace out '12. 

The Road Home

Ever had writer's block even when you've known exactly what you want to write about? Or feel like you're so behind it would just take forever to catch up so you just keep procrastinating over and over? Yeah, that's me. There are so many things I want to say but I just don't know how to write it all without sounding like a manic depressive chick with ADD. ...But I'll try...I only have a whole month of updates to write about.

The word "exhausted" doesn't quite seem adequate to describe how I've felt for the past month. The NICU grind seems easy compared to our new normal at home. I just want to sleep. (HA! I'm realizing sleep is a thing of the past.) So that's another reason why I haven't updated this blog in forever. I'm just too busy and too dang tired! We have a dr. appointment almost ever day and sometimes even multiple appointments in one day. Brody has several meds that are to be taken throughout the day and then there's the whole feeding regimen. Pump, fortify, decant, add meds, feed. All day long. :) But anyways, here it goes...

The road to home was drawn out and postponed several times. On May 1st we got our first approximate discharge date of May 7th. Then on May 4th we found out about the Pyloric Stenosis...surgery was postponed twice which then put our discharge date out to May 21st. And then the day before discharge he got his first infection. That pushed the date even further back until May 27th. Then, on May 26th, as Adam, Ryder and I were enjoying the morning playing outside, Dr. Elmore called and said Brody's pyelostomy was getting too tight and he needed to revise it. He gave me the choice: either do surgery now and stay in the NICU a few more days or go ahead and go home on the 27th and then come back in a week for surgery. I didn't think twice...so I hung up, we jumped in the car, and Brody had surgery that afternoon. We expected to stay 3 or 4 more days but on the morning of the 27th, Adam called and spoke to his nurse. When he hung up he said the sweetest words, and I will never forget the way he sounded when he said, "Brody's coming home!" ...Fear and excitement and nervousness and relief and every emotion imaginable flooded my body. THANK YOU GOD! After exactly 11 weeks, we finally had our entire family home under one roof.

During that last month in the NICU every time someone asked me "Do you know when Brody's coming home?" I just had to say "Not yet"...I didn't even want to mention that it was possible he'd be coming home on a certain day or that we were even discussing it. So I apologize to everyone for not sharing that info before now.

But anyways, we're home. Well, kinda. Ok, not really. He was in the NICU for 11 weeks, home for almost 3 weeks and now Brody's back in the hospital and had his 6th surgery today. So here's how that happened...On Tuesday, June 12th, Brody had an appointment with his urologist, Dr. Elmore. He noticed that the stoma of his pyelostomy was getting tight again so he put in a catheter and scheduled surgery for the following Wednesday, June 20th. He told me that the catheter would probably come out in a few days so if it does, just make sure the pyelostomy is still draining. The catheter came out just after 2 days. That Friday night Brody hardly slept and was very irritable. He also had a low grade fever and by Saturday had lost his appetite (what little he had). We drove down to the lake Saturday morning, which I was REALLY REALLY excited about...finally, a family day...a day we could all be together with NO DOCTOR APPOINTMENTS! ...and maybe I could get rid of this vampire glow. Anyways, we got to the lake, I changed his diaper and it was completely dry. So we turned around and off to the ER we went. We spent about 8.5 hrs in the ER...a urologist put another catheter in his pyelostomy to drain the urine (It took several attempts to get a catheter in) and they did a renal ultrasound to look at the kidneys. (Gah, I hate freakin ultrasounds. Too many bad memories.) His CRP was 15 (suppose to be less than one) which indicated an infection. He had a spinal tap done to rule out meningitis. And he had a EKG done because his potassium was 7.2 ("dangerously high" which can effect his heart). He was admitted into the PICU around midnight and started a round of antibiotics. We were told his surgery would most likely be postponed because the anesthesiologist wouldn't mess with him if he has an infection. Monday night he was transferred from the PICU to the general floor. And surprisingly, everyone agreed to go forward with surgery on wednesday. So here we are. Post surgery. Dr. Elmore opened up his pyelostomy, looked at his bladder and kidney with a scope, and guess what...turns out he DOES have a ureter!! It's just not hooked up right and part of it is not an open tube but more of a cord. So now the question is when and how do we reconstruct the urinary tract. Before transplant? After transplant? ...Brody's team of doctors are going to all meet up and discuss future plans this Friday. I'm anxiously awaiting to hear what they come up with.
...It's now Thursday June 21st...and today's big event is a blood transfusion (he's severally anemic and they just keep drawing and testing his blood...a lot). He's getting his last dose of IV antibiotics before being switched to oral antibiotics so hopefully, HOPEFULLY Brody can come back home tomorrow (or at the latest, Saturday).

Awaiting Surgery #4

Brody is becoming quite the snuggle bunny. Both Saturday and Sunday when we walked into the NICU, Brody was hanging out at the nurses' station getting loved on by some awesome nurses. I can't even begin to describe the feeling I had when I saw that. The best word that my delirious brain can come up with is "joy".  It was just a few weeks ago that he was on a ventilator and receiving dialysis for several hours a day with multiple tubes hanging off his little body...and wasn't able to be held. Maybe he's making up for lost time ;)  He loves being held and looking around the room.  I went and bought a Moby wrap so when when he comes home I can hold him all the time! lol. Seriously though, I am very excited about the Moby. I wanted one with Ryder but just never got one. Brody has also really started to take his pacifier pretty well and it is so cute to watch him drift off to sleep with it.

5-6-12 cuddles with Mommy

Brody still hasn't taken his milk from a bottle except for just a few times and it was only a few milliliters each time. On Thursday he had an upper GI test just kind of routinely to see if anything was going on. I didn't get to go with Brody to get the test done because I was learning how to use the home apnea monitor and feeding pump that was delivered to the hospital for us to take home but I'm kind of glad I didn't get to see it. The nurse said Brody did very well with it but when Ryder was about a year old he had an upper GI done and it was traumatizing to say the least. Ryder wouldn't drink the barium from a sippy cup so they literally squirted it down his throat with a bulb syringe and then he vomited for several hours afterwards and was very lethargic. Not pretty. Anyways, Brody's upper GI showed that he might have Pyloric Stenosis and then Friday they did an ultrasound that confirm it. Pyloric Stenosis is where the Pylorus (muscle in the stomach) is too large and doesn't allow food in the stomach to pass into the intestines. This explains why he's had such mucussy spit ups even though he's doesn't have food in his stomach, and when he does, he vomits. The nurse practitioner said she was going to contact the surgeon and schedule surgery. Later that day, someone from surgery (a resident, I think) came to talk to me and said they were going to hold off on surgery because it could just be irritation from the TP tube in which case it would resolve on it's own. This kind of frustrated me. No, I don't WANT Brody to have to have surgery again but to me it sounded like the right thing and this way we'd go ahead and fix the problem and maybe we could really get him on a bottle. The doctors and nurses talked and decided to wait a few days and do another ultrasound to see if it's getting better or worse. The follow up ultrasound from this morning (5/8) showed the pylorus was significantly larger than on Thursday and confirmed that it's definitely pyloric stenosis. Surgery is scheduled for tomorrow (5/9)afternoon. The surgeon will go in and cut the muscle fibers allowing it to open up. The surgeon is going to try to keep the TP tube in place but if it comes out Brody will have to go about a week without feeds (just IV nutrition) to let it heal. I'm praying that doesn't happen. We just started to get on a nice upward trend with his weight and I would hate to see those numbers slide backwards.

5-8-12

The nephrologist has been so pleased with his lab work and thinks that he will actually be able to go several more weeks without dialysis, so she decided we need to take out the dialysis catheter! They will remove it while he is in surgery tomorrow. Dr. Jernigan said it is too risky to keep the catheter in and not use it. This is amazing and scary all at the same time. I'm truly amazed that he has gone 2 whole weeks without needing dialysis and probably going to go several more weeks without it. I'm scared that I'm going to wake up one day and BAM! back to 16 hours of dialysis with a puffy little baby that's having difficulty breathing.  I'm scared they're going to take out the catheter and just a few days later decide to put it back in. I'm trying not to think about any of that though... Just thankful his kidney is working as well as it is...Brody truly is a little miracle.

...There is so much more I want to write about...I've been sitting here staring at my computer for over an hour trying to figure out what else to write. But I'm tired. I almost fell asleep driving in bumper-to-bumper traffic on I-285 during a thunderstorm today. (shh...don't tell my mom!) So I think I'll save those thoughts for another post and go to bed now.  But first, here's the weekly run down:


Monday (4/30):
-Weight: 2.95kg
-No PD. BUN still ok and Creatinine starting to stabilize...it is the same as yesterday.
-Potassium is high. Dr. Warshaw ordered K to be checked venously and not by heel pricks anymore (for more accuracy). Kayexalate ordered to lower potassium. At 4pm they rechecked K and it was fine. No need for Kayexalate yet.
-MCT oil increased to 3ml.
-Took 12ml of milk by bottle and then spit up almost immediately afterwards.

Tuesday (5/1):
-Weight: 2.97kg
-Labs good. BUN & Creatinine up slightly.
-Withholding Beneprotein b/c it has K in it.
-Took 6ml of milk from bottle.
-Spoke to discharging caseworker about starting to get things together to go home!

Wednesday (5/2):
-Weight: 3.005kg.
-Sodium low, Potassium high. EBM & formula to be decanted with Kayexalate. Creatinine the same, BUN good.
-GI doctor came on board to try to figure out what's going on with feeding.
-CVL Picc line removed (permanent cuff under skin).
-Blood is acidic. Given Bicitra as a buffer.

Thursday (5/3):
-Weight: 3.06kg
-Ordered hearing screen.
-Upper GI test at 1:30pm
-Potassium good (went from 6.1 to 4.8) after decanting milk.
-Creatinine the same, BUN up slightly. Still anemic. Dr. Warshaw increased EPO dose.
-Learned how to use home apnea monitor and food pump.

Friday (5/4):
-Weight: 3.05kg
-Upper GI test showed Brody might have Pyloric Stenosis. Confirmed by Ultrasound. Spoke to surgeon, will not do surgery right now. Re-check on Tuesday.
-Gave Brody a bath for the first time (our first time, not his).
-Learned how to place a NG tube
-Watched PURPLE Crying video

Saturday (5/5):
-Weight: 3.13kg
-Phosphorus is high. Adding Calcium Carbonate to milk to bind to phosphorus and keep him from absorbing it.
-Potassium normal at 4.3 (still decanting milk)
-Learned how to fortify and decant milk.

Sunday (5/6):
-8 weeks old today!
-Weight: 3.21kg (7 lbs, 2 oz)
-No labs today (to be ordered every other day from now on instead of every day)

Monday (5/7):
-Weight: 3.27kg
-Potassium normal. Phosphorus normal. Sodium low.
-Creatinine same as Saturday and BUN down a little (great news!)
-I gave Brody his EPO shot, canola oil (switched to this from MCT oil), and clipped his nails for the first time.
-Dr. Jernigan is really impressed with his labs and wants to take out PD catheter.
-Klonopin weaned to just once/day.
-Fussy at night.

Tuesday (5/8):
-Weight: 3.3kg
-No labs today
-Ultrasound showed Pylorus is significantly larger than last Thursday Scheduled surgery for tomorrow. Surgeon will also remove PD catheter.
-Off feeds and back on IV nutrition.
-Increased Klonopin back to twice/day but very small dose.
-Medications for home were delivered to NICU and checked by pharmacy.
-Spoke to nutritionist about going home.

An amazing week!

Wow, a lot has happened in the past week!...Brody is 7 weeks old today and is now completely breathing on his own!! Hallelujah! They removed the oxygen cannula this morning and he is doing great. We were able to kiss his sweet cheek today for the very first time and I took tons of pictures as this is the most skin and least amount of tape I've ever seen on his face! ...Now if we could just get rid of that feeding tube! Today also marks day 6 without dialysis!! I would have posted about this on day 1 but I didn't want to jump the gun and get too excited before I knew how his body was going to react without the dialysis.

4-29-12

Last Tuesday, Dr. Warshaw decided that Brody's lab work looked so wonderful that he could probably take a break from the dialysis for a while. The pyelostomy was putting out a good bit of fluid and Dr. Warshaw was interested to see how fast his BUN and Creatinine levels would increase. Brody's kidney is extremely abnormal so he will have to go back on dialysis eventually but, best case scenario, Brody could go a couple months with out dialysis. ...Most likely just a few days to weeks. Since they stopped the dialysis, his BUN has increased about one point every day and his Creatinine has increased about a tenth of a point everyday. They are currently still within normal range but there is a definite upward trend. And the fact that he's not retaining fluid is wonderful. Dr. Warshaw explained that everyone's kidneys mature a little bit in the early months of life and now that Brody's kidney is constantly draining and not retaining urine it is less stressed and therefore doing better than it was. He made sure to tell us that it will never function normally. ...Like I haven't heard that a thousand times.

The physical therapist came by on Tuesday but the session seemed to stress Brody out so she kept it short and sweet.  The PT explained to me that signs of stress for an infant can be hiccups, multiple sneezes, stretching out the arms or covering the face (Brody started hiccuping and spitting up when she was stretching his legs). She showed me things I could do with Brody to help him grow: tickle his feet one foot at a time (this will help him kick) and stroke the back of his neck while in the prone position (this will facilitate head control). She also helped me fill out a developmental plan:

At this point, our real concern is just trying to get Brody to gain weight. In order to go home he has to be big enough to be on the dialysis machine and to do that he has to be able to handle a fill volume of 100cc's. He has only gained 9 ounces since birth. At his current weight, the most he has been able to handle is 60cc's (he started at 40cc's). He's now getting 18ml/hr of fortified breast milk through his feeding tube. He is not too interested in a bottle. The first day he took a bottle, he did so well that the therapist put in orders to work with him only 3 days a week. Well, he's either been too sleepy (because of the meds), or just not interested at all so the therapist is now suppose to work with him 7 days a week. I say "suppose to" because I don't think she's come by everyday.  I spoke to the Physician's Assistant about possibly weaning him off some of the meds so he's not too sleepy to eat so she cut the Klonopin dose in half although he's still really sleepy even with just 1/2 a dose. He really really needs to start gaining some weight...If only we could give him a cheeseburger! :)

Good bye incubator! Moved to a big boy bed on 4-25-12

He did have kind of a rough day on Thursday. Brody has reflux and has been spitting up (just mucus since he has a TP tube and milk is going directly into his intestines) and on Thursday his TP tube migrated out of his intestines and into his stomach.  I was holding him and the nurse had just given him a dose of Sodium Chloride when he started to gag. I sat him up a little and he started vomiting. A lot. Thankfully the nurse was right there because this time it wasn't just mucus. Because he was now throwing up milk, we knew the TP tube was out of place. The nurse pulled the old tube out and put a new tube in...it took 3 tries before she got the new TP tube in the right spot (X-ray verified that it was where it was suppose to be). I was pretty impressed that even though he was SCREAMING his O2 saturation never got too low. ...By Friday morning the TP tube was out of place again. They stopped his feeds (which he really can't afford to go any significant amount of time without his feeds) and took him down to fluoroscopy to make sure it was in far enough. They also used a weighted tube to make sure it stays in place. He's still spitting up every now and then but instead of Xantac they are now giving him Prevacid.  I think his reflux might be a side effect of the Klonopin they are giving him for stress. This all started the same day they started the Klonopin.  I asked the nurse about it and she said it is possible but apparently he "really needs the Klonopin".  I'm hoping and praying they take him off this medicine soon.

Waiting on a new TP tube. Don't laugh at my double diaper! :)

Even though the doctors cannot give us any indication as to when Brody will be able to come home, Adam and I went ahead and took the CPR class and car seat class which are required for discharge. The car seat class was actually very informative. Apparently 98% of people do not have their car seat installed correctly. We had to bring our car seat in and install it in front of the instructor which she said we did just right. She showed us pictures of how some people install their car seats and I was flabbergasted at the ridiculousness that I saw. Someone actually used an infant swing as a car seat and thought it was acceptable. I would have laughed but it was just too sad to think that a parent thought that was safe. Before Brody can go home he will have to pass a car seat test too. He'll have to be strapped into the car seat and monitored for an hour and a half to make sure his heart rate and breathing are ok. There are still a dozen things we have to learn and do before we can take Brody home (as well as, of course, Brody being physically able to go home) but we got a few things checked off the list.

4-28-12   Loves his frog

Saturday (4/21):
-Weight: 3.08kg
-Labs good and PD the same (6 passes of 60cc's)
-Morphine discontinued and now on scheduled doses of Klonopin (3x/day) for anxiety (still on Ativan as needed)
-On clear IV fluids only, just to keep central line open.
-O2 still on 2 liters
-Adam gave him one 14ml bottle of EBM fortified with PM 60/40

Sunday (4/22):
-6 weeks old today
-Weight: 3.085
-Labs good and PD the same
-Didn't seem interested in the bottle. Tried paci dipped in milk to get used to taste.
-Dr. Batisky impressed with pyelostomy output.

Monday (4/23):
-Weight: 3.05kg
-Starting on Calcium supplement
-PD the same
-O2 weaned to 1.5 liters
-Feeds increased to 18ml/hr and adding beneprotein to EBM. (PM 60/40 with every feeding; PM 60/40 and beneprotein 2x/day)
-Electrolytes are slightly off so adjusting fluids
-No bottle today. Speech therapist came over to work with him but he was too fussy.

Tuesday (4/24):
-Weight: 3.12kg (6 lbs, 14 oz).
-Klonopin seems to be working-didn't need much Ativan.
-Started spitting up. Prevacid ordered
-Labs look good. No PD.
-Short PT session and developmental plan in place.
-Weaned to 1 liter.
-Wouldn't take bottle...Too sleepy to eat.

Wednesday (4/25):
-Weight 2.97kg
-Bumped back up to 2 liters (trouble breathing because of reflux) but then by mid-day down to 1.5 liters.
-Moved to a big boy bed and spent some time in the MamaRoo and liked it.
-Labs good and no PD. Creatinine up slightly but still within range. Hematocrit low (he's looking rather pale) but no need for a transfusion yet.
-Too sleepy to eat again. Klonopin dose to be cut in half. (took a little milk out of a bottle for the night nurse).

Thursday (4/26):
-Weight: 3.00kg
-Labs good, no PD
-Weaned to 1 liter cannula
-Given Sodium Chloride, threw it up, then given another dose.
-TP tube came out of place. Replaced TP tube.

Friday (4/27):
-Weight: 2.89kg
-At 2am still throwing up and extremely fussy. Abdominal Xray showed a lot of air in his belly. Replaced TP tube at 10am using fluoroscopy.
-Urology looked at Pyelostomy site. Its a little hard but they were able to flush it so it's not closed. Did ultrasound at 11am and everything looks fine.
-Resting comfortably when Adam and I were there.
-labs good, no PD.

Saturday (4/28):
-Weight: 2.88kg
-labs good (BUN & Creatinine are creeping up a little but still within range.) No PD again.
-Stopped Klonopin at night but was really fussy.
-Not interested in bottle whatsoever.

Sunday (4/29):
-7 weeks old today
-Weight: 2.92kg (6 lbs 7 oz)
-OFF OXYGEN!!
-Labs good (BUN & Creatinine still going up slowly). No PD.
-Back on Klonopin.
-Surgeon paged to come remove the PICC line but will do that tomorrow.
-Dr. Warshaw wants to increase his caloric intake so they are going to add more protein to the milk (this is along with the PM 60/40, Beneprotein, and MCT oil).

First taste of Milk

"Hey, guess what everybody?!? I don't have anymore tubes in my mouth!!"

Yep, last Thursday Brody self-extubated and was put on the high flow cannula (7 liters). He has since been weaned down to the low flow (2 liters) and today they took his repogle tube out (tube that vents air out of his stomach). This is a huge step because he can now take a bottle! Brody had his first bottle this morning (4/20) at about 10:45am. The Speech Therapist came over to evaluate him...she checked out his mouth and tongue. Then she put a drop of breast milk on the tip of a pacifier and handed it to me to give to Brody to see if he could suck and let him taste the milk. He went to town. So then we tried a bottle (he still can't actually nurse because he still has the cannula in his nose and it would just be too uncomfortable). He drank 14ml like a champ and then went into a milk coma for about 5 mins. The Speech Therapist called Brody a rock star and said he made her job way too easy today. ...He sure did make me happy. She put in an order to give him two 16ml bottles/day and continue on the trans pyloric tube feeds as well (16ml/hr). Tonight, Adam tried to give him his second bottle but he was slap wore out. He might have drank a couple ml's but a lot dribble down his chin. He was just too tired. They are still fortifying the milk for 26 cal/oz and when cleared by the MD we can try breast feeding. Until then, they want us to practice kangaroo care. I'm excited and nervous and several other emotions that I can't even explain.

Brody's lab work has looked great all week. His PD solution has been changed as to not draw off so much fluid because a lot has been coming out of the pyelostomy site (which is great), the number of passes has been decreased (which I know is more comfortable for Brody), and the fill volume has increased by 10cc's (which is a step closer to going home!).

Today his nurse made the comment that he has really turned a corner and has just drastically improved in the last few days. It's so amazing to watch as he's starting to do things that I remember Ryder doing as a newborn. I think it helps that he's not being pumped full of sedatives too. Yesterday was his due date and all this just goes to show how important every single day in the womb actually is. He has lost a lot of the fluid that he retained last week and looks just beautiful. And now that there is a little less tape on his face I am starting to notice a little resemblance to his big brother. Brody amazes me more and more every day and I am so thankful for each and every prayer sent up for him (and us as well), he is a true testimony to God and I know I've said it before but I CANNOT WAIT to show him off to the world!

Here is what the past week has looked like for us:

Saturday (4/14):
-weight: 3.01kg
-5 liter cannula but bumped up to 7 after getting upset
-lab work good but sodium a little high
-content resting on belly and sucked on pacifier a little bit. Adam and I both held him.
-Morphine and Ativan given as needed
-12 passes of PD

Sunday (4/15):
-weight: 3.08kg
-lab work looks excellent and nephrologist is very impressed. He decreased PD to 10 passes
-Brody is still showing the nurses who's boss and pulled repogle tube out twice.

Monday (4/16):
-weight: 3.06kg
-weaned down to 6 liters cannula
-up to 24 cal/oz EBM
-10 passes of PD
-respiratory rate, oxygen saturation, heart rate, blood pressure, and lab work all look great

Tuesday (4/17):
-weight: 3.04kg (weight loss could just be fluid shift)
-increased EBM fortifier to 26 cal/oz
-O2 decreased to 5 liters
-standard thyroid tests normal
-chest X-ray looks good and lungs sound clear
-PD decreased to 8 passes and fill volume increased to 60cc's
-during night shift, nurse notices Brody had pulled the oxygen cannula out of his nose. His O2 saturation never dipped ;)

Wednesday (4/18):
-weight 3.04kg
-oxygen cannula decreased to 4 liters and by night shift was weaned even more to 3 liters
-PD decreased to 6 passes

Thursday (4/19)...due date:
-weight 2.93kg (6 lbs 7 oz)
-doing really well on 3 liters
-feeds are the same
-Albumin is perfect and all other lab work looks great. Potassium has been taken out of IV fluids.
-PD solution changed from 2.5 to 1.25 (still at 6 passes of 60cc's)
-night nurse said there's a possible occlusion in picc line

Friday (4/20):
-weight: 2.95kg
-PD the same and all labs good
-nurse had no problem with picc line (could have been a problem with postioning)
-weaned down to the 2 liter cannula and breathing beautifully
-repogle removed and began bottle feeding
-wearing a tee shirt for the first time :)

Self Extubation

Well, it hasn't been that long since my last post but I feel like I have SO much to write about!

The Tuesday after Brody's surgery (4/10), was pretty much a rest and recover day.  His sodium was normalizing and they began feeding him again at 4ml/hr and increased after 6 hours.  He's getting more protein and no dialysis was ordered for the day so his surgery site could heal. ...His weight was deferred.

puffy little face

Brody has a rather large team taking care of him. Among the many, many nurses there are respiratory therapists, neonatologists, nephrologists, urologists, child life specialists, occupational therapists, physical therapists, and even speech therapists that are all members of his developmental team.  I'd even say the social worker and lactation consultant are members too because whenever they come talk to me to see how I am, they usually end up talking about how "we" are doing.  On Tuesday, the OT and PT were just finishing up a session when I walked in. Brody was tolerating it very well...I'm sure it felt good to be stretched and gently massaged after all he's been through. They helped me understand how Brody is adapting to his environment and how I can help him through positive touch. They explained that I am the one constant person in his care and he is learning that through my voice, scent, and touch. They showed me how containment (swaddling, and gentle pressure at his head and feet) helps him feel secure and safe and once I'm able to hold him we can practice kangaroo care (skin to skin contact). I also learned that a speech therapist will help Brody once he gets all these tubes out of his mouth...he will most likely have a bad gag reflex and won't have too much of a sucking instinct. I'm interested to see how they work with him on this.

Wednesday (4/11) marked 1 month since birth. He was pretty puffy and his weight had gotten up to 3.47kg (that's 7.65 lbs...nearly 2 pounds gained in 1 week) ...a LOT of water weight.  His feeds were back up to the maximum 16ml/hr and the nephrologist ordered 8 passes of dialysis with hopes of taking off a lot of fluid but without overdoing it so soon after surgery.

Thursday (4/12), Uncle Jason came by for a visit and the nurse noticed Brody had a splotchy rash mainly on his left side. The nurse practitioner said it's most likely Erythema Toxicum Neonatorum...a common, unexplainable newborn rash that shouldn't cause much concern and will most likely go away in 5-7 days. She said they would watch it closely because if it got worse, if he developed sores, or got a fever then it could indicate an infection or virus. ...thanks to the dialysis his weight was down a little (3.26kg) and a fortifier (Similac PM 60/40) is now being added to his breastmilk for an additional 22 cal/ounce. The nurse also spoke to me about possibly taking Brody off the ventilator in the next few days. He would need to be at the lowest possible settings for several days before they could extubate him.  Shortly before I left, I noticed that the adhesive tab that was holding the NeoBar in place had come unstuck (the NeoBar fixates the breathing tube).  I tried pressing on it but it wouldn't re-stick so I told one of the nursing students and she casually walked over and told Brody's nurse. Brody's nurse casually walked over and told the respiratory therapist. The respiratory therapist then RUSHED over, asked me to hold the bar in place, thanked me for noticing and said "Thank God you were here!". Then asked me to assist him while he put a new NeoBar in place.

Later that night, Adam called to check up on Brody like he does every night. We were both shocked when his nurse told us he had extubated himself. WHAT?!? Apparently the new NeoBar came loose (he was probably pulling on it) and the tube slipped out just enough that they didn't feel comfortable blindly shoving it back down his throat so they just took it out. ...well, that's one way to show them who's boss! I think Brody was just fed up and didn't want to deal with another several days of that tube. The nurse did say that it looked like he was working a little hard to breathe. I just hope and pray that they do not have to reintubate him.

A chest x-ray was ordered for Friday morning (4/13) and showed that his left lung was a little hazy but his blood gas was excellent. They now have Brody on the high flow cannula (at 7 liters and weaned down to 5 liters by the time we talked to the night nurse). His respiratory rate was a little high but that is to be expected since he wasn't really weaned from the vent. He will be watched closely and the nurse said the next 48 hours will really indicate whether or not they can leave him off the ventilator. Hopefully he improves drastically within the next day or two. ...Another upside to being off the vent? I got to hold Brody and hear his sweet cry! He was awake and alert nearly the entire time I was there today. And for good reason...they cannot give him heavy sedation meds since he does not have the assistance of the ventilator. Because he was on highly addictive narcotics for the past 4 1/2 weeks he is now going to get methadone to prevent withdrawals. His rash is gone and since it only lasted a day it was most likely an irritation to something that he came in contact with. They're still giving him sodium citrate and sodium chloride along with the MCT oil and fortifier in his milk... his weight was down to 3.02kg (6.6 lbs). And hopefully they'll get off more fluid with the 12 passes of PD that they will do through the night.

I came across this Bible verse while reading about another NICU family: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." -Philippians 4:6. We are so thankful for both our boys and for all the progress Brody is making. It's hard not to be anxious about the days ahead for every day brings changes and new challenges and so I ask you to please continue to pray for Brody-that his lungs get stronger and stronger every day...that he remains free of infection...that he can come home soon so we can be the family of 4 that we're suppose to be.

Surgery numero 3

I started this post 6 days ago. And I have yet to finish it. It's been typed, deleted, and retyped I don't know how many times. Sometimes I start to write and then get distracted. Sometimes I get half way through and then get interrupted. Sometimes I write something and then delete it because I think I don't even want to read it. And now, with 6 days of updates to write about, I find that I don't even know where to start.

Right now Adam and I are sitting in the surgical waiting room. Brody is having surgery number 3 as we speak. He's not quite a month old yet.

To explain the surgery as simply as possible, the urologist is removing the nephrostomy tube (the tube that is draining his left kidney into a bag outside his body) and creating a cutaneous pyelostomy...where they attach the renal pelvis right to the skin...meaning there won't be a tube outside his body.  The fluid from his kidney will then drain into his diaper. I hope.  Dr. Elmore said he is going to try to make the site low enough to where it drains into his diaper but far enough to the side that it doesn't interfere with his dialysis.  One of Adam and my biggest concerns was how permanent this is going to be...I don't want my son to have to pee out of his side for the rest of his life. The doctor explained that this is just temporary until he gets a little bigger and/or gets a transplant and then they can reconstruct his bladder (right now his bladder is extremely small since it never got used inutero). Apparently the bladder can be reconstructed using part of his intestines.

The other night, I was bored and unable to sleep, I hopped onto the CHOA website. After clicking on several different links I found a video about kidney transplants.  There was this husband and wife talking about their youngest son.  The similarities between their situation and ours is uncanny. The woman had an ultrasound at 18 weeks and was told something was wrong with her baby's kidney. She went back for a check-up ultrasound a few weeks later and was told something was wrong with both of her baby's kidneys. She was put on bed rest at Northside Hospital because she had no amniotic fluid and her son was born at 34 weeks. He weighed 5 lbs 14 oz., transferred to CHOA and was put on dialysis within the first week. As Adam and I watched this video we looked at each other and I said, "are they talking about us?!" ...they had another son who was a couple years older than this baby and their house even resembled ours. It was weird.  But when they got to the part of their story where they talked about their son's kidney transplant, I couldn't hold back the tears. It showed the little boy, post-transplant, running around with his older brother playing in the yard and I ached for that dream. Their son stayed in the NICU for only 2 months. He received a kidney from his uncle. He's thriving.  I know our story will continue to follow theirs and Brody will be chasing Ryder around our yard within the next couple years. I know there are still life long medications and possibly even complications after transplant, but I cannot wait to be tested to see if I would be a good candidate for donation. I never dreamed I would want to have surgery and give up an organ THIS badly.  I will do anything, literally, to just take this all away from Brody. My heart hurts.

I am extremely thankful that he is as strong as he is though. Having to deal with 3 tubes down your throat and multiple tubes in the abdomen, chest & arms pulling fluid out and pumping fluid in can't be fun. Last Tuesday (4/3) we got here around 7:30pm and were unable to go see Brody because one of the babies in the NICU had past away and the family was in there with the baby. This was right after I learned about another little angel that passed away just hours before. I'm sure a lot of you know who I'm talking about. That was a hard night. When we finally got in to see Brody I couldn't help but cry. I was crying for the Needham family. I was crying for the family that just lost their newborn baby. And I was crying because I am blessed with my two boys. Seeing all these babies in the NICU and other children around the hospital really makes you stop and think and be thankful for your own health and the health of your loved ones. I now know just what a miracle each and every one of us actually are. Ryder amazes me. Brody blows my mind. Even with all his complications.

Brody is out of surgery now.  We spoke with Dr. Elmore and sat with Brody for a little bit in the NICU, waited for him to start dialysis, and now we are headed home. Dr. Elmore said he was happy with how the surgery went but said he was able to look inside Brody's kidney and it is very abnormal. Although it is making urine, it is not filtering the blood very well. But we pretty much already knew that.  ...at this very moment, we just pulled out of the parking deck and passed an ambulance, and a medic helicopter is landing on top of CHOA.  Between CHOA, Northside Hospital, and St. Joseph's Hospital all right here next to each other, I don't enjoy driving around here. I pray for those being rushed to the hospital.

There has been a song stuck in my head for the past several days now. Kind of fitting since we are in the Easter season but we sang it in Church when I was pregnant, not long after I learned about Brody's renal defects.  I get that lump in your throat feeling every time I hear this verse: "How sweet to hold a new born baby, and feel the pride and joy he brings. But greater still the calm assurance, this child can face uncertain days because He lives. Because He lives, I can face tomorrow. Because He lives all fear is gone. Because I know He holds the future, and life is worth the living just because He lives."

...and here's a play by play:

Tuesday (4/3):
-Weight: 2.65kg
-Off Lipids and Hyperal (just clear fluids to keep line open)
-Blood gas good
-Continue same PD
-Feeds up to 14ml/hr

 Wednesday (4/4):
-Mag3 Study (renal scan w/radioactive tracer) showed no function of right kidney and decreased (limited) function of left kidney.
-Renal/Bladder ultrasound showed multiple cysts on both kidneys, no ureter on left side and extremely small bladder.
-Chest x-ray good and vent settings lowered.
-Same PD regimen
-Weight: 2.68kg
-Feeds at max 16ml/hr.
-Sodium low but potassium increased to normal (3)
-BUN and Creatinine way down (good!)
-Spit up for the first time (not good since he's on the vent he could aspirate.)
-Given Morphine and Versed

Thursday (4/5):
-Weight: 2.72kg
-Same PD regimen
-Blood work looks great
-Blood pressure up so given small dose of blood pressure meds
-Still spitting up. Could be back flow of gastric fluids from TP tube. Nurse practitioner slightly concerned but just wants to watch it for now. Could be "floppy sphincter".

Friday (4/6):
-Weight: 2.86kg
-Blood work looks great
-Same PD regimen
-Nephrostogram at 1pm. Radiologist seems to think nephrostomy tube is in the cyst (although surgery on 4/9 revealed nephrostomy tube is actually in the kidney where it is suppose to be)

Saturday (4/7):
-Weight: 2.94kg
-Adding 1cc of MCT Oil (Medium-Chain Triglycerides) 2x/day to breast milk to help him gain weight. This will add a whopping 13 calories to his diet.
-Looks a little puffy today due to fluid retention but labs still look good.
-Brody met Uncle Nick & Aunt Sarah
-Same PD, on room air, vent settings lowered

Sunday (4/8):
-Weight: 3.06kg (looking very puffy again)
-Vent lowered from 22bpm to 20bpm
-Stopping feeds at midnight and moving to IV antibiotics
-Receiving .5ml/hr of Albumin
-PD changed from 2.5 to 4.25 to help draw off more fluid
-Very agitated and warm today. Nurse doesn't think Morphine/Versed combo is strong enough for him. Suggested going back to Ativan and possibly Fentanyl. Blood pressure dropped when she gave him Versed. So they did switch back to Ativan.

Monday (4/9):
-Weight: 3.05kg
-Labs good. Sodium normalized & he's set for surgery.
-Anemic so blood was ordered just in case they needed it in surgery (they did not need it).
-Went in for surgery at 4:20pm and out by 5:20pm
-Sodium post surgery was 116 (normal is between 130 & 150). Given a bolus of sodium and then put on sodium drip.
-Nephrology ordered 4 passes of PD but because they got off so much fluid (negative 245cc's) they only did 2 passes.

If only kisses could heal

I'm sitting here, staring at my keyboard, with so many thoughts going through my head about this past week-it seems almost impossible to put it all into words. Right now I'm feeling guilty. Guilty because I'm sitting at home while Brody is in the NICU waiting to be transported down the hall for a renal scan. I should be there with him. But I'm not. I convinced myself to stay home because there's nothing I could do there but sit in the waiting room all day long. But I still can't help the tears of guilt from streaming down my face.

Last Monday I felt defeated since Brody had to be reintubated.  That was followed by a very scary and frustrating Tuesday.  When I arrived in the NICU the nurse was still waiting on the tubing to come in so they could start the dialysis. Three hours after Brody was to begin his PD treatment, and after a lot of frustration trying to find another solution to get the PD started without the correct tubing, it finally arrived. Brody must have been irritated with the situation as well...even though he was still receiving heavy doses of pain and sedation meds he was fighting the ventilator pretty good. This was so very difficult to watch as all I wanted to do was scoop him up and try to comfort him. It's hard being denied that natural maternal instinct. Everything I want to do I can't. I just have to sit back and watch the nurses do their job.  Brody now very much resembles the preemie that he is (yet he's still one of the "bigger babies" in the NICU). I didn't realize how swollen he was this same time a week ago. To me he looked like a plump newborn. What I thought was fat was every bit fluid. He is so tiny and skinny now that he's had so much fluid taken off with the dialysis. Here are two pictures of his feet to compare and show just how much fluid he was retaining.

3-24-12

4-2-12

Friday was another difficult day. When the nurses tell you he's been very upset and they have to keep pumping him full of meds to sedate him, it's pretty heart wrenching. Adam and I got to the hospital late that evening and again I was unable to comfort my baby. I think back to the days when Ryder was a newborn and he'd be screaming his little head off. I'd pick him up and rock him. Pace the room with him in my arms, crying with him and begging him to tell me what was wrong. I'd pass him to Adam and he'd swing him in his car seat. I'd burp him or try to feed him. Change his diaper and laugh as he always seemed to pee right when I took his diaper off. Then smile and caress his face once he finally stopped crying, feeling a sense of accomplishment knowing I really can do this whole mommy thing. ..It's such a different experience now. I see my baby cry, although I cannot hear him, and the most I can do is offer my finger for him to squeeze.

3-28-12

Just as I was struggling to leave Brody once again and after Adam and I prayed over him for the billionth time, I checked my phone and saw that I had a message on Facebook. It was from a sweet friend who offered some much needed words of encouragement. I told her and I will tell you the same...It never ceases to amaze me, somehow I always get a hug (whether real, or through writing) right when I need it. God must know when I need a friend to remind me that He is present and listening to our prayers. I left the hospital that night with a little more peace in my heart than when I arrived.

Brody was three weeks old this past Sunday. And what a great Sunday it was. We started the day out at Church for the Palm Sunday service...Ryder got to walk down the isle waving a palm branch and my heart swelled with pride. Church was followed by a delicious lunch at the park and an Easter egg hunt which Ryder LOVED. He even got to sit with a real bunny. How I wish I could have taken pictures of both my boys that day. The weather was perfect. And I can only imagine how handsome Brody will look with the sun shining down on his face!!  ...When Adam and I got to the hospital Brody was awake and alert...I think he was waiting for us! We still can't quite determine what color his eyes are, although I know they'll probably change. I think they're blue. Adam sees hazel in them.  Either way, they are gorgeous and I love when he has his eyes open and looks around, blinking hard and slow, his right eye slightly bigger than his left. It's so much easier to stand at his bedside and just stare at him when he looks comfy and content. Much easier on my heart. I kissed his head a million times (as I do every day) and told him how proud I am of him. He's so strong and so tough. And he amazes me everyday.

4-1-12

Yesterday I got to hang out with Brody for a couple hours before they started dialysis. He still looked comfortable and even slept through two heal pricks. His blood gases were good and Dr. Kapasi ordered the respiratory therapist to not go up on the ventilator anymore unless there's a real emergency. He said that Brody is handling the decreased settings very well and he thinks, even though his numbers aren't perfect, that he could be taken off the ventilator soon. In his words, "If we try to achieve perfect numbers, he will never come off the vent".  Dr. Kapasi is only hesitant to extubate him because with dialysis his breathing could become compromised and he wouldn't want to intubate him a third time. They started dialysis around noon and for some reason, Brody held on to a lot of fluid. When we called later that evening, his night nurse Heather (we really like her and thankfully she has taken Brody on as her primary patient) said she could already tell he was getting puffy again. I'm really hoping the doctors figure out exactly what's going on in his tiny little body today during the renal scan. Adam and I will head up there after dinner tonight and I am anxiously awaiting a call from the doctor to explain the test results to me.

I love his little elf ear! :)

Until then, here are just some facts from the past week:


Tuesday (3/27):
-Weight: 2.67kg (5.88 lbs)
-Low Calcium. Added to IV
-Weaned ventilator
-16 passes of PD
-O2 got down to 36. Gave him Ativan to calm him down and bumped up O2
-Dialy-Nate tubing 3 hours late.
-Started feeds at 2ml/hr

Wednesday (3/28):
-Weight deferred
-Weaned ventilator and O2
-12 passes of PD
-Feeds increased to 4ml/hr
-Lots of tremors. Could be side effect of sedation meds or imbalanced electrolytes
-Lungs sound much clearer.

Thursday (3/29):
-Weight is 5.57 lbs
-12 passes of PD
-Decreased Vent and O2 some more.
-Feeds increased to 6ml/hr
-PD solution was changed back to 2.5 (to not draw out so much fluid)
-Nephrostomy site leaking a lot
-Sore on bottom
-According to Dr. Kapasi, he has some degree of hypoplasia. I refuse to believe this.

Friday (3/30):
-Weight is 5.5 lbs
-12 passes of PD
-Still weaning vent and O2
-Fentanyl decrease by 1/2 plus boluses when needed.
-Ativan every 4 hours
-Feeds increased to 8ml/hr

Saturday (3/31):
-Weight down to 5.46 lbs
-Feeds increase to 9ml/hr
-12 passes of PD
-Chest xray looked good
-Vent pressures down some more
- Off Fentanyl and now on scheduled Morphine and Ativan

Sunday (4/1):
-Weight back up to 5.5 lbs
-12 passes of PD
-Feeds up to 10ml/hr
-Best blood gas he's had yet

Monday (4/2):
-Weight is 2.58kg (5.68 lbs)
-12 passes of PD (retained a lot of fluid)
-Potassium low (added to IV)
-Feeds increased to 11ml/hr and will increase by 1ml every 12 hrs until he reaches 16ml/hr.
-IV in arm removed
-Received high dose of iron to bump up red blood cells (along with EPO shots)
-Taken off Ancef and will now receive oral antibiotics
-Still receiving scheduled Ativan but Morphine is now on a as-needed basis
-Chest xray showed hazy right lung (he has to lay on right side during dialysis)
-Hyperal being changed to clear fluids.
-Remain on Lipids for calories.

Another set back...and a good science lesson

First I'm going to apologize (again) for the technical aspect of this post. I plan on printing it out for record keeping purposes so there's a lot in here that I know is boring to read.

On Sunday (3/25), Adam and I were able to spend most of the afternoon with our now 2 week old, Brody. He was still pretty tachypneic (meaning he was breathing very rapidly) but not as bad as the day before.  Dr. Greenbaum ordered more dialysis to try to take off more fluid from Brody's lungs. But this time he didn't order just 6 passes, or 10 passes...he ordered pass after pass after pass until they saw some improvement (but with a shorter dwell time and longer drain time).  Because Brody was losing so much fluid it was important to really monitor his heart rate and blood pressure closley to make sure they weren't taking off too much fluid.  His heart rate was elevated but that could have been partly because of the albuterol treatments.  Brody's electrolytes were still off a little bit so he received sodium phosphate through his IV line.  He seemed to be have a good response to the dialysis. We left the hospital in time to pick up Ryder, get some dinner, and spend a few hours with the little stinker.

That night after putting Ryder to bed, I got upset thinking about everything that Brody is having to deal with and everything that he will have to face in the future.  I thought about how he will have to take medication every single day of his life...how, even though this is manageable, this is not curable.  I thought about how he might not be able to play sports or wrestle with his brother. How a transplant only last a few years. Then, at the most perfect moment, a friend sent me a message:

"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9 ... so many times we can feel so defeated and weary because we are tired and we aren't as strong as we want to be but that is why his arms are so mighty and his strength is all powerful...God knows that the strength that comes from wrestling with our fear will give us wings to fly. (Paula Rinehart) I know we aren't suppose to worry but that is our human nature it doens't mean we don't TRUST our Lord... remember he knows your heart and your thoughts and everything that is going on right now...so cry out to him and rest in knowing that he will see you all through this! 

Those words felt like a giant hug and I felt a sense of relief wash over me. I wiped away my tears and finally went to sleep.

This morning (Monday 3/26), Adam called the NICU to check on Brody. His nurse, Jessica said he was stable and pretty much the same as yesterday. That was around 8:00am.  I dropped Ryder off at daycare and went back home to get ready to go up to the hospital. Jessica called me around 9:30am and said Brody looked like he was really struggling to breathe and his heart rate was still pretty high. She told me the doctor was on the way to look at him and a chest x-ray has been ordered and she'd call me back after the doctor got there. I quickly finished getting ready and swung by the shop to pick up Adam.  About 10 minutes before we got to the hospital, Jessica called me back and said they had to reintubate Brody. Yep, back on the ventilator.

When we walked into the NICU we saw little Brody with the breathing tube back in his throat and sedated...on a Fentanyl drip to keep him comfortable, and looking pretty pale.  He was still tachycardic (fast heart rate...yes, I love learning all these fun medical terms) but his respiratory rate was now normal. Jessica explained to us how it really looked like he was struggling to breathe and she was worried he would soon get too tired and just stop breathing. Dr. Kapasi showed us his chest x-rays and the fluid in his lungs was pretty evident (and directly related to kidney failure).  A blood gas was also done and showed that his blood was slightly acidic so they gave him sodium bicarbonate through his IV.  ...and Zantac was ordered because they're hopefully going to start feeding him tomorrow. Now that he's on the ventilator and off the high flow oxygen it's safer to give him milk. This will still be done through the TP tube (tube that goes into his duodenum).

Brody also had a blood transfusion today. (Brody is AB-the universal receipient, and received O blood-the universal donor). Because they are having to take so much blood from Brody (for lab work), his little body can't keep up...they're taking blood faster than he can make it (because he's premature). The EPO injections should also help but they wanted to go ahead and give him blood for a "boost".  He received 40cc's of blood over 3 hours.

Brody had 16 passes of dialysis today as well (back to the 40 min dwell, 15 min drain). His weight has dropped from 6.5 pounds on Saturday to 6.1 pounds today...mainly just fluid loss.

To top off our fantastic day, Adam's phone was stolen...in a children's hospital of all places. I just don't understand how someone can find a phone and not turn it in. We checked with security and even sent the phone text messages pleading for them to return it.  Even offered a reward! Not only did this suck because Adam lost all his contact numbers (including customer's numbers), but he had tons of pictures of Ryder and Brody...and that's just heart breaking. But if someone is that desperate that they have to steal someone else's phone then I guess all I can do is pray for them...it's just a material item and apparently they need it more than we do.  But we still notified Apple and gave them the serial number so it can be flagged as stolen. :)

Thank you again for all the prayers. I know God is working his magic on my baby. Seems like we have done a 180 from this time last week but I have faith that Brody will be ok. It may take some time but I know he'll be home with us soon and Ryder will finally, FINALLY, get to see his brother.

2 Steps Forward, 1 Step Back

I've tried really really REALLY hard not to worry about Brody.  In my heart I know everything will be ok.  I know there are more prayers going up than I could even fathom.  Yet somehow I still worry. Maybe I'm confusing the emotions.  Maybe I'm just sad.  I want to scoop him up, rock him back and forth, and kiss him to make him "all better".   It's such a helpless feeling standing by his bedside while the nurse pricks his tiny heel to get more blood...or flips him to his side to try to drain more dialysis solution from his abdomen...or adjusts his oxygen as his breathing gets more labored. I've changed his diaper 3 times since he was born. That's about as hands-on as I've been able to get.  I have held Brody a few times now, but as stated previously, I literally hold him as still as possible. I don't rock. I don't bounce. I don't hold him against my chest and pat his back. I pump every 3 hours, yet Brody hasn't been fed in 5 days.

Brody still desperately needs our prayers.

Monday evening (3/19) after I left the hospital, the nurse started the dialysis treatment but couldn't get the solution to go in. They thought there might be a kink in the catheter.  An X-Ray showed no kinks and by the time the surgeon arrived, the nurse was able to get the solution into Brody's little body. They did 2 of the 6 passes but they weren't able to get out all the solution so they stopped the dialysis treatment (if they put 50cc's in, we hope to get 50+cc's out).

On Tuesday, Abby went with me to visit Brody and he seemed pretty puffy. Makes sense since retained so much of the fluid from the day before. He did manage to open his eyes while I was holding him but also cried a lot...which made me feel just horrible. I wish I could ask him "what hurts?".  Not a new feeling since Ryder just recently learned to answer that question.  But still a feeling I don't think any parent enjoys. The doctor ordered 10 passes of dialysis to hopefully draw off some more fluid.  The next day when Adam and I saw him, he was definitely WAY less puffy than the day before.  They continued to do 10 more passes.

Thursday, Brody's lab work showed that he has low iron and low potassium. His nephrologist also reiterated to me that he needs more protein which will help his puffiness.  She said the best way to get more protein is to give him milk (b/c there's only so much the body can absorb through the IV) but because he is still on the high flow cannula, they cannot give him feeds.  The neonatologist decided to put in a TP tube so that they could continue the feeds.  A TP tube goes in through Brody's nose, down his throat, into his stomach "and beyond" (that's how the Dr. explained it to me).  And they could only give him a maximum of 2ml of milk per hour (but they would have to build up to that). The reason they cannot feed him without the TP tube is because being on the high flow cannula, he has a greater chance to aspirate. The TP tube significantly reduces this risk. I also learned that the kidneys produce a hormone called Erythropoietin that regulates red blood cell production. We will have to give Brody 2 to 3 injections per week of this hormone.  Since Adam is so good with giving shots, this will be his job :).  That night they were going to continue with 10 more passes of PD but Brody was had a rough night (a.e. 60s) and they had to crank up his oxygen and were only able to do 6 passes.  And they weren't able to start feeding him either.

Brody looked so good on Friday. The puffiness in his face was a lot less noticeable and he was awake and alert for a good bit while my mom and I were there. His PD solution was adjusted to take off even more fluid and give him more potassium. But when Adam and I were with him on Saturday his respiratory rate was very rapid. The nurse practitioner said he has a lot of fluid around his lungs which is making it very difficult for him to breathe. The respiratory therapist gave him a breathing treatment with Albuterol which made his heart rate increase as well and he was getting an injection of sodium phosphate through his IV. Everything is such a delicate balancing act and the nurse gave us a warning about the future.  She said there are going to be a lot of set backs. Once we get his PD solution figured out, anytime he gets sick it's going to throw him off balance and it will be back to square one trying to figure out the best PD solution again.  She also told us that they only get one "renal baby" a year.  Lucky Brody.  And that's the reason he's had a different nurse almost every day....they're all getting a chance to learn how to do the dialysis treatments.  ...Because his respiratory rate was so high (peaking at 170+ per minute) they only did 5 of the 6 passes. He was also leaking a lot of fluid at his nephrostomy site so the nurse did some lab work to make sure he didn't have an infection anywhere. ...He doesn't. Thank God. I got to hold him again for about 45 minutes and this time he didn't cry. But that might have been because of the pain medicine he received right before I held him.

12 days old

I pray that he is one day able to run and play with his brother without the assistance of oxygen and without tubes hanging off of his little body.  I am so thankful for all the prayers, words of encouragement, cards, gifts, and love that everyone has poured out to Adam and me. I ask that you continue to pray for my sweet baby Brody, specifically that he's able to be weaned from the oxygen very soon and that they can start feeding him as well. Please pray that the doctors are able to figure out the best solution for his dialysis and that he continues to be free of infection. I never realized exactly how much our kidneys do for our bodies. If you think (like I did) that all your kidneys do is produce urine you are very very wrong. Show your kidneys some love and visit www.kidney.org to learn all about how to keep your kidneys healthy. :)  Did I just sound like a commercial?

Birthday Wishes Do Come True!

The past few days have really shown that prayers are being answered! On Friday, March 16, we started the dialysis treatments. I'm going to get a little technical but this is mainly for my record keeping...hopefully it's not too boring to read. Brody started with 6 passes of 40ml of dialysate solution. The process of  continuous cycling peritoneal dialysis consists of 3 basic steps. All of which are currently done manually by Brody's nurse:
1: Fill for 5 mins
2: Dwell for 40 mins
3. Drain for 15 mins
...More fluid was drained than went in...Brody is pretty puffy, especially around the face, because he's retaining a lot of fluid. So more coming out than going is is a good thing. Interestingly, the dialysate is basically just sugar and salt. The high level of glucose pulls the fluid from the blood through osmosis. Did we all pay attention in Science class?? :) 

After his second treatment on Saturday, Brody's blood tests came back and showed that the dialysis was doing it's job.  Dr. Kapasi told us that he had cut the pressure down even further on the respirator he was hopeful that they could remove the breathing tube within the next day or two.

First PD Treatment

Sunday morning, my 29th birthday, Dr. Kapasi called to tell us they had extubated Brody and he was now breathing completely on his own!! They removed it around 9:45am....almost exactly (within minutes) one week after he was born. Nine doctors told me, before Brody was born, that there was a good chance his lungs would be hypoplastic and not developed enough for survival. Man did my baby prove them wrong!!

After a good ol' Irish lunch (corned beef minus the cabbage :) with Adam and Ryder at my mom's house, Adam and I went to spend the rest of my birthday afternoon with Brody. Here he is without the ventilator down his throat...I bet that felt good to get it out of there!!

When we walked into the NICU I immediately washed my hands before even looking at Brody. As I washed my hands I heard him cry for the first time! That was the sweetest sound I have ever heard. I think I traveled the next 10 feet to his bed in one large leap. It was such a precious sight to see him cry as well. Up until this point he had been pretty sedated...either that or he was ALWAYS sleeping when I was there. ...The tiny tube in his mouth is the vent  going into his belly. After removing the ventilator, Dr. Kapasi kept him on high flow oxygen (the nurse described this to be like hanging your head out the car window while going down the highway) and said he would attempt to lower the oxygen later. They also stopped his feedings while on the high flow. (btw, his feedings are now up to 9ml/hr.).  Dr. Jernigan said his blood work was so good that he didn't need the PD treatment either!

On top of all this great news, I got to hold my baby for the first time since the day he was born! I couldn't have asked for a better birthday present!! I got to hold him for about an hour. Although I admit, I was pretty nervous because he still has so many tubes and wires all over him. Brody was also visited by his Aunt Jenny and Uncle Jeff. Brody never opened his eyes while Jenny and I were in there, but Adam and Jeff got to see him open one eye. I guess he likes hanging with the boys :)  I'm glad Adam got to hold Brody as well. It's such a process moving him and all the equipment...bless the nurses!

I tried to give Brody the pacifier (which the nurse had flavored with vanilla) but Brody didn't seem interested. I loved hearing him cry but at the same time, I kind of felt a little helpless. I thought maybe he's uncomfortable, maybe if I just hold him a different way...but I didn't budge. I kept checking to make sure no lines were tight and that his oxygen cannula wasn't coming out of his nose! It was so hard to leave him on Sunday. I was so proud of the progress he was making...and this time he was in reach to give him kiss after kiss.

Today, Monday, I got to hold him nearly the entire time I was with him. He is now on the regular flow oxygen and still doing great. They started feeding him again through a tube in his nose ...which he pulled out while I was holding him...freaked me out just a tad! The nurse then put it back in through his mouth. He seemed to like that better. I don't blame him. Dr. Kapasi said they would try bottle feeding him maybe next week. And his blood work is still great so no dialysis again today. Dr. Jernigan said it will be ordered on an as-needed basis. I'm hopeful this means his left kidney, or cyst, or whatever it is, is doing SOMETHING. The doctor sent off the fluid from his nephrostomy tube for more testing. It sure does look an awful lot like urine. But previous test were inconclusive.

One of the Urologists came by and took out the catheter that went into his bladder. He's now gone from 7 tubes in his tiny little body down to 5.  Although it sucks that this catheter proved nothing is going into Brody's bladder, I sure am glad it's gone. The catheter went in right above the pubic bone and to my surprise didn't require a stitch or anything. The nurse just put a bandaid over it. ...Ryder would be jealous of Brody's bandaid collection.

I am thankful for each tiny step in the right direction. Everyday is one step closer to bringing him home. I know we still have several weeks to go but it's encouraging to see such amazing progress in just one week. What a party we will have for Brody's homecoming!

Getting some answers

Today I went to see Brody with his Nana, Adam's mom. When we got there, Brody was sleeping as usual and looked good. Still a little puffy but not bad. One hand was being held down by his blanket (I'm guessing he tried pulling on some tubes) and his other hand was holding on to the wire connected to his thermometer. Apparently I woke him up by touching him too much. He started to squirm and got a little "agitated" (as the nurse said) so the nurse gave him some pain meds and he went back to sleep. Brody's feedings have been increased to 5ml/hr and he is still breathing room air (21% Oxygen). The docs continue to decrease the settings on the ventilator so I am hopefully they can remove it within the next few days.

Dr. Elmore (urologist) and Dr. Jernigan (nephrologist) came to speak to me at the same time...minutes before I was about to leave.  Dr. Elmore explained to me that the test they did yesterday showed no leaks from the catheters in his abdomen and no malformation in his bladder or urethra. Although his bladder is very small since it never filled with urine while developing. The tests also showed that both kidneys are Multicystic Dysplastic Kidneys (MCDK)...usually if a baby is born with MCDK they have at least one working kidney. The cyst on the left kidney is continually filling up with fluid although it's not a waste product like urine...it's more or less water...and might have to be surgically removed. Dr. Jernigan said his Potassium is still good and his BUN (Blood Urea Nitrogen) and Creatinine levels are still within range although they are rising. She said they will most likely begin dialysis tomorrow morning at about 30cc's (a very low dose). To be on a dialysis machine Brody has to be a certain weight and he has to be up to 60cc's so until then, dialysis will be done manually.

I asked Dr. Jernigan if she could estimate about how long Brody would be in the NICU. I asked, "I know there are a lot of factors but are we talking several weeks or several months?"  She said most NICU babies are there until at least their due date (so we're talking mid-April) and he has to be breathing on his own, eating without a tube, and on the dialysis machine. Adam and I will have to have several days of training at Egleston on how to work the machine. I also think I should get another degree after all this. HAHA.

I have to say, I didn't get the great news I was hoping for today (lucky number 3), but I think a little stress has been lifted now that I have some more answers as to what is going on and what is going to happen.

And I got my kiss :)

An emotional day for me

Today I went to see Brody with my father-in-law, Jimmy.  When we got to the hospital, Brody was less sedated and was moving around a good bit. His face is still pretty puffy so I doubt he could open his eyes even if he wanted to. Our visit was short but sweet. I put my finger in his hand and he gently squeezed it. When I rubbed his tiny little foot he stretched out his leg and showed off his long limbs (and adorable wrinkly knees). When I stroked his soft brown hair, he raised his little eyebrows. I silently played "this little piggy" and sang him Ryder's favorite song, "twinkle twinkle little star" in my head. ...maybe he could still hear me.

We were only there about an hour before they took him away to do some sort of tests. I didn't quite understand what all they were doing and after asking twice the nurse seemed a little agitated with me. That and her accent was very strong and I couldn't really understand every word she said.  But from what I understood, the nephrologist, urologist, and radiologist were all going to be there...they were going to inject a dye into a couple of his catheters and take a few x-rays to see where the dye was going. Two of the catheters are leaking and I think the nurse said the doctor was going to look at that too. She didn't seem overly concerned about it. The nurse said it would take an hour or two to do the tests and then several more hours before we had any results. So in an effort to beat the Atlanta traffic, Jimmy and I decided to head home and not wait in the waiting room all afternoon. They placed him in the transfer unit before I could give him a see-you-later kiss and I didn't feel comfortable giving him a kiss after that because the Respiratory Therapist was manually ventilating Brody and I didn't want to get in the way. I pray that he knows how much he is loved. And even though I can't be there with him 24/7 he's not alone.

Jimmy and I walked down to the cafeteria, grabbed us some lunch and went home. ...on a side note... I think it's really awesome that CHOA gives a 25% discount at the cafe to all parents and a $6 credit if you are a nursing mom. Adam and I had dinner the other night for $2 and some change.

Anyways, I called the NICU around 6pm to check on the results of the tests but the nurse said it would be morning before they knew anything. She told me she decreased his settings on the ventilator and he was handling it very well. They also started to feed him.  He's now getting 2ml of breast milk every hour. The tube that was in his belly to release air is now the tube they use to feed him.

Adam called again to check on him right around bed time and the nurse said he is still doing good and handling the feedings well. She said she even gave him a bath tonight which he tolerated well too.   Here is today's picture of my little angel.

Now if I could just stop crying and go to bed tomorrow would be here much sooner and I will be able to give him that kiss that I missed out on today.