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.