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.

Surgery No. 2

Tuesday we all treated ourselves to a late morning and slept in. After getting Ryder off to school Adam, my mom, and I went back to the hospital to see Brody. When we arrived we found Brody with the Picc Line in his head and unfortunatley the tip of the line was still in the wrong spot. An x-ray showed that it was about a centimeter from where it needed to be. ...three attempted picc lines, failed. The last option was another surgery to place a central line in his chest. The doctor also wanted to go ahead and put the catheter for dialysis in Brody. Dr. Brand, a pediatric surgeon, explained to us that he needed to go ahead and do the surgery now so it would have time to heal before they would have to use it.  The pediatric nephrologist, Dr. Jernigan, told us she's only seen it happen twice where they've placed a dialysis catheter and not needed it. ....We're praying that Brody is lucky number 3!

The surgery took about an hour and according to the docs, it's a very simple surgery. Brody did really well but my poor little guy is very swollen and puffy from the 2 surgeries. Here he is, after surgery number 2...

...His eye is all red because they had tape over his eyes. And he's now sporting a bald spot thanks to the failed attempt at the picc line in his head.

I wish I could just scoop him up and love all over him and tell him everything is going to be ok. Instead, all I can do is talk to him and touch his little hand or foot (which is like a little pin cushion, constantly being stuck to get some blood). ...I'm so hesitant to touch him too. After scrubbing in once we get to the NICU and then washing our hands after touching ANYTHING, I am still scared of germs. There is an extremely high risk of infection with all these tubes going in and out of him...7 different tubes in him at this point: breathing tube in his throat, a tube in his stomach to suction out air that gets in his belly, the central line in his chest, the IV in his hand (soon to be removed), dialysis catheter, tube to drain fluid from his kidney, and catheter in his bladder.

We stayed a while and then said our "see you laters" to Brody. It is so incredibly hard to leave him and I doubt it's going to get any easier. We called the NICU later that evening to check on Brody and the nurse said he was doing just fine.

Once at home, we selfishly let Ryder stay up a little late so we could give him some attention...I've felt a little like a neglecting mother lately. We had a good time playing with stickers and then paid for it when we tried to get Ryder to bed. I think he was overly tired because he put up a good fight. He finally, through tears, said "I want to say prayers for Brody!". So we said our prayers and Ryder fell asleep. A good sleep too...I don't think he moved all night!

Transferred to CHOA

Monday morning we got up and headed upstairs to check on Brody. He was stable...heart rate was good and oxygen saturation was normal...however the nurse said they did try to take him off of the ventilator but he struggled a good bit so they had to keep him on it...although they were giving him just room air and not Oxygen. The nurse asked if we wanted to hold him...Some people say there's no such thing as a stupid question...wrong. OF COURSE WE WANT TO HOLD HIM!! Since it seemed to be a complicated task to pick him up with all the wires and breathing tubes, I passed on my turn (since I held him the day before) and made sure Adam got to hold Brody (which he hadn't yet had the chance to do). So, here is Brody holding his daddy's hand...my heart melts...

 
The nurse told us Brody would be transferred to Children's Health Care of Atlanta sometime around lunch so Adam and I went back to my room to try and catch a few more zzz's ...neither one of us had had more than 2 straight hours of sleep since Friday night. ...Interrupted again (this time it was worth it), my doctor came in and I was again asked a very stupid question. "Would you like to be discharged today or tomorrow?"...um, TODAY THANKS! :)   Yay!! This meant I could go with Adam when Brody was transferred to CHOA.

The CHOA Transfer Team came to our room with Brody in an incubator...machines and wires everywhere making sure he was stable...and told us they were heading out. I never in a million years ever thought I would be in a situation like this and see my son being wheeled out of a hospital like that. And how weird and empty I felt being wheeled out of the hospital myself without a baby in my arms. I thank God it was not an even worse scenario, which I know it could have been. Apparently Northside is one huge baby factory so if you go outside at any time of day you can almost guarantee yourself that you'll see a new mom and her baby being loaded into the family car. ...Adam and I walked by ourselves (very quickly might I add) through the parking garage so we could quickly jet across the street to see Brody again. Here is the set up at CHOA NICU

They immediately started working with Brody. First they did an ultrasound and they believed that the mass they saw in his abdomen was not his kidney but instead they thought it was his bladder. Adam and I had a little hope that this was true. Then they could just fix whatever was blocking the urine from getting out of the bladder and his kidneys would be good and this nightmare would be over. Dr. Elmore, a Pediatric Urologist attempted to put a catheter in Brody but was unable to do so, so they decided they needed to go into the operating room. Brody went in for his very first surgery that same day. Dr. Elmore came to speak with us after the surgery and it was in fact his kidney, NOT his bladder, that was enlarged. Dr. Elmore drained 200cc's of fluid from Brody's left kidney (that's nearly 7oz) and left the drain tube in (it comes out of his abdomen) and he also put a catheter in his bladder to see if there was any fluid at all in the bladder...there wasn't and still hasn't been any. A chest x-ray showed that his lungs were able to expand a lot more...REALLY good news since all the doctors were saying there was a good chance he would have hypoplastic lungs.

Pre-Op

After surgery, a nurse explained to us that they were going to put a Picc Line in Brody's arm since the veins in his hands are so small and delicate. This is a more permanent line for his IVs (this is a really long line that travels from the entrance site to the heart). She told us if they couldn't get the line in his arm, they would try his leg, and if that was unsuccessful then it would be placed in his scalp. But they probably wouldn't attempt this until morning.

Post-Op

Adam and I left the hospital close to midnight that night. We picked Ryder up and the three of us snuggled in bed and said our prayers for Brody.

Brody's Grand Entrance

So I had mentally prepared myself to be in the hospital several more weeks. ...But I guess Brody had different plans. At about 2:30am on 3/11/12 I started to have very painful contractions. Now contractions were nothing new to me in this pregnancy but for the first time they actually hurt. Adam and Ryder were spending the night with me in the hospital so Adam called the nurse who then hooked me up to the monitor. After determining I was in active labor, I was given an IV and they started me on fluids and an antibiotic in case I needed to have a c-section. I dilated from 1cm to 9cm in about 2 hours so this was proving to be a very short labor just like I had with Ryder. I was able to have a natural birth (as opposed to the c-section I was told I would have to have) which I am so thankful for because I really didn't feel like having a long recovery knowing what I was going to be facing with Brody's health.

Brody was born at 9:43am on 3/11/12 with the cord wrapped around his neck twice. He weighed 5 pounds and 14 ounces. A healthy weight, especially since he was 6 weeks early! And he was 18.5 inches long...he's got those Johnson genes for sure! :)  ...He was immediately placed on a ventilator and taken upstairs to the NICU. Adam was able to to with him while the doctor finished up with me.  Here are his first two pictures...notice his large abdomen from the enlarged kidney. :(

Thankfully my mom and Adam's family were all able to get to the hospital and see Brody as well. Unfortunately Ryder was only able to see Brody through a window in the NICU which made Ryder very upset.  He is such a good big brother and loves Brody so much. He is constantly asking to see Brody and play with him too.  He even asks to say his prayers for Brody every night (something he's done since we found out, back in January, about his kidneys).

Later that evening I was able to go to the NICU and even got to hold Brody. One of the best moments of my life. How I wish I could have held him longer and be free from all those tubes and wires. But I know it will all be worth it and I'll be able to hold him again very soon. Let me just go ahead and add that the doctors and nurses at Northside were amazing. They made sure Adam and I knew exactly what was going on with Brody (and myself). Here are a few more pictures of our short time in the Northside NICU...

1 down ...? to go

Well it has been 1 week since I was admitted to Northside. So far so good. I continue to have 3 NSTs a day, all of which have gone well. The NSTs have shown that I pretty much constantly have contractions but thankfully they're irregular...just Braxton Hicks... and I can't feel them. Brody has looked good too. He's only had a few decelerations but most of the time the Nurses say he's a happy baby. I was told I'd have three ultrasounds per week but so far I've only had two. My last one, yesterday, was at 7:30am...a nice little wake up call. But on both BPP's I've scored 6 out of 8...losing points only because of the lack of fluid. So I consider that a win. The best part of those BPPs was that we were able to see him practicing breathing (yay for lung development), he was sucking on his fingers (learning the suck/swallow technique is important for eating...if he has to be on dialysis it will be great if he doesn't have to have a G-Tube...which I've heard is very common for "renal babies"), and we were able to see his bladder (almost impossible to see if not filled with fluid...this means the kidneys might be functioning, at least a little bit!).

The days seem to creep by but there's several things that go on in the HRP (High Risk Pregnancy) Unit. There is a Mom2Mom support group led by the Chaplin (I haven't had the pleasure of going to this yet). There is a music therapist that comes by once a week to play relaxing music and to see how the baby reacts to music. She also writes songs for all the babies. And apparently there's a "harp lady" that will sit in the hall and play her harp. I've met the music therapist but that was it...haven't heard any music yet. And today was pet visitation day. They actually just left. Two pet therapists go room to room with their dogs and stay for about 15 minutes. They were sweet dogs...but now I've got dog hair on my bed and that really freaks me out. :)  ...on a slightly interesting note, I was told by Patient Relations that I'm actually considered a short-term patient. Apparently the average length of stay here in the HRP is about 3 months. Yikes.  Oh, and the doctor finally gave me wheelchair privileges today. That means I can finally leave my room, once a day, in a wheelchair. Hallelujah!!

The food here is decent. I've only had one meal that was pretty gross...roast turkey with dressing and gravy with green beans and a cup of hot water. No lie, the gravy was green...and I'm guessing the hot water was suppose to be tea but I didn't get a tea bag. This was very unfortunate...especially because I ordered tuna salad on wheat with tomato bisque soup and sweet tea, which I was REALLY looking forward to (can you tell I'm pregnant?). Oh well. And dummy me gave up chocolate for Lent. ...9 out of 10 desserts here are chocolate. This proves I've already lost my mind. What pregnant girl gives up chocolate?!?

Well, if anyone reading this has been on bed rest before and has any tips for me on how to stay sane, I'd love to hear from you. I've heard some people think bed rest is kind of like a vacation...no work, no chores, no anything but resting. Well, I truly believe it should be changed from "bed rest" to "bed-being-bored-out-of-your-mind". There's nothing good on daytime TV...or prime time for that matter...and I can only read for so long before I want to fall asleep...no matter how interesting the reading material may be. I have a photo project I'm working on but I can only do that for an hour or so here and there because it is just so darn tedious.

Anyways, I hope everyone is enjoying this spring-like weather that I keep hearing all about. I'd open my window but the dumpsters right below me are pretty dang stinky. :)  ...I'm going to go enjoy the rest of my afternoon by myself before my visitors get here. My mom is stopping by tonight (today's her birthday) and then Adam & Ryder are coming by too. All the nurses are in love with Ryder. Such the ladies man!

Why I'm here

I've always wanted to start a blog. But what would I write about and why would anyone read it? Well now, I guess, I finally have a purpose and reason. Although I'm still not sure I know HOW to write this blog. I want and easy way to keep family and friends updated on everything that has and is going on with baby Brody, myself, and my other boys-Ryder & Adam. I've been updating facebook pretty regularly but not everyone has facebook and sometimes I feel like my status updates are a little too intense for something such as facebook.

I'm going to go ahead and apologize becuase I write excatly like I speak. ...and use a lot of dot dot dots. :)  oh, and smiley faces too. I don't have an extensive vocabulary, I once had trouble spelling the word "of", and sometimes I get a little comma happy. I'm sure my Dad, the grammar king, would have a field day reading what I write. I promise to proof read but I don't promise to catch all my mistakes.

I'm going to start from the beginning, kinda, and pretend you have no clue what's going on...so sorry this first post is a little long-winded.

Hi, I'm Heather. I'm 28 (at least for the next 11 days) and pregnant with my second little boy. Ok, I guess everyone knows that much. ...My first pregnancy was extremely normal. My biggest complaint was that my back hurt constantly. I was blessed with a very quick labor & delivery and, most importantly, a very healthy little boy. Ryder is such a joy...smart, funny, sweet (I really could go on and on)...so much so that my husband, Adam and I decided we want more kids. I found out I was pregnant and we were thrilled that our family was growing. At 18 weeks we had a regular ultrasound to check out the baby's anatomy and find out the sex. Another boy! We were thrilled...I've always pictured myself as a mom of boys...mainly because girls scare me. But also because I want a girl (I like a challenge) but I want more than 2 kids. And I think if we were having a girl this time, Adam would say "we're done".  Back to the ultrasound...the Maternal-Fetal Specialist, Dr. Rosemond said the baby's left kidney was measuring slightly larger than the right kidney. He told us not to lose sleep over it because this is extremely common (mostly in boys) and usually resolves on it's own. Dr. Rosemond explained that most likely the kidney was enlarged because of reflux up from the bladder and that the baby would grow out of it. We scheduled a follow up ultrasound for 10 weeks later.

I really didn't lose any sleep thinking about his kidneys. I have acutally had a few friends who were in similar situations and the doctors were right...everything resolved on it's own and their babies were all born healthy and happy.

Adam and I went back to Dr. Rosemond in January-at 28 weeks. The altrasound tech scanned me before the doctor came in and I remember she was very quiet. She told us his heart rate looked good. Thank you God. Then I'm not really sure what happened but I remember seeing this large black circle and Adam said, "THAT'S the kidney??" and the tech said yes. My heart sank. The tech said she was sorry and that Dr. Rosemond would be in to talk to us in a few minutes. After Dr. Rosemond scanned me he explained to me that this was an extremely severe case of Hydronephrosis and there was probably some sort of obstruction that wasn't allowing the kidney to drain into the bladder.  He also told us the baby's right kidney had multiple cysts on it, although it was of normal size. Not only were there these isssues but the the left kidney was pressing up against the diaphragm and pushing the heart over.  The heart, having to work extra hard to pump blood, had thicker than normal walls and had more fluid around it than normal. The doctor told us he could count the number of times he had seen something like this on one hand so he wanted to talk to his "collegues across the country" and come up with a plan.  ...I held it together in the doctors office...but fell apart once I got to the car and called my mom. Thank God my wonderful, supportive husband was with me to not only drive but also to explain everything to my mom because I couldn't even speak.

So just 4 days later I went to St. Mary's Hospital in Athens for a proceedure to drain the baby's left kidney. It was very similar to an amniocentesis except instead of just drawing fluid out of the uterus, the needle went even further...into the baby and into his kidney. I had Adam by my side and the doctor, ultrasound tech, OB, 2 nurses, and several nursing students in the room as well. They drained about 120cc's of fluid although the kidney didn't shrink down nearly as much as the doctor had hoped. His heart was more midline...so that was a plus. I ended up staying the night in the hospital (I was suppose to be in and out of the hospital in about 2 hours) because I started having contractions and the baby's heart rate kept dropping after each contraction. With the fear that I was going into labor I received 2 steroid shots to help the baby's lung development. Thankfully, I was not in labor. And at an ultrasound just 4 days later the kidney was back to that huge mass it was before we drained it. Since the proceedure didn't seem to be that beneficial the doctor suggested we not do that again. He also told me that I'd most likely have to have a c-section becuase the baby didn't seem like he'd tolerate labor too well.

At this point, I was seeing Dr. Rosemond every week for an ultrasound (along with my regular OB every 2 weeks for a normal prenatal visit). The kidney seemed to be getting about a centimeter bigger every week and my amniotic fluid kept getting lower and lower as well. Early in pregnancy the mother produces the amniotic fluid, which the baby breathes in and out (this is how the lungs develop), and also swallows, digests, and then is excreted as urine. Lovely huh? But later in pregnancy, apparently, the mother doesn't produce much (if any...I'm still confused by this) amniotic fluid. It's just kind of circulated through the baby...he swallows it and pees it out...over and over. Well, since my baby's kidney's aren't draining into the bladder it only makes sense that the amniotic fluid keeps decreasing. This low fluid is called Oligohydramnios and poses a major problem...lung development...or lack thereof. Even though I had the steroids, Dr. Rosemond explained that if the amniotic fluid is low and the baby's not exercising his lungs, no amount of steroids is going to help. He said it's called Pulmonary Hypoplasia....or hypoplastic lungs. This is were the lungs are small and stiff, most often caused from some other congenital defect, and a leading cause of neonatal death. NOT GOOD. If his lungs aren't fully developed, well, there's really nothing they can do for the kidneys. And if that wasn't enough to worry about, Dr. Rosemond was concered about a "cord accident".  Amniotic fluid also cushions the baby and the umbilical cord and without that fluid there's a chance the baby could press up against the cord, cutting off the blood supply. So now I was to be monitored twice a week. I went to my OB on Mondays for an hour long non-stress test...or NST. And then back to Dr. Rosemond's office on Thursdays for an ultrasound.  My first NST sent me back to the hospital because the baby wasn't very reactive and after a BPP (Biophysical Profile) the doctor decided I needed even more monitoring which could not be done in her office. We had previously met with a Pediatric Urologist who explained to us what we could expect after the baby's born, if everything is ok with his lungs. Basically the plan would be to place a shunt in the kidney to drain it and then go from there. Apparently a baby lives off of his mom's kidney function for the first 2 days of life unitl his own kidneys kick in. So we won't know how much, if any, kidney function he has until then. The Urologist convinced us (which wasn't hard) to deliver at Northside Hospital in Atlanta since it was right across the street from Children's Healthcare of Atlanta at Scottish Rite. So now I had to meet with a whole new group of doctors.

The plan was to meet with my new Maternal-Fetal Specialist, Neonatologist, and then OB.  Unfortunatley the first doctor I saw was extremely concered about the no (that's right, not low...but NO) amniotic fluid and immediatley admitted me into the hospital for continuous in-house monitoring until the baby gets here. I was really hoping I was having a bad nightmare. But it's been 5 days and I haven't woken up yet.  You know, I will do whatever I need to do to make sure my baby has a chance for a normal life...but I never thought bedrest would be part of this process. I know bedrest isn't all that bad in the grand scheme of things but 7 weeks in a hospital just plain sucks. With the exception of visits here and there, that's 7 weeks without Adam and Ryder. Which just makes my heart ache. Up to this point I have only been away from Ryder for a couple of nights. And that was just this past December. I've also thought about everything else I'll be missing...work...my nieces (chilren under 12, other than my own, are not allowed in the hospital)...Easter...the 3 days of spring that we have here in GA...and I get to spend my last birthday as a 20-something here too.

Taking advice from a co-worker and friend...I'm not worrying about what's going to happen with baby Brody once he's born.  If I worry and something bad happens then I've lived through it twice so I'm giving it up to God. And because of the wise words of another friend & co-worker, I'm praying for a miracle and I believe in that miracle! Continuing to pray is really all I can do.

That's about it for now. I've had a good bit of visitors and I spend my days trying not to be too bored. It's acutally pretty busy here, especially in the mornings. I see the regular OB, M-F Specialist, several nurses, techs, food service folks, snack cart lady (she's my favorite), Chaplin, Music Therapist (she's interesting), house keepers, Nutrionist, Neonatologist, & Pediatric Nephrologist almost every day (some of these fine folks I get to see several times a day). It's almost hard to get anything done...like a shower...without being interupted.  The monitoring has been going well. I'm usually hooked up for about 30 minutes depending upon how Brody's heart rate looks. Sunday, when I had several visitors, I ended up being monitored for 2 hours. That wasn't very fun. My last ultrasound went well also...Brody was sucking on his fingers and the doctor was able to see him doing his breathing exercises so that makes me very optomistic about his lungs.

I must add that I have some amazing people in my life. I am so thankful for Adam...for everything that he has done for me and everything he is doing now that I'm stuck in the hospital. I can't even begin to come up with the words to thank him adequately. My mom and in-laws for all their help. Friends and family near and far that have sent gifts, called me, sent me cards, and who have come to keep me company for a little bit. Everyone, even strangers, for their prayers. And for Ryder, who gives me the biggest hugs and kisses when he comes to see me. And for wispering "I wuv you, Mommy" in the middle of the night last night (he and Adam spent the night with me...and even though I had a horrible night sleep, it was the best night I've had all week).

I think I've dragged this first post on long enough. Did you make it to the end? Or was I so boring you stopped reading after the fourth paragraph? :)  ...well, we'll see what tomorrow brings.