Wednesday, September 30, 2015

Grayson's first three weeks

& first hospitalization


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coming home from the hospital

Grayson was born on Monday night. We came home from the hospital on Wednesday morning.

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our tiny little guy!

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at Grayson's first doctor's appointment


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on Friday my mom & I made cookies  
which meant that I sat in the sunshine of the kitchen and took pictures of Grayson on my phone and read the recipe while my mom made the cookies.

My mom went home on Saturday.

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We took a drive on Sunday
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Daniel took this picture over the weekend

Monday - Grayson turned one week and we had our first day back to "normal"

A photo posted by faith raider (@faithrphotog) on

Tuesday - we spent most of the day on the couch. In the afternoon I noticed that Grayson felt a little bit warm. I took his temperature and it was already 101.5(f) any fever in a baby this little is worth worrying about so we called a friend to come watch the kids and Daniel & I took Grayson to the Emergency Room. But Grayson wasn't displaying any other symptoms and his temperature was going up and then coming back down, then going back up again - so we were sent home. I took Grayson back to the ER around 11pm on Tuesday night. His fever high enough that this doctor decided to do a few tests just to see what was going on.

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They drew blood, put in an IV, and took a urine sample. It took several tries for them to get enough blood for their tests. It was pretty rough, but Grayson was really calm, or when he did cry he would calm down again quickly. Unfortunately his urine sample came back with white blood cells in it which meant a urinary tract infection which meant that they needed to do a lumbar puncture to rule out an infection in the spinal column. The spinal tap was not as bad as I thought it would be - the emergency room doctor was concerned that Grayson didn't cry more during the procedure but I was thankful he didn't scream the whole time. It was awful enough without that. I basically just stood in the corner, praying and hoping I would not pass out. Grayson was started on antibiotics while we waited to be transferred to the children's hospital.

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We spent Wednesday at the Children's Hospital - we were told we would spend a minimum of 48 hours in the hospital, until the blood cultures were finished being processed.

That was really hard to hear. I was not prepared to spend that much time away from my family and it was pretty scary having my baby hospitalized and not being there for my other kids.  I never thought I'd see the day when I would miss homework time - but I really did! Daniel & Eli came to visit us in the hospital and I cried when I saw them. I hated how much stress I knew this would put on all of the kids, but especially Eli. I called my mom and she came back to help us out.

A photo posted by faith raider (@faithrphotog) on

My friend Olivia brought me some breakfast, a tall coffee and a big hug. She had been at this hospital for three days with her son and knew a lot of what I was going through. It was so nice to see her! Daniel got the day off so he was able to come see me.

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Daniel & Grayson
On Thursday we got more bad news - the blood cultures were testing positive for bacteria, we had to wait 24 hours more to know exactly which bacteria it was but they said it was something from the urinary tract infection which meant that the infection was in his blood stream. The doctor told us this meant a minimum of  5-7 days of antibiotics in the hospital. Daniel & I basically sat next to each other in stunned silence. How would our family cope? My mom had only come expecting to stay for 48 hours more or less. Daniel couldn't take another week off of work after just coming off of a week of paternity leave.

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On Thursday Grayson got an ultrasound of his kidneys (called a renal ultrasound) they also took more blood to see if the antibiotics were working. I met one of the urology residents on Thursday night. He told me that Grayson's kidneys were a little bit dilated and that he had grade 3 hydronephrosis. Eli had this also, he had grade 4 hydronephrosis and so he had a bunch of tests but didn't have reflux and had good kidney function so he has just been monitored, and he's mostly grown out of it. The urologist resident explained that it was likely that Grayson had reflux and that this was probably at least part of the cause for his urinary tract infection.

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Late Thursday night Grayson had a catheter placed in him. That was pretty much the most awful thing - for one thing because it was a surprise, for another because I don't handle stressful situations at midnight as well as I do at other times in the day. I sat on my little sleeping couch and cried right along with Grayson. It was a long night after that trying to make sure that all of Grayson's tubes and wires didn't get pulled. 

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Mommy & Grayson
On Friday I met the urologist for the first time, he was really nice. Grayson had a follow-up renal ultrasound and had his VCUG to test for kidney reflux. It took two hours to get all of the images that they needed. I didn't even try to watch the tests I just helped Grayson suck his thumb so that he wouldn't cry through the tests. As soon as the test was over the radiologist turned to me and says "he has severe kidney reflux" it was immediate, it was definitive but I was just relieved that Grayson wouldn't need more tests. At this point I would have been surprised if he did not have some reflux.

But I was not prepared for what would happen next... not at all.

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After Grayson's visit downstairs to radiology we came back to our room and got settled. The pediatrician came back to see me once he saw the results of Grayson's tests. He was even more serious than usual - he told me that Grayson has Grade 5 kidney reflux (on a scale of 1-5) he told me that the urology team would be taking over from here and that he assumed the next step would be surgery.  The urologist came later and explained the procedure he would want to do - called a vesicostomy - then he left.

I felt like I had fallen down Alice's rabbit hole to wonderland. I cried and cried and cried in that hospital room. a trip to the ER had turned into 48 hours in the hospital had turned into 5-7 days in the hospital had turned into surgery on Monday?! I could not imagine my baby having surgery at just two weeks old. I could not imagine having a son who would have a hole in his pelvis, or what would it feel like to take care of him. What would it be like to not be able to let him stay in nursery because he needs special care during diaper changes?

Later that night Daniel sent me a link to a YouTube video explaining what was wrong with Grayson. I watched that and also some video diaries from moms who had gone through something similar. They had endured multiple hospitalizations before their children got the tests Grayson had got. Suddenly my perspective changed - I realized how blessed we were that Grayson's reflux was discovered before his kidneys had a chance to be significantly damaged. 

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On Saturday it was Josiah's birthday. Grayson & I missed it but my sister Abi came to visit us.  


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On Sunday the kids came to visit Grayson in the hospital. 
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Grayson got a new IV port put in by our awesome nurse - Giselle. The pediatrician at the hospital said that Giselle could put an IV in "the toe of an ant" and not to worry about it. She was awesome and got  it in with the first try. He also got a pacifier - which made Daniel quite happy.

I got to see the scans from Grayson's VCUG and the pediatrician showed me where Grayson's ureters were enlarged. Even I could tell that they were severely enlarged. One of the pediatric residents said that he thought he was looking at bowels and not a ureter - that is how large they are. Hopefully after some time they will shrink down to normal size on their own and won't need to be surgically tapered.

We also got confirmation that Grayson's UTI was caused by e coli bacteria. I tell you what it was a crazy experience to have doctors tell you that your not yet two week old baby has e coli like it's no big deal, nothing to worry about, this happens all of the time. (craziness I tell you!) But we also got good news that the blood cultures that were taken the day before were not growing the gram negative rods that they had before - so as long as the blood culture stayed clear we would be able to leave the hospital soon, well as soon as he was clear after surgery.

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On Monday at 12am Grayson could no longer be nursed in prep for surgery - those were some rough hours for both of us. Grayson was awake crying for about  half of the night. He hated that passi by the morning.

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Daniel came in the morning. The resident urologist came and explained the procedures Grayson would be undergoing. The nurse from pediatric surgery was a friend of mine from church and it was such a comfort to have her there. They gave Grayson this sweet little hat, made by volunteers in the community. We met the anesthesiologist and another nurse and then they took Grayson back for surgery. I was thankful that Grayson wasn't old enough to be afraid or to remember that this happened but walking out of those doors without my baby in my arms was one of the worst moments of the day. I cried in Daniel's arms.  

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The surgery was over sooner than I'd hoped. Talking to the urologist after the surgery I felt like a million pounds came off of my chest it was one of the best moments of a really difficult day.

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first picture of the three of us after surgery
His surgery site looked so much worse than I thought it would. His face was so puffy. When Grayson woke up he screamed and screamed and wouldn't nurse. They gave him a little morphine and that knocked him out for almost the rest of the day. We waited and waited for him to wake up. It was awful. Daniel held Grayson & watched the news. I tried to sleep but all I could do was crawl up next to Daniel & cry. 

Finally around dinner time Grayson woke up and nursed. That was the second best moment of the day. I just smiled and cried and held Grayson while he nursed - so relieved to have my baby back.

That night the urologist came again to check on Grayson he said that everything was looking good and we should be able to leave the hospital soon, but he said I looked really tired and to try to get some sleep. So that is what we did all day Tuesday - nurse & nap. 

  
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Tuesday morning

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Grayson's crib at the hospital.


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A photo posted by faith raider (@faithrphotog) on

On Wednesday we got to come home!! I spent the rest of the week mostly just eating & sleeping. It was the most physically & emotionally exhausting thing I have been through in a very long time.

Through this whole time I have had so many people to be thankful for - my mom and Daniel's mom who both took time off of work to hold down the fort while I was gone.  To Olivia who came to visit me in the hospital several times and coordinated care for our family with so much joy & enthusiasm. To Sarah who brought me lunch!! (Because we can all agree that hospital food is so gross) For all of the ladies who brought my family meals throughout the past three weeks. For all of the texts of care, concern & encouragement. I am especially thankful for Daniel - who had the hardest role to play - he divided his time and heart between home, work and the hospital. He has picked up all of the pieces that I have dropped and has taken such good care of us.


A photo posted by faith raider (@faithrphotog) on

A photo posted by faith raider (@faithrphotog) on

A photo posted by faith raider (@faithrphotog) on

A photo posted by faith raider (@faithrphotog) on

Now we are home, and Grayson is already over 7 pounds! (Up from 5' 13" at birth and 6' 6" the day he was hospitalized) He's healing well from his surgery. I'm starting to get used to our new routine (All the diapers!! All the laundry!!)  I'm trying to look at the bright side - Grayson is already super good at taking his medicine! He barely spits up at all. We have so much to be thankful for. There are also moments I feel totally overwhelmed and exhausted but we're taking things one day at a time.

2 comments:

  1. So glad you are all home together. Grayson is so cute!

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  2. Oh, he's such a cutie! That was quite an adventurous way to start off your life, hey? Glad you're all home now and get settled in that new routine! Lots of supernatural strength and blessings in this new phase of life!

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