Tuesday, October 17, 2017

1 month.

Is our sweet Rem really one month old already?! This is going way too fast. I feel like I really missed like a week and a half of her little life because of all the stuff that was going on with Hadley when we first got home...
(coming home from the hospital)
She already seems so much bigger from when we brought her home.
Little Rem is such a good baby. We all can't get enough of her. I am constantly telling Hads & Beck to 'leave her alone,' 'just quit touching her,' 'move away from her face please,' etc! Hadley is over the moon about having a sister and is so sweet with her and Beck is always saying how pretty or sweet she is. Hadley is a great helper- beck tries :) hah When he is finished holding her you better be near or Rem will end up on the floor! But, he makes up for it by always kissing her on her head or 'petting' her hair while I'm holding her. He will then say "She's so cute" :)  Now that hads is in school- beck has taken to Rem for entertainment. 
She is a pretty decent sleeper- She has a bottle at 730/8ish then we keep her away until about 9/930 then let her fall asleep- at 1030ish we wake her up, put her in her jammies and feed her one last time. She will then sleep until typically 4/430- but there have been a couple times she slept until 630! I, however, did not because I kept checking on her like every 30min-1hr. She is hit or miss about going back down after the middle of the night feeding- most of the time she does, but there have been a few nights she has struggled. Overall- I'll take it! :)
She has the best hair. It is so long and dark- I'm really hoping it stays!! She loves when you wash it- but I must admit, I don't do it very often- oopsi whoopsi 
She is already pretty good at her tummy time! She doesn't like do it for very long- but she gets a good amount of practice in while she's down there!
I can't get over her cute little features and her sweet baby smell- I can't get enough of her. 
stop growing so fast! If it wasn't for the sleep deprivation- I'd want this phase to last much longer. I just adore how snuggly and sweet she is. 
We are all obsessed. We love you Rem!

Friday, October 6, 2017

osteomyelitis & bacterium.

What started as an amazing week with the birth of Rem, ended up being a week and a half of scary times for us with Hadley. 

The Thursday I was still in the hospital- Brock called saying hads had been up all night screaming about her knee...then continued complaining about it all day. The next night and day- the same thing. We chalked it up to growing pains and gave her some motrin. When I got home on Saturday and saw how she was acting while asleep- Brock and I knew something else was wrong. It would wake her up out of a dead sleep- she would scream out in pain. He took her up to the ER that night and they examined it, did an Xray and said to ice/heat it and watch it for a few days. The next day, Sunday, hadley spiked a fever and I said that's it- take her back in. Brock took her back up to the ER and they ran blood work and a bunch of other tests. The doctor there was concerned about a few things it could possibly be and advised us to go to Primary Children's the next morning first thing. 
The next morning, Brock took her in- they ran a bunch of blood work and tests and said they wanted to do an MRI that afternoon. I went and switched spots with him at this point. They wanted to sedate hads for the MRI because they said kids can't hold still long enough/are scared of the machine/noises. We try to avoid medication if at all possible so I talked with hads about MRI's and what they do and why she needed to hold still during it - a few hours later they started wheeling her back for it. I insisted they try it first without sedation. My girl did it! They were shocked. 45minutes worth of MRI's and she rocked it.
The doctor came in a few hours later and told us that she had an infection in her femur, right above her knee -- exactly where she had been saying it hurt. This is called osteomyelitis. They said it was completely fixable and that we caught it early. They admitted her to the hospital and said she needed some IV antibiotics for a few days but then we would have our Hadley back. Scary- but fixable. Little did we know it wouldn't be that easy.
Brock and I switched places again- and he planned to stay there for 2ish days until they had it under control, while I stayed home with Rem & Beckam. The next morning she seemed good- even was up walking around for the first time in awhile without screaming. Some friends and family visited and we felt like we were on the up and up. 
Next thing I know, I get a frantic call from brock that afternoon that her knee had tripled in size- was extremely hot to the touch- red, inflamed, and hads was screaming in pain. The doctors were puzzled- the ortho team came in and said they were afraid it had moved into her joint- which you don't want because bones can be ok, but if the infection damages the cartilage it can permanently damage your knee. They wanted to do a needle biopsy test to extract fluid from her knee and test it- because if it came back positive they would need to quickly go in and clean out the infection from her knee. The problem with this was- the sedation team was on another emergency case but the ortho team felt like it was something they needed to do right then in order to possibly protect her knee- so...they drugged her up the best they could, and Brock and a few other guys held her down while they did the needle test.......twice. It was excruciating. The sound in Brock's voice when he called me will forever haunt me- he was traumatized. I am so grateful for him being there and being stronger than I could've been in that situation. They did not get very much fluid..which shocked everyone.
The tests came back that she did not have the infection in the joint- good news, but didn't give us an answer. We thought that maybe it was because they couldn't get a good amount of fluid because of the situation they were trying to do it in. That night was tough. They had hadley on morphine and some other pain meds trying to keep her comfortable. Her knee looked horrific. 
Thursday: This morning panic set in again as her blood levels they were watching tripled over night- which meant the bacteria was out of control. The head ortho surgeon, that we had not met yet, was not convinced that it wasn't in her joint and ordered another needle test and said she thought she needed to go in and clean out her knee to be safe.
 This time under sedation though.

I rushed up to the hospital to be there. This day was a roller coaster. My hormonal self was a mess. They didn't really know what was wrong with my girl, she was writhing in pain, and of course I was thinking the worst. I just wanted answers- or at least start ruling out the really scary ones. They gave our hadders some ketamine and performed the needle test. This time she didn't feel or remember a thing- they got out a TON of fluid from her knee. A few hours later they came in and said the head ortho surgeon was coming in at 4 and wanted to go in and clean out hadley's knee. The test didn't show infection specifically but enough of the markers of infection were there that she felt it was necessary. Hadley's knee was huge, swollen, now had cellulitis, extremely hot to the touch, and was hurting her so much. So...Brock and Pops gave hads a blessing and we prayed for the best. Brock and I were trying so hard to be strong around Hadley, but we were breaking down inside. Scared. They also switched her to an antibiotic that covered a few more 'bugs' that were pretty bad ones, as a precaution....

The surgeon wanted to get one more set of MRI's to compare them to the originals but they didn't want to sedate hads twice in one day and feared with all the pain she was having that she couldn't hold still during it- Well, they don't know my hadley. After some convincing from me that she could do it, she went right in and did exactly what they needed. We met with the surgeon after the MRI's and I loved her. She was the kind of personality I needed to see in that situation- She seemed confident and calm. She said- I think the infection is not only in her femur but also in one other spot on the side of her knee, and her patella- and that she had never seen it there before. She explained that this could be the reason that her levels had gone up- that maybe the infection had spread but not enough to show up on the first MRI - so we thought we caught it early, but really we caught it just before it reared its ugly head. She seemed confident that this was still osteomyelitis and that it was treatable. We needed to hear this. 
They wheeled hadley back and said it would take about an hour.
(I can not thank Margot & Tyson for coming up and sitting with Brock and me during this time- they provided a shoulder I needed, an XTRA LARGE coke, and some comedic relief to distract us.)
The surgeon came out and said everything went well. She cut open hadley's knee and cleaned it out and then flushed it out with fluid. She said the inflammation and amount of blood was a ton- she didn't see any pus which as good and bad. Good in the sense that that meant there wasn't infection in the joint space, bad because she kinda wanted to see it so she could get the "bug" and we would know what we were dealing with. She then poked holes in her patella- again wanting and not wanting to find pus- for the same reason as above. But- it also provided for a way for the antibiotics to more easily get into the bone. She said hads should feel better just because of all the gunk she was able to clean out of her knee- it would relieve a lot of the pressure. The surgeon did warn us that her blood levels will remain elevated, and possible increase the levels we were watching, due to the surgery for the next 24-48hrs. Not what we wanted to hear- as we wanted to see them come down to get assurance our treatment plan was working. Hads woke up just fine from the surgery and then slept through the night. First time in awhile.
Friday: The next morning, her numbers were slightly elevated- which we expected, and the surgeon wasn't concerned and said to possibly expect the same thing to happen tomorrow but that it was good that it didn't triple or anything again. She said by Sunday for sure she wanted to see them start trending down. She said Hads should walk a bit but that it would probably be painful- our Hadders hopped right up and wobbled around. The fact she was able to do this the day after surgery was shocking to everyone- but just showed us how much pain she had been in, if it felt better after a surgery! I loved seeing my girl smiling- for the first time in DAYS- she seemed more like herself. Brock and I needed this. We wheeled her around outside to get some fresh air- then she walked for a bit- all in all it was a great day for all of our souls after the roller coaster we had been on for a week. 
 Saturday: The next morning there was no real news- her Levels went down .1 so there was no real improvement there- but they didn't go up either! She was in pain again and a little sick- but nothing too crazy- this was most likely due to all the medications being pumped into her little body for a week now and that she was really active the day before. Then a few hours later they came in and said they ended up growing the 'bug' from her bloodwork from a few days before. Good and bad news. Good in that they now knew the bug they were needing to fight- bad in that they found it in her blood after having been on antibiotics for several days. And again.... we got scared. They wanted to redraw her blood and make sure the antibiotics were taking care of the bug- but that it would be 48hours before they would know for sure. Also, they wanted to take her off of the antibiotic she was on and put her back on the first one- this scared us because it our mind it didn't work- that's when her knee got worse- but they assured us that it was the right antibiotic and they had tested it on the cultures they had grown in the lab of that specific 'bug'. 
The ortho dr was able to check her knee and move it a bit without hadley screaming. She didn't think she would need to repeat the surgery as of then- which was good. Hads was in good spirits as well- so that was a relief. The doctors didn't seem too concerned that her levels stayed the same- because they didn't go up- they did however want to see them go down the next day. Everyone (the Ortho team, ID team, and the regular doctors) finally seemed confident in the treatment plan. We were just excited that it was the first day she didn't need the narcotic pain medicine! To us- that meant we were improving. The other hiccup we kept having was that hadley had been on IV's all week as well as daily blood draws- so her small little veins were shot. The poor girl didn't have another one left. Every time- it was a struggle and terrifying for hads. They tried giving her some relaxation medication to put in new IV's because it would take several sticks due to the veins collapsing etc but she just would scream every time they walked in the door. Blood draws she was ok with- but IV's were torture. After them trying for 30min to get a successful IV, and hadley screaming- they left and she passed out asleep. Brock then put heating pads on her arms to try and bring the veins to the surface- called in the IV team again- and using ultrasound, they were able to find a vein and put in the IV right before hads woke up! Success!! 
Monday: I always got a call from brock around 6 every morning with the results of the blood work from the 4am blood draw- this next morning I couldn't wait for his call. Today- her level went down 2 whole points and the blood culture was still clear! Amazing news. They took out her IV and switched her to the oral antibiotics. 
One week in the hospital and Hadley was finally discharged that afternoon. 
We have several follow up appointments and to monitor her knee after surgery and her blood work to make sure her levels are continuing to go down. She will be on the antibiotics 3x per day for the next 4-6weeks. As of her appt on Thursday (3 days after leaving the hospital) they had gone down again! 
We will be forever grateful for all the doctors who helped our hadley during this time. We are so grateful it was something fixable and they were able to catch it in enough time to treat it most efficiently. Sweet friends and family who visited hadley and brought or sent her sweet treats to cheer her up- food and support to brock- and visits to me as well as watching my other two littles so that I could go up during the day and be with Hadley. It is the worst thing to watch your child be in pain, hooked up to all kinds of wires and machines, and you not be able to do anything about it- and no one can give you a definitive answer. 
I am forever grateful that all my babies are now under my roof. It was a crazy week and a half- but she is on the up and up and my heart is full. 
love my hadley.