Showing posts with label kidney. Show all posts
Showing posts with label kidney. Show all posts

Sunday, December 21, 2014

a fresh start.

[originally posted on 4/10/15]
being back home with prim and jon felt like a fresh new start although i was still not back to my old self. days when jon was home were typically okay. it was the days he went to school that were rough.
got her dressed by myself for the first time! her grandpa wasn't here to help.
here i am kind of a wild mess. this was two days after coming home and things were not going great. i was in so much pain and had so much going on her first two weeks that either i didn't notice my hormones going crazy or they waited to go crazy when my body started healing. i cried all day every day. jon would walk in on me holding or feeding prim and crying and crying. he'd have to drag me off the sofa to get some fresh air and gave me repeated pep talks. only a few short days of this and he dragged me to my OB to tell her what was going on and i got on zoloft pretty quick.
this is how many pills i was taking nightly and was also a source for my tears.
we got home on monday and on thursday jon decided he needed to go back to school and take finals. i was alone with prim for the first time!
i vacuumed while she napped!
took pictures of her with my flowers my MIL sent me.
and oogled over the darling. she threw up so many times and i didn't know until jon got home that i was using the wrong nipples and she was getting too much too fast. so sad!
my girlfriends from pure posh came to see me, my first real visitors! they were so kind and excited about the baby. i needed visitors so badly, i was very happy they came over.
kathy told us she used to bathe her babies like this, holding their head and letting them suck on her finger. we tried it with prim and she LOVED IT. she is such a water baby. she'd just float around and kick her little legs.
part of the reason for all my tears was accepting that i couldn't breastfeed. there's no way i could have known that this news would have hit me this hard. jon was beyond supportive and encouraged me to get skin to skin with prim. i was still sleeping and laying around a lot and didn't have any energy. jon had to get up with her every night and after a short while of holding her i had to pass her off. when i would hold and feed her i would just cry. i'd listen to jon holding prim in the other room while i laid in bed and he'd read her poems, sing to her and talk to her. when i held her i just looked. for a couple weeks he'd gently encourage me to speak to her so that she could hear my voice. i felt like such a failure for a mother. after i stopped breast feeding i felt like i was replaceable as a mom. it didn't seem like prim needed ME, but that anyone could watch and feed her. i didn't know how to get up with her in the night, give her the right bottles or even talk to her. 
my little baby with jon. though this was all horrible, many blessings came out of it. it didn't take jon long at all to jump into the dad role because he was shoved into it. he knew how to take care of her 100% and he is so good with her.
poor baby's scar from her IV.
i had doctors appointment after doctors appointment. one almost every day. i'd wake up in the night dreaming that a nurse was standing over me ready to draw my blood or give me medicine. i'd out of the blue start crying missing the nurses who were so kind to me and sad for myself about how everything happened. it didn't feel like all of it had happened to me, but to someone else that i felt so sorry for.
jon was always trying to get me to smile. i don't know how he stayed so positive through all of this-it probably scared him to see me in such a terrible state.
maybe this is why. our angel baby.
at her three week appointment prim was up to 9 pounds! this would have NEVER happened if we hadn't decided to formula feed her. i tried to remind myself of this every time i started to get sad. my baby was gaining weight and had a much better disposition about her. 
when jon would go to school i'd either sit downstairs with my father in law or jon would tell them to come up and sit with me. one night john and kathy both walked in while i was feeding prim and crying. neither of them mentioned my tears but just started talking to me and before i knew it hours had gone by and jon was home. i will never forget how much they helped me during all of this.
sweet brittany sent me a get well package/congratulations!!  it cheered me up so much to know that someone so far away was thinking of me and my baby. she (unfortunately) understands a not very fun delivery experience and was very encouraging to me. 
trimming prim's nails for the first time! katie told me to wait two weeks so that i didn't hurt her, but i actually waited over three weeks because of everything. i loved when she fell asleep on me like this!
morning snuggles with daddy.
this is about the time i started to feel a bit better. the zoloft was helping, i was feeling better every day, and jon's pep talks were sinking in. 
addie's friend lauren was so kind and brought us dinner and presents. she has three kids and a LOT going on, but she still took the time to help us out and come visit. 
amanda flew into town that evening and it could not have come at a better time. jon and i were taking prim on lots of walks and i was getting stronger every day. i started talking and singing to our little baby and getting more comfortable taking care of her by myself. i remember one time i was feeding her and crying my eyes out. i looked down into her eyes and it was like looking into a mirror. she had MY eyes, she was MY baby. i am her mommy and no one can replace me, no matter how i choose to feed her. it was a spiritual experience that i needed. 
it is hard for me to write about this because i didn't want it to be this sad and hard to transition into motherhood, but i need to remember what it was like and the support i got from my family and friends. i'm so blessed to have jon's family here to support us and offer help at all times of the day, friends who are close and are new who took the time to make sure we were taken care of, a tiny beautiful baby who i can and do stare at day in and day out, and of course jon who was scared out of his mind to see me so sick and sad but never showed it. i'm so glad i picked him and he picked me.

Saturday, December 20, 2014

life was never worse, but never better..

[originally posted on 3/24/15]
i was admitted to north central baptist hospital at about 4:30pm monday november 24, 9 days after having my baby. they weren't sure where to put me, so i was placed in the postpartum recovery ward. they informed me that i was a patient and jon and prim could sleep in the room with me, but prim wasn't a patient and they wouldn't be able to help us out with her. that was okay with me, and they were still so nice about her being there.
(secret: they still brought us diapers and wipes which we were BEYOND grateful for!)
my dad and jon were here with me as i got checked in. it wasn't fun being back in the hospital, but i was just grateful to be watched over. like i said, the night before this was by far the worst night of my life and i was not about to go through that again without nurses nearby. late that night, long after my dad had gone home, a doctor from postpartum came in to let us know what was going on. they did blood work and let us know that there was an issue with my kidneys which they thought was an infection. he passed my case off to the hospitalist, dr. uzowulu-a very honest doctor from africa. it was pretty scary the night they came in to tell me i was having kidney failure. they didn't have any other answers and could only say that things were really not looking good. i remember watching jon struggle with Prim that night and thinking "what are we going to do? this would all be so much easier without her." 
Tuesday:
they'd come in my room every morning around 5am to draw my blood and i hated it.
while i was home from the hospital (in between visits), my kidneys and whole body hurt so bad that i couldn't take deep breaths. when i would try to catch my breath my body would shake in pain, so i just stuck with shallow breathing. this handy contraption was used by both my father and my father in law when they had open heart surgery. it was a nightmare to get them to blow into it because it was expanding their wired together rib cage and causing them a lot of pain. so when the nurse brought this in i wanted to throw it out the window. of course my rib cage hadn't been broken open, but it still hurt pretty bad to blow into it.
this was the view from my bed in the postpartum ward. jon and the baby slept on the pull out bed way too far away from me. i remember asking one of the nurses what she thought about my husband sleeping with our baby. she said that when people give birth and the baby is a patient they don't allow co-sleeping, but since prim wasn't a patient they really couldn't do anything about it.
this day prim had her appointment at the pediatrician so my dad and jon's dad took her to the appointment. john was wearing a suit because he was working at the temple that evening. while they were gone one of the front desk nurses came into my room to let me know i had a visitor who was wearing a suit. i asked if he had a baby and she said no. i asked if he was with another man and she said no. i just figured it was john, so i told her to let him in. my jon was asleep in the sofa, the lights were all off, and i was topless in my bed with the sheet tucked under my armpits (NO shame at this point) and in walked the elders quorum president. gahh!
when our dads got back from the appointment, they told us that prim had lost even more weight. she was born 8lbs 4oz and at this appointment, 10 days old, she was 7lbs 2oz (i think). it is normal for babies to lose weight in their first couple weeks, but this amount of weight was getting dangerous. john is not a man of very many words and he has never told me what to do. when they got back from the appointment he looked me in the eyes and told me that prim was losing too much weight and this could start affecting her development. he said "this is the last i'm going to speak of this, but in my opinion you need to start supplementing with formula."
at some point this day a guy came in a did a renal sonogram. it was uncomfortable because he had to push the little thing all over my abdomen and kidneys. everything came out normal.
here's prim with her grandma kathy. i was actually standing up for this-her first tummy time experience! she was so cute and didn't cry too much. that night we started to supplement prim's breastfeeding with little amounts of formula. kathy stayed late until john came around 11. she went home and he stayed to help with prim for a few hours into the morning so that jonathan could sleep.
Wednesday:
emotionally, this was the worst day for me. i was 11 days postpartum at this point, and my milk still hadn't come in. i would feed prim as often as possible, pump when she wasn't feeding (when and if i was even up to it) and getting help from the lactation consultants at the hospital. one of the consultants was particularly helpful, her name was tammy. she held my red-in-the-face baby up to my breast and tried to coax her into latching on and didn't judge me when i told her prim looked like a little devil. at this point i was using a nipple shield and trying to entice the baby with gas drops and formula. prim was just screaming bloody murder and while tammy held her up to me, i could see the look in her eyes. she didn't know what else to do, and neither did i. when she left she told me she would come back with a plan for us. while she was gone dr. uzowulu came in to visit with me. this was day 3 in the hospital and there had been no improvements. my numbers were getting worse and my kidneys were losing more function. he stood at the end of the bed and looked at me, looked at my screaming child, then told me i had to stop breastfeeding. he knew that prim was losing weight and knew better than anyone that i was not getting any better. the moment he said this i started to cry, jon started to cry and my dad started to cry. i wanted this so badly. for 9 months i dreamed about breastfeeding my infant, giving her the best thing i could and bonding over the skin to skin contact. he told me that because i was dehydrated and malnourished, prim was not getting any nutrients. my body was trying so hard to provide milk for my baby that it was neglecting the rest of the problems and that is why things continued to get worse. tammy came in with a stack of papers and a plan for my breastfeeding right at the tail end of dr. uzowulu's discussion about quitting. it was poor timing... one of my other favorite nurses, sarah, was in the room with us as well. after the doctor left i just cried and cried. i told her that i was going to start giving prim formula and she said she supported my decision. she said i knew what was best for my child and that if she was in my position, she would do the same thing. 
here is jon giving primmy her first bottle. she latched on with no problem and downed it in no time.
my poor starving baby was so relieved to be getting a full meal. it was very bitter sweet in this moment. i was grateful for jon for supporting my decision and helping me with the baby. he and my dad were very positive about giving her formula although they were sad about how sad i was with the disappointment of quitting breastfeeding. seeing her happy after eating was the consolation i needed.
this is the outfit we brought to the hospital when she was born. if she was a boy she would have gone home in this!
lounging around in the hospital room. there wasn't much to do besides wait around for news from the doctors. (at this point about 5 doctors were on my case-an infectious diseases character, kidney specialist, my OBGYN, the hospitalist, and a couple other randoms)
wednesday i had to drink two full bottles of this gross and weird soda in two hours and couldn't eat or drink anything else. once finished, i had to go get some sort of scan-i think it was an MRI.
wednesday night the doctors decided that postpartum was not the place for me. they wanted me to move up to the PCU (progressive care unit-a step below the ICU) so that i could be monitored more closely. in this picture you can see how swollen i was. the first few days i was in the hospital they put these wraps around my legs that would fill up with air every few minutes to keep the circulation going and prevent blood clots. it made this airy noise that sounded exactly like prim waking up. at this point i was so exhausted and stressed out by breastfeeding and being sick that i would dread the moment prim started to wake up. while we were home in between hospital visits i remember jon and i joking about it, when she'd start to wake up we'd look at each other and say "She smells fear." after a couple days of waking up to that sound i asked the nurses if i could take them off and they said yes.
here we are all settled into the PCU. when i got in the bed they took my weight (pretty cool!), i was 145 pounds. they gave me oxygen and put the heart rate monitor on my finger and sticky things all over my chest. the first night there the nurse gave me ambian to "help me sleep through the night".
Thursday, Thanksgiving:
my sweet baby.
jon's grandpa and grandma came to visit me in the hospital on thanksgiving! i barely remember this. grandma brought me a stuffed bunny that used to be hers and roses; it was a really nice surprise, they don't get out much.
thursday was definitely the worst day of the whole hospital stay. i got a transvaginal ultrasound in the morning (tmi but it was the worst) because they were worried about retained placenta and they found "products of conception". then early in the afternoon i got a gallbladder ultrasound and things were normal for the most part.
here i am with doctor simpson, the lady who delivered primrose!
soon after this photo was taken i went down to get a CT scan. they didn't let me eat or drink before hand and i couldn't get over how thirsty i was. i laid on the hard table for about an hour. i don't really remember this, i was in and out of sleep and was pretty confused. the ambien from the night before still hadn't worn off. as soon as it was over i asked the guy performing it if i could have some water. he gave me a bottle of water but told me i shouldn't drink very much of it and i still couldn't eat because they were sending me directly to the OR for a D&C. during the CT scan Dr. Simpson came in to talk to Jon about the D&C. i was really upset about this, but it was mostly because of how hungry i was-i was pretty out of it. it was thanksgiving and the OR was totally empty except for a few nurses who came in just to help with the procedure; a nurse, a tech and an anesthesiologist. i remember i was shaking really bad and they kept asking me if i was okay. i told them i was okay, just scared. they asked me if i was allergic to anything and when i said no, they strapped my arms down and put medicine in my IV and i was out. while i was getting the procedure, jon was in the empty waiting room watching football. my dad and my father in law brought him down thanksgiving dinner that john and kathy brought from home. it was about 8pm. as soon as i came to i asked about my dad over and over and i was crying. they said he was okay and asked my i was worried and i told them "his wife died in a hospital." certainly they thought i was crazy.
i made sure my family brought ms. prim her deer outfit and her turkey socks for thanksgiving! here i am trying to hold her after the procedure-this was at about 10pm.
i got a blood transfusion after the D&C to make up to the blood i lost during birth. somehow i was smiling and standing-this was after midnight.
friday:
my dad came at about 10am every morning and dressed primrose.
before i had her i went through all of the boy and girl clothes my sister gave me and pulled out everything i thought was gender neutral. turns out 'gender neutral' is actually just boy clothes. she looked like a little boy the whole time i was in the hospital. 
friday was pretty uneventful. i spent the sleepy day recovering from the procedure from the night before, trying to eat and standing up long enough to give primmy a bath!
dr. uzowulu came in and caught me in a rare moment of holding prim on my lap. i was burping her so my hand was under her chin on her chest and her head was resting on my hand. he told me i was choking her and i couldn't hold her like that. he then asked me if this was my first child. if i wasn't so tired, i would have been very offended by this. he looked at me then looked at jon and said, "she looks horrible. why is she so tired?" when jon told him that the nurses had given me an ambien on wednesday AND thursday night, he got really upset. i can't imagine what he said to those nurses. in this same conversation he told jon and i that we really needed to send prim home with our parents-that having her here was not helping anybody. at this point she was 13 days old.
friday night i got another blood transfusion. this was to make up for the blood lost during the d&c.
Saturday:
i was starting to feel a little bit better by saturday. the ambien had totally worn off, i'd started walking outside with my dad and jon and i was eating more.
this angel cared for prim all night every night all by himself.
looking like a girl!
tammy, the lactation consultant, brought me that little giraffe for prim. she was so kind.
we spent most of the day sleeping and being drowsy when awake. i remember saying to my dad "i just can't believe she's already a week old." he was quiet for a minute and softly said "two weeks old."
me and googly eyes about to get a bath! on my bed you can see the ensure (they brought me one for breakfast lunch and dinner and i tried to choke them down-it was the only thing i really ate) and the piece of bread with my one bite taken out of it.
on saturday dr uzowulu came in to let us know my numbers were all mostly improving: things were looking up! he told us again that we needed to send prim home with my in laws. my dad told him that he was the bearer of bad news and he replied that he is saying what the other nurses and doctors are thinking but won't say. he left and came back about five minutes later to say that he wouldn't bring it up again. we decided that he was probably right, jon could use a full nights sleep and so could i. we sent primmy home with john and kathy and it was the hardest thing ever. 
sunday:
at about 830am the nurse left my room so i got up to put my robe on. i heard a knock on the door and i thought it was her again so i yelled "come in". my back was to the door. i was wearing the weird hospital underwear and didn't have anything else on. out of the corner of my eye i saw my kidney doctor who is about 40 come in, look at me then turn around and linger by the door. another embarrassing moment. when i got all covered up i invited him in and woke jon up. the first thing he said was "wow, you're making rounds early." the doctor was quiet and i said to jon, its almost 9am. way funny.
my dad brought our baby back at about 10am on sunday and we were so happy to see her!! 
sunday was another day we spent lying around and sleeping. the doctors all had good news for me, my numbers were getting better and it was looking like i could head home the next day. we sent the baby home with john and kathy for a second night in a row.
monday:
they thought i was well enough to head home! dr. simpson discussed with me that nothing was unusual with my d&c. i started to improve after that procedure, but she believes that thursday would have been my turning point regardless.
here we are coming back from the hospital the second time but what felt like the first. 
it totally freaked me out to be home, i didn't feel well at all and didn't think i was ready to be out of doctor and nurses supervision. i slept all day while my dad and jon dealt with this:
vomit!
utah baby.
i didn't really write about how i hadn't been eating during the week. the doctors kept telling me that eating was the only way i was going to get better. i really, really tried but it was just not enticing to me at all. it was almost painful to eat. one of my favorite nurses was in there when my dad, jon and his parents were scolding me for not eating. later she told me that she agreed with them, thats how i was going to get better, but she wouldn't push me. i got weighed soon after i left the hospital (at one of the million follow up dr's appointments) and i was 120lbs. i'd lost 25 pounds in less than a week.
headband from lyndsi!
my dad finally left on tuesday, a full week after he was supposed to go home. he delayed his flight by a couple days and the night before he was going to go home i called him to ask if he'd delay it again. he did and stayed until i got sent home. i'm so grateful he was there to help us with the baby. it was such a scary experience and although i was happy jon and his family was there for me, i was happy my own dad was too. he kept the rest of my family in the loop while i was boycotting my cellphone. my sisters would call and he'd hold the phone up to me even though i'd whine and tell him over and over i didn't want to talk to them. i didn't want to talk to anybody, i just wanted to sleep and not be in pain. i'm grateful he made me talk to them because they were all so encouraging and made me feel a lot less alone.
here are jon and prim after dropping my dad off at the airport. it was just the three of us for the first time since she was born, we were getting healthy and ready to start over.
the whole experience was nothing short of horrible. i told amanda soon after i got home that i wouldn't wish that on my worst enemy. things could have been much, much worse. but "even if somebody else has it much worse, that doesn't really change the fact that you have what you have." (POBAW)

My official discharge diagnosis was:
1. Acute renal insufficiency
2. Pyelonephritis
3. Proteinuria
4. Anemia
5. Malnutrition
6. Cholestasis