We’ve never been under such duress and made it through so smoothly despite everything. The prayers that have been said for us have literally carried us up and over the last few months of craziness. Here’s the rest of the story, leaving off from the last post. (*NOTE* This post is about 16 pages, single-spaced, in a regular document, not including all the pictures and captions. I will NOT be offended if you do not read it. This is just for those who want to know about everything!) As another side note, this literally took three days to complete while I sat quarantined in my room from the stomach flu.
The Breakdown in a calendar sort of way so you can how insane it’s been:
July 30th- Gave birth to the babies
(The rest of these stats will be the “week of,” starting on Sundays)
Aug 3 – NICU; family has stomach flu – Nat stuck at hospital; family then gets colds – Nat still stuck at hospital
Aug 10 – NICU; school starts for girls
Aug 17 – Home with the babies, two days apart from each other; Graham on 19th, Calvin on 21st
Aug 24 – ER Visit, go home, Ped visit, readmitted to UVRMC for four days, discovered Graham’s allergies, bad cold for Nat
Aug 31 – Discover Calvin’s allergies; readmit to UVRMC for repeat GBS with Graham; laryngitis for Nat
Sep 7 – Graham returns home from UVRMC; Home Health for PICC line antibiotic treatment
Sep 14 – Boys’ circumcisions; Cal in urgent care because of excessive bleeding; nearly admitted to Primary Children’s
Sep 21 – Blood tests for Calvin to eliminate hemophilia; Nat smashes finger; meet with Dr. O. to follow-up with Graham
Sep 28 – Twins’ Baby Blessings; part of family in isolation because of stomach flu; wedding cake; PICC line removed
Oct 5 – Midnight cultures at UVRMC, Graham readmitted to Primary Children’s on Tuesday morning, released on Friday
Oct 12 – Reg pediatric visit, shots for twins; croup for Elli; stomach flu for Nat
Oct 19 – Meet with Dr. O. to follow-up with Graham again; maybe we’ll finally get to the Pumpkin Patch!
And all the rest as follows:
We came home from Graham’s first hospital stay at Utah Valley. We continued with the Neocate formula and he did really, really well on it. He was the happiest he had ever been. I hardly heard a complaint from the little guy. He was starting to fall asleep on his own and didn’t give us any troubles. He was seriously one of the most perfect little babies you ever saw. Calvin’s personality was starting to come out. He is seriously an incredibly sweet baby, but we could tell he was struggling on breast milk, so during the first admit for Graham, we stuck him on Alimentum formula, as well. It did NOT go well. We tried to get him to continue eating it, as we could not afford the Neocate, but it got to the point one day that he would not eat at all. We eventually switched him to a goat’s milk formula concoction until we could figure out the Neocate situation with our insurance. (They have now denied our claim twice; we are working on it again, this time with a G.I. doc.)
Less than a week after Graham came home, he woke up in the middle of the night, out of a dead sleep, screaming. It was early Thursday morning around 1AM. He had eaten about an hour previously, so I just tried to cuddle him back to sleep. Every time he moved or was jostled, he began this painful, woeful cry. I held him in my arms throughout the next few hours, trying to feed him with no luck. You could tell it hurt to swallow. We gave him a suppository, because we noticed it had been two days since he had had a BM. He ended up having a really strange-looking diaper. I called the AF NICU and got one of my sweet nurses, Sheri. (She was there during my delivery and handed Calvin to me.) I told her what was up and asked her (as a friend, not as a medical professional) what she would do. After two phone calls to her and more hours of trying to get through the night with Graham, she suggested calling the pediatrician-on-call. At this point, we’d already been proven wrong on the GBS train, so we thought maybe something else was wrong. The pediatrician, Dr. Rowan, another doc we had worked with in the NICU, contacted us after a page. I told him what was up and he told me that he really felt we needed to take Graham in again. I started with the tears and he empathetically said, “I know you’ve been through a lot with these little guys. They sure are going to owe you one day!”
Dovy and I tearfully packed Graham up into the Nissan. Dovy decided to do the whole E.R. thing and get Graham over to the hospital while I got kids off to school. I would join him with Calvin and Lincoln once the girls were off. Dovy’s side: Graham had blood draws taken and an IV was inserted. Graham still would not eat and kept screaming almost the whole time they were there.
I got the kids all ready and sent them off to school. I took Cal and Link, picked up some breakfast, and met Dovy back on the hospital floor. We had a new hospitalist (a doc that actually works on the pediatric floor) this time: Dr. Steinfeldt. No offense to any of our docs, but they were all kind of bored with our case. (I get it; they have all kinds of stuff like this all the time that amounts to nothing.) They insisted that Graham was just a colicky baby. I insisted that Graham was not like this at all when he was healthy. They checked Graham’s diaper for blood but it looked fine (meaning the Neocate was working). I was supposed to meet with Dr. Osguthorpe (the Infectious Diseases – ID – Doc) that afternoon, as a follow-up from the previous week’s admit. (I will call him “Dr. O.” from now on.) I called and let them know we were readmitted. He actually came by my hospital room and said that he was sure Graham’s cultures would come back negative. The little guy didn’t have a fever and GBS babies ALWAYS have fevers. He also suggested that Graham just had colic. I tried to explain that Graham hadn’t been like this at all once he was on the Neocate and feeling better and that this whole thing was super sudden. I didn’t like it and it didn’t feel right. No one had answers, so they decided to send me home. An hour after Dr. O. left, they pulled out Graham’s IV. They were getting ready to discharge us. Ten minutes later, my nurse walked in with a solemn face. “I’m really sorry. You’re not going anywhere. He is gram-positive again.” I knew by now that this meant “gram-positive cocci in chains” which is the family of bacteria that Group B Strep is a part of. I prayed it was a contaminant again, but deep-down, I knew it wasn’t.
They took Graham to a treatment room to put in another IV. (Oh, the agony – they had JUST taken it out!) Graham is a VERY difficult stick (meaning it’s really hard to get access to his veins). I warned them about it and all of the nurses told me that we should be positive and hopefully be done in a few minutes. (I wanted to believe them – I really did! I was just giving them a little warning.) I went to the Parent Sleep Room to rest, but ended up calling Dovy and telling him what was going on. Two hours, four nurses, a doctor, and an ultrasound later, they FINALLY were able to gain access to a vein. Dr. Steinfeldt was quite lively at that point. The nurses gathered around me. It’s really neat to see them support the parents in their times of need. Only 1 in 4,000 babies gets late-onset GBS. (Yay – we broke that record with both twins getting it.) 1-6% of those babies gets it one other time. And here we were, another statistic. As Graham was being stretched out on the table to get his new IV, the doc noticed this swelled, red portion of his neck, right under his ear. They asked me if I’d noticed it. I hadn’t. (Babies don’t really have necks, in case you haven’t noticed, and if he hadn’t been stretched out that long, we never would have seen it.) The doc ordered a CT scan right away. Babies who have repeat GBS infections often have a focal point of some sort. Dr. Steinfeldt was sure we’d found something there, so as soon as the IV was in, and more blood was drawn, we were sent down for a CT scan. I sang to Graham and held him as I waited for Dovy to arrive. Graham was only able to eat a little bit at this point and had become a really sickly pale color.
We waited anxiously as they took Graham in to take a CT of his neck and part of his brain. The scan came back negative for any abscesses, but showed that his skin and lymph nodes were all inflamed around that part of his neck. This still did not show a definite GBS focal point candidate. I slept in the Parent Room, Dovy went home, and they put G on antibiotics. By the next morning, his cultures showed a definite repeat infection of Group B Strep. (We always have to wait for the cultures to come back positive to know for absolutely sure. The “gram positive cocci in chains” is a precursor and they always have to wait for the bacteria to culture and show an absolute GBS positive.) Each new doctor has dubbed him as “Graham-Positive,” thinking they came up with a clever new nickname. Bless their hearts. It’s unfortunate that Graham ended up being the one that is consistently “gram-positive.” It’s almost an unfortunate name. haha (Also, I had just gotten over my laryngitis and was working on getting a more normal voice. So annoying – I still had a cough.)
Anyway, Dr. O. came by early in the morning and sat with me. He told me that my case reminded him of something he had learned in med school long ago: that grandma will not know, aunt will not know, but mom (and dad, in this case) will know when something is definitely wrong with their baby. He said, “Basically, you knew what GBS looked like on your baby better than the Infectious Diseases doctor did! I was a little bored yesterday when I met with you. That’s good; you want the Infectious Diseases doctor bored. But I’m very interested now.” We continued to talk about the possibilities of why Graham had a repeat infection. He said he sees about 1-2 cases a year of repeat GBS. (Hey, he’s the ID doc; that happens.) But in the case of a regular doctor’s career, it just doesn’t happen very often. He told me that most of his cases had a focal point and he was guessing Graham had one in his bones. Graham’s bone scan would be scheduled soon. He said we’d do an ultrasound to check his major organs, too. We would also put in a PICC line because Graham would need an elongated treatment to knock out whatever was bugging him. (Bad pun, I know.) So began the NPO (nothing per oral). Have you ever held a screaming baby that wanted to eat, the food was right there on the counter, but you couldn’t give it to him? That was tough. I had a very small empathetic few days in the hospital during tests. I can’t imagine how mothers around the world who can’t feed their babies feel. Graham had to go six hours without formula, and nothing but clear fluids (Pedialyte) until two hours before tests. (Then nothing until tests were completed.) NPO usually went a long longer than that because they would try to get in more than one test a day.
It was Friday by the time all the tests started. We did the ultrasound of his organs first: nothing. Bone scan was next: nothing. (They had to give him a radioactive isotype for that one – yikes.) They also had to sedate him for the bone scan. That was hard to watch, but I didn’t leave him for a second. Dr. Beverly (our previous hospitalist – he’s from Georgia and has the most awesome accent) worked on sedation and helped us through the rest of our hospital stay. The next day, Graham had to go NPO again. They did the PICC line that day. I didn’t know until all of this hoopla, but a PICC line is very different from an IV. An IV goes right into a vein and delivers intravenously right at the sight of insertion. A PICC line has an insertion point, usually in the arm and then a tube is sent all the way through a major vein or artery directly to the heart. The end of the tube rests right above the heart. They stitch the insertion cap to the skin to keep it in place. (That part is creepy.) Thankfully, they dress it up all nice and neat so I don’t have to see it. The sedation after the PICC line made Graham forget how to suck for a few hours. He was so hungry but couldn’t remember how to suck from a bottle! I ended up giving him some of his formula through a syringe until he could do it on his own.
They kept Graham in the hospital until Monday to make sure that all of his cultures came back negative and that the antibiotic was working. Thankfully, it was, and we were sent home on Monday afternoon with instructions to meet with Dr. O. in a week and a half. Graham did great on the antibiotics. They had a Home Health nurse come and take blood draws every week and show us how to administer his medication. Once, Graham’s acid reflux was so bad, he threw up all over the dressing and they had to come and change it because it is not allowed to get wet. We have to watch him for fevers carefully or else we’re back in the hospital for 48 hours to make sure the infection isn’t taking over for some reason.
I finally scheduled a “newborn” photo session. Graham had his PICC line but I was tired of waiting. We found Poppies & Posies nearby and they were fantastic on working with us. It was our second reschedule because of Graham’s hospital admits. They even let us divide our session into two so we could get pics of all five of our kids together at a separate time.
The next little while with Graham went pretty well. At this point, we had put Calvin back on Neocate because we had worked with a dietician and didn’t feel like the goat milk concoction had enough of what the boys needed to be completely healthy. We got the hang of the PICC line and met with Dr. O. (His sweet nurse, Jill, gave me $400 of Neocate formula to take home. I almost cried right there in the clinic. This formula is $50/can and only lasts ONE twin for three days. It’s more than $200/week to feed the babies!) Dr. O. said because Graham’s case was so intriguing (no fever and still bacteremic) they decided to give him a month of antibiotics in case there was a focal point that we just hadn’t found yet. We agreed it was a good idea and went on our way.
The week after Graham got his PICC line, we did have another extra adventure. Calvin decided he hadn’t had enough attention or something, because we finally got the boys circumcised (week 7, baby!) and he wouldn’t stop bleeding. We spent the whole day watching him closely and getting worried about it. He kept on looking like he was trying to clot but blood kept running down his little thighs into his diaper. We kept watching it closely because it wasn’t actively running the whole time. I had a twin mom night-out event that I was going to (the first one I could make since the babies were born!) and headed out. Dovy took care of the babies and kept an eye on the bleeding. Unfortunately, he called and said I should ask the doctor if we should get it checked out because he had just filled his fourth diaper with blood. As a precaution, I called the nurse. She told me we should bring Calvin in right away. I came home, we found a baby sitter, took a picture of Calvin’s fifth blood-filled diaper, and headed to the Urgent Care clinic in Pleasant Grove. The PA there worked on Cal for two hours to try and stop the bleeding. Wouldn’t you know, our primary pediatrician was the doc on call that night. He showed up and told us he was determined to get it stopped. No way was he wanting to admit us to Primary’s that night, as that’s where people with blood issues end up going. He wrapped surgicell around poor little Calvin’s weenie and pinched as hard as he could for 8 minutes straight. (Yeah, Calvin shrieked the whole time.) He informed us, with shaking hands afterwards, that it was not a sissy pinch. He pointed at the industrial casing around the door and said he was a rock climber and could do pull-ups on that ledge. I exclaimed that I didn’t believe him. No way! To prove his point, he did several pull-ups on the ledge, up and down, up and down. We were all laughing our heads off, because if we didn’t, we’d probably have been bawling. The bleeding finally stopped, the doc told us to watch him carefully, and sent us home with strict instructions to head to Primary’s if we saw anything.
The next week, I took Calvin in for testing. They wanted to rule of hemophilia, just in case. On the way in, I smashed my thumb pretty well in the stroller as I was taking it out of the car. I had to run into the hospital, ask for ice, and have someone come help me get the twins in and out of the car. Calvin came back normal for all of his tests. For some reason, he just wouldn’t quit bleeding. The doc explained something about platelets and having a hard time clotting. I don’t understand how it works but I really trust him because he’s a great doc and he’s well-known for his awesome circumcisions. (Quickly pass over the bloody diaper pic if you’re queasy.)
The next week, Aunt Mo came to visit! She stayed a night and had a great time catching up with our little ones. Anjali came home from school after a Fund Run and threw up. I knew it was heat exhaustion (I even prayed mightily about it) and went to visit family while Dovy took care of her. She was, indeed, just fine. My parents arrived on Saturday, the 27th. We blessed the twins the next day in church. It was such a beautiful experience to hear what Heavenly Father had to say to these little boys. I did have the feeling that Graham would have other health problems, though. I mentioned it to Dovy that night. Little did we know…
We spent the week hanging out with my parents, taking care of the babies, and yes, making a wedding cake. I did the cake amongst the craziness. I wanted to help out a friend that had assisted us a lot during our hospital stays. Her son was getting married and she was hosting an Open House at her place. (The day before, I took Graham to Dr. O., who took out the PICC line! We were so excited to get it out.) Unfortunately, the night before I did the cake, Dovy and Anjali came down with a legit stomach flu. That totally stunk! Dovy and Anjali were quarantined and I took care of the other four kids AND made the cake almost entirely by myself. My parents were there in the evening to help out. My arms were so sore from kneading and matching colors on fondant, and I had to make a few adjustments to it after I finished it, but it all worked out and I thought it was incredibly beautiful when it was finished. Blessings come from the little things in life. :)
My parents took off on Sunday. We hung out for Conference and took it easy. Good thing, too, because the waters were not settled yet. I took the kids to an outdoor movie night at Anjali’s school on Monday evening. As we were finishing up, Dovy called me and said that Graham was acting crazy, just like he did when he had GBS the first few times. He was really worried and a pit immediately formed in my stomach. As soon as I saw Graham, I knew. The color had drained out of him and any time he was moved at all, he let out that all-too-familiar forlorn cry, the same one he had when he had GBS the first two times. I didn’t want to believe it, but it really seemed just like it. Statistically, it was impossible. But we knew what to do. I called our pediatric clinic and told them exactly what I needed: the pediatrician-on-call needed to fax an order over to the Pediatric Ward at UVRMC (Utah Valley Regional Medical Center) for a blood culture.
We headed over to the hospital. The first person to see us there was Dr. Beverly, our friendly Georgian hospitalist. He COULD NOT believe we were there. We told him why and he simply insisted that there was no way (really, there isn’t – there are no known cases of babies having this three times that any of my doctors know about.) He happened to have three residents sitting in his office and we sat down and chatted about the entire event with all of them while they got to work on Graham. Dr. Beverly was seriously shocked we were there. He said statistically it was absolutely impossible for Graham to have GBS a third time. It just doesn’t happen. He did, however, say, that he really trusted our judgment because we’ve been spot-on with Graham’s other problems. He said he’d trust our intuition and ordered an extra test that he knew Dr. O. would want to see if Graham truly had GBS. I also insisted that they take draws from two locations on Graham because of his incredible history with difficult sticks. (The docs have concluded that he gets contaminants in his cultures so often because of the difficult stick, as well. Also, the extra culture they took at Primary’s the next day ended up being a false negative, so it was a huge blessing that we had two positives that night. A false negative can occur when there’s not enough bacteria in the sample of blood to grow and culture over a period of time.) We wanted to make absolutely sure that if “gram positive cocci in chains” showed up in one culture that it also showed up in the other culture and therefore was not a contaminant. (If it showed up in one and not the other, we’d have to wait 48 hours in the hospital to find out if it truly grew into GBS. If it ended up being gram positive in both cultures, then we’d know for sure right away.) We were at the hospital until about 2AM, waiting for Graham’s CRP (c-reactive proteins, showing an infection) and CBC (white blood cell counts) panels to come back.
The nurse came out and told us that Graham’s CRP was 0.1, which meant he was not fighting off an infection. His white blood count was also low. We were good to go. However, when we pushed the button in the elevator, I told Dovy, “This is exactly what happened last time. Graham’s numbers were low but he still came back bacteremic, and THEN his numbers skyrocketed.” We went home, held Graham most of the night, and got up with the other kids for school. I called into the Pediatric Ward to see if anything had changed with Graham’s numbers. They said everything looked fine. (I was definitely starting to feel crazy! He was NOT FINE and this just did not feel like a stomach bug, constipation, or the flu.) However, they did say that if for some reason I was still concerned about Graham acting strange to take him into my pediatrician for a check-up, anyway. They said they’d call me if anything changed. (The neat thing about the hospital, unique compared to everything else, is that there is always someone there, 100% of the time, awake and alert, to get you results and answer your questions at any time, night or day, 24/7. Can’t say that for your insurance company, eh?) Well, nothing changed, so I called in to my pediatrician and they scheduled an appt for me within an hour and a half. I worked for the next little while to find babysitters for Elli and Lincoln, and just as I was getting ready to load twins into the car and get Lincoln ready, the pediatrician-on-call (the one who had made the original culture orders) called my phone and said that Graham was positive again and that we needed to go to admit at Primary Children’s Hospital in Salt Lake City. I couldn’t believe what I was hearing, but at the same time, I turned to my little Graham, who had now been lying listless on the bed for over an hour, staring at nothing, and said as soon as we hung up, “I knew it, Graham. We both knew it, and we’re going to save you. You’re going to be okay.” Dovy and I rushed around for the next 20 minutes, packing up a hospital bag for me, getting the twins as comfortable as possible, and arranging with friends to handle our other kids.
At one point, we started worrying about Graham even more. He had hardly moved any of his limbs for a little while and his color was becoming more pale. Dovy worriedly leaned over to him and couldn’t get Graham to react to him at all. I came over and said, “Graham, please let Mommy know you’re okay.” Within a second, he looked me right in the eye and let out a little “aahh.” He then returned to his listlessness. We both held his little hands and cried as we prayed he would be okay. It was a tender mercy that he was able to respond in just that moment. We needed to know he was alright. We finished packing, my friend came over to pick up Lincoln, and we loaded the cars. (We took both up to SLC so I could have one up there as we knew that Dovy would have to come back to the house to take care of the kids.) We took off.
Driving up to Primary’s, I was a little nervous. We were so close to home when we were at AF and even closer when Graham was at UVRMC. I wasn’t looking forward to being up there, but we knew it was the right place to be. Dr. O.’s team worked out of there and all of the specialists would be there, too. As Graham was being admitted, Dr. O. came and talked to us. He said he was so sorry that we were back there and that he had never heard of a baby getting GBS three times, especially one that had been on antibiotics for a solid month. He really hoped to figure things out during this hospital stay.
Dovy and I stayed with Graham all day, talking to doctors, discussing tests, getting an x-ray and preparing for the next day. It would be a long day of NPO again. He went off of food at 3:30AM that night. He had his last fluids (Pedialyte) two hours later at 5:30AM. I stayed the night with Graham in the room. I barely slept with all of the comings and goings of the nurses and needs to do stats on Graham, along with his last few feedings. The morning came too soon.
The team got ready to do Graham’s first test. They scheduled another closer look at his heart through ultrasound. That didn’t happen until 11AM. (Graham on NPO for 6.5 hours.) He was pretty upset, but by some miracle, I was able to calm him down enough to fall asleep on the table while the tech looked at his heart. At first, she told me he’d need to be sedated. I prayed hard, whispered in his ear, and held his little head close to mine as she continued her search. He calmed down and she was able to complete the test.
Next test was an ultrasound of the major veins/arteries on the arm that his original PICC line was placed in. The theory was that maybe he had some sort of focal point in the vein where the PICC had been originally. Again, Graham was inconsolable. (I would be, too, with no food for that long! You should see me on Fast Sunday. Heh.) Again, this tech told me he could not perform the test and that he would need to be sedated. Again, I prayed fervently, placed my hands firmly on Graham, put my head close to his, shushed him quietly, and told him it would be alright. The tech turned on some music and within a minute or two, Graham was quiet and still enough to perform the test. He even fell asleep for most of it. The tech left to get another, more experienced, tech to check his work. When that tech came in, he turned to me and said, “I hear you’re the mother with the magic touch!” I knew there was more at work there. Nothing to find on that report, either.
They originally wanted to do a CT scan later that day, but that department was worried about all of the radiation exposure (so was I!) and suggested doing an MRI instead, which is done with magnets. They scheduled the MRI and we waited. Graham on NPO for 10 solid hours. For some reason, MRI did not call us down and our nurses could not get a hold of them. Our nurse went to lunch, but at this point I was getting a little disgruntled. Graham had been NPO for 11 hours and I was exhausted from holding a crying baby. If we weren’t going to get an MRI done, then we needed to just feed him. I finally pulled Dr. Stone (acting pediatrician over all the residents there) aside and begged him (very nicely, I might add) to get a hold of MRI however they could and find out if the procedure would happen that day or not. Within a few minutes, they found out that there had been a lot of trauma (*sad face*) go into MRI that afternoon and Graham kept getting pushed back. Thankfully, I was able to feed Graham (twelve hours into NPO). Unthankfully, it would mean NPO again the next day. I thanked Dr. Stone for working with me and getting G taken care of. He replied, “No, thank YOU. You have been amazing. We wish we could clone you!” I could tell they were really grateful that I was so easygoing and trying so hard to be understanding despite how difficult these stays have been.
I suppose hospitals have some really difficult situations and some really sad parents/patients that they have to work with. It certainly is high-stress and difficult to be patient sometimes. But, I have learned a few things about hospitals, one of which is that everyone really is trying their best and there really isn’t any sort of rule about “the customer is always right.” That’s why we’re called “patients.” We’re not customers. We can’t be. If you’re stable, you can wait. We’re talking about bodies here, and there’s always someone worse off than you and you might need to be bumped down or over or away until someone else’s body gets saved first…
That evening, the family drove up to see us. It was Lincoln’s third birthday! I left Graham behind with the capable nurses while he slept. We went to Red Robin for dinner. Lincoln ordered Mac ‘n Cheese. (Typical.) Our waiter was awesome. He came from a huge family so he was super on-the-ball and got us in and out of there super quickly. It’s amazing how chaotic and disruptive you can feel when your infant (well, one of them, at least) won’t go to sleep and is mad about it, and you’re trying to feed three other crazies in a restaurant with a senior couple next to you and a first date to your other side. Sheesh. They gave Link an awesome free dessert, too. We headed back to the hospital with a Costco chocolate cate – Link’s request. If you ever accidentally give that boy vanilla, he will cry and beg for chocolate. haha! We bought one “three” candle and lit it. We had him blow it out super fast and waved paper plates frantically over the smoke to disperse it quickly. I was totally terrified of bringing on the sprinklers or a fire alarm – in. the. hospital. We didn’t, though, and we were so stuffed from dinner that only two slices were eaten out of the cake. We shared the rest of it with the nurses on the floor. (It was eaten by midnight!) Link got some John Deere tractors in a large John Deere case and was super stoked about it. I smushed my little boy with lots of kisses and hugs and sent my family on their way. Super hard to be away from your kids, but it’s especially hard for a new mother to be away from her infant. My heart ached for Calvin the most. It’s just weird to be separated from your baby. And it’s a mind-trip to still be with another baby… who is also your baby. It’s crazy but amazing at the same time.
NPO started at 5:30AM, with his last clear fluids at 7:30AM. (P.S. In case you’re thinking, “Great! At least he had some water” think again. This DOES NOT sate a baby’s hunger in the least. haha) MRI ended up being at 12:30PM. While I waited to go down, I had two fun visitors. One was Diana, a friend part of a close-knit group of ladies that I’ve been dear friends with since my freshman year of college. We’ve lived across the nation from each other over the past decade, but fate brought her back to Salt Lake City with her two children. She works at Primary Children’s hospital as a research coordinator and I didn’t even know it! She came and visited me every day that I was in the hospital, bringing me food and visiting with me through the hard times. On the first day, a few moments after she came into my room, the charge nurse knocked on my door. I immediately recognized her as one of my residents back when I was a sophomore at Deseret Towers. I said as much: “You were one of my residents!” She replied, “Actually, no. I’m a nurse. Wait… Natalie?” Her name was Alicia and it was fun to make another connection. Little tender mercies. :)
We were finally taken down to get the MRI done. I sang to Graham in the prep room as I waited for them to come get us. There was a really sweet Nurse Practitioner, Heidi, that would be in charge of the sedation for this test. Right as I was getting ready to give her to Graham, and had just finished explaining his situation the past two months, she got tears in her eyes. She said that this was so close to home, and probably partly hormonal, because she had just had her first baby – a girl – two weeks before I’d had my little guys. She said she couldn’t imagine how I felt, being away from my other kids and having all this crazy stuff happen to Graham. It was a blessing to have her there.
Heidi and I sat in the observation room as the sedation nurse prepared Graham for the procedure. They had to take off his onesie because it had metal snaps on it. They changed all of his leads with special ones that would not interfere with the test. Heidi explained that if someone was in the room during the test, the electrons in his or her body would alter the results of the test. Someone wearing bobby pins in their hair could have them shoot across the room into the magnet, destroying anything in their path. They said the temperature in the room was kept at 67.5 at all times because of the crazy machinery in there. (I am fascinated by how all this stuff works. Hope you don’t mind the extra info; I think it’s neat.) As soon as the test started, I had to leave. (Parents aren’t permitted during the test.) It was hard to see Graham’s tiny little body rolled into the machine, all alone in that big room. That was the first time I felt the tears come during that stay. It was Lincoln’s birthday and I was really bummed out about not being able to be with him on his special day. I knew I had to be with Graham, but it was hard, nonetheless. And how do you explain that to your sweet three-year old?
I waited for two hours. I ate lunch with Diana, updated family, ate an icecream Twix bar (don’t judge) and waited some more. I went back to my room and laid on my bed/”couch.” (Quotations inserted purposefully because it’s really just an overstuffed vinyl gym mat.) Within a few minutes, they wheeled Graham back into #3017. The nurse forewarned me: for some reason, his temperature had dropped critically towards the end of the exam. I was told before I left him that his temperature would creep up because it gets very warm inside the machine. However, his temp dropped and they had no idea why. They had bundled him in myriads of blankets, a beanie, and hot packs. Because he was still sedated, he was as still as could be. I touched his little face and he was indeed cold. It was a very eerie, uncomfortable feeling and sight to see. I held him close, willing him to warm up and come back to me. They kept a nurse with me for almost two hours that constantly checked his stats and chatted with me while Graham recovered and came out of sedation. He did well. He was screaming for food after he came out of it. My sweet friend, Cherie, who lives a few minutes from the hospital, came to visit me that night. I seriously needed it. Thanks, awesome friend!
I talked with Dr. Stone again. They were considering doing another bone scan in the morning. They would talk to the ID team again in the morning and get back to me. I knew what that meant. NPO again. They said they’d put in the order that night. Well, the order never got put in, but I knew better. I feel like I was totally guided so that we could move this whole thing along. I put Graham on my own NPO. I fed him at 7AM, asked for Pedialyte, and kept him on that until 11AM. I still hadn’t heard about the bone scan. (I chalked this up again to the man. It just takes times for the residents to do their rounds, to get back to the doctors, for the docs to meet to discuss all the cases on the floor, to make things move along, to get orders put in, yadda, yadda, yadda.) Because I knew this whole process, I kept him on NPO. One of the residents informed me that they would be canceling the bone scan (as other evidence provided proved no bone infection) but instead be putting in another PICC. They sent up a PICC nurse to take a look at his veins through ultrasound. She said his veins looked tired (what else is new) and that they’d need to send him down to Radiology to get it inserted. They also said, sorry, but he had to be put on NPO and we’d have to start soon to get the PICC done by the end of the day. Ta-da! They were really impressed when I said I’d put him on his own NPO and that he would be ready to get the PICC inserted by 1PM. Another ta-da! They had a slot available for him right at 1PM, exactly six hours from the time I put him on NPO. It was perfect. He went down, he went through sedation, they inserted it right in, and they sent us back up. By the way, I’m not super comfortable with sedation. It makes a baby grumpy and weird for a while. Graham, however, after a few hours, always bounces back, and he was back to his happy little self. They gave him a developmentally appropriate mobile while we were there (black, white, and little splashes of red with bold patterns). He absolutely loved it. He could lay in his crib, kicking his little legs, staring at that mobile for up to two hours at times, happy as a lark. I’ve never seen anything like it. The nurses hadn’t, either. He’s seriously an awesome baby with an incredible personality. I can’t wait to see what he’s like when he gets older.
Finally, around 5PM, the doctor and a resident came by to see me. Good news! We knew the drill, we’d done this before, they’d literally sliced my baby open with a fine-tooth comb with all the tests they had done, and decided to send us home. The PICC was in place, they set up Home Health, and got us ready to discharge. It still took 3.5 hours to get out of there, though. I’ve learned this about the hospital, too. There simply is no schedule. Again, because they’re working on other people’s bodies out there other than yours and, most of the time, you just don’t come first, we had to wait. Finally, my nurse helped me load up and get all packed up in the Nissan. I was so grateful that we had brought our extra car. I was able to drive straight home with Graham.
My cousins, Mark and Kait, and good friends, the Burtons, were there waiting for us, along with my sweet husband. My other children were already asleep, but I knelt down and kissed Calvin on his little fuzzy head with tears in my eyes. I had missed him so much! Mark and Kait had already set up a plan: they would watch ALL of our kids while the Burtons took me and Dovy out so I could eat something other than hospital food and enjoy a few minutes as a normal person. It was exactly what I needed. But, man, was I beat. I came home and crashed right into bed after a hot shower.
We spent the weekend recuperating, meeting with Home Health to get Graham’s medicinal needs taken care of, and even went to church.
Monday night, another storm hit. Elli got croup and was very miserable. We quarantined her, poor thing. My cousin, Kathryn (Wolthuis) McOmber, showed up on Tuesday afternoon as a surprise. She said she was there to help and did everything and anything I asked of her, including getting up at night to help with the babies. On Thursday afternoon, I told her that it had been almost three months since I had sat down and done nothing for just a little while. All I wanted was to have the time to sit down and relax. It’s been crazy. Even in the hospital, it took me the entire time I was there to get through half an hour of a Gilmore Girls episode (which I just started on Netflix for the first time and love it). Anyway, I got my wish. Three hours later, I vomited. Stomach flu, whoo-hoo! As such, I was quarantined. It was a rough 12 hours, but I made it through. I’ve gotten two days to myself since them to watch as many episodes of Gilmore Girls as I’ve wanted, sort through pictures, watch Captain America, and sleep whenever I wished! It was awesome! I should get stomach flu more oft— wait. Did I just say that?
Off to new adventures! Dun-duh-duh!
My Hospital Top Ten:
1- It takes a really knowledgeable person to be a doctor. There are some really awesome doctors out there but it takes a very special brand of person to be a nurse. He/she cares about and loves you in a way that other people just don’t. They are also OCD. All of them. Brownie points.
2- Get to know your nurses. More than just where they’re from or how many kids were in their family. Most of them came to nursing through very interesting ways, often in similar circumstances that we have been in with our children the past few months. It’s really humbling and awesome to learn about. Also, they are not perfect. Are you? They try really hard, but you are your child’s best advocate (all mushy-mushy, but it’s true). You know your child best and even though they work about a 12-hour shift with you, remember that they have several other patients they are in charge of being on top of just as much as your little one, and again, it IS only 12 hours. You’ve known your child, his treatments, and his story his whole life. Help them out a little and don’t be ticked off if they get it wrong – it’s most likely an accident.
3- You can never have enough Lorna Doones or Cranberry Juice (pick your poison here, they’ve got lots in that little Nutrition Room of theirs) in a stressful circumstance.
4- Hospitals smell. They just do. Strip down and shower/wash everything when you get home.
5- There is always somebody, somewhere, alert and awake, at any time, night or day, that can answer your questions 100% of the time if you know the right person to call.
6- You WILL be pushed back. There is always going to be someone worse off than you. Respect that and know that there’s probably someone hurting more than you and they need it more than you do. You aren’t usually pushed back just because they felt like it. Expect discharge to take anywhere from a couple of hours to part or most of the day just because that’s the nature of the beast.
7- Ask lots of questions and question everything.
8- The docs won’t take you seriously until you are proven right. At first, this really bothered me. However, I get their point of view. They deal with all kinds of false alarms all of the time. Earn their trust, though, and they are definitely in your court.
9- Your most incredible supporters probably went through or maybe are going through something more difficult than you have. Learn more about them and you will be amazed. (One of the sweetest friends I made at the AF NICU was my cleaning lady. She was incredibly sweet and at the end of my stay I learned that she had had her own hellish experience with her little one.)
10- Hospital food sucks. You know it. I know it. I just thought I’d make sure you didn’t forget.