Adventures in Swedish Hospital

This posting documents our 3 week stay in Swedish Hospital in Seattle following Quince’s birth. I realize that the tense is odd you as read it, switching from present to past, this is because parts were written as it happened and others I filled in as I put all the notes together. After having a “textbook” pregnancy, this was not an easy venture. Our story starts shortly before he was airlifted by helicopter.

Quince was put under observation in the nursery at Olympic Medical after he was born, about 7 hours after his birth the doctor on call noticed him having seizures. At first it was a small twitch to catch his attention, sometime later it was a seizure which displayed itself physically via limb movement, in his case it was an arm.  It was then that the doctor came to us and said he would like to transfer Quince to Children’s Hospital or Swedish Hospital in Seattle, preferably by airlift. He had already phoned a colleague at Children’s to confirm the intention to transfer Quince.  What does that mean? We didn’t know, and he couldn’t tell us. He said that he felt the transfer was safest for Quince as they could better treat the seizures in Seattle. Our hospital, although great for the area, doesn’t have the ability to treat infants on a lot of things. As it turns out the Neonatal Intensive Care Unit at Children’s was full, so he was transfer to Swedish.  We found ourselves with a full term baby and joining a few of our other friends in the “NICU club”. It is a club we were most surprised to be part of.

While Quince got to ride by helicopter to Swedish, Richard and I went by car. Once the transport isolate was loaded, the weight limit was nearly reached and they could only carry the pilot and two flight nurses. I was given a hasty discharge, we ran home throwing things in a suitcase and loading it into the car. Our car was packed full as we didn’t bother removing anything that was already there. By pure chance, we ran into our neighbor who said she would feed the cats and turtles for us while we were gone. The whole car ride there I was on the phone calling people to let them know what was going on. When we arrived at the ferry terminal, Richard phoned the hospital in hopes of information about Quince. The nurse said he was stable and doing well, no longer on oxygen and undergoing an EEG. By the time we got there he had already seen a neurologist and was just finishing up a one hour EEG. The tech was getting together the stuff to remove the leads from his head, which had been put on using a special gel. When we checked in we said our son had been airlifted this morning, she took one look at us and said “Oh, you must be with baby Chan!” Hmm, was it that obvious? (Actually, in looking at pictures of me from that day, yes it really is.) We were informed that the family room had a huge group waiting for us: Cecile, Alicia, Kami, Al & Cas and Rhia, Chris and Liz. Kami, Al & Cas had brought food for everyone, which was great since Richard and I hadn’t eaten much at all over the course of the last couple days. Our most recent meal had been about 3 hours or so after I delivered. After we returned from our initial look in at Quince and eating lunch, we then ferried everyone in one at a time to see him.  NICU only allow two visitors at a time and one must have an arm band. For those who have never visited a NICU before, it can be an overwhelming experience. You go inside the locked doors and wash up to your elbows with this nasty kill all soap for 3 mins(this only needed to be done when you first entered for the day or had returned to the hospital after being outdoors, all other times you wash your hands for 30 secs). Between each interaction with a medical device and baby, you use hand sanitizer. Something I’ve never been big on, however I find myself missing it upon our return home.

When we saw him, he was pretty snowed over(in other words on a lot of medication) in an effort to control his seizures. By the time he arrived he was having 3 mins seizures back to back. His first isolet was one with a warming element off the top, due to all the cords he wasn’t in a normal crib style. He was being given liquids through one iv and medicine through the other(the picture marked “arrival” is before he had the iv in his foot put in), there were so many pokes that his feet and hands looked like swiss cheese with little red spots from where they had put the needles for various blood tests. Saturday they couldn’t really tell us much about what was going on with him. Many of the tests didn’t have the results back yet and it was just flat too early to be drawing conclusions.

Sunday was pretty much the same only Quince had been hooked up to an EEG for Saturday night, it was for 12 hours they said. We each got to hold him the one time Saturday afternoon. That activity wouldn’t happen again until Thursday evening. Other than that, it was more waiting until Monday morning.

Over the course of the first week, Quince was subjected to more blood work, more seizure medicines, having a PICC line put in, an MRI, a really long EEG and a spinal tap. His care times were established for every 3 hours at 8, 11, 2 and 5 around the clock. During those times we are allowed to come change his diaper, take his temperature and watch his feeding tube in action(once he got that put in). At first it was really hard since we were basically helpless in terms of his care and how to help him. We knew that he responded to our voices by watching the EEG monitor. Since we had such limited interaction with him that sort of became a game by mentioning things we would say at home, such as the names of the cats and my favorite songs that I would listen to while pregnant. This gave us a huge amount of hope that he was still in there and knew us/things from home. As you can see from the picture he looks more than just sleeping and just completely out of it. We spent Saturday night in one of the parent stay rooms offered by Swedish. After everyone left that day, Richard and I brought up some stuff from the car, I broke down crying as we got ready for bed. What I was really crying about, I’m not sure. Yes, I also had physical pain, which only aided in making things harder to deal with. We had been looking forward to this baby for the past 9 months.

As parents, we are suppose to do all we can to protect him, yet here we were in Swedish completely helpless. Did we do this to him, and was there a choice we could have made that would have changed this outcome? We don’t know, and never will. At the time of labor we felt we made the best choice given the information we had. Very early on, Richard and I decided that it wasn’t worth it to worry about what could have been and to focus on now as we had a new baby boy who was currently getting treatment for seizures by the amazing medical staff at Swedish Hospital. All we could do was look ahead and wait.

Monday, Quince was given his first MRI, and the results came back quickly which was nice as it was the first piece of real information we were given since we arrived on Saturday morning. The doctor showed us the pictures and said unfortunately he couldn’t tell us what it meant as he just didn’t have the knowledge. We would have to wait for the neurologist to give her assessment on them. The MRI pictures showed 3 tiny pin spots that were damaged areas found through doing a scan which traces the flow of electrodes(fluids) through the brain resulting in a fuzzy picture. A few hours following this first MRI, Quince was then put on an EEG that would last nearly the whole rest of the week. He also had a feeding tube put in place and was finally being given breast milk through it instead of being solely on iv fluids. Even though he was still out of it, somehow this made us feel better.

It wasn’t until Thursday afternoon he finally got out of the squid hat, otherwise known as the EEG leads, and he was cleaned up. It was amazing to see his head and seemed like forever since we last saw his head without the additional wires attached. I came back from pumping to find Kami sitting in a chair, with a camera while Richard sat in the rocking chair holding Quince and his feeding tube. My jaw dropped. Later that night I got to hold him, after 4 days, it was an amazing feeling and I found myself  very reluctant to put him down and go to sleep.

During that first week they made the choice to go ahead and give him a PICC line, the medicines he was on were harsh on the vines in the hands and they were worried about causing lasting damage to them. He wasn’t given one when he first arrived as no one thought it would be there very long.

While doing an xray to check the placement of his PICC line, they discovered that he had also fractured his clavicle at birth.  The bone should heal in about 2 weeks, until then their goal was to keep him from moving that arm too much. The PICC line is great as he no longer has limbs of iv lines, and we can move his arm without fear of damaging the iv site. Friday, Quince got a diuretic to start flushing some of the phenobarbital anti-seizure medication out of his system. So every time we get to see him, he is a little more alert and certainly more active. He’s getting good at dislodging his feeding tube, and made the poor nurse work by knocking his dissolved oxygen sensor off. And of course, he crawls out of the sling for his shoulder every chance he gets! Pretty amazing for a little guy who is still quite drugged up. Sometime this night, he moved from the warming ioslet to a crib. His body temperatures were on the low side but the nurses reassured us saying that’s often typical when they first make the move. The nurse he had that day picked him out a rather nice matching outfit and the quilt shown in the pictured. Although the clothes stay at the hospital, the quilt gets to come home with us.

Saturday night he not only took one of his medications without having a DESAT, but also bottle fed for the very first time. The feeding tube was moved from being in his mouth to his nose to help him nipple on either a breast or bottle better. We learned only a few days ago that the path to going home involved no DESAT after taking either medications for 5 days and at least 2 days of consistently taking meals from either the breast or bottle while gaining weight.

Sunday morning he breast fed for the very first time! We had tried Saturday afternoon, but he was too tired and ended up just nuzzling rather than actually eating anything. In our opinion, this step brings us so much closer to going home and gave us a lot more hope. We ran home to restock supplies, check on the house, etc on that rather positive note.

I returned Monday to Seattle leaving Richard at home, who had a bunch of work which couldn’t be done outside the office. Before I returned, Quince received his 2nd MRI. Of which he had to be given a sedative for as he spent the first part of it crying and moving. Since he is out again, it’s back to mostly tube feeding for him. Boo.

I got one of the parent stay rooms for Monday and Tuesday nights. They are great in that it allows me to go and visit him whenever I want and never have to worry about traffic or moving the car, etc. It is also bad because one tends to spend too much time hanging around the hospital. The PICC line was removed Tuesday when I arrived for his care at 8 am. Getting the PICC line removed means they are starting to give his medicine orally(although it is actually done through the feeding tube to insure he keeps them down). However, to us it feels like a huge step up! It was good he is still rather sleepy when she removed the line as he wiggled around, making lots of interesting faces while sleeping. I’m sure had he been awake it would have been a bit more difficult. Much later in the afternoon the doctor came by, she had just gotten off the phone with the MRI tech who just finished reviewing it. In fact, the tech hadn’t even posted his report in their system when he phoned her. As it turns out, his MRI was changed from the first one. This had them questioning what the damage actually was caused by; was it from the seizures, lack of oxygen at birth, or a stroke. She told me that she wanted to have a 3rd MRI done beginning of next week to see if their was yet any other changes, she was also fairly confident that we would still be here at that time. Although,  if we did go home by the end of the week, we could easily make an out-patient appointment for it next week. After hearing the news about his MRI, I wasn’t in the best of spirits, however the news wasn’t that bad. After all changed doesn’t always mean bad, she simply told me that they wanted to do a follow-up. The nurse that night suggested I do kangaroo care with him, I said I hadn’t done it before. She was highly supportive of it and quickly wheeled in one of the chairs and closed the curtains all the while saying how I was going to really enjoy it. For the full benefits one has to sit with baby skin to skin for at least an hour, longer is preferred. You take off your shirt and baby is striped down to their diaper, once in the chair they are placed on your chest. The nurse said people do all sorts of things during this time including nap. This activity is really good for baby and parent as it promotes bonding(which can be a challenge while in NICU), helps regulate baby’s body temperature and said to promote brain development. All that being said, it’s the best nap I had in weeks.

Wednesday afternoon, Richard caught a ride to Seattle with Moe. Each week she brings her daughter to Swedish for physical therapy. When I talked to him Tuesday night, it was still sounding like going home by the weekend was a possibility. The timing worked out really well as Richard wasn’t sure how he was going to get back to Seattle. Since I had already used the parent stay rooms for 2 nights, we spent the night at Kami’s.

When we arrived Thursday morning on the 6th floor, we found that nursery 4 was missing one “Chan baby”. The nurses at the front desk apologized for the night nurses not telling us or leaving any kind of message about him getting moved down to 2nd floor ISCU(Infant Special Care Unit). We learned that he was moved down early as they had a couple critical babies come in. When I spoke with the doctor a few days ago, she had told me he was about 4th down on the list to get moved there but to not be surprised if we went soon should they need to make space in NICU. We knew they hadn’t lost him, however it was quite a surprise.

He no longer need to be monitored  as much, but was still working on breast/bottle feeding consistently. In terms of going home, it is a great move as all NICU babies go to ISCU before finally leaving the hospital. We overheard that they aim to have babies there no longer than a week. Yay! We thought this was great and maybe home by beginning of next week! He also hasn’t had a DESAT in a few days and been nipple feeding better, so it looks good.

While out of the hospital on Friday afternoon we just missed seeing his neurologist stop by. I received a phone call from her saying that she was concerned on how Quince had progressed. She felt that for being 10 days old, he should be farther into recovery. When I hung up and relayed the information to Richard and Kami, I wasn’t really sure what she meant when she said he wasn’t as responsive. From how Richard and I saw it, he was plenty more responsive than last week or even a few days ago. She also said that since his MRI was different than the first one, she would be ordering a 3rd to be done the middle of next week along with a “short” EEG. We were left wondering what “short” meant as he has had a 1 hour, 12 hour and 4 day one. In all truth her being concerned about his progress hit hard. His doctors seemed mostly concerned about his eating, and both Richard and I felt that would come in time, also we aren’t opposed to keeping him on a strict schedule like he has been now. However, his neurologist saying she’s concerned struck different cords all together. We weren’t sure what that meant for his future or when we could go home.

Sunday afternoon, Richard convinced me to go home with him that night and return Tuesday morning in time for our meeting with his neurologist. He had work to get done on Monday that couldn’t wait. We also needed to pay a few bills that I couldn’t do online; such as car tabs which expire at the end of the month. Being that it looked like we were going to be at Swedish until that time, it would be hard to explain to an officer that my car tabs are at home while I’m in Seattle and unpaid for.

We called on Monday to the nursery and learned that Quince had taken a bottle for almost all of his feedings since we left and even woke up crying twice. A major achievement since he hasn’t woken up and cried at all. We were pretty happy about it. His MRI was ordered Monday but not on the schedule.

We rushed back to Seattle Tuesday morning to make it in time for his 11am care, afterwards we were suppose to be meeting up with our neurologist. His doctor found us and informed us that since he hadn’t gotten the MRI yet, our neurologist wanted to postpone our meeting until the next day so she would be able to give us the results. His EEG was now scheduled for Wed morning. Also the doctor said that he felt Quince is doing well enough to go home Wed, but more likely Thursday. He had no reported DESAT and had been nipple feeding really well the last few days; the only thing we were waiting on was the two scans. The nurse was to give him an iv heplock for a drug they wanted to give him for the MRI. They also asked us if we wanted to room in with him, this was mostly to teach us how to give his medicine and the final stage before going home. Of course we would, was our response. Getting to go home within the week was not what we were expecting at all when we arrived back and it was rather exciting. Just in case we decided to not tell anyone. Already we had seen things change in a matter of minutes and we both knew that this could be no different.

The MRI had been scheduled for 3pm and thus began our MRI time adventure. Before we knew it for various reasons, he was pushed back until 4:30pm. They ordered a drug called adavin, which is a multipurpose relaxant, drowsy and can potentially cause one to forget the events. Shortly before 4:30 he was given that. It worked pretty fast however about 10 mins after he got it the nurse found out he had been pushed to 5pm. That was ok he got the drug already they said, it should still have effect when they get him. Except, they didn’t arrive until more like 5:30 and by that time it was starting to wear off. They wheeled him down and relatively quickly returned; he cried the entire time and they weren’t able to go ahead.  Being too close to the time he took the last drug, they couldn’t give him more. Richard, myself and the nurse all noted that he was rather upset about life in general since getting the adaven and iv which made eating a challenge. The new MRI time was 8pm. Again he was pushed back due to a rush scan. Now it would be 11:30pm. That time rolled around and he was still fussy. They decided to get another dose of adavin for him, after giving him that, they loaded him up into the transport ioslet and wheeled him a way. About midnight, he was back and rather grumpy. Again he had been too fussy for them to do the scan, so it was decided that he would get put under full anesthesia. Hopefully they could do it in the morning.

After very little sleep due to a fussy baby, Richard and I woke up Wed morning and got ready early. The EEG tech was suppose to start about 10:30am and our neurologist was to come around 2 pm and talk to us about the results. Still Quince was rather grumpy, but could be calmed down enough to at least sleep. We had to revert back to using his feeding tube, which discouraged Richard and I. The doctor found us and let us know that the earliest we could get the anesthesiologist and MRI together was 4:30pm. Hopes of going home that day were crushed, but no worries as it looked like it would be the tomorrow. For some reason everyone was running late and the tech didn’t arrive until noon. By the time the EEG was finished, the tech passed our neurologist in the hallway. Not having the EEG information or MRI results, she couldn’t really tell us anything. So she said she would stop by again tomorrow morning with information in hand. She was thrilled that he was crying though. She said he already displayed a change from Friday and it was in a good direction. That made us rather happy.

His MRI had been set with the anesthesiologist for 4:30 pm. We were disappointed it wasn’t earlier, but it wasn’t worth getting worked up over as is wouldn’t change anything. So we waited and when it got to 4pm, he was loaded into the transport ioslet again and wheeled away. This time we thought, he would return much later. Shortly after he was taken a way the nurse came in and said I needed to go down to MRI and sign a waver for him to be put under. My thought was “Oh yeah, I completely forgot about that.” So we went down a floor to sign the waver. While we were there the anesthesiologist asked us when the last time he ate was, “about 40 mins ago” we replied. That’s not ok, as they need at least 4 hours of fasting. No one told us this and after they called up to the nursery discovered that no one wrote orders to not feed. So 4 hours from now, he would get his MRI! And we won’t feed him this time. After all that he did finally get the MRI done. They told us he would spend some time in recovery afterwards while the effects of the anesthesia wore off and for general monitoring to make sure everything is ok. Because the procedure was so late he spent the night back up in NICU where the nurses there watched over him. About 1am I went upstairs to see him and ask about how things went. They had gone just fine I was told, but it was amazing how drugged out he looked. The nurse just laughed saying he probably won’t ever be that “high” again. He looked at me, but it was slow and obviously with effort. He returned to our room on the 2nd floor at 6am.

We got up kind of early after he returned as he was hungry, etc. His neurologist arrived about 10:30 am, happy to see him awake and wiggling. She checked him over and by watching her if you didn’t know she was a doctor you might have thought she was just a lady playing with a baby. It was neat to watch her interact with him, testing different things which we don’t really have any clue about. According to his EEG results his seizure were still being controlled, however he is still continuing to have discharges. Good news is that his MRI had improved over the first two. Yay! I know “improved” isn’t great but we’ll take that over “we saw something else” or “there has been no change at all”. Due to the discharges, she wants to follow him more closely than she might otherwise. Also, she suspects he’ll have to stay on the medication until he’s about 3 months old. At this point, she can’t say what the seizures have caused damage too; will it be vision, hearing, motor skills or a learning disability we don’t know and probably won’t for a couple years. There is also the chance that none of those could be effected. Overall, she is really happy with his progress. She admits to being a bit worried about him at first as they had such a hard time controlling his seizures when he first arrived and he has been slow to recover from everything.

The rest of Thursday continued to be a sort of recovery day for Quince. He’s mood was improved as well, he was no longer crying as much, and returning to taking food from a bottle. Later we realized his upset yesterday was probably due to the iv, since he returned from his MRI he had been much less grumpy. In an effort to help show them he was eating well we decided to forgo breast feeding him and only bottle feed to make sure that they were able to tell exactly how much food he ate. We wanted to make sure that we could go home either tomorrow or Saturday. In the afternoon he did the car seat test, after 90 mins of no events, he passed! Swedish has all babies who were either born under a certain week or were on oxygen do the test. Basically, all you do is put baby in their car seat and wait. Typically they would double the time it takes you to get home and that’s how long they sit there – if your drive time is 15 mins, they sit in their seat for 30 mins. Luck for us we only had to wait 90 mins instead of 6 hours. They recommend that no baby be in their car seat longer than that period of time.

That night we had a great nurse who helped us give his medicine, the first time we had done so. She also gave us a few other pointers to maybe try if he didn’t like one way of taking it. She went over a home care sheet with us and told us she found us to be quite capable, even if he doesn’t wake up and cry when he wants something to get our attention.

Friday morning the doctor came in earlier and asked us how we felt about caring for him at home and giving his medicine. We said everything went well with giving his medicine, we didn’t have any questions and felt it would be nice to finally go home. With that he said “Well, I think we can let you go home today. I’ll write discharge summary and get your nurse to remove the iv line.” Oh boy!! We could hardly believe our ears and looked at each other in excited amazement. The feeding tube and iv line came out and Richard hauled things to the car. During the time a lady from Bella Baby Photography stopped by and asked if we wanted to have pictures of him taken. “Sure thing” I said. She was in and out in about 15 mins. We were were glad she came when she did as his iv was gone and his feeding tube just removed, so he was looking cuter already. Not too long afterwards he was unhooked from all the monitors and had his hugs tag disarmed. It was weird to see him without any wires attached at all. We dressed him for the first time in clothes, and he took a bottle while snuggling with Richard.

The social worker at Swedish gave us some resources to get in touch with when we returned home as Quince now qualifies for Birth to 3 programs, and a pass to guarantee passage on the Bainbridge Island ferry. Before getting on the ferry we stopped by Kami’s apartment picked up a few things we forget there and then went by her work and said hello quickly. She picked up some lunch for us; great as we were pretty hungry. As it turns out we didn’t end up using the pass as the ferry wasn’t that full. We had booked a doctor appointment at the clinic in town for Friday afternoon, when they said they felt we could go home Thursday. When we arrived closer to the Hood Canal Bridge it was just finishing closing, but we still managed to arrive for the appointment on time.

When we got home the clinic was the first stop for us. It was funny to fill out the new patient forms which asked what his medical history was, especially after seeing that his file includes a fax that’s nearly an inch thick from Swedish. Since we were down there, we decided to stop by the clinic I go to and say hi. Laurie, one of the midwives I had, was there and thrilled to see the 3 of us. She had been there when he was delivered.

Once we finally got home I ordered Chinese take-out for dinner that my mom picked up. It was nice to have dinner delivery.