My 29th birthday last year was probably THE worst birthday in my life. My birthday has always been a little disappointing. Having a summer birthday made it difficult during the school years, no friends could celebrate because they were on summer vacations or busy with summer activities. I think my favorite birthday was when I turned 21 and my family all went out with me to dinner and my sisters gave me my very own baby book they scrap-booked with letters from everyone in the family in the back. It can still make me cry to this day. (as the baby of a family with 5 kids mom didn’t have much time to do a baby book for me) It is a day that comes and goes and sometimes there isn’t even a cake.
Anyway back to that worst birthday ever. Xander was still in the NICU at Fairview Ridges in Burnsville and was about 9 weeks old. Cory and I had planned a fun birthday celebration for both himself (his birthday is 10 days before mine) and I with an overnight stay at Treasure Island Casino (MN). It was supposed to be a good time celebrating our birthdays and having some time together as a couple and away from the past 10 weeks of stress with Xander’s birth and NICU stay. Nice plan right? And on my actual birthday!
The day before I was in my usual routine, going to work in the morning, driving to the hospital to practice BFing with Xander and then do some work from the hospital, pump, and BF again and pump again before going home. Xander really didn’t want to eat at the early BFing session, he did but I could tell he didn’t want to and we put the rest of the feeding down his NG tube. I think that was also the day we found out he had bi-lateral hernias and they told me he would probably go home with them and they would show me how to reduce them (pretty much scared me to death) and we would go in for the repair surgery when he was bigger.
There had been a lot of talk the past few days of preparing to take Xander home, making sure we had a car seat, the crib set up for reflux, feeding items, etc. It seemed we were in the home stretch and he would just come home on the nasal canula for flow, not even oxygen!
Xander was really fussy this day, and since he was in a big boy crib they let me hold him a lot to comfort him. Being at the hospital daily and knowing how important bowel movements are, I remembered he hadn’t had one since the day before and he was given a sepository which didn’t help. I also noticed his urine was concentrated when I changed his diapers. When Cory came to visit after work that day, he noticed Xander’s tummy was puffy and hard. He hadn’t wanted to BF so they were again feeding him through the NG tube. Not long after that an x-ray was ordered. They did the x-ray and were waiting for the results and I had put him back into his crib and he was looking so sad and just staring and then without any reaction his body forced up his last feeding because there was nowhere for it to go (he puked). It was like he couldn’t do anything about it, had no will to fight against it.
We got him cleaned up and I decided to stay and do my last pumping at the hospital to be with him and see what the x-ray results were and what the plan was. When the x-ray came back they could see a lot of large air pockets and since he hadn’t had a BM in over 24 hours they knew things weren’t moving in his bowels. He was hooked up to an IV for TPN and Lipids, they also drew blood and took a urine sample to test for anything they could find. It was so sad to watch them do all these things to my helpless little baby even without full knowledge of how bad the situation was. I acted brave on the outside but was terrified inside. It may seem odd but I wanted to see what they were doing to him (IV, catheter, etc) and know what was going on. Once he was somewhat settled, they let me know they would do another x-ray in the morning and figure things out from there so I went home. The Ridges nurses did commend Cory and myself for noticing the things wrong with Xander and probably getting him some attention earlier than if we hadn’t been there.
Cory and I didn’t know how serious it was, and there really wasn’t anything we could do, so we decided to pack for our overnight getaway and visit first thing in the morning before we left for TI.
We got a call early the next morning, on my birthday, that they were transporting Xander back up to the U of MN NICU. (not a good sign) We hurridly packed up all of our stuff for our trip and headed for the hospital… we’d already paid for the room. Cory and I debated about it, I said if we told them our situation they would most likely reimburse us. We ended up deciding that there wasn’t anything more we could really do to help Xander at that point and would try to go and it was only for one night.
When we got to the hospital (Fairview Ridges in Burnsville) we weren’t even allowed to see Xander, he was surrounded by a host of nurses, doctors, resperatory therapist, NNPs, etc. They were intubating him and preparing for the transfer. My dad called and said he had my Grandma Morsching with and that they wanted to stop by to see Xander. I tried to explain what was going on and that they probably wouldn’t be able to see him but they came to the hospital anyway. Cory and I were uber worried already and having them there didn’t help. Dad had out his camera and was snapping photos which seemed pretty inappropriate given the circumstances. It’s so much easier to take photos of happy times rather than sad times. We were waiting and waiting for Xander to be ready for the transfer. At one point the hospital staff around him cheered, to this day I have no idea what about.
As a pumping mom on a strict schedule I was getting overwhelmed with the situation and having anxiety about having to pump. I didn’t have my equipment with me so the nurses gave me a whole new kit and put me in an empty room to pump. While I was pumping they brought us stuff to clean out Xander’s room. Some of the things were transferred with him, but other things they asked if we could take home. The Ridges NICU had been my life for the past 6 weeks and it was hard to see things picked up and shipped off in the opposite direction of home when it had seemed so close to discharge.
The NNP, Julie, that was there to ride along in the ambulance with Xander asked us to sign paperwork for the transfer and for permission to treat him at the other hospital. I was so out of it that I signed my name Jody K. Hospital. We were talking about the U of MN hospital and aparently I couldn’t process a lot right then and ended up writing what I was hearing. It helped break the tension in the room and we had a good laugh about it.
We let them know about our plans for the overnight trip to TI. The NNP was ok with it as long as we were ok with it and they could get ahold of us at any time. There was also a nurse there from the U. Xander was transferred with an EMT, a NICU nurse and an NNP all on board. We didn’t even get to see him that morning, but they rolled him past me in the empty room 1 while I was pumping.
We followed after them when I finished pumping. By the time we got up to the U he was settled in with the transfer nurse that we had seen earlier. Xander was her only charge. He had his own nurse for a few days in his critical condition. We told the nurse our plans for the TI overnight and that it was for my birthday. It made me cry everytime someone reminded me it was my birthday. I didn’t want it to be my birthday with such a terrible thing happening. When we saw Xander he was sedated, unresponsive and so unlike the baby I had been playing with a couple days earlier, but they said he was stable. They said they had transferred him because he might possibly need surgery which is something that Ridges couldn’t handle. The resident pediatric surgeon was able to reduce his hernias and they were hopeful that the situation would resolve with that and they would observe him overnight.
We drove out to TI, played some slots to get enough points on my card so I could get a free Buffet on my birthday. We frequently walked by the doors to get telephone reception in case we had missed calls from the hospital while in a no service zone. It wasn’t a really joyous time. We were pretty subdued, trying to enjoy ourselves while the whole time in the back of your mind you are wondering how Xander is doing, is he getting worse?, do they need to do surgery?, is he getting better?, why is this happening after we had such an uneventful NICU stay so far. We had been blessed with a feeder/grower and it seemed surreal. We had been waiting for the other shoe to drop and here it was. On my birthday. It sucked. Even if we hadn’t gone to TI, we would only have stayed at the hospital for awhile sitting by his bed just looking at him and worrying, then leaving him to go home and get some sleep. There is no ideal thing to do in that sort of situation and we tried to make the best of it. We also knew he was in good hands at the U of MN. That was it, my birthday was over.
The next morning we got up, had breakfast, and were ready to go, planning on heading home to drop off all of our stuff before heading up to the hospital. No messages or calls overnight. We thought things were good, no news is good news right? We were about 10 minutes away from TI when I checked my phone and there was a voice mail. How did that happen!?!?! We checked it and the message was from the hospital, they were doing surgery today, this morning in fact and they wanted our permission. We needed to drive straight to the hospital. We pulled over at a place with decent phone reception (crappy t-mobile) and called them back. We were able to give permission over the phone and said we would be there as soon as possible. We changed the GPS directions to get to the hospital and it seemed to take forever to get there. I felt we couldn’t drive fast enough.
When we got to the hospital we went to check on Xander first thing. They were already finished with his surgery and said they were just sewing him back up!!! The curtains were pulled around his beside and no one could go into the nursery because they needed a sterile environment. (Sorry to other parents that had babies in our nursery) The news was good though, they had found that part of the intestines that had gone down into the hernia had been clamped shut by some scar tissue. They were able to just remove that scar tissue and straighten out his intestines to allow things to move again. No resectioning, or more cutting than needed.
Xander was put on an oscillating ventilator or a high frequency ventilator. A high frequency ventilator is a ventilator that delivers breaths much faster than a conventional ventilator. Conventional ventilators may deliver about 20 to 60 breaths per minute, but high frequency ventilators can deliver close to 1,000 breaths per minute. High frequency ventilators are much gentler to a preemie’s tiny airways, and can prevent lung damage in babies who will need to be ventilated for long periods of time. When babies are on this type of vent you cannot hold them. He was sedated to help him not fight against the ventilator and help him heal from the surgery. His body was holding so much fluid and we were waiting for him to pee and have bowel movements. When they changed positions his head would be “flat” on the side that was against the bed from all of the extra fluid moving down to that side of the head and pooling around the area against the pillow. You could see it slowly move to the otherside by gravity after they changed his position. (A few days later he still had some edema and Cory was feeding him with a bottle and he pulled his hand away and thought he had hurt his head because there was a big indent where his thumb had been, but it was just because of the extra fluid!)
We waited 5 days for improvement, but weren’t seeing any. His blood gasses were ok, but not improving. He was peeing and pooping again, but probably had emptied his bowels completely. Finally the Neonatologist on duty decided to try and take him off of the oscillating vent because sometimes older babies fight it because it doesn’t feel natural. Once this decision was made the respiratory therapist came over and changed Xander over to a traditional vent. They drew blood to test his blood gasses on the regular vent and he had improved already! Within 24 hours he went from the oscillating vent to the traditional vent to CPAP for a short period to high flow nasal canula and then to low flow canula. The respiratory therapist said that was pretty unheard of for a baby to go down on respiratory assistance that quickly. I was finally allowed to hold him after a week! When I was holding him for that first time, they did change his breathing assistance to something else and he started turning blue in my arms. I was freaking out because no one was running to me to help, but the respiratory therapist was behind me controlling the vent machine giving him breaths/oxygen and the situation was quickly resolved.
From that point on Xander did quite well. He was so hungry but we had to restart feeds slowly, he was on a 2mL/hour continous drip for awhile, they kept increasing it and waiting for him to poop. When things were going well they started to do bolis feedings again. (a larger amount in a faster time like 30 minutes instead of a continuous drip over 4 hours) After those went well we were able to start bottle feeding him again. They tried to take him off his pain medications at a normal rate but I believe he was having withdrawl symptoms and they had to give him more a few more times to wean him off.
Things were finally getting back to where we had been before Xander got sick around the 4th of July. They did not repair his hernias in the emergency surgery so we were waiting to hear when that surgery would be scheduled for. Then his surgeon went on vacation… but finally we found out the day we were moved into a boarding room that they scheduled the surgery for a few days later with the covering surgeon. They wanted to do it before we took him home.
The bi-lateral hernia repair surgery (and circumcision) were scheduled for July 12th. We were moved back into the nursery the day before. The day of his surgery he was scheduled for 1pm but didn’t get taken down to surgery until almost 2 hours after that. He was soooooo hungry. There were pacifiers all over the floor around his warmer from him spitting them out when the nurse wasn’t looking. Then when the surgeon came to see him before they started the anesthesia, had me sign off for the surgery, and took him down, he coudln’t find it anywhere in his chart that he had bi-lateral hernias! He said they would take a scope with video to check before they had to do anymore cutting than necessary. When Xander came back up from surgery he wasn’t even on oxygen! He just looked a little dazed and confused but awake and moving around.
His recovery from this surgery was very quick, the surgeon came up and he had taken photos of Xander’s intestines with the scope and was happy to report that he didn’t see scar tissue from the emergency surgery. (I guess I just wasn’t as excited as the surgeon about the scope photos)
We were moved back into a boarding room and just waiting for him to gain weight so we could go home which we finally did on July 18th. The resident NNP tried to say we couldn’t go because he wasn’t gaining weight, but by then I knew my baby and his experiences and he was still losing fluid from edema after the hernia surgery so you wouldn’t see a weight gain on the scales. He did gain a couple ounces the day we were discharged.
Even though it was the worst birthday for me, the staff at Fairview Ridges and U of MN Fairview Amplatz gave me the best present. They saved Xander’s life once again. Without the nurses at Ridges knowing they couldn’t take care of a baby as sick as Xander and getting him transferred when needed, and the nurses at the U of MN watching him around the clock for deterioration or improvement, we might not have gotten the emergency bedside surgery on that Sunday morning that saved his life.
Happy Nurse’s Week by the way! We Love our NICU nurses! And Happy Mother’s day to all the moms out there!
Here’s to hoping I have a much happier birthday this year.