We stayed above the NICU again last night, we've been calling the Ronald McDonald daily but so far no openings, but I'm personally glad because I want to be right here in case anything happens. As I'm sure many NICU moms can tell you, even across the street is too far early on, and we had been told that the first 48-72 hours after surgery were critical.
On the other hand though, there really wasn't much to do today, no one wants to leave Jonah but on the other hand he doesn't really do anything. He is still on Fentynl so he's completely still and asleep and we've been told not to touch him too much as its better for him to rest.
He did get to go off the oscillating ventilator today, which was a nice step, but like I said, it stuck around the room for several more days, just in case.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Day 4 - Surgery Day
We were still staying above the NICU so even though they told us to be there before 6am to talk to the doctors before surgery, we were still early. My parents had asked if they could be there for the surgery waiting room part, but wanted to give us some time alone with Jonah in the morning. I again told Jonah to be brave and listen to the doctors, I again promised that as soon as he was better we would take him home where it would be a lot more fun. That there was a nursery and a dog and lots of toys waiting for him so he had to be strong and work as hard as he could. The OR nurse asked if I wanted to give him a kiss and I was so grateful, up until then I hadn't been asked and therefore didn't since I wasn't sure of rules because of germs. Later I thought back at the absurdity of everything a NICU mom misses and how easy it is to become NICU-ized where you're used to doing exactly as you're told and nothing else. I recommend asking first (of course) but getting as involved as possibe as quickly as possible and doing as many "normal" things as you can.
I managed not to cry until after they wheeled him away, then I couldn't help it and my husband gave me a hug. The nurse tried to reassure me that the surgeons were wonderful and that it would all be all right but she didn't seem to understand that in my head I knew all that but that it didn't change the fact that my four day old infant was being wheeled off for major surgery and I was scared.
The OR nurse promised to call us in an hour and a half and recommended we wait in the surgical waiting room so we headed down there to wait. After about an hour my parents showed up as scheduled and we waited. The 1.5 hour mark came and went and I had just said that if it got to be 2 hours I was going to ask for an update when the phone rang and they called out asking for the family of Jonah. The nurse didn't have much of an update, they had gotten a slow start and they had actually just begun and she promised a call in another hour. More waiting, reading stupid magazines and making small talk and waiting. One positive thing is that my husband managed to connect with the manager at the job he interviewed for before Jonah was born and accepted an IT Manager position at their company. They agree on a start date in two weeks, enough time to make sure Jonah is stable and hopefully on his way home!
When the OR nurse called a second time she said it was going well and they would be finished in another 30 minutes at which point Dr. Lal would find us. I asked whether the thoroscopic procedure was successful or whether it had moved to being an open surgery and she said thoroscopic. I asked whether they had needed a patch and she said no, there was enough diaphram to pull it closed. Both excellent outcomes! Dr. Lal came out later and pulled us all into a consultation room. He let us know that Jonah had done very well and that he was very happy with how it had gone. He was less able to give us long-term prognosis. I wanted to know whether this would affect him long term, did we think asthma might be a problem, reflux, oxygen dependancy? He said that he didn't think so, but you just never know. He did mention that there was an increased chance for reflux as an infant but that he would probably grow out of it just as a regular baby would. He also explained something that every CDH parent needs to be aware of, or any caregiver of a CDH (or really any) child. If a child vomits green bile, there is a chance that their bowels are malrotated. This is possible with anyone, but there is a higher chance with CDH kids because their bowels have been moved out of alignment when they were in utero and didn't have a chance to settle in just right. If that ever happens, its necessary to take him to the ER immediately as the bowels could die if starved of oxygen too long.
Second thing for a CDH family to know is that when the surgeon tells you that the child may get "sicker" before he gets better, trust the doctor and prepare yourself. I thought he meant that he would look sicker, retain water, feel pain, I somehow didn't prepare myself for the fact that we would need to go up levels of care and onto a new ventilator, that scared me when in retrospect it was exactly what Dr. Lal had warned us about in the consultation room.
We had to wait another hour as they finished closing Jonah up and got him resettled in the NICU. Then we went to see him. As promised, he was knocked out cold when we saw him, but he looked pretty much like I would expect, pretty rough but with teeny tiny incisions and overall pretty good. We decided to go out for a celebratory lunch, after all, every single thing had gone our way, Jonah tolerated the surgery, they did it thoroscopically, they didn't need a patch, it was a success, everything was great, right? We went just down the road to Mayfair and I was enjoying my (low LOW fat still) lunch when about halfway through I got very uncomfortable. What was I doing being so far away? Of course I had my cell phone and the nurses knew to call me, but I wasn't THERE! I was just convinced someting was wrong and I was scared to death. I practically flew back to the NICU (so much for the doctor's orders not to walk too much or too fast so soon) and as I turned off my cell (no cells on in the NICU) and washed my hands and went down to our "Pod" I saw at the end of the hall there were a ton of people in Jonah's "room". As any NICU mother will tell you, more attention is a bad thing. You want your child to be nice and boring...more attention means that something is wrong, the well kids they leave alone to grow and get better.
I looked around for someone to explain what was going on, Children's Hospital of WI is great in that they try to keep the parents very informed/involved. It was explained to me that they thought there was a leak in his lung so they were going to stick a thin tube in his side to see if they got air. They didn't get any, thank goodness. But they did decide to move him up to an oscillating ventilator, which, thanks to my power researching in the 11 days between the diagnosis and his birth, I knew was not a promising sign. Oscillating ventilators are very gentle, but they represent the next level of assistance, so essentially a step in the wrong direction. This machine would give Jonah 600 breaths per minute, making his chest "wiggle" (that's a neonatologist's term for it, not mine). He assured me that this was mostly a precaution, they would rather move Jonah onto it before he really needed it so he didn't have to work too hard. OK, but I really don't like it, I thought, but you know best.
With the oscillating ventilator in the room, there wasn't a whole lot of room for us, we kind of sat just outside the room or stood on the other side of his bed. It was kind of noisy too, and while he was on it there was no chance of us getting to hold him. Luckily he was on the oscillating ventilator only a little over a day and we moved back down to the regular ventilator. They kept it in his room for a few days, the nurse lovingly joked that they were keeping it there to scare poor Jonah, "see what's going to happen if you don't behave" sort of a thing. I knew the truth though, one false step and he'd be back on it quicker than I could blink. Between that and his billy lights for his jauntice (pretty typical for a preemie and the least of our worries) we always joked he looked like he was at the spa, he had little sunglasses on, a "tanning" light, and his chest was vibrating as if getting a massage. It's a joke I've often heard repeated, that's how much it looks like that, plus, it at least makes you feel a bit better as it brings soothing/calming thoughts to mind. I'll see if I can post a video, but for now a photo will have to do.
Overall the surgery day was scarier than anything we'd been though and I wouldn't wish it on anyone. And that's with everything going relatively well except for a few setbacks, I cannot fathom the pain and anguish of parents where the surgery did not go well and my heart goes out to anyone in a similar situation.
I managed not to cry until after they wheeled him away, then I couldn't help it and my husband gave me a hug. The nurse tried to reassure me that the surgeons were wonderful and that it would all be all right but she didn't seem to understand that in my head I knew all that but that it didn't change the fact that my four day old infant was being wheeled off for major surgery and I was scared.
The OR nurse promised to call us in an hour and a half and recommended we wait in the surgical waiting room so we headed down there to wait. After about an hour my parents showed up as scheduled and we waited. The 1.5 hour mark came and went and I had just said that if it got to be 2 hours I was going to ask for an update when the phone rang and they called out asking for the family of Jonah. The nurse didn't have much of an update, they had gotten a slow start and they had actually just begun and she promised a call in another hour. More waiting, reading stupid magazines and making small talk and waiting. One positive thing is that my husband managed to connect with the manager at the job he interviewed for before Jonah was born and accepted an IT Manager position at their company. They agree on a start date in two weeks, enough time to make sure Jonah is stable and hopefully on his way home!
When the OR nurse called a second time she said it was going well and they would be finished in another 30 minutes at which point Dr. Lal would find us. I asked whether the thoroscopic procedure was successful or whether it had moved to being an open surgery and she said thoroscopic. I asked whether they had needed a patch and she said no, there was enough diaphram to pull it closed. Both excellent outcomes! Dr. Lal came out later and pulled us all into a consultation room. He let us know that Jonah had done very well and that he was very happy with how it had gone. He was less able to give us long-term prognosis. I wanted to know whether this would affect him long term, did we think asthma might be a problem, reflux, oxygen dependancy? He said that he didn't think so, but you just never know. He did mention that there was an increased chance for reflux as an infant but that he would probably grow out of it just as a regular baby would. He also explained something that every CDH parent needs to be aware of, or any caregiver of a CDH (or really any) child. If a child vomits green bile, there is a chance that their bowels are malrotated. This is possible with anyone, but there is a higher chance with CDH kids because their bowels have been moved out of alignment when they were in utero and didn't have a chance to settle in just right. If that ever happens, its necessary to take him to the ER immediately as the bowels could die if starved of oxygen too long.
Second thing for a CDH family to know is that when the surgeon tells you that the child may get "sicker" before he gets better, trust the doctor and prepare yourself. I thought he meant that he would look sicker, retain water, feel pain, I somehow didn't prepare myself for the fact that we would need to go up levels of care and onto a new ventilator, that scared me when in retrospect it was exactly what Dr. Lal had warned us about in the consultation room.
We had to wait another hour as they finished closing Jonah up and got him resettled in the NICU. Then we went to see him. As promised, he was knocked out cold when we saw him, but he looked pretty much like I would expect, pretty rough but with teeny tiny incisions and overall pretty good. We decided to go out for a celebratory lunch, after all, every single thing had gone our way, Jonah tolerated the surgery, they did it thoroscopically, they didn't need a patch, it was a success, everything was great, right? We went just down the road to Mayfair and I was enjoying my (low LOW fat still) lunch when about halfway through I got very uncomfortable. What was I doing being so far away? Of course I had my cell phone and the nurses knew to call me, but I wasn't THERE! I was just convinced someting was wrong and I was scared to death. I practically flew back to the NICU (so much for the doctor's orders not to walk too much or too fast so soon) and as I turned off my cell (no cells on in the NICU) and washed my hands and went down to our "Pod" I saw at the end of the hall there were a ton of people in Jonah's "room". As any NICU mother will tell you, more attention is a bad thing. You want your child to be nice and boring...more attention means that something is wrong, the well kids they leave alone to grow and get better.
I looked around for someone to explain what was going on, Children's Hospital of WI is great in that they try to keep the parents very informed/involved. It was explained to me that they thought there was a leak in his lung so they were going to stick a thin tube in his side to see if they got air. They didn't get any, thank goodness. But they did decide to move him up to an oscillating ventilator, which, thanks to my power researching in the 11 days between the diagnosis and his birth, I knew was not a promising sign. Oscillating ventilators are very gentle, but they represent the next level of assistance, so essentially a step in the wrong direction. This machine would give Jonah 600 breaths per minute, making his chest "wiggle" (that's a neonatologist's term for it, not mine). He assured me that this was mostly a precaution, they would rather move Jonah onto it before he really needed it so he didn't have to work too hard. OK, but I really don't like it, I thought, but you know best.
With the oscillating ventilator in the room, there wasn't a whole lot of room for us, we kind of sat just outside the room or stood on the other side of his bed. It was kind of noisy too, and while he was on it there was no chance of us getting to hold him. Luckily he was on the oscillating ventilator only a little over a day and we moved back down to the regular ventilator. They kept it in his room for a few days, the nurse lovingly joked that they were keeping it there to scare poor Jonah, "see what's going to happen if you don't behave" sort of a thing. I knew the truth though, one false step and he'd be back on it quicker than I could blink. Between that and his billy lights for his jauntice (pretty typical for a preemie and the least of our worries) we always joked he looked like he was at the spa, he had little sunglasses on, a "tanning" light, and his chest was vibrating as if getting a massage. It's a joke I've often heard repeated, that's how much it looks like that, plus, it at least makes you feel a bit better as it brings soothing/calming thoughts to mind. I'll see if I can post a video, but for now a photo will have to do.
Overall the surgery day was scarier than anything we'd been though and I wouldn't wish it on anyone. And that's with everything going relatively well except for a few setbacks, I cannot fathom the pain and anguish of parents where the surgery did not go well and my heart goes out to anyone in a similar situation.
Tuesday, April 28, 2009
Day 3 - Preparing ourselves for surgery
Well, it's official, surgery tomorrow! We're such a ball of emotions. Happy that the doctors say he's stable enough to do surgery so soon, excited to be getting on with the process, scared to death about the whole thing and a thousand other feelings running through our minds.
The surgeon, Dr. Lal, came and spoke to us today and go over the different potential scenarios. Whether he'll be able to do it thoroscopically (best case) or have to do an open incision. Whether he'll need to use a gortex patch or whether there will be enough of Jonah's own diaphram to close it (best case). How much lung will there be on the left side and how much organs are up in the chest. We met the anesthesiologist as well and his fellow. They plan to use Fentynal during the surgery and afterwards to keep him sedated so he doesn't fight the ventilator. They also started his photo therapy under the billy lights as he is marginally jaundice. I'll include a photo of him under these lights a bit later, I didn't take one the first day as we still didn't have a camera until nighttime. My husband made the trip home to cut the grass, collect the mail and get the maternity bag we packed (but hadn't started carrying with us in the car yet).
One nice thing that the nurses did that ended up putting me to tears was insist that they would let my husband and I hold him before surgery. They insisted that after surgery it would be too painful for him but I read a completely different message into it. For right or wrong, I read that they were giving us a chance to hold him...in case he didn't make it. It brought me to tears and I was all by myself that day with him so I just held him and cried and cried. I told Jonah to be strong and do exactly what the surgeon and doctors asked him to do. I promised him that it wouldn't always be like this, wires and tubes and pain, that there was a beautiful home waiting for him when we got out of here. My husband didn't get back to the hospital till after 9pm but as soon as he got there we asked the nurses to let him hold Jonah and took the first of many photos on our camera. Below is Jonah with his dad holding him for the first time on Day 3. You can see that its a bit nerve wracking at first, but the nurses were supportive of it and once we calmed down Jonah usually went to sleep and satted very well (his numbers stayed constant or improved a bit).
The surgeon, Dr. Lal, came and spoke to us today and go over the different potential scenarios. Whether he'll be able to do it thoroscopically (best case) or have to do an open incision. Whether he'll need to use a gortex patch or whether there will be enough of Jonah's own diaphram to close it (best case). How much lung will there be on the left side and how much organs are up in the chest. We met the anesthesiologist as well and his fellow. They plan to use Fentynal during the surgery and afterwards to keep him sedated so he doesn't fight the ventilator. They also started his photo therapy under the billy lights as he is marginally jaundice. I'll include a photo of him under these lights a bit later, I didn't take one the first day as we still didn't have a camera until nighttime. My husband made the trip home to cut the grass, collect the mail and get the maternity bag we packed (but hadn't started carrying with us in the car yet).
One nice thing that the nurses did that ended up putting me to tears was insist that they would let my husband and I hold him before surgery. They insisted that after surgery it would be too painful for him but I read a completely different message into it. For right or wrong, I read that they were giving us a chance to hold him...in case he didn't make it. It brought me to tears and I was all by myself that day with him so I just held him and cried and cried. I told Jonah to be strong and do exactly what the surgeon and doctors asked him to do. I promised him that it wouldn't always be like this, wires and tubes and pain, that there was a beautiful home waiting for him when we got out of here. My husband didn't get back to the hospital till after 9pm but as soon as he got there we asked the nurses to let him hold Jonah and took the first of many photos on our camera. Below is Jonah with his dad holding him for the first time on Day 3. You can see that its a bit nerve wracking at first, but the nurses were supportive of it and once we calmed down Jonah usually went to sleep and satted very well (his numbers stayed constant or improved a bit).
Monday, April 27, 2009
Day 2
Today I was discharged so we put everything in the car, later on the NICU told us that they had a few bedrooms to stay in above the NICU while we were waiting for the Ronald McDonald house to have a vacancy. We met several of the doctors but I'm afraid I just don't remember much about that first few days. I know every day we usually saw the neonatologist and then a fellow who rounded with a whole group of medical students (which was surreal, reminded me of a TV show). We saw surgery on certain days and respiratory several times a day while Jonah was intubated (on a ventilator) and then less often as he was weaned to CPAP and a nasal cannula. They began talking about surgery today, saying maybe tomorrow or the next day depending on the surgical schedule.
Today I got to hold Jonah for the first time! The nurse is the one that offered it, I know it seems like this varies a lot depending on the hospital you're in. For us, it was less than 48 hours later, but again, I have no real photos as we didn't have a camera. This is when they tried to find the one the NICU has but it was already checked out. It was so wonderful but also very scary and stressful too. With all of those wires and tubes, it has to be a very orchestrated event. They had me sit in a chair right next to the warmer, then two nurses had to get all of the wires and tubes just right and set him in my lap and then tape all of the tubes in place around me in the chair. I was so appreciative of being able to though, it would have been easy for the NICU nurses to say it was too upsetting to move him but once he got snuggled in he was pretty happy...and I definitely was!
Today I got to hold Jonah for the first time! The nurse is the one that offered it, I know it seems like this varies a lot depending on the hospital you're in. For us, it was less than 48 hours later, but again, I have no real photos as we didn't have a camera. This is when they tried to find the one the NICU has but it was already checked out. It was so wonderful but also very scary and stressful too. With all of those wires and tubes, it has to be a very orchestrated event. They had me sit in a chair right next to the warmer, then two nurses had to get all of the wires and tubes just right and set him in my lap and then tape all of the tubes in place around me in the chair. I was so appreciative of being able to though, it would have been easy for the NICU nurses to say it was too upsetting to move him but once he got snuggled in he was pretty happy...and I definitely was!
Sunday, April 26, 2009
The First 24 Hours
The first 24 hours are pretty critical for a CDH baby. There's just so much that they don't know while the baby is still in utero and once they're born the NICU has to get them stable and find out all sorts of things so they can determine the best option for surgery. It's also sometimes a honeymoon period though, giving parents false hope. In Jonah's case we were blessed that they thought he was doing wonderfully but we were still scared. In this case my research was very helpful as I knew many of the things I would see in the NICU.
Here is a photo of our darling boy when he was only about 9 hours old, I'll explain the different things attached to him as I remember them since they are pretty typical of what you'll see for a CDH baby the first day with the possible exception of a ventilator-type or the addition of ECMO which thankfully we never needed. Starting at the top is his cerebral (head) monitor that measures the oxygen level in his head. The tube in his mouth is his ventilator tube going off to the right side of the photo, to deliver oxygen to his lungs and the peachy/orange guard around it is to keep it in place and at the right depth. You'll notice there's also a tube going from his mouth to above his head, this is going to a suction tube that keeps his stomach compressed so it doesn't push on his lung. You can't see them, but there were stickers on his chest for measuring breathing and heartrate and another for temperature, you can see what they're plugged into off to the right of the picture, where there's three plugs, one white, one black and a green just out of the picture. The things on his right hand and left foot are called Pulse Oximeters (Pulse-Ox or POX) and they measure oxygen saturation levels, it's a tiny red light on a stretchy band that goes around their hand/foot and then the blue/white spongy thing wraps around that to keep it in place. This was the primary number we watched until Jonah went home. In his belly button you can see thin white tubes, this is how they feed him TPN solution (Total Parenteral Nutrition=his nutritional needs) and also to take blood gases to measure the Jonah's oxygen and carbon dioxide level in his blood. The syringe you see of to the left is heparin to flush out the line whenever blood is taken so that it doesn't clot or saline, I can't remember which at that point.
Now I'm aware that every NICU is different but don't be too surprised if they have limited visitation of some sort. Ours allowed parents and grandparents only (you could substitute grandparents for someone else if you didn't have any nearby). This was to protect the babies there because its critical that they don't get sick. It was hard to have our siblings and close friends visit us and not be able to see Jonah but we knew it was for the best as there were 40 children in the NICU times 6 visitors plus all the doctors and nurses was already a lot of potential for contamination. The letter they hung up said they will reevaluate it after flu season was over, but they didn't lift it all summer to my knowledge but with H1N1/swine flu going around everyone was a little on edge. I felt mostly for the siblings of the children in there and their parents, how hard on them.
One piece of advice I'll offer is to take lots of photos. Thank goodness my mom came and took this one as we didn't have a camera with us since we weren't expecting to deliver and these are the very first photos of Jonah and it was already the next day. And really, this is the best he looked for the next 2 weeks, still all pink and not dry skin and not retaining water. I really regret not taking more photos, it's probably my biggest regret of something I could have changed, I know most hospitals (CHOW included) have a camera somewhere if you ask for one, it was checked out the one time we tried but we should have tried harder as we missed most of his first week except when grandma came to visit.
My mom took these photos that first morning but then had to leave as I had a baby shower that afternoon, we thought planning it 6 weeks in advance was far enough. My mother-in-law was throwing it and she decided to have it anyways. My best friend from the night before was already going so she could tell the "going into labor" story and my mom opened the presents while my mother-in-law took pictures to show me in the NICU later.
At the bottom down here I'll put a photo of the monitor screen in our NICU, click on it to make it larger (this is much much later, so don't be surprised if the numbers are different for your baby). The numbers on the right are Jonah's, the ones on the left are another patient's as we were sharing a nurse, this way she could see both children's stats if she was in either "room". So, from the top is:
- Green = heartrate (137) - target rate of 80-200
We very seldom had a problem with this, but when his heart rate dropped it was called a "Brady". - Yellow = respiration rate (79) - target rate of 15-100
This was kind of hokey according to several nurses as if the baby isn't laying just right or was moving around it would go off as a false alarm - but better safe than sorry. - Blue = Oxygen Saturation (96) - target rate of 90-101
This is the one that we had most problems with, we alarmed all the time! THIS is the number I watched all the time. - White = Blood Pressure (92/48) - target rate of 30-90
We had some blood pressure problems right after the first surgery, but it was quickly resolved so I don't know too much about this one, after a while they went to only measuring this at every 3 hour assessment so this was a static number. - Last Box is any alarms that have gone off. You can maybe see that ours were usually "desats" (meaning his oxygen saturation dropped below 90%.
Saturday, April 25, 2009
Here Comes Jonah
We arrived at the hospital probably like most other couples having a baby, all flustered and not knowing where to go. We went in the main entrance at Children's and were directed this way and that till we got to the Labor & Delivery area. There we were told to wait in the waiting room, and we were wondering if they understood that this wasn't a typical labor. My husband went to explain things while still trying to be calm and reasonable and they came to get me shortly after. The nurse started to take me to the assessment room but once she saw my jeans, she decided we could just go to a room :) Our friends were hanging out and my parents were on the way, so much for the private labor I had planned.
On the way to the hospital if I concentrated really hard, I could feel the contractions. By the time we checked in and got all hooked up to monitors, the nurse told me the contractions were 3 minutes apart and strong. I could feel them by then, but they didn't hurt, not really. This was about an hour and a half after my water broke we think, we can't seem to put together the timeline but we're thinking we went for dinner fairly early maybe a little before six, waited for a table, and ordered and ate salad before my water broke then the drive takes about 45 minutes so we're thinking we actually got to Children's around 7? That means it was approximately 5 hours between my water breaking and Jonah's arrival ~ wow, a heck of a lot quicker than the 12-24 hours my childbirth class kept insisting was typical for a first time mom.
They were now aware of Jonah's condition thanks to a wonderful delivery nurse who called the NICU and got things started since I was concerned -- unfortunately I can not remember her name for the life of me and I feel bad because I kind of got the impression that the delivery doctor was upset with her for "going over her head" so to speak and calling the NICU before she had assessed me. But I just wanted all hands on deck and ready in case Jonah arrived quickly, as it turned out, its a good thing because he did come rather quickly. Because they couldn't contact Dean for any of my hospital records and ultrasounds at that time of night, they brought in a portable ultrasound machine. They told me that if he was breech or my placenta was in the way, they were going to deliver him C-section. Luckily both of those things were fine and we were ready to go.They were trying to minimize internal exams since my water had already broken but when I was physically sick, the doctor decided she'd better check as apparently that's a sign that things are moving along (now why don't they tell you THAT in prenatal classes?!?). Turns out, I was already at seven centimeters! Wow, no wonder the contractions were hurting by this point huh? They asked if I wanted any pain medications and originally I told them that I wasn't sure, I was just going to see how it went since I have a pretty high pain tolerance but had never had a baby before so couldn't really know what it was like. They asked again at this point and the nurse recommended at least talking to the anesthesiologist as signing the paperwork so I could be ready if I decided I did want it. They called the anesthesiologist and he explained all the different options and the risks involved. By the time he came and did his whole spiel (he wouldn't talk while I was actually having a contraction so it took a good 30 minutes for the whole process) things were hurting a lot and I thought I still had a long way to go so I asked for an epidural. He left to get all set up and I got sick again, so the nurse checked my progress and announced I was at 10cm and ready to have the baby! She said this just as the anesthesiologist came wheeling into the room with his little cart, he just looked up, turned his cart around and went back out of the room. My husband thought that was the funniest thing ever! At that point the whole room flooded with people, I stopped counting in my mind around 14, the doctor and medical student, anestesiolgist (who what, wanted to stick around for the show?!?), the nurse for me, two medical staff that stood in the back, the NICU neonatologist and 5 nurses for Jonah, it was a regular three ring circus, and everyone was standing around watching me labor so they could do what they needed to do.
The actual pushing wasn't too long, about a dozen pushes (or probably only 8 after I figured out how to push) and Jonah was born! 6lbs 6oz and 18-3/4 inches long, very good size for 6 weeks premature! We heard a short cry before they intubated him and got him set to be transferred to the NICU. I knew from all my crazy research that that was a good sign. They did ask if my husband wanted to cut the cord and wheeled him over so I could take a quick peek into the isolette but we were so concerned about getting him where he needed to go that we didn't really savor the experience. After they took Jonah they finished up with me and called with an update one hour later. No absolutes yet, but things look pretty good. We went to our regular room while they cleaned up and got Jonah settled. We had him just before midnight and it was nearly 2am by the time we got to see him but I know it could be so much worse so I'm grateful for all the nurses that were wonderful that first night. We were back in our room by 3:30am, leaving Jonah to recuperate and us to catch a bit of sleep before morning. Once I got to see Jonah I was much happier, this action was so much better than the waiting and worrying and I felt oddly pretty calm considering the circumstances that first night.
Date Night Interrupted
On April 25th we travelled about an hour to go out with our best friends who live in Racine. We really needed a "normal" night out to get our minds on something other than dwelling on what might be. We had our appointment at Children's Hospital that upcoming Thursday and had spent the whole past weekend hibernating at home together.
So we arrived and they're playing Wii Guitar Hero and WoW. We didn't have any firm plans but we knew we'd go get something to eat first, they put me in charge of picking the place since my diet was the most restrictive with the gallstones. I looked up a few places online and found that Olive Garden had an Apricot Chicken that looked good and was only 4 grams of fat (I tried to stay under five per meal). I thought I could have that and salad and as long as I could stay away from their yummy breadsticks, I'd be OK. Little did we know that I probably was already contracting when we left for dinner.
I had commented to my husband that when I woke up that morning Jonah was sitting more in the middle, versus on the side curled up like he had been for weeks. But I really felt nothing other than that, even with the benefit of hindsight, I just had no idea. I hung out with my mom that day, curled up on my friend's couch, and didn't have any problem standing and waiting almost an hour for a table. I never had a hint until after the salad I felt, um, something. My first thought was that I had peed my pants a little, gross, but I had heard that it happened to pregnant women towards the end of pregnancy. My eyes got wide and I excused myself to the restroom. As I was walking through the crowd waiting for their own tables, it was getting worse and worse and by the time I got to the restroom it was apparent that my water had broke. I just sat there thinking OH MY GOODNESS!!! Eventually my girlfriend came looking for me, sent by my husband and I told her what had happened. Her exact words are something we still laugh at to this day "Are you sure"...to which I pointed at my now absolutely sopping jeans and said, um, yes, I'm quite sure. She told me it would be OK and I said "It's too soon". I knew that especially for CDH children, time for the lung to grow in utero is critical. So I was freaking out that I was still six weeks away from my due date and that I hadn't even had my appointment at Children's Hospital yet. I wasn't registered, I didn't have a doctor assigned or a surgeon for that matter, and the Fetal Concerns Coordinator had told me that if I went into labor before registration, that I should go to Madison instead of to CHOW (Children's Hospital of Wisconsin)...yes, I really did ask, that's how much of a planner I am.
But, as anyone with a child knows, YOU are not in charge. So, my girlfriend ran to get my purse/cell phone and tell the guys we had to leave. She brought me my purse and I dialed the Fetal Concerns Coordinator, and of course got voicemail (it's 7pm on a Saturday night for heaven's sake). I waded through the maze of voicemail prompts and eventually found a live person to talk to, who told me to just show up and let them know the situation, she was not helpful. I also called my mom, who wouldn't pick up and who was, unbeknownst to me, on the other line with my husband. We decided that our friends would drive us to the hospital to shave off the 15 minutes extra it would take for them to drive us to their house where we had left our vehicle. I sat on my husband's jacket on the way up there as a sad and futile attempt not to leak all over their car and we made a mostly silent journey up to Milwaukee, punctuated every few minutes by someone asking me if I felt contractions or making a lame joke. Our driver nearly bit off the head of any driver that got in his way but it felt like it took forever. Luckily we knew at least how to get to the hospital, we had done a dry run the week before (yes, for the hundredth time, I AM a planner!). I didn't say this at the time, but now that I know everything is fine with Jonah, I do honestly believe the good Lord knew I was worrying myself sick and decided it was time for Jonah to show up and let us know he was going to be just fine. I still wish he wouldn't have been premature, but I do believe it was part of the plan and I'm thankful for that.
Friday, April 24, 2009
Amnio Results
They called three days later with the good news that the FISH (Fluorescent in-situ hybridization) rapid but limited results were back and that they showed no anomolies. These results cover 95% of all chromosonal abnormalities including Trisomy 18 and Down's Syndrome, the two that we were most concerned about. They also confirmed it was a boy, though with the number of ultrasounds we had had by now, there was little doubt. We were elated by the good news, although oddly enough we had pretty much known that this was the case and should have just trusted our instinct.
The full amniocentesis results didn't come back until April 24th, the following Friday and 10 days after the sample was taken. They also confirmed that there was no abnormalities, which was a wonderful reassurance to have, regardless of how confident we felt about this particular issue.
The full amniocentesis results didn't come back until April 24th, the following Friday and 10 days after the sample was taken. They also confirmed that there was no abnormalities, which was a wonderful reassurance to have, regardless of how confident we felt about this particular issue.
Monday, April 20, 2009
Shellshocked and Scared
We left the appointment up in Madison shell-shocked. I am the analyzing kind (guess that's why I'm an analyst by trade) so I read all of the information the genetics counselor gave us on the way home. I had asked my boss to cover for me that night as I have to do after-hours website validation sometimes and I knew it was going to be a tough day. It didn't help that this was one of the busiest times I've ever had at work and I was working 80 hours a week and still not keeping up. Taking off of work wasn't an option, but that's probably for the best as my husband and I just spent every night staring at each other and trying in our ways to come to terms with the reality. My husband stayed distant, that's just his way of processing. He was unwavering in his conviction that Jonah was going to be fine though, he assured me morning, noon and night as I cried and cried and cried some more.
To add to the stress my husband lost his job between us makng the Madison appointment and going to it. They had been cutting 10-20 employees each month for a while and they're not a huge company, so we knew it was only so long before they decided they needed fewer IT staff, and my husband, newest employee in the department, was a natural choice. He was trying to volunteer wherever possible but his number just came up, poor timing and all. Luckily we had saved for the possibility and I carried our insurance, so we knew we'd be fine for a few months but he got started on the job hunt immediately. I can't imagine the strain he felt at home each day and going on interviews while we had this hanging over us. Luckily his boss wrote him a glowing recommendation and his boss's boss put out a few feelers for him.
I dealt with my feelings by devouring everything I could find online. I'm naturally someone who wants to know and understand everything so I read medical journals and hospital FAQ pages and blogs. I read so that I would know whether anything the doctor said was a good indication or a bad sign, so I would know where the best place to deliver was, to know what the darn percentages that I didn't want to know meant for us. I read a lot on the CHERUBs website, exclusively for Congenital Diaphragmatic support. What I quickly found though, was that most of the blogs and people who participated in CDH support groups were the ones that had lost children to CDH or had ongoing challenges. Which makes sense, you're much more likely to get involved when it's something you have lost a loved one to or are dealing with on a daily basis. But when a good friend told me to stop reading these and that I was driving myself crazy I made a concious effort to find a living CDH baby's blog to read. I found many, but the one I most religiously followed was Kaden's. He had been born and was still in the hospital when we received our diagnosis and seemed to have many similarities with Jonah so I felt very connected to their family, though I didn't contact them. I hope they will not mind me posting a link to their site, this is the first post I read when we received the diagnosis, then I went back and read everything before it and read it every day up until Jonah was born. I learned so much on what to expect in the NICU from them. Sadly Kaden got his angel wings a few days before Jonah was born, which made me sad yet again, was there NO good news in this awful birth defect?!? Was there nothing you could do, how helpless! We prayed a lot and held on to each other a lot, we buried ourselves in work and wandered around the house like zombies for 11 days. Then we contacted our best friends, who happen to live in Racine and also happen to be expecting, and asked them for a fun night out. Of course, we had no idea what we wanted to do, since I still couldn't eat any fat (due to the gallstones) and had a weight restriction of 10 pounds (due to the marginal placenta previa, which they couldn't seem to decide whether it had moved up or not). We didn't want to talk about the diagnosis, we didn't want to do anything good for us, we just needed to get out! So we made a date for that upcoming Saturday, April 25th...which also happens to be Jonah's birthday (yep, you know where this is headed).
To add to the stress my husband lost his job between us makng the Madison appointment and going to it. They had been cutting 10-20 employees each month for a while and they're not a huge company, so we knew it was only so long before they decided they needed fewer IT staff, and my husband, newest employee in the department, was a natural choice. He was trying to volunteer wherever possible but his number just came up, poor timing and all. Luckily we had saved for the possibility and I carried our insurance, so we knew we'd be fine for a few months but he got started on the job hunt immediately. I can't imagine the strain he felt at home each day and going on interviews while we had this hanging over us. Luckily his boss wrote him a glowing recommendation and his boss's boss put out a few feelers for him.
I dealt with my feelings by devouring everything I could find online. I'm naturally someone who wants to know and understand everything so I read medical journals and hospital FAQ pages and blogs. I read so that I would know whether anything the doctor said was a good indication or a bad sign, so I would know where the best place to deliver was, to know what the darn percentages that I didn't want to know meant for us. I read a lot on the CHERUBs website, exclusively for Congenital Diaphragmatic support. What I quickly found though, was that most of the blogs and people who participated in CDH support groups were the ones that had lost children to CDH or had ongoing challenges. Which makes sense, you're much more likely to get involved when it's something you have lost a loved one to or are dealing with on a daily basis. But when a good friend told me to stop reading these and that I was driving myself crazy I made a concious effort to find a living CDH baby's blog to read. I found many, but the one I most religiously followed was Kaden's. He had been born and was still in the hospital when we received our diagnosis and seemed to have many similarities with Jonah so I felt very connected to their family, though I didn't contact them. I hope they will not mind me posting a link to their site, this is the first post I read when we received the diagnosis, then I went back and read everything before it and read it every day up until Jonah was born. I learned so much on what to expect in the NICU from them. Sadly Kaden got his angel wings a few days before Jonah was born, which made me sad yet again, was there NO good news in this awful birth defect?!? Was there nothing you could do, how helpless! We prayed a lot and held on to each other a lot, we buried ourselves in work and wandered around the house like zombies for 11 days. Then we contacted our best friends, who happen to live in Racine and also happen to be expecting, and asked them for a fun night out. Of course, we had no idea what we wanted to do, since I still couldn't eat any fat (due to the gallstones) and had a weight restriction of 10 pounds (due to the marginal placenta previa, which they couldn't seem to decide whether it had moved up or not). We didn't want to talk about the diagnosis, we didn't want to do anything good for us, we just needed to get out! So we made a date for that upcoming Saturday, April 25th...which also happens to be Jonah's birthday (yep, you know where this is headed).
Tuesday, April 14, 2009
Loooong Day of Doctor's Appointments & a New Diagnosis
Our next appointment up in Madison was going to be a marathon day. April 14th, 2009. My husband had to take off of work and he didn't have much vacation, plus, they had been doing staff reductions every few weeks at his work so we weren't keen to take any unnecessary days off, so we asked to fit as many into a day as we could. We were scheduled to meet with a pediatric cardiologist, our perinatologist, the pediatric surgeon, the neonatologist and take a tour of the NICU.
First up was Dr. Weinhaus, the cardiologist. Jonah's heart looked pushed off to the right in the last ultrasound and babies with Duodenal Atresia often have heart problems, so they wanted to get that checked out (turns out that babies with CDH often do too, so it ended up being a good thing we had it done). He confirmed that all four chambers of Jonah's heart looked good but said that the heart was indeed pushed towards the center of his chest. He also saw something that he didn't like the looks of, it looked like something was up in Jonah's chest cavity, but he said he'd let Dr. Davidson, our perinatologist and next stop, look at that.
The perinatoligist looked at Jonah on the 4D ultrasound and now with the new way he was laying she said that she believed he had a Congenital Diaphragmatic Hernia. We asked her whether this was better or worse than a Duodenal Atresia and she said it was more common, but also more serious. She had us go back to talk to the genetics counselor and we cancelled the rest of the appointments for the day since now we couldn't even deliver at Madison, we had to go to Children's Hospital in Milwaukee since they were the only hospital in the area with ECMO, a machine Jonah might need to act as his lungs temporarily in a worst case scenario.
With this new diagnosis I'm ashamed to say I started to shut down. I cried openly in the genetics counselor's office as she told us that this was a condition where a hole in the diaphragm allowed the intestine, stomach, spleen and other organs to move up into the chest cavity, pushing on the lung and not allowing it to develop. She talked compassionately but candidly about the fact that this condition has a 50% mortality rate. Oh my goodness, you're giving my baby 50/50 odds on whether he's going to make it?!? She also told us that if he did make it, he may need a feeding tube or oxygen long term or have asthma or other life-long problems. She also told us that the condition was associated with chromosonal abnormalities. We had talked about this already since the old diagnosis (you know, the one where I was upset that there was a 5% mortality rate?!?) had a high correlation (approx 30%) with Down's syndrome. This condition was more closely correlated with Trisomy 18, there was a smaller chance (I believe 5-10%) but Trisomy 18 is much more serious, it is nearly always a death sentence, especially for boys with less than 10% of all babies making it to their first birthday. There were just so many statistics flying at us the last few weeks and especially today, that my husband and I eventually just told people to stop giving us "one in so many" numbers...every time we heard that, we were the one! We later heard an excellent quote from one of the pulmonary staff, "one in so many doesn't mean anything, if you're the one, its 100% for you, which is all that matters".
At this point, I just wanted as much information as possible. I agreed to do the amniocentesis, which my husband was hoping we would wait on till the next appointment. But I wanted to know if there were any chromosonal abnormalities and the genetics counselor urged us not to wait too long as the results take around 2 weeks to get back. Dr. Davidson fit us in about an hour later, which was very kind of her. The procedure itself didn't hurt much, they did it right in the ultrasound room with an ultrasound tech, two nurses and the doctor. She had me lay down, checked the position of the baby with the ultrasound, marked my stomach, made it sterile and used a needle to extract a sample. I made sure not to look at the needle but my husband said it was very long and very thin and the fluid they extracted sure looked like a lot since they said they only needed a little. I asked what the window was for premature labor (given our great history with small chances) and was told the next three days generally but if I felt anything to let them know. I began to pray in earnest that I could handle whatever we were going to encounter in two months. I didn't really think that Jonah had Trisomy 18 as there are often symptoms they can see on the ultrasound, but I was scared to death of Down's Syndrome and the CDH, plus they couldn't rule out that he had a Duodenal Atresia on top of the CDH and possible chromosonal abnormalities.
First up was Dr. Weinhaus, the cardiologist. Jonah's heart looked pushed off to the right in the last ultrasound and babies with Duodenal Atresia often have heart problems, so they wanted to get that checked out (turns out that babies with CDH often do too, so it ended up being a good thing we had it done). He confirmed that all four chambers of Jonah's heart looked good but said that the heart was indeed pushed towards the center of his chest. He also saw something that he didn't like the looks of, it looked like something was up in Jonah's chest cavity, but he said he'd let Dr. Davidson, our perinatologist and next stop, look at that.
The perinatoligist looked at Jonah on the 4D ultrasound and now with the new way he was laying she said that she believed he had a Congenital Diaphragmatic Hernia. We asked her whether this was better or worse than a Duodenal Atresia and she said it was more common, but also more serious. She had us go back to talk to the genetics counselor and we cancelled the rest of the appointments for the day since now we couldn't even deliver at Madison, we had to go to Children's Hospital in Milwaukee since they were the only hospital in the area with ECMO, a machine Jonah might need to act as his lungs temporarily in a worst case scenario.
With this new diagnosis I'm ashamed to say I started to shut down. I cried openly in the genetics counselor's office as she told us that this was a condition where a hole in the diaphragm allowed the intestine, stomach, spleen and other organs to move up into the chest cavity, pushing on the lung and not allowing it to develop. She talked compassionately but candidly about the fact that this condition has a 50% mortality rate. Oh my goodness, you're giving my baby 50/50 odds on whether he's going to make it?!? She also told us that if he did make it, he may need a feeding tube or oxygen long term or have asthma or other life-long problems. She also told us that the condition was associated with chromosonal abnormalities. We had talked about this already since the old diagnosis (you know, the one where I was upset that there was a 5% mortality rate?!?) had a high correlation (approx 30%) with Down's syndrome. This condition was more closely correlated with Trisomy 18, there was a smaller chance (I believe 5-10%) but Trisomy 18 is much more serious, it is nearly always a death sentence, especially for boys with less than 10% of all babies making it to their first birthday. There were just so many statistics flying at us the last few weeks and especially today, that my husband and I eventually just told people to stop giving us "one in so many" numbers...every time we heard that, we were the one! We later heard an excellent quote from one of the pulmonary staff, "one in so many doesn't mean anything, if you're the one, its 100% for you, which is all that matters".
At this point, I just wanted as much information as possible. I agreed to do the amniocentesis, which my husband was hoping we would wait on till the next appointment. But I wanted to know if there were any chromosonal abnormalities and the genetics counselor urged us not to wait too long as the results take around 2 weeks to get back. Dr. Davidson fit us in about an hour later, which was very kind of her. The procedure itself didn't hurt much, they did it right in the ultrasound room with an ultrasound tech, two nurses and the doctor. She had me lay down, checked the position of the baby with the ultrasound, marked my stomach, made it sterile and used a needle to extract a sample. I made sure not to look at the needle but my husband said it was very long and very thin and the fluid they extracted sure looked like a lot since they said they only needed a little. I asked what the window was for premature labor (given our great history with small chances) and was told the next three days generally but if I felt anything to let them know. I began to pray in earnest that I could handle whatever we were going to encounter in two months. I didn't really think that Jonah had Trisomy 18 as there are often symptoms they can see on the ultrasound, but I was scared to death of Down's Syndrome and the CDH, plus they couldn't rule out that he had a Duodenal Atresia on top of the CDH and possible chromosonal abnormalities.
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