HOME!

We came home yesterday afternoon!  Jansen had gained more weight overnight and a doctor that we hadn't seen before came around in the morning and said that the community nurses could come check his chest incision at home and since he had gained weight 4 days in a row we could go home. The other doctor that had told us we had to stay until Friday came over later in the day and begrudgingly told us that her colleague decided we could go so they would write up a discharge letter. Hurray! So good to come home, exactly 3 weeks after I left.  Now the real fun of having a newborn and a 2 year old starts. :)

Purgatory

Yep, still here at Addenbrookes. And likely will be until Friday. Turns out it's hard to prove documented weight gain in only 2 days. And Jansen's swabs from GOSH grew some bacteria so now we have to wait to see if the swabs from Addenbrookes grow the same bacteria and if his wound seems infected. We'll know about the swabs tomorrow but the dietician wants to wait until Friday to make sure Jansen is feeding well and gaining weight. So here we are stuck. A step away from the joy of home but forced to wait a bit longer.
Last night I had 3 neighbors with babies that all screamed through the night and were connected to alarms that were going off regularly and so I got very little sleep. I know sleep deprivation does nothing to improve morale, so I'm trying to stay positive. At my good moments I realize that I am here with a healthy baby boy who is feeding well, sleeping well and we are close enough to home for regular visits from daddy and Arie. Praise God, what a gift! Then there are those bad moments when I am DYING to go home, sleep in my bed, shower in my shower, see my precious almost 2 year old who seems older and bigger every time he visits, eat vegetables that aren't cooked to death, and get up at night when only MY baby cries. Those moments are currently bringing me to tears on a regular basis.
Last leg of the journey. God give me strength to finish well.

Transferred!!

Friday night we finally got our wish and were sent from Great Ormond Street to Addenbrookes. We got to Addenbrookes about 9pm.  Would have been sooner, but the patient transport car that showed up to take us came with a forward facing car seat in it. After having to quite obstinately tell the driver that I was not about to transport my 2 week old son recovering from heart surgery in a forward facing car seat he went back to his headquarters and got the correct car seat and came back.
Honestly my life has not changed terribly much from Great Ormond Street, as I'm still living in a small cubicle with Jansen, rarely getting outside or even out of the ward. The major bonus is that Ryan can come and go much more easily. Sunday he came in the morning and then went home in the afternoon, picked up Arie and brought him back so I could see him and eat dinner with him, then brought him home for bedtime and then came back in the evening.  So much better than him having to spend 4 hours and a small fortune commuting every day and leaving Arie from early morning to late night. The other major change in my life in the last couple of days is that Jansen is feeding wonderfully now!  Praise God! So instead of waking up at night, trying to get him to eat for a half hour, doing a tube feed, and finally expressing milk I just wake up when he cries, feed him for 10-15 minutes and he and I go back to sleep.  The other nice thing is that my cubicle now comes with a bed. At GOSH they would bring fold out beds around 10pm and collect them at 8am so I would be up most of the night and then not get any naps during the day. Now when Ryan is around I'm taking multiple naps during the day (still making up for several sleepless nights) so I'm feeling loads better. And Jansen is giving me 3-4 hour stretches at night--how luxurious!
Unfortunately with breast feeding there is no great way to measure Jansen's input so they want us to stay around here until they are sure that he is gaining weight. So even though I'm sure he's eating well, it's very hard to convince the doctors. If only they could see his milk coma face when he falls asleep right after eating maybe they would believe me. :) The only other thing they are waiting on is to find out from GOSH if the swabs that they had been taking from his chest incision grew anything other than normal skin bacteria.  His wound seems to be healing fine and he hasn't had a temperature and he's on prophylactic antibiotics, but again, they want to be absolutely certain before discharging him. So it looks like we'll be here until at least Tuesday, possibly Wednesday. The days are dragging on but this is the last lap. And in the meantime we're enjoying our little baby who is acting remarkably like a normal little baby. AND, he has absolutely no attachments now. At some point last night he pulled out his feeding tube and since we haven't used it in two days they aren't putting it back in.

sleep deprived, but enjoying freedom to cuddle

the cubicle at GOSH

Leaving GOSH! Us with the nurse who got us discharged to Cambridge

the new cubicle at Addenbrookes

Arie enjoying a visit to the hospital

Look mom, no strings attached!

The milk coma

Life on the Regular Ward

Ryan here attempting my first blog post...Kelly can correct what i get wrong but the days have blended some.  Monday morning Kelly's Dad, Arie and I took the train up to Cambridge to get some normalcy into Arie's life.  Tuesday I put Arie in daycare for said normalcy and that night Kelly's dad went back to London for one more night as he was flying out the next day.  Meanwhile Jansen was transferred to the regular ward.  This meant that there would be no more one on one nursing help.  All the nurses on the ICU thought that'd be great but it just meant Kelly would be much more responsible and tied to Jansen's bedside.  To say the least it was a bit of a shock to the system.  Tues. night Jansen's pain meds wore off and he was inconsolable.  Thankfully Dad B. was there to share the nights activities.  It took until 4:30 in the a.m. until one of the other mothers in the room said "he may be in pain"...and one of the nurses said "well he's allowed pain meds".  Useful information.  After some morphine the room was a bit more conducive to sleep.  I received a phone call early Wednesday morning from a very weary sounding man saying the last thing I probably wanted was advice from my father-in-law but my presence was required in London.  Needless to say I left immediately.  My mother had come in from the states Tuesday and wasn't quite on our time Wednesday so i took Arie to daycare on my way out of town.  We've had some real angels through all of this giving freely of their time and car seats, picking us up and dropping us off and food keeps magically appearing in my house...we couldn't do this without God's hands moving through our church members.  Thank you from the bottom of my heart, that's where I keep thank you's.

Throughout this week Jansen gets stronger and less stuff attached to him.  It's thursday night and after another day on the ward he's completely off of oxygen and they removed the last needle from his body.  All that's left is a feeding tube.  The only thing slowing us down now is his incision which they can't decide if it's infected, have you ever heard of a sterile infection?...I'm pretty sure that's an oxymoron.  They left him on oral antibiotics for it and will check again tomorrow.  His breast feeding could use improvement but i don't think that will keep us in London, we're hoping for a transfer soon.

Kelly had another encounter with the surgeon but she'll have to tell you about it. 

The Man, The Legend

Yesterday they took Jansen off the ventilator and he did great.  This morning, he is off of everything! All his meds are stopped and he is holding very stable. They have him on just a little bit of oxygen still through nasal prongs. They tried him on just air and his oxygen saturation dropped a bit lower than they wanted, so they said a day or two more on this small amount of oxygen and he'll probably be ready to lose that too. The plan for today is to take out some of his lines and then he'll be transferred off of the ICU if he stays stable today.  Yay for progress!
Yesterday evening, I finally got to meet the surgeon that did Jansen's surgery.  His name is Victor Tsang and everyone talks about him with an air of awe and respect.  He's the head of the department and at this point I didn't really expect to get to meet him since he's busy and Jansen's doing so well.  So I was shocked when he walked around the corner yesterday to come check on Jansen and introduced himself.  The conversation went something like this:
Him: "Hi, I'm Victor Tsang, the surgeon"
Me: "Hi, Thank You" (I start to cry)
Him: "Your boy is very strong"
Me: "Yeah, he's a fighter.  Thank You" (now sobbing)
Him: (looking slightly uncomfortable) "Because of the anatomy of his coronary arteries it was a difficult surgery, but we managed to do it"
Me: (barely getting out words at this point) "That's what they told us.  Thank You"
Him: (looking very uncomfortable at this point) "You're welcome. Well, I'll see you later"
I knew I wouldn't be able to hold it together if I ever got to meet him. At least I managed to keep from hugging him.  I think I probably would have scared him off faster if I had done that. I feel like there is so much more I wanted to say to him.  Like I should have composed a speech, or a sonnet or something. I'm not sure anything I said would have made me feel like I did justice to the depth of gratitude I have for that man. What can you say to the person who was responsible for saving your son's life? I'll be forever grateful that God worked through his hands to save Jansen.

Celebratory dinner out after Jansen's chest closure

Playing on the bus in the lobby with Arie

Day 4 post-surgery

Jansen has been doing great!  What a trooper.  Overall he has been very stable and they have already weaned him off of many of his meds.
Yesterday he had an echocardiogram to check the function of his heart.  His heart function looked fine, but they did find a small area of fluid outside of his heart. They decided to give it a day and give him some increased diuretics to try to get his body to eliminate the fluid without having to go in and suck it out.  We'll find out today if that worked.  He has certainly gotten rid of a ton of fluid overnight, so we're praying that the fluid around his heart will have decreased.  Otherwise they will have to open his chest a bit to suck it out.  That would also delay him getting off of his ventilator, something they are planning to do early this afternoon if the echo looks okay.  However, small setback and huge praises that his heart is pumping away.  He has to be off of his feeds before they take the vent out, so he hasn't been fed since 6 this morning and is off of his sedatives so he's acting like a hungry little baby.  Nice to see him acting normal even if it's not the best circumstances.
Ryan, Arie, and my dad all left this morning to go back to Cambridge.  My dad will come back down to London tomorrow afternoon before leaving on Wednesday morning. As hard as it was to say goodbye to them, it is time for Arie to have a little normalcy in his life.  For those who have been praying for Arie, I just wanted to share that he has done amazingly well with all of the upheaval in his life.  He has gone to bed in 3 different hotel rooms in the last week and often had to take naps in his stroller. He's had to be entertained in several different hospital waiting rooms and put up with mommy and daddy regularly disappearing to go see the baby. Through it all he's been remarkably good natured and has kept smiling and giggling like normal. He has been a blessing to us and a welcome distraction to lift our spirits during tough times at the hospital. Nothing short of a miracle for an almost 2 year old, so thanks so much for all the prayers for him!

Some pictures

Ryan's first cuddle on the high dependency unit before surgery

Grandma seeing Jansen in the ICU after surgery

In the ICU after surgery

 

Arie entertaining himself in the park by chasing pigeons

Success!

We were told that closing up the chest "was a 10 out of 10."  Everything went as smoothly as possible and the surgeons were happy with all of the pressures.  Sometimes they have to adjust medicines to help the heart deal with the increased pressure and sometimes they have to slightly adjust the position of the coronary arteries from where they were left after surgery, but they had to do neither with Jansen.  Very exciting and relieving news.
We also finally got to talk to one of the sugeons that was there at the initial surgery and he told us that though it was a difficult surgery, they managed to put the arteries where they wanted them to be so prognosis is good for Jansen.  Again, wonderful news to hear and such huge answers to prayer!! Now our little man starts the road to recovery.

Closing up Jansen's chest

Jansen has remained stable since surgery! They still have him on all sorts of meds of course and have kept him not really unconscious but certainly very sleepy so he doesn't move around much.  He does open his eyes a lot of the time when I'm up there and talk to him.
They routinely leave the chest open on these babies (with a membrane over) to allow swelling to go down and fluid to be cleared before they close up the chest and compress everything.  Since he has been stable and has been passing fluids well they decided to close up his chest today.   Surgery is going on right now as I sit typing.  The doctors have told us that this is the next time that there may be setbacks because the heart will be compressed and they have to find out if it can manage the increased pressure and if the conformation that they have his heart and arteries in will function well without any parts being squashed.
The surgery should take about an hour and will happen right on the CICU. They clear all non-essential staff and basically just treat the ICU like theatre rather than risk moving Jansen and all of his attached equipment. We'll be able to visit him after and then we'll talk to a surgeon about how his initial surgery went since we still haven't gotten to talk to anyone. Apparently, the head of the department is a busy man. :)
Will try to update tonight to let people know how the surgery went.

Surgery Day

Pretty much the worst day of my life.
Got up around 5 and couldn't get any more sleep so we got ready and went over to Jansen.  We got to give him a little clean up this morning before surgery and then I sat and held him for an hour and a half.  He couldn't eat so he was hungry, but with his dummy he was still pretty settled, so he just sat in my arms and looked at us for quite a while.  Precious time definitely.
Around 8:30 they took him for surgery.  We got to walk him down to the theatre and stay with him until he was off to sleep.  Then we left and I fell apart completely.  We cried for a long time and sat numbly staring into space for even longer. We took Arie to the park and tried to stay somewhat distracted but mostly cried on and off and worried about our little boy.
After the longest 4+ hours of my life, my phone rang and it was the head surgeon.  He told us "the operation went well".  I was so stunned and so on the edge of sobbing that all I could do was squeak out "good". He said Jansen was being transferred back to CICU and we could visit him there in another hour or so.
We cried and cried and then went to see him on the CICU. He is hooked up to loads of machines but is stable and the surgery seems to have gone as well as could be hoped given his anatomy. We haven't had a chance to talk to the surgeons yet, but we will tonight and will know much more detail about the surgery.
It was just such a relief to see him alive and to know that there were no major problems.  Praise God! There is still a long road to recovery and the dr. on the CICU said to expect blips and setbacks for the first at least 24 hours.  They still have his chest open so that's a little sci fi, but so minor compared to what we had feared we might hear that we are just overjoyed to see our little guy sitting there breathing.
I'll post more when we know more.  Thanks so much everyone for praying him through surgery!

11 May, 2011

Sorry for the lack of updates the last couple of days.
Tuesday night they were very worried about an infection in Jansen's central line.  The couldn't take that out though before they got another line in.  They spent an hour trying to get a line in somewhere and couldn't start any line so they put him on the emergency list to go into theatre to have another central line put in. That would mean going under general anesthetic and they would have to gather an entire cardiac team because the anesthetists are not allowed to take a heart baby into theatre without a cardiac team present.  Since it was about 8 at night by this time they weren't sure when that would happen and Jansen had to fast until he could get into theatre. After about two hours of waiting the doctor decided to try one more time to start a line and got one started in his forehead so he didn't have to go have a central line put in.  Thank God.
Yesterday they watched him closely for signs of infection, especially since one of his blood cultures grew something.  They added an antibiotic and he was stable for the day so the surgeon was happy to go ahead with the surgery today.  Last night we had to talk to someone from the surgical team about the risks of surgery and sign a consent form for it. We were told that since his coronary arteries were so abnormal there was about a 10% risk of death during surgery. And then we signed the forms.  I was pretty much a complete wreck after that. Jansen had one more feed at night (still doing very well feeding) so we got ourselves together and did his feed and sat with him for a while before going back to our room and trying to get just a little sleep.

The Rollercoaster continues

yesterday night they decided to put Jansen on antibiotics just as a prophylaxis in case he was developing an infection. Overnight his temperature came down a little bit and he seemed to be doing better. He had been a bit cold too, so I put him in a sleeper and blanket so he's wrapped up now like a proper little baby and seems to like it.
This morning when I got there his oxygen saturation in his blood was quite low and some of his blood gases, which they test periodically, were not where they should be and after trying to increase his oxygen a bit the doctors decided that they should restart the medicine he was on at the beginning to keep open his duct in his heart to allow his blood to mix better. They said it is pretty standard that they have to restart the medicine when there is a gap between birth and the surgery.  The down side is that there is the chance of apneas (stopping breathing) which Jansen did 3 times on the CICU so they are keeping a close eye on that.
This afternoon his temperature came back up and his heart rate was up quite a bit and he had a little bit of pus by a central line in his leg, so as I'm typing this they were going to take out the line in his leg and put lines in both of his hands.  I decided it was better to not be around to see him scream through that process.  He's still on antibiotics so hopefully that will be enough to have him not get that line infected. Once again, I just have to trust that he is in the best care possible.
He was on and off with feeds today but he took some from the breast with most of his feeds, so that is still positive on the whole. He's a very snuggly baby! I'm pretty sure he would be perfectly happy nestled in my arms all day. He loves to be wrapped up and sleeping on his side. It gets harder and harder the more time I get to just sit and hold him to think of sending him off to surgery but in his case there is no alternative so I just need to trust that God will provide the strength needed to get through the next step.

Rollercoaster

First, some pictures of Jansen in his new digs on the high dependency unit...

Last night Ryan and Arie left to go back up to Cambridge.  I managed to hold my tears until after they walked away since it freaks Arie out when I cry. :) It's hard to have them away right now, but it's been pretty intensive care for Jansen so it's good timing since it is hard for Arie to be around and have me not be available for him so much of the time. Overnight some of Jansen's blood work was a little off so the doctors were a little worried about him.  He also held his temp at 37.9 all night so he had a bit of a fever and the doctors were concerned that the might have an infection.
They kept a close eye on him throughout the day.  At one point they were talking about moving his surgery up to tomorrow but they decided to keep it for Thursday. They are working hard to try to get him stable and healthy for Thursday.  He's had a battery of tests today and I've been spending a lot of time just trying to keep him settled while he's poked and probed and moved and such. It's really a full time job.
On the bright side, he's been feeding really well today. Most feeds he's breastfed until he gets tired and falls asleep and then they top him up with expressed milk through his tube so that's been nice.  He really likes to suck and has been a champ about latching on and sucking.  They've been using a dummy for him when I can't be there but the doctors say it's a good sign for learning to feed again after surgery if he's wanting to suck so much now.  So that's a real answer to prayer.
His blood work for his bilirubin levels came back within the normal range, so his jaundice isn't severe and shouldn't cause any problems.  Another big answer to prayer.  For now, pray for him to stay free of infection until surgery on Thursday. Pray for his blood levels to stay stable. Pray for Arie and Ryan as they travel back tomorrow night.
Thanks so much everyone for prayers and encouragement and help!

May 7, 2011

Last night Jansen was moved from the CICU ward to the high dependency normal ward. He was still in stable condition but attached to a lot of monitors and drips.  The doctors were slightly worried because he hadn't had a bowel movement since he was born and pretty much while they were standing there talking about it he had a huge and loud dirty nappy, so that was one less worry.  That's my boy.
Today Arie and my mom came down from Cambridge to stay for the weekend (Thanks so much for getting them to the train, Justine!). It has been wonderful to get to see them and spend some time with Arie after a couple of days apart. He's not too sure what he thinks about baby Jansen and he definitely doesn't like it when mom is holding Jansen and he can't be held too, but overall he likes to talk about the baby and he likes it that it's "his" brother (he's very into what is "yours" and "not yours" right now).
Jansen was doing well this afternoon so they let me try to breastfeed again and he took almost a full feed from the breast. That's a nice answer to prayer. He'll have to re-learn to breastfeed again after the surgery but it will be nice if we can get some sort of base set before the surgery. Unfortunately his next feed he wouldn't breastfeed and then he had some drops in his oxygen saturation levels in the late afternoon so they put him on a bit of oxygen and I didn't get to try to feed him any more today.  Still, I'll celebrate the little victories. :)
It was a busy day going between playing at the park with Arie and having meals with him and doing bedtime and visiting Jansen every few hours so we are a bit tired, but certainly blessed to have my mom and Arie here.
The doctors are tentatively scheduling surgery for Thursday. Before we knew it was extra complicated they said it would be about 6 hours in surgery, so it may be even longer than that now. Yeah, not looking forward to Thursday much.
Ryan is planning to take the train back to Cambridge with Arie tomorrow night and stay there probably until Tuesday and my mom will stay down in London with me for a couple of days.
Thanks again all for your prayers and help. We feel very supported in prayer. Please pray for Jansen to stay stable for the next few days and to get stronger for his surgery. The doctors were a bit worried that he is getting jaundiced, so please pray for that to clear up and not affect him or the surgery plan. Pray for Ryan as it will be hard for him to leave and be away from Jansen and me for a couple of days. And of course, pray for the surgeon who will be performing the surgery, that he will be well prepared and that God will work through him to heal our little boy.  Thanks!
(I promise more pictures tomorrow...)

Life at Great Ormond Street

We got to Great Ormond Street in the ambulance and Ryan and I were sent to the waiting area while they did the reverse of what they did at UCH and got Jansen connected to the Great Ormond Street machinery. While they did that, the cardiologists assessed Jansen and after trying several things decided that he was not doing as well as he should be and they would need to do a procedure called a balloon atrial septostomy to make a large hole between the atria of his heart to allow the oxygenated blood to mix and get to the rest of his body. They do it with a little balloon catheter and go up to his heart through a leg vein. We signed the consent form and they cleared the cardiac ICU and did the procedure right there rather than take him to theatre.
We got something to eat and when we went back up the procedure was over and we were told it went very well. At that point we got to see him in the CICU at Great Ormond Street for the first time since he was brought over. He looked much better (much less blue)! He was still on a ventilator and morphine and several other things, so for the rest of the day/night they wanted to try to wean him off of some of those things and get him off his ventilator. His nurse told us not much else would happen with him so we might as well try to get a good night of sleep.
We also talked to one of the head cardiologists who had assessed Jansen and he informed us that unfortunately Jansen's coronary arteries that have to be grafted during the surgery are in a rare and complex pattern that makes surgery much less simple and more high risk. Not fun news to hear. They have seen it before, but it's a very small percent of TGA babies that have this, so it will be a difficult surgery to do.  Their most experienced surgeon is going to do the surgery and it will probably happen near the end of next week to give Jansen some time to recover from what he's been through since he's quite stable now.
We have a room right across the street from the hospital with beds and a toilet/shower and a little refrigerator, so it's a nice setup for us. Just what we need in terms of accommodation. We got some dinner and went back to our room and finally got some much needed sleep after being up the whole night before!
This morning when we went to visit Jansen they were just getting ready to take out his ventilator tube. He's been doing well off of his tube and he's now off of his morphine, prostin, and oxygen as well.  We got to hold him today for the first time (albeit connected to many many wires)! I got to try to feed him today too, but he was less than interested, so they are tube feeding for now and I'll continue to try and see if I can get him to have some interest. He's right now being transferred to the high dependency normal ward until his surgery, since he doesn't really need ICU care anymore at this point until he's operated on at which point he'll be back on the CICU.
That's about all the news up to this point.  Thanks so much for your prayers and support.  We don't have internet access at the hospital or our room so it's been hard to be so out of touch. We found a nearby starbucks with wifi, so we're currently living part of the time here, just to have some access to our support system! We'll try to get out more regular updates.

Welcome to the world, Jansen Elliot DuBois!

Jansen is a variant of John which means "God is gracious." Elliot means "Yahweh (God) is God." These are two things we have been learning and will continue to learn through this little boy. We have seen God's grace in much and we also have had to trust that God is God and is the one in control of this situation.

We went to the hospital and got there around 9pm on the 4th of May. We had to wait a while to get into a room and be assessed, talk to the dr., etc. They started the induction around midnight, saying that the gel they used usually took 2 applications so they would do the first and then we could sleep. The plan was to get up, shower, have breakfast and then they would do the second application to get things going. They did the first application and I went straight into labor. We both managed to get just a little bit of sleep on and off but by 3:30 in the morning sleep was no longer a possibility. Around 5 I called the midwife in to have her check my progress and to get access to gas and air. I was about 6 cm dilated and things moved quickly from there. In the meantime the midwife introduced us to the ICU team that would be present at the birth to take Jansen to ICU. She sent them away and said she'd call them when the baby was about to be born. About 5:50 she broke my water and I was immediately ready to push. The ICU team was frantically called back and Jansen was delivered at 6:05 am weighing 7lb, 8oz (3.4kg). He gave a good strong cry when he came out.  I got to hold him for about a minute and then he had to go to ICU. Ryan went with just briefly to see where he would be while I finished up delivery.
Once in ICU, Jansen was started on a prostaglandin drip to keep open the duct between his two heart atria to help with oxygenation of the blood.  He was still not doing so well with oxygen levels so they put him on a ventilator as well, and some medicine to keep his heart pumping strong. The transfer team was called over from Great Ormond Street and the ICU doctor came back to visit us to tell us that they were on their way over to take Jansen to ICU.
By this time I showered and Ryan and I went to visit Jansen on ICU.  The transfer team was there preparing him for his ambulance ride to GOSH.  It took about an hour and a half to get him transferred onto all of the mobile equipment from the ICU equipment of the hospital. The midwife said she was happy to discharge me right away since the birth was straightforward with no medication or complications (thank God!) so two hours after giving birth I was discharged and we rode in the ambulance with Jansen over to GOSH.

More in the next post...

Here we go

We got the go ahead just after 5 tonight that a spot opened up at Great Ormond Street for our little guy so we can head down to London to start the induction.  Very mixed feelings right now but ready or not, here we go...

God's timing is perfect....right?

We were told to call this morning before we headed down to London for induction to make sure there was room for me on the labor and delivery ward and room for the baby in the intensive care unit.  Unfortunately, the intensive care unit is full today so we were told to not come down to London and call tomorrow morning around 9:30 to see if there is room.  So here we sit, in a holding pattern.  Everything is packed and ready to go but we're stuck here, still anticipating, still dreading, and trying to pass time.  If we could somehow kick off labor we could just have the baby at Addenbrookes and he would be transferred to GOSH from there.  Any ideas for starting labor? :)