I spoke with the on-call pediatrician about our bottle problems vs tube and weight gain. I proposed we breastfeed mainly this weekend and keep trying the occasional bottle then come in for a weight-check and he thought this was a good idea. He asked that we keep track of wet diapers and poops to make sure Wren was getting enough breastmilk.
If weight-gain is okay on Monday we will keep just nursing till our first normal pediatrician appointment that Friday. Otherwise the tube will need to be replaced.
Our appointment is at 11.30am.
Meanwhile, Frost is working hard at being a big brother. He keeps wanting to put the little hospital vibrator under Wren, regale him with song, pulls faces, is setting up a gallery of pictures so Wren can enjoy looking at them and has run off to make something with paper and pens "for Wren". I know it is important to help him find a role and he is very kind and enthusiastic still, it is sometimes hard to channel this energy around a baby when Frost is clearly pining for the day he can play lego with him or show him "how to climb up to the fort".
Nonetheless Frost is encouraged. This afternoon Frost looked searchingly at Wren while he was being changed and announced "he is getting really big!"
I sure hope so.
Sunday, January 7, 2007
Bottle battles
Wren does not like to drink from the bottle. We have tried all the tricks but he cries and fusses between short periods of sucking. Our best effort had him taking about 30ml at one go (with lots of red-faced complaint). This morning he wouldn't even take 10ml before getting into a frenzy of yelling, arching and spitting with a disgusted expression on his face.
I am not sure whether it is the mechanism of bottle-feeding or the taste of teh Alimentum enriched breastmilk that he objects to. Regardless, he is not getting the 4X 85ml supplemented feeds the nurse required if he was to be tube-free.
I have called our pediatrician but she is on leave till Monday so I may speak with the on-call doctor to see what they recommend. I would like to keep trying till Monday and have scheduled a weight-check at the pediatricians to see how he is doing with more breastfeeding and less of that extra-calorie stuff.
The good news is that without the ng tube his breathing is less noisy and labored and he spits up less. The reflux is very positional and I can barely diaper change him on the wedge after nursing. I have to keep his head quite elevated when he's full. Still, he doesn't seem as distressed after feeding as he used to after an ng-feed. I suspect he is not quite as full as he paces himself a bit. The downside for me is that he wants to eat every 1.5 to 2.5 hours instead of the three hourly formula-tube schedule. Yikes, I am tired.
I am not sure whether it is the mechanism of bottle-feeding or the taste of teh Alimentum enriched breastmilk that he objects to. Regardless, he is not getting the 4X 85ml supplemented feeds the nurse required if he was to be tube-free.
I have called our pediatrician but she is on leave till Monday so I may speak with the on-call doctor to see what they recommend. I would like to keep trying till Monday and have scheduled a weight-check at the pediatricians to see how he is doing with more breastfeeding and less of that extra-calorie stuff.
The good news is that without the ng tube his breathing is less noisy and labored and he spits up less. The reflux is very positional and I can barely diaper change him on the wedge after nursing. I have to keep his head quite elevated when he's full. Still, he doesn't seem as distressed after feeding as he used to after an ng-feed. I suspect he is not quite as full as he paces himself a bit. The downside for me is that he wants to eat every 1.5 to 2.5 hours instead of the three hourly formula-tube schedule. Yikes, I am tired.
Saturday, January 6, 2007
The tube is out
Bottles are in!
Our first "cardiac surgery clinic" visit went well. I thought it was going to be a short weight check and discussion on how we were doing but it took two hours and involved having a chest X-ray, EKG, all vitals, sats etc. Our nurse (one of those NPs who do a lot of the follow-up) said "I have no concerns".
Here is the summary:
1) Chest x-ray is completely dry - not even the suggestion of fluid around the lungs as there was at discharge.
2) EKG - normal sinus rhythm
3) Weight - 4.3kg = 60g gained per day.
4) BPs as they were before.
5) SATs in extremities 100%
6) He has reflux and will probably go on Reglan / prilosec from next week.
7) I was given a choice of doing 4 feeds by ng tube or 4 feeds by bottle. While the bottle won't be easy it is so tempting to try. So, she removed the ng tube and we are now doing all feeds by mouth.
8) Wound is healing well but still needs dry-packing.
Even though Mum left this morning I am feeling far better about everything to be ng-tube free (at least for a while). Thinking back over the past few days I think I am feeling so emotional as I relax a little - kind of recovering from the surgery and anxiety that has gone before. I think there were only two days on which I felt so emotional (the day he was born and while he was in surgery). The rest of the time I have been trying to C-O-P-E rather than collapse in a heap. There wasn't time to cry about things so now I get to cry about traffic and spilt milk (literally).
Anyway, this is a happy post. I got to eat some hot lunch at the Children's Cafetaria which was quite good and nothing can go wrong when you have blue-cheese dressing.
I have some phonecalls to make later (you know who you are!) but for now, I am going to nap while Wren sleeps too.
Our first "cardiac surgery clinic" visit went well. I thought it was going to be a short weight check and discussion on how we were doing but it took two hours and involved having a chest X-ray, EKG, all vitals, sats etc. Our nurse (one of those NPs who do a lot of the follow-up) said "I have no concerns".
Here is the summary:
1) Chest x-ray is completely dry - not even the suggestion of fluid around the lungs as there was at discharge.
2) EKG - normal sinus rhythm
3) Weight - 4.3kg = 60g gained per day.
4) BPs as they were before.
5) SATs in extremities 100%
6) He has reflux and will probably go on Reglan / prilosec from next week.
7) I was given a choice of doing 4 feeds by ng tube or 4 feeds by bottle. While the bottle won't be easy it is so tempting to try. So, she removed the ng tube and we are now doing all feeds by mouth.
8) Wound is healing well but still needs dry-packing.
Even though Mum left this morning I am feeling far better about everything to be ng-tube free (at least for a while). Thinking back over the past few days I think I am feeling so emotional as I relax a little - kind of recovering from the surgery and anxiety that has gone before. I think there were only two days on which I felt so emotional (the day he was born and while he was in surgery). The rest of the time I have been trying to C-O-P-E rather than collapse in a heap. There wasn't time to cry about things so now I get to cry about traffic and spilt milk (literally).
Anyway, this is a happy post. I got to eat some hot lunch at the Children's Cafetaria which was quite good and nothing can go wrong when you have blue-cheese dressing.
I have some phonecalls to make later (you know who you are!) but for now, I am going to nap while Wren sleeps too.
Friday, January 5, 2007
Reflux gridlock
This is from an email I sent Laurie. I don't think I can type anything else tonight. I am going to drink peppermint tea and try to get to bed before 11pm.
"I am having a weepy-sobby day again due [to hormones and] to Wren vomitting all over me 3 times. I am now in dread of feedings (again) because half the time they come up all over both of us in a vomiting choking mess. I am afraid he will be losing weight again because of this.
On top of this my Mum leaves tomorrow AND I went to fetch Josh and got caught in the I-90 collision gridlock for almost 2 hours on a trip downtown. I have never been reduced to tears by traffic but this was it. Josh says I was "making up pitiful little stories about myself". This is true. I was feeling tragic that I wasn't with Wren, that we were late for his feed, that I had only had a Luna bar for dinner, that Frost is miserable with me ... etc. I managed to weep all the way home and still refused to let josh drive. I think I almost agreed to buy a second car (except J wants a new Mini Cooper and I want a $2000 bomb).
In the middle of my day the Social Security Administration called to see whether we qualified for supplemental benefits due to having a child with a disability (or birth defect or medical case or something like that). I spent about 10 minutes explaining that we didn't need a means-tested benefit but the interviewer kept saying that she needed to do the screening to check on my son's eligibility. After 20 minutes she said "sorry, he is not eligible". Argh! He had been yelling and needing diaper change for half the time.
"I am having a weepy-sobby day again due [to hormones and] to Wren vomitting all over me 3 times. I am now in dread of feedings (again) because half the time they come up all over both of us in a vomiting choking mess. I am afraid he will be losing weight again because of this.
On top of this my Mum leaves tomorrow AND I went to fetch Josh and got caught in the I-90 collision gridlock for almost 2 hours on a trip downtown. I have never been reduced to tears by traffic but this was it. Josh says I was "making up pitiful little stories about myself". This is true. I was feeling tragic that I wasn't with Wren, that we were late for his feed, that I had only had a Luna bar for dinner, that Frost is miserable with me ... etc. I managed to weep all the way home and still refused to let josh drive. I think I almost agreed to buy a second car (except J wants a new Mini Cooper and I want a $2000 bomb).
In the middle of my day the Social Security Administration called to see whether we qualified for supplemental benefits due to having a child with a disability (or birth defect or medical case or something like that). I spent about 10 minutes explaining that we didn't need a means-tested benefit but the interviewer kept saying that she needed to do the screening to check on my son's eligibility. After 20 minutes she said "sorry, he is not eligible". Argh! He had been yelling and needing diaper change for half the time.
Taking all day to wash my face
Things are going a lot better today. Besides adding in 3 ng-feeds, a few dressing changes and 2 medications - I feel I am doing the normal baby routine of eat-cry-sleep eat-sleep-cry which most of you are familiar with. I start the day with an intention to do one thing like wash my face and manage to do it around 4pm (I hope, I haven't done it yet).
Wren is having a long sleep this afternoon and I had a nap which makes for great deal of happiness all round.
Thankyou for all the encouragment after my meltdown yesterday. I appreciate it - especially the reassurance that I am not doing too badly with my ng-tube fumblings. Today we have not had a failed feeding (other than a couple of episodes of spitting up half of what I gave him).
Tomorrow we have our first weekly checkup at Children's Hospital. I have a 9.30am at the Cardiac Surgery Clinic with a RN. She will do wound-care, weight and general vitals as well as check on his overall progress. Fingers crossed for a healthy looking baby and good weight gain.
Wren is having a long sleep this afternoon and I had a nap which makes for great deal of happiness all round.
Thankyou for all the encouragment after my meltdown yesterday. I appreciate it - especially the reassurance that I am not doing too badly with my ng-tube fumblings. Today we have not had a failed feeding (other than a couple of episodes of spitting up half of what I gave him).
Tomorrow we have our first weekly checkup at Children's Hospital. I have a 9.30am at the Cardiac Surgery Clinic with a RN. She will do wound-care, weight and general vitals as well as check on his overall progress. Fingers crossed for a healthy looking baby and good weight gain.
Thursday, January 4, 2007
Losing it
I have been fighting with the ng-tube all day. Yesterday it kept getting "blocked" in a way that made it impossible to retract fluid to confirm that it was in his belly. The help line said it was a placement problem and that the tube was pushed up against his stomach lining. I felt awful - had I been sucking holes in his stomach?
They assured me this was not the case but that it could cause "a hicky" in his tummy. A hicky? I am sure this is not a lovebite situation.
Today, the 9am feed was fine but each time I tried again I failed to clear the tube and couldn't do the 3pm or 6pm feeds. I ended up in tears, feeling I was failing to give him what he needs AND/OR was hurting him. The whole process of placement and trying to clear the tube involves pushing a bit of air into his belly, then a few CC's of water, alternatively warm water and/or cranberry juice. The whole process is a nightmare as he cries, I cry, Frost tries to sing (loudly) to calm Wren and then turns on a baby CD (loudly) and Mum gives her views (that this isn't working, try later, try with Josh, just nurse him etc).
I called the help-line about 5 times today and he different advice each time. Some said try a new tube, use 5CCs of fluid to flush the line, try OJ, try COCA-COLA!!!, dissolve the crushed aspirin in hot water first, separate the meds delivery with a bolus of 1CC of water... blah blah.
Finally, he most experienced NP said it is just a matter of placement and suggested that we not hold him while we do the feed as the tube can move into a part of the stomach that blocks uptake but it still fine for the feed. She told me to lay him on his back and/or just do the air-pop test (I won't go into this for everyone) and then deliver the feed. She told me to do a bolus feed for the short nursing I gave him to calm him (and myself). I keep thinking "what would the neighbours think?" if they see me sitting sobbing into the phone on the glider-rocker. Its not a matter of the neighbours thinking anything but they have had lots of guests today!
So, finally, I followed her advice and gave him 40ml of enriched BM and it went in fine and Wren fell asleep (finally). With the schedule so messed up I am not sure whether I am starving him or overfeeding him.
They assured me this was not the case but that it could cause "a hicky" in his tummy. A hicky? I am sure this is not a lovebite situation.
Today, the 9am feed was fine but each time I tried again I failed to clear the tube and couldn't do the 3pm or 6pm feeds. I ended up in tears, feeling I was failing to give him what he needs AND/OR was hurting him. The whole process of placement and trying to clear the tube involves pushing a bit of air into his belly, then a few CC's of water, alternatively warm water and/or cranberry juice. The whole process is a nightmare as he cries, I cry, Frost tries to sing (loudly) to calm Wren and then turns on a baby CD (loudly) and Mum gives her views (that this isn't working, try later, try with Josh, just nurse him etc).
I called the help-line about 5 times today and he different advice each time. Some said try a new tube, use 5CCs of fluid to flush the line, try OJ, try COCA-COLA!!!, dissolve the crushed aspirin in hot water first, separate the meds delivery with a bolus of 1CC of water... blah blah.
Finally, he most experienced NP said it is just a matter of placement and suggested that we not hold him while we do the feed as the tube can move into a part of the stomach that blocks uptake but it still fine for the feed. She told me to lay him on his back and/or just do the air-pop test (I won't go into this for everyone) and then deliver the feed. She told me to do a bolus feed for the short nursing I gave him to calm him (and myself). I keep thinking "what would the neighbours think?" if they see me sitting sobbing into the phone on the glider-rocker. Its not a matter of the neighbours thinking anything but they have had lots of guests today!
So, finally, I followed her advice and gave him 40ml of enriched BM and it went in fine and Wren fell asleep (finally). With the schedule so messed up I am not sure whether I am starving him or overfeeding him.
Weight gain
Our home-help nurse came by again last night. Apparently the cardiac team were not happy that she left without a weight.
The scale was set out and Wren was unwrapped in all his glory. He weighed 4.260kg a weight gain of 230g since discharge while we need to gain 25g a day. On the basis of this good news I am "allowed" to replace one ng-tube feed with a BF. This brings me to 4 BF / 4 NG feeds.
The next checkup is on Friday morning, the day Mum leaves (weep).
It wasn't such an easy night last night. Wren wanted to nurse every 2 hours and grunted a lot between times. Josh managed to sleep through it but I will definitely need a nap - possible today because Frost is BACK AT SCHOOL!
The poor guy had to be pulled from bed. The alarm didn't stir him at all. As I put breakfast in front on him he asked "is it still the night?" He is indignant that Wren gets to "stay up late" and now Wren is allowed to sleep in too? Hopefully much fun will be had seeing his friends again and perhaps bedtime will be a bit smoother for both of them tonight.
The scale was set out and Wren was unwrapped in all his glory. He weighed 4.260kg a weight gain of 230g since discharge while we need to gain 25g a day. On the basis of this good news I am "allowed" to replace one ng-tube feed with a BF. This brings me to 4 BF / 4 NG feeds.
The next checkup is on Friday morning, the day Mum leaves (weep).
It wasn't such an easy night last night. Wren wanted to nurse every 2 hours and grunted a lot between times. Josh managed to sleep through it but I will definitely need a nap - possible today because Frost is BACK AT SCHOOL!
The poor guy had to be pulled from bed. The alarm didn't stir him at all. As I put breakfast in front on him he asked "is it still the night?" He is indignant that Wren gets to "stay up late" and now Wren is allowed to sleep in too? Hopefully much fun will be had seeing his friends again and perhaps bedtime will be a bit smoother for both of them tonight.
Wednesday, January 3, 2007
Occluded
Since Wren's birth and surgery Josh and I have gained an expanded vocabulary. Today, as we drove down towards Elliot Bay I shared my thought that:
Shannon: "...the bay is occluded by rain"
Josh: "I'd say 'the bay is occluded by silt'"
Shannon: Okay, my view of Elliot bay is occluded by rain.
Josh: And I should extubate the old kitchen walls.
Shannon: Extubate the plumbing?
Josh: Mrrmm
Shannon: And use the sander to debrade the old drywall joints.
Occluded is definitely my favorite. As used by Dr Cohen: "When the PDA was tied off the arch was completely occluded"
As per dictionary.com: Occluded
–verb (used with object)
1. to close, shut, or stop up (a passage, opening, etc.).
2. to shut in, out, or off.
3. Physical Chemistry. (of certain metals and other solids) to incorporate (gases and other foreign substances), as by absorption or adsorption.
–verb (used without object)
4. Dentistry. to shut or close, with the cusps of the opposing teeth of the upper and lower jaws fitting together.
5. Meteorology. to form an occluded front.
[Origin: 1590–1600; < L occlūdere to shut up, close up, equiv. to oc- oc- + -clūdere, comb. form of claudere to close]
Shannon: "...the bay is occluded by rain"
Josh: "I'd say 'the bay is occluded by silt'"
Shannon: Okay, my view of Elliot bay is occluded by rain.
Josh: And I should extubate the old kitchen walls.
Shannon: Extubate the plumbing?
Josh: Mrrmm
Shannon: And use the sander to debrade the old drywall joints.
Occluded is definitely my favorite. As used by Dr Cohen: "When the PDA was tied off the arch was completely occluded"
As per dictionary.com: Occluded
–verb (used with object)
1. to close, shut, or stop up (a passage, opening, etc.).
2. to shut in, out, or off.
3. Physical Chemistry. (of certain metals and other solids) to incorporate (gases and other foreign substances), as by absorption or adsorption.
–verb (used without object)
4. Dentistry. to shut or close, with the cusps of the opposing teeth of the upper and lower jaws fitting together.
5. Meteorology. to form an occluded front.
[Origin: 1590–1600; < L occlūdere to shut up, close up, equiv. to oc- oc- + -clūdere, comb. form of claudere to close]
Home help nurse visit
We had our first nurse practitioner home-help visit this morning. It was a bit chaotic. At the time she arrived he was mid ng-feed, had just had meds, we due for dressing change, diaper change and then the nurse wanted to listen to his heart/lungs and get a temp.
By the end of it Wren was yelling and tubes were trailing, the table we do dressing change on is in a corner and has dim light and there were three of us trying to squeeze in to see what was going on (Josh with the forceps, me with the binkie and the nurse with a clipboard).
I think we passed and she had some suggestions to streamline operations. It is so much harder to do scheduled administered feeds than simply responding to his needs via breastfeeding. Honestly, I don't know if I could do bottle feeding if I wanted to. There is just so much washing and prepping one girl can do!
Days are passing in a blur of feedings, meds, trying not to ignore Frost and simply pacing myself for the next required activity. As soon as I sit down Wren is awake again... I am typing this as my lunch microwaves but I can hear him gurgling so odds are I will have to soothe him and will forget to eat lunch till a few hours pass. I don't mean to, but that is about how long it takes to have another empty moment.
Meanwhile, the weather is a wonderful combination of wind and rain that is blowing all the extra Christmas garbage around our neighbourhood. Car lights reflect in puddles and Frost had a fun time this morning "showering" in the overflow from the guttering (soaking his raincoat and boots). He also had a "test cook" in which he threw together baking ingredients in a fairly random way and "made Frost's special chocolate Chip cookies". The recipe is available to all who want it, he says.
Josh is back at work today for the first time since Wren was born. He says his whole day will be taken up responding to email. That sounds delightful!
By the end of it Wren was yelling and tubes were trailing, the table we do dressing change on is in a corner and has dim light and there were three of us trying to squeeze in to see what was going on (Josh with the forceps, me with the binkie and the nurse with a clipboard).
I think we passed and she had some suggestions to streamline operations. It is so much harder to do scheduled administered feeds than simply responding to his needs via breastfeeding. Honestly, I don't know if I could do bottle feeding if I wanted to. There is just so much washing and prepping one girl can do!
Days are passing in a blur of feedings, meds, trying not to ignore Frost and simply pacing myself for the next required activity. As soon as I sit down Wren is awake again... I am typing this as my lunch microwaves but I can hear him gurgling so odds are I will have to soothe him and will forget to eat lunch till a few hours pass. I don't mean to, but that is about how long it takes to have another empty moment.
Meanwhile, the weather is a wonderful combination of wind and rain that is blowing all the extra Christmas garbage around our neighbourhood. Car lights reflect in puddles and Frost had a fun time this morning "showering" in the overflow from the guttering (soaking his raincoat and boots). He also had a "test cook" in which he threw together baking ingredients in a fairly random way and "made Frost's special chocolate Chip cookies". The recipe is available to all who want it, he says.
Josh is back at work today for the first time since Wren was born. He says his whole day will be taken up responding to email. That sounds delightful!
Tuesday, January 2, 2007
ng tube confusion
Well, it seems we have been disposing of our pump-kits every feed instead of every 24 hours so we have almost run out! The pump-feed kits include a bag, lots of tubing and little valve kit. It doesn't look disposable. Anyway, we checked our discharge instructions and it says dispose bag every 3 hours but on the bag is says replace every 24 hours.
When I noticed we had only 4 left (for 5 feeds every 24 hours) I called the 24 hour help line and the trainer was most apologetic for her mistake. Apparently we should have been keeping these things for 24 hours in the fridge. Ack. Now we are short of supplies and have to have them air-freighted to us.
I am glad the error was in the pump plastic stuff and not in medicine dosage but it is a bit alarming.
Meanwhile, we had a good night. Wren was awake from 2am - 3am and managed to need three consecutive diaper changes before I could put him down but after that I managed to stay in bed until 7.30am which was splendid.
Frost stayed up till 12.30am with Josh but didn't see any fireworks. Despite his new year revels he was up at 8.30am and isn't showing signs of wear just yet.
When I noticed we had only 4 left (for 5 feeds every 24 hours) I called the 24 hour help line and the trainer was most apologetic for her mistake. Apparently we should have been keeping these things for 24 hours in the fridge. Ack. Now we are short of supplies and have to have them air-freighted to us.
I am glad the error was in the pump plastic stuff and not in medicine dosage but it is a bit alarming.
Meanwhile, we had a good night. Wren was awake from 2am - 3am and managed to need three consecutive diaper changes before I could put him down but after that I managed to stay in bed until 7.30am which was splendid.
Frost stayed up till 12.30am with Josh but didn't see any fireworks. Despite his new year revels he was up at 8.30am and isn't showing signs of wear just yet.
Monday, January 1, 2007
Happy new year
I don't have a lot of time to post what with trying to get ourselves sorted out at home, but the quick and wonderful news is that Wren came home this afternoon at about 2pm.
After all we have been through the discharge was rather uneventful. The nurse came in and went through a long sheet covered with scrawly writing which detailed subjects such as "wound care 2X a day", "ng feeds 5X per day at 3hr intervals", "hydrocortisone at 8hr intervals", "other meds 2X daily or 1X daily as per pharmacy instructions"... etc etc.
We have weekly appointments sheduled, first with the cardiac surgery team next Friday, then with our pediatrician and finally another cardiology appointment and echo in 3 weeks time. We have decided to see Dr Lewin at Children's rather than Dr Krabel (although both are great). Children's is so close and we feel that Dr Lewin was instrumental in advocating the CoArc repair rather than the Norwood and believed Wren could do well. We like that optimism.
Frost is very happy to have Wren home. We have a little baby-monitor which I asked Frost to keep track of to see when Wren wakes up. He carries it around and whenever he hears a murmur he runs into the bedroom to "check on Wren". I think it is important for him to have a role.
Josh is also happy. I learned about the discharge at 6am but didn't wake Josh with a phone call. Instead, he woke without the news and assumed Wren was not to be released. He lay in bed a while making up various rants about how Wren should be released because he was just having baby-sitting at the hospital and we could do everything else just as well at home. He has been holding Wren a great deal and looked after him for a few hours while Mum and I went out to buy a crib-mattress and more supplies.
I confess that even with homecoming so close for days we have not had the house ready. I haven't bought any baby things until the last few days and so the basics are lost or mislaid. Other stuff is in bags all over the place (we came home with tons of bags of stuff - only some of which is essential).
I feel we are coping with all the medical stuff we have to do, the part I find hard is worrying about Wren all the time. At hospital, I could just ask a nurse or doctor about something that I was obsessing about but now the things he was doing in hospital are freaking me out. Is he breathing too fast? A (Josh): No, he always breathes like that. He just breathes fast. You couldn't hear it in the hospital [where fans were always going]. Are his hands cold? (Josh) Well, he's not wrapped up. I am just scared I will miss something and he will be ill or in trouble.
Anyway, I hope that we get some sleep tonight. There seem to be so many scheduled events - feeds, meds, etc - between now and 8am!
After all we have been through the discharge was rather uneventful. The nurse came in and went through a long sheet covered with scrawly writing which detailed subjects such as "wound care 2X a day", "ng feeds 5X per day at 3hr intervals", "hydrocortisone at 8hr intervals", "other meds 2X daily or 1X daily as per pharmacy instructions"... etc etc.
We have weekly appointments sheduled, first with the cardiac surgery team next Friday, then with our pediatrician and finally another cardiology appointment and echo in 3 weeks time. We have decided to see Dr Lewin at Children's rather than Dr Krabel (although both are great). Children's is so close and we feel that Dr Lewin was instrumental in advocating the CoArc repair rather than the Norwood and believed Wren could do well. We like that optimism.
Frost is very happy to have Wren home. We have a little baby-monitor which I asked Frost to keep track of to see when Wren wakes up. He carries it around and whenever he hears a murmur he runs into the bedroom to "check on Wren". I think it is important for him to have a role.
Josh is also happy. I learned about the discharge at 6am but didn't wake Josh with a phone call. Instead, he woke without the news and assumed Wren was not to be released. He lay in bed a while making up various rants about how Wren should be released because he was just having baby-sitting at the hospital and we could do everything else just as well at home. He has been holding Wren a great deal and looked after him for a few hours while Mum and I went out to buy a crib-mattress and more supplies.
I confess that even with homecoming so close for days we have not had the house ready. I haven't bought any baby things until the last few days and so the basics are lost or mislaid. Other stuff is in bags all over the place (we came home with tons of bags of stuff - only some of which is essential).
I feel we are coping with all the medical stuff we have to do, the part I find hard is worrying about Wren all the time. At hospital, I could just ask a nurse or doctor about something that I was obsessing about but now the things he was doing in hospital are freaking me out. Is he breathing too fast? A (Josh): No, he always breathes like that. He just breathes fast. You couldn't hear it in the hospital [where fans were always going]. Are his hands cold? (Josh) Well, he's not wrapped up. I am just scared I will miss something and he will be ill or in trouble.
Anyway, I hope that we get some sleep tonight. There seem to be so many scheduled events - feeds, meds, etc - between now and 8am!
Coming home!
Wren gained 80g today and the surgeon has entered his discharge orders. Josh is getting "pump training" now and we should have him home this afternoon.
More news soon!
More news soon!
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