Amelia's long road to recovery

[Amelia_mom]

hi

My daughter, Amelia was born with MVI and at had her 1st Mitral valva repair at 3 week old which later was not good enough. Had a 2nd repair at 7 weeks old and that failed too. So her MV was later replaced on 17 Dec 05 with a St. Jude valve. So far she had been weaned off a lot of medication and the intubated ventilator (which her life was really depending on). She is now on another ventilator (with the nasal prong). She is taking so long to come off the ventilator because she has never been breathing on her own except the first 2 days of her life.

She is on warfarin. I don't know the level of the INR as the doctors are still figuring the exact level for her bearing in mind she is only 3.2 kg .

My questions are what is there to expect during this recovery stage?

She is a very complicated case. The surgeon was hoping she could get away with the first surgery he tried to repair. But at the same time, he wasn't sure if she might need another repair or have a replacement, her chest was left open for almost 6 weeks (until the 3rd surgery). She was almost gone when infection complicated things. I am not sure if this was a wise move ... but her heart was really swollen and enlarged as she was under congestive heart failure for the 3 weeks before the first surgery.

Now that she has the valve replaced, what the hurdles she may face?

How long does the heart take to remodle to it's optimum shap or size etc.

How about atrial fibrillation...(how does it look like). The doctors here are not too good at explaining things, most of the patients they get don't read up so much or ask so much questions. Also many cases they get are so straight forward (eg hole in the heart).

I am so upset even at the point of breaking down becasue nobody really takes time to explain things and we are the ones doing all the search to educate ourselves to know what's happening to the baby. Yes, the doctors are busy taking care of the patients but they need to at least update and explain how is my baby and why.

We understand the readings but SOME of the nurses just tell us it's not important to us and that they have years of training and experience so they know when to be alarm.

The worst is now I find out after reseaching on my own that the fenugreek herb that I take to increase my milk production may interact with her warfarin. The dietician, lactation consultant or even her cardiologist never said that!!!!!!

I just pray that someone can share with me your long road to recovery.

 

[Amelia_mom]

I fogot to add, Amelia is on the pacer at 120. Her skin temp sometimes is cool (30.something) while the other numbers are ok.

Now her skin temp is ok (32 to 35) , her heart rate is all over the place. Sometimes it jumps to 200 and slowly creeps down to paced rate of 140ish.

 

[Mary]

Dawn,
My heart aches for what you and Amelia are going through. I don't have the answers to your questions, but I know that some of the mothers, who have children with heart issues, will be along to give you advice.
I will put both you and Amelia in my prayers. Please try to hold on.
Mary

 

[Emma]

Hi Dawn,
Firstly I'd like to send you massive hugs and wish you were closer and I'd ring or visit you to talk about Chloe's story with you in person which would be easier. But nonetheless, I can have a go at answering your questions here.
I did reply to your original thread so apologies if I repeat myself.

Amelia sounds amazingly close to how Chloe was at her worst. She was very tiny and very ill and we came terrifyingly close to loosing her to heart failure.

To answer your questions... (sorry I don't know how to quote you, so I'll have to do this the long way)...

Chloe's heart was massive at the time of her replacement and to answer your question about how long it takes to return to size, I think its quite possibly dependent on the patient. Chloe's took about 2 years to get down to a normal size for her age but she had no problems with her enlarged heart once the valve was replaced.

I'm afraid I don't know much about A-Fib as its the one thing Chloe hasnt suffered from (yet, and please god wont!) but I have no doubt others on here know all about it and will be able to help with that. Or you could search on the site here for A-Fib and read the related threads.

Is Amelia on a permanent pacemaker or just the temporary pacing wires still?? A pacemaker is not something to worry about even if she does need one. Chloe is likely to need one at some point as they are quite commone in children with the kinds of CHD our girls have and I know so many children with them and they are all doing extremely well.

Chloe also suffered with temp changes and heart rate problems post op. Both are common and will probably settle in time, if the heart rate doesn't, there are drugs to control heart rhythm that are very effective, even in babies as small as Amelia.

It does sound like Amelia is making good progress now, having being weaned off medicines and the big vent already. I know the progress feels slow to you, it always did to me, but she will get there!!

As for what hurdles Amelia faces with the valve???

Well, Chloe has had her replacement valve for 5 years in June and I have only today found something I need to stop her doing. Shes a very 'normal', energetic and loud 6 year old with a huge enthusiasm for absolutely everything!
Warfarin is a pain sometimes, as in, you will need to watch Amelia slightly closer for bumps and cuts, but she will be fine. Warfarin is not as scary as it sounds at all and the valve won't hold Amelia back from having a completely normal life. Its never stopped Chloe!!

I hope I've answered at least some of your questions??? Please feel free to ask anything else you want to! I know exactly how stressful this is with a new baby and heart surgery and am happy to help you any way I can.

Sending you and Amelia love
Emma
xxx

 

[Cris N]

Dawn,
My heart aches for the agony you must be feeling. While I can't answer any of your questions about your precious daughter I can offer my prayers. I do hope that the medical folks caring for Amelia will finally realize that you need some answers. Keep after them!

Cris

 

[PJmomrunner]

Hi Dawn!

Hi Dawn!

I hope you find Emma's post reassuring. This website is just an amazing forum for sharing our experiences. I can only offer prayers and well wishes and perhaps a bit of advice on milk production. It sounds like you will be discontinuing the fennugreek, although maybe someone will come along to offer advice on that. The only way I know (and I think the safest way) to increase milk production is to nurse more often. If Amelia can't help you out with that, use a pump in between feedings and donate the milk or freeze it. Make sure you get enough liquids and calories yourself and try to rest (probably easier said than done in your case ) and your body will respond to the increased demand with increased production.

All the best and only the best to you and little Amelia,

 

[Amelia_mom]

hi Cris and Emma

Thank you for your kind thoughts and prayers for Amelia and us. I am comforted to know that there are very special and strong people out there who have been through what Amelia is going through and are doing well. Your positive thoughts has encouraged me to be strong.

God bless you all.

 

[gijanet]

Hi, Dawn..........

Hi, Dawn..........

Just wanted to welcome you to the group, from one parent to another. I am relieved to read that Amelia finally is doing well. We, too, spent a long time in the hospital at birth...........eight weeks, but I think you have us beat. I think Emma's Chloe more closely parallels your situation with Amelia, but my daughter, too, just had a valve implanted this summer. Katie is five and a holy terror. Other than constantly keeping me on my toes, she is doing reallly well.

If you are interested in any pediatric heart groups, let me know and I can forward you someof those links. It is, however, somewhat rare to encounter even CHD kids with mechanical valves. Fortunately, I found this group. They are so wonderful and supportive. As a matter of fact, they are thinking about putting in a 24 hour crisis hotline just for me................I'm just kidding on that, but they are truly wonderful and very knowledgeable and a great sounding board.

Is the mitral valve problem Amelia's only CHD? I hope so. Normally, a CHD kid has reflux and feeding issues, but, hopefully, AMelia will not suffer from those. If you have any more questions, please ask. The first year was our worst, and I was so full of questions. P.S. I have a wonderful online friend from Singapore. Her child has a CHD, but a more complex one and comes to the US for surgeries. If you are interested in "meeting" her, then give me a shout and I will hook you up with Lalaine. Many hugs. Janet

 

[Debrinha GT]

Mitral Valve Replacements

Mitral Valve Replacements

Hi! My name's Débora and I live in Brazil. I'm also very sorry to hear that you and Amelia are having to go through so much! Although my story's quite different, i thought you might find it helpfull to know so, here goes:

Despite not having access to all the pertinent information concerning my surgeries (as Brazilian doctors, especially the older ones, are not always willing to share everything they know with their patients) I will try to outline as much as I can.

I was an irritable child who tended to get worked up over the least little thing, flying off the handle frequently. When I was seven, I began to feel a lot of pain in my joints and to cough ceaselessly. At the time, doctors took this to be growing pains and a persistent flu. In those days, people did not have as much access to information on how to deal with this or how to recognise certain symptoms and, as was normal at the time, the situation was not taken so seriously. Then I got worse and went to see my paediatrician, who in turn recommended that my mother should take me to a cardiologist (Dr. Silo᠓inger Bonescki). She had been a member of Professor Dr. inEuredes Jesus Zerbini’s team at the Beneficiencia Portuguesa Hospital in SPaulo, so I was in good hands. She diagnosed my condition as rheumatic fever, already compromising my mitral valve. I remember that I spent the next two years in bed and being put on a salt free diet owing to the retention of liquid in my system. At this point, my heart was enlarged and I was on fifteen types of medicine, none of which had any positive effect. Therefore, I was sent to S㯠Paulo to see Dr. Zerbini himself who was very straightforward. After running a battery of tests, he informed me that my chances of survival were minimal even with surgery, but without surgery I would be unlikely to last two months. Clinically, I was in a terrible state, weighing at age ten only 20kg (about 45 lb). I had surgery on 14 August, 1975 following a month in hospital. During surgery, a lesion was found on my tricuspid valve, which was promptly corrected. Nevertheless, setbacks were inevitable but with no permanent damage except an enlarged left atrium. My heart stopped beating twice and my kidneys failed for eighteen hours. I only came round in the ICU after two days and remained there for three more until I could be transferred to my room where I was carefully looked after for another month before being discharged. As mine was the first successful case of its kind in the country, people who didn’t even know me came to visit, and doctors from other teams came to have a look at the "Zerbini case" that was being talked about.

As time went by, the duramater valve that had saved my life for so many years began to show signs of failure, and on 15 April, 1980 I had surgery once again. This time, everything went well as the surgery had now become somewhat more routine. However, I did spend a whole month in hospital to make sure since I live in another city and in those days they couldn't have done much for me here in Curitiba. Once again, I went back to my normal life and my studies which had been seriously disrupted owing to all my health problems.

In 1995 following an echocardiogram, I was told by my cardiologist Dr. Ademar Moraes de Souza that I would have to have my valve replaced once again. I was very upset about the whole thing as it interrupted other plans. I was trying to get pregnant with my first child, and this factor affected my choice of valve and I opted for a biological one (bovine pericardium). On 19 December, 1995 I was back in the operating theatre in the hands of Dr. Francisco Diniz Costa who headed the team at Santa Casa de Miserica hospital in Curitiba.

Just under two years ago I was told by my cardio that my valve was beginning to deteriorate, and although I knew that was bound to happen sooner or later, that was still a shock when I actually had to face the fact. But instead of getting depressed over it, I decided I had to do something in order to carry on with my life until the time comes. That's when I found VR and not only have I had all the emotional support and answers I've needed , but I've also made many nice friends here!! I'm still in the waiting room for my fourth replacement but for the time being, I'm trying to enjoy life as best as I can.

I'll keep my fingers crossed for little Amelia! Please, keep us updated on her condition whenever possible and above all, have faith!!!!

Débora from Brazil







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[Amelia_mom]

I hope you find Emma's post reassuring. This website is just an amazing forum for sharing our experiences. I can only offer prayers and well wishes and perhaps a bit of advice on milk production. It sounds like you will be discontinuing the fennugreek, although maybe someone will come along to offer advice on that. The only way I know (and I think the safest way) to increase milk production is to nurse more often. If Amelia can't help you out with that, use a pump in between feedings and donate the milk or freeze it. Make sure you get enough liquids and calories yourself and try to rest (probably easier said than done in your case ) and your body will respond to the increased demand with increased production.

All the best and only the best to you and little Amelia,

hi P J

Thanks for the tips on bfg. Yes, I have stopped taking fenugreek and those milk when I took the herb cannot not be given to Amelia. I just have to be safe. Nevertheless, the lactation consultant has a patient taking wafarin who had a c-section and even took fenugreek after the delivery to increase her milk supply. But sinced Amelia is so tiny, I cannot take any risk.

I have tried to increase pumping every 2 hrs instead... and I am so tired. Hope to keep the breast milk supply.

The doctors are increasing her expressed breast milk 1 ml per hrs everyday. She is taking 19 ml/h. It's so little but they are going slow to be sure she can handle the excess fluid. So far she is taking it well and passing out lots urine and motion (typical of any baby on breast milk).

That's about all.

 

[Amelia_mom]

Is Amelia on a permanent pacemaker or just the temporary pacing wires still?? A pacemaker is not something to worry about even if she does need one. Chloe is likely to need one at some point as they are quite commone in children with the kinds of CHD our girls have and I know so many children with them and they are all doing extremely well.

Chloe also suffered with temp changes and heart rate problems post op. Both are common and will probably settle in time, if the heart rate doesn't, there are drugs to control heart rhythm that are very effective, even in babies as small as Amelia.

QUOTE]


hi Emma

Amelia's pacemaker is the temporary pacing wires. Last night they took off the pacer off her. Apparently the pacer was not sensing her heart beat and was pacer her so it's like causing the irregular HB. She is such a little fighter. She lost so much weight it pains me to see her reduced to just skin and bones. Her birth weight was 3.81 kg and after 3 months and 3 OH surgeries she weighs 2.88!

Her HB is still pretty high at 140ish to 150ish. Does it slowly drop when the heart figures out a optimum way to pump?

Thank you for your encouraging words. It great to know your precious little Chloe is doing so well.

God bless you and your Chloe.

 

[Amelia_mom]

hi Emma

Amelia's pacemaker is the temporary pacing wires. Last night they took off the pacer off her. Apparently the pacer was not sensing her heart beat and was pacer her so it's like causing the irregular HB. She is such a little fighter. She lost so much weight it pains me to see her reduced to just skin and bones. Her birth weight was 3.81 kg and after 3 months and 3 OH surgeries she weighs 2.88!

Her HB is still pretty high at 140ish to 150ish. Does it slowly drop when the heart figures out a optimum way to pump?

Thank you for your encouraging words. It great to know your precious little Chloe is doing so well.

God bless you and your Chloe.

 

[Amelia_mom]

hi Debora and Janet

Thank you for sharing your experience. Amelia is doling better today. Tomorrow they will try to take off her ventilator totally. I pray that her heart would be able to cope without any ventilator support.

Today she is off Milrinone but still needs a handfull of other drugs. I am praying that she also gets to gain more weight. My stash of expressed breast milk (EBM) for Amelia has been carelessly spoilt by my sister in law who turned off the deep freezer for almost 10 - 12 hours. Since Amelia is so delicate, I am not risking the 2 weeks supply of EBM for her. Now I am pumping every 2 hours. The good thing out of this is I am FORCED to keep up to her needs everyday with fresh EBM and she is increasing her feeds and is gaining a little weight everyday!



Emma,

Did you managed to nurse Chloe? If u did, how did you manage? My lactation consultant advises me to continue and try as hard as I can because EBM is so much more gentler on her stomach and less stressfull for her heart.

Every now and then I just break down when Amelia is not doing well (but actually is getting better on the whole, she just needs more time) So this time it's the weight gain and her feeds plus the side effect on my diet and hence EBM with warfarin is the issue.

I will keep you all know of how she is doing.

 

[Debrinha GT]

Hello again!

Hello again!

So happy to hear she's improving! I'll continue to keep you and Amelia in my prayers! Take care!
Débora

 

[Lynlw]

Debora, Thank you for sharing your journey. I'm glad to see you are doing so well.
Emma, I'll say some prayers that Amelia, is able to get off the vent tomorrow. I remember your first post and was so happy to see you back, I've been wonderring how little Amelia was doing.
I know how it feels when you need to have a little break down and then regroup. Justin(he's 17 now) had alot of problems after his 2nd surgery when he was 18 months and was in an out of the hospital for the next 6 months, I wouldn't wish that on anyone.
I can't believe your SIL ruined your milk supply, I didn't breast feed, but I was wonderring, I know in the US some mother's donate breast milk to others who babies need it, is there anything like that in Singapore?
Lyn www.caringbridge.org/nj/justinw

 

[KristiinSD]

Glad to hear that Amelia is doing better

Glad to hear that Amelia is doing better

As for increasing breast milk production, I found that drinkning enough fluids was essential for me. I had a friend who swore that a beer was helpful, but for me it was all about enough fluids...Good luck!

Kristi
mitral repair 11/30/05

 

[Amelia_mom]

Hi Lyn and Kristi

I am drinking lots of water before and after each pumping session. We went out to get a heavy duty electric pump, seems to at least stop the dip for the time being. At the moment what I really need is lots of sleep and rest. So the family is compromising now with a few meals from the take-out or delivery. It's not good but the girls don't mind the MSG

The ICU don't allow donated EBM for critically ill babies here. Also the dietician wants me to keep my diet consistent for Amelia's INR sake. She is on warfarin already. Also the doctors are still trying to figure out her daily intake of warfarin that keeps her in her theraputic range.

Today, they did not take off the ventilator cos they want her to put on more weight first before letting her lungs worker. She is 3.34 kg - really VERY TINY as a 3 month old compared to her birth weight. I am waiting for the next 2 days when they'll weigh her again. This time my husband and I will be guessing who comes closest to the next weight.

Thanks so much for your encouragement. It's good to know that these special children are fighters and they DO get back on track with life.

 

[Amelia_mom]

hi Janet

Can you forward me the url for the group of people with kids with CHD? Hope to get to know how they manage and cope. Also can you email your online friend from Singapore who also has a child with CHD? I was hoping to "meet" up with her if possible. Otherwise a phone call will be also good.


Thank you.

 

[Emma]

Dawn,
I did manage to breast feed Chloe but only for about two weeks as she just got too tired feeding that way and also, at the time it was quite important for us to know how much she was taking in which I could monitor with a bottle. So I switched her to bottle milk and she did really well on it. But I do admire you for keeping up with it. Do what you feel is right for you and Amelia, breast feeding and nursing are very individual things and what works for one person may not for another.

Also, if its of any interest to you, I belong to a very, very supportive group and informative group. The address is www.heartline.org.uk, then click on 'message boards'.

Love Emma
xxx

 

[Lynlw]

Emma, I'll email you a few links too.In case Janet doesn't get back on soon, they will come from a ddog117 email address, I think the Mom Janet is thinking about lives in the Phillipines, but I could be wrong, Lyn www.caringbridge.org/nj/justinw
ps have you set up a page for Amelia yet? both caringbridge.org and carepages.org are free for families w/ medical problems going on, I think they are really helpful to keep track of everything going on and update friends/family and love to read the guestbook.