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| Million Dollar Babies Hypoplastic left heart syndrome babies |
| Public online group |
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| Hi Steph! My name is Lisa and I have an almost 9 month old baby boy named Joshua. He was born with truncus arteriosus, a rare congential heart condition. I know this group is for HLHS babies, but I thought we might be able to share our experiences. So far, my little one has had one surgery at four days old, but will need more. How many operations has your little one gone through? I know someone who's baby has HRHS and she's gone through 2 surgeries (she's also almost 9 months). She expects the third surgery to be after her 1st birthday. Did you find out that your baby had HLHS before or after birth? |
| Posted by Lisa on 12/27/2007 11:32 PM
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| Hi Lisa, My son will be 9 months old tomorrow. He has had two surgeries already and will go in for his third and hopefully final around 12-18mos. We have a surgery coming up but that is because his ring and middle fingers are together by skin and we are having those separated. I have heard of babies iwth HRHS but its even rarer than HLHS. I was not prediagnosed we found out about 14 hours afterwards that something was wrong although my husband new something was wrong because he was breathing funny but they told us it was because he was a c-section baby. He is doing great now. He weighs almost 19lbs and is 29 inches long. How is you little one doing? |
| posted by steph on 12/28/2007 10:25 PM
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Joshua is doing great too! The doctors are really surprised at how well he is doing. He is a little over 18 pounds. I'm not sure on his length. We have his 9 month check up coming up in Jan. We also have a cardiologist appointment in Jan. The conduit that was placed in him will not grow with him, so he will need a couple/few surgeries throughout his life. We really don't know how many at this time. The other issue he has is his truncal valve is narrow and leaky so it too will eventually need to be replaced. He was diagnosed with moderate to severe truncal leakage when he was born, and they thought they might have to replace it at birth. When the surgeon went in, he found it worked well enough to "buy some time". Any time we can get out of the valve would be better than having to replace it at birth. At 6 months, he had an echo and everything looked great! They are hoping to replace the conduit and replace the valve at the same time. At this point, there is no set date for surgery. We just continue to monitor him.
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| posted by Lisa on 12/29/2007 12:18 PM
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I will pray that all is well before, during, and after you son's surgery on his fingers. My son has a toe that has been crooked since birth. I'm concerned he will have trouble walking on in, although as it grows, it doesn't look as bad. Only time will tell.
I knew about Joshua's heart condition at my 18 week ultra sound. We had a lot of time to research it, and also a lot of time to worry about it. It must have been a shock for you. Did your son have to have surgery right away? Was he able to have it at the same hospital in which you delivered? How long was he in the hospital? |
| posted by Lisa on 12/29/2007 12:28 PM
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| BTW...happy 9th month! |
| posted by Lisa on 12/29/2007 12:29 PM
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| Tristan was taken from me at about 16 hours down to the NICU then at about 24 hours he was transported to Children's National Medical Center where he was placed in the Cardiac Intensive Care Unit for 7 days then he had his first surgery. After surgery he was back in the CICU for 6 days and moved up to the PICU then from there after 3 days he went to the Heart and Kidney floor for 4 days. He was in the hospital for about 23 days. Childrens is an amazing place. WE have so pleased with them and the doctors he has. HIs surgeon is on of the best around. We were shocked but after meeting other parents who knew about the condition before hand I am glad I didn't know. The only thing I miss so much is not being able to hold him or have him home for the forst month of his life. Thanks for the prayers we will need it. I am already starting to get nervous and its only his fingers this time. |
| posted by steph on 12/30/2007 12:15 PM
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| I know what you mean about Children's hospital being so wonderful. I delivered at Motts Children's hopital (It is connected to the UM Hospital in Ann Arbor) It was a wonderful place...if you can call a hospital wonderful. Everyone from the surgeon to the people working in the cafeteria were very caring. I'm glad to hear your experince with the hospital was positive like mine. It really helps! Our surgeon is great too. He's very down to earth and personable. He answered any emails I sent him within a day! People from all over the world come to this hospital for surgery. I felt so lucky to live only an hour and a half away. On what day is Tristian having his surgery? |
| posted by Lisa on 12/30/2007 05:30 PM
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I'm sorry my responses are disjointed. I can't see what you wrote when I reply, and then when I post I reread your entry and I think of more to write! :) (Also, sorry for mispelling Tristan)
When I delivered Joshua, I delivered in the ER room. The doctors wanted it this way so everything was ready in case there were problems. Joshua was taken right away as he wasn't breathing well- he was blue. He was then intubated. He was in the NICU for one night and then transferred to the PICU because they had 2 life flights coming in to the NICU and needed the bed space. At 4 days old (the day after Easter) he had his surgery. He was in the PICU for 10 days. He then stepped down to moderate care and then general care. He was released from the hospital one month from the day he was born. During this time we stayed at the Ronald McDonald house, another great, helpful place. Was you hospital close to home? |
| posted by Lisa on 12/30/2007 06:00 PM
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| I was able to hold Joshua for the first time when he was 4 days old. He was hooked up to a bunch of stuff and it took 3 nurses to get him out of his bed and into my arms. I held him for about an hour before his surgery. It was a wonderful hour and a strange hour at the same time. I was holding him, but not snuggling with him because he was hooked up to so much stuff I couldn't get that close. I got to hold him again after he went down to regular care. He was still hooked up to machines, but he wasn't intubated anymore so it made it easier. Eventually I learned how to take him in and out of his bed by myself. When was the first time you were able to hold Tristan? |
| posted by Lisa on 12/30/2007 06:08 PM
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| Hey Lisa, WE were at Childrens in Washington DC and we too stayed at the Ronald McDonald house. That was so reassuring to be able to the close because I had a C-section and my husband went back to work the week before his surgery. We live about an hour away from the hospital so it was nice because they have a shuttle and I couldn't drive. So I would get up every morning and leave at 8ama nd someone would bring me back about 10pm. Those were long days. It wasn't until Tristan was 14 days old that I got to hold him. They had to take out his central lines before I could hold him because they didn't want the lines to get messed up. When i got to hold him he has his pacing wires in but wasn't hooked up, he was on a nose canula, had a feeding tube in, was hooked to monitors and had 2 ivs still in. It was hard but I was so happy that I got tohold him. It was tuff though because he wasn't used to being held so he wouldn't let you hold him very long. But he changed once we got to bring him home. COming home was tough for me. I was a little overwhelmed but I was just glad to be home. We got an Angel Care monitor that detects movement and that maid life so much easier because he didn't come home with anything. That way if anything happen the alarm would sound and we would be able to react. Tristan was really ashy color when he was born and that's how my husband knew something was wrong but they didn't listen so I will never deliver at the hospital I did again. Tristan is now trying to walk, he skipped the whole crawling thing because he doesn't like to be on his stomach. Does Jashua like tummy time? IS he behind at all developmentally? They told us when we had Tristan evaluated that he was about a month behind but if you look at things he was in the hospital almost his whole first month. We also think part of the reason he won't crawl is because he can't spread his fingers out and he had an extra bone in his hand that bothers him when he opens his hand all the way. Thank goodness we are getting all that fixed very soon. I have it scheduled for the 4th but my husband got a new job and new insurance so we have to call tomorrow and make sure that they will approve it and if not I will have to reschedule. DO you find it hard to leave Jashua with other people? I am not working anymore because I can't put Tristan in daycare because there are too many jerms. If he gets sick its back to the hospital again. Take care and I will talk to you tomorrow. |
| posted by steph on 12/30/2007 08:58 PM
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That must have been hard having to wait 14 days. Were you at least able to touch him? We could stroke his head and feet. Well, the foot that didn't have the heart monitor on it. I really didn't expect to be able to hold him because of all of the wires, but the social worker asked me if I wanted to and of course I did. The three nurses had to be really careful not to undo anything.
Just about every morning my son and I (he was 3 at the time) walked to the hospital from the Ronald McDonald house. When my husband got off of work we would all go back in the evening. My husband actually works closer to the hospital than he does our home! so it worked out well. It was really hard having a 3 year old with us, but I didn't want to leave him with anyone else. I didn't want him to think mommy and daddy went away to have a baby and left him. I wasn't at the hospital as much as I would have like to have been because of him, but i guess it all worked out. I wasn't driving either when I first got out of the hospital because I pulled a muscle (while pushing) and couldn't walk. When Joshua was in general care I would stay at the hospital while my husband and son went back to the Ronald McDonald house. I would stay at the hospital until 12 or 1 in the morning. I wanted to learn how to take care of him for when he came home. I had to learn how to use/replace a NG tube. He had one for about 2 weeks after he came home. I also had to learn how and when to give meds. How did you hear about the angel care monitor? I've never heard of it, but might have liked to have had one. We did have a home nurse come to monitor him 1-2 times a week for about 3 weeks. He would take his oxygen level and weigh him and answer any questions. The hospital offered it and our insurance covered it.
Joshua does okay with tummy time. He is trying to crawl, but hasn't been successful. He likes to stand though. I think he' developmentally on target right now. I have him enrolled in a program called Early On. It's free, offered through the county/ state?maybe. It's for children birth to 3 who are behind or who have a pre-existing condition that could cause them to be behind. A nurse will come every 6 months (or more if you want) to evaluate him. They also offer playgroups (he has to be 12 months though) and they have family nights out once per month. It's a nice program. Do you have anything like that where you live?
No, I do not leave Joshua with others on a regular basis. I have only left him a small handful of times with my mother for no more than 2-3 hours and my mother-in-law for about 1/2 hour once in an emergency. I have currently left my job and am staying at home with both my boys. I just couldn't expect a daycare to take care of him, nor would I want to. I do worry about him becoming ill. He has had one upper respitory infection at 7 months and that's it. When my other son was in daycare, he would get a few ear infections. I just want to limit this with Joshua. I understand your concerns.
Have a great New Year's Eve. Are you doing anything special? |
| posted by Lisa on 12/31/2007 01:03 PM
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