Amayah Hope Lobo Update - June 23, 2009

Comment

Comment by Amy Burke-Medina on August 28, 2009 at 6:09pm

Just wanted to say that Amayah is so beautiful and sounds very strong. She must get that from both of you. As a parent of a 14yr old with HLHS, I can only offer a couple of tips that we did not have at the time our son was going through this stage. First, his growth spurt around 2-3 mos took us by surprise and he outgrew his meds(digoxin, captopril and can't remember about the baby aspirin). Since Nick was the first one to survive down here at this hospital, they did not know that his symptoms of heart failure were actually because he had gained weight and needed a higher dose of medications. They had literally given us 6mos for him to survive until the surgeon who performed the surgery came by and realized the problem instantly. Once the meds were increased a little, he was fine. Also, the digoxin played a strong role in Nick needing caps on his teeth. The sweetness in the liquid(she may be on some other form) being administered every single day since post-op, took a toll on several of his teeth and the same hospital where he had the Norwood, also put on the caps. He has been on the pill form for some time now and still just chews all three meds every morning(yes, now we are just one dose daily). The best of luck to you and Amayah!!

Comment by Maddie Griffin on August 17, 2009 at 11:21am

Hi there,
Just thought I'd pop by & say hello. Babies are exhausting - nobody tells you til its too late eh!? Try not to worry bout Amayah's feeding I don't know a baby that hasn't gone through a stage of difficulty with it. Keep your spirits up & get as much rest as possible, you'll need it when she starts crawling!!
Take care, love n hugs xxx

Comment by Beatrice R R on August 8, 2009 at 1:43pm

Hi, my baby also takes captropril. He takes 0.3 ml every 8 hrs. Just some advise if you are ever given Digoxin, do not give it along with captropril as both of these lower blood pressure; then give them apart at least one hour. A very good nurse at the hospital gave us the advise. It is better to be on the safer side.
Our baby is 2 months old and he only weighs 8'5' lbs. He was 7'2 when he was born. Doctors actually expected him to gain more than that. He had a CT Scan last Monday. Doctors believe that his aorta valve is constricting and that this may be preventing him of growing faster. Today they called us and said we have a pre-op consultation on August 28th. I feel very uneasy just thinking what they are going to say. I try to be strong but you know it is always hard. The other day at the CT Scan the doctor from the anesthesia said that there were "higher risks" he said "I don't want to scare you but this is real and i have to tell you that there are higher risks..." IT WAS SCARY We felt powerless, tremendously sad, the 20 min. he was in there we were in pain and praying for him just to come well out of that room. We were very happy when they told us he had waken up. It is as if you can live, breath again. I am scared for his operation. I PRAY AND HOPE... for HIM and for ALL the babies and children that have any disease. God knows that we suffer and he is the only one that has the last word and decision. I read a story (when I was looking for people with babies with similar problems) about a mom who tells how the technician that was doing their baby's eco yelled telling everyone to come watch how her heart was healing right in front of him. The baby's VSD closed just right in front of them. All we can do is pray and give them all the love we can. Always ask all the questions that you can imagine about what they (doctors and nurses) are telling you, do not ever be afraid to say anything. One time one of the nurses put the NG tube at 36 when it was supposed to be at 24 I told them. THey were like "Oh don't worry it just curls up in the stomach, it does not hurt him. Then they had to take him for and Xray that day for a stomach problem not related to the heart or the tube. When they came back the nurse said "oh yea we are pulling out the tube it was a little bit too long" Then at night the other nurse said "How is he doing? I heard! His tube was all the way down in his duodenum" Can you believe that????!!!!!!!!!!!!!!!!!!! The other nurse had not told us that. This is why you have to observe everything carefully. We have to trust doctors and nurses but they are human and make mistakes too. Therefore watch out and pay attention. Thank you for sharing and for reading. HOPE AND PRAYERS TO YOU YOUR FAMILY.
-Beatrice