Boom boom, boom boom, boom boom, The sound of a heartbeat. I was laying in the bath earlier this evening, with my head half submerged in the water listening to the sound of my own heartbeat. Boom boom, boom boom, boom boom. Taking nice deep calming breaths and relaxing. It all seems so simple doesnt it, this breathing and heart beating lark. After the day I have had I can not help not to think about it.
To catch up, I did have Ethans bug after all and I was ill for a few days. Work still had to be done ofcourse, while all that was going on the new house we are moving too still needed to be painted.
I started the work on the house and then left the majority of it to BF so I could concentrate on Ethan. I tend to go to the house late afternoon if at all to help out.
Ethan is now spending 3 hours a day NG feed and the remainder NJ and that will be increased with the hope I guess to get him to NG completly over this coming weekend.
Yesterday I was told that today we have an appointment at Great ormond street for his heart. As Ethan is on medication for pulmonary Hypertension they wanted to investigate. As far as I was aware he was on meds for PH however GOSH orginally did not find any evidence of PH, however he seemed to be responding to the treatment so therefore they continued with the medication.
I left for GOSH with my two nurses in tow (senior nurse and student nurse, both lovely.) at 8.30am this morning. I had packed Ethans bag with his nappies and change of clothes much as you would a normal baby. Just we had to add a SATS monitor and meds to the list.
He even went in a car seat for the first time and also for the first time was able to be out in the open! He was actually outside for the first time. He reacted confused to begin with and was unsure but he seemed to like it! He was able to see out of the windows of the ambulance which he liked and he was very good both journeys, hardly crying at all!
Going back to GOSH felt strange after spending all that time there just a few weeks back. We got to the cardiac ward and immediatley was seen by the consultant, two nurses and a registrar. They took us straight for the ECHO which is much like a scan but for the heart.
I laid down on the bed and Ethan was on my (trying to keep calm) tummy - face up. He hated the scan and screamed the whole way through. It felt kinda like the scan I had so many times during the pregnancy as you can imagine!
I could hear the reg. saying he has a small ASD but other then that was concentrating on Ethan. The consultant came and had a look at the scan for a moment. All the while Ethan was screaming.
The consultant said to the Reg. "it is time to stop now" The registrar did not want to, she felt she had more to see. The consulant did nto allow it and he firmly told her that the patient had had enough!
We went back to the ward calming Ethan down (who promtley feel asleep - completley worn out by it) and then was told by the doctor that Ethan does have PH. This means he has a narrowing of the blood vessels that lead from his heart to his lungs, and that the right side of his heart is enlarged because of this. The drug meds he is on is working so they were making no changes but we need to be seen by him in 6 weeks time and then every 3 months until he is better. He thinks this will be until he is 5 or so. The ASD they were talking about is a small hole, he thinks it is causing no issue at the moment but this may change in the future where they may have to operate but hopefully not until he is 4. He will be a long term patient of GOSH from here on in! And we hadnt even been to the lung appointment yet! (yet to be booked).
Though I was shocked to find yet another problem, I have to focus on the positive, the issue is only moderate not severe, and it can be treated by meds and he is responding to meds. All we need is Ethan to grow and hopefully he should grow out it. Hopefully!
So you see this breathing and heartbeating lark can sometimes be a bit of a struggle!
To catch up, I did have Ethans bug after all and I was ill for a few days. Work still had to be done ofcourse, while all that was going on the new house we are moving too still needed to be painted.
I started the work on the house and then left the majority of it to BF so I could concentrate on Ethan. I tend to go to the house late afternoon if at all to help out.
Ethan is now spending 3 hours a day NG feed and the remainder NJ and that will be increased with the hope I guess to get him to NG completly over this coming weekend.
Yesterday I was told that today we have an appointment at Great ormond street for his heart. As Ethan is on medication for pulmonary Hypertension they wanted to investigate. As far as I was aware he was on meds for PH however GOSH orginally did not find any evidence of PH, however he seemed to be responding to the treatment so therefore they continued with the medication.
I left for GOSH with my two nurses in tow (senior nurse and student nurse, both lovely.) at 8.30am this morning. I had packed Ethans bag with his nappies and change of clothes much as you would a normal baby. Just we had to add a SATS monitor and meds to the list.
He even went in a car seat for the first time and also for the first time was able to be out in the open! He was actually outside for the first time. He reacted confused to begin with and was unsure but he seemed to like it! He was able to see out of the windows of the ambulance which he liked and he was very good both journeys, hardly crying at all!
Going back to GOSH felt strange after spending all that time there just a few weeks back. We got to the cardiac ward and immediatley was seen by the consultant, two nurses and a registrar. They took us straight for the ECHO which is much like a scan but for the heart.
I laid down on the bed and Ethan was on my (trying to keep calm) tummy - face up. He hated the scan and screamed the whole way through. It felt kinda like the scan I had so many times during the pregnancy as you can imagine!
I could hear the reg. saying he has a small ASD but other then that was concentrating on Ethan. The consultant came and had a look at the scan for a moment. All the while Ethan was screaming.
The consultant said to the Reg. "it is time to stop now" The registrar did not want to, she felt she had more to see. The consulant did nto allow it and he firmly told her that the patient had had enough!
We went back to the ward calming Ethan down (who promtley feel asleep - completley worn out by it) and then was told by the doctor that Ethan does have PH. This means he has a narrowing of the blood vessels that lead from his heart to his lungs, and that the right side of his heart is enlarged because of this. The drug meds he is on is working so they were making no changes but we need to be seen by him in 6 weeks time and then every 3 months until he is better. He thinks this will be until he is 5 or so. The ASD they were talking about is a small hole, he thinks it is causing no issue at the moment but this may change in the future where they may have to operate but hopefully not until he is 4. He will be a long term patient of GOSH from here on in! And we hadnt even been to the lung appointment yet! (yet to be booked).
Though I was shocked to find yet another problem, I have to focus on the positive, the issue is only moderate not severe, and it can be treated by meds and he is responding to meds. All we need is Ethan to grow and hopefully he should grow out it. Hopefully!
So you see this breathing and heartbeating lark can sometimes be a bit of a struggle!