Echo today

Well, today Ethan had his echocardiogram which is the first of two tests he has to have before his surgery. They were able to sedate him with an oral medication, so he didn't even have to be poked this appointment. The cardiologist said that everything looked good and that there were no surprises found with his echo. It took Ethan a little longer to come out of the sedation than I had expected and since waking up he has been pretty sleepy and a little grumpy. The nurses have said that this is all normal.

The cardiologist said that he is definitely ready for his Glenn surgery due to his good weight gain. At this appointment he weighed 14 lbs even which was actually down from his visit with the pediatrician last Monday when he was 14lbs 50z. This doesn't really surprise me seeing as how he really struggled to eat from the bottle for the 5 days when he had blood in his stool. I hope he doesn't have a fit in the hospital when I can't nurse him.

Well, even though the MD states that of the 3 surgeries this is the "easy" surgery, it still scares me to death. It was hard to see him sedated and not acting like himself while coming out of sedation. I just hope he doesn't remember any of this when he gets older.

His next appointment is this upcoming Tuesday and this will be the cardiac cath. This is a test where they place a catheter in his femoral artery and thread it up to his heart so they can get exact pressures from his heart and lungs and to also get a better view of his heart structures. This test is obviously more invasive than today's appointment but it still an outpatient test as long as there are no complications.

Again, we appreciate all of the thoughts and prayers that are coming our way. We truly could not do this without all of the love and support that we've received. Thank you!

---Allison

Just a quick update

Ethan seems to be doing much better now. He no longer has any blood in his stool. I've talked with the Pediatrician and she says we can start breastfeeding again, but if he again has blood in his stool I will have to cut out all dairy products from my diet. I would be willing to do anything because he loves to nurse and I love him to be happy. When I am nursing, Ethan starts out in his crib at night but always ends up in my bed after his first night feeding, however, when he had to take the bottle he would get very frustrated when I would hold him close. Last night was when I could start breastfeeding again and it was so nice to just snuggle.

I started playing some lullaby CD's this morning for Ethan and I hope to get him familiar with these before his hospital admission. My thoughts are that these will bring some comfort to him while he is unable to be held. Although these CD's are very soothing and sweet, they seem to get me really choked up. I sometimes think they are preparing me more than they are preparing Ethan.

I don't anticipate anything exciting happening before his Echo this coming Wednesday, so I will probably write again then.

----Allison

It's getting closer!

Well, we finally have internet access at home again. I've been wanting to keep this site updated more frequently and was unable to until now. While Ethan is in the hospital, I will be making daily posts and will otherwise try to make weekly posts or when there are special events/appointments.

Ethan has continued to do very well in his recovery and was able to get off of his oxygen after only a few weeks home from surgery. We had his first cardiology appointment on July 25th at which time they decided to get the process going for his next surgery. Ethan was 13lb 3 oz at this appointment and his oxygen sats were still between 75-85% on room air most of the time but he was having episodes where he was starting to drop into the low 70's. He was starting to get sweaty when he would eat and his lips, feet, and fingers were beginning to look purple more frequently. It is always a relief to see the cardiologist and get reassurance that everything is going as expected. It is hard however, to see him doing so well for so long and then start showing signs that this next phase of the surgery is now needed. We were told that the faster he grows the sooner he will need the next surgery because he will outgrow the current shunt from his heart to his lungs.

We were able to have him blessed in our church on August 5th. This was his first and last appearance in church until next spring per doctor's orders. This was a wonderful day and again, we were grateful for all the showing of love and support.

The day after he was blessed he had to be put back on the oxygen and will have it on until his next surgery which is scheduled for Sept. 10th. He will have a sedated Echocardiogram next week on the 29th of August and will also have a cardiac cath on the 4th of September prior to his surgery. This will give the surgeons specific information on his anatomy and lung pressures before his surgery.

Even though the odds of success are very good with this 2nd surgery, any open heart surgery is scary. He still has to have his sternum re-opened and to go on the heart-lung bypass machine which scares me to death. They say that they try to get him off of the ventilator the same day of his operation and that this hospital stay should be about 10 days if things go well. It is so hard to imagine sending him back to the hospital and to have him go through so much pain. Even though I knew it was coming I just sat and cried when they called me with the date. I just don't want to do this again. There are so many conflicting emotions of knowing that the surgery that I dread is the only thing that will keep him with us on this earth. It is hard to hate something that you are so ultimately grateful for.

This last Sunday (August 19th) Ethan began having blood in his stool. This of course really concerned me and when I took him to his pediatrician they told me they thought he might be developing a protein allergy and that I needed to stop breastfeeding him for about 5 days and start him on Nutramigen which has the proteins already broken down into amino acids. This will hopefully let his intestines heal. He hasn't had any bloody stools since Monday. I hope I will be able to breastfeed him tomorrow because he absolutely hates the bottle and fights his feedings. It is hard to see him struggle and brings back all of the old emotions that I had when he was born.

I've been trying to emotionally prepare both myself and Ethan for this next surgery and hospital stay. Yesterday I went to the store to get some soft little blankets and soothing lullabies that he can take to the hospital with him. I'm hoping that he will get used to the sounds and smells of these things from home and will comfort him when I can't hold him.

I will try to make posts every couple of days or so up until his surgery since there will be more going on now. Please feel free to post any comments. We would love to hear from everyone.

---Allison