2 months old!

Hard to believe our little boy is 2 months old today! So much has happened in his life since he was born! Yesterday, we went to the pediatrician for his weekly weight check - he's now 11lb. 4 1/4oz. (5.13kg). That's only 5 oz. gained this week, as opposed to 9 oz. gained last week, but Nurse Kay at UNC said it's ok. His pulse ox this week has been between 73-81%, so it's slightly improved from last week. We also ordered a digital scale from ebay, that should be arriving in the next week or two, so hopefully we won't have to go weekly to the pediatrician for his weigh in any more. Also, with the home scale, we won't have to have a home nurse come weigh him - which was our other option, but our current home nurse doesn't have a digital scale (which UNC requires for the weekly weigh in) and no other home nurse company has a digital scale either, so home nursing is out of the question at this time (plus it was going to cost $102.95/visit).

Tomorrow morning at 8:30am we go back to UNC for another swallow study. Last swallow study was done about 6 weeks ago, and at that time, it was taking him 20 minutes to drink a 2 oz. bottle, and it was only the last couple of minutes where he started falling asleep when he was silently aspirating (swallowing the wrong way and not coughing). Well it only takes him 5 minutes to take a 3 oz. bottle now and he doesn't get tired or fall asleep so we think he's ok. He has the ability to cough, and it's rarely when he's eating so we think he's ok. If he passes, then we can take him off the thickened feeds and hopefully I'll be able to nurse him more often! Right now, I'm only allowed to nurse him once a day, and when he does nurse, he latches on right away and does great, although he falls asleep after about 10 minutes.

So today's prayer request is that the x-ray swallow study goes well tomorrow morning. Also, next week, we've got 2 appointments - next Wednesday after his weigh in, he'll have his 2 month checkup and also get his immunizations. Then next Thursday, we go back to WakeMed to see his cardiologist for his monthly heart checkup.

And, as promised, I finally have some new pictures of Ethan for your viewing pleasure! P.S. we'd love to hear from you. Please click on the comment link at the bottom of each blog entry to post a comment on our site!

Mommy & baby Ethan

Well I thought I could get more than one picture posted but I guess not. I'll try to post more later today.

First Church Service

Well today we braved taking Ethan out in public by going to church today! Doctors orders are to only take him out in public when absolutely necessary (to avoid overexposure to germs) and it was absolutely necessary for us spiritually, mentally, and physically to be back at our own church. It was great to get to hear a biblically sound sermon (unlike the one we heard our last week we were in Chapel Hill) and enjoy some contemporary worship and have some great fellowship time with our friends and even meet some new faces of people who said they've been praying for us. For those of you reading this blog that don't know us, my (Julie) dad is one of the pastors at our church of nearly 2,000 members and he does an excellent job at preaching! He has managed to even slip Ethan into his sermon illustrations a few times so many people have been able to find out about our main website: http://www.ethanmiles.com/ and be able to stay updated through this blog to know how to keep praying for our sweet son.

Please continue to pray that Ethan continues to do well, and wisdom for us about his preventative care. Right now we're trying to sort out what to do about his weekly weight checks that his cardiologist and surgeon are requiring. For these first few weeks that we've been home, we've had a home nurse that has come to weigh him and check his blood pressure and pulse ox, but our insurance year starts over tomorrow (Oct. 1st) and that means we have to start all over with our deductible (we had obviously already met our deductible and maximum out of pocket expenses just with the surgery so the nurse was paid 100% by our insurance!).

The home nurse is great because we don't have to go to the pediatrician each week, and risk being exposed to any of the sick kids. The pediatrician doesn't charge us (or our insurance) anything for just doing a weekly weight check, but the home nurse will charge our insurance for each visit - which will end up costing us more until our deductible is met (the new plan that starts Oct. 1 is a high deductible plan). So you see, we need guidance and wisdom to decide if the extra cost for a home nurse is worth it so Ethan won't be exposed to sick kids at the doctor's office, even though we have been approved to go first thing in the morning, during the first 30 minutes the office is open, before any patients are scheduled.

First Week Alone

Well Mom and Dad are gone and Dan is at work as usual so this is the first real week alone with Ethan. Time to get settled into a realistic daily schedule. Yesterday was so crazy there was no time for an update.

I began the day with Ethan's home nurses showing up 2 hours early (9:15 instead of 11:15 so I was still in my pajamas) and he was already fussy because it was time to eat when they showed up. Fortunately they are only here for about 30 minutes! All his vitals looked good and his oxygen sats were at 82 today (they're usually around 74-75)! He still weighs 9lb. 4oz., same as he did on Friday. After the nurse visit and Ethan was fed, then Gray-c (our dog) threw up on the living room carpet. So I cleaned that up and tried to get online but had connection problems.

At 11am, Dan called and invited me to have lunch with him, and I gladly accepted it as a nice break from the dog. So I packed a bottle for Ethan, and got ready to go and decided to change Ethan's diaper before we left. As if cleaning up after the dog wasn't bad enough, Ethan decided to pee on me and all over his clothes and the couch where I was changing him (including the thick cloth diaper we use for burp cloths). Once that was over and we got all cleaned up and changed clothes, then I noticed another wet spot on the same couch and realized it's where Gray-c threw up again! So I did my best to quickly clean that up so I could get to lunch (Dan wanted me to leave at 11 when he had called me so we could beat some of the lunch hour rush at K&W but now a whole hour had passed. By now, it was time for Ethan's next feeding so I made yet another bottle so I could feed him and still have a spare while we're out.

Lunch was nice - Ethan slept for the whole car ride and lunch. After lunch, we showed Ethan off to all Dan's coworkers. On my way home, I spontaneously stopped by my office to show him off as well. We were there for a couple of hours so I'm glad I packed that extra bottle. Ethan woke up about an hour after I'd been there and was hungry so a couple of the ladies in my office asked to feed him and our receptionist, Carolyn, was the lucky one!

Then we came back home, fixed dinner and had a pretty uneventful rest of the evening. Hopefully the rest of the week won't be so crazy!

5 weeks old

It's hard to believe that our son turns 5 weeks old today - my how time has flown by! This has been a busy week for us so I'm sorry for the long delay in blog updates. We had a great time Wednesday night visiting baby Shelby and her parents at the RMH. Ethan slept most of the time we were there and Shelby just wanted to play the whole time. We managed to wake Ethan up for at least a few minutes to get some cute pictures of the two of them together, which I'll try to post soon.

Speaking of Shelby, her surgery went well and recovery's going alright. They have a minor setback with her left diaphragm being partially paralyzed, either from the surgery or from the central IV line they put in her neck. Worst case scenario, another surgery will have to take place to work on the diaphragm and best case scenario, the problem will fix itself in time. So please keep her and her parents in your prayers. For more information on her, please visit their family's blog: www.caringbridge.org/visit/shelbyglover.

As for Ethan, we went for our first follow up cardiologist appointment on Thursday. Ethan's cardiologist - Dr. Robinson - also has a clinic at WakeMed Hospital which is only about 20 minutes away instead of UNC being an hour away. Ethan got all his vitals taken (blood pressure, pulse ox, weight and temp) and everything is looking great. He also had an echocardiogram (ultrasound of his heart like we did 2x while I was pregnant with him). Dr. Robinson was very pleased to see that everything is working great. He told us we can cut back on some of his meds - give Lasix only once a day instead of twice and stop the Prevacid for reflux (only use it again if he seems to need it). By next month's appointment, we will probably be able to stop the Lasix completely, and also probably stop one of the 2 heart meds! We can also stop keeping the pulse ox on him all night long, and just do one spot check each day (usually when he's asleep).

Thursday night we went over to see Ethan's cousin's - Rebecca and Marissa - that live in the first part of our neighborhood. Rebecca turned 5 that day so we had a private little party for her. The big party with all her friends and the rest of her extended family is today (Saturday) but we didn't want to expose Ethan to all the possible germs of other kids so we're staying home.

Friday, the home nurse came to do vitals. Ethan now weighs 9lb. 4oz. and is looking great. His pulse ox sats are looking good - staying in the mid 70s where they should be for an HLHS baby. We will have the home nurse come twice next week as well, then probably cut back to once a week. Ethan's also doing great with eating - he's taking a whole ounce more per feeding (and sometimes that's not even enough!) than he did when he came home last Saturday (hard to believe we've been home a whole week already!).

Also on Friday, my parents moved out of our house and into their new house in Wake Forest (about 15 minutes away). So, needless to say, things were quite busy this week around here. For those who don't live locally and may be reading this, we had a big thunderstorm last night (Ethan's first!) with lots of rain and even some tornado warnings nearby but we're all safe. We got lots of rain, which we desperately needed because of the drought we've been in this summer. Now it's bright and sunny and slightly cooler today. Glad to finally be getting into some cooler, fall temps!

The only prayer requests at this time for Ethan are just that he continues to have good oxygen sats and that he continues to gain weight.

One month old!

Well today, 9/11/07, Ethan is officially one month old! He has had lots of "firsts" today. To start, Ethan's home nurse, Linda, came to visit. She will come back weekly for weight and pulse ox checks and we can call on her any time we have any questions in between. If Ethan had come home with the NG tube, she would also be available to assist with changing the tube and addressing any problems/questions we had about the feeding tube, but fortunately we don't have to deal with that!

Also, Ethan had his first bath today in his new little bathtub we received from one of the baby showers. Mom and I thought this would be a pleasant experience for him but he screamed and cried the whole time - I guess because he was naked and cold (two things he really doesn't like). Until his umbilical cord falls off, he can't be sitting in water so it was more of just a sponge bath (which he's had before and didn't fuss nearly as much).

Tomorrow, we'll be heading back over to UNC - but only for a visit with our friends Crystal and Ben and their HLHS baby girl, Shelby Glover. If you've been reading our blog regularly, you will remember that we met Shelby and Crystal a few weeks ago when Shelby came for her pre-surgery heart cath and they stayed at the RMH the night before the procedure. Crystal just got news today that Shelby's getting ready to have her 2nd heart surgery on Thursday and they hvae to be at UNC tomorrow for a pre-op appointment. We're going to visit them tomorrow night to support Crystal and Ben and to let Ethan and Shelby meet for the first time! Please be in prayer for their family. At 5 months old, Shelby is a very sweet, healthy looking little girl. We can only imagine how hard it is for them right now to see their daughter undergo the Glenn surgery and to wait for her to get through the surgery and go to recovery so they can see her again. Going through the first surgery (the Norwood) was hard enough on both our families, but the babies were so young that we didn't really have much of a relationship yet. Shelby is a real little person now, with a personality and character all her own. Before we know it, we'll be following in their footsteps as long as Ethan continues to do well.