One Month Checkup & Lactation Consultant

Yesterday was a long day so forgive me for no post. The pediatrician appointment went pretty well. We saw a different doctor, who was a lot more thorough and I felt more comfortable with. Ethan seems to be doing well over all, and no immunizations were given! He'll get those at his 2 month checkup, along with the start of Synagis - a monthly shot during fall and winter, to prevent catching RSV (for more information, visit synagis.com). His pulse ox was good - 82% and he weighed in at a whopping 10lb. 3 1/4oz. - a whole 2 pounds heavier than his birth weight!
Also, 2 days ago I mentioned that Ethan was awake almost the entire day and I had hoped he'd sleep well that night and he did - 5.5 hours! But last night was a different story, he was asleep most of the day and then woke up every 2 hours. He's slept about half the day today, so we'll see how tonight goes! :-)

Today was another big day, first we went by my office for a visit with my co-workers and a meeting about the change in insurance that takes effect in October. Then we went to a different branch of Ethan's pediatrician's office to meet with a lactation consultant. To recap, with Ethan's heart problem he burns calories faster so all his feeds have had to be fortified with extra calories - by adding a couple teaspoons of formula to any bottle we give him. As a result, I haven't been allowed to breastfeed, so I've had to exclusively pump. Well as any mom reading this knows, pumping's not the most fun thing in the world, and it takes extra time to pump, then take the time to bottle feed. It's hard to get anything else done during the day! Therefore, I'm getting very frustrated and decided it was time to seek help! My main frustration has been that each pumping session only produces half the amount of milk that Ethan takes at each feeding so I feel like I'm not able to provide, therefore stressing myself out and that's not helping my supply at all!

As a first time mom, this feeding issue has been extremely difficult for me emotionally and physically. I want the special bonding time of nursing that most women get, and the cardiologist has said I can try breastfeeding once a day max, but that he needs the extra calories the rest of the time. Also, with bottle feeding, we know exactly how many ounces he's eating. Plus, because he failed the swallow study a month ago, all his feeds have to be thickened so he doesn't aspirate (let the food go down his windpipe instead of down his throat into his stomach). So at our visit today, Michelle tried to teach Ethan to latch on, but he's spoiled - a bottle is much faster to feed from than me! She has given me tips to try to get Ethan to latch on, which I will try daily, and she's also going to have me come back weekly for a couple of weeks to work on it in the office.

Besides trying to nurse once a day, she's suggested I try the herbal supplement, Fenugreek, to try to help increase my supply. I'm very pleased and encouraged by Michelle's patience and understanding and positive attitude about being able to get him to nurse when he's this old, and also about being able to still increase my milk supply. In adition to the Fenugreek, she told me to relax, get lots of rest and sleep, drink lots of fluids and eat well, continue pumping/nursing and also stop cooking, cleaning, doing dishes and laundry! I'm not going to argue with that!

So anyone wanting to help us out, we've appreciated your financial gifts we've received towards Ethan's medical fund, but what we could really use at this time is some help with meals! Tonight we're having our very first meal brought to us - thanks to Dan's mom!

Week 2 Alone

Today was a good day for the start of my 2nd week home alone with Ethan. Nothing eventful happened and we just enjoyed lots of mommy-son time. Ethan was awake nearly the entire day, so hopefully he will sleep really well tonight! Tomorrow we go back to the pediatrician for Ethan's one month checkup (I think he's getting his immunizations so he won't be very happy and neither will I). Ethan's CICC nurse clinician, Kay, at UNC called his pediatrician last week to confirm that we can go for weekly weight checks without having to pay a copay each time, which is a big relief. I called his pediatrician to confirm and they said that if I go early in the morning, that I can get right in before any of the appointments show up (they open at 8 but don't start seeing patients until 8:30), so that's less exposure to germs!

Be praying for our pediatrician appointment - 9:40am on Tuesday morning. I dread having to see him get his shots but I know he really needs them. We can't risk getting any major sickness prior to his next surgery. He will also have to start going monthly (every 28 days to be exact) to get his RSV shot - which he'll get Oct.-April. This is not a true vaccine in that instead of getting injected with a tiny bit of the virus, instead, he gets injected with the antibodies that his body would make to help fight it. What a great idea for an immune booster!

Tonight Ethan's cousins, Rebecca (5yr. old) and Marissa (2yr. old) Gunter (Dan's sister's kids), came to visit. They live exactly 1 mile down the road from us, so it's nice to have them close by! They are so excited to finally have a cousin close by, and I think it'll be great for them to grow up with family so close. Amanda and her husband, Reggie, have been so gracious to hand down all their girls' old baby gear (swing, carseat & stroller, bassinet, toys, high chair, etc.). The carseat and bassinet have been used the most, but we're starting to introduce him to the swing and he seems to like it, as long as it's not right after he's had a bottle! One of these days we may even take him for a walk in the stroller, if it will ever cool down!

Thanks for continuing to read our blog, and sorry for taking so long to post an update. Just remember that "no news is good news". We've just been so busy adjusting to life with a baby that we haven't had much time to do anything else!

We're Home!

Thanks everyone for all your prayers and words of encouragement over the past 4 weeks that we've been at UNC (and even during labor and delivery). Dr. Stewart told us to plan on staying in the hospital 4-6 weeks after delivery and we're so thankful that it was only 4 weeks! God has been so gracious by answering prayer after prayer that has been lifted up during this time - including my prayers last night that he'd continue to do well off the oxygen and that we'd get to go home today or tomorrow.

Ethan has been doing very well ever since his heart cath yesterday morning. As we mentioned yesterday, he didn't need any oxygen during the procedure, but the nurses did put him on .1ml for most of the day while he was sleeping and trying to come off the anesthesia. By 6pm last night, they took Ethan off the oxygen to see how he would do and he made it all night long without needing any oxygen!

At 8:45 this morning, the attending doctor, Dr. Smitherman called us to let us know the good news that Ethan was ready to go home! So we packed up our belongings and cleaned out our room at the Ronald McDonald house and headed over to the hospital. We got to UNC by 10:45 am, gathered up his and our belongings, waited for his nurse to get out of a meeting, received our discharge papers and final instructions and were out of there by 12:15 pm!

For those of you who don't know, my (Julie) parents have been living at our house since July 4th, while their new house is being built. This has been a blessing so that our house hasn't had to sit empty for the past month and we didn't have to pay anyone to watch our dog. We surprised Mom and Dad this afternoon by not giving them a courtesy call, we just walked in the door with Ethan! Mom and Dad will close on their new house on Monday, Sept. 10th but will wait until next Friday, Sept. 14th until they move out so we'll be able to have a little extra help as we get used to having a baby at home with us.

Now the real fun begins as we get settled into our own routine here at home where we all belong! We will have monthly pediatric cardiology appointments with Dr. Robinson at WakeMed Hospital, which is much closer to home than UNC (15 min. instead of an hour drive). Ethan's first checkup will be next Thursday morning. We will also be scheduling Ethan's first pediatrician appointment for sometime that same week, preferably before the cardiology appointment. We will continue to monitor Ethan's oxygen sats during the night when he's asleep, and also a few times each day when he's awake and calm, just to make sure things are still looking good. We have a huge oxygen tank and several portable tanks, just in case we need it.

We will continue to give regular updates on Ethan, but it may not be daily now that we're at home. Just know that "no news is good news". Please continue to keep us in your thoughts and prayers. We've made if over the first hurdle (Norwood surgery) but we've still got 2 more surgeries to go (one in about 3-7 months from now, and another about 2-4 years from now).

Week 37 checkup

We went back to UNC again today for our 37 week checkup. All seems to be fine right now. The nurse who took my blood pressure gave me a little scare, suggesting that since my blood pressure was high, I might be at risk for pre-eclampsia. But when my doctor came in, she said that my blood pressure was the same it's been for the past month so she's not a bit concerned about it. Ethan's still measuring the right size for a baby his gestational age and we're still on target to be admitted the night of Thursday, August 9th to begin induction.

After the checkup, we met with one of the lactation consultants and she explained a lot of the administrative sides about the hospital pump availability as well as their staff availability to help if we have any questions. They are definitely encouraging me to pump since breastfeeding is questionable at this time since Ethan will be hooked up to too many wires, tubes, etc. before/after surgery. This is comforting to hear they still value trying to feed him with my milk instead of using formula or just IV fluids.

Continue to pray for Ethan's strength, health and growth in the next 2 1/2 weeks before he's due. Also please pray for the doctors and nurses who will be working with him once he's born. Our OB just told us today that she's going to be on vacation the week we're induced, and the lactation consultant we saw today is also going to be on vacation starting that weekend. But at least our heart surgeon will be back from vacation and hopefully refreshed and ready to perform his best when it's time for Ethan's surgery.

Week 36 check up

Well we went to UNC again yesterday (Tuesday). We allowed an hour for our commute, as usual, but traffic was worse than normal and it took us an hour and a half to get there. As a result, we missed our 8:00am ultrasound appointment because we arrived at 8:30am. Therefore, we had to wait around for over an hour to get squeezed in to the next available time slot. This also caused us to miss our 8:45am check up, which we didn't get to until close to 10am.


The ultrasound went well! The reason for this ultrasound was to measure the amount of amniotic fluid because it was on the low side of the normal range last week. Fortunately, things looked good, we're back to the mid-level of the normal range (normal runs between 6-20 and we were a 12). Because the results looked normal, they decided we don't need to have any more ultrasounds. We did get some great 4D pictures of Ethan yesterday during the ultrasound. We were surprised to get any at all because last week they told us that it was too late in the pregnancy to see anything because it's getting so crowded in there! But the ultrasound technician said it certainly wasn't too late to get pictures, it all depends on which way the baby's positioned. Below are some of the pictures from Ethan's most current "photo shoot"! It's amazing how much detail a 4D picture shows. We can really start to see what he's going to look like!

Week 35 - UNC check-up

Today we visited UNC for an ultrasound, our 35 week check-up, and another tour of Labor & Delivery (L&D), Neonatal Intensive Care Unit (NICU) and Pediatric Intensive Care Unit (PICU) with our care coordinator. Dan and I took the tour back in March when Ethan was first diagnosed with his heart defect and we learned we'd have to deliver at UNC, but my mom was with us so it was good for her to get to know the area with us.

Everything looked normal on the ultrasound - Ethan's not showing any other defects or problems besides his heart at this time. He's already 6lb. 1oz. and in the 53rd percentile, and we still have a month to go! From here on out, we'll be traveling to UNC once a week for check-ups. The amniotic fluid is borderline on the low side so at next week's check-up, I'll also have another ultrasound to monitor the fluid level again. If it looks alright, then I won't have any more ultrasounds; but if it's looking low, they will probably monitor me weekly with an ultrasound while I'm there for my weekly check-up.

After the ultrasound, we went for our check-up, where I learned I tested positive at the last visit for Group B Strep (which they say is common in about 30% of all pregnancies), so I'll be given an antibiotic in my IV when I go into labor. And speaking of labor, Dr. Boggess has me scheduled to arrive at UNC on Thursday night, August 9th and I'll stay overnight and get induced on Friday, August 10th (if I haven't already gone into labor before then!). So one month from today, we may quite possibly be meeting our sweet little boy as he enters the world!

Once we finished with the weekly check-up, we met up with our care coordinator, Lisa. She guided us through our tour of L&D, NICU and PICU. We learned that in the NICU and PICU, parents and grandparents have 24 hr. access to Ethan, but only 2 people are allowed in his room at one time. We also learned that we are allowed to sit in on the weekly team conferences that take place every Monday afternoon. The team consists of all medical team people that will be dealing with Ethan's case, including our care coordinator. The team discusses all the current patients, so for confidentiality sake, we will only be sitting in on the part of the meeting relating directly to Ethan's status. Doctors also make daily rounds in the NICU and PICU so we can get updates at that time as well. Also, the NICU has an 800 number to call and speak to Ethan's nurse on duty at any time of day or night to get an update if we're not able to be with him! I feel like we're definitely in the right place for our son's treatment.

Thanks for the continued prayers for our son and for us. We can definitely feel the love and encouragement and support of all our friends and family!

Visit to UNC

Today mom and I went for my regular visit with the OB clinic at UNC. We met with Dr. Kim Boggess and really liked her! She was very helpful and was able to answer a lot of general OB questions I'd been collecting since starting birthing classes earlier this month. Unfortunately, I failed my 1 hr. glucose test at last month's checkup so I've got to have a follow up 3 hr. glucose test on Friday. I will be able to have that done at Rex since it's a little closer than UNC, but I'm still not looking forward to it. It involves drinking a sugary orange carbonated beverage once an hour for three hours and at the end of each hour, having my blood drawn. This test is used to confirm whether or not I have gestational diabetes.

On a brighter note, it's such a relief to be treated like a "normal" pregnant person and to just be able to focus on the "normal" questions a first-time mom has with trying to understand the process of labor and delivery, without the equation of Ethan's heart problem. Dr. Boggess assured me that since nothing can be done to treat Ethan until after he's born, that I'd progress with labor and delivery like any other mother out there, no special treatment because of his heart problem. This means I can have pain meds :-) and a regular delivery without need for a C-Section (unless some other complication arises...unrelated to our son's heart defect).

After meeting with my OB, my care coordinator took us over to meet one of the cardio-thoracic (CT) heart surgeons - Dr. Robert Stewart. He and the other CT surgeon, Dr. Michael Mill will be tag-teaming Ethan's heart surgery. Both doctors are very skilled at what they do and they operate on at least a dozen HLHS babies a year! Our pediatric cardiologist, Dr. Cotton has done a great job at our previous 2 appointments at explaining the 3 heart surgeries, and today Dr. Stewart re-explained the procedures once again and answered a lot of our questions about what to expect post-op and also for years to come after all 3 surgeries are completed. Mom and I left UNC feeling a lot more confident about our hospital choice and about the whole situation overall. We are definitely thankful to be blessed to live in a day and age with so much technology and medical expertise to be able to help our sweet son live. It's hard to believe that treatment has only been around since 1980 for this congenital heart defect and we are very thankful that God has allowed our son to be in such good medical hands.

Now that we're well into our third trimester, it's time to start having more frequent checkups. We return on July 10th, where we'll talk about possibly induction for labor because Ethan's surgery needs to be timed to be 3-5 days after he's born and they want to make sure that he's born in time to have the surgery during a work week and not have to extend it a few days by having to wait through the weekend. That week, we'll also have one last ultrasound to check Ethan's growth once more before he arrives! Not long now until we get to meet Ethan at last!

3rd trimester begins

We're about 8 1/2 weeks and counting until our son arrives! That means I'm now at 31 1/2 weeks gestation and we went to see my UNC OB, Dr. Strauss at his Rex Hospital office today. We had an ultrasound and found out that Ethan is not currently in a breech position (head up) like he was last month, so that's good news! Our son still has the diagnosis of Hypoplastic Left Heart Syndrome so we will continue as planned with the series of three surgeries after he's born to help correct the problem.

Ethan is currently in the 45th percentile for babies his age and he weighs 3lb. 14oz. This is also good news because babies with his heart defect are usually a lot smaller than average. During today's ultrasound, we got to see some 3D pictures of Ethan but he was being shy by hiding his face with his knee and arm so we never got a clear shot of his whole face. Hopefully he'll be a bit more cooperative next month when we have our final ultrasound!

Our sweet little boy is safe as long as he's still in the womb so the doctors at UNC are treating me like any other "normal" pregnancy and delivery. Now that we're in our third trimester, the doctors visits will be more frequent but that's normal so the doctors will only check my blood pressure and weight and not focus on Ethan's heart. We are scheduled to go to WakeMed on Friday morning for an echocardiogram of the baby's heart with Dr. Cotton, our pediatric cardiologist. Dr. Cotton will be able to examine Ethan's heart better since he's older now and his whole body has grown since his diagnosis nearly 13 weeks ago.

Thanks for your prayers for us and our sweet son. We will keep you updated about Ethan's heart after Friday's appointment.