Erin Update

Dr. Strausburger called this morning, right after she presented Erin's case to the team of cardiologists and surgeons at Children's Hospital (which is done routinely the Thursday before each heart surgery). These doctors were unanimously in agreement over Erin's case, and surgery date, which just means that all is going according to plan. Erin will have her last sedated echocardiogram on the 18th and then surgery, starting at 7:30 am on the 19th.

We also discussed Erin's feeding troubles. Since mid-July Erin has decided that eating is a very low priority. While I attempt to nurse her or give her the bottle with each feeding, she inevitable ends up getting the large majority through the ng tube. Dr. Strausburger reassured me that this lack of eating is heart related. She went so far as to make an official prediction that Erin will take off and do wonderfully with her feedings after the surgery. She encouraged me to continue breastfeeding her. I sure hope she's right!

So now we continue to prepare. The kids are already saying how much they'll miss Erin while she's away. Teresa, Aidan and Molly Grace are drawing pictures for her to take with her to the hospital. Both grandmas are planning to arrive to help with the kids. Mike's co-workers will be preparing and delivering meals while we're gone. We are very thankful for the help, the Masses offered, and for all of your prayers!

Guess Who Weighs 12 Pounds???

Our little Erin does, today, on Sept.12, exactly one week before her surgery date!

It's been a long road getting to 12 pounds. Before her ng tube, we were feeding her around the clock. Because of the hole in her heart (a VSD), her heart inefficiently pumps already oxygenated blood back into her lungs.  It pumps up to eleven times more blood that a normal heart would. Therefore, her little heart has to work extra hard to manage the simple tasks of breathing and eating. She burns a lot more calories, with these chores alone, than a baby with a normal heart. Once the ng tube was in place, we could manage her feedings, both in number and in quantity, much easier.  It's been a good thing and I'm certain that she could not have had this weight gain without it.



Here's Erin before the ng tube. We tried everything in an attempt to get her to gain weight. We even tried this big "Jethro bottle", which my kids nicknamed after Jethro Bodine of the Beverly Hillbillies. It's almost as big as she is LOL!




Here's the little 12 pounder, with the ng tube, enjoying her excersauser that Grandma and Grandpa McKillen gave her.


Tomorrow Erin's cardiologist will present her case to a larger group of cardiologists and surgeons at Children's Hospital in Milwaukee. They will examine her latest echocardiograms. If there are any changes, or differences of opinion, our cardiologist will give us a call later tomorrow. Otherwise, we are set to head out for Erin's pre-op on the 18th.

Thank you once again for all of the prayers! We appreciate them so much!

Two Peas in a Pod

Best Buddies

Aidan is Promoted to Co-Pilot

When Erin was born, our family of nine could no longer travel together. The reason? We could not all fit into our Suburban, which only holds eight. Many people seemed more concerned about this dilemma than we did. In fact, during my pregnancy, the clerk, the hairdresser or the stranger would always ask, first, "When are you due?" That question was almost always followed by, "Is this your first?" (After learning that Erin was our seventh, I would then get that shocked, speechless, dropped-jaw expression. Don't worry, nobody has actually ever fainted, thankfully). Inevitably, the third question was, "What vehicle do you drive?" We finally took the lead from these concerned people, and decided we had better do something about this problem.

We weighed our options. We could get one of those big ol' vans (we found that they are very hard to come by, unless you go with the 15 passenger vans). We could sell a couple kids and buy a brand new mini-van (very tempting!). We could add a fourth row, which faces out, into the trunk area of our Suburban (but then where do you put the big double stroller?). Or, we could keep searching for a very rare, nine-passenger Suburban with the front bench seat. We even threatened the kids, on occasion, with this solution.

Around the last week of May, we (well, Moira) found our new vehicle. We went with a nine-passenger Suburban, which we found right here in Green Bay. Aidan, being the right sized child, was the lucky one to saddle-in up front. He loves riding next to Mike, especially. They discuss diesel motors, motorcycles, trains, airplanes, or anything else that has an engine. He can see so much better, and thinks he has the second-best seat in the car, next to the driver. We're enjoying his company up front as well.

Here's Aidan, our co-pilot, lovin' his new spot in the car

Here are three other little dumplins' that I see in my rear-view mirror

Babies, Babies and More Babies!

Many of our friends in our homeschool group, CHEF, had babies within a few months of each other. Here they are enjoying a day at the park....what a bundle of blessings (Erin is on the far right)!

Smile for Grandma

I think this may be the only summer photo showing all of the kids together. The fact that they are all looking at the camera is a bonus!

My Baby Sister with the Designer Genes

My Baby Sister With the Designer Genes - By Moira

Erin came into the world on a snowy Thursday evening, March 1st, 2007. I was thirteen, almost fourteen, and was woken up, at about two in the morning, to the phone being paged. Both cordless phones were in my room. My dad came in saying, "There they are"...I said, "Dad it’s two in the morning! What are you doing looking for the phones AT TWO IN THE MORNING!?!?!" Dad said, "Just go back to sleep, I'll wake you up if something happens." Obviously I was completely oblivious (it being the hour it was) that my mom's due date was in about a week, and that she had been having some contractions the past day. I almost went back to sleep. Just as I was about to doze back off, it hit me! "AHHHH!!!" I ran to the top of the stairs where I sat and listened. I heard my mom on the phone, "...yeah, my water broke about half a hour ago..." And I'm thinking, "Oh my goodness! The baby is going to be born in the living room!!!” I was still sitting at the top of the stairs when my mom came up very casually. I said "YOU’D BETTER HURRY!" She calmly said, "Oh, I'm going to take a shower and pack some clothes.” So she took her shower and I helped get the clothes together. They left at about three A.M. I didn't sleep the rest of the night.

Later that morning, my siblings finally woke up. I told them what was going on and they all went crazy! I sent out a couple emails asking for prayers. At about eight that morning my aunt and uncle came over with some food and excited spirits. Hours passed.

My aunt came back that afternoon and brought my siblings and me to our cousins’ house.... still no baby. Then at about 7:45 P.M., my dad called and asked to speak to Molly Grace, my 3-year-old sister. Molly Grace announced to the excited room of eleven Delaney kids, and my aunt and uncle, "It’s a girl...her name is Erin!" Everyone was so happy and a little surprised; Erin was the seventh kid and sixth girl in our family, with only one boy in the middle! Everyone had been thinking it was going to be a boy. I made a couple calls to my friends, and my grandparents in Michigan, telling them my mom was doing fine and Erin was healthy, weighing 7 pounds 3 ounces. I couldn’t wait to see her!

When my dad picked us up at the cousins the next morning (about one hour later than he said he would), he said that Erin had turned blue and was rushed to the NICU earlier that morning. Therefore, we probably wouldn’t be able to see her that day.

On the ride to our house the car was filled with questions: "Does she cry a lot?"..."Does she look like me?"..."What color eyes does she have?" I noticed my dad got a little teared-up, then he said, "Erin is a very patient baby”. Right when he said that my heart was crushed! Without being told, I knew Erin had Down syndrome. I had never thought that my new little sibling would have Down syndrome, or anything like it. I would have been happy at that moment to have a healthy, 7 pound 3 ounce sister with light brown hair. But I felt mad and upset...I didn’t want to see her or get to know her. I didn’t want her to be my sister. I cried and cried and cried.

After we had eaten (me eating very little) that morning and dropped my siblings off at my cousins' house, my dad and I went to the hospital. When we got to the hospital we went to my mom’s room and  then to the NICU. When we walked around the corner into the room, I saw there were four babies in there and I wondered which one was Erin. My parents walked straight to the crib with a big heat lamp over it. There was Erin. I saw that she was connected to all kinds of monitors and oxygen tubes. Then I took in her eyes, slanted slightly upwards at the sides, her little button nose, and her mouth with a BIG pout. Her bottom lip was sticking straight out in the biggest pout I had ever seen. The nurse said with a bit of friendly sarcasm, "I don’t think she likes it here”. If her pout could talk it would say, with a sassy little voice, "Pick me up!!! I don’t like being here with all these monitors, and especially with this oxygen tube, UGH!" We started talking to her and I noticed her pout gradually got smaller.

When I held Erin for the first time she just melted my heart. All the anger and unwillingness to accept her just melted away. I was trying so hard not to cry with all the nurses there. She was so cute and helpless. At that moment I was, and still am, determined to help her the rest of my life.

Fast forward to today. Erin is six months old (weighs 11 lbs 7 oz) and is as happy as ever!!! So are we!!! She is very alert and affectionate, and she babbles, “da da da da da”. She does all the things that typical babies do; she just may do them a little bit slower, at her own pace. She especially loves for us to sing to her! She likes any song, sung with any voice. And never once that I can remember, since she has learned how, has she not smiled back when one of us smiles at her, whether it is one of her smiles so big that her eyes are squinting, or just a little grin when she is about to doze off. Never once since I held her in the NICU did I wish that she did not have Down syndrome.

On Sept. 19th, Erin is going to be having open-heart surgery to close up her VSD. It just breaks my heart to think such a sweet little girl has to go through something like open-heart surgery.

I have felt guilty about how upset and selfish I was when I first heard that Erin had Down syndrome. I now realized that I just needed to learn a little more about Down syndrome. Now I know that when God gave my sister an extra chromosome…...he was just showin’ off! LOL! Erin is such a blessing. She is the light of my life. I know that God formed her, just as she is, and I know she’ll touch many lives as she grows up……just as she has mine.

Erin's New Surgery Date

Well, we finally have a new date...Sept. 19th at 7:30 am. Our first choice surgeon, Dr Tweddell, will be her surgeon. Erin's pre-op will be the day before, on the 18th. We were told that, while possible to get bumped again, it would be very unlikely. (Erin's also still first in line as a back-up for the 5th. In the unlikely event that another surgery spot opens up, in the next couple days, we'll be packing our bags at the last minute).

On Wednesday Erin had her final cardiology appointment. She has gained nicely and may make it to 12 pounds by the surgery date. She is slowly creeping into further heart failure, including some pulmonary hypertension now, but will be fine until the 19th. Our biggest prayer now is that she stay healthy and avoid any sickness from now till surgery date. Our poor kids' hands will be all dried-out from all the hand washing that we'll demand of them. But of course it's all worth it for little Erin.

Thanks once again for all the prayers!

Another update on Erin's surgery date...

Well, it seems we are still not settled on a date for surgery. After many phone calls today, we currently do not have a surgery date. If we go with Tweddell, the top surgeon, we will be bumped back to Sept. 19. With that comes the possibility of getting bumped again, as long as Erin's heart is stable. When a baby is born with a more serious heart condition, he or she is often brought to surgery right away, and usually with Tweddell. That's the price you pay for going with the best surgeon. Otherwise, if we choose to go with one of the other two surgeons, we could go with other dates, the earliest being the 10th. We're going to give this some thought and prayer and make our decision tomorrow after Erin's cardiologist appointment. More later....

Change in Erin's surgery date

We received a call this morning from Children's hospital asking to move Erin's surgery date from Sept. 4th to the 5th. As they explained, there is a baby to be born on the 3rd who has a much more serious heart condition than Erin.  Dr. Tweddell will now be doing this baby's surgery on the the 4th, and Erin's was moved to the 5th. That means her pre-op will be moved to the 4th. This plan actually works out better than the old plan because now we do not need to drive to Milwaukee twice (the old pre-op date was the 31st). That's it for now. Thank you for the prayers!