We're Celebrating!

No, I'm not talking about the Badgers' win yesterday. It's much bigger than that! We're celebrating our "new" little baby, with a perfectly formed heart, who is now eating without the ng tube!!!  I have to admit, I was skeptical that she would take off so quickly. The cardiologist had predicted this, but I'm still just in awe that it just "clicked" and she's eating like a pro. We had been working on making Erin's eating sessions positive again to regain the association of pleasure with eating. It took just a few days and she was no longer crying at the sight of her bottle. I would sing to her, cuddle her and rock her. The kids would get her to laugh by making goofy faces and sounds. And we all prayed.  God intervened in the strangest way, proving He does in fact have a sense of humor :) Here's what happened: Friday night Bridget was sitting on Erin's ng tube, but didn't know it. Eileen came along and picked up Erin.....and out came the ng tube! Ouch! Because the reinserting of the ng tube is traumatic, we took a leap of faith and decided to leave it out overnight. At 10 pm, she took only 1 1/2 oz.  At 2 am, she woke up on her own (for the first time ever!) and took 2 1/2 oz. At 6 am and 10 am, she took 3 oz each. All day yesterday, she took her bottle, better and better, each time. By last night, she was eating like a pro, guzzling it down like she'd been doing it her whole life. At first, Bridget and Eileen were in a bit of trouble for not being more careful around Erin. However, by last night we were joyfully thanking them. :) Yippee!!!

"When is Our Tooth Fairy Going to Retire?"

Yes, these were the words I recently heard from Teresa. Aidan lost his first two teeth about a month ago and has been waiting patiently ever since for the Tooth Fairy to arrive.  Thankfully, Aidan Andrew has a little bit of his uncle Andy in him, whom he is named after. He's a cool cat and is rarely demanding. With this personality, and being number five of seven, he sometimes just does a lot of waiting, without complaining. It doesn't help the matter that he lost the first tooth and swallowed the second.  And of course life has been extremely busy for his Tooth Fairies, and for our family in general, with Erin's heart surgery. But Teresa has a point. This Tooth Fairy needs to either get the job done, or pass the job onto somebody else. I think Aidan will be writing a note to this incompetent Tooth Fairy today and his patient waiting will be rewarded!

Here's Aidan with his new teeth already coming in...



And speaking of Erin's heart surgery, she continues to heal very well. Her scar is already almost healed, and she's sleeping less and has more energy in general. She's just a happier kid. One thing she has started doing more and more is laughing. It has taken us by surprise; she'll just have a good belly laugh, out of the blue, for no apparent reason. I think she's just letting us know that she feels so much better! We are also making slow but steady progress in the eating department. She no longer cries at the sight of her bottle, but this retraining could take some time. The cardiologist explained to us that before Erin's heart repair, Erin's feeding sessions were the equivalent of walking a brisk five mile hike. As you can imagine, asking her to do that several times a day has built up a very negative association with eating. It was just too much work. Having the ng tube helped a lot, but now we have to work on making eating a positive experience again. So, we sing to her and make her very comfortable while she's eating, with lots of praise.  It is working. Although she's still only taking up to 1 1/2 oz per feeding, more importantly, she's enjoying it for the most part now. We stop at the first sign of distress. I'm hoping that in another couple of weeks, and once she's off her heart meds, we'll see even more improvements. We'd still appreciate any prayers for this intention!

Here's Grandma McKillen, holding Erin before she went home. Both grandmothers were an incredible help while we were in the hospital. Thank you both!!

More Homecoming Photos

Erin's Home!

Moira, Eileen and Mike arrived to pick us up at the hospital on Monday afternoon. What a happy day!

Eileen and Moira waiting for Erin to wake up...






When we arrived home we were greeted by this sweet welcome banner (ahem....WHO is their spelling teacher, anyway?!)

A picture is worth a thousand words. Aidan, Teresa and Molly Grace are thrilled that Erin is home...



Bridget finally gets her turn to hold Erin...



Hail, hail, the gang's all here... Thank you for all your prayers and kindness!  (Molly Grace is not wearing lipstick....her lip was burned on a hot pan).

She's Coming Home (Finally!!!) {Moira}

My dad came home last night only to be called back to pick up my mom and Erin, early this afternoon. We (a couple kids and my dad) are leaving for Milwaukee to pick up Erin and my mom any minute now. This morning Erin had some final tests; all went well. WE ARE SO EXCITED TO SEE THEM!!!

Again, BIG thanks to everyone for all the prayers and support!!!

Erin Update 7

Erin's doing very well and improving so much each day! She has her smile back now and is playing with toys, but she is still a little tired. We're still struggling with the eating issue so she'll be coming home with the ng tube. Hopefully, as her strength comes back, so will her ability to eat! She is now down to just one IV line which is not being used. She's ready to come home, which should be tomorrow. She'll have one last sedated echo, EKG and chest x-ray, and if all goes well, as we're expecting it to, we'll be heading home!

Puckering up to give you all a kiss!

Relaxing in the crib.



Erin even had visitors!  Our long-time friends, the Wiebersches, who live in the Milwaukee area stopped in.  It was SO nice to see them.

Mary Rose and Samantha

Our Godchildren, Joey and Michael, and big brother Josh

Erin Update 6

I thought I'd give a little update on Erin now that I've had a little sleep myself :) She had a very good and restful night. There has been no needed morphine in the last 36 hours or so and she's healing fast. From a cardiac standpoint, she continues to do awesome and has had no setbacks at all. She had a small amount of fluid in her lungs yesterday morning but a little diuretic fixed that. She's much more alert and smiled for the first time since surgery.

We were so thrilled that she did so well with feedings on the first post-op day! Unfortunately, we had a setback yesterday, and she did not take any feedings all day. We're just not sure why. It could be nausea, or it could be that she just wasn't hungry with all the IV fluids. She has proven she CAN eat (with three 3-oz bottles yesterday); now we just have to be patient and help her relearn. I continue to try to nurse her as well. At 10 pm, after not having had anything except IV all day, we put the ng tube back in so we could give her some nourishment through the night. She'll be waking up soon, then we'll start working on the feedings again all day today. Erin has a strong will when it comes to (not) eating, but lucky for her, I think her mom's will is even stronger :) I'm determined to get her eating again now that her heart is fixed. I think she'll be discharged quickly once we have some successful feedings!

I've had a quick minute to read some of your comments. Thank you so much!! All of your prayers have been so wonderful! The doctors and nurses often comment on Erin's amazing recovery and I know it's all the prayers that have made the difference!

Erin Pictures {Moira}

Here are some pictures of Erin a couple days before they left for Milwaukee. We miss her so much! Also, my mom and dad. ;)

How big is Erin???........SO BIG!

We hope she will be able to come home over the weekend. We still don't have anything official.

Erin Update 5

Erin is now out of the PICU (Pediatric Intensive Care Unit). I got to hold her for the first time since her surgery, which was a thrill for me. Amazingly, before Erin left the PICU she drank 6oz. in two feedings! For those of you that know Erin well, this is quite a big deal for her, (and us!). Erin is in a great deal of discomfort now, as she continues healing from her surgery. She's a tough little girl and she's hanging in there. We are so proud of her.

THANK YOU ALL SO MUCH! The prayers of so many of you have certainly meant a great deal to our family.

Erin Update 4

Erin continues to amaze us! She came out of surgery yesterday afternoon, after 4-5 hours, breathing on her own, which is unusual. She had a fairly restful night. She is starting to feel some pain which the nurses quickly relieve with morphine. I arrived here at the hospital early this morning, and shortly after, the doctor removed her drainage tube and wires that were in the chest and heart. They will most likely remove her central line later today (which is in her neck), leaving three IVs rather than four. Things are moving quickly and they are already talking about moving her out of ICU today! She recognizes my voice and becomes a little agitated when she does. Although she has still not opened her eyes while we've been here, she is starting to move around a bit and show us all that she's not pleased with all of the wires and probes. But all in all, things could not be going better. Thanks be to God. Thank you for all of your kind comments and prayers. We'll try to check in later today. God bless.

Before and After

Erin's doing fabulous. The doctors and nurses say she's doing better than expected. Her breathing rate has dropped from 60-70 breaths per minute to 15-24! Her heart is working much more efficiently already.

Before surgery...




After...

Erin's Heart is Fxed!

We just spoke with Erin's surgeon. He said all went great. She came off the heart/lung bypass machine quickly. He upgraded Erin's VSD (hole) size from moderate to large. He commented that she is going to "really like her new heart". We're off to go down the hall to try to catch a glimpse of her as she goes from OR to PICU....More later.

Erin Update 3

We just spoke to Holly, our surgeon's nurse. All continues to go well with Erin! She went on the heart and lung bi-pass a little after 1:00. So she is close to half way through the repair of her heart, which includes a patch for the VSD and stitching up two small openings, a PDA and a PFO. They expect to start heating her up (they drop her body temp during surgery) around 3:00 or 3:30 and switch her back to her newly repaired heart at that time. They are expecting about 2 1/2 hours on bi-pass. Erin's repair is being done through the right atrium, then through the tricuspid valve, which is only the size of her pinkie finger. Just amazing! For those of you who have had a child go through this, you know what I mean when I say that pediatric heart surgery is truly a work of art. It's not over of course, but we're starting to feel just a little bit of relief that it's going so well. Once again, I have to say, we are very grateful for the prayers!

Erin Update 2

Dear Family and Friends,

We're finally able to give an update on Erin (the computers have been down at the hospital). Yesterday, late afternoon, Erin's blood work came back with some concerns. Her blood was not clotting properly, so the surgeon wanted additional tests before her 7:30 am start time. Since we could not get lab results that quickly, she was moved back to the 12:00 start time. All blood results came back normal this morning, so we had the green light to get started. Erin went to surgery, smiling and happy, at 11:45 am, and all is going very well. They quickly started the anesthesia and put in all her lines with no complications. They were just about to start the heart repair at about 12:45. The nurse will be updating us again sometime after 2:00 pm. The surgeon said he expected her to be out by dinner time. We'll be posting more when we know. Thanks again for the prayers!!

Erin Update 1 {Moira}

Erin's pre-op testing went well, for the most part. Late yesterday afternoon my parents called saying that the doctors had found Erin's blood wasn't clotting properly. Then after an additional test, they have rescheduled her surgery for noon today.

Again, thank you for all the prayers. I'll keep trying to update you.

They Left...

Erin and my parents left this morning for Children's Hospital Milwaukee, as most of you readers know. As they were leaving some of us just couldn't stop saying our goodbyes!!!  We were worried about her getting kiss-itis from one morning of so many kisses.

Today are her pre-surgery tests. Then tomorrow morning at 7:30 she will be put under and probably around 8:30 they will start the surgery part. We'll keep ya updated:)

Here's Aidan getting one last kiss in before they drove away.

Big Sisters are the Best!

I am so thankful for this girl! Moira's work behind the camera, taking the majority of the photos, makes this blog possible.

Wanna See the Cutest Little Cheesehead?

There he is, nephew Conal, smiling as usual.

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.