Memorial Day

We spent this past weekend at our camper and it was so nice and relaxing. We grilled for dinner every night, Julianna went swimming, I got to see my cousins that live in NC, we had a cookout with Joe's family and we ended it all with the annual Memorial Day parade in my hometown. I've only missed 1 parade there my whole life and that was when we lived in SC.

Today's parade had to battle some not so pleasant weather, a pretty good storm blew in about half an hour before the parade started. We didn't let that ruin our fun though. We put down the seat in the trailblazer, put a blanket in the back and had our lunch there during all the rain.

Joe and Julianna enjoying ham & cheese sandwiches.

Julianna still eating while I checked the weather on my phone.

During the parade, the rain calmed to just a drizzle.

The kiddos hanging out in the dry car.

The weather didn't bother Will at all.

We tried to tell Will he's too young for candy, but he didn't believe us.

9 Pound Smiles

Will had his follow-up with Dr McC, who did his pyloric stenosis surgery, today. The appointment was pretty quick (well, we waited 40 minutes to see him and saw him for about 40 seconds). Will is healing nicely, but the best part was that he now weighs 9lbs! I was hoping to see 8.5lbs, so 9 made me really happy! That means he is so close to gaining the half a pound a week that Dr Awesome and Dr M want him to (he gained 1lb 2oz in 2.5 weeks).

This week, he started coo-ing. He loves to talk now, and we have very deep conversations (politics, environmental issues, stuff like that). We also got his first real smile yesterday (you know the kind your parents won't say must be gas). I tried so hard to get a good picture of him smiling, but with Julianna trying to jump in front of me to see him and me trying to get him to smile while taking a picture, this is the best I could get. But I think it's GREAT!

Will smiles!

Rain Rain

Julianna's first time playing in the rain. She had a blast!

Adventures in Glueing

I do art projects with Julianna every few days, and today I decided to introduce a new art supply...glue. Yes, I may be slightly nuts to use glue with a two year old, but I figured she's washable so let's go for it.

We went with a patriotic project since Memorial Day is coming up.

She likes the bucket for the art supplies almost as much as the supplies.

Thrilled mommy gave her her own "yiddle" bottle.

She did awesome with the glue!

All the glue stayed on the paper, except for a tiny bit that got in her hair, but it washed out easily.

Luck

I've had a lot of people tell me they can't believe how "unlucky" we've been having two kiddos with health issues. That it's so unfair that I worked so hard at my pregnancies, and did everything right, and still had both babies hospitalized when there are moms out there who don't care and don't work hard and they have perfectly healthy babies. That each of the circumstances surrounding Will & Julianna's birth "stink". I've decided to take a much different outlook.

Sure, when you look at things from a general perspective it really does suck. Our daughter was a 27 week preemie that spent 66 days in the NICU, has PVL, a few developmental delays, and a few other preemie related issues. Our son has Shone's Syndrome and spent 25 days in the PICU & NICU, had heart surgery, is on a boatload of meds, and the future of his heart is still unknown. But we had the best of the worst. For as crappy as our situations are there is so much more good to be looked at.

When Julianna was born, we were in Ohio and surrounded by family, rather than in SC where we lived at the time. I went to the hospital the morning of her birth despite my OB in SC telling over the phone that my symptoms were not a concern. Julianna managed to avoid many of the major preemie issues. She has overcome how bad her PVL is (her neurologist said she should be paralyzed on the left side). Her teacher said she is doing amazingly well. She is a happy 2 year old.

When Will was born, we were fortunate enough to find out about his CHD before his birth and come up with a plan for him after birth. Our plan was executed perfectly. Will was able to keep himself stable for the first 2 weeks with minimal interventions. His CHD has not required open heart surgery. His left ventricle has improved and is functioning normally. He has started hitting some of his newborn milestones (I swear he smiled at me today!).

There are days when all I wish for is to have 2 completely healthy children. I wish that neither of my children had a "label", that Julianna wasn't a preemie and that Will wasn't a heart baby. I wish I didn't have to lock our family in the house during cold/flu season. I wish I had been able to have babies that came home from the hospital when I did. I wish that neither of my kiddos had to endure the things they have already. But there are so many more days that I am incredibly proud of what both my children have overcome. They are strong. They have stories to tell. They have scars to remind them of how far they have come already. They may both still have obstacles to face, but I know they will triumph. I am so proud to be their mommy. I wouldn't trade either of them for anything in the world.

I think we were given Will & Julianna for a reason. They are gifts to us from God. God knew Joe and I would work our hardest to make sure they had every opportunity to thrive and grow. He knew we would love them more than anything else on earth. He also knew we could handle the challenges each would bring to us and our family (although I still doubt it some days) He chose us to be Will & Julianna's parents. He knew we were the right parents for them. Luck had nothing to do with it.

One Hand Away From A Crying Baby

It's hard to type a long post with one hand while holding a sleepy baby that cries if you move him even an inch from where he's the most comfy. So, here's some pics of the kiddos and I'll try to write another day.

My 6 week old baby boy has a receding hairline! Is it just me or does he slightly resemble a baby orangutan? In an adorable way of course.

Lovin' on his Wubbanub.

Julianna just being silly.

Helping mommy cook dinner, she was breaking the spaghetti noodles.

Looking so grown up!

Mother's Day Getaway

I had a weekend getaway for Mother's Day. I woke up on Sunday in a luxurious hotel room and had a fabulous day of pampering...yeah, sure I did. In reality I woke up on pull out hospital chair with my little man sleeping in a hospital crib a few feet away. Not exactly how I pictured my Mother's Day, but Will was once again healthy, so I'll take it.

Thursday, Will's reflux starting getting bad...and I am using the word bad loosely...by Friday morning he had gone through a multitude of blankets, sleepers, onesies, socks, bibs & burp cloths (not to mention the several times I had to change my clothes). He was "spitting up" (ha! what an innocent sounding term) within a few minutes of every bottle and then again about an hour after each bottle. By the middle of the night it had progressed to being projectile. I was HATING reflux!

To give me a little break, Joe took Julianna to his parents for the morning while he helped his dad. not more than a few minutes after he left Will threw up again. It was so bad he needed a full blown bath and hair washing (oh yeah, totally got it in his hair). I gave him a bath, then started to get his next feeding ready. He gulped the whole bottle down as though he were starving (wouldn't you be if you had thrown up all the contents of your belly?). Not even 5 minutes after finishing the bottle the whole thing came back up all over him, me, the couch and the carpet. I cleaned us all up and called Dr M's office to see if there was anything I could do for his reflux because I COULD NOT take it anymore. Since he's so young still she wanted to see him.

So, at noon we saw Dr M. She was concerned that he hadn't gained any weight since the beginning of the week and that his spitting up had progressed so rapidly and so extremely. She wanted an ultrasound of his belly to rule out pyloric stenosis (thickening of the muscle between the stomach and small intestines). We went downstairs to radiology (I love that there is a lab, a pharmacy, and radiology all in the same building as the pediatrician's office). We had the ultrasound and went back up to Dr M's office. We then found out that the tech was unable to get a good enough look and we needed to go to AC's to get a better ultrasound. This was at 2pm and we had to be at AC's by 2:30.

We got the ultrasound at AC's at 3pm (because no doctor's office or hospital is ever on schedule) and Will had not eaten since 10:30, and even then he had thrown up the whole bottle, so he was pretty cranky. Just a few minutes later we were told that he indeed had pyloric stenosis. What was happening is that the muscle had thickened so much that nothing could pass from his stomach to his small intestines. When his stomach would contract to push the milk into the small intestines it couldn't go down, so it all came back up and with major force. P.S. is apparently pretty common in baby boys (between 1 & 2 months old) and sadly would go away on its own in a few weeks, but you obviously can't just not feed your baby until then. So Will was admitted and had surgery scheduled for the next morning.

Exactly 2 weeks from the day he was discharged from AC's, he was re-admitted for another surgery. Luckily this one was MUCH less severe. Saturday morning instead of walking in the March for Babies I watched all the walkers pass the hospital from the waiting room while Will was in surgery. It was a laproscopic surgery, so he has an incision in his belly button and 2 small ones on either side. He was such a trooper and only needed 1 dose of Tylenol for pain. Within a few hours he was eating and NOT throwing up! I was amazed at how quickly the surgery worked and how well he was recovering. The nurses were even surprised. I spent Saturday night with him at the hospital and let Joe go home to sleep (he spent Friday night there and was up ALL night with a crying hungry Will).

By Sunday morning he was doing so well, that later in the afternoon the surgeon said he could come home! So we got to come home and spend some of Mother's Day at home with just our family. It isn't the type of getaway I would ask for for Mother's Day, but it's one I won't forget.

We've now had a long talk with Mr Will and told him there are to be no more hospitalizations or surgeries. He's had more than enough in his first 6 weeks!

First Cardiology Follow-up

Will had his first follow-up appointment since coming home, with Dr Awesome on Tuesday. It went pretty well. The nurse did a weight and height check...he was 7lbs 14oz...HIS BIRTH WEIGHT! He has put on almost a whole pound since coming home! We were told if he didn't gain weight it would be sign that his heart was working too hard. She also did and EKG and blood pressures before taking us to another room to see Dr Awesome.

Dr Awesome said he was pleased with Will's exam. He can still hear a murmur (due to his coarc-I'll explain in a minute), but that all his pulses were good, He is oxygenating well, his color was wonderful and that the fact he is eating well is "huge". Everything he says is good is "huge". Then we went to another room for an echo.

The echo took forever. In the hospital an average echo lasted about 30-40 minutes, this time it was over an hour. But Will did wonderfully. He slept through almost the whole thing despite the fact that it was his lunchtime. Dr Patel was able to show us exactly what is causing his murmur on the echo. When they did Will's coarc repair they found that his aortic arch was narrowed much further back than they had originally thought. Because it was narrowed so close to the vessels that take the oxygenated blood to the brain they couldn't remove that section without clamping off the blood supply to his brain, so they left it narrow. This affects his blood pressures and how hard his heart has to work.

In terms of blood pressure think of it as a water in a garden hose. When the end of a hose is unobstructed, the water flows out easily with little pressure. But when you put your finger over the end and make the opening smaller, the water flows faster and has much more force. This is basically what is happening in Will's aorta.

Right now Will's aortic valve is opening remarkably well. Dr Awesome was very happy with it. His mitral valve though still smaller than normal is also opening completely. But the best news of the day was that his left ventricle is now functioning normally! Not almost normal or nearly normal...it is functioning as though it were NORMAL! Compared to his echo the day he was born, when it the outer wall was not functioning at all, that is absolutely amazing!

The three main things that Dr Awesome will be watching with Will are the remaining coarctation in his aorta, that his aortic valve stenosis doesn't return, and that his mitral valve continues to work despite it's small size. I was very relieved when we were told that Will did not have HLHS, but since I have started researching Shone's Syndrome and talking with the doctors, I am worried about the fact that it (unlike most CHD's) can continue to worsen as the child grows and new problems/complications from Shone's can arise.

Thank you again to everyone who prayed for Will and our family while he was in the hospital! And don't forget that we are walking in the 2010 March for Babies this weekend in honor of both our little miracles. Please consider sponsoring Team Kieffer. Just click here to make a donation. Thanks!!

No Time For Blogging

Finally a few minutes to post. Will's first week home went WONDERFUL!! The transition from 1 kiddo to 2 was really smooth. The only thing I struggle with, is finding time to pump without one or both kids screaming (or in Julianna's case, getting into something she shouldn't). We have gotten into a pretty good schedule and things are getting easier every day. Amazingly, Will sleeps really well at night, a huge difference from Julianna's first week at home!

Monday, Will saw Dr. M for his first well baby check-up. He weighed 7lbs 8oz and had grown a whole inch since birth! She was very pleased with how he is doing. Then on Wednesday, Will saw Dr. S (one of his heart surgeons) for a quick follow-up on his surgery. Basically, he just looked at Will's incision to make sure it was healing well. At that appointment he weighed in at 7lbs 9oz...HE'S GAINING WEIGHT! I am hoping that by his appointment with Dr. Awesome on Tuesday he will have surpassed his birth weight. A friend of mine posted on FB that she was putting away all her sons newborn clothes. I laughed because newborn things are still big on my 5 week old little man!

Since things were going so well we decided to spend the weekend at our camper. Both kiddos did really well and it was fabulous to have a relaxing weekend. We really needed the time to just relax and have nothing to do or anywhere to be. We grilled hot dogs and yummy BBQ chicken, sat outside in the beautiful weather Friday, and just had a good time as a normal little family.

I am hoping to get back to my normal frequent posting soon. I miss writing about all our ordinary things. Just to hold everyone over until my next post (because who knows when that will be) here's some pics of my adorable kids from this week.

He's getting a little bit of his chubby cheeks back!

Julianna has decided she wants to pick out her own clothes and hairbows, amazingly she does really well matching!