Lucy Loves Her Princesses

So, Lucy has only been exposed to princess movies once and it was just this Thanksgiving where she watched a portion of Cinderella. That said, she can tell you all of the princesses names and she LOVES them all. ;)

A month with Elijah

I can't believe that our little guys is already a month old though, on the other hand, it seems like he has been a part of our family for much longer than that. He is such a sweet and easy baby! Today we had his one month check up. The little man is putting on weight fast which is a HUGE relief given the challenges we could have with MCAD if he were not gaining weight. He has been weighed at the doctor's office four times in the past month and he has progressed from 10% to 13% to 20% to 41% at this last check up. He gained 1.75 pounds in the last two weeks alone! It is happening so fast that there are a number of his newborn clothes that he has only worn a few times and has already out grown them! It is pretty cute to see his little face filling in and that most splendid double baby chin. He looks so much more like a little baby than a newborn now. He's transitioned from wearing PJs all day every day to wearing pants and shirts. Oh, the little boy is growing up to fast. I just smother him with kisses to try to make up for all of the growing up that he is doing. I love love love holding him, rocking him, and kissing his cheeks. I think that I could do that all day or until my arms fell off.

He is a great little sleeper too...for the most part. He sleeps at night except for the feedings every 3 hours. I had high hopes of feeding him only every 4 hours after the Biochemical specialist told us that would be ok, but he is intent on eating every 3 hours still and we do have to do "feed on demand" still. That said, I really can't complain given that he falls asleep right after the feedings for the most part. When he doesn't, Pat takes the soothing which is awesome for me!

Ok, this is just a bit of rambling. Here are a few pictures of the little man at 1 month.

Daddy with his little people!
Sporting his cute outfit from Auntie Kaitlyn
Hanging out with Daddy
This sleeping face is so so sweet!
Um...and so is this one!
I caught the tail end of a smile!
He looks so old and seriously pudgy!
I can't resist the sleeping face pictures apparently. He just looks so peaceful

Little Videos

So, this isn't super exciting or anything, but here are two quick videos of the little man. He doesn't do any super baby tricks. This is mostly for Lindsey who hasn't seen the little man in real life yet.

Uncle Craigee?

Just a quick Lucia story. I have been reading A LOT to the little lady because it is one of the few things that I can do with her while nursing the little guy. Most of the time she opts to read her bible. The other day we were reading the story of John the Baptist and she said, "hey, uncle craigee is in my bible. Look mama!". Here is the picture that she was looking at when she made the proclamation.

Pretty awesome!


One more Lubee story... The other night she came walking into her room with her eyes closed saying "Dear God, please move the clouds so that I can see the moon and the stars. Amen." She opened her eyes and said, "I prayed to God, mama!"

LOVE that kid!

Elijah at 3 Weeks

Elijah will be 3 weeks old tomorrow. In some ways, the time has flown by and in other ways it seems like a lifetime ago that we were at the hospital. We are enjoying his sweet little nature. He is such a chill and happy baby. He is sleeping in his crib now and has been for the last week. He sleeps from one feeding to the next without having to be walked or rocked. What a relief and blessing! He, in just the last few days, has really started to coo at us and do his little tiny baby smiles. I know the smiles aren't social smiles yet but they are still so cute.

I think that Lucia is adjusting fairly well. She seems to be testing the boundaries a bit but has been quite sweet with Elijah. Yesterday we were driving in the car after dark and she said "look brother, the moon!". She also asks to give him hugs and kisses before bed just like she does with us. On a funny note, she asked me yesterday "mommy, do babies eat boobs?". That was awesome. Nearly peep my pants laughing at that!

That's all for now. Off to play with my baby!

Family Pictures

It was a beautiful fall day in Seattle, so we thought that we would try to take a few free moments to get a few pictures of Lucia and Elijah. Pat, of course, did the photo work. Hopefully we will get some pictures soon of all four of us!

Maybe a bit crazy to let your 2 year old hold a newborn, but she was a natural...sort of...and did a great job. Elijah survived it. :)
Big sister love. She asked tonight to give him a hug and a kiss before bed! Such a sweetie!
My sweet little man. I could kiss his face off all day long!

Random Kiddie Cuteness

I could hold and snuggle these two kiddos all day every day and be so happy. I am the luckiest mama ever to have been blessed with such sweet babies. I love them to pieces. Though the best, I must say, is seeing all of my people together...Pat, Lucia, and Elijah snuggled up. That is the height of happiness.

Here are some pictures from our lovely moments...

Visit with Grandma Jana

My mom traveled up here to spend the first 10 days or so with us and the new little guy. It was so nice to have her here for so many reasons. She was a great comfort when we found out about MCAD and made it totally seamless for Lucia. She let us have our space to process and took Lucia so that she didn't need to see our initial "processing". She was very encouraging. On top of that component, she spent at least half of each night with Elijah and held him while he slept. It was so sweet to know that she was getting that time with him...and that Pat and I were getting more time asleep! :) She did tons of cooking, cleaning, and Lucia entertaining. I don't know what we would have done without her!

Here are some pictures from her visit.



Lucia and grandma at the museum being fire fighters.
TWO grandbabies now!!!

Our Story of MCAD

Elijah was doing great at home and we took him for his 3-5 day check up on Tuesday, Oct 25th. All looked great at the checkup. He had lost 5oz in the first few days but was back up to 6lb and 6oz at the checkup, so he had gained a tiny bit back in the first 2 days at home.

Later that night, I looked at my phone and saw that I had a call from the pediatrician. That is never a good sign as far as I am concerned. The only other time he had called me was when we needed to take Lucy in to the ER for her UTI. Pat checked his phone and he had 2 voicemails and a text from the doctor. That confirmed that there was definitely something wrong. Pat called him back and got the news that Eli had tested positive for MCAD which is a rare genetic disorder that shows up in the PKU infant testing that they run at the hospital.

We were completely shocked and heart broken. Our pediatrician had never seen a case of the disorder before which made the news even more challenging because all we knew after that call was that it was serious, could not be cured, and could lead to terrible things like coma, brain damage, or death if not managed properly. We did what you might expect and spent the whole night researching the disorder on line. What we read brought us to our knees. There was story after story of feeding tubes, brain damage, severe diet restrictions, ER trip after ER trip, and through it all most medical professionals did not know how to treat the disorder so there were plenty of cases where children's needs were not addressed in a timely manner leading to permanent damage. In fact, we read one medical document that stated that, if not diagnosed, 25% of children died before the age of 3 years old. All of this information was enough to crush us. We prayed and prayed and tried to wrap our minds around what life would look like. I kept praying that God would help us to treasure the time that he would give Eli and that we would joyfully soak in every day that we had with him. We thought that his time with us would be cut short. We knew that his life was in God's hands, but honestly we were afraid of what that meant. We felt like our little baby had been take from us already. We spent the next 24 hours crying more than not.

On Wednesday morning, we had to head down to Children's hospital for additional blood work. That experience deepened the shock. There were so many hurting people there and I felt like we were walking into a place where we would spend countless hours and days. We just kept praying for God's peace and comfort. I didn't even make it past the greeter desk without crying. We were both a mess.

While we were at Childrens, I had missed a call from a Biochemical Geneticist from the Center for Human Disease and Disorders at UW. We gave her a call back and her words provided such encouragement that we began to feel like we were getting our son back! She lead in by saying that Elijah would be completely fine and that MCAD was very manageable! She said that he could live a full and active life. She also said that the stories of coma and brain damage were in cases where children were undiagnosed and then did not receive any specialized care when they were sick. This could be completely avoided with Eli given that we understand his condition and his needs. I cannot tell you how much of a relief this was to us. We didn't feel even close to 100% great about the situation but we felt like God had provided so much grace. It was hard to accept the good fully though after reading so many negative stories.

The more complete relief came after meeting with Dr. Scott the Metabolic Disorder specialist on Tuesday, Nov. 2nd...a full week after Elijah's diagnosis. He gave us the following good news!

1. In the 8 years that the clinic has been open and treating MCAD patients there has not been a single episode of "metabolic decompression." This means that while patients regularly end up needing to go to the ER for an IV to help treat them during periods fasting (vomiting, etc), to date all of the visits have successfully treated the patients' needs quickly enough to avoid any permanent issues such as seizures, coma, brain damage, death.
   
2. Dr. Scott said that if Elijah is average, by the time he's five, he will have been treated in the ER twice. Again, very encouraging here. We'd read that even something as simple as a cold could be life threatening. We thought we were going to be in the hospital with Elijah constantly.
   
3. Once we identify that Elijah is having issues (most likely when he gets stomach flu) we have a couple of hours to get him treatment before it lasting damage is done. This gives us some peace of mind about the process of responding when there is an issue. Dr. Scott advised that we go to the Children's Hospital ER if we have time or Providence up in Everett if time is short. We were provided a letter to take with us when we need to go to the ER that explains Elijah's disorder and how to treat if.
   
4. At Elijah's current age and weight, Dr. Scott estimates that he could go without food intake for 6 to 8 hours before he would become severely hypoglycemic and get into trouble.
5. Currently, we can wait up to 4 hours at night and 3 hours during the day to feed Elijah and be perfectly ok. This is awesome because we were initially told it needed to be every 3 hours around the clock.
   
6. Elijah will need to be seen by Dr. Scott and Team again around 5 or 6 months, when we start transitioning him to solid foods. After than the appointments will be yearly. I feared month appointments so this is awesome news.
7. Elijah will start taking Carnitine daily. Carnitine is a natural substance that we all have in our bodies. The extra Carnitine will help him boost the efficiency of his metabolism. There are no side effects known.
8. Elijah has what Dr. Scott called "Classic MCAD." The mutations in his genes are the worst ones to have, but as it turns out, 80% of people with MCAD are in this category. The other lucky 20% have mutations of a less severe variety.
9. Beth, the Nutritionist, told us that most of the information about dietary restrictions for MCAD patients that's available online is out of date and that while Elijah will need to be on a low fat diet, the diet will not need to be nearly as strict as the literature would suggest. This means that the burden of specialized meal planning has been significantly lightened.

It is amazing to look back over the last two weeks and see the countless ways that God has protected our little boy. I, more than ever, believe fully in God's power to save, protect, and answer prayers. While this has been tough, I can see God's goodness through each stage. I know that sickness is hard to see as "good", but I think that there has to be different definitions of "good". It is not just comfort and ease. Here are some of the ways that I can see how God has worked to protect our family.

1. Many babies, before the diagnosis comes back, are rushed to the NICU before even being discharged from the hospital because of low glucose counts. The glucose levels can drop very quickly and to dangerous lows just between birth and when the mother's milk comes in. My milk came in really early.
2. I was GBS positive and was supposed to have a minimum of 4 hours of antibiotics before Elijah was born to reduce his chance of infection. I only had 2.5 hours of the antibiotics yet Elijah did not get sick. An infection would have been extremely dangerous for him because it would have set in well before the MCAD diagnosis came back.
3. Not all states even test for MCAD. Had he not been tested, he would have had, according to the document we read, a 75% chance of survival after his first metabolic crisis. In addition, the testing in Washington State only started in 2005.
4. Lucia is not MCAD positive!
5. Dr. Scott has, hands down, the most impressive medical bio I have ever read. Here is the first paragraph and it only gets more impressive as you read..."Dr. Scott is Director of the Biochemical Genetics Laboratory at Seattle Children's as well as Director of the Molecular Diagnostic Laboratory. Both laboratories were founded by Dr. Scott. He heads one of the largest biochemical genetics programs in the United States, and serves as the metabolic disease consultant at Seattle Children's as well as the University of Washington Medical Center. He is also a frequent genetic disease consultant to the NICU at the University Hospital." He sees all Washington State patients with MCAD and he is located in Seattle!
6. The great care that Elijah will receive also includes a handful of genetic researchers, an MCAD specific nutritionist, and an oncall Biochemical pediatrician who we can call if we have any question regarding whether or not to take Eli to the ER.
7. My Mom was staying with us when we got the news, and she stepped in to save the day with keeping things normal for Lucia. I have no idea how we would have managed without her help. It was so critical to have her here through those tough days.
8. So many friends have come along side us to grieve when we were grieving and rejoice when we were rejoicing. Community and the encouragement of others who know and love the Lord has been a life saver.
9. The challenges have shown Pat and I how we can come together to cry, pray, and encourage each other. God has blessed us with a relationship that is solid and has great depth. I don't know what I would do without his encouragement and real honest discussion.
   

We praise the Lord for his immense blessing of our son who He so perfectly knit together and has a wonderful plan for in this life. We are so honored to be his parents and to be blessed by his tiny presence in our home. Great is His faithfulness!

Elijah: Coming Home

We stayed at the hospital until Sunday morning rather than just the standard 24 hours because the pediatrician wanted to watch him for signs of GBS. Thankfully he did great and we just spend one more night on the luxurious hospital beds. ;) My mom arrived on Saturday night and was able to join us at the hospital for the last hour or so before we headed home. We were so excited to have her there so near the birth date and at our house through the first week or so at home.

Me and my boy getting ready to head home!
Nap time with daddy. I can't believe how much his face has changed already!
A family of four! We are so amazingly blessed to have two wonderful little people in our lives. They bring us so much joy.
Look at that sweet face checking out her little brother!
Here is the little squish face in his car seat for the first time. He seems way too small for such a large seat
Grandma Jana with baby Eli at the hospital
Dad and the sleepy man right after we got home.

Elijah Daniel: The Birth Story

I'd like to capture all of the wonderful memories from the day Elijah was born, so I am writing out his birth story. I am sure it will be long, so I may be the only one to read through the whole thing. :)

I had been having evening contractions for the few days before actually going into labor, so I could tell that it was going to happen fairly soon. I just kept waiting and waiting for them to get stronger and closer together. On Friday morning, around 4:30, I woke up with contractions that were decently strong and 8 minutes apart. I tried to go back to sleep but by 5:30 I realized I wasn't going to sleep through them and that they were relatively consistent, so I got up thinking that I could just start the day and we'd see what happened. I took a quick shower, which only made the contractions more frequent, so I got Pat up at about 5:45. By the time 6:00 rolled around, the contractions had moved to 4 minutes apart and I was getting a bit nervous about getting to the hospital. Pat called Chris to come watch Lucia right away and called Kathy so that she could head over to relieve Chris. Chris made it to our house in record time. I'm still not sure how he got here so fast. :) We left for the hospital at 6:45 and were checked into Triage around 7:15. By 8:00, they had determined that I was still only 2.5cm dilated and 80% effaced, so they told me that we could either head home or walk the halls for an hour to see if anything changed. Of course there was no way I was leaving, so we walked circles until 9:00. The contractions weren't too bad at the beginning of the walk, so I thought for sure that they would send us home but they got stronger and stronger toward 9:00. When I was checked out again at 9:30, I had only made it to 3cm but was fully effaced. The Triage nurse was debating about whether or not to send us home, so she checked with the on-call doctor who, thank the Lord, said that we could be admitted. It didn't take long for the contractions to really REALLY pick up speed and I was just shaking trying to work through them. They were coming fast and hard. I have no idea how anyone does natural childbirth! Anyway, I told the Triage nurse that I needed an epidural ASAP (such a pain wuss). She started moving a bit faster at that point and started the antibiotic drip for my GBS at 10:20 and I made it down to the birthing room around 10:30. I finally got the epidural and it was one of the more blessed moments in the whole process. :) I am so happy to live at a time where some of the pain of childbirth can be drugged away!

The nurse came in to check on me at 11:30. Pat and I had settled in for a lot of waiting. I had my crochet. Pat grabbed a late breakfast. It would not be long though because I had already progressed to 7.5cm! In 2 hours, I had made it 3.5cm. That was crazy fast. The "problem", however, was that I was supposed to be on the IV for 4 hours before giving birth. The target birth time was 2:20 or later. The little man was certainly not going to wait that long. The nurse started moving fairly quickly to get everything set up in the room for the actual delivery. My water had not broken, so we just tried to drag it out as long as possible. At 12:53, my water broke. Pat ran out to get the nurse and she started calling in the doctors. Elijah had been under distress at some point because there was baby stool in the water, so we had a respiratory doctor and NICU doctor in the room along with the doctor who was delivering the baby. The pain started to set in again after my water broke. It turns out that my epidural wasn't quite right. I couldn't feel my right leg at all but the crucial middle was only partially numbed. Again, I don't know how people do it without drugs! :) I started pushing at 1:03 and could definitely feel what was happening. Thankfully it didn't take long and Elijah was born at 1:08! He was whisked away to check for fluid in his lungs and stomach but, thankfully, he passed the test and he was back on my chest before the doctor had even finished with me. He was 6lb 10oz and 19in long and perfect!

It was so amazing to be able to hold him only minutes after he was born. Here is the first picture with me and then with daddy too.


The birthing process and the first few days was such an amazing time. I know that it is crazy, but I wish that I could relive it. I don't want it to fade from my memory. It seems like one of the most meaningful events in life. In just a matter of hours, God gave us a beautiful new son...a wonderful addition to our family. We feel so blessed to have him. He is tiny and amazing to me. God has been so faithful to us throughout this process. I just don't want the little guy to grow up. I want to hold on to the newborn stage and enjoy every little moment with him. He is our little miracle baby.