Levi is plugging along ...

 It had been awhile since we last updated everyone on "little" Levi, so I thought I would let everyone know how he is doing!

Earlier this week, (9/21/11) Levi had his NICU follow-up appointment. This is a standard appointment for the NICU doctors to make sure any outstanding concerns have been rectified and that developmentally there are no concerns. 

When Levi left the NICU, the concerns were elevated bilirubin and TSH (protein) levels, fluid around his kidneys and anemia.

As of September Levi's blood levels have all normalized!!! WOOHOO! Mommy (and Levi) were ready to be done with all the heel pokes!

We will know more about the fluid around Levi's kidneys in November when we meet with the pediatric urologist for a follow-up appointment.

Developmentally, Levi is doing well. He is developmentally between 4-5 months which is to be expected since he was born 6 weeks early. The Occupational Therapist recommended that we just focus on providing him opportunities to work his core muscles!

His big stat is that he now weighs 15 pounds 8 ounces! He is a healthy boy.

Thank you for your prayers for this little man.

Below I am including several  photos from the past few months! Levi has become a very HAPPY, TALKATIVE and DETERMINED little boy!

Where have we been?

It has been weeks since we have given an update. We have had the best intentions but blogging seems to always be in competition with sleep and sleep inevitably wins! 

Life with Levi has been a rollercoaster. More accurately life with Levi and Naomi has been a rollercoaster. We have had our good days and our bad days and we are still attempting to figure our life with 2 children. 

Levi is very healthy! At his last pediatrician appointment (6/21) he weighed in at 10.5 pounds. His labs were taken that same week and it would seem that his bilirubin and THS levels have gone down. It was the pediatricians opinion that by his 4 month appointment these levels should be in the normal range and that the continued elevation was strictly due to prematurity! This means that we have a 6+ week break from doctor visits! 

We have noticed that life with Levi has been a HUGE adjustment! Balancing feeding Levi, feeding Naomi, naps, and playtime with big sister has been a challenge that I have yet to master. Levi, while a joy, is a VERY different baby than Naomi was. For the first few weeks of life he was fussy whenever he was awake. This meant he was constantly in someone's arms and even then usually screaming. Levi is also very sensitive to noise. It is extremely difficult for him to sleep if we are at the park of driving in the car. He is only restful when it is quiet around him. The one area that Levi and Naomi are alike as babies is that they both LOVE(D) to be cuddled!!! In the past week Levi has been fairly adamant that he would like to be held even during naps! This has made for some long days of battles since I do not want to start that habit!

 

It has been difficult to know how to be a mom to both my kids. It often seems that Naomi is getting the short end of the stick. I find myself losing my patience quicker and having to tell her no or wait a lot. She has really adjusted well overall, but I know it has not been easy! God has been teaching me first hand about my dependence upon him! There have been many days that I have not felt as though I was going to make it through and I am continually asking Him to re-charge me and to change my attitude (there are also many days where I fail to do this and there are tears and harsh words).

 We are continuing to take things day by day! I am learning that some things in life just fall by the way side with two. My house is not as clean, sleep is in short supply and "little catastrophe's" occur more often. This last one has been learned through experience. In the past several weeks, I have come out from the bathroom to find Levi lying sideways in his swing (Naomi was trying to get him because he was fussing); I have come out from putting Levi down to find a whole bottle of baby powder empty in my living room (Naomi was washing and changing her baby); while attempting to feed Levi and Naomi at the same time watched the cat lay on top of the wet finger paintings (anyone want a furry friend - I'm not kidding); and have come away from the dinner table only to find Naomi's feet and hands covered with lipstick (if anyone needs a makeover, she is good ;).

Naomi's attempt to get Levi out of the swing

Powdering our baby doll

 

 

 

While life has had its ups and downs in the past few weeks, I wouldn't trade these kids for the world. My heart fills with love when I look into Levi's inquisitive eyes or hear his little coos (we are still eagerly awaiting his first smile). I am overcome with joy when I hear Naomi's giggles, when she asks to "peek" at Levi in the morning and when we sing and dance together at night. I am truly blessed and thank God for these little ones!

Life since bringing home Levi!

Levi arrived home on Saturday, May 13th!

Life since has consisted of bonding with his sister!

 Spending time with our complete family!

 Giving Levi his first bath... he loves the warm water.

 Cuddling and sleeping (well Levi gets lots of sleep... Drew and I are recalling the exhaustion of a newborn)

 Having FUN as siblings!

 Hanging with Grammy Norton

 Meeting Great Grandma Gerry and Great Grandpa Gus

Levi is doing really well! Last week he was weighing in at 6 pounds 15 ounces. Most of his blood work concerns seem to be stabilizing (his anemia readings on on the rise and his thyroid level seems to be leveling out!). The one concern that still remains is his bilirubin level... it is still high. We did have another ultrasound of the liver though and all looks GOOD! Levi is doing really doing GREAT!

Levi and Naomi are also doing great. Naomi is extremely gentle with him and likes to have him around. We will often give her the option of going places with mom or dad and letting Levi stay home with the other parent. Her common response is to say that she wants everyone to run and errand together. It is sweet to see her embrace Levi. Her favorite thing is to hold Levi's hands... she gets a huge smile when he grips her fingers or tries to suck on her hand.

In other life news... we survived a tornado which tore through North Minneapolis on Sunday, May 22nd. We heard sirens, turned on the news, ran upstairs to get Naomi and as we were running into our basement heard the "freight train" sound and saw our neighbors tree falling towards our house. Within minutes it was over... but now the real clean-up begins.

Our house with our neighbors tree in front of it! We only have minimal damage (a partially broken gutter and two broken screens).

The house and tree directly across the street from us!

These two trees are not only on power lines, but have also landed on the garage of one home located 5 houses up from ours!

This house no longer has a roof. It is located 3-4 blocks behind our house!

This car was demolished in the storm. This photo is only 4-5 blocks from our home!

 

More tornado devastation.

 

 

 

 

 

Here is a harder hit home!

We feel very fortunate that the Lord protected our home and family. We really were blocks from being in the center of this storm. The biggest difficulty we have experiences since the storm has been the lack of power. I am writing this blog on Wednesday, May 25th in the evening and we just received word that our power has been restored. We have been staying with our good friends in St. Paul which has been a HUGE blessing! We praise God for good friends, for protection and for mercy in the midst of devastation. We ask God for his help as our neighborhood and community rebuilds. We live in in a low economic area so this disaster has truly created crisis for many who do not have additional resources. Please pray that God will direct us as to how we can be used for His glory in this situation!

Happy Mothers Day - LEVI IS HOME

It is an incredible blessing to share with you that after 29 days in the hospital, Levi arrived home this afternoon! We had been hopeful all week that this weekend would be his homecoming, but yesterday seemed to be pointing the wrong direction again with a new doctor being on for the weekend that we had never met with and with unclear communications about what he and the medical staff were hoping for and wanting to see before they would let Levi go home.

After spending some time on the phone with the doctor last night and having relatively positive results from Levi's labs this morning, however, we are thankful to the Lord that he was cleared to come home! We spent our last several hours at the hospital this afternoon feeding Levi and waiting and saying goodbye to Levi's NICU roommate and his parents (they were discharged a couple hours before we were) and talking with several nurses as we were getting discharged. Levi was pretty popular with the nurses in the NICU, so we have several requests to come back and visit (not stay!) in the coming weeks and months.

It was a pleasant and joyful time to bring Levi home and let he and Naomi start to get acquainted and to start our journey of having 2 kids at home. It will take a little time to fully recognize what this means for her and for our family, but it was a great start today. Our friends that were spending the afternoon with Naomi while we were at the hospital have a 3 year old (Andrew Norman) that was effusive in his thanks to us for bringing "the Levi" home so he could play with him! Naomi is interested and (relatively) gentle with Levi and we are so thankful for both of them and for their current and future relationship!

Levi will have a busy schedule over the next several weeks as he has appointments with his pediatrician and several specialists for follow up visits after some of the tests that have been run on him. We feel encouraged by his progress and thankful for being able to bring him home, but we also recognize that he has some further growing and developing to do. One of the nurses today told us that he will really continue to have two "birthdays" (one for the day he was born and one for his actual due date) as he grows up. We are happy to celebrate Levi's 4 week anniversary of being born today as well as his negative 2nd week anniversary of his actual due date. We are also trusting that as he starts to understand these things, no one will spill the beans and tell him that he has two birthdays - and since I'm sure you are all trustworthy, then we won't have anything to worry about in this area.

Thank you for continuing to pray with us and for us! I anticipate that we will continue to share stories and thoughts and pictures on this blog and trust deeply and hopefully that God will continue to be part of every step of our journey - both for Levi and for the rest of us as well. I want to wish my wife a very special "Happy Mothers Day" tomorrow and to thank God for giving her the best gift that we could have imagined or asked for at this point! Celebrate God's goodness with us today!

Psalm 133:1-3 (ESV)

 Behold, how good and pleasant it is
when brothers dwell in unity!
It is like the precious oil on the head,
running down on the beard,
on the beard of Aaron,
running down on the collar of his robes!
It is like the dew of Hermon,
which falls on the mountains of Zion!
For there the Lord has commanded the blessing,
life forevermore.

Thinking about Aaron and Hur

A couple nights ago Sarah and I were walking out to our car to drive the 1.7 miles home from the hospital after spending some time feeding and holding Levi. I shared with Sarah that I had been holding Levi and looking at him and praying for him in that room and that, in the middle of that time, I had felt really overwhelmed with the reality that there are so many people - some who we know and some who we have never met - that are praying for our son and our family and pleading to God on our behalf. I feel amazed and encouraged and humbled and blessed and overwhelmed by all the support that we have felt on this journey. I even sometimes feel guilty (that's not really the right word, but I don't have another one to use right now) - because there are times when I know that others are praying for my son more than I am or more than I can.

As I was sharing this with Sarah, she commented to me that she didn't think that I needed to feel guilty about that and asked if I remembered the story of Moses having his arms held up during a battle that the Israelites were fighting. We talked a little more about this and I remember thinking that this was an incredible example of how I (and Sarah) don't feel that I/we can do this all on our own, but how God has faithfully provided the strength that was needed - often through the lives and prayers and service of others.

I read through this story again tonight and I wanted to share it with you here as well:


Exodus 17: 8-16 (ESV)
Then Amalek came and fought with Israel at Rephidim. So Moses said to Joshua,  "Choose for us men, and go out and fight with Amalek. Tomorrow I will stand on the top of the hill with the staff of God in my hand." So Joshua did as Moses told him, and fought with Amalek, while Moses, Aaron, and Hur went up to the top of the hill. Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. But Moses' hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun. And Joshua overwhelmed Amalek and his people with the sword. Then the LORD said to Moses, "Write this as a memorial in a book and recite it in the ears of Joshua, that I will utterly blot out the memory of Amalek from under heaven."And Moses built an altar and called the name of it, The LORD Is My Banner, saying, "A hand upon the throne of the LORD! The LORD will have war with Amalek from generation to generation."

There are several incredible things that stand out to me from this passage:
1) Moses' hands are not empty. He is holding "the staff of God" in his hands and the author is pointing toward the significance of Moses being the vessel or the person that God is using, but clearly reminding us that this was only being accomplished through God's presence and power.
2) Even with the staff of God in his hands, Moses couldn't do this on his own. Aaron and Hur provided support for Moses. They gave him a place to sit and held up his arms when he couldn't hold them up on his own anymore. God chooses to work through people (individuals and groups), but he seems to have clearly designed us for community, and Aaron and Hur show up as God's helpers for what He has called Moses to do - and perhaps provided the quiet, humble service that made something great possible.
3) In the chronology of the Israelites being led out from captivity in Egypt, this is the first battle that they have had to fight. They have certainly faced other challenges (Egyptians chasing after them, hunger, thirst, etc...), but this is the first time that they have had to pick up their weapons and trust God for the outcome of the battle. I find it significant to note that they (all the Israelites - including Moses, Joshua, Aaron and Hur) didn't have any experience with this. They had to trust that God's Spirit and presence would be enough for them and would equip them to make it through this new challenge. They knew they could trust God because He had already met their needs, but they hadn't been in a battle yet.
4) God told Moses to write this story down... There may have been many reasons for this, but at least one of them was for me to be able to read this story and connect it to my own life and my own situation and my own battle. Writing something down allows it to be remembered and allows it to become a permanent part of the shared experience. I'm terrible at journaling and not very good at writing letters, but I trust that if God is asking me to write this down, then God will use this blog as a reminder of His faithfulness and His mercy and His grace and His goodness and His sovereignty for me and for my family and for others.

I am done with my sermon now - actually it can't be a sermon because it has more than 3 points, so I'll have to think of something else to call it, but I'm done with whatever it is.

This seems a small and very inadequate way of expressing this, but I want to share a little bit about some of the people that have been Aaron and Hur for us over the past months:
- Sarah's mom (Darcie) has been staying with us since Levi was born. If we count the trip to Ohio she made with us and the time she stayed after that surgery as well as the past several weeks she has been here, she may not be able to claim being a full-time resident of Hibbing this year. Darcie - you have been an incredible blessing to us! You have allowed our lives to continue on in the midst of difficulty and have been a rock for Naomi in the midst of uncertainty.
- Our church has come around us in many helpful ways - both from people that we know and people that we have never met. We have had many people bring meals to our home and some good friends came to paint Levi's room and encourage us with their presence and a freezer-full of food.
- We have regularly received notes and gifts and prayers that have provided encouragement and hope and peace and again, these have come from both people that we know and people that we have never met. When I think about the number of people that are reading this blog and regularly praying for Levi, my heart overflows with thankfulness for each of you.
- We have family and friends that have called and emailed and spent time with us and prayed for and with us - they have allowed us to express our hearts safely and have given strength and encouragement and support in ways that we cannot fully explain and that deserve thanks that we cannot fully express.
- We have a Savior that has been by our side every step of the way and that has been holding our family in His hands in a way that no one else could have done.

Each of you have been Aaron and Hur for me and for Sarah and for Naomi and for Levi over the past weeks and months. In the times that we have been too tired or too emotional or too frustrated to continue fighting, our arms have been lifted up. I don't feel guilty that there are others praying with me and for me, but I do feel grateful. I don't have any sense that this story is over, but I am hopeful for how God will continue to move. If we face other challenges and obstacles in the coming days, there will be disappointment and discouragement again I am sure, but I am thankful that we are not in this alone and I am thankful that we all together can turn to God and trust Him.

A Step in the right direction....

Thanks for your prayers! Levi passed the car seat evaluation!

Levi

I realized it has been several days since we last posted on our blog. Here has has been the latest:

Saturday 4/30 - The doctor informed us that she had consulted with several specialists and several of the concerns that she had, had been relieved by several of the specialists. Levi may need to visit several specialists post discharge but none of the them wanted to see him currently. The hematologist did agree with the doctor that Levi was headed towards becoming anemic so they put him on vitamins, increased his iron supplement and started a series of injections of a certain substance that our bodies naturally produce. This treatment would require that Levi stay in the hospital throughout the coming week.

Sunday 5/1 - Levi's bilirubin seemed to be stabilizing... this is good news.

Monday 5/2 - Essentially we are waiting for this treatment to run its course to see if it raises his Hemoglobin level... there was an elevated protein level that concerned the doctor. I was glad to be around while the doctors were doing rounds since I had been under the impression that the injection treatment would be finished on Wednesday a.m. and was told it would not be complete until Tuesday 5/10. We were able to change the frequency of injections and so now Levi's last treatment will be on Friday 5/6.

Tuesday 5/3 - Levi has had trouble bottling in the past 24 hours. He has choked on the milk and has stopped breathing (apnic spells) several times. We are not sure why he is doing this, but I have been discouraged since until now he has been eating WONDERFULLY!

The doctors are saying very little about when Levi can come home. I am praying that he will be home for Mother's Day. The best gift would be to have both my kids under the same roof! For this to happen, we need Levi to stop having problems bottling, we need his hemoglobin levels to continue to rise and we need him to pass his car seat evaluation. I will admit today it has been hard to hear several other babies being cleared to go home... it is hard not to question the Lord regarding his plans. Levi keeps having unusual things come up to keep him in the hospital it really is mind boggling as to what purpose the Lord has for our family.

Today I am beginning to board in the hospital so that I can feed Levi throughout the night. He is nursing really well... though I still question my supply. When he nurses he never has apnic spells.

Thank you for keeping us in your prayers. We appreciate everyone's support.This has been one of the harder things I have had to go through.