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.

One step forward, two steps back!

Yesterday Levi answered the question, "Will Saturday be the day?" He will not be coming home this weekend. The question was answered initially when he failed to pass the car seat evaluation. He needs to get a little stronger in order to hold his head up enough to breathe while riding in the seat. The question was also answered when the doctor came in yesterday morning and stated that after reviewing Levi's chart she had a number of tests she wanted to run on him (this poor guy has been poked and prodded SOOO much).

I will admit that yesterday was a day full of tears on my part. I am ready to have Levi home and this news was discouraging. It was hard to hear that the earliest they will run another car seat evaluation is on Monday. It was difficult to hear all of the thoughts the doctor had regarding what could be going on in Levi's body to cause the elevated bilirubin. My heart hurt to see/hear Levi having to give a fairly significant amount of blood for more tests. I just felt discouraged and beat up! I also felt very tired. I am traveling 5 times a day (every 3 hours) to the hospital to feed Levi... it is becoming increasingly draining to balance being a mom both at home and at the hospital. I definitely struggled with feelings of despair yesterday!

In the midst of these discouraging days, I have been reminded of a vision a friend received when praying for us during our time in Ohio: Then He gave me the following vision: There is small pig pen. Inside of it is a little pig. This pig is angry, snorting, shaking his head. He’s running around his pen with reckless abandon snorting and squealing. Your family (all four of you) are outside the gate watching the pig. The gate is strong and is locked. It will keep the pig inside. But the four of you are fearful, anxious that this pig will get out and come after you. The pig is playing on your fears…he runs toward you to terrify you then he turns around and, when you can’t see his face, he smiles and laughs. You become so fixated on the pig that you forget about the strength of the gate that holds him inside and the fact he is little. You forget about the lock that will not let him out.

So today I prayed against “the pig” and asked God to cast all your burdens, fears and anxieties on Him. I prayed against the evils one’s desires to prey on your fears and throw anxiousness into your path. 

I will admit that during our time in Ohio this vision did not resonate with me (other thoughts that God impressed upon her heart did). I did not have the fear or anxiety that the pig seem to represent during our time in Ohio. This vision; however, has certainly been on my mind in the past 2 weeks. I do feel like the enemy has been playing with my fears and anxiety over whether Levi is well and whether he will come home soon. It has been hard to remember that God is in control.

Yesterday did not pass with out moments of joy. Levi was moved (for a third time) to a different room in the NICU. He happened to be placed near a window that points to a public hallway in the hospital. Yesterday we were able to open the blinds on that window to let Naomi see her brother for the first time since he was born! It was good to allow her to see that Levi is real and not a figment of our imagination.

We thank you for your prayers and ask that you keep praying. We cannot wait for the day when we can share pictures of Levi's homecoming!

Praying for Saturday

The doctor has said that there is a good chance that Levi will come home on Saturday. He actually had potential to be home sooner; however, his bilirubin rebounded slightly and so he has to have several more tests run. Poor little buddy is having quite a bit of blood drawn tonight :( Saturday morning Levi will have his labs taken once again and if his bilirubin has gone down or stabilized then there is a really good chance that he will be able to go home that day! What a blessing that would be. He also has to continue to eat well... which so far has not been a problem (he can be a little oinker).

We hope to have pictures of Levi's homecoming soon (he still needs to pass his carseat test as well).

The past 24 hours....

The past 24 hours has been filled with great news and hope! Here are the highlights as we are exhausted and need to go to bed!

• Levi has been eating well. We are frequently supplementing him with bottle feedings... but he is eating like a tiger! Our hope is to be able to work up to breast feeding exclusively... he has been nursing well.
• Levi has been pooping on his own. In fact today he shot poo across the room! His poop has now become the yellow seedy poop associated with breastfeeding. This is such wonderful news since there was a question about his ability to poop on his own.
• Levi has been off the IV for 24 hours now and the PIC line was removed yesterday! It is so nice to hold him without the IV in his head.
• Today the nurse began talking about discharge. We will need to see how Levi does with feedings the next couple of days and he needs to pass the car seat evaluation (this is where he will need to be able to sit in his carseat for 2 hours without having trouble breathing). The doctor said that it is possible that he may be able to come home this weekend. Pray that he can continue to eat well, digest well and pass his carseat test.

We are so excited and eagerly anticipate the day Naomi will get to meet her little brother.

A follow-up to "Dealing with Disappointment and Discouragement"

Happy Easter! May the Lord Jesus Christ bring you His grace and peace today (and tomorrow and for many, many more days) as we are reminded of His incredible sacrifice and the awesome victory that He won on our behalf - 2000 years ago and every minute of every day since then!

I intentionally waited for a couple days to write the blog that we posted yesterday so as to not be in the deepest throes of disappointment and discouragement while writing. We do trust and believe that God has the necessary answers and will provide the necessary strength and stamina and faith to continue to entrust our son's life and health to Him.

I'm not at all sorry to have shared what we are thinking and feeling because we want to be honest and vulnerable in our sharing and because we have appreciated so much the thoughts and prayers of those that are walking with us on this journey. With that being said, however, I also wanted to share the next part of this story.

God really met me a church today. The message was about "hope" and I have been overwhelmed today with the realization and the reminder that our hope is not lost. We are guaranteed to be forgiven from our sins if we only ask. We are guaranteed to have God's help and presence as we wrestle through all of the challenges and difficulties that have entered the world with the first sin and that every human since Adam and Eve has faced. We have hope and we have victory - whether Levi is in the hospital for another day or another month. We have hope and we have victory - whether we have answers to our questions and concerns or not. We have hope and we have victory - whether we always remember it or not.

If you are interested in listening to this message we heard at church today, you can find it here. This will only be available on the church's website for the next 5 weeks, but it is definitely worth the time to watch/listen and can also be downloaded on iTunes if you would like to find it that way.

Christ is risen... He is risen, indeed!

Dealing with Disappointment and Discouragment

Levi is two weeks old today (Saturday), or, in the dating that they are using at the hospital, he is at 36 weeks of gestational age. It is incredible to think about how much has happened in the past two weeks - and how some parts of this time have flown by and others have really seemed to drag on and on and on.

We have a couple updates on how Levi is doing recently:
- He is still not needing the photo therapy treatment for high bilirubin levels - his levels went up a little bit yesterday after he was taken off the lights, but not enough to cause huge concerns.The expectation is that this up and down with the bilirubin levels will go away when he is able to digest well and poop regularly.
- His fluid intake from the IV has been gradually reduced over the past couple days. This is being done in conjunction with having Sarah try to breastfeed him every 3 hours or so (they do a bottle for the overnight shift) and he is still being weighed every day. Over the past 3 days, Levi's weight has continued to increase (about an ounce each day) even with his fluids being dropped, so we know that he is getting enough from Sarah to continue to grow. For the short run, I think that the plan will be to continue to try and decrease his IV fluids bit by bit and to continue to monitor his weight for positive growth.
- The breastfeeding continues to be a work in progress. Levi has shown that he can eat, but he is often very sleepy and difficult to keep awake. It has been hard (for him and for us) to keep the schedule that everyone feels is best for him (eating every 3 hours), but he and Sarah are continuing to struggle and fight and are gaining ground a little bit at a time. 
- Levi is getting regular suppositories to help him poop. A couple days ago, he was getting two a day and now he is down to one each day. He has pooped a couple times in the past couple days (about once every day or day and a half) and it continues to be "transitional stool" (see previous posts). This is good, but also indicates that there is room for growth and improvement.
- He is not under lights or a heater anymore and he seems to be maintaining his own temperature pretty well. He is wearing clothes now being bundled up in blankets or swaddlers and is exceptionally cute (or handsome) in his various outfits! :)

There are many huge praises in the updates above, but we are also facing some concerns and have been wrestling with some disappointment and discouragement over the past couple days as well.

The two primary presenting conditions that are causing concern (for us and for the medical staff) are the difficulties that Levi has with digesting and regular pooping and the color of his skin (an ashy, bluish shade most of the time) over the past week or so. These two concerns do not appear to be linked and neither have their causes been easy to identify.

I talked with one of the Nurse Practitioners again this evening (Saturday) and he noted that there are many, many tests that are being run on Levi and all of them that have been done so far have come back completely normal and healthy. He talked about the concept of "horses and zebras" - meaning that when something is wrong medical staff start with the ordinary/normal/regular things that they expect or see more often (the horses) and then gradually move to checking on the out of the ordinary, unusual possibilities (the zebras). He noted that we are well into the zebras by now and that there are many, many medical practitioners that are thinking and talking and consulting on this case. He also commented that Levi is basically going to be one of the best checked out kids that he has ever worked with.

One of the doctors I spoke to yesterday asked if I ever watched House, because the process of elimination that is "over dramatized" (her words) in that show is a real part of what is happening with Levi. She talked about this as being a sort of whiteboard session and that we would just continue to check things and eliminate possibilities and continue to work hard to find out what is happening with our son.

Both of these individuals (and many others) have also been very reassuring in their comments about everything that they are testing coming back normal. Levi is healthy and continues to come back with positive and normal results from everything that is being tested and he is continuing to gain weight and make progress in other areas as well.

While there is hope and reassurance and progress being made, there have also been some emotions that Sarah and I have been wrestling with and fighting lately.

When Levi was first born, the doctors and nurses told us that their standard answer to the "when will he be able to come home" question is that we could/should plan on him being there until his full gestational age (May 21 will be 40 weeks for Levi). With that being said, there were several comments made after that about how kids his age and size and with his development could often go home after a week or two. I think that both Sarah and I really grabbed on to that comment and felt that 1-2 weeks was manageable and that we would really like to see that happen. It has been really hard for both of us to recognize that Levi's 2 week date was rapidly approaching and that no one was talking about him coming home.

Over the past several days, I think that we have also really been struggling with the fact that it seems like every step forward in one areas is accompanied by a step backward in another area. It has been really hard to wrestle with the ambiguity of all the "head scratching" that everyone seems to be doing and to not have any real answers to the questions about why his digestion and color are the way they are. 

It has been disconcerting to have to reorient ourselves to the fact that it might be several more weeks of having Levi in the hospital.. We have been asking questions about how concerned the medical staff or and how concerned we should be. We are struggling with not being overly afraid about a response to these questions that will indicate some sort of serious condition and/or an ongoing, lifelong struggle for Levi.

It has been hard to balance having a 2 year old at home with the time that we (particularly Sarah) need to spend at the hospital - and it has been really hard to not be able to introduce Levi to his big sister. Naomi is continuing to do really well and has enjoyed the time she has had with both of us and with friends and family. We do talk about "Wee-Bye" (her pronunciation of Levi) regularly, but at a certain level, I think she is probably wondering about the imaginary baby that mom and dad keep talking about.

Today has been better than yesterday was and we are both continuing to pray for God's grace and peace and for His favor. We are trusting that He knows what is best for Levi and for our family and that He will sustain us and keep us all.

It has been a different experience of the time leading up to Easter for us this year, but we are exceedingly thankful for the reminder of God's victory over sin and death and disease and doubt and discouragement at this particular time! We are thankful to be able to celebrate God's mercies and His goodness for all of our family and for every person that God has created. We are appreciative of how God is revealing Himself to us through difficulties and through joys and through His people. Thank you for continuing to pray with us and for allowing God's Spirit to lead you in how to pray for Levi and for each of us!

2 Corinthians 12:9 (ESV)
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

Levi Update

Thank you, thank you, thank you for your continued prayers. Levi is pretty stable right now. He has pooped the past two nights and it has been termed transitional poop - meaning it has consisted of both meconium and normal poop. I have been allowed to breastfeed  Levi and yesterday we had 3 good feeding times. Today Levi was taken out from under the lights because his bilirubin was down nice and low. Finally, when I went in to see Levi this afternoon, his heated bed had been turned off and he had been dressed and bundled. We will now see how he is able to maintain his temperature.

God is so Faithful!

Praying for Poop

I am hoping the title of my blog post today does not offend anyone, but it is truly what we are praying for.

Drew and I returned to the hospital this morning just as the doctors were rounding on Levi (this was the plan). They are still confused about why his belly seems to be giving him difficulty. They are hypothesizing several different possibilities. 1) Levi may have a meconium plug or excess meconium that is taking awhile to get out of his system. 2) Levi is having difficulty processing food because his nerves are not all developed or because his colon is not formed right. 3) It is a metabolic disorder.

We are hoping it is hypothesis number one and so are the docs. They are going to begin giving Levi suppositories to aid in regular pooping. His belly looked better today, so I have been released to breastfeed again. If Levi begins feeding and digesting then we will begin moving forward. If he does not, then we will start investigating hypothesis number two, which will include tests where dye is introduced to his system and they can x-ray or ultrasound so see how it flows through his digestive track. The third hypothesis requires blood work tests which have been sent to the University Campus but take 2-4 weeks to get results.

Drew and I are praying that Levi's difficulty in digestion has been related to meconium. We are praying relentlessly that he will begin feeding and pooping. Please pray for poop (and poop that is starting to change over from meconium to regular poop). Please also pray that Levi will begin acting hungry and waking up to nurse. Due to the lack of digestion his bilirubin keeps elevating (creating jaundice) which makes him more tired.

We praise God this morning because we felt that there was more direction about how we are going to proceed. We praise God because we did discover that Levi would not necessarily have to remain in the hospital until the 2-4 week test came back. We praise God because He is faithful and our baby boy is beautiful! We both have a strong feeling that if Levi can get his eating and digestion on board that he would come home soon.

Thank you for the many encouraging messages and e-mails. You support has at times kept me (Sarah) standing through this whole thing.

Finding it Hard to Trust

Today has been a discouraging day. This morning I met with the doctor and she asked about what had taken place over the weekend. She is puzzled by why Levi began to have a grayish color and stopped digesting his food. She ordered a number of tests to rule reasons out. These tests included a head ultrasound to rule out bleeding and blood work to see how Levi's digestion is working. The ultrasound came back normal. Levi does not have bleeding in the brain. That was good news. The tests came back fairly inconclusive. We talked a bit with the Nurse Health Practitioner and he mentioned that there concern is that Levi seemed to get better when he stopped feeding. This makes them wonder if Levi could have a metabolic disorder in which he is unable to digest proteins correctly. When asked if he would outgrow something like this we were told no, it would be a life long struggle.


On top of all this news, we were asked if they could put a central line in Levi instead of a regular IV. The reason for this request is because regular IV's need to be moved frequently due to the little veins. Since Levi doesn't appear to be getting off the IV any time soon, they wanted to put in a central line so that it was more stable and they did not have to keep sticking him. Essentially what this means, is that they put a catheter through a vein into the heart. They did this (which ended up being in the head) this afternoon. This evening they were still unsure if they placement of the PIC IV was correct and there is a possibility that they may need to redo it.

Due to all of the things going on with Levi, they have not been feeding him breastmilk. Yesterday I was excited because they allowed me to start trying to breastfeed Levi again after a 24 hour hiatus. Levi has been pretty tired, but this morning we actually had a really productive half hour of nursing. Then tonight when we returned I was told that I was being asked to stop feeding again.

All of this news has made it a difficult day to have faith and hope. I have struggled with many emotions. I am sad because it is hard to see Levi undergoing all these tests. It is disheartening to feel like we are moving backwards and like Levi will not be coming home any time soon. I have been angry... mostly at God (a reality I am not proud of). Why must Levi go through these difficulties? Haven't we been through enough? Why won't God just allow Levi a break? These are the thoughts I have been trying to squelch. I have felt comfort. I am currently reading in the Psalms and have resonated with David as he expresses thoughts surrounding God's faithfulness... these are the Psalms I am holding onto.

I am grateful for the prayers of so many. Tonight I very clearly had the thought that I needed the prayer of the people around me to hold me up through this. It is very hard to feel like we take a step forward only to go two steps back.  Please pray for our faith to stay strong.

Psalm 22:4-5 - In you our fathers put their trust; they trusted and you delivered them. They cried to you and were saved; in you they trusted and were not disappointed.

Psalm 21:1-2 - O Lord, the king rejoices in your strength. How great is his joy in the victories you give! You have granted him the desire if his heart and have not withheld the request of his lips.

In God We Trust

I've been thinking a lot this week about a habit that my parents and at least one of my siblings have built into their lives. They are prolific walkers and/or runners, and whenever they are out and about and they see a penny on the ground, they pick it up and keep it as a reminder of God's provision. Each penny that they find (and there have been a lot of these pennies) is a tangible reminder to return to trusting wholeheartedly in God - for little things and for big things. It is also an incredible reminder that God works through little things to accomplish and overcome big things.

I've never (in my recent memory, anyway) been big on pennies. I think they are annoying and trivial and a waste of resources to produce. I also don't use cash a lot, so I don't see the change build up quickly or anything like that. In a spiritual corollary, I often wrestle with the "little things" that God asks me to be faithful to or trust him with. I want to be given the big responsibilities and I want to see God answer the big prayers, but an ongoing journey that God is continuing to walk with me on is that I need to be be faithful in every aspect of what he calls me to do, not just in the things that I think are worthy of my effort.

We have been spending quite a bit of time at the hospital this week visiting our son. Because of the location (and whatever other reasons might be available for this fleecing), the parking ramp at our hospital is a 'pay to park' arrangement. At the beginning of the week, I started doing some math in my head and I started thinking that we might well end up spending a couple hundred bucks (just on parking!) over the course of a couple weeks. Pretty much as soon as I started really thinking about that, Sarah came home and told me that she had just found out that we could get one free parking pass a day from the NICU and get discount tickets from them for any other visits. That was very exciting news for me to hear (yes - I do get excited about little things like this!) and I was tremendously blessed to know that God was actively looking and planning for ways to provide for me and my family - even before I had asked Him for anything!

We have also received numerous other free parking tickets this week - from the NICU staff and others in the hospital and random other people or circumstances as well. To share one specific story from three days ago - I had dropped Sarah off to visit Levi and I was coming back later to spend some time with him and to bring Sarah home after we were done. I heard someone calling me as I opened the door to go in the hospital and I turned around to see someone that I had never seen before motioning toward me. I walked over to her and she handed me a parking pass and said "I bought several of these today and my sister just passed away, so I wanted to give you this." I was stunned! I immediately told her that I was very sorry for the loss of her sister, and as I was walking away I started thinking that I should pray for her. As I turned around to talk to her again, I saw that they were already driving away. I have prayed for this lady and her family several times and I'm sorry that I didn't take the opportunity more immediately to pray directly for her.


This story has been an incredible reminder for me about the way that God provides from unexpected sources and also about His desire for me to be sensitive to His leading at all times. These parking passes have been God's pennies for me and His consistent desire to have me return to the phrase that is on our pennies and all our currency - In God We Trust.


As we are struggling with Levi's health and wondering what is going on and when will he come home and how will we be able to make everything work, I am thankful that God is continuing to remind me that He is in control and that He wants me to trust him about little things like our parking passes as well as for the big things like the life and health of my son.


I hope and pray that Levi will continue to be healthy and grow and develop quickly. I also continue to hope and pray that God will shape and mold me to be able to hear Him say "Well done, good and faithful servant!" I'm thankful for God's grace and mercy through Jesus Christ and for all the ways that He connects with each of us to communicate exactly what we need. I hope that God will increase my faith and trust and your faith and trust in Him just a little bit more today.


Matthew 25:21 (ESV)
His master said to him, ‘Well done, good and faithful servant. You have been faithful over a little; I will set you over much. Enter into the joy of your master.’

Asking for Special Prayers

Levi Jonathan

 

 

Today has been a day of mixed emotions! This afternoon we received a phone call from Levi's doctor. She was calling to update us on Levi's condition. Due to a change in his color (he was a bit ashy looking today) and a difference in his activity level (he was incredibly lethargic and passive) she was a bit concerned that he may be coming down with an infection. They were running labs and had begun antibiotics. She also told us that they had officially heard a murmur when listening to his heart so they had ordered the ECHO cardiogram. It was a difficult  phone call to say the least. 

Later in the afternoon Drew and I were able to see Levi and be at the hospital for his ECHO. The ECHO revealed that Levi has what is called a PDA which is a small hole that is relatively common and which should close up on its own. This is good news because the concern had been that he had a VSD which can be a more threatening congenital heart defect.The other good news was that Levi's bilirubin had decreased significantly so he had been taken back off the lights.

This evening we returned to see Levi only to be told that he had not digested the feeding they gave him 3 hours before. He had also spit up. They were choosing to hold his feedings for the time being and were going to retrieve a urinalysis to rule out at UTI. We could tell he did not feel good tonight. We were unable to attempt breast feeding, but they did allow us to snuggle with him for quite some time.

As his parents it is hard to see/hear that he is not feeling well and to not be the primary caregiver for him at this time. It is also hard not to be discouraged because we seem to be backtracking. While we want him to be fully READY to come home, it is difficult to be patient for when that time may be.

Please pray that Levi's cultures help to determine what is causing him discomfort. Please pray that he begins to show signs of improvement. Please pray that we can begin to move forward again. 

Levi is a truly remarkable little man.

A couple updates on Levi

Levi has been doing really well during his time in the NICU. For those of you that are checking this blog and praying for his continued growth and development, we want to say thank you and take the opportunity to give a couple updates on his progress/status.
- Levi has been off of the CPAP machine that was helping him breathe for almost 3 full days now. The nurses tried to take it off early in the morning the day after he was born, but we wasn't ready for that yet or able to manage his breathing independently yet. They tried again several hours later and he did great. After a couple hours, they put away the CPAP machine and thought that if he needed help, they could intervene with temporary assistance. For the past 3 days (since 10am on Sunday morning), Levi has been breathing completely on his own and has not needed any interventions! Praise the Lord!
- A couple days ago, Levi measured high on his bilirubin levels, so he has been enjoying a "tanning bed" for the past couple days. This seems to be going well for him, but I don't yet know how long he will need to do this. He "wears his sunglasses at night" (yes, I have been singing that song to him) and during the day and seems to not really notice the tremendous amount of light shining on him. In talking to the medical staff today it is likely that they will remove the light tomorrow. Pray that he will not have to go back under.
- Sarah and I have been able to hold Levi several times a day for the past several days. Sarah is working hard with him to try and get him interested and accustomed to breast feeding and he is making a few small movements in that direction. He has a feeding tube that runs through his nose and into his stomach and so he is getting breast milk that way several times a day as well. Today they attempted to increase the amount of milk that he was getting. He did handle the digestion of the milk very well and they needed to empty his tummy. Please pray that his system will start digesting the milk properly. The goal is to be able to increase his feedings so that they can remove his IV (mommy & daddy look forward to this day, since they have had to move the IV several times due to swelling). Increased feedings = decreased chance of jaundice, increased bowel movements/wet diapers and weight gain! Please also pray that Sarah's milk comes in. Sarah is praying that it flows to the extreme!
- He seems to maintaining his body temperature pretty well also - though this is not completely clear yet because of his light treatments.
- Levi has some pictures of his sister and a couple books and a little stuffed animal to make him feel a little more at home! :)

We are being told that the main challenge for Levi to overcome in order for him to be able to come home is that he will need to be able to eat well and maintain/increase his body weight. He is taking small steps, but this is still a significant journey for him. We are thankful for the excellent care that he is receiving, and we are working hard to be patient, but we are also excitedly awaiting the day when we will be able to bring him home and introduce Levi and Naomi to each other and continue this journey at home! Please pray for this reunion. It is hard for Naomi to understand why she cannot see baby Levi. It is hard as parents to not have the siblings meet.

Again, we appreciate your thoughts and prayers! We have told Levi several times that he has a lot of people praying for him and that he is living out a great story of God's faithfulness and compassion through His people! We will try to post several photos in the next few days.

The Momma's Perspective

 Thank you, everyone for your prayers. It has been a CRAZY 72 hours! We went from being told that there was a 98%  chance that we were two weeks away from delivery to having a 34 week preemie all in the span of 24 hours!

Thank you for your prayers during labor! It was painful and at times SCARY! I often felt disheartened and overwhelmed, but God carried me through. I praise the Lord that I was able to stay strong and in the end deliver Levi naturally (not through c-section)! This was something we had considered early on but when we went in on Friday I was preparing to have a repeat c-section. I am grateful that throughout labor Levi never looked unhealthy. I also THANK GOD for Mr. Monahan - he administered the epidural.... what a wonderful man :) 

Thank you for your prayers after delivery. I have had an amazing sense of peace and calm since Levi's birth. While it is hard not to have him at home we know he is in good hands at the hospital. We are grateful for his early progress (he had assistance with breathing for less than 24 hours). We are also grateful for the closeness of the hospital (less than 10 minutes away - 1.7 miles to be exact). Levi did not have an infection and his tests have been very positive. We have been able to hold Levi several times in the past two days and are enjoying our new little man very much. The NICU staff start by telling all parents to anticipate their baby coming home close to his actual due date; however, Levi's doctor anticipates he will be home sooner - perhaps in 1-2 weeks.

Thank you for your continued prayers. Levi has several hurdles to meet. First, he needs to consistently breathe on his own (this one is looking good). Second, he needs to be able to maintain his body temperature (there have been early positive signs). Third, he needs to learn how to suck, swallow and breathe (this will be our biggest challenge).Please pray that Levi will be hungry when I go to nurse. Pray also that I will be able to breastfeed this little man. I struggled to feed Naomi after her birth. Please pray for my patience and my perseverance. It was WONDERFUL to attempt nursing tonight and to see Levi respond. Pray that my milk comes in abundantly.

It has been interesting to reflect in the past 24 hours how parenthood changes you. I remember feeling incredibly anxious and unprepared to take of a newborn when Naomi was born. After her birth I stressed about every little thing... was she eating enough, why wasn't I producing milk, was she gaining weight, was I meeting her basic needs. This pregnancy, while it has had many reasons for alarm, has really found me in the place of trusting the Lord with all my heart (Prov. 3:5) and experiencing peace that surpasses understanding (Philippians 4).

I appreciate your prayers and support and look forward to sharing with you how God continues to meet Levi and my needs!

Levi Photos