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.