First Week At Home

A lot of people have told me that we must keep this blog going so that you guys can watch Levi grow up. It is an honor to our family that so many people love Levi so much. Our prayer would be that others that embark on similar journeys in the future might find this blog and in turn find encouragement or advice on how to handle things. 

Levi still has a long road ahead of him. We do not know how well his eye sight will be due to the ROP and surgeries that followed. We have no idea what his developmental level will be due to the brain bleed. Hopefully the shunt helps that situation as is should. We do not know how well his lungs will heal but hopefully he will outgrow those issues. The truth is we still have to trust that God will continue to heal Levi. He already has shown us many miracles in this short journey. Please continue to pray for these things.

Levi had his first Pediatrician appointment this week and they said he looks great for where he is at right now. He weighed in at 9lbs 7ozHe will still be followed very closely over the next couple of years. He also saw his eye doctor this week and we were told his retinas look good and he has a good chance at decent vision. Coming up Levi will start physical therapy and will see his doctors at the specialty clinics. These appointments are meant to follow the more complex issues Levi has and give him a better chance at good outcomes.

On another note the number one protection we were told to give Levi right now is to keep him from respiratory infections. Although this is not a high risk season we still plan to be over protective of him. Right now we are only allowing immediate family to hold him. We are asking everyone to wash up upon entering our house. We are not taking him out except for his doctor appointments. I realize many of you really want to meet him and love on him. We just ask that you bear with us for a while. One cold can put Levi at risk for death or at least a trip to the hospital. We are only at home now because the NICU doctors trusted that we could provide Levi with the high level of care he requires.

Pics From the Week:

Meeting my Cousin Abby For the First Time

Waking Up Sleepy Head Mommy

Big Crib For a Little Guy

Levi Relaxing With His Dog Elwood

Very Sleepy

We obviously new this wouldn't be easy. We knew we would be worn out and wouldn't get to sleep much. Just knowing that doesn't prepare you for it though. We are so blessed to have plenty of help from family so we can catch naps when Levi doesn't want to. Levi also got a visit from his uncle Rajesh this weekend which is always fun. Levi has really made a good transition home. There haven't been any major hiccups and his monitors and oxygen are easy enough to use. He has a pediatrician appointment on Tues and eye doctor appointment on Wed. So please pray for good results. Please pray for Levi to continue growing and his airway to heal. Please pray that he doesn't catch anything now that he is outside of his sterile environment. We plan to keep the blog going so that all of you can follow his development. 

Welcome Home Levi

After 161 days spent in three different Nicus Levi came home today. His final weight was 8lbs 9oz being 7lbs over his birth weight. We are both excited and scared. We were sent on our way with a whole list of medications and upcoming appointments. Please celebrate this victory with us and also continue to pray. Levi still has a long road ahead. We have a heavy load on our shoulders.

Praise God from who all blessings flow



Great Results Again

The surgery went as well as it could have. Levi did not have to go on the vent. He slept through the procedure. He woke up around six and already took down a bottle. Thanks for all of your prayers. It looks like we will be home this weekend as long as there are no setbacks. Please pray that he will not have any infection. I will keep you all posted.

Hernia Repair

The hernia repair is scheduled for around lunch on Tuesday. Please pray for a good surgery without needing to put him on the vent. Please pray for a quick recovery. The plan is to discharge him Friday or Saturday if all goes well. We are getting setting up with the home health people and filling his medications. Its so close but along with all of the joy is alot of stress and anxioty. I will give a follow up of how things went tomorrow.

Final Hurdle

Levi has taken all of his feeds from the bottle for a few days now. This is huge victory because the doctors didnt think he could get there. Now the hernia repair is scheduled for Tuesday at 1:15. We are hoping it can be done without him going on the vent. Levi is supposed to be discharged as soon as he fully recovers. This could happen as early as Friday of next week. Please pray for the upcoming surgery. Please also pray for us as the anxiety builds. Levi will have a lot of follow up appointments, medications, and even o2 at home. This is a huge responsibility to take on but we are glad to do it. Please also pray as we are in some transition with our health insurance. We are unsure about how all of this will play out with our finances. He has taken care of us so far so we must continue to trust Him. Obviously thats easier said than done.We often catch ourselves worrying about those sort of things.

Father's Day

Levi has had a big weekend. Yesterday he got to see his Aunt Shannon for the first time in a long while. Today he had his first real tummy time on his tummy time mat. He was able to push up quite a few times and really liked the colors and attached rattles. He is still doing great with his feeds taking almost two ounces per feeding. The doctor plan to let him loose on the bottle soon. He will get to take it "on demand" instead of being regulated so much. The hernia repair may be this week so please be praying for that. We dont want this to cause a set back. Speaking of set backs you will see Levi back on the nasal cannula. The doctors are not concerned because they believe its due to increased work of feeding. For a baby like Levi with chronic lung disease it really wears him out. Hopefully he can come back off of it before he comes home. We are OK with it because its a better option than getting the G-tube.