Home!

I've been a little slow in sharing that we are HOME!  Lydia was discharged from the NICU this last Monday (January 6th).  Since we do not have a team taking care of Lydia any more and clean blankets are no longer a call button away, finding the time to post any thing has been difficult! Joel and I are both in that new parent mode... exhausted all the time!

Ready to hit the road!

Monday was a LONG day.  It wasn't clear in the morning if we would be discharged or not.  Lydia had to have an ultrasound of her head, spine, and kidneys.  She also had to have a scan of her bladder.  Multiple doctors had to sign off on her and give their follow up recommendations. We had to make sure we had all the supplies to do her dressing changes at home. It just seemed to never end.  By the time everything was in place Lydia and I were both exhausted and ready to just spend the night. But we pressed on and left the hospital around 7:30 pm on the coldest night the Twin Cities has seen in 18 years! (For those living in warmer regions - our high that day was negative 12!) I was so thankful that all the staff I had found most helpful during our stay were on duty that day to get us home.

Once we made it home, Joel and I stood there looking at our precious bundle sleeping in her Moses basket.  Joel said, "I can't believe they let us take her home!"  Pretty much what I was thinking at that moment as well. When you've been used to monitors telling how your baby is doing for the last week it is hard to transition to no indicators at all. I lay there in bed afraid to go to sleep - because if something were to go wrong there would be no alarm to alert me. We made it through the night though - and the subsequent ones as well. We are slowly but surely figuring things out. Life has changed completely, but we would never want to go back - even if you offered me a full night's sleep! We are completely indebted to my mom for feeding us, keeping the kitchen clean, doing all the laundry, and being my chauffeur while I'm still on percocet. (Yes, sleep deprived and on meds - Scary!)

Lydia is absolutely beautiful and I cannot stop staring at her. Except for the stitches and the incision on her back (which is healing well), everything seems perfect.  I can almost forget about her diagnosis and challenges that still lay ahead of us. I usually want to forget about all that because it can be overwhelming. I only share these next things so that you can continue to pray for my sweet girl.

She's not sure what she thinks of bath time....

It was extremely difficult to hear some of Lydia's test results on Monday before we were discharged. The ultrasound of her spine showed a tethered spinal cord. This condition can cause some loss of muscle function to the legs, bowel, and bladder. Most likely this will require some sort of surgery in the future.  She was also found to have a large bladder which the MD said is consistent with a  neurogenic bladder. This basically means that due to some of the nerves that control the bladder not forming properly there is problems with the bladder storing urine or emptying urine. I knew all of these things were probably going to be issues before Lydia was born. But it didn't make it any easier to hear them confirmed. We continue to be thankful that her head ultrasounds are looking good. However, I'm her mom and my heart can't help wanting everything to be healed so she doesn't have any medical challenges to face.

Being cooperative for her scans

As you pray for Lydia, please continue to ask for healing for her spine and bladder. Pray for me not to be discouraged as I care for her.  Right now diaper changes often make me tear up as it is so difficult to keep her dressing on and her incision clean. Getting her in the car seat is tricky as she has to be on top of a foam circle to protect her incision and has a 60 minute limit for being in the car seat. Also pray I would have grace as I deal with all her medical follow up.  We will continue to have follow up with a neurosurgeon, a urologist, and physical therapy. I've been on the phone making 4 different appointments for her already this week. Nothing has been communicated as it was listed out in out discharge instructions and I find myself arguing with schedulers about what the doctors said to me in the hospital versus what they are trying to schedule Lydia for.  I'm thankful for my knowledge of the medical system and ability to understand what the doctors are saying. I don't know how other people do it!

All that being said, we continue to trust God to carry us through and give us the grace we need in the moments we need it.

Psalm 138:8 "The Lord will accomplish what concerns me; Your lovingkindness, O Lord, is everlasting."

Thank you for your prayers,
Joel, Amy, and Lydia

My little sweetheart

Can't believe she is so little...

First family dinner

To learn more about the challenges Lydia may be facing you can read the following pages. Lydia has a myelomeningocele.

http://www.mayoclinic.org/diseases-conditions/spina-bifida/basics/treatment/con-20035356

http://www.childrenshospitaloakland.org/main/spina-bifida--myelomeningocele--neurogenic-bladder.aspx