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

Exciting Progress

Our little beauty

We wanted to let everyone who has been praying for our sweet girl know about the progress she has made in the last 2 days.  There have been a lot of "firsts" and we have thoroughly been enjoying every single one.

Yesterday Lydia was able to have her last IV removed.  She is now only hooked to a heart monitor and a probe that measures her oxygen level.  I came down to do one of her feedings and found they had put a shirt on her... and got ridiculously excited about her wearing her first clothes.  Lydia was keeping her temps up enough that she was able to ditch her NICU bed with a warmer on top and be put in a crib.  Every step we take towards being "normal" puts a huge grin on my face.

First time in clothes!

My surgeon for the C-section decided I could be discharged yesterday evening. Since I'm feeding Lydia every 3 hours I still can't go home. Joel and I were moved to a boarding room (kind of like a hotel room) down a different hall of the NICU. Since Lydia was in a crib and needing minimal monitoring  she was able to be put in the room with us. She is still hooked up to monitors in this room and she still has a RN  following her.  But who cares?  We finally had our fist family sleepover! Joel and I were so excited to have our girl with us. We figured life would be much easier when we weren't having to go to another floor to visit or feed her... or wonder how she was doing while trying to sleep. 

New digs!

Easier might not have been the right word... we spent our first sleepless night with Miss Lydia.  Eating and sleeping were not on her agenda for our first night together.  Her diaper changes are particularly challenging because of the dressing on her surgical site which often has to be changed at the same time as the diaper. Who knew a teeny tiny baby could make it so difficult for two adults to get changed. Despite the fact that neither of us could put together a coherent sentence by the time the sun rose, it was still a great night. Having Lydia in the same room as us finally made both of us feel like her parents and like we had some control in taking care of her.  If that means sleepless nights... we'll take it!

Today just continued the bliss. I loved having my precious girl with me all day.  The RNs say she is doing great at her feedings. She had her first nap with Daddy, her first bath, and her first time in the rocker with Grandpa!  Life is good.  

The best part of the day was our update from the neurologist.  He told us that her head has been looking good.  There is no sign of fluid accumulation in her brain. He said we aren't completely out of the woods yet... but it is looking like she will be one of the 5% of kids with a myelomeningocele that does NOT require a shunt in her head.  Praise the Lord! The surgeon said she is one of the lucky ones.  I don't believe in luck, but I do believe in a God who listens to prayer and heals.

I know I keep saying this, but... THANK YOU!  Thank you for your continued prayers for Lydia.  We are grateful.

Love, 
Joel, Amy, and Lydia

 

 

 

 

Happy New Year!

Well this was not how we anticipated spending New Year's Day... but Joel and I both agree it has been pretty sweet. We are both extremely tired... as you can see in our first family photo since the operating room.  Lydia is exercising her lungs, which we were happy to hear. Amazing how two days with this little bundle has completely changed our definition of what a good day is!

Lydia had surgery on her spine yesterday afternoon.  She came through surgery beautifully.  It was horrible to watch her fight and pull at her breathing tube as she began waking up.  So we were extremely grateful when she was stable enough to have it pulled at 1:00 this morning.  I couldn't sleep until I knew it was out! Later that morning we got more good news as they decided I could hold Lydia and feed her.  I hadn't been able to do either since she was born and it was killing me.  I started crying as soon as the RN started to put her in my lap. Lydia ate like a champ. She kind of seemed to give me a look after that said, "What took you so long? These cheeks aren't going to stay plump all by themselves!"  Sorry, Baby Girl... It wasn't fun for me to make you wait either!  We are both glad those restrictions are over!

There have been lots of questions from Lydia's fans (I told her she has lots of them) as to how long we will be here.  We don't know the exact answer to that yet.  Her operative site on her back still needs to heal some more and and she'll need intravenous antibiotics until then to reduce the risk of infection to that site. For the next few days she can't be on her back at all as nothing can put even the slightest amount of pressure on her incision. They are continuing to measure her head every day to make sure she isn't accumulating fluid around her brain. This can sometime happen after the surgery she's had on her spine.  Some of the nerves impacted by her spinal defect can affect her ability to urinate on her own. She's had some trouble with that so we aren't sure if its related to recovering from surgery or if this is because of the nerves affected. Then there is the matter of her eating.  While she was a champ this morning, we've had only limited success since then.  They said this could be due to her still recovering from surgery and being extra sleepy today. However, if she doesn't pick up the pace she may end up with a feeding tube down her nose.  

Our specific prayer requests would be:

1. That the incision on Lydia's back heals well and does not become infected.

2. That Lydia's head measurements remain normal and she doesn't develop hydrocephalus 

    (fluid accumulating in her brain).

3. That Lydia would be able to urinate on her own consistently.

4. That Lydia would get the hang of breastfeeding so we don't have to resort to other interventions.

5. That Joel and I would be able to rest well despite a hectic hospital schedule full of interruptions, so we can      be our best for Lydia and get her home!

Thank you, thank you, thank you for all of your prayers and support.  I am absolutely overwhelmed - in the best possible way - by all the people following Lydia's progress and showing their love and concern for her.  I am blessed beyond words.  Please know that I read and appreciate every fb message, blog comment, email and text. They help me through the day.  I wish I could respond to every single one and let you know how thankful I am.  I am unable to do that now with all that I have going on. Just want you all to know I don't take any of you for granted.  

Much love and gratitude,

Amy, Joel, and Lydia