Swim meets, Mary, and Me

When it comes to endurance... um well... sprints are really more my thing. In high school I was MVP of my JV swim team because of my 50 yd freestyle sprint. I loved that sprint. I loved standing on the starting block, every hair on end, waiting for the start signal. It was all out - no time to take more than one breath. I was pretty decent at the 100 yd free too. The 500 - not so much. I teared up the first time my coach said I had to do it at a meet. I liked winning and I was not going to win that race unless every other swimmer in the race developed debilitating leg cramps. I couldn't figure out how to pace myself and not go all out at the beginning. That race did not showcase my strength.  

That's similar to how these last 6 months have felt. I thought I had moved through the stages of grief (denial, anger, bargaining, depression, acceptance) rather nicely. I sprinted to the "acceptance" box and had no intentions of moving. Then came the visit to the urologist, the start of our new cath routine, starting on medication. The dominoes began to fall - there were the urinary tract infections, more doctors and more meds. I began to have to live a little more day to day. I started to fully grasp that the cathing, the meds, the multiple doctor appointments - were not things I could just sprint through in the short term. THIS IS OUR LIFE WITH LYDIA! There is no foreseeable end to all this - until Lydia can manage her own care. (and PS - I don't think that Lydia taking over will really relieve this mama's heart too much). This realization sent me on a trip to the weird Bermuda triangle of anger, bargaining, and depression. Seriously. I feel like I've disappeared into this triangle. Round and round I go. Sometimes I visit all three spots in a day. I'm not happy about being here. I'm surprised at being here after I thought I was doing so well. I'm not proud to tell the world I'm still hanging out in this triangle. And yet here I am and it's wearing on me.

In one of my "bargaining" moments I told God something like this, "Couldn't you have given me something else to deal with? The long term stuff is not something I excel at! I would rather have had Lydia be born with something else - where we had to stay in the NICU longer and didn't know what her outcome would be. But we would pray really hard and talk about our faith in You. Lydia would be healed completely and we'd give You all the glory." Translation - I get what I want (Lydia is healed from all physical disabilities) and I cease to have something in my life that continually reminds me of my need for God. I could be self-sufficient and to the world it could look like I had won. 

Then there is the loneliness. I think that being a stay at home mom can be lonely at times. I think having a child with special needs that you are still trying to figure out how to deal with - both practically and emotionally is even more lonely. I don't know how much to share or not share about what is going on. I don't want to be too needy, too emotional, or too anything. It's hard to share what is causing me anxiety when I don't want to seem ungrateful for all that is going so well. It's not easy to confess that when people are talking about potty training, kids going off to school, or summer camp, I immediately start beating back the "how is that going to look for Lydia" thoughts. I don't want to complain about how inconvenient it is to plan life in 4 hour increments (due to the cathing schedule) since of course I would do anything for my child. For the last six months I feel like I've only been half present at anything. Half of me is always trying to get my feelings about Lydia's sweet life in line. It's exhausting! I know it is my own fault for not engaging those around me more fully, but quite frankly I often don't have the emotional energy for it. And knowing it is your own fault doesn't make the loneliness any less palpable. 

As I've been reflecting on the Christmas story of the birth of Jesus, I've been thinking a lot about Mary. I am in NO WAY comparing my situation to hers. For starters, I can assure you Lydia was not the result of a virgin birth. :) But I do wonder if Mary didn't have some similar feelings to me. It says in Luke 1:38 that after Mary heard about God's plan for her to become pregnant though a virgin, and bring the Savior into the world, he response was, " I am the Lord's servant. May everything you have said about me come true." Wow! If you understand the gravity of the situation she was about to find herself in, due to the culture and belief system of that time, then you know that her response is astounding. That is a response I would love to have. But after some hard days, I wonder if Mary ever wished this was not her path. I wonder if she ever felt like telling God she could have done much better in a different situation. Were there any other parts of His plan available? Maybe she could be considered for something else? I wonder if she felt lonely. I'm sure as she stood waiting for her turn to draw water from the well it didn't matter that she was surrounded by women. There probably weren't many women in her village she felt she could discuss her special pregnancy with. There wasn't any other woman who had been in Mary's position and could empathize or understand all that was going on in her heart. Mary didn't know exactly what her child's future would look like, but I think she knew there were parts that were going to be painful for her. She probably also had to learn to live in the moment with her child lest any anxiety about the future steal the joy of the present.  

And what about Lydia??? She continues to be a bright and happy little girl. To look at her you would never know anything is wrong. Several people have commented that it is almost as if she didn't have spina bifida. Well I can tell you I'm reminded that she does indeed have spina bifida several times a day. We had a brief window where cathing was going really well. And then Lydia decided she doesn't have much patience for the whole routine. Since she is not at an age where she can be reasoned with or told to hold still, it makes for some interesting situations. A tiny tube that is supposed to make its way into a tiny hole on a very wiggly baby trying to roll over and crawl away from me - oh and you are supposed to keep that tube sterile. I'll let you imagine how that is going. I have definitely been doused with pee on more than one occasion. The good news is that we ended the summer free of urinary tract infections and she hasn't had one since. In January we will have a test done to evaluate her bladder pressure and have another ultrasound of her kidneys. 

In addition to her bladder issues we now have poop issues. The last part of her GI tract does not have great - or any - muscle tone. This means that unless her stool is very soft her body can't get it to the exit point.  When Lydia can't poop for several days her poor little tummy looks very distended. We are doing things to combat this. The problem is that all of a sudden her system cleans out and we are changing her diaper 4 times in a hour - or worse she is standing in the tub with watery poop running out of her. Not fun for any involved. We are seeing a gastrointestinal MD and praying we can find a way to get Lydia to a happy medium between these two scenarios. 

There is one other thing we found out this fall that is a prayer point as well. Lydia had a MRI of her brain and spine done in October. The fabulous news is that brain looks normal. The not so fabulous news is that there is a sac of fluid at the base of her spinal cord. The doctor thinks it is slow growing, but it will have to be taken care of at some point. The doctor is hoping to wait until Lydia is older so he can take care of the fluid sac at the same time he takes care of her tethered spinal cord. We will do another MRI in April to see if this sac is growing. Please pray that this fluid sac does not grow. 

Despite all that is hard - Lydia is an absolute JOY. We thank God every day that we get to have this little wonder in our lives. I wish I could bring her around to each and every one your houses to hang out for a while because I think she's kind of a big deal! I mean look at her!

Reality

Hello friends!  I know it's been a while since there's been an update.  Mostly it's because we've been doing well... and playing!  In the last 2 months we've been fortunate to spend some time with my family in California and visit some dear friends in Florida.  Both coasts before 4 months old - not bad for a future world traveler.  She must have some of her grandpa's travel genes because she's already an expert. There were very few tears over the hours and hours of travel - much to the relief of all those seated in our vicinity. After all the unknowns surrounding her birth, surgery, and managing multiple MD appointments for the first 2 months of her life we have just really enjoyed the last 2 months. We haven't had to worry about anything and its felt like we have a "normal" baby.  Miss Lydia started sleeping through the night, started smiling at people - especially if they tell her she's pretty, and she'll talk to anyone she thinks is listening - usually the baby in the mirror. There is no shortage of compliments for this beautiful girl when we are out and about! Life just started to feel carefree again and I almost forgot about spina bifida...

Well our vacation from reality ended last week.  We went to the urologist last week and they did a test to measure the pressure in Lydia's bladder. Unfortunately her bladder pressure is high and her bladder is almost never relaxed as it should be. This makes the kidneys unable to drain into the bladder properly and if left untreated can cause kidney damage.  Her bladder also holds very high volumes which may cause urine to back flow into the kidneys and cause damage. On top of this, her bladder doesn't empty completely making her prone to infections from urinary retention. Not good!  Since the test results were not favorable the urologist wanted to go over our treatment options right away which meant she ended up squeezing us in between surgical procedures. She proceeded to give me the bad news and then rattle off our treatment options in less than 2 minutes and then wanted to know if I felt strongly for or against any of those options. Hmm.  What do I feel strongly about???  I'm against having to do anything to my baby that is going to make her uncomfortable. I'm against my child having irreversible kidney damage before she's a year old - or ever. I'm for telling you to go jump in a lake for seeming so nonchalant about me having to pick one of these options. Since I couldn't say any of that without sounding like a crazy person I was standing there trying to process all that she told me while bouncing my fussy baby, keeping her pacifier in, and praying I make the right decision for my child. I'm so thankful I have the medical knowledge that I do from being a RN, but it still isn't easy - especially when it's taking all your resolve not to end up in a puddle on the floor. For now we are going to treat Lydia with oxybutin - a medicine that will help relax her bladder. While this medicine is doing its job of relaxing her bladder to protect her kidneys it may relax her bladder so much that she never urinates without using a catheter to drain her bladder. So we also started her on a cathing routine. I did not leave that appointment in the highest of spirits. I know that life always looks brighter when you are thankful, so on our drive home I told Lydia all the things I was thankful for; from the sun shining to the fact that we have medicine to give her.

As we started our new routine in that week before Mother's Day, I embarked on a roller coaster of emotions familiar to most moms. Guilt, worry, fear, anger, frustration - all enveloped in one big heartbroken mess. It was all I could do not to bawl as Joel held her legs and I cathed her for the first time.  She did great and I'm thankful I know how to do this. That doesn't make it any easier to accept the fact that this isn't just something we have to do for a week or a month.  This is her life now... for years to come. Its hard not to let your mind run ahead and worry about how all this could affect in her future. Then to make matters worse, Lydia got a urinary tract infection. Talk about a tidal wave of guilt. I was absolutely miserable over being responsible for adding to my sweet baby's discomfort. This then led to an extremely frustrating day of trying to obtain antibiotics for her from very unhelpful people. It seriously took a full 12 hours from the time I started making phone calls until I had antibiotics in my hand. Suffice it to say none of us were having a great week. Then add in the side effects from her new medication: urinary retention, constipation, overheating, and severe dry mouth. All of these have me wondering if we are doing the right treatment for her, but I'm afraid of what will happen to her kidneys if we don't use this medication. My heartache over my beautiful baby made my chest physically hurt.

By the time dawn was breaking on my first Mother's day I was a mess! I was up with Lydia at 3:30 am as she was distressed over her dry mouth. She loves to suck her thumb, but that doesn't work so well with a dry mouth. Watching her frantically going back and forth between her two thumbs and howling when she couldn't soothe herself just made me so sad. After 3 hours of continually wetting her mouth with a syringe and trying to get her to suck on a wet wash cloth she finally fell asleep on my chest. Then in the midst of my sadness I was just really angry. Angry that Lydia had to deal with this. Angry that I had to cath her in an hour. Angry that she had this blasted spina bifida. I felt like my soul was limping along as we walked into church a few hours later. I also felt like I was a pressure cooker of emotions and could explode at any moment.  Soooo I snapped at my husband. Then as I tried to get out the words to say I was mad at him for this and that I fought back all the hot tears threatening to pour out. I knew that I wasn't really mad at him. I was mad at spina bifida for the way it was affecting all of our lives... and mad at myself for not handling it better.  It became apparent that I was not going to make it into the service. I asked Joel for the keys but he held onto my hand and suggested we go on a walk together. He must have read my mind - which at that moment was making plans to get in the car and drive somewhere where all this did not exist. Joel was a wise man and held onto me! And now we are "Those Parents"... The ones who left our child in the nursery while we went for a walk and then sneaked back in before the end of the service. Sorry Pastor Kerry, it was a "desperate times" kind of moment.

As I have been climbing out of the pit that has been this last week, there are two thoughts that have been comforting.  First of all my daily devotional (Jesus Calling by Sarah Young - it's a good one people) was derived from John 16:33, which states, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." God wants me to remember that He has the final chapter written. This world and whatever hardships we experience in it won't last forever. That is so good to know! Secondly, there is a Chris Tomlin song with the chorus, "I know who goes before me, I know who stands behind. The God of angel armies is always by my side."  Now how can I possibly walk in despair with that nugget of truth to rest upon? The God of the universe - who has every angel at His command - still takes the time to surround me, Joel, and our Lydia - and walk with us through whatever the day holds.

Urologist Appointment

I can tell that people were praying for our appointment with the urologist yesterday. Lydia has had a cold and was fussy all day. Yet she was PERFECT for the whole appointment- happy and charming the nurses and techs. Lydia had another ultrasound of her bladder and kidneys. Her first scan when we were still in the hospital showed that her kidneys were small and her bladder was very large. Her ultrasound yesterday showed that her kidneys have caught up and are now an appropriate size. We are thrilled with this news. Thank you for praying. God is at work and He is good!  

We still don't know what type of issues she'll have with her bladder yet. The urologist is having us wait until May to do a test that will measure the pressure in her bladder. Too much pressure in her bladder would cause urine to back up into her kidneys. However if her bladder can't handle too much pressure then she would be leaking urine.  I don't really want her to deal with either issue! But I can't worry about things we don't know yet. So for now I will be happy with our good news, enjoy my precious daughter, and refuse to worry about the future.  God will help us be ready for whatever we have to deal with when the time comes.  Now is not that time!

Bath Time!

Lydia's Progress

My mom is telling me that I need to write something because lots of people are asking about Lydia!  I never cease to be amazed, and incredibly humbled, at how many people care about out sweet girl. Lydia LOVES to be held, so finding time to write is tricky.  Also, I seem to be having trouble putting coherent thoughts together so don't expect too much from this update! No deep thoughts today!

Last week we went to see the neurosurgeon to have a head ultrasound. The neurosurgeon showed me all three of the head ultrasounds that Lydia has had.  The ventricles in her brain (where they are watching for extra fluid to accumulate) have increased in size a little bit. However the MD feels that it's only a slight increase and probably just her body trying to adjust to a new way of dealing with her cerebral spinal fluid or CSF. Due to her spinal defect her body leaked spinal fluid out the hole in her back prior to surgery.  Surgery, although necessary, disrupted her body's way of dealing with the CSF which is why they are concerned her head may swell. The neurosurgeon was happy enough with how things were looking that we don't have to have another head ultrasound until the end of March. He was also very impressed with Lydia's movement in her extremities and her response to sensation in her feet. We were freed from our 60 minute time limit in the car seat and she doesn't have to sit on the foam donut anymore.  The MD said her surgical scar is looking great and we are no longer doing dressings which is a huge relief.  God is so good and we are so thankful for a good report.

Now we see the urologist this Wednesday and Lydia has to have scans of her kidneys and bladder again. This is the area where I am seeing some problems with little Lydia.  If you could please be praying for a good report on Wednesday, that I would be able to ask the right questions, and that we would have a clearer picture of how to help Lydia.

Thank you again for your care, concern, prayers, and notes of encouragement.  We are so grateful for every one of you!

What are you looking at?

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