Preliminary Results and Seizures

We are waiting for the official report from the doctor, but the good news is that it looks like Waverly does not have kidney reflux.  There were a few other things of concern, some sediment in her bladder and urinary retention (she didn't fully empty her bladder once she did urinate).  I'm not sure what the plan is about those, so I will wait to see what the doctor wants to do. 

In the meantime, she had another big seizure last night.  It happened right after I fell asleep.  Nothing like being woken up to an alarm and running into your baby's room to see her blue.  I hate that and it happens too often.  I have emailed the neurologist to see if we need to increase her medication since it's been happening more frequently.  I'm pretty sure she was just exhausted from her day yesterday, even though she slept most of the afternoon and evening.  But those seizures are breaking through much too often, and she had a harder time coming out of it this time (as in, her sats were slower to come back up to normal and I was wondering if I needed to call 911 to get them on their way). 

Please pray that we can get these seizures under control.  Thanks!

Results and more testing

Just a quick update that we did get final results from Waverly's last test, and the good news is that she does not have the one neurological "pooping condition" that they were looking for (do you like those technical terms?). She just has slow motility, which basically means she will continue to need intervention to help her have a bowel movement. We are currently giving her milk of magnesia twice a day and she is to get an enema if she hasn't gone in 24 hours. Yes, lovely...

We are currently in the waiting area right now for her VCUG to assess her kidneys and bladder. This is since she's had a couple of UTIs. Sometimes kids with her condition have kidney reflux, so this will check for that.

Of course, once we got here at 6:45 this morning for her 7a.m. appointment, they told me that she's actually not scheduled till 8:00. What?!? All the info has 7:00 written on it and when we called and preregistered yesterday, they said 7:00 too. They are trying to go ahead and get us in soon but that's certainly frustrating. I'm not an early morning person...!

Waiting on Results

Well, we spent the morning on Thursday at the hospital for Waverly's contrast enema.  We were there for 4 hours...what a long day!  We had to wait over an hour before they even took us back.  Ugh!  But we enjoyed some nice snuggle time in the waiting room.  They filled her belly with water soluble contrast solution and x-rayed the process.  It was kind of cool to see her fill up (like seeing science class in action!).  The doctor saw some stool blockages in there.  He said the solution should help to soften and pass the stool.  We then waited for over an hour for her to poop.  Her stomach was huge and hard, and I felt so bad for her because I know it was so uncomfortable.  She finally started going, and going, and going.  They then took another x-ray, and we were allowed to go.  (She rode home on towels in her carseat!)  She's been a pooping machine since then, and her poor bottom is now raw.   :(  I haven't heard the official report from the doctor yet though so I'm not sure what all the findings were, and especially what they mean as far as treatment, etc. 

Waverly has also been sneezing and coughing a lot.  Our whole family has, actually.  We haven't felt terrible, but just have the annoying snot hanging around, I think possibly from allergies.  But of course, with Waverly, things can develop into more, so we are trying to be aggressive with breathing treatments, saline in her nose, chest PT, humidifier, suctioning, etc. to try to keep her clear.  Any prayers for her diaper rash and congestion are appreciated!  I will update when we hear about the test results. 

Test Tomorrow

Just a quick update.  Waverly went to the doctor last week on Friday for a follow up from her UTI, and she checked out all clear from that.  She is now on a prophylactic dose of antibiotic until we can get kidney and bladder function testing done (ultrasound and VCUG) at the end of the month.

At that appointment, I asked the doctor what we can do about her very distended belly.  He sent her that afternoon to get an x-ray of her stomach/abdominal area, and from the results of that, decided she should have a contrast enema done.  That will be tomorrow morning. 

In the meantime, my oldest woke up in the middle of the night with an ear ache and is running a temperature, and my throat is feeling rather scratchy.  Not a big deal in and of themselves, but we'd appreciate prayers!  Thanks, as always! 

Heart Thoughts-"I don't want it to be real...!"

We had just received Waverly's Lissencephaly diagnosis the day before.  I'd had approximately ten minutes that night to research on the internet, and it was scary.  I was in shock.  We knew before she even arrived that she may have some health issues or special needs, but we never expected it to be this serious. 

That afternoon, as I was in the NICU with her, the pediatric neurologist came up to see her and talk with me.  I listened to his explanations, and then he asked if I had any questions.  There was one thing from the day before that was not mentioned in the conference room meeting, but I had read online that night.  But I couldn't speak it.  I took a few long, deep breaths and finally got up the courage to ask the Big Question.  I could only manage a whisper...

"Life expectancy?"

"Realistically, only through early childhood," was his response. 

I looked over at my sweet, tiny baby, sleeping so soundly, so perfectly beautiful, and I couldn't believe it.  He left, and I just stared at her, touching her softly with my hand.  She was three days old, and I was just told our time with her was short. 

I had to be discharged from the hospital that day.  It was about time for me to leave, so I had to go back down to my room and gather my things.  I left her on the 14th floor and somehow made it back to the 12th floor, back to my room, started to fiddle a bit with a few of my things, and then I melted. 

"I don't want it to be real.  God, please, don't let it be real!"

I wept. 

I could deal with a child with special needs, the extra care, the extra work, all that comes with that.  Yes, it'd be hard at times, but all kids take work.  But to have to think about losing her and not having much time with her was more than I could take. 

"I just don't want it to be real."

But, every morning since then, I wake up, and it's still real.  And God's grace greets us each morning in a new and fresh way. 

One of my favorite verses since college has been Lamentations 3:22-23.  We praise God for His mercy and love. 

"The steadfast love of the Lord never ceases; 

his mercies never come to an end; 

they are new every morning; 

great is your faithfulness."

Heart Thoughts-One Hour Conference Room Meeting

"We need to meet in the conference room, and plan on about an hour," the doctor said.  Immediately, my heart sank.  You don't need a one-hour private meeting for good news.  What were they going to tell us about our two-day-old baby?  I grabbed my notebook, kissed my baby in the NICU, and hand-in-hand with my husband walked down the hall to a room filled with teaching material, long tables, and cold chairs.  The neonatologist, pediatric neurosurgeon, and head NICU nurse all walked in with somber faces. 

We sat wide-eyed as they explained her diagnosis:  Lissencephaly.  I feverishly took notes: about nerve migration disorders that caused her brain not to fully form, about cognitive and motor delays, about cerebral palsy and severe mental retardation and seizures (I even misspelled the word as "seisures").  I wrote the questions as they explained the various reasons why it may have happened.  There were some tears as what they were saying was processed in my head.  But I held back so I could ask questions, learn, educate myself.

And then they left, told us to take our time, and we were alone.  In that big room with so many tables and stuff piled against the wall.  With a tiny tissue box that they had to go out to get from another room.  With the notebook and notes sitting open in front of us, staring at us in black and white, information scrawled about my baby.   My baby. 

We looked at each other and the tears flowed. 

"He's good.  He's good.  He.is.good."

I had to repeat it over and over.  We knew it was true.  He was good.  He is good.  He's good.  In that moment, a moment that no parents ever should experience, that's all we could say.  There was nothing more to say. 

That day our hearts broke like never before.  That was one year ago today.  My mother's heart has been crushed for a year. 

And yet, we can say still a year later, He is good. 

ONE YEAR OLD!!!

Our sweet girl is ONE!  I just can't believe it.  What an amazing year this has been.  We are so very blessed by her.  

She started off the day by waking up a bit early for her with quite the diaper!  I had planned on giving her a nice long bath, so we went ahead and did that first thing for the morning.  She enjoys being in the water, especially when I pick her up off of her bath chair and hold her in the water to float around. 

After bathtime she enjoyed being pampered with lotion and massage. 

 Then she got dressed up in a pretty dress. 

 All that wore her out!  She fell fast asleep, and enjoyed some snuggle time with mama. 

As a special treat, we gave her breastmilk all day through her g-tube instead of the normal formula during the day/breastmilk at night combo.

She then got a visit from her Auntie KK, who brought her a balloon.  She really enjoyed looking at it and talking to it!  

 This is her talkative face.  Can you tell she's trying to communicate?

Then after dinner we had our family celebration.  She opened gifts with help from big sister and big brother.  

 Then she got a cupcake!

 She couldn't figure out how to blow out the candles, so brother and sister helped her.  

 She really enjoyed tasting the icing, and got a taste of ice cream as well.  She approved of both! 

 She also got some snuggles from Granddaddy. 

At the end of the day, she got to be rocked to sleep again by her mama (me!). 

Some fun facts about Waverly at one year old:
-She weighs 18lbs 13oz, which is about the 17th percentile for her age.
-She is 28 inches tall, which is the 18th percentile.  That puts her in the 50th percentile for weight-for-height (down from the 90th+ a while back!).  So she's thinned out a bit!
-Her head circumference is 17.3 inches (21st percentile). 
-Some of her favorite things are snuggling (she LOVES to be held!), her family and siblings and friends, faces, music, lights, tv, having her head rubbed, tastes of sweet things, and bath time.
-Some things she doesn't like are loud noises, having her feet tickled, seizures, cold things touching her, and her nasal cannula (for her oxygen).
-Even though she seems to have thinned out some, she still has awesome arm and leg rolls, and the biggest sticky-outy tummy! 
-She is still on oxygen, although she's able to go without it some during the day when she's awake.  When she's sleeping, she needs it though.
-We like to dress her in dresses or baby doll shirts.  Otherwise, her tummy sticks out of any other kind of shirt we try. 
-Her arms and legs are short, so we often have to roll up long sleeves or pant legs because we have to get a large enough size to fit over her belly! 
-She is very smiley in the mornings especially, and will still coo responsively to people when she's in her talkative mood. 

Waverly, wow, what a year!  We are so very thankful for the Lord's blessing that you are in our lives, and in so many others' lives.  We love you so very much.  Soon after you were born, and we started receiving your various diagnoses, your daddy brought us to this verse in John: "Jesus answered, 'It was not that this man sinned, or his parents, but that the works of God might be displayed in him.'" (John 9:3).  We have prayed since before you were born that God would be glorified in your life, and we truly believe that today, a year later, He has been.  We pray that He will continue to receive the glory, for all He's done and for all He's created in you.  We praise Him for your beautiful life, and are thankful for this wonderful year that He's given us with you. 

Helping in Crisis

I had a friend email me and another friend a couple of months ago.  She had a friend who was about to deliver a baby with major health concerns.  She emailed us because we both had recently had babies with on-going health concerns and major issues as well, and she knew we could give some practical info on how to help her friend.

Well, this friend just a few days ago unexpectedly delivered her own baby 2 months early due to pre-eclampsia.  Isn't our God so interesting?   I have been meaning to write a blog about this topic for some time, but wanted to do so now so that I could offer it as help for her (from a distance), and for anyone else who knows someone going through a crisis.  Some of the info is specific to our situations (young mothers with children and babies with special needs), but much of it can be applied to anyone in a type of crisis situation.  In no way is this list exhaustive, so if you know of any other ideas, please comment and share.  In no particular order, here we go!  (Much of this is copied and pasted from the original email communication between us three women.)

-Don't ask, just help.  One of the most overwhelming things is to have so many people tell you to just let them know what they can do.  We feel like we are already asking so much and relying so much on others.  Just pick something to do (maybe from this list!) and do it.

-Have one person be the contact person for the family.  The family can communicate needs to that person, and those wishing to help can contact that person instead of the family receiving calls all the time.  Especially when baby is in hospital and they are needing to make calls for baby's care, at the hospital a lot, and trying to spend time with older children at home, it's hard to have a lot of time to spend answering phone calls from people just checking in and returning phone calls.  

-Send gift cards (gas, grocery, local restaurants).  The family can keep them and use when needed, and not feel bad about spending money to eat out again for instance, or arranging to get a meal delivered, etc.

-Send money.  This is hard for me to write, but it was so helpful to receive.  It's a hard time, and lots of extra money is being spent on random things like food, snacks, gas, etc.  I am a big couponer, but I didn't have time to do that, so that was more money spent.  Usually one or both parents are missing more work than usual, etc.  Generous donations made a huge difference.

-Set up meals.  Make sure they are healthy (sometimes too many rich, creamy, delicious meals can be, well, too much, and a simple salad is a nice welcome change!).  Just make sure to communicate with the family so they aren't receiving too much food at once.  That can be overwhelming.

-Make freezer meals to store for later.  (Again, check on need and space, though.)

-Make up a bag for mom to have at the hospital.  Reading material (preferably "light" material, not heavy, emotional books), notebook and pen, snacks (granola bars, individually packaged things, water bottles) that are labeled with name (for fridge at hospital, if available), small lotion/hand sanitizers, etc.

-Send notes of encouragement and prayer.

-Help with older children.  Consistent people are great.  Fun activities are good, but sometimes just a nice quiet time of play is nice too.  Too much stimulation and change for the older kids, who are already going through a lot, can be too much for them.  For example, if the same person is available the same day of each week, make it a standing thing to care for the kids on that day every week, as needed.

-Get a list of regularly consumed things in the home (such as typical snacks that the kids eat, etc.) and bring them over.  Also paper products (all households go through paper towels and toilet paper!), laundry detergent, dish soap, trash bags.  Just drop them off to the family (on the porch, or some other place).

-Diaper and wipes.  Always useful!  Also can get for the older kids if they are still in diapers.

-When you bring a meal, pick up a load or two of laundry, then wash and bring back folded the next day.

-Pay for a house keeper.  There's not much time in the midst of the sudden craziness to be cleaning, so pay for someone to come do it once a week (or volunteer to be that person if the family would prefer someone they know).

-Also make sure yard work is taken care of.  Don't just stop at mowing the grass, but make sure the weed eating is done, bushes are trimmed, weeds are pulled, mulch is in beds, maybe even plant some flowers if needed and appropriate.  

-Come over and do other random chores over and beyond regular cleaning.  Someone came and washed my blinds shortly after Waverly was born, and that meant a lot to me.  It's certainly something I would not have had time to do for quite some time (and honestly, they haven't been washed since then!).

Also, be careful about what is said.  Often, in times of crisis, people just want to help and offer encouragement, support, and comfort.  But sometimes hurtful things are said unintentionally (and I know I have done it too!).

-Tell the family congrats on the new baby and how beautiful he/she is.

-Little words of encouragement are nice, but cliche sayings can be hard to hear ("God doesn't give you more than you can handle." "God gave you this because you are such a great person.").

-Don't ask lots of questions about the future, because it's just so unknown.  Especially about the future of the family ("So, do you think you're done having kids?").  It's an emotional time, and that's not a great time to bring up stuff like that.

-Don't question why something happened or decisions that were already made (medical or otherwise).  Don't try to sympathize by saying you know what they're going through, because every.single.situation is different (which is why some of this advice may not even be appropriate or helpful in all situations). 

I hope that this can be helpful to those who are in a crisis situation, or to those who are wanting to help those in such situations.  We are so very thankful for those who have done all of these things for us, and more.  We have truly been blessed by the love and support of so many, and hope to pass this along so that others may be blessed as well. 

Another UTI

We got the results back a couple of days ago, and Waverly does have another UTI.  It's a different strain of bacteria than the last time, but she's on the same antibiotic since it will treat what she's got.  Once she finishes this course of antibiotics, then we'll do an ultrasound of her kidneys to check for kidney reflux and a VCUG which is a test that checks bladder functioning.  Children with her condition can often have issues with their kidneys and/or bladder.  This pic was of her today at the GI doctor.  We went to get her stomach checked out since it's been very distended.  He determined she is very full of gas in her intestines so we are going to start giving her simethicone (anti-gas, or Mylicon) 4 times a day with her feeds, as well as increase her Milk of Magnesia (to help her go to the bathroom more regularly).  We are also going to switch her to a new food since she's about a year old, so we'll see how that goes.  It's a liquid formula that's basically blended food, made from real food, so I'm excited about that.  I still have to do some figuring of calories, etc. as I also want to keep giving her breastmilk as we are given it.  Once we get the kidney/bladder testing done, I'll let you know what the next steps are.  Add on another specialist to the list...!