January 28, 2011

We saw Evie’s ENT last week to check on her ears and they are finally looking clear! We’re hoping this set of tubes last longer than the first set, but we fully expect to do the procedure at least once more this year because of Evie’s rapid scar tissue growth.

Because the fluid was finally out of her ears, we tried another hearing test. Unfortunately, the standard hearing test requires more quiet than Evie’s loud breathing could give us, so we’ll need to do a different type of test called a BAER or ABR test. We are still trying to get that scheduled, but there is really no rush. We know from observation that she can hear, it’s just a matter of how much.

Because of the scarring in her trachea, the ENT doesn’t feel comfortable trying out a speaking valve until she’s at least a year old. The speaking valve would allow Evie to breathe in through the trach, but then force her to breathe out through her mouth, allowing the air to pass by the vocal chords. He wants to give her the chance to grow more so she can hopefully get air around the scarring. We will hopefully be starting sign language with her soon so that she can communicate with us. We did sign language with our first daughter and she loved it! I’m looking forward to doing it again.

I have had some people ask me how eating is going for Evie and the the truth is, I haven’t updated on here because there really is nothing to update. She is still very uninterested in food and when she does actually get some food in her mouth, she doesn’t swallow it. Our first wasn’t very interested in solids until over a year, so we don’t feel rushed to push eating with Evie. Better to go slowly at her own pace, than to push too hard and worsen her oral aversions. We plan on keeping the gtube until after the majority of her surgeries are dome, so of she doesn’t eat until she’s 2 or 3, it’s perfectly fine.

Evie is on the brink of crawling! It could be any day now or it could be weeks from now. She scoots and rolls to get to things she wants and loves to be in the middle of things, especially the middle of things Big Sister is playing with! She likes to climb under and over things as best she can and enjoys walking while we hold onto her.

On Monday we will be seeing another cardiologist to get a second opinion on Evie’s heart. Please pray that if everything really is fine, that we will be able to accept his opinion, and finally relax and move on, but if there are problems, that 1) we will find them quickly, 2) they will not be serious, and 3) they will be correctable.

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January 6, 2011

We had been noticing some irregular hear rhythms with Evie, so we had the cardiologist put her on a heart monitor to record everything for 24 hours. We spoke to the cardiologist about the results of her heart monitoring. He said she has a “wide variability in her heart rhythm.” His opinion is that this is perfectly normal, but because of the highly unusual electrical direction in her heart, her medical history, and her 60-70% chance of heart problems related to CHARGE, we’ve decided to pursue a second opinion. We will be seeing a cardiologist in Iowa City who specializes in electrophysiology (the electrical activities of the heart) at the beginning of February. If she were a typical child who did not have numerous surgeries in the years ahead, we would take the good news and run, but we want to know as much of her story as possible before we stress her body again with surgeries.

In amazing news, Evie has started scooting! Not very well, mind you, but she is extremely determined! When we brought her home from the hospital and I looked ahead to Christmas and the New Year, I remember thinking “I hope she can hold her head up more by then” and here she is on the verge of crawling! I’m stunned and so excited for her.

Thank you all for your prayers, encouragement, and especially your acceptance of our beautiful little girl.

July to December 2011

  • Tuesday, July 5, 2011 5:23 PM, CDT
              SHE’S HOME!!!!!
  • Thursday, July 14, 2011 12:08 PM, CDT
    After being with us on and off for over 9 weeks, my mom finally took off to go home. We could NEVER have done this without her!
  • Saturday, July 23, 2011 4:43 PM, CDT

    “Why go I mourning?”

    Psalm 42:9Canst thou answer this, believer? Canst thou find any reason why thou art so often mourning instead of rejoicing? Why yield to gloomy anticipations? Who told thee that the night would never end in day? Who told thee that the sea of circumstances would ebb out till there should be nothing left but long leagues of the mud of horrible poverty? Who told thee that the winter of thy discontent would proceed from frost to frost, from snow, and ice, and hail, to deeper snow, and yet more heavy tempest of despair? Knowest thou not that day follows night, that flood comes after ebb, that spring and summer succeed winter? Hope thou then! Hope thou ever! For God fails thee not. Dost thou not know that thy God loves thee in the midst of all this? Mountains, when in darkness hidden, are as real as in day, and God’s love is as true to thee now as it was in thy brightest moments. No father chastens always: thy Lord hates the rod as much as thou dost; he only cares to use it for that reason which should make thee willing to receive it, namely, that it works thy lasting good. Thou shalt yet climb Jacob’s ladder with the angels, and behold him who sits at the top of it—thy covenant God. Thou shalt yet, amidst the splendours of eternity, forget the trials of time, or only remember them to bless the God who led thee through them, and wrought thy lasting good by them. Come, sing in the midst of tribulation. Rejoice even while passing through the furnace. Make the wilderness to blossom like the rose! Cause the desert to ring with thine exulting joys, for these light afflictions will soon be over, and then “forever with the Lord,” thy bliss shall never wane.

    “Faint not nor fear, his arms are near,

    He changeth not, and thou art dear;

    Only believe and thou shalt see,

    That Christ is all in all to thee.”

  • Saturday, July 23, 2011 5:44 PM, CDT
    We got our first smiles today…she seems to finally feel at home.
  • Monday, July 25, 2011 10:09 AM, CDT
    Nothing like a 2am trip to Blank ER because your daughter pulled her g-tube out, then the doctor puts a new one in, has it x-rayed to make sure it’s in the right spot, you get the okay to feed her, then realize the g-tube they put in was way too big even though that’s the one that home health care sent as your replacement, so you have to have a smaller one put in before you can go home. *sigh* exhausted.
  • Tuesday, August 2, 2011 7:10 PM, CDT
    Unfortunately, Evie is sick. We’ll be keeping a very close eye on her over the next few days. Please be praying that she can fight it off quickly and this will not send her back to the hospital.
  • Thursday, August 4, 2011 1:59 PM, CDT
    Evie is still sick, but doesn’t appear to be getting any worse. We’re just hoping to keep dehydration at bay.
  • Saturday, August 6, 2011 11:23 AM, CDT
    Evie seems to be on the mend. This nasty flu took a toll on her weight gain, but other than that I think she did very well. Now if only we could convince her to nap so she would start gaining weight again!
  • Monday, August 8, 2011 3:03 PM, CDT
    Little (and I do mean little) Evie is 3 months old today and has been home for just over a month. Not sure where the time went. Wishing things had gone differently, but trusting they’ll get better in time.
  • Tuesday, August 9, 2011 7:41 PM, CDT
    We had a very very long day of appointments in Des Moines today and are very glad to be home. Good news of the day: Evie’s heart is doing really well and she’s doing some great things developmentally considering her traumatic start.
  • Sunday, August 14, 2011 8:50 PM, CDT
    Today when Evie was crying, Aleyna snuggled up next to her, stroked her hair, and lovingly cooed, “I know, Evie. I know,” over and over. So cute, but scary how much she picks up on!
  • Monday, August 22, 2011 7:46 PM, CDT
    Just had my first emergency trach change. Evie was smiling again in minutes, but her mama is still shaking. Evie’s trach straps were just a bit loose apparently and she somehow managed to pull or cough it out. As scary as it was (and oh was it scary!) it eases my mind a bit to know I’m capable of handling it. Hopefully it’s a long time before it happens again though!
  • Wednesday, August 24, 2011 8:11 PM, CDT
    Evie has officially gained three pounds! Hopefully as she continues to heal from the flu, she’ll start gaining weight better. She also had her gtube replaced again as hers was defective. That makes 4 gtube changes in 2 months (the norm is once every 3 months)! Poor little girl just can’t catch a break!
  • Saturday, September 3, 2011 6:05 AM, CDT
    Evie seems to be back to her old self (though still fussy from the teething). Yesterday morning she somehow managed to pull her gtube button out of her stomach, but not out of her skin. Got in to see the pediatric surgeon on call, and it was determined that the button was too small, so it got swapped out for the next biggest size. She started acting better quickly, but her poor tummy is still pretty tender. Just glad we got it dealt with before the long weekend.
  • Wednesday, September 7, 2011 5:31 AM, CDT
    Just realized that one year ago this past weekend was when we found out we were expecting again. Little Evie is certainly not what we expected, but God knew she was just right for our family. Wish she didn’t have so many struggles, but certainly wouldn’t trade her for any healthy baby! Love my little girl.
  • Friday, September 9, 2011 4:58 PM, CDT
    We finally got some answers! Evie’s feeding tube was actually too big, so the balloon inside her stomach was blocking off her intestines and sometimes going completely into her intestines. So all her food was bypassing her stomach and no acid or gas could escape which caused her too be constantly vomiting. Poor little thing. Hopefully she heals up quickly and finally starts growing!
  • Saturday, September 10, 2011 8:39 PM, CDT
    So what number are we at now? #6? well, looks like we need #7. sigh. will have to head in tomorrow to get a smaller gtube. Just glad we know what the problem is.
  • Sunday, September 11, 2011 5:33 PM, CDT
    0.8, 1.7, 1.2, 1.2, 1.5, 1.0, 0.8. Evie’s gtube sizes in the last 8 weeks. Hoping this is the last one for awhile.
    Here’s the basics: the first one she ripped out. We had them replace it with our backup which we didn’t realize was the wrong size. They then replaced it with a smaller size, but not the original size. She started throwing up a ton shortly after, but we attributed it to her getting over the flu. Then we noticed the gtube was popping up and down so our pediatrician replaced it because we thought it was defective. Then a week later, it sucked completely tight to her skin and she started throwing up blood, but no food. We went in and the surgeon on call said it was too small, so he put in a bigger size. She started doing much better than she had for weeks, but a week later, it happened again. We went in and had a radiology study done and discovered the balloon inside the stomach to hold the gtube in was blocking and sometimes slipping into her intestines. So it was actually way too big and when it slipped into her intestines, it would suck tight. Also, all her food would go straight into her intestines and block off any way for air and acid to escape, thus making her throw up. So we went down to the 1.0 but it still was too big. We had them switch it to the 0.8 today and are hoping that’s small enough since it’s the smallest size available in this particular style. Whew! It’s been quite the stressful 2 months and it all started with a 4am ER visit because she had yanked the gtube out.
  • Monday, September 12, 2011 6:31 AM, CDT
    It is simply amazing to me that after everything Evie has been through, she is such an incredibly happy baby.
  • Tuesday, September 13, 2011 6:55 PM, CDT
    Exhausted after a long day of doctor appts. Next steps include getting a new style feeding tube as her 7th one is still getting sucked into her intestines and having another surgery to put tubes in her ears, scope her nose and airway to see how everything is healing, and clip her lip tie. Surgery should be in the next couple weeks.
  • Thursday, September 15, 2011 1:46 PM, CDT
    Evie is scheduled for surgery next Wednesday. The first surgeon (her ENT) will put tubes in her ears, clip her lip tie and scope her nose and airway to see how they are healing. The second surgeon will scope her stomach to try to figure out why she’s having so many issues with her feeding tube and then depending on what he finds, put in a smaller, different style tube. She will be admitted to the hospital for an undetermined amount of time.
  • Monday, September 19, 2011 7:39 PM, CDT
    Pre-op physical complete. Surgery time will be determined tomorrow. Pediatrician feels Evie will do well in surgery and that her past struggles with general anesthesia were simply a pre-trach issue. Please pray they can figure out why she is having so many issues with her feeding tube, that her nose and airway look good, that both surgeons have clear minds and steady hands, and that she recovers quickly. Now that she’s been home, it will be much harder to see her in a hospital setting again.
  • Saturday, October 1, 2011 6:44 PM, CDT
    Latest Surgeries
    On Wednesday, September 21st, Evie was put under to deal with multiple issues. The two big reasons were to replace her gtube and put tubes in her ears.

    We have been having constant issues with her gtube and finally discovered that the interior balloon (that holds the gtube in) was getting sucked down into her intestines. This would shoot the food straight into her intestines along with blocking off any escape for acid or air, leading to constant refluxing. We went to the smallest size possible in the MICKEY style, but it was still causing problems, so it was decided to go to a Bard style gtube that is much lower profile on the inside of the stomach. Because it has a rubber mushroom type shape inside instead of a balloon that can be easily deflated for insertion and removal, it is very painful to put in. (This website has images of the two styles part way down the page.) This made it necessary to put her under. The surgeon also wanted to scope her stomach to make sure her fundoplication was still intact and make sure the Bard would actually solve the problem.  Her stomach appeared to be fine, the gtube hole was in the right spot, and the Bard seemed to be the best option, so that was done.

    Evie has also had quite a bit of fluid stuck in her ears.  Because of her issues with her nasal passages, there is a lot more drainage and less of a way for it to escape.  The fluid was not draining on its own, so we decided tubes would be the best option.  Her ENT also wanted to scope her nose and airway to see if her nose had closed back up as well as check her trach site.  Unfortunately her nose is again almost completely blocked.  We weren’t surprised by this news, but still wish she didn’t have to have more surgeries down the road to open it up again.  The ENT also discovered scar tissue in her trachea above the trach from being intubated so many times.   This will make getting her off the trach more complicated.  We’re not sure of the extent of the scar tissue or what all will be involved to deal with it, but it’s not really very good news.  We won’t be attempting to remove the trach until after her first birthday.

    Evie recovered very quickly from surgery and we were shocked at how relaxed the situation was post-op compared to her other surgeries. They only periodically hooked her up to monitors and we were able to hold her right away.  Such a big difference from her NICU days!  That evening she decided she needed to be on the move and has been scooting along on her back ever since.  Her feedings have been going much better, though with teething, she still refluxes rather frequently.  Thank you for all your prayers!

  • Wednesday, October 5, 2011 8:52 PM, CDT
    I have gone back and added my facebook updates during the past few months so those of you not on facebook can see the progression of events.
  • Sunday, October 9, 2011 10:12 AM, CDT
    Evie just rolled over! Praise the Lord!
  • Monday, October 10, 2011 11:42 AM, CDT
    This coming Wednesday, Evelyn will be having a swallow study done. They will do a live xray while she is given barium mixed with breastmilk and then with baby food to see if she still aspirates or if she has learned to protect her airway. Please pray she passes so that we can start attempting to feed her by mouth.
  • Thursday, October 13, 2011 6:02 AM, CDT
    She passed her swallow study! This means she is no longer aspirating and it is safe to start trying to feed her by mouth. Much easier said than done, as she has never taken more than a few swallows of food in her five months. She was not thrilled with the experience during the swallow study, but with time, she will hopefully begin to enjoy the experience of eating. Thank you for all of your prayers! We are just so thrilled for this progress!
  • Friday, October 14, 2011 6:23 PM, CDT
    So she passed her swallow study…what does that mean for little Evie? Well, it really only means that we can now ATTEMPT to feed Evie by mouth. Remember, Evie has NEVER eaten by mouth. She has had a few swallows from a bottle for her three swallow studies and that’s it. We now have the huge task of teaching her to eat. Our first step is going to be an attempt at nursing, all the while still feeding her via the gtube. We’ll try this for a few weeks at least. We may try spoon feeding if she is still panicking when milk actually gets in her mouth, just to ease her into the new sensations, then try nursing again. The speech pathologist (they’re the ones who actually deal with feeding issues) thinks nursing will help Evie relax more than a bottle. Praising God that I’m an experienced nurser! If Evie starts taking some volume by mouth then we will adjust her tube feeds accordingly. As for when the gtube would come out? Probably not for quite some time. If Evie gets to a point where she takes all her food by mouth, it typically would still be many many months before the gtube would be removed. Because Evie will be having more surgeries in the future, we will probably just leave it in until those are done with. That way she will not need any tubes put down her throat and in the event that surgeries are too traumatizing and she struggles with eating again, we will not need to redo the gtube surgery. So that’s what passing her swallow study means for Miss Evelyn. We are praying that over the next few months, she will start nursing more and more.

    As for her trach, swallowing typically means more suctioning, but that’s about it. She will have her trach until at least her first birthday and then it will just depend on her other surgeries. It generally is very difficult to get a child off a trach since they need to relearn how to breathe, so we are expecting she will have the trach for at least 2-3 years.

  • Saturday, November 12, 2011 4:39 PM, CST
    We got some good news at the cardiologist this past week. After Evie was born, she had pulmonary hypertension, which is where there is abnormally high blood pressure in the arteries of the lungs. We never realized how important that first breath is to the body of a baby in getting the lungs and heart working together properly! It resolved in the first week, but we’ve kept a close eye on her heart. We saw the cardiologist again soon after Evie came home and although structurally her heart appeared fine on the ultrasound, her EKG revealed an unusual electrical direction in her heart. The typical direction is down and left and Evie’s is up and left. This was unusual enough that he had his colleague take a look at it. Many times this can indicate a problem with the heart, so at this visit, the cardiologist himself did the ultrasound. He confirmed again that structurally her heart looks great, which we were very relieved to hear. It seems this is just another way that Evie has decided to just be different. She certainly likes doing things her own way!

    Evie seems to finally be growing as well. She’s rolling all over the place and loves to watch big sister do anything and everything. She is also wanting to be held more and more, which is just fine with me: we have lots of snuggling to catch up on. There doesn’t seem to be any change with eating. She will nurse at times and seems to enjoy it, but doesn’t like to swallow any milk that she gets. We will start trying some solids as well to see how she does with them. It will be a long slow road to getting her eating all her food, but for now we are very grateful for her gtube as it allows her to go at her own pace while still getting all the nutrition she needs.

  • Wednesday, November 30, 2011 4:09 PM, CST
    Our visit with Evie’s ENT had both good news and bad news. Let’s start with the good, shall we? We have moved up in trach size! Previously Evie had the absolute smallest trach possible, which meant her airway was also very small. This made suctioning very difficult. In fact, the suction catheters we used were either a size so small that it could even suction her thicker secretions or a size bigger that was almost too big to get down into the trach. We grew more and more concerned as it got colder and drier and her secretions got thicker and thicker. We were suctioning more and more, but It was getting harder and harder to clear her airway. Add to that her getting a cold last weekend and it was terrible. So we were excited to go up a size and give her a bigger airway for the winter. Changing it out went well, but Evie is still getting used to it.

    Now the bad. The tubes in Evie’s ears are not doing their job. Granulation (scar) tissue has grown around the tubes, blocking them. Her ears are producing so many secretions, it all can’t get through the tubes. Poor girl has had constant junk bubbling out of her ears since we got the tubes (prior to the tubes, nothing could get through and the pressure would just build and build, which was very painful for Evie). So it’s back to surgery on December 12th. The ENT is hoping he can just put in new tubes of the same size and hopefully they will work better this time, but there is the possibility that once he gets in there he will decide he needs to just do bigger tubes. While this would allow her ears to drain and infections to heal, it also means the holes are not likely to close up again as with smaller tubes. This will mean permanent hearing loss, but to an unknown degree. Unfortunately if the infections continue, her eardrums will develop scarring which will also result in some hearing loss. We still have never been able to do a hearing test on her left ear because of the constant drainage, so she may already have hearing loss on that side.

    Please be praying that the ENT will think another attempt at the smaller tubes will be beneficial and that her ears will finally be able to clear. Please pray that anesthesia will go well. She has not always done well when being put under, so no surgery is ever simple with Evie. Please pray for us as we navigate a new hospital. All of Evie’s previous surgeries have been at a different hospital and as much as we hate surgeries, it is nice to see the same faces and know where everything is. Comfort in familiarity, I suppose. Thank you everyone for your prayers for our family. They are very much felt and appreciated.

  • Monday, December 12, 2011 8:32 AM, CST
    This past weekend has been quite the whirlwind of sickness and unfortunately, Evie has not stayed completely healthy, so we will be postponing her surgery. Please pray for us as we regain strength. Both Ty and I at separate times had to go into the ER. We were very blessed in that the nurse who was going to start helping us out tomorrow was able to come out on Saturday to care for Evie.
  • Monday, December 12, 2011 10:37 AM, CST
    New surgery date is December 22nd.
  • Thursday, December 22, 2011 3:15 PM, CST
    First off, thank you all for your prayers. God answered them in an unexpected way. It turns out the recent problems with her ears are not from constant infections but from a reaction to the tubes themselves. Granulation tissue had formed around the tubes causing drainage and blockage, but her ears themselves showed no sign of infection. Evie had quite a few problems with granulation tissue around her trach and gtube sites and we now think this is just how her body reacts to foreign objects. We are so grateful we have had the same doctor for so many of her procedures as he is gaining a better understanding of how she responds to different things. When I asked if granulation tissue is common with ear tubes, he said, “It’s common for her!” Evie just likes to do things her own way in everything! The ENT replaced the tubes with ones of the same size and we’ll just have to wait as her body adjusts. Unfortunately, there is no real way to know if the tubes are even still needed, but with her history, we’re not comfortable removing them yet. Please pray that Evie’s body adjusts quickly, that there is minimal pain during this time and that we will not to have to redo the tubes again.

    Also be praying as it appears sooner rather than later, we will need to baby proof more thoroughly as Evie is trying to crawl! She’s been pushing up on her hands and knees and desperately attempting forward motion. She already gets around pretty well with rolling and scooting on her back, but she’s absolutely determined to crawl! We’re so thrilled and shocked. So many times in the NICU, we weren’t sure she would even come home and now to watch her thrive brings us such immense joy! Love our little girl!

NICU Timeline

  • Sunday, May 8, 2011 2:23 PM, CDT
    Our little Evelyn has made her appearance, but unfortunately has been sent to a NICU in Des Moines with breathing problems. Ty was able to accompany her right away and Megan is joining them shortly. Please be praying for our little girl. She seems to be doing well and is quite a fighter, but isn’t out of the woods yet.
  • Sunday, May 8, 2011 9:05 PM, CDT
    All together in DSM now. Evelyn is struggling with a few different issues and we are trying to get her stable enough to deal with some of the bigger things. It’ll be a few days before we know anymore. She’s definitely a little fighter and seems to be improving well. Just can’t wait to hold her.
  • Tuesday, May 10, 2011 8:30 PM, CDT
    Evie is doing well and off of most of her support systems. She has been diagnosed with choanal atresia, which means she has blocked nasal passages. The blockage is 4mm thick on both sides and means she will need surgery to correct. Waiting for recommendation from specialist for time frame to complete surgery. Thanks for all the support and prayers through all of this!
  • Wednesday, May 11, 2011 8:31 PM, CDT
    Surgery has been scheduled for next Friday morning. The doctor wants to give her one more week of growth. She’ll be in the NICU for at least another couple weeks, but we are praising God that her nose is fixable! After they remove a few lines, we’ll hopefully get to finally hold her tomorrow or Friday!
  • Thursday, May 12, 2011 2:33 PM, CDT
    Got to hold Evelyn for the first time this morning. She seemed to enjoy it as much as I did! They just removed her breathing tube and made a special pacifier that will keep her mouth open so she can breathe. She seems to like it much better than the breathing tube down her throat. Please pray this continues to work!
  • Tuesday, May 17, 2011 3:21 PM, CDT
    Official stats: Evelyn Jane Louise. Born 12:28am Sunday, May 8th, 2011. 6 lbs 14 oz. 19 inches.
  • Thursday, May 19, 2011 3:57 PM, CDT
    Surgery 8am (central time) tomorrow morning. Please pray.
  • Friday, May 20, 2011 5:52 PM, CDT
    Praise the Lord! Surgery was a success! Started late, took longer, and was much harder than the surgeon expected, but went well! Little Evelyn is now just recovering and resting. Please pray as tomorrow she will come off the breathing tube and start breathing thru her nose for the first time.
  • Saturday, May 21, 2011 7:56 PM, CDT
    Evie is officially breathing thru her nose! Still not out of the woods yet though. They’ll be watching her closely, as well as considering a blood transfusion to get her hemoglobin levels up. Thank you for all your prayers. They are being felt.
  • Sunday, May 22, 2011 9:06 AM, CDT
    Blood transfusion in process but hopefully this will help get her hemoglobin levels up enough where she won’t need a second one later.
  • Sunday, May 22, 2011 8:53 PM, CDT
    Got to hold my baby girl today for the first time since surgery. Felt so good. And loved seeing her close her mouth and continue to breathe!Monday, May 23, 2011 5:28 PM, CDT
  • Monday, May 23, 2011 5:28 PM, CDT
    Surgeon says little Evie’s nose is healing up great! So thankful. It will still be quite a bit of work to keep it irrigated and clear, but it’s a great start. Next step is hopefully replacing the feeding tube with bottling and nursing!
  • Tuesday, June 7, 2011 8:45 AM, CDT
    Please pray for our little Evelyn as she has two more surgeries scheduled for tomorrow to help with some feeding and reflux issues.
  • Tuesday, June 7, 2011 2:39 PM, CDT
    Surgery is being postponed due to some other suspected issues. Better safe than sorry when it comes to surgery.
  • Wednesday, June 8, 2011 3:22 PM, CDT
    Unfortunately Evie is still struggling with breathing and we’re just not sure why at this point. Tomorrow morning at 7:30am they will be putting her under anesthesia to take a better look at her airway. Please pray they can find the problem and that it is immediately and easily fixable.
  • Thursday, June 9, 2011 3:11 PM, CDT
    Evie’s surgery went well this morning. Scar tissue had built up at the site of the original blockage in her nose, but the surgeon was able to remove it. She is already breathing better! Please pray it heals up well this time!
  • Friday, June 10, 2011 10:35 AM, CDT
    Evelyn is struggling more today as she is exhausted from the healing process. Please pray for her. We expect to be here at least another three to four weeks as she heals and we address a few other issues.
  • Sunday, June 12, 2011 2:54 PM, CDT
    As Evie’s nose is healing, there are a ton of secretions that are making it very difficult for her to breathe. It has been decided that a tracheotomy will be the best option for her. The surgery should be happening tomorrow sometime.
  • Monday, June 13, 2011 8:38 AM, CDT
    The OR would not allow an after-hours surgery (our surgeon was already booked up for the day) so her tracheotomy will be tomorrow at 7am. Please pray Evelyn remains comfortable and calm today.
  • Tuesday, June 14, 2011 10:47 AM, CDT
    Tracheotomy went well this morning. Evelyn is resting comfortably. Pray that it heals up quickly so she can breathe without pain.
  • Wednesday, June 15, 2011 5:17 PM, CDT
    Great day with Evie today! She is breathing so much better with the trach! Praise God!
  • Sunday, June 19, 2011 6:01 PM, CDT
    Two surgeries tomorrow morning for reflux and feeding issues. Please pray they go smoothly and she heals quickly over the next week.
  • Monday, June 20, 2011 11:30 AM, CDT
    Surgeries went smoothly and Evelyn is recovering well. Thank you for the prayers.
  • Saturday, June 25, 2011 7:33 PM, CDT
    Evie is doing great! She is healing very well and we hope to have her home in the next few weeks!

CHARGE Syndrome

Since her birth, Evie has struggled with routine procedures and new problems seem to crop up one right after another. What we originally thought would be a 2-3 week stay at the NICU slowly morphed into a 2 month stay and what we had hoped would be simple surgeries became complicated rather quickly. In the first few days after Evie was born, we were informed that choanal atresia is sometimes associated with other birth defects. There is a recognized grouping of these birth defects known as CHARGE syndrome. Initially, CHARGE syndrome was ruled out as Evie did not seem to have any of the other features, but when she started struggling with swallowing, the doctors decided to take a closer look. She was clinically diagnosed with CHARGE syndrome at almost 4 weeks old, but we only recently confirmed it with genetic testing. So what is CHARGE? The CHARGE Syndrome Foundation says:

“CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.”

“The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome, but we’re not changing the name.”

Clinical diagnosis is now made using the four major features or the four “C”s.

Choanal atresia. This obviously was Evie’s biggest issue.

Coloboma. This is a hole or cleft in the eye that usually affects vision. Evie has a teeny tiny coloboma in her left eye. The opthamologist doesn’t think it will affect her vision , but only time will tell.

Cranial nerve abnormality. This can affect swallowing, sense of smell, and cause some facial palsy. Evie is having issues with swallowing, but it is unclear whether this is due to her CHARGE or her traumatic start. We have no idea if she can smell due to the choanal atresia and at this time she doesn’t appear to have any facial palsy.

Charge ear. This involves the outer, middle, and inner ears. The outer ear is shaped differently and you can see Evie’s ears are floppy on top. The middle and inner ears can be malformed causing hearing loss and balance problems. We know that Evie can hear, but it is unclear if she has any hearing loss.

Chargers are extremely complex individuals, so things are never very simple. Getting Evie off her trach will be a long process. In fact, we will not even be attempting more surgeries on her nose or trach until 2013. Getting her to eat by mouth will more than likely take quite a long time. She will probably have constant problems with her ears even after surgeries for many years. And speaking of surgeries, anesthesia is never routine with a Charger.

But…

Evie is amazing. Yes, she has some extra challenges, but we would never trade her for a “typical” child. She smiles with her whole body and her laugh (though not audible) brings us so much joy. She loves to play with her big sister and is currently trying to crawl. She likes to “talk” by blowing raspberries and is able to get some squeaks out as well. She has already taught us so much about ourselves and God. We look forward to seeing how she’ll surprise us. Every new milestone is so much more amazing when you aren’t sure it will ever happen.

So what does Evie’s future hold? To be perfectly honest, we have no idea. With a special needs child, there are no illusions of predictability. We do, however, know the next few steps. This next year I am going to call The Year of Therapy. Lord willing, there will be minimal hospital time and we will focus on developmental challenges, eating by mouth, and speech therapy and/or sign language. We’re going to hopefully see her grow and get stronger and be ready to potentially have 2013 be The Year of Surgery.

We are so grateful for all of your prayers this past year as we see how God has been at work in her life as well as ours. We will continue to ask for your prayers as we try to do what’s best for our little girl and give her all the support and opportunities possible in this day and age. Thank you!

Evelyn Jane Louise

Our first daughter, Aleyna Hope Clara (meaning “Bright Hope”) has a hymn with her name, Great is Thy Faithfulness (from the line “strength for today and bright hope for tomorrow”) and little Evelyn also has a hymn.  We had a few names that we liked, but Evelyn was my first choice.  In the chaos of those few hours after her birth, Ty asked what I wanted to name her before they sent her off to Des Moines.  I remembered that Evelyn meant “life” and that was what I wanted most for our little girl.  The next morning I remembered that it could also mean breath! How perfect! God amazes me with how well He knew her and her situation before we had any idea!

God kept steering me back to the hymn Praise to the Lord, the Almighty.  I kept pulling away from it because I really didn’t think I had a name to go with it, but He kept bringing it up again and again.  We sang it at multiple churches on multiple occasions in the last few months and now, where we are, I can see how perfect it is for my little girl:

Praise to the Lord, the Almighty, the King of creation!
O my soul, praise him, for he is thy health and salvation!
All ye who hear,
Now to his temple draw near,
Join me in glad adoration.

Praise to the Lord,
who o’er all things so wondrously reigneth,
Shelters thee under his wings, yea,
so gently sustaineth!
Hast thou not seen
How thy desires e’er have been
Granted in what he ordaineth?

Praise to the Lord, who doth prosper thy work and defend thee!
Surely his goodness and mercy here daily attend thee
;
Ponder anew
What the Almighty will do,|
If with his love he befriend thee!

Praise to the Lord,
who with marvelous wisdom hath made thee,
Decked thee with health, and with loving hand guided and stayed thee
.
How oft in grief
Hath not he brought thee relief,
Spreading his wings to o’ershade thee!

Praise to the Lord! O let all that is in me adore him!
All that hath life and breath, come now with praises before him
.
Let the Amen
Sound from his people again;
Gladly fore’er we adore him.

Could that not be more perfect for our little girl, struggling to breathe and spending weeks in the NICU?  I’ve printed out the words and hung them up in her room and they are a constant source of comfort to me.  Not just the words themselves, but the reminder that our loving, sovereign God worked out so many things to bring this hymn to my mind over and over again.  If He cares that much about her name and what hymn I picked to go with it, then surely He cares enough to watch over her and care for her.

An alternate source of the name Evelyn is the latin word for bird “avis” which I didn’t know until a few days ago.  Twice in this hymn it talks about God’s wings spreading over us to protect us.

Her middle names took us awhile to come up with (as in over a week after she was born).  We wanted her to have 2 middle names like her big sister, one of which being a family name.  Jane is a variation of John, meaning “God is gracious” and God has been!  Louise means warrior which seemed appropriate when the nurses keep talking about what a little fighter she is.  It also is Ty’s grandma’s middle name, my great-grandma’s name, my grandma’s middle name and my sister Kelly’s middle name.  All strong women that have a legacy we’d like to pass on.

So Evelyn Jane Louise is what God named her and then slowly, He let us know what her name already was!  Praise to the Lord!