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!

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