Exciting News!

Got a phone call today... Mackenna qualifies for Make A Wish!!! We're so excited! She SO deserves it! :)
  • horselover13
    :D!!!!
    by horselover13 at 01/27/12 3:52PM
  • ootda
    YAY!!!
    by ootda at 01/27/12 4:51PM
  • hmjmom
    Super news!
    by hmjmom at 01/27/12 6:17PM
  • ootda
    I still can't believe it!! I am so happy for your family!!! She will love her time at Mickey and Minnie's house!!!
    by ootda at 02/22/12 8:51PM

Kaden Walker

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Most of you have probably already seen this on facebook, but if not, here you go! :)

Kaden Walker
10-9-11
6 lbs. 14 oz.
19"
  • heatheronthehill
    He looks perfect!!
    by heatheronthehill at 10/20/11 1:28PM
  • ootda
    I love this one!!!!
    by ootda at 10/20/11 3:21PM
  • stevenswife
    I love it too--he is just precious!
    by stevenswife at 10/20/11 4:15PM
  • hmjmom
    Beautiful baby!
    by hmjmom at 10/20/11 4:29PM
  • teelside
    Yes, a very beautiful baby. Thank God and congratulations.
    by teelside at 10/21/11 5:55AM

7-24-11 Update

It’s been a long time since Mackenna’s last update, but like they say: no news is good news! Mackenna’s been doing VERY well recently! She’s still been seeing her speech therapist and occupational therapist once a week and her dietician once a month. Speech therapy consists of both feeding and communication for Mackenna. Her feeding has been going exceptionally well! She’s just been eating like a normal toddler & we haven’t even had to supplement with her g-tube in about 3 months now! She’s even decided she wants to take her meds all by mouth too! She was technically restricted to thickened liquids because she aspirated thin liquids at her last swallow study. But we’ve been working with her on thin liquids for a while now, and her speech therapist thought it was time to have another swallow study. She had that last Friday and passed with flying colors! We haven’t talked to her pediatrician yet, but he’ll get the report and then we’ll talk to him about removing the g-tube. We’ve heard that they typically like to leave it in a few months longer just to be sure she does ok and stays hydrated, but that’s an exciting thing for us! When she had to have the tube put in, we thought she’d have it for much longer! Her pediatrician even hinted at least 5 years, and she’s not even 3 yet!!
So, she’s no longer restricted to thickened liquids, but she still uses a straw cup. She’s not skilled in drinking from an open cup yet, and it puts her at risk for aspiration because tilting your head back to drink from a cup opens your airway, whereas drinking from a straw with your head down protects your airway. So, still some work to do there, but she’s made great progress! Now that her feeding has really taken off, her speech therapist will focus on communication. She’s got a couple of different things going on there… a condition called Apraxia of Speech, and Disfluency. Basically, the Apraxia is where she comprehends most everything, but she can’t always coordinate her mouth and brain to be able to verbalize what she’s thinking. And the disfluency is kind of akin to stuttering. For example, she will repeat the “n” sound several times before she actually says something intelligible. If you remember, last year she had an MRI of her head, and we found out that she’d had a stroke at some point, and these speech issues are likely due to that stroke.
Mackenna will be starting preschool when she turns 3 in October! Can’t believe our baby’s starting school! Guess she’s not a baby anymore! We’ve been meeting with her First Steps Coordinator and some people from the school about transitioning from First Steps to developmental preschool. She will have an evaluation to determine what kind of special services (speech, OT, etc.) she’ll be eligible for at school. Because she’s having so much trouble with communication right now, her speech therapist recommends that she get additional outside services because the amount of speech therapy she’d get at school would not be enough. So, we’ll be looking into that too.
The dietician has just been making sure that she’s been able to maintain/gain weight and remain hydrated while not using the g-tube. She also gives us nutritional information. The occupational therapist has been working on feeding skills and communication, as well as fine motor skills… things to get her ready for preschool.
Mackenna had a check-up with her cardiologist last week. The doctor just barely saw her & said, “Wow! She looks GREAT!” She said her x-ray looked really good, and after talking to us, she decided to leave her meds as they are. She asked about all areas of Mackenna’s life (as usual) and when I told her that we haven’t had to use her g-tube in about 3 months, she was shocked! She even said she got a chill & goosebumps! She just couldn’t have been more impressed and excited to hear that! Clearly, another sign that they never thought she’d ever be doing SO well! Mackenna will be going back to the cardiologist in January (6 months) for an echo. As long as things look good there, and she doesn’t have any problems between now and then, she will change to yearly appointments instead of semi-annual.
In other news, Mackenna’s going to have a little brother in October! His name will be Jesse Wade. We had a fetal echo for him at the beginning of the month to check the heart for defects. The cardiologist says everything looks normal!!!!  Praise God for that and for all of Mackenna’s progress! And as always, thanks for all the support and love you’ve shown us!
  • hmjmom
    Love this update!
    by hmjmom at 07/25/11 10:28AM
  • neenee
    Love, love, love it!! :)
    by neenee at 07/26/11 6:49AM
  • ootda
    Smiling!!!! And always thanking God.
    by ootda at 07/26/11 6:04PM
  • be_with_me_lord
    Wonderful!
    by be_with_me_lord at 07/27/11 2:30PM
  • split_rock
    So glad to read this!
    by split_rock at 07/27/11 8:10PM
  • mtnest
    Such great news! We are so blessed to have these amazing heart girls. I can't really call them heart babies anymore. God is so good.
    by mtnest at 07/30/11 3:20AM
  • ktcasebolt
    ^That's true! They're growing up on us, aren't they? ;-)
    by ktcasebolt at 07/31/11 7:18PM
  • kiss_the_rain
    That's wonderful!!!
    by kiss_the_rain at 08/02/11 1:41AM

11/23/10 9:56PM

Mackenna’s heart cath today went rather well! They didn’t even have to do any of the coiling or angioplasty! Dr. Hoyer said there weren’t as many collateral vessels as they’d expected & there wasn’t anything they needed to balloon! The right pulmonary artery is still rather small (about the size you would expect for a large newborn), but good enough for surgery. The pressures are also in a good range for proceeding with surgery.

Since surgery is scheduled for next Thursday (2nd), they went ahead and did all of the pre-surgery stuff while we were there today. So, we talked with the surgeon, doctors and nurses, and signed all the consent forms. They also did the blood work and x-rays. Dr. Turrentine (surgeon) didn’t have a whole lot to say. He said that things look good for going ahead with surgery next week & that this one won’t be too much different from the last one -- in terms of the actual surgery/procedure. The nurse practitioner told us a few things that we could expect to be different this time -- in terms of recovery:

• She said that they like for the Fontan Completion patients to come out of surgery already extubated (off the ventilator)! But if she doesn’t, then it won’t be long before she is. With her first 2 surgeries, she was on the vent for several days, so this is very different!
• After this surgery, patients sometimes have a lot more drainage from around the heart, which makes it necessary to have 2 chest tubes instead of 1. The more drainage there is, the longer she will be in the ICU.
• They may also have to do a “fenestration,” which is basically leaving a hole that allows the blood from the right side to flow into the left side. This is done to act sort of like a “pop-off valve,” to relieve pressure.
- If they have to do this procedure, she will likely be on Coumadin (along with her current aspirin regimen) to prevent a blood clot, thus preventing a stroke. *Side note: Being on the Coumadin requires extra monitoring.
- If the heart function is good, this hole can be closed off later in life; but it may also just be left open. If the hole is closed up, the Coumadin is no longer needed.
- In more complex cases (like Mackenna’s), the hole sometimes needs to be bigger than usual. The bigger the hole, the more mixing there is of the red & blue blood. This means that she won’t be as “perfectly pink” as we’d hope for, but the function of the heart would be better in doing so.

It’s very important that Mackenna doesn’t get sick before surgery, so she will likely be pretty much quarantined at home until then. Also, her immune system will be a little compromised after surgery, so we’ve already been warned to keep her away from germs in the weeks immediately following surgery.

So, specific prayer requests:
• she remains healthy up until surgery (same goes for family!)
• surgery goes well
• chest tube drainage is low
• recovery goes well & quickly
• she remains healthy following surgery
Prayers of thanksgiving for:
• success of previous surgeries
• being blessed with the possibility of this surgery (completing her repairs)
• Riley Hospital & the Ronald McDonald House
• Dr. Maiers (cardiologist), Dr. Hoyer (heart cath doc) & Dr. Turrentine (surgeon)

We’re obviously nervous about the upcoming surgery, but we’re so thankful and appreciative of all the prayers & support! Thanks for helping us get through it all!

Love,
Kris, Tiffany & Mackenna



  • trishie
    Thanks so much Tiffany for the update. Jonathan and I will certainly keep these things in our prayers. Yay for the good news and the list of thanksgivings!
    by trishie at 11/23/10 10:41PM
  • teelduo
    You are all in my thoughts and prayers!
    by teelduo at 11/25/10 10:39AM

New Update & Surgery News

11-9-10

Well, it’s been a while since our last update…
Our baby girl isn’t such a baby anymore! She turned 2 on October 4th, and a feisty little 2-year old she is!
She had her check-up with her pediatrician, who was very pleased with her growth and progress! She won’t be receiving the Synagis vaccination (for RSV) this year as it is not recommended for her age.

In late September, Mackenna started having some balance issues, falling a lot and hitting her head with most of those falls. I talked to Dr. Maiers (the cardiologist) to be sure it wasn’t something having to do with her heart. She didn’t think so, but set us up with Dr. Lytle (Developmental Pediatrician). We saw her on October 4th and she scheduled us for an MRI of her head. Dr. Lytle called me a few days later with the results. Mackenna has an area of dead tissue on the left side of her brain in the temporal & parietal lobes, which is likely from a stroke that she had while on by-pass during one of her first 2 surgeries. The spot is about the size of a golf ball, but it’s all healed and there’s nothing to be done for it now. This news, unfortunately, did not explain Mackenna’s balance problems. However, it IS likely that it’s responsible for some of her speech and feeding delays. The speech therapist is changing the way she does Mackenna’s therapy sessions, which seems to be working well so far!
As far as balance, she’s no longer been having that problem. So, doctors and therapists seem to think it might have just been her recent growth spurt that threw her off balance. She IS getting VERY tall! (She is in the 97th percentile!)

On November 2nd, Mackenna saw her cardiologist again. Her heart echo looked really good and her oxygen saturation levels were reading in the mid-80s (very good for her!!) I explained to the doctor that although this is good, it is not an accurate picture of what Mackenna is like on a daily basis. She is a very active little girl and over time her symptoms are worsening (including turning purple, shortness of breath, cough, fatigue, etc.) The doctor was very receptive and wanted to do an experiment to see how Mackenna’s oxygen dropped. She let her play and run around until she turned purple, then let her run around some more! When she rechecked her levels they were immediately at 62% and DROPPED to a low of 48%! This means that during activity, she is getting less than half of the oxygen that she should have in her blood. This is what we wanted the doctors to see and we are so thankful that Dr. Maiers listened to our concerns. She then said she’d talk to Dr. Turrentine (the surgeon) and see what he thought, but that she thought we’d probably be moving on with surgery fairly quickly.

Dr. Maiers called me today and said that Dr. Turrentine agreed with her but wants to do another cath before surgery. This will give him a look at what the pressures in her arteries are, whether the teeny-tiny pulmonary artery they were worried about has grown any, and if they need to coil off any more collateral vessels as they did in her last heart cath.
Dr. Maiers & Dr. Turrentine both wanted to get the surgery done before Christmas, so her heart cath is scheduled for Tuesday November 23rd, after which, she will be kept overnight and then sent home. So, if all goes well, she should be home before Thanksgiving.
Her surgery is scheduled for Thursday December 2nd. We’re hoping she will be home before Christmas, but that will just depend on how surgery and recovery go.

As always, we thank you all for your continued prayers and support!
We are very nervous about the upcoming surgery! We’re happy that it’s the last surgery and that she’ll finally be PINK all the time! But it’s no fun watching your child go through open heart surgery – for the THIRD time! It’s probably going to be rather difficult this time too, as she will not understand why she has all the wires hooked up to her and why she has to stay in bed, etc. But we know that the final outcome will be SO worth it, and that God, friends and family will help us get through it! So, again, thank you!

Love to all,
Tiffany, Kris & Mackenna

  • teelside
    We'll just keep thinking of this as such good progress and pray WAY HARD. XO XO xo
    by teelside at 11/10/10 10:24AM
  • teelduo
    Praise God for the improvements she has made!!! May HE continue to bless all of you. Much love and prayers!
    by teelduo at 11/10/10 11:14AM
  • purrph1
    I can't believe she is 2 already! I will pray for her and her upcoming surgery.
    by purrph1 at 11/18/10 9:07PM