Appointment Day Update 5/30

THANK YOU for your prayers! Oh my word, did God hear you all and bless us today! Readers digest version: Gideon ROCKED the day, he did so good! It was a long day with a lot of stuff but he did great and all our results  were ….. well, maybe not all totally awesome but great information and gives us more info to work with. If you want more details… read below :)

We arrived at the clinic early and had time to get a coffee from Starbucks. We checked in for our ENT appointment 20 minutes early and the speech pathologist and occupational therapist showed up early so we started with them before ENT. We went over his previous tests and updates and changes since then. We were at ENT to get his ear canals checked because he didn’t pass his previous hearing tests and they didn’t  know if it’s  because his ear canals are so teeny tiny, if they are deformed, if the nerves are damaged, if there is fluid behind his drums or what reason he failed his test before. I had a momentary lapse of brain function and asked the ENT doctor to check his eye as he always seems to have a leaky eye. The pediatrician and cardiologist have both checked it for me and told me it looks like it’s probably just an under developed tear duct and as long as it’s draining well, it’s ok. They also said it looks like he may have protein in his tears which is also just fine. He doesn’t have an infection, his eye just drains and pools in the corner of his eye so it gets goopy but he should grow out of that.  Good news #1 for the day, his eye is fine! Then I remembered that ENT stands for ears, nose & throat not eyes, nose & throat. Hahaha. Whoops. Yep, scrambled eggs up sometimes, there I swear.

Then we set up for the FEES study, the one where they shove a camera up his nose to see how he swallows while on the breast. We did an x-ray swallow study last time to see how he did with the bottle and he had micro aspirations that time so they wanted to see how he did on the breast since he is exclusively breastfed and never takes a bottle because he doesn’t take a bottle well. I had joked about Bo saying ‘I wonder how many people will see my boob today’ knowing there would be at least a few people in the room for the study. At one point, I looked around while Gideon was nursing and counted 9 people in our room, ourselves included. Hahaha. I was totally covered though. Gideon did great during the study, good news #2 for the day! They also checked his nasal passages for us since we asked them to check that as well as they have never been able to get an NG tube down his left nostril, we wanted to make sure the anatomy on the left side was good like the right, they confirmed that it was. Yay.  Good news #3 for the day. 
Next was to the procedure room to get his ears cleaned. Lucky for me, I was  having a meeting with the speech pathologist & occupational therapist to go over the results of the swallow study and missed that. I do not like to be there when they do procedures on Gideon that make him scream and cry so I’m thankful Bo was there with him while it happened and they just brought him back to me as soon as it was over to comfort him. I didn’t even watch during the swallow study when they put the camera in or watch on the camera while he was eating.  I’ll just fix it all for him when it’s all done and over with but I don’t want to watch. The doctor cleaned his ears and was able to see his ear drum  on 1 side and there didn’t appear to be any fluid behind it at  all. Yay! Good news #4 for the day.

Next we met with the occupational therapist  to get directions on thickening his liquids. He still needs to increase his calorie intake and they wanted me to do that by doing what I’m doing already but replace the rice cereal with 2 bottles per day thickened with non nutritional gel. Gideon doesn’t suck/swallow/breathe very well when he gets tired which happens pretty quickly when nursing so thickening his liquids should help with that if he gets 2 bottles per day that are thicker so easier for him to swallow. I asked her about thickening with something that has nutritional value and calories in it and she told me I could thicken with rice cereal. She was pretty opposed to feeding him rice cereal with a spoon because he is only 4 months old and doesn’t have much strength or control in his trunk/neck/head yet. So she taught me how I can thicken his liquids with rice cereal and feed it to him in a bottle. We tried it and it didn’t go well. They gave him a larger size nipple than what he has used in the past and he guzzled and choked even on the thicker liquid. So she said we would have to thicken even more. I told her why not use the smaller nipple that he is used to so she decided to do that. He did better but still not great, he guzzled and choked again. She wanted to thicken more, we talked about just thickening a lot and spoon feeding him (which is what we have been doing and works pretty well for the most part) and she said she would contact the cardiologist to see what he says about it. I will bet money that he will reply and tell me to do what I feel is best for him since I know him the most and I know the signs of  aspiration as well as reflux and they as long as he continues to grow and remain healthy. I should hear back tomorrow. Sort of good news #5.

Next we were onto audiology for his 3 hour hearing test. The one I did alone with him back in March. Lucky for us, this time, he had just finished eating a ton as well as screaming a ton and was beyond exhausted. We got him changed, swaddled and snuggled on daddy’s chest to get to sleep. Bo got him to sleep very quickly and they started the test. I snuck out to go reheat my coffee that was 3 hours old and pick up his prescription from the pharmacy. Last time we had this test, we were unable to complete even 1 ear during the whole 3 hours we were there. When I got back from picking up his prescription, they had completed 1 ear all the way with great results and were halfway done with the second ear already. 
She finished the test and told us he had great results. It took just under 2 hours total and he was heavily sleeping the entire time. He has very minor hearing loss at a very high pitch and low volume in both ears which could just be due to his tiny ear canals that he may grow out of. Even if he doesn’t, it’s so minor it likely won’t even affect him at all because he can still hear all the sounds of speech and language at normal volumes so his hearing is good. Good news #6!

We got to leave an hour and a half early which we were also excited about, to pick up the big boys, relieve my parents and get everyone home for dinner. Sadly, it took us an hour to get from Childrens onto I5 to get home even taking the back road, side route that waze recommended. We got to my parents, hung out for just a while and are now getting everyone to bed. Myself included. We are all EXHAUSTED. But what a blessed day it was! All of our prayers were answered, We got so much good news about Gideon, I didn’t get bad belly bart, the kids behaved at my parents house, we can’t thank you enough for lifting us up in prayer today, it was heard, felt and appreciated so much!

Gideon has gained more weight, he is now up to 9 lbs, 3 oz and we do need to get more calories into him to bulk him up before surgery but I’ll figure that out. I have avocado, rice cereal with breastmilk, cream cheese or butter. Any other recommendations of super high fat & high calorie foods that are simple with only 1 ingredient each?  If so, comment on the blog or on the FB post to let me know if your high fat, high calorie, simple food puree texture ideas.

Seriously, we can’t thank you enough for the prayers. Please keep praying for weight gain & strength for him. We would love for him to be quite a bit stronger before surgery and they are still shooting for 12 lbs before he goes back in but we’ve only got just over a month to get there.

Thank you, thank you, thank you. Blessings on all of your heads for the love, support & prayers! 

Cardiology Update 5/17/18

Finally! Some good news! We got to see Gideons pediatrician this week as well as his cardiologist. I really like both of them and actually look forward to being able to see them and had happy anticipation waiting for the appointments. Last time I mentioned how every appointment seems to bring a new round of bad news for us, well the thought never crossed my mind for either of these appointments this week. The doctors are so kind, friendly, positive, encouraging and nice, I never once thought either of them would have any bad news for me so that came as a shock this morning when that’s how it went at the cardiology appointment.

But first, he had his 4 month well child check with the pediatrician. That went great. He was 9 lbs 1 oz so he has gained weight, unfortunately, he hasn’t gained enough to remain on the growth chart curve like he was last month. He dropped from the 3rd-5th percentile down to the 2nd percentile on the growth chart. Not a huge deal, just not the gaining progress that we had hoped for. The pediatrician said to take it up with the cardiologist since he is far more concerned with how much weight to gain and how quickly he needs to gain it. He got his vaccinations and had a fussy afternoon the rest of the day and I pretty much snuggled him on the couch for the rest of the day while the kids watched tv and Bo picked up dinner on the way home from work. All in all, the pediatrician is very pleased with his overall health and how he seems to be doing developmentally. We did discuss his flat head and options for that and have decided to put that on the back burner for right now. He doesn’t think it’s severe and said we have at least 4 more months to make a decision and we can just hope and pray that with growth, strength and positioning, it will round out nicely. I have some other therapies to investigate that a friend told me about that I’m excited to learn about this next week as well which I had never heard of before.

On to the cardiologist this morning. When he asked me how he was doing, I said great. His extremities don’t get cold and purple like they did when he was born which shows he is circulating well and that’s always a concern and a risk because of the un-repaired heart condition he has as well as the repaired part that he has, if something were to go awry with that, that’s one of the symptoms we would see. I know he is growing because his newborn clothes don’t really fit anymore but I know he’s not growing that fast because size 0-3 month clothes are still pretty big for him. So I know there is weight gain, I just didn’t know how much until we saw the pediatrician. The nurse attempted to get a blood pressure on him and after the 3rd or 4th try, she got 68/44 on his lower leg which is not really good. That’s actually pretty bad although his blood pressures aren’t supposed to be that of a kid with a healthy heart because his heart doesn’t pump the blood right so his normal numbers are different than a healthy heart kid. His o2 saturation was also hanging in the upper 70’s, lower 80’s which is also not great. Again, with his specific heart condition, we never expected his saturation to get as high as it has been since birth, he has always surprised the doctors at how well he saturates having all mixed up blood being poorly pumped around in the wrong direction. Last month he was around 94-95. Putting the decline in weight gain together with the crappy blood pressure and the even crappier o2 saturation, we’re looking at signs of heart failure which means a quicker scheduled surgery than we planned. *GULP* Trigger anxiety here, I was NOT prepared to hear anything other than excellence at this appointment. The doctor even came in to talk to us about all that before the Echo but he just said lets wait until we get the pictures back from the echo before we start making any plans. The doctor said he LOOKS great, it would surprise him if the blood pressure and o2 saturation were accurate because his color is good, his work of breathing is pretty good (not great – he always has some subcostal retractions but he was having some intercostal retractions today in addition which isn’t normal for him), his pulses are fantastic, upon exam, he looks great, his vitals are just crap so lets hope they are just inaccurate. So they did a 13 lead EKG then we went in for the echo. I had bad belly bart from anxiety.

The results of both the Echo and the EKG were fantastic. His aortic arch (that was repaired in the first surgery) looks fantastic as does the blood flow from the heart and the pulmonary band is exactly at the sweet spot right now. Right where they wanted it to be for perfect perfusion. That means, as he grows, he will get less and less blood flow to the lungs because the band will get tighter and tighter then be removed at his big surgery so we have to do the surgery before that band gets too tight but he should ideally be a couple pounds bigger before then if we can make that happen.

I asked if he had the results from the swallow study and he said yes, he does not want to put the NG tube back in and doesn’t want me to stop breastfeeding. He doesn’t even know that we need the FESS study (the camera study we are doing in a few weeks) because Gideon is growing and has been very healthy since we’ve been home, he is thriving, he just thrives slowly, hahaha. We discussed me getting up earlier to get in an extra feeding which I would be ok with, or putting the NG tube back in which no one is ok with, supplementing with bottles which we would be ok with or starting him on a cereal if he tolerates it which is what we decided to do. So I’ll go buy him some rice/grain cereal to mix with breast milk and see how he tolerates it to get at least 10 extra calories per day. I’m hoping he will tolerate that well and have no problems with the new texture and swallowing, etc and it will be exactly what he needs to gain an adequate amount of weight to be nice and chubby for a surgery still tentatively planned at the end of July or early August. We want to wait to be able to enjoy the summer but get it done and have recovery time  before cold/flu season hits again because this will be a much longer recovery for him.

Tolerance  with solids & adequate weight gain
Healing of his Plagiocephaly (flat head) without the use of a helmet.
A good appointment with urology next week
A good appointment with  ENT/Audiology/OT the week after for lots of things.
Our marriage, the other 3 boys & home schooling.

We can’t thank you enough! Really, we are so appreciative of the love, support, comments, prayers.

The week

It’s been a rough week for me this week. I think between the busyness of appointments, results, parenting, home schooling, home keeping, playing and trying to rest, I’m a bit overdone. Before I had kids, I almost never cried. Now, my body is trying to recover from  7 pregnancies in 6 years while nursing a baby and running on very little sleep for 4 months, I cry pretty much daily for one thing or another. Gideon is doing great. We are so blessed and thankful for his health and progress, but on the other hand, there are little things that I take as ‘bad news’ that feel like defeat or steps backwards and it’s disappointing for how hard I work to do my best for him and the boys. But there is more than Gideon to focus on in the family. I try to take care of myself so I can take care of everyone else, I suck at pouring into my marriage right now have many opportunities for growth to pour into my marriage  :) and have 3 other kiddos who need just as much of me as well. Elijah is a bit older, a better helper and more independent but he needs me the most with his school work because he is doing more new learning right now than tracing letters or making sounds like Moses may be working on and can do a little bit on his own. Solomon is 3… I haven’t even started and don’t plan to anytime soon. Parcheesi, Uno, coloring & painting are his ‘school work’ for right now and I’m totally ok with that.

Wednesday was an exceptionally rough day for me. We have had some challenges at home outside of Gideon and I just don’t have the capacity to handle much extra these days. I cried my way to co-op after struggling during the morning  and missed the first hour of my class. Solomon was also absent from his class as he was sitting in a time out with me hiding in a separate room because  of his behavior. I sat feeding Gideon and just let the tears flow trying to gain the motivation to go pull the kids from their classes and bail out and go home for the day on our last day of school for the semester. I was found hiding in the time out room sobbing with Solomon at my feet by a friend who was popping in to say hi and drop something off for me and took a look, dropped everything she had in her arms and came to sit with me and talk with me. We talked, she encouraged me then she took Solomon to class for me after his 2 teachers had come looking for him. Then another friend appeared with a hug, a listening ear and a lot of encouragement and understanding for me. I’m so glad I didn’t get the motivation to pack up and leave because it was good for me and the kids to be there. Until it was time to go, then I could have used an extra hand to help me get Solomon to the van. Again. Then my migraine kicked in on the way home. We arrived home, Solomon took his throne on the time out seat and the other 2 kids happily sat down in front of the tv to watch a show while Gideon and I laid down to rest.

Lately, I feel like every appointment I take Gideon to, I get more ‘bad news’. I often cry myself home from any appointments we have, upset that it’s more bad news resulting in needing to schedule more appointments and consider more procedures, etc. I think maybe I’m making up for my first 40 years of not really crying by doing it so often now. Ha. .There are appointments I’m intentionally waiting on scheduling right now just because I can’t take anymore bad news so I’ll avoid going all together (and they aren’t critical things that need to be scheduled immediately, so I can). When I cried myself home from Children’s last week, Bo said it wasn’t bad news, we gathered information about how to better care for Gideon. I said it felt like bad news. Just like our SPIO suit fitting this week, I felt like I got more bad news about getting him fitted for a helmet and custom making a suit to fit him and cried myself home from that appointment.  We have therapy every week to work on Gideons’ core strength and head control as well as any feeding issues and developmental things that need to be addressed (hands to mouth, grabbing for toys, rolling over, etc). I really like our therapist who comes to our house and usually learn something new each week about how I can better care for him. I often get sad at seeing how slow the progress is with him… he’s almost 4  months old now and still can’t even really hold his head up yet or withstand tummy time for more than a minute or so. Yet, I do see progress every week in other areas and can report to the therapist what we focused our work on for the week and what areas I’ve seen improvement in. While working with him daily, it almost feels like there are no changes, I am seeing him getting closer to reach milestones that most babies may reach at 1 or 2 months old and I’m getting really excited for it.
Then we had his therapy session. We reviewed the findings of his swallow study as well as how the SPIO suit fitting went and my therapist apologized for both.  She encouraged me from both standpoints about how to proceed with his feeding therapy as well as the SPIO suit and a helmet and just made me feel so much better about both things and others as well. She had solutions for all the obstacles that have come up and encouraged me how to better advocate for Gideon with some of these things to reach our desires for him. Thankfully, her and I have the same goals and the same ideas of how to reach those goals although his in patient therapist has different plans. Then we had our hour of therapy and Gideon ROCKED IT.  It was his best therapy day ever and she was even surprised at how well he did and how well he is progressing and gave me a new seat to attempt to have him try for 1 minute per day if he tolerates it and is stable in it. Hopefully soon you will see cute pictures of him in the fancy new seat the therapist is letting us borrow, as well as his tortle hat that he finally mostly fits in. I’m so glad the therapist had other ideas and possible solutions and actually totally disagreed with what his in patient therapist had told me regarding his care for a few different things and was completely and totally on my page with what I desire and feel is best for his care. I’m not sure if it’s because the in patient therapist usually only works with babies who are in patient in the hospital and it’s a little different when you’re at home or she is more conservative and our outpatient therapist is a bit more liberal, but his cardiologist seems pretty liberal as well so the 3 of us make a pretty good team in pushing for progress safely and trying new things for his care. After the appointments Gideon has had the past 2 weeks, I was just really discouraged and sad at the results. After therapy last week, I was totally empowered and encouraged that we can still plow ahead and make adjustments as necessary striving to reach our goals for his development and he isn’t doomed and we’re not ‘in a conundrum’ as one caregiver told me at one of his appointments with no solution to the problem. Apparently, I just need to find a new care provider when I end up with someone who doesn’t understand his condition, his size, or the timeliness of his situation wanting to reach certain milestones and make some developmental goals prior to his next open heart surgery which is possibly going to be in just 2 short months.

It surprises me how I used to be such a planner. I could literally have every detail planned out a month in advance with everything lined up and set out and ready to go for a whole month with nothing left out or forgotten. Then it got down to weekly planning, more and more kids added and weekly became every couple or few days.  Where I’m at now, it’s basically hour by hour. My months have turned into hours and I function literally about 3 hours at a time now. I don’t know what’s for dinner, I don’t know what we’re doing tonight or this weekend or next week. Nor can I remember what we had for breakfast today or what we did yesterday. I meal plan and write out the menu but I have no idea what it says until about 5pm which isn’t helpful when stuff is in the freezer and dinner time is at 5:30pm. I’m still not used to functioning only 3 hours at a time and look forward to a time when I can look ahead a day or 2 or 3 and not be overwhelmed and feel like I’ve got it handled and we are set up for success for the next day but I’m thankful I can take the time as it is and sit in the moments that I have as rough or as easy as they come and just be. My house is often a mess, it looks like a bomb went off with school stuff everywhere, 6 baskets of spilled out clean laundry across the living room floor with the play mat and Gideons’ new seat, backpacks, toys and more toys, blankets and pillows strewn about but whatever. Dinner is often 5 minutes ago when I realize I haven’t started it yet and Gideon is up for his 6pm feeding early so I get him situated, make dinner real quick then feed the family while I feed him when it’s done. But it’s ok. My cheeks were crusted with tears from the all day flow on wednesday and I could feel my skin pull when I moved my head from the crusty tears all down my whole face. But bedtime comes, hopefully sleep will ensue and tomorrow will be a better day. Everyday. As rough as it was, I’m still thankful for all the blessings. God puts the people in my path who could help me, encourage me with a hug, a listening ear, some advice or a LOT of understanding without judgement. And the hope for new mercies tomorrow to do it all over again just a little better than I did today. God also blessed me with the cutest sleeping babies in the entire world and I’m so thankful they don’t stir when I go in to take pictures of them snoozing :)

Prayer requests right now are for strength for Gideon. We see the pediatrician and the cardiologist next week for him and I’m excited and scared for both appointments. He NEEDS to have gained weight and I’m afraid he may not have… I don’t have a scale to weigh him here anymore. I really, really like both his pediatrician and his cardiologist and am always very encouraged by both of them so I’m really looking forward to them. Please pray that Gideon has gained weight and that his muscles develop and grow stronger and stronger each day! We could also use prayers for our ‘opportunities in marriage’ and perseverance to keep our focus and direction towards Christ.

Love & blessings! Kari


Swallow Study Results 5/4/2018

We had Gideons’ swallow study this morning at Seattle Childrens. Sadly, I did not prepare him well for this study and practice bottle feeding him but once prior to the appointment. It’s pretty neat how they do it, it was fun to watch except when he got upset but we gained more information about how we can better care for him.

They strap him in a seat and try to position as close to how he is positioned at home when he nurses but that’s nearly impossible to do in a hard  plastic chair that doesn’t bend or move so he wasn’t positioned properly to begin with. We later learned, that didn’t matter anyways.
The get the X-ray machine all set up next to him ready to video his swallowing.

They had him drink some milk from his bottle then switch to a bottle with barium in it and turn the X-ray on while he was drinking to see what route the liquid took as he swallowed it. It was neat to watch him suck, swallow and breathe… until he micro aspirated and he got the tiniest drop in his trachea instead of his esophagus where it’s supposed to go. Shucks. That’s what we were hoping wouldn’t happen. They switched back, fed him some more until he was fatigued (eating is an aerobic event for him which makes him tired quiickly) and switched to the barium again for just a few swallows until he aspirated a big drop of barium when he was tired. Double shucks.

Then they tried the side lying position which is closer to a nursing position and he seemed to do great… until he aspirated another big drop. Triple shucks. I was sad leaving there because i feel like he “failed” the test and Bo reminded me that it was a study to gain information which we did and it wasn’t something to pass or to fail. To me, had he not aspirated, we would have gained valuable information just the same but it would have been a pass, something to celebrate! A small milestone we can consider a victory in his growth and development so I left there a little sad at the next steps and what it will likely lead to.  

We already have an appointment scheduled with ENT at the end of the month and Audiology as well to re-do his hearing test we did before. They are now going to add a FEES study when we are there which is a fiberoptic endoscopic evaluation of swallowing. Basically put, they shove a camera up his nose into the back of his throat and have me breastfeed him and watch the liquid go down that way. Then they can have accurate results of how he breastfeeds as well as how he bottle feeds and if that comes back positive as well, he will likely get his NG tube replaced and have to go back to exclusive tube feeds again until he is stronger and he can swallow properly.

I left there feeling a bit sad and upset. Feeling defeated, like we have taken a step backwards in his development but also trying to count my blessings. It’s hard not to walk though the halls at Childrens and not be counting your blessings as you see some challenges that others are facing. I KNOW we are blessed beyond measure, but I am a bit sad that he may have to get the NG tube back in then we will be back to me pumping, measuring everything, having him stuck to a machine for 30 min 5-6-7 times per day. But that’s ok, I can be sad about it for a minute then be thankful that we have this technology and the resources that will help us to better care for him and do the best that we can for him. It would also probably be short term, a few months+, until he gets stronger and has better muscle development.  I was hoping we could avoid the tube prior to and after his next open heart surgery but if that’s what’s best for him to grow healthy, strong & well, that’s what we will do.

As far as thickening liquids for him instead, they said that’s very challenging for kids with Trisomy 21 because of his low muscle tone. They also did confirm today that he has reflux, so not only does liquid go down the wrong pipe when he swallows sometimes, it also shoots back  up into his throat from his gut and can then go back down the wrong pipe again with his stomach acid, etc. Because of the low muscle tone, the rings in his esophagus don’t move fluid down the way they should and his epiglottis isn’t as strong as it should be so if we were to just thicken breast milk for him to drink, it would likely just pool up and drip slowly down the back of his throat and be worse for his digestion and aspiration than liquid breast milk is.

We’ll see. The team from today is contacting his cardiologist today after they get the report done and told us for right now to keep doing what we’re doing (exclusively breastfeeding) and after we get the FEES study done, we may adjust at that point. The cardiologist will watch the study and read the report and decipher whether it’s severe enough to have me stop breastfeeding or not.

He is getting fitted for his SPIO suit next week, that may help with his strength and development as well, we pray that it does. We are just thankful that he has remained healthy with his high risk of aspiration and pray that continues as well since aspiration usually causes respiratory illness which we absolutely can not have with his cardiac/pulmonary status. 

Prayers for him to grow much stronger over the next 3 weeks and for a negative result on his FEES study! 

THANK YOU!!!!!!  


Gideon Update 4/29

I don’t have much to update but people have been asking and I had some cute pictures to share so, why not? I do have a prayer request for Gideon. He has his swallow study at Seattle Childrens this coming Friday morning, please pray that his suck/swallow/breathe pattern is good and strong and everything goes where it’s supposed to. The doctors aren’t sure if he has pretty bad reflux or if he is aspirating fluid into his lungs so I’m praying it’s not aspiration and that is just reflux that can be treated. His rattling sounds have decreased significantly over the past 2 months which is good. He is exclusively breastfed and we hope to keep it that way so we need the swallow study to go well this week!

Speaking of appointments this week, I could use some prayer for that. I looked at the calendar the other night and broke into tears. There is a lot on it. We have weekly therapy for Gideon which is in home so that’s awesome but also stressful trying to manage basically 3 toddlers while focusing on the infant with brothers around to work with the therapist. I’m so thankful she comes to the house but even still, it’s a bit stressful because the other 3 are only 6, 4 & 3, not exactly self sufficient and don’t really have the attention span where I could even stick them in front of the tv for an hour so I can focus on working with their brother. We have the swallow study, fitting for a special garment the therapist is ordering for him (a SPIO suit: stabilizing pressure input orthosis) that will hopefully help with his core strength and head control, I have my own doctor appointment to establish care with a new doctor and I’ve begged them to do a physical at the same time so I don’t have to go back for another appointment though I know they don’t usually do a physical at an establish care visit – (pray for that too please!) , he sees the cardiologist and the pediatrician, he is seeing urology as well as ENT & again with another 3 hour (or was it 4?) Audiology appointment… it’s just a lot. Other than medical appointments, all we do is go to church on Sunday and Co-Op on Wednesday and the kids often visit my parents as well so when I looked at the month, I just cried. I used to be so organized, planned, ahead of the game, I could look at the calendar and know exactly what I needed and have it prepped and ready in advance for everyday a month out. Now I look at the calendar, crumble into the fetal position and cry unable to even make it to bed the night I look at it, much less consider what I need to have prepped for the next morning. Ha. It’s really not that bad, it just looks scary and overwhelming and I need to work out child care days and figure out which appointments Bo will be at me with or who will be with the big kids where at or if we all go, etc. Anyways, I’m being dramatic so I could use some prayer for that please to ease my mind.

This is a new favorite picture of mine. Uneven cut fingernails with dirt under them wrapped around my finger. Love.

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

He has recently been able to get his left hand to his mouth which is exciting for a variety of reasons. Hopefully soon, he will get his right hand to his mouth as well but that doesn’t even seem to be on the radar just yet for him. He gnaws voraciously on whatever he can shove in his mouth, knuckles, his thumb, this afternoon it was his first 2 fingers which was just adorable because this is how we used to see Elijah as a baby all the time, with his first 2 fingers in his mouth. So cute!

He still makes the BEST frown face ever. That little lip……Oh my.

His therapist brought us the water tummy time mat I wanted to buy for us to use here. He seems interested in it but not enough to not scream and cry while he manages to hold his head up for 5-10 seconds to look before slamming face first right onto the mat  to just sob. Ha. Maybe we’ll make it to 15-30 seconds this week?? We could use prayer for that as well!!

He does pretty good looking up when he is more upright and likes to listen to me talk right into his face. I was pretty reclined on the couch holding him like this (I’m so lucky that snuggling him this way is actually one of our therapy exercises for him!) and he held his head up well for a bit, that was exciting.

He likes to wake brothers from their naps when it’s time for them to get up and party again. Neither of them actually got out of bed the other day when he came in to wake them though! Lol.

Love one another with brotherly affection. Romans 12:10a

Another day, ,another horrific tummy time experience. This was in his first 3 seconds before the screaming & crying started. Come on little man, you can do it!!!!!

95% of the time when it’s time to get up and eat, this is how I find him. OUT COLD. I had even taken him out of his bed here already and he was still asleep. Little nugget, I should probably check to see our babywise book to see if it’s time to adjust his sleep schedule since  he almost never wakes up on his own when it’s time to eat. He certainly is ready to nap after being awake for 1.5 hours though.

Oh the irony. I’m the anti screen time, anti tv, anti video game, anti ipad mom who does my best to minimize electronics for the kids (except for the shape up exercise game on crummy weather days) and the therapist found the ONE thing that seems to really motivate Gideon to look up and hold his head up. He is enjoying learning the praise baby songs but prefers the actual cartoon characters better from baby einstein. I need to find and save a couple of videos that we can use during therapy that keep his attention and we will see how long we can get him to hold his head up. The therapist and I laughed pretty hard when she told me to get my Iphone out and find a cartoon for him and as soon as I did, he popped his head right up to watch it and tracked it very well. She knows I’m anti electronics so it’s funny that it’s what we will use to help Gideon out right now.

Another one of those times when he should be eating. Lol.

He certainly loves bath time. No matter how upset he is, if I put him in the bath, he instantly calms down and is very mellow.

Here’s that cute little beanie baby I took his picture next to a couple of months ago. He is quite a bit bigger than he was last time I took this picture! He weighed in at 8 lb 8 oz at the cardiologist last time we were there. He is still fitting into some of his newborn clothes but I did notice some fluff growing on his legs. He had bony little chicken legs when he was born so to see some fat around the knees was pretty exciting. And seeing the difference in this picture versus the last time I took it was pretty crazy too.

Here was the original one of him next to the bear from 2 months ago. Not a great comparison because of different angles but  you can at least see how much smaller the bear appears next to him in the one above versus the one below. 

Time to get him up for his last feeding for the night. THANK YOU for continuing to pray for us! I’m so thankful we have such an amazing prayer group holding us up in prayer and petitioning for our specific requests. You all are such a blessing to us, a prayer may not seem like you’re helping out a lot but  it’s the biggest help for us! God is bigger than my calendar, than any diagnosis, than any hurdle we will face so we continue to seek Him first and not lose our focus to the best of our ability and trust in His promises because He is good. All the time.

P.S. I’m not going to edit the post, I’m just going to laugh at the the very first sentence that reads “I don’t have much to update” as I just clicked the ‘preview’ button then had to SCROLL forever to get to the bottom of the post. I really don’t have a lot of new information to share but I do love a good run on sentence and verbal vomit. It makes me feel better to write and get stuff out, hopefully those of you who read this far really wanted to and are entertained by my antics. At least I make myself laugh :)

Cardiology Update 4/19/18

We got to see the cardiologist today, what a lucky day for us! We enjoy Gideon’s cardiologist so much, he is just a nice guy to be around and is so good with Gideon and reassuring to us and kind, we look forward to our time in his office. Thank goodness too since we will see him for… well, at least 18 years! Lol.

Last time we were there, he basically gave me the freedom to do what I wanted with Gideon’s feeding. Bottle, breast, formula, NG tube, let him sleep, wake him up, I could decide all of that on my own as long as the results were within the parameters that he set for us. I have adjusted things quite a bit since then and the results were better than expected! Gideon is now exclusively breastfed, no more bottles and no more formula and will even sleep 10 hours at night, yes, all in a row! I made a few changes over the past 4 weeks that got us to this point but haven’t changed anything for just over a week now to make sure we could maintain good weight gain with this new routine and he’s done fantastic! 

His weight today is 8.87 lbs, still basically the weight of a newborn at just over 3 months but his height and weight maintain a steady increase although he is in the 2-4% on the growth chart.

The doctor asked if I had any questions and I rolled out the scroll. Seriously. I keep a list of questions on my phone for all of our appointments so I don’t forget. He laughed with me and was very gracious to go over everything with me even pulling up research information on the computer to confirm and show me documentation of things I questioned then stepped out to do his own research to confirm his thoughts on things. He examined every part of Gideon that I had a question about and said he’s doing amazing, keep up the good work.

Our plan is to return in 1 month for another exam and an echo cardiogram to check the status of the pulmonary band and his perfusion and cardiac output and go from there. The band sounds great from what he can hear and we will get actual measurements of blood flow next month to see how much it has constricted as Gideon has grown. His oxygen saturation today was at 94% which is fantastic for a fella with a band constricting the blood flow to his extremities so we were pleased to see that. His saturation has always been a bit higher than they expected it to be, but the surgeon made the band pretty big for him so he would have lots of time to grow into it.

The surgical plan at this point is to consider surgery around Gideon’s 6 month age. That would put us having surgery mid July. Depending on the measurements from the band and his growth rate at that time, we may push it out another month or 2 if it’s safe to do so, just so we can enjoy a full summer of playing before we have serious restrictions for the entire family for a decent period of time again but it will all depend on how he is doing closer to that time. Pending no emergencies, we will be able to schedule it at our leisure, but we won’t have a ton of notice before we do. We hope to have as much notice as we can so we can plan accordingly and be able to set up a care team again of friends and family who are willing to come and help our family out while Gideon is living in the hospital and we are rotating shifts up there with him and at home with our big boys to have help at home with care for the kids, food, housework, etc.

I could ramble on more but some baby is awake and yapping for his afternoon snack so I need to go feed him. Imagine that, 3pm right ON THE DOT and he starts barking for food. Lol. His wind up to getting fussy actually sounds quite a bit like a bark, it cracks my dad up and he begs to hear it.

I have so many other blog ideas and updates I could do, I just don’t make the time to do them all. Be on the lookout for a funny post in the near future with some truth bombs about parenting. Just some stuff  you would normally crack up about watching on TV but couldn’t imagine happening in your house, yeah, that stuff, it happens here. Lol. Hopefully I’ll make time to blog about it soon. You will laugh. We cry. Hahaha, just kidding.

Thank you all for following along!

Prayers are for continued weight gain and we could actually use some prayers for his core strength. We work with a therapist each week on his core strength and head control and it’s SLOW progress. We are diligent to do his exercises and stretches everyday to help him gain strength as best we can which will help his pulmonary and digestive systems as well as just physical strength so we have more freedom with him like being able to be worn in the carrier to go out, etc. Also for health for our whole family. We have been so incredibly blessed this cold/flu season to have avoided pretty much everything and have now gone back to church and attended co-op so we need to remain healthy! All of us! Gideon is doing fantastic, stable and growing but even just a cold right now would land him back in the CICU and could have a huge impact on him and our family so we do our best to take our vitamins and wash our hands, get lots of sleep and avoid getting exposed to any bugs to the best of our ability. We do spend more time at home than we ever have before which is a blessing and a bummer, sometimes it can get boring avoiding parties or crowds or events we would normally like to attend but it’s also a lot of work getting 4 kids out of the house and sometimes it’s just easier to stay at home, blast some Toby Mac and have an epic family dance party in the living room. We generally welcome healthy visitors, just check with the medical schedule for the week and know that the 3 big boys will literally DIVE on you if you come over to visit and beg mercilessly for your attention. They are still a bit starved for attention and fun.

Much love and many blessings to you all!
The Bradshaw Crew –  Kari

Prayer Request – 4/10

Lucky for us, we LOVE our pediatrician as well as our cardiologist since we see them both so often now :) 4 kids and a heart baby with special needs & weekly therapy, we see the doctor often. Gideon got to see the pediatrician again today for a possible umbilical granuloma. He was treated for it 3 weeks ago but it hasn’t healed. He always has some gooey yellow’ish ooze on the inside of his shirts that comes from his belly button. His belly button never healed right from birth and still isn’t quite right. It’s quite a cute little ‘swirly button’, as we call them here but it oozes and it bothers me. There is no smell to it but still, it’s gross. So he was treated for it with a silver nitrate stick at his 2 month well child check and it’s still oozing. I took him back today to have it looked at again.

The doctor said it looks exactly like a granuloma but there is a small chance that it’s an umbilical polyp instead which would need to be closed in a surgical procedure. We are hoping it’s just the granuloma and I have some follow up treatments I can use at home for it and of course, I’ll be researching what essential oils could help this as well :) The prayer request is that it’s just a granuloma and it will dry out/close up with this treatment he got today. It looks like a matchstick they stick into his belly button and rub around on top of the granuloma which looks like a little red, wet ball of skin inside his belly button.

We also had his weekly therapy today which went great. He is showing progress though still doesn’t have great head control. Our goals for therapy right now are head control and neck/trunk strength. Progress is consistent but slow, I’m very excited for better head control soon. The therapist asked me if I had a play mat for him and I said I do, I just recently put it back into the closet. I feel bad putting him on the play mat and leaving him be because I feel like it’s just boring and I’m ignoring him so I don’t use it really anymore. She reminded me of the therapeutic benefits of the mat so I got it back out today and he is batting at toys and has his legs going full time which is great exercise for him. He isn’t doing tummy  time on it yet because he doesn’t even really do tummy time yet since his trunk and neck are still so weak but eventually, he will. Right now tummy time is assisted with a roll on the floor or on our chest with assistance as he grows stronger.

I kind of want to get him an inflatable water tummy time mat to play with like the one below (amazon picture) because that looks fun for a kid for tummy time. To be able to push down and have little inflatable fish float around inside looks fun. Have any of you ever used something like this for their kids for tummy time? What did you think? I think it could be fun and beneficial for his therapy but the OCD in me with wanting less and less (and MUCH MUCH less) stuff in this house doesn’t want any additional ‘stuff’ in the house to find a home to store, bring in and bring out to vacuum everyday, move around and clean up, etc…. hahaha 

Again, thanks for the prayers… I’ll let ya know how the ooze dries up soon!

Micro WHAT!?!?! The words no man wants to hear….

Disclaimer: These pictures have absolutely nothing to do with the story I’m sharing in this post, but what fun is reading the story with no pictures? They are so cute, I had to share them with you!! I’ll caption them in parenthesis above the photos so you know what you’re looking at, although it is pretty obvious, but more so, that you know it’s not part of the story I’m telling.

(Elijah doting over little brother, this is a very common picture in our house)

So, to the story behind the title of the blog.. When I was a 911 dispatcher, shift change happened for us very quickly. Literally in seconds, we would have to unplug our headset and ever so quickly have the new dispatcher plug in to ensure we didn’t miss any radio traffic from our police officers, firefighters, paramedics, etc. It literally took 1 second to swap dispatchers from the old to the new because we type so quickly, the one leaving would log off and just as quickly as the new one sat down and plugged in, they would be logged on and recording data immediately ready for whatever the 911 world had to offer.

(Gideon is now grasping at things and bringing things to his mouth which is very exciting for Elijah who loves to play with him the most and for me because that is good development he is showing.)

So the dispatcher shift change was instant. As a nurse, that’s a whole different story.  When we were living in Children’s Hospital for Gideon’s’ first month, the nurses shift change took about an hour each time. There are layers of pages of documentation of what happened with their kiddos for the 12 hours before they got on shift and the leaving nurse would have to brief the arriving nurse on everything that went on. Especially if the nurse was new to us, she got the whole entire history plus the last 12 hours in great detail. There are so many layers of pages of documentation, vitals, medications, measurements, weights, input, output, etc to go over and they would click through each one and the incoming nurse would take notes on a clipboard as well for things they wanted to remember or needed to do.

(snuggling his easter bunny)

2 nights before we were discharged, during one of the briefings for the oncoming nurse, I could have swore I heard her say “micropenis” but assumed I mis-heard her and blew it off. I had never heard that before and it sounded silly, I was sleep deprived and delirious from living in the hospital for a month, surely, I was wrong.

(he LOVES bath time)

Except that I wasn’t wrong because I heard it again the very next night. I questioned the nurse when I heard it and she said yes, she did say micropenis, it was one of his diagnosis they were following and she could have the doctor tell me about it at rounds in the morning when he came by. I said ok and wondered why he had a new diagnosis I had never heard of before then I went and did what anyone would do. Google: micropenis. Bad idea. I closed my laptop and decided to wait until I could speak with the care team in the morning.

(working those neck muscles holding his head up. He still has very little head control but is making progress each day as we work with him to strengthen these muscles each day).

The next morning, we had rounds and the team did their spiel. Then the cardiologist who had been working with us for the week hung back to discuss this diagnosis with me. He explained it saying that it wasn’t necessarily an anatomical finding, it is likely due to his hormone levels and his cortisol being off and potential thyroid issues which is common after heart surgery and could just be a testosterone level or something and said we needed to follow up with an endocrinologist later, it wasn’t anything emergent. That sort of put my mind at ease about it. But does my boy have a micropenis? Hmmmm… doesn’t look like it to me but he’s 5 lbs and uncircumcised… of course he has a tiny penis. Lol.

(dreaming of boobie buffet while he should be eating but we were getting a good neck stretch in before he woke up)

I stayed off google and decided to wait until we saw the endocrinologist, which we got to do this past week. I’m so thankful for the Seattle Children’s Hospital South Sound Clinic in Federal Way, our Cardiologist is there as well as the endocrinologist so we don’t have to go so far for some of our appointments. The doctor was such a sweet gal,  very kind, friendly and patient with me. She explained that the diagnoses was most certainly due to an anatomical finding and the result of measurements of his penis. She said there are things they can do hormonally that may help him out or we may just ignore it and let him be. They can test his hormones and they will test his thyroid every 6 months because he is a cardiac baby and cardiac kiddos get regular thyroid checks but we can’t do that now because he is in a first puberty state right now. Apparently between 2-4 months, men go through their first puberty stage where male things happen and things grow and move into place so it’s not a good time to test the thyroid. So we have options we can chose from based on the findings of her exam and all the results we would get from testing.

(he has been trying so hard to find his thumb lately to suck on it, Bo finally just stuck it in his mouth the other night and he was so satisfied. He hasn’t been able to get it back on his own but he has got to his thumb knuckle a few times to suck on that for a bit, it’s so cute.)

She did the exam and said Gideon doesn’t have a micropenis at all. She measured multiple times and said absolutely not, he has a completely normal sized penis in length and width, exactly on par with an 8 pound baby – 8 pounds 6 oz to be exact at that appointment. She thinks they measured when he was 5 lbs and he did have a tiny penis but he was a tiny baby so it was even probably proportional then, he was just a tiny little guy and there aren’t really any standards for them to compare it to. Be that as it may, even if he did actually have micropenis, he doesn’t anymore, it has grown in size since it was measured before and everything is in place where it should be for him. YAY! So we don’t even have to do any of the lab tests right now because has normal anatomy.

(best biggest brother ever)

I was happy to leave after a quick appointment with her with some good news and no need to follow up. Cardiology will check his thyroid in 3 more months for their standard cardiac testing and we likely won’t have to see endocrine again. That was good news.

(Ok, have you seen the camel commercial from a few years ago where the camel walks through the office and says “mikemikemikemikemikemikemikemikemike!! What day is it mike!? HUMP DAY!!!!” If you haven’t seen that commercial, go youtube it right now. It’s hysterical. For a long time following that commercial, my dad would call me – his name is Mike – or I would call him on Wednesday every week and say it and we would laugh a lot. It’s sort of died out but recently, I’ve started it back up again texting my mom every single day saying ‘mikemikemikemikemikemikemikemikemike! what time is it mike!? FEEDING TIME!’ always with a picture attached of Gideon SLEEPING. When he should be eating. He likes to sleep, which is great but he needs to eat too. So it’s a huge joke now that I send my family these text messages with the random Mike messages attached and sleeping baby pictures when he should be awake eating. This is one of those times. What time is it mike? FEEDING TIME! Hungy Mike? Starving to death Mike? Hey Mike… anyone there!!!? HELLOOOOO Mike!!!!!!!!!!!!!!!!!!!!!! hahaha. it’s a funny joke, we all laugh.)

(Again… MIKE… MIKE!!! Are you there Mike!!!!?! EATING TIME MIKE!!!!!!)

(He has the cutest little frown known to man. Bo can make him frown on command, repeatedly and we laugh hysterically while I also die a little bit inside feeling bad for him but it’s just so funny. This is just a glimpse of his sad little frown face but usually the frown is pointed sharply down and the bottom lip sticks out quite far. Really, it’s hysterical. I’ll have to get a better picture for you to see sometime.)
Anyway, that was all for now. Cute pictures and a story I maybe shouldn’t have shared publicly because it’s private but we have decided that we are sharing this journey with those who are willing to pray along side us so we will share the whole journey. The good, the bad, the ugly, so you can pray specifically and celebrate with us when we have victories to celebrate as well. So here is a little celebration you can join with us in. A normal sized penis and 8 pounds and 6 ounces of baby luvin’!

Thanks for following along and keeping our family in your prayers!

There is a fundraiser coming up soon if you’re interested to benefit Seattle Children’s Hospital. It looks like a tasty one too and close to my heart since it’s the fire department I volunteer for putting it on! We hope to have our whole family there to show support but not likely at 7:30 am, we are more of a 10:00am family now :) Maybe you can stop by, show some support and say hi! Let me know if you have any questions about it.

Much love to you all!

Gideon Update Saturday 3/31

Gideon has done great the last couple of weeks since we pulled his NG tube and quit his cardiac meds.

He is always peeking with 1 eye to see what’s going on around him ;)

We have in home therapy every week with a therapist who teaches  me how to help him developmentally. Our number 1 focus right now is on head control and muscle strength in his trunk to help his lungs & diaphragm for breathing and eating. I do exercises and stretches with him everyday and his progress is consistent.

Sometimes I get glimpses of just how small he still is….

His brothers are always in his face. All 3 of them love him so much, he doesn’t get much time alone when he’s awake.

Yep, I fell over the hill. Shucks. Ha! The kids loved the cake! Daddy did a great job making that one.

Always the star of the show. Then he goes up to nap and the other kids get the attention again. Lol. All my kids are so loved by so many people, I’m thankful for the relationships we have and our community.

Dreaming of boobie buffet.

More love from brothers

We have attended our home school co-op the last few weeks and have been trying to catch up on our work at home as well.

Again with the love from brothers :) 
Brothers again

The week after we pulled his tube, his weight gain was great. This past week, his sleep schedule changed a bit and he stalled  out on his weight gain so we had to revert back to our old schedule and add in an extra fortified bottle everyday to maintain good weight gain.  He gets prune juice everyday now because he was only pooping every 3-4 days and they want him to poop everyday so it’s even harder to show a weight gain when he poops everyday now. Lol.

He is still a happy, content little guy for the most part. He had a few fussy days after his 2 month pediatrician appointment where he received his vaccines but in general, he sleeps, eats and does therapy exercises and stretches and starts the routine over again.

Prayers are for continued weight gain as we look ahead to his big heart surgery in a few months!

THANK YOU for following along, walking through this with us, praying for us and checking in to see how Gideon is doing! Love and gratefulness to you all!


Getting a routine down

This was  a draft from a few weeks ago that I never completed about when I was learning to get a routine down with all 4 boys. LOTS has changed since then but the pictures are still cute and say a lot so here is that un-done update anyways :)

I hope to have an up to date update soon!