Author: Kari

One of the ways our family has asked for help and support is for others to give blood. Gideon used a large amount of donor blood during and after his surgery and may again when he has his big surgery in a few months. So many of the other babies & children in the cardiac intensive care unit did as well, it would be great to give back and you can help us out with this! Below is some information about when, where & how you can give blood!

This is the upcoming blood drive schedule search form.  Enter your zip code and dates and see what’s closest and most convenient for you to go to, to give blood.

http://www.psbc.org/programs/drives_schedule.asp

Below is information regarding who can give blood so you know if you’re eligible

https://www.psbc.org/programs/blood.htm

We have been so blessed by the generosity and caring of others, this is still a need we have and we feel it is also a way we can try to give back a little to help others. Check to see if you are eligible and would like to help out in this way!

THANK YOU for considering this and for those who have already donated!

When you have to go to the doctors office and there  is a woman in there with 3 children who all have rashes, coughs and fevers RUNNING EVERYWHERE in the entire waiting room, you gotta cover your cardiac newborn up to protect them! What a big, fat bummer for that mom having 3 sick kiddos, I totally feel for her, but goodness, there is a well side and a sick side for a reason, please respect the boundaries because while we are doing well and Gideon is ROCKING life right now, a cold can still kill him and we try really hard to avoid germs and being around anyone who has been exposed to any illness.

We got to see our cardiologist today for the first time since Gideons’ birth. We had been seeing a different cardiologist before birth who we thought we were going to stick with until we met him. Sadly, he wasn’t available for our last appointment so we had to see another one of his partners and had to wait until today to see him. He was worth the wait though! What a great appointment we had!

Medically, Gideon is doing fantastic! His blood pressures are so good, we are discontinuing his cardiac medication. That was a shocker! Due to the size of his liver and the big changes we decided to make today, we are keeping him on the Lasix for a while to help keep him and make sure that if he has any negative symptoms, they are from the nutritional  changes not from going into heart failure. Eventually,  he will go into heart failure when his heart can’t support his growth and he outgrows his pulmonary band but we will be having his 2nd heart surgery either just before or right as those symptoms start so hopefully that’s not for a while and we will be ready for surgery to correct it before he really has any symptoms.

We discussed his nutritional needs and how our plan has developed so far. Our goal is to pull the NG tube prior to his next surgery so hopefully he won’t have to have that placed in again after the surgery. He told me to just pull it now. WHAT!?!?!?!?!?! Seriously!?!? He takes 3 full feeds of fortified milk per night from the tube, that will be a big change in calories to drop a night time feeding and change them to breast milk only, that’s too big of a change for me to be comfortable with. Not the cardiologist though. He said if he starts losing weight or goes a week without gaining we need to replace the tube and do more feeds that way but if can maintain at least 5-10 grams of weight gain per day without, I can basically do whatever I want with feeding him on any schedule I want and do breast or bottle or both fortified or not. He knows I’m weighing him constantly and monitoring it very closely as I do with the meds to stay within the guidelines so I can cut back on that now and weigh once per day just to track his progress. Apparently he trusts us a bit to make good decisions for Gideon and is sort of giving me free reign within a set of boundaries. It feels good to be trusted with his care and reassured that we seem to be doing everything very well for him this far.

Sadly, I made the mistake of not eating because we rushed out of the house this morning in a hurry then raced to our first appointment and go out of there so early, we were able to bump up the 2nd appointment an hour so we raced to that one too and didn’t get a chance to eat in between. I seriously need to get some more of the Slique bars to keep in my van, they are delicious and nutritious, I lived off them in the hospital daily and will do it again when we have surgery, I need to keep a box in my van too. So I got a nasty migraine. After 1 quick stop in a parking lot for me, I did make it home before hurling my guts out from the migraine then I devoured a big Jersey Mikes sandwich for lunch. It was delicious and made me feel so much better. I was still dizzy, tired & hurting though so Gideon and i rested for a while. Well, we laid down at least, he was bright eyed and bushy tailed and ready for a party now that he can breath much better with the NG tube and the crusty boogers stuck to it. LOL.

He is 7.89 lbs now which Dr said is about the 5th percentile for his age. I’m surprised it’s that low, he seems like a normal sized baby to me now but he is, for a newborn, not for a 2 month old. :) He was only in the 2nd percentile last month so that’s great growth and they are very pleased.

Look at that sweet sticker free face!! I need to spend some time with the adhesive remover tonight and essential oils to help his skin a bit but what a cutie!! Not having that cord hanging, dangling, and catching on everything from him is so nice! I hope he keeps eating better and better and we can keep it out!

We discussed the surgery plan for his next surgery. “The big one” they call it. Because the pulmonary band the placed in him is so big, he may get a couple extra months out of it. He said we may even make it to 8-9 months before his next surgery if his cardiac output and pulmonary status remain strong. So we could be looking at surgery anytime between now and September or October. Ideally, the want him at least 12 lbs and at least 4/5 months old but the doctor thinks he will hit both of those milestones and still have some life left in the pulmonary band before he outgrows it so we will have a bit more time to wait and plan for it. The risk of the surgery declines greatly every month and every lb he grows from about now until 12 lbs & 6-8 months so there isn’t really any point in waiting beyond that to have the surgery as the risk won’t decline anymore so we will do in late summer or fall depending on the status of his band.

Prayer Requests:

Praise for his medical status so far! So many answered prayers, we are so thankful to God for his provision and to all of you for your help and encouragement along the way. The meals we have received have saved my behind … well… pretty much 3 times per week every week when they arrive. We are so blessed and thankful and praise God for what He has done, especially through all of you!

Prayer for Gideon to continue to improve with his oral feedings. We will do a swallow study soon and hope the results are that he can continue breastfeeding and we will get into a new, good routine having taken out the NG tube and reducing the calories he gets that he still gets plenty of nutrition to grow and eats WELL. He still tends to tire out quickly and get lazy which causes him respiratory distress and we can’t have him aspirate so we have to be very careful about his oral feeds. He needs to gain strength and stamina with his oral feeds. We will also be spacing out his night time feeds to try to help his tummy stretch, they say if he goes longer without eating at night, he should eat better during the day so we will see how that plays out as we adopt that and adjust his schedule.

Prayer for the rest of us, we have all struggled in some ways. Bo & I together in marriage have had our bumps, each of the kids as they have quickly become much more independent out of necessity and haven’t had the same amount of attention they were used to, continued health for all 6 of us. We are a bit needy right now but we are handling it well for the most part and improving each day. I’m keeping up on more and more stuff around the house (weekly now, not daily anymore and it’s with help) as well as starting to eek in a bit of school for the kids here and there, having more fun with them and hopefully I’ll be able to get some more sleep in the near future too which will help a ton.

Baby David who I mentioned is still in the hospital waiting for a heart transplant. He is still in critical condition and needs prayers and a transplant. Please keep him in your prayers.

My family (cousins) are planning the funeral for my uncle, my whole family could use some prayers as they walk that out.

Thank you for walking this out with us, for standing with us in prayer, continuing to check on us and wait with us as we prepare for Gideons next surgery. The cardiologist is hopeful that our next surgery will have a quicker hospital turnaround time with a longer recovery time. Gideon will be much bigger and stronger to withstand the next surgery so it should be much easier for us to manage our hospital time next time with our 3 big boys at home and I have ideas for how we can make it easier on all of us next time. Just knowing that it’s coming and it not being a total shocker will be a big help. We will keep you posted about needs and how you can help if you desire to as the time arrives.

Blessings to you all!
Kari

Today is a big day! Gideon is 6 weeks post operative from his first heart surgery! That means his “sternal precautions” are lifted today and we can start with more therapy to start building muscle strength and control. We can now lift and hold him normally (which I am still terrified to do knowing his sternum is wired shut internally) and he can have tummy time to start developing some neck muscles so he will be able to hold his head up eventually. I’m very excited for that!

His scar has healed beautifully as you can see below. We still have the NG tube and probably will for a while. We are trying to transition away and only use it at night now but I found out today we need to spend another day up at Seattle Children’s for a swallow study for him. He started on reflux medication tonight which most cardiac babies get but they want to do a study to make sure he isn’t aspirating any of what he is taking in because he doesn’t eat quite right.

He decided today would be a bit of a backwards day with his sleep schedule. Bo and I have always sleep trained our kids from very young and had planned to with Gideon as well but that all went right out the window when he had to have emergency heart surgery. Until we got on the hospital schedule and were sent home with a schedule for him for eating and awake time, etc and it’s exactly the sleep training schedule we have always done so it was perfect! His doctor and cardiologist and the whole team at the hospital all recommended what we had originally planned to do and started him on that schedule before we even left the hospital. Today was one of those days he decided he didn’t like the schedule and wanted to do his own thing. Not a huge ordeal but he still needs to eat a lot and rest a lot and gain weight so we have to minimize how upset he gets and for how long. We are not the ‘cry it out’ type of parents anyways for the most part but really can’t be that way with Gideon because it burns too many calories and he can lose weight from crying. Boy, wouldn’t that be nice sometimes? Lol. Between his night time feeding schedule and his brothers growing pains lately during the night, mama hasn’t slept for a while and had hoped to nap during nap time today. I always put all 4 boys down at the same time so I can make phone calls then or schedule appointments or get stuff done or just rest if I can and had planned to rest today but Gideon had other plans. He was quite happy when I brought him in my bed with me but he still didn’t sleep.

Elijah and his brothers  love this guy so much, it’s the sweetest thing ever. Gosh I wish I had more time and energy during the day to spend more time with each of my other kiddos, they are so awesome (usually) and often take a back seat to me tending to Gideon. They never complain directly about it or seem to be upset at Gideon for it though they may act out in different ways as a result of it. I understand where it’s comjng from, I’m just not very graceful about it. I can work on that.

Prayers: weight gain and excellent eating skills! He really needs to progress with his oral feeds as we follow the plan to get rid of the ng tube and gain strength and control before his next surgery.

Please also pray for rest. Especially for him and I. He can have some funny breathing when he sleeps which will cause him to stir and causes me anxiety because I just lay and listen to it since he’s only 2 feet from my bed. He needs rest to grow and I need rest to regain sanity, I certainly don’t need to grow!

He did a big poop tonight so we don’t need prayers for that one right now!

Please also pray for our insurance coverage. Because of his cardiac condition, he is required to get some special vaccines that cost just over $10,000.00 each and insurance has denied them. We have 2 more to get and he can’t get them at Seattle Children’s because they only administer them to in patient status patients so they want payment at the infusion clinic when we go in this week. Our doctor is appealing on our behalf and hopefully that’s all it will take to get insurance to change their mind and cover the shots but the next appointment is this week so they need to figure it out quickly.

Thank you, thank you, thank you, love you and God bless!

 

Well, I don’t really have an update for you but this picture was just too cute not to share. This was as I was getting Gideon ready for bed tonight.

We have completely changed his feeds and he no longer uses the tube at all during the day which is great. He breastfeeds during the day and gets topped off with a bottle a couple times  per day to get the extra calories and protein from the fortified  milk as well as have more practice with a bottle. He isn’t as proficient at the bottle yet and they hope he improves since that will give him a better chance of not having to get the NG tube replaced after his next surgery if we are able to get it taken out before it which is our goal. He is still gaining weight but it has slowed down which we expected since he was getting double feeds for the past 2 weeks.

We have therapy tomorrow and see the cardiologist next week for our official initial visit with him as well as a repeat echo cardiogram. The cardiologist we will be seeing is who diagnosed Gideon at the hospital at birth, one of the partners of who we had chosen originally but we haven’t been able to see him yet.  We are excited for our initial visit with him, he seems like a pretty awesome man who is very straightforward and honest and even chuckled on the phone with me when we spoke last week making sure I told Bo “hi” as they have developed a relationship already from the few hours they spent together in the NICU when Gideon was born, it was funny.

That’s about it for now. Prayers are for Gideon to keep gaining weight, have ease when trying to poop, and his physical therapy. We are going to start working on his neck muscles as he has no head control because he hasn’t been allowed to have any tummy time yet due to his sternotomy which has also caused torticollis (twisted neck – he only looks to 1 direction) which then resulted in him getting a flat head. We are praying tummy time and physical therapy will fix all of those things but prayers would certainly help as well!

I don’t have many details but baby David who I asked for prayer for still needs prayer. Apparently he needs to gain quite a bit of weight to be eligible for a heart transplant so that’s what the prayer is for him right now.

My family (mom & dad, aunts & uncles, cousins,) could still use prayers as we all grieve the death of my uncle.

All  in all, we are doing well! We are still getting a routine down of the day to day stuff, we look forward to returning to co-op and church soon as Gideon gets stronger, he is still a bit too small/weak to wear in the ergo but I have a carrier I can wear him in now and now that I don’t have to use the pump to feed him during the day it’s even less daunting to think about taking him out and about with me. He is still very scheduled which the doctors prefer, they don’t want him awake too long, they don’t want him to fussy, etc because he can’t afford to burn extra calories so we have to try to keep him on his schedule to the best of our ability and I’m so type A, it would give me anxiety to deviate from that. Hahaha. We appreciate your prayers, support, encouragement, meals, money, everything. We have been so blessed in so many ways by you all through all of this, we are SO thankful for all of your help. The meal train doesn’t have any dates on it beyond this month but I’m hoping to keep that one open to add to it later as we prepare for Gideons next surgery. The “big” surgery will likely take place in June or July but it all depends on his weight gain and his cardiac output over the next couple of months as well as the pulmonary band he has on. Now that we have an idea of how surgery and recovery time will go, we can plan better for next time to set us up for success rather than being thrown in the deep end and trying not to sink like we were this first time around. We certainly have some ideas of how we can make it easier on the kids and Bo and I as well and accept the help you all so willingly give to us. We are so appreciative! Thank you! I can’t say it enough!

Blessings,
Kari

It was a big day for Gideon and mama. He didn’t pass his newborn hearing screening so we had to schedule a 3 hour hearing test that we had at Children’s today. 3 hours. Wow.

Here is your funny for this story: I get anxiety going to Children’s. When I get anxiety, I have what my ex co-worker calls “bad belly bart”… you can imagine what that means. I was  prepared for it and went potty 1 last time as we walked out the door around 7am for our 9am appointment. We did not make it to the hospital  before “bad belly bart” struck again. I was in dire emergency mode so I had to pull over to anyplace I could find which happened to be some sort of small construction business. Not  like a retail type of place, this was more of almost a construction trailer but bigger than that. I was DESPERATE. Really, really desperate. With sweat on my brow and tears in my eyes I screech to a hault in the parking lot,  grab Gideons car seat and blast through the front doors panting in the office startling the dozen or so male only workers in the office. Clearly I was in quite a panic and they asked what I needed. I begged desperately for them to let me use any restroom. I think they were so shocked they escorted me to the tiny little, dingy ladies room downstairs in a dark hallway. I threw Gideon on the floor outside the stall (he was still in his car seat), use the restroom and thank them immensely as I slink back down the hall and up the stairs doing what feels like the walk of shame and we head for the hospital.

We finally got checked in for our appointment, started our morning routine of 9am meds & feeding and got him hooked up for his 3 hour test. The audiologist told me that if he behaves well, the test could potentially be done in 1 hour if he sleeps good. I thought he did fantastic. Apparently I was wrong. I didn’t realize that over 1/2 of the time of the test, it was paused because of muscle movements. I didn’t know that even little eye flutters  registered as muscle movement and he never really got into a deep sleep so most of the test was spent paused and rewinding to start portions over again to check different frequencies. We started in his right ear. At 11am, I asked how it was going since it had been 2 hours and we were still working on his right ear. She said she had completed 3 of the 4 tests for that ear and we would likely be able to finish it. What about the left I asked? She said we would have to reschedule another time to come back for that because we weren’t going to have time today. Seriously?!?! I had held him in my arms (he was only on the bed when we got him set up for the test) for almost 2 hours in a very uncomfortable chair basically holding my breath trying to encourage him to sleep and we weren’t even 1/2 way done and going to have to come back again?!!? UGHHHHHH. Big, fat, bummer.

I told her if there was any way to get at least part of the left ear tested I would prefer that so we know if he has any hearing in that ear because it is questionable. The preliminary, incomplete test results for the right ear were fantastic. He does have some hearing loss but he is pretty close to the normal range and should have no problem hearing people speak and communicate so he will learn proper speech and language based off of that result. She worked on the left ear for almost an hour and wasn’t able to test anything as she couldn’t get a baseline of his brain waves for that test. She did 2 other tests, 1 to test his ear drums and their vibration and neither ear drum vibrated (that’s bad news) and an echo test to test the echo back from the cochlea and neither ear had the echo they are supposed to have either (also bad news). So we got some not so great news of no ear drum vibration and no cochlear echo as well as having to retest again in 2 months when his ear canals are a little bigger and hopefully they have more success with the test and we have to see the ENT doctor prior to the next appointment as well to check for fluid behind the ear drums. Shuzzbutt. The good news: He can hear! Pretty well out of the right ear, that’s encouraging.

After audiology, we got to go see our friend Rae, his occupational therapist. We did feeding therapy and she confirmed his great progression with breastfeeding which was encouraging. She also confirmed  his lack of progress with bottle feeding which we knew, she gave us some pointers as to how we can try to improve that. She is hopeful that we can get rid of his NG tube prior to the next surgery and if that happens, we have a higher likelihood of not having to get it put back in after his next surgery. But he needs to be very proficient with breast and bottle feeding because he won’t be able to breastfeed immediately following his next surgery and may only be able to bottle feed if he does good at it with no respiratory distress or extra work of breathing which right now, he has quite a bit of both when he bottle feeds.

THEN he decided to go to sleep… after both of our appointments before it was time to go home. Silly boy. We went to the pharmacy to pick up his refill of cardiac medication but they had made an error with it and had to re-make it for us so we went to visit our favorite nurse from recovery, Miss Danielle. She is just the sweetest thing and was so excited to see how big he has grown. I will definitely be requesting her specifically when we get back to recovery after our next surgery.

It was finally time to head home. We arrived home around 3pm, just in time for Gideons supper feeding. I had planned to take myself out to lunch today but never had the chance. Note to self: when planning a whole day at Childrens, EAT BREAKFAST and PACK A LUNCH! Oops.

I received word that my Uncle died while I was on my way home, my mothers brother. Mom & dad were at the house watching the big boys so I was in a big hurry to get home, give mom a hug and let them go to have some peace to start processing. Uncle Ed & mom were very close and communicated everyday. Please pray for my mom, my cousins Eddie & Heidi, they have now lost both of their parents and my moms 2 sisters and 2 other brothers. This will be a challenging time for all of them.

By the time I got home, my migraine was in full swing and I was choking back barf. I haven’t had one that bad in a long time. I said bye to my parents, laid down on the floor with Gideon, let Elijah & Moses play on electronics and prayed for Bo to get home from work quickly and fell asleep. Yep, mother of the year, lay down with my newborn on the floor and fall asleep. I know Bo was on his way home so it wouldn’t have been too long and Solomon was still napping in his crib, the other kids were entertained so it should  have been sort of, almost safe. Bo got home about an hour later and promptly sent me to bed. He even brought me up some food and water knowing I hadn’t eaten yet today. Then a dear friend brought a delicious dinner from  our meal train which has saved my butt SO MUCH since we’ve been home. I often feel bad that we are still receiving meals from people because today marks 3 weeks since we got home and I feel like I should have it all together by now but my goodness, these meals are so amazing and the next biggest help to playing with the big boys for me.  It’s awesome and I’m so thankful people are so generous and willing to help us out in this way. When we aren’t eating the meals that get delivered from the meal train 3 nights per week, we are eating the freezer meals that were prepared for us. We have been so blessed by all of you. I just got up to make a plate, say goodnight to the kids, get Gideon situated, eat my dinner in bed, go take a shower, pump & go back to sleep for the night. My parents rocked it with the big boys today while I was gone and Bo rocked it with all 4 of them tonight while I was sick in bed. Looking forward to some great rest tonight and a good weekend.

We haven’t scheduled our next appointments yet. I’ll do that next week so we can see ENT and try the hearing tests again in 2 months when his ears have grown a bit and will fit the equipment a little better and hopefully he will sleep for them better next time.

THANK YOU again for the prayers. Please pray for my mom (Pam), her sisters & brothers & my cousins as they process the death of my uncle.

Please also pray for clearing up of possible congestion in Gideon’s ears. They aren’t sure that’s what it is, it’s a possible cause for the lack of vibration and and echo in his ears and for easy testing next time around.

Praise for his continued growth, progress with breastfeeding, and that we had a successful day away today. It may not have been pretty but we made it and I’m so thankful for that.

And the standing prayer I suppose I should just keep on the list: guess who needs to poop? Yep, we’re overdue again and his tummy is bothering him. I’ll crack a can of prune juice for him tomorrow. Or maybe just make my own since I have prunes…

One more request, Gideon gets night time congestion.  We aren’t sure why. I’ve started suctioning him before bed and end up having to suction once throughout the night as well. They think it may be reflux but he sleeps on a wedge which is supposed to prevent that and he has never spit up, not even once. I thought maybe it was from the ceiling fan so I shut that off and it hasn’t made a difference. I thought it could be the heater so I closed the vent and that didn’t help, I’ve had the diffuser on and off and neither seem to make a difference either. But he ends up having respiratory difficulty and we both hate suctioning (I use the ‘Nasa Kleen’ similar to the nose frieda) because the bulb syringe makes him bleed and the electric snot sucker isn’t effective so that one works. But I would love for him to have respiratory ease from tip of his nose to the bases of his lungs so please pray for clear airways all the way down all night long.

THANK YOU!

P.S. My migraine is feeling much better. Now I just have a normal headache so I should be better by morning. I’ll try to drink a gallon of water tonight and not pee the bed :) LOL (yes, that was totally a joke, there will be no peeing the bed).

I thought I was doing ok. Serioulsy. Yes, we have our challenges with bringing home a 4th baby from the hospital to our already chaotic, noisy home and yes, we have some additional work to do since he is a special needs baby who also has congenital heart disease and is post op from his first heart surgery. But, I thought I had it sort of together and was doing well.

I was wrong.

Bo even asked me the other morning (a week or so ago) how I was doing emotionally and hormonally. If I felt like my hormones were evening out after giving birth 6 weeeks ago and felt like my emotions were calming down some since I’ve cried pretty much everyday since Gideon was born. Sometimes it’s tears of joy, but it’s some form of tears everyday and I never used to be a ‘crier’ at all. Apparently Bo noticed maybe I was not quite ok and was checking in on me and I had no idea. I just thought I was fine and doing well. Then I had a massive emotional break. A big one. It was not pretty. For a couple of days. Then funny things started happening…….

Funny #1 – Gideon has 2 ports at the end of his NG tube where we can administer meds or plug him in for a feeding. The 2 holes at the bottom of the below picture are the 2 ports. The 2 plastic nubs on the right and left are the plugs. This is what his NG tube looks like if both ports are wide open. You NEVER want to see it look this way. Ever. (that means stomach contents would be coming back out through the ports if they weren’t plugged. ick.)

In this picture below, both ports are plugged. Who of my medical friends knows what this orange thingamajig on top of the plug is?

The orange thingamajig is not a plug. It’s an extra piece of nothing that’s attached to the top of the plug. I have NO IDEA why. .The nurses at the hospital had no idea either. It’s almost like a funnel. you can see right through it because there is a hole in it, it’s not closed so it won’t plug the port although it looks a bit like a plug.

So, back to funny story #1 – Gideon had lunch the other day. He breastfed then followed up with an NG tube feed as was required at the time. When he is done with his tube feed, I disconnect him from his feeding pump, flush the line with distilled water and plug the port. I did all of that. Then I laid him on the floor for a bit while I went to put something away. I came back 1-2 minutes later and picked him up. I noticed there was milk on the floor. Shoot. He has never, ever thrown up or spit up at all. Not once. I thought it was strange that may have been the first time but I know he’s been getting too much to eat. I was holding him and walking around and my pants got wet. Down the front. I had no idea how, I couldn’t have peed my pants down the front of my thigh, could I? Hmm… I wondered. But I was wearing black pants and the wetness was white milk. Crap. Is Gideon STILL spitting up? Though nothing was coming out of his face. I keep walking around, my shirt gets soaked. Did I really just milk through my bra and my shirt right after feeding him!?!?! Seriously!?! How does that happen!?!? I hold Gideon away from my body to see if I’m soaking him too wondering how so much milk is pouring out of my body in so many places as to wet the floor, down the front of my pants and my entire shirt as well and I see it running from the end of his NG tube. The NG tube that I flushed and plugged. With the orange thingamajig that is not a plug. DANG IT!!!!!!!!!!!!!!!! He just lost his whole lunch because my head is screwed on sideways. Oops. Sorry buddy.

Funny #2 – 15 minutes after funny story #1, I lay Gideon down to change him and get him ready for a nap. As always, I pre-load the diaper under him before I undo the diaper that’s on him. I’ve learned. That’s not gonna happen again. I’m a smart mama now finally that I’ve made it to boy #4. So I pre-load the clean diaper, take off the wet diaper, clean hip up and fasten the clean diaper. But it won’t stick shut. The velcro sticky side pieces are all messed up and not working right. It took me at least 5 minutes struggling with the diaper to FINALLY get it on him. I’ve never had such a hard time with a diaper in my life. It just wouldn’t work. But I struggled and struggled and struggled and finally got it on. Took a look at him………. the diaper was on backwards. Really. The sticky tabs were fastened in the back. Yep. No wonder I had a hard time with it. Wow. Is my head even attached? (I’m using disposable diapers, not even cloth!)

Funny #3 – Fast forward to the next day. I’m cutting back on his NG tube feeds because I know he is getting way too much food. Now I need to get pre & post breastfeeding weights to ensure he is actually getting milk from me when he breasfeeds and that’s the only way to do it. Weigh him before he eats then again after and see how much he took in. But I don’t have a baby scale… I only have a food scale. That should work! I throw the bowl on top of the food scale because I figure it will steady the broiler pan I stacked on top of it and evenly distribute the weight. Throw a blanket on it so it’s comfortable and zero it out. Put the baby on the scale. Error. Take the baby off. 0. Put him back on. Error. Take him back off. 0. Put  him back on. Error. Take him back off. You can see where this goes….. I finally use my own weight to learn that the scale only goes up to 5 lbs. Gideon weighs more than 5 lbs. This won’t work. Dang it!!!!!!

Brilliant idea #2 for weighing him. Get  my scale! I have a digital scale that I use everyday and I can use that to weigh him! Bring it downstairs, put it on the counter, throw the blanket on it, throw the baby on top of that. Nothing. Nada. Take him off, put him back on, nothing. Try 1 more time. Realize he is too light to engage the scale so I decide that I can hold him to get his pre and post weights. Yes, you know where this story is going, I did not know that then. I put the scale on the floor, hold Gideon, stand on the scale. CHECK! I have his pre breasfeeding weight. We sit on the couch, he eats for 10-15 minutes while I’m googling away ‘how many milliliters in a pound’ so I can break down the weight from pounds on the scale to milliliters so I can figure out if he still needs to get food from the NG tube when he’s done. I googled pounds to ounces, milliliters, kilograms, on and on it went. Then we got back on the scale. Together. After he ate. For real. This actually happened. I’m not writing comedy. I’m writing what actually happened in my home, to me, in real life.

I’ve now got a hold of an actual infant scale so I can get somewhat of an idea but it’s not as accurate as the hospital scales so I’ll use it more to just track his overall weight rather than pre & post breasfeed weights.
My funnies have made me realize that I have scrambled eggs for brains right now and maybe I’m not handling it all as well as I thought I was? I don’t feel like I’ve completely lost all my marbles but maybe that’s just part of losing your marbles, is that you don’t know when they are gone? LOL. I have no idea. It is pretty gosh darn funny though. I’m shocked I can tell these stories about myself because, just wow. I’m thankful that I can laugh at them with you though so you’re not all just laughing at my expense, I can join you in it! :)

Maybe I should have a personal prayer request for my own mental and emotional health and brain function? :)

Pray for poop please! We are way late for a poop…..

SO MUCH I have to write. So little time to write. Hopefully I can make some time soon to fill you all in on some funny stories, maybe even a quick video too. But for now, I’ll just leave this picture here.  Yes, this is Gideon on a scale. Yes, the scale reads over 7 lbs. Yes, it’s pretty accurate although he is wearing socks, a diaper and a t shirt. He is also very overdue for a big poop.

We made some big changes to his feeding schedule so please pray for continued weight gain (though it should slow significantly now) and for a poop. For Gideon. Lol 😂

I hope to post much more soon! It’s a crazy, wild ride with 4 boys but we are so blessed by God! I’ll be back as soon as I can!

Please also pray for a baby named David in Texas. I don’t know his details yet other than he was just born, 4-6 weeks early and is on the transplant list for a new heart.

Thank you! ❤️

Oh goodness, the stories I have to share. I have some funny ones for you. I just don’t have the energy or brain cells left to do it right now. You will laugh if and when I get the chance to write them out for you though. As for now, Gideon appears to be doing great. He has grown out of his preemie clothes, his color is great, and his oral feeds are improving greatly. His fingers and toes still get cold from time to time but they don’t turn purple at all anymore which is a good sign. We have therapy on Monday and a 3 hour audiology appointment on Thursday with more therapy Thursday following that appointment up at Seattle Children’s. I look forward to seeing his in patient occupational therapist again on Thursday, she’s such a sweet gal. We are settling into a decent routine here during the week when Bo is gone at work and doing well. We haven’t returned to church or co op yet and probably won’t for a bit still. He still has “sternal precautions” so we have to be extra careful how we pick him up, hold him & move him. He isn’t safe to be worn in the carrier I have yet and I don’t want to just have him exposed holding him out in the open if we go to those places. Not until his sternal precautions are removed in a week and his sternotomy scar closes up in the last 2 tiny spots that have scabs still.

Prayers: Good results at the audiology appointment. We have to have this appointment because he failed one of his newborn hearing screens so we are praying for better results from this more extensive test they are doing. Also for peace for that outing. I’ll be taking him alone to Children’s and spending a decent amount of time there so I don’t want to get anxious about his eating/sleeping schedule that we are supposed to keep or using his food pump throughout the day or transporting him. I need to remember to put the stroller in my van so I can just push him around to our different appointments!

For his feeding plan. Things are changing and I haven’t been able to get clarity from his care team about what to do from here.  We need to make more changes so I’m basically winging it on my own right now doing what I feel is best for him but would like clarity and confirmation from his team that I’m doing the right thing. We are so excited to see his cardiologist again to get all our questions answered and establish care with him officially but that’s not for a few more weeks so hopefully someone at his office can give us some direction while we wait.

That’s about it for now. I have lots more pictures and stories to share when I make the time. Thank you for following along and praying and encouraging us along this journey! We appreciate all of the help we are getting, it really does help us out immensely.

God bless!

Kari

Today was our first day home alone with just me and the 4 kiddos. Yesterday Bo was at work but the big 2 boys had a play date at Nana & Poppis house so I had an easy first day. We had visits from my sister and a friend scheduled today which both had to be cancelled due to sickness (not on our part), dinner & household help were both cancelled due to sickness as well which worked out great, I made one of the freezer meals we were blessed with and had the kids help get more laundry put away today so at least you can see our large couch now LOL. I actually feel like we pretty much rocked it today. The kids were fed, Gideon was cared for, that’s about it. For now, that’s about all that matters so I consider that a win! We didn’t get any school work done but I don’t care at all. We certainly need to work on more grace throughout the day but I think our exercise game on the xbox will help quite a bit once I figure out how to navigate through the menus to get the kids the challenges they want to participate in and run their little hearts out in front of the tv. To me, it looks about equivalent of a P90x workout but it’s probably not that difficult since it’s rated E for everyone,  I’m just not a workout person so I get winded just watching from the couch pushing buttons on the controller so the kids can exercise more. Hahaha.

We had a home health nurse visit today, I had no idea what to expect and had hoped she would bring a scale and she did. In 6 days, Gideon has gained 11 oz!  That’s just over 300 grams! That’s HUGE! When I changed him after we weighed him, I tried to put on the preemie jammies my mother in law just bought for him and couldn’t even come close to pulling them up all the way. They fit him just 3 days ago when he wore them last! Such a good boy! Eating well, sleeping well and getting fat! Speaking of which, I need to go plug him in to have his late night dinner before his midnight snack and his early morning breakfast before real breakfast in the morning so I have to get!

We haven’t had a poop yet today, need one of those. (Gideon… ha ha). Prayers for more peace and grace at home throughout the day as we continue to figure this out! THANK YOU so much for the prayers, encouragement and support! I would also love some more prayer for his feeding progress. I feel like we aren’t  making a ton of progress yet he did take 40 ml by bottle today which is the most he’s ever taken before so that’s encouraging. I thought we would have progressed more than that by now but he still gets so tired eating from the bottle or breastfeeding. I’m not sure how long it’s supposed to take for him to get so proficient at those that it’s not hard, exhausting work for him to do. So we could use some prayers for feeding. We have therapy scheduled on Monday so maybe we’ll get a better idea then of what to expect moving forward. Again, thank you so much! Blessings!

Just a quick update tonight. Prayer requests: Please pray for health. For Solomon most right now. He’s fighting a couple things and needs to be healed! Please also pray for protection for the rest of us (especially Elijah) to remain healthy! Gideon needs to poop again. LOL. He’s loudly working it out right now and seems quite uncomfortable so hopefully he poops quickly and can get to sleep and rest well throughout the night.

Gideon is doing great. His belly button stump FINALLY fell off after way too many days. It was quite disgusting and really did smell awful but we were told repeatedly not to put anything on it or touch it at all no matter how bad it got.  ICK. I may or may not have obeyed doctors orders on that one. But it’s gone now and he’s got the cutest little swirly belly button just like his brothers. He seems chubby to me so I believe he’s gaining weight but hasn’t been weighed for 4 days so I can’t confirm that. I’m considering getting out my food scale and trying to find a way to balance him on it just to see, though I don’t think I need to do that, it would just be for fun because he is filling out nicely. His skin looks better and better and he is getting some meat on his ribs so his retractions are minimizing which is nice. Medically, he seems to be doing great. He just needs to keep gaining weight and staying stable to get strong and healthy and prepare for his big heart surgery in a couple of months.

His brothers love him so much, it is the sweetest thing ever. They just dote on him and talk to him and show him their toys, they can’t wait until he is a bit bigger and stronger and can play with them. Until then, they will lay down and talk to him and show him their cars and want to drive them over his head, lol.

The power went out here the other day. When we saw it was planned to be at least a 12 hour outage overnight, we decided to pack up and head out. His feeding pump does have a battery and we actually have a backup pump just in case but the breast pump I use to make his milk has to be plugged in to be used and I didn’t want to sit in the van with a converter to pump in there when I needed to and it would get pretty cold in the house with absolutely no heat when it was only 20 degrees outside so we crashed my parents house. The 3 big boys all shared a room and slept great, I wish they would do that at home! My dad kept the big boys quiet in the morning after I told them they could have silent reading time when they woke up, he quickly put the kibosh on that when they stopped being silent and he told them to go back to sleep. I don’t think any of them went back to sleep but they sure were quiet. That was nice! Mom got some snuggles in with Gideon while I drew up his meds and breakfast so that was nice for me to not have to rush as well because he was content being snuggled.

We were gifted this awesome co sleeper that I wanted to bad so he could have his own safe space to sleep in right up against our bed. Before he was born, we had no idea we would be having this first surgery, that he wouldn’t be able to exclusively breastfeed and have a feeding pump, etc so we planned on him just living in our room with us until after his “big” surgery and recovery when we felt comfortable with him going in the crib in the nursery. The wedge he has to sleep on didn’t fit in the co sleeper though so Bo cut it down and now we can use this and keep him up off of the floor where he had been. Of course he doesn’t give a tiny rats behind where he sleeps but I feel better with him being up off the floor and in a crib. It’s not at my bedside exactly since he has to be plugged into an outlet for his feeding pump but it’s perfect and I love it and am so thankful we  have the opportunity to use it now!

I saw the sun shining outside this morning and was so excited to send the boys out back to play. Then I looked in the backyard and it is just a huge pile of slush from the melting snow and didn’t want to send them out in 30 degrees in a foot of slush. So we bought an xbox game instead. Some workout game for the kinect that the kids can challenge each other at workout exercises. Squats, push ups, running, I’m not even sure what all is in there but they stayed busy for quite a while today exercising to the game from the tv. I’m assuming they will be sore in the morning from all the exercise they got today, I’m so thankful for that! This will probably become a daily game for us and hopefully I’ll get the motivation to get off my butt and join in the fun because I can use the exercise too! We do need to work on their form with squats and push ups. :)

This is typical for feeding time for Gideon. Because of his condition, he is extremely scheduled and calculated. I don’t have to weigh his diapers now that we’re out of the hospital but we calculate every ml that goes into him (except for breastfeeding bonuses since he doesn’t get a ton from that yet) but he is very scheduled and required to eat every 3 hours during the day regardless of whether he’s hungry or even awake! Lunch for him is at 1200 and this was him at about 1206 after I tried to wake him to eat. Starving? Not so much…….

I figure if I un-swaddle him and lay him out under the ceiling fan maybe he’ll wake up… Nope, still a no go. Bummer for our lunch time routine but I’m thankful he is getting plenty to eat and isn’t starving.

Thanks for following along with us! Oh, tomorrow will be my first day home alone without Bo here. The big boys may get some time to go play at my parents house which would  make it an easy day for me, please pray they stay healthy and can have a play date with them! I had a friend who was going to come over and have her older kids play with the boys but with Solomon fighting sickness and her kids just getting over sickness we decided it was best if we don’t mix them all together. Ok, it’s way past my bedtime. Blessings to you all!