A Day in the Life…

A day in the life of our Poppy…I got to thinking this may be interesting to some, probably boring to others, but whatevs…here goes..

The yellow tube you see coming from Poppy’s nose is a feeding tube. Hers is going to her duodenum (small intestine). She receives 24 oz of formula this way every day. She is on ‘continuous’ feeds, meaning she gets about 1 oz every hour. She also receives all of her meds this way. She has this tube because she has spent all of her life in a hospital, very sick and intubated (on a ventilator), and she never had the chance to master a suck and swallow. She had also lost the small amount of suck she did have before she got her vp shunt for hydrocephalus. Praise the Lord, her suck, among other things, came back almost immediately after her shunt was placed!! We are now working on this during our ‘Binky training,’ where we hook up a small syringe full of formula to a passy and she is able to practice her suck and swallow in a controlled way. The concern of just giving her a bottle and hoping for the best, is that she could potentially inhale the excess milk she is unable to swallow, and that could be life threatening. This is why it will be a slow and steady process of working her up to taking more and more volume through her mouth. Obviously the goal is to get to a point where she is able to take enough nutrition by mouth to grow- until then, she will have some kind of feeding tube, whether it be this same set up, or a g-tube that hooks directly into the stomach.

The unique haircut you see is from Poppy’s vp shunt surgery. The little bump and tubing you see beneath her scalp down the side of her neck is her strata vp shunt. Her vp shunt is used to treat acquired hydrocephalus as a result of brain bleeds during her time on bypass and ECMO. Her shunt is reprogrammable from the outside by magnets. Hence, no magnetic toys, iPad cases, old cell phones, or MRIs without it needing to be reprogrammed. This shunt controls the amount of spinal fluid in her brain ventricles, and drains the excess to an area around her stomach. Shunt malfunction can be fairly common with this type of shunt, so we are to watch her neurological state closely. It is amazing what a difference this shunt has made as far as Poppy’s neurological development- thank you Jesus for thorough docs at SCH!!

The black toe you see on her left foot is dead because of a clot she threw during her original Norwood procedure. It is set to come off in September.

The rounded face and luxurious head of hair you see on our girl, that seemingly came on overnight is from the prednisone and cyclosporine she is on for anti rejection. She is weaning the prednisone now, and should be off of it by August. The cyclosporine is forever- so my girl will have great hair…always!! Lol (I’m a hairstylist) 😉

A Day for Poppy:

6am: The mother load for her medications. In her case, her continuous feeds must be turned off a half hour before her 6am, 2pm, and 10pm for proper absorption of her anti rejection meds, and stay off a half hour after meds are given. She receives the most at this time. She gets 3 anti rejection meds (cyclosporine, cellcept/MMF, and prednisone), her sedation we are weaning (dilauded/hydromorphone), blood pressure/heart meds (verapamil and captopril), a diuretic (diuril), anti seizure med (keppra), magnesium, Zantac, probiotic (culturelle), blood thinner (lovenox-it’s a shot AND undoubtedly the worst part of my day), anti-yeast treatment for all the meds she’s on (nystatin) one for mouth the other a diaper ointment, and on M,W,F a med that fights bacterial infections (bactrim).

Get ready for the day

Nap

At 10am she receives her sedation (dilauded) and yeast prevention (nystatin).

Somewhere in here we work on binky training and strengthening her arms, legs, and neck.

Nap

2pm it’s time for anti rejection meds again (cyclosporine, cellcept/MMF)- this time she takes a viral fighting med (valcyte) instead of prednisone. She also gets her heart meds (verapamil and captopril), her sedation (dilauded), as well as her yeast prevention (nystatin).

Nap

Somewhere in here we work on binky training again, do a bath, and play.

At 6pm she gets her shot again :(, her anti seizure med (keppra), her diuretic (diuril), her sedation (dilauded), her magnesium, probiotic (culturelle) and Zantac.

Read books with big brother, Crosby.

Bedtime

10pm rolls around with anti rejection meds again, much like 2pm minus the valcyte.

2am she gets her sedation (dilauded).

And then another day begins….lol

I do want to add that these anti rejection meds are nasty- 3 of them (cyclosporine, cellcept/MMF, and valcyte) are considered ‘hazardous’ and gloves are recommended to be worn when handling. This also means her waste is ‘hazardous’-it’s crazy. The very thing my baby needs to help her body not reject what’s keeping her alive is so hazardous that birth defects can occur if one is pregnant and the hazardous meds are not handled properly-it’s just crazy…these particular meds also HAVE to be ON TIME, EVERY TIME. It’s daunting, but if late more than a few times, it’s possible to see changes in rejection scores- meaning rejection could result- these medications are soo crucial it is insane.

These anti rejection medications work by depressing the immune system to keep the body from fighting this new foreign object (her heart). Because she is being hit so hard with anti rejection meds, we are strongly advised to be selective with visitors, therefore we have limited it to only family- non sick family members at that. It’s just a big deal and after a few months Poppy will be further out from transplant and on fewer meds-then we will be able to be out and about more. Right now we are at home or at clinic or on a walk.

At some point while she is sleeping, I take her vitals using a stethoscope: heart rate, respiratory rate (how many breaths she takes in a minute) and a temperature. We are blessed in that because Poppy is now allowed to have oxygen saturation at 100% (with her old heart the goal was 75-85%), and she has been SATing 100% since her new heart, we were not sent home with an O2 saturation monitor. One less thing to check…I also record when and what her diapers are, and same for any vomiting.

I draw up all of her meds 24 hours ahead of time. Because they CANNOT be late, this helps me to insure they are always ready. If we are at clinic and meds are due, they need to be ready for me to give them. I make her special formula (Elecare) once a day and keep it in the fridge for when her bag is empty, and pack it with ice packs to insure it stays fresh in this hot weather.

Rejection is something for which Poppy will always be watched closely. Many of the signs can be typical things such as ‘flu like symptoms,’ sudden weight gain, a trending temperature of just 1 degree higher than her normal, a heart rate of 10 beats per minute higher or lower than her normal, and the list goes on. These are just the things we as parents are watching for, the doctors are doing specific echocardiograms (ultrasounds of the heart), EKGs, and labs all twice per week right now this fresh out of transplant. They take the results of each and plug it into a formula to produce a rejection score. Many, many factors are considered before they treat for rejection. Treating rejection can entail hospitalization on IV steroids, and /or an increase of anti rejection medications at home. Rejection is typically well treated if caught in time, if not, obviously it can be fatal.

So far, Poppy has shown no signs of rejection-praise The Lord!! However, her heart is thick- it always has been. She is on a couple heart medications to treat this right now, and will likely continue for a good while. Apparently this can be common in transplanted babies due to the time during the transplant when the heart had no profusion. It can cause the heart to become ‘stiff.’ Ideally, her heart would start to loose its thickness as it relaxes into her system. Because her heart has always been this way, they aren’t concerned for rejection. However, had her heart not started out thick and had became thick, they would call it rejection. Please pray that her heart starts to lose its thickness-the docs would expect to see this happen here in the next couple of months. She also has some tricuspid valve regurgitation, which was also an issue with her old heart. Because she has a normal heart now, (a heart with 2 ventricles instead of 1), and a normal tricuspid valve it isn’t as huge of a deal, but please pray it would be reduced to mild from moderate, as this is something they are also watching.

We have been told to expect to stick around the Seattle area for a few more months, until Poppy’s drug levels stabilize and her appointments out here go to once a month. Obviously I will not be able to return to work, due to Poppy’s extra needs. This means I get to be a full time momma and nurse to my babies, wife to my hub, and I am honestly delighted!! I have always wanted to be a stay at home mom- thank you Jesus for a dream come true!!! I know it won’t be easy- in fact, it’ll probably be the hardest thing I ever do, but I feel so blessed to get to do it. 🙂 I pray I never take it for granted- I pray I cherish every moment…

We truly have so much to be thankful for- she is really doing very well, despite the cold she caught somehow? You can also pray for that to be over! 😉 But really, she’s doing great 🙂 Hallelujah!!!

We have a number of friends who are in great need of prayer:

Adrian- HLHS waiting for a heart (SCH)
Michael- HLHS waiting for a heart (SCH)
Elizabeth-HLHS waiting for a heart (SCH)
Joe- HLHS is having a really rough time
recovering from his heart
transplant (SCH)
Wyatt- HLHS is fighting an infection
around his heart after his Glenn
(in Edmonton)
Livia- post op from open heart surgery
(SCH)
Tucker-post op from open heart
surgery (SCH)
Oskar- goes in for mitral valve
replacement and possibly his
Glenn tomorrow (SCH)
Kyle, Victoria (HLHS), and Christian- having a rough interstage (time between first and second surgeries for single ventricle) and need to grow and be healthy for their Glenn (SCH)

*HLHS is the diagnosis Poppy had-there is lots of variance within the diagnosis. The others have unique diagnosis, most of them though, are single ventricles as well.

Thank you all for praying. God is here-your prayers are deeply felt and cherished.
.

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14 thoughts on “A Day in the Life…

  1. You children are so Beautiful and your so blessed to be a stay at home Mommy. Your Kids will value this for a lifetime. I will keep Poppy and your family in my prayers. Everything will be fine as time goes by. Poppy has wonderful Parents and a Loving Big Brother, so what more can she need. God is really in Love with her to heal her this way and blessed her with a new heart to live with. So she will be with this earth for her life. God Bless you and keep you strong Mommy, your amazing with the schedule of all her meds and feedings. XOXO

  2. How wonderful it is to see updates on Poppy’s progress! I pray that God continues to grant you the strength to maintain her routine day to day, month to month. What a precious beautiful little girl she is! I’m keeping you all in my prayers and I send hugs from this Montana grandma! Thank you for sharing your lives with all of us “out here” in Montana! I truly care so much!

  3. Hi Christie ,Brad and the two little ‘dollies’
    I was exhausted reading your update……I understand why we have kids when we r young…..:)…..but you have a day that most people couldn’t imagine, let alone live. God bless you ….God surely has given you strength in so any ways…. Your love for the Lord has brought you thru so much…..and will continue everyday…..Our prayers are with you all…..you are loved Melodee and Max

  4. I love reading Poppy’s updates! I am so glad she is doing well. I heard about Poppy Through Kyle’s family and my 3 year old daughter fell in love with her (it was a picture in the hospital with a flower on her head). Both my 3 year old and 6 year old still ask about baby Poppy and her sick heart when ever I am looking at Baby Kyle updates. Thank you for sharing your beautiful family and touching story with us! You are in our prayers as well as the other babies you mentioned!!
    The Steger Family

  5. Despite your crazy down to the minute schedule… you both (Christie and Brad) are looking absolutely fabulous. Poppy’s progress amazes me everyday. And, I am very jealous of her hair!! Keep up the good work! Thank you for sharing. Your story is an inspiration to so many.

  6. Thank you for this post. I often wonder how things are going and this is a good glimpse into your life. I do pray for Poppy and will be keeping your friends in my prayers as well. God bless. I wish I could help out some way. Try to get some sleep.

  7. You are absolutely amazing parents and God is working miracles through you!! To go through all of this with the faith and courage you have is an eye opener to so many of us that take our own daily struggles for granted!! Poppy you are so beautiful steroids and all!! I pray everything your beautiful family needs will be rewarded one way or another!!! Denese Moritz Calahan

  8. Wow! You two have so much on your plate, but it sounds like you have it under control! Thank God you are young! Poppy is so very lucky to have all 3 of you. God knew who to give Poppy to. I love hearing about how it is going and seeing the pictures. Please don’t stop! I know it takes a lot of time, but so many people love Poppy. It is amazing how strong she is! Praise God! Prayers keep coming your way and I am so proud how strong you guys are and you all look great!

  9. You and your family are such an inspiration to me. Sweet Poppy has endured so much, yet she is a strong little girl. I woke up this morning ranting at my family for leaving messes and yelling because I had to do laundry again. After I read your post, I can honestly say that feel like scum. The grace you exhibit and your admiration for the little things is so encouraging. You are truly a Godly woman and thank you for setting the bar high for high for stay at home moms like me who get disillusioned with the daily grind of everyday life. I am so blessed and I need to be more thankful. Thank you for reminding of that. God is so good! I pray for Poppy all the time and I pray for your lovely family as well.

  10. You are doing a wonderful job of being a parent, with a difficult and heavy load of responsibilities. Good work, both of you, and to Crosby for being an involved big brother! You are our poster mother for FCS!! 🙂

  11. God bless you and what you guys do! As an Emengecy Room Nurse my head is spinning with all the meds she is on! My gosh, you get an honorary degree in my book. Prayers to you all. Love hearing the Poppy stories:)

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