Tips for Parents (and loved ones) of the Hospitalized Child

Tips for Parents and Loved Ones of the Hospitalized Child

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I feel I now have a bit of experience with my child being hospitalized-for both planned surgeries, NICU, and unexpected sicknesses including 3 hospitalizations for sicknesses (PICU, regular rooms) for aspiration pneumonia once, flu and pneumonia for 7 week total, and an almost 2 week stay in PICU and regular rooms for RSV as well as a tonsillectomy at age 2. So I would like to share some helpful hints for both parents AND for family, friends, visitors, pastors, etc, from the perspective of a parent. 🙂

Pictures of Ethan's 3 hospitalizations: top left, from birth to almost 3 weeks in NICU for duodenal atresia, top right from CVICU after heart surgery to repair his AV Canal Defect, bottom picture from stay at PICU after getting the flu.

Pictures of Ethan’s 3 hospitalizations: top left, from birth to almost 3 weeks in NICU for duodenal atresia, top right from CVICU after heart surgery to repair his AV Canal Defect, bottom picture from stay at PICU after getting the flu.

FOR THE PARENT

1)BEFORE you take your child to the hospital, remember that there is no shame in being sent home if your child is not in crisis, BUT if in your gut you feel like something is worse or not right, take your child in! Things can go from bad to worse quickly, and you want that to happen at the ER, NOT at home!

2) If you have a scheduled surgery coming up, ask questions. There is no dumb question. Be an advocate and find out what risks come prior to the surgery. (For example, if your kiddo has a congenital heart defect, find out if you should limit their exposure to others, and find out to what extent you should do so.)

3) Take friends up on their offers to get food, let your dog out, etc. They want to help, or they wouldn’t have asked. And not taking offers for help doesn’t make you super mom or super dad, either. Depending on how your child is doing, you may even want to have a parent spend the night at the hospital while you get rest at home/a family member’s home. You need to be well rested for your child, and trust God and the medical staff to hold down the fort. You can always call for updates and ask your “sub” to call you with updates. (I know this can be hard for some parents, but I promise it does NOT make you a bad parent. )

4) Chances are, a lot of people are going to want to know how your little one (or teen or young adult !) is doing. Instead of wearing yourself out by texting everyone you ever met, ask a grandparent or sibling to take care of updating people outside immediate famiy so you can talk to medical staff and be with your child. That being said, allow yourself breaks to talk to friends or get on facebook, etc. if that is what will help you keep your sanity.

5) Ask your child’s treatment team questions. If you feel your questions are not being answered, or they are making you feel like you are a burden for wanting to know what is going on with your child, that is NOT ok. Most hospitals, especially children’s hospitals, are designed to include parent participation and it is your RIGHT to know your child’s health information. At our child’s hospital, there is even a system in place to notify a special Medical Emergency Team if you feel your child is worsening, but either the staff is unavailable or is ignoring your concerns. Find out when your child is admitted what these phone numbers are rather than waiting for this situation to happen to you.

Getting bp checked during hospitalization for RSV at age of 19 months

Getting bp checked during hospitalization for RSV at age of 19 months

6) Even if your child is sedated, talk to your child. He/she will be able to hear your voice and will be comforting, or at the very least, they will feel your presence. It will do you some good, too.

7) Limit visitors at your child’s bedside and be mindful about the amount of time there is a lot of noise, touching, and other stimulation. They need their rest, and the nurses are probably not going to be telling you “that’s enough for today.” Be your child’s advocate, even if you have to hurt some feelings without meaning to.

8) Talk to your child’s staff to find out how at risk for infection he/she is. If there is a risk, you have to discern if you feel comfortable with allowing others besides parents back to see your child. Again, the staff won’t be likely to tell you “I wouldn’t let many people back.” If you think its a risk and feel uncomfortable, just tell people why you are limiting visitors (in a nice way of course.) They should understand, but if they don’t…your child’s health is way more important than enduring an awkward moment or two.

9) Be there for your baby even when you aren’t really there. For when youIf you have a hospitalized baby, and you cannot stay overnight (such as in many NICUs), ask if you can tape-record your voice reading a book or singing so your baby will get to hear your voice and be calmed. I bought one of those voice recordable books from Barnes and Noble. Hallmark makes a few, too. I asked family who was there when I wasn’t to play the book for Ethan so he could hear my voice. Some hospitals have special toys with fibers that hold onto your smell if you “wear” the stuffed animal/cloth for awhile. (I think this is especially important for those newborns who are just starting to bond with mommy and daddy.)

10) Be informed on the effects of hospitalization. If your child will be hospitalized for more than a few days, pay attention to how your child is positioned. If your child is staying in the same position, ask your nurse if repositioning is possible. It may not be possible, and in this case, consulting with hospital therapists or outpatient therapists/pediatrician during and after hospitalization may be helpful, especially if your child is young and still is developing head and trunk balance, rolling over, or forming head shape (under 1 yr old.)

Our child seemed to have a preference to only look to the left and roll to the left after his 3 week stay as a newborn at NICU. He now wears a helmet for plagiocephaly (flat spot that can be corrected in the first year) that seems to have been caused by his directional preference. In the NICU, we all visited him on the same side of the bed because that is where you could lift the cords, and that is where the chair was located. This may or may not be able to be prevented, but it is worth asking your child’s treatment team.

Ethan in his helmet

Ethan in his helmet

11)If your child is hospitalized immediately after birth, don’t delay questions about circumcision, and ask more than one person! We nearly were not able to get our son circumcised because we only asked one person, and there was misunderstanding about when it would be “too late” to get it done. We were told the pediatrician would do this procedure following discharge from the hospital; however, the pediatrician said he would have liked the hospital to handle this since he was so young at that point. For circumcision, younger is better.

There is a certain point that baby boy’s nerves in their penis cannot tolerate circumcisions as well, and our pediatrician would not have done it if our son had not been premature. (Although he was 3 weeks old, he was gestationally younger, so his nerves were still not too sensitive..) The pediatrician told us that he was not willing to put our son under for the procedure because circumcision would not be considered medically necessary, and therefore sedation was an unnecessary risk.

8 Months Old sleeping in PICU

8 Months Old sleeping in PICU


Playing on his nabi jr In pre op room

Playing on his nabi jr In pre op room

FOR THE FRIENDS/FAMILY

1) It is most helpful to the parents to give a very specific offer: such as “tell me a day I can bring you supper”, “Can I help babysit your older kids? If so, tell me a time you need help..?” If you just say “let me know what I can help with”, that is nice, but it requires the parent to be in an awkward situation of contacting you and asking for help, and it creates more time and mental effort that the parents most likely do not have at the moment.

2) Be sure to feel out the visitors policy and the wishes of the parents before you head up to the hospital. Different parents and different medical situations may call for correspondence only. Having a large volume of visitors may be wearing on the parents and make them feel they are not getting to stay by the bedside enough and are missing the doctors rounding. (Doctors do not always round at predictable times, and this was important for us to attend.) But as I said, find out from a family member of the parents what their wishes are before you head up there.

3) Parents do want support, and you can do this other ways than being there in person if they have asked for no visitors or limited visitors. You can send letters, emails, and facebook posts. You can send snack baskets, balloons, and stuffed animals. If you have a life group/Bible study, etc, coordinating who will notify the larger group would simplify things, and you could even coordinate who will bring what meals on which day.

4) If the parents ask you to not come visit, don’t take it personally. The parents appreciate your support, but they only have so much time to spend with visitors and may not want any at all if things are hectic.

5) Pray for them, and let them know you are praying.

By Natalie aka Ethan’s Mommy

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Ethan’s first 9 Months and what they have taught us

This has certainly been an eventful 9 months..

Months 1-5 months

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Holding mommy and daddy's hands in NICU after surgery to repair duodenal atresia

Holding mommy and daddy’s hands in NICU after surgery to repair duodenal atresia

July-December:Ethan came a few weeks early and had a surgery and was given a Down Syndrome diagnosis, we took him home, and he had a heart surgery in December. We were worried Ethan wouldn’t be out by his first Christmas, but he was only there a week! All these prayers we have prayed and others have prayed have really shown through to the staff and people we tell Ethan’s story to! We adjusted to having a baby with Down Syndrome and what this might mean for our future. We learned that some of the stereotypes we didn’t even realize we had weren’t true.

First look at my little love after a successful heart surgery. Praise the Lord!

First look at my little love after a successful heart surgery. Praise the Lord!

Showing off his new heart surgery scar and "Chicks Dig Scars" helmet stickers.

Showing off his new heart surgery scar and “Chicks Dig Scars” helmet stickers.

my two loves

my two loves

Got milk?

Got milk?

7 months old

7 months old

January-February: Ethan was put on a waiting list for starting developmental preschool while I sought out and got a full-time position as an outpatient therapist. (Up until then I was working part-time at a similar place, and I was with Ethan on my 3 weekdays off.) Ryan started working weekends so he could be with Ethan during the days, and then a spot opened up at Ethan’s school. So he started getting therapies at the school and had a great time there. I just cried and cried because I wanted to be at home with Ethan. My sweet husband planned a surprise “Mommy-Son” date and made a nice supper. He even dressed in a suit and waited on me and Ethan! (Even though Ethan just had a bottle. 😉 )

Spiffed up for the mommy/son date

Spiffed up for the mommy/son date

Ethan giving me his letter about the mommy/son date (My husband it the best. :) )

Ethan giving me his letter about the mommy/son date (My husband it the best. 🙂 )

February-present: Ethan got very sick with pneumonia, then flu and had to be hospitalized for over 5 weeks. Never understood how bad flu could really get. It was quite wearing, physically and emotionally. It was so, so hard to see Ethan asleep and be unable to talk to him.

sleeping ethan in PICU

sleeping ethan in PICU


It was hard to see his health status progress only to see it dip and worsen again hours later. This whole ordeal has helped us learned how to be more patient. It has helped us to enjoy all the tiny things-the diaper changes, finding Ethan awake when it’s really his bedtime, washing his hair to remove the helmet grime, strapping Ethan into his car set, and even mixing bottles (as Ryan said here It has helped us to make the most out of situations, instead of lamenting about them. Today, for example, is Easter as I’m writing this post. I really had hoped and prayed Ethan would be out for his first Easter-if anything, to have a certain day in mind that he would be at home, finally. That dream did not happen, exactly, BUT Ethan is now on a regular floor where we can hold him, he can play, and he is continually improving. So today for Easter, we brought an Easter basket to Ethan and took some family pictures in the hospital. He was getting tired, so we took them with him in the bed. This wasn’t how we imagined his first Easter, but it was still our little family giving thanks for God giving us a second chance at life, at redemption from our sins. Complaining about still being in the hospital wouldn’t have added anything to our lives-it would have taken away the joy we are called to count this experience, and every experience.

Ryan holding Ethan for the first time in over 5 weeks

Ryan holding Ethan for the first time in over 5 weeks

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"He is risen-He is risen indeed!" The Easter message, brought to you by baby Ethan :)

“He is risen-He is risen indeed!” The Easter message, brought to you by baby Ethan 🙂

He was ready for his Easter basket! "Gimme!"

He was ready for his Easter basket! “Gimme!”

The family photo ended up by the bedside because Ethan was getting worn out! We can be flexible. ;)

The family photo ended up by the bedside because Ethan was getting worn out! We can be flexible. 😉

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.” James 1:2

I have through these hospitalizations how to also trust God in a way I have never had to before. At times is was quite scary. The glory that brought to God to watch Him come through for us was very tangible and exciting, though. I think we appreciate our son so, so much. We enjoy being at home so, so much and don’t complain usually if we don’t have plans because we think “heck-at least we aren’t at the hospital!”

I am going to be honest- I am only human. Of course, there are times when I get sad and feel cheated that we spent the first 3 weeks of Ethan’s life in NICU, a week in CVICU, and a whopping 5 plus weeks at PICU and a regular unit. I hold him and feel like it was deja-vu from a dream of holding him and think “This should not feel so foreign, to hold my son.” But it did at first. I still sometimes think “Wow..my son has Down Syndrome. What does that mean for my family? What else are we going to face?” Those thoughts are only fleeting though, because my hope is in the Lord, and I’m reminded He has given us a precious miracle named Ethan to love. Then I think, “We’ve got this. Me, Ryan, Ethan..God’s got us.”

Ethan is delayed, but we are still going to have those sweet moments, whenever they end up happening. He has had to backtrack on some development from being hospitalized, but he will catch up. No rush.

Reading Hungry Caterpillar in his Bumbo seat

Reading Hungry Caterpillar in his Bumbo seat

We still are waiting to see him sit up on his own and crawl. It does make me feel funny at times to see other babies already sitting up and so forth and I think “What? That baby is already doing that, they’re so young!!” Ethan’s developmental delays have also helped us to learn to be patient and appreciate the smallest of advances. Maybe its a strange sort of gift, though…like our souls have learned to quit driving all over the busy city and sit on a porch, sipping cocoa and watching the sunset. Life is hard, but it is also to be enjoyed and reflected upon. This is what we are learning.

After reflecting, it is fun to look to the times ahead, though…

Now comes more fun…planning Ethan’s 1 yr old birthday party, Father’s and Mother’s Day (feel so old when I think about those!), taking spring pictures, playing outside, and watching Ethan make a mess in his high chair with new foods! I know we aren’t supposed to have a sigh of relief because life is always going to have trials…but we are gonna party just for getting done with this hospital stay!

Praise on Easter

Praise The Risen Lord

Natalie and I have struggled these past few weeks and warred with anger over our circumstances. We have been angry, sad, happy, stressed, fearful, and many many more emotions. We have struggled with distrust of God, we have struggled with anger at God, and at times anger in general. It seems unfair that Ethan has had bowel surgery not even 24 hours after birth then in the NICU for 3 weeks; Open Heart surgery and in the CVICU for 1 week; and now the Flu intubated (on a ventilator) for 4 weeks with a total stay in PICU for 4 and half weeks.

All these things have caused me to lash out at God, fall flat on my face, and get up swinging time and again. This is the response that I have when things don’t go as I expect. Even in the worst of it all I was reminded that while yes things are bad it could always be worse, much much worse. We could have lost Ethan. We could have been deprived of the experience of feeling God’s sovereign hand in the events leading up to Ethan’s life, we could have missed out on all the encouragement, love, kindness, and grace from all the family, friends, and even people we don’t even know. We could have missed out or been overlooked by God in experiencing the blessing that Ethan has been to our family. We could have missed out on so much more than we ever could have imagined.

We hate the pain that Ethan has had to go through. As a Father I look on the events of Easter with a new perspective. I have seen my child suffer. I have seen my precious, perfect, innocent child suffer pain, sickness, and hurt that I couldn’t and can’t take away. How much more was the pain of God looking down on Jesus as His precious, innocent, perfect, sinless child was beaten, flesh ripped from bone, mutilated, spat on, and mocked for hours. How God had to sit back watching Jesus slowly, agonizingly walk the hill to his death. With the weight of the world, and the cross on his shoulder. To watch his perfect, sinless son become sin so that I don’t have to take the blame for my sin. I don’t have to take the punishment for my sin all because God WATCHED His son die, and at the last moment when His son was hurting the worst, dying, God had to turn away because in that moment God’s son became our sin. How much worse is our Father’s pain in seeing this? I ask myself this all the time. Everytime I mess up, every time I fall flat on my face, every time I lash out in anger, every time I fail to see God’s hand at work, every time I turn away from an opportunity to share Jesus and what he did I am reminded that God watched from afar the mutilation of his son. He watched so I can boldly approach His throne and be heard.

What arrogance I have to think I have a right to anything, let alone to feel sorry for myself or anger at God for what has happened!

I don’t say any of this to beat myself up, rather this is my turning point, this is my reflection. This is what keeps me zeroed in on God’s plan for my life. I have a better understanding of what God my Father has been through in seeing His Son suffer, and this helps me understand that God doesn’t want me to suffer. That even though yes this is a hard time, it is a hard time that is bringing glory to Him! My words run dry when I reflect back on what some would characterize as “The absolute worst thing that could happen” and see it as the most amazing and beneficial thing to my life, and marriage.

God has taken what some see as a travesty and turned it to the deepest blessing that I have ever experienced. Yes it hurts walking through the fire, but when you are on the other side you look back and see the sea of gold you passed through to get to the other side. I am so blessed. I can not express in words what all this experience means to me. Through all this I have seen my precious boy’s life touch so many that I don’t even know. I get messages on occasion from people I have met years ago, or friends I don’t even know. Natalie and I prayed that Ethan’s life would be used to touch others, we had no idea that this is what God intended, but we would not change a thing.

I don’t believe that things just happen. There is a reason for everything, there is a reason for Ethan’s tough and at times painful life. I am blessed to get to love him through it. I am blessed to see the love in his eyes, and the joy in his heart. Natalie and I are beyond blessed with our boy.

Ethan continues to do well. He has gone from near death, please make no mistake there were times when I was scared that Ethan was not going to make it through this and times that he nearly didn’t, to a somewhat rapid road to recovery. We are most likely just days away from getting to go home. Ethan is on 1/2 liter of oxygen which is next to nothing. He is getting a swallow study done tomorrow to evaluate whether he can start bottle feeding, and are weaning his ativan and methadone to off once all this happens we are almost home!!!! So hopefully just a few days left!

Please pray that Ethan can come off his oxygen in the next day or two, and passes his swallow evaluation tomorrow.

Please pray for restful nights for Ethan and us at the hospital. Ethan was up all night last night and Natalie got 0 sleep. So please pray that he starts sleeping through the night again.

Lord,

I am sorry for my arrogance, I am sorry for my sin, and I am sorry for my anger. Father please continue to use Natalie, Me, and Ethan to bring glory and honor to your name. Let us be used by you. There is no greater purpose or feeling than being chosen to serve you. Lord I thank you for the sacrifice you allowed your Son to make some 2000ish years ago. Thank you for that sacrifice and thank you for that love you have shown. I am beyond grateful and hope that my life will in some way make you happy!

Thank you so much for all you have done for my family. You truly are an ever faithful God!

By: Ryan aka Ethan’s Daddy