Don't worry, nothing too serious, but just wanted to give you an update. Dominic has continued to have issues with his sodium levels which is frustrating to be sure, we are trying to figure out how much to be feeding him now that he has a g-tube. He got to the point where his sodium levels dropped dangerously low and he was becoming dehydrated. To rectify the problem we have added more fluids and also have tested his sodium levels more often (this requires getting blood from the veins in his head since they are not succeeding in his arms and legs, poor baby). We are hoping to get that all under control before I take him home. The most stressful issue right now is that the weaning off of the narcotics is not going too well resulting in hours, and I do mean hours , of him screaming and again, being inconsolable. He hardly sleeps and again, I cannot console him, nobody can. The nurses will take him for a time, but they end up bringing him back again, you can tell it wears on them too. Last night I just lay with him and prayed while he screamed, trying to offer it up, I am not doing too well with that lately, I am tired. I am trying to figure out how we as a family will take care of him when he is home. This weaning process is going to have to go a lot slower than I imagined and I am not sure how the children, or how Mark and I will handle the stress. He will need a lot of around the clock care when he is home with his pic line (I am getting trained in on how to work with that) and his feeding/sodium levels. I guess I am feeling a bit overwhelmed about it all.
I have a plane ticket home on Monday evening and then we will have appointments at Children's the next morning to make sure he is stable. If he is not stable he will need to be admitted, at least we will be close to home.
Again, I am desperately missing the baby I once knew. I know I shouldn't "go there" emotionally and that if I look at the big picture I can see the surgery had to be done, but if I could live in an imaginary world I never would have handed off my baby to them, I would have kept him exactly the way he was. The day we handed him off to them for his surgery I thought I would faint, my legs were like two wet noodles and so weak. I was so afraid that we would lose the child we knew, I was so afraid that somehow, with what they would do to the brain, that it would damage it somehow or drastically change his personality. I am still hopeful that after Dominic is fully weaned off of the meds that he may come back completely, but I worry about how the children will handle this huge change. There is definitely a sense of mourning already for the children because his face has changed, but to not have his sweet personality there is just so difficult. I ask for prayers for our family as we all go through this transition. Can you little children especially pray that we can get the icky medicine out of Dominic so he can be happy again? You are his little prayer army and I know God hears your prayers.
I was struck by the meditation for the year of faith today. It spoke about David and his attitude towards suffering, something to learn from for sure.
"Refusing his bodyguard' request for revenge, David gladly accepts rocks and insults as just punishments from God. What dependence on the Lord! Whether in good times or bad, whether appearing as the most active of agents or passive of penitents, David interprets each moment as an opportunity to accept everything from God in faith as a priceless gift.
Fr. Lawrence Donohoo, Magnificat Year of Faith
As always, thank you for the prayers!
A blog to keep you up to date on Dominic's progress. Thank you so much for praying for Dominic and our family!
Oh Mary. Remember that David was also human and frail at times. Part of a strengthening of faith comes when it's tested. It does not mean being "perfect" in our response all the time. Remember that Jesus spoke of the two brothers? HOw one was so willing right off the bat to do the Father's will ...but didn't do it? And the second was hesitant and said he would not... but in the end he DID do the Father's will? The second was more pleasing, remember? It was not because he had a "perfect" or "flawless" response of faith. He knew that responding to the Father's desires is sometimes not in line with our OWN desires. We all feel like this at times. Yet... reluctance to do what is asked of us in carrying our crosses is something even Jesus struggled with in the Garden. It is truly the love for our Children (and our Father) that ultimately leads us to embrace our crosses and walk forward... even if stumbling. You have done this. You have continued forward. You will continue to and so with this beautiful Son of yours. He will get better.
ReplyDeleteRemember... two steps forward, one step back. Today you may be taking a step back, but don't forget what you've learned and how much of an effect this medicine can have on his personality. He's uncomfortable and in pain and so he shows it. But he's not silent. He's not silent.
He will get better. I just know it. And I know this must be so incredibly tiring for you all, but that's why we'll continue to pray.
And as for how you will handle it when he gets home? You will do it the same way you did it before and with each child. One day... one moment at a time. My prayers.
Don't ever hesitate in asking for prayers, Mary. This is our way of helping since we can't be there in person. So we at least are there in spirit! If we were all there, we would all take turns in holding Dominic, whether he screamed or not. :-)
ReplyDeleteWe will pray that Dominic goes through this withdrawal a little more easily--it will be okay, we will get through this hump too.
I can't even imagine what you are going through, Mary. I'm certain few people can. But you are becoming stronger every day, whether you know or not, and your strength and faith in God will get you through the days of head. It's hard to imagine, I'm sure, that God feels you are strong enough for all this, but just keep the faith and you will find your escape.
ReplyDelete"But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.” Mt 19:26
I was thinking exactly what Becky said, don't ever worry about asking for prayers, we all wait to hear from you and want to pray for you all. My kids ask every day how Dominic is and we will pray for those ickies to go away quickly.
ReplyDeleteAll this is good to happen now, instead of when you get home, it is best to be taken care of now at the hospital, instead of going home and it not being taken care of.
I just know you will all see the Dominic you first fell in love with.
I do know that feeling of handing off your child and then, when they are in pain, feeling like (at least for me) like I've tricked him in some way, like I so wish I didn't have to do it. I was looking at pictures of the past year (and we went no where and did nothing except take care of Simeon, and pump of course) but I looked at the painful times, his face taped up and thought the same thought again, the "I'm so sorry baby" and even questioning what God really wanted from us to do. We are doing it. You are too.
This past surgery, (the kidney one) we also had him circumcised, because of all the catheters and less chance of infections this way, and they found that, I guess with cleft babies, it is common, since cleft is central to the body--in the center of the body all the way down, that his "little boy part"'s hole was underneath it and down a little....so they fixed that. AND that was what actually hurt him the most, still, He finally, as of yesterday is not crying when we change him (I change him) He would cry every time he peed or pooped and hold his body away from ours, just inconsolable pain. So hard.
I just went into that, not to take away any from you, but to let you know, that I understand on a very small scale compared to you and what you are going through. You are a blessing to all. Dominic is a blessing to all. He is going to do great things. You, like our Mother Mary, will be there, silently suffering, as this prepares him for those great things.
God bless you, we'll be praying constantly.
Thank you for asking for prayers and for the specifics of intentions to pray for. Be assured that we will pray for Dominic's sodium levels, an easing of withdrawal symptoms, for strength for your exhausted self and for your family to be able to cope with this hard phase and all the change. I pray too that you will have an excellent support team and hands on help for your family upon your return home.
ReplyDeleteYour little Dominic's true self is in there it is just hidden right now by medication and withdrawal symptoms. Give yourself room to meltdown occasionally (or frequently!) - this is a very hard time for you. It is so hard to see our babies in pain and not be able to fix it. Relentless crying is also stressful and hard to bear.
We will all continue to pray for all of you and these intentions. Even though we don't know each other I can say that I and many others are in love with this adorable baby! I will pass these prayer requests to others.
We are praying, rest assured of that, and know that we will include the specific requests. There is nothing too big or too small to ask for!
ReplyDeleteLove and prayers!
Continuing to pray you home. I think it's difficult to learn how to manage a chronic health problem in the beginning. We all have our unique body chemistry. That's been my personal experience. Anyway, you just keep taking it minute by minute, and I'll keep praying.
ReplyDeleteBad times don't last forever; it just seems that way at times.
Lena
Just leave the praying to us if you're tired.
ReplyDeleteHappy New Year to you all.
ReplyDeleteChristmas Miracle (check)
Loving parents and siblings (check)
Amazing progress (check)
Time to go home (real soon)
We have been praying for you all and will happily continue to do so.
We are praying for you to get some rest and everything you tell us sounds overwhelming. You are so special, you and your family. Lucky Dominic, God chose you all (The Gundrum Family) to be his family. You all are so amazing. God will grace you all with your needs.
So much love and continued prayers.
Love,
The Bone Family
Praying for you.
ReplyDeleteThis is really, really hard--but you can do this. You don't know what is around the corner, but it is going to be okay.
ReplyDeleteI spent so much time worrying in the hospital about what life would be like when we got my sick baby home--but the worries didn't come true.
First, you are in for a treat. Even if you can only get Dominic home for one night--it's like taking an infant to Disney world. He is going to be so excited to be home. It's stunning to see how much he misses home and how much better he feels just being back there.
Second, you are tired. You're in a hospital far from home. Even if you're back at Children's, you'll be Milwaukee (right?) or Chicago. Your closer to home. Which means more people can come see you. YOUR MOM can come see you. How much better are you going to feel when she can come hold your hand--or hold your screaming baby?
Finally--I know this sounds crazy--but Praise God for screaming. Screaming is good. Screaming is a normal, healthy response to surgery pain. He's healing. He's healthy. He's got some energy in his little body. It's the Silent, passive stuff that really means Death is close. It's scary how quiet that NICU hospital floor is--those babies aren't crying or screaming mostly because they are so very, very sick.
One tired foot in front of the other. Better days are coming!
Wish I could be there to throw a ticker tape parade when you guys walk off that NICU floor. Make sure to snap a picture. You're smile is going to be priceless.
I know this discharge isn't the end of the road--but it is a BIG hurdle! Good job Dominic Pio. Keep healing, baby!