I arrived this morning to find Par just waking up--and with an NJ tube in his nose. It was upsetting--I was all prepared to patiently give Par is 12pm bottle feed--I just knew he was going to do well--and here I see they have already placed the feeding tube. I was very discouraged and a little confused--I thought they would wait a little longer. The nurse practicioner came by and spoke to me at length about about the placement of the tube. She explained that the sooner he is off his nourishment via IV drip--the sooner we are out of here. Plus, it is important that they get him up to full feeds--hopefully by the end of the week. The good news is, I can still keep on giving him a bottle and working on breastfeeding as long as he is alert, awake and interested. This calmed my heart and actually took the pressure off.
The nurse practioner also gave us some other not so good news--Par needs a blood transfusion because in layman's terms, he is anemic. We've avoided this until now--and I sort of thought we were past things like this since we left NICU 3--but CDH babies don't go by any sort of rules--so I don't know why I'm surprised. He should get the transfusion tonight--and hopefully he'll feel like a new baby tomorrow.
On a happier note, the OT/Lactation consultant met with me this afternoon and talked to me at length about what I can expect from Par (she has experience with plenty of CDH babies). After we talked, she watched Par try and breastfeed and then helped with positioning and such. It is very hard because I have to be careful of his wires/IV-- so I can't do what feels natural immediately because I have to check that it won't hurt him--so with her help, we could get into a position quicker while he was still interested. He did latch on for a little while--but he needs lots of practice because of all the tubes he's had in his mouth, he has forgotton some of the things he is supposed to know how to do. She showed me some things I can do with Par to help him "practice" and she is going to meet with me again tomorrow during one of his awake/alert times.
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When I bottle fed Par this evening, he ate like a champ! I was so proud of him. I am praying that Par will continue to progress in feeding with a bottle and with nursing. I know that patience is important--we continue to seek the Lord's timing for Par's recovery.
Par's friends are still in NICU3--we are still praying for the healing of their little bodies. We ask that you will continue to lift them up in prayer.
Much Love,
Rusty, Liz & Par
11 comments:
I am so glad to hear that today was a better day!! Maybe the anemia just made him feel yucky and, therefore, not so hungry. Or maybe he simply misses Grandma! I hope tomorrow is an even better day!!
Love and prayers,
Zandra
Rusty, i got the web address from aunt Bonnie. Your baby is beautiful! We will continue to pray for and your family. We also hope all goes well , sorry we won't see you at christmas so merry christmas , tell your wife and son hello for me. Love you, Kimberly
good morning liz,rusty,and par.I am so glad that par ate such a good bottle,i am sad to hear that he needs a transfusion,what is that for anyway,i was so happy to hear that he latched on for a little bit and hopefully he will be able to latch on and breastfeed the natural way that he is supposed to,although the feeding tube is in at least he will get to still try to nurse and bottle feed,i was glad to see that the one bottle was almost gone, that to me was reassuring to see,it is amazing to me how much i feel so attached to this story and to you all, i check on you all everyday,love and kisses to all of you.
It is a beautiful clear crisp morning here on the coast.Each day we look at your news. We continue to pray for your strength and good humor. This morning I am on my way to MUSC where I have the priviledge of 'holding babies' in the NICU. Your family is being prayed for in more places than you can imagine.
Cheryl and Chauncey
I hope you all have a good day today. We are praying for Par to eat/nurse well and to feel better after his transfusion. Hang in there...God is going to plan everything just right.
We love ya'll, and once again, appreciate your sharing this experience with us.
always - leslee and the basingers
What great news. Par will be nursing before to long. Don't get discouraged. Sometimes baby steps are hard for us to take but God knows the direction we need to take. Be blessed today. Love and miss each of you. Jim and Sheila
Liz Don't get discouraged! Rest in the Lord, HE will give you strength. You and Rusty are doing such an amazing job at being Par's parents. Things will get better. He will begin to eat (maybe anemia has him too tired). Keep working on breastfeeding. Again it took both of mine at least a week and they were full term and did not have the same obstacles to overcome. I am praying for God's blessings on the three of you today. Love Allison
Dear Rusty and Liz,
I met Rusty's cousin at Chick-Fil-A in Asheboro last week. Long story short we started talking and I shared with her that in 2002 my son was born with a diaphragmatic hernia. She passed along your info and asked me to get in touch with you. My son Chas is now 5 years old and the only reminder we have of his difficult beginning is the scar on his abdomen. I know you guys have a long journey ahead of you. Please continue to be strong in your faith and the Lord will be with you.
Congratulations of the birth of Par. You have a handsome baby boy!
Shannon McCrary
Liz - I haven't posted until now, but I read your update every day. You, Rusty and Par have been in my thoughts very often. I wanted to let you know that my sweet little Claire, who is now 6 months, had to have a blood transfusion at 5 weeks. After it was over, it did seem to make her feel much better. I hope that the same will be true for your sweet Par. Thanks for sharing your journey and we are so grateful that Par continues to progress every day.
Christy Roddy
Liz-
I have been reading your updates daily, and I love seeing little Par's pictures. He is so alert and seems like such a happy baby, despite all he has been through. I am so amazed by your strength--you are a wonderful mom. I hope Par continues to improve so that you can be back in Birmingham soon. There are lots of little boys here (Will included) who can't wait for another playmate.
Kate (Venable) Mather
Rusty & Liz, I was at a prayer meeting with a women from church and was telling her about Par. It turns out she knows Jean and has been praying for Par for the past few months! This woman is a mighty prayer warrier and I just wanted to remind you that so many people are praying for Par and he is thought about constantly. We love you all very much!
Kelly&Josh
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