OK, I'm officially having a very rough day and I'm not handling this very well. If you don't like attending pity parties, then you might want to skip this post!
It's day 11, and I never thought we'd still be here, let alone seemingly so far from going home! Esther has made little to no progress today, and the pediatrician on duty is about as sensitive as a rock.
She's doing about the same at every feed - bottle for around 20 - 25 cc's (sometimes less), then tube feeding for the rest. I've been running behind on milk production now that's she's taking in 65 cc's per feeding, so we've had to add anywhere from 40 - 10 cc's of formula to each feeding - while this isn't the end of the world, I do feel like I'm under pressure to get enough milk for her and I think this is taking it's toll on me.
The pediatrician seems to delight in finding things wrong with Esther that would prevent her from going home - it seems to actually make him happy! The nurse and I were talking with him about how sensitive she is to position - if she's held correctly or positioned correctly in bed, her oxygen levels are wonderful, but if placed on her tummy or her back isn't straight, she can't breath well and her oxygen level goes down - sometimes really fast. He turned to me with a big smile (like I knew there was something I could find to rule out her going home anytime soon) and says to me "she'll never go home with a pulse-ox" (a pulse-ox is a light that shines through the foot or hand and registers her pulse and her oxygen level) and then something about how difficult they are to use/read/manage. He even patted me on the back like he was congratulating me! I was speachless - I'm thinking "what do you mean 'she'll never go home' - that is the most insensitive words a doctor could ever say to a mom - even if he did qualify it. He didn't even follow up with any reasurrance of any kind - just waltzed out of our little cubicle and started his report on Esther, while I sit here trying to feed her and keep my sanity.
You know, I have eyes in my head, I've mothered 10 children and none of them have died on my watch - I have some idea of when my baby is in distress! You know, technology is only so good - so many times that readout has said she's in serious stress, while she is laying in my arms, perfectly pink, breathing regularly, and is in no way in any stress - nothing replaces human observation or mother's intuition!
I just feel so down right now - I have only had one visit today from our pastor, and that was wonderful - but I feel so alone! It's been days since I've had any friends come to visit and I'm just feeling so out of touch with reality.
I haven't spent more than a few minutes per day with my husband in over a week, haven't darkened the door of my home in 8 days, haven't slept more than 4 hours at any given day in about 7 months, and I'm not supposed to use the phone in the nursery.
Today we started trying to do some skin to skin with Esther to help my hormones, but she just doesn't do well in any position the enables skin to skin - basically it's nearly impossible for me to cuddle with her!
If you waded through my misery here, please pray the God will lift my spirits, give me the grace to continue on here. I've been trying so hard to not look past today, to just concentrate on doing what I need to do for Esther, but right now I feel like there is no end in site and I'm no sure how much longer I can continue to spent 24/7 here with Esther, but leaving her for any length of time is like tearing my heart out. I feel so divided between my husband, children, home and business and spending time here with Esther when she seemingly needs me so much. I just don't know what to do anymore.
Ok, one minute at a time - feed Esther, cuddle as much as possible with Esther, pump for Esther, eat for Esther, sleep for Esther, and continue to be there for my family via phone calls. May God give me the grace to continue this as long as necesary, yet I pray that God will miraculously renew Esther's strength so she can breath deeply, drink her whole feeds without the tube, and tolerate some real cuddling with her mommy!
Hi Ruth,
ReplyDeleteFirst I want to say congratulations. The minute I saw the picture of your baby girl I knew you were blessed with a daughter like mine. My oldest daughter is 3.5 and has Down syndrome. I know being in the hospital can be very frustrating. We were there for three weeks waiting for my daughters sats to come up. She did end up coming home on a feeding tube too. If I could come to the hospital to visit you I would. However, I did look up the Down syndrome group in Washington (I think that is were you live) and they have a new parent package they will send to you. I bet they can also put you in touch with a parent who has been in a similar hospital situation. It really helps to talk to another parent who has been through what you are going through and can understand. Please know that I am praying for you and your beautiful baby girl.
Beth
I am sorry you are feeling so lonely. There are many bringing you before our Lord daily, but not able to with you in person. Please call me anytime, though I know that is difficult, too. Do you have a cell? I'd love to just listen to how you are doing and encourage you. Julie and I are coming in Thursday night, does that work? Cling to the Lord for your comfort, read scripture as often as you sit. Man will fail you but the Lord will lift you up.
ReplyDelete"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will uphold thee with the right hand of my righteousness." - Isaiah 41:10
"The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower." - Psalm 18:2
"Finally, my brethren, be strong in the Lord, and in the power of his might." - Ephesians 6:10
Ruth, I just heard that today was a rough day for you and was directed to your blog ...First of all, congratulations on the birth of your beautiful daughter and God's grace to bless you once again with a gift, a blessing from the Lord.
ReplyDeleteWe wanted you to know that we will be praying for your entire family while you step through this season. We will get Evergreen praying!
love the Finkbonners
Ruth,
ReplyDeleteYou are not alone. I know you know this, but I'm going to say it anyway...God is with you every moment of every day. If I lived nearer to you, I'd come visit and give you a hug...I know sometimes you just need the human touch.
I'm praying for you, Esther, and your family. I know your business probably pays the bills, but try not to worry. Everyone understands and if they don't, then you don't want them as a customer anyway.
God bless you,
Heather
Dearest Ruth,my name is Cara,we haven't met yet but we just started attending SBCC and heard about your Esther on Sunday!!!Congradulations!MY family and I are so excited for you and your family,we also have a child with DS,he will be 6 next month!I just read your note from today and my heart is aching right along with your's,it brought back so many vivid memories I felt like I was living Kaden's first few day's and month's all over again.I'm searching for something to comfort you,just know that you will bring her home soon,it sound's like we dealt with most of the same thing's you are,the feeding tube and low oxygen level's.Don't ;let them tell you not to take her home,they made us stay for 2 week's with Kaden because they wanted him to eat first,we finally convinced a doctor we could handle his tube feed's at home,we did and we successfully replaced the tube on our own for 8 months without a single problem!!!And as far as the oxygen goes,you are absolutely right that her level's change depending on her positioning,that is so common with DS because of their poor muscle tone!!!My husband and I talked about you earlier,he evensaid we could help you replace the tube the first few times if you were nervous,but they would also teach you everything before you went home.Ruth I apologize if I sound like I'm telling you what to do and being too forward,we haven't even met yet!!I think I just remember all those feeling's your going through right now so much and I know you and Esther just need to be home with the rest of your family,she would eat better you would sleep better and youwould have more help!!!Now that I have ranted and raved,just dont let them tell you what to do,pray and asked the LOrd and your husband for direction.If you want a visitor I would LOVE to come and visit,I just didn't want to entrude,I am so excited for you,I know right now youroverwhelmed and probably are feeling alot of different emotion's just know that God c hoose you and your beautiful family to giv e the blessing of Esther too!Many well meaning friend's and family told my husband and I when Kaden was born that God knew Kaden needed us,but we have come to learn that we needed him!We are so blessed by his unconditional love!Anyhow,I hope some of this lift's your spirit's,know that you are in our prayer's,let me know if you need anything,someone totalk to that's been there!318-9572 Bless you,Cara
ReplyDeleteYou have been blessed with a wonderful daughter. I hope she is able to grow strong enough to go home soon. I recently came home with my little NICU baby. He's 2 months old today. It is SO hard to be in the NICU when all you want to do is go home to your family and your home. Praying for strength for both you and Ruth.
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