Today was a tough one...

Tonight was the first time in awhile that I broke down and really sobbed about everything. The injections went horribly this evening. My poor husband much braver than I who is doing the absolutely best he can do and I am convinced better than I can do takes it on himself I know. We wait to do the injections right before she will need to eat because I figure the feeding will comfort her after. However that means that sometimes she is already crying before we even stick her and for those of you who have heard my dear little Sophie cry its not a girlie cry, the girl can scream. And when she is crying she does larger breaths, which means great big lung excursions expanding and contracting while Craig is trying to hold still and inject. And for some reason tonight TWO times the needle was in and the fluid wouldn't go in so on the back he ended up poking her 4 times and she was bleeding and the needle I swore almost snapped off inside her because its so small and she was wiggling so much. Meanwhile our whirlwind 3 year old was circling around wanting to alcohol swab Sophie or give her her binky to "help". And I am blabbering instructions to Craig the whole time not because I am trying to criticize (I make sure he knows that, I tell him a hundred times what a good job he is doing) but because I feel helpless. Now picture 2 min after this drama and all four of us are on Grace's bed (Sadie would be up there too if it weren't for all the stuffed animals there is no room), Sophie is happily nursing as though nothing happened and all is well with her world, Craig is reading us all library books and our family PRINCESS devotional while I brush the pile of wet snarls on Grace's head. Somewhere between the third and fourth story I am reduced to a blubbering pile of tears. I am sad and angry. I am so mad that she has to go through this, that I can't protect her from it, that on top of having to poke her, her skin is going to get all big and stretched, and I, her mother am going to struggle to hold her and comfort her. And then she will have to have surgery upon surgery upon surgery. Even now several hours later when I thought I was calmed down I am crying again. I know in my heart I need to be grateful that she is ok and we will all get through this. There are people hurting far worse than this and I have no right to complain. But tonight I don't feel so hopeful. "I lift my eyes up to the hills - where does my help come from. My help comes from the Lord, the Maker of Heaven and Earth" Psalm 121. Please pray.

Next surgery scheduled

Big girl at 2 months, she likes to sit up and do the bobble head dance!
So the Dr had mentioned wanting to do more dermabrasions but was sort of vague and casual about it and then I get a letter yesterday that he has scheduled the surgery for the first Wed in March. He is the kind of Dr that when he tells you your appt is you come then, there is no "Thurs don't really work for me..." He is too busy and in demand. Its stressful, I won't really be able to get off work after just going back. I am already not getting paid these last few weeks of maternity leave. Plus, the dermabrasion idea still freaks me out a little bit, but I am also freaked out by the number of satellite moles that continue to crop up. Yesterday I found 3 more! Well keep praying, and for the injections too. We have to do that again this evening. Amanda
PS This is what Sophie thinks of the injections...

We did the injections last night by ourselves, it wasn't too bad. We did it when she was already ticked off and crying from getting dressed after her bath. Craig did very well this time and she is not a great binky person but I let her suck my finger which I think helped a little. Our theory for the one on the back next time we are going to try her bent sort of like when you get an epidural. We'll see, thanks for prayers Amanda

Update

Hey quick update, the Drs office found a pharmacy so we got everything but until they establish a contract with Messa we have to pay, it was a brand new pharmacy and they didn't even have a cash register. Anyways we got all our stuff and Craig did the injections under the Dr watchful eye on Mon and it was a little rough. We have to do it ourselves at home today so wish us luck. She also had a pediatrician appt and weighs a whopping 12 lbs 2 oz. Big girl. Its her sisters third birthday today so can't write much got to run. Amanda

New Year update!

Hello everyone, I hope everyone had a blessed Christmas and happy New Year. We had a very busy couple of weeks (exhausting but good) and have been trying to get into a realistic routine the last two weeks with Craig back at work. I think he gets a little exhausted trying to balance new baby "issues" with work but more on this later.

Sophie on Christmas DAY!

Sophie as a Christmas tree

Sophie had an appt yesterday with the surgeon. She had her first injections (the Dr did it to show us how so we haven't had to do it yet) and we are to start injecting 3 ccs into each port every other day. The one in front she didn't even cry but the one in the back she did, the needle is sooooooooooo fine the Dr said he could stick it in him self and he wouldn't even feel it so apparently she didn't feel it in the front but did in the back. The drawback to the very fine needle is that its hard to get the liquid in and takes longer. If we had used the bigger needle it would go in faster and not take as much pressure but hurt more. I think Craig will have to do the needle because of the pressure it took. I guess all be the on the soothing/no squirming team. So now for the trouble acquiring our supplies. He wrote us a "prescription" for the needles (we need a seperate kind for drawing the liquid out of the iv bag) the syringes, the iv solution and alcohol swabs. He told us to get to know our pharmacist well and explain the situation and that they would need to hear all about it because they were going to be someone to help with all the supplies. So Craig went to our friendly local Walgreens that we always use and the Pharmacist was like I can't get you those things and bill your insurance, I wouldn't even know how to do it. And I can't get you saline in a bag it only comes in a bottle. So we have nothing we need and we are supposed to start doing it tomorrow... Craig is calling our insurance today and then calling the Dr's office back, maybe if he calls the pharmacist. Anyway if you are reading this say a little prayer that all the kinks get worked out. I guess we need on official method of disposing of the needles too, you cant just throw dirty needles away! I would have thought with all the diabetics in the world that this wouldn't have been so complicated.

Then the Dr thought the dermabrasion especially on front looked promising which I thought was really weird because you can still see brownish colored mole in the area it is just much lighter so now he wants to schedule a whole bunch of dermabrasions which she will still need to be put completely under for but thinks they would not make us stay overnight. He said he may just try to abrade a bunch of the satellite moles and the paler stuff mostly on the front, thighs, buttocks, etc. Craig seems to think this is a great thing. I trust this Dr wholeheartedly but I don't feel psyched about this. If it doesnt completely remove the mole the way the expanders do then it doesn't completely remove the cancer risk, right? So I don't understand why we would go nuts literally burning my baby all over just to lessen the appearance and not remove the risk. This is me just thinking out loud and obviously I will pose this question to the Dr before we go ahead with this plan, but I need to pray about this issue also because I don't have peace with it although it would be a lot easier then the balloons and she didn't seem to have pain with the burns before because I guess the saran wrap bandages keep it contained where she doesn't really feel it whereas if the bandages come off then it stings when exposed to air like a skinned knee.

Finally I have wanted to post my feelings for a few weeks (all they change on an hourly basis) but I feel really weird venting about things that all people adjusting to new babies experience. But I figure if you are reading this you have already expressed a willingness to pray for our family and if you are willing to pray about Sophies "situation" than maybe you wouldn't mind adding a few extra prayers for normal baby issues. The Zantac for possible reflux has seemed to help somewhat and being through the holidays and getting into a routine has also improved her sleeping but she still goes through occasional bouts of insane crying especially right before bed for the night. But sleeping she is doing well, a lot of times she doesn't wake up until early when Craigs alarm goes off (around 5:30) and doesn't nurse very well which makes me think if we weren't sharing a room she would maybe sleep all the way through the night! Ah the joys of a small house! So you are all thinking what is her issue. Here it is I am rapidly approaching my return to work date and I barely leave the house, I am plagued with anxiety when I do and can only manage with Craigs help and the thought of doing it without him and both kids is petrifying. The only time we did it was a 30 min trip 5 min away to the pediatricians for Graces flu shot. I am petrified that I will never be able to function in society, those of you that know me well know that getting out and about isn't my strong suit anyways. There are periods of each day when I literally feel I am having a panic attack at the thought of going back to work. And the times I have peace I am going through the motions, trying like a mad woman to get my whole house in order so that I can function! As if lists are going to help my emotional turmoil. So know that some of you have a glimpse of my secret neuroses (only my mom and sisters were supposed to know!) I guess you could pray for my peace and sanity as well. On top of everything we are trying to potty train Grace, going through extra stress in order to hopefully eliminate one more stress from our life. I feel everyday that I feel so lost and alone God is teaching me, I am becoming stronger in faith, praying for others more (especially mothers!) and praising God for my many blessings. Top on that list is all the wonderful family of God that has blessed us with love and prayers. And Sophie is thriving. She is becoming so chatty. Every time she finishes nursing and gives a good burp she always wants to chat and sits and goos and coos and smiles at me. Its so cute. She even has this way of saying hi where her mouth moves like she is saying hi and she smiles even though no sound comes out. This is usually when she first sees me. I am going to try to get a video of one of our chats to put on here so be on the look out for that. Love to all. Soldiering on..... Amanda

Bonding in the bath. Sophie is fascinated by her very "animate" big sister and always stares at her in wonder and amazement when ever she is around. Graces makes for good tracking practice.