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.

Dr appt today, stiches out, they look really good. Now she can take a bath (good because the odor of sour milk and baby acne takes away from the adorableness a little!) except we are waterless in wyoming right now! Anyways the dermabrasions are still early to tell I guess you have to wait till they are totally healed and basically see if they look like normal skin or do they look brown like mole still. And the balloons... he still wants to wait to inflate at least another 2 weeks to make sure they are fully healed. So nothing really new to report in terms of her surgery we are sort of in a holding pattern. Praise God for the good healing though. In terms of her fussiness the nurse thought in may be gas so after a weekend pumping her full of Mylicon drops with no change they are now going to try her on Zantac thinking she may have reflux. So hopefully she starts feeling better after she eats (because the screaming for 5 hrs straight we experienced Sat night is NOT fun). Anyways I will leave you with a sweet picture of her when she is being low maintenance (it reminds me of that cute pampers commercial where they are playing Silent Night and show all the sleeping babies, super cute!) and ask you to all please have a Merry Christmas and spread cheer to your loved ones and cherish every minute with them and thank God for sending his precious baby Jesus to earth for us! Amanda and company

Just wanted to post some cute pics, nothing new to report! Dr appt Mon, will write more then. The pics show Sadies way of bonding, cuddling for a nap!

Three pics from her 1 month (time flies) on Thurs.

And the big meeting with Santa, I almost felt like a normal person going to the mall. Thank goodness for snow days and Craig will be home for 17 days straight!

Post op appt

Hello all, the Dr appt on Thur went well. His exact words were, "I couldn't be more pleased, everything looks great. " He also said that he had been praying for her all week, we had never really mentioned anything to him about our faith except for in response to all his comments which makes me think that they are genuine. It's a pretty awesome concept, a Dr. that prays for his patient. Its a blessing and a challenge. Anyways it is not time to start injecting the balloons yet, they are still healing. And the dermabrasion is healing fantastically but it is too early to tell if it worked. So we are going back to his office on 12/21 and at that point we may be able to take off the bandages and begin moving forward. She hasn't needed any Tylenol in a few days and although her personality as a bit of a fussy kid had emerged several days before surgery at least I know when she is screaming its not due to pain! Seriously we had a few BAD days this week but then Thur, Fri and Sat night have all gone amazingly well. She is starting to be able to go to sleep with a little bit easier time. Which makes mom and dad much happier. Last week Craig almost missed work one day because we over slept from being up most the night with Sophie and it has been a little rough on me as I seem to spend ALL day holding her but like I said she is starting to mellow out a little more. This weekend we even went on some outings, three stores, dinner and the library. Have I mentioned it is only my 4th time out of the house in a month! Talk about cabin fever. Well I continue to appreciate all the prayers and notes. I guess a continued request is getting her adjusted to sleeping and awake times. Starting soon I think we will have to adapt her positioning especially for the balloon in the back. Love to all, Amanda

A few more pics

Post op day 1

Hey everyone we made it through. I know many of you at least on my side of things have been updated by my mom but here is somethings I wanted to share. The day before surgery I made myself really busy and didn't even think about what was coming and I didn't really do it on purpose but in retrospect I think that was a huge answer to prayer because my normal self is a worrier. The night before was a little tough, I'm not going to lie, Sophie was not to happy about having to fast. Again in retrospect even though she was crying I held her and rocked her for two hours and now its a little harder to hold her so tight so that was good. At the hospital a couple from church met with us and prayed and I had a lot of peace going in to the surgery, the worst part was right as they went to take her away from us or as Craig says rip her out of my kung fu grip (if you have seen Meet the Parents you should giggle) she started crying again and that was hard for both Craig and I. During surgery my parents served as excellent support and distractions and I dare say we had fun and the time went fast. We were probably the only group in there chuckling and making friends. A woman saw Craig reading his bible and asked him to look up a verse for her, we struck up a conversation and her little 5 year old boy was diagnosed with brain cancer at 1 month old and has had countless surgeries and procedures. It sure makes you think. After surgery the surgeon came out to talk to us, in the front there is an expander, and incision, and three areas of dermabrasion. In back there is an expander, an incision and one small dermabrasion. The dermabrasions he is doing in areas where the mole looks very surfacy because while painful if successful the healing will be much easier and quicker than the expanders and it will create more healthy tissue. Anyways I really liked what he said, there are three stages and each require an equal amount of prayer, the first is the actual surgery and we are through that already, the next is the immediate post op and last is the long term plan of expanding and preparing to replace the tissue. I praise God again for a surgeon who emphasizes prayer. So we went back to see Sophie. This was another tough spot she screamed at the top of her lungs for almost 2 hrs. She wouldn't eat either by nursing, a bottle, or a little sugar water solution. Her sweet little face was so swollen and she kept trying to find her hands to comfort herself and kept bashing her self in the head with all the tubing and splinting for the IV in her hands. We went up to a room and it wasn't what they told us originally where we would have a private room so I could stay with her and have privacy and the nurse that we had initially was very robotic and would answer my questions like she was reading from a textbook and kept asking me what I thought should be done for Sophie. Like I knew, this is the firsttime I ever had a my two week old baby require major surgery!?! And Sophie was still screaming! It was like 1 pm and my head was starting to pound as I was extremely hungry and tense and did I mention Sophie was still screaming! I had praying on and off in my head ever since we got her in are arms again and I was about to send Craig to get me food although I was petrified of the thought of him leaving me there with my screaming child and an unhelpful nurse when Sophies meds kicked in finally and she quieted down and a tray of food came in for the mother of the patient. God is good. Hospital food never tasted so good and within moments my headache was gone and after I ate Sophie nursed! Praise God! As the afternoon wore on Craig had to leave for awhile to transport Grace from babysitter 2 of the day (Grandma) to babysitter 3 (Aunt Angel) and there were still rough patches and Sophie would intermittently cry out and her little throat was so hoarse sounding and as the afternoon wore on the cries turned to moaning and whimpering and late that night it almost sounded like hiccups. Craig came back around dinner time (didn't help that we are in the middle of a blizzard so the roads have been slick). My mom and sister were praying for a night nurse that was more emotional or "our style" as I called it although that first lady bless her heart did arrange for us to have our room alone so we would have privacy. But my night nurse was FANTASTIC. At 5 pm Sophie drank one ounce from a bottle but then after that wouldnt eat. Each time I would try nursing first, when that wouldn't work I would pump and then try to give her a bottle and then would give up as she just slumbered on. The good thing is she gradually seemed less and less in pain as I described the changing cries above but she just was zonked out. I got a nap from 8 pm to 10 pm and Craig went home from 11 to 5 and slept and cared for the dog. And Angel graciously (no pun intended) took care of Grace. All through the night Sophie slept soundly and by this point wasn't making any crying noises just fast asleep. One difficult thing is I selfishly want to hold her but feel afraid to, there are few areas on her trunk that aren't affected and its hard to know how to hold her. In a week or so that should be a lot easier. In the morning the parade of Drs started, all the plastic surgeons came in none of which appeared to have any experience in pediatrics but Craig and I suspect they had a curiousity to see the once in a million nevus baby, but had no real answers in terms of her not eating. Finally we got her to eat another ounce from a bottle around ten and then our Dr came in around 11. The surgery stuff all looked fine but he wanted her to eat one more time and for us to feel comfortable before we went home. And praise God at 12:30 she gulped down a 2 oz bottle. We got home about 2:15, Grace was still with my parents who took her off Angels hands this morning. And at 4 pm Sophie woke up, looked around at me with eyes wide open for a few minutes, NOT CRYING. She took her medicine and started nursing! Praise God! Just then my parents showed up with Grace and we had a nice visit and dinner with them. She is still very sleepy but wakes up on a regular basis to eat. She isn't crying too much and when she does its not a severe pain cry which is awesome. She is a bit easier to handle now without the tubes and stuff and in her real clothes and lovees. So that brings you all up to speed. As you can see many answers to prayer along the way and please continue to pray for this phase 2 recovery period as the Dr described. I have been so touched by the outpouring of love and emails, my parents forward all the emails they get to me. I have to say my dad's One America family is most impressive in there sending of prayer! The prayers are working, God is so good. I am attaching pictures so you can see little Sophie brave boo-boos. Love to all, more in a few days. A weary Momma