A long awaited update!

Good Morning!
Well things have just been busy busy since the last time that I posted. Angeline was weighed yesterday and is now 11lbs 14oz! WOW!!!! Our family reunion started last Friday so it was a whirlwind of running here and there for several days. I did take Angeline with me on Saturday and she really hates her car seat. I likely should have been putting her in it from time to time over the past few weeks so that she had a chance to get used to it. She still really prefers to be on her side which is hard in a car seat. Once we got past the initial screaming for what seemed like forever, Angeline fell asleep and then was just wonderful at the reunion, no puking at all! :)
It was a beautiful day on Saturday, not too hot and not to cold and we had a nice shady spot for our family picnic. Angeline loved being outside and does LOVE her stroller so it made for a very nice day.
On Friday the "bump" on her arm broke open... we had actually put some antibiotic cream on it with a band aid and as I was feeding her the kids asked... MOM what is that running down her arm??? Well it was pus. I have a strong stomach and it was a bit much really to take without gagging! It drained a ton and we cleaned her all up and put the cream and band aid back on. When the nurse was here yesterday she said that we should call the on call doc and have them see (from toledo) if they want to see her arm or call in a Rx. (They had seen her arm in hospital but it has changed since that time.) I called Dr. Thomas from the Myelo clinic at Toledo and she called in some Bactrim for Angeline. We started the meds last night and she instantly threw up the first dose of course! So now we are putting it in her formula and it seems to be getting down a bit better although she gives an incredibly grossed out look when she starts drinking her "baba" like ewwww... what's in this thing? lol
So they are thinking that the "bump" is a Staf. infection... likely from the hospital... or something that she had from Haiti but that was hidden away for awhile when she was on all the strong IV meds. We are hoping and praying that it goes away with the oral antibiotics. The other option is that we take her back to Mercy and they will do a surgery to open it up and clean it all out. I really pray that the antibiotics work because I don't want her to have to go through yet another surgery. Dr. Thomas said that sometimes these things will only heal if you go from the outside in, rather than the inside out... please pray! Thus far she has had no fever and seems to be eating really well... much more than she had been per feeding.
I have a ton of pictures to get uploaded so I will do that soon! Check back over the weekend and I should have them all updated.

About going home to WA:
We are scheduled to leave Ohio on July 11th to return to WA state... Angeline has an appt. with the nuerosurg. on the 7th. So if everything goes well at that appt. and she is healthy enough to travel, we will be heading home that day. (If the arm doesn't seem better by tomorrow we will go in for that next week... so that could be another possible hold up in getting us home.)
As much as Angeline had a good weekend it was still a really long couple of days for her. She did have more than normal amounts of vomiting on Sunday and Monday and it left her with a hoarse voice and sore throat... so it was really apparent to us that she is still very fragile. This week we are spending lots of time here at "home" at my Mom's. She needs to catch up on the normal routine...
Once we are back in WA Angeline will see the podiatrist/ortho surg. to start work on her feet/legs. She will also have her bladder/kidney function checked at Seattle Children's. We do not have insurance to cover the things at Seattle Children's and we are praying that they will consider donating part of her care there. This is where she will have her regular appointments as long as we are living in WA... so it will be nice to get her started there. We were really hoping that the adoption would be final soon, but now we are thinking it may be longer than planned. We pray that Angeline is able to be adopted without returning to Haiti... (keep in mind she still has the "central line"/broviac in as well... so that's another "procedure/surgery" to take out...) but given that we want to complete her adoption without returning to Haiti there are more things that we need to just wait and make sure get completed in a timely matter to ensure that things go smoothly. We are trusting in the agency and their employees that they are doing everything possible to get Angeline's adoption done in a timely manor. Please keep them in your prayers as well. They all work so hard for the children of Haiti and for the adoptive families!
But once Angeline is able to get on our insurance than I will feel a lot better about her medical care being mostly covered. I want to be able to have all the options for the best care possible for our Angel!
I can't wait to get home and see the four of my teens that didn't come to Ohio, and my husband too of course! :) Thanks everyone for the continued prayers and that you are all still reading and thinking about us, that means SO SO much!
Lots of Love and Blessings,
Sarah

New week, new update!

HI All,
Thanks for still reading the updates! It's so important that we keep praying for sweet Angelina!
The nurse came this morning and weighed Angeline... 11 pounds! So she gained a bit this week, not as much as I would have hoped, but the nurse felt that given her constant "D" and the pukey thing that she does on and off, she was really happy with the four ounces of gain. :)
This weekend is a family reunion about an hour away (towards Toledo just in case!) but will also be Angeline's first outing since coming home from the hospital. I keep saying that I will take her with me and the other children to the park, or the mall, or on a walk, then I change my mind when I really start to think about it. I am doing that paranoid "mom" thing about someone breathing on the baby etc. but really after all that we have been through how could I not be over protective! Plus feeding Angeline and the burping (and possible explosive vomiting coupled with the super runny diaper changes) make for outings that I am not sure would be too much fun!
So for the weekend I am hoping to find a place to stay for Sat. night so that we have a room to retreat to with AC that will be a better place to feed and change Angeline... I am really excited for the rest of the family to meet her! (My cousins and Aunt's and Uncles and Grandma!)

MILLION DOLLAR BABY
One of the nurses had commented that Angeline is a million dollar baby and let me tell you... the bills started coming over the weekend (some that were "pro bono" and others that aren't and some that are "in question")... and she sure is! A million dollar baby! (And worth even SO much more than that of course!) Apparently when a doc. would be called for a consult they were not made aware that it was a "donated" care case and so there are things that may not be covered. But of course they were needed, so what choice is there? I am just so thankful for everyone's hard work at Mercy Children's and the kindness that showed me, Robert and Angelina! Amazing. I still have my thank you notes to write and there is quite a long list believe me!

Cutting teeth?
Just maybe there are two little teeth starting to work through Angeline's bottom gums... I am not completely sure but I see "something" happening there! It's so hard to imagine such a tiny baby with teeth!

Pictures...
I should be taking many more pictures this weekend and I will update them next week.

Nursing care:
I am officially on Broviac duty (changing dressings, flushing with Heparin, cap changes) and it get easier each time. The nurse will continue to come once a week to weigh Angeline. (What a blessing!)

Diaper Rash:
Well... one nurse had sent us home with her "potion" that I broke down and used and it really does work! (We ran out over the weekend but the pharmacy has the components on order so I am off in a moment to pick them up)
1 tube of EPC cream (extra protective cream, RX can order this)
1 tube of desitin
equal parts Maalox... yep! It neutralizes the parasidic poo's that she is having... amazing!


Bump on arm:
Angeline had a bump on her arm that was smaller than a pea when we were in Haiti... now its bigger and the skin seems to be getting thinner. They aren't sure if it's a boil or cyst of some kind so just keep this in your prayers that it remains "no big deal". (Paranoid Mom I tell ya!)

Ok well the kids are doing school work (nothing like getting an early start and keeping them busy for 5 mins.) so I had better go help them finish and get to the Rx. for the "potion".

I miss you Bobby. The kids miss you too! Tell Danny, Tyler and Lauren that I send my love and we will see you all in a couple weeks!
Blessings to everyone,
Sarah and Angeline

At home one week

Sorry that I haven't been posting as much... I just want to sit and hold Angeline 24/7 and it's hard to type and hold her at the same time... :)

I have some new pictures that Dominick and I took of Angeline the other day... she is looking healthier and better each and every day! Please keep the prayers going! The adorable outfit is from Aunt Nina (thanks!) and the super soft blankie from Auntie Anita (thanks!)

My Mom has been so amazing dealing with me, a new baby and SEVEN of my children here with her for TWO MONTHS... she is such a trooper! I appreciate everything Mom and I am so glad that you get to share these special moments with your new granddaughter! Please keep my Mom in your prayers. :) :) :) Did I mention that we brought my Mom a puppy when we came? (She does love "Sasha" but Sasha was the culprit of the computer barely working the past week... she chewed the cable!)

The picture of Angeline and Dom on Nana's bed is a good picture to actually see how tiny Angeline is. Dominick weighs about 40lbs and Angeline on Monday was 10lbs 12oz...







Blessings and Love,
Sarah and Angeline

Picture time!!!!!

Angeline's medical transport from Cleveland to Toledo. Ok so this isn't working so well... some pictures aren't uploading, and one did three times! So I will try again tomorrow... :)
Blessings,
Sarah

At home day three....

I have had a wonderful week with my husband and our new baby! I must admit that I have been a bit of a grump today... just knowing that he is leaving tomorrow makes me sad, but it's hard to talk about. I love my husband... that sounds silly... but I really enjoy being with him so the goodbye's are hard! Plus it's been nice being home with Angeline with him here, then there is always a back up person to take shifts standing over her while she is sleeping to make sure that she is ok.
Bringing "home" baby number 12 (even with a home health nurse) is not any easier than the first time! It all feels new and exciting... the sleeping smiles and the changing diapers... bliss!

Angeline seems to be more peaceful and comfortable with being held and moving here tends to be a bit dramatic for her. Her diaper rash is already looking better thanks to COTP and them sharing their "methods". Brilliant!
The HHN said that if Angeline's fever get's up to 102 that we need to get straight to the ER. That a low grade fever would be fairly normal with the parasite that she has, but anything higher could mean the meningitis is coming back. Last night we were at 101.9... but we are doing an "under the arm" temp so it's hard to know how accurate it is... they asked for rectal but we are reserving that for desperate times because of her sore bottom... :( Today the fevers were better/lower but she had some vomiting earlier today. Angeline tends to be pretty "stuffy" in the nose and then it causes her to choke and it's all over with... her head position doesn't help since it's back "naturally" in that meningitis position... so we are also working on that. She remains on zantac and reglan and also special pre-digested formula which seems to be helping with her eating.
All of Angel's brothers and sisters can't wait for her to be stronger so that they can take turns holding and feeding her, but for now it's just me, Nana and Leishan doing the holding. And I must mention that Bobby, my husband, has been quite the baby hog the past few days, so I am looking forward to getting more Angeline time for me when he leaves tomorrow. (The selfish mom... I know!)
Did I mention that they decided to wait on the hearing test? They thought that it was best that we wait until we get back to WA to do this as it could change between now and then and we need to get a good idea how the gent and meningitis have affected her hearing in a couple weeks. We do believe that she can either hear/see something! She does respond to people and does "track" with her eyes from time to time. Distance focusing seems hard for her... like if she is looking at my face while I feed her, then looks up at the fan, it tends to take a few minutes for her eyes to adjust.
Angeline's future cognitive skills are really unknown at this point. Having two shunts and going through brain tissue two times already, along with the TERRIBLE meningitis that she had, really may have affected her brain abilities. We are expecting the worst and hoping for the best. We are also working on stimulating her as much as possible to get those neuro pathways growing and learning!
After six days of antibiotics via IV in Cleveland she arrived at Toledo with her CSF counts for glucose under 1 (trace) and her protein counts at 850... (the protein actually eats the bacteria from what I understand)... so I dare to think about what her counts were in Cleveland before the antibiotics! The staff at Mercy mentioned that they have one seen one other baby with counts that bad and that baby did not make it. They told me before we left that they really weren't sure if she would ever make it to see the first surgery... that is how desperate a situation this was. They didn't want to "scare" me... but wow... I still haven't had really good time to sit and reflect upon the power of prayer and the goodness of our Lord! Please keep the prayers going we are praying for more miracles in the future!

Just before we left Mercy (a Catholic hospital)... the minister came in and asked if we wanted to receive communion. Of course we did! He asked us about Angeline and we prayed the our father together. Robert and I did our Communion and then the minister laid his hands on Angeline's head and prayed for her and started to cry... his shoulders slumped over and he was physically moved and Robert and I both cried... the minister left the room in a hurry and it left us both speechless while we looked down at our beautiful sleeping baby girl. It was the perfect moment at the perfect time, thank you God.

Pictures coming soon.
Love to all.
Sarah

HOME

Sarah isn't being able to access the blog right now and asked me to post this quick update.--Anita

We are home! Well home at my Mom's in Cleveland. The visiting nurse should be here any moment so I am keeping this short and sweet. So far things are ok. Angeline did run a fever last night and this morning but seems to be doing well. I am anxious for the nurse to get here to find out more information. It feels wonderful to be "home" and have most of my children together. More soon!
The prayers are working, keep them going!
Love and Blessings,
Sarah, Bobby and Angeline :)

Monday Update, Late, sorry!

Hi All,
First off... thanks for the donations! I am still not able to reply to emails and so I have them sitting waiting to send out the Thank You's... but honestly haven't been able to, which I feel terrible about! Also thank you to those people who have emailed and offered to come up and help out here at the hospital, we are so blessed by all your kindness!!! (I promise to reply as soon as I can!)

Well yesterday morning was well anticipated. We woke up at 4am, to be over in the room by 5am to be sure not to miss Dr. H. (He does he rounds early and fast so we HAD to be there.)

So we waited, and waited and my stomach hurt, bigtime... I think my nerves were getting the better of me. Dr. H. and his nurse C. and his resident came into the room. Dr. H. asked me how things were going, and I said that we had a looonnngggg weekend... that was all that I said and he instantly took a defensive tone with me. That was all it took, just his tone and I started crying. What was slightly embarrassing about this long awaited cry is that it was one where you are sobbing so hard and trying to catch your breath so long that you aren't even really able to speak! It was due time. I had been really good thus far with keeping my tears for private and not just letting it all go there in the hospital room... but it started and it was hard to stop! Dr. H. really felt that her shunt IS working fine. He said that he put in a medium pressure shunt, which means that she does have to build up enough pressure in there to drain. He explained that the external shunt drains way more CSF than it needs to. Dr. H. ordered another CT scan to see how things look etc. and also explained that Angeline is 99% stronger than most children he has ever seen. That most babies would have died a long time ago, that the antibiotics that she is one are SO STRONG that they would make an adult have D. and vomiting... and that her parasite that she has (cryptosporidium?) can also cause the vomiting (and we know that is where the D. is coming from).
Dr. H. also explained that we will see how her eating does after she is off the meds (for the meningitis, today, tuesday is her last day)... and that the shunt may take some time for her body to actually adjust to it... and that he really felt that everything was ok.
Of course his resident WHO WAS STANDING RIGHT THERE... never ADMITTED during this whole scene that SHE WAS THE ONE that stormed into Angeline's room on Friday that there was NO CHANGE in the CT scan pre-shunt to post shunt and that the shunt was likely NOT WORKING. Then told me that if they think it's an emergency that they will do surgery but she thought that Angeline would be ok until Monday. Well I do hope that Dr. H. knows where I was coming from!
And the prayers are working! Angeline is able to eat a bit better each day, keeping more down each time and is off her IV fluids for right now because she is making enough wet diapers! YEAH!!!!!!!!!
Her hearing test is later today and she is getting her staples out of her head... and we may be able to go home tomorrow! (With a home health nurse???) We aren't sure on the details yet, but I need to get over to the hospital so that I can talk with Dr. G. about things (Bobby is over there now with Angeline)... keep praying!
Love you all.
Sarah
P.S. ROBIN K. please email me ASAP or leave a message on my cell phone with the details on what COTP used on Angeline's bottom!!! She is raw and bleeding from her constant "D"... the "skin" doc has came tons of times and we have tried a ton of things and nothing seems to be doing the trick. We have left the diaper off as much as possible and when its on we are keeping an O2 line in there to help dry it up... but if you have words of wisdom let me know. (I had thought that there was a special antibiotic cream that you used... ???) Thanks and Hugs!!!

I'm here!!

This is Bobby. I finally made it here to see my Sarah and my little Angel. Thank you to Karl and Sharon for making this happen. She is so beautiful. I finally got to meet her, hold her, kiss her, all the things I've been dreaming and praying about for 3 weeks. She's so remarkable. Such a strong willed baby. Seeing her for the first time, I didn't realize she was so little, made my knees weak. I can't believe I have a new little girl. I was feeding her today and felt an immediate bond. I looked into her eyes and she looked into mine and I knew that she knew her daddy was here. Sarah is elated to finally see me after 4 weeks away. I can't tell you how excited she is to have her "rock" here with her. I could tell a sense of relief came over her knowing that she has someone she loves here to help support her. As for myself, I'm completely in awe of the wonderful job Sarah has done with the baby and the doctors and nurses, and completely in LOVE with my little Angelina Ballerina.

Update

We are going to meet with Dr. H in the morning to see if he thinks Angeline will need the shunt replaced and we will update as soon as we have news. Angeline did eat better today than she has since Tuesday, but we still see signs that she's in neurological distress. Please keep the prayers coming. Blessings.

Bobby, Sarah, and Angeline

Quick Update

Thanks to the kindness of strangers my husband is on his way to Toledo! I am feeling like a weight has been lifted off my chest and I know that my husband will be able to keep me emotionally and spiritually grounded like I need so desperately right now! Thank you Sharon and Karl, there aren't even words to express our gratitude.

I spent most of the night with Angeline... it was a rough evening and night. Angeline did take a bit of "sugar water" and was able to keep it down last night. She was NPO for the Upper GI that took place this morning. Just got the results back and everything looks normal there. (Good news but bad because we still have no answers.) She did drink three ounces of the Barium (I think that is what it is called) for the GI and kept it down, and actually enjoyed it, sad to say.

This morning I was able to get Angeline to keep three more ounces of sugar water down. The NS on call did not come last night (the resident came last night and this morning but no sign of the NS attending)... finally this morning the PICU attending Dr. G. was able to call the attending NS while he was in the middle of surgery and let him know how upset I was, and how upset the entire PICU was that this tiny baby is suffering and he hasn't even seen her! (Literally she has had a scant ounce here and there since TUESDAY, and other than her IV, that is IT! Her RBC count is really low and she may need another transfusion if things don't change soon.)
So finally the NS attending shows up... not Dr. H who did her two surgeries, it's not his weekend and I do wish that he was here! He is "the guy" that works NS for the babies and has a plethora of experience and I was really feeling that if I could just get HIM to see her then I would be able to feel at peace with things.
But no... it will wait until Monday. The attending NS that was on duty for the weekend checked her head and her belly and said that he feels that it's working fine and that the vomiting is from something else. I want so badly to believe him, but it just seems to coincidental that the vomiting has been non-stop since the external shunt was removed and the internal shunt was placed... so he said that they will keep a close eye on her, but still no answers.
My stomach is churning and I want to believe that he was being honest, I really do. But there is this part of me that feels like it is her head pressure. This afternoon I spent two hours giving her three ounces of formula, laid her down (inclined UP), as she was asleep and she instantly vomited, it was like the movement and change of position was just too much for her to handle.
So for now we sit and wait. We are going to try an ounce an hour and see how we do... it's so hard watching her suffer so terribly and I do hope that we get some answers as soon as possible. I am completely frustrated!
Continued prayers appreciated. Love to all.
Sarah

Roller coaster going WAY DOWN

Please pray. Please forward this to everyone you know so that they can pray. Angeline has still not been able to keep anything down. She just got back from another CT scan and the neuro-surg. resident thinks that her shunt is not working ALREADY. Which means another surgery. Angeline will have an upper GI tonight and we should know more later... maybe not until the morning and she may be having that surgery tomorrow.... I am seriously depressed and worried... this is really terrible news. :(
Please lift our baby Angeline up in prayer!
Love,
Sarah

A little bit of this and a little bit of that...

For some reason the computer is not allowing me to reply to my email, so hopefully I will get this figured out tomorrow. Sorry for the delay everyone.
Rose... please email me at sisters3designs@aol.com ... I would love your email address so that we can keep in contact, I bet that you have a ton of insight for me!
Anita... please email me your phone numbers again... I can't find them! Sorry!
Miss Angeline is on pain medicine and slept most of the day. This was a good thing for her little body surely needs all the rest that it can get. I was able to get three ounces of pedialyte in her this afternoon and it stayed down! It was wonderful to hold her and cuddle her even though she was super sleepy.
I took advantage of her sleepy day to catch up on some rest. I have a horrible stomach thing going on, not sure if it's stress or what. (That would explain it.) I am also getting our mountain of laundry done! :)
They took a stool sample today to test for possible parasites or giardia. I am hoping that we can get to the bottom of her watery poop... her little bottom is so sore and needs a break!
(Thanks for the thoughts on that Ann!)
I can't seem to find my camera cord but as soon as I do, I will be updating the blog with tons of new pictures! Sorry on that note too. (I guess that it would be a good idea to start getting my things together tonight a little bit huh?)
Dr. G. is talking about letting Angeline come and stay with me at the home away from home here in another hospital building in a couple days as long as she is eating ok etc and off the IV. I will just have to take her over several times a day for them to give her the IV antibiotics through the Broviac. (If she hasn't pulled it out by then... it's been a daily struggle keeping her hands from pulling out the wire, yikes! She obviously has her own opinion on all the cords and wires sticking out of her! lol)
The "bone doc" came today to look at Angeline's feet and he said that she doesn't have club feet, or rocker bottom feet, but a bit of both and it is completely different that what they usually see. (It had a really long name of it's own.) He said that she will need major surgery on her tendons and possibly even her bones in order to get her feet ok to stand and possibly walk in the future. I must have given him some kind of "look" because he then said... "I bet that you have heard that everything is really difficult many times over the past few weeks." Yep, sure have! He said that he may be able to make some soft casts for her feet and legs that we can use until we get back to Washington.
I am anxious to get the results from the chromosome doc... I think! Part of me wants to know and another part of me wants to tell the dr's to stop looking at her so that I can just have one day to revel in the glory of my beautiful new baby girl and enjoy a moment of just being a Mommy... again... for the 12th time... feels just as wonderful as the first time. We are so very blessed!
That brings me to another point and if I am getting redundent here please just ignore me, but I hear over and over again how lucky Angel is to have "us". And it may sound really cliche but, we really are the blessed ones! In the past weeks I have grown so much by watching all of Angeline's trials and tribulations. My strength is as good as ever, and my spirituality has flourished beyond what I ever thought capable. I think that I am going to be a better Mom because of Angeline, and a better wife and woman!
Blessings :)
Sarah

Surgery #4 Update

The nurse let me carry Angeline down to surgery this morning and as I held her in my arms tightly I could feel Jesus's arms wrapped around both of us. It was a wonderful feeling of peace and calm and a reminder that I need to turn things over to God. I know that there is a plan for Angeline and God is in control.
Angeline did well during surgery and everything went great. After surgery they tried to give her some sugar water and she threw it back up, either from the pressure still in her head or from the anethesia. So we are giving her tummy some time to settle and she has some pain medication going so I am praying that she is sleeping right now as I write this.
Thanks everyone for the prayers. I feel the love and I appreciate it more than I could ever express in two words... thank you.

I will write more later.
Blessings,
Sarah