What's been going on...

So initially I thought, oh great, a way to keep everyone up to date on holidays, birthdays, the big things, and the funny everyday moments. But little did I know it would come in handy to keep everyone up to date on what is going on with our little Bailey Bean. I'll back up and give some history of the past two weeks....

Saturday 1/17/09
After a few days of thinking "something isn't right" but not knowing exactly what...just noticing that Bailey wasn't eating as much as usual and that she was rather sleepy, I made a pediatrician appt on that Saturday. When the doc came in, she said, "I don't like her color," did some quick blood-work, and sent us over to GBMC's ER b/c her hemoglobin level was low, where we found out that she was severely anemic and they needed to check things out further and see why and what they need to do. So we went to the GBMC ER and they ran a bunch of tests...and found her hematocrit and hemoglobin levels were VERY low. So they decided to transfer us to Johns Hopkins since they have a Pediatric Hematology team and they could really do a work up on her and give her the best care. So one ambulance ride later (detoured around the beltway b/c of the Barrack Obama stuff downtown, how convenient, ha ha), we arrived at the Hopkins ER and met with some great docs and got lots of information. They started/continued the process of ruling out and ruling in possible reasons and solutions for her anemia. At that point, they had gotten some results and has determined that Bailey is not making enough red blood cells. This has most likely been happening awhile slowly, but when she had a cold recently, it exaccerbated it, or she had just gotten to the point where her red blood cell level was so low that it was affecting her. She is receiving a blood transfusion now to elevate her red blood cell levels and help her regain some color. Next, the doctors will continue to monitor her, see if this helps, and determine if this is a permanent anemia problem that we will address on a long term lifetime basis, whether it is transient for her as a child, or whether it is caused by something else. So right now we will wait patiently for results and trust that these skilled doctors figure everything out and help our sweet girl.

Bailey is resting peacefully (until they come in in a few minutes to start an IV to give her saline solution to help raise her blood pressure a little) in her hospital crib beside me, asleep for about 15 minutes for the first time today, aside from catnaps in our arms. Our sweet Bailey bean is doing okay and is a super trooper, but so tired. I am spending the night here beside her in a pullout chair and Ben went home to get some sleep and will be back in the morning. Its been a blessing b/c she was seen by a different pediatrician than usual this morning, and we wonder that if we had seen the regular one, she may not have noticed her coloring as quickly since she might have been used to our "fair skinned" (ok, white!) child. We are so blessed to also live so close to Hopkins and a team of such great physicians. So God is good, and in control, and we know that. We are praying for our dear little one that she can get rest, that she will get the red blood cells she needs to feel better, and that her body will tolerate the increase in blood (since she's been so used less for so long) and that the doctors can find out exactly what is going on to treat her. God has given me a surprising peace about the situation this evening, and I pray he continues to comfort us during this trying time.

Sunday 1/18/09
Good evening....ahhh, just taking a moment to take a breath and take everything in and recap and update you all on the events of the last 24 hours. Since my last email, Bailey has gotten some sleep (last night but no naps today) and had three blood tranfusions, two small ones last night and one slightly "bigger" one today. She'll have one more tonight, and they will continue to test her blood and see how she manages it all. Basically, her red blood cell levels were very low, so low that they know she has been anemic awhile, b/c her body has had to be slowly transitioning to these low levels over time. Normal hematocrit levels are 30-35 and normal hemoglobin levels are 11-15 for a baby Bailey's age. When they tested her blood, her hematocrit was 9 and her hemoglobin was 3.2...of the chart low! So they want her red blood cell levels to elevate to a higher level, yet still less than a "normal" range. They have to go slow since her body is used to much less than what is in the average range, and giving her enough to put her in the normal range would be too much for her to handle. Hopefully by tomorrow her hemoglobin levels will be up to 7-8, which is where they want her to be, so that her body will still have to do some work to hopefully start making red blood cells but enough for her to feel better. She is already more lively and seeming more like herself.

The doctors have ruled out some things (autoimmune things since her body isnt fighting off the cells, its just not making them, and its not leukemia-thank God!) and are narrowing down to a few options. One is a longterm anemia called Diamond Blackfin Anemia and another option is a transient form of anemia that would go away with some "boosts." Those are just two options. We feel like we are in such good hands and the doctors expain things so well and take their time and really make sure we understand and that they are thorough with every decision and step. I cannot be thankful enough for that. Chances are, as long as she does well with the next transfusion and her levels go up to where they want, we may be able to come home tomorrow. We are also so thankful for our visitors today (Betsy, the nurses love the candy) and all the emails, calls, and texts...you are all so special to us and we feel very loved. We'll do our best to keep you all in the loop as much as we can.

Monday 1/19/09
In the words of Martin Luther King,, Jr...

Home at last home at last thank God almighty we are home at last...okay, so that's not exactly he said, but rather appropriate for the holiday and today's events. We are HOME!!!-earlier than expected. Bailey (with her new pink skin complexion) is doing great and playing on the floor right now with her daddy. She is playful and vocal and seems to be feeling just fine. Everyone at Hopkins was wonderful, but we were not sad to say goodbye. We look forward to Bailey sleeping in HER crib, wearing HER clothes, and us sleeping in OUR bed!!! Ok, time for a shower-YES! We are excited for the snow outside, which just makes snuggling down indoors even more appealing. We are not through with this whole journey of "what is the culprit for the anemia?" but she is healthy and happy for now, and we'll take the next steps week by week. Thank you all for everything. We came home to a shoveled walk, hand made card in the mailbox, with food in the fridge (and cookies on the counter)...so grateful. Now if only the Ravens had won................good night friends.

We got the names of the other little babies (Bailey's weekend buddies) that were in the unit with her, and wanted everyone to be praying for them. Some have been there for months or since birth: Abby, Deven, Brody, Jackson, & Leala. They are precious in HIS sight. We could not help but want to take every single one of them home with us. Some of their parents cannot be with them since they live far away, so Hopkins is their second home. Please keep them in your prayers.

Tuesday 1/20/09
We have had such a blessed 24 hours home again. Bailey is so playful and vocal and slept from 7pm til almost 10am (she did wake up to nurse several times) this morning, after those days of interrupted sleep at the hospital. Likewise, Ben and I got lots of sleep last night too. She is eating well and acting like a typical 7 month old. So we are over the immediate hurdle, but now I ask for major prayer for the next step. After all of the tests that have been done so far...two possible diagnoses are most likely. We know that her body is not making red blood cells. So there are a few reasons why this could be. First is something called Diamond-Blackfan (sounds like a ski slope) Anemia. This is something that would require lifelong treatment...more blood transfusions & steroid treatments. We are praying it is NOT this, but realize in the big scheme of things, it is something we/she can live with, though scary for us right now with all the unknowns and need for ongoing treatment. Ben and I both have to get blood tests this week since there is something in our blood which would help confirm that if it is the case. The other possibility is that she has something like that only temporary. It's called Transient Erythroblastopenia of Childhood (TEC). She would recover from this and it is our fervent prayer that this is what we are dealing with. To be honest, I am scared. It is so hard to think of a journey ahead of us that will be difficult for Bailey and we want nothing but the best for her. But in the midst of it, we find peace and hope regardless of the diagnosis. Please join us in praying for Bailey, for the doctors at Hopkins, specifically Dr. Strouse, as they review test results and God guides their decisions and gives them wisdom.

"Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths." Proverbs 3:5&6

"Whenever I am afraid, I will trust in You. In God...I have put my trust; I will not fear. What can flesh do to me? Psalm 56:3

1/26/09
Our brave little girl...Thank you for the ongoing prayers and support this past week. You have all been great. I apologize that I couldn't call some of you this evening, but we were at Hopkins for a few hours and I am not feeling well, so I am going to bed as soon as I get finished with this email. We had thought we would have a better idea of which way we are leaning in a diagnosis, but in a nutshell, we don't know anything more yet, but we were able to touch base with Dr. Strouse, and Bailey had blood drawn to see if she is starting to make more reticulocytes and red blood cells. She didn't even cry! What a brave girl! The results were not back yet for the other tests that were done. We did get to ask a lot of questions and we will go back in 2 weeks to determine if she will have another transfusion at that time, or if her body has begun making its own red blood cells. If it doesn't at that time, it is most likely Diamond Blackfan Anemia, and they will do further testing to confirm a diagnosis one way or another. I will keep you updated, but for now, sorry to be so anti-climatic, but that's all folks.

1/28/09-Last night
We got a call from Dr. Strouse today, and he had the results of Bailey's test that was sent out to California. Basically, her ADA (can't remember what that stands for) was elevated (three times the normal range for a baby her age) which leans him more towards the diagnosis of Diamond Blackfan Anemia, since ADA levels are elevated in kids with it. Sooo, we go back for follow up on Feb 9th at Hopkins. At that time, if Bailey has started making her own red blood cells, then YEAH-it won't be Diamond Blackfan, but if she hasn't, it most likely is. Then she would have a blood transfusion later that week followed by a bone marrow biopsy. So that's where we are. The news today was discouraging, but we are trying to stay hopeful, yet realizing that the chances are leaning toward the diagnosis we didn't want. We know God doesn't give us more than we can handle, so I guess we are working on testing that theory (we know its a truth, not a theory, but you know what we mean). Thanks for all your thoughts and prayers!