Another full day....

We got a late start this morning, believing we were on the upswing with Ty's hemoglobin levels. I enjoyed sleeping in and having Lauren's pancakes before heading to Floyd Memorial for lab work. They were backed up and their machine was not functioning properly so it was 12:30 before we discovered Ty's level dropped off again to 7.5. I was so disappointed that I literally cried in front of the poor lab tech that delivered the news. We headed to Kosair for Ty's third transfusion. It went more smoothly than the last two but we didn't get home until just before midnight again. It just makes for a very long day. Poor little Ty knows that every time the door to our room at the hospital opens he's going to be picked on so he fusses. Otherwise, he just sleeps through it all. The doctor we worked with today (who issued orders completely different than the previous two doctors ordered) indicated to us that they can suddenly drop levels up to three months into treatment. That was not the news we wanted to hear, but at least we won't get our hopes up too much with the next improvement.

I ran into my OB/GYN at the hospital and had time while we waited on Ty's lab results to discuss his condition. She shared with me that she screened my blood when I was in the hospital for preterm labor and the anti c antigen test was still negative at that point, 30 weeks. So, they tested me three times before I was admitted for labor. She saw the results from that test and called the pediatrician to warn her to watch Ty because the antibody levels were "sky high". Greg and I believed the doctor had dropped the ball, when in reality, they did all they could. She is contacting the high risk specialist to inquire if something more could be done in case they run across this in another patient.

Ty's weight concerns were also laid to rest today. The doctor's office on Wednesday incorrectly converted the kg to lbs. Ty weighed an impressive 9lbs 7ounces today! With the correct conversion, he really weighed 9lbs 1ounce on Wednesday. I had doubled his formula supplement because I was told he hadn't gained weight in over a week! So, he's going to be grumpy, but his supplements will be weaned back again!

Erin started high school today!

Our smart and beautiful daughter has entered the world of public school after 5 years of home schooling. She will be missed more than she knows as she takes on this next chapter of her life. She has already completed summer school gym classes and made a lot of new friends. Our youth group at church has been another avenue for her to make contacts she'll appreciate as she enters such a large building. Please keep her in your prayers (Mom too) as she adjusts to her new environment and expectations. She is excited and will thrive, I am sure.

"Cautiously Optimistic"

We went to Kosair with the expectation that Ty would be staying for a blood transfusion today but his hemoglobin was 8.6, up from 8.4 on Monday! This is the first time he's increased after dropping! We hope it means he is stabilizing! He has another blood test on Friday to monitor. We aren't out of the woods yet, but this is a great sign that things are starting to improve. Thank you so much for the prayers! They are working!

Hemoglobin Count

Ty's number was down to 8.4 today so we are going to Kosair on Wednesday with the expectation that he will need another transfusion then. He's handled the last two so well we anticipate the same again. Last week, his numbers stayed so much stronger we pray this is the last one and that he levels off after this. So, Erin and I are on our way to find a walk in hair salon to get much over due haircuts today. We can't make plans for anything more than a day or two in advance and that doesn't work for our salon!

School starts for Erin on Thursday and I am not ready! Where did our summer go? I can't decide if I am ready to start school for the other girls that day. I would like to stay on schedule with Erin but can't imagine being ready this week!

The Boys!

It's a rough life! Greg, Ty and Brutus recovering from a full weekend of visitors. Ty's hemoglobin was still 9.7 on Friday so we got a weekend off from hospital visits. We start again on Monday. It was good to see everyone finally but Ty was rather fussy, which is not typical for him. He will be 4 weeks old tomorrow....time flies when you are busy!

Grandmas and Grandpas Galore!

Since we had a weekend free from hospitals, both sets of Grandparents came for a visit. We were excited to also introduce Ty to his Uncle Brad, Aunt Jessica and Little Miss Elizabeth Grace "Lizzie".

Just for fun

A Great Report/Weather Maddness

Ty's hemoglobin was up to 10.7 today! His weight was up to 8lbs 8ounces too! We don't have to to back until Friday morning for another CBC. If he drops to a low 8 or below by then, we will have another transfusion that day. If it is a high 8 or low 9, they will plan on one Monday rather than the weekend....hallelujah! Historically, Ty should have been down to around a low 9 or high 8 by today, so the last transfusion appears to have helped him.

Crazy weather entered the area this morning, making my commute to the doctor rather challenging. We got 4 inches of rain in an hour! It was wild to see all the different roads completely washed out in flood water. There are properties around us under water. The bridge by our house has water coming up to it....it is the same bridge they told us would be washed away in a big rain storm! They can't get that fixed fast enough for the residents here! We were all gunning it across to make sure we didn't also end up washed down the creek. Honestly, there is no end to the excitement in our lives.

Normal Day....YEAH!

I had a normal day today....Since Ty didn't have to go anywhere today, I made lots of insurance, billing and UPS H.R. calls this morning to try and make headway on the bills that have started rolling in for Ty. When I called two weeks ago to have Ty added to our insurance, the computer tossed me out of the system and didn't add Ty....so everything that is being billed is being denied. Good times. Anyway, I dealt with some knowledgeable people who are trying to be helpful. Praise God....it will be a process so getting people who know what they are doing is half the battle and we're there....

So, on my "normal" day, I was able to write in Ty's baby book and adhere some photos into his scrapbook. My friend, Stacey gave me some pages she laid out for him so the process was quite simple and the results are beautiful.

I did have to call the hematologist's office to make Ty's next appointment and was told by the nurse practitioner that we should anticipate a long day when we arrive tomorrow because they won't be surprised if he needs another transfusion as soon as tomorrow. I can't imagine we are in that situation again already but will know more after his CBC. Bless his heart, he needs a break.

"Emergency" Blood transfusion?

Dr. Rezaei called today at 3pm to inform us Ty's hemoglobin as down to 7.4 so he needed to be admitted to Kosair immediately. We were in his room by 4pm and the finally started the transfusion at 10pm! Honestly, we are beyond frustrated by that hospital. The "rules" have changed since last week? This week, they tried to admit him for 24 hour observation, stating it was standard. We didn't have that last week. This week, we had a resident on her first day and an on-call doctor who is unfamiliar with Ty's case who made decisions over the phone rather than assessing Ty himself. We finally got home at 2am because they waived the lab work afterward that was required last week......

One nice thing that came out of today's ordeal was the IV team member who was able to get one started on the first try. He didn't have to have it in his head this time. We also had the same nurse we liked last week. She was great again. She went to bat for Ty when the resident was trying to rush the transfusion and administer it in two hours rather than the 3-4 hours he needs to have it safely given. Honestly, we sat there all day and in the end, she wants to rush it and get us out of there?

Quick update on Ty

The hematologist tested Ty's blood today and he is down to 8.6 from 9.2 Tuesday. He has another blood test Saturday. We pray we aren't in for a repeat of last weekend. If he gets through the weekend without a transfusion, he will go back to the hematologist on Monday and they told me to plan on a really full day. We hate that he is still going through this but know that he is in good hands for treatment and will be through this in a few months. I don't anticipate being finished dealing with the insurance company until then either!

Jamy Coulson made this quilt for Ty and we've waited for a quiet afternoon to get some photos of Ty on it....we love it! He is two weeks old and I had been waiting to capture those precious little toes with the camera until he was done getting blood tests. Since it appears he'll be 3 months old before he's through this, I just did it and love them!

A Very Long Day

At 8:30 this morning, Greg and I took Ty to Floyd for a CBC and bilirubin. His CBC was run immediately and came back with a hemoglobin of only 7.3 so we were sent directly to Kosair where we were told residents were waiting for us. We checked in at 10:30 and waited for an hour for his room to be cleaned. Once we were settled in his room, we waited for a few hours until a resident finally showed up to start the transfusion process. We discovered that the blood bank needed additional blood, his IV took two different NICU nurses to get started and it ended up in his forehead. It was not easy to watch them insert that or look at it through out the rest of the day. They finally started the transfusion at 4pm and it went well with the exception of the IV backing up 30 minutes into the transfusion. They finally wrapped up the transfusion at 7:45 and we waited an hour for them to rerun his labs and get the results before they discharged Ty. His hemoglobin was up to 10.1 when we left but they cautioned us that it will likely drop again because that was a fresh blood draw after the transfusion. We finally arrived home at 10pm. Thank you to Kirbie and Miss Billee who delivered Panera Bread for us this afternoon! And also to Jennifer and Kim who offered dinner. And also to Jamy who kept kiddos last night for us as well as Tracy who kept Makenna all day today. It really helps to have the support of friends like you!

We did end up meeting the hematologist that has been working with our pediatrician the last few days and we really liked her. She is also an oncologist and heads the bone marrow transplant program at Kosair. She was so knowledgeable and willing to educate us on what to expect for Ty. It appears this all stems from my OBGYN dropping the ball on the antibody disorder I have in my blood. They should have been screening me throughout the pregnancy to see when it reached a high level. At that time, Ty should have been taken early to prevent this from happening. Greg and I had a lot of time to discuss this today and realize that as frustrated as we are with the the OB, we know God's hand has remained on Ty's life. He could have died in utero. If he were taken early, he could have had additional complications....we just don't know how it would have turned out so we count our blessings that in 12 weeks or so, this ordeal will be over and Ty will be healthy. We are blessed because we saw plenty of babies the last two weeks that won't be healthy.

The hematologist, Dr. Cheerva did prepare us that this may not be Ty's last transfusion. He is pretty sick with high levels of antibody in his system so he may need more to get him through it. She did tell us that it could last up to 12 weeks but that we will be done at that point. Just knowing there is a light at the end of the tunnel helps us cope on days like this. It is tough to see Ty go through it and the human error aspects are really difficult for us.

Quick update on Ty

Dr. Rezaei called tonight to prepare us for a transfusion tomorrow at Kosair Children's Hospital. We took him there to have his blood "typed" so they could order the blood and have it on stand by for a possible transfusion. Seeing the antibody levels in his blood confirmed for her and the hematologist that his CBC tomorrow morning will most likely be very low. At this point, Dr. Rezaei believes we need to be working with the hematologist because Ty's case is so unusual that she doesn't have the specialized skills to handle his case alone. We are in good hands but are concerned about his health. We will know more tomorrow but she's prepared us that he may be getting a blood exchange rather than just the transfusion.

Seeing them draw 5 tubes of blood today was enough to break our hearts. This little baby has already been through so much. We know we need to keep perspective and know that there are far sicker babies out there but this is our baby and it hurts to see him go through this. We are also dealing with fear of all the unknowns. Hearing he will be okay in the end is a comfort but we'd love to know when the end will be here. "Trust in the Lord with all your hearts and lean not on your own understanding. In all your ways, acknowledge him and he will direct your paths".

Happy Birthday Makenna!

Makenna is 9! Her birthday plans for a pool party in Ohio had to be canceled as a result of Ty's health so we ordered an extra special gift to make up for it....Rebecca Rubin, the new American Girl doll. She was literally shaking as she opened her package. It was rather unexpected! Last night, Erin hosted a mini spa party for Makenna and one little friend, Brooke. They had foot spa treatment, pedicures and manicures. All the girls had a great time.

Our Sweet Baby

Ty's appointment didn't go very well today. His hemoglobin has dropped from 10.1 on Wednesday to 9.4 today. He has slowly dropped 1 point every other day and has now been referred to a hematologist at Kosair Children's Hospital. We will go in tomorrow to have his blood "typed" so they can order blood for a possible transfusion. He has to have his bilirubin and CBC redone Sunday morning at Floyd Memorial to see if it has dropped any further. If he reaches a 7 or an 8 in hemoglobin, he will be getting a blood transfusion. Dr. Rezaei has been wonderful about staying on top of Ty's case. She followed up with me yesterday, even though it was her day off and gave me her cell phone number for the weekend.

Theresa and the boys came for a visit with baby Ty

Theresa brought the boys to see Ty and celebrate Makenna's birthday. We know how to drag out a celebration around here! Ty's bilirubin numbers dropped from 12.6 yesterday to 12.1 today. He is under no treatment so this is really good news. The best news is that he gets a break from going to the hospital for blood work tomorrow! We go to the doctor again on Friday and will likely have another test there, but one day of not driving to the hospital and not having my baby's heel stuck is a reprieve.

Greg's parents came for a visit

Greg's parents came Monday to see Ty and celebrate Makenna's ninth birthday. Ty was under the lights for a few hours of their visit until the doctor called with the exciting news that his bilirubin number was down to 11.3! He was allowed out of the lights for the rest of the day to see if they rebound for the next blood draw. We hope not. It was fun to finally hold him, love on him and get to know him after a week! He was also finally able to wear some of the clothes he is already outgrowing.

Makenna loved her birthday presents. The shocking neon nail polish was a lot of fun, especially when Greg asked if it had an "off switch"! She got an outfit she liked from Justice and her American Girl magazine subscription renewed. She asked Grandma several months ago if she could have her homemade mac n cheese and sloppy joe for her birthday dinner so Carol made that for her tonight as well....topped off with candy pizza and we were all enjoying Makenna's birthday dinner!

My parents also celebrated Makenna's birthday this past weekend since our plans to have a pool party in Ohio with her friends had to be canceled due to Ty's birth/health. She loved getting her new movie and bathing suit cover up with shopping money too!

Home Sweet Home

We finally got little Ty home at 2pm today. His bilirubin number was 12.6 this morning so they sent him home with his own little tanning bed and orders to add bottles to each of his feedings for a few more days as well as labs to be completed every 24 hours. We are all thrilled to have him here. My parents had to leave before he got home but were able to see him in the window this weekend. Greg's parents are coming tomorrow. We are thrilled to finally be able to show off our sweet little boy.

Good News!

Ty started the day with a bilirubin level of 15. He ended it at 14.6 with half the light therapy! If he maintains or drops anymore tonight, he will be heading home tomorrow!!! We are so excited. The nurses started the process to establish light therapy in our house with either home health care for labs or we will be making daily trips to the hospital for lab work. Either option is fine with us as we are making 4 to 5 round trips to the hospital now for feedings. Since he was doing so well today, the nurse helped me take him to with nursery window with his IV's so his big sisters could see him. He had his eyes opened and showed off a bit with big yawns, grins and lots of facial expressions. They loved seeing him again after a very long week. We are trying to remain cautious about anticipating discharge tomorrow but I am finding myself as restless as a kid the night before Christmas....I just can't wait to have my baby home.