Thursday, July 30, 2009

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!

Tuesday, July 28, 2009

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!

Sunday, July 26, 2009

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.

Saturday, July 25, 2009

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.

Friday, July 24, 2009

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.

Wednesday, July 22, 2009

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.

Tuesday, July 21, 2009

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!

Sunday, July 19, 2009

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.

Saturday, July 18, 2009

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.

Friday, July 17, 2009

Ty's Evening

Mom and Dad drove down from Ohio today to spend some time with us and peek at Ty through the nursery window. Mom went with me to feed him this evening and was able to come in because there were no other babies in the nursery. She got to give him his supplemental formula bottle after I fed him. He opened his eyes for her and grinned when she told him Grandpa does the spoiling with extra food. It was a very cute grin.

Ty's numbers went from 18.1 this morning to 18.6 this evening. These were not the results we were anticipating and are disappointed. At four days old, this is no longer a toxic level but quite high considering all the treatment he has had. He is under 4 levels of photo therapy and a supplemental feeding with each nursing session. So this evening, the decision was made to add I.V. fluids for one more additional measure to get his numbers down. He needs to be off all the therapy and at 14 before he can come home. Our optimistic goal of having him home on Sunday is not looking all that promising now. These little guys all do this on their own so there is no real way to predict how quickly Ty will recover.

Happy Anniversary Superman!

Greg fell 25 feet 9 years ago today. We've always celebrated him on this date but this year Ty is trumping our celebration....Greg's okay to celebrate his news instead. Ty's numbers dropped from 19.6 to 18.1 in the last 24 hours. They anticipate that he will drop significantly today as he is on the right road for treatment now. If the numbers do drop by this evening's draw, they will start weaning the photo therapy from 4 units to 2 to see if he can maintain or still drop in bilirubin. They have also given me the all clear to resume breast feeding with formula supplements because they believe they have his hydration levels under control and the estrogen levels are a minor contribution to the blood issue that caused this situation. Yesterday morning his weight was down to 7lbs 8oz and today he weighed 7lbs 11oz.

We also want to wish Greg's parents a Happy 45th Wedding Anniversary today...

The Superman party photo was from our celebration 2 years ago and the other is a photo of the sign Greg fell off in 2000.

Thursday, July 16, 2009

Evening update

Ty's doctor called this evening with his latest blood test results. In 12 hours his bilirubin dropped from 21 to 19 which indicates that we are on the right track with his treatment. He will continue being under the photo therapy lights and fed formula until his number is below 14. Our best case scenario is bringing home with home health care on Sunday. We pray that day arrives quickly as this was one really hard and emotional day. The blessing is that he will be okay in the long run. The tough part is that he learned last night that crying made them get his mommy and I am not able to be there for him.

I took this photo of Greg holding Ty for the second time yesterday when he took the opportunity to burp him. He studied Greg's OSU emblem on his shirt with intensity. Greg thinks he knows a good thing when he sees it already....

Please pray for Baby Ty

This was one of the toughest days. I had to leave Ty in the hospital and come home without him. His bilirubin count climbed to 21 from 14 in 24 hours. This is highly unusual. They have put him on formula for the next 24 hours to see if the estrogen in the breast milk has been a contributing factor. The initial bilirubin spike was linked to a blood disorder in my blood that was attacking Ty's blood. At this point they've doubled the number of lights for his photo therapy and changed him temporarily to formula to see if they can get the numbers to come down. A new blood draw will be done this evening to check the progress before determining if he needs to be transferred to Kosair's Children's Hospital for extensive blood cultures and specialists who can help determine what else could possibly be going on. It is so hard to believe he is sick since he is so big, content, feeding well and overall has the sweetest disposition. We are praying that this is the last of our little bumps in the road for him. Everything about this pregnancy has been a "borderline" issue. We are so tired and ready to have our family at home and getting into a healthy routine.

Wednesday, July 15, 2009

Not home yet

Ty is not out of the hospital yet. We found out yesterday that he has a high bilirubin count. The treatment is to have him under lights (UV I think) as much as possible. He is staying in the nursery 24/7 in an incubator under those lights. The only exception is when he feeds. Sherri is staying at the hospital with him because he is eating about every 2-3 hours. Hopefully the numbers will be good enough in the morning and we can finally bring him home.

Monday, July 13, 2009

Ty is here !!

Sherri and I had a nice morning on the patio. She had "pop tarts" and I finished my coffee. The weather was beautiful and her contractions started up again after a long night. She was feeling more uncomfortable as the morning wore on and by 11:45 or so we got checked into the hospital. Her contractions were pretty strong for a couple of hours. The doctor broke her water at 2:25 and Ty was born at 3:02. He was 8 lbs. 7 oz. (2nd biggest behind Makenna) and 22 in. long. (the longest by an inch and a half or so). So much for the little 5-6 lb baby that the doctor was talking about ! Sherri and Ty are both doing fine and hope to come home on Tuesday.

Thursday, July 9, 2009

15 years and counting.....

Greg and I celebrated our 15th wedding anniversary today. It has been a wild ride! We are so blessed and sometimes feel we've lived a lot more life than 15 years could possibly contain together.

I had my 38 week appointment today and discovered I have not progressed since last Thursday despite all the laboring I have done in the last week. Apparently this is classic for a posterior lying baby. I am going to be working with a chiropractor in hopes of moving him before my scheduled induction on Wednesday, July 15. We are praying to avoid medication and a c-section.

On a really fun note, Greg's office threw him a surprise baby shower last night. They had a beautiful cake and lots of Greg's favorite foods. Ty got some cute clothes, a homemade blanket with Tonka trucks on it, a cute little truck, a large box of diapers (YEAH!) and some bath items. Greg loved the camouflaged pants....they are so cute. It was such a fun don't expect people to celebrate the fifth baby! Greg says they like excuses to eat in his office....either way, we are grateful.

Friday, July 3, 2009

Tummy O' Ty

37 weeks 3 days....Ty is filling his current residence to capacity.

Thursday, July 2, 2009

Life as we know it

Last night the dog chased a skunk and lost the, that is a powerful odor! Lauren and her friends bathed him outside in tomato juice and he had to spend the night in the garage with the door slightly vented to air it out too. What an adventure. I pray he has learned a valuable lesson and won't be chasing any more black and white "kitties"!

This morning our van broke down on the way home from Erin's last day of summer school PE class. Greg gave up his morning of sleep to work on it only to discover the issue is bigger than anticipated. We have a friend coming over tomorrow to determine if the $1200 estimate on repairs is needed. We are seriously praying it isn't.....lots of unexpected bills lately. We tend to be the "Murphys" of "Murphy's Law".

I had my 37 week appointment today and found that I am 2cm dilated and 80% effaced. Things are slowly moving along. If he doesn't arrive on his own, I will be induced on/around the 14th as a result of the amniotic fluid levels. I pray he cooperates before then. I spoke to Greg's mother tonight to wish her a happy birthday and discovered that Ty was her father's nickname and his birthday was July 8.....this year that date would be 07-08-09....I think that would be a really cool birthday! I am feeling really good these days. All the contractions I was dealing with from 19 weeks on have subsided and my energy is back. I am sleeping better (most nights) and enjoying the reprieve in temperatures/humidity. I honestly cannot complain. I have felt far worse earlier on in this pregnancy so I will happily hang in there until Ty is ready to announce his birthday. Kate asks several times a day when that will be. She is so anxious to be a big sister and cannot believe we don't know what day he's coming.

My parents and sister took her family to Gulf Shores Alabama this week for a vacation. My beautiful nephew, Mason is two years old and refused to get out on the sand all week because it was messy. They enjoyed the pool and some time on the beach but Mason was clearly not happy on the sand. Last night they told the boys they'd be going home today and Mason said he missed his toys. When they asked him what toy he missed, he said his "sandbox"! There is a reason that child is so beautiful!