Ramblings

Both boys got their blood reports back yesterday and they are "stable." Braden went down from 10.3 to 9.0; and Brock went from 9.3 to 9.6. I am not really sure what this means. I was hoping both would be around 11 or 12. Hopefully we are not going back down. I guess this is why we have them checked weekly. Thank you God for modern day medicine.

You would not BELIEVE the amount of mail we receive EVERYDAY from these doctor/hospital visits! We have a stack of papers about two inches thick explaining our benefits, or bills from each "encounter." You would think these guys were ninety and had been suffering from a slow, debilitating illness for years instead of just nine weeks old and something relatively minor. I truly think a small forest will die before this is all over. We have received paperwork for our paperwork. Why can't insurance companies and doctors' offices just use email? I opened the mailbox one day to find a large manila envelope from our insurance company with a thick stack of EOBs in it. I thought, "Finally! They figured out how to send them all together!" But, alas, no. The mail yesterday had two separate envelopes from them. Again. Good grief.

Poor Brock and Braden. They have had their blood checked so many times they barely even cry anymore when they get stuck. They have had it done more times in the last nine weeks than Sydney has in over three years. She has been stuck around six or seven times in her life, not counting shots. The poor little brothers passed that number when they were in the NICU. Since then they have both had blood drawn around ten more times, with multiple sticks at some of the draws. These poor little boys! And the end is still not in sight for them! This has just made me realize what the poor little kids that get cancer must go through. Why do children have to suffer, God? This world is not my home...

Team Brothers

In the past, we have participated in the March for Babies. Friends of ours had a little girl, Amberly, who was born premature and lived for three weeks and they created a team that we have raised money for and walked for every April. 

This year, we are forming our own team, Team Brothers, for our precious little miracle babies. I would like to invite anyone who reads this blog to participate in the walk with us this April. We will be raising money for the March of Dimes and if you would like to donate money, I will try to figure out a way to link you with their website through my blog. This is an organization that has been near and dear to me for many years as an observer; I simply never thought I would be a recipient of their good works. I did not know very much about the past of the March of Dimes until recently. 

This organization started in 1939 to find a vaccine for polio. And since then, they are responsible for almost everything related to prenatal and newborn care. 

They are the ones that developed the PKU test that every baby has to prevent some forms of mental retardation. 

They are the ones whose research led to discovering that alcohol consumption during pregnancy leads to birth defects. 

They are the ones that led the campaign for the creation of Neonatal Intensive Care Units. And I thank God every day that they did. 

They are the ones that launched a campaign in 1994 urging women to take folic acid during pregnancy to prevent birth defects. 

They helped secure passage for the CHIP program which provides healthcare for underprivileged children. 

They help provide prenatal care for women in third world countries. 

And they have provided funding for so many, many others working to eradicate premature births, genetic birth defects, mental retardation and so much more. This organization has touched everyone who reads this blog in some way. Some a lot deeper than others. If you want to know more about these amazing people who are helping babies, please check out their website

http://www.marchofdimes.com/home.asp

The March for Babies in Amarillo takes place on Saturday, April 25 in Thompson Park at 10 am. I would love for everyone that has been touched by The Brothers' story to join us if they are able. I will have t-shirts made up for Team Brothers and if you let me know your size, I will make one for you. If you live out of town and still want to help, let me know and I will figure out a way for you to help. I am planning on making this an annual event for our family and would love to have you and your family join us.

Who Knows?!

After our visit with the hematologist today and a subsequent explanation from my husband about what said hematologist said, I now understand this hemolytic anemia a lot more clearly. Tony likened it to how our bodies respond to a virus. We get a virus, say chicken pox. And our bodies immediately spring into action creating antibodies that fight this foreign body attacking our body. Some viruses take only a few days for our bodies to create the necessary antibodies to kill it; some, like chicken pox, take longer. But once our bodies create the antibody for any particular virus, we can never get it again because our bodies have the antibodies needed to destroy it. 

Most likely, when I was pregnant with Sydney some of her blood made its way into my blood and my body thought it was something it needed to create antibodies to destroy. She may have had this same thing the boys have, but she didn't show any clinical signs of it because the antibodies my body created weren't strong enough to harm her. But when the boys were placed in my womb, my body responded quickly and started producing the antibodies it thought it needed to destroy the "virus." These antibodies then got into Brock and Braden's blood and started attacking to protect me from them. Since they were introduced earlier in the boys' bodies, they had a much stronger effect on them than they did Sydney which is why we are having the hemolytic anemia.

What all this means is if we ever got pregnant again and the baby (or babies) had the same blood type as Brock and Braden, the antibodies would start attacking even quicker and the baby could possibly die. This also means that the jury is still out on fraternal or identical twins. Sorry, Sandy. 

And I had the chicken pox. Twice.

Second Verse Same as the First

Braden is doing great since his transfusion last week. But Brock started showing signs of hemolysis this week so we had his blood checked on Friday. The doc himself called me with the results and his hemoglobin was 6.9. We went back to the hospital for Brock to receive his blood transfusion. The hematologist met us up on the floor and told us we could go home as soon as he finished the transfusion. I was so happy that I wouldn't have to stay the night in the hospital again. So Brock got an IV in his head and they started the blood at 10:30 and we went home at 3:00 in the morning. Since then, Brock has picked up on his feeding again and generally seems to feel better. 

We will take both boys to the hematologist's office tomorrow for the first time. I think he will probably want to run blood work on both boys since they both got it. He is fairly confident the boys are identical twins since they both had this very rare blood complication. It is possible they are still fraternal, but not very likely. If Brock hadn't gotten it, they would be fraternal twins for sure. I may have been a little curious about this information, but I sure didn't want to find out this way. God has been with these little boys since before they were born and He is still a constant presence. We thank Him for saving both of our sons.

The Labs Are Back

Braden's nurse just called and gave me his blood work results from this morning's appointment. His bilirubin is down to 4.4 (Wonderful!) and his hemoglobin is up to 14.7!!!! Last Wednesday it was a terrifying 6.1, Thursday it was up to 9.9 after the transfusion, and now it is within normal range. Please join us in prayer as we thank the Great Physician for healing our son, Braden. We are almost 100% sure this horrific ordeal is over. Praise be to God!

Smiling Baby

It has been almost a week since Braden got his blood transfusion and he is doing great! He is eating more aggressively than he ever did before and is interacting with us as much as Brock does. He is almost a different baby. We can tell that he just feels better. A lot more energy and his coloring is almost normal. We are still on our knees thanking God that for that still small voice that saved Braden. What an incredible blessing our sons are! And their big sister, too!

We reached another big milestone today: Brock smiled at me for the very first time. It was about fifteen minutes before the next feed and I was trying to distract him from his hunger until it was time to eat. We were looking at each other and I was bouncing him from side to side saying, Shush, shush, shush, and turning my head making smily faces when it happened. He just all of a sudden looked into my eyes and his mouth turned into a smile. What a moment! I was wondering if they would smile this week since smiling starts around six weeks of age, but since they are preemies I wasn't sure if they would be a little behind on that. I guess not, at least for Brock! Maybe Braden will smile this week, too!

The Voice

On Tuesday, Braden was looking more jaundiced than before and we took him to the doctor because we were starting to get pretty concerned. He ordered blood work on him and called us with the results on Wednesday afternoon. His bilirubin (related to liver, causes jaundice) had risen to 14 and was down to 9 when he was in the NICU three weeks earlier. This was cause for concern, but his hemoglobin (level of red blood cells) was 7 and should have been between 12.5 and 16.5. This was cause for alarm. The pediatrician called a hematologist and they made a plan to recheck his blood on Friday morning. I was not comfortable with that decision at the time, but did not want to be overreactive, impatient, and not trusting of their decision. I should have been.

About six hours after the plan was relayed to us, Braden's coloring worsened and he turned very pale. His breathing was labored and rapid. That wonderful gift God gives to mothers in the form of the Holy Spirit that tells us something is wrong was screaming inside me. I knew Braden needed help and he could not wait until Friday. He needed help right this minute. Tony encouraged me to listen to the voice and call the doctor immediately. He told us to take Braden right to the emergency room. When Braden and I got there (Tony stayed home with Brock and Sydney), the room had about thirty people waiting and there were three people waiting to sign in. My heart sank. The ER was the last place I wanted to take my five week old preemie baby. We haven't even taken him out of the house yet! I just knew we were in for a very long wait. We signed in and went to the farthest corner of the room to isolate ourselves as much as possible from the scariness. Much to my relief, Braden name was called within three minutes; they had rushed him to the front of the line because he was so critical. They checked his O2 sats and they were in the mid-80s so they put on him oxygen right away. The ER doctor came in and I tried to explain to him that there was something wrong with Braden's blood and we needed to run labs immediately. He listened to me try to explain everything and then I think he finally called the pediatrician which is what I had been requesting since we walked in the door an hour ago. They started the IV to get the blood and then they ran the labs. Three hours after we walked in the door the labs came back and his bilirubin had gone down to 9 (good), but his hemoglobin had gone down to 6.1. Not good. Tony later informed me that a hemoglobin level at 5 is heart failure. Braden got admitted to the Pediatric unit. When we got to our room, there were five nurses getting all of his vitals when a doctor walked in the room. I assumed at first that he was the hospitalist, but it was actually the hematologist!!! Hooray, I thought. He explained to me that he had just been to the lab to review Braden's blood and it looked to him that he was having experiencing severe anemia due to a hemolysis of his blood caused by a reaction from being exposed to my blood during birth. Basically, my red blood cells were attacking his red blood cells and destroying them to the point that he almost didn't have any left. This caused his jaundice and then his labored breathing. The next thing it would start affecting was his heart's ability to function. In order to prevent this from happening, he explained, Braden needed a blood transfusion. The blood transfusion would give Braden's blood the boost he needed to give his body strength to fight against the incompatibility of our bloods. His body might have been able to do it on its own, but this would give him extra strength and time. I called Tony to relay to him what the doctor told me and his first response was, Thank God! Of all the scary, scary things this could have been, this was the very best one. He had considered this possibility but dismissed it because he thought Braden was too old to be having a reaction like this now. These types of things normally happen within the womb or the first week of life. This particular type is so uncommon they don't really have very much research out there about it. We still have go watch him very closely for the next week or so to make sure he doesn't relapse, but both our doctors are pretty confident this is what is was and that it is over. They discharged him yesterday afternoon because there was more danger to him staying in the hospital and being exposed to other illnesses. We went back to the doctor this morning and we will go again on Tuesday and Friday for more lab work. But hopefully, this is over.

The moral of this story is: Mothers, listen to the Voice. God gives us this gift for a reason and we have to listen to it. The Holy Spirit nudging our hearts is never something to be ignored or passed off. Please listen to this Voice whenever you hear it, because it is from Him. He loves us and is trying to protect us from whatever it is He is nudging us about. I thank God for the gift of the Holy Spirit and I ask that you join me on your knees to thank Him for saving Braden. Thank you, God, for saving Braden.