Sunday, December 09, 2007

just when we thought we were done

I spent one day- so completely happy- so glad to have my baby born this incredible weight off me. By all accounts he was perfect. I decided to go down with him for his ultrasound. It took 2 hrs. and at the end the radiologist said she didn't really know what to make of the findings and she was headed off to call my pedi and one of the neonatalogists. I returned to the room with him unsure of what to think - and within na 1/2 an hour a neonatlogist was knocking on our door. Basically he explained the finding was portal vein thrombosis. The left portal vein was completely occluded. It was a again a quite rare and unusual finding and treating was again a difficult call. Best case scenario was the clot will clear, worst case scenarios- lobular atrophy, portal venous hypertension, and potential need for liver transplant. Well as you can imagine this was the last thing I wanted to hear after all I had been through. He said he was going to go contact a peds hematologist and a peds GI and come back later in the day and we would try to come up with a plan. We immediately called one of our friends for a blessing for each of us and especially for our new baby. About 2 hrs later the neonatalogist returned with the peds GI and hematologists- basically they told us that the literature doesn't show that anticoagulation therapy generally makes a difference but given my history of thrombophilia and some consulatation with some experts who have researched this a lot at Toronto sick children's hospital they felt treating with lovenox was probably better than wait and see (the other option) So within the hour he was taken to the NICU- where they began full assessments- following his platelets to be sure his levels were acceptable given how clots can shred through them. They wanted to do a repeat abdominal u/s the next day and a head ultrasound to be sure things were clear before starting lovenox. I was still inpatient and would go up to the nicu to feed him every 2 hrs through the night and the next day. Then on discharge I got a boarding room in the back of the NICU where I stayed for the next 8 days- leaving the hospital 1 x for 1.5 hrs to go home and basically pack up for my stay and bring some family pictures and a name tag for his crib. I would try to be up and showered each day and by his bedside for morning rounds. Where I would stay all day. We began the lovenox (2x a day injections). We did daily labs and serial ultrasounds, and he was spending some time under the bili lights for jaundice. At his ultrasound the following monday the radiologist reported there was now "some flow" in the left portal vein -- which was very exciting-- everyone had prepared us that we should not expect to see any improvement after 3 days ( i had read the studies and knew time to resolution generally ranged from months to years) and really all they were hoping for was that the clot hadn't become worse and was appearing stable. I was so excited to hear the news-- knowing any flow is better than no flow. They again slated a repeat for later in the week-- again the radiologist said you can't really see much in a 3 days interval and so we were pleased to hear the official word in his report was-- at least the same if not better flow. WE know there is still a ways to go until normal but we are happy to have seen any progress especially so early in the game. We finally reached the right therapeutic (antifactor xa) level with his lovenox dosing and so they felt he could come home and be followed outpatient. So smart daddy-o and I were trained in the mixing of his meds- quite a process given lovenox is not dosed for someone weighing 7 lbs). So we don't know what the final outcome and prognosis will be-- these next few weeks and months will be critical as we see what happens to the clot. They do feel the left portal vein issue is related to the umbilical vein varix and the big question that remains for everyone is whether the clot is related to the heritable thrombophilia that I have? does he have it? Trouble is it can't be tested for in a baby. So from here out in the immediate future it will be weeks of us giving him 2x daily injections, testing his antifactor xa levels, repeat ultrasounds and follow up with the GI and hem. and of course the emotional roller coaster continues- not knowing what the outcome or long term results will be but we are taking it day by day. I think when you have worked in medicine you have seen too much (esp as I worked with liver and transplant patients at UCSF) you sometime wish you were one of those parents who didn't really understand all the things the doctors said or you read in the articles. But we just have to keeping praying for the best and we know many prayers have been answered so far and we are grateful for so mnay of you who have been praying for him. As you can see he is the sweetest most darling baby! Here he is at 10 days old! we're excited to finally have him home! we'll trry to keep you updated.

8 comments:

Nettie said...

What a trial! I am glad he is doing so much better and you can all be home enjoying your new family member!

GinnyBerry said...

I am so glad that you are both ok. I have been checking your blog at least once a day and praying for you. You don't know me but I do feel a connection because I have a clotting disorder. I didn't know about it and I had a stroke, DVT's, and bilateral pulmonary embolisms, and another clot (probably) on my iliac vein. The stroke happened on Mother's Day of this year. I had clots in my venous sinuse which caused the hemorrhagic stroke. Anyway, I am on coumodin for life now. And I never knew before that I had the clotting problems until Mother's Day this year. Wheh.

I have almost totally recovered. Good came out of my experiences because my sister and neice were tested and seem to have the same thing that I do. (probably protein C) The hematologist said that all of my blood relatives would have a 50-50 chance of having the disorder. I
It sounds as though you are really on top of all of the issues and very knowledgeable about things. That will only help your son. I know that you know that you have a lot to worry about, but you will be able to make better decisions for him because of your knowledge.

Oh, yes, I lost my 2 week old son seventeen years ago and I suspect that the issues with my pregnancy may have been related to the clotting disorder that we didn't know about.

I am so overjoyed that both you and your son are ok. You are right, take one day at a time and try to enjoy and savor each one.

GinnyBerry

Char said...

HUGE (((HUGS))) and prayers coming your way, Les!

Zoe said...

Leslie, I am so happy for you all and your new precious baby. He truly is soooo beautiful and all of that hair . . . I can't believe it!!

I am sorry to hear about these complications. I am glad that there has been some progress. I hope that you and your family are at peace. We will remember you in our prayers. Just know that we are thinking of you! Take care!

GinnyBerry said...

I forgot to tell you about a good website, clotcare.com. They have a lot of research articles and other resouces and information that might be useful for you.

Chel said...

He is adorable and he will be in my prayers.

Gabriela said...

Smart Mama-you and your sweet family will be in my prayers. He is adorable.

Amy said...

Congrats on your new son!! And I'm praying for you that all goes well in his treatments.