Friday, June 12, 2009

Important health lesson

Well, I’ve had some time to process yesterday’s appointment with Dr. Scaife, pediatric surgeon. As those who read the earlier post will know, I was terribly nervous about this. For good cause apparently. The entire appointment was a health lesson and very much like taking a band-aid off very quickly.
I went in that appointment feeling pretty dang knowledgeable about what I believed was going to be the basic scenario. Of course, on the ride to Primary Children’s, I wrote down a page of questions but truly felt I had a grasp of the basic anatomy for Ireland’s condition. WRONG. WRONG. WRONG. Now, I’m not going to fuss at my fellow bloggers of this condition or my beloved CHERUBS, but there was quite a bit that I learned and I was totally thrown off. There is a lot of talk about stabilizing the lungs and immediate ventilation once our CDH babies are born. Well, not so much on the ins and outs of why. Obviously I knew that she’d have (hopefully) one healthy lung and one that would need time and healing. I’ve learned all about the actual herniated condition of her diaphragm and the fact of problems with the stomach and bowel being in the chest area….well, not so much about how I had this image of a very small hole when in actuality it is probably more like ¼ to ½ of her diaphragm is missing.
Anywho, I’m going to do my best to give a bit of a health lesson. Our surgeon was very good on explaining this not just once with a drawn picture and much pointing but a second time because I apparently needed him to act as if our blood were different colored cars to understand the path a little better. ….here I go. Dr. Chanda at your service. First off, think of the path of the blood going from your heart to lungs for oxygen, some filtering of carbon dioxide and acids and back down to your heart and then sent throughout your body. For me to apparently get this basic concept, we used the idea of cars going up blue, getting serviced beautifully and coming back red. This is what we all need…nice red cars. Well, for a fetus, the blood doesn’t go to the lungs to get precious oxygen but to the placenta. There are extra paths (or shunts) that exist in a fetus’s heart to facilitate the sole purpose of blood to go from the heart to the placenta and back again for this oxygen. These extra paths/shunts tend to break themselves down and just sort of go away within a day or so of birth due to no more placenta. Obviously once the fetus is born, the cord is cut, the placenta is birthed and thrown out. The fetus becomes a baby human and is ready to breathe. Well, sounds great, maybe we’ll just have one lung and need help breathing with the other. This is what I (in my infinite wisdom) had thought. Hmm, so wrong. Our little newborn CDH babies will immediately be born with serious high blood pressure. Once my baby Ireland takes her first breath, her little heart will realize that the lungs are not quite doing what she needs, so the heart will do what it’s naturally been doing for the past nine months and seek out those little extra paths/shunts and go look for the placenta. Problem. Big problem. The shunts are still there and haven’t magically disappeared so the blood will go there but obviously isn’t going to find that precious oxygen supply from the placenta. She’ll also be breathing in our air and will have carbon dioxide and acid trying to figure out what to do. Basically, we have a big damn mess going on! …Thus, the need for ventilation for oxygen, medications to sedate and relax Ireland, ways to stimulate/relax the stressed out heart and a way to clean out this carbon dioxide and acid. What is natural and so taken for granted by all, will end up a major issue for our little CDH babies.

So, when our babies are born, we’re NOT so worried about the size of the diaphragmatic hole or what is or isn’t inside the chest cavity. We’re worried about calming down high blood pressure enough to be able to handle a major surgery. Within 24 to 48 hours, we’ll know if ventilation is enough or if we have to go to ECMO (big bad bypass machine). Remember my idiocy of having to relate blood to red and blue cars? Well, our babies are in serious need of red cars. Any perfectly healthy newborn will have 100% red cars all of the time. We in the CDH world will be seeking them out and monitoring them like crazy. Our babies will have a hell of a time settling into this new world outside of the womb. You could have the greatest test results and percentages throughout your pregnancy, bottom line, we need little fighters that are thinking of oxygenated red cars that are devoid of too much carbon dioxide and nasty acids. We want them on that ventilator and all those other tubes doing the best they can with whatever healthy lung tissue they’ve got. We need them calm and sedated. We’ll worry about ECMO only if the red cars are ridiculously low and the lungs just can’t do the work at that time. We’ll worry about the surgery when she can handle it.

Well, hope that wasn’t too confusing or even too elementary for those that have walked before me or those learning just like me. I’m sure there are way better technical ways to explain all of this but this is what worked for me. I didn’t necessarily feel that I went back to square one but I was shook up a bit. Also, maybe others have explained this and I was just too dense to get it. I don’t know really. I was in a sort of Utopian mind set that all was going to fair well and with haste. Truth is we’re looking at a typical situation of anywhere from 2 to 4 months at the NICU. The doctor did say we could have an exceptional case of just one month but he wanted to be realistic. I honestly appreciate that. And another thing that I thought was that I’d steadily sit at my precious baby’s side day and night on constant vigil. It was discussed that I can feel free to do this but that they recommend going home and getting on a schedule. This was discussed a little more than just a sentence thrown in the wind and after some basic thoughts on what is best for our situation, I understand the logic of this. Plus, I have a husband and son that will need me during this time as well. And, I’m sure that I’ll need them. We’re trying to figure out how to afford the drive back and forth and are considering monthly passes (about $170 apiece) on what is known as the ‘UTA’ system out here. Basically, I take a sort of train to Salt Lake City and then transfer to a track system (like 3 connected trolleys) that takes you straight to the doors of Primary Children’s Hospital. We’ve decided that we’ll take this route our next few trips to the U of U to get me more comfortable with this. We’re also trying to decide if I should try to get a hotel for the first week or two that will lead up to Ireland’s surgery. We figure these will be the hardest weeks. We really don’t know and welcome advice from those that have walked before us here.

Anyway, we ended up touring the NICU. I was teary through most of that and was in a sort of fog and still processing what Dr. Scaife had said during our surgical consultation. It seemed nice, aesthetic for sure, and just a wee bit sad. The charge nurse spoke rapidly and was giving us a ton of facts that I’m certain I’ll recall later on. She was awfully nice and I do remember her saying that Ireland will be assigned two nurses that will work 12 hour shifts and be at her side constantly until this is deemed not necessary.

Well, I’m going to stop posting for now. I felt my little health lesson was important and hope that others will spread this bit of news to those of us still awaiting the arrival of our CDH babies. And for those just supporting us, this is what we know now. It’s a lot to think about.

9 comments:

  1. Hey Chanda,

    I was going crazy also with what will truly happen when our baby's are born so I created a document describing the shunting of blood due to the hypertension issue. Not sure if it will help or not, but please feel free to check it out on our blog. It is in the upper left hand corner where it says "Click Here". Then, a couple of pages down under Pulmonary Hypertension.
    http://thestuddardfamily.blogspot.com

    I totally know what you are feeling after that appointment. Hang in there as the processing of your visit today will take a few more days.

    Shawn

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  2. Hi Chanda. I had read about all the issues you were describing before Max was born, but I don't think I ever posted about it. I think what you wrote was a GREAT description that will hopefully be able to prepare you a little more for what to expect. It is so scary sitting there and not being able to control things and just watching monitors to tell how your baby is doing. Hang in there. I am not sure how close to the hospital you live, but I would definately look into getting a room or something. The hospital should be able to suggest some places for you. Alot of hotels offer discounts to hospital patient families (at least they do here). Also, is there a Ronald McDonald House. They were going to let us stay in it, but we only lived like 20 mintues from the hospital, so we passed. We did end up staying overnight at the hospital some nights. It is so hard to leave sometimes. Hang in there and we are praying for you!!!

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  3. Shawn, I'm going to have to check with you about figuring out how to post your document over here. If anything, maybe the CHERUBS site should have it. There is a serious LACK of information on this little topic and it so important. ....and Ashley, goodness knows I feel for you even more. I don't enjoy admitting it but you tend to compare your ever changing diagnosis with all of the other blogs out there to see if your stories compare and that'll give your baby a better prognosis. I very much believe it is truly in God's hands and that we haven't a clue until our little ones get here. ...I think this is the hardest part. There is no true percentage to how well they are going to do. I'll continue to think positive but I believe my initial appointment that this exact statement was made and funny, as we go on, we're just clinging to anything positive we can. That is fine and dandy, even serves a purpose in keeping our spirits up...but truly, it's in God's hands and his alone. That is probably the biggest wake up call for me. ....Chanda

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  4. Oh Ashley, I also wanted to point out that we live about 40 or so miles from the hospital (anywhere from a 40 minutes to an hour or more commute depending on traffic). It seems long but the U of U actually takes care of the needs of most of the NICU babies for 5 surrounding states (utah, wyoming, montana, nevada, and also idaho...i'm pretty sure these are the ones)...so even though the commute will not be fun for us, I can't imagine being from one of these other states and not having any choice. We'll definitely be looking into any hotel deals for atleast that first week or two, but the "UTA" system seems like a viable option for us. We're definitely going to start making calls to see if there are discounts for even this....can already see the $$ just floating away. And I do remember the charge nurse saying that when there are times it's suggested for us to stay that they'll make sure there is a sleeping room available. ...it is comforting to know that they do the best to accomodate us. ...hopefully, we won't look like beggars when we start calling around for discounts and such!!!!

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  5. Chanda,

    You can read everyones CDH story but you're right, Irelands story will be different. There might be similarities but no two stories are the same... Your description is great! My daughter was diagnosed at birth I feel we were not told anything about her condition and until recently I had no idea all that came along with CDH.

    Keeping you in my thoughts!

    Shauna - Mom to Addisen LCDH 12/10/03

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  6. Chanda-

    You DID do a great job describing it. I did the same thing, when I was pregnant with Kaden. I read EVERYONE's blog that I could find and I felt I was prepared for just about anything. That is all you can do, because it is in God's hands. I strongly agree with Ash--you will not want to leave the hospital. Craig & I live only 45 miles from UCSF, but you could not have dragged us more than a block away while Kaden was in the NICU. I am thinking about you and praying for precious Ireland. I so pray for an "easy" rollercoaster ride for you and a very short stay in the NICU!! Don't ever give up hope--these CDH babies do amazing things! Much love from us, and let me know if you need anything--anytime :)

    KKuehl@ffcmtg.com

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  7. Chanda you did a great job on the health lesson. Our little ones are usually the critically, most sickest babies in the NICU. Every CDH baby is so different and the medical care and intervention they will need. You are in amazing hands at Primary and they will do anything for your baby and family. There is a Ronald McDonald House close by that we stayed at, at times. I can find their contact info. if you want. They ask you give a small donation if you can(used to be $5-$10) a night to stay there. The rooms are very nice. Everybody shares the kitchen, but you have your own area to keep your food. There is also laundry facilities available. Plus, so many individuals donate meals for dinner that were very yummy during a difficult time. Call the hospital and ask them to send you a list of every place that will give you discounts for travel, motels, ect... When you have the list, I can tell you which places to stay away from and which ones are good. We had to split our weeks between WY and CO and we stayed in some good hotels and some very bad. It was very hard to leave Ian, but I knew he was in good hands. We did what we had to do to survive. The Ronald McDonald House is very good, you can ride the bus to the hospital or park a car there and use that. They are very accomadating to the entire family. The first few weeks the hospital will give you a sleeping room during critical times and especially the days before and after her surgery. A social worker will be assigned to Ireland and will help you out tons to navigate through all aspects of life of having a baby in the NICU. The nurses and doctors do not have an issue with you sitting at Ireland's bedside anytime of the day. The only time they asked us to leave was during shift changes and rounds on other babies. They did encourage us to get out and do things though. Chris and I came down with a bad cold shortly after Ian's surgery and we were sent home until we were all better. They do everything possible to keep our little ones on the right track to recovering and healing.

    Praying for Ireland.

    Much love, Tracy

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  8. Before our daughter was born I remember them talking about pulmonary hypertension, but never really fully understood the extent of the horrible PPHN monster. I am happy to hear that you have educated your self and found such a great way to explain it.

    Praying for Ireland.

    Love,

    The Miles Family

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  9. You description was great. I remember looking into all I could before Nayeli was born. I self educated myself with blogs, and the support groups. We live 45 minutes away from UCSF and we were lucky to stay at our friends vacant apt. a mile away. It was hard for me to leave the hospital. We were at Nayeli's bedside from 7am til 11pm sometimes midnight every night. We only left to sleep, shower and eat. I would sit there read, sing and give her pep talks. I also wrote in my journal. the nurses insisted on me taking walks of fresh air but I couldn't. I also had a laptop next to me to keep the blog updated. We have you in our thoughts and prayers.

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