Monday we had another appointment with Neonatology. This was much more positive than the last meeting. I even managed to make it through without bawling my eyes out, unlike last time =)
We discussed how my birth plan is slightly contradicting. I have that we want aggressive treatment but that we would also like her with us as much as possible. This of course is not going to be possible if they are aggressively treating her. I told her that my birth plan is sort of the best case / worst case scenario. Best case she will only need slight help breathing when she is born and then she will be able to be with Steve and I. Worst case they aren't able to help her and anything they try would only be doing things to her rather than for her and then we would want her back so she can be with us should she pass. The middle is all gray. If she has to be away from us to be helped then of course that is what we want to happen. Quinn is the boss once she arrives and she will tell us what she needs and where she needs to be.
Other than that we talked about some treatment options that she might need should she show that she is going to bless us with being around for any length of time. Over all I am very happy with how the meeting went and the next time we see them will be when Quinn is here.
Today I had an appointment with my mid-wife. At 34w3d I am measuring 39 weeks, yikes! How much bigger can I get? I am hoping not much!!! Quinn's heart sounded great and she kicked Theresa as soon as she placed the heart listening wand thing on my stomach =) She is a feisty one, my baby girl!!
Other than that not much has been going on. Still so busy I feel like I can't breath. Saturday is another busy day but Sunday I should FINALLY be able to stay home all day and relax, I hope!!! Next weekend is Steve and I's weekend at the Ritz! I can not wait to just hang out with my honey and relax!
Emotionally I think that Steve and I have both been doing pretty well. There are still tears that come pretty much daily for me and I still have bitterness that I fight down with all my might but we are doing well. I did have one day last week that I just couldn't keep it together very well. Everything that my Bug did just made me think of everything that Quinn won't get to. Even giving Ash a bath had me in tears the entire time. My sweet little Bug stood up all wet and soapy and gave me a big hug when she saw me crying. I must say that I have the sweetest baby girl! I am so thankful for her. Without her I don't know where I would be. She makes me smile even through the tears and there are some days that she is the only one that can do that!!
Physically I have been feeling like crap. My back is terrible and this child is killing my ribs to the point where when I cough I feel like I need to hold them in place or they will break! I am exhausted but that is my own fault because I stopped taking my iron pills after they made me sick a few weeks ago. I did buy some more this past weekend and am starting to try and take them again. Sleep thankfully is not a problem. I can't really move very well once I lay down but I am able to fall asleep and stay asleep for most of the night so I am very thankful for that! Heartburn is also a big issue that sucks right now! I am popping Tums like candy. Must be all that hair they say that she has - although her sister had a lot of hair and I never had heartburn like this!!
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1 comments:
I hope you are well. I know the journey so well as a result of giving birth to a child with T13 many years ago. You are likely aware that some children with this disorder live for many years. They are very limited, but very happy.
The big question is how do you know if your child has a chance? While not definitive, if your baby does not have holoprosencephaly, there is an increased hope for longevity. Also, If there is no cardiac condition that is imminently fatal, there is hope. The children who do not need to be resuscitated at birth tend to do better in the long run. There are many transient conditions, such as hypoglycemia (low blood sugar) that should be tested and treated for, if you desire. These conditions can be fatal. There is a large network of T13 families on Facebook and also associated with the living with trisomy group.
Finally, you should be aware that doctors are generally extremely negative as there is nothing in the medical journals about the quality of life of these children, beyond their disability. They have a special purpose, regardless of longevity.
I wish you the very best.
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