Well Emily is able to eat from a bottle or breast. She is completely in control of the situation because of her heart. However there are a few ground rules. She can only have breast or bottle and if she chooses breast she can only be there for 20 minutes tops. As you can see this can cause all sorts of problems. She prefers to go to breast but when she doesn’t get all of her feed she wants the bottle. So they have resorted to giving her a pacifier dipped in a sugar solution to try to calm her down. It works… sort of.
Other then that Emily is doing well. To look at her you wouldn’t think that she is as sick as she is. She sleeps a lot but all babies do that. She is normally only awake when it is time to eat. She also knows which people she can demand attention from and which ones she can’t. I have noticed that around shift change she demands attention from me even though I have been there all day and she hasn’t wanted that much! Silly Emily!
I am told by talking to different people that people are not looking at the sidebar on this site. I have included various things and links on it recently. Including Emily’s registry, an appendix to this blog with more detailed information of stuff on this blog, a way you can get prints of our pictures and see more pictures then we have on this blog (if you want earlier photos let me know), and just today I posted my friend Sonia’s blog. Those who don’t know Sonia and I met about a year ago when we were both battling infertility. She got pregnant with twins last November and ended up having many of the same problems in her pregnancy as I did in mine. She delivered at 23 weeks on April 4, 2006. She sadly lost her daughter but her son Isaac is doing very well. He came home after a 6 month hospital stay. Having known her has made me feel like I am not the only one that has went through all of this and I believe has made me even more thankful to the time I have with Emily.
Emily looks great…like a little princess in her red dress!!!
I came across your site from a caring bridge link. My daugher too is a micropreemie (23wkr) who will be 2 in January. You Emily is quite the fighter! I will pray that she continues to grow stronger each day. If you’re interested, check out our message board for preemie moms who blog. There are so many wonderful ladies there to help support you on this journey! http://groups.yahoo.com/group/PreemieBlogMoms/
Julie (mom to Halle, 23wks + 5 days, 473 grams)
I came to your site via Sonia, Jong and Issac. I have been watching Emily growing and praying for her. Yesterday I tried to explain to my 10yr old son exactly how tiny Emily was when she was born. The best I came up with was “she was lighter than the container of butter I buy!” At 10 he found it hard to comprehend a baby being so small.
My prayers are with you both and Emily.
God Bless
Evelyn
Hi Jennifer and Tony. I come to your site via Sonia & Jong and Isaac.
I have never experinced what you are going through. Through both this site & Isaac’s, I am able to gain a tiny insight that I otherwise would never have gotten. Thank you!
Thank you for allowing me the honour and privilege of sharing this difficult time with you.
Evelyn
Canberra Australia
Your little one was a pure angel last night….after her five hours of play time, that is! And I never did crawl back and get that boppy! I was thinking about it on the drive home. SOMEONE wanted to monopolize my time and I got a little sidetracked. Not that I mind! Anyway, I hope you have a great weekend and I’ll see you on Monday.
Luv, Rebecca
I am also a reader of Sonia, Jong & Isaac’s blog.
Emily is a beautiful little girl, and anyone can see she is a strong little fighter! I will pray for her, and I am sure she will be coming home soon!
Emily is beautiful. I can honestly say I have walked the road that you are walking now. My daughter (whom is 5 today 12-9-06) was a 24 weeker. She weigh 1 lb 3 ozs and she was 12 inches long. She had so many ups and downs but it was well worth it. (will give you a few gray hairs LOL) I will continue to pray for her. If you ever want to talk please do not hestitate to contact me .
Your little girl is beyond “pretty” — she is utterly beautiful. I think about your family daily and will continue to keep Emily in my prayers.
I found your site throuh another preemie blog and have now read all of the journal entries. So much of it is very familiar. My 9mos old, Dakota, was born at 25wks and spent 8mos in the hospital battling many things but mainly severe BPD and pulmonary hypertension/cor pulmonale (The two are very closely linked and were used interchangably with our daughter. The difference is that pulmonary hypertension is usually reversible as opposed to cor pulmonale which is more serious and usually permanent. This is my understanding.)
Even after 4 rounds of steroids Dakota would be extubated for a while only to be reintubated. She ended up needing a tracheostomy and she came home with a ventilator and oxygen among other things. She’s now weaning off of the ventilator but will need it until she’s about 1yr old. She also has a severe oral aversion and doesn’t eat anything by mouth. She has what’s called a g-button.
I’ve been pumping for her this whole time and I also tried reglan and experienced horrible side effects. One of our neonatologists suggested I try domperidone and I’ve been on it for the past 3mos. It works wonders and has no side effects. There are some compounding pharmacies that will make it but most people order it from a pharmacy in Canada.
Your daughter is such a fighter. She’s beautiful and has a strong will to live!
If you have any questions at all about the pumping or anything else I’d love to talk with you. We keep a journal for our daughter at dakota-rose.livejournal.com.
Your Emily will be in our prayers,
~Emily
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