First of all, again I do not have many details on my cousin, Brooke's, baby. My mom left me a voicemail saying that she would email me the e-mail from my uncle and then I will know more. Aunt Naomi, I'm sure you can clue us all in if you have time. What I DO know is that the baby girl has spina bifida and they are going to try to do an invitro surgery. Please keep this family in your prayers. I will definitely post more when I know more.
Here is an update and picture of Addison. The picture is about 1 week old or so. The update is long, but a very good update from her Momma. Thanks again to everyone for your prayers for these 2 special families! They truly appreciate it!!!
Now for an update...week #2 with Addison was more up & down than the first week & the start of week #3 has proved to be a bit trying thus far, but we are hanging in there. I can't remember exactly what all I updated on last weekend, but at the beginning of last week, Addison was having trouble digesting her food, so they had to back her way down on her feedings. They watched her really closely for an infection, but thankfully one never surfaced and after several days of reduced feedings, she started tolerating & digesting all of her food. They started gradually increasing her feedings again and she made it up to a whopping 11 ccs (which isn't a ton of milk..about 1/3 of an oz) but we were very proud of our little girl! The other thing that happened was when she started having trouble with her feedings, they had to move her back to a vapotherm breathing machine. It is a step back from the nasal canula, but seemed to help her to where she wasn't having to work as hard to breath. It was a bit disheartening to take that step back, but the drs thought it would help her to digest her food if she wasn't having to work so hard at breathing and it seemed to help with that. So all in all, we were thankful to make it thru those hurdles and are thankful that God protected her from infection. She ended the week looking more peaceful and calm than we had seen her since she was born. She just rested easily and seemed to be doing well. She even made it to the 2 lb mark a couple days ago! Getting to be such a big girl :).
This past Friday night started our latest round of trial. Addison started having trouble with her breathing and is requiring more oxygen than she has been over the previous 2 weeks. Like I mentioned, it started Friday nigth and when we got to the hospital Saturday afternoon, we tried our routine, daily hold time, but she did not respond well at all. Her oxygen level dropped way down, lower than it had ever been and so we had to promptly put her back in her little bed. Thankfully, once we got her back in her bed and laying on her stomach, she recovered quickly and was breathing a bit easier, but was still taking a higher level of oxygen to keep her breathing regulated. It broke my heart to not be able to hold my little girl, yet it was even harder to think that just because we got her out of her little bed, she started having such a hard time. It was a hard thing for this momma, for sure. Her breathing continues to be an issue. Yesterday they started twice a day xrays, lots of blood work, and urine analysis in order to make sure she is not getting an infection. They also decided to go ahead and start her on antibiotics as a preventative measure just in case her trouble breathing is being cause by an infection. So far her blood work continues to come back negative for infection, as does all of her urine analysis. Her xrays are a bit "hazy" as the drs say, so they aren't sure if it is the start of an infection or just her lungs being in such an immature state. The drs are saying that they do not think she has an infection, but at this point it can't be ruled out completely. It was incredibly hard for me to hear them using the terms "infections" and "pneumonia" about our little girl. They will take another xray tomorrow and see how that turns out. They are planning to stop her antibiotics if they xray is improved, if it is not, however, they will probably go ahead and treat Addison for pneumonia and giver her a 7 day dose of antibiotics. Also, they have stopped her feedings for a few days to see if that gives her the extra energy to work on her breathing, as well as not complicate matters any further. Another thing the drs are saying is that her lung might have collapsed a little since she is so young & immature. If that is the case, they will probably put her back on the sipap machine (one step back) in order to give her the extra boost to open that lung up. It is disheartening to think of her going another step back, but if it means no infections and helps her to breath easier, then that is what we will do!! So, that is where we are for now. It has been a bit of a trying couple days as I ache for my little girl and wish there was something I could do to make her breathing easier. I miss holding her, as well, but cherish the time we spend with her and cherish being able to at least touch her & talk to her. We are just praying fervently that God keeps her from getting an infection and that He helps her lungs to mature and grow quickly so that she can breath easier! We are thankful for the drs and nurses who keep a CONSTANT eye on Addison and have done a fantastic job keeping tabs on all the changes & potential issues.
I think that does it for now. We just want to thank you ALL again for praying for Addison & our family. It truly means the world to us, especially in days such as this. Please continue to keep her in your prayers, especially in the next 24 hours as the drs make decisions on the best way to treat her breathing issues. We are not sure what they will decide or what the xrays will show, but we know God is good and He has even this situation in his hands. A side note--also pray for her IV's--she is having a hard time keeping an iv in for longer than 24 hours, which poses a whole other set of risks. Her veins are just so tiny that an iv is hard on them. Thank you again, for your faithfulness in prayer and for passing this along to all of your family, friends, and their churches. We feel God's presense on us daily and we are so thankful for each person who covers our little girl in prayer each day. God is seeing us faithfully thru and giving us strength that I didn't know we had.