Memory Lane 8/10/10

BACK TO MEMORY LANE 8/10/10

(we had our diagnosis of a laryngeal cleft, were waiting for another swallow study to assess it after Sloane was on reflux meds, and we were starting discussions as to what kind of feeding tube sloane would come home with: a nasal feeding tube or a surgically implanted stomach one)

hi all, i have found a bit of a groove with sloane. our days are so busy. she feeds every 4 hours which sounds spread out except i pump 25 mins bf feed, do a check up w/ nurse and then start the feeding tube feed which lasts 1 hour and 20 minutes (we have to hold her upright while this happens bc of acid reflux) the process takes more than 2 hours and then starts again...we are busy girls!! 

i wont say it isnt exhausting and im not getting much milk which makes the whole process discouraging. breast milk is what sloane needs right now bc it digests faster and she needs the antibodies from me to help her with all her procedures. i just called the ob for a prescipt. to help w/ milk production. the lactation p. here are baffled but also blame it on PCOS, placenta abruption, crash c-section, blood loss, stress, lack of sleep and the fact that sloane is not nippling and i am just pumping......not sure why they are baffled that seems like a lot to me. LOL

i have been going home to sleep some nights when i like the nurse. its hard to do the guilt but i am so much better with her during the day when i get 5 hours straight through. the nurses push you to go home bc they say when we come home we wont have the luxury. alan is wonderful, he stays some nights so i can go home w/o worrying. its been working out that i go home around 10/11/12pm and come back for 5:30am to make the 6am feeding. some nights if alan works in smithfld, he is here early enough to do the 6pm feeding which is nice:) he is wonderful with her. its funny, he is not afraid at all but i am at times. and as far as the changing of diapers and swaddling...he is much better but we knew that would happen w/ mr. clean.

sloane has caught on to my arms. she knows them and only wants them. its so funny..she cries, i try to settle her and she wont have it until she is in my arms and then she just smirks and smiles...LOL she is a little shit already....i love cuddling with her ALL the time. we are trapped in a 10x10 room so my arms is where its at!!

today, was a hard day bc the 23 weeker that came in coded a few times and i dont think she is going to make it by the look of the room right now as i type. she is across the hallway from me. the scene is not something i care not to see. there are so many drs. working on her. i feel so badly for her parents. everyone here looks at each other the same way. im sad and thankful at the same time. sloane is healthier than lots of babies here but she is still in the NICU which is hard to accept..my baby is sick enough for a lenghty stay in the NICU on one hand and healthy enough to come home someday. i will never look at life the same after this experience for a lot of reasons. 

she weighed in at 7lbs 1 oz last night. very exciting!! she is big girl. another big girl came in today who is 2 months and her mom has been inserting the nasal feeding tube so im going to be chatting with her about that tmrw. its easy for the nurses to say its easy. i want to hear what a mom has to say about the process. i am very worried about it.

i miss you all. i have been trying to get outside once a day, again if i trust the nurse. its hard bc i need to like the nurse, i need sloane to be okay and i need the energy to walk out. we have the bouncy seat here so we have been trying that out. and bc she is big girl ive added some stimulation to her room. the preemies cant have that so we are lucky..we play music now. 

i started getting some returns done bc the seasonal clothes she got wont work for her by the time she comes home. its been fun to shop for her :) i hadnt done that. carol has been working on "pinking up" her unisex room at home bc i dont have the time now and i know when we get home i wont either thats for sure. 

depending on the swallow study results next week....the plan is that when we come home we will have visiting nurses, ot and speech at the house so we will be busy...

i wish one of you was a NICU nurse...LOL it would make me feel so much better to have someone in the family to help me with managing it all. 

thank you for the emails, texts, food and prayers. i know you all keep offering to do stuff for us but everything is getting done..i will ask when i need it. god knows i am a bit lost most days actually very lost. having a newborn was shocking enough (i thought i was prepared) but being here has put a new spin on motherhood for me. 

alan is all about germs as we all know so he has no tolerance for anyone touching sloane right now. we cant afford for sloane to get any other kind of illness. thankfully we are in environment that doesnt exactly welcome guests so it makes it easier on alan and i to protect sloane. i know our parents are dying to hold her, but right now it isnt an option. i cant imagine what the germ situation is going to be when we come home. 

can you believe on thursday..itll be one month since ive been home. im like an inmate who gets released from jail and doesnt know how to assimilate in the real world. when i am outside i am wandering around. i dont even know what tv is anymore...LOL thank god for dvr; itll save us when we are doing night feedings and need something to watch.

xo me