Monday, July 16, 2012

To whoever anonymously sent me this beautiful necklace: You brightened my day and have given me something that I will forever cherish. Words cannot express my gratitude. Thank you!

Tuesday, July 10, 2012

Chest tubes

I'm sort of stressed tonight but not too bad-this is nothing I haven't done before. When I saw Whit today based on how she was doing I had a sneaky suspicion she might need her right chest tube replaced (based on her own history/patterns and how the tube was slipping a little and the tube output was less, her retracting slightly, etc..) and sure enough when I called tonight she's up on her oxygen needs back to 4 liters and between 30-40% and breathing faster/retracting which means her tube is coming out-luckily they finally caught on and ordered an x ray. So they'll probably replace it tonight. ): either way they'll let me know. I swear I will make an excellent NICU nurse...but that can wait until my babies are older. For now, I will just say I have pretty jut Mother's intuition!

Sky-bee

I posted about Gavin the other day and today I've been thinking lots about my sweet little Sky. She is such a joy to have in our family. She's soo smart, chatty, independent, and kind. I love talking to her and spending time with her. I love watching her interact with her brother (when they get along!) and her Dad-they can have soo much fun when they play.

Lately I've been worried about her with all that's going on. Gavin is young enough that he has adjusted to Whitney pretty well in addition to me being gone a lot. Sky has struggled more the past 7 weeks. Gavin naps three hours a day and before Whit came, those three hours were usually time I had to spend with her one-on-one. Since Whitney came, I am usually gone at the hospital during nap time so my individual time with Sky has decreased. We have had to bounce the kids around to soo many different family and friends to watch them while we're at the hospital.

Sky has really struggled with her attitude and emotions-way more so than usual since her baby sister arrived and shook our world. There are times when I'm out of patience with her, and times when I have an overabundance of patience because I understand how stressful this all must be for her. I always feel guilty-when I'm at the hospital and away from the kids, or when I'm home and not with Whitney. I struggle constantly to deal with all the different emotions that our situation is causing me to feel. I can't imagine how my sweet daughter must be feeling and she can't express all her emotions quite like I can. I breaks my heart when I see her struggle. I pray that she will be okay through all of this and we will be able to have the necessary patience and to help her learn to express her emotions. For now, we'll take it day by day-the good and the bad!

Here are some recent photos of my adorable little sweetheart!

Breathing better

Whitney is breathing much better! They took her intubation out yesterday so now all she has is the tiny feeding tube down her throat. Once the intubation came out they put her on a bubble cpap machine at 5 liters. After a day on that and doing really well, try moved her from the cpap to a high flow nasal cannula at 4 liters (today at 12:30). She's done soo well the last few hours that they are moving her down to three liters right now!

We are very glad she is breathing so well in spite of the chest fluid-it still hasn't slowed down a lot, but it has slowed a little. We are giving it two weeks to see if the fluid will slow down and hopefully dry up. Since feedings (even fat free feedings) can aggravate and increase the chest fluid, they stopped feeding her for a week or two again until we know for sure the procedure worked and that the fluid is going away. Let's all keep our fingers crossed that the fluid will dry up! As for now, here is a picture that makes me smile!

Sunday, July 8, 2012

Poor Gavin!

Gavin had a cold a couple weeks ago and has gotten better, but last week I saw him tug at his ear a couple times. We tried to use our otoscope to take a look, but he had WAY too much wax in his ear to see anything. We even cleaned his ear with hydrogen peroxide and water (supposed to clean out the wax) and still couldn't see anything. This morning we woke up and as I was getting ready or church, Gavin was tugging and sort of cupping his ears non-stop. Luckily there is a Wee Care Pediatrics in Layton open all the time so Kyle took him in before church and met us there once he got done. The doc put a liquid stool softener in Gavin's ear and that seemed to break up the wax and sure enough he has a double ear infection. Poor baby! No wonder he has been crankier! We got him an antibiotic that will hopefully clear it up. It hard to believe this is his first ear infection and he is almost 26 months! He is such a sweet, funny, smart little boy and we are soo blessed to have him in our family! Here are a couple cute pics of my sweet baby boy: PS (pardon the nude photo-it was too funny not to post-We'r had to start putting onesies on him to avoid h undressing at night!)

Success!

Success!! Dr. Arnold was able to find the thoracic duct and embolize it ( close it off with glue!) He found that there was an obstruction at the top of the thoracic duct that was causing all the lymphatic fluid leakage. We're not completely out of the woods yet, but this is AMAZING news! Heavenly Father has definitely answered all of our prayers! We'll watch her chest tube output and it should decrease by half within the next few days and hopefully her intubation and chest tubes can come out soon-within a couple weeks! He did this same procedure in march and the chest tubes were out within two weeks, so this is the best outcome we could have expected! This is only the second time he has ever done this procedure, and he has only ever seen the condition three times (and he is an expert). We are soo thankful for modern technology, Dr. Arnold and Heavenly Father for saving our daughter!

Tuesday, July 3, 2012

More pictures

Here are a few more pictures of Whitty from the last couple days.