Dear Friends and Family,
Well, it has been a roller coaster. Every day, Julia’s discharge would get pushed back another day or two. Julia had to go back up to the NICU the day after I wrote my last update because they put a PICC line in her to administer antibiotics. Her veins were too small to get an IV in (that’s my fault because I think my veins are also difficult to get an IV into! She got my veins.) They were afraid she had a bacterial infection… but she didn’t. So after 2 days they stopped antibiotics and she came out of isolation. I was so happy about that because I could hold her without wearing a robe, gloves, and face mask! The day she came out of isolation I think I spent an hour just touching her head and face and kissing her. Nothing is worse than not being able to touch or kiss your sweet baby. Her reflux test came back normal. But the nurse was a bit skeptical because it was almost too normal. Most babies reflux a bit. They ended up reducing the quantity of milk given to her each feeding and increasing the amount of formula given to increase calories. (They wanted to reduce fluid so that she didn’t end up with too much fluid in her heart or lungs.) However, she started losing small amounts of weight. This was quite a mystery since her calorie intake was higher. So they didn’t want to send her home if she was losing weight. Then her sodium levels dropped slightly due to her being on the diuretic. So they needed to figure out how much sodium medication to give her to balance her out. Again, more delay. Meanwhile she has stayed in the NICU for monitoring instead of going back down to the Intermediate Intensive Care Nursery. But the last couple of days, she has been improving in all areas. Her weight increased and she has been looking pretty good. The nurses have been working with me to teach me everything I would need to know for going home. I passed all the tests! Both Bob and I have successfully inserted the NG tube down her nose into her stomach. I have learned to use a stethoscope to listen to her stomach as I push air down her NG tube into her stomach to ensure the tube is in her stomach (I have to listen for this very subtle gurgle sound which is the air passing into her stomach… not easy!) I have gavage-fed her several times. As well as the other various normal things they go over with you to make sure you know how to care for a baby. So yesterday, they told me that Julia was set to go home today. I was cautiously hopeful…
But today, she came HOME! It was very strange putting her in the carseat and carrying her out of the hospital! I felt like I was “stealing” her! I also felt we should move quickly lest they change their minds and ask us to come back! Haha! The car ride home was a bit nerve wracking since I could not see Julia as I was driving (Bob was in his car since he met me at the hospital.) Every stop light (and it seemed that I hit every one!) I would listen to make sure Julia was still breathing! But we arrived safely home. We were greeted by Mattie, Grandma Sally, and via Skype: Bob’s sister and 2 kids. Mattie was very excited to have her sister home. She wanted to hold her (which she didn’t want to do in the NICU) and kiss her and help with every little thing like feeding her or changing her diaper. Julia also brought home with her a gift for her big sister: a baby doll and a “Big Sister” t-shirt. And how did Julia do? Julia was the most awake I have EVER seen her! She was awake from probably 3:30 to 5:30. Her eyes were wide open and she was looking around everywhere. I think she was also happy to be home! I also tried breast feeding at her 5:00 feeding and she seemed to latch on and nurse for a good 15 minutes or so. So there is hope for breastfeeding! I’m just glad to have her home so we can work on it several times a day. She is on a tight schedule of eating every 3 hours around the clock. So we won’t be getting much sleep for a while. I also have to squeeze in pumping after feedings. But as soon as she starts gaining weight consistently, we’ll hopefully be able to go longer stretches at night. I’ll be taking Julia to the pediatrician tomorrow and on Monday. She’ll be going quite often at the beginning so she can be monitored closely. She will also see the cardiologist in the next week or two for her heart to be monitored as well.
Prayer Requests:
•Julia consistently gains weight
•Julia continues to improve on breast feeding and taking the bottle (so she can eventually have her NG tube removed.)
•Julia’s heart to remain stable so she can have a month or two at home to get stronger before surgery
•For strength and endurance for Bob and Val as they launch into the season of sleep deprivation
•Patience and persistence for Val in working with Julia on eating- that I don’t get too discouraged
•Transition for Mattie as she now has to share her parents with her sister
Praises:
•For Bob’s mom, “Grandma Sally” to be here. She is a fabulous distraction for Mattie
•That Julia did indeed get to come HOME today!
•That Julia seems to be doing well so far at home. (I think she’s happy!)
Thanks for keeping us in your thoughts and prayers! I’ll keep you updated on how Julia is doing. I’ll also be posting more pictures to Julia’s blog in the next day or so. So check it out.
Much love to you all!
Val, Bob, Mattie, and baby Julia
(We’re finally all together as a family!)
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