We spent another fine day with Ingrid. Another routine day!
Ingrid's doctors decided to up her breastmilk intake to 12mL today. I think it was a good sign that they did not spend very long in her room during rounds today. Her only real issue is feeding.
We still have a long way to go and she will likely need another 24 hours at 12mL before we increase her feeds again. As Ingrid's nurse pointed out 8 to 12 is a 50% increase!
Ingrid's omphalocele is changing noticeably - it is firmer and appears to be scabbing over. We only use one 5 by 9 piece of Xeroform these days.
Ingrid tolerated her 5mL feedings so the doctors decided to giver her 8mL per feeding today. Daddy tried to negotiate for 10mL but we finally agreed to take it slow.
During rounds the doctors made it clear that Ingrid's main focus right now is working up to full feedings (50-60mL at a time).
When pressed her doctor said that if all goes well we could take Ingrid home (to grandma and grandpa's house) in two weeks! The last 3 or 4 days we would spend in the transition unit to prepare Ingrid for discharge.
So now we wait and pray that she continues to tolerate her feedings well. We want to take her home so badly!!
Not much to report today. Ingrid practiced sucking down 5mL of mama's milk a few times. Mommy held Ingrid for most of the day while Daddy watched World Cup.
The long slow process of working up to full feedings is very difficult for us as parents. We want Ingrid to be ready to go for it but we don't want to stress her out and backtrack so we defer to the doctors' regimen. Ingrid's omphalocele continues to improve - Kate says it is drier and firmer today. (Daddy wasn't there for the dressing change today.) We continue to remark about how much smaller it looks.
Thanks to everyone for the continued support - the phone calls, the cards, the prayers and good thoughts. This would be so much harder without you!
Progress! Ingrid was upped from 3mL to 5mL per feeding! 5mL is about one teaspoon. It is a long, slow process and the only thing keeping Ingrid in the hospital. Once she is able to eat full meals on her own she will be able to go home (at least to grandma and grandpa's house) until she is big enough for her omphalocele surgery.
We worked on feeding her by mouth today. She did pretty well but it's hard when we have to wake her up to feed her. There is nothing like watching those cheeks moving while she's sucking down some of mama's milk!
Her doctor said that if she tolerates 5mL then we can up it to 10mL by the end of the weekend! Of course we must remind ourselves that this is Ingrid's show and she is calling the shots.
The cardiologist said that she is basically recovered from her coarctation surgery and that if it weren't for her omphalocele she would be going home.
Ingrid's O is definitely getting smaller - today we used only one piece of Xeroform to cover it. It has gone from softball-sized to baseball-sized.
We have our routine down now: We arrive at the hospital by 8:30 am and wait for rounds. During rounds we get to talk to the neonatologist in charge of caring for Ingrid. He and his team discuss Ingrid's progress and decide what needs to be done each day. The current focus is getting Ingrid used to food in her stomach.
On that front, Ingrid had three feedings while we were with her today, none by mouth. And she had easily half a dozen poopy diapers. That means her plumbing works!
During the time between feedings we hold Ingrid (and change diapers.)
At 3 pm we change the dressing on Ingrid's omphalocele - at this point we are quick and confident. Everyone agrees that her O looks smaller than it did last week. We use 2 pieces of Xeroform to cover it, but now we can almost cover the whole thing with just one piece. Each piece is 5" x 9".
We also met with a hematologist today because some of Ingrid’s blood tests suggest that she may not have a spleen or that it isn’t functioning properly.All the doctors assure us that this is not a big deal and if her spleen isn’t working (or if she doesn’t have one) it just means that she will need to be on prophylactic antibiotics for a number of years.
We are encouraged by days like today but we keep reminding ourselves that everything must happen at Ingrid’s pace.
Yet again Ingrid teaches us that nothing comes easily in the NICU.
She seemed to tolerate her feedings yesterday, but last night was a different story. She spit up some and some just sat in her stomach. She also had some blood in her stomach and in her stool so she was put on Zantac to soothe her digestive system.
We are eager to get her eating full meals so we can take her home but Ingrid keeps telling us that she has to go at her own pace. Her doctor assured us that no baby in her position tolerates their feeding the first time.
After a 12 hour break we tried feeding her again and she seemed to do well. The doctors decided not to giver her anything by mouth because she is breathing too quickly, afraid that she couldn't coordinate the breathing and swallowing fast enough. So, her noon feeding was sent directly to her stomach and was not there at 3 pm. (Her nurse sucks out the contents of her stomach before feeding to see what's there. It looks harsh but she doesn't seem to mind.) Prior to her 3 pm feeding there was virtually nothing there which means she was digesting her noon milk.
Both Mommy & Daddy held Ingrid for several hours today but she got a little fussy this afternoon. Now that she is off morphine she is very alert when she is awake and she is awake for longer periods of time. We make faces at each other and sing and play with toys - regular baby stuff!
Edit: Meanwhile back at home Anna is having a great time with Grandma and Grandpa!
Ingrid is now off of her morphine drip! She had been weaned down to 3 micrograms per kilogram per hour which is a ridiculously small amount - the nurses didn't think their pump could be set any lower. So now she is off almost all medications except for Tylenol and antibiotics.
We continued to work on feeding - she's up to 3 mL each time. She still isn't able to do it all by herself so she did get some pumped directly into her stomach today. But, like yesterday, she sucked down her whole meal after her 3 pm O-dressing change.
Mommy and Daddy held Ingrid a lot today and we were able to take many smiley baby pictures.
I've included this last picture for people interested in Ingrid's omphalocele. As you can see she has quite a bit of skin growing up the sides. We will continue to dress her O as it scabs over and becomes hard to the touch. Ingrid will be discharged from the hospital at some point this summer and then we will take care of her at home. She needs to grow larger so there is enough space in her abdomen for all her organs. In six to nine months she will have surgery to completely fix her O.
We still have a long way to go and she will likely need another 24 hours at 12mL before we increase her feeds again. As Ingrid's nurse pointed out 8 to 12 is a 50% increase!
