Wow! What a weekend!

Saturday was quite a day in the Elfstrand house. Timmy got a Saturday morning nap (meaning that Mama and Daddy got one too, finally!). Then a friend of a friend who we had never met before called us and said that they wanted to bring us some food. So she and her husband blessed us with food and prayer and groceries! What a huge blessing, and from people we didn’t even know! 

The feedings were really a struggle. The diapers were only somewhat wet, and I was really worried about hydration. In a last ditch attempt to avoid the NG tube (the one that goes up the nose into the tummy and just looks uncomfortable), I had a brainstorm that maybe I needed a nipple shield. It saved breastfeeding for us the first time around, so I figured maybe it could do it again! And just at that moment, another friend called to ask if we needed anything. So she bought some at Babies R Us and brought us some dinner as well. Another fabulous blessing! 

We finally started to go through the piles of paperwork that had been collecting, and we found that the California DMV didn’t appreciate our Idaho car insurance and had suspended our registration just yesterday. But that friend who stopped at Babies R Us for us happened to have an extra car available that she could loan to us! Another blessing!

In the end I found that even the nipple shield that holds such fond memories of getting breastfeeding really going for us the first time around could not save us this second time around. So we did have an NG feeding tube put in. It was hard to watch our little punkin’ be uncomfortable as the tube made its way to where it needed to go, but now that it’s in he doesn’t seem to mind it. And once the hard part was over, I had the most profound sense of relief, knowing that Timmy will once again be well hydrated and well nourished. Even though we haven’t had it in for even 24 hours, I am noticing improvements in his coordination and muscle tone as his body is slowly starting to get more of the nutrition and hydration that it needs. Yay God!

I also posted some recent pictures of Timmy on the photo gallery.

Yesterday’s Pediatrician Visit

Yesterday we took Timmy to follow-up with his pediatrician. We gave her the update on what happened at the hospital, along with a list of doctors that we would like to follow up with so that she can help get that process started. She was a great listener and patiently answered the questions or referred me to other people who will be able to answer them. 

We discussed the feeding tube and agreed that it is time for one, although the clinic didn’t have any ng tubes (the one that goes in the nose) to tide us over. I know that it sounds rather shocking to hear that he’s going to have a feeding tube, but I am convinced that it is really going to help. Right now, even if things are going “well”, Timmy spends huge amounts of time and energy eating. And although he hasn’t had a huge drop like he did at the beginning, his weight has been fluctuating a bit, rather than seeing a nice even increase. So I think it is going to free up his time and energy to do things like play and sit and roll over (and eventually hopefully crawl and walk) and gain weight. I’m going to push the doctors to let him continue to eat small quantities at mealtimes for the enjoyment of eating, but to depend on the tube for the bulk of his calories and nutrition. And once the surgery happens, you won’t even be able to tell that he has one unless he lifts his shirt.

So in the meantime she gave us samples of various soy and lactose-free formulas to try in addition to nursing and pumping. And hopefully that will get us through until the surgery.

Then in the evening, Marshall and I enjoyed a fabulous date. We saw Wall-E and went out to eat. Yay!

Hydration update

Nursing seemed to be getting better, but now it’s getting worse again. My body doesn’t keep up a good supply of milk with pumping alone. Timmy doesn’t like the soy formula, and even the good formula from Nana gives him hives. :-(

I have two friends whose children have feeding tubes, and they have encouraged me that they’re not the worst thing in the world. Both the mom and the grandma of a little boy with cerebral palsy said that he really likes it, because he knows it’s getting him the nutrition he needs. And he can still eat what he wants on top of what he gets in the tube. So it looks like that will be a topic of discussion for the pediatrician tomorrow. (We happen to have a follow-up already scheduled with her for just exactly when we need it.) If we go that direction, he’ll get a tube in his nose to get him through the weekend and then he’ll have some minor surgery sometime next week to put one directly into his tummy. It would be nice if somehow he could make it through the weekend to avoid the nose one, but he had one before (when he was in the NICU at 2.5 weeks old) and he can do it again. Either way we just want to be sure he’s getting what he needs.

Prayer Request: Hydration

Please pray for us as we make decisions about how to keep Timmy hydrated. This is more important for him than for your average kid. And while I believe that nursing is better for him, it makes it more challenging to know what he’s getting. Today his morning diapers were awesome, but the afternoon and evening diapers were really bad. I’ve been in touch with the doctor and we’ve gotten some additional fluids into him, so we should be okay for the night. But in the morning we’ll probably have some decisions to make. Thankfully the shipment of formula that Ingrid recommended arrived today from Mom E. We haven’t tried it yet, so we’ll see how it goes.

Working along

The goal these days is to make follow-up appointments with various doctors and to apply for medical aid. But Timmy’s tummy seems to be bothering him quite a bit these days. So until we follow up at the doctor later this week, Timmy has been napping in the swing and in my lap as I sit at the computer. This is the view of us from the computer’s built-in camera.

Quality Time

Daddy was showing Timmy some stuff on the computer. Pretty fun!

Rolling, rolling, rolling

Congratulations to Timmy! Last night before bed we did some tummy time and he rolled from front to back all by himself!!! He has done this only a few times before and not in quite a while. So we consider it to be a fabulous accomplishment! Yay, Timmy!

Also nursing is continuing to improve and my milk supply is slowly re-establishing itself. And thanks to more help from ladies from church, we have some food in the freezer, the house is more picked up, and we’re going on a date tonight!

Babysteps, babysteps, babysteps

Each day we seem to get a little closer to normalcy. For the first several days after returning from the hospital, Timmy could not sleep at all during the day. He slept fine at night, but during the day there was just too much to think about. Then he started being able to catnap in Mama’s arms. Then he took a nice nap at Lauri’s house. And now for the first time in quite a while, we did the nap routine and he fell asleep in his crib.

Also, since decided that he would rather work harder at nursing than drink the icky formula, he has nursed well twice so far today - and it’s only lunchtime!

So now that the punkin’ is sleeping, it’s time for Mama to enjoy a shower. Yay God!

Decision day for Timmy

Timmy has a decision to make today. We found some soy formula that doesn’t give him hives, but he doesn’t like the taste. It inspired him this morning to work harder at nursing. So today Timmy needs to decide to either take naps and get his milk from Mama every few hours until the supply is built up again, or else he will need to drink the icky formula. Pumping isn’t producing enough to be able to keep him going on bottles of pumped milk. So if he’s going to pull it off, he needs to sleep well to keep up his strength, and he will need to nurse well. We need to get over this hump so that we can begin the “new normal”.

Just what the doctor ordered (literally)

I spoke to Timmy’s neurologist yesterday on the phone briefly. I was asking about different formulas I could try if my breastmilk supply didn’t pick up. He of course encouraged me to keep pumping and that it will pick up. I do know this and have been through it before, but it’s so hard to have enough hands to pump when I’m trying to rock and cuddle my little one to sleep. The doctor also encouraged me to do anything I can to relax and de-stress, because that will have a big impact on my milk supply as well as on Timmy’s ability to rest. So when Timmy had trouble with his nap this morning, I moved Timmy’s swing into the bathroom near the tub, and I put him in it with his bear, his blanket, and his binky. I turned on a CD of Peter and the Wolf and Carnival of the Animals (currently set to repeat “The Swan” over and over again because it reminds me of my dad and is so soothing). Then Timmy rested in his swing while I took a long, glorious bath. And finally after about 45 minutes of just relaxing together, Timmy started to drift off. And now that the music is soothing and consistent, he’s pretty asleep in that swing. Thank you, Jesus! I’m clean and we’re both getting some much needed refreshment. And I also know that with the help of my hubby and my friends, there is food to eat, a clean kitchen and bathrooms, and a scale to weigh Timmy’s diapers and make sure he’s well hydrated. Ahhh!!!

Sometimes Daddy’s just what you need...

In thanking all of my friends yesterday for their help for our family, I am realizing that I took for granted one of the biggest helps I had yesterday: Timmy’s fabulous daddy! When he came home from work on Tuesday, his wife was just one big ball of stress, and he really stepped up to the plate. He helped to feed Timmy and get him ready for bed. Then he volunteered to stay home from work and do some of the odd jobs that needed to be done. So yesterday he returned calls to various doctor’s offices and friends. He went to the store and got the things that we so urgently needed, like baby food, milk, juice, and some higher flow bottle nipples. He also picked up a small digital scale so that Mama can weigh Timmy’s diapers. It might seem crazy, but I think that having a tangible way to determine for sure that my little one is well hydrated is going to take a huge load of stress off of my shoulders. And a relaxed Mama helps the rest of the family relax too!

Hangin' out with Lauri

Friends are wonderful things. Today there were several of them who just blessed our socks off. First Timster and I spent the afternoon at our friend Lauri Ficke’s house. Her nursing expertise has been invaluable. With her encouragement, I was able to de-stress a bit, which helped Timmy to sleep too. He got about a 2 hour nap on her bed this afternoon. Praise God!

Then when we got home, 2 of my good friends from church came by with dinner and helped to clean up the kitchen and the bathrooms. They killed lots of germs and got things looking and feeling MUCH nicer - another bit of stress relief.

Please continue to pray for good naps and good eating for Timmy, and for my milk supply to come back up to where it should be. I’ve been feeling like my supply is low, so I gave him some formula today and found that it gave him hives. So if he isn’t able to keep nursing I’m going to have to pump until we can find an alternative that he isn’t allergic to. But if I’m pumping, then I’m not holding and cuddling or playing with him on the floor - and that’s hard on both of us.

With hope, Lara

Tonight's prayer request

Please pray that my Timmy would be able to relax and get in his naps during the day. He usually is a very good napper at home, but for the past two days he has had a combination of some gas as well as a very active mind that seems to be processing all of the recent events, and he has not been able to nap for more than 20 minutes during the day - and then only when snuggled in the rocking chair (not even snuggled with Mama on a mattress on the floor). And when he can’t nap, he has trouble nursing. And then Mama gives him bottles to make up the difference, but she also worries. And Mama can’t even shower or make the grocery list or pick up the house or do the dishes that are piling up. And then Mama’s stress just makes Timmy more stressed, and the cycle continues. So please pray for peace and naps. But in the meantime, Daddy is going to stay home tomorrow to come to the rescue.

Yay, Daddy!

An update on the Timster

Many of you know that our little boy has been in the hospital lately, and we wanted to take the opportunity to update you on what is happening. Timmy has been diagnosed with a genetic disorder where his body can’t produce enough energy, so he is behind on his motor skills and needs lots of extra rest and vitamins. Sickness in particular takes a lot of energy from the body, so we need to prevent that as much as possible.

He’s still a healthy, growing boy; he will just need some extra care and patience over time. If you see him, please give him lots of love and smiles!