Good update!

Hey everyone,

I was so happy to find out at Seth's weight check for his GI doc today that he has gained exactly 2 pounds in the past 28 days, which means he's averaged more than an ounce per day, which is excellent! Thank you God! Thanks to all you who have been praying and advising us! He has vomited a few times still today, but he's definitely happier and less sick and gassy on the goats milk. He is in the 50th percentile for height and the 75th percentile for weight among baby boys weighing less than 3.5 pounds at birth. They use a different growth chart since preemies don't tend to grow as fast as full-term babies. Will obviously breaks that mold, and all of our boys are in the normal range. We were told that Marcie is actually FAT and we need to feed her less! I couldn't believe it, but she's 89th percentile weight-for-height. They also told us to stop feeding baby food. Formula/milk only until 6 months adjusted age. That's different from what we were told when Isaac was a baby. His pediatrician really pushed me to start at four months, and I was SO bummed by how time-consuming it was! Multiply the time consumption by five and you'll believe me when I say that I am glad we've been given a reprieve with these babies for at least another 6 weeks. :)

There's been lots of cuteness round these here parts, but not a lot of good sleeping. They are jack-in-the-boxes when bedtime comes at night, and we don't have enough rooms to let them fuss it out without waking the other babies! Arg! It's very tiring, but we are blessed and love them despite their annoyingly wakeful antics. ;)

This is another FB photo of Gracie (on left) and Marcie in their matching "diva" outfits from Lynnette (who is crazy and has taken David for an overnight tonight; she wondered what she's going to do in lieu of painting his toenails?)

And yet another cute outfit from Lynnette (she's crazy in a good way) on Seth today - after he vomited on the first one while still at home there were two more identical ones waiting for him! We were waiting for his ROP exam which came back as an "excellent! No sign of ROP or any other eye issues, praise God!

Saturday March 23rd update

Hi everyone,

Sorry it's been a while. I haven't really known what to write re: Seth as he'd started doing a lot better on the Neocate, but was still vomiting enough and having enough gas to incline us to switch to goats milk, which we did about 36 hours ago. At first we thought it was nearly miraculous, the difference! Then he started vomiting again. However, he hasn't had the gas he's had with all the formulas, so that means he hasn't had the screams of pain, a HUGE blessing! And he's not vomiting more than he was with the formula, plus the other babies have had some vomits in the past few days and just seemed out of sorts, so I wonder if there isn't a bug bothering him too. He seems happier and just more comfortable on the goats milk. He also isn't having the huge residuals he was having on the formulas. (I.e., it was taking him a LONG time to digest his food to the point we had to turn off his feeds for an hour or more to let him digest.) Now he's digesting the goat's milk beautifully, thank God! His diapers are looking a lot better, too, much less runny and a lot less mucus. (Sorry if that's too much information!!) I took the plunge and returned the GI doc's call to let her know we switched him (against her advice). We are going to mix in enriched powdered goats milk too so he can get the folic acid that goats milk doesn't have. And of course he'll be on his vitamins. We also have to add carbohydrates (some type of non-allergenic sugar/syrup) to the goats milk to increase the calorie content as he's on a much higher calorie diet due to the increased metabolism of kids with broncopulmonary dysplasia, who have to work harder just to breathe.

Which reminds me, the other night I was watching him sleep peacefully and breath very gently. I counted his respirations at just 20/minute! I've NEVER seen him breathe so slowly and gently before, and he was satting 98% on blood oxygen!

So suffice it to say we're encouraged right now. He still has reflux related to prematurity as all the kids do, and because there is no anti-reflux (added rice starch) goats milk formula he is going to have more spit-ups and vomits than the others. Their formula turns semi-solid when it hits their stomach acid, so they have a distinct advantage over him in that way. Goats milk is thin and soft and curdy, so comes back up a lot more easily than Enfamil AR. :}

He's mouthing things, including his pacifier and food and our fingers and his, quite a bit now. He still manages to gag himself, but it's a huge step forward in overcoming his oral aversion! He doesn't seem to have any aversion to sticking stuff in his mouth. It's going down the back of his throat that gets him.

Thanks for your continued prayers! The other kids are fussy but fine. Here are some pictures:

Our beautiful Marcie so cute and chubby I just had to snap this picture! She'll be so embarrassed one day.

Grandpadad with Seth, Marcie, Grace, David and Will

They no longer fit perpendicular to the tub length! Good thing Marcie was at Lynee's house or we never would have fit her too! Or at least it would have been very tight. L-R: Will, Seth, David, Gracie. They all kicked/splashed like crazy!

Cute little Easter outfit with eggs on the bottoms of the feet. Only Marcie fits in it so far. Thanks, Lynette!

Love and gratitude,
Carrie

Up and down again

Seth's weight, that is. He gained over 6 ounces but has started losing again as the vomiting has increased again. It's like he honeymoons on any given formula for a few days (we had a few good days after my last post), then tanks. Goat's milk is next! I'll report soon. :) Thank you for praying!

Please also keep praying for Gina and family, for peace for them all and protection over them as a family as they grieve their little boy's death together.

David and Grace had their first ECI appointment at home. David promptly did three times in a row the test he "failed" in the office, and was scoring actual age (7 months) vs. adjusted age (4 months) on several areas, and in one area was doing stuff they only start to worry about if they don't see it by 11 months! So he was a bit perplexing for them as they tried to decide what to work on when they come out, since he wouldn't have qualified in the first place if he had simply performed in the office like he did at home! :) Grace does seem to lag behind the others, but it's so much fun to see her do a week or two later what David (usually) started, Will followed, then Marcie and Seth came behind. :) The newest thing is manipulating objects with their feet and grabbing their own toes. They are getting SO interactive, too! They love to laugh at and play with each other's limbs. :)

It is BUSY around here. They are getting more difficult in some ways as they sleep less and what more stimulation. Whew! I am GLAD Spring Break is over; I missed the volunteers and am super behind on some stuff! Today is a great catch-up day, including sleep. :)

Regarding the toys I asked for (used, garage sale, from people in this area), it's not that we can't go out and buy new ones as some sweet people have offered to do for us; it's just that I figure why not get more use out of washable used ones people don't need or want anymore? The kids outgrow them so soon, it's a shame to pay full price unless you have to, right?! ;) Maybe that's the missionary in me talking . . .

I can't post pictures as normal because our silly photo program isn't working, but I have some cute ones! The ones below I managed to get onto FB and then screen shot into this post. Getting creative in my attempt to show off the babies . . . ;)

Love,
Carrie

Tummy time is much easier with Baby Einstein! But it still doesn't last really long. The therapist recommended this. Who knew TV could be a good thing?!

Since Seth missed out on the tummy time photo due to sleeping, here he is with his bib only half off and looking really cute! :) 

I thought we were off the roller coaster!

Hi everyone,

They say the NICU is the roller coaster ride of your life (and they were right!) but this tummy trouble of Seth's has been pretty nuts too. He had a really good day yesterday, very little vomiting, lots of happy playing and vocalizing. I kept thinking and saying, "He's like a real baby!" It made me realize how much his tummy must bother him most days, he's so much more sober and less active than the other babies. But yesterday he was just like the other ones; such fun!

The GI doc switched him to Neocate. So far, not good. In fact, much worse than the Elecare (both are amino acid based formulas with no protein of any kind in them.) We are planning to try goat's milk next if this doesn't work in the next 3 days or so. The doctor said it can take that long for his tummy to adjust. So I hope our doctor doesn't read this (ha, ha!), but I have a friend whose friend made her own goat's milk formula, adding the elements goats milk doesn't have that a baby needs. Lots of other people have weighed in too with suggestions on what to add to enrich it, and everyone is saying the same stuff, so that's good! :) I really, really want to avoid the surgery since it's irreversible!

Regarding our appointment on Thursday: After ten days Seth hadn't gained an ounce (still 12 lb 12 oz), but his primary care provider wasn't too concerned because his brain/head grew nicely. She said he's definitely not malnourished; he's still got some good fat stores. However, he DOES need to start gaining again! So please keep praying.

Lest any of you fear he is wasting away, here's a picture from his helmet imaging yesterday:

You can see his "sobriety" as he focuses on the whirling lights. He was the winner of the four (over Grace, Will and David) for the baby who sat the most still, but in the office he was a total cutie, playing with and gnawing on the toys and yelling with happiness and talking constantly.

Which reminds me: If anyone in this area (Dallas) happens to have used baby toys or can find them for good price at a garage sale, I'd love to buy them off of you! We don't have enough of the "explore" and play type, and they are already getting beyond some of the younger baby things (although we're still short of teething rings). I am looking for big, medium and small toys, just so long as they are for babies and not 3+ year olds. Thanks! :)


When we got home yesterday I put Seth in the Johnny Jump-Up, then David and Will both woke up, so I took them over to visit with their brother. Big brother was willing to get in on the action at least long enough for Gavin to get a picture, but not without being goofy, of course. ;) Actually, he did smile very nicely for a couple of other pictures, but the little boys weren't quite so cooperative, so I'm choosing the best one of the babies. Those are harder to get!

Isaac is very patient with all the babies' many and constant needs pulling us in all directions, and he tries to help out by running and fetching and entertaining. He's such a great kid! We are so proud of him.

Will and David have discovered each other and were lying facing one another on the floor this morning at Deb's, laughing at each other. So cute! All the babies gnaw on each other whenever they can find a sibling's hand or foot or arm.

Love to you all, with gratitude,
Carrie

a few more funny pics

Will being 3D imaged for his head "DOC" band today

Grace in blue, Marcie in pink, both dresses of mine when I was a baby in Lomalinda, Colombia.

David wanted to get in on the fun in his onesie from Aunt Courtney. I, of course, like what it says ("Mommy's 1st Mate"). He's the only boy who can wear it anymore! The others are in 3-6 month clothing. Seth is losing weight but still weighs more than David.

Marcie is screeching for me to save her from being licked and chewed on by Will.
Only a good mother would laugh and get a picture first. ;) Her head was so wet afterwards!
That's Gracie on the right in a dress that was my sister's as a baby! I'm giving it back to her. :)

Still waiting and praying

Hi everyone,

There's definitely been some struggle with discouragement the past couple of days as Seth continues to empty his stomach several times a day and continues to lose weight rather than gain. The GI doc changed his Prevacid to Nexium, and she is considering another formula change (from Elecare to Neocate; some babies like it better). I asked her about goat's milk, but that's not complete enough nutrition; soy allergy usually goes hand-in-hand with milk protein allergy in her experience, and she has yet to see a baby with corn allergy at this age. This formula is essentially pre-digested, but Seth still has a hard time digesting it! In addition, we're still seeing blood from time to time. I know this is a chronic condition for many preemies and may necessitate surgery to help correct, but it's of course hard to see MY child suffer in the meantime, and the surgery is not without its own complications, including severe stomach bloating and pain. I wouldn't want it if I didn't know we could vent him manually using the syringe and his g-tube. We have a general health check-up tomorrow, during which they will note his weight loss and hear the laundry list of ongoing symptoms, so we'll see what the pediatrician says.

On a much happier note, he's doing really well with his various therapies. Also, Gracie rolled over on Monday! Seth is the last hold-out. It's hard to do tummy-time and practice rolling over when it makes him vomit. :(

Spring Break has made things a bit busier around here, especially as we've have lots of appointments to get to. Seth and Will are also being assessed for head re-shaping bands. Their right ears are markedly displaced and lopsided when seen from above, and they both have a noticeable flattening on the right side of the back of their heads.

Will and Marcie were assessed for Early Childhood Intervention (ECI) yesterday and happily did not qualify. It was so cute to watch them be put through their paces. :) They are adorable as they play with and explore toys and faces and surfaces with hands and mouths. I really hope the plastic mat in the room was disinfected because Will kept licking it. Last week David and Grace qualified for ECI just barely, David because he didn't track a toy from above his head to the floor when it was dropped (Will and Marcie, on the other hand, knew to look on the floor to find the toy.), Grace because she doesn't make consonant sounds like the other kids do.

That's it from here for now. Thanks so much for praying and caring!

Love,
Carrie

Clearly HANDSOME runs in the Peterson family ;) This is my brother, Kenneth, holding Will

Going . . . 

Going . . . 

Gone! (But not without swiveling around first in one final gasp of tired effort.)

Poor baby Seth; new baby antics

Hi everyone,

This week I was convicted by the verse in James 1 "You have not because you ask not," because I feel like I've been approaching this whole feeding intolerance of Seth's as just a problem for doctors and time to fix. Granted, I've asked for prayer, but I feel like my own prayers haven't been as straightforward and faithful as they should have been.

Lord, if you are willing, please heal Seth's tummy for your own glory! And also for his good, that he won't vomit several times a day [a very upsetting, gut-wrenching (literally) experience sometimes]. Please heal him so he doesn't wake up out of sound sleep screaming with severe gas pains.

The other day there was so much pressure build-up from gas that before I could even get the venting syringe inserted into his g-tube the gas came hissing out of  the clamped tube like an untied balloon having the air slowly let out. We have to use a 60 ml syringe because there is often a lot of residual undigested elemental formula (i.e., the kind that shouldn't require much digesting as it's already broken down!) that bubbles out with the gas. A couple of times it's almost filled the tube. So we have a baby who isn't growing adequately but we can't increase his feeding volume because he's not even digesting the food that's going in. Which of course then results in vomiting.

I know I am not alone in this; there is information and tips all over the Internet. My latest "what if?" is corn syrup solid intolerance. I can't find anything about gastroesophageal disease (GERD) causing such bad gas; that seems to be a symptom of reactions to ingredients in the formula/breast milk. I am going to call the GI specialist tomorrow to see what she thinks of trying a soy formula.

One interesting thing I found in my search for answers online was a strong association between feeding intolerances/GERD and breathing disorders. They tend to exacerbate each other. There are special sensors on the top part of the esophagus that react to the vomitus and trigger a reactive airway response. (I'm practically a doctor. Ha, ha. Hope I got that right!)

A lot of what I read says it just takes time and patience for babies to outgrow this. If that's how the Lord wants to work in this situation, He's clearly got our best in mind and He is trustworthy. But it's not going to hurt to ask Him to mercifully heal Seth sooner. We're told to boldly approach the Throne of Grace to find receive mercy and find grace in our time of need. (Hebrews 4:16) There are hundreds of "yes" answered prayers from the past year (not to mention my whole life and the whole of history), so I'm approaching the Throne again, grateful that I have Jesus at the right hand of the Father as my Intercessor who ever lives to plead for me. (Hebrews 7:25: Therefore he is able to save completely^[a] those who come to God through him, because he always lives to intercede for them.") However, I do realize that "no" and "wait" are also answers, and it doesn't mean He loves me or Seth any less. His love is perfect and infinite, unaltered by my faithfulness or faithlessness in prayer or anything else.

By the way, Marcie rolled over on Friday and has several times since. So that's three out of the five so far! Seth loves to climb/crawl up his Boppy or up my chest, digging his head in the whole way. It's so cute! Gracie likes to sit in her seat and watch everything and or lie on the playmat and hold on to toys above her; when put on her tummy she just lays down and cries. :)  David loves to hold his feet and stick his toes in his mouth. He also loves to grab and hold toys dangling above him using just his feet. Will and David and Seth are starting to feel our faces with their hands a lot. Will got the Johnny-Jump-Up going so wildly he banged his head on the wall. :} Oops.

So that's the scoop from here. Love and gratitude to you all!
Carrie

David and Marcie

One of my all-time favorite pictures. The speech therapist is working with Seth learning to eat sweet potatoes, and Marmi (Gavin's mom) is having a great time while Seth looks rather stunned by the new experience.

Seth appeared to need to hold on