Posted (jooosh) in All Posts on February-21-2008

I’m not sure how either of my girls do it. Ella was up pretty much all night and mom was right there with her. Ella has also slept very little today, and Tina has slept even less. As I write this, Tina is rocking the fussy Bun, calming her down, and….she just feel asleep and is now being placed in her travel crib.

Ella continued her rough spells throughout the day. She started off early this morning before her continuous feeds were totally done. We went to vent her, started to do so, and no food was coming up into the syringe. This was mysterious considering how upset she was.

Well the mystery was solved as soon as I felt around Ella’s side and realized her medicine port in her feeding tube opened up. So instead of draining into the syringe, the food was going all over her…yay. Considering it was 5:30am we weren’t about to give her a bath, so we did the baby wipe thing and got her cleaned up.

Tina then took her out into the living area while I slept a bit more. After a couple hours, we traded so Tina could catch some zzz’s before my workday started.

The trend of Ella fussing continued throughout the day. Most of the time she fussed, she was very inconsolable and would often require bringing her oxygen up to a liter, just to help her catch her breath. Singing does help to soothe her, and I’ve been doing this from the day Ella was born. The other thing that works is the singing monkey Aunt Shannon brought her a couple of weeks ago (thank you!!). In fact it’s crazy how well it does work.

Even with the consoling, these spells are so incredibly hard to watch. Some are so severe you think she’s going to pass out. I’m sure those of you with kids can relate to seeing you child in major discomfort. It’s just so hard to see over and over again too.

Tina does amazingly well through these episodes. I have times where I can handle them, and times where I have to hand her over to Tina. Thank God for my rock of a wife.

Ella also spiked a bit of a fever this morning (99.8 – 100.4F), but it has since dropped back down to normal. I’ve heard doctors say that teething does not cause fevers, but teething babies that put everything in their mouth is the cause of a fever. I’m not totally convinced that their theory is true, but either way, she had a fever.

I also believe her teething is the primary catalyst for her times of discomfort. Not that the feeding issue isn’t there. It is, and it’s something we’re still trying to deal with. But the teething has caused her even more congestion, which makes it harder to breathe, which is an area that Ella does not need more weakness in.

The secretions also drain into her throat, making her gag, which then spins her into a retching fit, which is making the feedings that much more difficult.

Even the most popular remedies for the teething (thank you for the suggestions) are causing more issues. She has such a sensitive gag reflex that almost anything you put in her mouth, besides her binky, will cause her to gag (even her binky does sometimes). We’re working on this, but it’s hard to make progress while she’s feeling the way she does.

We tried the Baby Orajel hoping that would east the pain, but instead, it made things worse be increasing the amount of saliva in her mouth. That’s no good for the Bun considering the scenario I described above. Plus, she does not dig the numb feeling in her mouth and down her throat as she swallows.

I did see the homeopathic teething pills some of you have mentioned, and I may take a look at them too. It’s a catch 22 though because if it increases her saliva, it could make things worse. Plus, Ella doesn’t take anything through her mouth yet, only through her g-tube, so I don’t know how she would handle having a pill in her mouth (even if it does dissolve quickly).

I’m also keeping my eye out for a teething device that vibrates. Some of you have mentioned that, but once again, not sure how Ella will do with it considering her oral aversion.

I think this situation has been overwhelming these last few days, and what has made it even more difficult is my struggle to trust God and hand it over to Him. My gosh, how many times have I learned about peace from surrender!

I can make excuses for why I haven’t been able to. Whether I’m too busy with work, or tired, or just taking care of Ella. The truth is, I need to draw close to God first, then take on these other things.

I really miss the interaction with friends and being social. I get energized from being around people, but with our state of affairs out here, it’s hard to do. I’ve even said that when things settle down, I’ll make time to get together with people.

Well, today I realized just how crazy that statement is. Things are not going to settle down, so I need to make time for what’s important. I need to take care of myself, so I can be a better husband to my wife, and father to my child.

So, I am going to have lunch with Matt tomorrow, a fellow NICU parent. We met him and his better half (you know it’s true Matt) on January 5th. Just talking to him on the phone today was such a blessing, and the spiritual support that we’ve received from this couple has been amazing.

And to top it off, we’ll be having lunch at Sonny’s BBQ so things just have to get better after eating there. =)

Thank you for all the unwavering prayer support. We continue to lift up our little girl’s health, and pray that her feedings will improve, and for the teething symptoms to subside. Our God is an awesome God and He is faithful through all these things.

Matthew 6:33
But seek first his kingdom and his righteousness, and all these things will be given to you as well.

Tracy Schultz on February 21st, 2008 at 11:14 pm #

Oh my goodness. She’s a total cutie patootie. Yes, it’s rips your heart out to see them struggling and know there’s next-to nothing you can do about it. That’s an unfortunate side effect of parenting: to have such intense love for someone and not be able to meet their every need. Even though we know God is Sovereign, it’s a struggle. The balance for priority is one we all struggle with, too. God has to come first. You’ll be able to meet the needs of your family if you regularly meet with God.
Best to you all! Sleep well, Ella!

Kristen on February 21st, 2008 at 11:41 pm #

*sigh* Praying you through. Sweet dreams to the Bun.

The Laz Fam on February 22nd, 2008 at 12:00 am #

As much as I hate you are having to battle things like teething, I also rejoice that you have the opportunity to suffer the “regular” baby stuff. She’s a gift, and we are so thankful to God for strengthening her, and for the faith we see in you. Thank you for inspiring so many. We will pray for you all, and for all the different aspects of your well-being, from sleep to something resembling a social life! May you continually find He is all you need.
Blessings ~ KTJB

Jodi on February 22nd, 2008 at 1:22 am #

If Ella is able, would you consider pain relievers such as Tylenol or ibuprofen? Different things work for different people, of course, but we found that traditional teething remedies such as teethers, Orajel etc didn’t help them at all. However, a dose of a pain reliever would provide enough comfort that they were able to sleep again. Our pediatrician recommended them as the best method since we knew they were effective, we could be assured of the proper dosage, and we could eliminate the guess work about when it would wear off (an issue we had with Orajel).

We ended up doing a lot of gum massaging, too. =)

I hope that tooth breaks through soon so Ella can start feeling better! The three of you are always in our prayers.

Barbara Mullins on February 22nd, 2008 at 5:18 am #

A couple of days ago you posted a scripture, Romans 5:3-5. Its a verse that talks of perserverence through the trials and the benefits we get from that. I once heard someone shed light on that verse: that as we go through trials and difficulties, it gives us an arsenal of the experience of God’s faithfulness, so that the next time we go through a trial, we can remember what the Lord has done for us and we can have hope. I can’t help thinking that God has given you a huge arsenal in the past year to remind you of His goodness and faithfulness. He is WITH YOU beloved in all your trials. Also, I’ve been thinking about this for a while, but is there any chance you can get involved in a local body of believers? I know you’re not at home and I know it would only be a short time, but it would give you some support and some social interaction. I also know it would be difficult with Ella’s limitations. The church is bigger than our local body and it sounds like y’all could use some of the encouragement and interaction that you could get from brothers and sisters in Christ. I pray for you and Ella every day and it is truly amazing to watch you walk down the road you’re on. God is and will continue to use this in your lives and in the lives of others, and my guess in a big way! Hang in there!

Matt, Abby, Austin & Caed on February 22nd, 2008 at 6:13 am #

You’re absolutely right about the “better half” thing…Abby’s ability to do what she does on the amount of rest she gets continues to amaze me. She has given me two wonderful sons and there is no one else that I would want to be the Mother of my children. We both have been blessed with a couple of incredible women. It’s hard when you have to watch your child suffer…there’s no way around it, it’s just hard. It makes your heart ache and you want to take their pain upon yourself so badly just so they won’t have to endure it. I can’t imagine how God suffered watching His Son in pain…and He actually chose to go through it. Just so we would have the chance to accept His gift of salvation. There are so many who turn that gift down or don’t even realize it’s there. God knew that would happen and He sacrificed Himself anyway so we could choose Him…and we STILL mess up (a lot!) and He loves and forgives us again and again. I can’t wrap my mind around that…thankfully I don’t have to. We do serve a BIG, BIG God whose ways are so much higher than ours and whose purpose is so much greater than ours. Knowing all that, it still takes a lot of work to turn things over to Him.
But the Lord’s plans stand firm forever; His intentions can never be shaken.
Psalm 33:11
Looking forward to lunch today brother.

Gloria & Red Jacobsen on February 22nd, 2008 at 7:52 am #

Hi! Tina & Josh,I know it is said God does’nt give us more than we can handle. but a break would be nice,sometimes with 7 kids I have to remind my self “I can t=do all things in Christ Jesus who strenghs me” You two are remarkable, your faith and love just shines through the computor,but best of all God’s love and yours is shining in Ella smiles. You two strenghen my faith in the sharing of your journey. I pray for every day for your contined strengh and the wonderful sense of humor you both have! Also most important Ella’s feeding problems and sleeping will be better soon,maybe to know infants are always a bit of a mystery. But things do get easier with time. Love & prayers. Gloria & Red P.S. Now that ours are all grown up, I am amazed how I got through the tough times,God carried us through. They are even today all grown up so much fun and facinating and each one so different from each other! Best of all they are not only our children but our best friends! and the grandchildren WOW! Praise God!

John & Estela on February 22nd, 2008 at 8:00 am #

This is tough… no doubt, but God doesn’t make mistakes. You are Buns parents for a reason, stay strong and before you know it you will be looking at this rough times and smiling… okay, maybe not smiling, but thanking God for the experience. Love and miss you guys!

Katy Nilsson on February 22nd, 2008 at 8:24 am #

Sonny’s BBQ, that brings back memories of living in Charleston – enjoy the hushpuppies!
Sorry to hear about Ella’s teething issues and the struggles you guys are going through to comfort her. Singing is great, especially yours Josh! Tina send me your address (again), I have the perfect CD to send you guys to sing along to and hopefully make Ella smile.

Joel Snyder on February 22nd, 2008 at 9:01 am #

Ella, I just got up and getting ready to go to your house in LoneTree. I am praying that the teething issue will get better. Also that the feeding starts to calm down for you. Tina and Josh hang on things will get better. I will check on you later. Love, Grandpa!!!!!!!!!!!!

Char and Jim Jordan on February 22nd, 2008 at 10:48 am #

Josh, I agree with you on the teething bit. Many babies struggle relentlessly with teething without the added challenges Ella faces. I think it is tough to believe doctors when what they say makes no sense. I think that is why we call medicine a “practice”. Get yourself together so Tina can get rest. Sleep deprivation is very difficult especially when it happens over and over. Help Tina and then all things will work together for your good. You and Tina are so great with this baby. Don’t let the sleep issue derail your family train. We love you. Wish we could be there to help with the care and love of your family. LOL Aunt Char

Avery Kronz on February 22nd, 2008 at 11:36 am #

Teething does stink. Even getting my 11-yearold molars hurts now even though I am older. Praying for you. sweet dreams cinderELLA, Avery Kronz

Kara on February 22nd, 2008 at 12:38 pm #

This too shall pass. But not soon enough! I’m glad you are going to take a break. Tina needs to also. When things were really bad and I had two little ones and Rob was never home, I would go out for a drink with my friend every Monday night. We would only be gone for an hour and a half, but it gave me the sanity I needed to keep going. Remember even God rested.

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