One Hundred and Ten Days. Even seems long spelled out.

The last couple days have been a bit more difficult for me. It so hard to see my baby girl when she’s not comfortable. Her nose is so raw from the CPAP cannulas that she fights to keep it on sometimes.

Ella’s nose will tend to get real snotty too, which reduces the effectiveness of the CPAP. Suctioning resolves the issue temporarily, but it also make the problem worse too. The more she’s suctioned, the more secretions occur…a vicious cycle.

I didn’t go see my girl on Friday night. I let Kerri and Tina spend time with her and I escaped into a movie. I missed seeing my girl, but I needed a break.

We all went to see Ella today though and she looked ok. Tina and I both took turns reading her a story, and the Bun was enjoying it until the CPAP started bugging her. Her pulse and breaths per minute have been elevated while her saturations have been in the mid-90s, an indication of her discomfort overall.

We ran into Dr. Kays today. He tries to give himself a break on the weekends unless he’s on call, but there are some other critical CDH babies that he’s committed to taking care of which is why he was in the NICU.

We talked to him about Ella’s current state and asked his opinion about where we stand. He indicated that he would have a better feel of our direction if her stats were solid, but because she’s not doing as good as we would like at the moment, he’s not sure.

Dr. Kays thinks that Ella’s current not-so-great state might be caused by her increase in fluids (not chest fluid, but too many fluids in her blood). So, he wrote an order to increase her lasix (a diuretic). The fact that that our girl is not throwing up so much is a good thing, but she could also be refluxing without throwing up.

To confirm this, he’s ordered that an upper GI be performed next Tuesday. Hopefully we’ll get a good picture that indicates the severity of Ella’s reflux.

Something that Dr. Kays recommended is that we consider pro-actively performing a surgical procedure to minimize Ella’s reflux. There is only a small chance that Ella is not going to have any reflux issues, almost all CDH babies do. Considering the severity of Ella’s CDH, the fact that she’s been there 110 days, and that her reflux may be directly impacting her lungs from getting better, are reasons he is recommending this procedure.

Another major concern is Ella possibly aspirating her stomach acid during a bout of reflux. This could have devastating affects on our girls lungs, and this operation would greatly minimize that risk.

We’ve not committed to anything yet, and we’ll look to the results of the upper GI to see where we stand. Ultimately, we just want to do what is best for Ella. We just need to pray and ask for wisdom before we make any decisions.

I started my day by reading the book of James. The Lord really spoke to my heart with the following verses:

James 1:2-4
2 Dear brothers and sisters,[a] when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Praise the Lord for his living Word. Thank you for your continued support in prayer.

God Bless.

Ella looks like she is feeling better than yesterday, but you wouldn’t know it by her stats.
 
Actually at 5pm, Dr. Kays decided to increase her oxygen assistance to 45% and left the CPAP pressure at 5. Even when she is asleep, her saturations are only mid-90s.
 
Yet just a few days ago, she was at 35% oxygen at a pressure of 5 and was consistently having saturations pegged at 100.
 
We’re not sure what to think. For some reason, her progress has slowed and we have taken a few steps back the past few days.
 
Aside from CPAP change, it was also a big day because they moved Ella out from her private room and into the main area. She is over near the window which will allow her to distinguish light from dark. And since Ella tends to be social, we are hoping that being out in a main traffic area encourages more nurses to stop and interact with her.
 
Yes, although we still have some wires to contend with, we finally get to dress Ella. They want us to stick to gowns, onesies and outfits that snap down the front. Now, she can show off her fashionista side!
 
Ella had a visitor tonight. Kerri, a friend from Colorado, came out to meet her and hang out with us over the weekend. Ella definitely appreciated the attention, as she gave lots of grins!
 
Please continue to pray that the Lord would strengthen her lungs and that whatever set backs she is having, that it is not a sign of anything major. We so desire to see her gain strength and graduate from CPAP! Go Ella, No CPAP, Go Ella, No CPAP!
 
Good night to all.

Ella had a bit of a rough day today. She was very fussy this morning, so much so that she required a dose of versed to calm her down. They think she might be having withdrawals from having the sedative meds discontinued the other day, but we’re not sure.

Her stats haven’t been as good either, plus her face looks a bit more puffy. We hope that it’s not a sign of anything major, and I don’t think it is. The next couple days will be telling though.

On a positive note, her chest x-ray looks a lot better then last Saturday, so her lungs have expanded more from being on CPAP.

At this point, we’re probably looking at another week or two on CPAP. Once again, as much as we don’t like it, we know it’s best for our girl.

We’ve had a lot of good days over the last few weeks, so we need to take the not so good ones in stride. We pray for Ella to improve over the coming days so that she can once again go to the regular nose cannulas.

On another note, as I write this next to Ella’s crib (11:45pm EST), I’m sitting about 25 feet away from Dr. Kays doing baby Par’s repair surgery. It is absolutely mind blowing to know what is happening so close to us. Dr. Kays is in his element, saving this baby boys life! What an awesome gift from God that he’s been given.

Please pray for baby Par’s stability through this procedure as well as his recovery in the coming days. We thank God that Liz and Rusty are here, giving their boy the best chance they can.

Heavenly Father, as I write this I know You are here. You are omnipresent, everywhere, all the time. You are sovereign and in complete control of Par’s surgery. Lord, guide Dr. Kays hands as well as the other doctors. We pray for a surgery with no complications and for a stable recovery.

Lord Jesus, thank you for being our hope. We ask for patience during this time, and we fully trust in You. In your name we pray. Amen.

If you would like to keep up with baby Par’s progress, you can visit Liz and Rusty’s blog here: http://babyrich07.blogspot.com/

(Nathan Greene – Chief of the Medical Staff)

Today was uneventful for Ella which is good.

Her CPAP remains at a pressure of 5 and at 35% oxygen.

We have not talked to Dr. Kays in several days so we are not sure what the plan is for how long Ella will remain on CPAP. Our intuition is that she needs a bit longer. When she is asleep, her saturations are 100 and stats look great. When she is awake and alert, she seems like she works a bit harder to breathe and her saturations are mid-90s. To us, this is a sign that she needs more time to gain strength.

She was awake a lot of the day and is still taking to her binky. She has spit up once today which is not bad and means that she is still tolerating the meds and formula going directly into her belly.

There is talk about possibly moving Ella out of her private room, out into the open area. The reason is two-fold: to get us more mentally prepared for moving to the NICU 2, which is very different and jam packed with rows of babies. Also, to give Ella more things to look at during the day and more interaction from people passing by (this is more appropriate for her developmentally at this stage). We would love to keep the private room, but understand that this could happen any day.

We heard that the renal department came by to assess her kidneys and did not find anything that they are concerned about right now – – praise God.

The occupational therapist should be visiting Ella sometime this week to do an assessment of where she is developmentally and what type of therapies Ella might need when she returns home. Also, the occupational therapist’s goal is to train us to take care of Ella, from therapies, feedings, medicines, developmental challenges, physical therapy, etc. We are looking forward to what she has to say and working with her over the next several weeks.

Par has been successful at remaining off of ECMO. If he can remain stable over the next couple of days, Dr. Kays might look to do his repair surgery. Please continue to keep him in your prayers.

Also, please pray for Ella to gain strength over the next several days. Her nose is a bit raw and irritated from the CPAP. So, please pray for her to continue to tolerate the CPAP as she has been doing.

Finally, please pray for Dr. Kays to have wisdom on when to take her off CPAP. We would prefer for Ella to stay on CPAP as long as needed to permanently move to the nose cannula rather than go back and forth, since it sets Ella back on her progress.

Thanks for joining us on our knees throughout this time.

Yes, it is hard to believe that it has been 15 weeks of the NICU 3. But, Ella is doing well today and continues to gain strength.

Another milestone: Nurse Andrea was able to discontinue the versed (sedative medicine). There is only one more drip, fetanyl, that is still in the process of weaning.

Ella’s CPAP is at a pressure of 5 and she is at 35% oxygen. Her saturations have maintained in the 95-100 range throughout the day. Also, she has only spit up once which is good.

Right now, she has fallen asleep in Daddy’s arms, peacefully sucking her binky.

We had lunch today with Jordan Brantley (below), which was one of Ella’s roommates. She was born on August 1, 2007 and went home on September 6th. She came to Gainesville today for her 2 month check-up with Dr. Kays and she looks great! It was so fun to see another CDH baby girl the same age as Ella doing so well.

Another praise: Par has remained off ECMO!

Lord, we just thank you for these babies. We thank you for the blessing and enrichment they bring to our lives.

We ask for your continued strength for the journey. We know that you have a plan and a purpose.

Ella Renae is doing well. She has been real smiley tonight for mom and I, although I couldn’t catch one in a picture. You think I would considering the 50-100 photos we take every night. =)

Nurse Jessica gave our girl a bath this evening and threw in a little baby massage to top it off. It’s pretty cute too because Ella gets pretty smiley when Jessica is around. I think our girl knows where her bread is buttered.

At this moment, Ella is in mom’s arms, looking into her eyes. Such a wonderful gift to have this time with her.

Her oxygen saturation looks good, vitals are within range, and her temperature was fine throughout the day. The one thing Ella has been doing a bit more of today is spitting up. It’s not at a level that is cause for major concern, but we’ll need to watch it.

Please pray that Ella’s reflux will be kept to a minimum and that her lungs will grow stronger in the coming days, allowing her to come off CPAP.

Also pray for baby Par. He did quite a little jig today on the ECMO line but once again, and in the nick of time, Dr. Kays decided against it.

Lord, we lift up these beautiful children to you, and we trust in your purpose and a plan. Thank you for blessing us with these precious babies. Please continue to strengthen Ella’s lungs and minimize her reflux. Give Par the strength and stability to avoid going on ECMO.

We will continue to praise you through all these circumstances, and fully surrender to your will for our lives. Impress upon our hearts the direction you would have us go, so that we may be obedient to you. We ask these things in the name of the Father, the Son, and the Holy Spirit. Amen.

Ella is doing better today. We can just feel it overall compared to yesterday. As much as she doesn’t like the CPAP headgear (we don’t either), it’s doing her good and providing the support she needs.

Our girl surprised us with another milestone today…she is sucking on a binky. This is something that we have tried many times in the past, but she has never taken to it. It usually has made her gag, but not today. Ella gets most of the credit in this success, but some if it has to go to Nurse Kelly who has such a magic touch =). We’re hoping that it’s a good sign of her taking to a bottle in the future.

We’re beginning to realize that Ella is not as fragile as she has been in the past. Many times early on, stimulation could send Ella into a bad downward spiral. Now that she is older and is overall in a better place, we are looking forward to being more “hands on” with her.

We both have spent a good amount of time holding her today. Something that we need to get better at is our confidence in handling our girl. We had been trained earlier to minimize our interaction with her, but now it is getting to a place where we need to interact more. It is hard to “undo” the training, but hope to gain more confidence with each passing day.

We will see how Ella progresses this week. Hopefully it won’t be too long until she has a chance to try breathing without CPAP.

Par, Ella’s roommate, is making good forward progress and has been able to avoid ECMO so far – – Praise God!

Your continued prayers for Ella and company are so appreciated.

Thanks to all of you for the love and support during this extended journey. We praise God for bringing us here and for blessing us through all these circumstances.

Well, Ella had to be placed back on CPAP early this morning.

Her saturations declined and she was having trouble breathing. The aveoli in her lungs were collapsing, making it hard for her to breathe.

This simply means that she is not ready yet and needs more time to gain strength.

Her CPAP is set back to a pressure of 6 and the oxygen support at 50%.

Right now, she is sleeping sound on her belly and her saturations are 100.

We praise God for our baby girl and know that His timing is perfect in all of the details.

On another note of praise, we have looked over at Par and can see that he is not on ECMO. Please keep praying for Ella and her “roommates” as well as Dr. Kays and staff.

Ok…so we didn’t think our girl could really get much cuter, but I think this picture says it all.

Ella is doing great tonight. She is finally off of any kind of mechanical ventilation. Just a nice flow of oxygen through the cannulas. Holding her is so much easier now without having the CPAP attached.

She’s still doing well with the full feeds going into her stomach, and the weening of her other meds continue.

Dr. Kays has his hands full these days with a total of 8 CDH babies in the level 3 NICU. This is the most CDH babies in this nursery at one time.

While we continue to pray for our sweet Ella’s success, we would also request prayer for Rusty, Liz, and baby Par (Phillip Andrew). I’m sitting a couple rooms over from him now, Rusty is sitting quietly next to him.

Par is stable at the moment, but he’s at a critical point of possibly going on ECMO. Please pray that Par will not require the use of ECMO and that he would remain stable and strong through the night.

Heavenly Father, we come before your throne of grace with hearts of reverence. Thank you Lord for the gift of Par, and the blessing he is. We thank you Jesus, that you are here, right now, right next to him. Lord we ask for strength and stability for this child, and for peace for Liz and Rusty. I pray that they continue to draw close to You during this time, and that this experience will be an incredible blessing and will bring glory to Your name.

We ask in the name of our Savior, Jesus Christ. Amen.

One hundred and one days! Ella has been tracking so well these days and looking cute as ever too!

We spoke to Dr. Kays this afternoon about our girl. He’s please with her progress and said that she would be stepping down to the regular oxygen cannulas tomorrow. Yay! No more CPAP, just a controlled flow of oxygen.

Some more good news…Ella has not spit up at all since we last posted! This is a very good sign in that she’s keeping her food down and it’s going through her body properly.

There’s still another (very large) related hurdle though, and that’s bottle feeding itself. Ella has never had food (i.e. breast milk, formula) given orally.

CDH babies typically have issues related to this and the fact that our girl has gone on so long without this experience only increases the likelihood that the problem will be severe.

We’re not quite at this step yet but we expect it to be a challenging once were there.

On another note of praise, Phillip Andrew was born today! This is the boy of Liz and Rusty, the couple from Birmingham AL, who we met here in Gainesville.

We have been praying for God’s timing in the situation because you see, Dr. Kays has been out of town for the last week! When we went out to dinner with our friends the other night, we didn’t want to alert them to this fact, causing more stress for Liz and Rusty, so we didn’t say a word.

Instead, we prayed and trusted that the Lord’s perfect timing would play out in their lives. Dr. Kays was back in town last night, and they delivered this afternoon. PRAISE GOD FOR HIS SOVEREIGNTY!!

Philip Andrew is stable and doing well, and so is the rest of the family.

Please join us in prayer for Phillip Andrew and his entire family. Pray that Rusty and Liz will continue to look to our Lord for peace, and that their boy will remain stable and grow strong.

Please also pray for our baby girl and her big step tomorrow coming off CPAP.

Praising our Lord for where we are, and for the road ahead.

God Bless