1 week with no major episodes!!!!

Today I am praising God that Alegria has not needed resuscitated in the last week!!! A week ago, we had begun to wonder if this wasn't going to be a frequent occurrence. She had stopped breathing 3 times in 10 days time (2 of which were only 24 hours apart). While we certainly do not know the future, it has been a refreshing week.

Her projectile vomiting has almost completely resolved though she does still spit up small quantities from time to time. We have not yet started working with bottle yet as the doctors all wanted us to give her some time to recuperate, but I anticipate starting that again soon. She definitely likes her paci again!

The PEG tube is healing well it seems. I think overall it has been a much better choice for both Alegria and her mommy. Both feeding and burping are much simpler. That certainly doesn't mean they are necessarily always easy though. We have had numerous incidents already of the syringe coming lose from the tubing, or the side port opening in the middle of the feeding, or forgeting to clamp the tube shut in the middle of the night and they all result in a big mess! We are learning not to cry over split milk though :) One thing that I think I forgot to mention was that when they did the surgery, the doctor found and removed a juvenile polyp growing near the exit from her stomach. He said this may have intermittently blocked the exit from the stomach causing bloating and discomfort. In my human logic, I did not initially see the wisdom in putting Alegria through this surgery, but God in His omnipotence knew and planned that this surgery would not only make feedings easier but also resolve a problem of which we didn't even know!

I am still learning how to keep these monitors working. It seems that I am frequently troubleshooting their connections, and I am doing well if one is working without constantly false alarming! We have found the oximeter to be the most helpful as it gives more detailed feedback, and it seems to alarm far in advance of the apnea monitor (thankfully the apnea monitor hasn't had a true alarm yet). Both Al and I appreciate this because it gives us an opportunity to watch her and make any necessary adjustments before we are actually in a crisis. Just repositioning her or stimilating her brings her oxygen saturation back up quickly.

We have been enjoying the absolutely beautiful weather God has given us. Alegria and I have both spent some time outdoors the last 2 days. It is so refreshing! Yesterday while we were outside, we discovered where our 2 female cats had hidden their new litters. The other children were very excited to find that they now have 8 kittens! It is always so much fun to watch them with the baby animals!

Jill

Happy Birthday to Ali's Mom

Here is the requested Happy Birthday to Ali's Mom. I really was planning on one, as my daughters wouldn't let me forget either, but just hadn't gotten around to it yet today :) All the children took turns taking pictures of Ali and I today, and here is the favorite...

Gadgets and Gizmos...

...that's what we have begun calling all of the equipment we now have at home for Alegria. We have an apnea monitor which alarms if she stops breathing more than 20 sec. We have a pulse/oximeter which alarms if her oxygen saturation drops below 90%. We also have a suction machine to help keep her airways clear. We have an ambu bag connected to an oxygen tank in case of emergencies in which she actually stops breathing again. And we have lots of wires, cords, and tubing :)

Thankfully so far we haven't had another episode since Saturday, but the doctors felt it would honestly be a matter of how frequent (not if) they would happen again. So Ali is continuously hooked up to the apnea monitor and she is on the oximeter as needed (especially at night). Her siblings have all been enjoying frequently reading the numbers on all the machines. "Mom, the green number (heart rate) says 142... 143... now it says 150!"

I am so thankful to be home and thankful for the tools God has provided us to better care for Alegria. We arrived home after 7pm on Monday, and I must admit it was a bit overwelming to be troubleshooting 2 new machines in the middle of the night the 1st night. I had to keep reminding myself that we would eventually get them figured out and that they would be helpful when we did :) Now the machines are under control, and while the oximeter does have a lot of false alarms, we are learning to adapt again.

Alegria's PEG tube feedings are going fairly well. We have not had as much problem with projectile vomiting since coming home this time. I have decided to try to eliminate all dairy from diet to see if that will help more though as I read one statistic which said over 50% of reflux is caused by intolerances to dairy. I figure it can't hurt to try it at least.

Thankful to be home again,
Jill

Heading Home Again :-D

Praise God Ali has not stopped breathing in 48 hours!!! Everything is in the works that we will hopefully head home this afternoon.

Please pray for an easy car ride for Ali and that we all would transition well in getting everything set up at home to be able to care for Alegria.

Thanks,
Jill

Praising God for more good news!!!

While Ali is still in the same room, she is now longer an PICU charge. In other words for all practical purposes she is not in need of ICU care anymore. She is off oxygen, IVs, and all the monitors except for the pulse oximeter. She is alert and active. We are all hoping we may be discharged tomorrow now, but there are still many things to accomplish first such as getting home oxygen set up in case of emergencies.

We also spoke with one of the neurologists today. Basically the EEG did not show any obvious seisures, but it difficult to diagnosis mild seisures in a baby. The CAT scan also is not very accurate in testing the developing brain, so while she may have brain abnormalities it is difficult to really diagnosis at this point (and it does not effect her care at all right now), so for now we will not focus on those possible issues.

The most important issues for her are her airway and breathing, so that is what we will focus our energies on for the time being.

Prasing God, encouraged, and hopeful,
Jill

Encouraging Morning

Praising God for another great night. Alegria was just taken off IVs and oxygen!!!! She is even more content and alert now. And her heartrate and respiration are all back up to her normal rates!!! Very encouraging and refreshing way to start the morning!!!

Wide Awake :)

Alegria is wide awake at the moment. We have cut back on the pain meds and also started feeding her again, both of which seem to be working well for her. It was so nice to see her eyes open!!!

She did have another episode this morning in which they had to bag her. It began and ended all very quickly (probably less than 5 minutes). While it was not what I would have wished, it was good to see exactly how to handle and assess things in a calm, effective way.

We really do not know how long we will be here at this point. If all goes well, it may be that we will be home by the middle of the week. If the episodes continue to be frequent, they will keep us here longer until we can determine the best course of action. No one honestly expects that the episodes will stop completely either way, but we will now have all the tools available at home to best help her and we will leave the rest in God's hands.

Please pray that God will continue to give us wisdom, direction, and strength. Please also pray that God would see fit to help Alegria breath better on her own.

Thank you all,
Jill

His mercies are new every morning

It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness. Lamentations 3:22-23

We have had a very restful night. Since Alegria is still being fed by IV only (i.e. she is VERY hungry) and also seemed possibly still uncomfortable from the surgery, we decided to keep her on frequent pain meds through the night. And she slept well with no real episodes, so we slept well. Very refreshing especially after a very busy and exhausting day with lots of testing and lots of information to process.

Yesterday we were informed by the pulmonologist that we should definitely wait to begin any of the reconstructive surgeries as by closing any of the open portions in her mouth could actually make breathing much more difficult for her. This actually in some ways a relief because Al and I had already agreed we wanted to wait as long as possible to start the surgeries in order to give her body more time to rest and grow stronger.

Last night we were trained on how to use the apnea monitor and suction machine at home. Today I think we may be retrained in CPR and how to use the ambu bag.

We also should speak with neurologist and get the results of the EEG and CAT scan. And we will also speak with surgeon to find out when we can try to begin feeding her again through the g-tube.

Mostly though it is just watching and waiting still. They expect to keep us here through the weekend.

Jill

I'll Agree With Ya

On a lighter note, most of the nurses, doctors, and specialists have had a difficult time pronouncing Alegria. Today we told our day nurse the trick my brother-in-law came up with to remember how to pronounce it correctly "I'll Agree With Ya", and she told everyone else. So now everyone knows how to pronounce Alegria. Thanks Uncle Travis ;)

My rock, my strength, and my hope

I cry out
For your hand of mercy to heal me
I am weak
I need your love to free me

O Lord, my rock
My strength in weakness
Come rescue me oh Lord

You are my hope
Your promise never fails me
And my desire
Is to follow you forever
For you are good
For you are good
For you are good to me

Pulmonologist (Lung Doctor)

We just met the Pulmonologist. Another very pleasant and down to earth doctor. Basically, after taking a detailed history of both incidents, he believes we are probably dealing with obstructive apnea, which means something is blocking the airway versus the brain forgetting to breath. He would like to run several more tests himself. Now also when we do go home Alegria will be going home with ALL the bells and whistles! We will have an apnea monitor, special care seat, special suction machine, and even an ambu bag to rescitate her if necessary.

We still will be meeting with a Neurologist (brain doctor) later after they run an EEG.

Also we repeated her ECHO and expect to hear back from her cardiologist soon.

Jill

Transferred from regular room to PICU.

Jill asked me to post an update that Allegria was transferred from her normal room in Fort Wayne to the Pediatric ICU after an incident she had this morning. The oxygen saturation dropped to 50% on the monitors and they initially thought it was just a false alarm because her color was fine. Within about a minute she changed to a dark purple like she had 2 times previously this week. Jill insisted that they start CPR, and they started bagging her and her color and oxygen quickly returned to normal. It could be a result of the antesthetics or it could be related to what happened before. So they have tranferrered her to the PICU to be monitored and ungo some testing. They are hoping and praying for some answers so that they can return home soon.

Kim Kincaid (Jill's sister)

More watching and waiting

Alegria has had a tough morning. She stopped breathing again, so we are back in PICU running many tests trying to determine what is causing her problems. She does look good now though and her oxygen saturation was back in the high 90s. Please continue to pray for Ali's health and wisdom and peace for the rest of us!

We also have WIFI in this new PICU room, so we will hopefully be able to keep everyone better updated. If any needs to reach us by phone, call 1-800-444-2001 press "2" then press "52402"

Thanks
Jill

Post Op

(This was written Thursday night, but never posted.)
Well Alegria looked well when we got to see her in recovery. Dr. Smith (the surgeon said) everything went very well. He did mention that he found and clipped a small nodule which was growing close to the exit of the stomach. He did not feel it was anything to be concerned about, but he did say that alone may have been causing gas and discomfort simply by intermittently blocking the exit and preventing the stomach from completely emptying. Once again God has directed our steps, if we had not gone ahead with the g-tube surgery, they would not have found and removed this nodule. He did also see some inflammation around the valve where the stomach and esophagus meet, so like we mentioned earlier it seems good we are getting the ng-tube out now.

Alegria is resting well at the moment. Although she is doing extremely well and overall better than last time she had anesthesia, she is definitely not without a few struggles. The first few hours were again marked by much time spent with bulb syringe as she was fighting quite a bit of mucus. Her temperature is running a bit high, so the last nurse did not want me to hold her much, concerned it would only make temperature go up higher. BUT then they gave her a dose of albuterol, and her heartrate shot up. So I finally picked her up to soothe her back to sleep and then her heartrate dropped 40 points!!

She has not yet been permitted to eat. (12 hours from the time she left surgery!) So she will get her 1st post-op meal around 2 am.

I am exhausted and having difficulty spelling and typing so I will update more later.

Thanks again for you continued prayers.

Jill

Out of Surgery

OUT OF SURGERY!!! It went well. Her oxygen sats stayed good. Heading to see her in recovery soon. She cannot eat for 12 hours now, so it may be a long night. I'll update more after we see her. Thanks for praying.

In Surgery Now

They took Alegria back to surgery at 1:07pm. We are just waiting and praying all goes well. The procedure should take around 45 minutes, so we should know something soon and will update when we get a chance.

Jill

So why the G-tube?

Last week I asked everyone to pray Alegria would take her bottle well so that we could avoid the G-tube. I was very apprehensive of adding another surgery and wanted so badly for her not to need it! At first I think I was even fearful of having to get a G-tube, but I did quickly come to the place where I could honestly say that I would trust God in this too. Not my will, but thine O Lord.

The next day we had an appointment with Alegria's primary care doctor Dr. Egli whom I really trust. We discussed the G-tube and my concerns. He basically said that although he did not see the surgery as mandatory, if it were his child he would definitely choose the surgically placed g-tube over the ng-tube down the throat. He also clearly described the procedure and how simple it generally is to both place and remove. The one final suggestion he had was to talk with other parents who had been through it.

So we did just that. We talked (or emailed) numerous familes, and also with doctors and nurses. They all said basically the same thing. The G-tube sounds like a much more invasive way to feed Alegria, but it is not really. In actuality it is only really a one-time more invasive procedure, and then it is much easier, safer, and better. Many parents said that had felt just like us and had tried to avoid it and afterwards wishing they had gone ahead with it sooner.

So what will it change? Alegria will not have the tube down her throat or the tape on her face constantly irritating her delicate tissues. I will not have the tube to place down her throat sometimes several times a day due to her pulling it out or throwing it up. There will be no risk of her tube getting misplaced and feeding her milk directly into her lungs. Just removing the tube may help with her vomiting, but it may not. It is possible that the g-tube may actually make the vomiting worse. While it is obviously not the reason we are going ahead with the surgery, a secondary benefit of having the g-tube is that it should also make it very simple to burp her (which also may help with the vomiting).

So tomorrow we face more change, and we can't really know how it will all affect Alegria, but God does. I know that He has directed our every step thus far and I trust he will continue to do so.

As I was considering how to end this post, the hymn "Whate'er my God ordains is right" came to mind. It begins thus:

Whate’er my God ordains is right:
His holy will abideth;
I will be still whate’er He doth;
And follow where He guideth;

We hope and pray this g-tube will make life a little easier and more comfortable for Alegria while she learns to take the bottle. We continue to trust God regardless and rejoice amidst these trials.

Jill

G-Tube Surgery

Surgery is scheduled to place the G-Tube for Thursday at 1 pm EST. Pray that Alegria will tolerate the anesthesia AND recovery better this time. Pray her O2 saturation will remain high and that her heart will remain strong. Pray also that this G-tube will help her to eat easier and to keep her milk down more successfully. Thanks so much!

Jill

Surgery Consult

We are heading to back Ft Wayne again this morning for a consultation with the pediatric surgeon regarding the G-tube placement. I will try to let everyone know the surgery plans as soon as we have them.

Jill

Letter to the Editor

Here is a copy of the Thank You I sent to our local newspaper the Bremen Enquirer...

Last Thursday, our 2 month old little girl Alegria Elizabeth stopped breathing. In the brief moments between stopping the van and actually getting Ali out of her car seat, she had vomited, choked, stopped breathing, and was unresponsive. We started CPR and called an ambulance. By the time the ambulance reached the ER she was crying again. She quickly stabilized enough to transfer her Ft. Wayne where she was observed overnight in the Pediatric ICU, and released the next day.

I cannot adequately express our gratitude to all those who helped our daughter. To Dr. Garl who performed CPR and his staff who called 911; to all those who responded to the 911 call including Ross, Mark, and Steve from Tri-County; to the emergency room staff at Bremen who stablized her for transport to Ft. Wayne; to all of you, please know that your work is appreciated more than my words can adequately convey. Your response time was critical and impressive; it seemed only moments from the time the 911 call was made until help began arriving. We thank and praise God for the way in which He answered our prayers for help through each of you!

Resurrection Sunday Photos

All of us

Alegria and Grandma Mary

Happy Belated Birthday to Ali's Daddy!

Happy Birthday Papi!

How to post a comment

Many of our friends and family have mentioned having difficulty posting a comment on the blog, so I thought it might be helpful to explain the simplest way I know how to do that.

At the bottom of any posting, the last line looks like:
Posted by poolja at 5:19 PM 0 comments

If you click the "comments" part, it will take you to a new page.

When you scroll down to the bottom of the new page, you will see the an area to type your message entitled "Post a Comment." Directly below that is a dropdown menu entitled "Select Profile." If you do not know your profile, it is easiest to just post as "Anonymous" (at the bottom of the list.) Please just make sure you include your name in your comment, so we know who you are :)

Hope that helps. I certainly do appreciate all of your emails and comments. They are certainly an encouragement to me.

Jill

Settling In Saturday

Alegria is still very exhausted from the whole ordeal and is sleeping even more than usual. She has also been breathing harder since being revived. The pediatric intensivist doctor at Ft. Wayne began treating her with Albuterol while she was in the PICU and ordered another week of breathing treatments at home.

Since she is so exhausted, we have not begun working with the bottle again yet. It looks like we will go ahead with the surgically placed G-tube. As it has been described to us by everyone we have talked with (doctors, nurses, and parents), it appears to be the besy option for Ali. It is a one-time more invasive procedure and then it is much simpler and easier, whereas the NG tube she has now needs much more constant watching and care. Some days I have had to replace the tube numerous times in just one day which can be very iritating to her litttle throat I am sure. We are also hopeful that by just removing the tube from her throat may reduce how much she spits up. They did run some diagnostic tests yesterday (an upper GI and a swallow study) to see if she had any reflux or abnormalities in her digestive tract. The tests came back normal which is good news.

I'll try to update some more later.

Jill

No Pneumonia, Home Again!!!

Alegria is doing great today. Praise God we have seen no signs of pneumonia, and so we are home again!!! I will try to update more regarding the direction we are heading regarding upcoming surgeries and G-tube placement once we get settled back in, but right now I am just enjoying holding my little girl while her daddy and I sit here relaxing on a very comfortable couch at home!!!! :)

Jill

P.S. Alegria screamed most of the way home from Ft. Wayne. I must say it never sounded so wonderful before. What a difference a day makes, and how much your perspective changes!!!

Aspiration

Today marks Alegria’s 2 month birthday, and we praise God for the time he has given her to us.
Let’s start with the good news first. Ali and her stats look good now, but it has been a long eventful day though.

For now at least let me just quickly hit the highlights of the day without going into all of the details… In the brief moments between stopping the van today and actually getting Ali out of her car seat, she vomited, choked, and stopped breathing. We started CPR and called an ambulance. By the time the ambulance reached the ER she was crying again. She quickly stabilized enough to transfer her Ft. Wayne. So we are back at Lutheran Hospital again watching and waiting. If she did actually aspirate and take fluid into her lungs, the concern is that it may turn into pneumonia, so the first 24 hours should tell us better what we are dealing with.

Please continue to pray for Alegria that she will grow healthy and strong. Please also thank God with us that today He saw fit to leave Ali here with us. Pray for Ali’s siblings and for us her parents, give us grace, peace, and wisdom.

I will update more when I get a chance.

Jill

Bottle Feeding Deadline

I just spoke with Darlene the coordinator for the cleft palate team. As I mentioned before, they would like Alegria off of the NG tube as soon as possible. I specifically asked how long I have before they begin pushing for us to get surgically placed G tube. She said they will give her 2 more weeks before they would like us to get some more tests run to determine why she is still not taking the bottle (an upper GI scope and swallow test specifically). Those results would then determine if we needed to get the G tube.

So we have 2 weeks of hard work before us. As I mentioned last night, I am trying to feed her every 2 hours right now in order to make the quantity less that she needs to take at any given feeding. The BIGGEST challenge right now is actually burping her. I am spending twice as much time trying to burp her as actually feeding her. (Any suggestions on how to burp a baby would be appreciated!) One might think that as I have fed 7 other babies, I should know fairly well how to burp a baby (even a difficult burper), but all of our other babies were breastfed and rarely needed burped, so I actually do not have much practice. I was thinking about this as I was feeding her today and I realized I do not really have any experience bottlefeeding. I did not realize that it is normal for a baby to stop sucking when they need burped, so I was mistaking some of Alegria's disinterest in the bottle as just her inability to suck when in actuality if I can just get her to burp she will often try again. Regardless she will only work hard at the bottle in 5 minute bursts 2-3 times per feeding, so we still have a ways to go to get to take it all from the bottle.

Last night, 2 feedings in a row she took 2/3 of her feeding which was very exciting! Today has been more up and down. She took anywhere from 15-35ccs per feeding (of her needed 60 ccs). Since this morning, she averaged slightly more than 1/3 of her feedings from the bottle. 37.6% for any of the Main family mathmaticians who might be reading this :)

Thanks again for your continued prayers and encouragement. Please continue to pray she will learn quickly to take the bottle and that I will also learn how to burp her more effectively.

Jill

So how are we really doing?

We have faced challenging times before, but to be completely honest I must say they seem to pale in comparison. Both Al and I have been pushed beyond what we can manage in our own strength. Al has been working extremely long hours. A 60 hour week right now is a very light workload for him (typical is closer to 80 hrs), so I am left to manage the home and children myself for the most part. Both of us are getting very little sleep and are very tired. Things are certainly far from easy, but all of that being said when we rely fully on God and His strength, we experience that peace which passeth all understanding. It is when we take our eyes off of Him that things really get tough. Please pray that we continue to rely on Him alone!

Last Thursday, I was extremely emotionally overwhelmed. I had begun to second guess most of the decisions I was making, wondering if I was doing the best thing for Alegria. I prayed that God would give me wisdom and make the path clear that I should follow.

Just before bed, I shared my thoughts and concerns with Al. The most major were #1 I wasn't sure that we should pursue the lip surgery before she was completely off the feeding tube as it would likely only set her back further, #2 the obturator was NOT working, but I wasn't sure if we should continue trying to make it work or just leave it alone for the time and #3 I just wasn't sure how to get more milk into her with bottle.

Friday God certainly began answering my prayers! The coordinator for the cleft palate team called to let me know the plastic surgeon was not comfortable doing the surgery while she was still on the feeding tube. We also talked about the obturator and she agreed I should focus on getting her to take the bottle instead of expending so much energy fighting to get her to take the obturator. The dentist also called today and completely agreed with the decision to stop focusing on the obturator. The other thing the coordinator mentioned was that if we cannot get her off the temporary NG feeding tube soon, we will need to consider the surgically placed G-tube. All of this was exactly what I needed to focus and be able clearly see what needs to be done along with the movitation to get it done; clearly answered prayer!

So now I knew what needed to be done, but I was still uncertain how to accomplish it. My husband suggested contacting other parents who had successfully fed a baby with a cleft, so I sent out several messages asking for help. Everyone seemed to use a different approach, but one common thing everyone said was that they needed to assist the baby to get enough milk (either by squeezing the bottle or the bottle nipple). In the past Alegria had just choked when I had tried this, but I finally realized I needed to set a rhythm for her to follow, so she knew when to suck/swallow and I knew when to squeeze. Sunday morning was very encouraging as we both worked well together. Since then though, Alegria has come down with the head cold the rest of us are fighting, and she has been very fussy and not very interested in working at the bottle.

Nonetheless, I am encouraged and thankful!

I have also decided to try feeding her every 2 hours instead of every 3, so that she will need to consume less milk but more frequently in hopes that this will help to be able to take her entire feeding via bottle. This will certainly be more challenging and tiring for me, but I realize at this point I need to do whatever necessary to get her off of the feeding tube and still growing well.

Also she is now over 9lbs!!! She has gained almost 3 lbs from her lowest weight. This is very encouraging!

We still have a long road ahead of us, so please continue to pray Alegria will learn to take the bottle quickly, but I am very encouraged!

Jill

In the world ye shall have tribulation: but be of good cheer; I have overcome the world. John 16:33

Alegria meets her grandparents

Al's mother and stepfather along with his niece came up from Florida last week to help out. We had a wonderful time with them, and they were very helpful entertaining the other children. We had not seen them in a quite a few years so it was especially nice!

Alegria with her grandparents, cousin, and siblings


Ali & Pito
taken by big sis Abigail (our new photographer)


Ali & Mita
also taken by Abigail

Prayer Request/Canceled Surgery

I just got off the phone with the coordinator for the cleft palate team we are working with. They have canceled the lip repair surgery until Ali is able to take her feeding completely by mouth. If this does not happen soon, they will recommend a surgically placed g-tube instead of the temporary feeding tube we have been using. So with their agreement I am going to stop focusing on the obturator and instead focus our energies on getting her to eat!

Please pray that she will show marked improvement with the bottle in the next few days so we can avoid the g-tube. Pray that God would enable her to take her entire feeding via the bottle and also to give me the wisdom to know how to best facilitate that.