Recent Happenings:
Well, here is what is going on in Dallas. As most of you already know, the doctors have told us that we will be in the hospital until the Glenn procedure (2nd surgery). So, yesterday I went to Yukon and with the help of Mom, Jana, Stacey, Steve, Stephani, Patty, Amy, and Tony, we packed up our rent house. They were a huge help and we got A LOT accomplished. For those of you who offered to help…thank you as well. This was my first time out of Dallas since September 11th. It was hard being away from my little girl, but it was also good for me to get out of the hospital for a little while. I even had the chance to visit with my “helpers”, sweet neighbor Brenda, and dear friends Kelli and Stephanie. Oh, I cannot forget getting to see Skippy JohnJons! She was very excited to see me.
Emma has not had it easy these past few days. They were able to get her heart arrhythmias under control, which is great. They switched her back to a PO (by mouth) form yesterday and she seems to be tolerating well. They have also switched her to a different formula called portagen. (http://home.intekom.com/pharm/bm_squib/portagen.html) which is a step up from the tolerex. This formula actually has fat in it. They are trying to get her up to 30kcals, but Emma keeps having diarrhea when the amount is increased above 24kcals. Please be praying about this because she really needs optimal calories in order to gain the weight necessary to get stronger and bigger for estuation and the next surgery. Also, diarrhea increases loss of oral medications, which we found to be very detrimental in Emma’s health. (e.g. A-Tach). Also, they have had to go up on Emma’s vent settings since her extubation/a-tach episodes and we are unsure why this is. Before extubation, Emma was on a rate of 4 (how many breaths per minute) and oxygen at 21% (room air). Now Emma is on a rate of 20 and oxygen at 30%. They are planning on taking Emma to the OR tomorrow around noon to do what is called a BRONC (http://www.webmd.com/lung/bronchoscopy-16978 ) This procedure will give them an idea about whether or not Emma has any airway issues that are contributing to her having problems coming off of the vent. Please pray that this goes well and that we will have some answers as to how to help Emma come off the vent.
So, to make a long story a little shorter, Emma’s heart function is doing very well. Most definitely an answered prayer; however, there are problems that need to be fixed. Emma NEEDS to come off the vent. The longer she is on it, the more dependent she is on it. We feel like we get really close to getting her off of it and then we take several steps backwards. It is hard to watch her struggle with this and gag and cough on her tube. Also, her feeds need to increase and be tolerated. Emma is not too fond of touch and this breaks my heart. We are trying to get to hold her more and do more with her, but she is 8 weeks old and has only been held about 5 times. Imagine for a minute watching your baby cry, gag, struggle and touching her only irritates her more.
I love my baby so much and want her to get better SO bad. We need prayers. This going “backwards” business is NO FUN! It can be wearing on us. Also, Scott starts working on Monday, so Emma and I will need to learn to do this without him on a daily basis and neither one of us is looking forward to that.
God is Good! He fearfully and wonderfully made Emma! Although we cannot always understand his plan…..he has one!
Specific Prayer Requests:
Pray that Emma will tolerate higher calorie feeds and GAIN MORE WEIGHT!
Pray that Emma will be able to come off the vent SOONER THAN LATER!
Pray that Emma will be more adaptable to touch and holding!
Pray that Emma’s oxygen saturations will increase on lower vent settings.
Pray that Emma will start having more “good” days instead of “no progress” days.
Pray that Emma’s heart will be free of arrhythmias.
Pray for Scott and I to stay strong in our faith and strength.
Pray the BRONC will go well tomorrow and we will get some answers.
Pray for the doctors, nurses, and other staff caring for Emma.
Pray for our friends Taylor, Ella, Ella, Emma, Lyric, Lane, Kaytee, Blake, Haven, and many others who our on a daily health journey.
Sarah (Emma’s Mommy)
Sarah, I don't even know what to say... We are praying daily for your sweet family especially Emma. We love you all, hang in there The Lord is your strength!
ReplyDeletePlease know we continue to pray daily even when we're not sure what is going on. Will pray even harder now. Praying for healing for Emma and strength for mom and dad. I pray God will let His blessing fall and reveal Himself to you in many ways.
ReplyDeleteAngie-Ada
Sarah,
ReplyDeleteYou,Emma and Scott are in our daily prayers. I am praying that Emma's journey becomes more steps forward than steps back.
I pray that Emma continues to tolerate her feeds and that she starts putting on weight. Weston always gagged on this vent tube and always threw up. It is so exciting for me to hear that you guys are able to hold her, I only got to hold Weston once while he was on the vent, first real time was when he had just turned two months old.
I pray that she gets less irritable, I know how hard it is when you want to hold and comfort them and just the slightest touch or noise sets them off. I want you to know Weston is my cuddle bug and loves being held after not being held for two months.
I pray that the procedure will give them a clue on why she is struggling from coming off the vent, especially when she is stating so good and showing that she can do it.
You both are so strong. God is watching over you and holding Emma in His arms. I'll be praying for you both while Scott is away from his girls cause I know he would much rather be there than working. God continue to hold you all.
Love,
The Rogers Family
My heart broke for you when I read this. I cannot imagine how much this is wearing on you. I continue to pray for Emma to improve in every area she needs to and I pray for you especially and Scott. God is faithful. I know you have seen that in a very real way these past months. I pray that you will feel His presence with you at all times. I pray that His peace will fill you each time you face a set-back with Emma. She is a precious gift from God.
ReplyDeleteThank you for taking the time to post an update. You are all in my prayers daily.
Dearest Sarah and Scott, We are praying so hard and so much for your sweet baby and all of you. So thankful that her heart function is going better and we pray that her other problems will get better. We just can't imagine what you all are going through. Just remember everyone is still out here praying for you all.
ReplyDeleteWe continue to pray. We love you!!! Kendall and Darla
ReplyDeleteE - Even during the long nights, when so
ReplyDeleteM - Many problems come, and help seems far away,
M - May God hold you close in His tender embrace
A - And renew your hope for another day.
J - Just remember you are never alone,
A - As so many of us join you in heart;
N - Never abandoning the prayers on your behalf,
A - And loving you three from the very start,
E - Ever faithful in fulfilling our small part.
S - Secretly, we shed tears for you, knowing
T - The journey is uphill and the path so long;
E - Each of us would take her suffering away,
W - Would wish her well in a day, if we could;
A - And yet, here we are, reading these blogs, R - Raising all of our voices in healing songs,
T - Together-strangers, family, friends-we pray,
always, always for Emma Janae!
My baby Micah also has hlhs. He has not been operated on. The Drs in Dallas say he is just to weak for the surgery.. My heart goes out to you. I will add emma to my prayer list and pray for her like I pray for Taylor and Ella.. Hlhs is such a heart breaking diagnoses. These precious heart babies go through so much. GOD does have a perfect plan. He sees the bigger picture than what we can see with our own eyes..His plan is perfect and his ways and thoughts r higher than ours. We just have to trust him, that is how I get through every day with Micah. Trusting in JESUS.. My favorite scripture through Micahs journey has been . GOD works all things out for good to those who love him who r the called according to his purposes..Romans 8:28.. My son gets better then goes backwards too. It is so hard when that happens. A mommy feels so helpless. Just know that GOD is with us and he loves us and he cares and loves our babies so much. HIS perfect plan is what I remember every day..His plan not ours. I would not change anything about Micahs journey. Because I have seen so many blessings and GOD has been changing hearts and lives through my son. If only 1 person comes to know christ in a personal way, then every thing we go through is worth it, and GODS plan is carried out. HE picked us to be parents of these special babies and what a gift he has given to us.. Yes, the road is long and hard at times and watching our precious babies be sick is no fun and it is heart breaking. It breaks my heart every time I hear our precious babies going through hard things. But I know GOD is in control and he is carring our precious babies and he is carring us, and with the strenght and encouragement that GOD gives us, and the support from others that he sent our way is a blessing to us.. GOD has been blessing us in abundant ways. He fills up our cups, then he fills it up again to overflowing. I have never in my life seen GOD work in such a way that he is working now and showing me his love and power and provisions that he has for my life.. We serve a great and mighty GOD.. GOD is good and he does good.. He loves us and our precious babies, and every thing that happens is in his perfect plan, just remember every day. His plan is perfect and he sees the bigger picture. His ways and thoughts r higher than our ways and thoughts and he will bring us through to the brighter side. We were given this precious blessing and GOD loved us enough to pick us.. He specially hand picked us.. He trusted us with his great plan.. Now GOD loves us more than we know and can imagine.. HE is able to more exceedingly and abundantly more than we could ever ask or think.. Praying that GOD puts his arms of love around Emma and his parents and surround them lots of love and peace and give them strenght each and every day.. U r in our prayers.. Thanks for sharing your story.. Lori, Micahs mom. Hlhs baby and mommy...
ReplyDeleteWe all cherish these updates. We are out here praying for Emma. We also include all the babies going through their own journeys. We never heard of this heart condition until Emma. Now we know so much about it and what all can happen during the journey. It is one thing to hear of it, but another to be included (by way of blog) on some of the details. We know there is so much more you have gone through that we have not been told. Prayers continue to go up to our Father.
ReplyDeletePRAYER IS POWERFUL!!!!!!!!!!!!!
ReplyDelete