Tuesday, December 20, 2011
YIPPEE
We are in shock right now! Yesterday we waited around to see if she would have the surgery and still no decision had been made. The doctors decided to put in an ART line to compare her oxygen saturation levels in her artery compared to her other oxygen sats. THey wanted to get a better idea of what was happening in her. THis morning they tried to put the art line but had no luck (she's such a hard stick afterall). Well Dr O Brian came in and said they decided NOT to do the surgery. They thought right now with her sats doing so good, that if they tightened the bands that they would only drop her sats. They think as she grows she will continue to grow into her bands. SO the plan for now is we are getting moved out of the PICU on to the 4th floor. (It may be tomorrow because she has to receive a blood transfusion due to her hemoglobin a little low). BUt the great news that we are going to be on a different floor for Christmas (if not home by then). The 4th floor is much easier to have visitors and have food and cell phones. We are very excited that Haley is stable and doing so well. Thank you everyone for your prayers. GOD has been so faithful to us and holding us when we are in our moments of weakness. Merry CHristmas everyone......!!
Monday, December 12, 2011
THe MOnday after Thanksgiving Haley got a stomach bug. WE changed her to pedialite, and she tolerated that well. When we switched it back to even half formula/pedialite, she threw up. WE became worried that she aspirated so by Wednesday we took her to the doctor. BY Thursday she was breathing harder so we made the hard choice to come back to KC. That friday she got moved to the PICU where she is recovering. HEr lungs sound great now, she's off oxygen but she became so dry that now her kidneys are messed up. WE came in Sunday Dec 11, to find out her kidneys were shutting down. THe doctors took her off her captorpril, her lasix and stopped her similac sensitive because of the potassium. Monday Dec 12 we are doing much better. She was on milironone since they stopped her heart meds, but they are returning her meds back to normal except for her lasix. Her fluids are going to be closely monitored. We are awaiting word on her heart surgery. They told us friday that they want to retighten her pulmonary band. Then some months down the road proceed with the glenn procedure. We are trying to find time to finish our Christmas shopping because we feel we are going to be up here for Christmas. Im hoping to find a small tree to put in Haley's room so we can have our presents opened up in here with all the kids. Well better continue online shopping :)
Saturday, November 26, 2011
the rest of the story
Gonna try and recap what's happened in the last few months, the last posts I believe I left off where we were discharged. We spend 4 weeks at home and it was wonderful! We went to our first cardiologist appt 2 weeks in and she did great. Everything looked wonderful. THen 2 weeks later we went back to Kansas City and her oxygen sats were low. They decided to admit her to the hospital since she had not been on oxygen at home. The doctors determined she had a cold. We were admitted on Wednesday September 21. By the following Monday she was off her oxygen and they were going to discharge us but then her potassium level was high. With her being on Captopril that can cause your potassium to be high. SO they kept us to readjust it. By Wednesday her levels looked good but then she was needing more oxygen. We also noticed that she started weezing really bad after she would cry. We kept telling the doctors but they never heard it, just kept saying, "we'll watch her", well by Sunday Oct 9 they had to call in the rapid response team because she gotten so bad they had to rush her down to the PICU and was intubated with a breathing tube. She had a pnuemonia in her lungs and because of respiratory distress it was causing her heart to work harder. By that Tuesday we also discovered she had a bust ear drum :( They kept her intubated for at least a week, keeping her on lots of sedation medicine. By the following Tuesday or Wed, they took out the breathing tube and started working on getting her back off the milirinone, and back on her home heart meds. We finally got to go back to the 4th floor and preparing for home again. She got off oxygen and she was looking good, except she was having withdrawls from her sedation medicine. We would go home on those meds. Well that Sunday I was going to go home and as I as holding her Haley started having seizures. It was very scary! That happend on Sunday October 23. I had to go home because we had the other kids with us up there that weekend. Jeremy stayed and held her and she had another seizure. So now came tests. She had 2 EEGs, a CT scan and also a MRI. THe MRI came back and said she had a stroke. They think she had a blood clot and it traveled to her brain. So she was put on lovanox (blood thinner) and also a seizure medicine. Once that was under control we thought we would again get to go home. I was hoping by Halloween, but it didnt happen because she developed an infection in her pic line in her arm. I was beyond frustrated because it was one thing after another!!!! So they put her on antibiotics for that and determined it was not in the blood stream so by Nov 4 she was ready to go. YEAH, finally got to go home, only for 2 weeks. We had to go back for her heart cath.
November 17
We went up to Kansas City for her heart cath. She had it on a Thursday. We were expecting to go to the PICU that night on a breathing tube. They came out and said she did great through it and she was going to a regular floor. She developed a fever that day. The next day they decided to keep her because of the fever. THey took cultures which came back negative. She also started having HUGE crying fits and we couldnt console her. We figured out that it was withdawl from her sedation meds. (We had just finally weaned off her methadone and had to put her back on it earlier that monday because her withdrawl symptoms were so bad!) The doctors waited to discharge her to make sure they got her dosing right and that the methadone was actually helping. So by the Sunday we were discharged with a new weaning schedule. We had to stay up there in KC because we had appointments Tuesday and Wednesday. We got to come home the day before Thanksgiving! :)
the results:
Her cath showed that her left side had not grown as they were hoping. They also want to tighten her right band. THey ballooned her ASD valved and that was a success. Our doctor is going to discuss with the surgery team the next step, whether they do the tightening, the reconstruction of her arch and the glenn procedure all at once, or break it up. We will find that out at our next dr appt.
Right now we are enjoying our time at home. We had a great Thanksgiving at home. It's so nice being all together, I hate being separted from my kids!!!!!
November 17
We went up to Kansas City for her heart cath. She had it on a Thursday. We were expecting to go to the PICU that night on a breathing tube. They came out and said she did great through it and she was going to a regular floor. She developed a fever that day. The next day they decided to keep her because of the fever. THey took cultures which came back negative. She also started having HUGE crying fits and we couldnt console her. We figured out that it was withdawl from her sedation meds. (We had just finally weaned off her methadone and had to put her back on it earlier that monday because her withdrawl symptoms were so bad!) The doctors waited to discharge her to make sure they got her dosing right and that the methadone was actually helping. So by the Sunday we were discharged with a new weaning schedule. We had to stay up there in KC because we had appointments Tuesday and Wednesday. We got to come home the day before Thanksgiving! :)
the results:
Her cath showed that her left side had not grown as they were hoping. They also want to tighten her right band. THey ballooned her ASD valved and that was a success. Our doctor is going to discuss with the surgery team the next step, whether they do the tightening, the reconstruction of her arch and the glenn procedure all at once, or break it up. We will find that out at our next dr appt.
Right now we are enjoying our time at home. We had a great Thanksgiving at home. It's so nice being all together, I hate being separted from my kids!!!!!
Sunday, November 20, 2011
Continuing on with the story
These our the "journal notes" on Haley's page.
Haley Brooke entered this world June 15 around 12:35 am. She only weighed 6 lbs 3 oz and was 18.5 inches long. That really quite shocked us because of how big our other children were. My labor started with out pitocin (which was what I wanted). I saw my dr that Tuesday and he stripped my membranes, we walked the mall, and because i still didnt have regular contractions we went and picked up the kids and went home. Soon as I got home I started to put groceries away, and started supper. I started having contractions every 3 minutes apart. So we decided living 45 minutes away to head to the hospital. I was already dialated and didnt know how fast I would go. Well we got to the hospital around 8 pm, and from there my labor was getting very painful. I was able to get an epidural. I started having baby heartbeat decelerations so they put me on some oxygen. That helped alot! By midnight I had finally gotten to an 8, and my dr said he would check me in 20 minutes. when he came back he decided to stretch me on my next contraction, then I was ready to push. When she came out she had the cord wrapped around her neck,and had swalled meconium. But they were able to clean her up and out. she was so beautiful! With the longest eyelashes I had ever seen. After they handed her to me jeremy went to go make a few calls. the one doctor who had cleaned haley up said they had noticed some strange things, like a double layer of eyelashes. They gave us some information on lymphedema, her feet were swollen as well. We got moved to our room about 4 am. Didnt get much sleep that morning. around 9 am they came in to take her picture. We also had several doctors come in and ask question and look at haley, telling us she was born with a possible genetic disorder. THey wanted to do genentic testing. Well they also came in around 11 to do an echocardiogram to look at her heart. that's when we found out the devastating news. It was noon and the doctor said they were going to move her to the NICU and told us they were concerned about her heart. It was very small, and very serious. Jeremy and i were in tears. My mom was bringing the kids in later to see her because they hadnt met her, and Stephanie my SIL hadnt even got to hold her yet either. Not really sure how much time passed before they came in and told us they were flying her via helicopter to kansas city. I think Jeremy and I ran on adrealine from there on for awhile. Once the kids got there we were able to take them to see her in the NICU before they flew her. Jeremy was going to ride but something happpened and wasnt able to. They let me out to go home and pack. I met up with Darren and Stepheny Butcher (who decided to come to Kingman to work with us in the Church at the same moment haley was born). we had no clue the real reason God was sending them! I gave them the keys and headed back to Wichita to meet up with my brother and Sil. Mike & Steph drove us up here to KC because we had only had an hour of sleep. we got up to KC around midnight and went straight to be with Haley. We were allowed to stay in the RMH rooms in the hospital. We were in NICU pod 56. we were able to have a corner spot which was better a little more private. the next few days were a blur.
Haley was diagnosed with Turner's syndrome (which affects her growth) and a type of HLHS. Her left ventricle is too small and her aortic arch is deformed.
June 16
First of all I want to THANK EVERYONE for pouring out your prayers, love, and support to us in our time of need. It has been a tremedous encouragement to us! We are so humbled to know that so many care. I will try to post as many updates throughout the day as I can, but this will be hard as service is almost non existent throughout the hospital. However I will do my best to post a note every night on what we find out about symptoms, procedures, Haleys well being, etc. Please forgive me if thoughts seem random, bad english, misspelled words, and errors as we are very tired. As you may or may not know this took us by complete suprise. Haley has a "small left heart". Her right side looks really well and working like it should. To explain in not so much detail, the heart has 4 chambers divided in 2. 2 on the right side and 2 on the left. The blood flow is restricted on the left side. This is the way the heart works. The blood enters the right side and is then pumped to the lungs to be oxygenated from there it returns to heart on the left side. Then out from the left side it suppose to go to the rest of the body (head, arms, legs). Well with Haley left side of the heart being undeveloped, including chambers and valves, the blood takes the path of least resistance. Meaning that the majority of her blood is just being recirculated through lungs and not going to the rest of the body as it should. They have reduced the oxygen level that Haley is breathing in to try and force the blood to go through those restricted valves that lead to the rest of the body. That level has been slowly reducing throughout the day (this is a good thing:). Her platlettes were low in her blood this afternoon (count 76,000). The drs want it to be above 100,000. This is so the blood will clot, by this evening on her own Haleys count was up to 90,000. Praise the Lord! They had thought that they may have to give her a transfusion (still a possibility over the next few weeks) but they held off since it got higher. The drs are planning a test where they will insert a cathiter into Haley close to the heart and place a dye to get a much better look at the developement of arteries and valves (this could be a few days away). Tomorrow (June 17) we will find out the plan of action the drs are deciding to go with. Right now surgery is a definant. When and How many, we dont know yet. We have seen God's hands throughout this whole thing. He has been great to us! Debbie and I are staying at the Ronald Mcdonald House right next to Childrens Mercy. The address is Jeremy and Debbie Manthe 209, 2501 Cherry, Kansas City, MO 64108, as we are preparing to be here 5+ wks, if you want to write a note or send a card:) Thank you again from the bottom of hearts for your prayers for Haleys little "big" heart. I will tag a few people in these notes as I post them. please dont be offended if you're not one. However if you werent tagged and would like to be just let me know by expressing that on the comment section. I will post every night that I can to keep everyone informed so you can also check my FB page. God Bless from the Manthe's! We love you very much! A note from Debbie: She wants everyone to know that she is doing good physicaly. Going through normal post delivery healing. Debbie needs your prayers for emotional strength as you can understand she is spent mentally......We also want to say again reception is absolutely horrible for us in the hospital it is better to text us. and if you would like to talk say so in message and will call as soon as we can. Its easier to check txts than to go through voicemail. For those of you who tried calling today we'll call you tomorrow after the morning meeting when we find somethings out. I promise that we werent ignoring your calls just a lot going on today.
June 17
They held off the ballooning of the aortic valve today. Her platlettes in blood was low due to clotting. The Drs found 2 clots: 1 blocking an artery to her liver and the other one is from where they had the clavical line in. So with these there it made the procedure to insert the cath (balloon) a lot more riskier. They gave her blood thinners to cause the clots not to get bigger and to keep new ones from forming. The Drs are testing to see if Haley has any blood disorders that are causing these clots. They will be watching her very closely over the weekend to see if whether or not by Monday they can do the ballooning procedure on that aortic valve. She seems to be doing wonderful. Haley is responding to our voices (which melts our heart everytime). There are things (possibly more issues) that I will post when we find out for sure. The main thing is to get more blood to that left side to get to the rest of the body
June 20
They just took her back to start the cardiac cath. It could take several hours. We should hopefully know more of what is going on in her heart because they are taking a more detailed picture thanks to some dye they are injecting in her. She has been doing really good so far. We appreciate the prayers! We need them!
Haley came through the procedure ok. She's resting back in the NICU. They got the valve opened up so blood can flow better and her left pump can work & get stronger. Don't know when and what type of surgery lies ahead but it'll be next week.
June 2Haley was taken off the" hood" and able to breathe room air now. I can kiss her sweet face now :) She had a good night too!2
They took her off her ventilator and she is much happier. Now they are just giving her time to grow stronger before her surgery. So she'll be off of it for a few weeks. Still no surgery date set.
June 23
Haley was taken off the" hood" and able to breathe room air now. I can kiss her sweet face now :) She had a good night too!
She was put back in her tent to help her levels even out. Tomorrow we will talk to more Dr's and see if they give us a clue as to when surgery is
June 25
I first want to start off and say thank you! To all those that are praying, and showing us their love and support whether it be on facebook or thru the cards being sent, the texts, or phone calls. Jeremy and I really are so thankful for everything you guys are doing. We truly feel the hand of God upon us. Haley is such a blessing. She has a long road ahead but I know one day at a time we will make it. We wanted to tell everyone something that we have discovered. From the day she was born the doctors noticed some physical characteristics about her and decided to do some genetic testing. THey also did the echocardiogram which they discovered the heart defect. The genetic test came back positive for Turner Syndrome. Turner syndrome is also what caused her heart defect. We are not worried about turner syndrome, we are more concerned about fixing her heart. THe other symptoms with TS can be handled and it's nothing that is immediate anyways. Each case is different. She may have some issues and others she wont have. We are praying for her to have a normal healthy life with TS. Here is a link if you would like to read up on TS.
www.turnersyndrome.org, this website will be able to answer many questions you might have.
As of right now they are just giving Haley time to grow stronger. They are hoping her left side will grow stronger. IT is pumping better (which is what they were hoping for after the cardiac cath). We still have no date set on surgery but we dont want to rush her. Her doctors and nurses have been nothing but great. We have had nurses request to be with Haley because they've fallen in love with her too. :)
WE promise to keep everyone up to date as much as we possibly can. Thank you all for thinking of us!
June 26
First time we (Jeremy and Debbie) got to hold her (the first time in over 10 days).
June 27
Haley's day was a lot better today:) Mommy and Daddy got to hold her (really hold her and snuggle with Haley) today not just lift her up so they can change bedding. That did us both good. They took her off the prostin med she was on to keep Haley's PDA open(aortic arch). They want to see how it will react without that med, only time will tell. So far she is doing ok without it. The drs are closely watching her heart during this. This will also kind of determine when surgery might happen. They are continuing to hope that the left ventrical will grow and get stronger. SO ARE WE!!!! This is extremely important, as this would be her best option. We love you! and Thank you for your prayers!
June 29th
It is so true what I said at the very beginning when I wrote that first note. That things can change so quickly and that its an emotional roller coaster. Emotional roller coaster kind of puts things lightly. With that being said here is the latest. On Monday they took Haley of the Prostin med to see how her PDA and valve would react. Her artery and PDA stayed opened just like they hoped and she was doing really good, but her right ventricle was acting stressed and leaking some blood. So after the dr's talked again, they put her back on the prostin medicine to relieve that pressure. Well last night they told us they were looking at the one ventricle repair (basically making the right side do the work of both sides). We were very crushed at this news because eventually she would have to have a heart transplant many years down the road. Today the doctors approached us with another option. They told us of another procedure called the Hybrid Procedure. This procedure would put bands on the bilateral pulmonary artery and a stent in the PDA. This would restrict blood flow so her lungs would not receive too much blood compared to her body and it wouldnt cause stress to the right side. This procedure would give her time and her heart time to grow. We would have to do followup appointments every other week, keep in touch via phone and also have in home visits from a nurse. PRobably in 6 months they would re-evaulate and see how she is doing. If the left side has not grown like they want then the possiblity of the one ventricle repair would still be the route they want to take. This surgery is a major surgery (well 3 major surgeries split up over time.) This surgery is very risky and even more so because she has Turner Syndrome.
We are of course praying for God to grow Haley's left side ventricle! They are possibly talking about surgery on Friday (in 2 days). We are unsure if it will happen that fast. WE got a call from the nurse tonight and Haley might posibly have an infection on her arm from where she had some of her IV pokes. They are taking cultures and treating it with antibiotics just in case. So we wont find out until tomorrow about her surgery date and what surgery option that we will be going with. We will keep you updated as soon as we know. We thank you so much for your prayers. Haley is a feisty little girl and such a fighter!
Specific way to pray for Haley: Pray that this left ventrical will grow stronger and also bigger(capacity)
June 30
No surgery tomorrow, because Haley has an infection (cellulitus) in her left arm. Got to take care of this first. The plan is to go with the hybrid surgery (mentioned in last nights post). Wait and see game again
July 2
Good evening! I need to start of first by saying How awesome and gracious God has been to us through you. He has truly blown our minds by how He has provided. We've gotten so many messages of encouragement through FB and snail mail. Our faith in Jesus Christ is what we hold to strongly and you have been a part of keeping our faith strong by those messages of prayer, comfort, and encouragement. I know first hand that if you seek the kingdom of God first everything you need will be added to you....As I said before we look throughout those messages and prayers daily and it has helped get us through the toughest of times.
One of the toughest times came yesterday morning July 1 as Debbie and I got to Haley's bedside. She looked okay but not as good as the night before. The nurse quickly filled us in on what was going on. Haley had got upset during an ultrasound that morning and was crying for a long period of time, which is not good for a heart baby. She doesn't have much of a reserve when it comes to oxygen saturation. All that crying depleted it and Haley wasn't recovering very well. Throughout the morning she would get her sats up with the help of oxygen blowby (oxygen mask close to her face) but the nurse couldn't take it away or it would start to go down. Well Haley got upset again, not good at all! We couldn't get her calmed down. Soon our little area was filled with 15+ drs/nurses working on our little baby girl over the next few hours trying to stabilize her. We would see her oxygen sat go up and then go down and then back up. At one point Haley's sat was so low she was literally turning blue. Extremely scary for both of us! During and in between answering questions I was praying that God would honor that peace that He put in our hearts that Haley was going to make it through all this. At this time one of the drs came over and said I saw that in your paperwork that you're a pastor. I want you to know that I'm a christian, Can we pray. It was a simple prayer, but one that gave us reassurance that God was still in control. When we finished praying he told us that he had and will continue to pray for Haley and us. Wow! God is so GREAT!!! Not to long after we had prayed I saw improvements in her sats, however Haley was still very agitated so they gave her some morphine. It was during this that we really saw the fight that Haley has in her. Thirty minutes later she was still giving them a piece of her mind and was showing how strong she really is. They ended up having to intubate her again to help Haley with her breathing. So now she is on the ventilator and stable and doing well:) Today her infection was looking a hundred times better, hardly no redness to it. Haley has had a wonderful uneventful day today:) She will be on antibiotics for another a week. So IF Haley has surgery it wont be until the following week (and I stress IF). My God is able to do anything! We pray as Jesus did in the Garden of Gethsemane, Lord let this cup pass from us nevertheless not my will but yours be done. We will trust you God the same whether we're on the mountain peaks or the lowest of the valleys. We love you and praise God for ya'll.
ps. When you say a prayer for Haley also say a pray for her older Sister and brothers as this is also hard on them. Thank you and May the God that created all that we see bless you abundantly!
July 5
Quick update: Haley is scheduled for surgery on Thursday (the Hybrid surgery). Don't even know the exact time yet, just the day. They are going to let us hold her again even with her wires & tubes. (Thursday July 7) @ 8:30 am
July 7
Haley came through surgery great! She is doing good. Will get to see her soon
I thought I would write an update before I crash for the night.....
First I want to say Thank you for all the prayers! Eventhough we were nervous, anxious, and concerned there was a peace there that can only come from God through Christ Jesus by the Holy Spirit. That peace that passes all understanding. So keep those prayers coming:) We appreciate them more than you will ever know. All GLORY to the Maker of heaven and earth!!!!!
This morning we left early so we could love and snuggle with Haley before her Hybrid surgery was to take place. We got to love on her for a couple of hrs before the drs and nurses came to get her. Right before they took her the surgeons spoke with us again about the procedure and what was going to happen. It was then that things were a lot more clearer to me of why there were going with this procedure. Yes it gives Haley a chance to grow and get strong, Yes it helps not to overflood her lungs with fluid and it helps to get more blood into the left ventricle to also get to the body. However this procedure was making Haley's heart as it was in the womb. If you look at previous note (one describing the hybrid surgery) you see that they were placing a stint in the PDA to keep it open. This is and has replaced one of the medicines she was on. When we are born that PDA closes because the heart takes on a new role now that we are breathing oxygen. For Haley it was important that remain open. If that had closed we would not have the option of hybrid surgery and we would be looking at a single ventricle repair. This hybrid surgery was risky but not nearly as risky as the other option. So now Haley has the chance to get bigger and stronger before any other measures are taken. With that said we still are asking and praying for a miracle. This wasn't a one time fix it deal for everything. The left side still needs to grow bigger and stronger to be of adequate size to handle the blood flow she needs. They are still talking about reconstruction of the arch (at a later date) and there is another valve that needs to close that is being watched (not a serious issue right now). So we're not out of the woods yet. The surgery today was a victory but a small one. (We'll take it!) If that left side doesn't grow they will have to do the single ventricle repair (3 major surgeries broken up over time). Don't know yet of how much time they are going to give Haley. We will no more as Haley recovers. THank you for your prayers. That's it for tonight, I'll post more tomorrow.
p.s.
I hope it's comprehendible. I have had a long exhausting day so i know you'll forgive me:)
Peace and love to you all!!!!! The kind that can't be explained (that passes all understanding that can only come from God through Jesus Christ by the Holy Spirit)
July 10
This is going to be as short as I can make it tonight (maybe) because I'm ready for bed. I almost didn't write an update but couldn't help it because God is answering your prayers and you needed to know what's going on. Just a few days from surgery and Haley is doing great! So great that they gave her some milk through a feeding tube to coat her stomach to get her ready to start eating. Haley hasn't had anything foodwise in her stomach since she was just a few hours old. They are also going to try and take her off the ventilator tomorrow morning. Haley is recovering so well from surgery! We are extremely excited that tube isn't going to be there anymore and we'll get to hear her cry. Her lymphedema (swelling and puffyness) is almost gone. She is starting to look like a baby and not the Michelin Man. Haley's legs and feet are down to the size they need to be. It is so wonderful to see that swelling going away. These are all great steps in the right direction to be coming home. YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Good Night! We love ya and thank you for your prayers. Praise God Almighty
July 12
She got her breathing tube out! We walked in this morning and she was sucking on her paci. She was so bright eyed!!!!!!! It was so good to see her like that. Turned off all her medicines
July 13
We need your prayers! The drs are putting Haley back on the ventilator, she was working to hard to breath. Her blood gas came back that she was acidotic, meaning not good blood flow to her body. Right now we have many questions and not very many answers. They are putting her back on some of her meds. Heavily leaning on the Lord. We gained baby steps everyday and now in a few hrs we're taking giant leaps backward
Well good news its not her heart, it could mean an infection or too many changes too fast???? We wont know for a few more days, which means we're here for awhile longer. I just have to remember it better it happened here than at holme. Thank you for the continued prayer. Jeremy and I appreciate all your support for Haley. My God is a big God!!!!!!
July 15
Haley is doing pretty good. She is stable. The drs are taking things a lot slower this time around. So far the cultures they have taken have come back negative. We still have afew days to completely rule out that an infection was the cause of her event the other day. Haley had an ultrasound to check her clots and PRAISE THE LORD those are all gone! Again we're making some progress and Haley absolutely looks wonderful today, pink and fleshy not grey and marbled looking.
July 19th
Just wanted to write a little something before going to bed. I know it's been a while since you've gotten a more in depth update. Sorry for that. We still appreciate your prayers and words of encouragement. Yesterday Haley was taken off the ventilator. She has been doing great today without it. And that's all they did this time. The drs are taking it one step at a time this go around. They are starting to back off one medicine (milirone) and increase another medicine (captipril) which she will be going home on when that time comes. This is a medicine that helps with the squeeze of the heart. Pray with us that her oxygen saturation will remain up and that her lungs don't get to much fluid in them so she will be able to stay off that ventilator. Haley's staples were removed today. Didn't get a final count but there were many (atleast 15 -20 which is a lot on a little chest). She is stable and still showing that she is a fighter. THANK YOU ALL!!!! WE LOVE YOU! GOD BLESS!
July 22
What a week!!! Haley had her ventilator taken out Monday. Tuesday and Wednesday were little changes on her meds. Yesterday(Thursday) they started her on very small feeds to wake up the gut and see how she does with feeding. All week we've had a few rough patches throughout the day except yesterday, Thursday Haley had a wonderful day. For us it was another week of ups and downs, but the ups far outweigh the downs:) Thank you for your continual prayers on Haley's behalf and ours too. God is faithful to hear and answer your prayers. I feel I need to say something before I go on. God through Jesus can and will take care of you the same way He has taken care of us. The Bible says to seek His kingdom and His righteousness and all the other things will be given to you. Matthew 6:33. We are a testament to this! Look at what is going on and how God is showing himself real to us! If you are one that needs to see to believe then open your eyes and see. Debbie and I are nothing spectacular to deserve more than anyone else to deserve more than you. Walk with Jesus and lean on His ways not on what you think are His ways. We love you and Thank you so much for your prayers because God is answering them. We still don't know what road that we'll be taken on with Haley, but one thing God has promised is that He will be there with us to the very end. He proved that to us day in and day out. Our van needed to be looked at, it has been running hot. The airconditioning wasn't working very well. There was problems with the brakes. We felt that it was time to get some things fixed before making any trips back home. So we drove to a place that a friend recommended and as soon as I saw it I was like no that's not the place to do the work we needed. It looked a little rundown and it was a small mechanics shop. That's not the reason I didn't take it there, they looked like they were really busy and wouldn't be able to get finished plus it just didn't feel right. We then pulled over to a gas station and Debbie looked up Chevy dealers on her phone. McCarthy Cheverolet came up and it was somewhat close to where we were. We took the van there and what wonderful people. We knew the van would have to be left there overnight, over a few nights. There was an Enterprise just down the road, eventhough we didn't have the extra money to rent a car that was our plan. Ken from McCarthy asked what we were doing far as transportation and we told him. He said no that we have a loaner car for you and it wont cost you anything but a little gas. So we are driving a 2011 Chevy Cruise, a very nice little car I might add. I was impressed when we left just in this fact alone they went above and beyond for us. We had small talk, like where you from and what brings you up here. We told Ken what was going and why we were where up this way. A little more small talk and then Debbie and I were saying goodbye and talk to you tomorrow. (This happened on Wednesday) Thursday rolls around and I called Ken back. He told me all that was wrong, this was plugged that was plugged here a plug there a plug everywhere a plug, plug.;) The van needed a new radiator and other things and he said they were going to change the oil. I told him we just had the oil changed not to long ago. Ken said no we are going to get you going fresh since it had been running hot. Then I asked the next question, the big and dreaded question, How much are we looking at? Ken didn't know that Debbie and I have a limited budget. He told me that he had talked with the owners and been telling people our story. They decided NOT TO charge us!!! I still get teary eyed thinking about it. Ken told me how our story touched him (the little we told him) and he could tell that we were strong by looking into our eyes. If there is strength in our eyes it comes from Father above and not of ourselves. ALL PRAISE AND GLORY TO GOD ABOVE!!!! Be encouraged today as we have been! Remember Matthew 6:33! We love you! Thank you all!
July 24
Well since my status never got copied to Haley's page I will try and go back a little and update yall. Haley has had good moments and bad moments. She had her two IV's taken out, the one in her leg and the one in her collar bone area. They turned off her milrinone, but because her cardiac output was not where they wanted it, they turned it back on and so they had to put another IV in her arm. So now both arms have IV's in them. Today her blood work came a little more acidotic then they liked so they decided to put the oxygen mask on her to help her take deeper breaths. She is actually breathing room air, it just helps fill her lungs a little more. She just needs extra time to get her lungs strengthened. Dont really know how long she will have to have that on, and what lies ahead. All the rest of her numbers look pretty good, she had some stress on the heart, so they dont want to add any more so that's why they did the oxygen mask. Not sure how soon she will actually get fed, they are trying to get everything else settled before they add extra work of the stomach to the heart. I hope this makes sense, my brain is very tired.
July 29
Sorry havent updated on Haley as much, the other 3 kiddos have been here for the week. Haley is doin ok, she is getting fed thru her feeding tube into her intestine, and so far they are just making sure her liver levels dont go up. they think it is jaundice b/c the ultrasound didnt show any clots. She was in clothes today, and got to try out a swing! Plus we can hold her anytime we want now, her wires are to a bare minimum :) We still dont know of a time frame yet of when we get to go home, we just have to take it one step at a time with her because she's ornery ;) and likes to take things her way.
August 15
We're going to be speaking to a surgery consultant this morning about a possible install of a Gtube for feeding. Haley just isn't taking near enough by bottle. The goal now is 75mls every 3 hours. She is only taking 5-10 of that by bottle. What she doesn't take by bottle gets pumped in through her nasal feeding tube. We are still going to keep working on the bottle even after this procedure. The Gtube is just a temporary thing that will be done away with when she's a little older. WE APPRECIATE ALL OF YOU AND THANK YOU FOR YOUR CONTINUED PRAYERS!!!!
August 19
Haley had surgery to place the gtube and is doing great.
August 21
We got moved to the regular floor.
August 22
They are already discussing dismissing us. We have to do it all on our own for 24 hours. Give her medicine and feeds for 24 hours straight as if we were at home.
August 24
We got DISCHARGED!!! Headed home to Kingman :)
We also have so many people to thank, for putting benefits together for us and raising money for us. Calvin & Cari, Darren & Stepheny Butcher, Jennifer Graber, Rise & Fire, Melinda Abbott, Dr. Grillot, and Tammy Miller allowing Lexi Miller and Rylee Reid-Turpin for the lemonade stand. also to the Kingman Chamber, and Phil Caton and the rest of the bands helping out that day. We plan on having a thank you party once we get home again and settled. Thank you. Huge thank you to my mom Jeanette Madersky for watching our kids and my brother and SIL Mike and Steph. If you have any more questions please let us know.
We also need to recognize my other kids Alasandra-7, Joseph-6, Noah-2, they went through a lot this summer too!
We are not finished with our journey yet, but just starting. Haley has a long road ahead of her.
Debbie & Jeremy Manthe
Haley Brooke entered this world June 15 around 12:35 am. She only weighed 6 lbs 3 oz and was 18.5 inches long. That really quite shocked us because of how big our other children were. My labor started with out pitocin (which was what I wanted). I saw my dr that Tuesday and he stripped my membranes, we walked the mall, and because i still didnt have regular contractions we went and picked up the kids and went home. Soon as I got home I started to put groceries away, and started supper. I started having contractions every 3 minutes apart. So we decided living 45 minutes away to head to the hospital. I was already dialated and didnt know how fast I would go. Well we got to the hospital around 8 pm, and from there my labor was getting very painful. I was able to get an epidural. I started having baby heartbeat decelerations so they put me on some oxygen. That helped alot! By midnight I had finally gotten to an 8, and my dr said he would check me in 20 minutes. when he came back he decided to stretch me on my next contraction, then I was ready to push. When she came out she had the cord wrapped around her neck,and had swalled meconium. But they were able to clean her up and out. she was so beautiful! With the longest eyelashes I had ever seen. After they handed her to me jeremy went to go make a few calls. the one doctor who had cleaned haley up said they had noticed some strange things, like a double layer of eyelashes. They gave us some information on lymphedema, her feet were swollen as well. We got moved to our room about 4 am. Didnt get much sleep that morning. around 9 am they came in to take her picture. We also had several doctors come in and ask question and look at haley, telling us she was born with a possible genetic disorder. THey wanted to do genentic testing. Well they also came in around 11 to do an echocardiogram to look at her heart. that's when we found out the devastating news. It was noon and the doctor said they were going to move her to the NICU and told us they were concerned about her heart. It was very small, and very serious. Jeremy and i were in tears. My mom was bringing the kids in later to see her because they hadnt met her, and Stephanie my SIL hadnt even got to hold her yet either. Not really sure how much time passed before they came in and told us they were flying her via helicopter to kansas city. I think Jeremy and I ran on adrealine from there on for awhile. Once the kids got there we were able to take them to see her in the NICU before they flew her. Jeremy was going to ride but something happpened and wasnt able to. They let me out to go home and pack. I met up with Darren and Stepheny Butcher (who decided to come to Kingman to work with us in the Church at the same moment haley was born). we had no clue the real reason God was sending them! I gave them the keys and headed back to Wichita to meet up with my brother and Sil. Mike & Steph drove us up here to KC because we had only had an hour of sleep. we got up to KC around midnight and went straight to be with Haley. We were allowed to stay in the RMH rooms in the hospital. We were in NICU pod 56. we were able to have a corner spot which was better a little more private. the next few days were a blur.
Haley was diagnosed with Turner's syndrome (which affects her growth) and a type of HLHS. Her left ventricle is too small and her aortic arch is deformed.
June 16
First of all I want to THANK EVERYONE for pouring out your prayers, love, and support to us in our time of need. It has been a tremedous encouragement to us! We are so humbled to know that so many care. I will try to post as many updates throughout the day as I can, but this will be hard as service is almost non existent throughout the hospital. However I will do my best to post a note every night on what we find out about symptoms, procedures, Haleys well being, etc. Please forgive me if thoughts seem random, bad english, misspelled words, and errors as we are very tired. As you may or may not know this took us by complete suprise. Haley has a "small left heart". Her right side looks really well and working like it should. To explain in not so much detail, the heart has 4 chambers divided in 2. 2 on the right side and 2 on the left. The blood flow is restricted on the left side. This is the way the heart works. The blood enters the right side and is then pumped to the lungs to be oxygenated from there it returns to heart on the left side. Then out from the left side it suppose to go to the rest of the body (head, arms, legs). Well with Haley left side of the heart being undeveloped, including chambers and valves, the blood takes the path of least resistance. Meaning that the majority of her blood is just being recirculated through lungs and not going to the rest of the body as it should. They have reduced the oxygen level that Haley is breathing in to try and force the blood to go through those restricted valves that lead to the rest of the body. That level has been slowly reducing throughout the day (this is a good thing:). Her platlettes were low in her blood this afternoon (count 76,000). The drs want it to be above 100,000. This is so the blood will clot, by this evening on her own Haleys count was up to 90,000. Praise the Lord! They had thought that they may have to give her a transfusion (still a possibility over the next few weeks) but they held off since it got higher. The drs are planning a test where they will insert a cathiter into Haley close to the heart and place a dye to get a much better look at the developement of arteries and valves (this could be a few days away). Tomorrow (June 17) we will find out the plan of action the drs are deciding to go with. Right now surgery is a definant. When and How many, we dont know yet. We have seen God's hands throughout this whole thing. He has been great to us! Debbie and I are staying at the Ronald Mcdonald House right next to Childrens Mercy. The address is Jeremy and Debbie Manthe 209, 2501 Cherry, Kansas City, MO 64108, as we are preparing to be here 5+ wks, if you want to write a note or send a card:) Thank you again from the bottom of hearts for your prayers for Haleys little "big" heart. I will tag a few people in these notes as I post them. please dont be offended if you're not one. However if you werent tagged and would like to be just let me know by expressing that on the comment section. I will post every night that I can to keep everyone informed so you can also check my FB page. God Bless from the Manthe's! We love you very much! A note from Debbie: She wants everyone to know that she is doing good physicaly. Going through normal post delivery healing. Debbie needs your prayers for emotional strength as you can understand she is spent mentally......We also want to say again reception is absolutely horrible for us in the hospital it is better to text us. and if you would like to talk say so in message and will call as soon as we can. Its easier to check txts than to go through voicemail. For those of you who tried calling today we'll call you tomorrow after the morning meeting when we find somethings out. I promise that we werent ignoring your calls just a lot going on today.
June 17
They held off the ballooning of the aortic valve today. Her platlettes in blood was low due to clotting. The Drs found 2 clots: 1 blocking an artery to her liver and the other one is from where they had the clavical line in. So with these there it made the procedure to insert the cath (balloon) a lot more riskier. They gave her blood thinners to cause the clots not to get bigger and to keep new ones from forming. The Drs are testing to see if Haley has any blood disorders that are causing these clots. They will be watching her very closely over the weekend to see if whether or not by Monday they can do the ballooning procedure on that aortic valve. She seems to be doing wonderful. Haley is responding to our voices (which melts our heart everytime). There are things (possibly more issues) that I will post when we find out for sure. The main thing is to get more blood to that left side to get to the rest of the body
June 20
They just took her back to start the cardiac cath. It could take several hours. We should hopefully know more of what is going on in her heart because they are taking a more detailed picture thanks to some dye they are injecting in her. She has been doing really good so far. We appreciate the prayers! We need them!
Haley came through the procedure ok. She's resting back in the NICU. They got the valve opened up so blood can flow better and her left pump can work & get stronger. Don't know when and what type of surgery lies ahead but it'll be next week.
June 2Haley was taken off the" hood" and able to breathe room air now. I can kiss her sweet face now :) She had a good night too!2
They took her off her ventilator and she is much happier. Now they are just giving her time to grow stronger before her surgery. So she'll be off of it for a few weeks. Still no surgery date set.
June 23
Haley was taken off the" hood" and able to breathe room air now. I can kiss her sweet face now :) She had a good night too!
She was put back in her tent to help her levels even out. Tomorrow we will talk to more Dr's and see if they give us a clue as to when surgery is
June 25
I first want to start off and say thank you! To all those that are praying, and showing us their love and support whether it be on facebook or thru the cards being sent, the texts, or phone calls. Jeremy and I really are so thankful for everything you guys are doing. We truly feel the hand of God upon us. Haley is such a blessing. She has a long road ahead but I know one day at a time we will make it. We wanted to tell everyone something that we have discovered. From the day she was born the doctors noticed some physical characteristics about her and decided to do some genetic testing. THey also did the echocardiogram which they discovered the heart defect. The genetic test came back positive for Turner Syndrome. Turner syndrome is also what caused her heart defect. We are not worried about turner syndrome, we are more concerned about fixing her heart. THe other symptoms with TS can be handled and it's nothing that is immediate anyways. Each case is different. She may have some issues and others she wont have. We are praying for her to have a normal healthy life with TS. Here is a link if you would like to read up on TS.
www.turnersyndrome.org, this website will be able to answer many questions you might have.
As of right now they are just giving Haley time to grow stronger. They are hoping her left side will grow stronger. IT is pumping better (which is what they were hoping for after the cardiac cath). We still have no date set on surgery but we dont want to rush her. Her doctors and nurses have been nothing but great. We have had nurses request to be with Haley because they've fallen in love with her too. :)
WE promise to keep everyone up to date as much as we possibly can. Thank you all for thinking of us!
June 26
First time we (Jeremy and Debbie) got to hold her (the first time in over 10 days).
June 27
Haley's day was a lot better today:) Mommy and Daddy got to hold her (really hold her and snuggle with Haley) today not just lift her up so they can change bedding. That did us both good. They took her off the prostin med she was on to keep Haley's PDA open(aortic arch). They want to see how it will react without that med, only time will tell. So far she is doing ok without it. The drs are closely watching her heart during this. This will also kind of determine when surgery might happen. They are continuing to hope that the left ventrical will grow and get stronger. SO ARE WE!!!! This is extremely important, as this would be her best option. We love you! and Thank you for your prayers!
June 29th
It is so true what I said at the very beginning when I wrote that first note. That things can change so quickly and that its an emotional roller coaster. Emotional roller coaster kind of puts things lightly. With that being said here is the latest. On Monday they took Haley of the Prostin med to see how her PDA and valve would react. Her artery and PDA stayed opened just like they hoped and she was doing really good, but her right ventricle was acting stressed and leaking some blood. So after the dr's talked again, they put her back on the prostin medicine to relieve that pressure. Well last night they told us they were looking at the one ventricle repair (basically making the right side do the work of both sides). We were very crushed at this news because eventually she would have to have a heart transplant many years down the road. Today the doctors approached us with another option. They told us of another procedure called the Hybrid Procedure. This procedure would put bands on the bilateral pulmonary artery and a stent in the PDA. This would restrict blood flow so her lungs would not receive too much blood compared to her body and it wouldnt cause stress to the right side. This procedure would give her time and her heart time to grow. We would have to do followup appointments every other week, keep in touch via phone and also have in home visits from a nurse. PRobably in 6 months they would re-evaulate and see how she is doing. If the left side has not grown like they want then the possiblity of the one ventricle repair would still be the route they want to take. This surgery is a major surgery (well 3 major surgeries split up over time.) This surgery is very risky and even more so because she has Turner Syndrome.
We are of course praying for God to grow Haley's left side ventricle! They are possibly talking about surgery on Friday (in 2 days). We are unsure if it will happen that fast. WE got a call from the nurse tonight and Haley might posibly have an infection on her arm from where she had some of her IV pokes. They are taking cultures and treating it with antibiotics just in case. So we wont find out until tomorrow about her surgery date and what surgery option that we will be going with. We will keep you updated as soon as we know. We thank you so much for your prayers. Haley is a feisty little girl and such a fighter!
Specific way to pray for Haley: Pray that this left ventrical will grow stronger and also bigger(capacity)
June 30
No surgery tomorrow, because Haley has an infection (cellulitus) in her left arm. Got to take care of this first. The plan is to go with the hybrid surgery (mentioned in last nights post). Wait and see game again
July 2
Good evening! I need to start of first by saying How awesome and gracious God has been to us through you. He has truly blown our minds by how He has provided. We've gotten so many messages of encouragement through FB and snail mail. Our faith in Jesus Christ is what we hold to strongly and you have been a part of keeping our faith strong by those messages of prayer, comfort, and encouragement. I know first hand that if you seek the kingdom of God first everything you need will be added to you....As I said before we look throughout those messages and prayers daily and it has helped get us through the toughest of times.
One of the toughest times came yesterday morning July 1 as Debbie and I got to Haley's bedside. She looked okay but not as good as the night before. The nurse quickly filled us in on what was going on. Haley had got upset during an ultrasound that morning and was crying for a long period of time, which is not good for a heart baby. She doesn't have much of a reserve when it comes to oxygen saturation. All that crying depleted it and Haley wasn't recovering very well. Throughout the morning she would get her sats up with the help of oxygen blowby (oxygen mask close to her face) but the nurse couldn't take it away or it would start to go down. Well Haley got upset again, not good at all! We couldn't get her calmed down. Soon our little area was filled with 15+ drs/nurses working on our little baby girl over the next few hours trying to stabilize her. We would see her oxygen sat go up and then go down and then back up. At one point Haley's sat was so low she was literally turning blue. Extremely scary for both of us! During and in between answering questions I was praying that God would honor that peace that He put in our hearts that Haley was going to make it through all this. At this time one of the drs came over and said I saw that in your paperwork that you're a pastor. I want you to know that I'm a christian, Can we pray. It was a simple prayer, but one that gave us reassurance that God was still in control. When we finished praying he told us that he had and will continue to pray for Haley and us. Wow! God is so GREAT!!! Not to long after we had prayed I saw improvements in her sats, however Haley was still very agitated so they gave her some morphine. It was during this that we really saw the fight that Haley has in her. Thirty minutes later she was still giving them a piece of her mind and was showing how strong she really is. They ended up having to intubate her again to help Haley with her breathing. So now she is on the ventilator and stable and doing well:) Today her infection was looking a hundred times better, hardly no redness to it. Haley has had a wonderful uneventful day today:) She will be on antibiotics for another a week. So IF Haley has surgery it wont be until the following week (and I stress IF). My God is able to do anything! We pray as Jesus did in the Garden of Gethsemane, Lord let this cup pass from us nevertheless not my will but yours be done. We will trust you God the same whether we're on the mountain peaks or the lowest of the valleys. We love you and praise God for ya'll.
ps. When you say a prayer for Haley also say a pray for her older Sister and brothers as this is also hard on them. Thank you and May the God that created all that we see bless you abundantly!
July 5
Quick update: Haley is scheduled for surgery on Thursday (the Hybrid surgery). Don't even know the exact time yet, just the day. They are going to let us hold her again even with her wires & tubes. (Thursday July 7) @ 8:30 am
July 7
Haley came through surgery great! She is doing good. Will get to see her soon
I thought I would write an update before I crash for the night.....
First I want to say Thank you for all the prayers! Eventhough we were nervous, anxious, and concerned there was a peace there that can only come from God through Christ Jesus by the Holy Spirit. That peace that passes all understanding. So keep those prayers coming:) We appreciate them more than you will ever know. All GLORY to the Maker of heaven and earth!!!!!
This morning we left early so we could love and snuggle with Haley before her Hybrid surgery was to take place. We got to love on her for a couple of hrs before the drs and nurses came to get her. Right before they took her the surgeons spoke with us again about the procedure and what was going to happen. It was then that things were a lot more clearer to me of why there were going with this procedure. Yes it gives Haley a chance to grow and get strong, Yes it helps not to overflood her lungs with fluid and it helps to get more blood into the left ventricle to also get to the body. However this procedure was making Haley's heart as it was in the womb. If you look at previous note (one describing the hybrid surgery) you see that they were placing a stint in the PDA to keep it open. This is and has replaced one of the medicines she was on. When we are born that PDA closes because the heart takes on a new role now that we are breathing oxygen. For Haley it was important that remain open. If that had closed we would not have the option of hybrid surgery and we would be looking at a single ventricle repair. This hybrid surgery was risky but not nearly as risky as the other option. So now Haley has the chance to get bigger and stronger before any other measures are taken. With that said we still are asking and praying for a miracle. This wasn't a one time fix it deal for everything. The left side still needs to grow bigger and stronger to be of adequate size to handle the blood flow she needs. They are still talking about reconstruction of the arch (at a later date) and there is another valve that needs to close that is being watched (not a serious issue right now). So we're not out of the woods yet. The surgery today was a victory but a small one. (We'll take it!) If that left side doesn't grow they will have to do the single ventricle repair (3 major surgeries broken up over time). Don't know yet of how much time they are going to give Haley. We will no more as Haley recovers. THank you for your prayers. That's it for tonight, I'll post more tomorrow.
p.s.
I hope it's comprehendible. I have had a long exhausting day so i know you'll forgive me:)
Peace and love to you all!!!!! The kind that can't be explained (that passes all understanding that can only come from God through Jesus Christ by the Holy Spirit)
July 10
This is going to be as short as I can make it tonight (maybe) because I'm ready for bed. I almost didn't write an update but couldn't help it because God is answering your prayers and you needed to know what's going on. Just a few days from surgery and Haley is doing great! So great that they gave her some milk through a feeding tube to coat her stomach to get her ready to start eating. Haley hasn't had anything foodwise in her stomach since she was just a few hours old. They are also going to try and take her off the ventilator tomorrow morning. Haley is recovering so well from surgery! We are extremely excited that tube isn't going to be there anymore and we'll get to hear her cry. Her lymphedema (swelling and puffyness) is almost gone. She is starting to look like a baby and not the Michelin Man. Haley's legs and feet are down to the size they need to be. It is so wonderful to see that swelling going away. These are all great steps in the right direction to be coming home. YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Good Night! We love ya and thank you for your prayers. Praise God Almighty
July 12
She got her breathing tube out! We walked in this morning and she was sucking on her paci. She was so bright eyed!!!!!!! It was so good to see her like that. Turned off all her medicines
July 13
We need your prayers! The drs are putting Haley back on the ventilator, she was working to hard to breath. Her blood gas came back that she was acidotic, meaning not good blood flow to her body. Right now we have many questions and not very many answers. They are putting her back on some of her meds. Heavily leaning on the Lord. We gained baby steps everyday and now in a few hrs we're taking giant leaps backward
Well good news its not her heart, it could mean an infection or too many changes too fast???? We wont know for a few more days, which means we're here for awhile longer. I just have to remember it better it happened here than at holme. Thank you for the continued prayer. Jeremy and I appreciate all your support for Haley. My God is a big God!!!!!!
July 15
Haley is doing pretty good. She is stable. The drs are taking things a lot slower this time around. So far the cultures they have taken have come back negative. We still have afew days to completely rule out that an infection was the cause of her event the other day. Haley had an ultrasound to check her clots and PRAISE THE LORD those are all gone! Again we're making some progress and Haley absolutely looks wonderful today, pink and fleshy not grey and marbled looking.
July 19th
Just wanted to write a little something before going to bed. I know it's been a while since you've gotten a more in depth update. Sorry for that. We still appreciate your prayers and words of encouragement. Yesterday Haley was taken off the ventilator. She has been doing great today without it. And that's all they did this time. The drs are taking it one step at a time this go around. They are starting to back off one medicine (milirone) and increase another medicine (captipril) which she will be going home on when that time comes. This is a medicine that helps with the squeeze of the heart. Pray with us that her oxygen saturation will remain up and that her lungs don't get to much fluid in them so she will be able to stay off that ventilator. Haley's staples were removed today. Didn't get a final count but there were many (atleast 15 -20 which is a lot on a little chest). She is stable and still showing that she is a fighter. THANK YOU ALL!!!! WE LOVE YOU! GOD BLESS!
July 22
What a week!!! Haley had her ventilator taken out Monday. Tuesday and Wednesday were little changes on her meds. Yesterday(Thursday) they started her on very small feeds to wake up the gut and see how she does with feeding. All week we've had a few rough patches throughout the day except yesterday, Thursday Haley had a wonderful day. For us it was another week of ups and downs, but the ups far outweigh the downs:) Thank you for your continual prayers on Haley's behalf and ours too. God is faithful to hear and answer your prayers. I feel I need to say something before I go on. God through Jesus can and will take care of you the same way He has taken care of us. The Bible says to seek His kingdom and His righteousness and all the other things will be given to you. Matthew 6:33. We are a testament to this! Look at what is going on and how God is showing himself real to us! If you are one that needs to see to believe then open your eyes and see. Debbie and I are nothing spectacular to deserve more than anyone else to deserve more than you. Walk with Jesus and lean on His ways not on what you think are His ways. We love you and Thank you so much for your prayers because God is answering them. We still don't know what road that we'll be taken on with Haley, but one thing God has promised is that He will be there with us to the very end. He proved that to us day in and day out. Our van needed to be looked at, it has been running hot. The airconditioning wasn't working very well. There was problems with the brakes. We felt that it was time to get some things fixed before making any trips back home. So we drove to a place that a friend recommended and as soon as I saw it I was like no that's not the place to do the work we needed. It looked a little rundown and it was a small mechanics shop. That's not the reason I didn't take it there, they looked like they were really busy and wouldn't be able to get finished plus it just didn't feel right. We then pulled over to a gas station and Debbie looked up Chevy dealers on her phone. McCarthy Cheverolet came up and it was somewhat close to where we were. We took the van there and what wonderful people. We knew the van would have to be left there overnight, over a few nights. There was an Enterprise just down the road, eventhough we didn't have the extra money to rent a car that was our plan. Ken from McCarthy asked what we were doing far as transportation and we told him. He said no that we have a loaner car for you and it wont cost you anything but a little gas. So we are driving a 2011 Chevy Cruise, a very nice little car I might add. I was impressed when we left just in this fact alone they went above and beyond for us. We had small talk, like where you from and what brings you up here. We told Ken what was going and why we were where up this way. A little more small talk and then Debbie and I were saying goodbye and talk to you tomorrow. (This happened on Wednesday) Thursday rolls around and I called Ken back. He told me all that was wrong, this was plugged that was plugged here a plug there a plug everywhere a plug, plug.;) The van needed a new radiator and other things and he said they were going to change the oil. I told him we just had the oil changed not to long ago. Ken said no we are going to get you going fresh since it had been running hot. Then I asked the next question, the big and dreaded question, How much are we looking at? Ken didn't know that Debbie and I have a limited budget. He told me that he had talked with the owners and been telling people our story. They decided NOT TO charge us!!! I still get teary eyed thinking about it. Ken told me how our story touched him (the little we told him) and he could tell that we were strong by looking into our eyes. If there is strength in our eyes it comes from Father above and not of ourselves. ALL PRAISE AND GLORY TO GOD ABOVE!!!! Be encouraged today as we have been! Remember Matthew 6:33! We love you! Thank you all!
July 24
Well since my status never got copied to Haley's page I will try and go back a little and update yall. Haley has had good moments and bad moments. She had her two IV's taken out, the one in her leg and the one in her collar bone area. They turned off her milrinone, but because her cardiac output was not where they wanted it, they turned it back on and so they had to put another IV in her arm. So now both arms have IV's in them. Today her blood work came a little more acidotic then they liked so they decided to put the oxygen mask on her to help her take deeper breaths. She is actually breathing room air, it just helps fill her lungs a little more. She just needs extra time to get her lungs strengthened. Dont really know how long she will have to have that on, and what lies ahead. All the rest of her numbers look pretty good, she had some stress on the heart, so they dont want to add any more so that's why they did the oxygen mask. Not sure how soon she will actually get fed, they are trying to get everything else settled before they add extra work of the stomach to the heart. I hope this makes sense, my brain is very tired.
July 29
Sorry havent updated on Haley as much, the other 3 kiddos have been here for the week. Haley is doin ok, she is getting fed thru her feeding tube into her intestine, and so far they are just making sure her liver levels dont go up. they think it is jaundice b/c the ultrasound didnt show any clots. She was in clothes today, and got to try out a swing! Plus we can hold her anytime we want now, her wires are to a bare minimum :) We still dont know of a time frame yet of when we get to go home, we just have to take it one step at a time with her because she's ornery ;) and likes to take things her way.
August 15
We're going to be speaking to a surgery consultant this morning about a possible install of a Gtube for feeding. Haley just isn't taking near enough by bottle. The goal now is 75mls every 3 hours. She is only taking 5-10 of that by bottle. What she doesn't take by bottle gets pumped in through her nasal feeding tube. We are still going to keep working on the bottle even after this procedure. The Gtube is just a temporary thing that will be done away with when she's a little older. WE APPRECIATE ALL OF YOU AND THANK YOU FOR YOUR CONTINUED PRAYERS!!!!
August 19
Haley had surgery to place the gtube and is doing great.
August 21
We got moved to the regular floor.
August 22
They are already discussing dismissing us. We have to do it all on our own for 24 hours. Give her medicine and feeds for 24 hours straight as if we were at home.
August 24
We got DISCHARGED!!! Headed home to Kingman :)
We also have so many people to thank, for putting benefits together for us and raising money for us. Calvin & Cari, Darren & Stepheny Butcher, Jennifer Graber, Rise & Fire, Melinda Abbott, Dr. Grillot, and Tammy Miller allowing Lexi Miller and Rylee Reid-Turpin for the lemonade stand. also to the Kingman Chamber, and Phil Caton and the rest of the bands helping out that day. We plan on having a thank you party once we get home again and settled. Thank you. Huge thank you to my mom Jeanette Madersky for watching our kids and my brother and SIL Mike and Steph. If you have any more questions please let us know.
We also need to recognize my other kids Alasandra-7, Joseph-6, Noah-2, they went through a lot this summer too!
We are not finished with our journey yet, but just starting. Haley has a long road ahead of her.
Debbie & Jeremy Manthe
Saturday, September 24, 2011
Been awhile
well as you can see it's been about a year since I last posted, a lot has changed in our lives. I hope to be able to keep this up to date a little bit better. We found out we were pregnant last october with our 4th child. Found out it was a girl and was very excited to complete our family evenly. Haley Brooke entered this world June 15 around 12:35 am. She only weighed 6 lbs 3 oz and was 18.5 inches long. That really quite shocked us because of how big our other children were. My labor started with out pitocin (which was what I wanted). I saw my dr that Tuesday and he stripped my membranes, we walked the mall, and because i still didnt have regular contractions we went and picked up the kids and went home. Soon as I got home I started to put groceries away, and started supper. I started having contractions every 3 minutes apart. So we decided living 45 minutes away to head to the hospital. I was already dialated and didnt know how fast I would go. Well we got to the hospital around 8 pm, and from there my labor was getting very painful. I was able to get an epidural. I started having baby heartbeat decelerations so they put me on some oxygen. That helped alot! By midnight I had finally gotten to an 8, and my dr said he would check me in 20 minutes. when he came back he decided to stretch me on my next contraction, then I was ready to push. When she came out she had the cord wrapped around her neck,and had swalled meconium. But they were able to clean her up and out. she was so beautiful! With the longest eyelashes I had ever seen. After they handed her to me jeremy went to go make a few calls. the one doctor who had cleaned haley up said they had noticed some strange things, like a double layer of eyelashes. They gave us some information on lymphedema, her feet were swollen as well. We got moved to our room about 4 am. Didnt get much sleep that morning. around 9 am they came in to take her picture. We also had several doctors come in and ask question and look at haley, telling us she was born with a possible genetic disorder. THey wanted to do genentic testing. Well they also came in around 11 to do an echocardiogram to look at her heart. that's when we found out the devastating news. It was noon and the doctor said they were going to move her to the NICU and told us they were concerned about her heart. It was very small, and very serious. Jeremy and i were in tears. My mom was bringing the kids in later to see her because they hadnt met her, and Stephanie my SIL hadnt even got to hold her yet either. Not really sure how much time passed before they came in and told us they were flying her via helicopter to kansas city. I think Jeremy and I ran on adrealine from there on for awhile. Once the kids got there we were able to take them to see her in the NICU before they flew her. Jeremy was going to ride but something happpened and wasnt able to. They let me out to go home and pack. I met up with Darren and Stepheny Butcher (who decided to come to Kingman to work with us in the Church at the same moment haley was born). we had no clue the real reason God was sending them! I gave them the keys and headed back to Wichita to meet up with my brother and Sil. Mike & Steph drove us up here to KC because we had only had an hour of sleep. we got up to KC around midnight and went straight to be with Haley. We were allowed to stay in the RMH rooms in the hospital. We were in NICU pod 56. we were able to have a corner spot which was better a little more private. the next few days were a blur. I do have recorded notes from facebook from haley's page that was created to keep everyone up to date. I will share those so you can also experience and understand more of what we went through.
Once I find a way to post those notes I will.
Haley was diagnosed with Turner's syndrome (which affects her growth) and a type of HLHS. Her left ventricle is too small and her aortic arch is deformed. I have to go now, but I promise to get back on the blogging band wagon soon.
Once I find a way to post those notes I will.
Haley was diagnosed with Turner's syndrome (which affects her growth) and a type of HLHS. Her left ventricle is too small and her aortic arch is deformed. I have to go now, but I promise to get back on the blogging band wagon soon.
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