Tuesday, November 27, 2007
I liked this quote as I sometimes feel that I am still developing that potential I have for courage throughout this mostly difficult journey. Some days I truly feel exhausted and that I cannot possibly emotionally carry one more burden and then some days I find the strength to smile and remember the great goodness that makes up the God that I know and love.
I wish I could say that these past few days have been easier then my last email. If anything, they have been some of the most difficult but I am grateful for those moments when with great clarity my heart is reminded that God is working small miracles with my sons and that I must not forget that these things are happening to preserve my sons and give them one more day to carry on and fight to grow out of their extreme prematurity and all the complications that have come with it.
Just when we thought perhaps both boys were finally turning a corner with their infections (Jonah had a real battle and they were changing his antibiotics, consulting with the infectious disease doctor and running all types of tests because it took him so long to respond to his medications), Noah started to show some serious signs of respiratory stress. Bless our sweet son Noah. Tests from yesterday showed that Noah has since developed the same bacteria infection that Jonah has been suffering from these past couple of weeks. The bad news is that the infection has settled in to Noah's lungs and he was maxed out on his oxygen yesterday, in fact at one point he desaturated so far that they were manually bagging him for nearly 8 minutes to try and stabilize his breathing. Shortly after that they had to return him to the oscillator, the breathing machine that he was on shortly after birth. It is a high frequency breathing machine and a more advanced ventilation system for only the chronically ill babies with serious CLD (Chronic Lung Disease).
I was at wit's end yesterday. Last week we had problems with nurses who were unprofessional, not following the proper protocol for the isolation room that both Noah and Jonah are in due to their infections (long sleeve gowns and gloves must be worn at all times and between babies everything must be changed and hands must be sanitized). Last Wednesday the particular pair of nurses we were having problems with forgot to give Jonah one of his antibiotics and it wasn't discovered until Thanksgiving day by another nurse. I was so upset, as was Shane, that we filed a complaint detailing everything that had happened.
When I found out yesterday that Noah was now ill with the same infection that Jonah had I was furious. I am so grateful there are patient representatives and good social workers who work closely with families to assure that the best possible medical care is given for all patients. I was able to collaborate with both and today a representative from the Center for Disease Control visited the hospital and came in to talk to me and said she would be making some changes and speaking with the nursing staff.
Up until now our motto has been that we want the nursing staff on our side and we will only draw attention to those details truly deserving attention. I always run my frustrations by Shane as he has a more logical ability at deciding if the situation really merits follow up with a supervisor. It is so easy to be picky about so many things when your child is going through long term care in a hospital that we try to be careful to only pursue those things deserving of attention.
I was grateful that there were people willing to listen and take my concerns seriously as I really had a hard day yesterday and I was completely heart broken to learn that Noah was suffering from a second infection when he had just only started to recover from the staff infection. The hardest part was watching them put him back on the high frequency oscillator. He fought the machine for several hours and finally they had to put him on an IV drip for sedation and pain relief so as to calm him enough to relax and allow the machine to breathe for him. The oscillator is a very unnatural way to breathe and it is hard for babies to not fight it, especially considering it has been 3 weeks since he has been on one and he has since adjusted to the regular ventilator.
I think the hardest part about all of this was we were so close to starting him on a short round of steroids so as to try and extubate him to see if he would tolerate the CPAP and if he did well then I could be holding him. I have been longing for this moment for the past two months and since I get such limited opportunities to even touch my sons at all it was very difficult to have Noah be set so far back in his progress.
Jonah, thank goodness, is having a good week. He is not completely clear of the infection and still showing some signs but he is doing better and is much more stable. Today they were a bit worried about the reservoir in his head. The fontanel is starting to bulge, meaning the fluid is not draining fast enough underneath his scalp and today they decided to perform a tap and removed a shocking 15 cc's (half an ounce) of spinal fluid. The course of action right now appears to wait and see if he can start to absorb the fluid on his own but if he continues to require taps to remove fluid they will eventually go back into surgery and replace the reservoir with the shunt which would be permanent in nature and require follow up surgeries and evaluations for life. I had hoped the reservoir would work but because his bleeding was so severe I knew it wasn't likely that it would ultimately replace the shunt, although it is still possible.
Today I am in somewhat better spirits. It really is a day to day experience and I just keep trying to forge ahead, some days with a better ability for courage then others but the important part is that I keep trying.
Thank you all for your well wishes, we are so lucky in friends and family. We are so lucky in our belief in God and for the gospel. I still struggle a lot accepting and understanding that this is my life now and that my sons came to us so early but I know with time I will have a better understanding of God's plan for our family.
Keep us in your prayers as we are praying fervently for better days ahead.
Love, Shane and Michelle
Below are more recent photos of Noah, one shows Noah grabbing on to Grandpa Langston's finger. When he is feeling well, Noah loves to grab on to fingers and loves his Daddy's touch. Just this last Friday when he wasn't feeling well and they could not calm him Shane reached in and laid his hands on his back and began to talk to Noah and he instantly calmed down. It was the sweetest thing I have seen, I think we have a Daddy's boy on hand! Can you see that he has beautiful "saucer" eyes (as I like to call them)? He has Shane's eyes and Mommy's head full of dark hair!
I thought you would enjoy some updated photos as both boys have doubled their birth weight. Below are fairly recent photos of Jonah. One is of Shane helping the nurses change his bedding and for the first time really holding his son in his hands. I also included one of Shane reading to Jonah, he enjoys reading and singing Christmas carols to his sons. I also included one of me changing Jonah's diaper.
Tuesday, November 20, 2007
Monday, November 12, 2007
We had a great morning today and I am learning how important it is to be grateful for small miracles. We have been so worried about our Noah the past couple of days. His lungs did not improve this past week and the doctor wanted to start him on a low dose of steroids yesterday. We have been dreading this option as if he should require a prolonged use of steroids it can cause developmental delays and even increase his risk for cerebral palsy. The low dose that Noah started yesterday does not have as great of side affects so we are praying fervently that this week we will see improvement and indeed today he seemed to be doing much better. His oxygen settings were lower and the respiratory therapist said that his lungs sound better. We still have a long ways to go but you learn in this experience that you have to celebrate the good days so as to keep your spirits high and your faith on course. We are hoping fervently for a miracle this week with Noah.
Both boys are enjoying their feedings every 3 hours and Jonah is now 2 pounds 12 ounces and Noah is 2 pounds 9 ounces. Noah still looks bigger then his brother but he has a fuller face and frame and Jonah has a leaner frame. I am happy with their progress, as each of them look so much healthier then when they were born. The nurse said early this morning that Noah looked so hungry, he had his whole fist in his mouth so she gave him a pacifier and he sucked like crazy, she said it was the cutest thing. So we know both boys are loving their feedings and it is helping them a great deal.
Jonah is stabilizing compared to earlier this week when he was having so many struggles. I really thought he was developing an infection or worse that his reservoir is not relieving the pressure from the bleeding in his head. The neurosurgeon took a look at him Wednesday and did not seem concerned. He said the reservoir is doing exactly what it should do.
Please pray for both this week, especially Noah that his lungs will improve enough that the steroids will not need to be repeated. We pray that the Lord will preserve both our sons but we are also realistic about Jonah and his high likelihood of having disabilities related to his bleed, this does not mean that we have stopped believing that miracles can take place. We know that they can. Right now we are praying that Noah will not be faced with similar statistics related to disabilities and prolonged use of steroids would put him in that category.
I have come down with a nasty head cold so I was grateful to have Shane and his mom down this weekend. They did a lot of visiting over at the hospital so I had a chance to rest. I am sure the stress plus living at the Ronald McDonald house with so many families and being in a hospital every day has taken its toll. Today I slept most of the morning and when Shane came back to tell me how good both boys looked I was so happy I remember getting excited and I started thinking of how much I wish for them to live normal lives, serve missions, etc. The primary song, “I Hope They Call Me On A Mission” came to my mind and I remember feeling so excited at the thought of our little boys singing that song in Primary and hopefully one day serving missions.
We have great dreams for our sons and even with the challenges will come the blessings and their lives will be rich ones, no matter what they face. God has a plan for our sons and I have felt this more then once. Just yesterday a twin girl was transferred to Children’s Hospital, she was born at 28 weeks but her twin did not survive. I remember how my heart ached for that sweet family, going through this experience has deepened my empathy for all going through the challenge of having premature children. I also remember thinking that our little boys were born at 24 weeks and yet they have survived. Surely that is the hand of providence and surely God is sustaining them through this difficult time.
Please pray for both and thank you for remembering our little family.
Love, Shane and Michelle
Friday, November 9, 2007
Michelle does not have access to the blog anymore. I will be posting her update emails.
“If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.” Martin Luther King, Jr.
Friends and family,
Noah joined us in Fresno Monday night. This past Sunday, in nothing short of a small miracle, he was doing so well that they switched him to a regular ventilator. His oxygen requirements continued to be so good that by Monday morning I was on the phone with the Bakersfield physician begging him to get Noah here should they determine his PDA valve was still open. His echogram showed that indeed the valve had started to reopen and after a second dose of medication had not closed. So the team was sent out to pick him up that afternoon. I was so thrilled at knowing both of my sons would be close, not thrilled at the thought of Noah having to undergo surgery but thrilled to not be separated from him any longer.
Noah didn’t tolerate the flight well, in fact once he landed a team of nurses, physicians and respiratory therapists rushed to get him up and breathing on his own again. It was frightening as a parent to see him looking so pale and fragile but I had faith they would help him stabilize. That night within maybe 45 minutes of me leaving the hospital to eat dinner I received a phone call from Noah’s doctor, I remember thinking to myself, “please do not tell me you couldn’t get him resuscitated….” Thank goodness the call was merely to say that they had to get him into surgery that night because his oxygen requirements were too great and they didn’t want to switch him back to the high frequency oscillator and loose the opportunity to close that valve.
So we rushed back over to the hospital to send him into surgery and since his oxygen, while still high, is so much improved that we know (as well as the surgeons and physicians) that he really needed this surgery.
It has been an exhausting week so far. From fighting to get Noah here (which included being an intermediary between doctors trying to get them to communicate from Bakersfield to Fresno, not by choice but by the lack of motivation from our Bakersfield doctor) to dealing with nurses that I am not very fond of to watching my two boys really struggling. Yesterday was the boys first month birthday, has it really only been a month? It feels like an eternity to me.
Noah has been doing fairly well since his surgery but our sweet Jonah has had a really bad week. He has been swinging constantly on his oxygen settings and really fighting everything, he is so unhappy some days and I have to remind myself over and over that he is going to pull through and that he will make it. At one point yesterday I just kept saying to myself, “I am not giving up on this little boy and therefore he cannot give up on me.” We really have had some scares in the past three days with our little Jonah. He has so much more to recover from and he is fighting to heal from three different surgeries, with at least one or two to come.
Both boys started feedings again today, Jonah 1.5 ML every three hours and Noah 1.5 ML every three hours. Noah is up to 2 pounds 11 ounces! I can hardly believe it and he has filled out so much. I remember looking at him Monday night and I couldn’t believe that in nearly two weeks he had grown and changed so much. He is so much bigger then Jonah but that is to be expected as Jonah by far has the greater challenges to overcome.
Right now the two boys are next door to each other but still not in the same room. I can’t wait until this happens as it will make our visits so much easier.
Shane returned to work last Thursday and has been actually working from home until next Monday. He will be coming down tomorrow and I am looking forward to his visit as it is so hard to go through this without him. I am grateful my father is with me and it is good to have the priesthood as he has given Jonah two blessings already this week and Noah one before he went into surgery.
It feels like such a long road as we have until at least the end of January before heading home (very likely it could be February or later). I wish they could go home together but that seems to be a rarity when it comes to twins.
Some days I have a hard time envisioning them big enough where they can feed and lay out in an open bed, I’ve become so adjusted to their enclosed incubators and not being able to touch them that it is hard to believe they will actually be able to do normal baby things in the next couple of months.
My days are good and bad. My moments are very much the same. I find great courage at times and sometimes I feel so hopeless, I think the hardest times are when I see one of my boys in a lot of pain being so tiny and fragile, it is unbearable. Thank goodness for prayer and family, I wouldn’t make it without either of them. I’m still struggling to understand why our family, why us? Why were we chosen? I’ve listened to another mother here whose twin boys were born at 27 weeks and she always tells me how strong I am, how she couldn’t do this and I always think that you just never know what God will call you to do. I have said this myself before to others going through trials but now I realize how unwise it almost seems to say such a thing, you just never know what God will call you to do and when he does you’ll have to find the courage to work through it. I didn’t ask for this to happen to my sweet boys and I think in dealing with it I’ve gained a testimony that it is not a matter of strength but a matter of capacity and what you don’t possess the Lord will provide.
I have run into several members of the church, three nurses here are members and they all have taken the time to talk to us. In fact, one is the daughter of a couple who lives in our Bakersfield ward and I worked with her younger sister in the Young Women’s program. I am always grateful to find members of the church away from home.
Thank you all again for your continued prayers and concern. We appreciate your love and support and our boys are growing and thriving because of your faith. Please don’t forget us as the road we have to travel is a long one and there is a long way yet to go.
Love, Shane and Michelle
Michelle does not have access to the blog anymore. I will be posting her update emails.
“Even miracles take a little time” –Unknown-
Friends and family,
Shane has not had the chance yet to update the blog but eventually this message will appear online as well as my email earlier this week.
It has been a very, very long week. Jonah just came out of his third surgery and each one has been a success. Now our biggest hurdle will be to keep him infection free for the next several weeks while he heals. With each surgery a baby this small is at a higher risk for infection and sweet Jonah has already undergone three with at least one to two in his future.
Wednesday they fixed Jonah’s open PDA valve near his heart. Recovery was difficult and our sweet boy was in a lot of pain. Yesterday was a hard day for me as a mother. I’ve learned quickly how to tell when he is in a lot of pain, even at his tiny size. He was so unhappy yesterday morning, thank goodness the nurse on duty pushed for a medication drip so he would have constant pain meds. It was the best thing she did because as soon as everything was set up Jonah began to finally relax. These small babies have a hard time recovering from surgery and are very unstable for the first 48 hours in their oxygen and blood pressure needs. I also found out that the PDA surgery is one of the most painful surgeries infants can undergo because of everything that is involved with getting to and closing that valve near the heart so I am sure that was affecting how Jonah felt yesterday.
I was also frustrated yesterday because they were supposed to do his head “reservoir,” which he has been desperately needing to aid with the bleeding in his brain. The nurse called me at 7:40 AM to let me know I had 20 minutes to get to the hospital and when I did the surgeon called and said because of an emergency surgery Jonah’s surgery had been put off. That morning he was in so much pain that I was a bit upset because the surgery had been put off (at the time no one had really told me why the surgery had been canceled) so I pushed until I finally got a physician in to assess Jonah and explain to me what was going on. I was glad I pushed for it because he increased the pain medication and did a few other things to help comfort Jonah as much as possible including ordering “cautious handling” instructions for the nurses (basically meaning nurses are only to touch him on an as needed basis to reduce his level of stress and discomfort).
I have learned, through my own problems conceiving the boys, that you have to advocate for yourself. We don’t live in a world of proactive medicine so if you need help or attention you have to fight to get it. Sadly this is just the way that it is. So finally after pushing for a doctor to come in and look at my son I got some answers.
Jonah at least slept well yesterday and last night, he did have some rough spots but overall at least he looked peaceful to me which put me at ease.
His surgery this morning went well and the reservoir should start helping with his swelling, pressure and drainage of the blood that has been building up in his head almost since birth (his bleeding started on day three). It would be such a miracle if he was able to resolve all this bleeding on his own without a shunt but the neurosurgeon did say that at this age it is a small group of infants with grade four bleeds who heal on their own without a shunt. We still have hope and believe though that it could still happen and if not, we are prepared for the shunt surgery.
All in all I am praying little Jonah will finally have the relief in his little body that he needs in order to really heal, grow and do all the things he needs to do so he can come home to us.
Yesterday Noah also was having more P.I.E. issues with his lungs (Pulmonary Interstitial Emphysema), this is caused basically by long term use of the high frequency oscillator which his lungs are continuing to require to help him breathe. I remember calling Wednesday morning to get glowing reports from the NICU physician to calling that night and finding out the afternoon x-ray was showing the emphysema symptoms in his right lung and that they were collapsing it again in order to allow it to heal. Yesterday morning when I called to check on Noah I made the mistake of asking the nurse how his morning x-rays looked and she told me there was no change and I immediately went into panic mode as this is a very serious issue and if it doesn’t clear up it can cause serious, serious problems….even more so then the bleeding with Jonah. A few hours later Shane called me to say he spoke with the doctor and that the nurse and misinterpreted my call, the emphysema was gone, yes…his lungs are still immature and needing development but the emphysema was gone. Needless to say, I was very unhappy with that nurse!
I also started talking to Jonah’s nurse yesterday about getting Noah down here. We were talking about Noah’s still open, yet very small, PDA. Everyone here, from physicians to nurses are saying that his open PDA will be an eventual cause for surgery. So Shane and I discussed and we are making it known to the physicians in Bakersfield that as soon as Noah is on a conventional ventilator we want them calling Fresno to get Noah down here for his PDA and so ultimately the boys can be in one place. Yes, two hours away will still be a challenge but at least both boys will be together.
I will see how long this takes to happen but we are pushing for it sooner then later as living here in Fresno comes at the cost of me not seeing my baby Noah. I know that I am meant to be with Jonah because of his critical situation but I feel like I am missing out on so much with my Noah and all I have for information are phone calls (and we can see from yesterday this can be a problem!)
Shane went home Wednesday night but plans to travel back down this afternoon to be with us. My father did get in late Wednesday with my brother. It has been nice to have them both down here and it is good to have three generations of “Coy” around (Jonah’s middle name is after his grandfather and uncle). It was really good for my brother to see Jonah, he has been really worried about my boys and I’m glad he got to come down. He is a fireman and has EMT training so he was following a lot of the assessment procedures the nurses would do with Jonah and he was amazed at how “small” everything was.
It really is amazing what medicine can do for these babies, all in all most at this gestation only have a 50% chance of survival (I can finally say that without breaking down in to tears at even the thought) but both our boys have made it to 4 weeks and are in a group that has a better chance of making it home. Also, several of the nurses who have worked with Jonah keep saying how hard he fights and what a fighter he is. In fact, just last night his nurse was saying babies his age have the best chances at survival when they come out fighting. I hear this about my Noah too, God has given them fighting spirits and no matter what they are miracle babies and just as the quote says above, miracles take time to happen and my boys will need their time to grow but I really believe that the love and prayers that so many of you are saying for them are keeping them alive. I know Shane and I have an amazing amount of love for these little ones and we want them to have every chance at life. It is hard to know that their future may have its challenges and that maybe one of them medically may not be in that normal group of children but we do know and I have personally felt, that each has a mission and God has sent them here for a certain purpose. We also know that there is still time for many, many more miracles and both still have an opportunity to make it and live life just like normal little boys would. Either way, they will be loved and hopefully we will be able to do all that God expects of us as I believe he has entrusted us with two special little boys.
Keep praying, we still need a lot of miracles and they have so far to go but they have come a long way.
We are sorry we cannot answer every phone call and email that you send us but we do know you love us and support us and for this we thank you. We are blessed in family, friends, and the gospel of Jesus Christ and when all is done, that will be all that matters.
Love, Shane and Michelle
Thursday, November 8, 2007
Michelle does not have access to the blog anymore. I will be posting her update emails.
Friends and family,
I just spent 20 minutes writing this lovely email to all of you and then yahoo closed on me. So here we go again.
This is the first time I have been near a computer since last Thursday. I am unable to update my blog as the hospital library’s internet access blocks the Web site. I will probably have to work out sending emails to Shane who can upload them when time permits. Jonah was transferred Thursday afternoon to the Children’s Hospital of Central California in Madera (right next to Fresno). It is an incredibly hospital, completely dedicated to the care of children and children are flown in from all over the country to be treated for various ailments. Their NICU is an entire floor of the hospital and they have surgeons available for all the issues that come with premature children.
Thursday morning they found what appeared to be a perforation in Jonah’s intestines and this can be fatal with small babies so they knew they were going to have to transfer him. The miracle that happened Thursday was hours before Jonah was breathing so well (even on his own at one point!) that they were able to switch him to a conventional ventilator which made his transfer possible.
We went home and frantically packed to make it down before he got out of surgery. They performed an ostomy and will later go in for another surgery to actually fix the tear, for now he is too little and too unstable. He handled the surgery well and even did really good with the transfer, which I was worried about as he is so sensitive with noise, light, etc.
The past couple of days his oxygen and blood pressure has been fluctuating but much of this is due to his PDA valve that is still open in his heart. They wanted to do this surgery later this week but the nurse was saying today that he has been unstable the past few days and if they can, they will put off the surgery for awhile longer to let him stabilize and recover more.
His head circumference was staying at 26.5 the past few days and suddenly today it jumped ½ a centimeter, which was quite a change. The nurse said she measured him three times and when she told the neurosurgeon they said if it jumped again tomorrow they would do a “tap” to relieve some of the pressure from his head. The neurosurgeon spoke with us Saturday and said that because of his size they will not do anything permanent like a “shunt” until he is 3 or 4 pounds. They have smaller steps to take first to see if they can relieve some of the bleeding/pressure.
All in all, our little Jonah is a fighter. He has fought hard to get to this point and has had his small miracles too. We are so proud of him for fighting and we also know that God would not have prepared his lungs hours before his transfer if he did not have a special mission in mind for this little boy.
We did have the “comfort care” talk once again from the doctors. “Your son has to go through several surgeries, he will be severely disabled, are you sure you want to put him through this?” It is not our position to make the choice of life and death, we both feel strongly that our son deserves every chance at life and that God has put in his path small miracles to help him come along this far. We just have to have the faith to trust him that even if Jonah is severely disabled he will provide us with the ability and courage to provide for him and love him unconditionally.
I have often thought that at least I was able to work with children with Cerebral Palsy and other disabilities as my father was a special education teacher for years. I have been around these children and they are so loving and yes, they have as much to give in this life as those of us who have no disabilities. It is hard to here though, extremely difficult, when the doctors remind you constantly that your child will be severely disabled or disabled in some way. I know that we have the ability to love Jonah no matter his challenges but it is heart breaking to hear such a thing when you tried so hard in the first place to even conceive. It comes with a range of emotions, guilt, fear, anger, frustration and also an ability to hope.
Noah is doing fairly well, he still has his challenges with his lungs but he is fighting. This morning they also switched him to a regular ventilator but he was not liking the transition so they were waiting out the day to see if it would be a permanent move. Otherwise he is doing well. He is up to two feedings of breast milk a day, 1 cc via his IV. He had his first bath yesterday, which saddened me that I was missing all these small steps he is taking. I know that I am where I am needed but it doesn’t ease the heartache much to be split up from both my sons.
I wish I could say this was temporary with Jonah but he will be here the duration of his hospital stay. Right now we have family to help over the next few weeks and we got a room at the Ronald McDonald house which is a great help as they charge a mere $15 a day to stay but in the long term I am yet able to know what is best to do. Do I split the weeks? Weekdays in Bakersfield, weekends in Fresno? It very well may come down to this but for now I will be here in Fresno for the next month or so. Shane has been with me the past few days but must return to Bakersfield either tonight or tomorrow and then my dad arrives on Wednesday to stay with me over the next several weeks. Shane will come down on the weekends and Grandma Hanna is staying at our house in Bakersfield to watch over Noah.
Thank you for your concern and prayers. Please keep praying, I know it is your prayer and faith that has helped our babies make it this far so do not forget us yet. We need your hope and courage.
Love, Shane and Michelle