Anti-climatic

Well, after all of our personal preparation for today's eye exam, the eye doctor said...the boys have immature eyes.  I think my limited medical degree could have made that diagnosis!!  After some further discussion, it sounded like that is a very common diagnosis at this gestational age.  The boys will now have eye exams every 2-weeks, and our nurse today guessed they would have the same diagnosis after their next eye exam.  The bright side is...we didn't hear any bad news!!

The boys had a good day.  No real changes, but their personalities continue to develop.  They were both just WIDE awake tonight, which is always a lot of fun for us.  Wes had a bit of a bee in his bonnet while we were doing his care and he had his breathing treatments, but after that, he cooled down, was flipped to his tummy, and just watched the world go by.  Max was much more relaxed, and I got to hold him for a few precious seconds while one of our favorite nurses, Ashley, changed his bed.  We took lots of pictures, which are shown below.  

The first one is Max yawning a bit and getting ready for a long, hopefully quiet night of sleep.

And this is Wes, all wide eyed and trying to reach his CPAP tubes so he can rip it off.  There is a running joke that Wes secretly lifts weights in preparation for his next opportunity to pull his breathing apparatus off.

Good day

The boys continue to pretty much behave themselves.  They have developed their own personalities for such little guys...all of the good traits from their father of course, and maybe some of their mother's quirky tendencies.  Wes insists on having his hands above his head (or, as I call it, playing "so big" by himself)...which is exactly where his CPAP apparatus is, so naturally he latches on to that and tends to cause a ruckus for the nurses.  His oxygen needs are still in the 40% range, but he climbs into the 50s when he gets agitated or is very awake.  One of us (usually Kate) has been able to hold him every day because he continues to be quite stable and doing well on the CPAP.  That is so awesome.  Every time we do get to hold him though, we are reminded that we cannot hold his brother Maximus.  Max is still at 38 on the jet vent and in the 50-60 range on his oxygen.  He has started to get pretty puffy again after a few days of improvement.  We are not sure  exactly sure why, and it doesn't seem that the doctors really know either.  We will continue to patiently wait and lean on God, trusting that He holds Max in His hands.

Tomorrow is kind of a big day.  The boys are going to have their eyes examined and we will have somewhat of an idea how they are developing.  Eye disease is very common amongst micro-preemies, it is called Retinopathy of Prematurity or ROP.  There are 5 stages of ROP 1 being the best, 5 being the worst.   Stage 5 is a full detachment of the retina (I think).  From what we have been told, stage 4 and 5 have very poor outlooks (blindness in some cases), stage 3 can be treated with some laser treatments, and stage 1 and 2 usually lead to potentially good vision.  These stages can improve and worsen over time, so we will try not to get do to discouraged if the reports tomorrow are not good..but we would really love a break!!  A good report would really be a plus after two heart surgeries, both boys having chronic lung disease, and Kate's Mom passing away not even two weeks ago.  We know we have so much to be thankful for...the fact that we are parents at all is a miracle from God...but our boys have so many challenges ahead of them, and I do not think that Kate or I have the capacity to handle a bad report.  But that is tomorrow, and God will give us the grace and mercy we need to handle what tomorrow will bring.

Six weeks?!

Hard to believe that it has been six weeks.  The boys are doing well.  Wes is still doing well on the CPAP, and his oxygen needs were in the 30-40% range today, which is as low as they have been since he was taken off the vent.  Max's pressures are starting to climb a bit.  He is currently at a pressure of 38, but his oxygen needs have been in the 40-50% range, which is good.  He has also been passing some good fluids and he is not nearly as puffy as he has been in the last few days.  The boys are actually in isolation right now due to a bacteria that they both tested positive for.  Apparently the NICU has seen an influx in kids testing positive for Serratia (I think), which is somewhat unusual because they work so hard to prevent the transfer of bacteria.  Right now, kids in every nursery in the unit have it, so all of those kids (10-11 total) are in isolation.  That includes Max and Wes.  Isolation simply means we need to gown up in this awkward robe thing (that is clearly not a "one-size fits all" type of garment) to be near their incubators.  It is a bit of a pain, but the upside is that we have two of the most comfortable chairs in the entire unit (a very hot commodity), and other people cannot steal them when we are not there...because the chairs are "unclean."  I have been knocking down crossword puzzles in record time simply because I am comfortable.  

The big highlights of the day was that I got to hold Wes for almost 2-hours.  Kate has been holding him almost every day because he has been doing so well on the CPAP, but today was the first time I got to hold him.  I wasn't able to do skin-to-skin because of the awkward gown things, but I was able to swaddle him, which was awesome.  He was kind of jumpy at first and he got the hiccups (which I personally hate but find absolutely adorable when my 2 1/2 pound children have them), but after a few minutes he settled down and we took a nice long nap together.  It was really a special time.  It is hard to describe, but that was the first time I have really been able to hold either one of my sons and they are 6-weeks old.  Maybe "surreal" is the best way to describe it.

Kate and I are so excited that the boys have had a good couple of days.  We are so proud that Wes beat all the odds and is breathing like a champ almost by himself.  Max's pressure are climbing, but overall he is much improved over even 4-5 days ago.  Please join us in praising God for His providence...for watching over our little boys and carrying them through a lot of difficult times in the last number of weeks.  It is crazy to believe that they have both had heart surgery and they are barely 30-weeks old from a gestational perspective.  It will be fun to celebrate Kate's first Mother's Day tomorrow...but at the same time, the reality that Kate's Mom is not with us will be very evident.  I covet your prayers for Kate, her sisters and her Dad tomorrow.  Pray that God will surround them with His love and comfort in a very special way.  

Update on the boys

The boys both had very good nights and are doing will so far today!! Praise God!! Max's pressure is back down to 32 and he has been stable there for quite a few hours now. His oxygen needs are in the 50-70% range, but that is a far cry from the 80-100% range he had been in for weeks. He is still really puffy, so they have increased his dosage of this drug that he gets mixed with the breast milk to try and help speed the passage of additional fluids. They said it takes a little time to start working, so we will keep being patient. Wes continues to do well on the CPAP and had is "pressure" reduced from 8 to 7. This is a completely different kind of pressure than what we have been used to on the conventional and jet vents and is purely to keep his airways open in case he doesn't feel like breathing for a while. His oxygen needs are also down in the 40-50% range and all of the doctors and nurses have been very impressed with his progress and ability to breathe all by himself. Kate and I obviously know that God is helping him with the breathing when the doctors and nurses stacked the odds against him making it even through the first night on the CPAP. Tomorrow will be 7-days!!

Thank-you all for the prayer support...God heard and answered our cry for help. I love the fact that the doctors are stumped by Max's recent and significant improvement and Wes' continued success and improvement on the CPAP. When I ask what they think it was that helped Max turn things around, the list is as long as it is boring. Life is so much easier when you know that God is in control!!

Prayer request

Just wanted to get a short post on here asking for your prayers for Max. After all of his improvements over the last few days, things are heading the wrong direction. He was down to a pressure of 30 on Monday, and as of this morning is back up to 44 because his CO2 has been high (indicating that he needs more oxygenated air, hence the increased pressures on the vent). There does not seem to be a real clear reason why he is back tracking so quickly. They did stop his steroid treatments for a day due to high blood pressure, but that seems to have come down a bit now and they were able to give him two doses of the steroids yesterday. The steroids do cause him to retain water, and his poor little head is super puffy right now. He looks like a very miniature version of the Stay Puft Marshmallow Man. They have started him on a drug to help him pass additional fluids.

Wes continues to prove everyone wrong by staying on the CPAP and even improving a bit. His oxygen needs have come down to the 50% range when he is calm (which is not very often). The doctors have twice prepared to intubate him and put him back on the vent, but Wes has shown his mettle and they have continued to let him breath on his own. We are so proud of Wes, but so concerned for his brother. Please pray with us that God will just touch Max's lungs and get the healing process underway. May God grant Max peace and comfort as he is poked and prodded and jarred around by the jet vent. We just feel so helpless as parents as he has to endure so much for such a small little boy. I know that Max and Wes have their Grandma's courage and desire to fight, I just don't want them to have to rely on that every second of the day.

God is good

Wow.  It seems like a lot has happened since I last posted an update.  Wes is still on the CPAP machine and therefore breathing on his own with only some assistance to keep his airways and lungs from collapsing.  The doctors have indicated that he is toeing the line of being re-intubated and put back on the vent, mostly because he seems to be working very hard and has not really found his rhythm yet.  They don't want to exhaust him, but he does have almost 3 1/2 days under his belt off the vent.  We are so proud of him!!  Even if he does have to be put back on the vent for a period of time to allow him to regain his strength, the last few days have been a real gift from God as He has given Wes the strength to outlast all of the doctors' and nurses' expectations.  Considering all of the other events of the weekend, it was a real joy to be able to call and hear that Wes was still breathing on his own.  He continues to do very well with his feeds of 20 mls of breast milk every three hours, and is currently on just enough sugar water to keep his PICC line open.  There have been discussions amongst the doctors that Wes could be ready to have his PICC line removed (that is the IV that threads all the way up his arm almost to his heart).  Max has had a crazy couple of days.  Crazy in a good way for the most part.  He had been on very high vent settings of roughly 46-50 and high O2 in the 80-90% range.  The doctors did decide to go ahead with the steroid treatments.  As expected, Max's blood pressure elevated.  To combat this, the doctors have implemented Inhaled Nitric Oxide (INO) which is used much like Nitro Glycerin in people with high blood pressure.  It helps to open up the blood vessels, and Max's application is used in conjunction with his jet vent and delivered right into his lungs.  Also, I mentioned that Max got a larger ET tube as well.  Needless to say, one of these things worked worked, and since it is hard to pin point what variable lead to the changes detailed below, we are just going to say it was God.  When we left the hospital tonight, Max was at a vent pressure of 30 and his oxygen was about 65%.  He has not been on vent settings that low in weeks!!  The respiratory people have been suctioning a lot of liquid out of his lungs, and this fluid shows evidence of Staph bacteria and possibly pneumonia.  Also, Max seems to have episodes where he fights the jet vent and his body starts to shake quite a bit.  Not shaking like in The Exorcist, but pretty active shaking for a 2+ pounder.  The doctors are a little puzzled by this, and they may be leaning towards using the conventional vent more than the jet at this point.  We are ecstatic about the improvement on the vent settings, but a bit concerned about the shaking and possible pneumonia.  We trust that God will continue to hold Max tightly in His grip and grow and develop Max's body in His timing.  Also, both boys weighed 2 pounds 7 ounces last night...so we are very happy about their weight gain as of late!!

This weekend was both beautiful and difficult at the same time.  It was incredibly hard to commit Mom's earthly body to the ground at the graveside ceremony, but the memorial service at night was such a beautiful celebration of her life.  God has certainly been covering us with His grace over the last number of days, but the reality that Mom is gone is starting to set in.  With it being the week leading up to Mother's Day, it is particularly difficult.  Please pray for Kate, Dad, Becky and Lisa (and myself, Henry and Joe), that God will continue to pour out His grace, to grant a comfort and peace that only comes from Him.  We all know that Mom is in Heaven and no longer has to fight or suffer, but there is still a void in our hearts that will never again be filled.  We do not anticipate the healing process to be quick, easy or anything in between...it never is when you love someone as much as we loved Mom.  But as Christians, we have hope.  Hope that we will again see Mom when Jesus has finished preparing our homes in Heaven.  I cannot wait to sing the song "Sanctuary" with her again.  It was a song that she loved, a song that we sang at her graveside ceremony, and a song that Kate and I have sung to the boys every night, either in Kate's belly or in their incubators.  It is a daily reminder to me of her legacy...a life lived for her savior Jesus Christ.

Lord, prepare me to be a Sanctuary

Pure and holy, tried and true

With Thanksgiving, I'll be a living

Sanctuary for You.

Thank-you Jesus

Where do I start?  The boys have been doing well over the last few days, and we praise God for giving us some relief from having to worry too much about them with all of the other things going on.  Max has been on roughly the same vent settings as before, but his oxygen needs are starting to come down.  He was in the 60-70% range yesterday compared to weeks in the 80-90% range.  That is great news as it may be an indication that his lungs have healed a bit and that areas that had been "closed off" could now be open and exchanging new, oxygenated air.  Max is also getting "full feeds" for his weight and age which is 18 mls every 3-hours, and he seems to be doing very well with that.  Max also got a new vent tube put in yesterday.  As the boys have grown, so have their throats and the vent tubes that have been in place for 3-4 weeks are now too small.  So Max was intubated with a larger size tube, and that seems to be helping quite a bit.  They tried to use his other nostril (just to keep his nostrils maturing at the same rate), but the doctor hit a blood vessel and started quite a nose bleed, so they had to use the same nostril again.  Wes has had a great couple of days.  He had the same issue with his vent tube being too small and a lot of air from the vent was leaking out.  He had been doing really well on his vent settings, so when the doctors took out his tube, they gave him a chance to breath on his own.  Think of it as kicking a baby bird out of the nest to see if he/she can fly.  They hooked Wes up to a CPAP machine that only provides pressure to keep his lungs from collapsing, but does not breath for him at all.  The nurse that I talked to felt like he had a 50/50 chance of staying on the CPAP versus having to be re-intubated and put on the vent again.  That was about 24 hours ago, and he is still flying!!  In fact, they have been able to turn down both his oxygen and reduce the pressure given by the CPAP machine.  Thank-you Lord!!  The nurse said it took him a little time to get his rhythm going, but he is breathing on his own.  Not bad for a kid who weighs 2-lbs 6-ozs and is supposed to be in the womb for another 10-weeks!!

We are so thankful the the boys have had a good couple of days.  We are also thankful that they really only have issues with their respiratory systems at this point, too.  One of the nurses told us that she would take chronic lung disease over brain bleeds and digestive issues, because the lungs continue maturing and developing for many many years.  It is good for us to hear that because it allows us to change our perspective and find more things to be thankful for...and we need that right now.  Kate said that she thinks the boys have been doing well because their grandma can watch them all of the time now, so they have been on their best behavior!!

Yesterday was the visitation for Kate's mom.  I think the whole family was kind of dreading it, but my feeling looking back was that it went really well.  A TON of people came, which is just a great testimony to the kind of lady that Mom was.  We did not do an open casket, but Kate made these beautiful little "gifts" from Max and Wes with their pictures and a set of their hand prints and foot prints and a note telling Mom how much they love her and how much they will miss her, and we put that in her casket.  Today will be a tough day.  Please pray that the family will be given an extra outpouring of God's grace as we say goodbye to Mom. 

John 11 verse 4:

⁴When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it."