Thursday, January 31, 2008
Friday, January 25, 2008
"The smallest children are nearest to God, as the smallest planets are nearest the sun"
-Jean Paul Richter -
This has been another emotional week for the boys. Sunday night they were able to extubate Noah and at first it seemed that finally Noah was going to succeed at being off the ventilator. Within 48 hours though his Co2 levels were rising and he was breathing very hard on his own. Late Tuesday night the doctors decided to once again reintubate Noah. Wednesday Noah had laser surgery for both eyes and he would have required being on the ventilator for the procedure anyways but still it was so disheartening. Thank goodness Noah's eye procedure was brief and he did not require nearly as much treatment as Jonah did over a month ago. My greatest worry for Noah is that he may require a trachea in order to be able to go home since he has struggled so much with being extubated on his own. I guess we will cross that bridge if we come to it.
Neurosurgery finally contacted Jonah's original neurosurgeon in Fresno about his shunt as their efforts at tapping were not succeeding in helping the shunt to drain properly. After talking to the original neurosurgeon they discovered that the shunt's pressure valve can be adjusted externally (although I am not sure why they didn't make this call over a week ago when after surgery the shunt was still not working efficiently) because the valve has magnets which can be altered with the use of a special tool. Within 24 hours of finding this out they had the medical equipment company's representative at the hospital with the tool and they made an adjustment to Jonah's shunt. I am happy to say that today his head circumference has gone done 1.5 centimeters and it appears that finally his shunt is working correctly. I am so grateful he did not require yet another surgery to correct his shunt situation. The great news about Jonah is that he bottle fed 3 cc's yesterday and the occupational therapist was very pleased with his coordination. We have been worried about Jonah, especially with the high risk he has for disabilities, that he would not be able to learn to bottle feed but he proved that he definitely has the ability yesterday. It was so wonderful to see and I was so thrilled and excited for him. Of course today, he was sleepy and disinterested when the therapist came by so he didn't really latch on or cooperate. I know this process will be slow going and very long but hopefully with him doing so well yesterday he will have a good chance at eventually learning to bottle feed.Jonah still weighs around 4 pounds 10 ounces and Noah weighs (get ready for this!) 6 pounds. I can hardly believe how big Noah has gotten. Sometimes it is even more frustrating because he is close to the size of many newborns and still not going home. They started fortifying Jonah's feeds so hopefully this will help him catch up to his brother and with his shunt situation hopefully on the mend it should also help.
Noah continues to have issues with not processing his food correctly so his feeding is slow going as they keep having to start feeds and stop feeds because his GI tract will get backed up. I am so amazed that Noah continues to do as well as he does weight wise when he has never even made full feeds (which is considered for their age right now 1.5 ounces every 3 hours). Jonah is at full feeds and now gets 1.5 ounces every 3 hours.
Both boys are full term today.
I feel that the boys will probably be here in Los Angeles for at least another week if not two as Noah will continue to require follow up from his laser procedure.
Keep the boys in your prayers as both have such an incredible ways to go. I get so exhausted some days with this whole experience but I try to focus on the fact that the worst of it is over and although the road ahead is just as challenging at least it means that eventually they will come home.
We will continue to update you. Thank you all for your love, support and prayers.
Love Shane and Michelle
Sunday, January 20, 2008
I couldn't resist uploading these photos just taken last night. I hope I'll soon have similar photos of Noah as they are talking about extubating him tonight (or taking him off the ventilator)! They have been slowly weaning him for weeks now and he is finally reaching the stage where he might tolerate being off the ventilator and on the nasal cannula system.
Friday, January 18, 2008
I am following in his ways
I am trying to love as he did
In all that I do and say...
Just tonight I sang this Janice Kapp Perry song to Jonah as I held him. It has become a favorite of mine and Jonah is really comforted by the children's gospel songs that I sing to him. I must admit that tonight I needed to hear the comforting words of gospel songs that remind me of God's love and plan for these sweet boys.
This past week has been difficult as Jonah continues to have issues with his shunt. He underwent surgery over a week ago to revise the shunt because it had stopped functioning. It still is not draining as it should be and for the past five days neurosurgery has tapped the reservoir of his shunt and removed about half an ounce of spinal fluid each day to relieve the extra pressure. Shane and I are frustrated as we continue to ask what the plans are long term and why the shunt doesn't seem to be regulating things as it should be. It seems that the NICU team here isn't sure but the neurosurgeon is convinced that the shunt is working and that by tapping for now we can possibly still help it function without another surgery. As parents we are frustrated that Jonah is not making progress but we have to trust the doctors and pray that they will be inspired to intervene soon should things continue as they are.
I was feeling frustrated tonight and scared. It is overwhelming sometimes to realize that Jonah will always be faced with these challenging health situations and that he may not run and play like other little boys. Sometimes it is so hard to remember that life goes on, even with all that we face. The hardest part is to not sometimes envy the regular lives of others. I miss the days that I woke up, went to work and came home to dinner and rest. What where those days like?
So as you can see we have not yet been transferred from Los Angeles. The surgeon following Noah had us convinced he would have laser for his eyes yesterday and then when he showed up to examine Noah he felt like he didn't want to do the surgery just yet. So this upcoming Monday Dr. Lee will take a look again to see if he still feels like Noah qualifies for the laser procedure to correct his ROP.
There are still good things, small steps of progress, for example Noah is finally being weaned on his ventilator and they are talking about taking him off early next week to see if he can fair well on high flow oxygen (the same system that Jonah is on). This is a huge step as being off the ventilator is a huge milestone for a preemie. It is also one step closer to home.
Noah weighs 5 pounds 7 ounces and Jonah weighs 4 pounds 9 ounces. They haven't gained much more as both have been up and down with their feeds. Jonah earlier this week vomited old blood with one of his feeds so they had to stop his feeding and start him on medication to line his stomach to heal any stomach irritations or sores that may have developed so they could attempt feeding again. Noah isn't tolerating being at "full feeds" (a little over an ounce every three hours) if they are given all at one time so they started him on "continuous" feeds which is where they give him 15 cc's every hour, 24 hours a day so it is constant. He seems to be tolerating the smaller volume and is doing better now.
We will be in Los Angeles for at least another week and then I do believe the next step would be Fresno.
For now we ask that you continue to pray for our boys. This journey is so long and challenging, we need every bit of strength and support that God can provide. Pray for our continued abilities to manage this path and for the progress of our precious boys so that they may come home to us soon.
Love, Shane and Michelle Hanna
Wednesday, January 9, 2008
Noah's eyes still looked fair today. The doctor wasn't happy with his progress considering the boys are now 37/38 weeks old gestation wise but his eyes aren't at the stage of needing treatment. He wants to continue to monitor Noah to make sure he doesn't need laser. So that means they will be here for at least another week.
Where we go next, I do not know. I wish Jonah would be sent back to Fresno as well as Noah but I have a feeling we won't be so lucky this time.
We will keep you posted as to where they end up.
Love, Shane and Michelle
Sunday, January 6, 2008
I enjoyed this quote sent to me by good friends (thank you Neal and Tina). I find that I am constantly meditating and praying for the strength to handle the challenges that Noah and Jonah face. Some days I know that I have a greater ability to manage our trials than others but I am at peace with knowing that these boys chose us as parents and God trusted us enough to see both boys through this long journey of being born prematurely.
Below are photos and videos of both boys. They are both still in Los Angeles and will remain here for the next couple of weeks. So far Noah's eyes have not met criteria for the laser procedure to correct his ROP (Retinopathy of Prematurity). Jonah's eyes looked improved this past Sunday. This coming Monday the doctor will examine both boys to see how they are progressing.
Both Jonah and Noah are finishing antibiotics for pneumonia. The move to Los Angeles was definitely stressful on both and they both came down with illnesses shortly after their transfer. Noah was just switched today to the conventional ventilator from the high frequency oscillator. We got to hold him today for the second time in three months. It was a very happy day for both Shane and I.
Jonah has been doing fairly well aside from a few "episodes" where his heart rate will go extremely low and his oxygen rate will desaturate (bradycardias). Last week he was vomiting his feeds and they had to stop feeding for 24 hours to give his stomach a break and then started feeds again. They have been doing continuous head ultrasounds and the doctors say his shunt appears to be working but his spells have us worried that he may be having a few related issues.
I hope we are able to get Jonah transferred back down to Fresno after this stint in Los Angeles so he can return to his original neurosurgeon. I don't think Children's of Central CA will accept Noah as his only issue is related to his lungs and a lesser acuity NICU can manage his care. More than likely the boys will be split. It is hard to think about but Jonah's health demands that he be followed by a surgical team equipped to handle anything that may happen.
Noah has also been struggling with his feeds. He has twice suffered from distended bowels and they have been worried about blockages in his intestinal track. He has been back and forth on feeds. Just yesterday they started feeding him again with the hopes that he will be able to better tolerate breast milk.
I so wish I could say the boys were coming home at their original due date, January 24th. It does not appear likely and I was hoping that at least one would come home end of February but it all depends on their progress this month. They both still have such a long ways to go, it could possibly be until March before we see them come home. Once both are able to start bottle feeding we will have at least a month to go before they are able to come home and neither are near that milestone yet.
Keep praying for both boys. Your prayers are what keep them going. Just last night Shane gave Noah a priesthood blessing, praying for his lungs and the ability to switch over to the regular ventilator and this morning we went in to the hospital to find him switched. I am convinced that the power of prayer and God's divine intervention has kept both boys with us. I have had discussions with others who have themselves or who have known others that have carried twins and tragically lost both or one of the babies after being born as early as Jonah and Noah. We have been so blessed to have both of our boys still with us. Although our road may be long we feel so strongly that we are blessed to have both of these sweet miracles in our lives. Both Shane and I feel a great joy in being able to hold both boys and we have a deep love for their sweet spirits. God has blessed us so much.
Thank you again for your prayers. Keep praying.
Love, Shane and Michelle