Dear friends. Here we have been very busy with the various things of day-to-day life, family, postpartum recovery and especially with the things of Alissa, who is still in the hospital.
Forgive us for our delay in responding to messages. We are grateful for the hundreds of people who are praying for her in different parts of the world. By His grace, we have peace but we continue to seek, ask and knock doors.
For some reason, some contacts on our newsletter list don’t seem to be receiving our emails. Please check your spam box. We haven’t left any of our friends and brothers out. So, if you know that someone who should be receiving the news hasn’t received it, please forward this link where we can post the updates more easily. Thanks!
* Update. This situation went on far beyond what we imagined. For this reason, in addition to being an update for prayer reasons, we are using it as a diary too, which we decided to share with our intercessory partners. In this way, we have better control and reminder of what has already been done and the next steps we will be taking. Thank you for walking with us at this stage of life.
Update in Pictures: https://photos.app.goo.gl/AQKYyw7Y6PmwDAy46
3/27 Serenity Alissa was born
Mommy and baby are doing well.
She came sooner and a lot faster than we thought. Everyone was awake so she soon met the whole family.
3/30 Admitted into the ICU
4/2 First news from the hospital
Today the hospital called us saying that the doctor wanted to talk to us. So when we made our daily visit to drop off expressed milk for Serenity, we spent over an hour talking to him. He was very kind and also very positive about Serenity’s progress. Because there was a significant drop in her bilirubin levels yesterday, they reduced the treatment measures until finally this morning, they removed her from all treatments so that they could monitor her response without them. Upon retesting her bilirubin today, there was a tiny drop (from 10 yesterday to 9.8 today), even without any treatment! This is VERY good news!
However, she is not “out of the woods” just yet, so please keep praying for her! This is because the cause of her jaundice is my antibodies in her blood, actively trying to destroy her red blood cells. Because the antibodies are still present, she may still experience an increase in bilirubin as red blood cells are broken down. Please pray against this increase in bilirubin!
The other major concern with Hemolytic Disease of the Newborn is anemia, which can be very serious or even fatal. At this point, Serenity’s numbers show a tendency toward anemia, but it is not serious. Please pray against anemia as well! She will need to be monitored closely for at least her first three months.
Tomorrow’s tests will determine a lot – whether she needs to remain in the hospital for further treatment, or whether they will start to consider when she might come home! Calling all intercessors to come before the throne for her now!!!
Probably the MOST difficult thing about this situation is the sad fact that we cannot visit or see her at all due to the hospital’s restrictions on visitors due to coronavirus. But after our talk with the doctor, a kind nurse brought Serenity to us so we could see her briefly! We couldn’t hold her, but even so, it was a precious moment to see her looking so well and healthy. Our arms are longing to have her home.
4/3 Serenity’s test results
Now, Serenity has been all day yesterday and all day today without any treatment, only in observation. Today’s blood draw showed a very slight increase in bilirubin, from 9.8 yesterday to 10.9 today, but with critical treatment levels being at 17, this is very good news!
The same kind nurse that also brought Serenity for us to see briefly yesterday did so today, and she is looking SO good! The part of the news that was not my favorite was that, because tomorrow is Saturday, they will not test her over the weekend, nor can we even deliver milk. So their plan is to retest her blood on Monday morning, and they asked us to come at 10am to talk it over with the doctor.
4/6 Suspecting Biliary Atresia
After a long weekend, this morning we went anxiously to the hospital to speak with the doctor about Serenity’s condition. She had been four days without any treatment, but unfortunately, her blood test from this morning showed an increase in bilirubin – from 10 last Thursday to 17 this morning. This means that she needs to go back under the bill lights again.
Upon leaving the hospital, we had decided with the doctor that if her numbers were low again tomorrow (Tuesday), we would bring her home, and take her back to the hospital for testing on Thursday, while understanding that if there was a rise again on Thursday, there was a possibility she would have to stay in the hospital again. I still felt this was preferable to leaving her in the hospital for observation until then.
However, we received a phone call from the hospital about dinner time. They asked us to go back tomorrow morning to discuss a concern with the doctor. Today, they did an ultrasound of her internal organs to ensure there was no damage done, and they found a rare disease of the gallbladder called biliary atresia. This affects 1 in every 15,000~20,000 infants, and is a blockage, malformation or absence of the gallbladder ducts, resulting in a build-up of bile in the liver. The treatment for this is a surgery called the Kasai procedure to restore a path for bile flow. Even in cases where this treatment is successful, about half of these infants need a liver transplant before they are five years old. 85% require a liver transplant before they are 20 years old.
The doctor who called said that further tests were necessary to confirm the diagnosis – it is not definitive.
4/7 Permission for more tests
This morning (Tuesday) we went to the hospital to talk to the doctor about the possible diagnosis of biliary atresia that they might have found via ultrasound yesterday. This is completely unrelated to the hemolytic disease that Serenity has been treated for up until this point. Basically, the doctor just spent a good amount of time explaining to us what biliary atresia is, what the treatment is and other possibilities to consider.
This diagnosis is not yet sure, and so they asked our permission to do more tests to confirm (or not!) the diagnosis. They were to start this afternoon with extensive blood work, followed by a more detailed ultrasound. There were two other tests that may be necessary as well – one involving injecting something into the veins to see if it finds a passageway through the bile ducts, thus confirming whether the passageway is open or not, and the other would be to insert a tube through the nose into the first segment of the small intestine to detect the presence or absence of bile there. The next steps will be determined by these tests – whether the presence of biliary atresia can be eliminated and she can come home to be monitored for hemolytic disease only… or whether surgery must be scheduled.
Her bilirubin is down from yesterday (from 17.8 to 13.1) and her hemoglobin is up a bit (from 10.7 to 11.9).
4/11 Ultrasound, tubes, color fluid…
So… we went to the hospital this afternoon to drop off milk and get some news of our princess. The good news is that her bilirubin is down to 9 without having been under the lights for the past three days.
As to their suspected diagnosis of biliary atresia, we still don’t have much information.
They ran detailed blood tests, which the results aren’t in for yet, another ultrasound, and from yesterday to today, she had a tube through her nose down through her stomach to the small intestine to check for the presence or absence of bile there. These results are not in yet either.
Monday-Tuesday, they plan to do one final test which involves inserting a colored fluid intravenously to see if it passes through the bile valves or not.
4/14 Two weeks in the hospital
The good news is that her bilirubin is stable at about 11 without being under the bili lights for nearly a week now. It may still take some time for it to go down to normal range because my antibodies in her system are still causing hemolysis (destroying her red blood cells).
The other good news is that we were allowed a one hour visit with her on Saturday. This was too short, of course, but a treasure none the less. We prayed over her, anointed her, and just loved on her.
Today (Monday) we went to the hospital to drop off milk again, and ask for any updates on Serenity’s tests. From Thursday until Friday, they had a tube through her nose down into her small intestine to test for the presence of bile, plus last Tuesday’s more detailed blood work.
The final test is being done today and tomorrow, that of injecting a special chemical intravenously to see if it passes through the bile ducts, or if there is some absence or obstruction.
Unfortunately, they wouldn’t give us much information. They said they needed to wait until tomorrow’s test is finished so that they can gather all the data and draw conclusions.
4/15 She will need surgery?
Today’s talk with the doctor was disheartening. Basically, all of the diagnostic tests they have done since last week point to biliary atresia. The final diagnosis will be possible only through exploratory surgery, which is scheduled to happen next Tuesday, April 21st. If they confirm biliary atresia at the time of the exploratory surgery, they will immediately perform a Kasai procedure, which involves attaching the upper segment of the small intestine directly to the liver, and re-attaching the stomach to the small intestine further down. They estimate it to be a six hour surgery.
4/20 Lots of research
Once again, thank you for being our “Aarons and our Hurs” to hold us up in prayer during this time. We have felt battle-weary many, many times and we have SO needed you all to be with us throughout every day and every night. And we have truly felt that you have been!
Sorry this is going to be long, but so much has happened since we last wrote. Last Tuesday, when we heard from the doctor that Serenity’s test results did indeed indicate biliary atresia, it felt like the ground was falling out from underneath us.
From that time on, however, we poured ourselves into research and reviewing study after study of medical journals, we came to the highly plausible hypothesis that all of Serenity’s symptoms could be explained as a rare but not unheard of complication of Hemolytic Disease of the Newborn (HDN).
It appears that about 13% of babies with HDN experience a similar phenomenon, namely inspissated bile syndrome, meaning that bile is not passing from the liver through the bile ducts due to bile sludge caused from the high level of bilirubin, mixed with other substances.
In other cases as well, this has been confused with biliary atresia, as the symptoms and diagnostic test results are quite similar. We printed many such studies, highlighting pertinent information, and went to speak with the doctor about it on Thursday, with much fear and trepidation.
We were SO thankful that he was attentive and thanked us for our research, acknowledging that, in light of her diagnosis of HDN, the case did deserve further investigation before diagnosing biliary atresia (BA). We left the hospital feeling VERY hopeful, more than we had since they had first mentioned the possibility of BA.
The doctor decided to do a CT scan on Friday, and we were to go back on Saturday to discuss the matter further. He also told us that Serenity had had a low grade fever on Tuesday, which upon investigation was determined to be because of a staphylococcus infection, and which they were administering IV antibiotics for.
Friday night, we were able to speak via zoom with a well respected pediatric surgeon from Minnesota, Dr. Brad Feltis, who proceeded to consult with some other specialists before getting back to us. All of them shared the same opinion, that there was no need for surgical diagnosis at this time. Their recommendation was that she continue to be monitored outpatient for hemolytic anemia, as well as for the potential of BA. This gave us much reassurance!
Saturday we went back to speak to the doctor. He had reviewed the studies, but was still strongly leaning toward a diagnosis of BA, and still pushing for surgery on Tuesday. He planned to start with a liver biopsy, analyze it within half an hour, and if he was able to thus confirm BA, do a Kasai procedure right then.
Not knowing what else to do, we consented to the liver biopsy, thinking it the only way for them to confirm that it was NOT BA after all, although it was a rather invasive way! And one we did not feel peace about.
Further conversations with Dr. Brad Feltis led us to insist on them waiting to do the liver biopsy as well, while we sought a second opinion. Her labs truly did not show that she was in any critical condition for which surgery would be immediately necessary, and there was nothing to lose by waiting to see her body deal with the HDN first of all. If we were to see further symptoms typical of BA, we still had time to proceed with surgery, as the success rate falls rapidly after 60 days of age, but Serenity is still 24 days old today.
So today we called the hospital to let them know that we had decided to wait on tomorrow’s procedure, and therefore cancel our scheduled talk with the anaesthesiologist. We went to speak to the main doctor on her case, Dr. Deie, to explain our position and our desire for a second opinion, and to request that we be able to take Serenity home. It was a long SIX hour process, which included talking with three different doctors, but they finally released her to us!!!!!!!
Today was our 19th wedding anniversary, and this is not how I imagined we would be celebrating one month ago, but we celebrated none-the-less by getting to take our princess home with us!
So, where does this put us now?
First of all, we will need to continue a fairly aggressive follow up at the same hospital, including twice weekly blood draws to monitor her anemia, especially. It is possible that she will still need a blood transfusion. We will also continue to monitor her for further signs of BA, fever and anything else that seems out of the ordinary.
Second, we will be seeking a second opinion from more than one hospital. Because Hemolytic Disease of the Newborn is rather rare in Japan, and Serenity’s little complication of inspissated bile syndrome is even more rare, please pray that we will be led to the right doctor or medical team that will be able to offer a second opinion that is well informed on the subject, and not only well informed about BA.
Continue to pray for Serenity’s healing from HDN. Her bilirubin was at 5.7 today (Yay! It was 21 when she was admitted), and it has dropped on its own consistently with no treatment. Her hemoglobin has also dropped, which is not such happy news.
It is 8.0 today, which is not critical, but signals anemia none-the-less.
4/21 Looking for second opinions
Serenity remains stable, eating very well and she is also very alert. As expected, she is much loved by everyone here!
We visited a neighboring clinic and talked to the doctor about her condition. His position regarding the situation and the hospital’s diagnoses comforted us a lot.
Dealing with a rare disease in a foreign country goes far beyond language barriers. We are very grateful for so many intercessors. We have seen many doors opening since the beginning of all this even though it hasn’t happened the way we would like. Without Him, we wouldn’t have made it this far.
We visited yet another clinic in the city but got nothing new.
Other doors were also closed, due to the Coronavirus or because they did not address the specific problem:
Maki Clinic (has no pediatrics or know about the topic)
Saint Luke University Hospital (has no specialist in this area)
Tokyo Children’s Medical Center (do not accept new patients until the 30th)
Yokohama University Hospital (we’ll waiting for their return)
Fukushima Hospital (due to the distance and the risk of Coronavirus we were not accepted)
Setagaya National Center for Child Health (awaiting confirmation)
4/22 Follow up exam
Follow-up exam with the pediatrician (Dr Honda) at the hospital (Kitasato) where she was admitted. Anemia level improved slightly but bilirubin rose from 5.7 to 7.0. Nothing significant but the ideal would be for it to get lower.
The Department of Pediatric Hematology at Hospital de Setagaya agreed to take a look at the tests. We are now waiting to see if they accept Serenity to give us a second opinion. Yokohama’s gastroenterology department agreed to take a look at the exams as well.
4/25 Visit Saiseikai Yokohama Hospital
It has been a wonderful week, having Serenity home with us, but also emotionally exhausting as we have sought a hospital that would be able to offer a second opinion, and mostly hit dead ends. We were repeatedly told either that they did not have enough expertise to be of assistance, or that they were not accepting such requests due to coronavirus restrictions.
Wednesday Serenity had her repeat labs, and the good news is that her hemoglobin came up a little, to 9.2, after being in the low 8’s all the previous week! This is a very good sign that her body is producing new blood well and dealing with the anemia. Her bilirubin was up a bit as well, which is not such good news. It was 7 on Wednesday, up from 5.7 on Monday.
We spoke to Dr. Deie again, and asked him again about the possibility of percutaneous biopsy, meaning with a needle rather than an incision, but he said they don’t do that. We asked if he could perform ONLY the biopsy, doing the longer, more sure analysis before possibly proceeding to surgery, but he said he felt it was pointless to open her up without our permission to proceed to doing a Kasai right away if they determined it was necessary. But because there is still a margin for false positive, we felt very uneasy about this route! But what else could we do? If she DID have biliary atresia (BA), operating as soon as possible greatly improves the outcome, i.e. survival rate without a liver transplant…
We left feeling downhearted once again. Should we just consent to the procedure so that we could have a definitive diagnosis already?? What if we couldn’t find any place that would offer a second opinion? Or what if the second opinion was the same as the first, landing us back where we started? Then what was the point? Were we just chasing after the wind? And wasting time?
These and other questions flooded our minds. Where was peace?
The Lord spoke to me (Elizabeth) on Thursday evening in a gentle rebuke, to stop my striving and let Him do it. Too often in this process I have given in to fear, anxiety, and worry, and I needed to repent, surrender and “trust in the Lord with all my heart and lean not on my own understanding; in all my ways acknowledge Him and watch Him direct our paths.” (Proverbs 3:5-6)
And guess what today brought? A breakthrough!
Our pastor here has an older brother who is a doctor, who got us in touch with a pediatric hepatologist (liver specialist), who agreed to see us TODAY! The hospital where Serenity was faxed over all of the test results and documentation, and we went at 11:30am to discuss it with her (Dr. Inui).
We were very encouraged by our meeting with her. She was very knowledgeable and has many years of experience under her belt in the specific area of baby’s livers!
She agreed that the test results could mean that Serenity has BA, but that there are also many other reasons why test results could be such. At any rate, she urged us to do what was necessary as soon as possible to rule out, or confirm, the diagnosis of BA, as early surgery is more successful.
We were very happy to hear that she does do percutaneous liver biopsies – 50-80 per year, she said. She agreed that the half an hour analysis is not the best method for diagnosing with accuracy, but that the other, more sure method still yields results in 24 hours. So, we decided to go ahead with the biopsy, via needle rather than incision, which requires sedation but not general anesthetic, and then have her analyze the results. We felt so much more peace about this direction!
So, this is what we set up:
Monday 04/27 – Serenity will be admitted to Sai Seikei Yokohama Tobu Hospital for bloodwork and other pre-op procedures.
Tuesday 04/28 – she will have the biopsy procedure, which takes about 30 minutes. She will need to stay in observation afterwards.
Wednesday 04/29 – so long as there are no complications, she will be discharged.
We will not enjoy having to give her back after one week together at home, but if we all survived the three whole weeks she was inpatient before, we will make it for this next two nights. We believe this is the route the Lord has led us to, and we both feel confident that He is directing our path. We trust in Him!
4/29 The procedure is over
This morning we went back to the hospital to pick her up. Yesterday she had the procedure and the nurse said all went well. She will finally be with us all Thursday with no hospital, blood drawing or tests being done. Friday we’ll be going back to talk to the doctor about the results.
5/1 Serenity’s biopsy results
So… this week Serenity was admitted to the hospital from Monday until Wednesday for her liver biopsy, and today we met with the hepatologist to discuss the results.
The results were not what we wanted to hear. She said she is fairly certain that Serenity has biliary atresia. She called the other hospital (where Serenity was before) to set up for us to go there tomorrow morning to talk to the doctor and schedule surgery.
Although we would have loved to hear otherwise, we both felt God’s grace over us in abundance. We continue to feel His leading and His care over us and over Serenity, and we continue to our trust in Him to lead us through this time!
Thank you for joining us on this rough journey.
5/2 Back to Kitasato Hospital
This morning we went back to Kitasato Hospital to talk to the doctor and schedule surgery.
This is what we set up:
Tuesday (5/5) we will admit her to the hospital for pre-op procedures.
Thursday afternoon she will have surgery.
The surgery will go like this:
First they will perform a cholangiography which is THE final step in diagnosis. This will determine whether the bile ducts are actually present or not.
If they are not, they will proceed to do a Kasai procedure. If you are interested in knowing more about what biliary atresia is or what a Kasai procedure involves, this three minute video explains it very well. https://youtu.be/
Although we would have loved for the results to have said otherwise, we both felt God’s grace over us in abundance, even as we heard this “unhappy” news. We continue to feel His leading and His care over us and over Serenity, and we continue to our trust in Him to lead us through this time! He has cared for us always, and He will not fail us now!
Thank you for joining us on this rough journey.
5/5 Serenity was re-admitted today…
I ended our last email with these words, “Thank you for joining us on this rough journey”. Well, just after sending it, I was reading once again the words from Isaiah 40, which has been so precious during this time. This time, however, a different section jumped out at me:
“In the desert prepare the way for the Lord; make straight in the wilderness a highway for our God.
Every valley shall be raised up, every mountain and hill made low;
the rough ground shall become level, the rugged places a plain.
And the glory of the Lord will be revealed, and all mankind together will see it.
For the mouth of the Lord has spoken.”
I wept as I felt the Lord speaking to me through this passage. Our “rough journey” will soon become level, and the rugged places a plain! Why? That the GLORY of the Lord will be revealed … for all mankind to see it! I realized that, if the Lord had not yet answered our prayers and the prayers of the many, many people who are agreeing with us for Serenity’s healing, it is because He has a grander plan and purpose to reveal through this situation … for HIS GLORY and so that we may have an opportunity to testify of His greatness.
So… today we admitted Serenity to the hospital once again. We got to meet Prof. Tanaka today, who is the head of the pediatric surgery department, and he put us at ease with his friendly style and smiling eyes. He gave us the blood test results from the draw they did on Saturday 05/02, and it showed her hemoglobin up a bit (to 9.2), and her bilirubin down a little bit more! Her liver enzymes are still a bit elevated, but only slightly, and one (GGT) has actually come down significantly. He told us that this was all “mysterious” to them, because one would not expect to see such blood test results in the case of biliary atresia, but because all of the other tests, including last week’s biopsy, pointed to it, they could not be remiss about finding out for sure by actually opening her up. Again, because in the case of biliary atresia, the sooner the Kasai procedure is done, the better the chances of the child surviving without a liver transplant, it is important to take this step.
They let us stay quite a while with her today, as the visits will be limited to half an hour per week after this due to the Coronavirus restrictions. Leaving was extremely hard. Please pray for us, and for her, as we are far away from each other.
One thing we are extremely thankful for is that Fabio’s brother drove ten hours to get here yesterday to pick up four of our kids and take them home with him! It has been a real challenge to manage a hectic household while quarantined, and care for a complex newborn with almost daily trips to the hospital, which generally take the better part of the day every time! The kids have all pulled together, and the older ones have really stepped up, but it has been tiring for all, and we are SO grateful for this help! Now they will have three cousins that they will be able to enjoy being with.
The big day for surgery is Thursday, May 7th. Please continue to uphold Serenity in prayer!
5/7 The big day
So we are at the hospital since 9:00 and thankfully, they let us be with Serenity until the time comes for the surgery.
They said they would take her probably around 1pm.
We had to sign more papers and again, here is the next steps:
1. Cholangiography test
2. Liver biopsy
3. Kasai procedure (if Biliary Atresia is confirmed)
Thank you again for standing with us in prayer!
– 9:20 pm and still waiting…
We know a lot of people are wondering what the status is. Well, so far all we know is that we’re at the lobby, by ourselves, still waiting for them to call us. Nothing else…
We’ll post more later on.
– Surgery done and over. For now.
5/13 First visit after surgery
So this Wednesday (5/13) we had our once a week visit. Two days before, we had received a phone call from the doctor saying that everything was going well except that the stomach fluids didn’t seem to be flowing as well as he wished. Because of that, they would have to hold off beginning to feed her a little longer to keep an eye on it, as there could be an issue with the new “connection” between the stomach and intestine. If so, in the worst-case scenario, they would have to open her up again and to see what the problem was.
When we went to visit, however, he said that things seem to be moving better now! So they were planning to begin feeding her milk the next day (Thursday) starting with very small amounts to see how it goes. Since the surgery, she has been fed via IV only. This will be the real test to see how both her liver and stomach are functioning with the new “rearrangement” of organs.
Other than that, her hemoglobin has gone up from 10.2 after the blood transfusion she received at the time of the surgery, to 11.8 on Monday. This is VERY good news, that my antibodies are not attacking her red blood cells faster than here body can make more. Hopefully, this means that we are near the end of her troubles with Hemolytic Diseases.
It was difficult to hold her, as she is connected to so many different things: an IV in her neck, a tube from her nose to drain the stomach, heart and oxygen monitors, and the drain coming out of her belly. But we managed it, and while she was fussy and restless most of the time due to her empty belly, she did have a wonderful, happy time of recognizing mama’s voice and responding with beautiful smiles. It made our week!
5/19 Week Two Visit with Serenity
Hello , how are you? Thank you for joining us in faith for Serenity.
“Praise be to the Lord, for He has heard my cry for mercy. The Lord is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song. The Lord is the strength of His people, a fortress of salvation for His anointed one. Save your people and bless your inheritance; be their shepherd and carry them forever.” Psalm 28:2,6-9
The Psalms have been so dear during this season – such depths of emotion displayed in poetry, and such hope inspired by the Spirit of the Living God! I have no idea how despairing it would be to walk through this valley without the Stronghold of His Word and His Presence, and the support of His Body ministering to us and upholding us before the Throne. Thank you.
We are very thankful to say that Serenity is making good progress in recovering from her surgery. Tomorrow will be two full weeks since the operation, and now all drains and tubes have been removed except for the IV in her neck. She began to take tiny bits of milk last Thursday, starting at just 10cc per feeding, which was gradually increased daily as she seemed to be tolerating it well, until yesterday she was able to take a full feeding orally! Her stool color has darkened considerably, testifying to the flow of bile through the “new plumbing”, with which the doctors are pleased and hopeful. We were able to go for our weekly visit yesterday, and she was much happier than last week when she had an empty belly. She was very interactive and seemed genuinely pleased to see us.
We have one major prayer request: that she be able to come home SOON! In Japan, they tend to take a very conservative approach regarding hospital admission and want to be extra-carefully sure that everything is resolved before discharging a patient, which really is a good thing.
However, we feel there are times that it may be possible to continue monitoring the situation outpatient. We are praying that they will be favorable toward this possibility soon, now that Serenity is able to feed orally.
Tomorrow’s blood test will likely determine how favorable they will be toward her coming home, so please pray that the numbers look good, specifically that her bilirubin will have dropped a good deal. They explained that it is normal for it to go up after surgery due to the stress on the liver and all of the body because of the surgery, which brought Serenity’s direct bilirubin up to 5.7. Monday’s blood test showed it to be at 5.6, which was four days after the previous blood test. If it has not gone down by tomorrow’s test, the doctor will likely want to start steroid therapy, which will likely mean more hospital time.
So, to sum all of that up, please pray that her bilirubin numbers come down quickly!
We are so thankful for each of you that has walked this journey with us, for your prayers and your notes of encouragement. Thank you for being His hands and feet to our family during this time.
5/22 Friday blood test results
So her direct bilirubin did go down. Praise the Lord! Nevertheless, it only dropped from 5.6 to 4.7 since Monday. They continue to treat her with steroid medicine to help flush it out and again, their goal is to see it in the 2’s in order to let her go home. Each day feels like an eternity now. Thanks for your commitment in prayer.
5/25 Week Three Visit with Serenity
Today we had our once-a-week visit with Serenity, Week Three. Once again, she was very happy and smiley and we enjoyed a precious time together.
She is still doing well with recovery on most every front. They do blood draws on Mondays and Thursdays, and we had asked for prayer that last Thursday’s test would show her bilirubin coming down, which it did! It went from 5.6 last Monday, to 4.7 by Thursday.
We were very hopeful going to the hospital today that the draw from today would show a greater drop, and we would be able to discuss when we could bring her home.
We were very disappointed that there was actually a slight increase, to 5.0. This is not huge, but we (including the doctor) were hoping to see a further decrease. So we were still not able to have that long-awaited “coming home” talk.
Her hemoglobin was up to 12.0, so this is good news! And the doctor had saved her last four poopy diapers to go through with us, LOL, and he seemed very pleased to do so! The color is very “nice” and he feels confident that the bile flow through the new plumbing is now well established.
When we learned that Serenity would not be coming home in the next couple days as we had hoped, I asked to at least be allowed another visit this week, and the doctor said we could come again on Thursday. This way we can also discuss Thursday’s blood test results with him once again.
Please continue to persevere with us in prayer!
“Brothers and sisters, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. As you know, we count as blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.” James 5:10-11
5/28 Fourth visit
Today we will be visiting Serenity again, see the results of today’s blood test and have a talk with the doctor about her condition. Today marks exactly 3 weeks from her surgery. Yesterday was her 2 month birthday.
5/29 Party Day!
Today is a day to celebrate! Serenity was able to come home!!!!! I am so thrilled to see her sleeping here next to me as I write this. We know you will join in our celebrating as well!
The not-as-exciting part is that she is still not where the doctor would have liked for her to be before discharge. Her direct bilirubin was at 5.0 again yesterday (Thursday), exactly the same as it had been on Monday. And her stool color was lighter the past couple of days as well, which is not what we would hope for.
However, there isn’t much that can be done at this point but wait and see how she responds as she continues to recover from surgery. She will continue to have labs and ultrasound every Wednesday to monitor her progress. In the meantime, we will be filling her love tank and stimulating her emotional and intellectual development. There is no lack of stimulation around this house!
*For her liver to function perfectly and bile to drain effectively
*For the reestablishment of breastfeeding. It is a challenge, so far, and one we hope to overcome with patience.
6/10 Visit to the doctor and blood test
Today was our second follow up visit with Serenity’s surgeon since discharge. Last Wednesday was the first one, and it was rather discouraging. Her direct bilirubin was up even more, from 5.0 at the time of discharge, to 6.0 five days later. He said he still wanted to see her in a week, but that in the meantime he would be getting the paperwork together to refer us to the liver transplant specialist at another hospital. We were rather disheartened after that.
6/19 Talk with the transplant surgeon
Last week was our second follow up visit with Dr. Deie after Serenity’s discharge. Once again, they did labs to see how her numbers were, specifically her direct bilirubin. It showed a slight drop, from 6.0 the previous week, to 5.6 last week. This is not a huge drop, but we were still encouraged that it had not gone up any further. Dr. Deie also said that her liver felt softer – a good sign. Still, it did not appear that he had high hopes of her surgery having been successful, and he urged us to call right then to make an appointment to speak to the transplant specialist that he was referring us to.
So, that consultation was today. Dr. Kasahara is well-respected worldwide for his work with pediatric transplants. We found out today that the Tokyo Metropolitan Children’s Hospital, where he is based, is the world’s largest pediatric transplant center, and their success rate for children’s liver transplants is 97%. This was all very encouraging, and Dr. Kasahara was very kind and his explanations very thorough and easy to understand.
Best of all, however, was his report on Serenity. He did an ultrasound of her liver, and said that while it was swollen and showed alterations compared to a normal, healthy liver, that her condition was “not so very bad”, and that there was no reason for us to need to consider a transplant for now. He said he felt there was a good chance of her being able to grow up with her native liver as well! We asked if there were cases of babies with Biliary Atresia that had lab numbers similar to Serenity’s at this point (six weeks post-op), that continued to show improvement with time? He said that yes, he has seen many such cases! This was so very wonderful to hear!
*** For those that are fascinated by details, this next paragraph is for you. Otherwise, skip ahead! He explained to us that when a baby has BA, the bile ducts are atrophied, so that rather than being like a tube where bile can flow freely, it is more like a shower head with many tiny holes, so that the bile cannot flow well, even after a Kasai procedure attaching the small intestine directly onto the liver’s bile drainage area. However, the body is so “fearfully and wonderfully made” (my words, not his!), that it often finds an alternative way to eliminate the bilirubin from the liver! Rather than send it directly into the intestine, it can be sent into the heart via the circulation, circulated in the blood and eliminated that way as the body cleanses the blood! This was the first time we had heard of this possibility, and I am still in awe.
Praise the Lord with us for His provision in all things, for His amazing ways, and for His healing!
7/22 Follow up Exam | Blood Test Results
Serenity’s blood test results have shown a steady but slight rise in bilirubin each time, as well as in liver enzymes. She is feeding well and developing too. Thank you for joining us in prayer. Pray for her healing and that she would nurse. Since she left the hospital, she will only accept the bottle which keeps Elizabeth busy most of the time hooked up to the machines to pump milk and then feed Serenity with bottle. That happens on a daily basis in the morning, day and night.
See more details about our post concerning this day here: https://www.tsukayamafamily.com/blog/be-not-afraid-of-bad-news/
10/16 – Eight Days Post-Surgery
It has been 8 days now since the surgery took place.
Since then Serenity had some minor respiratory complications but they have been taking care of that as well.
This morning, she had a low-grade fever. They conducted all sorts of tests, but are still unsure as to the origin. It could be a sign of rejection, or an infection in the liver/ surrounding fluids, or it could be from the congestion still in one lung. They are administering broad-spectrum antibiotics.
Fabio is recovering well and should go home this weekend.
Elizabeth continues to come and go back home every day. When the baby goes back to her room, probably next Tuesday, Elizabeth will be able to stay with her, but due to Covid-19, she will not be allowed to leave the hospital until Serenity is discharged. It may take another month or so…
Yesterday Serenity was able to leave the ICU. She is still hooked up to very many tubes and needles. To make sure she doesn’t pull things off, they put a sort of “cast” on both arms. That keeps her from moving around although she looks so uncomfortable and fussy most of the time. Well, who wouldn’t be?
Overall, the doctors seem satisfied with the way things are going with her. The swelling has been going down and her eye and skin color has gotten much better. Her bilirubin level today is 1.5 ! (Just before the surgery it was around 20)
Above all, we continue to be at peace and have had many opportunities to speak about Jesus here. We know all things work for our good and all this hardship keeps drawing us closer and closer to Him as he gives us chances to share His goodness, in season and out of season.
AN ENCOURAGING NOTE FOR YOU:
Are you going through a hard season?
Are there giants knocking on your door?
Are the waves trying to overtake you?
Are the storms too big?
Remember that sight and faith can not walk together. So keep your eyes firm on the Author and Perfector of your faith.
No matter what you may be going through, nothing changes the fact that:
He is the Savior
He is the Healer
He is the Provider
…for all your needs. And in Him you may find rest. Don’t let sight deceive you and drown your faith. Your Daddy is for you. Always.
10/26 Serenity’s progress
11/07 – 30 days since surgery
Hello friends and prayers warriors,
Today marks 45 days since Serenity was admitted to the hospital, and 30 days since surgery.
Her condition at this time:
– All 3 drain tubes were removed from her belly. Praise the Lord!
– The bile drain bag was no longer draining, so they disconnected it and just rolled up the tubing. (This biliary stent will stay in place just in case it becomes necessary, for the next three months.) Praise the Lord!
– The tube from nose to stomach is out. Praise the Lord!
– The tube from nose to intestine is out. Praise the Lord!
– No IVs have been necessary for feeding nor medication. Praise the Lord!
– No signs of pain of any kind. Praise the Lord!
– Liver function seems to be in perfect condition. Praise the Lord!
– Today’s bilirubin level: 0.18 (Peak of 21 Before surgery). Praise the Lord!
– She has been taking 120ml of milk every 3hs, orally, as well as taking her medicine like a champ. Praise the Lord!
Yesterday Fabio had his one month post surgery check-up. Until now, he has had great days and also days when he feels sick with whatever food he eats, even in small portions. So far, he has lost about 15lbs. He says that, “removing the gallbladder and a part of the liver is a great diet strategy for people who want to lose weight.”
THINGS TO PRAY ABOUT
Off and on, she has had diarrhea and some congestion/ coughing. She has also not been able to get free from the oxygen tubes which is likely due to her new liver being larger and causing some compression on the lungs. They keep adjusting things in an effort to resolve these issues. Since yesterday we seem to be making good progress! Her oxygen is turned down to 0.1 liters, the VERY lowest it can be without being off! So we are getting very close! Her stools have also been fine the last two days. They will be able to discharge Serenity (and Elizabeth) once they are confident that both her respiratory and digestive function are in good condition.
Please join us in prayer so that she would be brought to a perfect health condition so that they may be released soon. Both them and the rest of the family ARE SOOO READY to have them come back home after this turbulent season and over a month of separation in the hospital.
THINGS TO BE THANKFUL FOR
We can’t stop mentioning that in the midst of this storm, we have been incredibly blessed, greatly encouraged and unexpectedly strengthened by God.
We do recognize the power of the hundreds of prayers. That is why we want to express our most sincere appreciation for your intercession, encouragement and support through all this.
We do not hide the fact that we did have many lows this year too. Yet we do not dwell on them. Instead we have also learned the power of REMEMBERING.
If you have not seen it, Elizabeth made a Facebook video sharing about it. We hope it will be of encouragement to your heart as well: https://www.facebook.com/elizabeth.tsukayama/videos/10164366454065634
During a good season or a hard season…Forget not all his benefits!
“The smiley baby”, as she is known by the doctors and nurses
Update in Pictures: https://photos.app.goo.gl/AQKYyw7Y6PmwDAy46